Mohr’s Myeloma Musings: Four Memories And Four Lessons In Four Years
A national news magazine recently had a cover story about potential new cancer immunotherapies. The article also includes a discussion about clinical trials. While I found the article informative, I thought that it focused too much on the cost and exclusiveness of clinical trials and the fact that such trials are not available to most cancer patients.
What gave me the most food for thought from this article was the opening sentence: "Dates are important to a person who knows he is dying from cancer." The article suggests that dates from such events as "the call," the first visit to the cancer center, the first treatment, and the like, are dates that become etched in memories.
I reject using the word terminal when contemplating my future or discussing my condition. I feel very much alive and not like I am dying. Nonetheless, it is a pretty safe assumption that multiple myeloma will cut short my life. The above mentioned article got me to thinking about the significant events of my four years of living with multiple myeloma.
I am terrible remembering dates, especially milestone dates such as birthdays and anniversaries. Having said that, by a sheer quirk of circumstance, four years from the day that I am writing this column I received the call from my doctor informing me that I had multiple myeloma.
While I find it difficult to remember dates, I can recall events. There are four events that I remember well since April 12, 2012.
One of my most vivid early memories of being a myeloma patient was when my wife and I made our first trip to my cancer center for my first bone marrow biopsy. We mistakenly turned left when we should have turned right out of the elevator, and we ended up in the inpatient chemotherapy ward. For someone who felt and looked very healthy, it was a sobering sight. Almost every patient was wearing a mask, and most were hooked up to an IV cart. At the risk of sounding insensitive and feeding the stereotype of the physical appearance of cancer patients, many looked as if they had endured chemotherapy for quite some time. I couldn’t help but wonder if this was my fate.
The second memorable event of my life with multiple myeloma involved my initial radiation treatment for a 3 centimeter-sized lesion on my left hip. The radiation wing of my cancer center was located in the lowest level of the building. The warm, welcoming atmosphere created by the disposition of the receptionists and bubbly enthusiasm of the young technicians quickly gave way to a more somber, dark feeling as soon as I passed through the thick metal doors into the radiation room.
The room was sparsely furnished. Located in the middle of the room was the external radiation therapy machine. I clearly remember thinking that it was ominous looking, reminding me of Star Wars-type weaponry. The country music that the young technicians were playing lightened the mood somewhat, as did the good-natured banter between us that centered around the fact that there was only one country music artist I enjoyed listening to, Shania Twain. (The technicians surprised me with Shania Twain music playing over the sound system when I returned the next day for my second treatment.)
That initial radiation treatment and the 24 treatments that followed over the next five weeks were anticlimactic. It actually took more time to get undressed and situated for the treatment than the actual treatment itself.
Fortunately, I have not suffered physically directly from multiple myeloma. But my first memory of a physical impairment associated with the treatment of the disease – and the third memory in my list of four – occurred three weeks after my last radiation treatment. I was on a family vacation, taking my daily early morning walk on the beach, when I was suddenly overcome by an overwhelming bout of fatigue. The fatigue lingered for the rest of our vacation, and it prepared me somewhat for similar bouts of fatigue caused later by Revlimid (lenalidomide).
Six months after my radiation treatments ended, I began induction therapy that included a daily dose of 15 mg of Revlimid and a once weekly dose of 25 mg of dexamethasone. My first experience with dexamethasone was truly memorable – the final memory in my list. I remember taking the dose before leaving for work at 6:00 in the morning. I didn’t sleep for 36 hours. I was full of energy, overly talkative, and argumentative. Despite warnings to my family that such behavior might occur, they weren’t prepared for this new personality in the family.
What are the four lessons I have learned in four years of living with multiple myeloma?
First, be cautious in using the term terminal when describing the disease. The term terminal suggests imminent death. I know four individuals with multiple myeloma in my immediate surroundings. Three of those four were diagnosed at approximately the same time I was, the fourth just five months ago. All four are now living near normal lives and their prognoses, like mine, look good.
