If They Only Knew
"Hey! You look great!"
I give a half-smile and nod and think of the reflection in the rearview mirror I'd seen a few minutes ago. I'd seen dark circles around my eyes, a smile that took effort, and something in my expression I could not even define to myself.
I reflected on the last appointment with one of the multiple specialists and stepping on the scale and wonder- how did I manage to get the one chemo that can cause weight gain? Hadn't the years of prednisone for autoimmune disease been cruel enough in the pounds department?
"You must be doing really well!"
I tilt my head as I try to imagine explaining that I had drag myself out of bed this morning because it's what you do when you have any severe chronic illness, cancer included. You do as much as you possibly can until you can't do it anymore. And I know I will never get that appropriately explained in a 20-second greeting - or a 3-hour long conversation, for that matter. So instead, I smile and say "thank you."
You still have your hair
The smile and thank you are always followed by an awkward silence - then one of a half dozen possible tentative questions.
"Well, you still have your hair - so it must not have been cancer right?"
I can hear the hope in their voice- the hope that they don't have to hear my story so they don't have to feel my pain. I can hear the confusion in their words that says that they equate cancer with hair loss.
"No," I respond. "I take an oral chemotherapy not traditional chemotherapy. I've lost quite a bit of hair - and the texture has changed so I have a bit of a wave, which is lots of fun since I've always wanted curly hair. "
My smile is greeted with a mixed expression of horror and relief crosses their face - how could you possibly be making a joke about *cancer* and oh good, I'm not going to see the effects of your diseases.
Too many personal questions
"How long will you have to take the chemo?"
I can hear the anxiety rise in their voice - the knowing they've asked too many personal questions that have answers more intense than they had anticipated but also not quite sure how to get out of this conversation. It's almost as high as my anxiety at being caught in yet another one of these conversations.
I don't bother explaining that the option is that if it's not working anymore - I will have to take something stronger, but because of my autoimmune diseases, those choices are very limited.
"I would never let a doctor talk me into taking a medication for the rest of my life. Have you ever tried essential oils?"
At this point, I'm desperately looking for an out - the suggestions about to come my way vary from yoga to oils, to a whole foods diet, and the list goes on - and I know that no answer I can give will possibly convince them that what I'm doing is what's best for me. I wonder what they'd do if they saw the handful of pills taken each morning and night. I wondered what they'd think if they heard me go over my 16 medications with any one of my 9 doctors.
One of us finds a way to break away - and I see them walk away shaking their heads "Feel better soon!" or "Get well quickly!"
Feel better or get well
And I walk away and hope they don't see me shaking my head because I won't "get well" and "feel better" is relative and unlikely- and I realize that thing in my eyes I couldn't define?
The sadness that I knew I was going to run into at least one person that would not see what I was going through - at least one person who would push the personal questions beyond "hi, how are you/hi I'm fine how are you?" exchange.
The frustration that no one can see the pain so deep it feels like my bones are being broken. The inability to explain the waves of dizziness or the sleepless nights due to an unbearable itch that can't be scratched.
The frustration that while I'm pushing myself as far as I can, I'd rather be thinking about what I need to get done not how I'm going to explain it to yet one more person who thinks they care and thinks they understand but it's all too clear that they are more afraid of my pain than understanding my pain.
That look in my eyes was the frustration at realizing that I was about to be judged by someone who thinks they get it - but aren't even trying to get it - again. What was in my eyes was the longing that someone would be willing to see what they can't see and touch my heart with the lack of judgment and an open heart.
Have you used CAR T therapy as a treatment for blood cancer?