I'm Still here!

 

Big kid, little kids, on Wellfleet trip

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I didn't write for a long time because in the height of the pandemic, everything that I was going to say seemed so trite and trivial. As you can see, I did it for a while, and then it was all I could do to concentrate on my paid writing. I was used to doing it out of the house, inspired by the coffee shop noise that due to my newsroom years makes me concentrate better than I do at home. But I'm not complaining, because I was privileged to be able to stay at home. In any case, for the handful of people still checking in, I should say that I'm still alive! 

I realized also that for my personal reference, the blog is a good resource. For example, in thinking about possibly going to the US Open, I looked up what happened last year and found this post about the magical qualities of my Nike tennis skirt. It helped me remember what was going on at the time.

 Also it turned out that I am a resource for others. For example, in the spring, I got this message: "Hi Ronni! My name is Lane - I found your number off of your website. This is a little bit random, but I am trying to track down the bench books in Wellfleet. My friends and I came there 6 years ago and wrote some entries, and when returning a few years later hoping to read our messages, the book we had written in was gone. We are coming back this week for another reunion and are determined to find where they are stored. I found your blog post which noted that they are maintained by a local resident. I was wondering if you had any information on who it was? Thank you so much in advance for any info you might have! " They had googled bench book, which is at one of my favorite places in Wellfleet, overlooking Duck Harbor, and found an entry on my blog, maybe this one. 

One thing led to another, and it's kind of convoluted, but they did find the keeper of the book, with some info that I gave them as a starting point. He texted that they were students at Carnegie Mellon University, in Pittsburgh, and I replied that I had just interviewed a professor from the school, for this story on pandemic pivots, and he said they had taken a class with her. Hashtag small world.

I have been doing the usual: jogging, playing tennis, dealing with skin cancer, doing yoga, writing... The skin cancer is actually not an aside like I just wrote it. I had one on my nose, a squamous cell as usual. I didn't think it would turn into such a big deal, but I ended up with 12 stitches on my nose. It was so hard to keep it bandaged. I needed help. Then I went to Boston to get the stitches out because I figured they knew best. But they left one stitch in, so I had to go to the local doctor anyway to get the stitch out. 

I am also dealing with a senior dog (14.5 years old ) who didn't bark her whole life and who now seems to be getting it out of her system. My vet wants me to see a dog behaviorist . (Apparently you can teach an old dog new tricks.) I know what the problem is. She must have dementia because she wants to be with me but goes into another room and starts barking and seems to forget that all she has to do is stay in the same room. I gave in and made the appointment because who knows, I might get some tips. I have been putting her on a leash and going into the other room where she is, for example the dining room, and bringing her back into the kitchen with me. I try to stay calm, because I assume that if I raise my voice, she will think I'm barking at her. But I am only human, and if she is in the same room as me and starts barking, I do sometimes say STOP! More often, I go over and give her a pat or just look at her and wave hello.

I volunteered at a fabulous program, Moving on Up With Tennis and Education, which will be the topic of another post if I don't disappear again. 

It was so exciting to get some freedom and go to the Cape with the family and not worry about hugging. The little kids have the beach in Fairfield, but they seemed to be exhilarated by the waves at the ocean. There were enough waves for it to be exciting but not so many that it was hard for me to get in and out. (And no sharks.) So I went in also. I got on my back and floated like my mother used to do. I looked up at the blue sky with the white puffy clouds. I will admit that Katie had to help me out. We had a moment when I did a belly flop in the shallow water. "Don't yank on my arm!" I yelled, or something like that. We had a good laugh. I didn't drown. We walked on the beach to the other parking lot where the cars were. (Long parking story, maybe not that interesting.) It was almost a mile, but Nell and Callen did well. 

I thought it was a bit of an overreach when Ben said he wanted to take the day ferry to Nantucket, have lunch at The Rose and Crown (an old haunt) walk around a little, and go back. But I was wrong. It was great. We drove approximately an hour to Hyannis, took the ferry that was only an hour as compared to the longer car ferry that we used to take, enjoyed lunch and walked a little and then went back. I told the kids about throwing a penny in the water as we left, as a sign that we would be back. We did it, so of course we'll have to go back. 

With Joe and Nell

Cape trip #2 is supposed to happen in a couple of weeks. Diane and David were away for the first one, and we have all been looking forward to getting everyone together. The taste of freedom was so liberating. And all those hugs. Now we are starting to worry about the Delta variant. I am back to wearing a mask in stores. I am back to wondering, what counts as "immunocompromised?" (Those are among the ones who might have greater complications.) Is it me? I don't know. I am still on one milligram of prednisone, which compromises my immune system somewhat. And the transplants themselves compromised my system...somewhat. But 12 years from my last transplant, (I wrote about forgetting my birthday) , I am not immunocompromised like people undergoing treatment or right after it. I asked Melissa way back in the EPA (Early Pandemic Era.) She said my immune system is good but not perfect.  We are still planning on going. Fingers and toes crossed.

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. 

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. 

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. 

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.

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.