I'm wrapping up a Tuesday. Days and weeks and months fly by. I don't like it at all. Nor do I like green eggs and ham. I started my latest cycle of maintenance today. Revlimid, velcade, dex and medrol. Dr Berenson's mix. For some folks, my regimen is their treatment. But for me, it is maintenance. We're not looking at this mix to bring the myeloma down. Rather, we're using the mix to either keep it stable or slow the progression. For the past two years, it has done a superb job of keeping things stable. This is longer than we expected. Since perhaps April of this year, my numbers have been creeping up. We look at protein in urine, paraprotein (the nasty myeloma created protein) in urine, kappa light chains and creatinine. I do not have a m spike, a common myeloma marker. So these four listed metrics give us a sense of what the myeloma is doing. Oh, and of course, we go by how I feel.
The numbers aren't skyrocketing, but they are inching up. My maintenance is no longer doing exactly what it aims to do. But don't get me wrong, it's working but not as efficiently as before. And that's how it is with myeloma. It eventually becomes refactory, basically meaning the myeloma morphs and becomes immune to whatever drug you might be taking, Very common for this to happen in myeloma. This is the incurable part of it. Us myeloma patients are fortunate that in the past 3 years or so, we've had several new drugs in the chamber ready to blast the myeloma. I haven't used any of these new drugs. Doctors Phan and Berenson have been reminding me of this fact in recent visits. In my mind, they are preparing me for a change. And if I am being frank, at my past 2-3 visits with Berenson I was absolutely expecting him to say it's time to change. But he hasn't said it yet. He's happy with how I'm doing. He's the expert. My kidney function (creatinine) is decent, meaning the myeloma is under control. I feel ok, even climbing 10,000 foot Mt Baldy two weeks ago and 14,000 Mt Bierstadt in Colorado two months ago. Sure they totally kicked my ass, but I conquered them. This month, my proteins went down (good) while light chains went up (not good). Kind of a mixed bag. If you ask me, the regimen change is coming. But we want to sap every ounce of benefit (with time included as a benefit) from my maintenance as possible.
It's kind of an odd position. I know change is coming. Lots of questions though. When is it happening? Next month, next year, who knows. What drug will I do and what does that treatment schedule look like? Berenson has mentioned Daratumamab (more easily known as Darzalex) as the next drug. But Leslie recently asked the doc if we should have a forward looking plan. Not yet said the doctor. I guess we cross that bridge when we get to it.
Since my diagnosis five years ago, I've gotten decent at recognizing changes in my body and how/what I feel. There are a few changes that have popped up in 2016. Let's start from top:
- I've never had neuropathy, which can be painful and quality of life impacting. I take 600 mg daily of Alpha Lipoic Acid which is supposed to help. It has helped. But of late, I've noticed my hands very easily get numb. Not painful, but a tingling, I can't feel my hands kind of numb. It happens when my hands are not aimed perfectly straight from my wrists. Any angle or pressure on the hands creates the numbness. It goes away after a while, but it's becoming more pronounced. Dr Phan today suggested switching my velcade from infusion to sub q in the belly. This is supposed to help with neuropathy. We don't want the nerve damage that leads to neuropathy to become permanent. Today I stuck with infusion, but in two weeks, on day 15, I'll likely switch to the sub q and see if that helps.
-If I don't sleep in a perfect straight line, I now get various body pains. Curled up, legs bent will lead to pain. I can walk and shake it off, but it takes a few minute. I have the total old man walk. In fact, even if I sit at my desk at work or sit in a car for too long, when I stand I have aches. My legs get the brunt of pain. Ankles, feet, knees and hips. My bones are fine, we know this, It's the joints and muscles. When I think about camping out on Kilimanjaro and sitting on a plane for 19 hours, I already know that I'm going to have pain. Hello tylenol,
-For a while now, I've had fluctuating hemoglobin counts. Typically, when I'd get low, I get a procrit shot 2 or 3 weeks in a row and the counts would bounce up to near normal, with normalcy lasting 2 or 3 months. My counts don't bounce up as much any more. Procrit is becoming more of a regular weekly thing. It's administered by shot in the belly. I have not needed a transfusion in years, so the procrit is keeping me at least close to normal. Also note that I take a blood pressure medicine, not for blood pressure but to help with blood flow in the damaged kidneys and mending scar tissue. This leaves me with low blood pressure and when combined with low blood counts, I am prone to dizziness if I stand up too quickly. I haven't passed out yet. At elevation though, this certainly adds to the challenge. Climbing mountains equals elevation. Our guides and doctor on team will watch me and the other patients very closely. We're taking our time getting up the mountain to help with altitude aclimation.
