Altering schedule creates domino effect

I think I forgot to say that they stretched out my internal sunburn even further, to every three weeks. They are pleased with the progress that I have made in the year that I have been doing this so that is why I get to go less frequently. (I have been trying to think of a good shorthand for the blood thing which is technically called ECP and since Dr. Marty asked "How is the internal sunburn going?" I think that is a good one.)

The memory feature on Facebook came up with a photo from a year ago when I was in a bed getting my first treatment. When I started, it was twice a week. I could not believe I was going to have to do this for three months. But as happens, time flew.

A friend wanted to know how long I would be doing this.

He asked, "For the duration?"

I said yes, though hopefully with decreasing frequency.

It is good to cut back even more, but it creates a domino effect. I need to call or email:

MART to change the dates of my rides,

Dianna, who schedules for Dr. Alyea and Melissa, to change the date of my checkup which I had made for this week when I am really going next week, and

Dr. Liu, an endocrinologist who I am seeing to talk about my bones.

I'm not sure I mentioned her. Dr. Alyea does not want me to get off prednisone. Never ever. It is only a small amount – 1 milligram – but as previously said, since it lowers the functioning of my immune system, I also take two preventatives, Bactrim and Valtrex. I am seeing Dr. Liu because prednisone can also weaken your bones and presumably she is going to suggest something to take to strengthen them.

When Dr. Alyea brought up this idea, he asked, "Have you seen an endocrinologist?" Which he followed by saying, "You've seen just about everyone else in here." I've also seen a few whose names begin with the letter L:

Dr. Stephanie Liu, dermatologist, Dr. Jennifer Linn, dermatologist, and soon, Dr. Eva Liu, endocrinologist.

Dr. Linn missed a spot on my face when she did the PDT (photodynamic therapy). It is a little thingie that I catch myself picking at. Ellen, the PA at ECP, said she didn't like the look of it. Jennifer (Dr. Linn) said she would get it with the face fry, but it didn't happen, and I don't think it should be left unattended because these things can turn into squamous cell cancer. Or maybe it already is.

I call most of these doctors by their first names except that I can never seem to be able to call Dr. Alyea Ted. Dr. DeAngelo was always Dan. Dr. Alyea is just more formal. Melissa will say about something, "I'll have to ask Dr. Alyea," never Ted. I don't think I ever heard anyone use Dan's last name. Well, I got that out of the way.

Sunday I was feeling forlorn and missing my children. A serendipitous encounter helped me get out of it.

In the parking lot at the Hampshire Regional YMCA, where I had gone for a pilates class, I pulled in next to a car where a mother was talking to her little girl as her daughter was getting into the back seat next to a toddler in a car seat.

"We will not play such and such when we get home," she said. (I can't remember the name of the game.) "You've already played it enough."

When I got out she was standing behind the car, looking soooooo exasperated.

We had a moment.

"I'm so glad I saw you," I said. I told her I was missing my grown children but that her situation made me remember it was not always perfect.

She said she was glad to see me too.

"I keep reminding myself that they will not be 2 and 7 forever," she said.

I told Katie about this over the phone that night. I said she and Joe were the WORST when I had to take them both to the grocery store. Somebody would always push the cart over someone else's feet or they would argue about who was going to push it and I would be so embarrassed at the checkout line because I could not get them to stop. And then they would argue about who started it. To this day that has not been resolved. (I'm not sure where Ben was in all of this.)

The scenes with Ben and Joe were different. Joe would go out in the driveway to play basketball or the game they created, tennis ball (with a bat and bases) with Ben and his friends or with Ben alone and I would say, "Don't make him cry!" Because that is what sometimes happened.

Katie said she remembers me saying, not just at the grocery store but whenever they were acting up or wanted something I wasn't going to give them, "No, and no, no, no no, no..."

Sunday morning wanderings

I usually go to Maggie's spinning class Sunday mornings at the Holyoke Y. It is quite a wake-up call and energizing and fun. But it did not happen today, so, for a total change of pace, I went to an alignment-based yoga class at the Hampshire Regional YMCA.

Sometimes people don't realize that most Y members have reciprocity at other locations. These two Y's have different personalities, each with something different to offer. I have their schedules side-by-side on my desktop. The people at the Holyoke Y know me better and have been wonderful and instrumental in helping me get back on my feet and stay there.

Whenever I have a new yoga teacher, that teacher sees that my left hand will not flatten out. As happened today, the teacher comes over and asks if I can undo my claw. Well, if I could, I would. I don't really say that; I just explain that I assume it is arthritis, which I think I also have in my wrists, because I cannot make a 90-degree angle between my hands and my wrists. It probably hurts my down dog because I don't have a good foundation. This teacher suggested, as others have done, to roll up my yoga mat at the front for more support. Also, she brought me over a chair when she saw that I had trouble balancing. I appreciated that.

I am thinking of going back at 4:30 for Pilates. Looking at the schedules, I realized that I could spend a whole day going back and forth between Y's, but then I wouldn't get anything else accomplished.

