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.

Dentist and dermatologists and a trip to Boston, oh my

Silverwood Terrace scenery

Well I made an appointment to go to the dentist. That is happening today. They said people are coming in. At the same time as getting my chipped tooth fixed, I might gather up the courage to say I lost my mouth guard. I must have thrown it in the wash with the sheets but I don't know what happened from there. Or maybe the gremlin took it.

But last week, instead of going to the dentist, I went to the dermatologist...in Boston.

This happened in the strangest way. There was a little dark, raised spot near my knee. To be honest, in a twisted effort to prove to myself that it wasn't melanoma, because it was darker than my squamous cell cancers, I picked at it. Yes, I know, that is weird and gross. I got left with a little scab that didn't go away. You can STOP here if you don't want any more details.

To continue, though, as I have said, I have three major dermatologists, and even more, if you count the ones I have seen when my regular ones aren't available. I showed it to the people at Mohs surgery back in the real world before the pandemic, and one of the doctors there said it just looked like a scab. Next, I had a Face Time appointment with one of my other dermatologists. She said that if I was coming in, she would biopsy it, but since nobody was going in for this kind of thing, we would just leave it alone. The Mohs people like to be in on the loop, and asked to see a photo. So I sent them a photo. They day that they got it – last Tuesday – I got a call from a nurse at the office. She said to come in the next day to get it biopsied. COME IN TO BOSTON? I asked. Yes, she said, come in at 3 p.m.

Naturally I was hesitant, as Boston is a hotspot. My friendly personal chauffeur was also not hot on the idea. He didn't want me to go. I do everything they tell me to do, so I was going to go, one way or another. It was out of the question to contact the crazy driver pool. I asked Katie. She said she would do it but that would undo all the work we have done in seeing each other at a social distance, because we're not in the same germ circle. Duh. I thought of driving myself, but I was going to get an excision, and a stitch, in my knee, so that wouldn't have been a good idea. My friendly driver took me.

The doctor was also going to do something about the non-healing spot on my thumb. So there would probably be two biopsies.

I made a phone call to a local dermatologist. I could come in but it would be a week before I could get an appointment. When things settle down I'm going to see if I can get a dermatologist at Cooley Dickinson, since it is in the same network, Partners, as Brigham and Women's.

Meanwhile, I sent a photo to my regular dermatologist and gave her the news that I was going in for a biopsy. She said it didn't look like anything serious. Still, my mind raced. I thought that someone telling me to go into Boston, on a day's notice, meant that they suspected something serious.

So the next day, off we went to Faulkner Hospital, in Jamaica Plain.

It was an easy drive, and quiet at the hospital. Someone came out from behind a partition and took my temperature via my forehead. Then another person passed me a mask on a long stick. I took off my mast and put on the new one. I was in the elevator with only one other person. The office was quiet, with nobody in the waiting room. The nurse said they were seeing about five people a day.

When Dr. Schmults came in and looked at the leg, she said it didn't look serious. She said some word that I can't remember, but after she biopsied it she said it looked either like a seborrheic keratosis or a mole that was traumatized. (Did she say a traumatized mole? I don't remember. Flash back to the picking...) She also took a nice little piece out of the knuckle on my thumb. When she came at me with the needle, I said the thumb was one of my least favorite places for anesthesia, due to the lack of fat. But I had forgotten how good she is at it. She does tiny little jabs instead of one big needle, so that after the first one you don't really feel it.

I haven't gotten the results.

Happy asparagus

The knee has one dissolving stitch in it, but the thumb doesn't have anything. It's hard to keep it dry, with all the hand washing. Yesterday it didn't look so good, so I put antibiotic ointment on it and kept making sure to put a dry bandage on it.

The knee didn't hurt at all afterwards. The thumb hurt a lot. I had to lay off typing for a day.

A couple of days later a went for a run. Maybe I shouldn't have done it, because it was too late in the day when I decided that I was up for it. It was hot, and I was dragging. Yesterday I decided that it was better to do a shorter distance well than to do a longer distance poorly.

The morning walks are nice. I go along the golf course and look at the trees in bloom. The golfers are out, making me wonder when tennis will come back. In tennis, there is concern about touching a ball that someone else has touched, and if the person has the virus without knowing it, then you getting it from the ball. Some people are saying to maybe just play singles. One friend said she heard that you mark your own balls and only touch those. It seems a little far fetched. A friend from the Canoe Club sent a funny video of different ways that people are playing tennis at home. We could hit a ball around in my driveway, but somehow the scenery there, with the dumpster and all, doesn't inspire me to want to do it.


