- Yesterday I wrapped up cycle 19 of maintenance. Rev, dex, velcade.
- Cycle 19 was delayed about a month because I had back to back illnesses. The fear is always pneumonia, so we did chest xrays, delayed chemo and added a couple of inhalers and antibiotics to the mix. Everything is clear.
- While sick, my myeloma numbers jumped up enough to worry us. We were basically a flip of the coin away from changing my chemo regimen. Consensus among me, Leslie, Phan and Berenson was to stick with maintenance. Follow up laps showed my numbers heading back down. Labs this week will be very telling.
- I finally feel perfect after two months of being sick.
- I do myeloma labs later this week, see Berenson May 9.
- I'm working out and training hard. I weigh about 190, need to get to 180 by summer to be in beast mode for serious Kilimanjaro training.
- I've raised over $3,000 for the Kilimanjaro climb. There are some real generous folks out there. The minimum goal is $10,000, but I'd love to blaze past that number. Here is the link if you're interested in reading about the climb or would like to donate. http://support.themmrf.org/site/TR/EnduranceEvents/EnduranceEvents?px=1607203&pg=personal&fr_id=2330
- If you prefer writing checks, you can send these to me and follow these instructions: Checks should be made out to MMRF. Be sure to include the name of the event and the team member name on the check so that your donation will be recorded correctly. (for example: Matt Goldman. 2017 Kilimanjaro). Please note that all donors who pay by check will always receive a thank you letter documenting the tax deductible contribution for any donation over $25. My address is Matt Goldman 2137 N Studebaker Rd, Long Beach, CA 90815
- Unfortunately I have surgery scheduled May 17. This is a repeat of surgery I had in summer 2014. That was the most painful and horrible experience in my five years of being a patient. My challenged immune system means that shit, that has been quiet and dormant in my system for years or decades, has a chance to flourish. Thus I get viral warts in my lower region that require surgical removal. They are not nearly as bad as they were in 2014, so we (I) am hoping for less pain and a speedier recovery.
- Once I recover from the surgery, Kilimanjaro training is on. No fucking around!
- I cut beef and pork from my diet about a year ago or so. It has to do with both health and animal cruelty. I've always loved animals, but that love never translated to what I ate. In the past few years, I just can't imagine eating animals. After reading about how chickens are treated an abused, chicken is now out of my diet. Today is day 1.
- The challenge is that my kidneys are still jacked, so I need to watch what I eat. Beans, nuts and soy are basically off limits. So that limits a bit where I can get my daily protein. A friend of my mom mentioned satin, a plant based protein, that we have to research. I need foods low in potassium and phosphorus.
- I'm increasing my water intake. I got a bit lax. Water intake is super important for flushing those kidneys and keeping the creatinine down.
- May 2 is my five year date from my diagnosis. In the words of Joe Biden "That's a big fucking deal". I've thought a lot about life and death. Five years is serving as my spring board to embracing life. I can't dilly dally. Must be a doer.
- Also, please, I don't mind people asking how I am doing or even for details. Depending on who you are, you may get the stock answer "I'm ok" answer. But if you want more detail, go ahead and ask. The myeloma shit is a freaking challenge 24/7. But I'm ok with all of it.
- Also along the lines of asking me how I am doing, I don't need sorrys. As I said, I've reached an agreement point with the cancer. I ignore it. It ignores me.
- Also, and here is where it gets to a tricky gray area. I also don't want a complete lack of acknowledgement. Texts and emails saying hi and checking in are always appreciated.
- Meanwhile life goes on. I still work. Last month, Leslie's dad was in the hospital. He's good now. Recently my Uncle Jan had a heart attack and quintuple bypass. He's at home recovering and doing well. Life is a lot. But we're doing it.
Wednesday, April 27, 2016
It's been a little bit since I gave my update. In concise bullet format, here you go:
I'll admit it, I'm feeling good right now. I've been on darzalex and pomalyst for about 2 and a half years. I just got my latest...