Pat’s Place: Myeloma And The Holidays
It’s the holiday season. Cut through the slick marketing and commercialism, and it should be a time to give thanks and spend time with friends and family.
For me, living with multiple myeloma makes every day bittersweet. It can be hard to stay positive, especially this time of year. I’ll admit it: thoughts of possibly missing future holidays – and time with those I love – sometimes makes it challenging for me to focus on all of the good things.
But that’s the point. There are some good things.
We’ve all heard the saying, “Having cancer has been a blessing.” A number of patient columnists who write for The Myeloma Beacon have echoed these sentiments over the years. Truth be told, I understand why someone might feel that way. Of course, my guess is most survivors who say that are cancer free at the time.
Still, I can’t argue the point. We all understand how difficult it can be: countless blood draws, bone marrow biopsies, and other tests – then sweating the results of those tests – and, for most of us, the dreaded relapse.
But there have been some positive aspects of the myeloma roller coaster ride, too. I’ve met dozens of hard working men and women who have dedicated their lives to trying to save mine.
After living with myeloma for almost eight years, most of my friends are myeloma patients or caregivers. Come to think of it, if you don’t count my former college roommate and best friend, Tim, all of my friends have something to do with multiple myeloma.
Doctors, nurses, the fun-yet-formidable, no nonsense tech who deftly draws my blood every week, support group members from across the country, and – of course – my readers, all live in the myeloma world.
And there’s more. I have learned to appreciate each and every day. Yes, the holidays can be a difficult time, but each one seems a little more special than they used to. Any excuse to celebrate rings true these days. St. Patrick’s Day. Arbor Day. Our dog’s birthday. An unexpected warm and sunny December day.
I wouldn’t have discovered my love of writing had I not been diagnosed. We wouldn’t have moved to Florida and discovered Amelia Island, an area I’ve grown to love in a very short time.
Even so, don’t bring the topic up with my wife! Pattie misses Wisconsin – and isn’t crazy about Florida – although she, too, admits living here is nice, especially this time of year. But cancer a blessing? She’s having none of that!
No matter the silver lining, Pattie disagrees with anyone who tries to put a positive spin on cancer. A three-time survivor herself, Pattie hates cancer. It almost took her life, and is threatening to end mine. Nothing can convince her that being stricken with it has any redeeming value.
I don’t see it that way, but I understand her point of view.
One thing we can all agree on: everyone would be better off if we’d never heard the words “multiple myeloma.”
Here’s wishing you healthy, happy – and myeloma-free – holidays.
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 .
Hi Pat, I looked at the time of your column submission - whoa! you were either up very late or very early. And the Beacon was the first thing I checked this am - even before tea. MM is invasive and that apparently includes our best sleep hours as well. I agree with both you and your wife about cancer. (Except the part about Amelia Island - it is so beautiful.) In the period shortly after my SMM diagnosis, but not immediately after, I found myself having increased patience and tenderness for people I was caring for at work. Not a weird tenderness, but an awareness of the burdens they carry and are trying to make sense of or make the best of - and my new status with a future that could be short or not, who knew, still don't. And I was glad that I made time to think about and plan for my absence - still trying to get through the basement, but there was a certain mental as well as physical house cleaning. I was also and continue to be fascinated and awed by the energy being put into research and treatment.
That said - time has passed - and I see that worry and watchfulness is built into my days, even into how I eat. No longer SMM, but now in a weird MM category. I have also lost friends to cancer - as we all have - vital, productive, ridiculously funny friends - and the turn off switch for thinking about the disease hasn't been built. I am not grateful for the diagnosis, and I think blessing quite an overstatement to describe what it cancer brings- there is nothing good about the disease that I can identify. But I am grateful for not feeling abandoned, written off, for being able to read the words you write at odd hours, for the winter sun that is so low in the morning it practically ignites the reeds on the water out back, for lots of things I might not have seen or experienced as deeply.
