Pat's Place: What Would I Do If I Didn't Have Multiple Myeloma?
This week marks an important milestone along my multiple myeloma journey. It has now been five years since I was first diagnosed.
Five years! Not bad, considering the median life expectancy at the time was less than four.
But that only sets the stage for the topic of my column this month.
Several days ago, a “myeloma friend” and I got together to watch a spring training baseball game. What a beautiful setting along Florida's Gulf Coast! The Toronto Blue Jays were playing the Minnesota Twins. We had great seats just behind the Twins' dugout. It was warm and sunny. The perfect way to forget about having cancer.
But on the drive home, my friend asked this question: What would I do if I didn't have multiple myeloma?
A thought-provoking question that definitely snapped the idyllic mood. But as I began to ponder the possibilities, I soon realized that after five years, I almost don't remember what it's like to have a “normal” life.
For most of the past five years, I have been battling bone pain, side effects caused by continual chemotherapy – including a pulmonary embolism and chronically low blood and platelet counts – weekly doctors visits, tests, surgeries, a secondary cancer most likely caused by a compromised immune system and a stem cell transplant.
Oh my God! Multiple myeloma is my life! And that doesn't even take into account the fact that every day I spend much of my “free time” writing about multiple myeloma...
But to not even be able to remember what it's like to not have cancer is a stunning admission for me.
Things became a bit hushed at that moment driving home. Honestly, I almost cried.
Why did I get so emotional about this? What's the big deal? After all, the fact that I have multiple myeloma isn't exactly news by now.
But I suddenly realized that I have used selective amnesia over the years to protect myself and to make me feel better. Because the loss here is immeasurable. It's incalculable.
To think that an otherwise healthy and active man in his mid 50's is now being forced to slowly watch his life tick away, saddled with so many limitations, would be considered tragic by many.
Yes! However, I believe I have made the most of a bad situation – and I have no regrets.
Emotionally, being able to help others better cope with their loss fills me with a sense of purpose and well-being. Physically, I am able to work around my worsening peripheral neuropathy and chronic fatigue well enough to do some light housework, travel from time to time, and continue to do what I love most – writing.
But the things I have given up so easily to live this new life – my job; an active life jogging, golfing, and skiing; working long, but rewarding hours around the house and in the yard – it's all gone, and I will never get it back.
So what would I do if my multiple myeloma was instantly gone? If I were in a long-lasting remission like survivors with so many other types of cancer? Or if I had never even had cancer at all?
I could still work full-time. I could recreate and be active again. I could hike the rain forests of the Pacific Northwest. Shovel snow. Coach and play basketball again – or maybe tennis. I could travel to Europe. Donate blood. Maybe adopt a child...
Yes, the loss is incalculable. But I'm a “glass half full” kind of guy. I still have so much to be thankful for.
Even so, forgive me if I take a few moments now and again to mourn the loss of my former life – and to try to remember what it would be like if I didn't have multiple myeloma.
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published at The Myeloma Beacon, please contact the Beacon team at .
The one phrase that hit me was "selective amnesia"...THAT explains why I was so shocked when my husband finally succumbed in January this year. He was nearly 9 years of living with the horrible disease. He, however, did not give up anything except golf and horseback riding. The plastic "fix" in his spine would not allow such dangerous activities. He did work every day even when he had to drive 3 hours to Emory for tests and treatments. He would work the morning or the evenings or whenever he could get his hours in. We therefore had a somewhat "normal" life. Even at the end when the extramedullary disease became so evident. I just wasn't ready. I had selective amnesia as I'm sure he did too.
I thoroughly enjoy your writing. Please continue. My thoughts are with you and your family.
Eva
Pat-
Thanks for the honesty. My story closely parallels yours. Sometimes when I read about MM victims running marathons I wonder what is wrong with me....Am I "lazy", why don't I have the energy to play tennis or even jog after 4 years post SCT? I have about 3 "strong" hours a day- enough to play golf with a cart but that's about it..........The usual side affects have been exhausting.
Dear Pat,
Your column just came in and I decided to read it right away. Not me, but my husband has MM, and your situations are so similar and recognisable. There are so many things that he no longer manages to do, but we count ourselves lucky with the things he still can do. Sometimes the whole situation makes me a bit emotional because the 'limitations' graduallly krept up on him and it takes a while before you come to realise that 'another thing will be gone' forever. Luckily, after having lived with MM for 6.5 years - with short-term remissions and many treatments, hospital visits, sometimes weekly blood transfusions etc. - he still manages to play the odd round of golf and moans about bogeys and missing his putts (that's the worst ;-)) Next he needs a good few days to recover, all happy and fully satisfied. But I also miss my 'old hubby' and, as a partner, mourn the loss of his former life. MM patients - and their partners ... I've never seen a braver bunch in my life. As you said, feel good and definitely keep smiling!
Happy Easter holiday.
Regards,
Lia
Nice piece, Pat.
