ME vs. MM: Humble Thyself
As I approach the end of my induction therapy and the clinical trial I've been on, I find myself reflecting on the past two years since I was diagnosed with multiple myeloma.
One of the consequences of the diagnosis that I've come to recognize – and which I most likely will have to accept even more in the future – is how humbling dealing with cancer can be.
Sure, there are the little things, like figuring out how to manage a 24-hour urine collection that includes a full day at work, or having to answer questions about my sex life during a Revlimid (lenalidomide) survey, or lying on my stomach with my pants down while several people look on during a bone marrow biopsy. And while I haven't personally experienced it, I would image hair loss might fall into this category as well (though some people might consider it more significant).
While these experiences are all embarrassing and humbling to a degree, I can get through them with minimal injury to my pride.
The bigger issue for me has been how I have had to accept, or may have to accept, changes that are contrary to my basic personality. To understand what I mean, you first need to know a bit about me.
First, I have always been very self-sufficient. I don't like to be dependent on others or feel indebted to others. I am the one who opens doors for others and is uncomfortable when someone opens a door for me. I really have a hard time accepting when someone offers me a gift or offers to pay for a meal. When someone offers to help me with a task, I generally tell them (politely) that I have it under control and don't need help. I do my own home repairs because I don't want to pay someone to come in and fix something I'm capable of fixing myself. The paradox here is that I have no issue with offering to help others at any time.
Second, I also tend towards being a perfectionist (my family would argue that there is no tendency about it; it's a fact). Consequently, it's very difficult for me to overcome the desire to do things myself, and when I do, I am generally dissatisfied. I restack the dishes in the dishwasher if I don't like the way they are arranged. I will repack the car trunk to optimize the storage space. I will spend as many hours, days, etc. as necessary to make sure a task is done just right. I do my own home repairs because I don't think someone else will come in and do the work to my standards or as well as I could.
Third, I grew up embracing the "strong male" philosophy. Guys don't show feelings, we suck it up. We play contact sports, we compete to win, we are gladiators. Even though I'm 54, mentally I tend to place myself in my 40s, and I never completely lost that sense of immortality that accompanies youth. Over the years, I've softened somewhat, but I still feel that underlying need to be strong, to provide for my family, and to be there for them.
As they say, though, pride comes before a fall - or in this case, some of my more arrogant characteristics are crumbling around me.
With the coming of cancer, there are concessions that I have made and will continue to make. Cancer has taken a toll physically and mentally. Between doctor's appointments, treatment, not always feeling well, etc., cancer limits the time I have to do things. I have had to let go of some of who I am, and will no doubt have to do so even more in the future.
I no longer work as long or as hard as I once did on physical tasks. I don't seem to get as much done on my to-do list (though if I'm honest, my list always seems to grow at least as fast as I take things off it).
I have learned to accept help from others, even though I may prefer to take care of something myself, and I remind myself that everything doesn't need to be done to my exacting standards.
I find myself sharing my feelings more often. It's easier in these columns or on my personal web page, but I also share more in relationships with my family and friends.
I've also probably shed more tears in the past two years than I did in my entire previous 52 years.
My concessions to date have been few and not too severe. However, I do wonder what the future will hold, and I fear eventually having to depend on my wife or family to take care of me.
So two years after my diagnosis, I'm not as self-sufficient, I'm not as perfect, and I'm not as manly as I once was. Instead, I am more humble, and I find I must depend on others more than I would have in the past.
But maybe that's not such a bad thing after all.
Peace, and live for a cure.
Kevin Jones is a multiple myeloma patient and columnist at The Myeloma Beacon. 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 .
Thank you for such an honest look into your experience, your life...and what it means, have become. My battle is 13mos old. I consider myself a newby. The struggle has been like nothing I've ever encountered. The procudures, medications.... medication side effects, etc...
I am forever changed...mentally and physically. I, like you, am humbled and incredibly grateful. #newbyfeelinbetter
Hi Kevin, in SOME ways, you have probably become more self sufficient, since you have had to handle all of these tests, treatments etc. by yourself. Nobody could do it for you, although I am sure you have a great support group! I felt the worst when both my parents and my children, as well as my husband and friends, were all helping me out. I felt quite helpless for a while but had to realize that its OK to accept help when one needs it. Thankfully that didn't go on for too long a time, and now am more or less back to 'normal'!