I bought some plants from an outdoor sale on Route 47. My friend isn't happy about going around people, but I have to do some things, though nothing inside. I feel that outside is safe if people are wearing masks and it is not crowded. It fit all these criteria. On the way back, I passed several asparagus stands. I got a bunch from a wagon in front of a farmhouse. When I drove into the back to turn around, an old chocolate Lab named Bailey greeted me. A kid came out of the barn with two kittens in his arms. It felt normal to choose from some bunches of asparagus on the wagon and put my money in the box.

Little boosts.

Worried about virus, happy that my kitchen is coming along

Hey, I have my kitchen back... sort of, that is. 

The barrier separating the dining area from the kitchen came down today. It looks strange with no furniture in it! Also it echos. The walls are primed and ready for paint. Some people volunteered to help me (thanks Jen and Mimi) but when I went into the paint store, I gravitated to the color that I think I want, natural linen. I thought of going back to get some other samples but sometimes the first thing you choose is the one that you end up liking the most, and also, the virus. (As in, not spending too much time shopping, but I went to the Big Y to pick up a prescription today and ended up there for an hour because it was mobbed with people preparing for what they seem to think is the apocalypse. And no hand sanitizer...)

Lower down in my last post you can see what it looked like just a week ago. 

Today I have a story up about the uncertainty facing "older people" who are most at risk. It is featured on Next Avenue, the PBS-affiliated website for people 50 and older. The editor wanted it in two days, and I am pleased to say that I have not forgotten how to write on deadline, thanks to my training in the daily news biz. 

The story started like so: The other night I was so worried about the coronavirus that I took five milligrams of Ativan, but all it did was make me feel hung over. The next day, I ran four miles and walked another two. Neither helped.

“I shall die of eating an unwashed grape,” I said to my dog in my best Blanche DuBois impression.

I survived relapsed leukemia — with an apparent record of four stem cell transplants — and am worried that after all I’ve been through, COVID-19 will be the end of me. None of the available information has allayed my confusion and concern over who exactly is at the highest risk. You hear that the high-risk group is people over 60, then, people 70 and older. Or those with high blood pressure. I concluded that I was going to skip everything but tennis, but, after I went to tennis (where there were many people including the doctor who diagnosed me), I felt that I shouldn't have done it, and I think I'm going to have to look for subs.

You can read the story here. 

On to other topics, because although it seems like there are no other topics besides the virus, there are. 

That redhead in the trippy Celebrity Cruises commercial is sure getting a lot of sun. I thought it might be a commercial for skin cancer. I wrote about some of the weird qualities of the commercial   this post  . Until I had so much trouble with skin cancer, I didn't see so many things through its lens.

For the same website, I also wrote about the ways in which I've been lucky. I didn't write about this, but today, Friday the 13th, is lucky for me, because Ben, my first born, was born on a Friday the 13th. I wrote, "Nobody should say you’re lucky to get cancer, but luck is a matter of degree. For example, an acute myeloid leukemia (AML) patient like myself is lucky compared to one who got the blood cancer before stem cell transplants became common practice. In great part, we owe our survival to the so-called Father of Bone Marrow Transplantation, Harvard-trained researcher E. Donnall Thomas, who I wrote about in a piece on what it’s like to be a chimera, a person with two types of DNA. In 1957, Thomas published a report of a new approach to blood cancer treatment: radiation and chemotherapy followed by the intravenous infusion of bone marrow.

From a sunset on the beach to screaming pain on my lips

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Scaffolding on the house

I went from watching a sunset on the beach to having a screaming pain around my lips. Waaaaaa.

It’s the second time it has happened. I applied a chemotherapy cream, 5-fluorouracil, combined with a synthetic form of vitamin Dcalled calcipotriol. It's a relatively new treatment for early skin cancers. Most people know the chemo cream by its trade name, Efudex. Someone in a Facebook group for Efudex users said the calcipotriol gives the former super powers. The purpose was to treat one squamous cell cancer on my temple and other pre-cancers, or actinic keratoses, on my face. It lights up the cancers and pre-cancers and burns them off. I put it all over my face, as instructed, because I didn’t know what was lurking. The sides of my lips went berserk. The left is worse than the right. It burns like crazy. The inflamed area extends onto my skin, creating the effect of a clown mouth.

