Saturday, April 9, 2022

More fun with fingernails, and why injections were not as bad as I feared


 I wouldn't want to say that a bone marrow biopsy can prepare you for anything, but when it comes to pain and discomfort, it's right up there. I tried to keep that in mind when I went to Worcester to get the steroid injections in my fingers a couple of weeks ago. I thought she was going to do it in my cuticles. Somehow that idea was more freaky to me than what the  dermatologist actually did – injections BELOW the cuticle, in the top joint of my finger.

I asked if this was a series, and if she was going to do it in every finger even though not all were involved, i.e. disintegrating. The answer was yes (a month apart) and yes (for now).

To recap, the problem seems to stem from graft vs. host disease of the fingernail.

She's the only dermatologist who has used a freezing spray. It works well. I had read somewhere that doctors use a nerve block first. She said that would be worse than the injection itself. So she sprayed a little on each finger. The injection in each finger was quick. Just one sharp sting in each. They were bleeding, so she bandaged each one. I decided my hands looked like Nadal's when he tapes his fingers. 

Someone had asked if I would have trouble driving, and the answer is no I didn't. I headed over to Margaret and Nick's for dinner. Always nice to integrate a visit with good friends, for good food and good company, into the medical appointments. Or with Diane and David for the same. 

Then the next day to a different dermatologist to look at some spots, with directions to do the usual, treat my hands for five days with a combination of chemo cream, Efudex, and Calcipotriol, which you can do for a shorter time (five days) than just the Efudex. I don't know why I find it so annoying. Well yes, I do. It's a process. One tube has a top that doesn't fit on well, and it oozes all over the place. Put on gloves. Hands sweat. Take them off (the gloves, not the hands) in the middle of the night, without realizing it, along the lines of the days when I slept in rollers and pulled them out in the middle of the night.

Another nail, well, actually half a nail, turned so thin it was like tissue paper. The tissue paper part came off. Well, I helped it off. I hope the steroid injections help the part that is growing in to grow in properly. 

I asked if anyone did this closer to where I live. She said that she and another specialist in Providence are the only ones who do it around here. I don't actually mind. Worcester isn't too far. 

I am more annoyed by the problem on my nose. I wrote about that one here.

But hey, these things are fixable, and a lot of things aren't. 

Saturday, March 19, 2022

Unexpected but predictable nightmares

Morning meds

 I was sure that after my first (very exciting) time back at the movies the other day , I would have nightmares about the difficult topics and tragedies shown in the Oscar-nominated Live Action Shorts, which I saw at the Amherst Cinema. In the Before Times, I enjoyed seeing all of these shorts (three of them, including animated and documentary), and plan to see the other two. I had asked friends who went to the movies if they felt safe, and they said yes, there was nobody there. Sure enough, it was an audience of five, all of whom had to show proof of vaccination and wear a mask. I hope the Amherst Cinema can stay in business. I made a donation according to my means...which is not a lot. 

But my self-conscious is so myopic. I had a nightmare about my pills and my disintegrating fingernails. Or maybe that's just the way the brain works.

I wrote about all the pills I take. The Valtrex is one big horse pill. Once time I choked on it and was alone and thought I was going to die. It was stuck in my throat, and I felt like I couldn't breathe. I live close to the fire station. I don't know what I was thinking, but I ran to the door and thought of running down the street to the fire station. Then suddenly it went down. Now that I have been off prednisone for a while, maybe I can stop it or cut down.

Interestingly (OK in journalism you don't use that word because your words are supposed to be interesting and you shouldn't point it out to the reader but it's my blog), I was just listening to Terry Gross interview a doctor, Dr. Jonathan Reisman, who wrote a book, "The Unseen Body." Each chapter is about a specific body part or body fluid from his perspective as a doctor. He was talking about what he called the "fairly stupid" design of the throat, like so: 

"Specifically, the throat has to take food, drink saliva, other things that we mean to swallow and make sure they go into the one tube, the esophagus, the food tube, which goes down to the stomach. The tube right next to the esophagus, literally millimeters away, is the windpipe, which goes down to the lungs. And every single time something passes through the throat, its most important job is to make sure that that - whatever it is besides air does not go down the windpipe... If you try to talk while swallowing just once or laugh with your mouth full, as we all know, sadly, you know, you can aspirate, choke and die just from one little slip up."

Well, I haven't choked on food, knock wood, but I am always choking on my water or whatever else I'm drinking. For someone who eats ridiculously slowly, I seem to INHALE my water rather quickly. In any case, I dreamt I was choking on a big pill as was the case in real life.

As for my fingernail nightmare, I dreamt that someone looked at the finger without the nail and said, "EEEEUU," or however you would spell the expression of someone saying something is gross.

Back to waking life, another nail is partially off. Someone asked how many are involved, and I counted six. The steroid injections in my cuticles are scheduled for Wednesday in Worcester. I can't exactly say I'm looking forward to it but I am looking forward to getting something done about it.

Friday, March 4, 2022

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.

Sunday, January 30, 2022

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!






Saturday, January 1, 2022

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. 









Saturday, August 7, 2021

I'm Still here!

 

Big kid, little kids, on Wellfleet trip

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. 

Ferry fun

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.


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.