Northern Lights: Preparing For What May Lie Ahead
As I have related in previous columns, I am currently in a stable condition with a low level of myeloma protein in my blood. This status has allowed me to be off treatments since the beginning of the year. My multiple myeloma is closely monitored in that I get blood tests every four to six weeks. I am currently basically in a "watch and wait" situation until the time when I may have to start treatment again.
At first I was really nervous about this "watching and waiting" because it involves a lot of uncertainty. However, I have become more relaxed about it over the last couple of months, partly because my husband and I have been working diligently to be more organized and prepared for the time when I feel less well and may need to have treatment again.
For example, we have made an effort to be ahead on house and garden maintenance. We are trying to cram several months worth of home improvement projects into less time since we only have about 100 frost-free days in this area. We have had some interior and exterior painting completed, some of which we did ourselves, and are clearing out our outdoor storage areas. We have been lucky so far this summer that we both have had free time to work on our house and garden.
I also have been working on my fiber arts projects to make them more manageable. I went through all of my projects, threads, fabric, and notions and tried to rearrange them so I can remember where everything is. I have many stitching projects on frames to work on, and my goal is to finish a few of those over the next couple of months since I’m not sure how much time I will have to work on them when I start treatment again. Another advantage of completed projects is that they reduce clutter and take up less storage space because they no longer are on the frames. I am trying to finish one to two projects a month, which is a slightly faster pace than in previous years.
I have always been quite active, but ever since my multiple myeloma diagnosis, I have been taking exercise even more seriously. Being somewhat obsessive about lists, I keep track of my steps each day, week, month, and year. Right now, during this treatment-free period, I am trying to increase my stamina by walking a marathon distance, 26 miles (42 km), each week. It currently is easy to get outdoors and exercise, since it is summer time and I feel very well. I have walked over 680 miles (1,100 km) so far this year. I would like to continue on that and reach about 1,370 miles (2,200 km), which is slightly more than in previous years.
At this time, I’m also very careful about taking on new commitments since I’m not sure I would be able to follow through if and when I start treatment again.
However, since I’m feeling pretty well at the moment, I do continue activities that bring me joy. First and foremost, my husband and I spend as much time as we can with our family since we both very much enjoy being grandparents. In addition, I continue to participate and do some volunteering in the groups that are important to me (a community choir, the local needlework guild, and the local myeloma patient group). I am busy, but as I always point out, it is a “nice kind of busy.”
I’m also hoping that I can return to my choir practices in the fall. I therefore am doing vocal warm ups and singing a bit at home to help my voice stay limber.
So gradually, by working away on projects and goals, I have the feeling that I am getting caught up enough to take time off for more treatments, if necessary. Being in stable disease, if not a complete remission, has given me more time away from worry, and I am grateful for that. Our house will be more manageable, and the garden a nice oasis from the hubbub of the busy world around us, if we need to spend more time at home.
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The quotation for this month is from Michele Jennae, a contemporary American author, who said: "One thing I've found ... the road rarely rises up to meet you until you've begun walking."
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 enjoyed reading your column, Nancy. We’ve also been busy cleaning up our house and yard. Paperwork was a huge job that we managed to reduce. I relapsed and went back on treatment in November of last year. I certainly don’t have the energy I used to have. We are also aging and hope to remain in our home, so it makes sense to get organized to make the years ahead easier. Thanks for sharing these great insights, Nancy!
Dear Nancy, you sound very brave and positive as you face this uncertain period. I hope that you prepare for a relapse that stays away and you can continue to enjoy all your activities. Sending you very best wishes.
Hi Nancy - You are so fortunate to be able to take a pause from maintenance therapy. It must be nice to let your body rest and recover. You are smart to plan all these projects and get them done while you feel well. Nothing is worse than having unfinished projects and then not feeling well enough to complete them. We are truly amazed at your fitness goals. Already walked 680 miles this year! Wonderful! We are firm believers in maintaining fitness and having an exercise regimen while also dealing with multiple myeloma. I believe this philosophy has really helped my husband avoid some of the debilitating effects of myeloma treatment. He has a lot of fatigue but really tries to get out there and get things done. A few little cat naps here and there help. Thanks for sharing the walking quotation. I will have to try that out on our exercise group.
