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!

2nd shot in the arm and something growing on my nose

Wintry day at Ashley Reservoir

I got my second shot today, yay! And on the same day, I found out that our beloved Shakespeare in the Park is going to happen again this summer. So, things are definitely looking up.

I have a new doctor whom I have only met once. Here is something I wrote about getting a new doctor. These changes make me think of my sweet friend Kelly and how devastated she was when her therapist left the area. Of course there was so much more to what caused her to take her life. But it is the last thing I remember her talking about. Sorry there is no transition to this next thing...

Medically, I mostly live in dermatology now. There is something on my nose, and it is making me cross-eyed. And no I did not tell a lie. 

It goes like this. Dermatologist #1 biopsied it and said it was another squamous cell cancer and sent me to Mohs surgery. There, dermatologist #2 said it was not bad enough to do surgery on and said to apply the chemo cream combination. It almost went away, but not all the way. Dermatologist #3 said it should have been removed, because it is growing, and said I should go back to Mohs. YES I have that many dermatologists. Don't ask. Maybe some other time. 

I sent a photo to dermatologist #2 at the Mohs surgery center. The person who took my info said she would get back to me. She got back to me and said to come in on April 21st. I said THE THING IS GROWING on my nose. She excused herself for a moment (I'm thinking of a car salesman coming back with a better deal) and said to come in on March 31st. She said the doctor probably wouldn't do Mohs but would get it off of my nose somehow. (Presumably a better way than having me pick it off.)

Dermatologist #3, who is really my first and number one dermatologist, said that was OK.

But I nicked it with a washcloth and now it is a little bit detached. I thought of calling to see if they have any cancellations before that, or, alternately, asking dermatologist #1, who biopsied it and who is easier to get an appointment with, if she could see me before.

They are all in Boston. Last night I dreamt that I called the Mohs office early in the morning and was surprised to hear the doctor herself answer the phone. She sounded sleepy. I said I was sorry. She didn't seem to mind. She gave me the phone number of a different doctor to call. I said I didn't recognize the number and asked if it was local. She didn't tell me. I couldn't read it that well. I tried to dial and had trouble with the phone. At first it was a rotary phone. Then it was a cell phone that I couldn't operate. 

The old "can't dial the number frustration dream."

Well in any case, as I said, I still think things are looking up.

We took a nice walk around Ashley Reservoir. It was good to get out of the neighborhood, even if only to the next town over. I didn't even have much PTSD about the time I got lost when running my last Turkey Trot. 

In a couple of more weeks, I should be good to go somewhere else. Maybe even into Ben and Meg's house to have real hugs with those cute little grandkids. 

Wandering around town, wondering when my treatments will start again

Leading the way at Bachelor Brook/Stony Brook Conversation area

It turns out that the trip to the dermatologist was worthwhile, because the spot next to my knee was indeed another squamous cell cancer. It was small enough and early enough that the biopsy took care of it, and I won't need to go back for another Mohs.

Since we last talked, I went to the dentist again. Everything that used to seem normal is now a bigger deal. The gremlin took my mouth guard, and I needed another one made so that I don't grind down my remaining teeth. Turns out that the one I lost was four years old, and you apparently need a new one every four years, so losing it was not a big deal.

I wasn't as nervous about going as I was the last time.

For somebody with a big mouth, I have a small-sized mouth, and he had to use a kid-sized mold on me. Maybe that is why the store-bought kind made me gag.

I wrote about ECP, the light therapy, having the unexpected benefit of improving my tennis game. It just came out, but I wrote it in the days when I was still playing tennis and getting ECP. The procedure is on hold, but every three weeks, Diane at the blood donor center calls to see if I am coming. I feel like I'm in the movie Groundhog Day. I tell her that Melissa said that until further notice I am not supposed to come. Then three weeks later I get a reminder call saying not to come if you are sick, etc., and then the call from Diane asking if I am coming. She said this was my last scheduled treatment and recommended I speak to Melissa about whether and when to start up again.

Ferry Street scenery

She said she didn't think you're just supposed to stop. I said I will check in with Melissa but also said I think they've totally forgotten about me. I was trying to be funny but I was half serious. I haven't had a blood test or appointment in a long time. Mine is not the only non-COVID care that is falling through the cracks.  But it is worse for those who are truly sick as opposed to people like me with chronic health conditions.

