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Myeloma Lessons: Is It The Disease, The Treatment, Or Simply Age?

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Published: May 30, 2014 9:43 am

Hello fellow Myeloma Beacon readers. My name is Andrew (Andy works too), and I have been an avid consumer of the many resources offered by The Beacon since my myeloma diagnosis at the end of June 2013.

Throughout my myeloma journey so far – which has included induction treat­ment and a stem cell transplant at the end of January of this year – I have found it particularly helpful to read what others have experienced during their own jour­neys down the path I am now traveling.

Thus, to return the favor, I have decided to write a monthly column to share not just what I have gone through, but also what I have thought about, how the trip down myeloma lane so far has changed me, and what les­sons can be drawn from these experiences.

I hope that you will find my observations thought provoking, and that you will share your thoughts on the themes I discuss by leaving comments on my columns.

The topic for my first column was triggered by a posting not long ago by a regular participant in the Myeloma Beacon’s discussion forum. In the posting, the author wondered if her seemingly reduced cognitive function was the result of chemo brain or just getting older.

It made me think about similar thoughts I have had over the past nine months about my physical abilities.

But first a little personal history.  I am 61 years old, and for a long as I can remember, I have been physically active to the extreme. I regularly work out twice a day during the week and take three- to four-hour bike rides each day on the weekend.

Although I no longer bike competitively, I have always set goals for myself when I ride, and I pay close at­ten­tion to my average speed. Thus, I had noticed during the two years leading up to last spring that my times had gotten progressively slower. I just assumed that, because I was getting older, my physical per­for­mance level was declining.

Then May 12, 2013 happened.

On that day – a Mother's Day Sunday – I had just about completed a normal day of activity. I rode my bike for 70 miles, mowed the grass, and washed the car. Then, as I was doing some very light gardening, I got a severe pain in the middle of the right side of my back. It felt like a muscle spasm or pull, but when it would not subside, I went in the house to rest.

Six weeks of chiropractic adjustments, physical therapy, acupuncture, and massage treatments failed to pro­duce a cure. And during this time, although I tried to continue my workout regimen, I found that I was hav­ing trouble with stamina and getting enough oxygen to deal with physical exertion. I thought, however, that this was the result of not being able to breathe deeply due to the back pain.

Thankfully, at the end those six weeks of ineffective treatment, the chiropractor suggested that I get an x-ray.

I was shocked when the x-ray showed an apparent broken rib. Having done nothing stressful enough to break a rib, I went for blood tests. That very same evening my doctor called and said that the blood test showed that I had severe anemia. He urged me to go to the hospital immediately for a transfusion.

As a part of the process of preparing me for the transfusion, the emergency room doctor ordered a full range of blood tests in an attempt to identify the cause of the anemia. Those tests revealed the likelihood of mye­loma, which was confirmed with a bone marrow biopsy two days later.

Since then, I have been through induction therapy and a stem cell transplant, both of which I will discuss in later columns.  I have continued to exercise as much as possible during the treatment. But, suffice to say, my performance has not been up to the level I had become used to.

As I have gone through the various stages of my diagnosis and treatment, I have found myself asking the following question: Is this fall off in physical performance due to the disease, the treatment, or just part of the aging process?

Because of the usually slow progress of multiple myeloma, it is likely that I was feeling the effects of the disease and the resulting anemia long before I was diagnosed. Once the anemia was reversed, first with the transfusions and then the induction treatment, I did not immediately return to my former levels of physical performance. Was that because of the treatments, the lingering effects of the disease, or just because I continued to age?

I have come to the conclusion that questions like these cannot be answered. But, even more importantly, there is no reason to answer them.

Avid readers of The Myeloma Beacon will know that many myeloma patients talk about their “new normal.” They stress how important it is to embrace it because, once you are diagnosed with the disease, life will never be the same -- regardless of your individual circumstances.

Even for those fortunate enough to have a great response to treatment, to have few physical limitations, and to maintain a complete or near complete response for an extended period of time, there are always the lin­ger­ing questions: When will it return, and how will I deal with it?

So the lesson for me – a difficult one for an analytical type – is to forego the analysis. The reason why we are the way we are today is irrelevant. The important question is: What can we do?

And then we simply should do it and enjoy it.

In my case, whether the average speed of a ride is 16, 17, 18 or 19 miles per hour is unimportant. The im­portant thing is that I am able to ride, enjoy the outdoors, and improve my physical and mental health.

