Pat’s Place: Living With Survivor’s Guilt
It is an exciting time for multiple myeloma patients, researchers, and physicians. New treatment combinations and options are popping up left and right.
More treatment options mean most myeloma patients are living longer, and sometimes enjoying a better quality of life.
Most patients, but not all. Unfortunately, multiple myeloma patients die every day from the cancer itself or from complications caused by years of chemotherapy.
A fellow survivor recently e-mailed me about an article he read about a relatively young, stem cell transplant recipient, who died less than one year following his diagnosis. His question: “How can this happen in 2011?”
He wondered if the doctor might be at fault—or if the patient was given bad advice. Maybe he didn’t have access to the best, newest drugs. Perhaps he died from complications associated with his transplant—or was he just unlucky?
I responded “YES!” Any of those things may have caused his death. Apparently the article didn’t say.
Few would call a multiple myeloma survivor lucky. Only a small percentage of us live more than a dozen years after our initial diagnosis.
But I feel lucky. True, my myeloma is back and active again. But I am alive and still able to live a relatively normal life.
But I have friends who are enduring severe cases of shingles, peripheral neuropathy (tingling and pain in the extremities), and debilitating battles with weakened bones and disintegrating vertebrae.
I do feel lucky. And I feel guilty—let’s call it “survivor’s guilt.”
Why them and not me? Revlimid (lenalidomide) has worked for me.
But what about the gentleman who died less than one year after his diagnosis and transplant? What about another young friend of mine, who is in and out of the hospital constantly? Her myeloma is aggressive and relentless. Nothing seems to work for her.
I know lots of others in a similar bind. Maybe the drugs or transplant worked for six months. Maybe they didn’t work at all.
I have personally known a handful of myeloma patients who have died. That is really hard for me. Why them and not me? And why do I feel so guilty?
I would like to say I have the answer to squelching survivor’s guilt. The best I can do is to remind you to consider the alternative—and to try and make the most of the time you have left.
Writing and “giving back” works for me most of the time. Staying busy and trying to live a fulfilling life is always a good idea—whether you have cancer or not.
So join a support group. Give rides to fellow multiple myeloma patients who can’t drive. Volunteer at a rehabilitation center or nursing home. Do something special for a caregiver you know—maybe even your own.
Spirituality can also be comforting. Acknowledging that a higher power has a plan may help you feel less guilty about living while others pass on.
Rely on friends to remind you not to feel guilty. Heck, anyone—whether they have multiple myeloma, another form of cancer, or are in perfect health—can fall into the “trap” of survivor’s guilt.
Personally, I prefer to keep busy so that I don’t stay caught in that trap for long.
Feel good and keep smiling! Pat
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It is painful beyond words to lose relatively new friends with MM who don't make it. It is sometimes hard to be happy go lucky, doing well, while those we have come to have deep feelings for die from this disease. There is no simple, single answer as to why some survive and some don't, just like cancer is indiscriminate, it seems, in who it strikes.
Good article, Pat. I've made reference to some of this in things I've written, but I do think about this often: Those who have had such an extremely difficult time with treatment in terms of disease symptoms, toxicity to treatment drugs and other things; and those folks who do not survive very long. Cancer treatment is no picnic, and hasn't always been for me, but I count my blessings, I really do.
Lori-
I can always count on you to write a thoughtful comment about such things. It is one of the things I admire about you the most. You really think about life, death and living. Thanks for sharing- Pat
I know you have, Lou. I enjoy reading your column because--like Lori--you do take all of this so seriously and give it a lot of thought. Sometimes I think cancer survivors just hope it all goes away. I understand! But reality isn't always easy. I remember being puzzled early-on because I never read about what it was like to die with myeloma. I had to really dig to find much info about it. Guess I just wanted to be prepared. There is a place for "up and positive" and also for the not so great side of our cancer- Pat
Pat,
Myeloma can be so selective.
I always say "my illness, my body, my treatment".
That takes away any guilt I may feel.
Like you, giving back is important to me. Writng comments to articles like this and myeloma blogs is a good way of support and giving back.
Sid.
Nicely put Sid, I like that.
Pat, I applaud you for being prepared. Confronting the hard stuff, makes it easier to get on with it. At least that's my take on it. Early on in Dave's dx, I referred to it as Guerilla Warfare! When those dark thoughts would creep up on me, I would grab my metaphorical oozie and go in and have my skirmish and get out quick!
For as long as we do survive I think we can inspire others as those before us have inspired us.
I have survived MM for 7+ years. I feel lucky that I have a weak form of MM. For the first months I only took dexamethasone. For the seven years I only took prednisone.
Either my MM was a weak form or I have a strong system. I believe it is the former. I believe that everyone's MM is different in strength.
Recently the prednisone stopped helping and I started Revlimid. I am now in remission again.
I DO NOT FEEL GUILTY. My surviving has not taken anything away form anyone else.
Why should I feel guilty? It is not rational to feel guilty if you are not harming others. It is just an emotional reaction.
Short and sweet, straight to the point, no BS. Thanks for this, the timing is pretty amazing.
Howard-
I'm glad you don't feel guilty. I'm certainly not trying to make anyone feel that way. Trust me--I don't stay awake worrying about it! But it is difficult to go to hear about a friend who has just died of mm. Hope you continue to do well! Pat
I am coming up on two years since diagnosis. When I hear about someone who died within a year after diagnosis I assume they had a high risk form of the disease. My hope and prayers are that newer drugs currently in the pipeline will be effective against the more agressive forms of the disease.
Hi Matt-
You are correct. And sometimes our fellow patients die from unrelated causes--or some other cause which may or may not be myeloma related. Still "shakes me up" every time. Cold splash of reality- Pat
Pat, I was diagnosed with stage 1 mm on nov 10, 2010. I am a 44 year old female with 3 kids and 3 retail stores. This was a huge blow to me considering I had no symptoms. I was buying life insurance and was put thru some basic tests for that. The tests showed protein in my blood which sent me on a journey that I never expected. I have just completed 4 rounds of dex and revlimid. I will harvest stem cells in a few weeks for a transplant in the future. After this the doctors want me to do 4 more months of dex and revlimid adding velcade. I am so confused about this disease because I feel so good except when I have to take the meds. I have no lesions or piting of the bones. Just mild neuropathy in my two toes on left foot and know my right hand. But not everyday or for very long. Thanks for having this website for all of us that are just starting on this medical journey.
Such a difficult thing to go experience, Janene! So sorry... I understand--been there--done that! Even the fact we both owned multiple retail stores.
Keep in mind, lots of newly diagnosed cancer patients don't feel bad. But if you don't take meds, can get worse.
Email me if you like and we can share info. Too much to go into here, don't you think? Good luck- Pat
Hi all,
I can totally relate to Pat's comments. I was diagnosed almost 9 years ago and have had a "relatively easy" go of it--compared to most of my MM friends. I lost my best friend in Oct. --an amazing woman who struggled throughout her almost 9 year battle. The best thing I can do is take care of myself and share what I have learned on this challenging journey!
All the best!
G
Gerrianne-
Sorry for your loss--but so glad you are doing well! Good luck! Pat
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