On my way home, I stopped at Breezy Acres and almost had a full lunch while Evelyn gave me samples of almost everything in her case. At one point I had four plastic forks in my hand. I came home with enough food for dinner...chicken soup, baked beans, antipasto and a new supply of my favorite apples, Macouns. I said I vowed to make some good soups this winter, but my soups always taste so bland and watery because I don't have a sense of what to add. I guess I could read a recipe.

Vanessa James, an old acquaintance who is a professor of theater at Mount Holyoke, was there, and the three of us talked about politics. Her son has an interesting job working for Joe Biden. We talked about whether or not Joe will run, and we agreed that after Hillary's performance in the #DemDebate, it seems increasingly unlikely.

When she closes for the winter, I'm going to miss going over there to our little community gathering place. I told this to Evelyn, who is always so cheerful, and she said not to worry, she's going to be open for quite a while longer. Also, there is always Tailgate Picnic.

Harsh words that I said to myself

Sometimes a critical voice comes into my head, such as this admonition when I walked up the stairs to a Pilates class at the Hampshire Regional YMCA this morning:

"Walk like a normal person."

Somebody was behind me, and I didn't want my slower pace to hold her up. I think I might have even mouthed the words or possibly even mumbled them. In any case I heeded them and walked up more quickly. I doubt it bothered the woman behind me. It was just bothersome to me. Not a problem in Northampton, although they might run you down on the stairs in the New York subway system. I am normal enough on the tennis court. Stairs are the last frontier.

Once in class I did well. I have caught on quickly. I even discovered another vertebrae in my back so that when lying down, I can touch more of my back to the mat, one section at a time.

After Pilates I rode a bike for half an hour, followed by a not too difficult decision on whether to lift weights or head to Woodstar before the Sunday morning crowds arrived. I chose the latter. Usually I bring my Sunday New York Times, but today, much to my annoyance, it was not delivered. I did get a paper: yesterday's, delivered today. I took my laptop instead.

I usually don't mind reading on line, but on Sunday, I like to spread the sections around and save what I want, usually the Book Review, for the next day or so.

I have had delivery issues before and am not alone in this for The Republican as well.

This is difficult for newspapers to control, but if they want to hold on to a loyal and dwindling print readership, they should devote more resources to figuring it out.

Pool time

"Sooner or later we all end up in the pool." – Bob Chipkin

I can just picture my friend Chip saying this to me as we were leaving the newspaper and walking out to the parking lot.

It was years ago and I had been complaining that my plantar fasciitis was keeping me from all exercise except swimming.

I guess that is a recurring theme for me. Some people have an "achilles heel" in an elbow or knee that intermittently gets re-injured. For me it is my feet. Not plantar fasciitis this time, but rather the pain in my toe and the top of my foot.

While I waited the couple of weeks for the appointment that I had Tuesday with a podiatrist, Joe kept telling me to wear the boot. I tried a little but quit because Dr. Holt had said it wouldn't help much and also because I didn't think i't wasn't doing much for my toe.

The new podiatrist said it is tendonitis with a couple of other things going on; he suggested giving it two weeks and then coming back for a possible shot...and wearing the boot. Dr. Joe said what did I tell you.

Yesterday I went to the Northampton Y thinking I was going to a Pilates class, but the schedule had changed, and I didn't realize I had gone into a yoga class. I did the first few minutes on the mat, but when she switched to sun salutations I had to leave because I can't put any pressure on that toe.

 I went swimming instead, doing some laps and some water jogging, which feels silly but is actually difficult and good exercise.

 It is hard for "normal" people to understand this, but the hardest part for me is actually sitting down on the edge of the pool without coming down hard on my rear end. I have worked hard on those quad muscles, but I think that even though I am on a low dose of prednisone, my muscle tone remains diminished.

I walked back and forth, scoping out the side of the pool and looking at the ladder, wondering if I should just climb down. But that isn't so easy either. I wondered if the lifeguard was wondering what my problem was.

While I am sidelined maybe I should do some wall squats or even repeatedly stand up and sit back down in a chair to work on those muscles. In the distant past I would just dive right into a pool. But then again in the not so distant past it was hard for me to even stand up and sit down once.

So thank goodness for being able to get into the pool tat all o stave off  shpilkes as much as possible.

Walking the way I walk

Someone was saying I walk funny: stiffly and almost like I am on shards and trying to hold myself together.

People mention this frequently, mostly out of concern as in "Are you all right?" but sometimes it sounds critical, which is probably just my thing, but it does occasionally come out in a tone that makes the question sound like, "What's the matter with you?"

I told Joe and he said let that person have leukemia three times (not to mention the coma, which I just did, thereby engaging in a pet peeve of mine by saying "not to mention" when I just mentioned it) and I am much better than I was a couple of years ago.

Someone who I briefly knew said I exercise too much and that he knew I was trying to keep my girlish figure, but still. Actually I am lucky to have my father's metabolism and so that although with age it is a little harder, my "girlish figure" (what a putdown) takes care of itself. This person said my gait was off. So it is. But did I ask?

I do the work like fitness classes because I have to do it to maintain my strength and the balance that I have, which is not the same as it was before cancer but not nearly as bad as shortly after my transplant when by all accounts I walked like a Gumby doll and people were afraid that I would fall over, which I frequently did.

