Northern Lights: Learning About Others
It was such an awful shock to be diagnosed with multiple myeloma, and to be suffering from vertebral fractures and a high count of myeloma cells in my bone marrow 11 years ago this July, that it drove all other concerns out of my mind and that of my dear husband and caregiver, Dilip.
For quite a long time after my diagnosis, we were so taken up with the treatments and learning about the disease, the stem cell transplant, and more that the rest of the world seemed distant to us. We stayed in a bubble of concerns of our own making.
Finally, after many months, I was well enough to be around family and friends again. People were very solicitous and concerned about me and my health. I, on the other hand, continued to not worry about anything but myself.
Eventually, my fractures mostly healed, presumably with the help of the Aredia (pamidronate) I received, and the myeloma therapies I was treated with put the disease down to a very low level. I wasn’t cured, but quite well again, both psychologically and medically. I have not gotten any additional bone fractures since then, and my blood counts have been close to normal for a long time.
Despite all these developments, multiple myeloma was still my main preoccupation. Even though I was doing much better, I wanted to be involved, learn more about the disease, and stay aware of new developments. I therefore decided to volunteer in the myeloma community, locally, nationally, and virtually.
I have to admit I still worry about the disease, and my worry keeps me motivated to take the treatments I am on now.
Friends and acquaintances have been inquiring kindly about my health throughout my myeloma journey. I realized after a while, though, that they also may have had problems in their lives; it wasn’t all about me. I just didn’t hear about their problems.
I recognized that they may have avoided telling me about their problems because they may have thought that my problems with multiple myeloma outweighed theirs. For example, if someone breaks an arm falling off their bike, they may not even mention it, because they may think that they should not bother me with such a ‘minor’ incident.
However, it is nice to keep in touch with friends, and be included in the news, good and bad, of their lives. Otherwise, one can become rather isolated in the personal worries one has about myeloma.
So I started making a point of turning the conversation around so that my friends could also express themselves.
In that regard, the COVID-19 crisis has brought an interesting twist.
Because my immune system is compromised and I therefore am at a higher risk of getting COVID-19, I have been staying home a lot. I found out through conversations that many of my friends are doing the same thing, even though they are not immune compromised. So, in a way, we are all of a sudden on an even playing field. I ask about their gardens, their families, and what they are doing, and try to stay in touch with them that way.
In addition, many people are turning to videoconferencing and online chat groups for their hobbies and to distract themselves from outside events. In some situations, such as an interest group, talking about one’s illnesses is actually discouraged, since the focus is on a specific subject matter. So in those groups mostly it is not mentioned that one is being treated for cancer. I think that is healthy since we don’t want to dwell on illness.
Sometimes I get through explaining about the treatments and the list of drugs I am taking, and I can see people sort of cringe and perhaps think of me as different from an average person. That may be true, but I am used to my situation, and for the most part feel quite well, so I don’t perceive myself as different.
So I do try not to worry others around me about my treatments. I basically avoid long conversations with others about multiple myeloma and just tell people that I am doing fine as far as the myeloma treatments are concerned, and that I am dealing with the side effects of the drugs.
I also realize that it is better for me not to obsess about multiple myeloma. If I am relaxed and can focus on other tasks and responsibilities in my life, life is easier for me. I do take my medications and go for appointments, tests, and treatments as prescribed. That is usually enough to reassure me that I am doing what I can to stay healthy.
Going forward, I hope that I am a little less self-centered about my own health concerns when communicating with others. I will have opportunities to practice that now that we are allowed to visit with others again. I am really enjoying seeing my children and their families again, as long as we are healthy. My husband and I found that the grandchildren missed us, and we missed them. So I certainly want to listen to them and find out what they are thinking. And one thing I know for sure: My myeloma won’t be coming up in those conversations.
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The quotation for this month is from "Winnie the Pooh," a children's book by English author A. A. Milne (1882 – 1956): "You can't stay in your corner of the Forest waiting for others to come to you. You have to go to them sometimes."
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 .
Hi Nancy, I wanted you to know that you are one of my favorite writers in the Myeloma Beacon - I especially love all your quotes at the end of each piece. This particular one was my favorite. My husband was diagnosed in May 2011 and was never able to achieve remission. Because he was considered high risk, he opted not to have a transplant. Glad to say his condition is stable and he is doing fine. I think "other" issues are more worrisome (two spinal fusion surgeries) than the myeloma.
Thanks, again, for all your wonderful insights.
Jan Eaton
Virginia Beach, VA
Hi Nancy,
Once again, I have enjoyed reading your column. I’m glad to hear that you are stable in your myeloma journey. Being self-centered upon being diagnosed, I think, is pretty normal. I mean, one’s world comes crashing down with just hearing the words “multiple myeloma”! After we get a chance to wrap our brains around it, we can slowly relax a bit and get back to somewhat normal lifestyles. Granted, all the testing, drugs, and appointments make us stand out from our friends, but we, eventually, can let go of our many fears. Hearing about others and delving into what’s happening in their worlds makes it easier for us to feel normal.