Someone I know had a funny experience with the 24 hour urine test. She had a meeting that day out of town, to do with her work. Yet she had to get that test done! So she had a rather large tote bag with her all day and no one else was any the wiser! We had a good laugh over that, since I had to do that test more than once also.
Hi Kevin, I know exactly how you feel. I, like you, am self dependent and a perfectionist. I live by myself, so I do things as I want. I have become less worried about things not being perfect, but the one thing that bothers me the most is that, I cannot defend myself in case of an altercation. I was recently cut off by a driver and yelled at him as we were at a red light. Then I thought, what if he gets out of his car and comes at me. What would I do? I thought I would have to wind up my window and lock the doors and cower like a coward. As you know, are bones are weak and any kind of a intense physical altercation could break many bones. Don't get me wrong. I am not a fighter, but the fact that I cannot defend myself bothers me immensely. This might sound funny to some, but a man not being able to defend himself, in case something happens, to me, is very hard to accept.
I can't even imagine how difficult it is for you men. I'm a little grey-haired lady (well not exactly little) and I see the glances I get sometimes when I ask for help moving 10 lbs. of potatoes to a grocery basket then to the check out line. I find myself mumbling something about no-more-than-five-pounds. This must be doubly hard on you men. I offer my sincere sympathy.
P.S. Actually most people are very helpful. It's just embarrassing to ask.
Hi Kevin, nice column that hits home for me. When I progressed to active myeloma this Spring, I really felt like crap...anemia, recovering from an embolism, etc. My brother had to cut my grass, etc. I love to garden, rake leaves, shovel snow, etc. It was a big blow to my self-esteem to rely on others for my chores. After I started treatment, my blood counts came roaring back and now I feel almost normal again....I just hope it lasts! Terry L.
The diagnosis has a pyschological effect that, at least for me, is worse than the physical impact. So, for example, even now I am much more hesitant about exercise, although I have no real reason to be. And I don't like that at all.
The reality is that some patients can live essentially long, normal lives even with low levels of disease. So if you are low risk or in sCR, you should take a long-term perspective. But flying in the face of such normalcy is the trumped up urgency and stress of every single blood test, zometa infusion, or prescription. I think most people -- myself included -- are way to obsessed with that, and the doctors know it!
Live today without fear.
Kevin,
My approach has been to "fight it". I balk at the limitations and push myself physically to "not be limited". (Sometimes less effectively than I would like.)
I have not found myself physically limited except on the first day or two immediatly following my dex. Did I say I hate DEX!!
I do however find myself sharing my feeling more and have been become more self reflective. I have also turned back to my faith as I now participate in our church choir. Finally I have reached out to more people building freindships and trying to experience "life" more.
Cancer has a way of removing the smoke screens so that you can focus on what is important.
Ron
sandra,
In some ways, I'm not sure whether I'd consider 13 months a newby or not. There's a lot goes on in that first year that as you say, most of us have not encountered before. While it's been humbling, I have also found strength within me that I didn't realize I had (maybe I'll explore that in a future column as a counterpoint to this one). Good luck.
Nancy,
You're right. As I mentioned in my response in my response to Sandra above, I've have discovered strength within myself I didn't realize I had. The helplessness and dependence you mention is exactly what I was meaning in my column. It's so hard to have to depend on others like that. By the way, I would take my jug to work in a cooler and just tell people it was my lunch if anyone asked.
George,
Since most people afflicted with MM are in their 50s or older, I would expect a lot of us may have a similar predilection towards being self-sufficient, strong, providing for family, etc., just having been raised in that era. I am still in good enough shape that I hadn't considered the implications for defending myself, but I could see that being issue if the disease progresses.
Jubyanne,
Being strong and healthy my whole life, it's difficult, and as you indicated a bit embarrassing, to admit I need help. However most people are very friendly and helpful and probably don't think much about it. I think this is a personal issue and I just need to get over it.
