Northern Lights: Sunshine And Shadow
I feel fortunate that, as a myeloma patient, I still am able to lead a relatively normal life at this point in time. I am feeling particularly well right now since I went off of myeloma medications this past January.
My current state of health allows me to be very active and involved in my growing family. These days, a typical day of mine consists of exercising, gardening, housework, shopping, and looking after babies and toddlers (I am a grandmother of five little boys, the youngest just born in May).
My current state of health has also allowed me to stay involved with the groups that are important to me, such as a community choir and the local needlework guild. I’ve been a member of both groups for about two decades, so I have made many friends in the groups over the years. I also have been involved with our local myeloma support group since 2010.
The members of all of these groups are very supportive. In return, I try to give back to the organizations where I have received help. For example, I help to write newsletters for the choir and the support group.
In the spring, all groups I’m involved with have their annual meeting and election of officers. I have been asked several times in the past to take on certain roles on the boards of these organizations, but due to uncertainty related to my myeloma, I have declined these offers.
During these meetings, group trips and volunteer opportunities for the summer or next fall also are frequently mentioned, but I don’t offer my time for those opportunities either. Too often in past years, I have signed up for events, only to cancel out of them later. I realize that this is a hassle for the organizers of events, and a disappointment for me (and I try not to set myself up for disappointment!)
So, in a sense, I am drifting away from the groups I have enjoyed all of these years. I mostly just go to monthly meetings, or choir practices and performances.
I realize people may wonder about why I don’t take on more responsibility in the groups.
The main reason for my drifting away is that I don’t really want to tell everyone I know about my multiple myeloma. I don’t want them feeling sorry for me or even doubting that I am a cancer patient.
I have noticed in the past that once I bring ‘the cancer card’ into conversations, people look at me a little differently than before. This can be puzzling to my psyche, since of course I feel like the same person I always have been.
At the same time, I feel like if I don’t tell people about my current health status, people may think I am odd or even lazy. I have to admit that I find it difficult to know where to draw the line with disclosure about my health.
Full disclosure related to health matters probably isn’t a good idea for me because I have been a cancer patient for ten years and I think it’s just too much information to expect new acquaintances to absorb. In addition, it can get a conversation really off topic if one starts talking about health matters too much. At the same time, I recognize that some sort of explanation for why I am reticent might be useful so that people understand where I am coming from. For now, I have settled on giving just a brief reply if people ask me about my health.
I am feeling well and full of energy now, and I hope I am building up strength for future health challenges. I don’t want to get exhausted with outside activities, which wear down my energy levels. That may sound selfish, but self-preservation now may keep me going longer, compared to if I don’t look after myself.
So, in a way, I feel I am almost living a double life of both wellness and illness. It is like "sunshine and shadow" in a patchwork quilt! In the sun are the happy events of my life, while in the shadows loom my myeloma and some apprehension about the future.
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The quotation for this month is from Lailah Gifty Akita, a Ghanaian writer and the founder of a youth volunteer organization, who said: "If you focus on the sunshine in life, you will see the darkness fade."
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 can totally relate to this column, Nancy. I'm still doing "great," especially outwardly, and I'm trying to stay as involved as possible with everything I do. Still, I'm trying not to tax myself with too many outside projects and things I might have volunteered for in the past I just can't do. I try not to give too much information or use my health as "an excuse," but the reality dictates I do less.
Dear Nancy,
I was so grateful for your column! I find it quite helpful to hear from others who are dealing with multiple myeloma because it becomes relatable to us. Also, there are, for many of us, no outward signs that we have cancer. After the stem cell transplant, my energy levels are limited and the residual pain of several compression fractures and bone lesions leave me with chronic pain. This also is not visible from the outside but can certainly affect your way in the world — only relatable to others who have experienced multiple myeloma. I love this site where there are others like us who are dealing with the mental and physical aspects of multiple myeloma. After seven years of remission, I am dealing with recurrence, and this mental trip is altogether different and disturbing. Thank goodness we have others with whom we can discuss our various multiple myeloma journeys and understand we are not alone.
Thank you, Bev
Hi Nancy.
