Northern Lights: Physical Changes During My Myeloma Journey
In mid-July, I went hiking with my husband and a visiting cousin from Los Angeles. We decided to hike to Parker Ridge, in Banff National Park, even though it is a 187-mile (300 km) drive from Calgary. We hadn't hiked this path since 2008, when we were driving from Jasper National Park to Calgary, along with my mother.
There were several reasons why it had taken us so long to return after a nine-year gap, apart from the distance from home. Last year was bad for bears on the trails, and in 2013, flooding ravaged the mountain parks and river valleys. Five years ago, we had a summer wedding of one of our daughters, and lots has gone on in our family life. But mostly, it was due to my health that we avoided this hike.
The hike, although short at 1.9 miles (3 km) each way, is steep. A path, which switchbacks across a mountain face, climbs steeply through stunted trees and alpine wildflowers, onto scree above the tree line. At the summit, at an elevation of 7,500 feet (2,286 m), there is a view up a valley where the 'tongue' of the Saskatchewan Glacier comes down from the Columbia Icefield. This place is so special to us, for we are at the apex of North America it seems. From the icefields, meltwater flows into rivers going to the west, north, and east. It is on the continental divide.
We arrived at our starting point around 2 p.m. and found the parking lot to be overflowing with vehicles. I felt reassured since if many people are on a trail there is less likelihood of encountering bears. Both black bears and grizzlies frequent the mountain parks.
I walked at my own slow pace, and stopped to sip water, take pictures, and catch my breath as we climbed upwards. Upon reaching the summit, after about an hour, I was gasping since the air was much thinner than what I am used to in Calgary, which is at 3,600 feet (1,097 meters). I surreptitiously swallowed a Tylenol (acetaminophen / paracetamol) pill along with water, since I knew I would be stiff and sore after the hike.
As we looked out over the inspiring vista, we noticed that the glacier seemed thinner and the meltwater lake at the base of it was more surrounded by mud and stone. This hardly surprised us, for we know that the Columbia Icefield is receding. We were really happy to have returned here again, though, and I was pleased too that I could still do this hike.
Thinking back to 2008, I feel like I have been through a journey that was more difficult than hiking. But apart from natural aging over the course of almost a decade, I think I am still a lot the same.
However, there have been some changes along the way since my multiple myeloma diagnosis, some of which were permanent, and some temporary.
The first change involved physical injuries. A persistent low back pain and painful ribs gave way to spontaneous fractures in July of 2009. Although over time my fractures healed, and I am no longer in the awful pain of that summer, I still get aches and pains relating to the fractures.
I also am almost two inches shorter than I was before the injuries. It was very startling to me to suddenly realize that I had changed height. To be the same weight and yet shorter means a change in physique also. As a result, I had to change the clothes that I wear.
A few months before my myeloma diagnosis, my feet had become numb when standing a lot, such as on risers during a choir concert. After taking induction therapy with Velcade (bortezomib) given by infusion, neuropathy (tingling) also affected my feet. This had persisted since then, but after being off treatment, the neuropathy has lessened in my feet.
Going through the stem cell transplant process also caused some temporary and permanent changes. I lost my hair, which was probably the most obvious change. It grew back to a temporary wavy state, and then reverted to how my hair was previously, but it seems thicker now. I was weakened by the procedure and vulnerable to infection. Thankfully I did get back to a new normal. I lost some of my sense of taste and smell at that time. I didn't get back all of my sense of smell though. "Chemo brain" hit me quite hard, and I had a struggle getting back to thinking more normally.
After the stem cell transplant, I didn't have too many changes. Actually, after a year of being on low-dose Revlimid, I enjoyed three and a half years being away from treatment. But in 2014, a serological relapse occurred. My doctor, my husband, and I decided to hit the myeloma hard with a strong treatment of 25 mg Revlimid (lenalidomide) 21 days out of 28, and 20 mg of dexamethasone (Decadron) weekly.
I certainly did encounter physical changes on that regimen. The Revlimid could cause abdominal cramping and gastrointestinal problems, and the dex caused puffiness, along with moon face. My weight, which is now back to where it was in 2009, fluctuated up more than 10 pounds, and then back down again. I still have to work hard to stay the same, let alone lose weight. Dex also caused some issues with my mental state, which meant that each week I had to work around that for two to three days after taking it. Sleeplessness, hyper activity, and lack of focus sometimes were the new norm.
