I was very rusty last week when I resumed some of my activities after a month off except for walking.
At yoga, I did something I rarely do: Glance repeatedly at the clock. My thoughts as I was doing the poses tended to the "get me out of here" mode, but I did not dash out the door or even topple over, and afterwards Erin said she thought I did well.
At tennis, I made some good shots, but I also missed a lot and even whiffed a few. It was a friendly round robin, and at least I was able to joke that I pitied the person who ended up with me first. Everyone was good-humored about my mistakes, but still, I did ask myself, in a not very helpful way, "How am I going to continue being 3.5 if I play like this?"
I had met with a trainer at Planet Fitness to devise a routine, so I did that once, and it wasn't too bad.
As for running, I went a couple of times for only about a mile, but it was more like a dog walk, because I took Maddie and alternated between having her off the leash and stopping to call for her, and having her on the leash and at points feeling like I was dragging her along. The colder weather does not inspire me to get out there, but if I'm going to keep at it, I'll need to pick it up again sometime soon.
Maddie pretty much finished getting the peanut butter out of the bone that our friends Jim and Jane gave her for Christmas, but she didn't want to let it out of her sight when she took a break and curled up with one of her favorite toys.
We're not sitting in the same room, but still, we are connected.
We have lit the menorah, sung the prayer and watched the candles burn.
And occasionally we wander into the other's room and comment on something they are watching. For example, "Charlie Wilson's War" leads to short conversations about the history of our presence in Afghanistan.
Yes, we're not sitting down at the table (but hey, we did do it last night). So although we are in separate rooms, we really are kind of together, albeit in a kind of strange way.
Joe, Youth Initiatives Coordinator at the American Cancer Society, posted the following little poem on the Coaches vs. Cancer Massachusetts page.
I'm not going to add to it, because it speaks for itself, except to say that I'm very proud of the work he is doing to help raise awareness and money in the fight against cancer.
'Twas the week before Christmas and througout the state,
Students and workers have a lot on their plate.
The weather's so cold we can't get out of our beds,
While visions of vacation days dance in our heads.
But let us remember those with less fortunate fate, And let's continue to cure cancer at an amazing rate!
Host a Coaches vs. Cancer event; it's what's right,
Merry Christmas to all, now all join the fight!
The more I need done, the more doctors I accumulate, and the busier my check-up days become. I have become a master scheduler, cramming many visits in during a day or two rather than driving to Boston for scattered appointments.
Makes sense, I suppose, unless you consider the fatigue factor.
I had four appointments Monday, starting at 8 a.m. and ending at 4:45 p.m., and one appointment today.
Monday morning, I took the T from Diane's to my first appointment to see Dr. Iwamoto, the surgeon who applied the graft under my eye, near Mass General Hospital. She said the graft was attaching nicely and told me to return in two months.
From there I walked over to Mass General and caught the shuttle that goes to Brigham and Women's, and then went to Dana-Farber (basically across the street and around the corner) for my 9:30 blood draw. I had a 10:30 appointment with Dr. Alyea, who pronounced my counts good (except for platelets, low but not worrisome); due to blood work a couple of weeks ago, I knew I was fine, but it was great to hear it from him. He told me I could go two months until my next appointment, a little more loosening of the leash.
He gave me a big hug and then as I started to walk down the hall, Dan DeAngelo, my first doctor, came out of a room and gave me one of his big bear hugs. I had known he was around, because I heard his distinctive laugh in the hallway as I waited for Dr. Alyea.
Next I ran back to Brigham and Women's for a quick lunch at Au Bon Pain with Margaret, who was in the area, and then returned to Dana-Farber for a 2 p.m. appointment with Dr. Goguen, aka the tongue doctor. As I waited for her, I leaned my head back against the wall and fell asleep. When she came in, she said, "Sorry to wake you." Well, she was just doing her job. She said my mouth looked good.
Next stop: Free food!
On the way up, I had seen them preparing for a dessert reception in the lobby for staff and patients. I wasn't going to miss that. I got on a humongous line that snaked around to tables laden with amazing-looking layer cakes, cookies and a token amount of fruit. The servers were piling one piece of cake on top of another on everyone's plates. I got two pieces of cake and one piece of pie, plus coffee, with thoughts ranging from, "You deserve this" to "This is a little bit much."
What can I say? The carrot cake, rich chocolate layer cake and mixed-berry pie were delicious. I walked back to Brigham and Women's and my last appointment of the day on a sugar high, feeling like my head might disengage from my body and float away.
This appointment was with Dr. Shoji, an incredibly nice man who did the umbilical hernia repair. He said I could resume all my activities (hooray!) and told me I didn't need to come back at all, unless I wanted to show off my improved belly button.
Almost done...I walked about half a dozen blocks to the T and returned to Diane's.
Today I drove back downtown to see my dermatologist, Dr. Lin, who zapped off (with a freezing technique) the spots on my face that could turn cancerous as two others have done. She repeated that this keeps happening because, due to continued use of prednisone, my immune system is not operating at full capacity. She prescribed a new cream and said that if that didn't work, she would like to burn the skin off my face in two months.
