Last month I started a series where I feature stories written by multiple myeloma survivors about their lives.
Recently one of our regular readers, named Holt, emailed me about a memorable trip he took to the Grand Canyon. Holt was kind enough to write about his experience so I can share it with all of you today:
I recently wrote Pat about a trip I took through the Grand Canyon and he suggested that I add some background information so that he could post my account. So here goes…
My Inspirational Trip Rafting Through the Grand Canyon
BACKGROUND
I was diagnosed with multiple myloma in November 2010 as the result of a routine blood test that showed low hemoglobin and reduced kidney function. I was 65 at the time. My primary care doctor sent me to a nephrologist who performed a kidney biopsy and found that my kidneys were clogged with light chains. I am one of the approximately 15% of MM patients who is a light chain secretor and consequently I have no M-spike. I went under the very capable care of Dr. Keith Stewart at Mayo Clinic in Scottsdale, AZ and started induction chemo with CyBorD (cytoxan, Velcade, and dexamethasone). The plan was to do induction and then a stem cell transplant. I responded very positively to the CyBorD. As the light chains went down my kidney function also started to recover and was nearly normal again after 2 rounds of induction.
The week before my scheduled SCT, I began to experience atrial fibrillation. It was likely the result of a leaky mitral valve (I’d had it for years but it had never caused any trouble) combined with the effects of the induction chemo. Dr. Stewart decided that it would be too risky for me to undergo the SCT with the occurrence of atrial fibrillation and instead continued the CyBorD. Despite 3 more episodes of atrial fibrillation I was able to achieve a complete response. At that point (May 2011) I collected stem cells for a future SCT and started Revlimid maintenance.
In January of this year I traveled to Cleveland Clinic for the open heart surgery necessary to correct the leaky mitral valve. Strangely, all my lab values were worse when I was tested at Cleveland (hemoglobin down, kidney function down, light chains up) and there was also blood in my urine which caused the cardiologists to send me for testing for kidney and bladder cancer! I went back home to complete the testing and everything came back negative. My lab numbers also returned to (new) normal levels. But at that point I had lost my appetite for medical adventures so the mitral valve repair remains on hold, and consequently the possibility of a SCT is also on hold. Maybe that’s a blessing?
THE GOOD STUFF
I’ve always been an avid outdoorsman, so I was delighted to participate in a remarkable raft trip down the Colorado River in the Grand Canyon at the end of May. We covered 280 river miles and ran over 200 rapids in 8 days and 7 nights on the river. Those who have been to the Canyon know that the river cuts through nearly 2 billion years of geological history and provides access to ancient ruins and magical side canyons.
This was a commercial trip on motorized rafts which provide for the easiest passage through the Canyon. There were 20 passengers on the trip with 10 of us traveling together as a group. The 10 of us had all known my friend Don who had survived multiple myeloma for 9 years but passed away this April. Don’s wife was part of the group. The trip had been planned long before Don’s death, but because of the timing it became an opportunity for us to hold a memorial service for him. We asked the trip leader and head boatman if he could take us to a suitable place for the memorial, and he led us to a beautiful, spiritual slot canyon in the depths of the Canyon. We let everyone on the trip know our plans, and to our surprise all the passengers and the 4 crew chose to be part of the ceremony. The memorial was simple with each person lighting a candle and remembering Don in his or her own words. Those who knew Don spoke first and many talked about what a warm, welcoming and open person Don had been. Then all the other passengers and crew took a turn. Even though they had never met Don, they were deeply touched by the ceremony and the sacred setting of the slot canyon.
What happened next was amazing and I would probably not believe it if I hadn’t been there. One of the “crew” was the 65-year old father of our 2 boatmen who were brothers (it was quite a family affair). When it was his turn to speak, he said that he had learned some lessons from our memories of Don and that he intended to apply them to his own life. That same day he completely transformed himself from being quiet and shy around those he didn’t know to being open and extroverted. For the rest of the trip he made it a point to talk to and get to know everyone and share his life story with us. He was a strikingly changed man after the ceremony.
How did I do on the trip? In a word, GREAT! Happily, seven days of the trip coincided with my monthly Revlimid “holiday,” so my usual side effects (fatigue, stomach problems, cramps, rash) were at a minimum. I was slower on some of the side canyon hikes than I would have been pre-MM, and I was certainly ready to climb into my sleeping bag after dinner each night, but I had no serious problems. I’ve always believed that, within reason, we can continue to pursue our passions while battling MM. And yes my doctor knew about my plans so I wasn’t going rogue…
But this isn’t a story about going down the Canyon with multiple myeloma, or really about myeloma at all. I like to think it’s a story about how one man’s life can inspire other people, even some he has never known. I take this lesson from it: Even while we are dealing with multiple myeloma, it is not our myeloma that defines us, but our basic humanity that other people will remember.
Very profound, Holt! On behalf of my readers, I would like to thank you for taking the time to share your story with us today. Please keep us updated about what you decide to do about your heart surgery and SCT.
Feel good and keep smiling! Pat
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