The trouble with (some) words

Newton haircut

While taking a little break from blogging (laying low) I did some of these things in a discombobulated way, not in order of occurrence: went to spinning straight from Boston in my street clothes, went to yoga in my tennis clothes, took a fabulous 20-mile bike ride on the Allegheny Rail Trail (part of long weekend in Pittsburgh and Hidden Valley, great friends, great food), naively/insensitively posted on Facebook and tweeted about a complaint I had with a company when I should have sent an email, got slammed, insults flying at me that you would never say to someone's face (fuckwaste of a human being, seriously?), did the wrong things (over engaged, overreacted) when, according to this timely post How to Deal With Twitter Drama, I maybe could have engaged for a little while but then should have walked away as the stress level climbed and I even cried; then, following advice of a son who said to think about why I'm tweeting (to promote myself as a writer and comment on the things that interest me, also, cute dog stuff allowed) — and who suggested going back and deleting all the threads of the conversation — went back and cleaned the slate, took a break, and restarted and rebalanced by sending positive vibes to the universe, complimenting other writers or liking and retweeting good advice and thoughts and Democratic points of view.

Since that might have been the longest sentence I ever wrote, time to start another. Gave the pep talk to another Dana-Farber patient who relapsed after bone marrow transplant (connection through the One-to-One program in which those of us who've been there help out those going through it), and she said she felt a lot better.  I said, as I said to previous patients, that I don't know if I should tell her every crazy thing that happened to me because I don't want her to get it in her mind that the same could happen to her, but that I would tell her if she wanted to know, to point out that I'm fine, going on eight years, and she said yes, please tell, because she needed to hear about a good outcome despite twists and turns. I told her what my nurse Vytas (who I miss so much), always said when he sat on my bed and called me Nervous Nellie: "They'll figure it out."

I sent some reading material, including Complex Case Study: Four Stem Cell Transplants for Acute Myeloid Leukemia (AML), in which my Dana-Farber caregivers explain the whole thing from its start in 2003. She asked if she could call and I said of course.

Interspersed with all of this, I managed to go to ECP, get a Newton haircut, go out to dinner with friends and see a great play at The New Century Theater in Northampton, play tennis at the Canoe Club before it rained, walk the dog, and watch Wimbledon, including the tremendous women's final.

Some other thoughts on parsing sentences and phrases: As previously noted, my skin condition backtracked after I extended the time between ECP sessions to three weeks instead of two. I quickly returned to two, but my skin has not bounced back to where it was. I showed Ellen, the PA, how the skin on my abdomen had hardened again (a result of the graft vs. host disease of the skin)  and she said she thought it might be something internal because my skin is OK.

"It's nothing to worry about...for now," she said.

"For now?" I asked. "What does that mean?"

She said it's just something they say.

I repeated this to the two nurses taking care of me and asked, "Does she think I have ovarian cancer?"
They both said to forget about it, it is common for your skin to take a while to soften up after backsliding. One of them said that the PA's modifier was like saying, "Your house is not going to burn down...for now," "That bus is not going to hit you for now," and, adding some more to make me laugh, concluded it was just a case of CYA (Cover Your Ass). Hello healthcare providers: This is not helpful.

Then there were the words the hairdresser told me upon parting, when upon the recommendation of a friend, I got a Newton haircut. I asked what he was going to do, and he said, "Give you the best haircut you ever had." It was a great haircut (twice the price of Western Mass, though), but he said a kind of odd thing, telling me that from looking at me he knew every bone in my body, which is why he can give a good haircut, and at the end of our visit saying, "I sense a lot of fear."

Say WHAT?

These things are the reason that when driving home Thursday and realizing I didn't have time to go home and change for spinning, I went straight to the Y in my street clothes. Luckily I had my biking shoes in the car.

It was so humid that the fitness class was canceled, but while sweating like crazy, I felt my brain calm down.

At night, another strange thing happened.

I heard a crash in the hall outside my room, but, half asleep,  I didn't get up to investigate. I thought maybe a robber was out there and wished Maddie was a barker. Then I decided it was just a house sound and drifted back to sleep.

In the morning, on the wall where an antique mirror in a wood frame used to be, there was only a piece of wood hanging from a wire. I looked all over and couldn't find the mirror. OK, I thought, so someone had come in and stolen the mirror. Then I saw it face down on the other side of the room. As I went to get it, I said, please don't let the mirror be broken, because then I would have worried that I was going to have seven years of bad luck.

Thankfully it was all in one piece so I had one less strange thing to worry about.

Life in the 'big house'

This is a nice hotel, which is a good thing because I’ve been here three weeks and may not go home until after my new transplant, which is now scheduled for Jan. 30.

I wake up at least twice a night drenched in sweat, and help is only a buzzer away. A PCA (personal care assistant) comes in with a new hospital gown, and I sit in a chair while she changes the sheets. It’s just sweat, but I told her the other night, “I feel like a little kid.” When she is three-quarters done making the bed, I climb back in and she puts a clean sheet and new blanket on me and tucks me in.

Bright and early, a nurse comes in with my pills.
“Your pills, madam.”
Well, more like, “Good morning, I have your morning pills, how was your night?"

The list:
Labetalol (for my blood pressure, which rose when I came into the hospital), Prilosec (antacid), Levofloxacin (antibiotic), Tricor (for high cholesterol, also new for me), Valcyte (anti-viral to treat and prevent CMV), Voriconozole (anti fungal for the pneumonia), Lexapro (anti-depressant), folic acid, multivitamin and sometimes magnesium.

Then a nurse or the unit coordinator brings me coffee, mustachioed Steve drops off the New York Times, and I lounge half the morning and then go do my 20 laps.

I get platelets or blood every few days or so, and, as needed Ativan or cough syrup with codeine. Sometimes I feel like I’m being held together with tape. On some days I thought I would write but I could barely find the keys, and my hands shook. I get Benadryl with every transfusion, and I’ve also had some Demerol when a fever was coming and I had the shakes. But my fevers have decreased, and they discontinued the Demerol in favor of warm blankets, which are really comforting.

The other night there were workmen in my bathroom after midnight doing battle with a leaky faucet. I said I didn’t mind the drip that much, and suggested they return the next day. They kept at it for a while and then did come back the next day, I think around 8 a.m. A woman came in to do another EKG, and I said, “There are men in my bathroom.”

She eyed me as though she thought I was delirious, but as if to humor me, she went over and knocked on the bathroom door. Sure enough, two workmen were squeezed in there. She told them not to come out until she finished the EKG.

The pneunomia is continuing to clear up. I can take a full breath without coughing, and the oxygen saturation that they check with my vital signs is nearing normal again. A week ago I couldn’t get past about 85 percent, and I went on oxygen for a little while one night. Now I’m back up around 98 percent.

A hairdresser from the Friends Boutique at Dana-Farber is coming to give me a haircut this afternoon. I hope that’s as exciting as the day gets.