Northern Lights: Being A Myeloma Patient Is A Part-Time Job
Lately I was considering just how time consuming it is for me to be a myeloma patient. Since I have been back on treatments since October of 2014, I have noticed that I now need more time to deal with myeloma.
Although I am really trying to live a normal life and not let the fact that I am taking Revlimid (lenalidomide) and dexamethasone (Decadron) get in my way, I have to admit that I am slowed down by the treatments.
I have to rest more because the Revlimid makes me tired. At the same time, I take sleeping pills a couple of nights a week to counteract the hyperactivity caused by the dexamethasone. I also need to take into account the effect that Revlimid has on my digestive system.
As a result, my lifestyle has been altered, and I have to take the meds and their side effects into account when planning my week. For example, I try to get my more detail-oriented work, where I really need good concentration, done in the ‘non-dex’ portion of the week, because I have noticed that I am in a sort of altered state of mind, and make more mistakes, when I’m on dex.
Then there are blood tests to be taken, appointments to go to, and medications to obtain.
I go in for blood testing a day ahead of my monthly appointment because I need to have recent blood results that show that I am healthy enough to have my Revlimid renewed.
Sometimes, if the lab is really busy, I have to wait for almost an hour to get the vials of blood drawn. Even though I take a book to read or my knitting with me to pass the time, the entire process feels time consuming to me.
When I go back to the cancer center for my monthly check up, there is usually also a wait there. Add to that the need to find parking, or to have a long walk to reach the center, and half a day may have passed before I get home again.
Since I will not get the results of my free light chain and monoclonal protein tests until a couple of days later, I need to call the cancer center and talk with a nurse about those tests, which takes extra time.
When all is cleared for me to continue with the treatments (as it has been so far), a visit to the cancer center pharmacy is in order to refill the prescriptions. I once again have to wait while the prescriptions are being filled.
But, even though all of the above waits for blood tests, appointments, and the pharmacy are time consuming, I feel that it is a very small price to pay for all of the help I am getting to monitor and treat my myeloma. I have been getting excellent care for the last six years!
In an effort to improve my overall health, I try to exercise and eat healthy every day, which also takes up quite a bit of time. I usually exercise 45 minutes or more a day, and my husband and I prepare as many home-cooked meals as possible.
Another aspect of being a patient for me is that I want to study the latest developments in the field of myeloma research and treatments. You just never know when you might need to switch treatments, try a clinical trial, or understand some aspects of this disease. I try to read and learn a little more every week, and the Myeloma Beacon has been really helpful in that regard. I also really appreciate the opportunity to write a monthly column here, and preparing the column takes a few hours each month (but it is time well spent!).
I also enjoy taking part in the activities of my local support group. I have met many other patients and caregivers over the last five years, and we have worked together on projects such as organizing meetings and events. These projects can all be quite time consuming, and I have to try to manage my time so that I don’t get too tired and have enough time for other activities. Working in a group is good, since the work is divided up among different committees, which I try to keep up with.
As I have learned more about myeloma and its treatments, I realized that in Canada not all of the treatments are available that are on the market elsewhere. This has led me into trying to understand our quite complicated system of drug approvals and funding, especially for my province. This is a really interesting topic, and I have learned that writing letters to the government is probably the best thing I can do for advocacy, along with working for my support group.
So, all in all, being a myeloma patient has become a part-time job for me.
Has having myeloma, or being the caregiver for a myeloma patient, become a job for you, too?
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The quotation for this month is from Benjamin Franklin (1705 - 1790), one of the Founding Fathers of the United States and renowned polymath, who said: “One today is worth two tomorrows; never leave that till tomorrow which you can do today.”
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 .
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Nancy,
That was a great piece! Yes myeloma is a job. I have been on continuous treatment for 6 years. Even though my maintenance is now down to a Velcade shot and 16 mg of oral dex once every two weeks, it is still something I have to prepare for. I try and schedule my shots for late afternoons on Wednesdays. Like you, they must test my blood to make sure I can get the shot. Fortunately the infusion center has its own lab and they can run the test in about 30 minutes. So I leave the office at 2:30, get my blood drawn at 3, and then generally get my shot around 3:30- 4:00.
However, once a month I get IVIG infusions, which eat up a few hours. On those days, I have to take PTV from work for a ½ day as it normally eats up a morning. Once every 3 months I have my quarterly check up with my oncologist and also get an infusion of Aredia. That chews up an entire day. A few days prior to the appointment, I have blood drawn in the late afternoon so that when I see my oncologist he has all of the test results so we can discuss them and determine if we should stay the course or alter treatment.
I try and have my shots and dex on Wednesdays so that I can ride my bike that evening, before the dex effects hit and so that the effects wear off by Saturday, when I do a long hard ride. The dex normally gives my some insomnia on Thursday night. Thursday at work, I am like a whirling dervish and am firing off e mails late into the evening. Friday is a mixed bag, I am productive the first half of the day, then tired and fatigued the second half. I think we all have to try and plan around the treatment schedules. Fortunately, I have an understanding employer who cuts me a lot of slack.
