The Good News and the Bad News

I have good news and I have bad news…
I just returned this week from my appointment with my doctor and treatment. Here are the results from meeting with Dr. Duvic.
The good news: She is seeing lots of improvement
Some background: On Tuesday Keith and I noticed large bright red welts all over my arms and on my legs. We wondering if it was an allergic reaction to the antibiotics I’m on or was it because I didn’t do my wraps the night before [I had taken my interferon shot that day and came home Monday night sick and feeling really crummy].
But Dr. Duvic said it was none of that. It’s that my Sezary Cell Syndrome (which is in your blood) is diminishing and all the MF cells are rising to my skin. My Sezary Cell count has gone from 92 percent to 73 percent in just 3 weeks. What a blessing and gift from God.
The bad news: because all the cells are manifesting themselves on my skin, I have to start using Nitrogen Mustard on my entire body. This is a chemo therapy that is highly toxic. I’m to smear it all over my body and for now, leave it on for 2 hours. I had heard so many horrible things about it from my news group buddies who all have MF that I confess I didn’t even open the jar until today (Friday). It seems that mine is mixed with aquaphor so it is clear. I guess everyone else is yellow because people talk about it staining all their clothes, sheets, etc. So I don’t think I will have to worry about that. However, anything I wear or touch I have to wash separately and wash 2x. When I start using it at night it is probably a good idea that Keith does not sleep with me. After all it is a poison. It was used quite affectively as a poison in WWI!
Here is the definition: any of various poisonous compounds originally developed for military use (see poison gas ). Like mustard gas and lewisite, it is a vesicant (blistering agent). In the form of its crystalline hydrochloride it is used as a drug in the treatment of Hodgkin's disease , non-Hodgkin's lymphomas , and brain tumors. Nitrogen mustards cause mutations in the genetic material of cells, thereby disrupting mitosis, or cell division. Cells vary in their susceptibility to nitrogen mustards, with rapidly proliferating tumor and cancer cells most sensitive; bone marrow, which produces red blood cells, is also sensitive, and depression of red blood cell production is a frequent side effect of nitrogen mustard therapy. The nitrogen mustards also suppress the immune response (see immunity ).
More bad news: It cost us $212.00 for two jars. They said insurance showed the cost was $212.00 and that’s what we had to pay. I can only get the mixture at MDA.
The bad news: My liver enzymes jumped 3x’s from last time. My count was 1,070. So Duvic said “You have hepatitis.”The good news: When I asked do I have A, C? She said no, no you don’t have the disease you just have elevated liver enzymes. Even the resident said she thought it was weird that she used the term hepatitis.
The Good news: Duvic took me off the Interferon. So maybe the sickness, tiredness, depression will lessen.The bad news: Is it the Interferon that is keeping me skinny???? Now I’ve got to learn to eat right so I don’t gain back all my weight, especially since I gave away all my “fat” clothes.
The bad news: Because she took me off the Interferon she now wants me to come to MDA every TWO weeks for my photopheresis.
The really bad news: I told Keith on Tuesday while I was having my treatment that I was finally tired of this. And now with the added regiment of having to put the Nitrogen Mustard on every day for 2 hours, then take a bath, then do the wraps and having to go to Houston every 2 weeks, well I can finally see how cancer can be all consuming. For now until I can work up to using the NM over night I think it will be easier to do it in the morning before I take my bath. I’ve not been too keen ever on taking showers anyway, and the thought of taking TWO in one day really distresses me. I know, I know, how shallow can I be??? I just can’t see coming home, putting it on, taking a shower then doing my wraps. But also I don’t want to be missing so much work, but I have to confess yesterday I felt more blue than I have since before I found out what I had. Also, the fact that my car compressor went out and it’s going to cost 1200 didn’t help any feelings of well-being I might have been able to “mustard” up! Ha!!
The really good news: However, all that said, God is still in control and HE is so GOOD. And this is what He is using to heal me, not just put me in remission but actually heal me. I still hold fast to that promise.
So I give thanks to God for seeing improvement even in the midst of what looks like set-backs. Pray that I will find a rhythm that allows me to take care of myself, and still be a blessing to my family and my job.
Bless you all for your touching e-mails, support, prayers, and love. I couldn’t make it w/out you all!!!