I think that all of us, from time to time, may forget (to our detriment) that it's absolutely necessary to mourn our losses while we work to find the best way forward to our "new normal".
I believe we need to remember that our losses are real...the grief is real...and the emotional pain that surrounds the mourning process is just as real as any physical pain we may experience from MM and its associated medical treatments.
Sure, others may have it worse and some may have it better...but our grief is our grief and only we, each of us indvidually, can discover how best to constructively process the pain that comes from loss of the "old normal".
As MM patients we go through many difficult and challenging treatments in the hope of alleviating many of our symptoms...it's my firm belief that "consciously processing" our grief is no less important for maximizing our emotional health.
Thanks for sharing your thoughts on this very important topic!
Steve
Pat: Your column has struck a deep chord in me; I will be thinking about your question for a long time. Like an eclipse, MM does seem to blot out the view of a normal pre-MM life. As you say, those memories of easier times are sometimes painful because of the feeling of profound loss. I admire you immensely for taking what MM has dealt you and turning it into a powerful outreach to others trying to figure out how to cope with this diagnosis. In the meantime, maybe I'll run into at a ballpark someday as we put MM on hold for a couple of hours. You tell us to keep smiling, I'll tell you to keep swinging for the fences!
Hi Pat....being a 'glass half full' guy is your way of saying that you are an incurable optimist! Although you may have lost physical health, I am sure that you must have gained much more mental strength in the last five years. You are such a good role model to others, and you should be very proud of yourself for that. Your columns are always very interesting..it's obvious that you like to write, and you are an inspiration to others too! And I hope your baseball team does well . Our hockey season (the Flames) is over now but it's not baseball weather here yet! Enjoy the Florida sunshine.
You are so brave to stay positive. I have had myeloma for 11 years, mostly fairly inactive and have been ranting about life not worth living if I have to give up walki g, hiking etc. I have resisted taking certain treatments that I will have to soon decide on. My doctor said early on that I would be surprised about how people...me included could live with expanding limitations. I guess he is right but we sure have the right to complain a bit and mourn our losses and our disintegrating infrastructures. The biggest life altering occurence for me was an atypical femur fracture after 7 years on Zometa.
My goodness, but didn't you hit the nail square on the head, Mr Killingsworth.
I'm only about a year and a half out at this point (first event Sept 22, 2010, and dx in January 2011). My story is a bit different from yours in that my life as I knew it ended in one blinding moment of extraordinary pain as vertebra T12 let go... I instantaneously went from 10-hour days slugging bottled water in a cube van to months in bed, a diagnosis of MM, and months of radiation, chemo, and finally a stem-cell transplant.
I can certainly identify with the amnesia, though unfortunately mine is by no means anywhere near complete. I notice on a daily or even hourly basis that which I have lost... and that which I have gained, I must say. "Retirement" actually suits me pretty well, when I am not exhausted or in discomfort from one side-effect or another.
Thank you so much for the honesty with which you write, Pat. It's a real encouragement!
HiPat. This is the first time I've read The Myeloma Beacon and I will definitely be checking it out frequently. I enjoyed your column very much and the comments following your column were very interesting. My husband was diagnosed with multiple myeloma in 2008 (age 54), right after he retired from 30 years at his firefighting job. It threw us for a loop as we had many plans for retirement that were immediately put on hold. He's been through a lot of tough treatments including a stem cell transplant. I totally relate to your ideas of selective amnesia to protect yourself, making the most of a bad situation, glass half full, and being thankful. That's what gets us through this tough journey. Thank you for writing such an inspiring column!
Hi Eva- So sorry you lost your husband. Thank you on his behalf for all you did to help him. Those of us with dedicated caregivers are lucky, indeed. As far as working--I think that is just the way some of us guys are wired... And sometimes we don't have a choice, of course. Good luck in your new, myeloma free life!
John- Don't compare yourself with these marathoners. I know a few. First, they are dedicated and work really hard, just like any other competitor. And second, the three I know feel few if any side-effects at this point. Just an extra little obstacle, like an injury that can be taped and then off they go!
Lisa- I gave up golf mainly because I can't putt! My arms and hands are so shaky I end-up farther from the hole than when I started! Thanks for reading and I hope you follow my daily blog once in a while, too...
Steve, John and Sean- So glad if I can help in anyway! Your kind words are a big part of what keeps me writing. Thank you!
I have adopted what I think, in psychological terms, is called functional denial to deal with and survive my diagnosis last summer and I just try to focus on my two young sons and wife. I am still in my forties and I am going to try to work literally till I drop so as to maintain that "Cadillac" health plan for myself and the family! I honestly don't know how younger MM patients make it and survive when they have wives, kids to raise, bills to pay, etc. The whole thing stinks and I would give anything to go back in time and erase myeloma from my lexicon. Sorry for venting.
Venting is great, Terry! It does "stink." Well said!