Terry,
It would be nice if we could imagine the situations being reversed. If family or friends were in need, I would not think twice about helping out and would think nothing less of them. That’s what family and community is all about.
Dan D,
I also find the psychological aspect worse, particularly since I haven't been significantly affected physically yet. I actually take very little precautions with my physical activities - but that's doesn’t mean it's not always there in the back of my mind.
Ron,
I think it's great that you've removed some of the some screens. I think we all start focusing more on the important things in life, including community and friendship. As I said at the end of the column, opening up and sharing can be a good thing.
Regarding "to do" lists, a friend recently posted on Facebook "First thing on today's to do list, copy yesterday's list". Sometimes we have to laugh at our "new normal".
Kevin, I think all of what you write here depends on your definition of "manly". I am a women, and very much identify with everything you have written. I was diagnosed about 2 years ago, and since then have lost a lot of my physical strength, coordination and ability. I was very strong and agile before I got sick; always took care of myself and others, and could fix almost anything. I was an artist who did a wide range of different things and often large things. I am still an artist and a women, but everything is different, and I have had to struggle with my abilities, or lack of, now. I work much smaller, and the perfectionism of an artist had to be re-evaluated. Before I got sick there was nothing wrong with me physically...nothing. Low blood pressure, low choleresterol etc. I gardened heavily, with having an extremely large garden. Now I do no gardening, which I hope to do a little in the future. The hardest thing is that I need quite a bit of help now, I don't even have a car anymore...money and cancer...now on disability etc. I cannot find or get the help I need. I think that the friends I had are not used to me needing any help, even though I have voiced differently. So I tend to spend my time alone, struggling to take care of what I need to do! Friends have avoided the new me, where as I have learned to embrace myself, keep fighting and struggling, as I have just had a relapse and am starting new treatment again and do not know what that will be like.
Here's the best to both of us, that we learn more to accept life on lifes terms, and not on our own demands or terms!
Jan
Holt,
Thanks for the humorous perspective on the to-do list - it's actually a great way to approach it (i.e., get to it when we can, but don't stress over it).
Jan,
I definitely didn't intend to slight the female gender. The stereotype I used was common for my generation growing up, and useful to get my point across. However, as you indicate, not being as self-sufficient and able to do the things we used to is a problem we all face. I am so sorry to hear that your friends have had difficulty adjusting to your new normal. I hope they can come to terms with it as you have, and that you get more support in the future. I am also sorry that you have relapsed, and hope your next round of treatment is successful.
Kevin, Thank You. You've nailed some of those 'manly' feelings of self-sufficiency, and pride that so many of us feel, and makes us so strong and dependable. I also struggle daily with no longer being the pinnacle of strength in the family. No longer being validated by being the one everyone relies on, and the one that everyone turns to when decision and action needs to be taken.
Thankfully, my BMT has been succussful, and I have a new normal, and a new beginning for the 'first day' of the rest of my life.
At a minimum, you clarify that we are not alone, and our families are not alone in our struggle. You help us see and reconnect with 'joy' that defines daily life.
Again, thank you for saying in a few paragraphs the feeling and emotions that, at least I feel, and I imagine, many others feel as well. Today, Christmas, I pray that everyone take a moment to breath deep, recognize the many examples of love around us, and be at peace with the life we live in, and that we have the power to make a positive, incremental contribution to the lives of others.
Paul,
Glad the BMT was successful for you. Hopefully you will find good balance between manly and humble in your new normal. I think you make a good point that by being a bit more humble, perhaps we connect with family and friends and see a bit more of the love around us (how's that for an 'unmanly' observation).
Nice writing, Kevin.
You know, I betcha if you put all of the MM men that have responded thus far to your article in a room together for purposes of support, myself included, we'd each be offering help to each other and accepting help from none. LOL!
I guess we'll all need to work on understanding that accepting help from others can be a kind of strength in and of itself. Besides, we all know how good it feels to help someone else...maybe we should be more generous with allowing others to feel good in that sense as well?
Best,
Steve
Steve,
I couldn't agree more with your observation on puuting the MM men in a room - glad to see you sense of humor is intact.