From when it happened before, I had an anti-fungal cream. I’m not sure why that is supposed to work, but that is what I had. I put it on. By chance I had a checkup with my internist. She said to use a prescription antibiotic instead. I got it and put it on. Then, as directed, I sent a photo to the Mohs surgeon in Boston. He called back and said to use the anti fungal and not the antibiotic. Also he said I could add Vaseline. It might help to stop the chemo cream combination but he wants me to use it a few more days because the squamous cell cancer on my temple isn't red enough.

Man in the kitchen

I’m also treating my hands. This is frustrating. I have treated them before, they get better, and then the actinic keratoses come back. Some people won’t do it. I have a squamous cell cancer on my thumb, so I have to do it although I don’t have to do the full hand.

Today I’m going to Dana-Farber for the light therapy (ECP) and I’ll be interested in hearing what the people at the Kraft Family Blood Donor Center say.

Work on my house has been mostly on the outside, to get the structure safe. On the inside, it has been demolition but not construction. Today, a carpenter finally came and worked on putting the kitchen back together. He said it shouldn’t take too long. I may have this wrong, but I think that when reading Virginia Woolf’s The Waves, I was struck by how comforting she found the sound of the workmen to be. I have the opposite impression. The pounding and drilling gives me a headache. Sometimes I go and work elsewhere. It hasn’t seemed like enough progress. But when I went and looked around the outside, I saw that it really was coming along.

I was sure lucky that the tree hit the garage first.

You might think I wouldn’t consider myself lucky in general, given all the things that have happened to me, but of course luck is a matter of degree. For example, if I had gotten chronic myeloid leukemia (which doesn’t go away) instead of the acute kind, I would still be dealing with it to this day.

On the blog I have shared some of my posts for a site called Health-Union. Recently I wrote one about luck.

It began, “Nobody should say you’re lucky to get cancer, but luck is a matter of degree. For example, an acute myeloid leukemia (AML) patient like myself is lucky compared to one who got the blood cancer before stem cell transplants became common practice. In great part, we owe our survival to the so-called Father of Bone Marrow Transplantation, Harvard-trained researcher E. Donnall Thomas, who I wrote about in a piece on what it’s like to be a chimera, a person with two types of DNA.”

You can read the rest of the post here.

When things go bump in the night

I don't know which end is up.

Well, I know which end WAS up when the tree fell on my house. That's the end of a big tree limb which was supposed to be up facing the sky but which was instead facing across my garage roof (which probably saved me) and into my bedroom window.

My house is a mess, and my two special spaces – my bedroom and kitchen – are in disarray. And that has affected my head. Also the squamous cell biopsies came back as positive, i.e. needing more Mohs surgery, but I found out in an unfortunate way when the system (the Patient Gateway portal) spit out the results in medical jargon (invasive with wide margins and other scary stuff) before the doctor had a chance to call me. I called the office and she returned the call the same day and apologized for that happening. It is more of the same, more Mohs surgery, skin cancer as a chronic disease. She is suggesting a new medication that might cut down on these, but I have to run them by my team due to the side effects.

Bedroom ceiling

I had been hesitant to put it on Facebook because I'm trying to use it less, but I did it anyway and was gratified by the outpouring of support. So that is the good thing about Facebook. If you don't already know, here it is. A tree fell on my house. Actually it was part of a tree. Here's what I wrote, referring to the night of Dec. 18th:

So this happened Wednesday night. I was in bed and heard a big boom. The tree split in the wind and came in right above my head. I had spent around $6,000 this spring to remove dead or damaged pines but this one seemed fine. South Hadley police came over to check me out. I was pretty shaken up but eventually able to sleep in another room. Obviously insurance will pay but I’m not looking forward to how much work needs to be done. Will need to get some areas covered to keep cold out. Oh also there is a big hole in my garage roof. Nobody died or got hurt so that is the bright side.

Things are moving along. The original tree work was done by THE tree guy – Peter Edge – and I don't think he is responsible for what happened. It was a very windy night that included an ice storm. In any case he came the next day and cleaned up the mess. I have a contractor who sent someone over to put a tarp on the garage and the house. I learned a new verb. To tarp. They tarped the garage and the house roof. Spell check doesn't think it's a real word but they were using it. So. An insurance adjuster came and said he has seen worse, such as houses split down the middle. Of course on the news we have all seen worse caused by tornados and other disaster. The copper roof will be a challenge.

And Australia is burning. Of course climate change is a hoax.

But I digress.

