Myeloma In Paradise: Our Evolution
While I would love to get into a debate about the evolution of man versus the creation of man, that’s not what this article is about at all.
Instead, I would like to expand on some feedback I received in response to one of my articles. In a comment on the article, a reader wrote that those of us with multiple myeloma “have evolved.”
I found this comment to be especially on point. So much so, that I often think of it.
Let’s face it. We’re different than most folks.
We’re not better; we’re certainly not worse. Just different. How could we not be? Those of us who are still kicking have been, or are currently being, changed permanently. The same applies to our family and friends. They, too, have been changed forever.
You can obviously make the case that anybody’s life experiences change them. It’s what makes each of us different. With multiple myeloma, though, there are a number of factors that force an evolution of sorts that many of us with the disease share.
Before I was diagnosed with myeloma, I was a pretty typical 49-year old, middle-class guy in the United States. I had a great wife, two pre-teen sons, two dogs, two cars, and four chickens. I had been doing the same type of work for almost 25 years. We had a very large mortgage (typical in Hawaii) that we had become used to paying. We took a vacation somewhere most years and felt like we were living the good life even though we had to work very hard to keep up with everything. My friends, family, and enjoyment were important to me, but they were definitely dominated by my need to build financial security for my children.
Then I started to get sick. I began to have episodes of fairly intense abdominal pain accompanied by severe diarrhea and some fevers. After recently experiencing the difficult death of a close friend to pancreatic cancer, I was afraid of the worst and decided I needed to figure this out instead of going with my usual “wait-and-see” approach. While my pancreas was fine, nobody could figure out what wasn’t.
After almost two years of colonoscopies, endoscopies, barium-filled CT scans, stool tests (that’s a joy!), and hundreds of blood tests, still nobody knew what was wrong with me. This period was the first part of my “evolution.” After an adulthood of avoiding doctors, I had visited more of them more often than I thought was possible.
I had pretty much given up my search for the problem when I turned my care over to a determined family friend and excellent young doctor. She understood where I was at and started looking for unicorns. All I had to do was take more blood tests. Compared to a colonoscopy, I wasn’t complaining about the blood tests. Her determination saved my life.
The results of the tests she ordered led to a referral to an immunologist, which led to a referral to an oncologist, which led to those immortal words: “You have an incurable cancer called multiple myeloma.”
This moment didn’t make me “evolved.” This moment made me scared! What followed is what continued my evolution.
I immediately (literally – within two hours) decided to sell our home and downsize our lives so that my wife would not have to support our large house payment herself. Of course, this was a panic reaction to the fear of leaving my family, but many calmer months later it is indeed what we decided to do.
My multiple myeloma diagnosis was actually just the beginning of the changes I attribute to my evolution. Once I made it through the initial diagnosis phase and came to grips with what having multiple myeloma actually meant to me, I really started to change.
Knowing and accepting that my disease is most likely going to cut my life short has given me a new perspective. Once we have this upcoming expiration date, it forces us to prioritize what is important. My new priorities are the following:
My number one priority is to live long enough for my boys to become old enough to better understand and accept my death. Of course we are all going to die, but it’s much easier to digest the death of your father when you are 20 than when you are 11.
This new priority means that I need to happily accept my doctors’ care and do all I can to help them help me. This is a major change for me. I now actually accept the endless doctors’ visits, blood tests, treatment discomfort, and even the dreaded bone marrow biopsies as a new part-time job. I don’t want to do it, but I have to.
Number two on my priority list is to enjoy what time I have left with my wife, my children, my family, and my friends. I want us all to make happy memories together, and I want to show them how much I love them. I especially want my kids to see that this is truly what is important. It’s not the size of our house or our level of financial security that matter most; it’s how much love we can give away.
To that end, we sold our big house and farm, I have cut back on my work hours, and we have already had many fun family trips (our thing is to travel) and experiences together. Less time at work has also allowed me to spend more time on my volunteer projects, to more frequently visit my parents on the mainland, and to be sick when I need to.
My third priority is to enjoy what makes me happy personally. I rarely feel guilty now when fishing, hunting, or golfing on a weekday. This is my thing. It’s okay for it to be a large part of my life. It makes me happy, keeps me active, and assures me of multiple challenges that I can never master.
This is who I am now. Call it evolution. Call it a man dealing with a terminal disease. All I can tell you for sure is that I am not the same guy I used to be. I just wish it hadn’t taken multiple myeloma to get me here.
