To wear, or not wear, the scarves, and other musings

My sister had lent my scarves to a friend who had cancer and wanted to know if I wanted some back or whether they would set off PTSD. I wasn't sure about the PTSD, so I said I'd give it a try. They came the other day. I picked one up, unfolded it, and made a bandit-style mask out of it. I folded it up and put it back in the pile. I'm still not sure. I can actually sense myself back wearing it. They served me well, so I don't feel bad about looking at them. But I'm not sure about wearing them. 

With Emily

People used to tell me, when I was bald, that my head head a very nice shape. I never knew exactly what to say about that. Thank you, I guess, but I didn't have much to do with it. When I was bald and shuffling along, Diane said I looked like more like my father than when I had hair. I always thought I looked more like him than my mother. It was OK with me that she said that. When I got out of the hospital and needed to learn how to walk again, Joe said that when I was shuffling my feet I looked like my father. My mother used to say, "Al, pick your feet up." That morphed into Joe saying "Mom, pick your feet up." I don't know why it was so hard for me to do it. Maybe because my legs had been swollen due to the kidney failure (like tree trunks or elephant legs, I couldn't decide which) and they had lost their muscle from all the time in bed. The ankle weights to wear while walking around the house helped. When running these days, I still feel like I don't pick my feet up high enough. If I try to change it, though, it messes up with my stride. My stride is my stride, I guess. 

Regarding masks, we wore them when going on the bike trail from Holyoke to Easthampton the other day. It wasn't too crowded, so at first I felt OK about it. But only about half the people were wearing masks. In hindsight I don't feel good about it, so I'm not going to do it again. Running around South Hadley feels safer. There aren't as many people. Though this morning I wore a mask when walking the dog and noticed more people out than I have seen later in the day. None of them were wearing masks. I felt like I had to dodge them. 

Many people are understandably having bad dreams. I actually had a good one. Most of my dreams about running or tennis are anxiety dreams. In the dreams, I'm about to run a race and realize I have forgotten to put on sneakers. I get lost and lose the route. (This actually happened once, in Holyoke, at the Talking Turkey.) I'm late to a tennis match, or I'm going to the wrong club and when I get to the right club, I'm too late and they've already replaced me.

In a recent good dream about yoga, my inner teacher was telling my inner critic to lighten up. (Not sure how that works.) To back up, I don't have a good relationship with chair pose. I feel like I get it right but when I try to integrate my arms it goes all wrong. In the dream, I was in a yoga class (real life, not Zoom) and we were all in chair pose. The teacher said my chair pose was good.

Here's something I wrote about the benefits of actual chair yoga, and here's something I wrote about the benefits of having a dog.

On May Day, I joined in my first rally and caravan for nurses and other front line responders. I had the idea for my sign, and Katie made it for me. We went past the Amazon fulfillment center in Holyoke and past Providence Behavioral Health Hospital, to protest plans to discontinue inpatient mental health services. To say the least, this is the worst time do such a thing.

The caravans happen every Friday. I plan on joining in again. 

A little bit of PTSD can go a long way

Illustration from Skincancer.net

I'm trying not to duplicate what I write in the blog and what I write for the skin cancer and blood cancer platforms of Health Union. So, I probably didn't share on the blog how I had cryosurgery that made me cry.  If you go to the link you can read all about it. Or not.

I got the biggest blisters on my hands and on the top of my nose. Good thing it wasn't date night. I knew I shouldn't have done it but I popped a few of them. They were ballooning and just asking for it. I left one alone. Guess what? The one that I left alone healed faster. I also wrote one about the problem of skin picking.

The other night I had a nightmare that conjoined some of my trauma and anxiety. Also I realized that something from the news had seeped in.

I dreamt that I was in a bed in a hospital room where relatives were sitting. My doctor said he was going to stick a needle in me and do a major procedure. I would go under. If I came out on the other side, I would be healed. But I might not make it through the night. He said someone should stay with me all night. But then my bed was in the hall and I didn't know where people would sit. Analysis: Stem cell transplant, coma, touch-and-go night when they really weren't sure I would make it. And the thing about the bed in the hall: those melodramatic ads against Question 1, the nurse-patient limits, which featured patients perishing in the hall because nurses had been pulled off to meet requirements in other places. (It failed.)

In another part of the night, I dreamt I forgot my tennis racquet and had to play with something that had a little handle and a brush at the end. I tried to do it but then realized I couldn't possibly hold onto it. The scene cut to a match. My opponent was bouncing around. She looked pretty good. I said I realized I couldn't play with the racquet. Then I realized mine was in the car. She said to go ahead and get it. I said but then I would be late to the match and she said it was OK, we could start and one-all, and she wasn't good for more than one set anyway.

