Friday, February 26, 2021

Of crashes in the snow and crashes of the vaccine website


This photo makes me look better than I actually looked in motion. I went twice and was thinking that I might try it again because the third time could be the charm.

I have gotten SO timid going down the tiniest little incline. We went to the golf course across the street. I used to go zooming down the hill and into the woods. (Ouch, when I wrote zoom it hurt me because I am so tired of it but also grateful for it, especially the Y yoga and exercise classes.) Now, to get to the flat part, when we went down on the other side with a slighter incline, I landed on my bum both times. Boyfriend had to take his skis off to lift me up. After yesterday's snow it is so pretty out that I told my friend I might want to do it one more time.

She asked why I would do that.

I said because I'm stubborn I guess. But then I thought better of it and realized I should stick with what's going well. That would be running, but I have to find the balance of doing enough so that it makes me feel good and doing so much that I hurt me knees.

I needed something after last Thursday's fight with the Massachusetts COVID vaccine site. What a mess. It crashed almost immediately when it opened up to about 1 million people at the same time. 

I was looking forward to getting it from Dana-Farber, But they took it away from the hospitals to focus on bigger centers. At one point, people like me were at the top of this phase. Then the state moved those with two or more co-morbidities down to be with all of those 65 or older. It is too confusing to even explain. That was the group to which it opened up Thursday. 

One person tweeted: "Using the Massachusetts vaccination website is like feverishly clicking on Ticketmaster with millions of other people, except instead of trying to see Beyoncé you're trying to keep parents alive in a pandemic."

The Washington Post had an interesting and troubling story about the problems that medically vulnerable people are having in getting the vaccine. 

But wait, I buried the lede...

Just as I was giving up hope, Katie, who had been working on the vaccine effort with me, texted that she found me an appointment! Actually, her boyfriend found it for me. It was at The Eastfield Mall on Monday. It was at first hard to believe. I think the moral is that you need a millennial. I've heard other stories like this. 

In any case, the night before, it was hard to sleep. I felt like I was going on a big trip the next day. Actually, going anywhere is a big trip. It wasn't very far, but it was a big step. 

The date, 2/22, was memorable in my family. As Joe texted: "I know we didn’t exactly nail down the timeline but can say that 2/22/09 was the night we won our hockey championship and then went to see you, and doctors said they didn’t think you’d make it through the night. Not only did you make it, but here you are 12 years later going to experience another medical miracle!"

I got the Pfizer and am scheduled to go back for the second dose on March 16th. 

It just so happens that if nothing else, the blog is a good memory jogger for me. I found this post, I'm still here, from March 11, 2009, in which I had typed up some of Diane's group emails. Diane did a great job! 

She wrote this on 2/23: 

The good news first: her white count is good and there are positive signs that the transplant part of what has happened has gone well.

On the other hand, she continues to have multiple complications – infections, fevers, problems with blood pressure, kidney failure, and GI bleeding… some of which is under control or being treated through dialysis or medications, and some that is being tested further.

We (Ben, Joe, Katie, Jim, and me) had a long meeting with the oncologist today. I wanted her children in particular to hear directly from the doctor what we are dealing with and what the treatment plans are. There are many elements that are being addressed individually and collectively. We are taking each day as it comes while being fully aware that things can turn for the worse at any moment. The kids will come back tomorrow for a visit as well.

I’ll leave you with this - I was there quite late last night after having been called back to the hospital by the oncologist. As I sat in the reclining chair next to her dozing off and half watching her sleep, I visualized us asleep in our beds at 1200 Fifth Ave… happier times and in its own odd way, a sense of peacefulness."

No matter how crazy things are now, I can say for sure that they are indeed happier times.

Oh, here's my attempt at an "I got vaccinated" selfie. 

Friday, February 5, 2021

It was my re-birthday and I forgot all about it

Nobody can deny that many things have made it hard to concentrate and along with that, easy to forget.

