Saturday, January 25, 2020

Visit brightens up a cloudy day

If I was writing a weather story at the paper, I would have to come up with something better than this, but since it's my blog, I'm gonna just go for it and say a visit from Ben and kids brightened up a cloudy day. 

We had a little something to eat, played and read books, then visited the Odyssey Bookshop and the Thirsty Mind. Maddie came also because she didn't want to be left out. 

Gotta save the bookstores!

Two-year-old Callen walked in and said, "It's so beautiful."

The moment was precious. And it is beautiful.

We went downstairs and played some more and bought a few books. They have a great area for kids. In the picture, Nell is looking at her "Frozen 2" book.

When we stood at the door waving goodbye back at my house, I had visions of my parents, in the driveway at Atlantic Beach, waving goodbye when I drove off with the kids after a visit. And now my baby has his own. They are so sweet, if I do say so myself.

You can't see it, but a piece chipped off one of my front teeth. I put off calling the dentist but finally made an appointment. I don't have dental insurance because what I had was useless, doing me no good when I needed a lot of work during the period of the toothache from hell. I'm afraid I'm going to need more than a quick repair because those teeth are on the verge of disintegrating. 

I am doing the blood treatment, aka the light therapy, aka ECP for GVHD, or extracorporeal photopheresis for graft vs. host disease of the skin, every three weeks now, instead of every two. My skin seems to be behaving in terms of not tightening back up. Though not behaving because I have Mohs surgery coming up in early February on a few spots near my temple and one on the back of my neck. The one on the back of my neck feels long. I hope I don't end up with a hole in my neck the way I ended up with a hole in my ankle, closed up with the skin graft from my my side.

The drivers to Boston have been fine, but the ride home on Thursday wasn't. At 8 p.m., when we were almost home, the driver got off at Exit 8 instead of 7. I asked why and he said dispatcher said to pull into the Shell Station. We waited in the dark. The driver didn't know why . The dispatcher drove in behind us and poked his head in and attached a transponder that it turned out driver didn’t have. Then he asked the driver if he wanted a shift for tomorrow. I said can’t you talk about that later? the dispatcher said, Is there a problem or something? 

It was unclear why dispatchers of companies that drive patients don’t understand why patients might have a problem. The driver was very apologetic and I said it wasn't his fault.

In other news, I wrote about survivorship plans: why they are important and why I'm sorry I missed that boat. 

I started by saying I felt funny saying anything negative about the cancer center where I was treated. 
Of course the cancer center is the Dana-Farber Cancer Institute. And feeling "funny" doesn't exactly describe it. It's more awkward, or guilty. But the truth is, I had a wonderful social worker (Mary Lou Hackett) who got taken away, despite my entreaties, during a reorganization. I don't know what I or my family would have done without her. On paper I have a social worker now, but I only saw her once or twice and asked not to see her again. She didn't seem to "get it." More details are in the post. I know where to find Mary Lou and sometimes I leave extra time and go find her. She reminds me of my mother. The two cardigan ladies had a special bond. As I'm writing about her, I'm thinking it's about time to go seek her out.

As a journalist and a superstitious person, I can't say that at the end of this month I'll celebrate the 11th anniversary of my fourth transplant, or, my 11th re-birthday.

I have to say that at the end of the month I hope to celebrate, or expect to celebrate, because you never know. Or I can just say it and add keinehora  and spit three times to ward off the evil eye.

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.