MM is a large part of my life. It forces me to alter my life to fit its needs. It in essence puts demand on me that I must be subservient to. I, like you, am a contributor to the Beacon Forums and find myself drawn to it every day. Like you, I want to keep up with the new developments. I also like the idea of being able to connect with people with the same issues. It is a community. So, even though MM is not running my life, my life revolves around it. So it is like a job, but even more – a lifestyle
Ron
Thanks, Ron, for sharing how your week and month works also, with appointments and treatments and side effects too! I suppose this IS sort of a lifestyle – hadn't thought of it that way! The Beacon does draw many of us patients, and of course caregivers, together for similar reasons.
The main problem with MM is it imposes perpetual tiredness. Getting up and moving seems a stupendous task . The wait at the labs and to see the specialists add to the agony. I wrote to a senior Hindu monk asking for advice and he wrote back – TAKE ONE DAY AT A TIME. That is what I try and do.
Best wishes. Sesha
Namaste Sesha ... that is a good mantra, to take one day at a time. I think that since we as patients get our blood work checked so frequently, at least we do know if we are anemic. That could be a cause of extreme fatigue, and is one of the potential problems with MM also. That would be a medical problem requiring treatment. However, if that were not the case, could you try some walking or yoga or other gentle exercise to help you feel a bit more energized?
I totally agree. This is my fifth year of MM. I took an early retirement from work about 4 years ago. With the meds, labs, cooking healthy, it is at least a part time job. I walk at least 2-3 miles with my dog about 5 days week. I'm currently taking 5 of dex weekly, but I still don't sleep for 2 nights, so I usually take Xanax 2 nights a week. I enjoy the week off of Revlimid becuz I get a little more energetic. This summer I've become a volunteer in the community; planting pollinator friendly plants around my township. It has been good for me. I did not have the energy last year, so I'm so glad I can do what I can
Well said. Thank you very much for sharing your helpful perspective. The need for extra rest is my biggest challenge. I've become much more organized about planning projects and activities around my good-energy times of day, and avoiding pushing myself too hard. It's a continual learning process. I'm now in my 7th year, currently on Revlimid maintenance after two treatment rounds.
Nancy,
Taking this journey with MM has changed me in more ways than one. I seem to look at things in a different way. I try to enjoy each day more than I ever did before. I had to take an early retirement due to my line of work and the chemicals that I would be working around.
I am also taking Revlimid and dexamethasone (also Velcade). I have found that taking Revlimid makes me a little sleepy also, so I take that at night around 8 or 9. After about a half hour or so, I am ready for bed. It actually helps me sleep. I do take dex once per week and it has been a challenge to find the right time to take it so I am not up all night.
So far, I have been taking it in the morning around 9 am. It seems to start hitting me after a few hours and I usually ride my bike on those days, which for me seems to burn up some of that energy. My dex is now a maintenance dose which is only 20 mg once per week, and the Revlimid is 15 mg 21x7. (It was 40 mg dex and 25 mg Revlimid.)
As far as labs go, my wife works at our local hospital in lab registration, which helps. I am usually the first one there. It opens at 7 am so I get there at 6:45 and wait till they open. My oncologist has me go in twice per month for labs. Each time, he has me get the labs around two or three days before my visit with him so he has all the tests ready for me. Some tests are sent out and at times those can take more than a few days.
It can get to be a challenge making sure that I take all my drugs when I should. Weekly Velcade at the oncologist, daily Revlimid, once per week dex, vitamins, and also Caltrate. Then there's the Zometa once per month. My oncologist offers free nutrition classes which I will start this month also.
George
Thanks for your comments!
Elizabeth, your exercise routine sounds great! I walk outdoors too. The volunteer work at a community garden would be nice too...I volunteer with writing a newsletter for my choir too, which isn't related at all to myeloma. Our own garden is large and I try to keep up with the perennials, pruning, watering, having pots of annuals....it's a good way to chat with the neighbours, being outdoors. June is a busy month in the garden, and it's great to spend time gardening! (I just have to avoid doing any heavy tasks.)
Cheryl, after 7 years, you must be very good at arranging your time around the demands that being a patient puts on you! One can never be too organized!
George, you have some helpful advice about scheduling when to take meds, going to the lab for tests, etc. Our lab here opens at 7:30 and sometimes I get there that early! I was getting my labs done a few days ahead of my app't, when I was in a period of time not on treatments, but now I have to go in the day before or the day of the app't. This is because, for Revlimid, they need to know that I am not neutropenic, or that my CBC (complete blood counts) are normal, before I can have the month's supply of it. That's why I can't find out the results of the SFLC or Monoclonal tests at the app't. It is nice that your wife is working at the lab, for you can see her more often too!