If I start back up, I'm not sure how I'm going to do it. I can't possibly reach out to the crazy driver pool. It is not ideal for me to drive myself round trip or to ask someone to drive me or to ask the usual suspects if I can sleep over. I told my friends I could drive myself and highly caffeinate on the way back, but they didn't think it was a good idea. I will have to do some consulting.

The other day, I took a nice social distancing walk with Katie. We went around the town's Bachelor Brook-Stony Brook Conservation Area and then walked up to McCray's. I haven't had ice cream in a while and enjoyed my mint chocolate chip in a cone. They had a line drawn at a distance from the window so people couldn't crowd around. It wasn't very crowded, so that was good. We sat at opposite picnic benches.

I might not make it to a beach this year. Maybe I will, I don't know. Things seem to change so quickly. The thought of not going to a beach, after spending summers in Atlantic Beach and going to the Cape most every summer in my adult life,  is a bummer. But Katie and I talked about how lucky we are to be in such a beautiful, uncrowded place.  When I go for a run, I often stop and say, "Wow, just wow," to the birds, of whom there seem to be more lately, or maybe it's to myself. Today I went six miles, before it got really hot. I started to walk my Old Dog in the morning, but it was too hot. She seemed to enjoy walking later in the day.

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.

On helpful people, hurtful people & more strange happenings

Brown dog, red thumb

A while back, I graduated from occupational therapy, which was for my hands and wrists, but now I have gone to physical therapy, which is for my neck and shoulder. Because there always has to be something.

Although both are at Cooley Dickinson Rehabilitation Services in Northampton, they are two different departments. The PT for my neck is because of lingering restriction in motion and pain after the car accident, and the shoulder pain was there before but has become exasperated. I was chatting with the PT and told him a tree fell on my house, and he said he knew, because it was in the notes. He seemed to maybe think this was as curious as I did, because it didn’t affect my symptoms, although it did mess with my head. I guess Melissa put it in there for background, just so the PT would know he might be dealing with a doubly traumatized person. (Car accident and tree fall.)

A friend from the old days came over yesterday to help me get the books and the bookshelf out of my room. We had tea and ruggelach. It was nice to catch up. My room is almost emptied out, as is the part of the kitchen that needs repair (the whole area where the table is).

A few more strange things happened, and I am going to put these under the category of people behaving badly. Hopefully my run of it is finished, but as I know from experience, you never know what else will happen.

1. A guy who I hardly know blew up in my face when I said something he didn’t like. He spewed obscenities, getting in my personal space the same way that DT did with Hillary Clinton in that horrible debate. I said not to curse at me, and he cursed some more. I have a thin skin, literally and figuratively.  I wished I had reacted the way I know some of my friends would have done. They would have gotten back in his face. Or maybe calmly walked away. I instead burst into tears and THEN walked away. (Little PTSD going on here.) He shouted after me that I was a prima donna. Sorry if this sounds a little vague due to missing details, but I’m doing it this way for a reason.

2.  In a group email about skin cancer, I wrote that doctors have told me that my squamous cell skin cancers are annoyances that are very unlikely to be fatal.  That was annoyance with a capital A, as I wrote in this post about skin cancer as a chronic disease. Someone wrote that there’s no difference between "the deadly kind" and "the annoying kind on the skin." She said it because she had lost a relative after a misdiagnosis. So it seemed to me that she was invalidating what I said, or suggesting that my doctor had it wrong...and that because her relative's was deadly, mine had to be also. I hate to use such a trendy word as triggered, but, well, I was triggered. I wrote her back, saying so. People can say things behind email, text and Twitter in a way they would not to your face. We exchanged a couple more emails. The last one that I wrote, I didn't send, thinking I would regret it.

I added the photo of the dog because 1) It's a cute one of her eating one of her Christmas cookies, and 2) the red on my hand is from treating pre-cancers with a chemotherapy cream, Efudex.

3. The low tire pressure light went on in my Subaru. This was an annoyance in my old Subaru. It would go on for no reason. But just to be sure, I went to Steve Lewis Subaru. It is closer to me than Bertera Subaru. It was a Saturday. The guy at the desk said it was probably the cold but he said if I waited three hours someone could check it. Oh and also, it would be $14.99. I said, seriously? He said they had to pay the technician. My local service center, Veryl's, has done it before for free. But they weren't open. So I drove around not thinking much about it. On Monday I went to Bertera Subaru. They checked it for free. The tire pressure in the front passenger side was 16 pounds. It is supposed to be 32. The technician checked and found a nail in it. I went down the road to Town Fair Tire and got it patched. I happen to have bought my car at Bertera, but still, should that make a difference in a dealer having the courtesy to check my tire pressure?

