Myeloma In Paradise: You Look Really Good
Multiple myeloma is very frustrating.
I know, I know. I am stating the obvious. Sometimes it just helps to say it out loud.
How can I have terminal cancer and not be sick? I mean, I see the results of the lab tests and mostly I understand them, so I know I really do have this cursed disease. However, I don’t really feel sick.
For those of you battling disease with very real – and very difficult – symptoms, this probably sounds like a rich man complaining about poor butler service. But for those of us who are currently asymptomatic, this is the conundrum we have to figure out every day.
Don’t get me wrong; I very much understand that I am truly blessed to be in a relatively benign stage of my disease.
I have had the opportunity to come to grips with my diagnosis without having to battle serious debilitating physical symptoms. I have used this time to re-focus my life in a way that I don’t waste whatever days I have left. I have been able to cherish my moments with my family in a way I would never have been able before my diagnosis.
So what do I have to complain about?
Well, it’s not looking sick, I guess.
Whenever people who know about my cancer see me, they tell me how good I look (not a problem I had before I got cancer). What my hyperactive imagination hears, however, is “why don’t you look sick?” I imagine these people all huddled in a corner somewhere deciding whether or not to believe me when I say I really do have cancer.
My closest friends and my family, however, have seen the change in my stamina. They have been aware of my underlying colitis condition that is related to my myeloma.
People I don’t see that often, however, seem perplexed that I am doing so well. If somebody asks, I explain how myeloma works on some of us and how it can (hopefully) take years to cause major symptoms. But most people just get a puzzled look on their face and change the subject.
I guess the one I really need to convince that I am sick is me! Here I am, a seemingly healthy man, who feels pretty good and who I have to continuously talk into continuing to treat a disease he can’t touch, feel, or even sense that he has.
In the two years since my diagnosis, I have changed my life significantly to accommodate hundreds of blood tests and doctors’ appointments. I have undergone nine months of induction therapy, and am now enduring indefinite maintenance therapy. I have even flown to the mainland in order to have my stem cells harvested and to undergo some serious infusion therapy.
All this for a guy who doesn’t seem sick – except for all the treatment!
This whole thing goes against my logic. Why do I treat myself for something I can’t even tell that I have?
The answer is: for my family.
Every day I look at my pill box (you know the one all us old and/or sick people have to keep the meds straight), and I pause to consider whether or not I am doing the right thing. I know that while the treatment is keeping my cancer in control, it is also hurting my body to some degree and making me feel tired or wired, grumpy or happy, and generally just not feeling very well. When I have had my treatment “vacations,” I have really felt the difference in my body.
I have to keep taking drugs that make me sick so the disease, which hasn’t yet made me sick, doesn’t make me sick.
Got that?
That wacky statement pretty much defines my myeloma.
In the beginning of my disease, I was able to just wish it all away. My cancer load was small enough that I could just keep track of it and not treat it. During this short period of time, I didn’t realize just how good I had it.
Unfortunately, my free light chains increased rapidly, and within six months, I had to make the decision whether or not to start treatment.
I seriously considered not starting treatment, or using only naturopathic remedies, as I was terrified of it. I realized, though, that I had to consider the other people in my life – my children and my wife. Two doctors said that I probably wouldn’t make two years without treatment.
I didn’t used to trust doctors to know what was going on all the time. Heck, I didn’t always believe that they would tell me the truth unless it was in their best interest. So should I listen to them and take the drugs even though I felt fine, or should I wait and see if they are all wrong?
Eventually the scientific side of my brain took over and asked: What if you're wrong? What if you did nothing because of your fear of treatment and you died way earlier than you needed to?
In the end, I decided to start treatment without delay. I made the decision to do everything in my power to see my boys grow to men. For me, it was the right choice.
Even though it goes against my instincts, I take my pills every day. I monitor my blood every month. And when it is time, I will willingly destroy my remaining immune system during my stem cell transplant in the hopes of buying myself some more good days.
For those of you facing this choice, take heart. What I was so afraid of was the chemotherapy I saw others endure going back 40 years. I have to admit, though, that that treatment was for very different cancers than myeloma and was generally much harsher.
