My Battle w/Mycosis Fungoides & Sezary Cell Syndrome

Wonder where I've been?

2008-02-03T21:16:00.000-06:00

Dear Friends and Family,
I'm finally updating my blog. There is so much I have to say but I will try to give only the highlights. However, before I begin, I'd like you to take note about commenting on my blog. When you leave a comment, the address that I receive is a "no reply" thus I'm unable to answer your questions because I don't have the corresponding email address (e.g. "rs" had left me a message but I have no email address to answer her/him). If you put your email address in the body of the message and you don't want it to be posted, just let me know and I can delete that part (but please put your email address in the "message" portion if you want a reply).

Medical Life
I did an experimental chemo the first two weeks of October. While it knocked my numbers down (which is good), I had a horrible reaction by breaking out in blisters all over my body. They, in turn, got infected, and I woke up one morning in mid-October unable to move. Fortunately, Keith always makes sure I have the phone next to me; I was finally able to lift my arm and reach the phone. I called Keith and said I needed to go to the hospital immediately. I took some pain pills and the paralysis (anyone out there know anything about this? - we don't) left before we went to the hospital. What motivated me to get moving was hearing Keith talk to his brother about how they were going to carry me down the stairs! We went and they did a lot of blood tests on me. Everything looked fine and I was sent home.

The next morning I got a phone call from North Austin Medical Center (NAMC) and was told to immediately come to the hospital. Actually this turned out to be God's intervention because the blisters on my buttocks had just that morning gotten very infected, and I was in a lot of pain. So I went the hospital and it turned out that I had MRSA (staph infection) in my blood which is very serious. Normal people have fever and chills when the blood is infected. Of course, I never run a fever or have chills. So we returned to ER and they finally put me in a room and doctors began coming in; I don't remember who all I saw. They began loading my body with antibiotics (every 3 hours a new IV bag). I needed to continue on the antibiotic regimen. The cultures never showed staph in my body again but they still wanted me to do 2 weeks of antibiotics. In order to do this so I could go home, they put is a PIC (portable catheter) line in my arm to receive the antibiotic. When Dr. Duvic from MD Anderson (MDA) heard I had a PIC line, she hit the roof. She said PIC lines are not for MF patients because of infection. I was discharged and sent home with my IV dangling out of my arm anyway.

The day before we were going to Houston for our normal check up, I had told Keith that something was wrong with my PIC line. That morning's infusion went straight to my breast (suddenly the perky little breasts I had in high school). When we went to MDA the next day, I told them that my PIC line was really bothering me. We were able to get an appointment with the PIC line specialist; when she unwrapped my arm, she started gagging because I had a horrible infection. And of course, me being me, it turned out the bacteria is very rare. So they immediately admitted me to the hospital. I have to tell you MDA food was incredible! For instance, I had garlic shrimp with linguini the first night. It was quite good! They put me back on antibiotic IVs to finish out my two weeks. After 4 days at MDA, I was sent home.

The following week, I became very bloated. I went into the hospital weighing 114 lbs. and came out weighing 141 lbs. By the third day of being bloated, I begged my mom to take me to the ER. She didn't want to do that because she wanted me to go back to MDA where they understand this cancer. So Keith took me down to MDA, and I was admitted again. They started running a bunch of tests on me and discovered I had fluid on my lungs. So they did a procedure where they drained the fluid off, and the next day I actually had strength to sit up without assistance. My mom had been complaining the reason I wasn't mobile was because I'd been lying around in bed so much. I was so excited that I could finally move with little effort. I kept overhearing Keith and the doctors talking using words like crashing and I thought to myself "they can't be referring to me." Earlier this month in January, Dr. Duvic said they almost lost me. And I had no clue.

My blisters were under control, no staph infection in my blood, and I could move on my own - I was sent home. I was very sad to leave the food and being waited on hand and foot. And I didn't tell you all about the whirlpool baths I had everyday. I would be taken to this room that had a huge, steel whirlpool, and put on a stretcher like apparatus that was then lowered into the nice, warm, soothing Jacuzzi. I would be washed by the attendant and then they would take me out, and rinse me off, apply this cream all over my body, wrap me in hot towels, lotion me up, and then send me back to my room. I was released the day before Thanksgiving. We had Thanksgiving at my mother's house. And every time I would try to get up and help, she would tell me to sit down. Talk about mixed messages, she been yelling at me for months to get up and now that I felt well enough to be doing things, she was making me sit down.

Then another nasty development - I began getting tumors on my face in October. Finally, in December one grew so that it looked like someone stuck a cherry in my face. It was quite unsightly needless to say; I have gotten very good at bandaging it. Because of the tumors, Duvic wanted to put me on another chemo called Gemzar. I could see some reduction in the tumors after my treatment but it was happening very slowly. So a couple of weeks ago, Duvic added another chemo to the mix called Doxil. This combination seems to be working well as the cherry tumor is disintegrating. The other wonderful thing about this chemo is that I can have it done in Austin and don't have to go to Houston every week. I now do two rounds in Austin and go to Houston for my third round, with a week off each month. The new regimen is every other week. Not having to go to Houston every week has greatly reduced my and Keith's pressure level.

Some other funny happenings: when I got into the hospital at MDA, in the bathroom, the vanity was such that I had a good view of myself in the mirror (I forgot to mention that my eyes had gotten so bad that I could hardly see). I was shocked and finally understood why Keith had qualms about taking me out in public. I was horrified how I looked. Also, I don't have any hair. Is because: a) the chemo made my hair fall out or b) I began looking like Jim Carrey portraying Count Olaf in A Series of Unfortunate Events? I had a tumor on my forehead and no hair would grow there so I was able to have my head shaved while at MDA. Now when I wear my little caps, people understand that I do have cancer.

I was doing better and seeing results from my chemo when suddenly this past week my hands starting cracking so that I cannot turn the faucet on or off without it hurting badly (or open doors, unscrew lids) and my feet, though not cracked, hurt to have pressure on them (walking) and pulse in pain. After talking to a doctor at MDA, I discovered that this is a side effect of the Doxil. My doctor told me it would last during the entire time I will be doing chemo, however; Doxil’s official website said it should only last for two weeks and if not, I probably have to come off of it. I’m still swollen in my hands and face but lost all the fluid weight; I’m around 110 and wearing a size 4

Another interesting thing: Dr. Duvic has connected me with a group in Maryland who are doing experimental bone marrow transplants. The good news is they would look hard to find a 10 of 10 marker match at no cost; whereas, if Keith and I decided to do that, we would have to pay thousands for the search. The bad news is if we do it in Maryland, they do not pay for housing (about $15,000 for the three months). They are searching the same database that MD Anderson is so we are weighing our options on what will be most cost efficient. Please pray that God will make it obvious which route to take. Audra called earlier this week from the transplant center at MDA and said they still have no 10 of 10 matches for me in the bone marrow registry.

Did I mention earlier that I can’t see? My eyesight has been blurry off and on for several months. I finally got an appointment with the ophthalmologist at MDA. I have to admit Keith and I both agreed she was a nut. For instance, she was singing show tunes. She kept saying that she thought I had cataracts but we never could get a straight answer from her. Finally after three appointments, she said “I don’t know what the $#$# problem is. You’ve got cataracts.” Keith and I looked at each other wondering "what is she talking about?" Every appointment would result in “no problem with my cornea, retina, pupil, etc.” but my eyesight was rapidly declining at one point going from -9 to -13 in about six weeks. It was going to take a long time for me to get an appointment with Dr. Kim, the cataract expert at MDA so I saw my optometrist in Austin, and he didn’t think I should get cataract surgery because he said my eyes kept changing, and the cataract surgery wouldn’t help. I went and saw my Austin ophthalmologist; after taking a look in my right eye, he declared I was 100% clouded with cataracts. So I double checked with him about seeing if my eye would change and he had no qualms about it. So we scheduled the surgery for the week before Christmas. After the surgery, I apparently scratched my cornea making it difficult to heal. As of today, I still cannot see clearly out of my right eye. In order to help me to see at this point in time, I’m wearing a soft lens in my left eye and will get glasses for the right eye especially since my vision might change again. With this combination, I can see at distance but not close up so I can’t see my computer screen. You may be wondering how I’m putting this information into my blog. All kudos goes to Cathy Tucek. Okay, that’s most of medical stuff.

Car wrecks
You may remember that last September I was in a car wreck, was hit from behind by a gun-toting, beer guzzling, marijuana smoking young man who didn’t have his driver’s license with him; however, he had up to date coverage with Progressive. BTW, Progressive was wonderful; I’m now their exuberant spokesperson. Then my mom and I were driving back from Houston in her car in October when her back left tire dropped off the road (construction with non-level lanes). I know we did at least one 360 with my mom panicking and saying “we’re okay…we’re okay…we’re okay” over and over. We were close to a gas station and so we limped our way over there. There was a young man getting gas and I asked for his help. He was so helpful and he employed the help of another friend who was a mechanic. When they took the wheel off, they saw that the rod leading to the wheel from the chassis was bent at 90 degree angle. Obviously, God was on our side. After a quick call to my dad, he came and picked us up (we were in Elgin). I was also rear-ended again sometime that month. And then finally in November, I was driving to the store, blacked out, and hit a median, tearing up the transmission pan. On Christmas Eve on the way to my mother’s house, Keith was talking about all the accidents we had had (my mother and I), and was bragging how he hadn’t had one. 10-15 minutes later, BAM! We were hit from behind. We found out earlier this week that the mini-van was totaled. Fortunately, we are coming out about $3000 ahead.

My down time recommendations
I’d like to recommend Pillars of the Earth by Ken Follett about Masons building cathedrals in the 12th century. I listened to it on tape; 40 hours long (unabridged) and I could not turn it off. And then Keith and I recently saw a movie called Once. It’s a story of two musicians in Dublin who help each other at a critical time in their lives; the two starring role actors wrote all the music and lyrics. It’s a must see (for those of you sensitive to language, it’s salty).

And of course, I’m finally going to answer the question you’ve all been wondering about “Am I still itching?” YES!!!!! However, because it’s winter, and most places do not have the air conditioner blowing, I have not been freezing cold. In fact, our house is so well insulated I’ve been sleeping with the window cracked and with the fan on. Somehow not being cold has made my itching seem not such a pressing issue. But when I want to itch, I scratch since I know I’m going to anyway. Sorry Mom.

I hope this has satisfied the “all I ever wanted to know” bug. Keep praying!

Cathy insisted I put in when the prayer time for me is at Red River. It is the 3rd Saturday of the month from 6-8 p.m.

How much blood do I have?

2007-06-01T12:58:00.001-06:00

On Tuesday and Wednesday (5/29-30) I had my blood taken 7 times. Actually it would have been only 6 except in the main lab, the blood taker (what is that word? phelbolist???) forgot a tube and so had to take my blood again.

So update:
Spent a week in Houston having EKG's (7 on one day), lots of blood taken, and just hanging out. How can doing nothing make you sooooooo tired? Amazingly my skin is looking well... better. We are seeing some clearing. But we were seeing that even before I started the LDH. We (the royal we) are thinking it might be the BCX1777 leaving my system. Who knows. I'm just the Frankenstein on the table being experimented with and all I can say is agggggggggghhhhhh ;).

Itching: Comes and goes. I notice in Houston I'm not so dry (humidty still reigns in Houston). You guys think we have humidity in Austin, but I'm here to tell you "it ain't so." Sometimes I itch so bad I can't stop. Sometimes I start scratching but I can actually stop and I don't feel the driving, insane, I MUST SCRACTCH feeling. Ahhh that is much better. My skin is sooooo dry. Even after an hour of lathering tons of lotion on me, I'm dry. Of course the AC really dries out my skin.

Short Version of last 2 posts

2007-05-15T14:50:00.000-06:00

Thought I'd give those of you who don't have a lot of time to read my blog but want an update I'd just give you what my last week was like, day by day!

Monday, May 7th: I had scheduled, for my new drug study I'm doing, (see post after this one for more details) a bone marrow biopsy (BMB). A full body scan. Skin biopsies. Lots of blood taken.

When I got to the office where my BMB was to be performed, I discovered that because I had drank about 3 oz. of water to take my meds, I had to wait FOUR hours before the procedure could be done! Really! The rest of the day went as planned. However, I did not get to eat anything until about 3:00 p.m.

Tuesday, May 8th: This day I had my head/neck C/T scan. And an echo gram. When they were doing my heart, they saw something funny. And had to do a dye contrast. Thus I had 3 dye contrasts in 2 days. YUK! Ok, I was worn out by this time.

Wednesday, May 9th. I had a Dr's appt (ear/nose/throat) in Westlake. I was not feeling well and was running a fever. But, I needed to go. I also had 2 mystery shops (very easy ones... take less then 10 minutes to fill out the forms so I don't mind doing them... ). Keith was playing tennis and needed me to take the kids to Youth group and since my mystery shops were on the way back home, I agreed. Then it turned out that Keith's game got canceled. However, I said I would still go since I needed to do my mystery shops. Ok, so we are in the car and exiting off of 45th street and we hear this awful noise. We pull into Hancock center and I've got a flat tire! Long story short, I have Keith come and deal with van (and with the wonderful help of our great youth leader, Jesse).

So I take off in the Toyota. I do my first mystery shop at What-a-Burger. Everything goes great, I even got to order my favorite meal... the chicken strips! So I'm driving to my next shop and I'm at the corner of 290 west and IH 35. I'm in the right turn lane when suddenly I'm rear ended! Yes, you got that right. In the Toyota, AGAIN. Keith says he's just going to paint a target on it. Unfortunately, this time it was NOT Progressive but some absurd insurance company. So far we've talked, we have had an estimator come out, but I've not heard what they are planning to do about our car. And No, I did not call the police. I was so tired and felt so yucky! I'll keep you updated on the poor little car.

Thursday, May 10th - I don't even remember what I did that day :). Probably stayed in bed and tried to get with the insurance company. Oh yea, I got a call from Dr. Duvic's office and was told my potassium is too low for me to be a part of the new drug study! So in order to get my potassium up I've been gorging on bananas, potassium pills, etc. Please pray that it goes up otherwise I won't be able to participate. But here is the kicker, all those tests I did on Monday and Tuesday, you have to have the tests done within 2 weeks before starting the drug. So if my potassium goes up in say 3 weeks, then I have to do all the tests over again. I DON'T THINK so! I'll take that as sign from God that I'm not suppose to do the LDH, etc. drug study!

Friday, May 11th - Social Security called and said I had been approved. To read more about all that you can click here: Renee gets approved

So that was my week. This Sunday, 5/20, we go to Houston for a week of the new drug.

Sleeping, Flaking and a new adventure

2007-05-15T13:49:00.000-06:00

Some of you may be wondering what have I been doing since I retired on March 30th? Well, sleeping a lot. I usually don't get up before 11 am! Then I either wash a load of clothes or clean the kitchen and take a nap around 4pm. I have no idea how I worked the last 2 years. Ok, no comments please!

On my last appt. with Dr. Duvic, she really expressed how unhappy she is with the way I'm responding to the BXC1777 drug study. So I decided to try a new drug study... LBH589B. One thing this new drug is suppose to do is stop the ITCHING!

Before I actually start taking the drug, I must first be off any chemo for 30 days. So I took my last BCX1777 April 22nd. So far the only changes I can tell is my skin is really, really dry. I wake up in the morning with dry flaky skin all over my body. It doesn't matter how much lotion I put on, in an hour I'm very dry again. And of course the itching. Once I start itching I can't stop. It feels so GOOD to scratch! This itching is different than ever before. I feel like I have to scratch deep into my skin, to get into the inside of my lymph nodes. Since it the stupid lymphoma that causes the itching!

On May 6 and 7, I will go to Houston for tests. I will have a full body/neck/head CT scan, another bone marrow biopsy (which I decided this time to be put under sedation) and probably a couple of skin biopsies. In addition to all that I will have an echogram done. I think that's the correct term. This new drug can mess up your heart.

On May 21st when I take my first dose of the drug, I will have an echo done every 6 minutes. Yep, you read correctly. I think I have 10 of them done. I will be in Houston that entire week. I have Thursday off however from having to do tests! Fortunately, the drug company is paying for our hotel. Then after that week, I have to go to Houston every Monday and Wednesday for the month of June and then every Monday for as long as I'm on the drug . If anyone wants a day away from Austin, I'd love the company!

As I look at all this, I'm beginning to see that maybe a bone marrow transplant may not be all that bad! However, Dr. Duvic told me that two people had been put in total remission on this new drug, so I'm praying that will happen to me and the BMT will not be an issue.

We'll get this expedited...

2007-05-10T00:16:00.000-06:00

So said the very nice Social Security Disability case worker. Less than 51 minutes later I was assured that my first payment would be September. I know of a few of you who have applied for SS Disability. You have to fill out tons of paperwork. Which I did months of ago. Thus, I was so happy, since I had been denied at that time, I didn't have to fill out all that paperwork again. And who said that there's a lot red tape with the government? 51 minutes... :)

I was told, as everyone who gets SS Disability, you HAVE to wait 5 months from the date you apply or your last date of work.

Update: This past week (May 7th) I received a phone call from Social Security and I have been approved! And not only that but the children will also receive a stipend (is that the correct word?) Anyway, between what I will be getting and what we'll receive from the children, the total will be about $400.00 less than was bringing home. God is INCREDIBLE. I have to confess the way I've been feeling lately, I'm still to drained to anything to help make up any salary. (I can make up to $900.00 a month without penalty.)

Oh yea, the 5 month wait? Well that translate into like the 3rd Wednesday in October :)! They always pay a month behind.

Yet God is so incredibly good!!!

My life so far...

2007-03-21T17:44:00.000-06:00

Antibiotics that stink; Realization: I have cancer; Healing; Retirement!

These are just a few things that have transpired in my life in the last 2 months!

Antibiotics that stink:
First, I got an infection (imagine that... that makes about 15 since last Thanksgiving). The normal antibiotic I was taking should have taken care of the infection, but, alas I got this wild infection anyway. Funny thing when I went to my appt. at MD Anderson I actually prayed that the drs. would find something when they swabbed my body (they use a cue tip looking thing on a very long stick). Well my prayers were answered! So the dr. prescribed a new very potent antibiotic called Zyvox. Let me tell you a few side affects of this wonder drug:

Nausea - yep had that
Change your vision - yes... to the tune of $200.00 for new glasses
Itching - well OF COURSE!
Acute state of confusion - well sort of... ok I know many of you will dispute me on that!

I used the drug for 14 days and it was the most awful 2 weeks I can think of ... I was so miserable. Of course I was miserable since about December ... I think because of the infection.

Good news... as soon as I finished the meds I felt better!

Realization: I have cancer
Because of the infection, my numbers (my CD4s [bad t-cells] and my CD8s [good t-cells] went the wrong way. So Keith and I are sitting in a small examining room, with Dr Duvic, the 3 fellows and Carol, the drug study coordinator. Dr. Duvic suddenly swivels on her little stool and looks me right in the eye and says "Your numbers don't look good, so you need to make a decision on what you want to do." So Keith and I asked what are our options? Carol and Dr. Duvic start throwing out all sort of options. We both sat there with our mouths open. Finally I asked if they could e-mail us all the options they were throwing at us. No, but they could fax them to us. So later in the week, Keith and I get 47 pages of faxed pages. The faxed pages only contained 4 drug studies Dr. Duvic is involved with. It didn't have any information on options like: Total Body Radiation to get rid of these awful bumps I have all over my legs or other ideas that did not include some bizarre drug study!

So Keith and I took off the day and poured over these 47 pages of faxes. We also searched the web for other options for the curing or just easing of symptoms for those with mycosis fungoides and sezary cell syndrome. As I looked at and listened to Keith reading from various web pages I got more and more depressed. I finally realized this is a cancer that is going to be a great battle. I think I always thought I could handled this... it wouldn't be so bad... I'll get better soon...

Then all those thoughts were dashed under the weight of the realization that I have a rare and basically incurable cancer. (This is not to negate the fact that God can heal me!!)

Healing
A friend had called me earlier the week before all this happened. Keith kept reminding me to call her back. So I called her that night and she told me her and husband had been praying for me. Suddenly, Isaiah 58:11 came to her. And she knew that verse was just for me. Here is the verse:

The LORD will guide you always; He will satisfy your needs in a sun-scorched land
and will strengthen your frame. You will be like a well-watered garden,
like a spring whose waters never fail.

As I meditated on this verse I felt the Lord say that He is not taking me out of the sun-scored land (remember with this cancer my skin is very dry!), however He will be there with me and he will strengthen my bones (or frame). And I will be like a well-watered garden. And when people see this I will say it is the Lord who is satisfying my needs in this dry and scorched land!

As I came before the Lord, empty and depleted He met me in a amazing way. I realized the next day that the bumps on my legs had gone down considerably. I tried wearing "real" clothes rather than my pj's and I could actually stand the material on my legs and thighs. Not for all day but for most of the day! And each day my legs seem to be getting better and better! And, yes, for all of you who are asking... "How is the itching?" It comes and goes. Some days I hardly feel itching at all and other days I go crazy itching. But, I think I've got it figured out. I seem to itch more often when I get dressed really fast! There is something about clothes pressing against skin that is soaked in lotion that has not yet be absorbed that causes uncontrollable itching... so I wait about an hour before I put on ... well ok, you get the idea!

Retirement
Probably as many of you know as you who don't... but I applied for early retirement disability. Because I have 16 years and 2 months, I'm vested (which means my insurance is paid for by the state for the rest of my life!) Because I'm retiring so early, I'm not getting much in the way of monthly stipend, but fortunately it is enough to totally pay for the Keith and the kids insurance. This is a real blessing. As I discovered sleeping late every morning has done wonders for my thought process and how I feel. I realize I really need to take care of my body to promote healing and trying to work 40 hours or even 30 wasn't cutting it. I would come home each evening and go straight to bed. And then I would stay in bed all day Saturday. Thus, the reason why I've been so lax in keeping up this blog!

But back to my retirement... I applied back in December. We (the royal we) set my retirement for 2/28/07. Well, needless to say, the state agency I'm under took forever to fill out the paperwork. I don't even remember when they finally got it ... maybe end of February. Well I would check every week or so to see where we were in the process. My case worker told me that I had been approved by the medical board and commented it was the fastest approval she had ever seen! From there it had to go somewhere (I was never sure of that step), then it went to the attorneys and finally had to be signed by the director of ERS (employment retirement system). So here I am, March 19th and wondering where are we in the process... So yesterday I called my case worker but before she could call me back, Keith called and said the approval and a stack of papers had come in the mail! My new retirement date is now March 31! Yes as of this moment I only have 7 more days of work! I have such mixed feelings... on the one hand I'll miss everyone terribly, on the other hand I'm so tired I'll think I'll probably sleep the first 2 weeks of April!

P.S. My appt. this week with Dr. Duvic showed that my blood work was much better. Here are the results: my CD4 cells were 4106 on 2/21 and were 3572 on 3/6 (this is good... you want your CD4 cells to be between 205 and 1451) And my CD4/CD8 ration went from 120.25 on 2/21 to 107.67 on 3/6. Again you want them to be between 0.20 and 4.40. Got a ways to go on that end! However, I'm staying on the BCX1777 until further notice. Dr. Duvic said I could stop anytime I felt it wasn't working! However, I hope she would take me off this study drug if she felt it wasn't working, eh???

Well, I think that is enough information for tonight! Time to do my wraps.