Happy holidays to you - enjoy the southern winter - Best,
Susan
Hi Pat, I always enjoy your columns but this time I'm with your wife. My wife, who is also named Pat, is in the watch-and-wait phase and I, like you, am grateful for all the doctors, nurses, and technicians who deal with this disease. I remember reading one of your columns where you informed all of us that over the past few years there really haven't been any major developments in terms of overall survival. It always irritates me when I hear on the news that they cured some type of cancer because I know it won't work for everyone. Perhaps I'm getting old and grumpy, but if they ever discover a cure for MM and it doesn't work for people with high risk or non secretory disease, then I won't be able to enjoy it.
Sorry if I sound down, but like I said, I agree with your wife 100% on this. I often think of what you and your wife have been through and how you are still able to teach us and share your knowledge of this disease, and for that I want to thank you.
Merry Christmas to you and your family and thanks again for stuffing our stockings with hope and knowledge.
Powerful column. Even though you give us a 'glimpse' of your daily battles, I know you have to have to be so tough to handle all you do.
We both got the MM news around the same time, are the same age, but your journey has been so much worse than mine. I did the months of chemo and then the auto and enjoyed 6 and half years of no drugs. The time is coming for me to treat the beast again. Going straight to another transplant and no maintenance (if transplant is successful) is the option I am probably going with. I was surprise at first when my doctor suggested this route, but now I am on board. In fact, planning on harvesting before transplant, because even though I have plenty of cells in storage now for this transplant, the plan is to be able to do a third transplant down the road. Going for short term misery, long term quality of life. You know, we make the best decisions we can, knowing there are no guarantees.
Have long since learned that being in control is not possible. I hate cancer, God hates cancer (there won't be any in heaven), and my faith says that there always was a time for me to die, and cancer doesn't change that time. It just may be the method that it happens. For me, that lifts a burden off my shoulders, and gives cancer far less power.
So, you see, I am amazed how you handle it all with the pain and difficulties MM has brought you everyday. Because those effects of MM are so hard on one's mental ability to cope. Another reason we need a new treatment for relapsed MMer's. A treatment that is much easier on the body that has already been beaten up enough.
I agree with your wife. I can see no good in cancer. Our 35 year old daughter's life has been so burdened since diagnosis. She has been in the hospital 5 times out of the last 6 months since her relapse. My life has been filled with worry and concern, spending most of my time with her. Luckily I chose early retirement 6 months before her diagnosis. My husband still is working, so I don't see him much because I am 2 hours away from where we live to be with our daughter. Finances are another burden, with her having to go on disability and our travel expenses to and from the city. Emotionally it is all heart breaking. The loneliness for her not being able to join her contemporaries in fun and being carefree. So I see nothing good coming out of this because, realistically, we all know what the ending is and that is when I will be a broken mom.
Hi Pat, I agree with your point of view. I don't like the philosophizers talking about unrelated goody-goody points of view. Crudely put, this MM ain't pretty and your posts are spot on regarding this reality. I guess life for us has more of a cross to bear than others. One thing that really aggravates me is the "It's gonna be alright" quote. How in the hell do they know? But take heart, Pat, I'm on your side, I see things like you do. Well, it's raining in Phoenix now just when a contractor who has been putting off my project of which I already paid 60% down, will not show up again today. I thought I'd throw in a tangent in keeping with the rest of the posts and give you a chuckle. Be well Pat, Ralph
Nice column Pat. I mostly agree with Pattie. We may learn some important lessons from having cancer, but I've seen a lot of "Cancer Sucks" t-shirts and have yet to see one that says "Cancer is a Blessing".
Thanks for taking the time to share that, Susan. Yes, I think my wife is a lot more aware at work (dialysis) now that she and I have faced our challenges. Pattie gets upset when she thinks techs and nurses aren't being compassionate enough. We both agree: working in health care isn't just "another job." Good for you!
Joe, I hear you. It's how I feel when Total Therapy proponents tout (possible) cures for some low risk patients. What about everyone else? Still, any progress is good, right? The good news: It looks like the OS curve is starting to turn up sharply. It's such a lagging indicator. No question that a lot of us are living longer. Good luck to your wife!