It seems so elementary, but it has taken me far too long to realize.

───────────────── ♦ ─────────────────

Since being diagnosed with multiple myeloma, I have learned a lot; about myself, about my friends and fam­i­ly, and about the disease itself. In these columns, I will attempt to relay what I have learned -- hence the title of the column, "Myeloma Lessons." I hope that by sharing my experiences, I can help the Beacon's readers learn a bit more about themselves and how to deal with the disease. I also hope that your com­ments will help us all to learn even more about how to deal with the sometimes confusing place in which we find ourselves.

Andrew Gordon is a multiple myeloma patient and the newest columnist here at The Myeloma Beacon. His column will be published once a month.

If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .

Photo of Andrew Gordon, monthly columnist at The Myeloma Beacon.
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29 Comments »

  • Gil Siegel said:

    Great start on a new column. I certainly can relate to your concerns about physical activity. It has taken me a long time to adjust to limitations caused by MM. My second SCT was on 12/9/10. I am 65 and doing everything I want to do physically, but with caution. I always save a little for the next day. I was diagnosed on 1/10/10.

    Keep moving forward stay strong!

  • stephen said:

    Hi Andrew,

    Good concept for a 'Beacon' column. Your workout schedule is impressive. Some of my best summers were spent training for the Pan Mass Challenge (PMC), though never with the intensity of your workouts.

    I think 2010 was my last PMC. I recall trying to keep up with a young oncologist friend from the Dana-Farber as he pulled away on a hill. I must have been blowing pretty hard because he turned in the saddle and said,'Don't kill yourself now. You do have some years on me.' (supposed to make me feel better maybe?)

    I was diagnosed in January 2003 after surgery to remove a plasmacytoma from my upper rib cage. The intervening years have been good. Much of time between treatment periods I've been active, exercising and enjoying life.

    I had a stem cell transplant in September of 2012 and for the first time began to feel my age. At 66 I'm determined to recover some of that 'vigor' as JFK used to say, and I think that's what is important. So, though I have some years on you, Andrew, I believe we are kindred spirits. I look for ward to your next column.

  • Ellen Goldstein-Harris said:

    Your workout schedule is certainly impressive! I was an avid exerciser prior to my diagnosis last month. I am hopeful that I will be able to get back to some semblance of physical activity soon. I find that my energy level is not there yet, and the chemo (RVD) also takes a lot out of me. I have been thinking about beginning a walking program as a starting point, just so that I can become a little better conditioned before I try anything more strenuous.

    I wish you the best in your recovery and in facing the challenges that present. I agree wholeheartedly that we all have to adjust to the "new normal," but that it should not stop us from doing the things that we love, even if we cannot do them with the same intensity. Thank you for a very thoughtful and well written column!

  • Nancy Shamanna said:

    Hi Andrew, I can see some pluses to your strong exercise regimen. First, before diagnosis, you may well have pushed your limits to fracture a rib by trying to accomplish such a lot in one morning, thus getting an earlier diagnosis than might otherwise have been the case. And also your habits of exercising will help you to keep your immune system strong and also to stay healthy in other aspects of your life.

    Thanks for writing a column and sharing your insights.

  • Coach Hoke said:

    You Beacon readers are indeed fortunate to have Andrew on board. I have had several conversations with Andrew whether my twinges are due to MM, my treatments, or my age, and he is rude enough to point out that it is probably my age (even though I'm only 73). I am always amazed at his energy (70-mile bike rides, twice-a-day workouts, while working full-time). Then I remember he works for the government.

    Seriously, he does research on every facet of this disease, whether it's ONJ or different maintenance procedures. He has been a big help to me as I know he will be to many of you readers.

    Coach Hoke

  • Ron Harvot said:

    Andrew,

    I am also an avid cyclist and have post that has been on going for a few years. It is a post based on goal setting and concentrating on something other than the disease.

    I experienced a drop off in performance before I was origninally diagnosed. I found that I could not do long rides on back to back days. When I started initial induction treatment I also had to cut back expecially after taking 40 mg of dex. The treatments dictated when I could ride and how hard. As I went into a remissive state and the treatments were cut back, I noted that my performance in both speed and endurance increased. I never had an ASCT so I cannot opine on how long after such proceedure your body rebuilds itself. However, I do believe you will regain much of your endurance and speed.

    Keep pedaling and may the wind be at your back!