Whiny report date log February 4, 2007!

2007-02-04T18:45:00.000-06:00

If you aren't in the mood for something whiny you probably don't want to read today's blog.

I think Job can explain exactly how I feel today:

6: 1-7 "If my misery could be weighed, if you could pile the whole bitter load on the scales,It would be heavier than all the sand of the sea! Is it any wonder that I'm screaming like a caged cat?The arrows of God Almighty are in me, poison arrows—and I'm poisoned all through! God has dumped the whole works on me.
8-13 "All I want is an answer to one prayer, a last request to be honored:Let God step on me—squash me like a bug, and be done with me for good.I'd at least have the satisfaction of not having blasphemed the Holy God, before being pressed past the limits.Where's the strength to keep my hopes up? What future do I have to keep me going?Do you think I have nerves of steel? Do you think I'm made of iron?Do you think I can pull myself up by my bootstraps? Why, I don't even have any boots!

You may be asking yourself why do I feel so down and depressed today. I think it's because I just keep itching all the time and the itching never stops unless I'm doing heavy drugs. I'm praying that it's just the weather, that because of the coldness and of the heaters being on all the time its just making my skin more dry. But I'm totally miserable and exhausted by all this. Each day I wake up and agonize over what can I wear today that won’t irritate my skin. I'm wearing pajamas to work. I'm wearing the same pants everyday and it's just been really tough on me. It takes my skin about 2 hours to calm down after I take a bath and before I can even concentrate on anything other than how miserable I feel. You may ask, why don't I get up earlier? Well if I go to bed before 11:30 p.m. then I wake up about 3:30 am and once I wake up, I wake up Keith and he can't go back to sleep. So in order for me to sleep until about 7am I can't go to sleep any earlier than 11:30 am and I'm trying to get to work by 9:30 (should be 9am) am at the latest! Which give me about an hour of totally misery. I'm sure people at work of sick of me! I warned you that this was going to be a very whiny blog, but I know in the end God is still good and He's getting at me through this.

Several things have happened this week to discourage me. One thing that happened was I had a horrible allergic reaction to some antibiotic cream that I put on my body. ALL OVER MY BODY. Because I'm scratching so much I have tiny cuts all over my body which in turn makes me itch more. The antibiotic cream, when I used it a couple of weeks ago actually helped clear up my body somewhat, but I'd forgotten that this cream caused an allergic reaction in me when I used it over a year ago; actually I have to confess I didn't really forget that, I was just praying that it wouldn't happen again. But it did and it totally wore me out on Thursday, Friday and Saturday (I slept until one Saturday afternoon). I was still wiped out today and hardly made it to church today and felt very uncomfortable and totally miserable with itching and my skin being so sensitive. In fact I wore flannel pj's turned inside out because the seam bothered me so much. It's back to 100% polyester pj's.

On top of all this my blood pressure kept rising so much that they had me put me on blood pressure medicine and which made me swell up like a little piggy. However once I took the diuretics I actually lost 8 pounds overnight. I still feel like my face is very puffy and that I look like a blockhead! This is not helping my self-esteem either. To top it all off everyone keeps telling me how good I look! HA! I wish I felt as good as I look to others. Actually what's even more frustrating is my skin is looking better. My arms, torso, and back are spouting new, real, honest skin! Now my legs are a different story. My legs have, well it's like large pebbles under my skin. Once I am settled down, my legs don't bother me until I move. Then it’s like the pebbles stretch my skin and pressing tight against my skin; on my thighs especially. It's very painful.

And you may be asking yourself what is going on with my early retirement disability? My paperwork had been sent to Employee Retirement System (ERS) sometime week. On Friday I decided to call the man who is supposed to be handling my account. When I called this is the message I heard on his answering machine "I have been assigned to a special project please call" and he left a number to call. So at this point I have no idea where my paperwork is or if anyone is even handling my account or has my paperwork. I am expecting a call sometime tomorrow or Tuesday at the latest and I'm looking forward to talking to someone soon.

Ok, now for some good news. I found out that I can keep Keith and the children on my insurance for what I'm paying right now which is only $401.00 a month (that's health and dental). This is such a blessing from the Lord because we won't have to worry about high deductibles or purchasing catastrophic insurance.

The next thing I'm about to share has mixed blessings. The other day one of my fellows, that is a doctor who's working with on my drug study, called me to check on how I was doing! Isn't it great when your doctor actually calls you without you prompting them? Anyway sweet Short-V dr., was asking how i was doing. I began telling her how bad I was itching and how miserable I was... you know whine, whine, whine! She asked me if I was doing the whirlpool baths. THE WHAT? I asked what whirlpool baths? This was the first I had ever heard about whirlpool baths. She informed me they gave these instructions to all their Sezary Syndrome patients! Oh yea? And were had my instructions been?? It seems I am to sit in a whirlpool bath from 15 to 30 minute with Hibiclens (an antibiotic type soap). Anyway, I should be taking these baths each night before I do my wraps! Though this is added an extra hour to our regiment every night, which makes it harder on my husband... more he has to do and the longer it takes. I can see some difference in my skin and it is kind of nice to lie in the bathtub and have the whirlpool buffet my skin! It helps the itching even if it's just while I'm in the tub but alas not once I'm out. You know I was thinking to myself what if I didn't have a Jacuzzi tub like I do? How would I make like a Jacuzzi? I guess you could throw your dog into the tub and have him dog paddle around for while, throw him out and get in while the water is still churning. See another blessing, God had us buy this house before we even knew I had a weird cancer! I'm certainly giving the whirlpool a work out!

Thanks for listening to me whine and forgive me if I’ve not replied to your e-mails or have called you lately!

P.S. special note to my mom if she reads this …. REALLY I’m ok, I just needed to vent a little! Even David, a man after God’s own heart whined once in a while!

Update on my retirement

2007-01-04T09:49:00.000-06:00

Ok, here is where I stand... they (social security) had to deny me because I'm working right now. I'm trying to get all my paperwork in for retirement from the state, which if approved then I have my insurance paid for the rest of my natural life... very important when you have stage 4 cancer, eh? As soon as I quit work, hopefully by 2/28 then I can re-apply to Social Security. However, I'm thinking more likely it's going to be March because not all the required paperwork has been submitted. We are waiting on my employer's piece and Dr. Duvic's piece. Which entails several detailed pages for them to fill out. That's bureaucracy for you, eh?

So as soon as I'm no longer working then I can apply again for social security disability. Then it takes 5 months for them to make a decision. But I have only 60 days to reapply w/out having to do all the paperwork again. And I think my 60 days start sometime this week. The counselor at SS was very nice and is really working with me. She said she'd deny me after she got back from vacation to give me more time, but silly me I forgot to ask when that would be!

But here's the deal. The state takes normally 2-4 months to approve/disapprove a disability retirement. I don't know when the paperwork from Dr Duvic is coming and the people here at work are just now getting all the information today. Even though I gave it to them last year :).

If I don't quit by 2/28 then I have to start all over again applying with social security because my 60 days will have expired. To apply it takes about 7 hours worth of work. You have to fill out all sorts of stuff and apparently they don't save all the work if I have to reapply. If I can get in under the 60 days then all my hard work is saved until June. Weird huh? Once again bureaucracy rules!!!

So I'm looking at all my options. We could go thru March of course without me working, however, what if the state denies my disability? Which I don't think they will as I have very compelling letters from my doctors saying that I really need to quit work! My primary wouldn't even write me a note requesting I work only 30 hours a week because he said I just need to quit! Period.

So, these are my prayer requests: That God's will be done and He be in charge of this whole thing! Specifically that His timing will be the ruling force and not mans. that I will find favor with man. I'm not really stressed out about this, I feel His presence and know He is going to take care of me! Besides, I'm ONE person who LOVES change and the unknown!!!

Updates

2006-12-23T20:50:00.000-06:00

I don't know where to begin.

Let's see the Candida... I decided to see a nutritionist. I made an appointment with our local People's Pharmacy who are reknown for helping people with this very thing... and all with stuff that does the body good. Well, before I had the appointment, a small miracle happened! Keith was talking with a friend from church and asked her how pharmacy school was going. She said it's not... I've become a nutritionist. WOW! And she added she was able to keep her dad off of dialysis for a year. Well you can figure it out... I cancelled my appointment and made one with sweet Nikki.

She did this test on me to see how well I absorb nutrients. It's called the biomarkers of health. She placed little metal plates on my hand and foot (kind of like when you get an EKG). It tested my Phase Angle... which reflects cell membane integrity and over-all cellular health and function. For my age my marker should have been >6.6 and mine was 5.7... Not bad, eh? And then it tested my Intracellular water... this increases cell health. For my age it should be >54.2 and mine was 51.7.

Also, she took me off all grains and sugar! Actually its not been that hard. I did, one day, decide to eat one of the Christmas goodies I got... a little peanut butter cake with a chocolate drop. Well, I got tell ya, I've not been that high since... oh well, let's not go there! I was dizzy, sick to my stomach, shaking. YUK! I have eaten very little pieces of candy (like my mom's wonderful Christmas fudge) with out effect. But I guess I have to lay off anything that's bigger than my thumbnail!

I'm taking Whey Powder, a probiotic that had 4 billion live enzymes (but now I'm down to only about 250 million because the 4 billion are too expensive), IgG2000DF, a hemoglobin... I make this into a shake with Almond milk every morning. It really is quite tasty. This is all to get my gut back into shape and eliminate the Candida.

I think I feel better... but right now I can't tell because I've got an awful cold. And of course, I had to take more antibiotics for it. I can't win! But at the end of the day, God is still good!

Applying for Disability

2006-12-23T18:50:00.000-06:00

My father-in-law kept telling my husband that I could take early retirement from the State if I was disabled. What this would mean for me is that my health insurance will be paid for for the rest of my life! So we checked into it and it's true. So I'm applying for early retirement. Target retirement date is 2/28/07. And I'm also applying for Social Security Disability. The catch is I can't be making more than $900/month in order to be approved for SSD. So Keith and I are biting the bullet and as soon as I get approved for my state retirement, I'm quitting work.

Since after Thanksgiving, I've been trying to work 40 hours a week. And this is my 3rd infection since then. And this cold I have now is a doozy and here it is the night before Christmas eve and I feel pretty lousy.

When I went to see my dr. for this infection we were talking about me ... well I was talking about me working 30 hours a week and he said I should be working NO hours a week. He said he couldn't believe I had worked this long. But, with a bone marrow transplant being talked about and having to pay for all my cancer treatment, I had no idea I had any other choice. And frankly I'm just plain worn out. So pray that God will let me find favor with the state retirement and especially with SSD. We have an appointment on Dec. 29th.

Merry Christmas to you all. May the Lord bless all you put your hand to in 2007! I can't express enough the support you all have been to me!

Candida... My acupuncturist finally was right

2006-12-02T08:01:00.000-06:00

I stopped the Amoxcillian yesterday and did not wake up last night in a frenzy of wild itching. However, when I called the good docs at MD Anderson, Dr. Vu told me I had Candida in my throat. And I bet I've got it all over my body. Here is some information about Candida.

Ok, let's skip to the chase... here is one guy's list:
The Third Stage of Candida Symptoms may involve MENTAL and BEHAVIORAL RESPONSES: Inability to concentrate, not being able to read or follow a television program or carry on a hobby, serious forgetfulness, memory loss, mental confusion, not being able to think of the words to say something, switching around of words and letters when trying to speak and/or write something,

Uh, I think that might apply to me.

Oh my read this... I've been on a sweet tooth rage now for weeks:

Yeast may overgrow when antibiotics, medications, drugs, birth control and hormone pills, and steroids (such as Prednisone and Cortisone) are taken. These medications tend to kill the good bacteria in addition to the bad bacteria that caused the present illness. This allows the yeast to reign freely until our Immune System beats it back once again. (note from me: What immune system?)

The typical modern diet facilitates the problem. Refined sugars and high starch/carbohydrate foods give the yeast exactly what it needs to flourish. (This is why we add sugar or honey to the yeast when we make bread! This is also why so many people CRAVE sweets and breads just as badly as an alcoholic craves alcohol--the yeast is screaming for fuel to keep ever growing!)

Another factor allowing yeast overgrowth is STRESS. Stress depresses or even shuts down the Immune System. It is noted that following a great stress (such as the loss of a mate) a person is more than likely to become seriously ill within the next year, as a result of that stress on the body.

I do believe I'm under a little stress. And since I've been on anti-biotics now for 18 months... well my body is probably a ripe ground for Candida.

To be continued...

Amoxicillian

2006-12-01T11:58:00.000-06:00

I think I'm allergic to amoxicillian now. Since starting it on Monday for some odd infection, I've awaken at 3am, 4am and 5am each day this week (week of 11/27) itching horribly!

Date Log: 11/27/06: Good News & so-so News

2006-11-27T23:38:00.000-06:00

Yea! Dr. Duvic was happy w/my obvious improvement of my skin. The bumps/pebbles/sugar pops are less. I'm whiter... and this white woman can dance!

However, I don't know what my numbers are... the numbers that really tell how the cancer is or isn't. I did a blood draw (well really about 8 vials) to see what my numbers will be... the cd4/cd8 & sezary cell count. When I go back on 12/11 I'll know if the BCX1777 is affecting the bad T-cells too. I had one small lymph node, the others are still insignificant. Which means this drug must be working.

These tests can really tell the story of where my cancer is, BECAUSE I can't. Why do I say this? Because I'm running a 100 degree fever, which is really high for me and my throat is spotted with puss and my b/p was 192/92. Now when I had my B/P taken at work the other day it was 120/78. White coat syndrome? Who knows.

But back to me being sick. This is not good because this is what will put you in the hospital. So even though my skin is looking better I'm still very auto immuned compromised. So I'm back on antibiotics which makes me more immune compromised which ... well you get the idea.

so good news and bad news. Pray that I will find a way to build up my immune system ... a way that won't cost me money having to go to a herbalist and spending lots of money on herbs. It always seems it costs money to be healthy naturally. Ok, I don't think I'm making much sense but thanks for listening to me.

Oh I forgot 2 things - A God Moment

2006-11-23T08:35:00.000-06:00

See my note on Thrush. When I went to the drs. after the weekend when my thrush was healed...I stuck my tongue out at Dr. Vu and she said "Your thrush is gone. Wow that medicine works good." I told her I had used it ONE time. Funny thing is that Bill Johnson had a "word" about the "inside" of the mouth. My lips still have thrush! So I've been using the medicine!

On Saturday night when I went to the meeting, my neck was killing me from my accident (see on my way to Houston). It hadn't hurt like this at all. So I got prayed for. When I went to see my Chiropractor on Tuesday and he was adjusting me I asked, "So how does my neck and back feel?" He gave me thumbs up and I said, "So does my neck and back and feel like it did before my accident?" He said, "Yea, it does!" Another touched body. Wish this stupid old MF/Sezary cell would respond as quickly.

Ok, this Texas girl is off to make Northern turkey dressing that only she will eat. But the family (my in-laws) will say several times thru the meal, "Its good Renee, it's just like eating dessert though." I put raisins and pecans in my white bread dressing! What can I say? My mom grew up in Detroit and my dad, though born and raised in Texas, had good taste buds. I must say my mother-in-law does make the only and best cornbread dressing I've ever eaten. Not that I've eaten a lot, I try and avoid it... you know Luby's dressing with the yellow gravy with eggs in it? EWWWWWWW weeee, can't abide by that. Ok, now I'll ask forgiveness of all of you eat that stuff!

Date Log: 11/23/06... Wow a month from my last update

2006-11-23T07:51:00.000-06:00

Ok, what has happened this last month.

1. I was seeing some real clearing on my feet. But that has seem to gone away.
2. Good news: My lymph nodes have gone down or are gone completely.
3. Bad news? My blood work doesn't show much improvement. May know better this coming Monday (the 27th)
4. I've got pebbly skin. Yes, my thighs are thick and look like they have sugar pops, my rendition, or pebbles, Dr. D's rendition, stuck under my skin. This makes it difficult to sit and squat... which since I've moved my office this last week, I'll be squatting a lot to put all my books in place, etc. Dr. D suggested we wait 4 weeks to see how the "pebble" situation plays out. She thinks it's an reaction to being OFF the Targretin! Weird, huh?
5. I'm feeling a lot of stress. It's effecting my memory. Not sure if it's the meds, or just that there are circumstances that are playing into this affect. At least I don't feel depressed on this drug. Which is one reason why I will fight to stay on it,
6. I am seeing real skin, cleared skin on my arms.
7. My internal temperature seems to have gone whacko again. But then again it might be that it is the low 70's in Austin, cold for me, but not cold enough for "real" people to turn on the heat.
8. I do seem to be itching more, but then again it comes an goes. For instance today I woke up and my arms were itching very badly. I took my Gabapentin and Atarax and I'm beginning to calm down.
9. Because of the cold, no moisture in the air, I've been taking that combo. That may be adding to my spaciness.
10. I'm probably not putting lotion on enough times during the day. But it just feel awful. Cold, wet, and makes me itch until it dries.
11. My feet/ankles are very swollen this week, but I attribute that to the fact that I moved offices and was on my feet about 8 hours a day this week.
12. I still can not stand to be in clothes for more than 8 hours. 100% polyester (or silk when I can afford it) pjs are the only thing that feel comfortable.
13. I wore my nice pj bottoms to work on Monday and Tuesday (though Tuesday's pj weren't 100% polyester and I could tell at the end of the day.) That seemed to help a lot. I need to find other pjs that don't look so "pjish".
14. The cuts on my feet had almost cleared but today I have several cuts... wonder if its from being on my feet on all week with the moving? Makes sense.
15. The first week of November I slept HORRIBLY! Made my hours at work suffer. Or it might have been the 2nd week. But that has ended, thank you JESUS! Wonder if it might be related to menopause/period stuff? Need to keep an eye on that. And, sorry, I guess that is more information than you needed to know, right?

I'll let you all know what Dr. Duvic says on Monday.

No More Thrush

2006-10-28T00:23:00.000-06:00

Yes, you heard me correctly. Tonight my mom and I went to a church service which was conducted by Bill Johnson http://www.ibethel.org/. This man has been anointed by God for healing. He spoke about how the Kingdom of God is at hand. That means just that... it's right here ... at hand. You may be familiar with verses that say that which is bound on earth is bound in heaven, that which is loosed on earth is loosed in heaven. The actual translation is that which is loosed on earth has ALREADY been loosed in heaven and that which is bound on earth has ALREADY been bound in heaven. So cancer is bound in heaven, it doesn't exist in heaven, so because of that I have the power thru Jesus Christ to bind it on earth.

But back to my thrush. After Bill spoke he had words of knowledge (things shown to him by God). He asked if anyone had sores in their mouth. Well, thrush countedm right? So I raised my hand. He was rattling off a lot of other problems: back aches, broken legs, eye problems, etc. People were raising their hands left and right. They counted 138 people who felt a difference in their pain, ability to move, etc.

He then had people around us pray for us. My tongue began tingling and then it didn't feel so thick. The roof of my mouth felt like when you burn it... like a bunch of skin had come off the roof of my mouth, but it didn't hurt.

I had my mom look at my tongue and it wasn't thick with white gunk!!!

And my mom has been having this "bubble" when she looked straight out of her right eye. An 11th grader prayed for her. And the bubble went away. It was amazing. She said she always thought this "stuff", being prayed for and healings were just a hoax. I think God changed her mind!

When we went to eat, she was closing her left eye and kept shaking her head and I kept sticking out my tongue and feeling the roof of my mouth. I wonder what the people around us thought??

I'm praying for all of you!

Oh yea, a lady in front of me prayed for me without me telling her anything. She prayed that the dryness would go away and my oil glands would work! Wow, if I wasn't dry then I'd probably not itch... ya think???

Real Skin and Thrush

2006-10-26T20:46:00.000-06:00

I can see real skin... on my feet. It's amazing. It's pink, it's smooth, you can actually see veins thru it ;). I think the BCX-1777 is working! As it turns out I'm on the highest dose, which is 300 mg. a day (that's 3-100mg pills each).

Today at my dr.'s appt., Dr. Vu took a light and checked my eyes and my mouth. I said I don't ever remember that being part of my assessment. When she checked my mouth, she did a double take and had me stick out my tongue, lift up my tongue, stick it out again, lift it again and proclaimed "You have thrush!" Wow that explains a lot of things. Like why good things taste so weird. And maybe when I did my mystery shop (if you want to know more about mystery shops go here http://www.volition.com/mysteryUSA2.html and don't EVER pay for a list of mystery shopping companies) anyway, when I did my mystery shop the other night, I said the coke was flat. Maybe it wasn't??? Drats, I hope I didn't make an incorrect accusation! I can't believe I have thrush. When I asked Dr. Vu why??? Why??? She said in her sweet voice "Honey, you are autoimmune compromised." Oh yea. I forget sometimes because I feel better. But I'm not contagious! But it's still good to remember I still need to take care of myself!

I'm still itching pretty bad, badly, awful, a lot... what ever the correct English is. But since I'm seeing such good results I'm just hanging in there. [If you read my report about getting hit by a car and that I was somehow not itching... well I realized that I had not taken my BCX-1777 from Sunday morning until Tuesday afternoon. So this drug does make me itch more.] But I'm going to keep hanging on because I'm seeing results even if its just by the tips of my fingers... since I still don't have any nails.

I do have these funky hard cuticle kinda of gross things where nails go, but they are short. Oh, I found out it takes THREE years for your nails to grow back. So do I count from when I started getting treatment? 17 months ago? Or when I started getting something like nails back? 10, 9, 8 months ago? I don't know. I just would like to have a nail so I could pick up my tongue depressor (my scratcher for those of you who are new here) when I drop it on the ground, which I tend to do a lot. I have to step on it and kinda get the end to pop up to pick it up or use my keys, or a credit card or anything to get under it. One day I dropped it and tried for about a minute to pick it up and finally the guy behind reached down and handed it to me. Thank you. Sometimes when I ask people to help me and I comment I don't have any fingernails, they will say "Oh I don't have any fingernails, either" and I'll say NO I don't have ANY fingernails. I mean I don't, ok?? Only I hope I say it nicer than that!

I was told this week I was a little short with one of my co-workers. I felt awful! I'm so glad she told me because, just because I don't feel good is no excuse to be short or rude. So for those of you who know me, please if I act impatient with you please tell me! God's grace is abundant and I need to tap into His grace. It's there for me!

Well that is all I have to report. I see Dr. Duvic on Monday and she will make the true proclamation about my progress!

Oh, how could I forget!! I wore my red high heel shoes today and NO BAND-AIDs!!! Now if I would just quit scratching my feet and not open up any more craters!

Date Log: 10/16/06 While on my way to Houston...

2006-10-17T05:47:00.000-06:00

Well, dear friends, I said I'd report what the good drs. said about my response to the BCX-1777. Well I never made it to Houston. Instead I spent my morning dealing with that! See the picture! I had just left Austin city limits and was at a red light in Manor, (pronounced may-nor... not like man-or) TX. As the light changed green, I heard a siren. I looked in my rear-view mirror, saw a black truck behind me and then on the cross street a police car screaming thru the intersection. So I stayed stopped even though the light was green, again checking behind me to make sure the guy (Frank was his name) in the truck behind me was "tracking" with me! And as I found out later, Frank's son is a policeman with Manor police department, so Frank was the "required" 10-12 feet behind me and he was staying put! Suddenly, BAM! I jumped out of my car and this young kid comes racing up to me cussing wildly. He kept saying the "s" word and exclaiming "I'm going to jail." This young man, let's just call him D ;), was driving a Runner 4x4 with the huge black grill in front and jacked up pretty high. The pickup truck behind me had been pushed into me when D hit him. Frank told me they had just picked up several bags of cement. I think that might have saved both of us... the bags of cement took the impact for us. Frank's truck bed was smashed in about 6 feet and pushed down so the bed of the truck was dragging. As I said, the 4x4 runner was jacked up pretty high. I think if D had hit me, I would have his truck in my backseat. So God was already watching over us.