That's not how she put it – it's called PDT – or Photodynamic Therapy – but I know that is exactly how it feels, because she did it about a year ago with good, though not lasting, success.
She scheduled it for Feb. 14, her Valentine's Day present to me.
Now that I am finally alert after last week's only post, in which I wrote about trying to stay awake, I want to share some wonderful news.
My son, Ben, has become engaged to a wonderful young woman, Meghan, who I am so happy to now call my future daughter-in-law. Everyone knew they were going to get married, and some of us even knew exactly when he was going to propose, but it was incredibly exciting to get their call, on speaker phone, in which they told me that he had surprised her with the ring...and that she had said yes!
Last night we gathered at Diane and David's and gave a Champagne toast to the newly engaged couple. It was actually an early Hanukkah party, so we lit candles, exchanged presents, and toasted everyone. Diane set a beautiful table, and D&D, as people call them, served a terrific meal.
It was the first time I had seen the ring, and I couldn't take my eyes off it, sparkling on Meg's hand.
I don't use many exclamation points, but the occasion warrants it, so, here goes:
It's been a long, long week in which my Circadian rhythm was totally disrupted.
The good news is that I got a spot tutoring students in Springfield elementary schools, for pay.
The bad news is that although I signed up for after-school hours, there were more tutors than students, and if I didn't take the 7:30 a.m. slot, I wouldn't get to do it at all. I need to be there early, so with travel time that means leaving at around 6:45 a.m.
Welcome to the world, you say?
Well, for the past 30-some years, my world has always involved later work shifts. When I left the Republican, I worked from 10 a.m. to 6 p.m., and when I first started, we went in around 11 and left at 7.
Common sense says to just go to bed earlier, but when you stay up late like I do, it's hard to just make yourself go to sleep earlier. Plus, it was a busy week, with a tennis party Tuesday night and a concert at the Iron Horse in Northampton Wednesday, and I wanted to go to both.
Wednesday didn't start so well. I stumbled out of bed and made coffee and a piece of (overdone) toast, which I ate in the car. I cut my lip on the toast and only realized it when I felt blood dripping down my face. I managed to stop the bleeding with a tissue and got to my assigned school in Springfield in one piece.
We were assigned our groups, and I got six fourth-graders. There was basically time for introductions and giving them a test which they did in class to assess their level. On the way home, I had to pull into the parking lot of the CVS in Holyoke and take a nap. When I got home, Joe was having car trouble and needed a ride to the West Springfield repair shop where his car was towed. After he got his rental, I fell asleep again in my car.
Thursday morning began with me trying to carry coffee and the bin of student booklets out the door in the dark and dropping my keys in the dog water near the door. Big splash of water on the floor, left for later.
In school we began work on a unit in capitalization. I passed out booklets and walked around helping them. When the bell rang at 8:30, the kids threw their stuff down on the table and ran to breakfast. One little girl stayed to help me, gathering everything up and offering to carry the bin downstairs for me. I am already falling in love. Next week I will stop a little earlier and tell them they can't leave until they clean up.
On the way home, once again I couldn't get any further than CVS. After my 15-minute catnap, I got home, threw down my jacket, took my shoes off and crawled into bed, setting the alarm for 11 a.m. Every time it went off, I set it for another half an hour. I set it for 12:30, but it never went off, because I saw later that I had set it for a.m. Who knows how long I would have slept if Ben hadn't called at 1?
I sat down on the couch at night and told Joe I was so tired, I was scared the leukemia was coming back. (This when I know full well that my blood test a couple of weeks ago was fine.)
"Are you serious?" he asked, or some such thing. Probably I was not serious, but it's a thought that pops up, and then when I say it and someone (or myself if I'm the only one around) sets me straight, I can let it go.
Hopefully next week I will do better with sleep.
Despite the fatigue, I have to say that Wednesday night at the Iron Horse was worth it. I saw friends from work and heard a great opening set by Scott Kempner and then the show by Elliott Murphy and the Normandy All Stars. It was great rock n' roll with folk undertones, and everyone was clapping and at some points singing along.
And I thought, "I am not in the hospital. I am here and alive and listening to music with friends, and I am really really happy about that."
Got this encouraging e-mail from Melissa yesterday: "Your labs are a bit better! Looks good."
I was already preparing for the opposite and getting bummed out. Goes to show you the waste of time in predicting your lab results. I was pleasantly surprised because it was not what I expected.
I would not have been major bummed out, just minor dispirited. That's because my concern was not about anything big but rather about the management of my ongoing Graft vs. Host Disease.
Melissa had told me that the labs from my pre-op tests a couple of weeks ago showed that my liver enzymes were up a bit (the wrong direction). She said I should get retested, which is what I did on Thursday.
The way it's been going, every time I get down to taking 5 mgs. of prednisone a day, my liver acts up and I have to increase the prednisone, which I have now been on for longer than I can even remember.
