A Northwest Lens On Myeloma: A (Treatment) Day In My Life
The alarm yanks me from my dreams and I rub my eyes to help them focus. It’s 5:15 a.m. and I need to get moving. I hate getting up this early, but the cancer center is an hour's drive away, even early on a Saturday, and my blood draw is at 7:00 a.m. I rationalize the early start knowing I want to get my treatment done and out of the way.
Even though I’m not awake enough to feel hungry, I grab a quick bowl of cereal so I can take my dexamethasone (Decadron) before leaving the house.
Before getting dressed, I put a spot of lidocaine cream on my port to allow painless access for the blood draw and IV insertion. I cover that with a patch of Press’n Seal and finish getting dressed. Note to self: Write to Glad and tell them all the new uses I’ve discovered for their product since my diagnosis.
The drive south with my wife is quiet, as usual, since we aren’t really awake. This time in the car, though, sometimes focuses our thoughts on multiple myeloma, treatment, and our future together. Maybe today we will open up about these things during the commute as we sometimes have in the past.
My current maintenance schedule gives us many opportunities for these conversations. I travel to the clinic three times a month, and my wife or another family member always accompanies me. I don’t really need any assistance, but they have committed to joining me on my myeloma journey. I feel great comfort knowing I’m not alone. I give my time to treatment to stay alive; they give their time out of love.
After we arrive, I check into the lab for my routine pre-treatment blood draw. The young woman at the counter recognizes me, smiles, and calls me by name. I enjoy the friendly greeting, but I try not to think about the fact I’ve come here frequently enough to be recognized.
When I’m called back to the nurses’ station, I unbutton my shirt and expose my bare chest, and the port, automatically without hesitation. This has become second nature, as this disease and continuous treatment have revised my previous notions of modesty. The nurse accesses my port and draws the vials of blood to be tested, to see if the maintenance treatments are keeping the myeloma at bay.
Because this is the first day of a new treatment cycle, I’ll meet again with Josh. He is the nurse practitioner primarily responsible for my care. Today, like most of the previous days I’ve come to the clinic during maintenance, I’m feeling well. My labs are stable so there isn’t a lot of new information to discuss. I still enjoy my short visit with Josh. He seems genuinely interested in helping me to preserve my normal life, beyond the clinic. He sees me, not just my diagnosis.
I don’t see my oncologist regularly at this point in my care. I’m reminded this is a good thing; it means everything is going well. I recall my conversation with him over a year ago when we decided on this course of maintenance.
Thankfully, my initial treatment and autologous stem cell transplant led me to a complete response. However, my “high-risk” cytogenetics always direct our decisions regarding treatment. My doctor described an aggressive three-year maintenance course based on recent research he had reviewed. Trusting his judgment, I started this regimen of Kyprolis (carfilzomib), Pomalyst (pomalidomide), and dexamethasone (KPD).
After Josh gives me the all clear, I head upstairs to the infusion department, where another familiar face checks me in.
When I’m called from the lobby, I’m assigned a bed in a private treatment room. The nurse takes my vitals and tells the pharmacy to prepare and deliver my medication.
Like most treatment days, I must wait nearly an hour for the Kyprolis to arrive. The actual time I’m having blood drawn, seeing a provider, or receiving medication is about an hour. The total time spent at the clinic is often close to four hours.
Kyprolis is administered by IV over approximately 30 minutes. I’m familiar with Kyprolis as it was part of my initial treatment. At full dose, it is administered on two consecutive days. As part of the maintenance plan, I receive a half dose in a single day. In both cases, the treatment occurs three times a month.
I close my eyes and let my mind drift as the medication flows into my veins. Two years ago, the first time infused cancer drugs were introduced into my body, this procedure was very foreign. Now, after nearly 25 cycles of treatment and a stem cell transplant, it has become routine. In truth, I relish the chance to rest and catch up on the sleep I lost coming in so early.
I don’t need to understand the complexities of the science and what is happening in my body. Knowing objectively that the chemicals being introduced are deadly to a healthy person, yet life-preserving for me, is enough. I still don’t feel any different as the drugs enter my body. I’m also grateful that I’ve never needed the prescribed anti-nausea medications. In the end, the medications are effective with only minor side effects.
On the drive home, though, I share with my wife that I find maintenance treatment mentally challenging. With the initial treatment and stem cell transplant, the goal was obvious: destroy the myeloma cells and rebuild my immunity and other normal body functions.
With the myeloma removed from my system, the cost-benefit analysis of continued treatment isn’t so clear. Although mild, the side effects of the medication negatively impact my life. Because there is a chance I will live just as long without maintenance, it is easy to question the decision to continue undergoing treatment. Still, I've been advised to pursue maintenance, especially since I’m at a higher risk of relapse. In the end, I act on the recommendations of my medical team and accept the costs of treatment in hopes of obtaining a prolonged remission and longer overall survival.
Today, and the next 21 days, I will take my Pomalyst capsule before I go to bed. Tonight, though, I will feel exhausted, but the dex will make sleep almost impossible. I’ll take my prescribed Ambien (zolpidem), which should help me get to sleep, but I’m still in for a restless night.
If all goes well, today will be repeated three times a month for at least the next two years. I don’t want the days to be more eventful, the labs to be different, or the news to be surprising. If I’m lucky, nothing will change. There’s something to be said for the status quo.