And Houston? Well Houston was flooding so bad they weren't running bus service for the children to go to school. So it worked out, kinda sorta of, good that I didn't venture down there.

D suggested we move off the highway. Frank said no, let's stay to wait for the police however D said, "No I did it, I hit ya'll (that Texan for you for those of you in the North). So I got back in my car with the bumper hanging by a thread (the picture was taken after the bumper was removed and the trunk was tied down with a coat hanger!) and moved over into a parking lot.

A fire truck came and checked on us. As I was looking around I was counting six cars and 6 men and me. As it turned out the next lane over also had a 3 car pileup too! It was pouring down rain; we're all on our cells phones... I guess you can't get electrical shock doing that, and D kept saying "s" I'm going to jail. Two policemen show up and they figure out we have 2 different wrecks happening in the same way. A young man in a Toyota pickup truck hit the 2 cars next to me. One was a rental car (and YES the guy did take all the full insurance on it... which is a good thing because there back window was totally gone and it was smashed pretty bad, but not as bad as mine.) the front car in that wreck was a Volvo. It had a little scratch on the bumper! Where were the cameras, we needed to make a commercial then and there! It is the safer vehicle!

So the 2 policeman are talking and one policeman said, Ok you take the north lane with my dad and I'll take the south lane. His dad, Frank, was in the car that was pushed into me! So the policeman asked for our driver's licensees and insurance card. I'm standing next to D and the policeman asked for his insurance and license. He handed him his insurance card and said he didn't have his license on him. By this time it's pouring down rain... my tennis shoes are still wet as I write this 12 hours later. The police tell us we can go wait in our cars until he is ready to get our statements.

I'm sitting in my car talking on the phone with my boss, when I see them put handcuffs on D and start patting him down. I think this is a little odd. Next thing I see, a policeman has stepped in the bed of D's pickup truck and has opened that metal box a lot of pickup trucks have. Next I see him pull out a gun. A big gun. No, not like a rifle, but as a policeman told me later a 9mm Glock! I'm not really shocked, this is Texas after all. Next the policeman is holding up one of those gallon Ziploc baggie filled with Marijuana! I think to myself, oh yea, you're going to jail. I believe, even in Texas Glocks are illegal unless you are FBI. Feel free to correct me if I'm wrong. You know the funny thing about the Glock... I love to listen to murder mysteries while driving back and forth from Austin to Houston, and just the other day I asked a cop at MD Anderson, "Is that a Glock?" Because I really wanted to see one. Turned out it was his Tazer. We in Austin know a lot about Tazers! A bit later, I see a policeman standing next to one of those huge coolers from D's truck that just so happens to be filled with ice cold beer. The cop is pouring out all the beer. As I walk by one spews all over his pants!

My neck starts hurting so I grab my Advil usually reserved for my cut feet and down 3 with my water bottle. Then I think well maybe some of these other guys need some Advil. So I start passing out Advil. One guy from the south lane wreck, takes 2 and grabs my water bottle and drinks down. My how a car wreck can bring folks together. The other 2 guys in that lane decline my offer and my water bottle, thank heavens! I go over to the Frank and offer him some Advil and his companion. He takes 2 and tells me 3 months ago he had open heart surgery and currently has stitches in his neck down his back. So I offer to pray for him, which he lets me.

Finally a cop brings me back my driver's license and insurance card. I get information on D's insurance which just so happens to be Progressive! When I was talking to them later that day I said "You know your reputation has preceded you!"

Ok, get this... the insurance agent tells me we can't do anything about my car until he can talk to D. Which, he continues, he understands is in jail. But, the insurance agent has talked to D's mom and she assures him that D will be out of jail soon. Ok, the guy has drugs, he's carrying a gun, he has cooler (big cooler) filled with beer and now he's lying to his mama???

Tuesday, October 17, 2006:
So today my mom takes me to Houston, tomorrow I deal with the insurance (hopefully if D has given his statement yet) probably all day. Wow what a start to my week.

Oh yea, I'm not real sore this morning. But ever once in a while I feel a really sharp pain in my neck. Maybe it's just this all is a pain in my neck! But, hey my itching is better. Not sure if that was due to the fact that I fell asleep with my wraps on for 3 hours or I was so distracted about all the above!

P.S. for some reason I can't get the picture of my smashed car to show up. But trust me, it's smashed - ;) - R

Date Log: 10/15/06: Will the Itching ever stop?

2006-10-15T18:01:00.000-06:00

One of the side effects, well, really the ONLY side effect that has been reported with the BCX-1777 is swelling. Last night I looked down and someone had inserted a medium size lemon under my skin right at the ankle!! My husband said it looked like I had sprained my ankle. My left ankle wasn't swollen like the right. I could actually see a little of my ankle bone... enough probably to have caused some gossip 100 years ago! They are better today.

My feet, on top, are actually white. Well except for the red spots where I have scratched them to death. And the skin looks almost human. I was talking with a friend the other day, facing her and a window. She kept looking at me strangely, then she said, "Renee I think I see some actual skin on your face."

So, I do see changes. Some good changes, but THIS ITCHING! I want to hang in here, but it is not easy. As many of you know, it just exhausts you having to deal with your itching, dryness, flakiness, and all those other "iness"! I'm just plain tired. However, as I can see improvement on my skin, I'm going to stick this out.

Tomorrow, 10/16, I drive to Houston for week 3. I'll let you know what the good doctors say. Please just pray for the itching to stop!!

Oh BTW, some of my smarter colleagues figured out I'm about one in 4 million!

Date Log 10/12/06: Validation & Day 10

2006-10-12T21:44:00.000-06:00

I can now blame my dinginess on a real live medical reason! Chemofog/Chemobrain

Definition of Chemobrain
Chemobrain: Cognitive dysfunction associated with chemotherapy. It is thought that chemotherapy may cause memory loss, attention loss, and other problems that make it difficult for patients to think clearly. Also known as chemo-brain, chemo-fog, and chemotherapy-related cognitive dysfunction.

I think this counts even though my chemo comes in pill form!

Ways to know you are experiencing chemobrain:
1. You are in the shower shaving your legs. You finish shaving, but being blind, you reach down to make sure you didn't miss any spots. WOW you think my left leg really feels smooth and hair free. Then you feel your right leg and as your hand runs up your leg you feel hair. (yes, I shaved my left leg twice!)

2. You finally make it to the gym. You are feeling good. You've got your tunes going on your MP3 player. Your strutting, excited, you are going to WORK out. As you swing into the bathroom, you pause... you think "I thought the sinks were on the right side, not the left side...?" Then you realize you are in the men's locker room. You slink out... hoping no one noticed!

I think I can tell a difference in my skin. I'm still itching. (Thanks for all the great ideas!) Dr. Tapular said today that people on the BCX1777 do experience itching. But she thinks it's because its breaking up the T-cells. I forgot to ask if once someone is clear does the itching stop??? And they said this drug had no side affects! HELLO? Itching is one the main reasons why we are here! I think sometimes if I didn't itch I wouldn't even know I had cancer!!

I'm one in a ????

Ok, this is for all you mathematicians out there. Out 100,000 people only 0.40 have Pautrier-type abscesses (something found in my last biopsy), only 0.15 have Sezary Cell Syndrome and only 0.45 have MF. So if you, if you... if you what? Multiply this and divide by 100,000? Something like that... anyway, I'm one in whatever that number would be! I feel sooooooooo special!

Symptoms of Hypothyroidism

2006-10-11T09:38:00.000-06:00

I just looked up the symptoms of hypothyroidism and here is the list:

Symptoms of Hypothyroidism

Fatigue
Weakness
Weight gain or increased difficulty losing weight
Coarse, dry hair
Dry, rough pale skin
Hair loss
Cold intolerance (can't tolerate the cold like those around you)
Muscle cramps and frequent muscle aches
Constipation
Depression
Irritability
Memory loss
Abnormal menstrual cycles
Decreased libido

So this explains some things going on with me. Dry, rough (PALE??) skin. Ok I don't fit that bill. Memory loss!!! Yea, I have a medical condition to blame my memory loss on! Weight gain, another bonus...it's not those hot fudge sundaes that's making me fat, it's my hypothyroidism (just kidding).

Anyway, I'm praying this is the cause of my itching. Today it is AWFUL! I can barely think or work.

DateLog: 10/9/06: Drug Study - Day 8

2006-10-09T21:14:00.000-06:00

Here are some numbers for you:

My CD4's (those are the bad cd cells) went from 526 on 8/3/06 to 83.1 on 9/15/06 to 1523 on 10/2/06.
My cd4/cd8 ratio (you want it to be zero) went from 12.91 on 8/3/06 to 25.97 on 9/15/06 50.56 on 10/2/06.

My last dose of Targretin was 9/6/06. Targretin does work, obviously, for me at least.

My visit today went well. Dr. Tuplar, who has been checking me from the start of my drug study was very pleased. She thought I looked less red already. She marked me as having only about 26% involvement. However, 2 hours later (well ok, not quite that long, but all you Dr. Duvic patients out there you know what I mean!) when Dr. Duvic came in I was all red again! But, she did say she could see a difference in my skin already. Although she changed my involvement to about 65%.

I'm sorry to say, though, the itching feels worse, not better! But maybe it is true as my sweet little niece tells her patients who have just delivered a large baby... "Honey it itches because those stitches are healing!" So I'm just healing... though there is no baby and no stitches! Oh, here's something... I was just looking at the sheet that Dr. Duvic fills out... and my thyroid (TSH) was 7.16. I think when you TSH is high you are drier. I was 0.79 on 9/15/06. So I'm back on my Synthroid to bring my TSH back down! I hope that's all it is. I'm get so weary from scratching and itching all the live long day. And the Lord knows how much my itching drives everyone else nuts!

Date Log 10/9/06: God Moments II

2006-10-09T20:26:00.000-06:00

As I put paper to pencil, or in this case, keyboard to blog; I don't want you to think "poor Renee" or "oh Renee :(" as I share the following. I'll share and then I'll explain my purpose.

Dr. Duvic wrote that MF was one of the most disfiguring diseases known to man. Well I can attest to that. In the last 2 months I've been called Keith's (my husband who is, granted, 3 years younger than me) mother by someone who was just guessing and offered the senior discount which was for 55 and older; and this:

My oldest son, Luke, who is slightly autistic, was holding hands with me yesterday. When I grabbed his hand, he went, "ewww" and looked at my hand. I said, "Does this bother you?" He replied, "Yes, I will pray that you will not be such a revolting woman."

I share this with you, especially those of you with family who have this cancer, that this cancer isn't always "detected" by weight loss, hair loss, or other visible changes we've come to think of as "that person looks as if they have/had cancer." However, it can in some ways be more devasting, because it is there, hidden in a way. If you know human nature you know that we don't really "look" at each other. However, I'm constantly reminded I have a strange disease. If it's not someone offering me the senior discount; it's someone asking me "Where did you get that tan?" (not such a bad question).

I've spoken with others who have this cancer and a common comment is "Oh you look fine, you must not be sick anymore!" Good news is that most people die "with MF" rather than "from MF". However, we still have cancer. A cancer that can't be cured with conventional medicine. A cancer that can't be stopped or arrested by cutting something out and having 8 rounds of chemo. It is time-consuming, ever present, costly, irritating, frustrating, vexing... ok, you get the idea. But, I say and again I say God is STILL GOOD. He is GOOD all the time. And it is only by His grace that I'm able to live and endure!

But, here is the really good news! When Keith was holding my hand this morning, he said "I think your hand feels smoother." The prayers of a child go straight to the heart of God and He listens. I for one am glad my son is praying "that I won't be such a revolting woman." I know God listens!!!

DateLog: 10/6/06: Drug Study - Day 5

2006-10-06T08:48:00.000-06:00

What a week. As I tried to wake up this morning, I realized that I had been "up" for the task earlier this week. And now that I'm home I crashed. Being a very high energy person, it's hard for me to be in touch with my body. I just go and go and go. I used to be able to do this with no problem. But not anymore!

How am I feeling? I'm very very dry. I'm flaking like crazy! I've been off my oral Targretin for 4 weeks now... and only 5 days of the new drug. Spending the last 4 days in Houston, I'm praying the dryness is from the showers. We have a water softener at home and I can tell when the salt is low because I'll itch more. So 4 showers in semi-hard water really took a toll on my body.

Last night, after I did my wraps, I did my best to cover my body in lotion (my usual routine). Never being limber, there is always this square (some name I can't think of: square with two sides equal...) on my back about 6 inches wide at the top and about 4 inches at the bottom that I can never get. You can actually see it distinctly ... there is such a noticeable difference between where lotion is applied and where it's not. As I laid down in my 100% polyester pj's I noticed my back felt like a million needles piercing my back. I "willed" my husband to wake up. He finally did and I had him "lotion" me up. It helped but not much.

I've not slept well since probably Sunday night. Not sure if that's due to the dryness or the drugs!

So to recap:
I'm more dry... water or drug?
I'm itching more... water, drug, or anti-biotics I'm on?
Not been sleeping... itching or the drug?

I'm almost finished with my anti-biotics, I'm home back with my water softener. I'll keep you updated as changes occur. Just pray none of this is the result of the new drug!

Also, I'm getting more cuts on my feet. Some of it is MY fault because I scratch, but I think its also because of the dryness. My skin is so tight. For instance I can't really straighten my hands because the skin is so tight. Works well for typing, but it scares small children since they look like a witches hand in a children's book. What are they doing drawing such scary looking witches in children's book anyway?

Thanks for listening.

DateLog: 10/5/06: Deep Thoughts - Toothbrushes

2006-10-05T16:25:00.000-06:00

The Toothbrush

If you get sick, like I have these past 2 weeks, when do you throw out your toothbrush. Do you throw it out when you realize you are sick? Do you keep it until your antibiotics kick in? When do they kick in? Do you start a new toothbrush after you know your antibiotics have kicked in, then do you throw that away when you finish your antibiotics (you DO finish all your antibiotics, don't you??!) Then when you get sick again, do you start all over, even if you've not finished the first referenced antibiotics?

What about those little travel toothbrush holders? Do you throw them away? What if you used that toothbrush only when you were well? What if you weren't sure if you were well or not... because how does it feel to feel well? Can you just wash out the travel toothbrush holder with Band-Aid Hurt-Free Antispetic Wash?

And then there is that whole thing about touching the toothpaste tube with the contaminated toothbrush. Will pouring alcohol in the lid and then placing it on the tube (upside down of course!) sterilize the tube? And then how do you put the toothpaste on the brush without touching the tube? Do you do a leaf motion, dragging the toothpaste along and then ending mid-air? As you do when decorating a cake? Or do you do the flower motion, squeezing lots of toothpaste on the brush and then lightly pushing down and then up? So many questions, so little time!

Comments and thoughts welcomed!

P.S. My cholesterol was 136 and my triglycerides were 88. Now really how can I be sick??

Date Log: 10/3/06: Week 1 of New Drug Study

2006-10-04T15:46:00.000-06:00

28 Vials!

On day one of the new drug study I was to have oh probably about 12 vials taken. But, wait, as I was getting ready for my first blood draw, Carol, the drug study coordinator, asked if they could take extra blood for another drug study. This one would just use my blood to begin testing some new drug they are working on. "Sure, why not?" I reply. I'm always willing to be a pin cushion in the name of science. So that added about 7 vials. Then, because I was not feeling really well, Dr. Duvic decided they needed to run a blood culture on me. That was another 5 or so vials. Then she decided she wanted a flow cymtery on me too... so that was another 6 vials. I think by 2pm that day I had given 18 vials. I began feeling sort of light headed since Keith and I were waiting to eat later that day. I grabbed some graham crackers and water and felt better.

The next day, I went in for my 11:30 a.m. blood draw and dose. They then told me that Dr. Duvic wanted a biopsy. When I asked Linda, who draws my blood, where?, she said in a room. In a room??? No, where on my body! So now I have had 30 vials of blood drawn, on 3 anti-biotics due to 2 infections and one just because and a hunk of my skin taken away.

Oh yes, I forgot, I got to collect all my urine for 24 hours. Anyone ever need to know where the nice bathrooms are at Clark Clinic (MD Anderson) just ask!

So far I can't tell anything. There is some really good news... I''m not pregnant! Whew... just one of those viles, I mean vials they took. So good to have medical confirmation that I'm not pregnant! The other good news, though not quite as exciting, is that I'm on the highest dose of the study medication. I take 3 pills all at once at about 11:30 a.m. everyday. This is wonderful, wonderful news because this means when I drive down on Mondays and Thursdays I don't have to be at MDA until 11:30 a.m. It is 2 hours and 48 minutes from our door to MDA. So just pray I can get out our door by 8:00 a.m. But as my feet are getting better, it only took me about 15 minutes today to get them ready for shoe wear rather than the 45 minutes I've been spending. So hopefully by next week I'll be down to about 10 minutes and that's it! Also, this $30.00 a week for bandaids is getting a little ridiculous. (I use the blister band aids, which really work good when they stay on, but because my body is enriched with lotions for the past year, things like band aids won't stick. So while I'm putting on one band aid, I'm trying to hold the one I just put on on (got that?) . Sometimes I feel like a dog chasing their tail. One falls off, I stop to fix it, the other falls off... yes it's a comedy of errors!

So I'm still itching and flaking... actually I'm itching, I think, more... but that could be because of the anti-biotics I'm on. Just a couple more days and I'll be off all but one! Not much else to report today, but check back weekly for updates if you wish!

DateLog: 9/30/06: God Moments

2006-09-30T09:14:00.000-06:00

While walking my new sweet dog, Madi, I walk by the First Baptist Church of Pflugerville. One day while walking by the church I felt like the Lord said, "Stop and have them pray for you!" Now I don't know how you know when God is speaking to you, but for me my heart pounds really fast. I continue walking, headed for the new Dazzle Coffee Kiosk in downtown Pflugerville, hoping it was only Madi tugging on the leash that was causing this rapid heart beat! On the way back, having forgotten my little "God" moment, I walked back the same way rather than taking an alternate route! Ha-ha! As I approached the church this time, tears pricked the back of my eyes... actually tears started rolling down my cheeks. But have you noticed how all novels always say "tears pricked the back of my/her/his eyes"? I just thought I'd continue to practice my writing skills! Ok, back to the story. So I'm not quite to the church yet, so I still have time. Time to bargain with God. "Ok, God if there is ONE person in the parking lot, then I will stop." See I'm pretty righteous, I didn't ask for 10 people, I knew that wasn't going to happen (just kidding... about the righteousness part). As I approached the parking lot, looking furtively around, I was relieved to find the parking lot free of anything human! So I walked on by, feeling ok for about 3 steps, then as the Holy Spirit began slowing my steps down. I finally gave up and sighing heavily turned around and went back to the church office. I approached the door, opened it, keeping Madi on the leash and said, "Uh, hi, uh, I think I'm suppose to, uh, ask you to pray for me." Well they welcomed me with open arms. It turns out they have a prayer room and they asked me to fill out a prayer sheet stating why I was in need of prayer and they would post it. I've already received one "prayergram" from someone praying for me.

When God asks us to do something that is hard, embarrassing, and/or difficult for us we never know what He is up too. I was blessed by this church and they even thanked ME for allowing them to pray for me. I have no idea what God wanted to happen with that interaction, or what He wants to do in me... but it is a privilege to be part of God's plan.

Keith found this quote in a book called, "Conversations Journal". It resonated with me and want to share it with you.

When suffering does not
destroy you, even though you
have been to the edge of the
abyss, you know something that
you cannot know in any other way.
Someone else is sustaining you.
You are indeed living by a life not
your own. Or as I love to say,
"Your life is not about you." It is
henceforth, most truly, about God.
And you are merely a "free sample"
of what God has always been
doing. - Quote from Richard Rohr

DateLog: 9/26/06: A new chapter

2006-09-26T12:16:00.000-06:00

I just wanted to let you know that this coming Monday, October 2 I'll be entering a drug study at MD Anderson. The drug, called BCX17777-C-04-105. It is a single dose/day of Forodesine Hydrochloride. There has been some good success with drug, especially for Sezary Cell Syndrome patients. Here is the description BTWw, the coordinator said I tell you about this, but of course there will be things I won't be able to share since this is a drug study.) anyway, Forodesine hydrochloride is designed to block an enzyme in T-cells, causing them to die. T-cells being the malignant cell in CTCL is the only white blood cell that is affected. So far there have been no side affects, or so they tell me.

To prepare for this I'm off my 4 Targretin per day and no photopheresis. I have to say, I'm on day 20 and my feet that were looking so good, are getting real thick skin and very big splits! I'm hoping the new drug will kick in quick! I had forgotten all this split hands and feet stuff. Even though I was doing well on my Targretin and photopheresis, it was slow going as many of you know. My skin has gotten so dry and I'm flaking even though I still get to do my wet wraps (Triamcinolone cream all over my body, then wrapped in hot wrung out towels, then wrapped in trash bags, and blanket). I can only go about 8 hours a day w/out wanting to tear my skin off, or at least my clothes. So if you see me in my pj's out and about, the only thing that feels OK, just keep smiling. I'm not sure what the State dress code says about wearing your pjs to work!

I go to Houston for 4 days next week. Day one, I have my blood taken ~6 times: 1st draw, dose (meaning I take my pill), 1 hour later blood draw, then at 2, 4, 6, & 8 hours. Then the next 3 days, blood draw and then dose. Or maybe it's dose then blood draw ;). The coordinator wasn't sure. Builds lots of confidence ;)!

Anyway, I'll do my best to update my blog weekly, if not daily.

Ya'll pray that God will use this once a day pill to kill off all my T-Cells. I keep having visions from the movie Van Helsing, there is a part where Dracula's "children" are killed due to Van Helsing killing Dracula. Anyway, when they die, they explode into this green goo... and that's how I see my T-cells dying when the new drug enters my body!!!!

Because I'm off everything, I've got strep throat this weekend, and feel pretty miserable. I can barely walk because of the cuts on the bottom of my feet. The really sad thing? No matter what I do, they aren't healing. I'm soaking them, I'm wrapping them in Saran wrap, I'm covering them in antibiotics and steriod cream... AND the REALLY SAD THING.... I can't wear my high heels. WAAAAAA. I know you all feel for me.

The NOT SO MERRY Month of May, June, ...

2006-08-22T11:50:00.000-06:00

Well, dear friends, to put it succinctly, May was hell. It was like everything that could go wrong with my medication did. I'll explain... Or in those famous words spoken from Inigo in the Princess Bride:

Inigo: Let me explain. No, there is too much. Let me sum up.

So let's sum up!

