Does Having Blood Cancer Make Us Overly Sensitive?
Does having blood cancer make me overly sensitive to what others say? Please let me know if you feel that way too.
The questions at a first appointment with a new provider
The other day I was having an evaluation before starting with a new physical therapist. The idea, at last, is to try to strengthen my legs and improve mobility. For the past year, I’ve been using a walker 24/7, indoors and outdoors, which is a big change.
I say “at last,” because it took a long time to get a referral and an actual appointment to get in the “system.” I had just started P-T again last fall when it was curtailed by emergency gall bladder surgery.
Anyway, back to the case at hand. This new physical therapist said she knew all my background and records were in the computer, but she preferred to chat and start “from scratch.”
Knowing my litany of medical conditions, allergies, etc., I didn’t think it was a great approach but played along.
Did she really read by records?
After explaining my type of blood cancer, chronic myeloid leukemia, later on she asked, “do you have any problems with your blood…?” Maybe she saw the look in my eyes because she eventually added, “or is it just the cancer?”
Just the cancer. Call me triggered. I’ve had “just” the cancer for 8.5 years and it has ripped my life to pieces and changed everything. I’m not being overly dramatic, that’s just a fact.
Nonetheless, I replied, “Nope, just the cancer.”
The questions and answers continued. At one point, and I forget the context, I said something about side effects from my treatment.
More side effects than nausea
“Oh, I don’t mean that,” she interrupted. “I don’t need to hear about nausea.”
“Well,” I replied, because now I was getting irritated. “For your information, there are more side effects to my treatment for leukemia than nausea.”
“Really?” she replied kind of cynically. “What do you mean?”
“Headaches, bone pain, muscle pain, joint pain, fever, fatigue, neuropathy…a lot of things.”
This evaluation had gone on for an hour and I was frankly getting tired. Just leaving my apartment, driving all the way there and getting to the building from the parking lot had wiped out most of my energy. And starting “from scratch,” with my medical history (which I never completely gave) was exhausting.
Her questions made me defensive
A little later, she noted that I had indicated having suffered from depression either in the past or currently. “Why are you depressed?” she asked.
Again, I went into defense mode. I started to laugh. It has been a rough 8.5 years. This past year has been hellish for many reasons—especially since my treatment with a particular tyrosine kinase inhibitor stopped working and my levels of leukemia has skyrocketed. Loss of a lot of mobility has hurt my psyche probably more than I admit.
“Why are you laughing?” she snapped.
“Just a lot of medical things going on and that makes me depressed,” I replied, simplifying the psychological toll of chronic illness for her, when it is anything but simple.
Her concluding statement was that if my brain wasn’t sending the proper signals to my joints and spine, there really wasn’t much they could do to help me. Nevertheless, she’d schedule a half dozen appointments.
Most people don't get it
I left the appointment completely defeated. It had taken such a long time to get scheduled and I was being told basically I couldn’t be helped. Talk about depressed. I was also annoyed at the “just” cancer comment and her perception about side effects. It brought the point home that there are many myths about blood cancer and most people just don’t “get it,” unless it happens to them.
Good news, though. When I returned for my first appointment, I saw a physical therapy assistant who I worked with last fall. In casual conversation, I found out I could return to the therapist I worked with off and on in the past if I wanted. (She came into the room just to say hello).
My happy ending
When I told them both about the comment about there being nothing that could be done, they vehemently disagreed. Although I would have to work slowly and carefully, they assured me that, of course, there are ways to strengthen my legs and get better on track.
I left feeling so relieved and more positive about the future. But I wondered if I was overly sensitive in general these days. While I’m facing things outside of blood cancer, CML still takes center stage. And it isn’t “just,” anything.
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