I was diagnosed in May 2012, and have been through three different therapies. Velcade, Revlimid, a coctail of various drugs given in a five day stay at the hospital, and now Revlimid, Krypolis, and dex. My MM was active refractoral and is just now responding to treatment. I had 60% MM when started and now at 27%, but still have a bit of a journey left to make it to the less than 5% level required to be accepted for a STC. I see mention that patients are still working while doing their treatments. My doctor, and the doctor from the STC center has had me off work since May, and am now on LTD, which is a huge financial burden. Is there a reason why some patients are allowed to continue work and others not? I am like you and have never relied upon anyone, and have worked hard all of my life, and not being able to go to work has really been humbling, along with my coworkers not understanding the difference between the cancers. I feel that staying actively busy, like going to work, could help with the mental aspect of worth. What are your thoughts?
badboy61,
I will share an experience that happened to me earlier this year. My treatment at that time matched yours, Velcade, Revlimid, and Dex. I thought I was feeling great and was two weeks away from the end of my third cycle, with an auto transplant pending. I fell off an 8' step ladder in my garage the day after receiving the Velcade, landing on my tailbone, cracking my scull on the cement floor. I suffered a brain bleed and spent days in ICU. The recovery delayed my treatment by a month. I thought that I was absolutely fine, but I wasn't!
Since then I have had an Auto Transplant, with success, followed by an Allo Transplant in November which I'm currently recovering from. Being on LTD is a challenge, being restricted to staying at home to stay healthy becomes frustrating. I'm thankful everyday that there are options for MM patients like me, and focus on getting through each challenge, one at a time.
I hope that things continue to improve with your levels.
Kevin,
I am an "old timer" as I have been fighting this disease for almost five years and have been in remission for about four years. I am High Risk.I believe that I am cured. I have not been told that but that is what I believe. I have had two stem cell transplants with associated neutropenia. All my hair fell out both times. Kidney failure initially and two weeks of dialysis. You don't want that. It was the only time that I felt discouraged. I cramped and I cried. I now get sick with coughs and colds more easily. For that reason I had to retire from my dental practice otherwise I would have stayed sick most of the time. My wife is my caregiver. She is fantastic. Way more skilled than me. Now I take Velcade weekly and Revlimid on days 1 thru 20. My care is delivered here in Shreveport and directed by UAMS.
Here is my advice for you regarding your reluctance to accept help from others. Of course you have experienced that beautiful feeling when you unselfishly serve another person expecting nothing in return. Who feels better for the service, you or they? I bet your answer is that you feel the best of the two of you. This is the paradox surrounding doing for others. They receive the good deed and you feel super because you were allowed to get the focus off of yourself for a moment and truly be unselfish. Thus you receive the benefit that God intended. I believe it is called a blessing. Here is the deal, when you refuse to let people serve you then you are very selfishly denying them that blessing.
Montie
badboy61,
I think the level of activity and work that can be maintained depends on what symptoms you have, and the effects of treatment. Obviously, the more your bones and kidneys are affected, or the more you're affected by treatment, the less you'll be able to do. Skeletal x-rays and a bone density scan showed I had no lesions or loss of bone density. Calcium levels are fine, and I have no kidney issues. Treatment causes some fatigue, constipation, and a bit of chemo brain, but nothing I can't handle. Consequently, my doctor has placed virtually no restrictions on me. I basically just monitor how I feel and don't push too hard. I've also come across information that indicates staying active, exercising, and maintaining good nutrition improve your ability to fight the cancer.
RickK,
Sounds like the Velcade may have contributed to the fall, due to fatigue perhaps?
Did your doctor indicate the damage from the fall was caused, or at least worsened, due to MM? Would you have probably suffered the same injuries even if you didn't have MM, in which the injuries basically caused you to delay your transplant?
Regardless, I hope you respond well to the allo transplant.
Montie,
Sounds like you have been through a lot in five years. I sure hope you are cured, or at least able to manage it as a chronic illness. Your point is well taken regarding unselfishly letting others share the experience of helping. I have been involved for many years with Habitat for Humanity and can definitely attest to the fact I get as much or more out of it as the new homeowners do.
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