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Northern Lights: Physical Changes During My Myeloma Journey

By: Nancy Shamanna; Published: July 26, 2017 @ 9:37 am | Comments Disabled

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 [1].

If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .


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