    Ron

  • Vickie, wife of Frank with mm said:

    Such a great article Andrew and I appreciate you sharing this. It was as if I was reading my own husband's descent in to the myeloma world.

    My husband's experience, early on, was identical to yours. Some mystery pains that leveled him. He simply chalked it up to his age. Just as you described the slow progress of myeloma, we too now realize that my husband was already feeling the effects of the disease and anemia, long before his diagnosis. I personally wrestle with that fact alone. If the clock is ticking in terms of how long a person has actually lived with myeloma, I don't think that clock is reset when a doctor makes the final diagnosis. Maybe it is, or at least I would like to think so.

    Thanks for a most accurate and thought provoking post. May you continue to do well in your newfound modus operandi.

  • judy wirtz said:

    Andrew,

    Thank you so much for your sharing your experience. Mine is a similar one. Strong Mt. Biker Mama that took so much pride and a little bit of pure ego in being able to keep up with the younger ones. I live in West Marin and just outside my door takes us up and up. I feel very fortunate.

    My story is a lot like yours and others when all of the sudden there is a decline in our abilities and we prolong our diagnose on "getting older" or like yourself mysteriously find ourselves with a broken rib.

    The "new norm" for me now is getting out each day and hiking the hills with my dog. Yes, I miss my bike a lot, I do cry easily, but exercise whatever it may be is good for the emotional being. It is the best medication for depression.

    Keep riding and thank you for the thoughtful article.

  • Andrew (author) said:

    Whew ... I was worried that there would be no comments and The Beacon would fire me after just one column.

    Thanks to all for the kind words and encouragement. It is great to see that so many others are doing everything that they can to stay active.

    Gil, I agree with your approach to do as much as you can but with caution. I often say, "live to fight another day."

    Nancy, your thoughts will be a part of a future column; exercise can be both good and bad.

    Coach, you know I was kidding with the age comment. You are as youthful and feisty as they come and have been a source of great comfort to me.

    Ron, I am well aware of your long-running thread "Biking With Multiple Myeloma" forum thread, and have posted to it several times. When I was struggling with a severe reaction to Zometa and could barely walk for almost a month, reading that thread gave me inspiration.

  • Mike said:

    Andrew,

    Thanks for sharing a bit of your MM experience, which for every new patient often have something unique about it. I am looking forward to many more of your columns as we both go through the "journey". These are interesting times we live in and I am so positive that existing and new MM patients will see amazing progress in the near future.

    As a member of the "Class of 2009" I see new procedures and medications augmenting (and sometimes even obsoleting!) procedures I saw in my earlier years.

    Andrew, thanks for a Great Article -- looking forward for more!

  • Alex said:

    Hopefully I will read more of how myeloma causes many a day to be not so great. The trend of many correspondents is to relate the upbeat happiness that their cancer has brought them. The guilt I get from reading how many marathons have been run or barn dances have been attended is palpable.

    Can I please hear of your bad days, the days that don't work out and what others go through. Bed ridden days or feeling like a wet towel are frequent but little is gained when reading about gala dinners or flying across our country lecturing people on the condition.

  • Valerie said:

    Andrew thank you so much for sharing your journey. I am newly diagnosed, and we are still in the process of determining whether I am smoldering or symptomatic. I agree your previous work out regimen was impressive to say the least.

    Signed, Hooked On Your Column. BE WELL!

  • Liz said:

    I, too, share some similarities to your story. I was a runner and simply could not get my speed up. As well, the stairs at work would leave me breathless. I believe if I hadn't been in such good shape these issues would have been less noticeable. It was enough to send me to the doctor where blood work revealed anemia and the search was on. I switched from running and weight training to walking and yoga during induction therapy. I am SCT +17 and was able to walk a km every day but 2 while I was in hospital.

  • Cherie said:

    Hi Andrew,

    Great story, sad to hear that like all of us, you got MM, but good to hear that like so many of us, you have grown from it.

    I was diagnosed in November of 2012. I too was an excercise fanatic. Triathlons, pilates and yoga were my passion. Two months before diagnosis I climbed a big hill in AZ with a broken rib (I later found out). The climb took 4 hours and I was severely anemic, it turned out, and with the many lesions and tumors on my spine and ribs, this little journey could have ended really bad. I interpreted my exhaustion to being a single Mom, working at a spa 40 hours a week doing many massages and other physical work.

    One of my coworkers tried to "fix" me one day and I heard another rib break (I later found out). When I think of all the chiropractic adjustments I received in that time, I so easily could have broken my spine, there truly must have been a guardian angel watching over me.

