Northern Lights: How My Husband Helps Me Deal With My Multiple Myeloma
Late last month, a sudden cold snap swept down from the Arctic and caused temperatures here to plunge to almost 30 degrees Fahrenheit (15 degrees Celsius) lower than normal. From a nice warm autumn, with lovely golden leaves and even some flowers still in bloom, a heavy snowfall blanketed the land and caused a sparkly landscape. The problem was that it was really cold. We scrambled to find our parkas, mitts, hats, and boots.
We had winter tires put on one of our vehicles, and my husband Dilip got out the snow blower we bought a couple of years ago. ecause of the injuries I sustained many years ago due to myeloma, I am not supposed to lift heavy items, so I didn’t help to lift tires on rims or clear the winter walks.
This recent incident reminded me of the many other things Dilip does for me to make my life with multiple myeloma easier, especially now with the raging Covid-19 epidemic. In our area, the number of Covid-19 cases is now higher than it was in May.
Since my current treatment of Darzalex (daratumumab), Revlimid (lenalidomide), and dexamethasone causes me to be immune compromised, I have been even more cautious about going out now that the epidemic is raging. I wear a mask in public and talk to friends outdoors from a safe distance. Dilip now does all our grocery shopping. He takes advantage of the early-morning “seniors hour” to lower his risk of exposure to the virus. He still works as a physician at a stroke rehabilitation unit, but is very careful to avoid getting this virus.
Dilip is also very considerate about helping me with the side effects of the drugs I take. The current treatment has proven to be very effective in treating my myeloma; I am getting close to a remission again, it seems. However, the dexamethasone may cause what I would describe as confusion, so I am not too efficient for a couple of days a week. He drives me places, and also is good at any sort of computer or technical work, where I tend to make mistakes.
In addition, the Revlimid can cause me to have gastrointestinal issues, especially towards the end of the 21-day treatment cycle. Even though I take Olestyr (Questran, cholestyramine for oral suspension), a bile acid inhibitor, and at times also Imodium (loperamide) to manage the issues, it can mean that I don’t feel like going out (such as going for a walk or seeing our grandchildren) at the same time that Dilip does, or that I am slower to get ready in the morning. He is very understanding, and we accommodate to our differences in schedules.
My dear spouse also reminds me to take my medications, which now are quite a few since I’m currently also on maintenance therapy for breast cancer. Even though I keep a chart of medications to take, I need to be reminded sometimes because I noticed that I have become a little more forgetful over the years. Occasionally I would completely forget to take my medications if he didn’t remind me.
The fourth week of my treatment cycle, which I call ‘treatment week,’ is a little hectic for both of us. On Monday I take blood tests, Tuesday I have an appointment with the oncologist, and on Wednesday I get the Darzalex infusion at the treatment center. Dilip takes me to all the appointments. Due to the Covid-19 pandemic, he does not always come into the cancer center with me, but it still takes a chunk out of his day to just shuttle me back and forth.
As you may know by now, I have an extensive hobby of needle and fiber arts. I have an unending supply of projects, it seems, and I am always working away on a few of them simultaneously in my spare time. These projects provide me with peace of mind and give me a sense of accomplishment. Dilip is supportive of my hobby, which in turn is a blessing to me. If it makes me happy, he is happy.
At the same time, I recognize that I am feeling a lot better than at some previous times in my ‘myeloma journey.’ I therefore try to remember that he can get tired too and make more of an effort to help him out more also. For example, I have been trying to de-clutter our home more lately since simplicity is helpful for efficiency. If things overall are running smoothly in our household, we will have more time for the activities that we enjoy.
In addition, I try to give Dilip space to live his own life, since he is not a cancer patient. He is so sympathetic that he can get too caught up in my problems sometimes.
We have been together for almost 46 years now, and I don’t know how I would cope without him. We reminisce about all of the wonderful times we have had together. We try to skip over times that were not so good, such as the medical problems during the myeloma decade. But even the last decade has brought us much joy, since our family has expanded to having five grandchildren and two wonderful sons-in-law. We work together as a team to be grandparents, and are known as ‘Nana and Tata.’ We could not think of a nicer lifestyle.
