Linda Cohen is a survivor of small lymphocytic lymphoma and was recognized in 2009. Make amends for all of Linda’s blogs right here!
I’m having fun with this “pause,” however I really feel like I’m residing between the traces of excellent well being and most cancers. My persistent sickness — small lymphocytic lymphoma — is presently in a state of non permanent remission. I say “non permanent” as a result of I’ve been instructed there isn’t any remedy. Nonetheless, due to the supply of BTK inhibitors like Calquence (acalabrutinib), I’ve improved considerably.
After virtually three years on Calquence, my physician recommended I take into account stopping the remedy. I used to be shocked as a result of initially, I used to be instructed I’d doubtless be on it for all times. However there’s no established protocol but for these newer medication. I hesitated and eventually agreed. It has now been two months since I’ve been off the remedy. I discover myself navigating an emotional, bodily, and non secular in-between area — the quiet that lies between sickness and well being, and I’m doing my greatest to get pleasure from it.
This remission appears like a pause, not a promise. The one promise is that it’ll return. We simply don’t know when. The remedy labored like a miracle, however I knew these medication had been poisonous and got here with uncomfortable side effects. He believed these had been causes sufficient to attempt to go off for nevertheless lengthy I might. My physician reassured me that I’d be monitored intently and will restart therapy when wanted. By then, there could also be even higher choices.
Nonetheless, I carry scars — some seen, some not. I’m presently studying a novel for my guide membership, unaware till I opened it that it’s a few girl with B-cell lymphoma, the identical type I’ve. The overview I learn didn’t point out this. Studying concerning the character’s PET scan triggered a visceral reminiscence. I used to be proper again in that acquainted worry, that second of ready. I vividly keep in mind seeing it was the physician calling earlier than I answered the cellphone. I knew that no matter phrases he mentioned would dictate how the remainder of my life would go. I do surprise if anybody else in my group will notice how this story would possibly have an effect on me. That in itself will likely be attention-grabbing as a result of I do know I gained’t point out it.
As of right this moment, I’m coping with a persistent cough — much like the one I had earlier than Calquence cleared it up so successfully. I noticed my ENT, who instructed me he’s throwing all the things at it: steroids, antibiotics, Pepcid and Allegra. He was optimistic this may assist… however then he mentioned one thing that stopped me chilly:
“If it doesn’t get higher, it’s essential to return to your oncologist and get again in your Calquence. If it clears up, you’ll know what you’re coping with.”
It was a stark distinction to what my oncologist believes — that this cough has nothing to do with being off Calquence. However this method would possibly show it a technique or one other. I’m going with the optimism of my ENT and the opinion of my oncologist for now.
The purpose is, even whereas in remission, I’m nonetheless residing between the traces. There’s no full exhale, no true letting go — simply the fixed hum of uncertainty, the quiet calculations, the wait-and-see.
Remission, it seems, isn’t the identical as freedom.
I don’t, nevertheless, need this to sound unfavorable. Quite the opposite, I’ve been shocked by how free I really feel at instances, particularly with uncomfortable side effects going away and with no inflexible remedy schedule to stick to. I’m deeply conscious of how valuable this time is. I do know it’s non permanent, and that’s precisely why I savor it. I really feel gratitude each single day. I’m not used to feeling this good with out my remedy.
I nonetheless really feel I’m thriving in remission. I’m studying to acknowledge my triggers and provides them the area they want, acknowledging them with out letting them management me. I’m human, in spite of everything. The secret’s to let these moments move after which shift my focus again to the fantastic thing about the life I’m residing now.
Most days, that pleasure wins — and that’s one thing price celebrating.
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