The treatment most of us get for multiple myeloma today is much more targeted and tolerated very easily compared to the treatments used 40 years ago. Even though I have been on and off treatment for over 18 months now, I am still able to do pretty much everything I did before I started. My experience is not atypical. Most folks do just as well.
I am satisfied with my treatment so far, and I’m glad I decided to undergo it. If you need to make this decision, try to remember that you are actually very lucky to have a choice. Many in our myeloma community are faced with no choice at all.
You will have one cross to bear, though. Be prepared for lots of people to tell you how well you look.
Oh well; I guess that really isn’t a problem after all!
Aloha and carpe diem!
Tom Shell is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. The title that he chose for his column, “Myeloma In Paradise,” is in reference to one of Hawaii's unofficial nicknames, Paradise.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
This (or same variation thereof) is myeloma in a nutshell: "I have to keep taking drugs that make me sick so the disease, which hasn’t yet made me sick, doesn’t make me sick." Love it! At 10 years out, I am taking drugs (Revlimid) that make me sick (blegggh) to keep the disease (which is in remission now but which has made me sick in the past) from making me sick (again) and, oh yeah, killing me.
Great column, Tom!
Spot on!
All through my treatment, my managers and colleagues were telling me how good I looked and asked me when I would be returning to work. If it had only been the myeloma, I probably wouldn't have had much time off at all. To say they were shocked when they found out I couldn't come back would be an understatement. The cancer is apparently in remission, but my spinal fracture has worsened and at this point nothing can be done about it, making me an unacceptable occupational health and safety risk.
So I look good, probably better than I have for years and, apart from fatigue, medication related drowsiness, and the exhausting, debilitating pain I suffer if I am up and about for more than a couple of hours, I actually feel better than I have for years. Definitely the treatment made me sicker than the disease ever did. The only manifestation I ever had besides the lesions and bone tumors was my light chain levels. I look great, but get run down very quickly then take days to recover. Appearances can be deceiving.
Listen to what you are all saying... Sure you look good from the skin, outward. It's what's going on inside that we all deal with.
The fatigue, weariness, bone lesions, digestive tract difficulties. MM patients become inured to much of the pain and discomfort after a couple of years dealing with it all.
I don't talk about it outside of MM communities and members of my family. People are busy and have their own stuff to deal with.Unless folks see you soon after a transplant or after a heavy dose of chemo or after surgery to remove a plasmacytoma or repair a broken bone, unless they see you in that condition it doesn't seem real. To them.
Tom, you have put my thoughts into perspective and onto paper. What you say fits me to a tee. Thank you for this column. I think I will print it out and tape it in my office to remind me why I do what I do to keep this disease at bay. My prayers for all of you and especially for those not as fortunate as us -- those of you who suffer so much more.
Tom, you have hit the nail on the head. In the 18 years I have been fighting this silent killer, it has never made me sick. But the treatment has. Fatigue, weight gain (20 kg / 44 lbs) etc are all due to the many and varied drugs I have taken.
When I was first diagnosed, there was no serum free light chain Assay - that came in around the year 2000. Here was a hard to accept fact: MM is classed as a blood cancer, but it could not be detected in my blood, only Bence Jones Protein in my urine. So did I have a blood cancer? When the SFLC test was developed, then it could be seen in my blood and since that time, my kappa light chains have been up and down, most recently up, having almost tripled since last month.
But still the disease gives me no trouble. The chemo certainly does. The new regimen I have just started required dex (40mg) for 4 consecutive days, 3 days off then 4 days on, throughout a 21 day cycle. I have been on and off dex since Feb 2013 and many times prior to that, but this is the largest dose I have ever been prescribed. But still I am constantly told how well I look and as in your situation that was not worthy of comment before diagnosis (if I can remember that far back).
I remain positive in the face of dire possibilities.
Great Story, Tom. Yes -- Spot On!