Tree guy working

My bedroom has to be emptied out. It is mostly done. Joe and Katie helped a lot. So did my honey, who took apart my brass bed and put it in another bedroom while I was out and about. Before they were moved, I took out some dresser drawers and tried not to put them back until I threw away or gave away some stuff. I have drawers full of cards from the kids. Mother's Day, Valentine's Day, birthday, cuteness and love. I read some and put some back and could barely stand to do it but I threw just a few away some. Buried underneath, a wedding photo in a beautiful frame and a letter from an old flame whose handwriting sends me back. He wrote that he couldn't believe we were 50. I kept the photo in the frame and threw out the letter.

To make room for everything that I need to remove from a large part of the kitchen (above which the ceiling is caving in), I cleaned out a cabinet and found a treasure trove of kids' writing. I brought Ben a notebook of his from 1992 to 1993. A lot was about sports. He also write a Clinton-Gore campaign spot. (He didn't believe Bush, and he thought Ross Perot couldn't win.)  Katie wrote about the adventures of a character named Louise and put out a newspaper.

In the room where I'm sleeping, the radiator snaps, crackles and pops. It is in the old part of the house with radiators, not the quiet baseboards from my room. It is Joe's old room, and the floor is so slanted that I feel like I'm downhill skiing to get out. The morning light comes in so brightly that the first night, even with good curtains, I was half asleep and wondering who turned on a light.

If things come in threes, hopefully I'm done. But I think I might have four. First the car accident, then you could maybe count rolling over on my glasses, then the skin cancers and then the tree. Maybe I should remove the glasses from the count.

I went to two fun Hanukkah parties and had one nice Christmas eve and Christmas morning.

It was great to have two kids living in the house for more than a couple of days.

As usual, I was sad that they left but grateful for all of them.

Wanted: someone to remove stitch and find watch

The craziest thing that has happened in a while is that a gremlin took my watch a day after I took a photo of it on my way home from ECP. That's extracorporeal photopheresis, the light therapy for graft vs. host disease of the skin, and one of these days I'll have to explain it again because I haven't done it in a while.  I took the photo to show my watchmaker friend Bev how the lavender  complimented my wraps, and that must have been the act that caused the jinx. (The bandaid is from a biopsied spot.)

I have tried to trace my movements and have looked in all the corners but it is nowhere to be found. A friend said it would help to turn a glass upside down on the counter. (No luck.) When I lost a bag of scarves, a friend prayed to Saint Anthony for me. But I never found the scarves, so I don't think it worked. I was really attached to that watch. I thought there was magic in the way it changed colors in different circumstances. That feeling when you just can't remember where something i

Has anybody seen my watch?

s is very disconcerting

If you do a search beginning with "is losing things a sign of," it fills in dementia, Alzheimer's, ADHD and depression. 

"Misplacing things often happens in everyone’s life, but when it is consistent and you cannot formulate a plan to to retrace your steps, it is a problem worth looking into more carefully," according to The Cleveland Clinic. I can't retrace my steps, or else I would find it, but no, I don't actually think I have Alzheimer's.

I'm wearing a green one until Bev makes me a new lavender one. What can I say, the replacement and the old one still cost a fraction of an Apple Watch.

What I really have is a problem with a stitch that I got in the first of two Boston visits last week, when I went on Tuesday for a spot check and Thursday for ECP.  I had called to try to get the two in one day, but the scheduler did not get the message. Well, the stitch is the immediate problem but I also learned that I need another Mohs surgery on another squamous cell cancer, this time a tiny spot on the back of my jaw. A spot on my wrist that concerned me to the point I thought it was melanoma turned out to be a squamous cell on the skin, as did the spot on my face. I need to apply Efudex, the chemotherapy cream, for three weeks. 

The one I didn't even know existed turned out to be the one that goes deeper. 

But back to the stitch. I thought it odd that when I left, the nurse didn't mention it. So I followed past procedure and called my friend, Nurse Jo, who lives down the street and removes stitches if there are not too many. I picked her some flowers. She met me in my driveway and asked where the suture removal kit was. I said I thought SHE had it. She said she used up all the ones she had – on me – and we agreed I would call the doctor about it. At least we got to chat for a few minutes.

Kathleen, one nurse, told me one thing, followed up by Kathy, who told me something else.

Similar-sounding names can lead to confusion. There’s Kathleen, the nurse for Dr. Liu, and Kathy, the nurse for Dr. Lin.

I had been talking to Kathleen about an upcoming appointment with Dr. Liu when she saw an unusual occurrence, and opening with Dr. Lin.  So she gave me the appointment. I was going to drive myself, but I took J up on the offer to drive me, and it's a good thing I did. I didn't expect to have three spots biopsied and get multiple spots frozen. She said I would get fewer skin cancers if I stopped doing my outdoor activities, but she knows they're important for my mental health, so she wouldn't tell me to stop. I protect so much of my skin that the only thing left would seem to be to get a mask for my face and a scarf for my neck.

