Monday, January 13, 2020

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.

Saturday, January 4, 2020

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.

Wednesday, December 18, 2019

Mishaps in the house, more messes on my skin

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.

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.

Saturday, December 7, 2019

Big hugs for fantastic kindergarten teacher

With Patty Bein in Village Commons gift shop
The world has it back-asswards by rewarding multi-millionaires who do crappy things and not rewarding teachers who shape children in their formative years. I thought of this when I bumped into Pat Bein – Mrs. Bein – who had all three of my kids in kindergarten in a sweet little school, The Horizon School (no longer in existence) in South Hadley Falls.

Of course I had something to do with my kids turning out as great as they are, as of course did their father, but I wasn't exaggerating when I told her that my kids are who they are because of her. We were shopping at the Village Commons in the Arts Unlimited Gift Gallery, where most items (except the earrings I wanted to buy, insert frowny face) were 20 percent off during the annual Village Commons Days. We gave each other a big hug and talked for a few minutes. I showed her photos and she said their grownup selves looked just like their kindergarten selves! She remembered how worried I was when I left Ben for the first time and he cried his little heart out as I went to work. I called her as soon as I got to the newspaper, and she said he had stopped crying right away. She made me feel confident that they were in good hands. I did the glasses on, glasses off, photo in the middle of the displays at the store. At this point, my honey turned to leave. The store owner said he had lasted longer than most.

Glasses off

Meanwhile, Thanksgiving seems in the distant past, but I forgot to write that our little gathering of Joe, Katie and Jim went well. When I learned that it would be just us three, I felt forlorn. Then I sat back and thought about how silly it is that Thanksgiving is supposed to be big. In this post for, I wrote about how Thanksgiving with my former husband is easier than it was during our married days when he got annoyed with the mess that my mother and I made in the kitchen.

I wrote, "It is easy to lose perspective when you’re as far “out” as I am. But periodically I remind myself to read what I wrote on my blog when I relapsed for the second time: 'I have been crying a lot, picturing myself at the end of the road. Thinking I won’t see my children finish growing up, won’t see my grandchildren.' So what if I don’t see them on a certain day? I’m thankful that the generosity of my bone marrow donor made my predictions wrong on the dark relapse day."

By the way, the post was dated Dec. 25, 2008, and I gave it the headline, "Downhill all the Way."
Those were the days that people commented directly on the blog rather than on Facebook after I share. Twenty-five people commented. Two of them have died. One of them is my friend Patricia, aka PJ, my doppleganger until she wasn't. She wrote, "Adding my support to all the comments here. I wish I could do more than sit on the sidelines watching as you deal with this. Even though I can literally picture where you are (you could be in my old room), I can't imagine what you're feeling. It's all too much, and just wrong."

I really miss my friends PJ and Ann and our little sisterhood of leukemia survivors. We all knew what the other was going through, and we could sometimes even joke about it.

But I have digressed, as usual.

Oh, by the way, circling back, I'm sure that Jim, my then-editor, wasn't the first one to say back-asswards instead of ass backwards, but I first heard it from him during my cub reporter days at the Holyoke T-T, and I thought it was so clever and it has stuck in my head.

Tuesday, November 26, 2019

Thinking of different ways to treat a headache

Good headache medicine, with Katie and Nell
Due to the lingering headache after the car accident, on Thursday at my checkup Dr. Alyea said I should get a CT scan in case there was a little bleeding on my brain. He said it would not be the biggest deal if it was because then a neurologist could just put a needle in my skull and fix the problem.

It sounded like a big deal to me, but luckily the next day the CT scan showed I did not have bleeding on the brain. It's a good thing I didn't need to get a needle in my skull because first of all it did not sound like fun and secondly, I have enough of needles. The day before at the light therapy, I thought my nurse had gotten the needle in my troublesome left arm on the first try, but it was too good to be true and she had to do it again. All these days later I have a big black and blue mark. It's not a pretty picture but since I like purple I thought I'd take a photo.

At least before the light therapy, when I had my blood drawn for my checkup, I asked for and got Tina the nurse who used to be my BFF in the Kraft Family Blood Donor Center and who moved over to the blood draw on the second floor. She knew what kind of needle I needed in the right arm, for the return, in the photopheresis (light therapy for my graft vs. host disease)  that I was going to get after my appointment. So she put it in and left it in and said to tell them to remember to take it out because if I went home with it she would lose her job.

So, in case this is confusing, the timeline was, 2 p.m. blood draw, then appointment with Dr. Alyea, then the light therapy at 4.

At my appointment, Dr. Alyea said I could possibly cut down on the Valtrex. I said the last time I did that I broke out all around my lips. He said to get two shingles shots first (yay, more needles) and then try to cut back. I can get the shots at my pharmacy.