1. Well it all began the first week in May. I thought I had found the wonder drug, of all wonder drugs. It's called Pregablin or Lycra, and it's supposed to help with itching. And it did!!! My itching was greatly decreased. However, the side effects from this wonder drug far outweigh the fact that I was itching less. The first thing I notice was the inability to see clearly. Everything was blurry... I'd drive right up on cars just to see if I could read the license plate. Since I had new glasses, I thought perhaps that I had lenses gone bad! But then, validation! You know, my friend, who lives in Marble Falls who also has MF (Beverlee)? Well she e-mailed me and told me that the Pregablin was making her eyes blurry. So that mystery was solved. The second thing to happen while taking this drug, which let's be honest was a little harder to determine, it made me very ditzy. And I know many of you are thinking "But, how could you tell Renee?" Just ask my bosses! I was having a difficult time functioning at all, however, I was too ditzy to realize it. But because of the now near blindness overtaking me, it was in the trash with the Pregablin. And soon after the fog began to lift. But, my dear friends and family, it didn't end there.

The next thing that happened during those same 3 weeks was an allergic reaction! An allergic reaction that made me itch. More! Whoopee, I hit the pay load! Dr. Duvic had given me this cream to use in loo of my nightly wraps. It was 2% hydrocortisone mixed in Eucerin, a thick white lotion, which A) Makes it a compound, B) is then not paid by Blue Cross Blue Shield & C) the only place I could get the prescription filled was at People's pharmacy. When I first went into get the prescription filled the young man in the pharmacy told me that it would be $120. I said why so much? He said, because they can only get Eurcien in 4 ounce jars. I told him, no that's not true, you can get them in 1 pound jars, and he was like really? So he looked on-line, and he found that it is true; you could buy them in a 1 pound jar. Duh. We who itch are very intimate with every lotion, cream, petroleum jelly, sizes it comes in, exactly where it sits on the shelves of over 1,000 drugstores world-wide, and the price with and without tax!! So instead of being $120, it only cost me $85 per jar. Wow, were we excited, Keith was excited that we wouldn't have to do my wraps every single night and I was excited ... Well I was going to kind of miss those wraps. I would apply this new compound all over my body at night. I used it a couple of times, but I started flaking again and my skin began feeling drier, and I told Keith I wanted to go back to using the wraps, he said that was fine. My husband being the wonderful man that he is. But one night I was working late and so I thought, I'll just use the cream tonight and I won't have to worry about doing the wraps. Well during the middle of the night I woke myself up itching so bad, I thought was going to go out of my mind. I jumped out of bed like I was lying (laying?) in a bed of red ants, and then I began moving like my friend Kurt Hansen did when he was 3 years old and got in an ant bed! And after my shower that morning, it still didn't stop. I just continued scratching and itching crazily all day long. I could barely stand or sit still. And of course this was a day when I had decided to do training till midnight. And other unfortunate events transpired at work because I was so OUT OF MY MIND! We won't go into that, just suffice to say, I'm glad I still have my job and my mind. When, I got home about one o'clock that night (morning) I woke Keith up and said you have to help me do my wraps and he, of course, groggy and disoriented from being woken up by a crazy woman at 1:30 a.m. joyfully helped me do my wraps. And then I did feel much better (sung to James Brown's "I Feel Good!".) So I decided that I was last time I'd ever use that $85.00 concoction! When I mentioned this to Duvic at my last appointment, Dr. Ransdell piped up and said in only tone that Dr. Ransdell can have (confident, a little smug, all-knowing!) Oh Eucerin has lanolin in it! You've developed an allergic reaction. Ding, Ding, Ding... I just won the jackpot. So no lanolin for me.

But wait there is more! I got sunburned, bad... really bad. But, being half-Italian and only having been sunburned once in my life, it took me several days to figure out what was wrong with me. Light-headed, nauseous, peeling black skin (that one kind of gave it away!). I finally figured out that after my photopheresis treatment I'm already sun-sensitive, then I take a drug called sorlean to make me really sun-sensitive, then I crawl in an enclosed cylinder that emits light close to sun strength! So I learned that I can't have my light treatment the same week as I have my photopheresis treatment. And because I got sunburned and was peeling, I got another MRSA infection. I need to remember that when my feet and hands get so swollen that I can put on my shoes or my wedding ring, and my hair flakes more than normal, then this is a good indication that I am having a MRSA flare-up.

Fortunately, I was going to see my doctor that week. She gave me a drug called Levaquin. And yes, friends, this is a wonder drug. I had Keith fill the prescription that very evening. I took one pill at nine o'clock that night and at 8:30 the next morning I could put on my wedding ring with no problem. And then I noticed that the flaking in my hair had greatly reduced. In fact, one day I'd worn black to work when my hair was flaking so bad it was driving me insane. So I used my lunch hour to go and buy a new outfit. So basically, you can say that the first 3 1/2 weeks of May were a total wash for me. Between allergic reactions, being sunburned, and MRSA infections I wasn't much good for anything.

August 14: I got an e-mail from my friend Beverlee who has MF today and here is what her Dr. said about Levaquin: ...but when I asked about levoquin, he said it was a very powerful, fast acting type used short term. Body can build up an immunity to it, and would not be effective when you need. And, when you need it - you need.

Fortunately things seem to be starting out a little bit better. But the itching seems to be worse. So yesterday (June 27th), as I was standing in the shower just crying and saying, "Why am I still itching all the time. Even waking up in the middle of the night, scratching... I all of sudden picked up the new body wash that I was using. One of the last ingredients was lanolin. Could it be? So as of today, June 28, I've quit using that body wash, but of course, I was having to squeeze hard because I was at the end of the bottle! Figures doesn't it! Today (June 28th), I still seem pretty itchy and dry. So I don't know if it is the light treatment, the body wash or if I'm getting worse, but I have to confess that when I have been itching all day, I'm exhausted by the time I get home and can only think of "I'm ready to go to bed now." Which of course never happens for several hours, because you have to do the wraps. You have to prep your feet... new regiment: slather with Vaseline, wrap in saran wrap, but a sock on it, and go to sleep. I still have cuts on my feet, but at least this procedure ensures two things 1) I don't wake in the middle of the night in pain and 2) the cuts close up faster!

When I was leaving Duvic's office during my June appointment, I mean just as I was walking out the door, she said "I want you to talk to the bone marrow transplant people again about getting the kids tested." This test involves having blood drawn from my 3 children to see if they are a match. The test costs about $150.00/child. If one of them looks like a preliminary match, then MDA will do a more in-depth test which costs $12,500. So I guess we're back on the bone marrow transplant again. Days like this when I'm itching all over, and can't be still and can't concentrate, I wonder wouldn't it be worth it? I just don't know. I ask you that you would join with me in seeking God's thoughts on me having a BMT. Is it the right thing for me to do or not. It's very scary to think about having a transplant, you're semi-isolated for weeks; a hundred days at most, and then you never know when something might flare-up like the nasty
host vs. Graft-disease. At least with the way things are now I know what to expect when I wake up in the morning... That I'm going to be itchy and uncomfortable and WHINEY, but at least its a known commodity, which somehow is more comforting than the unknown. (Shock factor: Renee doesn't want change in her life??... I guess this is the first time ever I've not craved change.)

Update: August 14th: How am I? Let's see...

1. I had another bad reaction to the light treatment. And my derm had it set on the 2nd to lowest setting. That was 2 weeks tomorrow. So I had to go through another 10 days of being miserable.

2. Did I mention that Targretin the "chemotherapy in a pill" makes you depressed? Lately every time I got to see Duvic, the residents ask me if I'd like to see a psychiatrist and I tell them I have 38 I can talk too. But I've been really blue and down, especially for me. And then on July 9th it broke. And that is what I told people, "I'm doing so much better ... Something just broke on Sunday." 2 weeks later a friend at church came up to me and said, "Renee, I wanted to call you and see how you did after we prayed for you." Prayed for me? When did she pray for me? I racked my brain, I stood there with a dumb look on my face. She said, "You know 2 Sundays ago... July 9th!" See even when we don't even know or are aware, God is GOOD. He is GOOD ALL THE TIME!

On Monday, August 20th, I was just so down. I couldn't stop crying. Part of the reason was I was itching horribly. Keith said he was going to post a prayer request to the church. Well I never got the notice which I do via e-mail. However, I began to feel much better and my crying ceased. I asked when I got home if he got people to pray for me and he said he had sent out the e-mail. God is so good. Even when I didn't know anyone was praying, I still received His grace and mercy

Ok back to my list:

3. A guy in Houston thought I was Keith's mother. Now talk about depressing. Seriously, it was so ludicrous it was funny. I mean have you seen Keith’s graying temples? Sorry, honey, just kidding!!

4. I met another BMT patient of Dr. Duvic. She is having problems too. Not all the time but enough. I asked her if she'd do it all over again... In her eyes she was saying NO!

5. I went to a seminar on BMT. The Dr. presenting was talking about how hard it is to match siblings. He said just because they are your siblings doesn't mean that they will be a match. EXCUSE ME??? I'm waving my hand and say, "but Dr. My Dr. wants me to have my children tested for me?" He says, now this funny... "Well, if you and your husband are very similar, then perhaps they might be a match, but it's is very slim chance." yea, let's see Keith is day and I'm night!!! So no I just can't bring myself to have a BMT right now.

6. I met another lady in Austin who has MF. She's wonderful, encouraging, funny, and a doll, too boot! We both can't wait to get together again soon.

7. Now besides my buddy, Beverlee, I have Kathleen and Angelique. We met for dinner last night, 8/20 and I have to say they are just wonderful people and even though we all are having different symptoms and do different things we still share much in common. Like people saying "You look so good" Ok, that is nice, but then they add cheerfully, "So you must not be sick (have cancer) anymore?"

Sam, my 12 year old, was looking at a picture of me. And he said, "Mom, look you were white there." And said, "Yes, that was before I got sick." And said, "When did you get sick?" Of course this gave his sister the perfect excuse to hit up the side of his head and say, "Dummy, Mom has cancer (you have to drag out the word cancer... can cer... only a 13 year old can do it perfectly).

Ok, we are almost up to date. So I've stopped the light treatments, I might have to go back to using the Nitrogen Mustard (NM) which is now $2,000 per jar and my insurance swears they will not pay for it. But we'll see... I've got a lawyer, some verbiage and a lot of tenacity up my sleeve!

I've been itching a lot. Which as you know makes me exhausted my skin is suddenly looking better. I have lymphocytes in my skin. And somehow we've got to kill those, too, to get me healed, in remission ... Whatever. That's why either the light treatment or the NM does this. But the last couple of days my skin is getting clear places!!! But I'm itching worse. It might be, the itching part, that fact that it is 104 degrees outside and it's so dry. I hope so. As to the clearing, I've been praying lately that I would have Jesus would replace my skin with His.

Ok dear friends and family, I'm going to end with this. A friend at work asked me what a blog was and did she need one. I tried to explain it can be anything you want. You can just talk about whatever... share your thoughts, happenings in life, etc. So here is my compilation over the last couple of months of things I thought were hilarious.

1. I was taking a Turkish cooking class. The Turkish women were talking about learning how to learn English. One sweet girl said I watch TV. I watch Everybody Love Raymond. Then she said, "But there is one phrase the grandfather always uses. And I've looked it up in the dictionary and can't' t find ... (I knew what was coming it is "Holy Crap." After all us American girls quit laughing and wiping the tears from our eyes, we told her not to use that expression!

2. I was in Starbucks the other day and a woman ordered a Tall, decaf, no fat latte with 4 equals. uuuuhhhhhh just think of drinking that!

3. Keith was going east on Parmer and the traffic was really bad. You can take a right on Lamar. People were moving to the far right lane to do just, however, there was that solid line... and as people would cross the solid line, a policeman in an empty lot was just pulling them over by the dozen! So don't cross the solid line.

4. Did you know on Ham Hotpockets, the ingredients say: Ham water pressed and shaped. Does that really mean there is no ham? Just pressed ham water? Gross!

Ok, to sum up:

1. God is good... He's good all the time. So even I've been battling some depression and more itching, I hang on to the promise of Him. Twice when I've been really down, He has stepped in and buoyed my spirit amazingly!

2. I've got some decisions to make. There is a drug study they are doing at MD Anderson and I'm going to talk to Dr. Duvic about it. I need to decide if NM will be the right move.

3. My nails are growing back. They look gross but it marks improvement.

4. My Sezary count was 768 which is below the 1000 needed to diagnose SS (Sezary Syndrome) at this time and represents improvement. And, btw, you need 0 cells to be totally cured of SS!

5. I have met 2 new wonderful ladies with MF. It is so good for us to have a support group. Thank you Kathleen, Beverlee, and Angelique. You make life that much more bearable. What a blessing you all are to me!

And of course all you wonderful friends and family, that read my blog, pray for me and hold me up. I couldn't do this without you.

Thanks for reading and listening to me babble. - Renee

Overly Wired?

2006-05-08T16:32:00.000-06:00

Life's Work: Overly Wired? There's a Word for It
By LISA BELKIN

WAS there gridlock before there were automobiles? Was there jet lag before there were airplanes? Who was the first person to say "I Googled it" or "he's cyberstalking me"? At what moment did a "web log" turn into a "blog"?

Language makes things official. Change in the pace of life over the last decade can be measured by change in our vocabulary. We I.M., we get phished, we have PIN's. We HotSync, therefore we are.

Does a phenomenon fully exist until it has a name? Dr. Edward M. Hallowell thinks not, and he knows more than a little about naming a trend into existence. He was the first to name adult attention deficit disorder, or Adult A.D.D., back in 1995, and now he is taking on the rest of modern life in "CrazyBusy: Overstretched, Overbooked and About to Snap! Strategies for Coping in a World Gone A.D.D." (Ballantine Books, 2006). The frenzy of our wired world, he argues, is giving nearly all of us the symptoms of attention deficit disorder. To conquer the enemy, he says, we first need to name it.
So he has come up with the following suggestions, among others:

Screensucking, which he defines as "wasting time engaging with any screen - for instance, computer, video game, television, BlackBerry." He goes on to use his new word in a sentence: "I was supposed to write that article, but instead I spent the whole afternoon screensucking." That concept hits particularly close to home.

EMV or E-Mail Voice. This, Dr. Hallowell writes, is "the unearthly tone a person's voice takes on when he is reading e-mail while talking to you on the telephone." Researchers at M.I.T., he tells us, have developed a program that can electronically measure how engaged people are in a conversation, giving scientific certainty to your suspicion that you are not being listened to.

Bluetooth fairy: a person who walks around with the blinking glow of a Bluetooth headset permanently in one ear.

Frazzing. Defined as "multitasking ineffectively." The term multitasking itself was originally coined to describe what a computer does during the microseconds between keystrokes. Then it came to mean something humans are proud to do. And when we crash (also a computer term) while trying to multitask, we frazz.

Gemmelsmerch. "The force that distracts the mind or steals it away from what it wants to do or ought to be doing." For example, "Accidents along the highway are high in gemmelsmerch, compelling drivers to slow down and gawk. A jackhammer outside your window is high in gemmelsmerch. Getting news that you will be audited by the I.R.S. is high in gemmelsmerch. ... As if covered in a radioactive cloud of the stuff, the world has never been as high in gemmelsmerch as it is today."
These are all good words.

But Dr. Hallowell's list is far from complete. A world transforming itself at an almost cancerous pace requires an exponentially new vocabulary. Coined with the help of some friends -particularly my husband, Bruce Gelb, word maven extraordinaire, and Al Cattabiani, founder of Garagista Records and the best punster I know - here are a few of my own additions:

Spammified: to end up in your spam folder by mistake. This is becoming the new "check is in the mail" excuse for why we don't answer e-mail messages. "I am so sorry, but I only just got your message. It had been spammified."

Cellopain: the jerk who talks loudly and obliviously on his cell phone in a crowd. There are other words for this person, but they are not printable.

Regurgimailer: people who forward to everyone they know everything that lands in their in-boxes. Warnings about techniques that rapists use in parking lots; photos of adorable missing children; heart-warming lists of why women and their friendships are so wonderful; jokes about, well, everything. The fact that most of the items either have been traveling the Internet for years or turn out not to be true, or both, does not stop them. A word to regurgimailers - check Snopes.com before you forward, please.

Reverberon: the kind of e-mail described above, which has been forwarded endlessly and everywhere.

Telamnesia: a condition that restricts you to talking only to people who are on your speed-dial list because you no longer keep phone numbers in your head. For me, this includes my own home, which I misdialed the other day.

Logonorrhea: a related condition that renders you unable to use certain online accounts because you can remember neither your screen name nor your password.

Comments? - Renee

All right an Update at last...

2006-04-19T18:02:00.000-06:00

Finally, I am updating my blog. I have been waiting to update my blog, because we got voice recognition software called Dragon Speaking. I am going to be training some of our doctors on the use of this software. So what better way to start learning it then use it to update my blog.

So where did we leave off? Oh yes, the bone marrow transplant... I have to admit, I'm still percolating on that. I actually met the woman who had the first transplant using Dr. Duvic protocol, which is eight weeks of body radiation and two weeks of chemotherapy. This woman has been doing really well. She recently got a case of graft versus host disease. Thus she has had to return to MDAnderson and is doing photopheresis again, for her GV H. D. she told me that she did not regret at all having had the BMT. I also received e-mails from two people on my news group that had had transplants. They both are very happy that they had the BMT. Keith and I still want to wait until next year, before making a decision. The real problem with this cancer, is that it can come back at any time, unless of course the Lord does a complete healing. I'm still trusting him to do this.

I have been doing really well and making great progress. About three weeks ago, Dr. Duvic took me off nitrogen mustard. This was just in the nick of time, because a company called Ovation had just bought the rights to nitrogen mustard. Apparently they buy medications that are used by very small percentage of the population. If I remember correctly, the New York Times article said that only about 5000 people use nitrogen mustard in the United States. As you may remember my insurance refused to pay for it. In fact I was on the phone with both Medco and ERS which is the conglomerate's in charge of state employees. We were doing a conference call. I had Medco on one line and had ERS on the other line at the same time. Anyway they had been giving me the runaround, saying that Medco should be paying for my nitrogen mustard and Medco was saying that ERS would not pay for it. It came down to the fact that ERS would not pay for the nitrogen mustard. I asked if I could have my doctor write a letter and I was told he wouldn't do any good. Don't you just love state government? I then asked if I could write a letter to my congressmen and the woman replied, will of course this is Texas. And then she corrected herself and said, I mean the United States. But good news when I went to see Duvic. She took one look at me after my second day of photopheresis and said let's start you on light treatment. When the resident came back in. I asked him about nitrogen mustard. And if I could get Dr. Duvic to do something to help pay for the cost of the nitrogen mustard. The resident looked at me with a shocked look and say you can't take nitrogen mustard, and the light treatment at the same time, he said this would definitely give me melanoma. Keith and I looked at each other and all that's a good thing to know. And then we left. After I got back from Houston. I made an appointment with my dermatologist to talk to him about starting up my light treatment again. He said, I probably needed to wait a week or two before I would start the treatments to let the nitrogen mustard get out of my system. That really surprised me, because we hadn't been told that either. So I decided to call Duvic, just to make sure how long I needed to wait. I finally got an answer, and it was to wait two weeks. As of today, April 19, I have had nine sessions. I am seeing an incredible improvements in my skin. When I went to see Duvic a couple weeks ago. She made some comment under her breath of that taking me off the nitrogen mustard, because it was irritating my skin. I told her it hadn't been irritating me, but what counted to better I was looking now that I was doing the light treatment. I really feel like God was using her even though she didn't know it. Not only is my skin looking a thousand times better a think of all the money I'm saving by not having to use the nitrogen mustard.

I wouldn't do it!

2006-03-24T09:41:00.000-06:00

This was Dr. Duvic's comment when asked by her spunky resident Dr. Joy K., well Dr. Duvic would you have a BMT? I think that seals the deal for me! More later if you are reading this.

There are 6 more of me!

2006-02-05T21:22:00.000-06:00

Can you believe it? Six more in this world like me? The premilnary search for my bone marrow type produced 6 other people.

However, as Keith and talked with the PA (physician assistant) in the photopheresis unit, Beverly (the aforementioned PA) voiced great concern about me having a BMT. Now granted they do see the worse cases otherwise if the receiptent was doing well... well, they'd be well. Got that? The problem is that there is just not enough data at all to make a really informed decision. But, I've got God on my side and I know I can trust Him. I'm trusting that if and when a decision is to be made, He'll give me and Keith and many others: words, advice, encouragement and checks (as in checks in the spirit)!

Meanwhile, at my appointment with Dr. Duvic, Keith and I began feeling like we were back in Biblical times. You see, Dr. Duvic began speaking in parables. We felt like when Jesus says you have ears, but you do not hear. Here is how the conversation went. When Dr. Duvic mentioned that I had my HLA typing (that thing that they do so they know your bone marrow type), I said, yes, I'm really thinking that I don't want to do the BMT. Her reply? "You're in denial." Ok, what does that mean. Then she says, "well you are getting so much better, which is a good time to think about getting a BMT." Then a few minutes later she says, "Well if you don't have to get one then that would be best!" Of course, it was now 6:30 pm, yes another late appointment, and I was too tired to try and figure out what she was saying. So I'm sticking by my last paragraph.

Will that be Mustard or Mayo with that BMT

2006-01-23T21:43:00.000-06:00

Met with Dr. Duvic and the Bone Marrow Team on the 10th and 11th of January. It was not very enlightening! First, Keith and I left Austin at 7am for our 11:00 am meeting with Dr. Shpall (pronounced like the shu in shudder). We get to MDA and they tell us Dr. Shpall won't be in until 1:00 pm. But wait, there are lots of other people we can talk to... So don't go to Photopheresis yet. Ok, we say. And we wait, and wait, and wait. Now they tell us, well go to lunch and come back. We do. We finally get to see Dr. Shpall. It wasn't very informative. She has just started working with Dr. Duvic on BMTs and thus with patients with MF. So she really can't tell us much. [See Keith and Renee's blank faces as they ponder why they are having this meeting.] Then we met with somebody else, I can't even remember now, and finally I got to go to Photopheresis at 4:30 p.m. I send Keith back to the hotel for much needed rest while my white blood cells suntan. At about 7:30 pm I'm finally tanned and taped and ready to go. Wish could say rested, but this trip was not restful at all. The next day brings much of the same. Waiting to talk more people in the BMT department.

Here are a few exciting things I learned:

It costs $2500 to have your blood drawn and your HLA typing done (that's what they need to determine a match)
They take 40 ccs of blood for the HLA
It costs $12,000 to do a search to find a match
I'm looking for a MUD... a matched unrelated donor... it's because I'm adopted and unless my children are a match they will have to search the world-wide databases which have a membership of over 10 million [We've not told them yet they have to give 40cc's of blood for mom, but what the hey don't we give blood for our kids everyday?]
And the cost of the BMT is $500,000.

Fortunately, insurance pays for most of this.

Here is more on what Duvic had to say about the BMT: We won't consider doing one until I'm almost in remission. She had done 11 BMT on patients with MF and one has died. I thought she said 4 had died, but Keith corrected me.

Here are my top 10 reasons for NOT having a BMT:

8 weeks of Skin Radiation
2 weeks of Chemo (still never got an answer if that was every day, or what)
The possibility of having to shower 3x a day [I don't even like showering once a day... because it's borrrring]
Swishing stuff every 2 hours to keep mouth sores at bay [I'm impressed if I brush my teeth once on the weekends... I know too much info]
Using a collection hat [if you don't know what that is, you probably don't want to]
Keeping a record fluid intake... i hate having to keep records on myself!
Have my blood taken every day between 4am and 7am... just don't wake me
Not eating fresh fruits or vegetables
Learning to flush my central venous catheter (CVC)
Having a CVC

Two good reasons to have a BMT

Cured for life as long as everything goes well
Getting to order my meals every day that I'm in the hospital ... yep that's under the heading: inpatient, self-care activities.

