Coming soon: Steroid injections in my cuticles

If you know me at all, you know I like to do things differently. There were the three Caesareans and the four stem cell transplants, the coma followed by the "your mom might not make it through the night" event, the three-plus months in the hospital, incidental discovery of kidney lesion, and the graft vs. host disease of the skin, requiring a couple of years of my blood getting taken out, zapped with radiation and put back in, a.k.a. extracorporeal photopheresis for graft vs. host of the skin, or ECP, the fall on my head when I was running around the lake and the fall on my head two weeks later when I fell off my bike...

Well, those are just some of the things...

The ECP wasn't that unusual though unusual to me when I first heard that I needed it to fix parts of my skin that were hardening and getting lumpy and bumpy. I had weaned to every three weeks after starting by doing it every two weeks at the Kraft Family Blood Donor Center at Dana-Farber/Brigham and Women's. Maybe I did it for two years. I have to admit I lost track. I was going to keep cutting back but had to stop abruptly when the pandemic started. My skin stayed OK though, even though I went off prednisone after being on it for 12 years, as I described in this post. 

I was on such a small amount, 1 milligram, that going off it does not seem to be a cause of a new crazy thing: MY FINGERNAILS ARE FALLING OFF!

Just had to put that in caps...

OK, so, it's just one fingernail that fell off. OK, so I helped it off. It turned white, a sign, my fingernail specialist dermatologist said, that the nail had died. It was loose like a baby tooth, and I wiggled it off. Katie gave me a princess bandage so I could cover it up.

Half of my fingernails are OK, But the others are discolored and ridged. 

A fingernail biopsy showed that I have GVHD of the fingernail, or more precisely, fingernails. Yes that is a thing. 

At the end of this month, I have an appointment in Worcester with a dermatologist who specializes in diseases of the nail. She is going to give me steroid injections in my cuticles. On the bright side, she is lovely, as I explained here. 

Enough of that for now at least.

I am not sure if I mentioned that I got the fourth shot that immune compromised people could get.  That became my booster, and the first three became me original series, or something like that. Same as when I got my 1st booster a little early, I didn't have to do anything other than answer yes, when I signed up, to the question of was immunocompromised. Moving off the health topics...

It has been nice to have some people over for coffee with the COVID situation easing. 

One of the friends brought me cheerful flowers that have been cheering me up.

My skin is a mess and my dog was sick all over the place but I made it to another re-birthday

 

This is before the anesthesia wore off

Maddie and I have both had a hard few weeks. I had a biopsy on my thumb, making it hard to write, but it quickly healed and turned out to be a tiny squamous cell carcinoma that could be treated with the chemo cream combination that I use. Harder still was the next week's biopsy on a fingernail on my left hand. My fingernails have turned a gross combination of purple and white, and ridged) white where the nail has died) and the nail specialist in Worcester doesn't know what to make of it. The biopsy itself didn't hurt but it really kills now. A friend said that makes sense because the finger is the part of the body most sensitive to pain.

The results of the fingernail biopsy were...drumroll...inconclusive. Either a flare of graft vs. host disease, which might make sense because I finally got off prednisone, or something called lichen planus. I have an appointment on Wednesday with the fingernail dermatologist and one the next day in Boston with my regular dermatologist. So we shall see. 

I really thought Maddie was in her final days. She stopped eating for three whole days. She also had diarrhea and was vomiting. I took her to the vet. The vet did (very expensive) bloodwork and nothing turned up. I couldn't get a stool sample. I tried everything to get her to eat, and she wouldn't even eat a tiny dog treat. The vet gave her a probiotic, antibiotic, and prescription canned dog food. She is almost 15, and I thought I should tell the appropriate people it was time to say goodbye. I shed some tears.

Give me more food! 

Yet she didn't seem sick. She was drinking and walking. I called the vet to bring her in again and the person on the phone said to try something I hadn't thought of : microwave the food so that the yummy smell might interest her. I microwaved it and put it on my mother's china and put it under nose. And she ate! Now she doesn't want to stop eating. That canned stuff is like doggy cocaine. I am trying to ease in some bland dry food but I don't think I will totally stop the canned food. It has really perked her up. Previously we were able to make it down to the lake (slowly); when she got there, she perked up because there is so much to smell. Now she is even more lively on our walks, especially with Deborah and her two Labs. Her coat even looks better.

A few years ago, someone at a party (in the Before Times) told me with a dog that old, I was living on borrowed time. It was unnecessary... I knew how old she was then and I know how old she is now. But still...

BURIED LEDE:

Today is my 13th re-birthday. It is hard to believe for sure. Thirteen is a lucky number for me. Ben was born on the 13th (of September). I am grateful for Denise, my donor, first and foremost. And for Dana-Farber and the whole rest of the crew who put up with me and helped me get to this point.