Amazing how after reading Tom's story, that the five comments that followed it paralleled my experience of the last 4 or 5 years. I guess we are in the same boat. At least for now there are an increasing number of options available, even if I don't tolerate all my meds, or I need to spend three full days a month for infusion. Yes, still this dreadful disease looms out there, but you don't give in. With research and clinical trials maybe we can get more tolerable meds. And if we understand the meds side effects in advance, it is not quite so shocking.
Thank you for putting down in words what goes through my mind every day. The chemistry of this disease still confuses me; but, I do know I really am sick and am blessed with two sons who accompany me to each doctor's appointment to translate their findings and keep me focused on treatment.
I found out about my MM because of an unexplained pain in my side that turned out to be a cracked rib. It's healing well, so right now, I don't hurt any more than any other 70-year-old. The meds (Revlimid and dex) do present some challenges, but I'm handling it OK. To be honest, my greatest fear is what lies ahead. When I focus on that, I have to keep telling myself that nobody else knows their future either. I'm sick and normal at the same time
Thank you, Tom, for such a clear description of the challenges. I am fairly certain most of the people in my life are of the opinion that I have become unmotivated, lazy, depressed, not eating well etc. Although its frustrating to me to be misunderstood, their conclusions are a reminder to me that they simply don't know. I try to remind myself when a comment arises in conversation, that I most want them to simply not worry and enjoy life, so I make less worrisome explanations and move on to a kinder place in conversation whenever I can.
My hope is that we'll all look back one day and understand this disease. I have reasoned that its no different for the scientists who are working tirelessly and caring greatly for an understanding about what is wrong. People searching for the answer with not enough information. I believe that when the breakthrough moment of understanding occurs, we will all exclaim "Now it makes sense, how did we not see this?"
Until then, I plan to do my best to care and love my precious people. I will honor them for caring as much as they could for what they knew and supportive enough to dream and hope and believe that they are right and we can make things better!
Tom,
I too am in the same boat. I am currently in CR, and I get the same statement. If they could feel the aches and pains I have just to get moving (2 sets of compression fractures). But I look good! Hope you continue to have that problem only for a long, long time!
Aloha All,
WOW! I am humbled by your response to my column. Thank you all for reminding me that there are so many of us in the same boat. While I am sorry you have to be in this leaky life raft with me, it is very helpful to hear that I am not alone and that what I am experiencing is "normal".
This response is exactly what drew me to the Beacon in the first place. Finding a place where we can learn from others' first hand experiences is SOOOOO much more valuable than reading about percentages of potential relapse on a medical web site. Please keep your responses coming. This forum is the key to new patients' understanding of what they are going through.
Aloha & Carpe Diem!
Tom
Aloha Tom,
I signed on to the Beacon newsletter to learn more about what you are going thru and to understand more about the disease. I enjoy reading your articles and also read the Beacon on a weekly basis to keep up to date.
As you know, I also have a family and often wonder what I would do in a similar situation. You have given me insight on what you have to deal with on a daily basis and decisions that would have to be made concerning treatment and how to cope mentally. I think more people should read this sort of newsletter frequently so they understand what some people have to go thru on a daily basis. And it makes you think about how much time we invest sweating the small stuff.
I believe you have changed the way I think about many things in life, and so have many of the other people that write articles at the Beacon. I will continue to monitor your success in treating your multiple myeloma and look forward to a cure one day.
Your neighbor, Lee
Thank you, Tom, for this article. It so concisely summarizes what is involved in treatment of multiple myeloma and maintenance. I have come to view it as maintenance of a normal life.
I have one compression fracture, but I somehow escaped with just the one. I was fairly athletic prior to learning about MM, and I believe the muscle strength in my back helped to support the other vertebrae. I do not have anything more than nuisance level pain, and I have near normal mobility. I hold my prior job, even though my mind feels like it runs a little slower. I have a weight limit but can do normal household chores. I have the "no running, no jumping, no impact" instructions from the neurosurgeon, but I don't see a lot of people my age doing too much of that either. Oh, and I have wonderful blood now with nicely balanced parts except for the WBCs.