Election, insurrection, inauguration, crazies in Congress, and of course, COVID. As a person with what one friend jokingly called "50 co-morbidities," I have been worried about the slow, and some say, ineffective, vaccine rollout in Massachusetts, the supposed pinnacle of healthcare in the country. Friends and relatives in the 65 and up group in other states have gotten their first shot, while in Massachusetts, Feb. 1 marked only the beginning of 75 and over. I have gotten on some waiting lists in the area, and Dana-Farber is going to vaccinate transplant patients. But it's unclear when it will happen. 

I was upset when the state for some reason moved those with two-plus co-morbidities down a rung. People ask, "Haven't you had that vaccine yet?" as they did when I was two weeks overdo with Ben. ("Haven't you had that baby yet?")

One of my doctors said we are 30th in the nation in terms of the rollout. Sheesh. 

On the other hand, I am well aware of vaccine inequities throughout the country, and throughout the world, with people in crowded living conditions not even knowing when they will have access to a vaccine, so I could, maybe, possibly, stop whining...

But wait, we have a new president! What a relief to see someone capable and sane in the office, from top to bottom. And press briefings with no insults! 

On inauguration day, I was nervous and excited, like I was anticipating a big party but afraid someone would crash it. In total, with running and walking, I did about nine miles. I don't usually admit it, but I think I overdid it with the five-miler in the morning. Stamina-wise, I could do it, and I got those endorphins that you don't get in a shorter run. But my knee started talking to me, sending some twingy signals. It is OK but I don't want to bust it. I need to save it for tennis season...and shorter runs.

Bernie in front of my house

And I got to be on the Bernie meme train. So much fun to have something to laugh about and be proud about instead of what could have been a day of tears. 

So wait, what did I forget?

I wrote this post about getting confused about my birthdays. I remembered my first birthday...and then forgot that Jan. 30th was my 12th re-birthday.

When Ben texted "Happy birthday," I had to think about it for a moment.

Then I checked my email and saw that Denise, my donor, had sent a happy re-birthday email.

Then I thought, wow, how strange to forget. I guess in a way it is good for it to not be such a focus. Frankly it is hard to remember which day or month it is. There aren't the same markers, such as tennis on certain days, then Starbucks or the Thirsty Mind, locally, and other places, for writing. It was much easier to finish something if I told myself I was going out to write somewhere and NOT coming back until I finished.

The Zoom yoga and fitness classes are some kind of marker, but they are all in the house, so it is not the same thing.

It just so happens that on Jan. 30th I had talked to both Diane and Margaret, who were both by my side through it all. We hadn't mentioned it, but maybe the universe invited me to call them.

On that day, it was freezing, and I had gone for a shorter run. I "instagrammed" a photo of me wearing the neck warmer that Joe gave me. 

Afterwards, when I remembered, I texted with Diane and Margaret about the transplant day and the events following the transplant, when I was hanging on for dear life. Feb. 14, "coma day," ... Feb. 22, the day Dr. Alyea called the troops and said I might not make it. 

It is good to remember, but not also so bad to forget.

Wednesday, January 13, 2021

Bad times in the country, better toe at home


I don't write about politics in this space but this is an exceptional time, as in, exceptionally bad, so I will just say:

1. When I was canvassing for Hillary Clinton and the other Democrats in New Hampshire before the 2016 election, I could not believe it when some people said they were voting for Clinton "as the lesser of two evils." We were more supposed to give them information than engage in conversation, but I just could not stop myself from explaining that they were off their rockers. No I didn't say it that way, I just calmly tried to explain the difference. Of course we didnt know exactly how bad it would be. For what it's worth, Clinton did get the state's four electoral votes, and Maggie Hassan, the governor running for Senate, won the seat . This is not to mention (which I just did) the guy who shouted at us from his doorstep that he was voting for Trump and we should get away from his house. It was a rainy day, and my feet and my brain got soaked. After I got dropped off in Northampton, I went and treated myself to a pair of boots that my soaked feet and waterlogged brain needed.

2. After that fateful election night, when I had spent the night at my friends' house for an election night "party," I had to pick Maddie up from my Trump-loving dog sitters (previous baby sitter). I said through tears, "Don't gloat." 

