Weekly labs and daily prayers
Tuesday we made our way back to St. Louis for Steven's monthly check up. I was relieved at the timing of this visit, since he had been battling nausea and vomiting the week before.
Prior to our visit the doctor had suggested eliminating the high dose Vitamin D from his daily line up of meds, as well as bumping his prednisone dosage back up to 10 mg to see if he improved.
He did.
I held on to the hope that it was either the Vitamin D that was the culprit, or a fleeting virus, because the thought of tapering the prednisone back down had me in tears. We had made it to 3mg and I thought I could see the light at the end of the tunnel.
I was wrong.
At his visit on Tuesday, when comparing the lab work from the previous week to the labs taken that day, a prior spike in his eosinophils, followed by a dip in his platelets, pointed to a flare up of Graft VS Host Disease.
The physician decided to start gradually tapering off of the prednisone (again), in the hopes that by the time we reach the 3-4mg level, Jammie's cells will have calmed down a little and Steven's stomach will be able to handle the adjustment more smoothly this time around.
*****
I took the opportunity Tuesday to ask the physician about the role that the chromosomal rearrangement played in the stem cell transplant, and if the hope was that the mutation would also be prevented by the procedure.
In short, the answer is yes.
However, the discussion lead to me leaving the office with a heaviness in my heart. You see, as I have mentioned before, with each bone marrow biopsy we are given three pieces of information. We are told whether or not there is "active disease" (cancer), how much of the marrow is donor engraphed (we pray for 100%), and if the genetic mutation, and chromosomal rearrangement, is present.
Since transplant, we have always received the best news on all three.
I knew the importance of being free of cancer, as well as the importance of being fully donor engraphed. However, although I knew that not having evidence of the chromosomal rearrangement was HUGE, I didn't know if the rearrangement was something that we should expect to see again, or if the thought was that the transplant would take care of it.
What I found out is that the study searching for the mutation is more sensitive than the study searching for the cancer. Steven could, essentially, be free of cancer, but have the rearrangement (Inversion 3) present. If that was the case, the rearrangement is basically indicating that it will be developing into cancer. It is cancer at it's earliest stage...before it is even classified as "active disease".
The hope is that Jammie's cells will recognize the foreign cells and prevent their return. Even cells that aren't fully cancer yet. It has been the purpose of the transplant all along, and I now had a greater understanding of it.
However, it was the physician's demeanor, once again, that set me on edge. In speaking with her, I could not help but pick up on the fact that she didn't seem very optimistic about the transplant doing it's job. It wasn't what she said, as much as her avoidance of saying what I wanted to hear.
She did not put her negativity into words, and I have to focus on that.
She stated that, if the mutation became evident, there were avenues to take before the transplant would be considered unsuccessful, and I have to focus on that.
And, as of today, day +142, we have had nothing but good reports, and good news...and I HAVE to focus on that.
It is a constant battle and I find my mind shifting from today, towards the future. When I look ahead, all I see is uncertainty. When I look ahead, I am consumed with fear, and "what ifs?". When I look ahead I wonder how, if I had to, would I make it on my own? What about the kids? Will we end up alone?
And all the questions bouncing around inside my mind makes me, literally, sick.
I hate the way my mind works.
I have been reminded by many, although I am already very aware, that none of us are guaranteed a future. Steven doesn't have this market cornered. My occupation alone keeps me aware of our mortality. However, I have been holding my breath since September, waiting for someone to tell me that it is all going to be ok, and that Steven's future holds no more risk than anyone else's.... and that isn't going to happen. They can't tell me that. And I am getting light headed and weary from not being able to breathe.
No one knows what the future holds. Only God. And I have to make peace with that.
*****
As I laid in bed beside Steven last night, despite my best efforts to keep my emotions in check, tears rolled down my cheeks. He gathered me up to him and comforted me and I felt guilt that I was being comforted by the one I should be comforting, and anguish at the reminder of all I had to lose. He whispered, "I thought we were past all this...", and I knew that I must have been doing a better job of hiding the anxiety that is always present than I had thought. With bravery that I don't have, and bravery I can't imagine, he reminded me of the marvels of modern medicine, and the miracle of how far he had came. He also gently reminded me that worrying didn't solve a thing and God was always in control.
And he is right. And I pray for the day that I can get "past all this..." and I can start living this life that I have been given.
*****
Steven was due to have another biopsy around the +180 mark. The doctor said two weeks wouldn't make a difference, and in order to save us a trip, they scheduled his next biopsy on the same day as our next appointment in St. Louis, in a month. Until then, we will continue with weekly labs and daily prayers.