But I do take Revlimid everyday, and I also have intestinal issues and some of the other things you describe. I have taken two drug vacations of two weeks, with my doctor asking me to never stop the Revlimid for more than two weeks. Once the total shock of my MM diagnosis left my head, I realized my doctor has my best interests in mind, and so I follow his advice. The Revlimid is doing a fantastic job for me as far as maintaining my remission (now 4 years after transplant).
Suzanne made me laugh out loud. Nobody knows their future. My collection of doctors have been so worried about me. Whenever I visit one of them now, they have a big smile and say, "Oh, it's so good to see you doing so well." So I don't get bogged down with the side effects too often. But I also have printed this column to help me remember that we are doing what we do to spend time with our families and to maintain as much of a normal life as we can. Like your doctor said, without treatment you had no more than two years, which does not mean two years of normal life.
Always remember that Dr. Arnold Goodman said he wished he could take Revlimid and that he got kicked out of the Pomalyst study due to pneumonia. He said he would give anything to be able to take a maintenance drug and to have the side effects if it were able to keep MM at bay. So in our present state with MM, I feel we are blessed to be on maintenance treatment. Thumbs up to all the researchers and the research funds for providing maintenance treatment. My doctor's recent advice is that I should be out celebrating. It is our job to make good use of the extra "normal life" time that has been given to us.
Tom, yes this has been my experience for the past 12 months. However I do have bad and off days, and that's when I hibernate. I only socialise when I feel good, so it's only my family that see me sitting on the sofa for three days straight in my pajamas, the tears with the mood swings from Rev, the nights of insomnia from dex. Friends only see the positive me, when I feel good and I always make an effort to dress nicely and wear makeup and do my hair when out in public. Some of my friends are shocked to hear I been on chemo treatment for nearly a year now and constantly say but you look so good. It's not until I explain about the fractured rib; the lesions in spine, neck, hips, and ribs; and the five hours of treatment every Thursday that they start understanding the seriousness of it all. I also get the question: How many treatments will you get? This is the million dollar question.
Aloha,
Marcia - Thank-you for the reminder of how good I have it. Arnie was one of my inspirations for beginning to write for the Beacon. I can never be reminded enough to make every meal a feast, every sunset a fine portrait, and every hug a connection to my heart!
Lee - I am touched by your words. I hope you continue to find inspiration in these pages. You are a good friend!
Aussiegirl - G'day and good on you for sharing your story. Hang in there and know that we are thinking of you. I do the same thing as you; show my friends the best side I have. I think we do this because while the sympathy feels good for a moment, it gets old pretty fast.
Great article! I can totally relate.
I too always get how good I look. Some even think I don't have cancer anymore! I'm that shiny new car, but under the hood, things aren't working as they should! It's hard to explain to people what I've gone through these last 3 years. Diagnosed in May 2011, stem cell transplant Oct 17th 2011. Monthly doctor appointments to monitor blood / Zometa / Aranesp. I am in complete response, but I have all the damage that comes along with MM. Kidney damage, neuropathy, very low platelets / red blood/white cells. BUT I push through. Work out now. Work full time and just live life! Grateful to be alive!
Keep on fighting!!
Judy Ü
I had to jump back in after reading the replies to Tom's piece to say this group of people, all of you, are outstanding. There's not a trace of self pity. Each of you is grabbing fistfuls of life, experiencing life in ways you never have before. If we could teach healthy people our secret what a magnificent world it would be.
As Marcia K wrote, "it's our job to make good use of the extra normal life time that has been given us."
Thanks Tom for opening this door. It's nice in here.
If only this many people said I looked good before I was diagnosed! My response, "Well you look good, too!"
Tom, et al. I do not have multiple myeloma but a friend of mine does. She has formed a fb page and graciously allowed some of her friends, me included, to be a part of her journey, the good days and the bad. We understand that, while she keeps an upbeat spirit, she definitely has her extremely difficult times. We also understand that this disease could take her from us. We choose to focus on the positive, while fully understanding the reality of the situation, to help her through this. We also understand that this will be a battle for her the rest of her life and plan to be there for her in whatever capacity she needs.
Some of us cannot be near her geographically so we keep her in our prayers and always in our hearts.