-Also with the low blood count, I get generally tired more quickly. Naps on my days off are the norm. When I first started feeling sick, pre-diagnosis, I could fall sleep anywhere at any time. Even standing, leaning against a wall. I'm not there now, but I can crank out an hour nap pretty easily. Work at times can be more of a drag, what with the tired and all. When my myeloma numbers were at their best, I'd have a yucky chemo week followed by a week of feeling great. Nowadays, I have yucky chemo week followed by a week of feeling meh, so-so. This is frustrating and adds to the mental/emotional challenge. A tired body leads to tired mind, leads to a feeling of being over it.
Don't get me wrong. I'm doing good. I'm semi-lasered focused on Kilimanjaro. Very very excited for this. I'm ready now and will be ready in a few months.
If you know me, it's clear that I am lifelong almost obsessed Minnesota Vikings fan. It's been a bit of a tortured 54 years for me and the team. 1969, 1975, 1987, 1989, 2009, 2015. All were years with great hope and potential, and gut punching endings. We're close to the start of the 2016 season. The Vikings have been looking great. Expectations are high. Talk is they are super bowl contenders, and it hasn't just been me talking. Real people have been saying this. This past weekend I ordered my 2016 Vikings cap. I changed my work lanyard to the Vikings edition. I've been flapping my guns about how this is the year. Today I was wrapping things up at work getting ready to go to chemo when word (texts) came that Teddy Bridgewater, the team leader, quarterback and all around great guy, blew his knee out and will miss the entire season. Vikings fans and players and commentators on social media have been expressing heartbreak and concern. My expectations have been deflated.
Myeloma is a mental challenge, more so mental than physical at times. I keep myself positive by focusing on other things; Kilimanjaro, my upcoming road trip with Leslie and Gracie, the Vikings, my 55th birthday which is around the corner and anticipated Vegas trip, my brother is coming out in November for his birthday and sports spectating. This Vikings setback chips in to my focus. Might sound silly. A football team that I have no control over. But they're a diversion. I've been following them since the day I was born, which was two weeks after the very first game in franchise history. Kilmanjaro is another positive and another diversion and a chance to show myself I'm not done yet, while also raising money to help find a cure for myeloma. I've conquered a couple of peaks in my training. I am absolutely confident that I'll reach the summit. There are 6 patients on the Kili team, so our guides gear the climb for us to succeed. But, I know it'll be no easy feat. I'm slow, I hurt and I'm low on blood Yes, I'm doing it, but I am constantly reminded that I am no longer a spring chicken. I used to crank up hills and climbs. Now, not so much.
Tonight is an insomnia night from my dex. But I sure as hell am getting up and at em early tomorrow to go to gym. Lift some weights to keep my bones strong. Do some stairmaster to help my cardio and leg strength. I'm sticking to my program. Then I go to work. Not as enthusiastically as I could be, but I'll be there. Next week va-freaking-cation.
I really am pondering various What's Next questions. When do I switch drugs? When do I decide that I'm not spending any more time or energy at work? When do I downsize and simplify so I solely focus on my health and on leading a high quality life. Right now, it's a bit a drudge and routine, with time obnoxiously flying by. I've got February 2017 (Kilimanjaro) circled in my brain as the date for "what next" becoming "here we go, let's do it"
I know I haven't written a long, perhaps overly personal post in a while. I haven't been sharing or in a chatting about myeloma mood. Seems pointless in some respects. Other patients get this and experience this and understand. There is nothing to report, but that doesn't mean nothing is going on. Hard to explain and describe. The patient community is strong and important. We support and empathize with each other. It can be spoken or can be simply known. A head nod or "what up" between two patients means a lot. Five plus years folks. I try to give back to the myeloma and cancer community. I try to keep myself positive and in beast mode. I try to look forward and not backwards and not beat myself up over the various paths I have chosen over the years. Here I am, like it or not. I am constantly working on my self confidence and acceptance and ability to power forward and improve. I'm getting better at giving myself pep talks. Throwing all this out there in this post is a bit cathartic and a bit of a motivational exercise for myself. But definitely don't worry folks, I'm good.
The LLS has a whole host of free booklets on key support topics. Follow this link to download or order. One such booklet has to do with ...