Pat’s Place: Do You Remember When?
I’m not exactly sure when it happened. Maybe it changed two or three years ago.
Regardless of when, the result is clear: I can’t remember what it’s like to not have multiple myeloma.
I’m not a poet – I haven’t written any poetry since high school. But I would like to give it a try this month:
Do you remember when you didn’t have to live with pain
Aching bones, twitching nerves, and needles
Every day, every week, again and again
Maintenance therapy that never ends
Chemotherapy that changes with the latest trends
Anxiously waiting for results from your tests:
Anemic, neutropenic, paraprotein gone wild
A rod in your leg or concrete in your spine
Or kidneys not working right
Not getting up to go in the night
The doctors say I won’t live long.
I hope they’re wrong!
I watch shows on HGTV about moving to Hawaii or Alaska, and I think, “Are these people crazy? There isn’t a well-known myeloma specialist in either state!”
When I was in my 30s, my wife Pattie and I both had Alaska teaching licenses. Owning four rescued sled dogs, our plan was to move north from Wisconsin and do it right! We settled on the northwoods in far northern Wisconsin and ended up with four more rescues – and his and her dog sleds.
Turns out it was a good thing we stayed in state: Pattie was diagnosed with ovarian cancer a few years later. We were a long two hours away from an excellent cancer center. But had we been in an isolated village in Alaska, things would have been far more difficult and complicated.
Pattie’s cancer dented our innocence, our “We’re young and indestructible” adventurous spirits. But myeloma finished it off.
We lived in a home we loved on a five-acre hilltop – yet right in town — surrounded by beautiful wild flowers, where we could watch trees grow that we’d planted years before. It was a big home, with lots of panoramic windows.
Yet we could see how the various things that made it special could be drawbacks, too. Our driveway was long and icy in the winter. What if I slipped and fell? The windows tended to be drafty, making the house a nightmare to heat. Our heated, tuck-under garage was awesome. But our main living area was upstairs; not a great idea when I was so sick that I needed to rest after taking each step up. And the roof would need replacing soon, too.
We lived within walking distance to the beautiful St. Croix River. But St. Croix Falls was too far from Mayo Clinic. Doctors had told me I would only be around for three or four years – and that I probably couldn’t work. How would we pay for the heat and property taxes?
Had I known I would live this long, we would have never moved. But based on the information I had at the time, we relocated to Florida and purchased a far less expensive one-level home.
Myeloma has changed my life in countless ways – some good, others not. It has disrupted and changed what I do and when I do it. I’m living in a different place, doing different work; eating, reading, and thinking in different ways.
The other day, someone rhetorically asked me, “What would you do if you were cured? How would you feel?” After reflecting upon their questions for a while, I would have to respond, “I don’t know.” I really don’t! Multiple myeloma is such a big part of my life. I can’t imagine living without it.
That may be the most tragic loss of all.
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Pat I love the poem and I agree with you that our lives choices now revolve around myeloma. I'd love to move here or there, but my first question is if there are any myeloma specialists in the area? Or needing to select an apartment that is on the ground floor.
Take care.
Pat, I always enjoy your column and this one was no exception. And I loved your poetry! I understand what you mean about myeloma always being there in all aspects of your life. Just want you to know that I am glad that you've proven the experts wrong so far. Hang in there and keep on keeping on!
Pat, as always, you are right on. I really enjoy your columns and your spirit and honesty.
Reading this makes me fear the future. For two years I have operated as somewhat normal. I have tremendous back pain at times from my surgery but, otherwise, after transplant and radiation and chemo, I feel good. Sad part is I know it's coming, I know that some day I will require more frequent visits, more frequent treatments, more help from my wife, will have less time at work and less ability to be the man I want to be for my family. Day to day I can even forget I have it sometimes, then I remember and the anticipation of the unknown just makes me sad, mostly because I want a life with my wife. I love her so much and we have only had a couple of years together! Life is not fair for sure!
I am the mother of a 34 year old daughter with myeloma. It is on my mind every day, even though she is doing well now. My husband & I often thought we would move when he retired, but now we don't want to because we don't want to be far from her. I am her caregiver when needed. Every morning I say a little prayer to give her a healthy day & every night I thank Him for letting her have another day. I try not to think of the future.
Pat, great column. It is amazing how our identity shifts from a former life to "myeloma patient." The change is abrupt and sudden, in some ways, and slow and insidious in others. We can't change what life throws at us, only how we deal with it. The great thing is that you have embraced it in a way that is positive and helpful to others.
Pat, you and I were diagnosed with myeloma at about the same time. For me it was late summer 2007. I remember asking myself well over a year ago if I remembered what it was like to feel "normal". I was shocked when the answer was no. I, like all cancer patients, had been striving to "get my life back". I had to admit to myself that that goal was truly impossible. I have replaced some things I've had to give up with other things that I had been interested in but never took the time to pursue. We lose some we gain some. Great column. Thanks for your insight.
Yes, Becky, myeloma considerations are often front and center. To be fair, many of the same issues face others with disabilities or afflictions. Don't get me started on "what would I trade in place of multiple myeloma?" My left arm? My right? I see news stories about injured veterans that lose their legs. Would I trade my two good legs if my myeloma went away? Maybe I'm still trapped in the bargaining faze of mourning!
Thanks Sandra and Matt! Hugh, you're in what I like to refer to as the "myeloma honeymoon" phase; the (hopefully) long stretch following first remission or stable disease. Enjoy it! Sorry to hear about your back!