We always appreciate your prayers as well.
Prior to our visit the doctor had suggested eliminating the high dose Vitamin D from his daily line up of meds, as well as bumping his prednisone dosage back up to 10 mg to see if he improved.
He did.
I held on to the hope that it was either the Vitamin D that was the culprit, or a fleeting virus, because the thought of tapering the prednisone back down had me in tears. We had made it to 3mg and I thought I could see the light at the end of the tunnel.
I was wrong.
At his visit on Tuesday, when comparing the lab work from the previous week to the labs taken that day, a prior spike in his eosinophils, followed by a dip in his platelets, pointed to a flare up of Graft VS Host Disease.
The physician decided to start gradually tapering off of the prednisone (again), in the hopes that by the time we reach the 3-4mg level, Jammie's cells will have calmed down a little and Steven's stomach will be able to handle the adjustment more smoothly this time around.
*****
I took the opportunity Tuesday to ask the physician about the role that the chromosomal rearrangement played in the stem cell transplant, and if the hope was that the mutation would also be prevented by the procedure.
In short, the answer is yes.
However, the discussion lead to me leaving the office with a heaviness in my heart. You see, as I have mentioned before, with each bone marrow biopsy we are given three pieces of information. We are told whether or not there is "active disease" (cancer), how much of the marrow is donor engraphed (we pray for 100%), and if the genetic mutation, and chromosomal rearrangement, is present.
Since transplant, we have always received the best news on all three.
I knew the importance of being free of cancer, as well as the importance of being fully donor engraphed. However, although I knew that not having evidence of the chromosomal rearrangement was HUGE, I didn't know if the rearrangement was something that we should expect to see again, or if the thought was that the transplant would take care of it.
What I found out is that the study searching for the mutation is more sensitive than the study searching for the cancer. Steven could, essentially, be free of cancer, but have the rearrangement (Inversion 3) present. If that was the case, the rearrangement is basically indicating that it will be developing into cancer. It is cancer at it's earliest stage...before it is even classified as "active disease".
The hope is that Jammie's cells will recognize the foreign cells and prevent their return. Even cells that aren't fully cancer yet. It has been the purpose of the transplant all along, and I now had a greater understanding of it.
However, it was the physician's demeanor, once again, that set me on edge. In speaking with her, I could not help but pick up on the fact that she didn't seem very optimistic about the transplant doing it's job. It wasn't what she said, as much as her avoidance of saying what I wanted to hear.
She did not put her negativity into words, and I have to focus on that.
She stated that, if the mutation became evident, there were avenues to take before the transplant would be considered unsuccessful, and I have to focus on that.
And, as of today, day +142, we have had nothing but good reports, and good news...and I HAVE to focus on that.
It is a constant battle and I find my mind shifting from today, towards the future. When I look ahead, all I see is uncertainty. When I look ahead, I am consumed with fear, and "what ifs?". When I look ahead I wonder how, if I had to, would I make it on my own? What about the kids? Will we end up alone?
And all the questions bouncing around inside my mind makes me, literally, sick.
I hate the way my mind works.
I have been reminded by many, although I am already very aware, that none of us are guaranteed a future. Steven doesn't have this market cornered. My occupation alone keeps me aware of our mortality. However, I have been holding my breath since September, waiting for someone to tell me that it is all going to be ok, and that Steven's future holds no more risk than anyone else's.... and that isn't going to happen. They can't tell me that. And I am getting light headed and weary from not being able to breathe.
No one knows what the future holds. Only God. And I have to make peace with that.
*****
As I laid in bed beside Steven last night, despite my best efforts to keep my emotions in check, tears rolled down my cheeks. He gathered me up to him and comforted me and I felt guilt that I was being comforted by the one I should be comforting, and anguish at the reminder of all I had to lose. He whispered, "I thought we were past all this...", and I knew that I must have been doing a better job of hiding the anxiety that is always present than I had thought. With bravery that I don't have, and bravery I can't imagine, he reminded me of the marvels of modern medicine, and the miracle of how far he had came. He also gently reminded me that worrying didn't solve a thing and God was always in control.
And he is right. And I pray for the day that I can get "past all this..." and I can start living this life that I have been given.
*****
Steven was due to have another biopsy around the +180 mark. The doctor said two weeks wouldn't make a difference, and in order to save us a trip, they scheduled his next biopsy on the same day as our next appointment in St. Louis, in a month. Until then, we will continue with weekly labs and daily prayers.
We always appreciate your prayers as well.
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