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!