Wednesday, August 21, 2013

Managing side effects

While I owe my life to modern medicine and I'm incredibly grateful, side effects from those medications can be intense. In case you're new here, I was diagnosed with Multiple Myeloma in January 2012 and immediately started treatment. I was recently asked what my side effects were and how I manage them. So here goes.

My initial treatment plan (Jan-Oct 2012):
  • Six weeks of medications (so many, I can't list them all), which included thalomide, dexamethasone, and a whole host of others
  • Two rounds of "chemo in a bag", where I was given chemo drugs for four solid days, 24 hours per day
  • Two rounds of massive chemo administered through my port for about one hour (during that entire time I had to munch on ice cubes, which made me want to gag for days) prior to both transplants
  • Two stem cell transplants, which included more medications than I can ever remember
That's the very simplified version but, trust me, there's not one simple things about it. I was hospitalized for four days, spent countless hours getting blood transfusions and platelets, lost all my hair, endured sometimes daily doctor visits, and powered through mind blowing fatigue. Despite all of my treatments, I managed to take a trip across the country via Amtrak with stops in Washington, DC, New York, and Chicago, traveled to the Grand Canyon and Arizona (granted, this was for a third opinion at Mayo Clinic in Scottsdale), made serious progress on getting a divorce from my alcoholic husband that I fled from on the day I was getting scanned for tumors, moved my personal belongings from San Diego to Utah, and even managed to parent my two young daughters. Not bad, if you ask me.

But that phase is over!

My maintenance plan: (Oct 2012-Oct 2013):

I am now nearing the end of my one year of maintenance therapy. That includes taking thalomide daily, blood thinners (though now I can take a pill instead of giving myself daily injections in the stomach), dex once per week, velcade (intravenously) once per week, and Aridia (once per month). I go to clinic at least once per week and those appointments range from one to four hours. If I get a mild infection or a fever over 101, I must race to the nearest emergency room. I am still immune compromised so I can get sick often. I do my best to keep myself healthy, like washing my hands often, eating lots of immune-supporting veggies, getting lots of rest, meditating, and listening to my body.

Current side effects

My current side effects from my maintenance plan include:
  • Chemo brain
  • Fatigue
  • Feeling fuzzy
  • Racing heart/breathless
How I work through my side effects

I push myself sometimes beyond what I should. Napping doesn't always stop my side effects so I try a few different combinations. Sometimes I sleep, sometimes I just need to be horizontal and so I'll watch TV or just meditate lying down, Bikram yoga helps (though I'm often very tired afterwards!), I go on long power walks with William and that seems to stave off the fuzzy feelings (but not always). I get weekly massages, which I think has a lot to do with my not getting neuropathy. When I was in Washington, DC, I discovered that oftentimes, the more intense side effects I had often diminished if I got up and moved around. It was really strange how I figured that out. One day, I woke up feeling especially fatigued and fuzzy but we had a day of walking around in the heat. I pushed myself all day and I did pretty well, even though it was a very long day. After that, we had a full day on Amtrak and I woke up with the same exact side effects, which never went away because, I believed, I happened to be sitting. Since then, the worse my physical side effects, the more or try to push through it. Oftentimes, it is the best "cure" out there, though not always. I just be flexible.

My daily schedule

It varies and I plan around what I anticipate to be my most fatigued days. I spend a lot of time taking my girls to their activities (and I overschedule them). I work with Siena endlessly on reading (despite all of this effort, she's reading only at a mid kindergarten level and has ADD). I do laundry, and blog, meditate, and do my yoga or power walks. I also spend a lot of time at doctor's appointments. I've been lucky to have traveled a lot since I completed my initial treatment. Since then, we've been to California three times, Las Vegas four times, Europe, St George twice, Moab, Denver, Idaho, and several local overnight trips. I spend a lot of time with friends, either in person or on the phone. Personal relationships are more important to me than ever and I value and cultivate every single one of them. I cook and bake and clean. And now that the girls are back in school, I have time to hang out with my parents and also William. We are going to explore some of the hiking trails before it gets too cold. I don't read as much as I used to because my eyesight went from 20-20 to something pathetic, thanks to all my treatments. A book has to be great for me to dive in and finish it. I recently read a great novel about Catherine the Great, one of my heroines. My next book is The Shining by Stephen King. I bought that book when we were at The Stanley Hotel in Estes Park, Colorado a few months ago.

What's next?

My year of maintenance ends in late October and I'll be meeting with my oncologists, Dr K and Dr Patel, to discuss another year (or more) of maintenance therapy but it should be less intensive. I don't work now and I'm not sure when I'll go back to work. I'm definitely putting my health first and once I've determined that my mental clarity is back, I'll see. Until then, it's not even on my radar. Pushing through side effects is incredibly powerful-- I feel like I'm telling my cancer to fuck off. So, the big question on what's next? Well, that's a work in progress. I don't know but I'm enjoying the journey as strange as that sounds.