Sounds like Jan and TJ13 both agree with Pattie: They hate cancer! Hey! Who doesn't? Jan, glad you're doing so well. I'm guessing your journey has been a lot more difficult than you let on. and TJ13, heartbreaking to hear about your daughter. I'm so sorry! So sorry ...
Hey Ralph! I'm with you on so many levels: the contractor thing and the "It's going to be OK" quote. How do they know? Have they seen our blood work? Holt, Ralph and my other readers: I appreciate your encouragement and friendship more than you can ever know ...
Cancer is not a blessing by any means. However, if there is a silver lining, it is that it forces us into self reflection and to focus on what is important in our lives. To learn to put the real important things in life, like family and friends, first and to not worry about things that don't really matter.
Your wife is right, cancer is no blessing, no matter how you look at it!
But, I must say that this disease has really shown me just how much the kids love me. Prior to cancer, the phone would ring and it would show one of the kids' numbers and I would say "how much is this phone call going to cost me". Now they call and stop by to make sure I'm still upright and offer help to the wife and I.
During our 30+ years of marriage, I kind of led the charge, but as the cancer and treatments have beat me down, my wife has shown that there is no doubt she can run the show while taking care of my broken down body. I guess maybe she has been running the show for many years and had me believing I had some form of leadership?
Its amazing how you find your true friends after getting cancer. Friends who keep in touch ask the tough questions and respond with optimism.
Would all of this come to light if I had not gotten cancer? Probably not.
Jerry.
Good column Pat! The holiday period brings on a lot of reflection and heightens emotions, just as a cancer diagnosis does! While I don't believe cancer is a blessing, I think you become more aware of the real blessings in life and it helps to take the burden and challenge of cancer and find ways to make it an opportunity to do, to live, to love, to savor, to enjoy, and to scream when needed. Wishing you many blessings this holiday season -- enjoy counting them!
Cancer is no blessing. The way humans can change their way of life during hardships, that is a real, amazingly blessed phenomenon. It is this ability that turns you, Pat and Patty, and unfortunately many other people in these dark days before Christmas into twinkling stars, leading the way to acknowledgement that mm will maybe get our lives in the end, but will definitely not get the best of us. Have a wonderful Holiday season and may there be peace for all cancer warriors.
Amazing thoughts and comments, everyone! It means a lot knowing you "get it." Some of the most interesting – and bravest – people I know have (or had) cancer. And multiple myeloma seems to be one of the toughest to deal with.
Cancer is not a blessing, but acceptance of the new reality is. My husband Bob was diagnosed in 2012. The previous year he made so many visits to the doctors I accused him of being a hyperchondriac. The pain in his shoulder went from being suggested as a dislocated shoulder to arthritis to a rotator cuff injury. Finally, after an MRI scan, holes in the bone pointed in the direction to multiple myeloma. He is non secretory kappa light chain. His debilitating side effect from treatment is severe neuropathy, but he is mentally very strong with a great sense of humor. He is my hero. We are in our 60's, have health insurance, live in a country that provides good health care to all irregardless of income, and are financially coping. We have moved on from the "might have beens" to accepting what we have. I thank Pat and all of you for sharing your stories and letting us share ours. We wish you Happy Holidays and a healthy 2015.
I agree with everyone else. Cancer is NOT a blessing. It's a MONSTER! The last few years for me have been mind boggling. Since 2010, my wife has been diagnosed with lymphoma 3 times and had an ASCT this past July. I had my MM diagnosis in 2011 and an ASCT in June of 2012. My son-in-law was diagnosed in 2011 with Hodgkin's lymphoma and had an ASCT this past July as well.
I say that to say this. As much as I hate cancer, I must acknowledge that it has changed me for the better. It has also brought people into our lives that we would not have otherwise known, you being one.
Although we've never met, you are an inspiration to all of us fighting this battle. Thank you for that!
Pat, I sincerely hope you realize what a blessing YOU are to the MM community. You are the "go-to" guy for me whenever a question arises during my journey. Thank you so very much for all you do and may the good Lord bless you and Pattie this holiday season!!
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