There are 6 more of me!

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

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

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

Will that be Mustard or Mayo with that BMT

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

Here are a few exciting things I learned:

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

Fortunately, insurance pays for most of this.

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

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

1. 8 weeks of Skin Radiation
2. 2 weeks of Chemo (still never got an answer if that was every day, or what)
3. The possibility of having to shower 3x a day [I don't even like showering once a day... because it's borrrring]
4. Swishing stuff every 2 hours to keep mouth sores at bay [I'm impressed if I brush my teeth once on the weekends... I know too much info]
5. Using a collection hat [if you don't know what that is, you probably don't want to]
6. Keeping a record fluid intake... i hate having to keep records on myself!
7. Have my blood taken every day between 4am and 7am... just don't wake me
8. Not eating fresh fruits or vegetables
9. Learning to flush my central venous catheter (CVC)
10. Having a CVC

Two good reasons to have a BMT

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

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

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

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

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

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

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

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

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

1. 8 weeks of Skin radiation. Side affect? Makes the skin dry. Solution: have it done in Houston during the summer when there is lots of humidity. (BTW, when I asked Dr. Duvic if I couldn't have it done in Austin, she looks up at me w/this droll look on her face and says, "I wouldn't. It's very complicated procedure."


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


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

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

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

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

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

The Horrors of Pizza/Questions Answered

Update from my December 5th and 6th appointments.

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

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

Questions Answered

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

Answer: Probably not.

Conclusion: Ok, I have a perpetual tan.

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

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

Question: Will they ever go away?

Answer: Probably not.

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

A Prayer

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

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

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

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


~ Keith Atkinson

WOW WOW WOW...

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

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

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

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

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

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

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



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

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

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

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

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

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

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

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

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

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

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

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

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

May you experience the love Christ has for you!

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

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