Northern Lights: My Myeloma Resolutions For 2016
Happy New Year to all! I am so hoping that all of us have a good year.
I am a bit compulsive about making lists, and I work from lists on a daily, weekly, and monthly basis. This is the time of year, however, when I put together a very special list: my New Year’s resolutions!
The focus of my New Year’s resolutions has been shifting over the years, especially since my multiple myeloma diagnosis more than six years ago (this January actually marks the sixth anniversary of my autologous stem cell transplant).
Of course, I still make ‘regular’ resolutions, such as explore more of our world, read more, sing more, do more artistic crafts. The list goes on ...! You could also call this list a “bucket list for a soon-to-be senior.”
However, ever since my myeloma diagnosis, I make resolutions related to myeloma.
This year, I want to keep exercising, and have the time to do this for about an hour each day, or even a little more on some days. Thankfully, I usually have quite a bit of leeway over my schedule, so that I can get out and walk, swim, go to the gym, or put on my snowshoes in wintery weather almost every day of the week. Staying fit may help to ward off other health problems too.
I want to make an extra effort to stay hydrated by drinking lots of water (or tea, coffee, and juice in moderation). This may help to reduce cramps I get sometimes from the Revlimid (lenalidomide) I’m currently taking. It also helps me to sing better. You might not think that singing well has anything to do with fighting myeloma, but being well enough to sing is actually a sign of good health. You simply cannot sing with upper respiratory infections! So, in order to sing in my choir, I need to avoid getting colds and flus. In the dry winter, when many people are crowded indoors, this may be easier said than done, but to me it is a goal to try to achieve.
I want to manage my time carefully, which means that sometimes I will have to say ‘No thanks’ to certain meetings, causes, or events. I know now from experience that too many obligations exhaust me and cause me to have stress. When I am really stressed, all the side effects I experience from the drugs seem to flare up at once! Who needs to have stomach upsets, cramps, tiredness, and dexamethasone (Decadron)-induced nervousness and hyperactivity at once? Not me. I also need to consider that my family has to live with me if I get out of sorts or am not feeling well due to taking on too much.
Taking care of routine medical matters is another continued resolution of mine. I will continue to have an annual check-up with my family physician, who patiently listens to my concerns and orders appropriate tests. I will keep my monthly appointments with my oncologist, and take my daily meds. I will continue to take a written list of questions to my appointments.
My dental health is important to me, so I will continue get in for a routine check-up and cleaning twice a year, and have any necessary dental work. I will also check to see if I am due for any vaccinations, such as a renewal of the pneumonia vaccine, and the annual flu shot. I will continue to keep track of all of my medical lab results, and pore over them obsessively once a month! I will continue to call the cancer center to talk with the ‘triage nurse’ if I have problems I cannot solve. Recently I called and asked about severe leg cramps, and she was very helpful with advice.
I will continue to educate myself about myeloma research and try to keep up with the latest news on research and drug approvals in Canada and internationally. I have gradually learned over the years that there are differences in availability of myeloma treatments between Canada and other countries. Every time someone I know loses their life to this disease, I can’t help but wonder if a new drug would have helped them to still be with us. This is a strong motivator for me to be active as a volunteer in the myeloma world, and to become more computer savvy so I can better spread news and awareness.
All in all, in order to be an effective, yet happy and content person, I will try to enjoy each and every day of 2016!
Did you make any New Year’s resolutions?
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The quotation for this month is from by Patrick Geddes (1854 - 1932), a Scottish biologist, sociologist, geographer, philanthropist and pioneering town planner, who said: "Think global, act local."
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 .
Related Articles:
- Northern Lights: My History With Myeloma And How Things Have Changed Since My Diagnosis
- Northern Lights: My First Six Weeks On Darzalex, Revlimid, And Dexamethasone
- Northern Lights: Coping With Treatment Again
- Northern Lights: Celebrating A Decade Since Diagnosis
- Northern Lights: Preparing For What May Lie Ahead
Hi, I also had leg cramps so bad from Revlimid, I had to start taking it every other day for 21 days instead of everyday. The pain was too much. So now I'm looking into more natural healing things like essiac and chaga tea. I take extra vitamin C and zinc twice a day. I'm hoping it works for me.
I once was driving my mother on a major highway and my right foot and lower leg cramped up so bad I had to slow down and get off of highway with my left foot. I could not drive with the right foot. Magnesium supplements help me, too, to keep the cramps at a minimum.
Glad you are well!
Sorry to hear about the severe cramps in your legs and foot, Elizabeth! I have also had cramps in my hands and feet, especially to do with doing handicrafts, such as knitting and stitching, and singing (standing in one place for what seems to be a long time). Last season, for our main concert, we were up on risers practising for hours and I think that is why I got leg cramps. I hadn't had those before, but the triage nurse went over my 'electrolyte' results with me. There was nothing wrong there so she suggested eating a banana daily (for potassium), and I went back to taking multivitamins, Vitamin D and also trying to drink lots of water. That is the sort of thing that makes me realize that I don't have any choice but to slow down sometimes. When you take the Revlimid every other day, in effect that halves the dosage. Hope that works for you!
