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.