Sunday, April 4, 2021

2nd seder on Zoom and a sort of 10K

 


I ran a 10K!

No I didn't, but I looked at my mileage and it was 6.2 miles with a combination of dog walking, walking with a friend, and a few miles of jogging. 

I was so excited after the second dose of the vaccine that I went for a run. I felt better the first couple of days after and then on the third felt a little off...Just that feeling that you are fighting the flu. Hopefully it's a good sign.

The other day I went jogging before the rain and ended up being passed by a young guy who was really kicking up his heels. He sped by me. Harumph, I thought. Then I thought, wait, he's a small fraction of my age and most likely hasn't had four stem cell transplants.  And then also I don't think I ever had such good form. 

Once I got home, the good old negative self-talk kicked in again. I know that a loop that I like, up the Park Street hill with the Mount Holyoke lake on the left and back down on Morgan Street and going a little past my house on the way back, is about three miles. I got back and checked my phone (no Apple watch for me) and saw 2.9 miles. WHAT? I thought it was three...Well I walked around the house for a minute and then it was three. 

This is now and that was then...three miles isn't that bad and also better on my knee.

Nell at the Zoom seder

Last year, after our Zoom seder, we wondered if the next year Passover would be in person. 

Well, it wasn't. Thanks to Diane and David, though, we saw a lot of people, since their second Zoom seder had some 50 participants. The benefit is that you can have people in different time zones in the same place. The downside is that you can feel forlorn when "the meal is served" and everyone has disappeared. Last year, we got it together to all make dinner and eat together in our family Google Meet. This year for some reason none of us did. I got a chicken but didn't make it until later in the week. Boyfriend and I had leftovers by candlelight, and while he was heating things up I talked to Katie via FaceTime, since she shared my forlorn-ness. 

Six of us with expertise in illness and recovery read a little something about what we had learned. I don't know why I was nervous about doing it; it was all friends and family. I get nervous though in even this little bit of public speaking. I could have declined when David asked me to do it, but I figured that if I could face leukemia multiple times, I could do a little reading. 

Here's how I began it, with apologies to Joe and Diane:

I know a thing or two about how to not get out of a lockdown gracefully. For example, you don’t overestimate what you can do and you don’t get so flush with freedom that you go running and neglect to look where you’re going and trip over a root and crack your head. Then two weeks later you don’t forget that you are a little weak and get on a bike and fall off and crack your head again and get another concussion and stitches in the same eye that is still black and blue from the last time. 

It’s hard to avoid the temptation to rush back to normalcy but my most successful results came from being more deliberate and focused

But I have to say that now that I am two weeks post my second vaccine, I want to plan more than one thing. I haven't done it yet. I got a ride in a friend's car, and that was the most exciting thing so far. It's going to take time to inch back into normal life. 

Tuesday, March 16, 2021

2nd shot in the arm and something growing on my nose

Wintry day at Ashley Reservoir

I got my second shot today, yay! And on the same day, I found out that our beloved Shakespeare in the Park is going to happen again this summer. So, things are definitely looking up.

I have a new doctor whom I have only met once. Here is something I wrote about getting a new doctor. These changes make me think of my sweet friend Kelly and how devastated she was when her therapist left the area. Of course there was so much more to what caused her to take her life. But it is the last thing I remember her talking about. Sorry there is no transition to this next thing...

Medically, I mostly live in dermatology now. There is something on my nose, and it is making me cross-eyed. And no I did not tell a lie. 

It goes like this. Dermatologist #1 biopsied it and said it was another squamous cell cancer and sent me to Mohs surgery. There, dermatologist #2 said it was not bad enough to do surgery on and said to apply the chemo cream combination. It almost went away, but not all the way. Dermatologist #3 said it should have been removed, because it is growing, and said I should go back to Mohs. YES I have that many dermatologists. Don't ask. Maybe some other time. 

I sent a photo to dermatologist #2 at the Mohs surgery center. The person who took my info said she would get back to me. She got back to me and said to come in on April 21st. I said THE THING IS GROWING on my nose. She excused herself for a moment (I'm thinking of a car salesman coming back with a better deal) and said to come in on March 31st. She said the doctor probably wouldn't do Mohs but would get it off of my nose somehow. (Presumably a better way than having me pick it off.)

Dermatologist #3, who is really my first and number one dermatologist, said that was OK.

But I nicked it with a washcloth and now it is a little bit detached. I thought of calling to see if they have any cancellations before that, or, alternately, asking dermatologist #1, who biopsied it and who is easier to get an appointment with, if she could see me before.

They are all in Boston. Last night I dreamt that I called the Mohs office early in the morning and was surprised to hear the doctor herself answer the phone. She sounded sleepy. I said I was sorry. She didn't seem to mind. She gave me the phone number of a different doctor to call. I said I didn't recognize the number and asked if it was local. She didn't tell me. I couldn't read it that well. I tried to dial and had trouble with the phone. At first it was a rotary phone. Then it was a cell phone that I couldn't operate. 

The old "can't dial the number frustration dream."

Well in any case, as I said, I still think things are looking up.

We took a nice walk around Ashley Reservoir. It was good to get out of the neighborhood, even if only to the next town over. I didn't even have much PTSD about the time I got lost when running my last Turkey Trot. 

In a couple of more weeks, I should be good to go somewhere else. Maybe even into Ben and Meg's house to have real hugs with those cute little grandkids. 

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 day...yoga, 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.