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!
January 04, 2007
Update on my retirement
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!!!
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!!!
December 23, 2006
Updates
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!
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
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!
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!
December 02, 2006
Candida... My acupuncturist finally was right
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...
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...
December 01, 2006
Amoxicillian
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!
November 27, 2006
Date Log: 11/27/06: Good News & so-so News
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.
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.
November 23, 2006
Oh I forgot 2 things - A God Moment
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!
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
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.
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.
October 28, 2006
No More Thrush
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???
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???
October 26, 2006
Real Skin and Thrush
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!
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!
October 17, 2006
Date Log: 10/16/06 While on my way to Houston...
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
October 15, 2006
Date Log: 10/15/06: Will the Itching ever stop?
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!
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!
October 12, 2006
Date Log 10/12/06: Validation & Day 10
I can now blame my dinginess on a real live medical reason! Chemofog/Chemobrain
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!!
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!
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!
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