My Myelomaverse: The Waiting Is The Hardest Part
I may be dating myself (actually, I date a wonderful man), but I find the lyrics to Tom Petty and the Heartbreakers’ 1981 song ‘Waiting’ so apropos to multiple myeloma, and perhaps all cancer.
The waiting is the hardest part
Every day you get one more yard
You take it on faith, you take it to the heart
The waiting is the hardest part
I was 15 the summer when that song came out, a teenager in the midst of 11 siblings, working as a nanny and a printer’s apprentice, day-tripping to New England beaches, working on my tan, and trying to figure out life. It conjures up carefree times, driving around in a beat up Dodge Dart, feeling the warm sun with the car windows rolled down, mixed with an undercurrent of teenage angst. Oh, the memories (but I digress).
It’s a peculiar and infuriating thing, smoldering myeloma. Here I had this disease, more than likely to evolve to the point of doing damage to my body, yet all the doctors would do is watch and wait. And wait, and wait.
After a while, I made friends with the waiting, because if you’re smoldering and waiting, things can’t be that bad. I’ve been told that side effects from treatment can be damaging, so in this sense waiting was good. Life as a smolderer was quasi-normal, except for the nagging knowledge that cancer cells inside of me were constantly multiplying, regardless of how much I limited my sugar intake, skipped the drinks with dinner, or ate organic kale. I also stopped doing impact sports such as jumping and downhill skiing (I never really enjoyed it that much anyway). I felt like I never knew if one of my vertebrae was on the verge of collapse, and why hurry that along?
But I went about my life as best I knew how. There were birthdays and Bar Mitzvahs, vacations and graduations, and periodic covert trips to my P.O. box (because one can’t receive mail with a return address with the words “Cancer Center” at the house when one still is in the closet).
This waiting also brought its own kind of torture. I noticed my anxiety would get worse about six weeks to a month before testing, when blood was drawn and tests were run. That was acute waiting. I would feel unsettled, I would withdraw socially a bit. My sleep would become more disrupted, I would fret about what-ifs, I would fall off the no-sugar wagon. I might even partake in a drink.
Now, ironically, after recent bone marrow biopsy #2 showed 60 percent plasma cells, I am now in the ‘active’ phase of the disease and waiting. But this waiting is different. I know bad things are probably lurking right around the corner So this isn’t the friendly, familiar waiting. It’s the urgent, hurry-up-and-wait kind of waiting. It no longer can be done with relative ease.
Add COVID-19 to this situation, and now many of us are double-waiting, but at least we have the company of the masses waiting with us. There are so many things put on hold right now. Trips to the grocery store, trips to tour colleges, trips to visit our loved ones, trips to explore other countries. I can deal with all that. But as a cancer patient, it doesn’t necessarily feel good to know that I’m not receiving the care that I normally would if COVID-19 wasn’t an issue.
For 10 years I have waited, simultaneously both dreading and welcoming the transition to active disease. With active disease, treatment could be deployed, and then I could feel like I was doing something about this situation. I’m a person who doesn’t like to mess around. If I see a problem, I do my best to fix it, or at least deal with it.
So this waiting is not sitting well with me. Right now, I’m waiting to have a PET/CT scan next week, and if that shows hot spots, it will trigger the start of treatment. So by the time that this is published, I will most likely be waiting for something else, or nothing in particular.
Until then, I’ll use these lyrics from ‘Waiting’ as my mantra:
Don't let it kill you baby, don't let it get to you
I'll be your bleedin' heart, I'll be your cryin' fool
Don't let this go too far
Don't let it get to you
May we all go from strength to strength!
Else Sokol is a multiple myeloma patient and columnist here at The Myeloma Beacon. Her 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 .
Dear Else,
You (and Tom Petty) are so right. The waiting is the hardest part. I’m sorry you are facing possibly starting treatment. I felt the same way when I was first diagnosed in July 2018. Waiting for all the tests, and then for the results, is so challenging. I still get wound up before my blood draws and annual bone marrow biopsy and PET scan (next Friday). Lately, I’ve been listening to Pema Chodron's “Getting Unstuck,” and it is helping. She is wise and has a great sense of humor. She said humans struggle when they search for “firm ground” under their feet because life is always changing and fluid. Somehow that makes me feel better. Know that you are not alone and sending you healing thoughts.
First of all, you're a great writer! And you are so right, waiting is awful. I remember right after diagnosis, I wanted to get the show on the road and start treatment and there wasn't even a pandemic going on. I was impatient and all I could think of were all the cancer cells having a party in my bone marrow. But I had had it for years and it wasn't going to get much worse than it already was at that point. I hope you can start treatment soon and that you have a great medical team. Wishing you well!