Thanks, Pat, for such honesty. I hope and pray for a huge breakthrough in this disease soon! We should all be able to hope, dream, and plan again the magnificent lives we wish to live! Our pain should be brief and a momentary experience that would be no worse than a trip to the dentist's office for an emergency root canal! I would trade losing my hair for less pain and fatigue for sure! But I'd rather not bargain for feeling better, no trading, just paying it forward in some meaningful way. I am rooting for you to win the next best treatment and create in all of our lives much more time on any given day to dream, imagine, and enjoy life!
Well said.
Nice that it can express a tangible loss of something quite valuable and personal, even to a non-myelomer.
Sad that only a myelomer can fully appreciate the grief over a former life and all it's joys.
Keep writing, Brudder!
Hi Pat,
I feel like you when high on dexamethasone. You sure you didn't overdose? Just joking - keep at it - it's very refreshing reading.
Terri reminds us that it isn't just the patient that is constantly inconvenienced, worried and reminded about their myeloma; what about the caregivers, too? 34 years old is so young! I'm not sure that should make a difference, but I'm guessing most of you will agree that hearing about a younger person battling our cancer seems to really resonate and hit home.
Arnie, you don't need to write a column this month. I think your insight is profound -- and you did it in a single paragraph!
Nancy is always positive. My column will be more upbeat next month. Promise!
Congratulations, Pat, for being strong, positive and giving. Your poem expresses feelings well. Even so am in "honeymoon" of the disease, my life has changed for good. Some days are smoother and resemble the old ones, some others are tough, and I do find consolation in the words that you, other authors and members say, because we understand each other and we do not have to pretend everything is fine like we have to do with the other people. Those who are not ill have no idea about the way we feel. I wish you all the best!
Well said, Annamaria! Thanks for the encouragement!
Wonderful column -- just so well said.
And honestly, I don't know if I could answer the question of how I would feel if I were cured!
I'm guessing we'd get used to the idea, April! Maybe a good analogy would be returning from three tours in Iraq or Afghanistan. I didn't do that, but I can guess the feeling of loss and uncertainty -- when you're expected to be ecstatic to be home -- could be similar. I will admit one thing: it's something that I'd like to try!
I read you column frequently. Seems like you've been through just about everything. I'm a retired oncology RN. Hoping you might give me your thoughts on something I'm going through today. I caught my husband's cold yesterday. Cough, temp between 101 and 102.4. Tylenol, cough syrup, lots of fluids.
We live in a remote community on the Big Island and my husband is doing errands today in a town about an hour away. I've been very healthy 3 years after transplant. In remission. I've not had a temp the 5 years since diagnosis.
I hate to press the panic button.
Lungs clear? I just had a friend put off seeing doc and ended up in the hospital for five days with viral pneumonia! Why not err on safe side? Even three years out. Glad you're doing so well otherwise! Feel better and let us know how you're doing ...
Hi Pat,
I'm a bit late reading your column this month but better late than never. Like you I made decisions based on my predicted short term prognosis. At the time they were good decisions but, if I had foresight, I would perhaps have done things slightly differently.
There are things that I would love to do, go skiing or do some overseas travel. Having myeloma would certainly make it more difficult to arrange but not impossible. Unfortunately it is the lack of money that makes it impossible at the moment.
As for a life without myeloma - I suspect most of us would cope quite well (although we would be nursing a few battle scars).
All the best,
Libby
I understand; cancer and not enough money. That line stretches around the block!
Thanks so much for your honest, straight-arrow column this month. Your comments on the changes (abrupt and subtle) of mm really rang true for me. I appreciate your sharing and also the comments from others in the mm community, too. Take care, Pat.
Sylvia B.
Thanks for reading! Glad I can help...
Hi Pat. As usual you scored a direct hit this month. I was diagnosed down in Florida (@Moffitt) and have now moved up here to Illinois to be near my family. I have to admit it wasn't my best idea LOL. The doctors up here are really top notch but more expensive. The UofC doctor charged me $8K to review the records, do a bunch of blood work and meet with me for 1/2 hour, only to tell me that I have multiple myeloma.
But I agree with you, my life before myeloma is gone. I used to kayak on Sarasota Bay, hike in Myakka Park and have my senior citizen friends over for lunch. Now, the surgery left me with nerve damage pain and chemotherapy leaves me sick. I can't kayak anymore, hike anywhere or even enjoy anything. My move from Florida to Illinois slammed the door to my former life shut. I am searching for ways to start over ...
Julie
As I'm learning now, one of the most difficult things about relocating is finding new docs. I share your frustration! Most of my family is in Illinois. Still griping about tough winter!
Pat,
Loved the poem, although it made me sad and apprehensive about what is to come. Hoping that we can get through it with the grace and caring for others that you and your wife have. Trying to stay positive is not always easy.
Laurie C.
As Thich Nhat Hanh says, the greatest liberation is freedom from fear. Freedom from past and future; the present is all that matters. As MM patients, we live with that gorilla on our shoulders, fearing the future. But what can we do to change that prognosis ? Nothing. Drug development and treatment advances CAN offer us hope.
Blah, blah, end of Bhuddist lecture.
More importantly, I wanted to say to Pat, thank you for your column; it's, honestly, the only MM blog I can stomach. The rest make me feel sick. And I'm already sick, so I don't need anymore of that feeling!
Question to you and others:
How do we combat the muscle-wasting and fat accumulation from dexamethasone? I know you were strong and athletic before this shiite (more acceptable Britspeak), as was I, racing professionally, etc. I still try and run and ride, but, although I have plenty of endurance, the muscle power is gone. Any tips?
Thanks, Van! Controversial, but testosterone supplement has worked for me. I feel like I have some muscle again. Before, I worked out and it never seemed to do any good. I'm not sure I get an energy boost, but some I've spoken with think it helps. Still need to work out, though. And my testosterone numbers were really low. A real need.