It’s my quarterly visit to my hematologist/oncologist to review my blood test results. We’ve been doing this for a couple of years now and I know what we’re looking at and looking for in my tests (printed and in my purse, with notes), so I have the confidence of a patient just going through the motions, the very definition of “chronic illness”.
Though I hate to admit it, this day, I’m more concerned with how my hair looks due to the rain and just how fat the scale is going to say I am this time. My husband drops me off and goes to park the car. While I’m waiting out in front, I see a woman who is so, SO skinny. She’s walking to her car and I only see her from the side, then the back. Her legs are like spindles and a small child could pass through her “thigh gap” (of which I have none). Wow, I’m not feeling jealous, for a change. And the words, “there really is a too skinny” float across my brain with no place to reside because I’ve always considered them an oxymoron when used together, so I just focus on something else.
Like a dog who suddenly sees a…. SQUIRREL! I’m now thinking, “This place is beautiful”. So when I’m pretty sure no one is looking, I snap a few pictures with my phone, right before my husband returns.
Walking through the front doors, we are instantly greeted with wide, airy, open spaces, then an information area made with colors that can best be described as ‘happy’, and greenery. Lots of greenery. Life. Straight ahead, the plants line a giant wall all the way up to the skylights and all the way through the sectioned waiting areas. It’s like this place that should be scary because it says “Cancer” right on the building, yet it also screams PEACE at you, so you feel peaceful.
The only thing that was bothering me, was my hair. I’ve always had long hair, but at 54, the texture has changed from coarse, frizzy, wavy hair that I straighten, then force into a manageable wave – to flat, straight hair that is not at all interested in holding onto a wave. And it’s entirely too long for someone my age, almost reaching my bra along my back. And the grey… yikes! I decided to stop coloring it and let the grey grow in. It’s kinda like an ombre, but not —
And then I see it – I see her: a woman without hair. Oh, gosh… she must have actual cancer and lost her hair from the chemo. Poor thing. I immediately decide I am a self-centered, ignorant, vain monster. And then I see a second woman without hair, but she’s wearing a scarf. I’m not even going to touch my hair. I feel horrible and guilty that I even have any at this moment. But then they call my name and the moment passes. I move on, hopefully away from women without hair.
Truth be told, there is something else that’s bothering me. My husband always comes into the exam rooms with me, but my last visit to this doctor – the hematologist/ONCOLOGIST, he asked if he could just stay in the waiting room. Sure. Whatever. NOT whatever – it really bothered me. Even so, before the nurse comes out, I whisper to him: “You don’t have to come in with me if you don’t want to”. He doesn’t want to.
Oh, great. I’m being directed to the ‘weigh station’. It’s a little cubicle where nearly the whole floor is a scale, so it’s hard not to feel like I’m an elephant or hippo. Upon further reflection, though (after 2 years), I realize it’s probably to accommodate people in wheelchairs. Still, it doesn’t make the number I see displayed any easier to look at – even if it IS in kilos. Hello? This is the U.S… the only country that doesn’t participate in the metric system and is proud of it! I know the exchange rate (whatever) is 2.2 pounds per kilo, but at the moment, I’m choosing only to think of the number 99. And hey, my blood pressure is normal, not high. (Despite the trauma of being weighed first.) Focus on the positive!
Sitting in the exam room with the windows near the ceiling, it’s difficult to keep my mind from getting pulled up into the sky where the sun is peaking out through grey clouds every now and then, but I answer all the questions about my myriad of medications and then a new question: “Are you feeling stressed?” Well, that came out of left field. I explain to the nurse that I’m a little on the ‘high strung’ side, so I’m always feeling stressed, but now she wants a number “…on a scale from 0 to 10, where 0 is blah, blah, blah”. I’ve been using that scale for years, but usually to measure pain. Stress? Oh, heck.. I don’t know, I think I always hover around a 3, but it’s more like a 5-6 right now. “And what is your main stressor today?” [Enough with the questions, lady!] And then I just blurted it out: my husband. I felt like I’d just betrayed him somehow. I mean, I’m in an oncologist’s office and my biggest stressor is my husband?
She leaves me alone with my guilt while I wait for the doctor. The ‘skinny’ thing, the ‘hair’ thing, and now this. Yes, I AM a monster.
Dr. R. comes in. After the initial pleasantries, I whip out my papers with numbers, facts and questions. He is happy that my White Blood Cells haven’t gone up much and my Red Blood Cells haven’t gone down much in the last 3 months. I had noticed that the 3 tests that should read zero (but haven’t for 2 years) have gone up and are more abnormal, yet still only have the A for Abnormal as an indicator. And THIS is why patients have to look things up on the web.
I start asking Dr. R. about my new symptoms and if they are related. He tells me he doesn’t know. I ask him several other questions about this ‘condition’ with the long name: Myelodysplastic/Myeloproliferative Neoplasms – Unclassified. After several “I don’t knows”, he suggests that I go back to Johns Hopkins and see the oncologist there on a more consistent basis because he feels like he’s doing me a disservice because of his inexperience with this rare disease.
Yeah, I’ve got all kinds of red flags going up in my brain. “Rare disease”? “Johns Hopkins”? What IS wrong with me? Months ago, I had a bone marrow aspiration to find out if I have Leukemia and I don’t. He said it was like a pre-Leukemia, but if it morphed, it would be to a very treatable kind of Leukemia. The last two visits with him and the one at Johns Hopkins for a second opinion all gave me the same cold oatmeal generic feeling: It’s SOMETHING, but not something to be worried about. Now I’m wondering, Are we not worrying because we don’t know what we’re doing?
So I move along to my last question: I read that Myelodysplastic/Myeloproliferative Neoplasms is cancer, do I have cancer? “Yes”, he says, as matter-of-factly as if he were telling me about the rain outside, “A neoplasm IS cancer, so let’s just start calling it cancer from now on.”
I’m kind of annoyed. No, not annoyed – more like shocked. But in a calm voice I ask, Why hasn’t anyone used the word ‘cancer’ until now? “This is why you should be going to Johns Hopkins”, he tells me. Yes, I probably should.
“How’d it go?” my husband asks. Oh, you know… the numbers were still in the safe range, nothing to worry about. But Dr. R. wants me to start going to Johns Hopkins for at least 2 of my 4 quarterly visits. He said he’s doing me a disservice, he’s only seen 2 or 3 people over the span of his career who have this and Johns Hopkins has exposure to more patients, so they’ll be more helpful. “Okay,” he says. Then I tell him how Dr. R. told me “neoplasm” means “cancer”, thinking this is not news he is going to want to hear, but he says, “Yeah, I remember him calling it cancer before.”
What?? I don’t remember this at all. I know I have memory problems, but how could I forget something like this?? I’ve never even looked up anything about cancer on the web, nothing but “Leukemia” has ever been a concern for me. This is mind-boggling, and a little Twilight zone-ish, but I react with my usual contrived easy-going Oh, really? attitude that makes my husband feel more comfortable with my diseases, especially this one.
Once home, I look up the words “neoplasm” and “cancer” to check if they are related the way Dr. R. says they are. They are… in the technical sense he mentioned.
Neoplasm means “new and abnormal growth of cells, especially as a characteristic of cancer”.
Cancer is defined as: “Abnormal cells that tend to PROLIFERATE in a part of the body”.
But only a little cancer.