The second lesson I learned was to not underestimate the treatment side effects. The individual who coined the saying “The treatment is worse than the disease” must have been thinking about multiple myeloma when they came up with the saying. While the various treatment regimens are generally effective in slowing progression of the disease, the side effects of these treatments, as every multiple myeloma patient can attest, can significantly alter one’s quality of life.
To illustrate the above point, my personal experience regarding the side effects of treatment is probably similar to most who are on a treatment regimen. My current maintenance treatment plan has me taking one pill (10 mg) daily of Revlimid. I then take six other pills throughout the remainder of the day to control the side effects of that 10 mg pill.
Knowing one’s limitations, whether those limitations are caused by multiple myeloma or the side effects of the various treatments, and adjusting to those limitations, is a lesson that took me four years to learn. I retired nearly four months ago, acknowledging the fact that the side effects of treatment were impairing my ability to work at the level I expected of myself. I haven’t regretted that decision and now wish I wouldn’t have put it off for as long as I did.
And the fourth lesson I learned is to live in the moment. “If you aren’t in the moment, you are either looking forward to uncertainty or back to pain and regret.” Smarter words of advice have never been spoken about living with multiple myeloma, even though they came from an unlikely source, comedian Jim Carrey.
Hopefully, I will have more events and lessons to share in years to come.
Steve Mohr is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
I like this article he is right on point I have my brother in the same place he gets up everyday makes a plan for the day and get to work on it.
Well said about trying to live in the moment!
Steve, thanks for sharing your wise lessons learned. Your story certainly speaks to the fact that experience is a fine teacher. Wishing you (and your myeloma friends) all the best as you march forward.
Very interesting article and so true!! I too have learned many lessons from my multiple myeloma and after going through a stem cell transplant and told that I was in the last stage and not expected to make it (and it is now 1 year 6 months later) have also learned to live each day to its fullest. I am currently in full remission.
Thanks for the article. Like yourself, I do not think of myself as being terminal. Living each day to our best, makes the next day not so different than the one before. Soon one is building a long chain of days that is extending to years, and life is pretty good despite the meds. Starting a new line of medication is always a bit intimidating, but the myeloma meds are getting better with each new addition, and side effects seem to be less also. Thanks for the insights.
Thanks for the thoughtful column, Steve. I think that the new cancer immunotherapies do give patients hope that our disease will become more of a chronic condition. Out of curiosity, could you share what other meds you are taking to counteract the effects of Revlimid? Best wishes on your ongoing improved health, due to the treatments you have taken so far.
Steve, thanks for the lessons learned. Your column and especially the quote really resonated with me this month.
Steve, well said. I was wondering if one of the side affects you are experiencing from Revlimid is diarrhea? When I was taking 20 mg Revlimid, I started to have violent bouts of diarrhea. I read an article in the Myeloma Beacon quoting Dr. Paul Richardson from Dana Farber. He recommended trying colestipol. It worked for me after taking it for two days. And now I rarely take and only take on an as needed basis. Ask your oncologist what he thinks and look for Dr. Richardson's article in the Beacon.
Also, my oncologist has lowered my dose of Revlimid to 10 mg on a 21 day cycle. I have been in full remission for two years.
Karen - I think that as the reality of living with an incurable disease plus the factor of getting older (I just turned 60), it is so easy to allow these circumstances to define us. Making a plan as your husband does and then getting after it enable us to lead a near normal life.
Gilbert - The Good Book says that tomorrow will worry about itself and that each day has enough trouble of its own. Pretty simple but sound advice.
Sean - I am certain that every myeloma veteran has "nuggets" of advice / lessons to share. I think that is what makes The Beacon such a valuable resource in that, through the columns and Forum, these nuggets are made available to others.
Lorraine - What an uplifting story yours is! To think you were in a terminal condition and are now in remission is reason for hope in those who might be in the worst of circumstances.
Eric - Your words of "Soon one is building a long chain of days that is extending to years and life is pretty good despite the meds" brings to mind a small plaque my wife has on our on our kitchen windowsill that says, Make Some Memories. Very well put!