Revlimid can cause low potassium, and also low levels of other electrolytes. Supplementing with potassium, magnesium, etc has eliminated the cramping issues for me. See your doctor, have the blood tests done, then get on a regimen that keeps the levels above the cramping point. I will be on Revlimid for 3 years in another couple of cycles. Paying attention to the electrolytes is necessary and also varies person to person.
Take care.
Thanks Eric, sounds like good advice!
Nancy, another great and timely article. My resolutions echo yours and seem essential for all of us myeloma patients. Keep writing.
I agree with Eric that Elizabeth should see her doctor for blood levels and advice on dosage to prevent leg cramps. It's good that we pay attention to electrolytes.
Maureen
Thanks Maureen, I think you were and still are a great nurse at heart! Can't tell you how much I appreciate the input of the oncology nurses. My hematological oncologist also reviews all my (minor) problems too, but the nurses are very knowledgeable and have more time to chat. I have gotten to know them over the years now. With the strength of drugs I am taking (25 mg Revlimid /20 mg dex weekly), it doesn't surprise me that there are some side effects. However, I have a nice life outside of that, so have to try to figure out ways to work around any problems, and the medical staff help me out (actually, that also includes the pharmacists at the cancer clinic, who I also talk with!). It is a team effort, and really helpful!
Nancy:
Good to hear you are " racing out the gates" in 2016. Keep going!
Liz:
A couple Tums (magnesium) and a couple of 99 mg potassium supplements helped me.
Good luck.
To all who have leg, ankle, hand cramps – An elixir that really works: vinegar, honey, and water. I carry a small bottle in my purse, in the car, and in my swim bag. Don't know why it works, but it does within a minute!
Thanks, Rneb and Suzanne, for sharing your remedies for leg, ankle, and hand cramps. I get all of those types of cramps too, so can also try them, even if my electrolyte levels are normal. (I still like to know what the potassium and magnesium levels are though.)
Why honey and vinegar and water works
1. Vitamins And Minerals. The most common nutrients found in honey are Vitamin B6, niacin, thiamine, pantothenic acid, and riboflavin. Amounts will vary according to the floral type of the honey. Honey also contains minerals such as copper, calcium, iron, manganese, magnesium, potassium, phosphorus, sodium, and zinc.
2. Dehydration can also cause cramping, so water is excellent choice
3. Vinegar (from Runners Connect website) - a roundabout way, investigating the “pickle juice cure” leads to two surprising conclusions:
First, it works very well! You can expect a shot of pickle juice to decrease the length of a muscle cramp by almost half.
Second, because of how quickly the pickle juice acts, this result provides more evidence that muscle cramps are caused by a malfunction of the nervous system, a glitch that leaves a muscle unit (usually the calves in runners) stuck in an “on” position.
If you’ve had major cramping problems during your workouts or races, it might be worth giving pickle juice a try.
I'm interested in this "magic elixir" against cramps too. What are the proportions for the mix?
Nancy thank you for sharing your experiences. I am presently in complete remission, having been diagnosed two years ago. I have been treated with dex, Velcade, and Revlimid and continue the same presently, although slightly less often. I too had suffered from very severe leg and foot cramps unbearable at times. After trying many different treatments for them, I was prescribed quinine pills about six months ago by my doctor, which thankfully completely stopped the cramping. Although they are not covered by my medical plan and are quite expensive, it is so worth it for the relief of pain. You might want to research it. Hopefully you might find it helpful.
Thanks, Jane, for another idea on how to treat severe cramps due to being on treatment for multiple myeloma! Good to hear that your myeloma is in remission. I have only suffered really severe cramping once so far, due to over doing it during choir season (I think), where I needed to take pain meds. I couldn't even walk! Yikes! Having a few remedies to try may help in the future, even quinine, a prescription drug. I think that all the comments so far have been very helpful, since the cramps seem to be a side effect experienced by many patients.
Nancy, I liked your list of resolutions. Your point about singing was very interesting. I have been toying with the idea of taking singing lessons, although I suspect I probably won't end up getting around to it. In my case though, I am far from being able to sing in a choir: I would just like to be able to make a reasonable noise!
Thanks Trevor, glad you liked my myeloma NYR's. I think that if you are interested in singing, taking a few lessons is a good way to start. If you can hum a tune, you could probably join a choir. Men are GOLD in a choir, usually far outnumbered by the sopranos and altos. I am so glad to be singing, and it is good for one's posture and breathing. I took a year out when I was injured and having my induction chemo and autologous stem cell transplant (ASCT), but was able to rejoin again. Have been in my choir for about 15 years now!
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