Monday, September 12, 2022

Here, there, and everywhere

With Katie at the Delacorte Theater

 I was half worried about my black-and-blue marks (low platelets?) and half realizing that they were due to 1) being a magnet for wayward tennis balls and a klutz who hits herself with her own racquet, and 2) being of a certain age at which you bruise more easily, and 3) having skin so thin and sensitive that just brushing up against something can cause a colorful bruise. Can you have platelet PTSD? It was a problem for such a long time (in the ER: "she has THREE platelets! ") when I thought I might bleed to death, that it is easy to see how I could be triggered.

But all was well at my most recent appointment, when I was still crying on an off about the dog. I wasn't sure I would make it on time because I had to pull over to cry, and then I got in Boston traffic. I texted Melissa to say I would be late, and she passed the message to Dr. Ho.  When I finally got there, my blood pressure was super high. Then, while I was waiting in the room, magic happened. From out in the hallway, I heard a laugh so infectious (in a positive way) that it should be recorded and replayed for patients wanting a lift. It was my first doctor, Dan DeAngelo. He came to the doorway. We checked in about our kids. I could feel my blood pressure dropping. Then, more magic. Dr. Ho had a resident (or Fellow?) with him and spent so much time with me that I asked if he needed to leave. We talked about what happened with Maddie. He wanted to see photos, and he told me what a good long life I gave her. And no, he didn't need to leave. "We are having a healing session." Great to have a doctor who is interested in healing the whole person.

I have been here, there, and everywhere.

Donna and I went into the US Open
from a different entrance

Back to Shakespeare in the Park with with Katie (fabulous musical version of "As You Like It"),  Indigo Girls in Northampton, US Open tennis in Queens (on the bus again with Donna and other fans), home for a day, then back to NYC on Sunday for a matinee of the wonderful "Into the Woods," and back home the next day, with a stop in Fairfield. 

It was great to be back on the bus and have the traditional brownies on the way back. (When George asked what made my volleys so great at the next clinic, I said it was that it was eating both my brownie and Donna's.) The two of us have a real system now, as compared to the first year when we were clueless. We saw a little bit of everything...men's and women's singles, doubles, and practice sessions from prized seats. 






I started driving into NYC in "high pandemic" because I didn't want to get on a train. Some people don't understand why I keep doing it, but I have a system that works, with strategically  placed coffee/bathroom breaks and a spot reserved in a garage so as to pay a reduced fee. I used to pride myself on finding parking, but with all the restaurants out on the sidewalk, it is too hard to do. Now a reserve a spot in a garage. This at least saves some money as compared to driving in and paying the same day.

The house is so quiet without the dog. I still look around for her think to give her a leftover or pet her when she comes into the living room looking for me while I'm doing yoga. But it is getting better. 

Friday, August 19, 2022

Dogs and dog Heaven and a quiet house


Young Maddie at Tailgate

The day that my beloved dog Simon died, my friend Pam, who had gotten Simon with me at a pound near Vassar, was visiting, so it was a bookend. He took his last breath in the back seat of my car after a visit to Dr. Ruder, as in, couldn’t have been ruder, when we took him there after his legs went out from under him in the yard. He was about as old as my big dogs got (11 or 12, until Maddie came along). We had tickets for Tanglewood that night, so we went ahead and went. I sat on the lawn and cried. The next day, still crying, I picked up the phone to hear my mother crying. My Uncle Warren had shot himself. My cousins came. We went to Brattleboro for lunch before a ceremony at the top of a mountain. Then we came back to the house and ate. And I cried some more, for my dog and for my uncle. At some point during those few days, I remember furiously dead-heading snap dragons on my front yard. 


Winnie, the big black Lab, had become as much Jim and Jane’s dog as mine, and they took her when it was time. Misty just fell asleep on the rug near the front door and never woke up. I believe my “baby brother” Sam died at the dog sitter’s. The story goes that at a family gathering, my mother was crying her head off, because he had been her special friend. “What’s wrong?” someone asked. “Sam Gordon died!” someone else said. “Who’s Sam Gordon?” 


“The dog!”


Starting when Maddie turned around 14 or so, she had really slowed down. When I walked her across the street to get to the lake, I was worried that we might get run over. Some people didn’t have the patience for it. (Me to that person: “Then don’t walk the dog with me. I need to do it.”) But the dog people got it. It was worth it to get her to the lake. The years melted off. She was so happy sniffing around. If it was too hot, I walked her after the sun went down. She liked to sit in the ground cover near the door when I watered the plants. She loved walking to the lake with her friends Sue Ellen and Mary Margaret. She liked going “downtown” with her new friend, Rusty. I can’t say that the last year or so wasn’t stressful for me. Coming downstairs to check if she was breathing. The UTIs and in the last month, pneumonia. The dog meds were incredibly expensive, as were the fees for the tests. As I shed pills, she accumulated them.


