That's what they say, isn't it?
My cancer, which was successfully knocked out with my February, 2011 stem cell transplant, is back.
Stop! It's bad, but not hugely bad. I will explain.
In Multiple Myeloma a patient has an overabundance of a corrupt protein. Mine is the IgA. Most MMers have a corrupt IgG, but 20% have IgA. An even more rare occurrence is a problem with the IgM, IgD and I think there are others......but they don't pertain to me and it is a Maggie-centric universe, so we move on.
The point of chemo for us it to knock the corrupt protein down and keep it down. Some patients stop there. The SCT (stem cell transplant) people go further. A successful SCT can work to the point where the cancerous protein can't even be seen. This is described as a "complete remission" or CR. That was the case with me. After my SCT, which has been described as being brought to deaths door and then being snatched back, my cancer could not be seen. I was in CR.
I was told that one general rule was that if an IgA patient makes it to the two year mark, they will make it to five. The IgG people tend to get 10/15/20 year remissions. For the first year or so, I decided not to think about that. After a very unsuccessful first go around with chemo and the very bitter disappointment of failure, I decided that I would set all expectations low. But as the twenty four month mark approached I began to get excited. At first, I was quiet about it. I kept it to myself. But then I began to mention it to close friends. I remember the smile on my face when I revealed my hopes to My Marine and he said "I know, I remember, I'm waiting too." LOL! Nothing gets by him.
As February, 2013 approached and my hopes grew I went to my January, 2013 appointment with Karen and Dr. Miller. I was being tested every three months. It was during that appointment that Dr. Miller said that they could see a protein and he wanted me to start coming in every other month.
Buuuuttttttt.......I didn't want to hear that. Soooooo.......I didn't.
This is not the first time I have completely and successfully blocked bad news. When my older son Tom was born, we were told he had a heart murmur and it would need to be watched. And apparently it was remarked on during pediatrician visits for the first thirty months. But when I was told in the early spring of 1984 that he would need an operation to fix it, I was completely blindsided. I swore it was a shock. Tom's father my ex was flabbergasted.
So when February 10th rolled around, I celebrated it! I had a celebratory lunch with my parents. I was all smiles.
Because I have mad blocking skillz!!
Then I went to the March appointment where Dr. Miller assured me that while my cancer was back and my levels were rising......we would hold off on treatment. We would wait and see.
I nodded and smiled.......inside my head I am screaming "WTF???? What is he talking about? I made two years! I am going to get five. He said he saw "A" protein, not "MY" protein!"
But after a few days, I pulled my head out of my ass and called for some numbers. In the three months between October, 2012 and January, 2013, my cancer reappeared and my IgA level increased by 41 points. In the two months between January, 2013 and March 2013 the IgA level again increased by 41 points. However, these increases only brought me to 262 and normal levels are 50 to 350, so technically speaking, I was not out of remission. But realistically speaking, at that clip, I would sail right out of remission shortly.
Ok, I am going to stop here for now. I am tired. When I am being honest, I will admit that my fatigue levels are indeed rising. But I will come back for Part 2- "What I Am Doing About This". Or some such.
Well, shit.
ReplyDeleteI am not ready to admit it's back either, Maggie. It's just not right, or fair. You were RIGHT THERE. And all of the suffering through the transplant? sigh.
((hugs)) girl. Love you.
Kick it's ass, Mags.
ReplyDeleteWell, damn. Believe it or not, I had been waiting too.... hoping that it wouldn't be the other shoe dropping on the floor, rather you putting it on and dancing the happy dance.
ReplyDeleteThis being said, my Boston Maggie manages to dance the happy dance (or a version of to make everyone else happy) regardless of the news or situation. And that makes you awesome and inspiring. And it makes me honored to know you.
So today, I'll dance one just for you. I'll even eat a pastry and dance... and wish I were there to do it with you. XO K
You kerb-stompped into FUBAR that mean beastie once. The second time around, it is the beastie who should be concerned, not you, Boston Mag.
ReplyDelete