You are right, this pandemic has put us all on the same playing field with being quarantined. I find it interesting how difficult some of my friends and family find staying home to be. I guess it’s all in one’s perspective, right? I have to admit that the thought of getting COVID-19 is terrifying to me. That, in itself, is enough to keep me quarantined and wearing a mask when I go out!
Hang in there! You are a survivor!
Patty
Thanks very much, Jan and Patty, for your nice comments! I have enjoyed writing for the Beacon also, and I believe this is my 94th column! My editor, Maike Haehle, is always helpful and kind, helping me sort out my thoughts. The quote this month reminded me of children and how wonderful it is that I reached this stage in my myeloma journey to have them in my life!
The matter of quarantine puzzles many people since an invisible virus is holding us all ransom and keeping us back from being out and about as we may have been just last summer. I think we understand that it is a serious matter, and thus have more time at home for activities. I have done a lot of needle working lately, and then gone online to virtual groups for that.
Happy Canada Day to all! It is our country's 153rd birthday.
There is so much emotional truth and wisdom in this reflective piece. I really enjoyed it.
Nancy, I'm so glad to hear that you are feeling well, 11 years out, and that you're able to put myeloma in the back seat. This gives me hope! I think it takes a while to get used to the idea of being a cancer patient, but it's difficult to process that when you're consumed with the learning curve, appointments, testing, and the like. It all takes time. And 94 columns is impressive. Happy Canada Day! Enjoy your family, stay safe, and I look forward to reading your next column.
Dear Isobel – Thanks for your compliment. I hope that, since I have written a lot for The Beacon and also edit the newsletter of my support group, my writing is gradually improving. These volunteer jobs have been helpful for me to stay involved with the disease, and also to get some perspective on it!
Dear Else – When I was first diganosed in 2009, the outlook was quite dire, and we were really worried about that! Now, even though I am still taking medications for myeloma, and maintenance for breast cancer too, I feel much more relaxed about the future. For one thing, I am very grateful to have gotten this far along! I have enjoyed reading your introductory columns and am hoping for all the best for you also! You are such an interesting writer. Stay safe and take good care of yourself too.
Thanks Nancy. I always enjoy your columns and your perspective on living with multiple myeloma. While this cancer is always present, it shouldn't define us, within ourselves or to others. I am so glad the treatments are continuing to go well for you. Take care.
Thank you, Colin, and I hope that you are doing well also!
Hi Nancy,
I have always maintained that as patients we need to put our focus on something other than multiple myeloma. My focus has been biking and music. Reacquainting myself with the guitar after 30 years, singing in my church choir, and of course cycling. COVID-19 took away the choir, as we have not practiced or sang since March. However, I have spent more time with the guitar since the outbreak, and although I had to modify my cycling, it continues. I do more solo outdoor rides and indoor virtual rides with others on my smart trainer. I have not been able to see my grandchildren as often as before, but we did have them over for a pool party on the 4th of July. I also can virtually visit with them on my tablet computer. We learn to adapt.
Hello Ron, Thanks for writing! Apart from times when I was really taken up with treatments and couldn't really concentrate on much else, I have tried to stay with other activities. I was still playing in a pipe band when diagnosed, but had to leave playing in parades. However, I still played sometimes for events. The choir went on with me, although I have missed two years. Now everyone is missing choir, since it had to be cancelled in March due to the COVID-19 problems. I am not sure if I should go back again due to low immunities. However, I took piano lessons years ago and have been playing a bit. And I like my needle and fibre arts hobby and I am doing more of that. So, as it turns out, hobbies that I took up years ago, before a retirement age, are coming in handy now! My dear step mother encouraged me to do things for myself as the children were growing up, and she was right. There is not as much value in waiting to age 65 to take up something new, since you never know what might be happening at that age!
I am not as much an exerciser as you are, but I am aiming for 4 km a day of walking and keep track of that on my fitness tracker.
I am glad you can spend time with your children and grandchildren and how nice to have a pool party on July 4th. That should always be a good celebration for you and your fellow Americans!
I can relate to your column. I was very “wrapped up in myself” nine years ago, especially during the stem cell transplant. I was really surprised when I learned that many of my friends had experienced losses and disappointments in life, medically and emotionally. It was like walking out of a fog. Other people have struggles, too, and it’s very important to be compassionate. I certainly have empathy for myeloma patients, but my friendships are because I enjoy their personalities.
Thank you for this reflective piece, Nancy. I enjoy your writing and friendship.
Dear Sue,
I am so glad I met you on my myeloma journey! The stem cell transplant also was my most intense experience with treatments, but even that was a decade ago now!
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