But life goes on, and a year ago last July I was being tested for a second cancer. By September, my oncologist suggested that I discontinue treatments for myeloma, since I would have enough on my hands dealing with the treatment for early-stage breast cancer. However, I still am getting regular blood tests related to my multiple myeloma.
I have stayed off the myeloma treatments since last fall, so I have not had to deal the side effects of myeloma treatments. That has been such a gift this year – the gift of more time to get caught up, enjoy life, and be in remission (from two cancers now).
Being on a hike through the beautiful mountains and feeling much the same as I did nine years ago was terrific, and I hope that will continue for a long time.
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The quotation for this month is from Robert W. Service (1864 - 1958), a British-Canadian poet and writer, who said: "There’s a land - oh, it beckons and beckons, And I want to go back - and I will."
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Nancy,
Thanks for sharing that story. Not much in the way of scenic hiking in North Texas - too hot anyway.
All of us long-term myeloma patients can draw parallels to the changes you describe. We all have to learn to adjust and cope.
Thanks Ron, I know that you also have had to cope with a lot over your myeloma journey, and hope everything is going better for you now. Have you been doing lots of cycling? There are lots of recreational walking/cycling pathways in our area. The season is short here for the mountain parks, so we were lucky to get out on the Parker Ridge hike when we did.
A beautifully written column! I am glad that you are able to take breaks from treatments. I was diagnosed in 2013 with late-stage multiple myeloma and was lucky to have lived. I too lost height, eight inches in fact! My spine pretty much collapsed. Despite that, I am still ambulatory, though much slower in doing things of course. And I still spend time on our family farm doing beekeeping and little odd jobs that need doing.
Those hikes sound great! I hope you keep on doing them! And keep on writing too! I enjoy it!
Wes
Thanks for sharing your journey, Nancy!
I am celebrating 10 years of surviving this darn disease this week with lots of of ups and downs, broken bones, 3 different clinical trials, and experiencing almost the entire menu of myeloma cocktails without any success. Last year about this time I was selected for the new CAR T-cell clinical trial at the National Institute of Health. I am proud to say that after 2 months of really tough treatments and hospitalization, my multiple myeloma has been at zero for almost one year. Life has gotten back almost to normal with golf, hiking, and even a salmon fishing trip to Kodiak, Alaska.
I only share this to let all of my fellow readers that there is much hope. Keep pushing it forward and never give up!
May Peace be with you,
Bob Gobrecht
Colorado Springs
Hi Nancy,
Nice column. Thanks for sharing.
I have neuropathy in my feet as well. Not really bad. But the weirdest thing is that as soon as I step into a department store, my feet really feel electric. I can walk around on cement and other hard surfaces without much of a problem. But department and grocery stores really get my feets' attention.
Take care fellow soldier!
Hi Nancy. I'm from Los Angeles and spent the first week in July in the beautiful Canadian Rockies with my husband and son. I have been "smoldering" since 2009 with no myeloma treatment yet but various (possibly unrelated) symptoms and constant fears of imminent progression, and I was grateful to be able to spend the week hiking and enjoying the spectacular scenery with my family. Unfortunately, I twisted my ankle on the way down a mountain near Jasper in the middle of our trip and spent the rest of the week in a boot, but that was a relatively minor "bump in the road" that did not completely prevent me from appreciating the rest of the trip. I hope to be able to continue to enjoy travel and the outdoors for years to come notwithstanding any other obstacles that the multiple myeloma and treatments may put in my way. It gives me hope to see how well you are doing.
Thanks for the nice comments!
Wes, sounds like you had a harrowing experience at diagnosis, and glad to hear you are doing better now. We used to have a neighbour who kept bees in their urban back yard. This year, after the hives were not set up, I noticed fewer bees here, compared to previously. Bee keeping is important work!
Congrats, Bob, on your 10-year anniversary since diagnosis. Good to know that after trying all kinds of treatments, you and your doctors found one that worked. Many people seem to think that car-T cell therapy will be the way of the future.
Stann, does your foot neuropathy increase in department stores because you are a 'power shopper'? At least if you were shopping for shoes you would get the most comfortable ones for your feet. Keep on keeping on!
Jason, So nice to hear that you enjoyed a hiking trip to the Rockies. Sorry to hear you twisted your ankle though. The scree is very movable. I was wishing I had remembered to bring a walking stick coming down from my recent hike, since it is more difficult to hike down a slope than to climb up. Hope you continue to do well with the smoldering myeloma.
