It has been six years since I began remedy, and three years since I walked away from the scans and appointments. My unique prognosis was 5 years, ten with the trial; I’m on six years. So far as I do know, my most cancers is at present dormant, a phrase many with an incurable illness want over “remission,” as remission is usually heard as “treatment.” I at present don’t have any outward indicators of the illness. However there’s the rub: I’ll by no means be with out my lymphoma, and I’ll by no means be myself once more.
My hair, eyebrows, and lashes have grown again, my pores and skin now not peels, and the boils on my face and head are gone. However what folks don’t see is what haunts me day by day.
I’m fraught with exhaustion, fatigue so nice that I nap nearly day by day. This isn’t the tiredness you get from staying up previous bedtime. That is the slack-jaw, I have to sleep now sort of feeling that surpasses every part else–work, play, household, and leisure. Due to my fatigue, I’ve issue sustaining a traditional work life. I would like a settee in my workplace to relaxation on, or entry to the mom’s nursing room down the corridor to put down, or recently, the power to do business from home to sleep throughout my lunch hour. My social life doesn’t exist previous 7 p.m.
I’ve power joint ache from the results of the trial drug. There are occasions after I want strolling aids to help me resulting from ache and irritation. I’ve additionally skilled points with stability, which I’ve since gone to rehab to work on.
The chemo mind, a fog that has lived with me for years now, is a continuing companion that swirls by way of my ideas like smoke, clouding my short-term reminiscences and scrambling my phrases. This makes the only of duties typically overwhelming: Grocery purchasing, interacting with folks, or retelling tales.
After which there’s the trio of hysteria, PTSD, and survivor’s guilt which can be connected to me like a shadow. Nervousness is the biggest of the three. In spite of everything, the physique that also homes me has betrayed me as soon as. It would absolutely do it once more. The belief that I undergo from PTSD didn’t manifest till I reached my terminable date–5 years, and I discovered that just about each different individual on the trial with me had both handed or relapsed. Why haven’t I? When will I? Cue the anxiousness. Now, I hyper-panic over every part, certain that every hangnail, bruise, or hiccup is the beast’s return.
The survivor’s guilt is probably probably the most advanced and complicated. Most individuals don’t perceive why I’d expertise guilt for nonetheless being alive and thriving. However, you see, MCL is so harsh it’s considered one of only some cancers on the record of compassion disabilities that permits for incapacity advantages. Nonetheless, I nonetheless work a full-time job and by no means required incapacity, whereas so many different folks in my place did. I’ve not relapsed, whereas almost all have. I’m nonetheless extremely functioning, whereas so many have died. By all accounts, I’m doing miraculously. However inside, I’m a catastrophe.