Favorite toy

She didn’t always greet me at the door like she had done her whole life. But mostly she did. She dissed all her toys except for the long skinny snowman. I sent photos to the kids of her snuggling with it, hooking her paw over it. For some reason, when she turned 14, she started barking. I wrote a story for un upcoming issue of AKC’s Family Dog Magazine about how, with the help of a trainer, I got her to stop.


She was a “difficult child.” I remember writing a blog post, “Does anybody want a dog?” I complained at yoga. Erin, the teacher, said, “You love that dog.” Of course I grew to love her. She helped me recover from cancer. We helped her recover when she was hit by a car, a story that I wrote about for AKC's Family Dog Magazine, which won an award for inspirational feature. 

She wouldn’t stop getting up on the couch, so I put a special blanket in her spot in the corner. Then when she stopped jumping up on the couch, I wished she would do it again. When she couldn’t go upstairs anymore, I got her an extra downstairs bed. First thing in the morning when I came downstairs, I got down on the floor and gave her a body hug. She put her paw over my arm. 


In the past year, as I was weaning off some of my meds, she was adding on. I asked at the vet what happens with a dog like this, and she said that one day, they aren’t able to get up. 


It didn’t happen that way. First, the possible ways that I jinxed it. (Take this with a “grain of salt.”) I hadn’t wanted to put her through going to the groomer, so I hadn’t done it for a while, but her coat had gotten so full of dander that I took her. I kept buying small bags of dog bones because I figured she couldn’t possibly live long enough to go through a big bag. Then I figured that this was silly and got her a big bag. 


She had gone to her home-away-from-home at Jim and Jane’s when we went to Wellfleet for another fun family vacation at Diane and David’s. On Sunday, the day of my return, Jane called and texted to say come back as soon as possible, Maddie was sick. She thought it was another UTI. The next day when I took Maddie to the vet, there was some confusion. The vet who saw her said it was a UTI and to stop her pneumonia meds. The vet who prescribed said meds said it was not a UTI and don’t stop the meds. An ultrasound found something strange, a possible “foreign object” stuck in her digestive tract. They tried to fill her with fluids to flush it out, and when this was not successful, they said to take her to what they call VESH, aka the emergency vet in Deerfield, aka Veterinary Emergency & Specialty Hospital, where they had saved her when she was hit by a car as a puppy. She stayed the night.


Will you get this off of me?

The next day, a surgeon called me to say that she would need surgery to get “it” out. She was so full of gas that they could not see what “it” was, by the way. I had half an hour to decide. I cried. I wasn’t ready to go up to Deerfield to put her down. Maybe I should have, because she was already past her life expectancy. It would cost $5,000, on top of the approximately $3,000 in tests over the past several days. I didn’t even have time to consult with my vet. She was 15.5 years old. Was I really going to put her through surgery? The vet said that after a couple of weeks of recovery, she could be back to where she was. I talked to the kids. They said they knew me well enough to know that I would second guess if I didn’t do it.


They did the surgery. It wasn’t what they thought. In non-medical terms, her colon was messed up. The next morning when I talked to the doctor, he said her colon had twisted, then untwisted, and he had done a resection. The recovery would now be more complicated. More dire though, something bad had caused it. Probably something like cancer. She would need more tests. She was having trouble standing up. If I took her home, she would have at least four weeks of diarrhea. Just as my first thought the day before was that I couldn’t put her down, my thought that day was that I would have to. Jeff came with me

They brought her into a room where we waited. She looked OK. I told her all the friends she would see in Heaven. "You'll see Sam, and Simon, and Winnie, and Misty," I said through the tears. I realized as I write this that I didn't say she would see Charlie, the Golden who attacked me. I guess I can be forgiven.

For the past year or so, when I looked at her lying in a patch of sunlight on the rug, it was like watching Sam on the blue living room rug, in his spot near the window. Was Sam still breathing? Was she? It seemed both like she could die any day and that she would never die. I didn’t put it on Facebook, but by writing on NextDoor that I was looking for ideas on what to do with her beds, it had almost the same effect. (Someone told me, correctly, that I could take them to Dakin, the Humane Society animal shelter in Springfield. I have packed them up and that’s what I’m going to do.) People have been so kind, sending me flowers and cards and feeding me cake. It is so strange to come home to a quiet house. I cried so much that I had to gasp for air. It stops and starts and stops again. She kept me company after the kids left. We have been alone together for a long time. I still think, when the sun starts to go down, that it is time to walk her. 


I found a pet loss support group through the Dakin website. The meeting was helpful. I am keeping busy though not sleeping as well as I usually do. Something about losing a dog makes me want to pull out weeds, or deadhead like I did with Simon. At tennis, George asked why I was playing so well. I said that maybe all the toxins had come out with the crying. Some people say to get another dog right away, some say not to get a “rebound dog,” and some say not to get one at all. I’m pretty sure that I will get a dog, though not right away. For some reason, it feels disloyal to do it too soon. 


Michael Gordon photo/Family Dog Magazine story


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.