Hello my friends,
This is a happy and a rough update.
Not quite sure where to start.
I will just go in timeline order.
After my last update. I had an interesting week. Mostly dealing with the government shutdown and it’s effect on our town. I was even quoted in the Salt Lake Tribune: http://www.sltrib.com/sltrib/news/56990957-78/parks-national-utah-park.html.csp?page=1
The big event for me was getting sick on Saturday. Sunday, I had a solid cough with a little green. This scared me a lot. Knowing if this was bad they would kick me off the study.
By Tuesday the cough had not gone away. I called the clinic to see what I should do. They told me to go to the ER.
I spent the next 3 hours there. They ran me through a bunch of tests. In the end they decided I was fine and it was just a minor infection.
The next day I went to SLC with my buddy Larry to get my once a month CT scan. And treatment.
The scan went fine. (as can be for something that makes me feel like I peed my pants)
We also went to a very nice restaurant in downtown SlC called “the copper onion.” Very good food. My little shout out for this week. Dr. H recommend another restaurant for next time…so stay tuned for that. (I am sure you read this to get my opinion on restaurants in SLC)
The next morning Larry and meet up with another friend Ali went with me to the get the drug at the huntsman.
Dr. Halwani: “I have news you are really really going to like!”
Me: “oh, I am I cancer free?”
Dr. H: “Pretty Much!”
I have what is called a complete response. Complete response??
That is fully a bullshit medical/drug company term.
For the past week I have been trying to figure out what that means. At first I thought this meant I was cancer free. I am not cancer free. I am very close. (which means nothing.) It is a drug company term for this drug works on you.
After rereading the CT scan report, I have realized that there is only one tumor they can see. It is 14mm by 8mm. Dr. H said anything under 15mm is consider complete response. I guess clinical doctors do not deal in remissions or something like that.
This is good news…I guess.
I had a concern that this drug would work too well. And then my next decisionwould be more forced on me more quickly.
I was right.
I have to make an official decision on to do the Allogeneic bone marrow transplant.
I can stay on the drug for up to 4 months more. That gives me a little time Iguess.
Here is what I have to choose from:
To do the Allogeneic transplant:
This process would be taking someone else’s stems cells. In my case it would be my brother as the donor. He is what they call a half match. Which is pretty new process. Normally they only transplant full matches. But some new studies have shown half matches are doing well in Hodgkin’s patients.
The BMT team would destroy my immune system with some kind of Chemo. Then implant (similar to a blood transfusion) Obe’s stem cells in my body. This would make me have a new immune system.
The advantage of this is that the new immune system would recognize the cancer as bad and attack it.
The issue is that the new immune system would also not recognize my organs and such. Therefore attacking me, they call this graft v. host. To help keep this down I would have to take immune suppressants. For the rest of my life.
I would be in the hospital pretty often, especially in the first year. I would have to change my life style, drastically. The sun would be a major issue. Places with lots of people would be an issue. Rafting would be very unlikely.
And that is if it is successful. And to make it even better…It might not even work. They give it a 40-50% chance. Though those might have been the stats with doing the BMT when the cancer first came back. (I can not always remember the numbers. There a lot of them)
Obviously those life changes are hard to think about. I might not even be able to accomplish them, I do not think I can be trusted to take pills every day.
On the other side.
To Do Nothing:
If I do nothing it is a much larger chance the cancer will come back. I kind of feel like it is gambling. But with my life.
So the decision is….
I hiked up to my one of my favorite spots in Moab to write this update hoping it would help me make a decision. Maybe by the time I get finished writing this update I had will have an answer to send you all.
I have nothing. I wish my dog would be more helpful instead of barking at sticks that are too deep for her.
I planned on making this decision quickly and then I would not have to “worry about” any more. I also have a lot of things to do if I decide to do the BMT. Work, house, and more things to deal with before I am potentially unavailable for months/years.
But the more and more I think about it the less and less I want to make this decision.
To do the life altering/maybe saving treatment and to live…kind of.
To do nothing and be looking over my shoulder forever. And forever could be very very short. But be able to…”live” in that time.
So I guess this is a “happy” update. But I am not overly excited about it.
I will update everyone once I really come to a final decision.