Myeloma On The High Plains: Surviving
So, here is my reality: I do not like eating beets. And I do not like having multiple myeloma.
However, there is a huuuuuge difference between the two “do not likes.”
With the beet issue, I can choose to not buy beets at the grocery store. Problem solved. Beets can be avoided.
Not so with multiple myeloma. I cannot choose, or at least I did not have a choice in getting, multiple myeloma.
No beets is easy. No multiple myeloma? Not so easy. See the difference?
When I was first diagnosed with multiple myeloma and during the subsequent six months of induction therapy that led to my stem cell transplant, I was in a fog. I just did what the doctors told me to do and lived a very structured, and scared, life.
Managing the disease and my physical well-being was definitely put into the hands of the doctors and nurses who were going to oversee my treatment. They advised me regarding nutrition, exercise, and of course anxiety (big problem there). There were not too many decisions made that did not involve input from them. I had to place my trust in them. My survival was at stake. If they had told me that howling at the moon would be beneficial, I would have spent a portion of each night howling at the moon.
The desire to survive was and still is strong. Everything that was encountered, considered, and accepted during those first six months was viewed through a perspective of “Will this help me to survive?”
Everything.
I wanted to survive, I did not want to die. Accepting that my life was going to require adjustments because of the myeloma was understood. However, it was secondary to my desire to survive.
To give you an example of how that desire made me crazy, the weekend before my stem cell transplant, my wife and I decided to get away and head up into the mountains (no, we did not go camping, I do not like to camp; but I digress). Prior to leaving, I needed to swing by the hospital to give yet another blood sample.
Later that afternoon, while trying to relax in the high country, I got a call from the hospital. The message let me know that one of my blood numbers was a bit off and that I might have to wait another two weeks to move forward with the transplant. Well, the message I heard was “Your numbers are off and you are going to die. Today!” Ahhhhh!
I called the hospital back right away. It was my turn to leave a message. Waiting several hours for them to call me back gave me further evidence (as if I needed it) that being treated for multiple myeloma does not even put you close to being the center of the universe.
When the doctor finally called me back, I immediately launched into this tirade where my fear and uncertainty were front and center. “What does it mean that my numbers are not perfect? I am dying here. I need help, I need comfort. I want to survive!”
Gratefully, the doctor did not hang up. He came right back at me with “Yes, you are going to die, but for crying out loud, we are all dying!”
He went on to say “What you will die from and when that will happen is frankly something we have no idea about.” He added, “Let me assure you that if we did know those things, we would tell you! So slow down, relax, and listen."
"You are fine," he continued. "You have multiple myeloma [hearing someone else tell you that you have multiple myeloma is never a “light” moment], and we are treating it to the best of our abilities. We feel good about your case, you have responded up to this point as we would like you to. We will move forward with the transplant. We want you to survive. However, nothing is guaranteed. We are on the same page here, partner. Let’s see what happens.”
I remember that it was at that point I finally felt that he understood my survival instinct, which was very high. I was humbled and somewhat embarrassed. As I write this, I want to cry because I now realize how lucky I was to have this doctor and his team in my corner. They understood that I wanted to survive. They provided me with comfort. What a deal.
Very early on in your multiple myeloma journey, you learn that there are no guarantees when treating this disease. What works for some may not for others. Our “control” is minimal. But I needed something to hold on to, something that would keep me going. For me, it was surviving this challenge each and every day.
Now that I've taken some time to reflect on survival (in this one-day-at-a time universe), it is apparent that sometimes it’s hard, sometimes it's not. Sometimes it's painful and scary, sometimes it’s not.
Hmmm, it sort of sounds like life before multiple myeloma.
Mark Pajak is a multiple myeloma patient and the newest columnist here at The Myeloma Beacon. His column is published once a month.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Thank you for sharing your column, Mark. I can relate! I bet that most of your readers can recall a time when they experienced similar anxiety waiting for "the call" and feeling anxious about what lies ahead. When you or your loved one have myeloma, it does change every aspect of your life. Even vacation days are not free from the need to fit in labs and treatment infusions. I agree with you that learning to live with myeloma is a "one-day-at-a-time universe." When things seem at their worst, I try to think of each day with my husband as a gift. Sometimes that helps me get past those bad days and cherish the good ones. I hope that your journey is filled with many more good days than the other kind!
