My 100 day post-transplant appointment at Emory was last month. So much happened to me physically in those 100 days, but looking back it doesn’t seem like it has been that long since my 17 day vacation at Hotel Emory. For the most expensive vacation I’m ever likely to take, I really think the food could have been better. I realize it was all inclusive and you just can’t hold the food to a high standard, but it was really awful in these particular accommodations. At least my room had the best view on the floor.
Since I last wrote, I made it through my first several rounds of maintenance therapy. The people around me only narrowly survived my first two rounds, however. I was receiving two shots of Velcade per week, was on more than twice the dose of Revlimid I took in the spring, and I was taking twice as many steroids. Conclusions from those two cycles of chemo: steroids are the devil and ‘roid rage is real. Steroids make me feel like I’m floating outside of my body, watching someone I have no control over. I knew I was acting completely crazy but there was absolutely nothing I could do to change it. Also, I couldn’t stop eating so I gained about 15lbs over that six week period. Yay. Thankfully, I am now down to only one shot of Velcade a week and I am off the ‘roids and the Revlimid.
My appointment at Emory went well. I received a straight answer from the doctor regarding how long I’ll have to continue maintenance therapy. The Nurse Practitioner just told me last time I was there that I’d be on maintenance until I can’t tolerate it any longer. I told the doctor I needed a real answer to my question and he told me I’d continue with maintenance for three years.
I have to say this wasn’t exactly what I wanted to hear, but it is what I have to do, so I’m trying not to dwell on it. The stressful part is not that I have to go to the doctor every week for three years. The stressful part is the fact that Velcade is a tier six drug. That’s the highest tier, which means it’s the most expensive. Proving to be consistent at every aspect of life, I not only have expensive taste in shoes, cars and food, but I have expensive taste in cancer as well.
The doctor told me a generic for Velcade should be available in a little over a year. John did some research on this, and apparently a generic has been available in the EU since 2004. Really? REALLY?! Apparently Myeloma is a $6 billion industry for drug companies. That’s a lot of money for a cancer that affects less than 1% of the population. I’ll just roll my eyes and move on because getting off on that tangent will turn this blog into a novel. I realize they need to cover cost of research, but good lord.
The doctor also said that they are coming out with a Velcade pill soon. It is currently in clinical trials and they are seeing good results with it. Hopefully they will approve the pill for maintenance therapy and I will be able to take it, should I continue on Velcade. This could save me several trips to the doctor per chemo cycle, and it would give my stomach a reprieve from these really painful shots. I’m not just being a baby, either. My stomach is torn up from these shots (I bruise as a result a lot of the time), and it hurts to wear anything on my bottom half that doesn’t have some sort of stretchy waist (this just gives me even more of an excuse to wear leggings and yoga pants constantly). But things could be so much worse. I see people every week while I’m waiting for my shot who are in much worse shape than I am, so I am grateful that I am as well as I am.
Some of my recent labs have come back slightly abnormal, though. Yesterday I went to the doctor and I have an M Spike of .1, which is a spike of monoclonal protein (these are malignant cells that we want to get rid of). The level isn’t high; as a comparison, my M Spike was .6 when I was diagnosed. However, we really want the level to be zero, so my doctor in Columbia wants me to go back to Emory this month to see if my doctor there wants to change my maintenance therapy. We may switch drugs completely or just add something to what I’m currently taking. We shall see. I’m just thankful I’m monitored closely so we can catch these things and handle them before they spiral out of control. So, back to Emory I go on the 22nd. At least I’ll get to hit up General Muir while I’m there!
One final thought…I’ve been reflecting a lot on this past year lately, and it becomes more evident every day how lucky I am to have such a supportive husband. I knew I was lucky before all of this happened, but the way I appreciate things now is so much different. I can’t imagine what life would have been like over the past year had I not been with someone as amazing as he is. I would have been dealing with cancer and a divorce. He has seen me at my absolute lowest, most unattractive points, and he still finds me beautiful through it all. He also knows how to make me laugh exactly when it’s needed to help me get through a heavy moment. John is one of the most incredible people I know and I owe a lot of my badassery (yes, that’s a made up word) to his support.