When I was diagnosed in 2006, I felt so fortunate that I had 53 great years with a full life, and first thought of the children with cancer that might not live to see double digits. I quickly surmised from previous blood tests thet I had multiple myeloma or MGUS for at least four year and likely eight or more. I was active (70% plasma cells), not smoldering. Somehow we decided to watch and wait, a strategy I don't expect would happen today. Although active at stage I / II, it remained relatively stable for twelve years.
Watching and waiting, although difficult for people who just want to fix things, is a gift. Live your life as fully as possible and take advantage of that gift. I am so grateful for the thirteen years before treatment, being able to retire from a teaching career last year, traveling the world, seeing grandchildren grow. Having met a number of myeloma patients since my diagnosis, I have seen those who are not as fortunate as us who have been given this gift. Even outside the multiple myeloma community, I have watched many acquaintances who I thought would far outlive me succumb to heart, aggressive cancer, or accidental fates.
Another aspect of this blessing is that the treatments keep getting better and more plentiful. Time is our friend. I finally started treatment last summer on a drug only approved a month earlier, with excellent results and negligible side effects. Best of all, the description of multiple myeloma has moved from incurable, to chronic, and now we even hear speculation of a cure someday.
Else, you might just be arriving at the point I was at in 2006. To you and anyone in a similar situation, just live life and keep going for those regular tests, which are such a minor inconvenience. To quote some other lyrics, "Don't worry, be happy".
Just remember, "Baby you don’t have to live like a refugee"!
Great column Else. We never really had to wait for treatment. My husband was in such bad shape when we arrived at the out-of-state cancer center we went to that he started treatment right away. As a matter of fact, we got there and didn’t leave for six months! And just when we thought we would wait awhile for a stem cell transplant, we were told not quite a year after diagnosis that he would get the transplant. We went from not knowing to knowing he had multiple myeloma within six weeks. I can imagine, though, that the waiting for possible disease progression must be very frustrating and nerve-racking. We hope you get the care and treatment you need as soon as possible.
Hello Gretchen – I appreciate your kind words of support. Thank you for the recommendation. I will check out Pema Chodron's "Getting Unstuck"; I have read some of her other work. I hope your upcoming tests are painless and the results are in your favor. Wishing you wellness.
Hi Susan – Thank you for the well wishes. I do find it helpful to pause and think rationally, and not get ahead of myself. One step at a time. Happy Solstice!
Jim – Thank you for sharing your wisdom and perspective. Yes, time is our friend. And wow! You're saying you were able to stay stable at 70% for twelve years? That's incredible. Congratulations on your retirement, and I'm so happy that your treatment is working well for you. It sounds like you live a fulfilling life. Stay safe and well.
Hi Eric – Yes, another good one. A 2002 Los Angeles Times article describes 'Refugee' as follows: "This 1979 hit single largely defined Petty’s musical stance – the fighter who wouldn’t give up, regardless of odds." I'm sure some of us here can relate!
Hi Patty – Thank you! There is so much uncertainty with this disease (and many other chronic illnesses). That seems to be the common denominator, whether early or later stage. I'm sure the suddenness of it all it was very difficult for you to go through, and I'm glad you had access to specialized care. I hope your husband is having more good days than bad, and that you are through the worst part. I'm fortunate to be in good hands, and am curious to find out what's next. Take Good Care!
Dear Else,
Thanks for a really great and thought-provoking column. Arriving at your active disease stage in the middle of a pandemic is so tough. I hope you can have the medical interactions which you need without too much delay.
I found the way in which you described smouldering myeloma very interesting. The waiting, the hoping, and the likely inevitability of the change which was looming. I am sure that I was smouldering for many years but I didn’t know. I had been feeling poorly for a long time and was eventually diagnosed with full blown myeloma requiring immediate treatment. I sometimes wonder what is the better situation, yours or mine! Neither are good, of course, and when you get to the point which you are in now, I’m not sure that it makes much difference.
I send my very best wishes to you and wish you the best of luck.
Dear Else,
Thanks for sharing about the waiting game you have had for a whole decade. You must be a very patient person! I know what you mean about dreading to start treatment. Although I was diagnosed with full-on myeloma, and had many lytic lesions, fractures, and over 50% of myeloma cells in my bone marrow, I was still very scared of treatment. But thankfully, after several months, the myeloma levels were very much reduced and I felt better then. The cancer was dragging me down. So I hope that you have the same experience, and can get through the treatments and emerge stronger.
This is a great article. My husband was smoldering for 2.5 years and moved into high risk smoldering, so he opted for treatment in a clinical trial. Every quarterly work-up left us in a period of anxiety. I felt like we were watching a train wreck, in slow motion, unable to stop it. The numbers got worse every round of testing. Oddly, it was almost a relief when he started treatment, which he has tolerated well.
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