Yes, you said it well -- arranging days around the sleepy times -- I can't go without a midday nap, fall asleep mid evening because of the Revlimid, and all those other little pills because of side effects, and trying to be careful when to take them so there is no interference. With treatment 2x week for 3 weeks, then a week off, I look forward to "cleaning" out my body during that week. No complaints because I am still here after nearly 7 years (in Oct. dx). Suzanne Gay
Thanks Suzanne, for your insights , and good for you managing so well for 7 years also!
I found taking the dex at night before bed was very beneficial. (I take dex once per week, and Revlimid for 21 days then a week off.) The dex does not seem to interfere with my sleep, as it did when I took it in the morning. This way I do not have sleepless nights.
Take care
Hello, Ms. Shamanna, from the East Coast. Since my husband's diagnosis in September 2014, we do find we have a new part time job. Some days it seems to be full time. Bill is 89 days old today, having had his autologous transplant this past March 11th. We are anxiously awaiting the DAY 100 meeting to see where we are at. Decisions to be made about when / if / what maintenance will be started.
Living on the Maine border, we are accustomed to travelling to the States frequently. The full time job now seems to be finding a company that will provide travel insurance. Our private plan through my husband's retirement tells us they will not cover him, as so many things could be linked to the MM. We also approached CAA and Blue Cross, and we were not given encouraging answers. Perhaps when Bill is a little "older" and more stable, we will have better luck.
I have found the Myeloma Beacon to be a great source of information and especially enjoy reading a column written by a fellow Canadian.
Hello,
I go tomorrow to the hematologist for a follow up. My primary doctor referred me there because he stated that I have 2 protein plates that are high (0.20 and 0.54 - M proteins). Needless to say I am terrified. I am a single parent, 43 year old mother of three small girls 2,5 & 7. I pray that it doesn't mean anything. I pray that this is a false alarm as I did not fast with my first blood test. I went to the doctor because my ankle and feet had swollen and I was under a lot of stress. My BP has shot up to 160/100. Never had it been that high. I went to the doctor at the end of day and then they did the blood test. The nurse asked me before I took the test if I had eaten and I told her I has eaten a sandwich earlier, but that was it. That test came back and the doctor sent me to be tested again and had a fecal test done. The fecal was done but, like I said, the protein levels were high. So that is why I say I hope it was just because I didn't fast before the test originally.
Please pray for me and congrats TO ALL OF YOU SURVIVORS!!!
Thanks for the comments!
Eric, I also take the dex at night, but with trazadone, which helps me to sleep. I think that there is a lot of variation as to how people respond to drugs. Best wishes to you also!
Nadine, I hope that your husband's 100 day checkup after the stem cell transplant shows good results! I know what you mean about travelling out of Canada, since as a 'pre existing condition' one must be careful about the myeloma. With my health insurance, if I am on the same medications for one year, then I would be covered (I think!). Luckily Canada is just beautiful in the summer ... I am glad that you enjoy reading my column, for that is really encouraging!
Nichole, your post is a bit confusing to me, since you haven't given values for the proteins, and I hadn't heard of fasting before protein tests. I have to fast before 'glucose blood tests', which test for blood sugar, but that isn't for myeloma tests. Could you please post your concerns over to the forum, where many knowledgeable people may be able to help you to sort this out? I hope that it isn't myeloma, especially since you are a single mother of three young children. If it were to be, you need to have the best minds helping you. Good luck to you and best wishes to your family.
Dear Nichole, I am 65 with MM for two years, under control with Velcade so far, and many hopeful options if it wanes in controlling the disease. I can give you some very helpful advice that helped me to live stress free after the original shock of diagnosis. You don't know your diagnosis, so calm down and don't put yourself through hell imagining the worst. When you begin thinking these thoughts take a good minute to recognize what you are doing, stress can only make things worse. We cannot change the facts of reality through worry, but we can learn to control our minds. You might miss a beautiful moment of joy with your children thinking this way. Look into some of the wonderful teachings of Thich Nhat Hanh, a Buddhist monk who has written so much about finding happiness each day, and joy even in the trial of illness, if you are indeed diagnosed as having a disease. I especially used his mindful meditation guide and walking meditation guide every day to cope with an autologous transplant and days of anxiety over the future. I have grandchildren the age of your children and I want to be a good example and a source of extra love and support for them for a long time. You will find loving support for you in so many ways and places if you find yourself in need, and work on training your mind to be a haven of positive thoughts. Be open and people will help you, you are not alone.
Look for peace and love and it will find you and your family. So many people are working so hard to find cures, and your youth is such a positive factor in your favor. I wish you well. P.
I was diagnosed with POEMS syndrome and myeloma in 2005. The doctors could not agree on a final diagnosis. I have had two stem cell transplants (seven years apart). My last transplant was 2 and a half years ago. I am hopeful that I will have some time before the disease pops up again. I married the love of my life one year ago. I am finally happy, so I have a lot of incentive to stick around! I wish everyone here the best. You are all in my thoughts.
Laurel
Wishing you all the best Laurel! Congratulations on your new life and happiness! Being over a ten year survivor, you must be very knowledgeable about POEMS and having good medical care also!
Thank you, Nancy. I often find myself educating the doctors about POEMS!