My complaining about my feet in department stores does create skepticism. It is not my way of getting out of shopping - haha. I used to have to leave the store, or just sit and wait, but now I just walk around on the electric floors (my little secret from the other shoppers).
It's going to be 8 years for me next month. I feel sorry for that guy who, 8 years ago, walked across the hot parking lot, clutching his medical records, towards the sign that said 'Oncology Clinic'. It's funny how we usually just adapt. Not many options, I guess.
Hi Stann, I don't quite understand the reference to electric floors, but hope you are still doing well!
Nancy, it's a beautiful quote, and it's beautiful to see you enjoying life again! Thank you for sharing it with us. Best wishes for lots of good days to come!
Thank you so much, Tabitha! I am indeed fortunate to be in some kind of 'lull' from health problems right now! The quote is from one of the the most famous of Canadian poets. Robert Service, born in England and died in France, but lived for a time in Dawson City, Yukon, a frenetic centre for the Gold Rush. He wrote 'Songs of a Sourdough', from which some of his most famous poetry came. Another famous author who spent time in the Yukon was Jack London. He wrote 'The Call of the Wild' and 'White Fang'. There is a bronze statue to Jack London in Whitehorse, YT. We saw it when we were in Whitehorse. I can see how both of these authors were enchanted by the north, having spent a bit of time there too. The Yukon River is very lovely, a green colour, cold and rushing to the sea.
You write beautifully indeed, Nancy. And I can't help admiring your spirit; you have two cancers to contend with and yet you can enjoy the beauty of a national park. You are a strong person, and may that strength continue to serve you well indefinitely.
I too have had to contend with some similar physical changes. In my case, four vertebral fractures left me at 5'9" (1.75 m), down from 6' 1" (1.85 m). In addition, these fractures compressed my abdominal area to the point where it looks like I'm sporting an inner tube around my midsection. I am also a member of the moon face club, thanks to all the dex over the years.
But on my good days, I can still appreciate a beautiful sunrise or sunset, as well as spending time with friends.
Just living is something to be grateful for. And in that sense, Nancy, you set an example for all of us.
Thanks, Robert, for your kind comments. I am usually just focusing on my daily life and trying to stay healthy too. You are brave to contend with the changes you had to suffer through, because I know from experience that those fractures are accompanied by a lot of pain. Also it is really disconcerting to lose height only to gain inches around the middle! That is why it is good to exercise as much as possible and try to get clothes that suit a person as they are now. Have you tried aqua fit type exercises? They don't put stress on the frame but are refreshing and can burn calories too.
But it is only in the last 20 years or so that we have had treatments to halt or slow the progression of this awful disease, and for that I am grateful. If we can get treatments that help us that way, then we can focus on the other changes. I hope that medical science and science research continues to make progress, and that it is accessible to all patients.
Dear Nancy, I read your column late in the season, and yet it remains so timely for me. First of all, I am glad you are still of the Revlimid and can enjoy your remission from breast cancer. I love the description of the hike with the wildflower. I am about to hike 2 miles to a hut with elevation climb for a woman's retreat. Your column gave me hope. I will use my hiking poles and just go slow.
I had my first fracture in T11 without any fall. It is healing and the back pain is much, much less. I love the comments about losing height. I have lost 2 inches and now am 5 ft. The description of our thicker middle from other survivors certainly rings a bell. Yet here we are still alive, and enjoying wildflowers with a hike.
Dear Maureen, I am so sorry to hear that you had a fracture. I looked up my X-ray report from 2009 and the fractures were in L1, L2 and L3, plus I had many lesions, but here I am also, enjoying life very much! Do you also take a bisphosphonate? I lost height from 5'4" to about 5'2".
Enjoy the hike. I suspect that the elevation I went to, at over 7000 ft., would seem normal to you, since you already live at high elevation. Yes, take the walking poles and lots of water too! It has been too smoky here from all of the wildfires in B.C. to see far off views, and hope that it isn't like that where you are. I got some nice pics from my cell phone camera on the hike. Will you be there for the solar eclipse on Monday?
Am now out in the garden doing pruning and garden tidy up. My peonies all bloomed really well this year and I thought of you when they did. Take good care of yourself! I really like reading your inspiring columns too.