3. In talking to them during the campaign (with Fox News in the background at their house) we had a few words. (I actually love these people except for their politics, and they love my dog so much and take her whenever, I don't know what I would do without them.) They even took the dog when I went to N.H. 

The former babysitter said, "Hillary needs to be in jail" and "Obama ruined the country." When I tried to say otherwise, she said, "You people..." We never talked about it again. I wonder what they think now. I know they also watch "regular" news so they must get some dosage of the truth. 

If it was hard to concentrate before, it's even harder now.

The other day, though, I ran about five miles. It was good to air my brain out. The only way I can run without my glasses getting fogged up is to put contacts in. The contacts are supposed to be "multi-focals," meaning good for reading also. But they just don't work as well as when my eyes were younger and I used to wear them all day. I can't read that well with them so I just use them for running and longer walks. 

I had to wait about a week for the pain in my toe to subside. The biopsy report came back. I really like the young resident who did the work. He had someone call me while he was on vacation because he knew I was worried. The nurse said it was not squamous cell carcinoma or melanoma or anything to worry about. It is, or was, since it is gone, "just" a benign tumor. 

That is of course good except for there is a hole in my toenail. It is actually more like a missing slice. 

I put two Band Aids on it to run.

When I say something gross like this, re: the missing part of my toe, I can hear Alexis saying, Ew, David.

If you have Netflix and haven't watched Schitt's Creek, I'd say to go and do it since it offers as much of a balm as is possible in this time.

Monday, December 28, 2020

When I said 'nose,' maybe the dermatologist heard 'toes'

I went to Boston to the Mohs surgery center for what I thought would be removal of something on my nose. Instead, the doctor said to apply Efudex/calcipotriene, dermatology's "dynamic duo," to my face for five days, to in effect burn off this and other spots. Instead, she had the resident cut away part of my toenail and biopsy the dark area underneath it, "just to make sure it isn't melanoma." This was kind of as an aside. I have shown this gross big toe to many people who haven't had much to say about the dark area under it along one side. The consensus has been that it is scar tissue from my toe banging up against my shoe while running. She is the first person who seemed to give it a second thought.
When I said nose, maybe she heard toes...

The resident said not to worry. What, me worry? 
Here is something I wrote about being a worry wart.

It was not a pleasant experience and really hurt even more when the anesthesia wore off. I have not gotten the results yet. Boyfriend had to stand by when I took the Band Aid off in case I fell over in shock at the sight of it a partial toenail and hit my head.

A friend pointed out that it wasn't a good idea to write in October that my hypochondriac tendencies had led me to suspect pancreatic cancer...and then disappear.

I started a couple of times, as you can see if you scroll down to a post I wrote last month, and then I had blogger block, a version of writer's block that occurs when you are not sure why you are writing a blog. Also, I like to add photos, and my photos disappeared from my Mac. It took conversations with several Apple experts to get them back.

The pandemic has made it hard enough to concentrate on paid work. So I have put my energy into work that pays. I thought of revisiting the blog, however, when I wanted to look up one of the crazy things that happened to me and found it in my blog. It was the years that I had ferritin overload due to having so many blood transfusions, and having to drink a disgusting medicine, Exjade, to get the number to get down to normal. I found the blog, put in "ferritin," and voila, the posts came up. So maybe it is at least useful. Still, I got tired of hearing myself talk about myself. I'm not sure what I am going to do, but I thought I would at least check in and update.

Here is something about the increased mental health risks during the pandemic for those who have seasonal affective disorder, or SAD, and tips for coping. And here is another pandemic-related story, about the need for cancer treatments and screenings to continue. 

Here is what I started: 

Here we are with my Aunt Marge on her 100th birthday. I was very attached to her. My mother said that when I was three or so, and my head didn't reach the counter in a coffee shop, and my aunt hadn't gotten served, I said, as if out of nowhere, ""Please give my Aunt Marge  cup of coffee." 