Thank you Pat for sharing your experiences and for your inspiring courage. My beloved husband was diagnosed with MM almost 4 years ago now. Sometimes I feel an overwhelming sadness, but I acknowledge it, maybe have a little cry, and then move on. I think his protein levels are up now, we have a meeting with the doctors next Thursday. I am over the shock of the diagnosis, and feel able to support him at that meeting.
I love your honesty, what you write is so real. I love not having to pretend, and I feel better after writing this. Thank you so much.
Thank you. My mom has battled this horrid disease for a little over 3 years. She is a fighter. Having a very rough time now. Very grim. I wish you all only pain free long term living!!
Pat, thanks to you and articles such as this, you've made our glasses more than half full.
Sorry to hear about your husband, Helena. Sounds like you are both experienced myeloma warriors by now. Relapsing is scary, but should be lots of treatment options available. Has he had a stem cell transplant yet? Best of luck and please keep us all updated about what his doctor has to say at his upcoming meeting!
And Stella and Jerry. Thanks for the kind works! Thanks for reading! Helps keep me getting up each morning...
As anyone that's read my postings knows, I'm one of the fortunate few that are relatively symptom free and effectively have no restrictions on what I can do. I'm still living far to the old side of normal vs. the new side. However, your article still struck a chord with me, but from a different angle. I'm actually getting to the point where except for two days of treatment every other week, I'm not thinking about my cancer too often - much like the selective amnesia you mention, but not due to having lived with it so long, but instead because there's not the symptoms and losses that so many others experience to remind me. Even so, like the question your friend asked, MM sneaks back in and everything crashes in for a while and I realize how much I need to be thankful for, and take advantage of, how well I have it now. I hope as I go a long, and I have to move tow the new side of normal, I deal with it as well as you have. Peace.
I'm glad that you are able to forget, Kevin. Tonight I let my pain/PN meds lapse a bit. My hands and feet are burning and numb. I started wondering if I shouldn't moderate my treatment in order to preserve my ability to function. Not a fair choice: Hit the cancer with everything we've got, or--you know--the whole quality of life thing...
Hi Pat...Neuropathy or lack thereof is also a health issue, IMO. Hopefully your doctors can help with this problem soon. Sorry to hear that you are feeling so under the weather. Wishing you and Pattie a happy Easter and all the best. BTW, I tried to order your book on Stem Cell Transplants online (as a paper copy to be shipped here), but your website did not seem to ship to Canada! I remember you asking me if you could use a tip about ginger being a mild anti-nauseant for that book. I see that you have published several books, some of which are already out of print! I guess I should get with the times and order books as online versions, but I still read real books and turn pages etc. To me, participating in an interactive website is something new that I got into with the Beacon. Having my own website would be beyond me at this time, but I see that several people who post here also have their own 'blogs', or websites! Good for you....I drop in and read them sometimes.
Hi Nancy-
Email me if you get a chance. Yes! I am taking 2 gm ginger daily now. Seems to help reduce inflammation, since I stopped taking glucosomine, since it is contraindicated for use while using myeloma therapy. Thanks for reading!
Heck, no! My pleasure. Get permission from Beacon editor if you are going to run the entire column...
Just read your latest post, John. Very well written. Myeloma certainly complicates our lives. You convey this point exceptionally well! Good luck- Pat
I took the opportunity to quote the above post in my latest blog post... I hope you don't mind, Pat.
Well I finally read your most recent beacon article on ‘not having mm’ and once again you have provided a unique perspective into life with mm. So how about a lighter side and slightly non mm related topic that was briefly mentioned? Cancer is not the only thing that stinks, how about golf? I gave up the activity many years back, well before mm. I had enough of the game shortly after going birdie, birdie, birdie, birdie, birdie one day followed by a double bogey and then a triple bogey. Seven holes and even par for all that effort, I quit the round and went for a beer. Soon afterward I took up auto racing and go-cart racing. Golf was a distant memory. Now when I walk a golf course I play visual golf where I visualize each shot as to the ball flight and where that shot will land in order to maximize the approach shot. I then walk to that spot and decide what visual club to use before placing my next shot. Believe it or not I can now birdie every hole. Much easier than the old game and walking a course in the early morning or late afternoon without the distractions of others is one of my favorite post diagnosis activities. And the 19th hole is just as enjoyable. Oh, by the way golfing is not a word. Playing golf is the correct usage. I was told that you can't put an ing onto a verb and it does not appear in real dictionaries. The grammar part is over my head so I elect for a more simple reasoning by saying that you don't go tennising or basketballing, so where does golfing come from? From someone who knows the English language far better than I, rebuttal is expected.
Jim of South Carolina
I miss golf, Jim! I shot in the mid-80's... But now with neuropathy, I would aim my putt in one direction and it would end up in another. That and it's hard for me to take a full swing.
Anyway, I don't miss the time it took away from my wife who doesn't play. I don't miss the aggrivation of not playing well. Like my wife says: "Golf courses are for running!" Goes back to the days when cross country meets were held on golf courses. She was quite a runner...