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???

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!

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

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!

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

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

Definition of Chemobrain

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

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

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

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

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

I'm one in a ????

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

Symptoms of Hypothyroidism

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

Symptoms of Hypothyroidism

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

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

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

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

Here are some numbers for you:

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

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

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

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

Date Log 10/9/06: God Moments II

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks for listening.

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

The Toothbrush

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

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

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

Comments and thoughts welcomed!

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

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

28 Vials!

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

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

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

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

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