When I moved to Western Mass for my job at the T-T (Transcript-Telegram), I stayed with her in Greenfield for a while. She was gracious, even when my dog Simon took a chomp at their little dog when he messed with Simon's food. Over the years when she lived in New York, I visited as much as I could. 

This photo  at left turned up during cleanup, in an envelope of old photos. Warren in front, my mother on the left, and Marge on the right...with the same sweet face.
As Bruce wrote in a beautiful tribute on Facebook, when Marge died on Oct. 19th, "she spent 101 years and 9 months on this planet and came in on a pandemic and left on a pandemic."
Bruce Byers photo, Lynne and Marge

Saying that I was sad when she died is an understatement. It is more than being the last link to the generation, to my mother. It is the love I felt for her. And not being able to go down to New York makes it worse. I have thought of doing it and would love to see Jeanne, Bruce, and Amanda, but it doesn't make sense now with the surge. 

The two of them were sooooo close. They called each other Bren. It came from an act that two sisters, Brenda and Cobina, did, which would start like this: "Brenda!" "What is it Cobina?" They apparently did this for a while and then when they forgot which one was which, they just simply called each other Bren.

Hopefully will all make it through and can get together in New York to celebrate a wonderful life. 

Here is another start. 

It sounds like an ordinary, tennis, Odyssey bookstore on Small Business Saturday, coffee with a friend, dog walk... and in a way though part of it would have seemed abnormal pre-pandemic, it is the version that I have gotten used to. It was virtual yoga on the living room floor, for starters. Tennis, still at the Canoe Club, wasn't any different than in the past except for knowing that it is nearing the end because I decided not to go inside. At The Odyssey, one-way traffic, hand sanitizer, and a placard to take so they can keep track of, and limit, the number of people inside. And coffee sipped behind the mask, reminding me of how I did it after all of my transplants .

Sunday, October 4, 2020

Wondering about weight loss and activities moving inside

There’s a fine line between being hypervigilant and hypochondriacal. For example, whenever it comes up, my friends say that being a hypochondriac helped me when I went to the doctor after that fateful slow 10K in 2003; they would have just written it off to a bad day. I say that I think that one was more in the hypervigilant category. I thought something was wrong, but in my mind it wasn’t a deadly disease, just bad diet or training. 

 As an aside, it has been interesting to see the doctor who diagnosed me, Ron Berger, out on the tennis court after his retirement. 

 Well in any case, on the hypochondriac side, I started to worry that my weight loss was a sign of something dire, even though I recently had a blood test that turned up some slightly off kidney function but nothing too serious. (Upon retest it got better and might have been due to dehydration or taking Ibuprofen, which is bad for kidneys, but I'm not supposed to take much Tylenol, either, because it's bad for liver, which leaves me with oxy, and I definitely don't want to take too much of that, but pain relief is another topic.)

I don’t as a rule get on the scale. I started to think about it when my dentist, who takes an interest in my overall health, said I was too thin, and I should go eat some steak. It’s kind of in my family to get thinner and thinner, though. For example, my father was so thin and unsteady that we were afraid he would fall over. 

 At my last appointment at Dana-Farber, I did weigh in at about 10 pounds less than the year before, but they said it was OK since it was over a year, and I’m very active. 

Well I finally got on the scale last week and was aghast at what I saw. I weighed less than when I finished cancer treatment. When a disease is in the news, that’s the one that sticks with me, so immediately thought I had pancreatic cancer. I don’t usually do this, but if I’m in a panic, I think it’s OK to text my wonderful nurse practitioner, Melissa Cochran. She gave me her number, so I think she doesn’t mind. She said she would call me.

 She did shortly after. Her response was not that I should rush right in. (Maybe I expect bad news because of all the times it happened, and this history gets layered on top of my tendency to worry.) She said I probably wasn’t getting the 2,000 calories a day that I should be getting. 

I downloaded My Fitness Pal and tracked what I ate for a day. Then I subtracted my activity, which was a lot, and saw that indeed, I was below that number. Another factor was removing most dairy, due to digestive issues. 

