Mohr’s Myeloma Musings: A Family Affair
It is easy to become self-centered when diagnosed with a serious illness like cancer. That self-centeredness becomes even more intense when the cancer is considered incurable, as is the case with multiple myeloma.
It's easy to give someone a pass in such a situation because it is completely understandable how, when confronted with their own mortality, they would tend to look at things differently.
As I reflect on the four years that I have lived with multiple myeloma, I realize that my concentration on learning about the disease, dealing with the different treatment regimens and their side effects, and generally overcoming the challenges of living with multiple myeloma have made me so self-centered that I have given little thought to how being a multiple myeloma patient has affected my family.
This realization came to me as I considered the situation my sister is currently going through. Her youngest son, just 32 years old, has been diagnosed with pancreatic cancer – a malignancy with a reputation of being extremely aggressive and having a low survival rate. In my daily conversations with my sister, it is obvious that these facts are weighing heavily on her and her family.
While my nephew’s situation is far more serious than mine, I can't escape the fact that I have given scant attention or concern to the impact my multiple myeloma has had on my family. Conversations with my family since this realization have been enlightening and, in some ways, deepen my regret for not making their concerns and worries a priority of mine.
One thing my family members all agreed was difficult for them to deal with after learning of my diagnosis was a fear of the unknown. Like most people, they had never heard of multiple myeloma. They understandably were unnerved that this cancer, unlike most cancers, couldn't be burned away through radiation, destroyed with chemotherapy, or cut out surgically.
Like many, both my son, who was 16 when I was diagnosed, and my daughter, who was 20, associated the fact that multiple myeloma is incurable with it being a terminal condition. My son admitted that such thinking suddenly made those things that he and I did together more meaningful and even stirred a desire in him to do more things together.
My daughter, who was away at college when I was first diagnosed, shared that the situation caused her to re-examine her goals and benchmarks for life, which she probably wouldn't have done had the diagnosis not occurred. I think things were tougher for my daughter because being away from home left so much to the imagination. We weren't interacting personally every day, so she couldn't see that, in reality – at least in the early stages of my disease – the disease wasn't really having much impact on my life.
My wife on the other hand – in keeping with her eternally optimistic nature – refused then and to this day to use the word “terminal” to describe my disease. She also dismisses any notion that the data suggest I will live but 8 to 10 years since my diagnosis four years ago. I believe that her attitude has rubbed off on my son and daughter, as evidenced by the fact that my daughter now uses such terms as our "new normal" to describe the dynamics of our family life.
I have shared my experiences with this disease – from an initial watch-and-wait approach, to induction therapy, an autologous stem cell transplant, and my current maintenance therapy regimen – in previous columns.
It won't be a surprise for anyone familiar with multiple myeloma that everyone in my family agrees that the most challenging times since my diagnosis were my steroid rages on dex days during induction therapy, and the autologous stem cell transplant.
This whole reflective exercise with my family has had its lighter moments. We laughed at their recollections of my rants and wild mood swings while on dexamethasone – how they would all quietly slip out of the room when it got to a certain level, and yet still hear me from different parts of the house continuing my conversation with myself or the TV if it was on. My son’s emergency trip to Walmart with his girlfriend to purchase extra underwear for me during the early days of my stem cell transplant was something I was completely unaware of. To hear him recount that trip evoked even more laughter.
So what lessons can one learn from my professed shortcomings?
For any newly diagnosed multiple myeloma patient, as understandable and excusable as it may be to become totally self-absorbed in one’s personal situation in battling this disease, remember that having myeloma is a family affair.
While your loved ones may not be experiencing the physical challenges you are going through, they suffer in ways that can’t be seen. Find a way to not only find out how they are suffering through your suffering, but be a caregiver to them in addressing their needs while they care for you.
As a family member of a multiple myeloma sufferer, don’t be afraid to share your anxieties and concerns with them. On those few occasions when my family talked about this disease, I found it therapeutic and also a welcome change to be caring for others rather than being cared for.
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 .
Thanks Steve for the family news. I am so sorry that your nephew has pancreatic cancer, which I think is one of the worst cancers to have. It was an eye opener to me a few years ago, when I had a the stem cell transplant, to realize that my children were now looking after me! For so many years it had been the other way around. We are a close family and try to look out for each other. My myeloma has been only one of some other health problems we have dealt with over the last few years. I am now in a four generation family, and we do have problems sometimes. I am grateful to be well enough that my health issues are not overwhelming to the rest of the family (I hope!).
Excellent column Steve, and I couldn't agree more with you.
I so enjoyed your column Steve. I too have been four years post transplant. I am doing well, my oncologist has not put me on Revlimid. But still at the back of my mind is this terminal cancer that I have. Why do I worry about relapse? Sometimes my family doesn't understand that I feel this way, and that I have to put my energy into moving forward. I find this hard.
Great article. Coming up to year 2 post stem cell transplant. I learned through the induction, harvest and transplant that my dignity went out the window and I welcomed whatever care I needed. I was taken off Revlimid as it shot my numbers too low without complete recovery. So, I am on a research project under observation. I too often think of relapse. I still remain very positive and accept the things I cannot control. Thanks again.
Very nice column Steve. A great reminder. I'm early in my journey and just preparing for my first transplant. My family has been great and supportive, but this is a good reminder of how things will go as my journey continues. I think of this not only for family, but friends and co-workers. I appreciate everyone's prayers and best wishes, but I don't think many grasp the idea of a chronic/terminal condition. I'm lucky at this stage to look and feel healthy and I hope a few months following the transplant I will again, but of course, I will always be in treatment waiting for a relapse and starting over. It is learning how that impacts those closest to us that could be challenging.