The above is taken from the Blood and Marrow Transplantation Patient Education Manual.

But you know what??? I'm praying, and hope you will too, that God will heal me without the BMT. That HIS bone marrow would infiltrate my body!

Oh one more thing on the good news side: My CD4 cells are down to 794. This is good! Also, I've got a lot more energy and if I just wasn't itching (not as bad, but still an irritant) and if my fingers would quit splitting... why I'd be just peachy keen!

Keep praying and thank you all for standing with me, loving me, praying for me! ~ Renee

Dr. Duvic's Notes from 12/7 and the B Word

2006-01-08T19:38:00.000-06:00

So I get this note from Dr. Duvic and she says in it that I'm in partial remission. Wow! That was the first time I had heard that! And my CD4 cells have dropped from 4,489 (11/1) to 1,979 (11/16). This is good. You don't want CD4 cells. They are bad cells. So things are looking up, right?

Well, I go to my December 27th appointment and after waiting 4 hours for my 11:30 a.m. appointment, Dr. Duvic rushes in and begins examining me. While she is looking me over, she suddenly says, "Have I asked you about your brothers and sisters?" I think hmmm, why is she asking me that? "No," I say, "and besides, I'm adopted." Then she asks if she's talked to me about a bone marrow transplant. ...You know those commercials where they are showing a scene or something and suddenly you hear a screech and the scene freezes... yea, well, that's what it was like for me.

So, what does this mean? I'm not sure. The Polaroid snapshot is something like this:

8 weeks of Skin radiation. Side affect? Makes the skin dry. Solution: have it done in Houston during the summer when there is lots of humidity. (BTW, when I asked Dr. Duvic if I couldn't have it done in Austin, she looks up at me w/this droll look on her face and says, "I wouldn't. It's very complicated procedure."

2 weeks of chemotherapy. Yep the throwing up, infection causing kind. Upside? Maybe lose some more weight? (I'm just trying to look on the bright side)

Then finally about 100 days of isolation. The downside? This is when infection is most likely. The upside? Think how many books I'll be able read and movies watched.

Seriously, I'm not taking this lightly at all. But I am weighing a year's worth of treatment vs. who knows how many years.

I met a woman in the waiting room that's been coming for treatment since 1998. It's a lot to think and pray about, and I invite you to pray with me seeking the Lord to give me and my family wisdom if this will be the right thing for me to do. Of course if God just wants to heal me right now, that's fine, too! ;). But the BMT might be His avenue of healing. It's in His hands, I continue to proclaim He is a GOOD God. So I trust whatever happens He's done what's best overall.

So this week I'm meeting a Dr. on the BMT team and the BMT team (and here's some good news, it turns out that the BMT team at MD Anderson and Dr. Duvic have done more transplants world-wide than any other drs.)

I'll try and not wait so long to report back what I learn this week!

The Horrors of Pizza/Questions Answered

2006-01-07T19:48:00.000-06:00

Update from my December 5th and 6th appointments.

But first the Horrors of Pizza. On Tuesday, after my blood draw, my bed for my photopheresis session wasn't quite ready, so my mom and I went downstairs to grab a bite to eat. The pizza looked so good... a 4" x 3" square with lots of meat on it. I got onlyone piece! We ate and then headed back up to the 8th floor. About 45 minutes later they hooked me up to the machine and began drawing blood. Well, when it got time for the red blood cells to be separated from the white blood cells (called buffy coat) all the alarms on my machine started going off. Hmmm... Well we weren't' sure what was causing it and they reset the machine. Ok, got thru cycle 1. Here comes cycle 2, I see buffy coat displayed on the monitor and again with the alarms already! Veronica, the PA on duty that day, walks over, pulls up my bag of white blood cells that is almost full of what looks like very watered down milk. She says to me, "What have you been eating?" I sheepishly reply, "One piece of pizza." To which she says, "Ohh, too much fat!" My normal 6 cycles that day ended up being only 3!! (to see the bag under normal circumstances click on January Archives and see a picture ...and NO I won't be a guinea pig for you and try out different foods to see which ones have exessive fat!)

Uh, I've not eaten any pizza since, then... well ok two very small pieces on January 30th! But talk about grossing me out... fat has suddenly taken on new proportions!

Questions Answered

Question: Will my color every go back to my normal color?

Answer: Probably not.

Conclusion: Ok, I have a perpetual tan.

Question: I have these little black dots, see like here on my calf. What is that?

Answer: Oh that's where you've damaged the cellular level of your skin from scratching.

Question: Will they ever go away?

Answer: Probably not.

Conclusion: So that's why they call this a disfiguring disease

A Prayer

2005-12-05T09:52:00.000-06:00

My husband wrote this and I found it to be encouraging and insightful. I hope it speaks to your heart. ~ Renee

Lord, today I embrace the cross of relationships
Relationships imperfect
Relationships that hide wounds
Relationships that I am a part of and reflect

I choose to love people as they are and not as they appear in my utopian dreams

Give me the mind of Christ
That I might empty myself,
Incarnating something of you in this little space of relationships and time that I occupy

~ Keith Atkinson

WOW WOW WOW...

2005-11-23T17:18:00.000-06:00

"WOW! WOW, I don't believe this. I thought you'd be a much harder case. You're turning out to be easy." These were the words of Dr. Duvic as she looked me over November 16th. I now only have 13% coverage. There was 13% patch (don't ask me what that means) and 0% plaque and tumors.

As Dr. Duvic continued to examine me and she kept saying WOW, I told her how we had started taking Communion before each treatment beginning in October. Dr. Duvic replied that she certainly believed in that and said she had a patient w/MF who was a Priest and is now in remission. She said she gives him a list of patients to pray for whenever she sees him. Keith, my husband, said to make sure we were on his list! I can't really contribute anything else to my sudden improvement. Just today I was reading on the MF newsgroup someone who has been getting the exact same treatment as me and after several years they are still in the same shape as they were when they started!

I will go to MD Anderson the first and last week of December and then I will go once a month. I have no idea how long that schedule will last. Another poster on our newsgroup said she has been doing Photophresis since 1999. Another stated that when they stop any of the treatments the plaque and tumors start coming back in a couple weeks of doing nothing. This why I'm believing God for my TOTAL and COMPLETE HEALING!

Another interesting thing (me... always the enigma...) my CD 4 cells have risen from 2163 to 4849 since 10/5. They should be in the 205-1451 range. I asked the resident about this and she said if she had just seen my blood tests she'd say I was still very sick, but looking at me she can't abide by that assessment. I wanted to ask more and press them on this, however again we didn't see the good Dr. until 3 hours after our scheduled appt. and frankly, I was ready to get out of there and get on the road back to Austin.

Aren't we all feeling this cold dry weather! It is really dry here and my skin is suffering, but it's only in 4 places... my face, my hands, my upper arms and my thighs! So back to buying lotion every time I go to the store! At least I'm not FREEZING! And thank heavens we live in Austin where hot humid days aren't far off. I'm praying and trusting the Lord for my complete healing before January or February, the only months that anyone can really say get cold in Austin!

Bless all you as you stand with me! Happy Thanksgiving and Merry Christmas to all!

Below is a picture of where I get my blood drawn each time I go to Houston and the sweet lady who draws my blood.

This is the lady who does my "quick draw". I have 8 vials of blood drawn on day one each time I go to MD Anderson. On the 2nd day of photopheresis, I was going to quick draw just to get a vial for my CBC. Fortunately one of the nurses said "You don't need to get your blood drawn the 2nd day, we can do it here." Now they tell me... how many months have I been going day 2 get my blood drawn? More times than I want to think about!

Update: Appts. Oct. 18-19 & Nov. 1&2

2005-11-09T17:35:00.000-06:00

If you will remember, at my last update, I reported that Duvic wanted to see me every other week. And just after I remarked to Keith... "I'm not having fun anymore." However since she took me off the Interferon, we thought, we'll maybe going this often will counterbalance the absence of the Interferon. Well something significant is happening. Remember when I reported last time (Oct. 4 and 5) that the very day of my appt. I suddenly got these bumps all over my skin. And Duvic replied, "This is good... all the MF is leaving your blood and coming to your skin."

The notes from that appointment read: "She does have severe disease; however her skin score has gone from 100% to 64% -(10/5). Week after that the report read: Total body surface is 44% (10/19).

A 20% difference in 2 weeks!!! Ok, granted since I lost my 40 lbs there is less body surface than when I started so that might account for that low number (ha-ha). Seriously though I want to share with you what I'm convinced has been making the difference!

The Sunday before our October 4th appt. I felt the Lord speak to my heart and say that Keith and I were take Communion each time before I did my photophersis. Keith agreed and I went to Central Market and got some Matza bread and kosher grape juice. No reason, just because it was all on the same shelf!!

John writes this in his gospel: I am the Bread--living Bread!-who came down out of heaven. Anyone who eats this Bread will live--and forever! The Bread that I present to the world so that it can eat and live is myself, this flesh-and-blood self."John 6:51

God tells us that Jesus' body was broken for us, and by His stripes we are healed. In Isaiah the writer talks about Jesus' sacrifice for us and says it this way: The plan was that he give himself as an offering for sin so that he'd see life come from it--life, life, and more life. - Is. 53:10

When we drink the cup of blessing, aren't we taking into ourselves the blood, the very life, of Christ? And isn't it the same with the loaf of bread we break and eat? Don't we take into ourselves the body, the very life, of Christ? - 1 Corinthians 10:16

All quotes from:
The Message (MSG) Copyright Â© 1993, 1994, 1995, 1996, 2000, 2001, 2002 by Eugene H. Peterson

This last week, Oct. 24 & 25 after waiting 3 hours (hey it was an hour less than last time) she swooped in, picked up my arm and said "I see hair growing on your arm!" Then she gushed, "This is good, you've had a boost in your immune system. I'm very pleased!" And she was gone!

Hair on my arm is something to rejoice about? Ok, if she says so, but as I was pondering this, my heart dropped to my stomach... and I discreetly lifted my arm to view my armpit and dang it wouldn't you know it... HAIR! I've not had to shave my pits for months! Oh well I'll take thehasslel of shaving under my arms if that means I'm getting better!!! Especially since I have my groovy new razor from Schick Intuition Razor! Try it ladies, it's groovy.

Y'all knew I couldn't be serious for too long, but seriously, it is amazing to see God working so perfectly as He is perfect in my healing. Did you notice that all the verses above says LIFE, LIFE, LIFE? He has come to give us life and give it abundantly.

May you experience the love Christ has for you!

Thank all of you for standing with me in my healing.

P.S. If you want to make a comment just click on Other and put some name, any name, preferably your name so I'll know its from you ;), in the box.

..."it's one of the most disfiguring diseases in man." a quote from my Dr. during a Lymphoma Research Foundation Panel Discussion

2005-11-08T10:24:00.000-06:00

Subject: Lymphoma Research Foundation Panel Discussion
Cutaneous T-Cell Lymphoma
Join our panel of leading Cutaneous T-Cell Lymphoma treaters for a discussion on the latest in diagnosis, management, and treatment of this condition.

PARTICIPANTS
Madeleine Duvic, MD
University of Texas Medical Center
Lauren Pinter-Brown, MD
University of California at Los Angeles
Arturo Molina, MD, MS, FACP
City of Hope National Medical Center

MARIO MACHADO: Hello. I'm Mario Machado and welcome to the tonight's special program on cutaneous T-cell lymphoma. This program is part of an ongoing educational effort of the Lymphoma Research Foundation. For the next few minutes we'll be defining what cutaneous T-cell lymphoma or CTCL really is, what causes it, who gets it and how it is different from other lymphomas. First, let's meet our special guests.

Joining us are three experts, Dr. Madeleine Duvic who is the Chief of Dermatology and Director of the Cutaneous T-Cell Lymphoma Clinic at the MD Anderson Cancer Center in Houston, Texas. Nice to have you here.

Immediately to her left, Dr. Lauren Pinter-Brown, Associate Professor of Clinical Medicine in the Department of Internal Medicine at the UCLA Medical Center in Westwood, California. Dr. Arturo Molina is staff physician in hematology, medical oncology and therapeutic research at the City of Hope National Medical Center in Duarte, California. I want to thank all of you for being with us this evening.

I know very little about the subject at hand. But let's talk about what cutaneous T-cell lymphoma is. Could you define it for us in simplistic terms?

MADELEINE DUVIC, MD: It's not one thing. There are lots of different kinds of lymphomas that start in the skin that we all lump together under the word cutaneous which means skin, T-cell which is a lymphocyte and lymphoma is a growth of lymphocytes.

MARIO MACHADO: Anytime you want to jump in and add to the definition, please.

LAUREN PINTER-BROWN, MD: I think it's a very broad term because it encompasses some conditions that really solely reside on the skin and may be treated with skin-directed type treatments and some other conditions that might manifest on the skin, but are really throughout the body and need to be treated with more systemic kinds of treatment, like chemotherapy.

MARIO MACHADO: Dr. Molina?

ARTURO MOLINA, MD: Another consideration is that no patient is alike. Patients will have many different manifestations yet we call it the same. The prognosis is quite different for different subgroups of patients. Even though we call it CTCL, we could be talking about a variety of different conditions.

MARIO MACHADO: You've defined what cutaneous is. T-cell?

MADELEINE DUVIC, MD: A T-cell is a white blood cell that helps B-cells make antibody, kills other cells and suppresses immune reactions. There are several different kinds of T-cells but they're all white blood cells.

MARIO MACHADO: The term lymphoma generally speaking means what?

LAUREN PINTER-BROWN, MD: It means a growth of one cell that becomes a huge population identical to itself and it's a cancer of these lymphocytes which are part of our immune system and one of our white blood cells.

MARIO MACHADO: This is a specialty that you have selected as your life profession. You were talking about research. I overheard you. There needs to be money and more attention paid to research. Are there a lot of people affected and afflicted with CTCL?

MADELEINE DUVIC, MD: Actually CTCL is a rather rare type of lymphoma. There are about a thousand new cases in the United States, but it belongs to a group of lymphomas called the non-Hodgkin's lymphomas. It's the fastest growing tumor or cancer in America. It's up there with melanoma.

MARIO MACHADO: It's common but it's not great in numbers. Is that what you're saying?

LAUREN PINTER-BROWN, MD: I think lymphomas in general are increasing throughout the United States and have been for many, many years. This particular lymphoma is not a very common one and it affects fewer people than some other kinds of lymphomas of other lymphocytes like B-lymphocytes.

MARIO MACHADO: How many people are diagnosed each year?

ARTURO MOLINA, MD: A thousand new cases per year.

MARIO MACHADO: At what age can it afflict you?

LAUREN PINTER-BROWN, MD: At all ages. From children to the very elderly.

MADELEINE DUVIC, MD: It's more common in older people but we're seeing it in younger people now.

MARIO MACHADO: This is a global scourge. It's not just the United States. It's a thousand per year.

MADELEINE DUVIC, MD: No, that's in the United States. That's probably a gross underestimate of the number of cases because family doctors, internists and people who are not dermatologists miss this disease all the time. It sometimes takes five years to get a correct diagnosis. That's the rule rather than the exception.

MARIO MACHADO: Why is it misdiagnosed?

ARTURO MOLINA, MD: Sometimes it doesn't look like a cancer when you do a biopsy. It can look like just a rash or dermatitis. It can be very difficult for the pathologist or the dermatologist who is looking at the biopsy of the skin to be certain that this is cutaneous T-cell lymphoma.

MARIO MACHADO: Are you the first line of defense then as the dermatologist before it goes to the oncologist?

MADELEINE DUVIC, MD: As a dermatologist, we see mycosis fungoides and T-cell lymphoma that looks like ringworm. We see it look like eczema or just a little pink spot on the skin or a white patch, or just a little scale or a little dryness. There are a lot of things that are benign that this looks like.

MARIO MACHADO: So the puzzle is --

MADELEINE DUVIC, MD: --is diagnosing it to begin with.

MARIO MACHADO: Correctly. But you can misdiagnose it.

MADELEINE DUVIC, MD: You just don't think of it when it's early in a lot of patients.

MARIO MACHADO: Before we got on set, we talked about the ugliness of the disease. You say it's an ugly disease to have.

MADELEINE DUVIC, MD: When it gets advanced, it's one of the most disfiguring diseases in man.

LAUREN PINTER-BROWN, MD: I think another thing that distinguishes it from other cancers is that it is on the skin. So whereas you might have some other cancer and you carry the knowledge of it, other people perhaps look at you and you look normal. They may not know. But this is sometimes a very difficult thing for people to camouflage. They have something that other people sitting in a room with them notice it isn't quite normal.

MARIO MACHADO: It progressively worsens?

MADELEINE DUVIC, MD: Yes.

LAUREN PINTER-BROWN, MD: It can. Yes.

MARIO MACHADO: So early diagnosis is like most diseases, it's the thing.

MADELEINE DUVIC, MD: Early diagnosis gives the opportunity to put it in remission with simple therapies. It probably improves the prognosis of the disease or how we do with it.

MARIO MACHADO: Anything about racial groups? African-Americans are more prone to have it?

MADELEINE DUVIC, MD: It's a little bit more common in males and a little bit more common in blacks. There is some data that they may do worse than white people with it. It's almost 50:50.

MARIO MACHADO: You were going to say something, Dr. Molina.

ARTURO MOLINA, MD: I was just going to add to what they were saying. I was going back to the symptoms of the disease. It's different from other lymphomas, not just because of the disfigurement that patients sometimes get. Sometimes they simply just itch a lot. Sometimes we have trouble controlling the symptoms. Even though the lymphoma is not necessarily threatening their lives, it does impact on their lives by making them feel miserable sometimes.

MARIO MACHADO: It worsens the rash if you have to scratch and agitate it.

MADELEINE DUVIC, MD: The rash can get worse when you scratch it. The itching can be unrelenting. It can keep people from sleeping and be impossible to treat.

MARIO MACHADO: Do a lot of people know that they have it? You mentioned an odor.

MADELEINE DUVIC, MD: The skin in MF can easily get infected and that can give an odor. That's right.

MARIO MACHADO: That is a characteristic of it.

MADELEINE DUVIC, MD: Because it is a disease of the immune system when it gets advanced, the immune system doesn't function normally and people are prone to infections.

ARTURO MOLINA, MD: Also because the skin is damaged. The skin is damaged by the disorder. The defenses against bacteria are impaired simply by the fact that the lymphoma is on the skin. The skin is broken down. Sometimes it ulcerates. The skin manifestations are quite striking sometimes, yet some patients have very slow growing lymphomas that do not have a lot of symptoms. Some of them have a lot of symptoms.

MARIO MACHADO: This is not a new disease that's surfaced in the last decade.

MADELEINE DUVIC, MD: It was described by Alibert, a French dermatologist in 1806. The leukemic form called Sézary syndrome was described just a little bit later. We've known about it for over 200 years.

MARIO MACHADO: How do we know how it began? How does it begin?

MADELEINE DUVIC, MD: It can begin as a little pink area on your skin or a little dry area on your skin, or scaly spot. It can begin with tumors or big nodules that come up. It can begin as redness. It can begin as white patches. There are a lot of different ways it can begin.

MARIO MACHADO: There are different varieties, is that correct?

ARTURO MOLINA, MD: Yes. Often patients are given a diagnosis of eczema, for example, or they're thought to have an allergic reaction and they get a medication called prednisone. Often they respond and it might be a while before the symptoms come back. It is not uncommon for patients to have been diagnosed with other conditions before the diagnosis of cutaneous T-cell lymphoma is established.

MARIO MACHADO: Can it start as another disease?

MADELEINE DUVIC, MD: Yes. If you define a disease as a certain group of characteristics, such as scaly red skin that itches, eczema, it can start as eczema. If you define psoriasis as thick scaly skin, it can start as psoriasis. But then as the cells grow and grow and grow and grow, there are too many lymphocytes so that it evolves into CTCL. It depends on how you use your words because diseases are just words that doctors use to put patients in groups.

MARIO MACHADO: You've been at this ten years or fifteen years.

MADELEINE DUVIC, MD: Fifteen.

MARIO MACHADO: How long have you worked on this, Dr. Pinter-Brown?

LAUREN PINTER-BROWN, MD: About thirteen.

MARIO MACHADO: Dr. Molina?

ARTURO MOLINA, MD: About the same.

MARIO MACHADO: What has come to the surface over these last ten or fifteen years in terms of knowledge, real knowledge that you can now diagnosis without error?

LAUREN PINTER-BROWN, MD: I think there are some more specific tests that a pathologist can use on the skin to help people make the diagnosis. The basic problem is getting the person who may be doing the biopsy to consider the diagnosis. If they do the biopsy in the first place and it's processed in a way that would allow you to do these special tests. Because it's such an unusual disorder and some dermatologists haven't seen as much as Dr. Duvic, they may not consider it. They say, I read about it in a textbook, but gee, I never really thought I'd see someone like this.

MARIO MACHADO: Geography, where you're born, where you live, is a factor?

MADELEINE DUVIC, MD: Not really.

MARIO MACHADO: Sun. Dry arid weather.

MADELEINE DUVIC, MD: Not really.

LAUREN PINTER-BROWN, MD: No.

MARIO MACHADO: What have you found that's common around the globe in this disease? What is the one common factor?

ARTURO MOLINA, MD: I cannot think of one because studies have specifically looked at this in large numbers of patients where very detailed history of the patients is obtained. They look at all the exposures to pesticides, herbicides, risk factors for other malignancies and nothing pans out as a convincing risk for this disorder.

MARIO MACHADO: But there are cures?

MADELEINE DUVIC, MD: There is no cure. It's my opinion that you might get MF because your immune system was stimulated by a number of different things: by a drug in one person, by an organism in someone else, by a chemical in a third person. You probably have the genetic ability to get that. The thing that sets it off is probably different in different people. Some people have a virus.

MARIO MACHADO: Hopefully we'll have a chance to talk more about it. But in any case, I'd like to thank the three of you for being with us today to share your expertise and your knowledge. Thank you for joining us as well. This is Mario Machado. We'll be right back.

[snipped]

Do I call you a researcher?

MADELEINE DUVIC, MD: Yes.

[snipped]

I'd like to start with the basic step. You trot into your doctor whether you're a regular annual visit or not. You go to your primary care physician. What initial symptoms suggest to primary care physician that lymphoma may be lurking there?

MADELEINE DUVIC, MD: Most family physicians don't do complete skin exams. They're not going to see it to begin with. When the patient shows it to them, it's going to be a little dry patch of skin or a little redness. The doctor is going to say, ³Oh, that's nothing.²

LAUREN PINTER-BROWN, MD: I think the problem with this illness is that in its early stages it doesn't look very bad. As Dr. Duvic said, it may look like a dry spot or a little allergy. Really the problem is getting people to think about this as a diagnosis.

MARIO MACHADO: Do you want to add anything to that, Dr. Molina?

ARTURO MOLINA, MD: From the standpoint of a hematologist or an oncologist, my job is a little easier because the patients have already been diagnosed. But when I take histories from patients they will give again and again a history -- oh, I've had this rash for 20 years or I've had it for five years. They called it this or they called it something else. It's almost part of the diagnosis of mycosis fungoides. It almost requires that they have other diagnoses before with conditions involving the skin.