Staying on prednisone means having a lowered immune system and staying on several drugs that I take to prevent different problems that I've had in the past.
I really had every reason to suspect that higher numbers a few weeks ago meant higher numbers now and a need to increase the dose.
But tada! It didn't happen that way.
So I can stay on my 5 mg. and reevaluate when I have my next appointment in a couple of weeks. And I am NOT going to spend time thinking about what will or will not be.
First meaning: “On pins and needles,” an unpleasant nervousness before an event.
Nowadays it can mean “upset stomach,” “feeling antsy,” or “impatience.”
I am back from a walk in the rain with the dog, my wet sneakers all squishy.
I had an umbrella in one hand and the leash in the other, and although I thought about making a second loop around the lake, my arm with the umbrella was starting to hurt me. If I had just been running in the rain, it would have been easier because I would have hit a stride, sans umbrella and leash. (Sorry, Maddie.)
Still, I probably would have walked her separately, because although she's not so young that she needs to get a good exercise walk every day, I feel it's my job as a pet owner to take her.
I am at that point in a period of limited exercise when I am feeling antsy. The hernia operation was a week ago Monday; I'm not supposed to do much but walk until I see the doctor again on Dec. 19. I've found myself taking little jogging steps across the kitchen and around the house. I jogged to the car and was about to take off in the supermarket when I thought better of it. When walking the dog, I jogged a few steps along the path.
It's like there is a little "on" switch that I couldn't push all the way to "off."
Yesterday I lifted some weights in my room and did a few stretches not involving my abdominal muscles, but what I really need is to run around.
I know, of course, that it could be way worse and that this is nothing in comparison to big stuff, but the accumulation of little things (teeth, tongue, etc.) definitely adds to the overall wear and tear.
But hey, the fact that I am restless is a sign that I'm feeling better, because a week ago, I wasn't much in the mood for running around at all.
A friend recently told me that while undergoing chemotherapy for treatment of breast cancer, she had bought herself a present after completing each round.
This sounded like a great idea to me. It doesn't work that well for leukemia, because when you are finished with a round of chemotherapy, you are so depleted that going shopping is the last thing you want to do. I did, however, get a lot of nice gifts when I was in the hospital. And I try to schedule in something fun in connection with my frequent trips to Boston, and sometimes, when I started feeling better, that something fun often involves going shopping.
I thought of my friend's words yesterday when I went to a "brunch and buy" where the theme was hand-made holiday gifts. Everything was beautiful. I thought I would be able to make it out the door cheaply by buying a just a desk calendar with a photograph a month, but then something called me back.
It was a collection of silver watches on bracelets made of beads and big, colorful stones. I tried on one in "my" color, blue. I joked with Bev, the tennis friend who makes the jewelry under the name Big Mouth Beads, that perhaps I owed myself a hernia repair present.
Like the eye surgery that had turned out to be more than I expected, the hernia fix has involved more in the way of continuing pain than I had thought it would. I hadn't taken any oxycodone before driving to Longmeadow for the "brunch and buy," because you aren't supposed to drive under the influence. By the time I left, the site was really hurting, so I was definitely in the mood for something to pick me up.
Hence, the blue and silver watch, my gift to myself on a day when I had thought I was going shopping for other people. Oh well, these things happen.
I liked the way it caught the light on my drive home, helping to keep my mind off the pain. It looks magical.
But there is a problem: I need to think of something else to call it other than my "hernia repair watch." It's too pretty to have such a connotation.
When I went to the eye repair shoppe Wednesday (otherwise known as the office of Dr. Mami Iwamoto (the surgeon who repaired the hole under my eye), the doctor said the graft looked good but that I should really get in there and knead it like a piece of dough, pushing it in towards my nose.
That was funny because I've been so careful about not touching it. It kind of hurts my nose when I push on it, but that's what I need to do, twice a day, I guess to get the graft to fit better into the contours of my face.
The weather has been nice, so despite pain at the site of my hernia repair (pretty much dulled by oxycodone), I've been walking a lot. Yesterday I had coffee with a friend who lives in Newton, and last night Diane and I went to an interesting presentation hosted by a Meetup group called Chicks Who Write. Meetup groups are gatherings around the country involving people who want to network on a range of topics.
The speaker last night was a widely published writer, Ethan Gilsdorf, whose topic was "Writing Killer Pitch Letters."
It's about 5 on Friday and I'm sitting at Diane's table waiting for Katie to pick me up and drive me home. I'm going to take her to the bus stop tomorrow so she can get back to school.
Then I'm going to sit at my kitchen table writing pitch letters, hopefully of the killer type.
This blog is about falling down and getting up, coping and coming back after four bone marrow transplants for Acute Myeloid Leukemia, or AML, starting in 2003 when I was diagnosed after feeling winded while running a 10-K road race. I have three children, Ben, Joe and Katie, and one Labrador retriever, Maddie, short for Madison, as in Madison (Ave.), in honor of my hometown, New York, New York.