I can only hope that you all have, or find, a similar group, whether family or friends that can help you through this very ugly disease. You all will be added to my prayers. There is no pity here, only hope.
Great article. So many of us can identify with you.
Hi Hawaiian one! (A mouthful, isn't it?) Just recently, a relative of mine who knows I have MM, in seeing me again after a year, went on and on to say I looked so well, and was I really 60 years old, and what it my secret for looking so good. I of course thought that I would prefer to look older and not have a mortal disease, and I was hurt by her enthusiasm about my appearance.
While at the time of my diagnosis I was a wreck, and after the transplant a zombie, in the last year and a half my only problem has been a gastritis which wakes me up at night. Aside from that, I have energy and feel fine, so when we talk about my cancer, people either change subject or understate my condition.
But, I will tell you one thing I noticed. When I part from those who know about my disease, whether they are relatives or friends, they look at me in a deep way, their hugs are longer than in the past, the way they say "you take care of yourself" is more poignant than once. Somewhere, even if they refuse the idea that I am in danger, they know I am, and I find this very moving.
Tom, You nailed it with this. I'm going to share this cause I couldn't describe living with myeloma any better.
Thanks!
Aloha all,
Annamaria - Longer hugs are always a good thing! Thanks for sharing.
Terri and Stephen - I agree with your observations. There isn't much pity in this group. Speaking only for myself, I have been given the unique opportunity to face my death while still being healthy enough to carry on a normal life. I don't know how long it will last, but the perspective it allows me is unique. It's not that I am happy to have MM, but this requirement that I live for today is truly a gift. I really want to share this gift because its available to everybody. Don't pity me; grab a handful along side of me and take a huge bite!
Pat - Keep smiling! We are here for you.
Judy - Thanks for sharing your experience. Glad you get it!
Aloha,
Tom
Thank you so much for your column, Tom. Yes, it's our new normal, isn't it? A lot of us look good yet are managing a chronic, life-changing disease. You said it really well. I appreciate your column plus hearing from others in our mm community.
Sylvia
Everything you said in your article, I have felt. It has taken me three years to realise I am ill. It is the effects from the meds which have put me in bed so tired I haven't the strength to even shower. I have had awful side effects from the chemo and have had many stays in hospital. I am amazed how many people suffer the same. I have to say, I get the most amazing medical treatment and support from my consultant and my Macmillan nurses. I wish you all well.
Thank you, Tom, you put my feelings into words so well. Even though my family, friends and work colleagues mean well, I always feel uncomfortable at their lack of concern for my mental health and unseen struggles. Just because they see you out functioning like them, they assume everything is roses. Goes to show we are all pretty bad at expressing ourselves, so we just brush it aside and use non verbal. Receiving that long deep hug and genuine concern from people is moving, Annamaria. And does give you more strength and hope. Thank you too, other responders, I have also gained a lot of insight and hope from you. Lee L. (44 year old female diagnosed 5 years and in CR.)
An addition from my experience – Regarding the ones who say "you look well" and think you are not that bad, you are working, and you are raising kids and a household well ... they will say, before you can give any details, that they have problems too and their life is so stressful. They all have a common type - being very busy and self centered and wingey. If only they could be bothered to give it some though, they might realize we MM's have no use in us sitting at home feeling sorry for ourselves. We have evolved and want to be productive, active, goal achieving, and social too! We don't have the luxury of time. If I can I just steer clear of these naive shallow ones, as I feel so hurt. In the future I might just say, "thanks, not what you expected from a cancer." Lee L
Aloha Lee L.,
That long deep hug means EVERYTHING to me. I often get the quick switch to their problems just like you. It's the nature of many people. One of the things we gain with myeloma is our empathy for others. It scares me to wonder how much I was like those folks before MM.
If we all had just a little more empathy for each other, our world would be a different place. It's a worthy goal for each of us. I love your comment about being "evolved". That is a wonderful explanation.
Try to keep your chin up. I feel just like you.
Much Aloha
Tom
Cheers, Tom. I appreciate your columns and feedback
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