I bought some Ensure (chocolate flavor) and took it back. Then after some friends said I should try it, I got some more, drank a little, and said no thank you. I think maybe I’ll take a chance on the digestive issues and put some ice cream back in. Also the running I’ve been doing, although not pretty, undoubtedly burns a lot of calories. 

And then there is tennis most days… I’m enjoying it so much, I don’t want outside tennis to end. A lot of people are going to go inside, but I’m not sure what to do. It seems like it was just yesterday (actually end of May or early June) when we were worrying that it wasn’t safe to even play outside. We got through that and even attended a garden party last week at a tennis friend’s house. 

 Since I like to worry, in addition to worrying about indoor tennis (which a lot of people say I shouldn't do), I'm worried about how I'm going to see kids and grandkids when it gets too cold to be outside. They were already briefly in my house, so I'm thinking that maybe we can do it if we don't get too close to each other.

I have an appointment at Dana-Farber in a couple of weeks with my new doctor, so I think I'll get his opinion on these things instead of taking the "person on the street" approach.

Sunday, September 27, 2020

How to improve your tennis game: Buy a new skirt

 I wasn't sure I could watch the US Open without fans, and with knowing that Donna and I wouldn't be going this year. But I quickly got into watching the tennis and finding it interesting to see the players watching each other and wandering around doing all the other activities in the bubble.

At Holyoke Canoe Club

It was right about this time that the elastic in my tennis skirts gave way.  I kept jacking them up like an old man hitching up his pants. And the colorful skirts and tops that many of the women were wearing caught my eye. The design was like paint brush strokes. I put in the relevant keywords (Nike skirt US Open blue and pink) and the Nike US Open skirt came up. 

I thought it was just an interesting, colorful skirt, but then I read that the Nike look at the US Open was more than that. Marija Zivlak of Women’s Tennis Blog wrote,

"Nike is reviving Andre Agassi’s rebel style in the 2020 iteration of the ATP icon’s Challenge Court collection that stirred up the tennis fashion world thirty years ago. Using coquille board, torn paper and snippets of the original design, Nike re-created the legendary looks with more modern, functional fabrics.

"The bold collection includes tanks, cropped shirts, skirts, shorts and jackets, all in neon and surf/skate-like geometric patterns that bring back the vibes of Agassi’s groundbreaking on-court style."

When I looked up the skirt online, I saw that I could get it for a discount at Tennis Warehouse. But in keeping with the "shop small" theme that I already follow and that the Open promoted, I got it at the tennis store in Fairfield after another fabulous day at the beach. 

"Maybe it will improve my game," I said to the salesperson.

Well, actually, it did.

I had this thought about my game:

For all the years I've been playing, and all the lessons I've taken, maybe my game should be a little better. 

But for all the days I spent almost dying, maybe my game should be worse...or maybe I shouldn't have a game at all.

Therefore, I am probably right where I am supposed to be.

Also, I'm having fun and getting exercise. When I first came back (multiple times) and went to clinics, I could barely keep the ball in play. I remember feeling kinda bad that I was gumming it up for the other players and feeling embarrassed that I couldn't do what I wanted to do. Now I get asked to sub in groups and feel like a valued member of the tennis community. And in the four days that I played this week, my foot didn't hurt!

Just to make sure it stays that way, I went out to Shutesbury, to the foot fix-it guy Ken Holt, and got a new pair of orthotics. My last pair was three years old. I was using a pair that was even older that got mixed up with the three-year-old pair. Ken is not seeing people in his office; you drop off your old orthotics and he makes the new pair based on it. But I wanted to make sure he was working off the right pair, so I met him in his driveway (at a distance of course) and showed him both pairs. I couldn't tell, but he said it was easy to see which was the newer pair. 

With our democracy at stake, foot problems and tennis level ponderings seem very shallow, so, I'll just say that although I found door-knocking easier when we were in the real world, I am doing some phone banking. I wrote postcards to Florida voters to encourage them to vote by mail, but that part is over. And the price of the shirt to go with the skirt was too much so I didn't get it, though who knows, maybe my gae would go up another level if I matched. 