In summary it's a good thing I didn't have to add a car accident to my list of woes.

Mishaps in the house, more messes on my skin

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New sleeping quarters

My squamous cell radar, like my New York parking radar, continues to point me to the right spot.

Which is to say that after I realized that squamous cell cancers in my case at least are areas that won’t stop flaking, I’ve recognized the difference between dry skin and something suspicious. Unconsciously while I was writing (or pondering), I rubbed my finger along an area at the top of my cheekbone near my ear – the sideburn area – and came away with blood. This was a while ago. I forgot about it and then did it again more recently and realized I was picking at some spots that were flaking.

I also felt something scaly behind my head, at the bottom of my hairline.

This happened a few months ago and so I made a dermatology appointment in Boston. Dermatology appointments are not the easiest to get. I went Monday and sure enough ended up with four biopsies. Three for the little cluster near my ear and one down at the back of my head. I assume that I will end up with at least one Mohs. Which means missing a couple of weeks of tennis, sigh.

The after visit summary sounds sort of creepy:

• Neoplasm of uncertain behavior of skin
• Seborrheic dermatitis
• Actinic keratosis
• Personal history of other malignant neoplasm of skin

Actually a skin neoplasm is just an unusual growth that could be cancerous but also noncancerous.  Those stupid actinic keratosis are red spots that have reappeared on my hands and arms. They could be precancerous. I’m supposed to retreat them with a chemo cream combination. I feel like I already did that. Because I did, several times. You are supposed to wrap your hands up in Saran Wrap or some other but I told the doc that was very hard to do, and she agreed. Wearing purple exam gloves to bed is the next bed option. It is supposed to turn the spots bright red and since I'm doing some holiday visiting, I'm not quite ready to do it.

Here's something I wrote about a pill that is supposed to cut down on skin cancer incidence. 

Usually I try to combine dermatology with something else, but the appointments are hard to get – I couldn’t even get one with my regular doctor – so I took a “stand-alone.” It was kind of silly because I also went on Friday, for ECP (the light therapy), which I had absentmindedly changed from Thursday because I thought we had book group Thursday, which is our usual day. It had said right in the emails that we were doing it Friday for our holiday party, but despite telling myself repeatedly to write things down, I didn’t do it. So I went down to Jo’s on Thursday and was uncharacteristically early, as in, a whole day early.

 Luckily I made an early appointment on Friday, 1 p.m., so despite getting caught in Friday traffic, I made it to the meeting almost on time.

Ooops!

It might sound like I’m launching into my version of Alexander and the Terrible, Horrible, No Good, Very Bad Day, or – take your pick – the dog ate my homework. Because Maddie decided she is done with stairs so we changed our routine, and this caused me to break my glasses. Not direct cause and effect, but you will see. She also decided she didn’t want to jump up on the couch. I remember when we wanted to keep her off, and now I’m sad for her that she can’t get up. In addition to glucosamine, I got her some CBD dog biscuits that seem to help; one night she even ran up the stairs. But that was the only time.

I got her a new big bed for the den. For our morning routine upstairs, I would lie down and put my glasses under my dresser and then snuggle with her, arm over paw, or paw over arm. When we changed to downstairs, I didn’t have a habitual place to put my glasses. I should have put them on top of something but instead I put them next to me…and rolled over onto them and heard a crack. Then I had to hold the broken glasses up to my eyes to find the spare pair. I ordered a new pair from Village Eye Care, at the Commons. I know you can get them cheaper on line or elsewhere, but I want to support my local business.

The doctor (my friend Steve Markow) came out to chat. I told him my eyes felt all squinty and dry. He went into the back and came out with some sample drops and put them in my eyes. We gave each other an update on our families and had a hug. You couldn’t get this if you ordered on line.

Yesterday at the end of the storm, with mush on the ground, Maddie and I walked to the corner and across the street. A man shouted out from a car, “Come on old lady, you can do it!” I said, “Are you talking to me?” He laughed and said, “No, the dog!”

Earlier in the day, when we were taking a walk down Sycamore Knolls, a car slowed down, and dog biscuits flew out the window. It took me a minute to realize that it was Bert Willey, my painter. A few got lost in the snow, so he threw out another. Then she found the rest in the snow.

 Guys in cars, talking to dogs.