A few days ago I called Kathleen about the stitch. She said anyone could take it out. I asked about the biopsy results, and she said Dr. Lin went on vacation and would get back to me when she came back but I should feel pretty good because if it was something serious, then she would have called me.

A day later, Kathy called and said the spot on my jaw is invasive and needs surgery. 

I know the difference between invasive on the skin and invasive inside my body, but I ask each time. I like to make sure, and hearing it again is reassuring.

Ann, my blogger friend, died from squamous cell cancer that had spread from her tongue to her organs. It is a different kind of invasive.

Meanwhile, the issue of the stitch is still unresolved.

Yesterday after my session at Amherst Community Acupuncture, my acupuncturist said she could try to snip it out. We sat by the window and she went after it with a scissors. She said she thought she got it all. 

Actually, she didn't. Two little bristly threads are sticking out from my cheek. I don't think stitch removal is in the boyfriend description, and I don't want to go all the way to Springfield for a doctor's appointment. Friends suggested the CVS Minute Clinic. I think that tomorrow, that's the way I'll go.

Yesterday I got a call about scheduling the Mohs, the procedure in which a surgeon removes a skin cancer a layer at a time until all the margins are clear. What I like least about it is that it keeps me off the tennis courts for a few weeks. The needles going in for the anesthesia come in second place in the dislikable department, but the doctor does such a good job that it isn't as bad as I thought it would be when I had my first one.

Odd that a leukemia blog ends up being more about skin cancer.

Running around running two businesses

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Sometimes it feels like I have two jobs, the business of running my medical care and of running my so-called freelance writing business. An example of this is how the other day played out, when I wanted to write but couldn't fit it in.

I am concerned that a spot on my wrist could be skin cancer. As per a nurse’s instructions, I sent a photo of it to one of my dermatologists, Dr. Liu, on Patient Gateway, the Partners portal, but the photo is useless because it rejects the larger size and when you make it smaller, it is pixilated and therefore of no use.

Dr. Liu said she would look at it when I see her at the end of July. I called her scheduler to see if there were any earlier openings and she said there was a rare occurrence! An opening with Dr. Lin at 11:15 yesterday at 221 Longwood in Boston.

This led to a domino effect of canceling the occupational therapy appointment I had for 2 p.m. I will have to do my hand exercises because she measures my progress on opening up my hand more, specifically my left one which was starting to look like a claw, due to tightening of the fascia resulting from graft vs. host of the skin. The ECP is helping in other areas by loosening up my skin but not in my hands.

Then on to calling in prescriptions. I just call the pharmacy and speak to the recorded creepy voice except for one doctor who says the automated refill requests go to another office so I have to call to make sure she gets it.

Next it was time for visual field testing at the ophthalmologist’s. This is nerve-wracking. You have to push a button every time you see a flashing light. They are testing for possible glaucoma and loss of peripheral vision. My mother had it so I’m at risk. I did it last year and was OK. The technicians were cranky. I was tired.

“OPEN YOUR EYES WIDER!” they said. “DON’T LOOK TO THE SIDE, JUST FOCUS ON THE DOT.” They did the right eye twice because the machine wasn’t working the first time. By the time they got to the left eye I was so tired that I wasn’t catching the dots.

I’m afraid that when I see the doctor, she’s going to tell me that I failed on the left side.

I tried to change today’s ECP so I would not have to go twice in one week. I didn’t get a return call or email. I’m going back for the procedure today.

I’m having trouble getting Maddie into the car and might have to get a dog ramp.

I took an extra gabapentin because I take less than the therapeutic amount, due to the side effects. Nobody wants to take more but I wanted to see if it helps the neuropathy because the CBD isn’t doing it. I’ve heard I could take more CBD, but nobody knows. Before tennis on Monday, I took an extra gabapentin and had one gummy that is 1 to 1, CBD to THC. It is just a tiny bit of THC but it was bad for my tennis. My arm was wobbly and I wasn’t making my usual net shots. I think I should stick to THC at night. In any case, either I warmed up or the THC wore off, because by the third rotation I was doing fine.

I guess I could have skipped tennis to get some writing done, but as exercise is part of my health care routine, I wasn’t going to do it. In summary I seemed to spend most of the day planning and scheduling and rescheduling appointments, and not any time writing. It is necessary but not satisfying. All I can say is we transplant recipients sure need a lot of maintenance and sometimes it’s hard to get other things done, in general.