I feel the same way you do. I feel pretty good most of the time. I did fracture some discs in my back and have resulting back pain that is manageable. No pain when lying down. More pain after standing or sitting up too long. I do spend most afternoons lying down for an hour or two. It's not a bad thing to do. But it makes it hard sometimes to accomplish the things I committed to. I got myself overcommitted this year because I was feeling good. But I am looking to scale back so I can spend more time with my family.
I also have been dealing with myeloma for almost 10 years now and feel so lucky to be doing so well. I feel guilty even talking about it because I don’t look like I am sick. (Thank God.) It’s just the back pain that slows me down. I always carry a square back cushion with me, which really helps stave off the back pain. The ladies always know I have to have my cushion.
I love to read your columns. And hear how you are getting through. Thank you so much for sharing your experience with myeloma.
Marianne
Thanks for the comments, Mark, Bev, and Marianne!
Mark, I think that reality dictating that we do less than we could have attempted before the myeloma is based partly on the realization that we have to prioritize our time and energy. I think that I must get enough exercise and rest in order to stay stable with the disease. At least I am doing what I can to stay healthy!
Bev, I went through that part of my myeloma journey too, with extreme pain from fractures. I was fortunate that the pain subsided, but it took quite a long time to do that. Others I know had kyphoplasty, which might help with back compression fractures. I was also really tired after the stem cell transplant, which was in 2010. I am grateful for the medical care, and the newer medications, plus the ability to exchange views and knowledge about myeloma. The Beacon has been really helpful to me also, so I will continue to write columns!
Marianne, Good for you to be doing really well after dealing with myeloma for about 10 years. I think we can always add time onto the survival if we had myeloma for awhile and did not know that, unless one was being monitored as an MGUS or SMM patient! Sorry to hear about the chronic back pain, though; that slows a person down. I agree that spending time with family is very helpful and is a lot of the sunshine in life!
Nancy,
I identify with all that you said in this column. I particularly like the phrase “sunshine and shadows.” That seems to describe how I deal with my myeloma. Being optimistic and positive is just how I am, which would be the sunshine aspect, but in the evenings (shadow time) I find myself seeking out the Beacon to see how others are faring and if they have experienced anything with which I might be coping. So often, your column or others nail it for me! I appreciate the fact that others can put into words what I’m experiencing. These columns/thoughts often fortify me for whatever is ahead of me. I’ve been in remission since my transplant three years ago. Naturally, I worry that it won’t last, but I pray that it will. Reading your column and others all give me hope for possibly 10 years or more, too. Thanks.
Patty, thanks for your poignant comment! I am wishing you lots of sunshine and all the best for staying healthy. Hopefully your remission will last a long time!
Nancy, thank you for your wonderful column this month. It's so aptly titled: Sunshine and shadow. Living with cancer impacts your life in ways that seem impossible to describe to someone who hasn't been there.
Even people who have been touched by many types of cancer, find it difficult to understand "living" with something like myeloma, because for myeloma patients, the treatment is ongoing. It's not like some cancers where your remove a tumor, radiate it or go through a cycle of chemo and return to life as normal. That's not to say that having other types of cancer is easy - of course it isn't, and cancer is intensely stressful, regardless of what type you have.
For many myeloma patients, however, the journey is so much longer to get to the sunshine. It's induction therapy, stem cell harvest and collection, stem cell transplant, maintenance therapy, and new lines of therapy once those fail to work. In short, for many myeloma patients, there are very few "off periods" where you get back to life as "normal". This is both difficult to explain and difficult to understand.
We, your audience, understand though, Nancy, and we are so glad that you are feeling well.
I'm so glad that you are in the sun these days, and I hope that they continue a long time for you.
Cheers,
Tabitha
Thanks, Tabitha, for the very nice comment! It is definitely a long journey for many patients through the myeloma treatments. Having gone through two cancers now, I just rely on my health care providers to check me routinely for relapses. When and if that occurs, I would be back on treatments again. Glad you liked the analogy; it's a quilting pattern in the log cabin design. One half of the block is bright and the other is more shaded; very popular design. It took me quite a while to figure it out, but now I can sew that quilt block. I hope you and your dear husband have nice distractions too to turn too when you have time. Best wishes to you both!
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