All right an Update at last...

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

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

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

I wouldn't do it!

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

There are 6 more of me!

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