I ran out to get my racquet but then realized my keys were locked in a room. Then I couldn't remember exactly where the room was. Oy.

I was still in transit when I woke up. I guess the good news was that my opponent was being nice about it.

I also wrote a piece about PTSD but it hasn't been published yet. When I did a little research, I found a story that stated many cancer survivors suffer from PTSD.

The National Cancer Institute calls it Post Traumatic Stress, or PTS. Apparently it is not as severe but it can rear its head at any time. Such as in nightmares that go back to the time of crisis.

After that nightmare I woke up feeling blue. I don't know why the saying is "feeling blue." Blue is one of my favorite colors. It should be "feeling gray."

In any case there was nothing much to do about it except to go on with my day.

Please don't say you're a blast from the past

Certain words, or things, although benign in and of themselves, assume a second – and negative – meaning when associated with cancer.

For example, relapse, which is obvious. But also blast, which is not so clear.

This came to mind yesterday when I was thinking of how I had relapsed in my good intentions to do strength training. Even saying it to myself caused a shudder. Because, of course, relapse is what happened to me twice.

But what about blast?

"A blast from the past," a college friend wrote to me.

"I had a blast," people say.

Well, for me, blasts are what I do not want to see in my blood test results. Because blasts are the immature white blood cells in the bone marrow that spill out into the bloodstream of patients with leukemia, preventing the formation of normal blood cells.

When I look at my blood test results, I always want to see a zero after the word blasts. I don't remember what it was upon diagnosis, but it was high. Thankfully it has stayed at zero since that day that my donor, Denise, saved me : January 31, 2009.

For a while after that when the word "pending" came up on the printout after the word blasts, I waited on edge until all the results came in. Now I am more relaxed, but I am sure if you took my blood pressure while I was waiting for my results, it would be at least slightly elevated.

Then there is chicken pot pie. In a way you'd think I'd be grateful for it because it was a staple during my hospital stays when so many other things were unappetizing or just plain too hard to swallow. But I ate so much of it that I would be happy to never eat a chicken pot pie again. Actually the smell or sight of one can even make me queasy.

And another: Diane gave me a soft long-sleeved blue shirt from the Gap for wearing in the hospital during one of my stays. Afterwards, I wore it at home. I can remember wearing it on the night I went to the emergency room upon my relapse in December, 2008. It's nice and I don't want to give it away and sometimes when it's cold I like to wear it, but still.

Also, a thought I do not really like to entertain: What if I need to go in again and I have given away all of my hospital clothes?

These things are not intense like the sound of a gun shot would be for a war veteran suffering from full-blown PTSD. I can deal. It is fine. But associations are always around, reminding me that although thankfully it is gone, it never totally goes away.

On the road, toting toys

The day before yesterday my doctor said they were going to give me a shot of Neupogen to boost my white count because it had fallen a little, from the 4's into the high 3's. He said it was due to medication and not to worry, but just to make sure everything was fine, they were doing a repeat chimerism to confirm the percentage of donor to me. I haven't heard the results yet.

Quick flash of PTSD. What if something's wrong? Low white count has signaled trouble in the past. But this is now. I know the drill: Recognize the fear and let it go. The thought leaves a cloud, but a cloud won't kill you. My white count went back up the next day.

I have several new toys to get stronger and make life easier. Yesterday physical therapy brought a cane. Who knew I'd be happy to get a cane? It makes me steadier when I walk and especially when I do the stairs. The occupational therapist, whom I welcomed after she stopped quizzing me, brought me hand-strengtheners: a squeezing thingie that looks like a cheese grater, and a tub of green "thera-putty" to mush around in various exercises. Makes me think of the old days when we copied cartoons with silly putty. She also pointed out that my walking would improve if I stretched more (I'm very stiff), so I've been doing runner's stretches, leg extensions in the bed and making attempts to touch my toes. We also talked about yoga breathing, which is always helpful.

Two of my nurses from 6A, Myra and Pam, just came down to wish me well. Myra, giver-of-pep talks, gave me one again, joined by Pam: Don't dwell on the dark days, enjoy the present, don't waste time worrying, think of good things ahead. I mentioned that I was concerned that my platelets were taking so long, and Myra said she's had patients get platelet transfusions for a year. They both gave me hugs, said they missed me and asked me to keep in touch. I thanked them for saving my life and for generally taking such good care of me, emotionally and physically.

Buried lead: Tomorrow I get discharged. I'm going to stay at Diane's in nearby Newton for a while because I will need to come to the clinic every other day to have my tank filled. A physical therapist, home health aide and visiting nurse will come to the house.