    When I was finally diagnosed a couple of months later I was stage III and needed immediate transfusions, radiation to shrink one of the tumors on T4 which was pressing inside my spinal cord and brought me close to paralysis (I ended up in a wheel chair for many months).

    Fast forward 18 months, 9 cycles of induction chemo, two transplants and now back to chemo and I am beginning to think I can reach CR in the next year or so. Patience truly is a virtue and easy does it. HOPE is such an important emotion for us MM patients and I still have plenty of it. Unlike you, I was diagnosed in my early 40's and I have a little girl who needs me very much, so there is tons of reasons to fight, fight, FIGHT !!!

    Great article Andrew, I look forward to hearing and responding to more of your articles :>))))
    Cherie

  • Brenda said:

    Andrew, Great first column. I look forward to reading future offerings. Good luck with your treatment. I'm a caregiver for my husband, diagnosed in 2009. I noticed the "chemo brain" after his first chemo treatment back then and it continues today. It's part of our new normal, but normal for anyone with this disease is so individual. We are in the last few days of an outpatient ASCT, so different than the first inpatient one. These are potential topics for future columns! As we look forward to returning home to recover, I wish you CR.

  • Patty Ladd said:

    Andy, thank you for making the decision to support MM folks by writing a monthly column. I easily related to your thoughts and experiences --particularly being extremely anemic. I was diagnosed in Feb. 2014 and have just completed month 3 of RVD. Fortunately, I am responding well to this combination; however, it's been quite a challenge adjusting to the "new normal." In Jan. 2014, I turned 65 and had just retired and relocated with my husband from San Diego to Gig Harbor, WA. I refuse to "whine" or ask "why me?"; however, I do still feel quite stunned as I learn to deal with "living with cancer."

    Thanks for encouraging all of us to exercise. Fortunately, I've exercised my entire life, and my new routine includes yoga and Pilates classes that are offered at a local medical center. Walking our dog is also a daily opportunity to breathe deeply and appreciate all that life offers.

    I send you and your readers my prayers for peace along this shared journey.

  • nigel brammer said:

    hi Andrew

    My MM experience has been similar to yours only I was diagnosed in Feb 2011. I was falling behind on the hills during rides with my regular cycling mates. One is a GP. He was concerned and arranged a blood test for me. MM was confirmed.

    I had a stem cell transplant in late 2011, did well and now have monthly blood tests and intragram a blood product. I read the monthly bloods results regular with anticipation. At what level will my abnormal protein be? It has been low and reasonably steady so far.

    I'm cycling regularly and enjoying the moment.

    cheers

    Nigel

  • Ron Harvot said:

    Andrew,

    I had already hit the send button when I realized that I had traded posts with you on the Biking with Mulitple Myeloma thread. I am glad you are back on the bike and like I said, I believe you will regain much of your speed and stamina. You probably will not get back 100% but will be much better than you are now. The treatments takes a lot out of you. Hopefully you will enter a long remissive state with no or just minimal maintenance. With that you should see a big improvement in performance.

    Look forward to following your column.

    Ron

  • Sylvia B said:

    Hi, Andrew!

    Thank you so much for writing your column. It is very helpful, for sure. I also hope that you are feeling well today and enjoying the exercise that you do. Your question: "What can I do?" really hit home. For me, I've found that my daily walks in my community help so much, especially by trying to increase my distance/speed bit by bit. Some days have been tough (chemo treatments/recovery from stem-cell trans.), but, you know, just doing what I can and giving myself my own challenges really helps a lot in keeping my spirits up plus keeping the ol' bod in the best shape I can.

    I'm looking forward to reading your column again.

    Sylvia

  • Mark said:

    Hi Andrew,

    Great first column. As a younger patient who used to be complimented by peers/managers at work for having a great memory I know that the therapy definitely affects cognitive function. I was telling my friends they are not going to like it when they get older and forget why they went downstairs as soon as they get there! I have been off all myeloma drugs for 3 years so fortunately my cognitive seems back to normal with the therapy break.

    Looking forward to the next column.

    Mark

  • nzmum said:

    Looking forward to your monthly columns! Diagnosed MM end of march and hopefullly SCT in August. Worlds apart from your level of fitness but biker and walker forced to give up walking due to arthritis. Chronic anaemia but doc and I thought we had that covered. Had xray to assess arthritis and that's the day the world changed.

