Northern Lights: Staying Grounded With My Myeloma
Last month, I watched the Juno Awards, the Canadian music awards, on TV. Broadcast from Vancouver, the show featured a live performance by Diana Krall. That alone was enough for me to watch the cermonies, for Krall is an artist I admire, both for her music and for her support of multiple myeloma patients and their families.
The Artist of the Year award was awarded posthumously to Gord Downie of band ‘The Tragically Hip.’ He passed away last year from brain cancer after a two-year battle that he played out publicly with his band. As the show went on, a lifetime achievement award was given to the group ‘The Barenaked Ladies.’ Among the members of the group who made acceptance speeches was Kevin Hearne, who thanked his fellow band members for standing by him through two cancer diagnoses.
The morning after that show, I was still mulling over the fact that so many of us have been affected by cancer. It is commonly said that every family is affected by cancer somehow. In my own case, I have had two cancers, multiple myeloma and breast cancer.
Even though I am now in a remission from both the myeloma and the breast cancer, I can’t forget entirely about problems due to the diseases. There are little things happening in my life that keep me grounded and that remind me that I am still a patient.
First and foremost, I am still taking an aromatase inhibitor due to my breast cancer diagnosis. The drug cuts back on the amount of estrogen my body produces. I am used to the drug now after having taken it for a year, and I am not experiencing as many aches and pains as I did when I first started to take it. In addition, I get checked every six months for the breast cancer and am having mammograms annually.
The multiple myeloma seems to be in a quiet phase now, for my blood work is nearly normal when I get it checked monthly. Every once in a while either the kappa-lambda ratio or the M-protein results will jump up a bit, as if to say, ‘You can’t stop worrying just yet!’ Sure enough, I do worry about any small change in my test results, even though they are not significant enough for me to be thinking of restarting treatment.
When I go to get the blood draw for my myeloma lab tests, I am reminded that I cannot have the blood drawn from my left arm. Some lymph nodes were removed there for testing during the breast cancer surgery. So the one cancer reminds me of the other cancer. And quite often the lab technicians need to draw blood from the veins in the back of one hand, which reminds me of when I had Velcade infusions into the veins in my hands back in 2009. My veins started to collapse during the time of that treatment regimen, but fortunately that doesn’t happen now.
I also have very thickened toenails, which I need to get a pedicure to trim. They have been like that ever since the high-dose chemotherapy and stem cell transplant that I had. My toes still tingle, which is a remnant of the mild neuropathy I experienced during my Velcade induction therapy back in 2009. This is so normal for me now that I don’t notice it much anymore.
Another change in myself that seems normal now is that I am shorter by almost two inches. This was due to the collapse of several vertebrae that happened just before I got the myeloma diagnosis. Although fortunately I am not in any pain now from those injuries, my physique has changed. I always need to try on clothes before I buy anything, to make sure that they are a flattering fit. So usually I don’t worry about this, but when I do think of it, it reminds me of what a vicious disease myeloma can be, and how I desperately want to stay in remission.
On a lighter note, recently I have been finishing up a quilt that I started in 2012 as a ‘quilt block of the month’ project. There was a quilting store near the cancer center that I used to drop in on after I had been at the center for appointments of one sort or another. Over time, I accumulated enough kits for monthly blocks to make three quilts. I worked on the quilts, but never quite finished any of them. So since I am now in another remission and trying to get really organized, I have been going through a lot of the quilt projects that I accumulated over time.
I took out one of the projects, called ‘Vintage China’, and finished the blocks and have been sewing it together. I noticed some errors in the stitching that I can chalk up to being rather scattered at the time. I remember that I was taking dexamethasone for some of the times when I was sewing. I also took quite a while to recover from chemo brain, and sometimes I think I never did recover completely from that. Some of the blocks were rumpled, and I feared that the quilt was ruined. But a steam pressing helped a lot, and I am able to finish this project.
I wonder now why I was so worried about starting and finishing a quilt, but it seems a shame just to abandon these projects, so I guess I will be puzzling out quilt blocks for the rest of the year. This is good for me, to work with the shapes in the blocks, and try to sew them in correctly too.
I guess I could ask the same thing about my health: What am I so worried about right now? After all, I am relatively lucky to have even survived two cancers, let alone being off treatment now for them. I suspect that given the biology of multiple myeloma, more treatments may be in my future, as much as I would like to be in denial about that. So I muddle along, trying to stay on top of work, family events, and all the things I really like to do. Behind the scenes, my husband and I are really trying to get our lives more streamlined so that no matter what happens in the future, one or the other of us could function here and keep everything running.
Even though my main worry is about myeloma, and it keeps me grounded, I realize that other people our age have suffered from strokes, heart attacks, accidents, other cancers, and the like. So it is not unreasonable for my husband and I to assess our situation and just take on what we can manage at the current time. We have so many positive things, people, and events in our lives that we want to enjoy that as much as possible. Our family has grown too, and we like to spend lots of time with the grandchildren.
What keeps you grounded?
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The quotation for this month is from Celine Dion (1968 - ), a Canadian singer, who said: "My feet are definitely more grounded than before. And I know that I'm not holding onto a dream. I'm holding onto my life."
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 .
I am also a quilter. Even through the pain of collapsed vertebrae, and the fatigue of treatment, I've managed to quilt a little most days. It helps me feel my life has not spun totally out of control. And even if I'm not making progress quickly, still I am moving in a positive direction and creating something beautiful. Thanks for a good column!