MARIO MACHADO: What you're also telling me is that if they've had it for 20 years and it hasn't altered its look and size, it can be mistaken for anything for that matter? It doesn't grown--

MADELEINE DUVIC, MD: Different people behave differently. Some people will have a chronic rash for many years before they're diagnosed. Some people will present with lumps or bumps that are pink. That is suspicious because you shouldn't have lots of red bumps on your skin. Some people will turn completely red and itch and that's a different presentation. What we're telling you is there are lots of different ways it can show up.

MARIO MACHADO: You're saying that there needs to be education done within the medical profession as well. Not just the layperson.

MADELEINE DUVIC, MD: Absolutely. Absolutely.

LAUREN PINTER-BROWN, MD: Yes.

MARIO MACHADO: Who is doing that?

MADELEINE DUVIC, MD: Well I am.

LAUREN PINTER-BROWN, MD: You are.

MADELEINE DUVIC, MD: We all are. This is why we have our program tonight.

MARIO MACHADO: True. But we don't have the greatest assemblage of doctors perhaps. Whose ongoing task is it to educate doctors that this disease exists and what are the symptoms and what are the manifestations?

MADELEINE DUVIC, MD: They see it in medical school probably once.

MARIO MACHADO: More and more of your colleagues, your peers are learning and are aware of CTCL.

LAUREN PINTER-BROWN, MD: We hope.

MADELEINE DUVIC, MD: I would say there is still a need.

MARIO MACHADO: What are the tests that are done?

LAUREN PINTER-BROWN, MD: I think the first test is usually a skin biopsy. Many times the biopsy will be subjected to different kinds of examinations than a regular skin biopsy if the pathologist knows that that's one of the concerns. It will elucidate that the T-lymphocytes are in the skin and that they all come from a similar population of cells.

MARIO MACHADO: These tests are looking for that?

LAUREN PINTER-BROWN, MD: Yes.

MARIO MACHADO: What do you do then? After the doctor determines that it does exist?

MADELEINE DUVIC, MD: As with all cancers, patients go through a process called staging. That is to allow the oncologist or the dermatologist and the patient to know where else they have these cells, how their disease might behave, and what would be the best way that they should be treated.

ARTURO MOLINA, MD: They get a thorough physical examination. We examine for lumps and bumps in other areas that are not involved by the skin. They get a routine, thorough physical examination.

MARIO MACHADO: But there is the possibility of mistaken identity. Can you mistake symptoms? Can you mistake other conditions that can produce the same symptoms?

MADELEINE DUVIC, MD: Yes. Other diseases of the skin can look like this. Lupus can look like this. It's a fairly difficult diagnosis to make. Sometimes it's helpful to look at the blood. Some of these abnormal T-cells can get into the blood so that is sometimes helpful.

MARIO MACHADO: What do you do then? From that point on, knowing that the patient in front of you has CTCL? Don't you have to know how long he or she has had it?

MADELEINE DUVIC, MD: Sure. That's a history.

MARIO MACHADO: How do you determine that?

MADELEINE DUVIC, MD: Talking to the patient.

MARIO MACHADO: But supposing the patient overlooked it or dismissed it as something trivial.

MADELEINE DUVIC, MD: They usually know when they got it actually. It's unusual for them not to have seen something.

ARTURO MOLINA, MD: Most patients are aware and they can often tell you how long they've had the rash. That's how it starts. It's a rash.

MARIO MACHADO: Starts as a rash.

ARTURO MOLINA, MD: In most patients. Not all.

MARIO MACHADO: Small patch or --?

MADELEINE DUVIC, MD: Big patches, small patches.

MARIO MACHADO: It starts with a rash. It's itchy.

LAUREN PINTER-BROWN, MD: Usually. Not always.

MADELEINE DUVIC, MD: It doesn't have to be. Not always. It doesn't have to be symptomatic at all.

ARTURO MOLINA, MD: One of the points we're trying to make is that the presentation can vary in extremes. There can be patients with very little skin involvement and patients where the whole skin, all the skin is involved. Somewhere in between there is a range between all the different patients. I personally think that every patient is different.

MARIO MACHADO: I want to go back to that because we talked about it before we got on, be mistaken for leprosy, for example.

MADELEINE DUVIC, MD: Yes. They can actually.

MARIO MACHADO: I saw a documentary recently. It's hideous.

MADELEINE DUVIC, MD: Leprosy stimulates T-cells. That's what it does. It's bacteria and it stimulates the immune system and the T-cells come into the leprosy lesion. It's not unlike mycosis fungoides where you don't have leprosy but you still have a lot of T-cells. A lot of the inflammatory skin diseases are just T-cells in the skin. Lupus, psoriasis, eczema, they all have T-cells in the skin.

This differs from other skin diseases because the T-cells are all twins of one another. They are clones.

MARIO MACHADO: But leprosy is no longer to be feared as it was in the days of Father Damien on Molokai, the penal colony.

MADELEINE DUVIC, MD: But I have a patient who had CTCL and then had leprosy and CTCL in the same lesion and was treated for leprosy and their CTCL went away. The leprosy was inducing the T-cell lymphoma.

MARIO MACHADO: So mistaken identity is a very important aspect of this whole thing by physicians when they diagnose?

MADELEINE DUVIC, MD: Yes.

MARIO MACHADO: Your job as an oncologist is to make sure that your colleagues who are GPs and family practice doctors understand the existence of this form of the disease?

LAUREN PINTER-BROWN, MD: That's one of my jobs. Yes.

MARIO MACHADO: That's a big job. Do you go all over the country to spread the gospel, if you will, to talk about this?

MADELEINE DUVIC, MD: Yes.

MARIO MACHADO: Or is it because the number of patients is so minute, it is minute compared to some other large well-known diseases?

MADELEINE DUVIC, MD: It is one of the rare forms of lymphoma. Yes. We do travel. All of us travel.

MARIO MACHADO: That is on behalf of the Lymphoma Research Institute or on the part of the universities that you are members of the staff?

MADELEINE DUVIC, MD: University.

ARTURO MOLINA, MD: Both.

MADELEINE DUVIC, MD: Whenever asked, we go.

MARIO MACHADO: Every time you go out there, you find there is more knowledge or it's the same lack of knowledge as the last time you went out there?

LAUREN PINTER-BROWN, MD: I think there is more knowledge than there was.

ARTURO MOLINA, MD: One of the aspects to taking care of patients with these conditions is that they probably benefit more if they go to a place that has experience where they can benefit from different modalities. You would have a dermatologist but also an oncologist. Sometimes that's helpful. Sometimes you need a radiation doctor because it's part of the treatment. If you have facilities that are able to provide the whole spectrum of services that are required to take care of this patient, that is probably preferred. Some institutions have clinics that specialize in this condition and those are the areas where a lot of the expertise exists.

MARIO MACHADO: Let's talk about America. In fact, we were talking about being on the Worldwide Web tonight. We have people all over the world watching and we have some e-mail. This is from Caesar in Berkeley. What are the implications of uncommon T-cell markers of the monoclonal infiltrate such as CD43? Could this explain some unusual symptoms? I don't even know what I read.

MADELEINE DUVIC, MD: There are many markers on T-cells as there are Baskin-Robbins flavors of ice cream. There are quite a few numbers of markers. I think we are just learning what the implications of some of these markers are. I don't know if we can address CD43 particularly.

MARIO MACHADO: What is CD43?

ARTURO MOLINA, MD: It's just one of the markers that can exist in white cells. The cutaneous T-cell lymphomas almost always have CD4, for example. That is part of the requirement for diagnosis in most cases, but even that is not an absolute rule. Some of them are CD8 which is a different type of T-cell.

MADELEINE DUVIC, MD: CD3 -- Maybe it's CD4 and CD3. CD3 is on most T-cells.

MARIO MACHADO: For us lay people, CD stands for what?

MADELEINE DUVIC, MD: Common determinant.

MARIO MACHADO: Three common determinant 43.

MADELEINE DUVIC, MD: There are about 200 of them.

LAUREN PINTER-BROWN, MD: On a cell there are special markers that distinguish that cell from other cells like baseball teams, I guess. One has a green and white uniform, one has a red and green. These are the things that pathologists look at to try and really pinpoint what kind of cell is this exactly -- what colors is it wearing.

ARTURO MOLINA, MD: Under the microscope a lymphocyte will look just like a lymphocyte but we cannot tell if it's a helper lymphocyte, it's a suppressor lymphocyte. Is it a natural killer cell? There are many different subsets of lymphocytes. Sometimes when you stain the cells with antibody and then analyze that reaction, you can tell this cell stains for this marker. Then we can conclude that this cell is a T-cell, for example, or a helper T-cell.

MARIO MACHADO: Obviously with the research that you're hoping for in greater numbers of people supporting the cause, are you hoping that you can detect more about what you're setting out to do?

MADELEINE DUVIC, MD: I think we all think that these T-cells in this disease start off as relatively benign good T-cells. Then over time they change and their mutations in their genes, in their DNA make them bad T-cells. I think the goal of research should be to define those molecular DNA changes that take them from a normally stimulated T-cell to a malignant cancer T-cell.

MARIO MACHADO: People who are watching the Worldwide Web want more information, they would write or contact the Lymphoma Research -- if they wanted to make a contribution to research, is there a central fund in this country or is it done university by university? You're all from three different medical institutions.

MADELEINE DUVIC, MD: There are several lymphoma groups including Lymphoma Research Foundation of America that is sponsoring this. Some of the centers have research groups as well that accept donations to do local research.

ARTURO MOLINA, MD: I believe that the mycosis fungoides group has started a Mycosis Fungoides Research Fund.

MARIO MACHADO: You have colleagues, peers in Europe or Asia working on the same thing as you are? Are there groups?

MADELEINE DUVIC, MD: Yes.

LAUREN PINTER-BROWN, MD: Yes.

MARIO MACHADO: How do you get in touch with them in terms of keeping them abreast of what progress you've made.

MADELEINE DUVIC, MD: There is an international society for cutaneous lymphomas with scientists and doctors all over the world. We have meetings.

ARTURO MOLINA, MD: I think we're all members of that.

MARIO MACHADO: That's where you see each other.

LAUREN PINTER-BROWN, MD: One of the places.

[snipped]

We're getting a lot of e-mails. Let's take a position. We're not going to treat people over the air.

ARTURO MOLINA, MD: That's correct.

MARIO MACHADO: Is there something that you want to address from the last time we spoke an e-mail submission as to specific to general?

MADELEINE DUVIC, MD: We don't think that we are in a position to give advice when we don't know the patient's history and the diagnosis may be wrong.

MARIO MACHADO: I think there is one question that I think is rather good though. How would I find a center? Should I find a lymphoma center or large hospital, which has more experience with CTCL to check me once in a while? If I don't have access to UCLA or to your school or to Loma Linda, what can I do?

ARTURO MOLINA, MD: The patients can simply ask their doctor how much experience they've had for this condition. Sometimes it's useful for the patient to go get a second opinion at an area where there is MF or CTCL clinic, for example.

MARIO MACHADO: Let's start with treatment modalities. The treatment of CTCL varies depending on what stage the disease is in. Before we get into that, let's start with the more general question. There is currently no cure. Is that correct?

MADELEINE DUVIC, MD: That's correct.

MARIO MACHADO: So what is treatment trying to achieve?

MADELEINE DUVIC, MD: One thing is your definition of cure also has to be addressed. For most cancers, oncologists and the like use a five-year period of not having cancer as a cure. But when you have a lymphoma that may grow very, very slowly like this, being clear of your lymphoma for five years may not necessarily mean that it is cured -- meaning that it will never ever come back in your lifetime. But we would be very glad to achieve remission or clearing of the skin for prolonged periods of time, particularly so the patient can be comfortable but also so we can perhaps prevent the disease from progressing further.

MARIO MACHADO: You said slow. You've never been surprised by a rapid development of symptoms.

MADELEINE DUVIC, MD: Absolutely I have. There is a wide spectrum, as we mentioned before, and some patients may be able to look back 25 years and said, I had this when I was a kid and everybody overlooked it. Now I'm 30 and 40 and you're telling me it's a cancer. On the other hand, unfortunately, there are patients that have a very abrupt onset of their illness. They have a much rockier course. They do not have long periods of time when they have stability of their disease.

ARTURO MOLINA, MD: I just want to comment on the use of the word cure. In medicine, there are many conditions that we simply do not know how to cure like high blood pressure or diabetes. But we certainly know how to treat them and we know how to control them. In some ways in some patients with CTCL, the situation is the same. We can treat it and we can control it and some patients will still live a normal life. They just need treatment sometimes.

MARIO MACHADO: This is accelerated. The knowledge and awareness of the existence of CTCL with you out there preaching the gospel, if you will, has increased the knowledge and awareness. Has it also excited the researchers and moved the progress of research?

MADELEINE DUVIC, MD: Yes. We're learning a lot more about the T-cell because of AIDS, the virus that kills the T-cell. In the last 12 to 15 years, we've learned a tremendous amount about the immune system and how the T-cells grow, what stimulates them. Through this research in AIDS, a lot more about immunology has been known. This will effect what we know about T-cell lymphoma as well.

MARIO MACHADO: But we don't want to cast any aspersions.

MADELEINE DUVIC, MD: No aspersions. But research on basic immunology helps us understand and treat this disease better.

MARIO MACHADO: Let's take a look at some of the more respected well-established treatment tools. Who wants to take that? What is the most common tool used?

MADELEINE DUVIC, MD: We can start with skin-directed therapy for early disease. That can include light, sunshine, tanning booths, UVA, and PUVA. It can also include some topical chemotherapy.

ARTURO MOLINA, MD: Chemotherapy that patients sometimes apply on their skin can be used. Some patients, who have a small amount of lymphoma on their skin, they can just apply the chemotherapy on the lesions.

MARIO MACHADO: By themselves. They don't have to --

ARTURO MOLINA, MD: The patients learn how to do it themselves. In some patients who have more skin involvement, they can apply the chemotherapy to their whole skin. That's one of the treatments. It's called nitrogen mustard.

MARIO MACHADO: Keeping it moist is important.

MADELEINE DUVIC, MD: Moisturizers are important. Antibiotics are important at some points in the disease. Some plaques and patches respond to simple things like topical steroid creams.

MARIO MACHADO: No side effects?

MADELEINE DUVIC, MD: Every drug has side effects.

MARIO MACHADO: Every drug has side effects.

MADELEINE DUVIC, MD: Every drug has side effects.

MARIO MACHADO: But doesn't necessarily manifest itself.

ARTURO MOLINA, MD: They're usually tolerable side effects. Hopefully they're tolerable side effects.

MARIO MACHADO: After that modality, what's the next most used?

MADELEINE DUVIC, MD: After skin-directed therapy is exhausted we use systemic biological response mediators.

MARIO MACHADO: What is that mean? That's --

LAUREN PINTER-BROWN, MD: It's a big term but I think what it means is something that works via your immune system to help your immune system fight off the cancer better. It's not chemotherapy. It doesn't kill maybe the cell directly but between it and your body, working together the cell gets killed and you respond. The disease gets better.

MARIO MACHADO: Is it a serum that you inject?

LAUREN PINTER-BROWN, MD: It's a lot of different things. One example is vitamins like vitamin A can work in this disease or variants of vitamin A.

Chemicals that the drugs make like Interferon. Interferon is made when you get the flu. It makes you feel achy and feverish. We give Interferon as a treatment for this disease.

MARIO MACHADO: Does it work?

LAUREN PINTER-BROWN, MD: It does.

ARTURO MOLINA, MD: It works quite well.

MARIO MACHADO: What does it retard?

ARTURO MOLINA, MD: We don't know exactly how it works, but it does exert its effects by recruiting the immune system. So basically it triggers an immunologic reaction that has an antitumor effect.

MADELEINE DUVIC, MD: It interferes with the signals that cells need to grow so they stop growing when it's around.

MARIO MACHADO: In all the research that you do, there are no quick fixes. There is no --

LAUREN PINTER-BROWN, MD: You mean pop a pill and it's gone. No, I can't think of any, can you?

MADELEINE DUVIC, MD: It might go for a while. Sometimes.

MARIO MACHADO: It can?

LAUREN PINTER-BROWN, MD: Yes.

MARIO MACHADO: Like what?

MADELEINE DUVIC, MD: It depends on the patient. I can't generalize. It depends on the patient. There are patients who respond to topical steroids. There are patients where a little bit of sunshine clears them. Some patients need chemo and it clears them. It depends.

MARTY MOSS-COANE: Permanently or temporarily?

MADELEINE DUVIC, MD: Temporarily usually.

MARIO MACHADO: It manifests itself again at some point.

MADELEINE DUVIC, MD: It comes back. Oftentimes when a patient gets really bad, if you treat them the disease will come back in a very mild form. That happens a lot.

MARIO MACHADO: What other therapies do you use?

ARTURO MOLINA, MD: There is one that's directed at the skin that we have not talked about and that is radiation. Radiation treatments to the skin can be utilized.

MARIO MACHADO: Usually the oncologists look at chemotherapy, radiation therapy and surgery. But surgery is never needed.

MADELEINE DUVIC, MD: That's not true. If there is a single lesion, sometimes we do excise it.

MARIO MACHADO: But you go with radiation therapy second after chemotherapy first.

ARTURO MOLINA, MD: No after the --

MARIO MACHADO: You're nodding your head.

LAUREN PINTER-BROWN, MD: I think in this illness what we've been trying to describe is that chemotherapy is something that's not used as often as some other modalities. Even as oncologists we behave very differently with this illness in that we will use things that aren't chemotherapy in the sense that people think of chemotherapy as an injected kind of thing or something that makes your hair fall out, or something that makes you nauseous. Even when you put it on your skin, it doesn't go inside of you and it causes none of those effects. I think this is a situation where chemotherapy is certainly used but there are a lot of other modalities that may be used before it.

MARIO MACHADO: Blood cleansing, blood swapping.

MADELEINE DUVIC, MD: We don't use blood swapping but there is a technique called photopheresis where we actually sunburn the blood. We take the blood cells out and shine lights on them and put them back into the person. They're dead cells now and the person's immune system sees that and makes an immune response against the dead cancer cells. It's an effective treatment in some patients. [Note: this is the treatment I do every other week for 2 days.]

MARIO MACHADO: What's the determination that you use that modality?

MADELEINE DUVIC, MD: It works best we think in patients who are red and scaly.

ARTURO MOLINA, MD: Or in patients who have lymphoma cells in their blood. Sometimes it works in those.

MARIO MACHADO: From Batavia, New York, Laurie has a question for the three of you. I am a CTCL patient at Roswell Park Cancer Institute in Buffalo, NY. I will be presented at the symposium at Buffalo General Hospital as Dr. Howard Stoll's patient. I just wanted to say hello.

Do you know them?

MADELEINE DUVIC, MD: I know Roswell Park. It's a cancer center in New York.

MARIO MACHADO: They appreciate your efforts in fighting the disease. I do want to thank you. Time goes very quickly and I hope we will have a chance to talk about this again. But I want to thank you very much for joining us this evening and sharing in the program. Thank you at home for joining us as well. I'm Mario Machado. We'll be right back.

[snipped]

You mentioned as we were away for a few minutes, the importance of letting people know that there are chat-rooms where patients get together -- sufferers. Do I say sufferers or victims?

ARTURO MOLINA, MD: I'm not sure how to answer your last question. But in reference to your first question, there is a network of patients with cutaneous T-cell lymphoma who interact on the computer. I think that is particularly useful for newly diagnosed patients to know that there are other people who are going through the same thing that they are going through. The information that they have there is also quite thorough. In some ways it is a way for patients to empower themselves and learn as much as they can about their disease so that they can make decisions regarding treatment with their doctors.

MARIO MACHADO: How do you learn of other advancements that you've made in your research that you want to share with the community as a whole? How do you know of current developments in CTCL therapy? How do you get advice?

MADELEINE DUVIC, MD: We go to meetings and present our work and talk to each other. We read journals and we are participating in clinical trials for new agents.

MARIO MACHADO: For the people suffering CTCL, what's the most exciting news to date as of tonight?

LAUREN PINTER-BROWN, MD: I think one thing that's very exciting is that there's a drug that's been released specifically for their illness which has never happened before. It's a drug that was designed in the laboratory and where someone really thought through in what cases it would be the most useful and happened to be right.

MARIO MACHADO: That pioneering came from where?

MADELEINE DUVIC, MD: This drug is called ONTAK or DAB-IL-2. It was developed by a biotech company in Boston named Sarogen, which now belongs to Ligand Pharmaceuticals. ONTAK is a targeted fusion toxin. It takes T-cell growth factor to a T-cell that has a receptor on its surface and takes a poison in, the diptheria poison that kills the cell. It's like those smart missiles that we watched during the Persian War that hit the buildings, went through the window and knocked down the building because it's targeted to the T-cells.

MARIO MACHADO: This has never been attempted before?

MADELEINE DUVIC, MD: That's right. It's the first fusion protein that has been approved by the FDA.

MARIO MACHADO: What results have come forth and the patients that have been given this treatment?

LAUREN PINTER-BROWN, MD: There have been studies done which have allowed for the drugs release in patients who had had a lot of previous treatments and had found them not useful any longer. About a third of them got responses. Now the drug is on the market. Perhaps we may see that it is even more useful in some patients that have not had so many treatments before it.

MARIO MACHADO: FDA approved therapy.

LAUREN PINTER-BROWN, MD: Yes.

MARIO MACHADO: First time ever.

MADELEINE DUVIC, MD: Right. It's given IV by infusion. It's given five-days a week every three weeks. I've seen tumors that were unresponsive to chemotherapy melt with it.

MARIO MACHADO: Are there some treatments being proffered out there that are a little premature, that haven't really been tested?

LAUREN PINTER-BROWN, MD: There are many drugs that are in trial right now. They are offered as trial experiences that no one knows if they'll work.

MARIO MACHADO: What about vaccines?

MADELEINE DUVIC, MD: There was a vaccine study done at the University of Pennsylvania that looked at vaccination to the T-cell receptor. The problem with T-cell receptors is that they're different from one T-cell to the next. These were vaccines in a can that came off the shelf. Really to do vaccines correctly, you really have to make a vaccine for every single patient's own T-cells. These did have some results but they are very preliminary studies.

MARIO MACHADO: The common interpretation of vaccines is that it is preventive. You take it not to get something.

MADELEINE DUVIC, MD: Right.

ARTURO MOLINA, MD: To stimulate the immune system to attack whatever it is you're trying to prevent.

MADELEINE DUVIC, MD: They are therapeutic vaccines and then there are preventive vaccines.

ARTURO MOLINA, MD: But the concept of targeting the treatment is one that's very important because in general, the chemotherapy that we use for most malignancies is not very specific. It hurts the good cells and the bad cells. Now, as we're learning more about how to distinguish the bad cells from the good cells, we are trying to develop treatment that specifically target the bad cells and hopefully minimize the bad effects or side effects to the good cells.

MARIO MACHADO: We're coming to the new millennium. Other than some diseases or illnesses they will find a cure. What is the widest hope that you have for this disease that you're working on?

MADELEINE DUVIC, MD: We need more knowledge about the genetic changes that cause this. Once we understand what happens to the T-cells to make them malignant, I think that we'll be able to target those changes specifically and treat this cancer better.

MARIO MACHADO: Who is working on this? A whole array of people?

MADELEINE DUVIC, MD: A few people.