 Maybe some day I will like these classes, but at this point they are a chore, although the Pilates class  at the Hampshire Regional YMCA is just perfect, and I wish that it was offered more frequently, and also the yoga class the Justine teaches at Serenity Yoga is wonderful too, and she always makes sure that I get a wall.

Did I say that the other day I squatted to get a pot out of the low cabinet and toppled over onto the tiled kitchen floor? Did I say that I lost my balance in my bathroom and scraped my arm? Did I say that even with the Neurontin, the neuropathy from chemotherapy causes me to never totally feel my feet on the ground?

I hate to think of what I would be like without all the exercising I do.

When I first got back to tennis (again), I was not so great due to these problems and also the weakness in my quads from prednisone and my lower red blood cell count.

But now that is normal and my endurance is good.  Now when I am on a tennis court, the tentativeness goes away, and after we play for our allotted time I could just keep going.

It is like someone with a stutter who sings, and that stutter goes away.

If only I could carry a tennis court around with me...

Feet firmly planted on the ground

When George tells me during tennis to jump, I am inclined not to ask "how high?" but to say to myself instead "no way."

My theory is that I was given long arms so that I could avoid jumping. Only kidding. Sort of.

I am mentioning this because earlier this week, when I returned to exercise class at the Y, the class started doing double jumping jacks, making me think I might just leave. (I had missed a month of these classes: two weeks for stitches in my right arm and two weeks for stitches in my left.)

But then I told myself: Modify according to your ability. So I took steps instead of jumps, and I warmed up enough so that by the time we jumped rope (minus the rope) I was actually able to get my feet off the ground the tiniest amount.

I am always relieved when we move on to lifting weights, although this is not my favorite thing either. I do it because with five-plus years of prednisone in my system, I feel like it is a health need for me to continue working on my strength since prednisone is known to weaken your muscles.

Also, years ago, even before cancer, my friend Jo, a personal trainer (the same Nurse Jo who removes my stitches), told me that none of us should just run or play tennis: We really need to do strength training also.

I am told by a friend who is into weight-lifting that if you do it enough, it gives you the same endorphins that you get from running, but that requires more commitment than I think I have.

I have also been told I should give Pilates another try. I much prefer yoga for its all-around benefits. Plus I can't take on the expense of another class.

The Pilates class at the Holyoke Y doesn't fit my schedule, but I did notice that the Northampton Y, where you can go with a Holyoke membership, has many more offerings.

In fact, as I am finishing this up at 8:30 in the morning, I should leave in 15 minutes if I am going to get to Sunday morning Pilates in Northampton. Sundays are for the New York Times, two cups of coffee, Meet the Press...

Will I be able to get myself out the door? Now that I have announced the challenge, I will try very hard.

Stay tuned...

You want me to do what?

My plantar fasciitis feels a little better, but I have still not gotten back to tennis, so I am spending more time at the Y.

A friend told me that the Total Fitness class wasn't too hard, and, figuring that I could use a little total fitness, I went to try it out Tuesday morning.

A woman who had taken the class before told me to get two sets of weights, a light and a heavy, set them down beside me. She said there are a lot of repetitions, so I should probably start really light; I grabbed two 3-pounders and two 5s.

The instructor jogged in, the music started blaring, and the class began. They did jumping jacks, they did lunges, they kicked and they jabbed side to side. They lifted their weights, lowered them, and lifted them again, pumping them while balancing on one foot and then the other.

Whoa!

I realized with some chagrin that I can do one, maybe two, jumping jacks. Lunges are not in my repertoire. And although I have been practicing standing on one foot (per orders of the physical therapist), I can't do it for very long, let alone while lifting weights.

I did modifications, marching in place and such while the others bounced around. Most of the weight lifting, actually was OK; I just couldn't keep up with the movements.

Afterwards, I learned that I had wandered into a "Power Sculpt" class. Clearly I am not ready for sculpting.

The woman who helped me set up said she was hanging around to take the next class, Pilates. I've only done Pilates once or twice, and since I was there, I thought I might try it again. My friend said it was much more laid back than the class before.

We got to talking, and she said she was a nurse on her day off. "I love nurses!" I said. I wasn't surprised that she was a nurse, because she had the same caring manner as many of my nurses. (During the Power Sculpt class, she had asked me mid-way how I was doing.) While we waited for Pilates, I gave her the three-minute version of my ordeal, and then I joked that I had the perfect excuse for my inability to hop around.

"I was in a coma. I don't do jumping jacks!" I said.

Or if course it could be that I still have not made a complete recovery from the three-plus months in the hospital, even though that was two years ago. At this point much of it probably has to do with muscle weakness from prednisone, but it doesn't sound as emphatic to say, "I'm on prednisone, I don't do jumping jacks."

In any case, it's nice to be able to joke about it.

I did stay for Pilates, which was not too hard and gave me a good workout for my abs, which I could use, due to the aging process, and again, to prednisone, which is known for giving you a little pot belly.

I drove home, pulled into the driveway, and fell asleep in the car.

I'm very good at my 15-minute power nap. Much better than I am at doing lunges and jumping jacks.