Thanks for the comments!
Thanks Susan, paperwork can just pile up! I took binders full of notes from different interests and recycled a lot of that a while ago, but it's just ongoing actually! We like our home too and are trying to make it more manageable. We focused on the outdoor areas this summer, and it looks better now. I hope that your energy levels improve though and that you are able to reduce your treatments eventually.
Marjorie, we are enjoying life even though we put more effort into getting organized than usual. The preparing for a relapse is a little surreal even though I know very well it is all too real! But anyways, hope the relapse is not for a while yet. Hope you are well too and enjoying summer.
Patty, glad you liked that quote! I had to prioritize as to what was most important to accomplish and did at least some of it. Yes, indeed I feel fortunate to have been able to take a break from treatment. My journey through cancer land was unpredictable! Currently I am off of treatment so that when I do relapse it will be at a level where I am eligible to take new drugs. Previously I was on Revlimid alone, and that was working for me, but apparently a drug such as Darzalex can keep the myeloma at bay longer (if it works). The trouble is, the start of that treatment can be quite intense, and I didn't think I would have time to do a lot of other everyday things. My crafts are still mostly unfinished though, but that is normal for me. I really like getting immersed in that world actually, and keep learning more! Right now I am working on a sampler that features hardanger in it!
Hi Nancy,
I am very thankful as I sit here that it looks like we may have narrowly escaped a direct hit here in South Florida from Hurricane Dorian after days of “watching and waiting”!
As I love reading your articles and have followed you from the very start, I thought today was a perfect opportunity to respond to the “watching and waiting” game that I am also playing with the Hurricane Dorian and my myeloma.
I was also diagnosed in 2009 at the age of 40 with smoldering Myeloma. I watched a waited very nervously for 1 year before starting a year of induction treatment. This was followed by a tandem stem cell transplant and finally a year of heavy maintenance. I then had a drug-free holiday for about 5 years. Like you, I have my blood tested every month so my oncologist would be able to see as soon as there was any M-spike. Last year my M-spike resurfaced every so slightly at 0.1 g/dL. It would then disappear for a month or two and then reappear. It followed this pattern for about 1 year and then finally in February this year it increased to 0.2, 0.3, and 0.4 as of today September.
As I do not have any of the CRAB symptoms, I am back in that “watching and waiting” period. I try and keep myself active too.
Thank you for your columns
Thank you, Michelle, for your comment. We can see Hurricane Dorian on the news and I pray that it avoids Florida and that the direct hit on the Bahamas ends quickly.
Your medical history is interesting to read too. Your initial strong treatments, including a double transplant, must have been difficult, but it's nice that you have had the time away from treatment. Maybe if you need more treatment, that will put you into another remission too. My myeloma protein level plateaued this year for a while close to 6 g/l (0.6 g/dL), but I am probably close to getting more treatment. From what I understand, I would be on treatment and then maintenance treatment indefinitely after that. But I thought that before a few years ago, before getting a secondary cancer and being taken off treatment. Just like a hurricane, myeloma can be unpredictable! Take good care of yourself!
Nancy,
Keep on keeping on!! I too am re-starting choir, later this month, and am looking forward to it. I play guitar and sing (at home only), which keeps my voice limber.
Back at you, Ron! It's nice of you to share what you are doing, and singing is a wonderful exercise for the lungs but also uplifting for the spirit! I have been involved in musical groups since about 1990, between the pipes and drums and now a choir, and as a child too. Even if I have to take some time off this winter for more intense myeloma treatments, I can practice at home, for I have lots of resources here to do so, even a piano.
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