MARIO MACHADO: Enzyme inhibitors. I just have a list of some treatments. Enzyme inhibitors, computer-generated molecules, can we discuss some of this?

MADELEINE DUVIC, MD: There is a computer-generated molecule that inhibits a T-cell enzyme that's in clinical trials. We don't know how effective it is yet because we don't have the data. I think we should just say something about clinical trials because there are a lot of opportunities for patients to help with cancer research and get better treatments, but a lot of cancer patients won't go into clinical trials. Our government, Medicare won't pay for people to go on clinical trials and a lot of insurance companies won't pay for people to go on clinical trials. That really keeps us from getting new drugs.

MARIO MACHADO: What's the solution? What are you asking for?

ARTURO MOLINA, MD: Patients can stand up and speak up. When they are rejected by the insurers, they can sometimes appeal the rejections, for example. It will require patients empowering themselves. But it is a problem when we're trying new treatments and an insurer will say, ³This is experimental so we're not going to pay for it.²

MARIO MACHADO: But also you're faced with a fight with a small constituency. You don't have a lot of patients.

MADELEINE DUVIC, MD: This is a general problem for all of cancer and all of medicine. It's not just for CTCL. It's a real problem.

I think there is one other area that I'd like to mention and that is Vitamin A compounds, retinoids that are selective for this disease may be developed as we know about it. One that has been tested recently is bexarotene or Targretin. It looks like it's going to be extremely effective in some of the worst forms of CTCL Sézary patients and also in early patients. It works in all stages of the disease.

MARIO MACHADO: What stimulates you to go on?

MADELEINE DUVIC, MD: My patients and knowledge.

MARIO MACHADO: Tell me about your patients.

MADELEINE DUVIC, MD: They're wonderful and they want to learn more about their disease and they want better treatments. They're grateful for what we do for them I think.

MARIO MACHADO: What frustrates you?

MADELEINE DUVIC, MD: What frustrate me? There are too many patients and not enough time to do research.

ARTURO MOLINA, MD: I agree with that.

MARIO MACHADO: You sure of that.

LAUREN PINTER-BROWN, MD: I think it's frustrating not to have more things that we can do and things that work better.

MARIO MACHADO: But don't you go to the office like most of us do in the morning, your lab and plow into finding new discoveries every day.

LAUREN PINTER-BROWN, MD: I'm not sure about every day, but because it's very busy there are a lot of patients to be taken care of.

ARTURO MOLINA, MD: Often a lot of the knowledge comes from the patients themselves. When you listen to them carefully, they will tell you something that's not in a textbook. I think that is what I find very wonderful about what I do. Everyday I learn something. It's often my patients who teach me that.

MADELEINE DUVIC, MD: That's right.

MARIO MACHADO: Patients today are willing to talk about their diseases more freely than they were ten, fifteen, twenty years ago. Doctors were less willing to listen I think in those days. You're sort of interactive doctors today.

LAUREN PINTER-BROWN, MD: We hope so. We're in the process with our patients as partners. It's not really you come to me, I give you a pill and fix it. You walk away. I think it's really a partnership and we need to work together to figure out what's the best solution for that particular person.

MARIO MACHADO: Let's summarize again. In the few minutes that we have remaining. What should a person do if they suspect that they have CTCL?

MADELEINE DUVIC, MD: They should go see their dermatologist.

MARIO MACHADO: First step.

MADELEINE DUVIC, MD: Yes.

MARIO MACHADO: And then?

MADELEINE DUVIC, MD: If the dermatologist thinks CTCL, they should have a biopsy taken.

MARIO MACHADO: And then?

MADELEINE DUVIC, MD: If the biopsy suggests MF, they should have a work-up and depending on their stage, see a specialist or an oncologist. It's a step-wise process. If it's not CTCL but suspicious, they should have another biopsy in the future because oftentimes it takes several.

MARIO MACHADO: I'm on the Internet tonight and I'm listening to you three respectable and respected doctors. I don't have access to sophisticated medical centers in my town. I've got a laptop and I'm able to plug in tonight. Where do I go? Who do I find information from as to where I should be going to look after this problem that I have -- suspected problem?

LAUREN PINTER-BROWN, MD: I think there are several avenues. One would be the patient group that was discussed before. I have a very big database, if you will, of which doctors are specialists. In addition, there is an international society for cutaneous T-cell lymphoma and they maintain a webpage as well with the members of that group and where they're located.

MARIO MACHADO: Do you have the website off the top of your head? The chat-room?

LAUREN PINTER-BROWN, MD: No.

MARIO MACHADO: Do you participate in the chat-rooms occasionally?

MADELEINE DUVIC, MD: No.

MARIO MACHADO: Why not?

MADELEINE DUVIC, MD: It's for the patients.

LAUREN PINTER-BROWN, MD: I do read the messages and the main reasons I do is because I have learned about a lot of things that patients do that I may not be aware of. I have learned about how doctors' words impact patients and how they interpret what is said, so that I can talk to my patients in a more humane fashion and in a more communicative fashion. I really learn a tremendous amount from hearing or reading the conversations between patients about how I can improve what I do.

MARIO MACHADO: One thing that I forgot to mention is cultural differences. I think we've run out of time. Does that impact how you can apply treatment? People from different cultures?

MADELEINE DUVIC, MD: Definitely.

MARIO MACHADO: For sure. All right. I want to thank you three experts for being with us today to share your knowledge. Thank you for joining us as well. I'm Mario Machado.
Produced on:

Copyright Healthology Inc., A Health Education Company
Privacy Policy - Disclaimer - Editorial & Sponsorship Policy

Return to the Lymphoma Information Network

Copyright © 1998-2001 Lymphoma Information Network - All Rights Reserved
http://www.LymphomaInfo.net/

My Favorite Quote

2005-10-10T16:09:00.000-06:00

Care about what other people think and you will always be their prisoner.
-James Frey, A Million Little Pieces (Pg. 139)

My Friend, Andi, Summarizes my previous post

2005-10-09T21:19:00.000-06:00

okay Renee, you are getting complicated!

Let me get this straight:

The good: - no more interferon shots! you will be feeling better! maybe not as tired.
- Sezary cell count down, yea, this means you are getting well!
- Duvic sees improvement! must be true, she is brutally honest
- new medicine doesn't stain, less things to wash!
- you DO NOT have hepatitis, you don't need any more serious conditions!
- you are still skinny, how fun!!!
- you won't have to fight Keith for the bed covers,
- you love the heat, so no need to fix A/C compressor!
- you have unbelievable, supportive friends and family who love you!

That all sounds really good!!! I am so happy for you!! The good news seems to outweigh the bad. And of course the BEST NEWS?

GOD IS THE ONE IN CONTROL and he is so awesome! He loves you and you will be healed.

The Good News and the Bad News

2005-10-06T17:34:00.000-06:00

I have good news and I have bad news…
I just returned this week from my appointment with my doctor and treatment. Here are the results from meeting with Dr. Duvic.
The good news: She is seeing lots of improvement
Some background: On Tuesday Keith and I noticed large bright red welts all over my arms and on my legs. We wondering if it was an allergic reaction to the antibiotics I’m on or was it because I didn’t do my wraps the night before [I had taken my interferon shot that day and came home Monday night sick and feeling really crummy].
But Dr. Duvic said it was none of that. It’s that my Sezary Cell Syndrome (which is in your blood) is diminishing and all the MF cells are rising to my skin. My Sezary Cell count has gone from 92 percent to 73 percent in just 3 weeks. What a blessing and gift from God.
The bad news: because all the cells are manifesting themselves on my skin, I have to start using Nitrogen Mustard on my entire body. This is a chemo therapy that is highly toxic. I’m to smear it all over my body and for now, leave it on for 2 hours. I had heard so many horrible things about it from my news group buddies who all have MF that I confess I didn’t even open the jar until today (Friday). It seems that mine is mixed with aquaphor so it is clear. I guess everyone else is yellow because people talk about it staining all their clothes, sheets, etc. So I don’t think I will have to worry about that. However, anything I wear or touch I have to wash separately and wash 2x. When I start using it at night it is probably a good idea that Keith does not sleep with me. After all it is a poison. It was used quite affectively as a poison in WWI!
Here is the definition: any of various poisonous compounds originally developed for military use (see poison gas ). Like mustard gas and lewisite, it is a vesicant (blistering agent). In the form of its crystalline hydrochloride it is used as a drug in the treatment of Hodgkin's disease , non-Hodgkin's lymphomas , and brain tumors. Nitrogen mustards cause mutations in the genetic material of cells, thereby disrupting mitosis, or cell division. Cells vary in their susceptibility to nitrogen mustards, with rapidly proliferating tumor and cancer cells most sensitive; bone marrow, which produces red blood cells, is also sensitive, and depression of red blood cell production is a frequent side effect of nitrogen mustard therapy. The nitrogen mustards also suppress the immune response (see immunity ).
More bad news: It cost us $212.00 for two jars. They said insurance showed the cost was $212.00 and that’s what we had to pay. I can only get the mixture at MDA.
The bad news: My liver enzymes jumped 3x’s from last time. My count was 1,070. So Duvic said “You have hepatitis.”The good news: When I asked do I have A, C? She said no, no you don’t have the disease you just have elevated liver enzymes. Even the resident said she thought it was weird that she used the term hepatitis.
The Good news: Duvic took me off the Interferon. So maybe the sickness, tiredness, depression will lessen.The bad news: Is it the Interferon that is keeping me skinny???? Now I’ve got to learn to eat right so I don’t gain back all my weight, especially since I gave away all my “fat” clothes.
The bad news: Because she took me off the Interferon she now wants me to come to MDA every TWO weeks for my photopheresis.
The really bad news: I told Keith on Tuesday while I was having my treatment that I was finally tired of this. And now with the added regiment of having to put the Nitrogen Mustard on every day for 2 hours, then take a bath, then do the wraps and having to go to Houston every 2 weeks, well I can finally see how cancer can be all consuming. For now until I can work up to using the NM over night I think it will be easier to do it in the morning before I take my bath. I’ve not been too keen ever on taking showers anyway, and the thought of taking TWO in one day really distresses me. I know, I know, how shallow can I be??? I just can’t see coming home, putting it on, taking a shower then doing my wraps. But also I don’t want to be missing so much work, but I have to confess yesterday I felt more blue than I have since before I found out what I had. Also, the fact that my car compressor went out and it’s going to cost 1200 didn’t help any feelings of well-being I might have been able to “mustard” up! Ha!!
The really good news: However, all that said, God is still in control and HE is so GOOD. And this is what He is using to heal me, not just put me in remission but actually heal me. I still hold fast to that promise.
So I give thanks to God for seeing improvement even in the midst of what looks like set-backs. Pray that I will find a rhythm that allows me to take care of myself, and still be a blessing to my family and my job.
Bless you all for your touching e-mails, support, prayers, and love. I couldn’t make it w/out you all!!!

Another day, another hour waiting for the Doctor.

2005-09-21T18:51:00.000-06:00

There I am perched on that little table in the doctor’s office (how in the world do football players lay/sit on those things???...but I digress) and in walks a Medical Student. He appears to have no clue why he is there, so being the helpful person I am I begin pointing out new spots on me and my smaller lymph nodes, and he looks, and he feels tentatively, obviously clueless. Then the resident comes in. She looks at his notes he has made and rapidly begins "shoulding" on him… you should look at this, look here, you should have made a note… and on she goes while he stands quietly aside and trying to take it all in.

The atmosphere of Dr. Duvic’s staff and office is she’s the Queen of England… and then there are her servants. And when the queen is absent, the head servant then flexes her/his authority. It really is quite funny. So the resident point out a few spots on my legs that ares clear and then she looks at my back. Wow your back looks good, she says. Then the queen comes in. She is looking me over while the resident points out a spot here, a spot there. The queen turns me around and says, Your back looks good. Keith and I are listening but trying to ask questions from our list we have complied. She answers never looking at us and writing some numbers on a piece of paper and adding them up. When she finishes she proclaims, you are about 30lear and explains that means I still have plaque over about 70f my body. She does agree that my lymph nodes are smaller. Good news? Who knows… she doesn’t comment. When she gets to my feet, which really do look 100etter, she says this is not good and writes 3 scripts for my feet. At the last minute she has the resident swab them for staph, which I have … AGAIN! It was interesting when I got the call from the Resident telling me I had the staph infection and needed to be put on antibiotics; I was at my primary doctor’s office. So that made it easy to get the prescription. Didn’t have to count on Walgreen’s to get it wrong.. I mean right. (see 4th paragraph for what that is all about). I also asked the resident while I had her on the phone what my blood tests showed. She said it looked like my T-cells were down (good sign) but my Sezary Cell count was back up. Earlier she had commented that staph infections were very common in Sezary patients… so maybe it was the staph infection that made my count go up???? Anyone??? No one knows about this MF. I had a nurse tell me that her daughter-in-law is going to school to be a PA (Physician Assistant for all you non-medicals… as if I know any??) and she had told her daughter-in-law about me so when they got to the T-cell lymphoma her daughter-in-law was quite interested, but they ended the short lecture with “but don’t’ worry about this, it’s so rare you’ll never see it!!!”

Ok, back to Duvic: She looks at my last blood tests and says your iron count is low, very low. Turns to the resident (who I’ve never seen before, btw) and says, have we done a comprehensive iron count on her? She then looks at me says, “That can be a sign of colon cancer.” and smiles! She asked if I had ever had a colonoscopy. I said No, and she said, Well it’s a good idea, you are 50. Like she has to remind me?? She continues to look at her notes and suddenly her head jerks up and she says, “Why aren’t I seeing you every time?” Meaning the fact that I come every 3 weeks for my photopheresis and have seen her only 3 times in the last 5 times I’ve been there. Keith and I just shrug and think to ourselves, well you never said we needed to see you every time I came for my photopheresis! So now I’ll be going on Wednesdays and Thursdays. I think. She may have clinic on Tuesdays but we didn’t get a chance to ask because suddenly she was gone. The room becomes eerily quiet; Keith and I look at each other and say “Are we done?” But wait there is more… suddenly the door opens and in walks in a beautiful medical student female and she says, Dr. Duvic said I should look at your skin. She looks and says “Oh your back looks good.” And she walks out the door.

One question we were able to voice was the fact that I’m having trouble with Walgreen’s renewing my prescriptions. Because the residents usually write my scripts, then they move on when a renewal is ready, the faxes are not getting to Duvic. And then I asked them to call her nurse, Johnny and later they told me his voice box was full. Well it was a mess. So Duvic, pops up as I’m asking/telling her this and she snaps, “Get me Johnny.” Johnny walks in and she says “Johnny we have an unhappy patient!” I’m trying to explain to Johnny I’m not really unhappy I’m just trying to make it easy for ME to get my meds. After all I AM the one with cancer, right? The conclusion I’ve come to is I need to call Duvic’s office and renew my own scripts (am I using that word correctly all my medical friends?)

My skin is looking better. We (that would be Keith) continue to do the wraps every night. If I miss a night then I get these ugly bumps on my thighs (talk about cottage cheese) and itch more the next day. We are down from about 2 18oz bottles of lotion every week and half to about one every 3 weeks. It’s so nice to not be so dry. And while I can still be cold at times its no where as bad as it was!!! I’m actually cold when other people are and I’ve been pretty hot some of these 100 degree days!

One strange thing that I have no explanation for is my Interferon shots will some days just wipe me out (very fluey feeling) and then the next shot I’m just fine. It’s weird and I just never know will I be ok after my shot the next day or the next? If I take some ibuprofen and go to bed I’m all better the next day! I still continue to handle it better than anyone else I’ve encountered who has taken these shots. Oh yea, Dr. D also said I have a touch of hepatitis but that is common when taking Interferon which is used to cure hepatitis C… I get so confused.

Overall I’m really doing great. I have learned when I run out of gas… I go to bed. No matter what time or day and I sleep until I wake up on my own and then I’m ready to go again. I think doing this has given me more energy overall, and I’m more focused (though my boss may disagree). Keep praying. It’s your prayers that is making this all bearable. God has been so good to me. And faithful I still have no doubt that HE will cure me from this “don’t worry about this cancer, it’s so rare you’ll never see it” MF!!

Words can’t express how much your love and support and house cleaning (hey that’s probably why I have more energy… someone is cleaning my house almost weekly!) has been a blessing to me and my family. I love you all dearly and pray the Lord will bless you all 3-fold with the blessings you have poured out on me.

Ok, it’s late I’m not going to check this … I want to get it out and I know you all will give me grace!

Oh p.s. When we moved to our new house our bathroom has a wonderful Jacuzzi tub. Well I’ve never been able to take baths because it only made my skin worse. But this past weekend I was exhausted and thought a bath would feel so good! So I thought I’ll just chance it and Praise the Lord it didn’t bother my skin at all!

--------------------------------------------------------------------------------

Thursday, September 1, 2005 11:22 AM CDT

Another weakly update ;)... on the 14th of September I'll see the Doctor so I should have lots more news!

I don’t have much to report. I went for treatement last week and my mom came and she journalized every moment in pictures. You can see them under photos at the bottom of the page. I did choose to leave some of the pictures off, like the one where they were trying to get my IV in. I decided, since my right arm always cramps during treatment, I’d use my left arm 2 days in a row. AGGGG, my vein rolled. And I hate, hate, hate having my blood taken, so I was NOT happy. But they called Joe over and they finally got it.

The wraps continue to work… less flaky skin and less itching. And of course w/this WONDERFUL 100 degree weather I got to wear a sleeveless dress yesterday (ok I did have a jacket on too)

I continue to be exhausted even after 11-12 hours of sleep. But I hear this is absolutely normal with taking the Interferon shots. And then there is the brain fog. Also typical with Interferon. In fact yesterday after I took my kids to school, I was listening to the news about Katrina. I got out of the car and went into the house. When I got ready to leave to come to work, I searched the house for my keys and finally looked outside in my car and yes there they were, on auxiliary. So I had to get a jump, etc.

I’ll be joyous when God completely heals me and several other people in my life will too :^)… My husband, my kids, and my boss!

The weight loss continues (which is the fun part) and did you know that you have to get your glasses tightened if you lose 40 lbs??? They kept falling off my face.

Again, thanks for all your love, support and prayers. You all have been so kind, patient, and encouraging to me! So check out my new pics. ~ Renee

P.S. Not checked for missing words, bad grammar, or flow of thought.

Reports from Houston - August

2005-08-17T18:44:00.000-06:00

Another Weakly Update ;)

Why do Texans think they have to keep the a/c set on 72 or lower? I know it gets hot here, but hey, think how much energy and money we would save by turning up the thermostat a few degrees.

So it continues my dear friends and family… I’m still cold. It's been 7 days since my last treatment and while I admit I’m not as cold, as I type this I have the heater going, shawl draped around my shoulders and the unibomber look is backkkkkkkkk!!!

Ok, enough griping. I don’t have much to report. I went to Houston last week and had my photopheresis treatment. Told the doctor in charge of the machines about me not being as cold last time and he said, “oh well, let me know if it happens again and I’ll talk to Dr. Duvic.

Ok this is now a week later and I’m finally getting this finished. Here’s what’s happen this week:

I HAD NO IDEA

On Saturday night Keith and I went to a very nice restaurant to eat. After we got up to leave I realized that I had not been cold or itchy for the 2 hours we had been there. Ok, granted, I had on a turtle neck sweater, heavy knit sweater and sat with my back to a large window that faced West and was still warm from the afternoon sun! Oh yea, and it might have been the Amarula (On the wide-open plains of Africa grows a tree uncultivated by man. Scientists call it "Sclerocarrya birrea", but it is more commonly known as the Marula tree. The tree only grows in one area on the entire planet, the warm, frost-free (unlike me!) regions of subequatorial Africa. It is from the fruit of this mystical tree that Amarula Cream is borne). and coffee! OH MY GOSH… now that made me feel very warm. Anyway, I had no idea how much energy of each day I’m spending trying to keep warm and not scratch.

My skin continues to look better but I’m sooooooooooo tired. Today I slept (after 8 hours last night) 5 hours and I’m ready to go back to bed again. I had turned off all the phones, put the answer machine volume on 0, left my cell phone downstairs, but dang, forgot to turn off my pager. So if my pager had not gone off who knows how long I would have slept.

Now to the important stuff, prayer requests: I mentioned earlier the woman in Marble Falls who has MF and has been doing those wild wraps (lay on a bed, smothered in a steroid cream, wrapped in hot towels, trash bags and blanket) well anyway, she said that she was completely itch and flaky free. So Keith and I have committed to doing these wraps each night. It is time consuming, but if it helps w/the itching then it’s worth the time and effort. So pray that we will be up for this challenge each night, when we are both tired. Pray for me not to be exhausted. My job, my house, my kids are all suffering because of my extreme tiredness. I’m still cold.

I’m off to Houston again next week. I won’t have any information really until after September 14 when I see Dr. Duvic again

Meeting w/Duvic - July: another "Weakly" update

2005-07-21T18:37:00.000-06:00

My Weekly (or should I say weakly? update not because I feel weak but because I'm so bad about updating weekly).

So I finally saw Dr. Duvic last week. My appointment was scheduled for 2:15 pm and we got into a room about 4:15 pm and left at 5:15 pm! Of course I saw her resident first. A very beautiful oriental girl with perfect skin… I mean geez, what is that all about? Sort of a Beauty and the Beast theme going there! Dr. Duvic, flies in, looks me over, says “You’ve still got staff infection” She’s barking orders to the resident, who is responding with “I’ve done that…" in a snippy voice. Ya think they had a hard day? being 3 hours behind time? Ok, we’ll give them all the benefit of the doubt.Of course they repeated "You've got to quit scratching." Which I wish I had replied... "Yea, right that's like telling Richard Simmons to not be so PERKY!!"

My mom asked, Well did she have ANYTHING good to say? Well she did…she said my back looked good. (Viewings available between 1:30 pm and 3:30 pm Monday-Friday, by appt. only on the weekends) Well here are the good things I have to say!!!

1. I’m not as cold… in fact today I was actually HOT in my office. Thank you thank you thank you for praying for that. I can sit in a restaurant and not look like the Unabomber (for those of you who have NOT seen me in my hooded sweat jackets, that’s what that refers to)
2. I’m still losing weight… not a fun way, but I can stand to lose another 20 lbs.
3. My skin is beginning to look and feel like skin. Several comments of “I think I see pink, Renee” and “you're not purple anymore” and then my husband said after putting lotion on my back this morning “You skin feels like skin finally!”
4. And how is the itching you ask? Oh I still am! I’ve been reading a book of short pithy stories called “Stories from the Front Porch” and decided to try my hand in writing something like that about all the ways I find to scratch. I've posted it in a seperate post.

I’ve been very tired the last 2 days, but it may be because I’m now on 2 antibiotics. Got another bladder infection. That is what will kill you with this cancer… the infections. I’m trying very hard to keep infection at bay. But with all the scratching it’s hard. So pray God will protect me from myself. Once again, thank you all so much for all your love, prayers and support. You are my angels everywhere I go!

Oh yea, forgot to mention I've been griping because I've lost almost 30 lbs and I can't wear any little, cute, kicky sun dresses or skirts because I'm NOT that warm yet. Let me see... I think I read somewhere "Vanity is thy name, oh woman!"

