I want to thank all my friends and the outpouring of support I have received. I had a wonderful response from my last email. And I had a great quote from my friend Diana Cohen. She said “If you measure the wealth of a man by how much he is loved by others you are a millionaire. You are a lucky guy !” I always knew that and really never wanted to be in a place to have it proven but it is nice to see.
This is not going to be a fun update. Which I guess takes all the suspense of what I am going to write.
I am going to skip all the what I have been doing lately stuff and move right to the meat and potatoes.
I failed my PET scan.
Not only did it turn up cancer, but it grew and spread. I kind of knew I would still have cancer. My lymph’s grew out about 3 weeks ago. And I have had symptoms like night sweets and itching for a week or so. I was surprised by the spreadimg of the disease. It has grown in the left arm pit, moved to the lungs (still not quite sure about that), bone areas in the right shoulder, and left ribs.
So want does this all mean. Well I am in very bad place. Not many good options. Luckily there is a brand new Hodgkin’s drug that just got FDA approval in Aug. It’s called Brentuximab or SGN35. Here is the link if you are looking for some dry medical reading http://www.cancer.gov/clinicaltrials/results/summary/2010/brentuximab-Hodgkin1210 It is made by Seattle Genetics.(not sure why I put that in there) It acts different than chemo. It attack the specific cells that are thee Hodgkins.
This drug has pretty decent success for people in my situation. 80% of people had a reduction in the tumors and 35 percent having complete remission. These are good numbers considering people in my situation have an average life expectancy of just under a year. But it does not have long term stats since it has only been around for a couple of years.
The drug is really not cheap. It cost 16000 per time and they recommend 16 times. That would be rough. I am hoping Medicaid will cover it. I don’t think my insurance will. The BMT coordinator told me later today that Medicaid will cover it with a 3$ copay. I will not complain about that.
There are some other options. A stem cell transplant with someone else’s stem cells, is the next best option. The problem is the potential for Graph vs. Host. Which is where the new immune system attacks my body as a foreign disease. This is a horrific death and I am pretty sure I am not going to do this at all. There are also a ton of other complications and it would change my life completely. I would basically never be able to do the thing I love outside again. Not really a good option for me.
I can also do maintenance chemo to keep knocking down the cancer for a while. Not sure how long that can last but it is an option. and could prolong my life by a couple of years.
So my life expectancy does not look great today. This will sound sick but right now I am trying to manage my treatments and life to do my Grand Canyon in November. That would be a really nice treat if I am going to die soon. My last hurrah.
I start treatment next Tuesday in SLC. I am hoping that after this first one I can do the rest here in Moab. This first one will show how hard the side effects are and if I can maintain my semi normal lifestyle in between the treatments. From the studies it looks like the side effects are a lot less than Chemo, which is nice.
That was mostly details and my options. Now to the emotions part. How do I feel? I have been up and down for a while. I cried the whole way to SLC for the test. (because I knew the Cancer was still there) I'm pretty bummed about potentially missing out on all the great adventures that will be coming up and such.
I have started to think about a "bucket list." that is funny, starting a bucket list at 31. Hell I might even be a year or two to late also. I really want to see all my friends and far away family one last time. I also really want to do a middle fork trip in Idaho. There are are a tons of others also.
I want to take advantage of as much as possible. I was thinking about going Smitthy style. Get a sweet boat setup and start running rivers for the rest of my life. Rouge, Cal Salmon, Cataract, Arkansas, etc.
There are also a lot of places I have never been That I would love to see, Hawaii, Europe, Egypt, Middle fork of the Salmon. Maybe I will buy an RV and start traveling. But I like Moab too Much to leave for too long. Maybe I will just do 10 day Cataract Canyons and such. Or week long dailies. (I am not sure I will like that either.)
I am writing this quickly to get it out to everyone right off the bat. That way I don’t get flooded with texts asking questions over the next day or so. So I am not going to go into how I feel too much.
Lets just say knowing if I live 5 years I will be doing good is not a great feeling. But it does cut out a lot of the bullshit. But it is what it is and I am not overly worried about it…yet. I just hope I am not sick the whole time. That would defeat the purpose of being alive.
I feel great right now. so I jut can't believe I am dying. I hope I feel this good or even better right up to thee time I kick it. I guess we all want that.
I did not mean to say earlier that I don't want people to write and contact me. I love people emailing and texting and calling with words of encouragement. It really does uplift me.