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.

(Nurse) Friend for a day

Well, actually, she was only my friend for about an hour and a half, but she made my bimonthly therapeutic phlebotomy as pleasant as can be yesterday at Baystate Health, where we chatted away the time about this and that and touched on such important topics as my nurse Lynn having the same name as my mother, only spelled differently.

It was much better in the new location in a hospital setting as opposed to where it was formerly done in the blood donor center.

My nurse, Lynn Schwartz, and me

I had a bed and a nice nurse to sit with me, and although this is not a good photo of me, I am posting the selfie for fun.

(Note to grammar checkers: I double checked the most common use of bimonthly and it is every two months, although it can also but less often mean twice a month.)

I always felt out of place in the blood donor center, where through no fault of my own I am dumping blood rather than donating it like the good souls in the other chairs.

Plus, the nurses who I dealt with yesterday understood where I am coming from and took the time to reassure me by giving me a second finger stick when I was not happy with the hemoglobin count from the first one.

To back up: One time when I went to the donor center for this procedure, my hemoglobin measured 11. My orders from Dana-Farber required it to be 11.3 or above, so they said they couldn't do it. Also they seemed to forget why I was there, because the phlebotomist, when seeing the low level, said, "Good news, you don't have to be drawn."

I had carved out a chunk of my day to do this, and I asked if they would please recheck it because previously this had happened at the Kraft Blood Center at Dana-Farber and when they rechecked after I warmed up my hands, it was fine.

The phlebotomist made a big production, calling in her supervisor and even paging a doctor, who all said it was a good stick and they saw no reason to take the seconds needed to try again.

Yesterday the finger stick showed 11.4. It was high enough to draw, but although I know realistically that after six years I am safe, an aberration can still put me into a reflexive panic mode. Just a few weeks ago my tests at Dana-Farber showed a normal level, (12-something, in the low normal range of 12 to 15.5, but normal is normal) and I wondered how it could drop so quickly.

The nurse who had tested it yesterday let me run my other hand under hot water and sit on it for a minute or two, and viola`, "You'll be much happier this time," she said, because it read 12.2.

I could have had an extra-strength day by taking the Exjade in the morning, but I treated myself to a day off.

Lynn said to take it easy for the next 48 hours. I wondered if maybe I could just go Pilates today because that it not too strenuous. She said that actually it is, and I said, oh yes, the hundred...

Struggling to stay awake at the end of my short drive home from Springfield, I pulled into the Big Y parking lot in South Hadley to take a nap.

This morning, a cup of coffee and a piece of orange almond cake at the Thirsty Mind while writing a piece for the Vassar Quarterly helped pick me up. Twice around the lake and a walk through campus with Maddie and a friend saved me from following up on my notion that I should at least go to the pool.

Appointments and more appointments

I previously wrote that I was a genius in scheduling three appointments on one day, but it wasn't really so.

A reminder phone call alerted me to the fact that my checkup was Monday (day before yesterday), whereas my dermatology appointment is next Monday, so I will end up going back and forth twice after all.

No damage done. The checkup, followed by the therapeutic phlebotomy, was enough.

My counts are good, with platelets still still a little lower than normal but good enough considering that they were at rock bottom. My liver function is actually a little better. Melissa said we could talk to Dr. Alyea about maybe going down even lower on the prednisone. (I'm pretty low already  at two mgs. a day.)

Dr. Marty always seems to find me in the waiting room. I'm just sitting there reading and I look up and see his smiling face. He came over to Dana-Farber to see me and then had to get back to the hospital. It is always a tonic just to see him.

I took my printout showing the good red count over to the Kraft Blood Donor Center to get the blood removed in the continuing effort to reduce the iron overload in my blood. First thing the phlebotomist wanted to do was stick my finger again to test my blood. To which I said no thanks. She called a supervisor over and the supervisor told her to check her folder on me. Much rustling through produced the paper showing my hemoglobin at 11.7 – well above the 11.3 cut off mark. You really have to advocate for yourself.

I usually plan to spend the night because this procedure makes you anemic and therefore tired. For some (silly) reason I thought I would just head home and didn't even announce my presence in Boston. I got only a couple of miles, realized how tired I was, and called Diane from a CVS parking lot. She didn't answer. I fell asleep right there.