Tabitha - Thanks for your kind words. They are very much appreciated. The gift of each day is not easily missed when we are on the cancer journey. Even those "not so pleasant" days come with an upside. The "one day at a time" mantra helps tremendously.
Thank you for sharing your survival anxiety with us. In our five-year myeloma journey, you are only one of a few who has expressed the overwhelming desire to survive multiple myeloma. I guess for many of us it is expected that we will do everything to help our loved ones fight myeloma. It takes a lot of courage to go through all the therapies necessary to get a complete response. Enduring maintenance therapy can also be quite a challenge. But as many of the contributors to the Beacon have pointed out, everyone approaches treatment choices differently and everyone responds differently. Reading columns like yours helps all of us understand that we are not alone in our journey.
Patty - Thank you so much for your perspective on the column. I love when others share their thoughts and experiences. There are no guarantees in this journey, so hearing from others really helps.
Dear Mark,
Thank you very much for your courage, eloquently and clearly putting your fears out there. I and I guess many hear on the Beacon can very much relate to that!
I was in a “similar fog” before my transplant und struggled with trying to be in control (former committed control freak) vs expressing my anxiety. The first nine months after my diagnosis was a hard time, especially psychologically, and often in the dex days I was driving myself and my family crazy.
Thank you for both of your columns. I'm looking forward to the next ones.
Schubidu - Thanks so much for your kinds words about the column. It certainly feels good to hear from others who are on a similar journey. Letting go allows me to laugh at myself and my desire for control. Oh well, some lessons come easier then others.
I'm so glad your doctor has a great bedside manner. Mine does, too, and I know there are others out there that don't, so I count ourselves blessed! One thing I learned from this cancer is to take it a day at a time, because we are in a marathon, not a sprint, so yay for us long distance runners!
P.S. I think howling at the moon sometimes is good for us.
Susan - Thank you so much for taking time to respond to the column. I am never quite sure if what goes down on paper makes any sense. Your kind words are so very much appreciated.
Thank you Mark for your column. I was also flung into a panic when getting diagnosed with multiple myeloma. Because I had injuries and was also in a lot of pain, I just felt miserable for quite a long time! But as the induction therapy worked to decrease the burden of cancer cells in my system, I felt a little lighter and better, and I realized how the cancer had been affecting me adversely in many ways. Apparently my oncologist told us that he could promise us tree years of survival, but fortunately, due to good luck and good management of my disease, I am now over ten years. The 'howling at the moon' analogy reminded me of a needlework picture I did at that time of a wolf howling at the northern lights!
Nancy - Thanks so much for your kind words. I am always so grateful to hear about success stories such as yourself. Ten years! Man, that is terrific. Thanks so much for the positive words. It helps a bunch.
My husband was diagnosed 6 months ago, and although he was improving on his initial treatment, in the past few weeks he's taken a drastic turn for the worst and is currently in hospital. They're giving him treatment to flush out the calcium and protect his kidneys, and there's talk of stem cell transplant. We're both terrified and on a steep learning curve, but uppermost in our minds is what you've written about in your article: Survival. I'm reading as much as I can so we can both ask the right questions. He's under the care of a new hematologist and we soon will see a myeloma specialist, but it's still terrifying. I hope learning more about his options will calm us both down. Till then, I'm currently howling at the moon for both of us.
Lynnne H - Hang in there. To be terrified is so very normal. I believe that it would be very unusual if that were not the case. We can be grateful to be on our journey when medical help is so very available and effective. If it helps, howling at the moon is great!
Dear Mark, thanks for your column. I could relate to it so well. I also share your dislike of beets and of having myeloma! I was chuckling at various times when reading of your dialogue with the doctor - glad you survived to tell us your tale!
Marjorie - What are we going to do about those beets?! Thanks so much for your kind words. It's great to hear from people who are on a similar journey. Stay in touch.
Dear Mark,
Thank you for your column. I like your final sentence a lot!
Best to you,
Sylvia
Sylvia - Thanks for taking the time to comment on the article. Yes, life goes on after a cancer diagnosis, and that is if we are lucky! Stay in touch.
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