Sunday, September 6, 2020

Birthday and beach day good, foot pain bad

I had a great pre birthday, birthday and post birthday followed by a bad foot day. The bad day turned into more. 
Something re-activated the dreaded plantar fasciitis, making me a bore to anyone who hasn't suffered from it. One of my tennis buddies had it so badly that she had to skip tennis for a while and go to physical therapy. In between games on the court, she showed me some of her stretches. I feel like I know them all...I actually threw out my boot because I was done with it. The moral might be that even if you have a dumpster in your driveway, never throw anything out.

I have been going to the chiropractor and have contacted my orthotics guy, Ken Holt, because I wonder if it's just a matter of getting new orthotics.

A friend said he couldn't keep track of my birthdays, and I understood. One original birthday and four re-birthdays. 

It was great to have the three kids and one cute little boy at my house for the pre-birthday. We ate outside and were going to stay outside (because, COVID) but Callen wanted to go in. We thought of not doing it but all of a sudden we were all inside. We spaced out and that was a while ago already so I figure it was OK. I loved seeing him at my mother's piano next to one of her paintings.

On the real birthday, I played tennis and went out to eat with Boyfriend, for the first time. People said that 30Boltwood, in Amherst, does a good job, and they were right. 

A couple of days later, I got to go back to the Fairfield Beach Club, where I had great success in getting Callen's little shoes on him while Ben was busy with Nell. Callen had eaten a Spiderman pop and got more on himself than in his mouth. I suggested we go wash up. He took my hand and we headed off. That little hand in mine was worth the two-hour drive. I thought we were going to a certain bathroom but he led me to another room with a big sink in it. I picked him up and turned on the water, which he seemed to be trying to catch in his hands. 

This of course makes me think of doing the same thing with my little kids.

At the end of the day I enjoyed a swim in the calm Long Island Sound. I miss seeing the ocean at Cape Cod, but I think it was Katie who pointed out to me that since I'm not allowed in the ocean, this is a good fit for me. Ben pointed out that there were also no sharks.

If you don't care about feet, you can stop here.

 On top of that, my neuropathy, which has been pretty tame, has gone on and off crazy. The other night, I felt like my feet were electrified. I don't post too much in FB groups such as Our Neuropathy Friends, because everyone is going to have a different opinion. But if a lot of people have the same opinion, for example on a kind of CBD that is effective, I might be interested. That group is recognized by The Foundation for Peripheral Neuropathy, by the way, 

Hello! I haven't posted in a while because I've been doing OK, meaning, a low buzz in my feet but not that bad. 900 mgs of gabapentin twice a day, or an extra 300 if I want. I don't know what happened. Maybe it's the rain that is coming. My feet got totally electrified, on top of a return of plantar fasciitis. A while back I tried CBD, THC and a combination and was never that happy with the results so I stopped. I was just staring at some chocolate that is 1-1 and wondering if I should take a nibble but I didn't. CBD doesn't really do anything and THC makes me a little stoned, even if I take a little/ I guess it works to take your mind off the neuropathy but I've kind of been there done that with that feeling. As you all know it is very upsetting. I took 5 mgs of oxycodone before. Now it has worn off. Ibuprofen has a bad effect on my kidneys and Tylenol of course is bad for the liver. I put CBD cream on my feet and that helps a little. I guess my question is whether people have had good luck with CBD. The kind I have now is made by Good Body Products in Vermont, for what that's worth.

Mostly it was good to get a little support.

"People that dont deal with this problem have no idea of how debilitating and relentless it is," one said.

Mostly they are doing the same as I am, rubbing different things in their feet. One said he had it so bad that he had to stop work and apply for Social Security Disability.

Someone said capsaicin in a gel, but I put that on my toe once when I had problems and it burned my skin. 

But then after a string of bad foot days I had one of my best tennis days ever. So in conclusion it's hard to figure.