I have had to take more ibuprofen for the headache than I care to take. Ibuprofen: bad for kidneys, Tylenol: bad for liver; oxycodone, well, you know. I have settled on a low dose of the ibuprofen, maybe one tablet when needed. The Saturday before, I woke up with a headache and took a pill because I didn't want to have a headache for going to the UMass basketball game with Ben, Nell and Katie to hear Joe announce.

I love to listen to Joe announce. I loved watching my baby watch the game with his baby. I love hanging out with Katie. Love, love, love. As writers we try not to be repetitive, but I think it's OK if you're repeating the word love.

I didn't get to see the whole game because Nell was afraid of the Minuteman so we went out into the corridor and I bought her a little basketball and a big finger. She waved the finger at people passing by and said "Go UMass!" We played a little game to see how many people would answer. A lot echoed her. At that point my mind wasn't on headaches or needles.

Monday, November 11, 2019

Redo of Boston trip, this time without mishaps

It's probably not cool to write that I was in a car accident and then disappear, so, I thought I would check in and report that I made it to Dana-Farber on the second try, a week after I was on my way there and ended up in the ER. I still have an on-and-off headache but not as bad as it was.

I was nervous. It was rainy and windy, just like the week before. The driver was an old hippie (nothing wrong with that) who had Dark Side of the Moon on the radio. Nothing wrong with listening to an album whose "heavy lyrical musings on the human condition inspired countless bong-fueled headphone listening sessions in darkened bedrooms." It carried me back to college and my "junior year abroad" at Wesleyan University. I remember a particular scene with the songs playing in the background. Days of innocence and all that. In the car in the rain with a headache it kind of creeped me out.

If you have  to go to the hospital for a procedure, going to the Kraft Family Blood Donor Center is a good place to do it. My ECP session (the light therapy on my blood) started out on a good note. I must have been well hydrated because the needle in each arm went in on the first try. Interesting what gives me pleasure! They are all so friendly, and they all hate Donald Trump. They have are funny and kind and are good at fluffing pillows. From one of them I learned something new. He has a spiritual advisor. My nurse for the day said another nurse had shown her a video. I thought maybe she was making it up. But sure enough on my way out, the other nurse showed me the video of Paula White offering a prayer condemning the president's opponents, "accusing them of being aligned with evil spirits and using sorcery."

School photos!
The nurses have become an extended family.

When I showed one of them the school photos of the kids (the grandchildren, who, back in 2008, I thought I would never see), her mouth dropped open. I thought something was wrong. But it wasn't. She said she was thinking how much Nell looked like a photo of me, as a child, that I had showed them a while back. I don't see it, but some say that Katie looks like me, and I don't see that either. In any case I like showing them off.

The drive home started off on a strange note that was different from the strange one on which the trip had begun at 2 p.m. that day. Usually the drivers live in Western Mass, and the one who drives me sticks around. For some reason I had a Boston-based company. The old hippie driver had complained that he had been driving since 4 a.m. and he had no idea why they sent him out to get me. A different driver was going to bring me home. I said I hoped they wouldn't forget me. They didn't forget me, but I had another who lived in Boston, and he didn't seem to know the route back. I wasn't paying attention when we headed back around 6:30 p.m. Then I noticed that he was on Route 20. I asked why he wasn't using the turnpike, and he said it was because his Waze had told him to go that way. I said there were a lot of lights on this road and he should take The Pike.

"I can't help it that there are a lot of lights," he said.

I asked what his app said our ETA was. Mine said 8:30. His was around 9:15.

He agreed to find the turnpike entrance.

Wednesday, November 6, 2019

Car accident leads to week-long headache

I was in the back seat of the first car
I haven't complained lately about the drivers to Dana-Farber, because actually they've been fine. I have to complain about my ride, however, last week, when another driver on the rainy and windy day, swerving to avoid a car that had hydroplaned, hit the car I was in instead. I was amused by the idea of getting my blood sucked out on Halloween but it wasn't to be.

We were on the ramp at Exit 14 – almost there – so at least we were not going fast. (Most everyone goes further to avoid Route 9 but this driver, Michael, says they are the same.) In any case I was sitting in the back, on the passenger's side (that was another stroke of good luck) and minding my own business eating an apple when I felt an impact from the left side of the car, and my head banged against the window. The car got pushed off onto the side of the road. I got out, as did the girls in both cars. I called 911. Michael called his dispatcher, angrily talking up a blue streak in Russian. (I hope the hit on the head hasn't made me spew out cliches because I realized I just used two of them.) I wish I knew what he was saying. The one behind us said she had just called her mother. I thought maybe she should have called 911 but I did it. She said it was her first accident. I told her nobody died and just breathe. I remember being in an accident and it being my fault and being screamed at and it not being helpful, years ago. You don't cause an accident on purpose so I wasn't really angry but I'm pretty sure I was in shock. 