Journal Entry 4 - Staging, Meds & Definitions

2005-06-29T17:47:00.000-06:00

I know many of you have been wondering “When is she going to update her web page???” Well not all that much has changed so there wasn’t much to tell, but since everything at my office is kaput (the new software program we just installed) and I can’t do anything else because MY computer is sporting the BSOD (blue screen of death) I thought this would be a perfect time to update you all on my progress. And we are making progress. I've included a bunch of medical stuff for all my medical friends reading this. The rest of you (like me) can just skim over it!

I finally got staged . Definition of stage: to determine the phase or severity of (a disease) based on a classification of established symptomatic criteria ; also : to evaluate (a patient) to determine the phase, severity, or progression of a disease.

With MF staging is determined usually by biopsies, however, because MF was found in my lymph nodes the automatic staging is IVB. (read: most people w/"normal" cancers staged at IVB are given a prognisis of a year to a year and half)! Yes, I win the prize for being staged at the highest stage given to MF patients. But then all can see how BIG MY GOD really is! So I’m not discouraged in the least about this staging! God is so good and He loves me so much (you all have proved that time and time again). So why am I staged at IVB? Well the T-cells are in my blood, in my bone marrow, BUT not in my organs. (though some contend you can't be IVB w/out organ involvement). There is a spot on my kidney, which I've had for a while, that Duvic (my doc at MD Anderson) wants to do a sonogram on but she feels its nothing.

I will be back in Houston on July 13th to see her. So I’ll have more of an update on what SHE thinks of my improvements.

Because of the T-cells being in my blood I not only have Mycosis Fungoides, but also Sezary Cell Syndrome. Se·za·ry cell: any of the large mononuclear T cells with irregularly shaped nuclei that are characteristic of the Sezary syndrome. Albert (1880-1956), French physician. Sézary was associated with clinics and research laboratories in Paris. He specialized in venereal disease and diseases of the skin but also did research within neurology and endocrinology. His publications covered such topics as disorders of the adrenal glands, tuberculin therapy, and antituberculous serotherapy. He was the author of a number of works on syphilis and its treatment and a dermatology text. I know more than you wanted to know!

I continue to have my photopheresis every 3 weeks (click on pictures link!) Here are the list of meds I'm taking (I know you can't wait!)

BEXAROTENE (Oral) (Capsule) This medication is also known by the following brand name: Targretin (Oral) Directions: TID (actually I take mine all at once!) 75 mg. Treats skin sores associated with a type of cancer called T-cell lymphoma. Another interesting tidbit w/Targretin: Do not eat grapefruit or drink grapefruit juices while you are taking this medicine. And of course my favorite side affects: Dry skin, itching, mild skin rash
And my favorite drug (NOT): Drug Name: INTERFERON ALFA 2B (Injection) (Injectable) This medication is also known by the following brand names: Intron A (Injection), Rebetron 1000 (Injection), Rebetron 1200 (Injection), Rebetron 600 (Injection) Directions: 3000cc 3x/week. It’s an “all around drug”, everyone should be taking it, *just kdding: Treats hepatitis B and C, lymphoma, skin cancer, genital warts, certain types of leukemia, and Kaposi's sarcoma (in people with AIDS). And the side affects of this is rather daunting: Possible Side Effects While Using This Medicine: Call your doctor right away if you notice any of these side effects: Allergic reaction: Itching or hives, swelling in face or hands, swelling or tingling in the mouth or throat, tightness in chest, trouble breathing  Dark-colored urine or pale stools  Depressed mood or thoughts of hurting yourself  Fast or irregular heartbeat  Fever, chills, cough, sore throat, stuffy or runny nose  Light-headedness or fainting  Muscle pain, weakness, or cramps  Nausea, vomiting, loss of appetite, pain in the upper stomach  Numbness, tingling, or a cold feeling in your hands or feet  Unusual bleeding, bruising, or weakness  Yellow skin or eyes If you notice these less serious side effects, talk with your doctor:  Problems with vision  Mild nausea, diarrhea, loss of appetite  Trouble sleeping. Yep I think that about covers body, mind and soul!

These 3 things each give me a 50% chance of putting my MF/Sezary in remission, however, we all know that God is going to cure me. And He will use what is at hand to do so.

All your prayers and love are my staying power, my upbeat mood, my ability to cope where I see many on the MF newsgroup despairing. Without God often there is no hope, but I have more hope than I certainly deserve.

Yes, I’m still itching, though sometimes not as bad. Here are my thoughts on how to stop me from scratching:
1. Put myself in a straight jacket. However, being half-Italian I’d never be able to complete a sentence because you know WE MUST talk with our hands.
2. Wear gloves. I’m already doing this because my skin is splitting like crazy. It’s the Michael Jackson look…however, I don’t think he gets his glove(s?) at Walgreen’s for $3.94! And since I get darker as he gets lighter might as well finish off the look.
3. I could do like the Bible says … if your hand offend you cut it off… but then who would bring you my updates?So I guess I’m stuck with itching and flaky, at least for a while!

The doctors said give photopheresis about 6 months and I should see some improvement.

Prayer requests: That I wouldn’t be so miserably cold. This is the only thing so far that has actually gotten me down. I spend all my energy trying to stay warm. That I’d quit scratching.  That the interferon shots will not make me sick.  That my hands would quit splitting. It hurts to do anything with them… like typing! And scratching (ok that’s feels so good, but I look for credit cards, keys, pens anything to scratch with… that’s bad) and handling paper, washing dishes, (good)… you get the idea.

Thank all of you for all your love and support and encouragement. Please forgive me for those of you I’ve not responded back… I intend too, but sometimes I get home and don’t even turn on my computer. Now you KNOW for sure I’m sick!

Update 3...Thursday and Friday at MDA

2005-06-02T17:45:00.000-06:00

I’ve been prodded, poked, scanned and stuck so many times over the past 3 days, I feel like a voodoo doll. Sorry its taken me so long to give you guys an update but Keith (aka Dick) and I (aka Lisa) landed at MDA at 8:45 am last Thursday, June 2 and didn’t leave until 9:15 pm. Needless to say with only some chicken noodle soup in my stomach since noon that day, because of my cat scan, I was starving and so was Keith. But more about that later.My day: June 2nd: I had an appt. with a doctor talk about my photopheresis (remember where my white blood cells get to party in the tanning bed?) at 9 am. However when we went to the front desk to get my schedule it showed a chest x-ray for 9:00. Well someone told me Dr. Duvic wanted every test repeated and boy did they mean it because I’ve had TWO chest x-rays since March. Tip: If you ever come to MDA and they ask you to bring your films from scans or x-rays, call your doctor’s nurse and see if the Dr. will REALLY look at them! Keith and I carried them around all day the first day and no one ever asked to see them!The different clinics are very forgiving if you don’t make your scheduled appointment on time… its just a guideline we quickly learned! Thus, because we really wanted to talk to someone about the photopheresis, we went to the 8th floor to speak w/the doctor who we had an appt. with. But alas, the doctor I was to meet with wasn’t even scheduled to work that day. So we played talk to the scheduler. Needless to say that wasted about an hour, but in the meantime I did get my chest x-ray while they figured it out. Fortunately everyone is so helpful and nice that the mess-ups really didn’t get me down and when we got back from my x-ray, we were told yes I could start the photopheresis. That was a real blessing, because my scheduled worked out that I could have the 2 day treatment that day and Friday, which meant we didn’t have to come back the following week. We hung out at the photopheresis lab waiting for a doctor to give the ok for my treatment. Finally they decided to just let me do it and then have the doctor come talk with me. But first I discovered I have to give blood before each photopheresis to see if my hemoglobin or heroglobin is ok. Did I mention I hate having my blood drawn? Actually, what I really dislike is having needles stuck in me by people who think that doing it real slow and saying, “now this is going to sting...” or my favorite: “a small stick” makes it better! So after a blood draw, some soup and I settled into my first session of photopheresis. It wasn’t too bad. I laid (layed? I can never get that right!) in a comfy bed with my arm (see photo at end of this trirad under photos) stretched out, palm up with tubes stuck in me that takes the blood out, spins it around, and puts it back in minus the whie blood cells... for 6 cycles. When the 6th cycle is finished and it has taken all my white blood cells it can manage, and put them in a little bag, then the bag empties into the tanning booth (it’s kind of like the Krispy Kreme, donut conveyor belt… or that snaking line at any amusement park. Its really neat in that the machine can tell how long your wbc need to be in the tanning salon. On Thursday they went thru the bed for 32 minutes. Then on Friday, it took 56 minutes! Guess they heard about the great party the others had on Thursday. All you can feel is when the machine is pumping out blood a thumping where (they tell me) the needle is hitting the top of my vein. While my blood was being washed, Keith and I watched a movie… The Phoenix, it was pretty good. I wanted to watch the Notebook, but we weren’t sure how my sobbing loudly would affect me or the people around me. I’m really blessed to have good veins and had a pretty good pumping rate, thus making the process go faster. Finally we got to see a doctor who explained more of the process I was undergoing. The best news is he thinks in about 12 procedures (a procedure is one day’s worth) I should see a reduction in my itching!!! So I’ll schedule treatments, every 3 weeks for 2 days until who knows when. One thing Dr. D. said that if we can keep me in remission with just the photopheresis. They say this cancer can never be “cured”, but they don’t know MY God!!!So I’ll continue to go to Houston every 3 weeks for my photopheresis, give myself Interferon shots 3xs a week, take my Targretin pills 3x a day (at $30/pill… thank heavens for insurance1), soak in bleach every other day and coat myself in Triamcinolone cream and then wrap myself in warm towels every night! Whew makes me tired just thinking about it! I’m doing amazingly well. The shots have not made me ill, or even a little bit fluey as they said it would. I do find myself getting tired more easily, so I’m trying not to be me, and get some rest, slow down, and go to bed at a reasonable hour! \Now for my top 10 reasons why I know prayer works:10. I’m no longer yelling at my kids so my eldest no longer has to say “I forgive you mom for saying the D word”9. When I shave my legs, I actually see hair on the razor rather than dead skin!8. My dry skin is greatly reduced!7. The itching is a bit better. Keith says I’m not scratching so frantically!6. I’ve not had any of the side affects they say I would have.5. When Keith held my hand the other day, he said, wow it actually feels smooth.4. When Alex put lotion on my back, she said the same thing. (didn’t realize I was like a lizard!)3. I think I see spots of the real “me” (color) beginning to show!2. Thru this process since I’ve had my blood pressure taken so many times, I realize I don’t need my hypertension meds anymore … my blood pressure is running 118/68 with out my meds! And the number reason I know prayer works1. Since I’ve been off the bp medicine, I’m not near as cold!!!!Thanks again for all your love, prayers, encouragements, and offers to help… I could go on and on. Again feel free to pass this on. If you want to be in my “special” e-mail list to make sure you get my updates, see the link below. Love you guys, and keep praying! God is being so incredibly gracious to me. We are going confound the medical field when I’m cured!!!!P.S. I’ve not proofed this like I should, but I’m tired now ;) and hope you will overlook any faux pas. . (yes Debra it’s true, I didn’t read it out loud or take a piece of paper and go line by line!)

Blood Work, Bleach Baths, and Body Shots ... my first day at MDA

2005-06-01T17:42:00.000-06:00

Blood Work, Bleach Baths, and Body Shots ... my first day at MDA, June 1, 2005
I had typed all my goings on today and then I lost it. So here is the brief edition:Saw dr. d. and here is what they are going to do.I need to have bone marrow test, CT scan of my entire body (yummy… that stuff they put in your veins makes you all toasty warm). And they hopefully will start photopheresis tomorrow..This is where they take all your white blood cells and they go to this tanning bed and little waiters take their orders for pina colada or white wine, then they come back to my body all happy No seriously here is what it is: Photopheresis, also known as extracorporeal photochemotherapy (ECP), is a form of apheresis therapy. It involves light-activated treatment of circulating blood cells outside the body. "Photopheresis may act by modifying the patient's own immune response to his/her disease. On this basis, the therapy is being extended to graft vs. host disease, organ transplantations, and early scleroderma and other autoimmune diseases." - roswellpark.org Here is how it’s down (you thought I was kidding!)Procedure outline:1) The patient ingests a light-activatable drug, called psoralen2) An IV (intravenous) line is placed in the patient, a drug called psoralen is sometimes given.3) Blood is temporarily removed from the patients. White blood cells and are separated out and the mixed outside the body with the patient's plasma, saline, heparin, and 8-methoxyposoralen. The preparation is then passed through a device where it is exposed to ultraviolet light. 4) The treated mixture and untreated blood is combined and returned to the patient. The procedure takes approximately 4 hours. I will have done every 3 weeks and it takes 2 days and can only be done here at MDA. We don’t’ have no tanning beds for white cells in Austin!I’m going to be taking Interferon shots. They build up your immune system but make you feel like you have the flu! Make sense to me! I take those 3 x a week. Next week I’ll take Targretine pills all this is to make my immune system better. If I get better we may not have to do chemo. But at least this will get my body in better shape for chemo.Also, I take bath with ¼ cup bleach every other day, get sprayed down with vinegar/water mixture and then slather this cream all over me, while keith is soaking towels in warm water that he will then wrap me in for 20 minutes. Suppose to help me w/my itching/dry skin. Dr. D said I’m cold all the time because my skin is not doing anything it’s suppose to do… like maintain heat! Also, she said she sometimes will put people with level of staph infection in the hospital, doesn’t think she will with me. I gave blood twice today… once for the record and second time because I signed up to be part of the clinical research. Didn’t realize what paper I was signing.And then I got my playboy shots. Yep, they took pictures of me in my almost birthday suit! Ok I’m off to soak in some bleach… I’ll get white one way or another.

Finding the right Dr.... God intervenes!

2005-05-21T17:39:00.000-06:00

... My life so far...
Where do I begin?? Ok, here is a summary of my life AC (after cancer)! As you know I was scheduled to go to MD Anderson on June 2nd to see a Dr. Heigimistercan'trememberhowtospellhisname. BUT, I really wanted to see Dr. M. Duvic. Not only because she's the leading specialist, world-renown, on the cutting edge, thinking out of the box, Mycosis Fungoides super woman, but also because I've heard she's real cool and groovy! So I called her office. They took my information. I called back... they said you already have an appt. w/an oncologist here at MDA. Besides you can't see her until June 27th. Keep your appt. w/the Dr. H guy and maybe he'll send you over to Dr. Duvic. Meanwhile in a Dermatology office in west Austin, Dr. Shaffer, my derm doctor is putting together a packet along w/pictures of Moi's arm, neck, face (I shudder to think what they look like) and getting ready to fax them to Dr. Duvic. His nurse calls Dr. Duvic's office. Her office declines the packet to be faxed, because, after all I ALREADY HAVE AN APPOINTMENT. But bless Dr. Shaffer's nurse she send them anyway. Dr. Duvic sends an e-mail to her schedulers (now how cool is that???) and says, make me an appt. with this Lisa Renee Atkinson person. Yesterday I get the call... they are babbling something about an e-mail and I can now see her and they need to make an appointment and ... they'll call me back. That's when I hit the wall. As many of you know I've been pretty, well how do we say it? Manic! So I crashed. Went to bed at 6:30 pm last night ... but feel much better today.So today I call and say Am I going to see Duvic??? When can I see Duvic???? Can it be sooner than 4 weeks???? And the answer to all these questions were Yes, Yes, and Yes. And I get to see her a day earlier than I was going to see the Dr. H. guy!!!! So a week from today, I'll be at MDA having who knows what done to my who knows what!Many of us all along felt like she was the one I was to see. So thanks for praying, thanks for keeping me in your prayers, they are the glue that is holding me together.You have all been AWESOME!!!! I love all of you guys who are reading this more than I can express. My family is blessed by you, I'm blessed by you!I'll try to write every 2-3 days and let you know what's up! What's down and what's sideways!

The Beginning... suspicions of Cancer (and some background)

2005-04-27T18:59:00.000-06:00

Backgound: Diagnosed w/Psorasis in September 2003. Oral medication seemed to help. As my skin got better itching increased. Began light treatments in Nov. 2004. All that happened w/that was I got really dark. Strangers in the grocery store would jealously ask, "where did you get that tan??" We also began every test we could think of... all my blood tests came back normal. Who knew there was a special blood panel just for MF?? Then I noticed I was losing about 2lbs every 4 days. Now this was good news! But scary.

Had a biopsy by my Dermetologist in March. Results: little psorasisis and photo dermetitis. (When my derm had the pathologist recheck after my diagnosis, he changed the diagnosis but wrote [perhaps to cover his you-know-what??], These findings are consistent w/those of CTCL lymphoma. This case is somewhat unusual in that there is a rather significant componment of spongiosis which is uncommon for cutaneous T-cell lymphoma. That's me: uncommon

I noticed a large lymph node in my thigh. When I mentioned this to about the 100th doctor I had been seeing my primary finally said you need to go see this surgeon. I met with Dr. Marcus and he and I both agreed that it was only a symptom of me scratching so much. He wasn't worried at all and scheduled my surgery in two weeks. Which really surprised the scheduler. She kept saying are you sure? I was like, oh it's no big deal. After all my blood tests kept coming back normal.

Finally, had appt. w/Dan, my primary doctor, this morning. Assured me he's doing everything possible. Worried about cancer. Having CAT Scan tomorrow in stomach and pelvis. Said don't worry if they see any shadows may not mean anything. I have tinneatis (sp??) in BOTH ears. My left one was totally blocked all weekend and couldn't chew at all. Because of the ear infection I rescheduled the surgery to have my lymph node removed. Now it will be on May 10th. Yea, 4 days before my fifth birthday. Happy Birthday to me! But on to the cat scan.

The cat scan came back positive. On April 28th the cat scan report noted 5 large lymph nodes. The largest being 3.3 x 2 and the smallest 2.3 x 1.1. Also included in the report was the comment about multiple other smaller lymph nodes.

Impression: Lymphadenopathy within both inguinal regions. Pattern worrisome for lymphoma.

Did I ever really feel this way? A telling letter to my Primary Dr. And his nurse!

2005-02-24T15:46:00.000-06:00

Looking back it's hard to believe I was ever this desperate. However, others tell me "Oh yea, Renee, you were that desperate".

Dear Dan and Bridgit,

I thought if I wrote you both, you would understand more fully what my phone call of Tuesday was all about.

If I sound frustrated, I am; terribly frustrated and I know it will be apparent in this letter. Bridgit when I was asking you to ask Dr. Rasor about tests, I was just throwing out some tests; like for leukemia or a body scan. I don't even know what a body scan is; the whole point for the tests is to discover if there IS SOME REASON WHY I KEEP ITCHING other than from psoriasis.

My itching is not getting ANY BETTER. In fact it seems the better my skin gets, the worse the itching. Here is my typical day. I have to take 1-2 Atarax (hydro whatever) every 3 hours or I feel like my skin is horribly sunburned. The Atarax only helps w/that feeling of being burned, and calms me down a little. I am NEVER ONE MOMENT FREE OF ITCHING. There is some place, some where, ALWAYS that is begging to be scratched. Then we have days like today where I pour on so much lotion I'm swimming in it and I'm so dry right at this moment I can barely type. Ok, that's an exaggeration but you get the idea.

Even though I take lots of drugs at night, my husband has had to get up every night this past week and sleep somewhere else because I'm tossing and turning. I find my self waking up in the middle of the night scratching. Though the sleeping pills are helping me somewhat, making me feel like I've slept a little, I wonder if I am getting any sleep??? I'm pretty irritable when I'm awake ;). BTW, Dan, those other sleeping pills you gave after Ambian, didn't work at all, so I'm back to using the Ambian (sp?)again.

So here are some things I'm thinking. What other avenues can we look at for my itching. My skin is looking great, the psoriasis is almost all gone. So why do I continue to itch? I understand there is some kind of saliva test you take or what about this (just found it on the internet): abnormally dry skin, sometimes called xerosis can cause itching. Can we test for that?

Here are some other things from this website: (http://health.discovery.com/encyclopedias/3074.html)

skin infections, such as scabies· body wide infections such as chicken pox· cancer or tumors, such as certain blood cancers known as lymphoma (oh if I had only known then what I know now!!!), multiplmylenomama, and polycythemia vera. Other tumors, such as a skin cancer called melanoma, stomach cancer or a carcinoid tumor, can also cause itching. Conditions with body-wide effects, such as chronic renal failure, certain liver conditions, such as cholestasis of pregnancy, or iron-deficiency anemia · autoimmune disorders, conditions in which a person's immune system attacks his or her own body. Examples include Sjogren's syndrome and multiple sclerosis. · hormone imbalances such as those that occur in diabetes. Low thyroid hormone levels called hypothyroidism and high thyroid hormone levels, known as hyperthyroidism, both can cause itching as well. psychological causes (well that made sense... I did feel like a nutcase!). These may include anxiety, psychosis or cocaine withdrawal.

Have we/can we checked my thyroid?

I'm just desperate. I'm about to go out of my mind, and I need to know that we are doing everything we can to seek out what is causing this.

Dr. Fox did mention we should give the light treatments at least a month. I'm willing to do that. But I'm very close to going for a month.

Also (I know I'm rambling) like today is just awful because it's cold and dry outside. However, this weekend when it was warmer or earlier this week when the heater wasn't going full blast, it was still bad, frankly that scared me because I've been thinking it's the cold dry air of winter and if only I can make it to the summer. But who knows?

So, I'd like you to consider other tests that rule out anything, ANYTHING, I don't care what it is. I just need to know that this itching is just my bane in life... a result of my psoriasis and not something else.

Make sense?

Thanks,

P.S. I didn't even mention the almost $2200 in office visits and meds since September 1, 2004 and all the time from work I've had to take.

The True Scratch that Satisfies

2005-02-06T19:55:00.000-06:00

I spend my entire day looking for ways to scratch. You wouldn't believe the items I've found that can temporarily relieve my itching.

Brake pedals are great. While at a stop sign, place the souls of your feet on either corner of the pedal and scratch away.
Pill Bottles make good scratches. The bottom of them.
You know those foot rests found under desks? Turn it over and you have a variety of surfaces to scratch with.
Tongue Depressors work well and you can be discreet when scratching your back.
Credit cards, my ASH state badge, any plastic piece is great for scrapping off dead skin and relieves the itch... temporarily.
Our conference room at work has a great edge on one of the legs, but when I start rubbing my feet on it, it's a little, how do we say?, disconcerting to have all your co-workers turn and eye you.
Pens, letter openers, knives (the ones at fancy restaurants work best because they are heavier and longer), brushes, I've tried them all.
Does it do any good? Only when I'm scratching. As soon as I stop, then the itch comes back and sometimes, pain depending on what I grabbed!

It seems to me someone very wise once said:
But seek first his kingdom and his righteousness, and all these things will be given to you as well.
Or I like how The Message puts it...
33 Steep your life in God-reality, God-initiative, God-provisions. Don't worry about missing out. You'll find all your everyday human concerns will be met.

So, do you think maybe, just maybe, if I spent as much time seeking the Kingdom of God as I do seeking something to scratch with, my true itch would truly be satisfied?

2005-01-07T13:51:00.000-06:00

Pictures

2005-01-06T19:23:00.000-06:00

Here are pictures of me getting my Photopheresis. Aww the life of Riley

A large needle extracts my blood a pint at a time for a total of 6 cycles. It drops my white blood cells into one of those bags then it goes thru the the sun tanning process:

The tanning bed is the picture with door open. See the lights. Just like a tanning bed. The white blood cells run thru there and get sunburned from anywhere from 29 minutes to 96 minutes. My average time was about 39 minutes of tanning!