Nancy, Patty K. - I take 2 625 mg. tablets of Welchol (colesevelam) for diarrhea. It has been very effective. I take 2 400 mg tablets of acyclovir a day as an antiviral. I understand this is mostly aimed at preventing shingles. I have been on that since my transplant 2 years ago. I take 1 capsule (60 mg) of duloxetine for neuropathy. Recently I was prescribed 2 capsules a day of 10 MEQ due to the fact that I have had low potassium numbers. Finally, I take the normal aspirin tablet to prevent blood cuts from the Revlimid.
Tabitha - I never thought I would see the day when I would quote Jim Carrey, but it is profound advice for anyone, regardless of their circumstances or situation in life.
I used to feel like I was a lazy person, but in talking to and reading what other multiple myeloma patients have said about fatigue due to our disease and the treatment, I've stopped bashing myself.
To answer what Patty K asked above, I also experience bouts of diarrhea and/or IBS with Revlimid. It has been lovingly referred to as "Revi belly." I always carry Immodium in my purse with me. It has just become part of my new normal. It's a literal pain, but a price I'm willing to pay to stay alive.
Thanks for your article, Steve.
I suffered with diarrhea while on Revlimid. With the addition of colestipol that I take at bedtime, it is under control and I can go out without worrying. It was a great relief to me.
I hope this helps.
Susan - I think most myeloma patients can identify with how you felt. I found that the fatigue we suffer from, whether it be myeloma or myeloma treatment induced, is unlike any other fatigue I have experienced. As a college athlete, I have experienced physical fatigue (my football coach was in the Woody Hayes mold), and over the years in my work career suffered mental fatigue. Myeloma fatigue is far different than either of these, as I found you could fight through them and often get a second wind. Myeloma fatigue borders on being debilitating and I find there is little one can do other than just rest and ride it out.
Betty - Fortunately for me, the Welchol (colesevelam) has proven very effective and I find that, as long as I take it as prescribed, I have avoided "Revi belly" (as Susan describes it). I tried to deal with it with Immodium, but found that it took me to the other extreme, constipation, and I suffered from uncomfortable cramping as well.
Steve - Thanks for a great article. My husband's key myeloma dates are now part of our collection of important dates, too. And like you, we never think or voice "terminal" when referring to his cancer. With the new treatments available, we are hopeful for many years and lots of plans for the future.
Steve - I do appreciate your article and the insights you have learned thru your experience with myeloma. I have yet to start treatment since I was diagnosed with myeloma and lymphoma March of 2015. My problem is I think about my condition everyday. I know that the day is coming when treatment will be required, and I find myself dreading that day. I know that there are many who were diagnosed at a later stage in their myeloma, and I should consider myself lucky in that part, but it just doesn't get any easier – at least it doesn't for me. There are a lot of strong people at the Beacon and I hope that I can be as strong when treatments are started. I guess I just needed to open up to someone and I find the Beacon is a good place for it. Kindred spirits. Stay strong, Steve, for your strength gives to others.
PattyB - While I don't like to use the word terminal, I also don't like to use the word chronic, as I think use of that word tends to diminish the seriousness of the disease. Having said that, with all of the new treatments that are coming, and those that already have arrived, maybe chronic is a more appropriate term now.
Pappystrout - You should keep in mind that myeloma and its treatments are heterogeneous and that your treatment could have few side effects and very little impact on your quality of life. And if you do experience side effects, many of them can be controlled by meds. There is no doubt The Beacon is a wonderful site. I gain motivation and information (especially now with Myeloma Mornings) that can't be found elsewhere. Stay positive and may your treatment-free life continue for quite some time.
Aloha Steve,
Our paths are so similar it is scary. Every time I read one of your articles I feel like wrote it myself.
Love your lessons. I can't get over how much having myeloma has changed my life. Much of it for the better. I feel guilty because I am getting so many good days out of my life. Before diagnosis I had just as many good days, but I don't remember recognizing them so fully.
Great article. Keep living in the present and enjoy the heck out of your retirement!
Aloha
Tom
Tom - Your words, "Before diagnosis, I had just as many good days, but I just don't remember recognizing them so fully" mirrors exactly what my experience has been. It was hard to explain such a feeling, but thanks to your description, I can put it into words now. Thanks!
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