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.
February 03, 2008
June 01, 2007
How much blood do I have?
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.
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.
May 15, 2007
Short Version of last 2 posts
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.
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
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.
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.
May 10, 2007
We'll get this expedited...
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!!!
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!!!
March 21, 2007
My life so far...
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.
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.
February 04, 2007
Whiny report date log February 4, 2007!
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!
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!
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