Luckily she was indeed home. I made it there and fell deeply asleep on the couch. By the time I woke up it was too late to drive home, so I stayed for dinner and the night. Diane grilled salmon, which always tastes better than when I make it. I usually overcook it, which is my way of preparing many things.

I asked her how long she cooks it and said, "Don't tell me to cook it until it's done."

David was in the living room, and they said in unison, "Cook it until it's done."

Blood tests, biopsies and other fun things

I had two more possible squamous cell cancers removed today in a "scoop biopsy"  – one on the top of my left hand and the other on my left forearm – mirroring the one on my right are from three weeks ago, so that if nothing else I will have symmetrical little scars.

In the "what was I thinking" department, I planned to go home tonight, but I am staying in Newton instead. I forgot how much these things sting for at least the first 24 hours. For some reason the one on my hand is also itchy, so I took an oxycodone and a Benadryl. I definitely expect to sleep well tonight.

The dermatologist also froze several spots on my face, proclaiming that I had gotten the royal treatment.

Earlier in the day I had a checkup with Melissa. I had been a little anxious when a previous test revealed slightly lower numbers. They are still not back to their most recent high,  but Melissa said not to worry, they are all fine. Since I am not trading in money and the only investment is in my comfort level, I will have to let it be.

White count: 9.1 (normal=3.8–9.2)
Hemoglobin: 11.3 (normal=11.9–15.0)
Hematocrit: 32.8 (normal=34.8–43.6)
Platelets: 127 (normal=155-410)

This was going to be my big three-month interval between appointments, but I went back after two anyway with concerns on my mind. We're just going to keep it at two next time because there are so many things to monitor.

Next Monday I have two more appointments with different specialists, so back on the Pike I will go.

Stupid virus

Last Monday I wrote that, due to impressive counts, I was “promoted” to every other week clinic visits instead of every week. I had a little separation anxiety, but it didn’t last long, since I was quickly “demoted” to every week.

That’s because once again I tested positive for CMV, a virus that often pops up after transplant when your immune system is weak. The virus can lower your counts, as can Valcyte, the drug given to fight the virus. I had already been through this in October, when I had to take Valcyte for so long that my counts were in the basement.

So I went into Boston yesterday for a 1 p.m. appointment to get my counts and the viral level checked, not really anticipating too much change since it was only a week after my previous visit.

My white count (3.1) and platelets (112) had only dropped a little, but my hematocrit was 23.8 (and hemoglobin 8.5), meaning it was transfusion time. A few days earlier I had huffed and puffed going up the stairs, making me wonder if my red count was dropping. But I’ve been walking without any fatigue, although I did feel exhausted after Thanksgiving dinner.

In any case, due to a backlog of patient visits after the missed day of appointments on Thanksgiving, the blood wouldn’t be ready until about 7 p.m. This meant arranging to stay with Diane in nearby Newton and making sure that, back home, Katie and the dog had a place to stay. Everything quickly fell into place, thanks to my wonderful support network.

The whole afternoon was ahead of me, and although I had a book, I couldn’t see spending any more time in the waiting room. I had envisioned a quick clinic visit followed by a short (masked) trip to the Chestnut Hill Mall to return a shirt. I figured I might as well go to the mall while I waited for my blood. On the way to the mall I got a coffee and a scone (I was pretty tired but not too tired to proceed), and, when I arrived at the mall with some coffee still left, I didn’t want to waste it.

So I put on my mask and took the coffee cup into the mall, pausing now and then to take a quick sip underneath the mask. Still wearing my white patient ID bracelet, I went into JJill to make the exchange and try on something else. I had to wonder how I looked: A masked woman with a hospital ID bracelet, holding a shopping bag and maneuvering a coffee cup.

After a quick stop at Diane’s to charge my cell phone, I went back to the clinic for the transfusion, starting a little before 7. Diane’s husband, David, dropped her off at the clinic around 9, and she drove me back to her house for tea and cookies and a good night’s sleep.

I’ll be back at the clinic next Monday. Woohoo.