I enjoyed your column, and am struck by your attitude toward getting quilting done. I have been diagnosed with MGUS with neuropathy 18 years ago, with a mother and grandmother who both died from multiple myeloma (and they say heredity plays no role). I find myself working hard to keep up with the many projects I have accumulated because I feel I am always one check-up away from "the" diagnosis that my condition has progressed. I am impressed with the way your are handling your health issues, and am sorry you have to go through this at all. Our creativity plays an important role in our mental well being.
Thanks, LindaM and Stephanie D., for your comments.
Linda, even when I was first struggling with myeloma in 2009, I sewed quite a few small wallhangings and gave them as gifts. The motif was 'Turtles swimming in a Batik Ocean." We learned to sew at school when I was young and it stayed with me as a hobby. I belong to a needlework guild here and at our monthly meetings we have a 'show and share' where we can bring completed projects and talk about them. I find that to be very encouraging in terms of trying to finish projects.
Stephanie, it's really easy to accumulate a lot of projects, and I have a 'life time supply' of those, I am sure. Even if you do have to take treatments for myeloma, you could probably still keep up with your hobby. I hope though that the history of family myeloma does not continue on with you. 18 years seems like a long time to have MGUS, maybe it won't progress to myeloma, hope not!
Nancy, I wanted to tell you that I'm such a huge fan of Diana Krall!! I absolutely love her music and am amazed at her talent. Two years ago my husband and I went to see her in concert in Atlanta, GA, and our seats were four rows from the stage!! I was almost beside myself when we sat down. It was definitely a bucket list item and a memory I will always treasure.
I'm also a quilter. I find when I'm sewing or with my quilt groups I can forget for a bit that I have myeloma. Many of the quilts are for a women's and children's shelter so I'm feeding my creativity and doing good. I've admired your attitude as you've experienced two cancers.
Susan, I have been so impressed at how Diana Krall is talented at playing jazz piano as well as singing. I became a fan about a decade before I was diagnosed with myeloma, and it was only later that I learned that her mother had had myeloma. I am glad you got a chance to see her in concert too!
MaryEllen, It is wonderful that you can think of others and quilt for a shelter, and get your mind off of the myeloma too. I think that concentrating on the sewing is an example of ‘living in the moment.’
I was diagnosed with multiple myeloma in September 2016. I do not qualify for a stem cell transplant. I have lost 4 inches in height due to fractured vertebrae, so I can relate with the clothes buying problem. Also I am a quilter. I make quilts for my grandkids when they get married. I have made 3 quilts since my diagnosis, that is a way for me to get my mind off of myself. But I can only work when my side effects from the treatment I take daily will let me. Vision problems and brain fog. Once I get the quilt pieced together and put on the frame and the quilting starts, it gets easier because it is repetitious stitching and I don't have to think about it. I so enjoyed your column because I can relate to a lot of it.
Hi Diana, Thanks for sharing about your problems with myeloma. I am sorry to hear about the problems with the medications. I found over time that mixing separates of clothing and having tops made of knits work the best for me.
Your grandchildren are lucky to be getting an heirloom quilt you have made as wedding gifts. My grandchildren are still very young, and I have made them baby patchwork quilts and rag quilts of flannelette. I just ‘stitch in the ditch’ though, using a walking foot on the machine. I haven’t gotten into long arm quilting yet either. This large quilt I am trying to finish is a large project for me, and I am not sure how it will turn out; probably won’t be heirloom quality!
Petite sizes are the key to a shortened torso. I lost 3 inches 14 years ago. I wish you well in moving on with your recovery!
Thanks Pat, that is a good tip about petite size for clothing. I hope you are still doing well after 14 years.
Nancy, thank you for your wonderful column. It reminds me that we are the tailors of our own quilts. We may not always have perfect stitches and we may have difficult patterns to sew, but there are such beautiful bright colors and whimsical designs to enjoy if we but look up and let ourselves be warmed by them. Your positivity is a warm, joyful quilt for us all. Thank you!
Thanks, Tabitha. What a lovely way of putting a thought, 'we are all tailors of our own quilts.' I feel fortunate to be able to dabble in creative pursuits, and they do help to help me to stay positive.
I especially enjoy your articles as we have a lot in common. I am a breast cancer (left) survivor, 7 years now, and was diagnosed with multiple myeloma in October 2014. After many months of neck pain, a plasmacytoma was found on MRI and lesions were spread throughout my skeletal system. My Hgb was 8.5, but I did amazingly well on Revlimid, Velcade, dex treatments and was told the genetic profile of my myeloma was not aggressive, thus I did not need a stem cell transplant at age 73. I finished the 5 years of Arimidex (anti-estrogen) for my breast cancer, and there have been no signs of breast cancer recurrence. I also take a maintenance dose of Revlimid.
Quilting is another thing we have in common. Have been a quilter for many years, mostly by machine the last 15 years. I've slowed down since my myeloma diagnosis, my energy level is not as good and I have low back pain, but it's still a joy to complete a project.
Nancy, thank you for your articles. I hope I will continue to see them for many years!
Maddie
Thanks Maddie, and I am glad that the maintenance dosage of Revlimid is holding your myeloma in check and that the breast cancer has not recurred! Enjoy your quilting!
I also do hand embroidery. I found that when I was taking Revlimid, I would get cramps in my hands, so in that regard using the sewing machine is easier. The last two projects that I finished and was able to take to the monthly needlework guild meeting were a 'Canada150' quilt made from panels of the crests of the provinces and territories, and a wall hanging called 'Alaskan Sashiko', whichI sewed from a kit I bought in Skagway in 2012.