Cancer is an Unwelcome Passenger with White Hair

Why does it seem like the only people who are telling me that my almost white-as-the-driven-snow hair looks so “me” are the ones who will love me even when I’m old and gray? Oh wait….I AM old and gray “ish”, which means that I really shouldn’t care that my once down to my shoulders dark blondish hair is about an inch long all over, the color of sloppy snow, and so curly/frizzy that I look like I went for a permanent and left it on too long. I look like I am 90, OK, maybe that’s a small exaggeration, but I do look generations older than my spry 68, and each mirror reflects the same dreaded face and hair combination that proves once again, yes, you do have cancer, and this is what you get for it.

My archenemy cells

As if the year 2020 weren’t a red-letter year for all of us, in August of last year I had a stem cell transplant to combat my multiple myeloma, successful I might add, in the sense that I didn’t get as dreadfully sick as I could have or anticipated. I am currently in a positive minimal residual disease status, meaning that the lab found some lingering myeloma cells lurking in my bone marrow, but they are a smallish percentage. We just know that they are there, hiding perhaps, trying to proliferate maybe, but there, nonetheless. These are my archenemy cells, and I am out to get them with continuing chemo medications that are tolerable but tend to make me worry about what else the chemicals may be doing to the healthier parts of me.

Since my diagnosis in August 2019, I have faced every day with the knowledge that my body turned on me, silently, stealth-like, but still produced protein cells that weren’t supposed to be there. When accidentally discovered in a routine annual exam, myeloma cancer cells occupied 75% of my bone marrow. It was not-so comforting to know that these nasty partners were killing my good cells, reproducing in my system unbeknownst to me, like a thief who steals your much-treasured heirloom silverware, and you only discovering its loss when you open the silver chest at the holidays to find all but 25% of it missing in action. How did this happen? Why? When? Does it really matter how, why, or when? It is gone. Can you get it back? No, you must pick up from where you are and move on to obtain new silverware, perhaps going through some hell along the way, but, moving on, just left with the memories of a once full silver chest where everything matched. And you knew nothing about myeloma, except that other people were cursed with it.

Accepting a blood cancer diagnosis

One to linger in the memories of how things had been, I often find myself longing for the days when I had never really heard of multiple myeloma -- those days when my concerns were maybe less significant. Having cancer has shocked me once again into the full awareness of “we never know what’s ahead, good or bad,” as if I needed that hit-over-the-head reminder. I have had dreams whereby the hematologist walks into the exam room and instead of the cancer dialogue, says something like, “Not certain why we were concerned, Mrs. Seigle, but nothing to report here – all is good.”

Of course, I can’t go back and redo the conversation or the results or the trauma or the pain. What I can do, and am doing every single day, is living with the knowledge that life is precious, tentative. We all carry our crosses in this life, some seen, some more invisible, like the blood cancer that I have. That is, of course, apart from the hair thing. Let’s not forget that.

Take that myeloma

My hair issue is my not-so-subtle reminder that my life has changed in so many ways, not the least of which is the hallmark of many women. I absolutely do not like the new hair at all, and I continue to wear wigs outside the house just to keep the pretense up that, yes, I am fine, nothing to see here, no problems for this woman. Why? Well, as a cancer patient, I think we are allowed certain individual privileges, like pretending that this silly old myeloma thing is just a condition that I have to manage.

Well, wait a minute….it really IS a disease to manage when you look at it like that. It certainly isn’t me….and I am certainly not the face of myeloma. We cancer bearers come in all shapes and sizes, don’t we? From the incredibly young to the old, from all corners of the world. When you are told that you have cancer, you enter a society that you never wanted to join. You often feel isolated, left out of the “normal” world. If my short white hair identifies me as a member of that society, at least to me, well, no thank you. I will go on making myself comfortable in my own mind that things are fine, and that I am fine, and that cancer may occupy part of my body, but will never make me a different me.

So there, myeloma, take that. You may be there along for the ride right now, but you are not a welcome passenger and you are certainly not the driver. Oh sure, you’ve got my attention, and you’ve been the life of the party, but those days are over. The results of dealing with you, like the white, curly hair don’t mean that you have the upper hand. Not by any means. And never on my watch.