Easy peasy (kind of sort of)

Still life, real life

A friend drove me to Dana-Farber Wednesday, so I have no complaints about the driver.

First stop was 11th floor, head and neck oncology, to see Dr. Goguen, "the tongue doctor" who scooped out a piece of my tongue that had dysplasic, or pre-malignant, cells on it. That was in 2011, on Katie's birthday. I have gotten checkups once a year for a while, and the doctor said it looks fine and can now be checked just by my dentist or my regular doctors.

A physician's assistant who was with her asked if my skin had been darkened by chemotherapy or the sun. I said I thought it had changed a shade after chemo. Either way, she said I looked healthy.

On to ECP, I didn't start right away because my hematocrit had been low last time (from bleeding on the head, caused by Mohs surgery on a squamous cell), and they needed to check it. I had forgotten to get in writing the test results from a finger prick that I got at Dr. Berger's office when I had my stitches removed. I called the office but my doctor's nurse was on vacation and didn't leave a forwarding number. I called another nurse and left a message. She got back to me and said they measure hemoglobin, not hematocrit, and it was 11.

The nurse who did the test originally, as well as the second nurse, couldn't tell me the hematocrit. I thought that was odd because all you have to do is look up the ratio of hemoglobin to hematocrit.

Hemoglobin and hematocrit are parts of the red blood cell.

Hemoglobin is the protein contained in red blood cells that is responsible for delivery of oxygen to the tissues. The hematocrit measures the volume of red blood cells compared to the total blood volume (red blood cells and plasma). 

In general, to get the hematocrit, multiply hemoglobin by three.

At ECP they want the "crit" to be 27. Last time it hovered a little under, but they did the light treatment anyway.

Although I had gotten the hemoglobin from my doctor, the nurse at the Kraft Blood Donor Center had already sent my sample (after two tries because the needle hit scar tissue). It was 33. (Eleven times three!)

So I got the info from two sources that I was good to go.

My friend was standing at the end of the bed while this was going on and continued to stand there while I got hooked up to the machine that my blood would flow into for my the "internal sunburn."

I said he might want to sit down. I felt better after he did.

I just can't ask someone to drive me every other week, but it sure was nice to have a break.

Not enough room on patient history form

I would have a week off from Boston if not for my consultation tomorrow at the Mohs and Dermatologic Surgery Center at Faulkner Hospital. I could have tried a back-to-back with ECP next week, but I wanted to take the first available, which is tomorrow.

Oddly, the squamous cell cancer on my jawline – the one that is the subject of the consult – has, at least on the surface, disappeared. Ellen, the physician's assistant at the Kraft Blood Donor Center, said she doubts that it will require surgery. But she doesn't like a flaky raised spot on the other side of my face and suspects that it may need to biopsied. (Thought process: Another biopsy would mean no tennis for the week. Funny that I'm more worried about missing exercise than I am about needles in my face.)

In filling out the patient history form, I had quite the conversation with myself.

For example, under the category "Emotional," they want to know if you have suffered from depression or anxiety attacks. I say to myself, "Wouldn't you, if you had my history"? Do I have anxiety attacks when I think that my fatigue is due to relapse or that each new suspicious spot is a melanoma? Am I sometimes depressed about what happened?" I check "No," because I am not currently suffering from these things. I erase and check "Yes," because I sometimes do.

Then, they want you to describe body location and month/year treated, and diagnosis for every non-melanoma skin cancer.

I write on one line: lip, neck, wrist, tear duct, all squamous cell cancers, treated with Mohs by Dr. Neel at Mass General, don't know the dates.

For the category Blood/hematologic, I don't know if I should check no problem or check anemia (low red blood cell count) and low white blood cell count. Do they mean now, in which case it would be no problem, or do they mean ever, for example when my red blood cell count was so low I needed transfusions and my white count was rock bottom when I had neutropenia  after chemotherapy? I go for checking the yes boxes.

You have ONE LINE to write if you have had cancer other than skin cancer. That is a challenge. I write, Leukemia, BMTs preceded by chemo, 2003, 2007 (2), 2008. (Sounds awfully close to BLTs, but I'm confident they will figure out my shorthand.)

Good news on the transportation front: This past week, I did not get that horrible Westfield Transport. I will never get the again.

My driver from a different service said that they were shut down. Apparently I wasn't the only one complaining.

As I write about my medical history, I realize I am violating one of the rules of news writing: Avoid alphabet soup. This is the use of too many acronyms.

My health forms, and my posts, are laden with them.

ECP (Extracorporeal photopheresis)
BMT (Bone Marrow Transplant)
PDT (Photodynamic Therapy, the thing when my dermatologist burns the skin off my face, like she will do again in April)
VATS (Video Assisted Thoracic Surgery, the time when they removed the aspergillus fungus from my lung in 2003 before my first transplant.

And, my own contribution:

DALOS (Definitely A Lot of Stuff)