A paramedic arrived and asked me if I knew my name and then asked if I needed an ambulance. He said he had to get out of there as quickly as possible because it wasn't his jurisdiction. (Sorry for the inconvenience!) The police officer who came said the paramedic could leave. He got everyone's information and said everyone should get off the road. 

Nice setting for rainy day run
I called the Kraft Family Blood Donor Center, where I was scheduled to receive ECP, the light therapy on my blood, and Ellen, the PA, said they couldn't possibly do it because they use a blood  thinner, heparin. Michael said he would take me to the Brigham and Women's emergency room. He got all discombobulated and said he didn't know where it was. I said I could get it on my phone. Then he said he knew where it was, but instead he took me to the Beth Israel Deaconess Hospital ER. Then he turned around and headed towards the Brigham when I said that wasn't it. I could see it on the left but we were stuck in traffic so I said I would just get out and walk the block. (Probably not a good idea.) At check-in, the guard had me stand on line. (Still a New Yorker.) I said I thought I was in a little bit of shock and had been in a car accident and maybe someone could take my information. The next person saw me and got me into triage. My blood pressure was 200 over 83 or 84. I started crying. The nurse took me to a bed in a line of beds in a corridor.

A couple of doctors checked me out and didn't see the need for CAT scans or anything invasive. A doctor gave me some Ativan and two Tylenols and an ibuprofen and said to check in with my primary. The docs said I would need to wait a week to go back for the procedure. I was out of there on time for the frazzled Michael to pick me up. His car was damaged on the drivers' side but it was drivable. I'm lucky that I wasn't sitting behind him because then the impact would have been worse.

Healthy car lunch
I've had a headache on and off all week. My efforts to write have not been fruitful; I get a headache when looking at the screen. I did have to do interviews for the story I'm writing for Chicago Health Magazine, on Parkinson's Disease. There is no real evidence to support a causality between head injuries and Parkinson's, although there is some speculation, but that didn't stop me from going partway over the cliff. Back at the newspaper, we un-woke-ily said we had the disease of the week when we wrote about various horrible things that happened to people. comes another cliche, it is par for the course for me to think I'm going to get Parkinson's. I have had worse head injuries though and so far so good.

I called my internist's office on Monday. I used to see Dr. Berger, now retired, who showed up on the tennis court at the Enfield Tennis Club's Friday mixer last week. He is the doctor who diagnosed me with leukemia. It was definitely interesting to see him the tennis court. I didn't end up playing with him or against him but I might some time. In any case I talked to the secretary for the doctor who replaced him and told her I was considering going to my chiropractor. She said she didn't know about the ER visit and said it was a good idea to go to the chiropractor. Then I got a call from another woman, at the same office, (first Lisa, then Meg) who said she knew of the ER visit and wanted to know if they could help me. Insert eye roll. 

On Monday, Keith McCormick, my chiropractor, did some tests and adjusted my neck. My blood pressure was still high but not crazy like it was. He said the high BP made sense since I've been in pain. He said I probably had a slight concussion and a case of whiplash. I have called the internist's office and left a message for Meg, to see if they want to see me. As it stands, I was scheduled for acupuncture today so I went ahead and did it. I'm going back to see Keith on Friday and going to ECP tomorrow.

I got two calls from Pilgrim Insurance Company, representing the driver of the car I was in. First Greg, then Joanne. I talked to Joanne. She wanted to know what happened. I asked what she knew. She said she didn't know I had gone to the ER and she wanted to know how I got there. PEOPLE. Wasn't there a report? Just talking to her increased my headache, which I thought acupuncture had ameliorated this morning. I told her that my chiropractor said I had a concussion. She said, "JUST a chiropractor? They have different training." I sensed she was getting at something, like, maybe the exam didn't count. I said I have also checked in with my primary. She asked about loss of work. I said I'm a freelance writer who needs to look at a screen and it has been hard to work. She gave me the claim number and said to send the company all my bills.

Today I have a dental checkup. I love Dr. Debian, of Holyoke Dental Associates, and I'll be interested in hearing what he has to say. 

The car accident day had started out well. I figured I should do a little running in preparation for The Hot Chocolate Run. I went 3.5 miles in the drizzle and got a taste of the good feeling of running in the rain. The leaves made a carpet. I was pleased that I had done it and that I hadn't tripped. I made a healthy lunch and sent a photo of it to my friends. I said I had forgotten to put in a fork but was making do. Then I texted that on a more serious note I had been in an accident.

Silver lining: At least the pain in my head has distracted me from my neuropathy.