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Mark's Photo For The Month
This is another photo of beautiful North Twin Lake. I think it is a good example of the beauty of “sameness.” Blue and more blue with just a ripple now and then to move the surface.
Photo copyright © 2016 Mark Pouley.
Mark Pouley is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
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Nice summary, Mark. I too am high risk and had a successful stem cell transplant (stringent complete response and MRD negative) and at the recommendation of my myeloma specialist, getting Velcade every 2 weeks as a single agent, an easier path than a triplet. Having said that, my local oncologist questioned the need to continue as I am now 2.5 years past transplant, but my specialist said stay the course, which intuitively makes sense to me. I understand the questioning of maintenance, given no good empirical data yet.
I wish you the best and an uneventful path.
Thank you Mark for another great article. You help me to understand exactly what I struggle with every day – the maintenance regimen is not horrible, and still I yearn to be free of it. Although I'm not high risk, it has taken me induction, stem cell transplant, consolidation and a year and a half of maintenance to finally see a complete response. I try so hard to stick to my regular life. Full-time job (which I love), and very involved with my family life. I feel like if I can get through the next year and a half of maintenance, maybe I can get back to the original plan – work to 70, then retire, and enjoy my children and their children for the next 20 years.
They tell me the deeper the response the longer the remission. So I hide my exhaustion as best I can, suffer the indignities of gastrointestinal complications, and put up with the general unhealthiness that the Revlimid causes through a weakened immune system. I know and am grateful for all the love in my life, the science and research that are curing me. I'm grateful for all the awesome caregivers. But I sure wish I could be done with this!
Thanks again for giving me perspective. Rebecca
I'm a maintenance frequent flyer, too. My oncology office staff usually recognizes me and knows my name, if not needing to take a second or two to remember it. It's just part of the trade-off: maintenance to potentially live longer, or side-effect-free shorter life. I haven't had a transplant, so I see maintenance as pretty much a must for me.
I'm so glad your numbers are good and that you're tolerating your treatment. It surely helps when it's a marathon scenario. I wish you many years!
Blue is one of my two favorite colors, so your photograph this month is just so gorgeous as well as soothing. Thanks for all your input here.
Thank you Mark. Your description probably fits a majority of myeloma patients who are on maintenance therapy. Your routine sounds a little more challenging since you have infusions three times a month. We can certainly identify with those quiet morning rides in the car, and I know my husband enjoys catching a few extra winks as he relaxes for his infusions. Like you, he is high risk, so he knows the potential importance of maintenance therapy.
Your blue photo of the lake is fabulous. It caught my eye for several minutes.
Mark,
Thank you so much for sharing! I completed my transplant in July, I am on Revlimid maintenance for the next 2 years (10 mg). You sharing your experiences has been a good guide for me.
Thanks Mark for this very informative column. I hope that the extensive treatments you are going thru do indeed lead to a really long remission! I have had infusions with Velcade back nine years ago and do remember going to the treatment area. It was all new, confusing, and a bit scary at the time, so I think that you explaining this in detail will help new patients. Little things like using sticky Glad wrap to keep lidocaine on the skin to work best is something that is relatively new!
Good luck with everything and maybe get some good books read too during this period. It is wonderful that your wife or other family accompany you to your treatments.
Boring is good, Mark. My brother, Mark, is also battling this disease. Many many boring days for you both!
I have just started the regimen you are on, Mark. I have been at this for nearly five years now, and this is the third regimen since my autologous transplant back in March of 2014. I find the dexamethasone to be the most challenging in that it leaves me emotionally volatile. I have learned to 'hole up' while on the three-day dex trip, staying away from others as much as possible.
The routine of weekly (twice a week for me) trips to the clinic has provided me with a set of friends who I laugh and joke around with. Clinic day is fun on the surface of it. I get to visit with other patients and the nursing staff. The stay is about three hours by the time labs and all are done. A bit of reading gets done during the quiet times. Volunteers who do reflexology, light massage, and doggy visits break up the boring times. Makes the whole process relatively benign. Underlying it all is the question of "what's next" of course. That does tend to dampen things a bit. However, one deals with this one day at a time and moves on. A good article, Mark. Thanks.
Mark,
Thanks for such an interesting and detailed account of what you have to go through as part of your maintenance.
One thing that jumped out at me was when you said the following:
"Even though I’m not awake enough to feel hungry, I grab a quick bowl of cereal so I can take my dexamethasone (Decadron) before leaving the house."
I have been cautioned by our lab not to tax dex before a blood draw as it will cause a jump in some of the markers, especially the white count. I generally take mine the evening after my treatment just before bed time so I can sleep that first night.
Thank you all for the comments. I knew this would hit home for most of us.
Ron: I haven't heard that about dex. In fact, when I arrive for the infusion they always ask if I already took the dex so it was my practice to take it before I headed in. Perhaps I just made some assumptions and I should ask if I could adjust this.
Rebecca: You described my mental and physical struggle to get back to normal.
Jen: During the transplant, my wife and I always joked with the team that we strove to be the most boring patients they had.
Wes: There really is something to be said about making the best of the routine. I too recognize many people at the clinic, and it isn't the scary place it was nearly three years ago.
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