    Was put off work due to heavy lifting and walking as told no lifting or unnecessary walking due to risk of path fractures in pelvis. Since I started treatment I have had minimal side effects and feel fantastic!

    Bought a bike stand and started exercising because I could see muscles disappearing and it scared me. Have set some goals which I struggled with after diagnosis and want to be as fit as possible when I go for SCT to help with recovery.

    I am 49 and blamed my worsening health on age. I know now it wasn't that and plan to make the most of my future and keeping fit is going to help with my journey. Rather not have MM but planning to make the most of the days I once took for granted!

  • Cathy said:

    My husband was diagnosed in January 2010. He was 41 yrs old. He, like you, is very active. He is slower now and keeps asking me if it is his age or the mm ... lol ... I am 6 years older than him, so I always tell him it is his age! That seems to make him feel better.

    Thanks for your column. It is nice to know he isn't alone in this crazy cancer. Take care

  • Andrew (author) said:

    I am gratified by the many positive comments to my first column. I am certainly glad that some found my experiences to be helpful. To those who are looking forward to future columns I hope that you will enjoy them as well.

    I am not sure why, but I was somewhat surprised to hear from so many who had experiences similar to mine so far. Nice to see that I am not the only "crazy" one. In my mind it is important to be mentally tough in dealing with this disease and pushing your body within the limits that the effects of the disease permits helps to reinforce that toughness.

  • steve waggoner said:

    My wife was diagnosed with multiple myeloma in dec.2013 and she has bad cramps in calves and numbness in her feet. I was wondering if that's permanent or gets better with time. She had 10 weeks of treatment(20 shots) We love your column, Thank You.

  • Andrew (author) said:

    Steve,

    Thanks for your comment. Since I am not a doctor I don't feel comfortable answering your questions. I do know that numbness in the feet can be a side effect of Velcade and should be discussed with your wife's doctor. Some patients commenting in the Beacon's discussion forums have mentioned calf cramps. A search on the Beacon site likely will turn up some information. Again, I think you should discuss it with the treating physician.

  • Barbara said:

    Hi Andrew; I was extremely impressed with your new column and wish you continued success. I know it will grow as each person gives and receives important information about their journeys with MM.

  • Dot Foley said:

    Hi Andrew, like everyone says, great read, look forward to your next one. My start was anemia which with MD give me prescription iron pills; couldn't take them. She ignored my anemia by saying oh eat life cerial and hung up the phone. Went for a colonoscopy, says can't do it till you get a pint of blood; don't know how you are standing -- see a urologist immediately. Diagnosed in 2010 after the death of my husband. He said I had mm probably for a year before I saw him. One thing that always gives me hope is there are so many chemos comming down the pike. For some of you, there may be a cure. Probably not in my time. I am about to turn 75. Where does time go? I am very lucky, I really have quality of life. Energy can come more from age than mm.

  • Jim McGivern said:

    It wasn't until I began treatment in June (Cytox/Velcade/Dex) that it dawned on me that I indeed have a "new normal" to live with. I retired from public school teaching at age 58 in January, had a physical, and got the news that my total protein level was elevated. Long story short, my IgA level was near 4700 and bone marrow biopsy at approx. 30%. Tomorrow will mark my 4th treatment. I don't particularly look forward to that time, but the oncologist, nurses, etc could not have made the beginning of this journey any smoother. Most days I am pretty tired, but on occasion, I feel like Superman and try to accomplish too much but that's where the joy comes from. Living life the best way I know with my supportive, loving wife of 38 years. I will be ok, my relationships are deepening each day. As with most things in life, this too shall pass. Blessings.

  • Bob Gillespie said:

    Sounds like a winner. I've been on Velcade, cyclophosphamide, and dexamethasone, three weeks on one week off, for the last 14 months. Yet I am not in remission; it has seemed to level off my blood counts, which are checked monthly. I had all the usual symptoms, the back pain, too tired to do anything, my garden suffered as did I. I live alone with my two miniature dachshunds, I have feeder hogs, so that keeps me as busy as I want. I am turning 64 this year, retired at 55, was married once for 6 years (never want to be that happy again) but have a lot of friends and family who help me out.

    It sounds like a lot of you, including Andrew, are doing all the right things. One thing I would like to mention is stress. I learned 40 years ago that stress can run and then ruin your quality of life. I was a crane operator for all those years, which taught me what stress can do or not do to your quality of life and the length of your well being. I believe everyone handles this in a manner that works for them. Good luck