I am really glad to be in a lifestyle where I am appreciated even though I am coping with cancer treatments. I certainly appreciate the other kind people in my life, especially my husband. I really don’t know how I could manage half as well without him helping me.
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The quotation for this month is from Scott Adams (1960 – ), the creator of the Dilbert comic strip, who said: "Remember there’s no such thing as a small act of kindness. Every act creates a ripple with no logical end."
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 .
This is a great column, Nancy, and a reminder to let our caregivers know how much they are appreciated!
Good for you! I always enjoy your columns. I'm currently off all treatment except for a blood thinner, but I understand how difficult the 21-day Revlimid cycle can be. My oncologist has always been very flexible, and we found that a 14/7 or even 14/14 cycle made things much easier. We discontinued maintenance treatment last February because my M-spike was stable and I was having frequent neutropenic fevers. So far so good, but I know there will more treatment cycles in the future. I really appreciate your sharing and your comments in the forum.
Thanks for the comments Carol and Barbara. Being a patient can be difficult, but my husband makes it a lot easier for me.
Sorry to hear about the neutropenic fevers, Barbara. I have been off and on treatments. I assume that now I will be on treatment until at least this regimen no longer works for me, but I really have no way of knowing that, and so far the treatment regimen is working well. That is why I want to stay on it. I cannot forget how terrible it was when I was newly diagnosed at Stage 3, with vertebral fractures and a high protein burden in the bone marrow.
Best wishes, and Happy Thanksgiving to my American friends too!
Thanks for that reminder of how important spouses are for us. When I was first diagnosed in 2005, my husband did everything. While I was in the hospital for my stem cell transplant, he came everyday even though it was winter and a 50-minute drive one way. Thru my relapses, he has been there to take me to doctor appointments. When I started Velcade back in 2015 though, after my first injection that he drove me to, I drove myself as he was on the road for his job a lot. Then the tables reversed when in late 2018 he was also diagnosed with a blood cancer, myelodysplastic syndromes (MDS). So then I was now the caregiver. He had an allogeneic stem cell transplant, which I'm sure most of you know is much more difficult, as is the recovery.
Now I am about to start tretment again in January. How will it go with both of us? Who knows? But we shall be there for one another as we have been for 50 years.
All the best to you and Dilip.
Thanks Christina for this heartfelt comment. I am wishing you and your husband all the best as you go through these two blood cancers together. I hope that the allogenic transplant went well for him. I have not had Velcade by injection, but I suppose it is easier than having it by infusion, as I did. Maybe that also causes less of neuropathy too. To have each other to rely on is the best way, and congratulations on being together for 50 years!
Thank you, Nancy, for another wonderful column. Your Dilip sounds like a real gem. I, too, don’t know what I would do without my husband David’s support and care. He has been a rock for me. He does way more than he needs to as I am fully capable of doing most things. When I was diagnosed with multiple myeloma, we both felt helpless. I’ve come to realize that he needs to do some of this stuff. He can’t fix my myeloma, but by doing above and beyond what I need, he feels as though he’s doing something. So, most of the time, I just bite my tongue and let him do whatever he is doing: vacuuming, mopping the kitchen floor, cleaning toilets, etc. He feels needed, and truthfully, cleaning toilets has never been high on my list of chores of favorite jobs!
We make a good team and are about to celebrate 45 years together. My multiple myeloma is just a blip on the radar screen of life.
Take care and stay safe!
Hello Nancy, I am always happy to read your articles, because I also live in Canada (southern Ontario). So I have been following your treatment journey since my transplant 8 years ago. I loved the way you wrote about your husband Dilip, and how supportive he is. We are so blessed to have husbands journeying with us through our treatments, etc. It has reminded me to acknowledge more often all that my husband Steve does for me. Shopping, cooking, and cleaning our cars.
I have now relapsed into a biological relapse after 8 years in remission. My oncologist said that maybe treatment in late winter or spring next year; it's watchful waiting still.
I know that I will be going on the same 3 medications as you. Also a blood thinner because I had a pulmonary embolus, during my transplant, so its helpful reading about your journey. I remember reading your article when you started on the 3 medications regimen. I have just turned 75 years, and they tell me, I am too old to have a second transplant, as it would be too toxic for me!
Keep safe, there in Calgary.
Bye for now,
Diana.
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