Having a bit of a rough reentry coming back from vacation. I got enough time to relax. I spent great quality time with the family. I spent time doing things that I love doing. Everything is great.
Tuesday morning I went in for my first dose of radiation. Everything was smooth. It only takes about 10 minutes. I don’t even need to get undressed – just take my shirt off. I left radiation to walk over to the treatment center for Chemo. After drawing blood I settled in my room and the nurse began the IV, when all of the sudden another nurse came running into the room saying “No, no, don’t start yet. Dr. J wants to see him before we start.”
Now that can’t be good can it?
They left the IV in my arm and took me down to the third floor to see Dr. J. When he came into the exam room he pulled up my chart and told me he was going to change my regimen.
“Why?” I asked.
“Because your numbers have jumped so significantly.”
“But they haven’t jumped significantly.” I said. “In fact, they are right in line with where they were before we started this cycle.”
“No.” He said “No, look here. You have doubled from where you were before.”
It was then I realized that he did not have the Myeloma numbers that were taken when I went to visit Dr. K at Sloan Kettering to consult about the transplant. I told him this. If you take the numbers that Sloan drew, my Myeloma numbers are slightly lower but it is really negligible with different labs. It is within the margin of error.
After about 15 minutes of trying to explain to him that he didn’t have all the information, he finally called Dr. K to have him look up the Myeloma blood work that was taken at Sloan. He said that he would release me for today but that he would be in touch to make a decision regarding my new regimen.
My timeline on this stuff:
7/22 – Blood work taken at Mt. Sinai after cycle of Velcade and Pomalyst (which did not work)
7/30 – Blood work taken at Sloan Kettering (was much higher than the 7/22 blood work from Mt. Sinai)
8/4 – Began cycle of high dose Carfilzomib and Pomalyst
8/22 – Blood work taken at Mt. Sinai (showed little to no change from blood work at Sloan)
I told him that my hip pain, although still there, has decreased and that my excruciating back pain was gone and I hadn’t even started radiation yet – so something must be working.
He was ready to admit me to Mt. Sinai and begin giving me continuous Chemo. I don’t even know what that means nor do I know for how long! I told him that I will do whatever he recommends but he needs to be playing with a full deck – with all the numbers available to him. Patients and Caregivers really need to be their own advocate for this stuff. I can’t expect that everyone at Dr. J’s office is going to follow through 100% of the time. When I tell them I had blood work drawn at Sloan Kettering I can’t expect that they are going to call Sloan and get the results. And this time … they didn’t. Someone told me last night that approximately 200,000 patients per year can end up with the wrong treatment because of “medical mistakes” and lack of proper information.
Anyway – to make a very long story short – I got an email from Dr. J’s NP which said we are staying on the same regimen of high dose Carfilzomib and Pomalyst. I was my own advocate. Gee whiz! I hope I was right!
So – the week has been tough. Luckily, I was supposed to be in Baltimore for a conference this week and when I found out that I was to have radiation every day I had to cancel that so my schedule was fairly clear and I was able to adapt to these changes easily.
Throughout my battle with Cancer, I have managed to tolerate treatments pretty well. I have kept positive, knowing all along that I would beat this. I also always knew (and know) that there will be some dark days. Lately, there have been too many of those. But the things that have sustained me and will continue to sustain me are my family and friends, my coworkers and clients and … Fantasy Football.
Last night was our fantasy football draft for the guys in Westfield where I live. I wasn’t feeling all that great. I knew it would be a late night. I knew I would have some hip pain as the night got later (and I did) but I also knew I needed my boys. I mentioned these guys in a few posts. These are my friends. These are the guys that text, email, call constantly to check in on how I am doing. And it is tough. Because Multiple Myeloma is an ongoing battle, an incurable Cancer, I am sure that people are sick of me already. When I was first diagnosed, everyone would say – “you got this” or “you are going to beat this” and other words of encouragement. Now here we are 21 months later … and I am still battling. Battling harder more recently but still battling. The novelty is gone. 21 months later and I still have Cancer.
And here’s the thing… I don’t LOOK like I have Cancer. I am not quite where I was in late June at the golf outing. In late June I was the picture of health – on the OUTSIDE. Now, just two months later, I move a little slower. I am much more deliberate in my movement. I hadn’t seen many of these guys since late June. Everyone goes their separate ways during the summer. Beach, travel, camp visits, etc.
I sat apart from everyone last night. I wanted to sit at the end of the table because I knew with the night going so late I would need to get up and stretch and walk around a bit. When I got there the ends were taken so I set up shop at the bar where I could have room to do my thing. But it was great seeing them. As I said, those guys are my sustenance. They are part of what keeps me going. We talked, we hugged, we drafted but most of all – for the first time in a long time we were all together. In one room. At a fantasy football draft. And Cancer wasn’t in the room. It wasn’t a part of the conversation.
This is the picture/poster they gave me when I went in for my transplant. It is a picture of our champion, Joe, and the rest of the guys in the league. I don’t know if those guys will EVER know how much they mean to me. It is immeasurable.