 Some people will know that this all started in 2003 with my acute myeloid leukemia diagnosis and spanned two relapses and three transplants before the last one. (Note : Here's why I don't call it a journey though I still don't have an appropriate name for it.)

On Jan. 31st, 2009, I described what I called the momentous occasion and concluded: "Diane brought me a birthday present yesterday: a card with a pop-up bouquet and a bag filled with the other kind of product that I now need after my transplant. It contained shampoo, conditioner, lotion, body wash and lip gloss, all in pretty perk-me-up colors. (After transplant, you’re supposed to start with everything clean and new and throw out old products.) On the card, she wrote, “Here’s to a wonderful and healthy life with your new mystery donor!”

Birthday treat today!

Last night, as the evening weirdness settled in on me, Diane reminded me, “You’re getting another shot at a whole new life. It’s great. It’s the miracle of modern science.”

It’s wonderful to have a baby sister who anticipates my every need, who picks me up and who washes, folds and delivers my laundry with a smile.

Thank you everyone for your support – your thoughts, prayers, comments, good vibes, messages, calls, visits and cards really mean a lot to me. "

Ditto on the thanks!

Thoughts on the New Year

I almost forgot how to start a new post. At the Canoe Club on a beautiful day back in the summer, Donna said don’t stop the blog. I have to do what she says, as in “yours” in tennis, but I am only kidding about that and am giving it a try. 

Funny how things work out. 

I started this way back when Delta got worse, school for Nell was going to start, and Ben understandably didn’t want to take a chance with Cape trip #2. Joe also couldn’t come. So although we missed them, Diane, David, Katie and I had a lovely weekend. We went on the boat, which we might not have done if the whole crew was there. 

 My nose continues to be a pain. I had a skin cancer removed from the top of my head, and while I was lying there, at the Mohs Surgery Center in Jamaica Plain, the doctor said it (my nose) could use some dermabrasion and went after it with a sand papery thing. Now I am dealing with THAT healing. To finish it off, I apparently need laser. At 7 a.m. in Boston. At least I can get a little something out of these things. I wrote about how hard it is to bandage your nose, like so: Nose bandaging not my speciality.

It's funny, not ha ha funny, just strange, that as a blood cancer survivor I deal mostly with skin cancer, which I write about here.

It was also hard to bandage a wound on my head, as you can imagine. Boyfriend rigged something up with gauze, tape, and three hair clips. Donna and I made it to the US Open. That seems like so long ago. There was no bus, so I drove. Highlight of the drive might have been the pit stop on a sloping bank alongside the river just before we hit the Whitestone Bridge. Only kidding, I think. We navigated the grounds like pros, unlike in our first year, and saw women’s doubles up close, as well as men’s singles and a short trip to our nosebleed seats in Ashe, all the while juggling our Honey Deuce cocktail in the souvenir glass with the winners on it.

I did the Hot Chocolate Run for Safe Passage with my friend Amy Willard. We chatted most of the way and didn't do it for time. It was great to be with a group of runners again. Since it was outside, I wasn't worried about the virus. We kept our masks on except for the photo. It is so fun and festive and for a great cause.

I waited so long to finish this that now we are dealing with Omicron. I won't go backwards on some things, such as playing tennis indoors, which I wouldn't do last year when unvaccinated. Though I have to say that after having no problems playing all summer on the clay, my feet and to some little extent my right knee, are speaking to me with all of this playing on hard courts in Enfield and (still outside the other day in the cold) on the hard courts at the Canoe Club. 

On New Year's Day it is hard to know what to make of things. Someone I know asked on Twitter how it was possible to be optimistic about the coming year, what with climate change, the virus, and the anti-vaxxers giving the plague new ways of spreading. I agree that it is hard and infuriating. It is hard not to get my blood pressure up, when they parade around with signs along the lines of "don't tell me what to do with my body" yet will turn around and tell a woman what to do with her body. Big sigh.

But as for the positive: This time last year, we didn't have the vaccine. I couldn't let anyone in my house, and even when walking outside with Katie, I had to be careful not to wander into her pathway, as I am wont to do. This time last year, the grandkids couldn't have visited as they did the other day. We wouldn't have been able to play with the toys that I held onto from when my kids were young. We couldn't have had lunch. We might still have been able to take the "nature walk" that we took over at the college, but then we wouldn't have been able to come in and have hot chocolate and cookies.

In the old days back at the paper (s), I might not have interviewed my friends, but my sister/friend Margaret fit so will into the theme of pandemic pivots, which I wrote about for PBS's Next Avenue, that I had to feature her. I was honored that she used the photo on her Christmas card. 

Maddie is almost 15.  I remember when our dog Sam was this old and would be sleeping in the pool of light beneath the living room window, on the blue carpet, and we would check to see if he was breathing. Now I check her that way. She has mostly stopped playing with her toys but she really likes this snowman that Jane gave her for Christmas. As always, she seems annoyed when I take her photo. 

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.