Nancy - I think an important thing to remember is that even though we are so reliant on our caregivers, that we can also care for them. It just incumbent upon us to determine what that care is and when to provide it.
Susan - I appreciate your kind words.
Diane - You are so lucky to be treatment free four years after your ASCT. I don't think it's possible not to worry about relapse to some degree. Sadly, it is still inevitable, but that doesn't mean that it has to control our thoughts and our outlook for the future. While some may say it is just a matter of semantics, the fact that you are four years past ASCT is proof to me that multiple myeloma is not terminal in the sense that death is imminent. It will be 2 years from my ASCT in June - I will be thrilled if I can get go 4 years without relapse and I am on a maintenance regimen of Revlimid.
Terry - Your use of the phrase "losing dignity" through the harvest and transplant process is so accurate and, like you, I welcomed and appreciated any care I received. In my mind, staying positive is the only real choice to consider.
Mark - I hope your transplant goes well and that you are fortunate enough to experience the positive end results that I have. While the actual transplant was really tough, my recovery was very quick. I was able to return to work, albeit on a half time basis, five days after being discharged from my hospitalization, which was 16 days post transplant. Good luck!
Thanks, Steve, for your thoughtful and helpful column. I agree that being mindful of family members' fears and wounds is of top importance; in fact, in some ways I think being "the caregiver" is emotionally harder than being the patient. The caregiver, especially a wife or husband, longs to "fix it," and tends to be plagued by frustration at not being able to do enough.
I was diagnosed over six years ago with a very ornery form of myeloma; have had all the therapy combos, lots of radiation (including some done with a nuclear accelerator!), two auto transplants and an allo (donor) transplant, and am happy to still be alive and kicking.
I have never liked the expression "terminal." When you come right down to it, we are all "terminal", and not just cancer survivors. Even the term "incurable" is beginning to waver with regard to myeloma, with all the exciting new therapies being developed. I don't think I am cured, but have great hopes for future myeloma patients.
Thanks again for sharing your thoughts on all of this!
Great column, Steve! It's important for us to look outside of ourselves. Myeloma is definitely a family affair.
I also agree with ChartyB's point that in some ways being the caregiver is more emotionally difficult than being the patient. There have been many times that I've thought how glad I am that I am the one with multiple myeloma instead of my wife or one of my children.
I'm very sorry to hear about your nephew's situation. I hope things work out ok for him.
Thanks again for another excellent column.
Mike
ChartyB - For all you have been through (2 autos and an allo), you certainly have a positive and optimistic outlook and your post should inspire readers. I especially respect your view on the use of the word terminal as it relates to multiple myeloma.
Mike - I like your use of the phrase "look outside of ourselves". Being an old athlete and coach, I liken having multiple myeloma and being a caregiver to being a player or a coach. I found being a player far easier and less stressful than being a coach because I had more control to what happened in the contest. I think a caregiver feels like a coach in that they have have an impact on events but ultimately it is the patient who determines what happens.
Hello Steve,
What a timely article. We just had a family dinner with my two sons where we talked about multiple myeloma. Five years of the disease, since ASCT, 3 years of relapse with treatment after treatment. Yet remaining relatively healthy.
New change is that I now have bad values. How my family is responding is all over the place. Mark my husband is now able to talk openly about his fears. This helps me.
My oldest son doesn't want the data, he just wants to know how I'm doing and what can we do. I suggested a hike and a concert. My youngest son likes the data but is not asking many questions.
I know when I hear their concerns it takes me out of my own self and I feel a full fledged member of the family. Good column.
Maureen Nuckols
Steve,
Thank you for such a great column. I'm so sorry to hear about your nephew. I hate to hear of anyone diagnosed with cancer, and especially where the patient is so young.
As a caregiver and spouse to my wonderful husband, I share your wife's philosophy. Terminal isn't a word that I allow in my myeloma vocabulary. I pray daily that a cure for myeloma will arrive in time to give us all our futures back.
My very best to you and to your family.
Maureen - I appreciate your comments and am sorry to hear that your values are going in the wrong direction. I find that my family pretty much reacts "in character" to our new normal.
Tabitha - While I am probably the least qualified to comment on the potential cure for multiple myeloma, it certainly seems that we are much closer to that cure than we were four years ago when I was diagnosed with the disease.
Thank you so much, Steve, for describing the "new normal" at our house when dex was involved.
The most decadent thing I have done for myself since diagnosis and transplant has been enrolling in palliative care. These wonderful multi-focused professionals have improved my mood and understanding about so many parts of my health care. My sister has cancer, as does a very dear friend, I feel physically beat up with every post-transplant Velcade treatment, and I have lost much independence. The various specialists at palliative care have done wonders in helping me put everything in perspective. They have helped my entire family better understand our new normal, and raised all our spirits by learning to reframe all our roles. Columns like yours are so healthy for each patient to realize we are not alone.
I am so very grateful for your sharing. Best to you and all your supportive family.
Steve
My husband has multiple myeloma. Thanks so much for the information in your articles. My personal feelings are you learn much more from someone who has multiple myeloma than from someone who is treating but does not have or never had it.
My husband was taking 25mg of Revlimid but it was reduced to 15 mg because he was retaining fluid in his arms and legs which caused a weight gain of 15 lbs.
Once again I just want to say thanks so much.
Betty Baber
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