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. You can view a list of his columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Thanks, Tom. Excellent advice.
Hi Tom,
I hope you insist upon conscious sedation for those bone marrow biopsies. It makes it much more tolerable.
Great column, Tom. You rock.
Thanks, Tom, for such a thoughtful column. I see a lot of myself in your writing. Yes, as multiple myeloma patients and applies to caregivers as well, we have all evolved and have to re-prioritize our lives and decide what is important and what is just noise.
I'd like to share your column with everyone I know. You describe so precisely what I have been through since my diagnosis, beyond everything treatment related, which is what people usually ask about. But for me, treatments are what I have to go through to have a life to look forward to, while what you describe is what has really changed that life.
Thank you for sharing!
Aloha
Thank you all for such nice comments. Your encouragement keeps me scribbling these articles!
Much Aloha,
Tom
Regarding "the dreaded bone marrow biopsies", some advice that may help readers.
The first one I had was excruciating. I discovered, however, that pain is relative to the rate of draw. Slow is painful but bearable; quick to "get it over" is very bad.
Before getting on the table, I now deliver a lecture about it, whether they like it or not, and it is true.
Once an engineer, always an engineer!
Great piece as always.
Regards
Ray
Hi Tom. We have never met or spoken, but your thoughts and mine are virtually identical in many respects. I was diagnosed with smoldering myeloma exactly 7 years ago today (9/9/09), and I have managed to avoid treatment other than Zometa so far, but the diagnosis led me to alter my work situation (for the better!) and spend a lot more time travelling (with and without my family) and enjoying life while I can. Thanks for the column and best wishes.
Thank you for a great write up, it really hits home for me. Now that I'm just post transplant and have started maintenance, I'm struggling a bit to learn my new role and embrace my new life. If all goes well, I'll keep taking drugs not to attack multiple myeloma (so I'll watch for numbers to change for the better), but I'll take drugs to maintain a status quo and hope to never see a change. That seems a little tougher for some reason.
Tom thank you for sharing your experience. I read your story with interest. I had a few years of stomach issues, or bowel issue, or whatever you want to call it, before my diagnosis. Had several scopes, and they were telling me it was stress, or IBS, or some other "benign" issues. For me, I had a weird bleeding issue that was worrisome. Turns out I finally got diagnosed with myeloma when I ended up at the ER a few times when I got very anemic (passing out).
Did your gut issues settle after treatment? Mine were much improved though not perfect. I'm finding now I'm having issues again, and it just so happens I've relapsed. So could it possibly be a weird myeloma symptom, just not very common? I'm getting worked up again doing some different tests this time to rule out celiac disease.
Saw a gastroenterologist on Tuesday. Waste of time. She told me to drink 2 litres of water and take Metamucil everyday. I've already tried that; didn't help much.
Sorry for rambling. Have not heard of anyone else presenting this way.
What you said about your wife, family and friends – making happy memories, making sure how much the special people in your life know they are loved – is what I concentrated on when I was diagnosed with smoldering multiple myeloma. I also know that my sons would follow my lead, and it's important to me to show them the most positive way.
Thank you for sharing.
Aloha Ray - I agree, a slow pull is key. My first (and former) doc was no good at it. My current doc is pretty good.
Jason - There seems to be quite a few of us on a similar path. Carpe diem!
MarkW - I have yet to have my transplant, putting it off as long as possible, but from others here it seems to get easier with time. Hang in there.
lys2012 - Digestive issues are not typically associated with myeloma, except for the treatments. What I have suggested to my oncologist (and he said it sounds likely) is that my total lack of immunoglobulin A (IgA - which protects our "wet" tissues from disease) allowed me to suffer multiple colitis attacks where my entire digestive tract was irritated and swollen. Treatment has allowed my body to produce small amounts of IgA and these attacks have been almost eliminated now. Gastroenterologists have been completely worthless to me. They seem completely uninterested in figuring out what is really the problem.
Lois - Glad to hear that others agree with me. I think our kids will eventually see this time of our lives as most influential to them.
Sorry, I refused a bone marrow biopsy unless they put me out. They did. In this lifetime, we go through enough pain. A bone marrow biopsy, no matter how fast 15 minutes is, it's ludicrous to put anyone through it. Only my opinion, and remember we are hiring these professionals.
Gas and air worked for me. Brought the pain level down from intense to modest and entirely tolerable (and remote, if that makes any sense!)
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