Two seders and an Easter dinner

Callen and Nell

I was a little under the weather leading up to Friday night, and I thought of not going to the home of my extended family, the Chipkins, for the first seder, but I rallied. We have shared many joyful celebrations and one of the worst nights of our lives. At the seder, someone almost snuck in the name of the Orange Monster (this is a hint regarding that bad night, in 2016,) but a murmur went up in the group to get us back on course. I'm always glad to be with this warm, welcoming family. It's a time of being grateful for many things, and the next day in South Hadley, we were all grateful that Joe took over in the kitchen at our seder after I got things going, because who knows, I might still be serving the potatoes. We have a wonderful tradition: Diane leading a beautiful seder, with contemporary tie-ins, and such must-haves as David's pot roast and Bob's booming baritone version of "Let my People Go." Having Nell and Callen "play" the piano was a joy. Playing with them was a joy. Even being able to get down on the floor and up from it is a joy, and in the theme of the on-and-off 10-year retrospective, here's a post about how I couldn't have done it when I was in the hospital, needing platelets and blood after one of many trips with Joe to the ER. It was a little less than four months after my fourth transplant. I had a fever and was worried about what might be coming down The Pike this time. It turned out to be another fungal ball. I wrote in this post, that after a little walk, "I got dizzy and felt like I might faint. I knew that my blood pressure had fallen. I made it back to my room, and when the nurse took my pressure (standing) it was 65/54. The episode earned me five hours of IV fluids."

Being under the weather now, as compared to then, is obviously no comparison. I've been dragging my feet, literally and figuratively, about doing The Gift of Life 5K in Boston this coming Sunday. Dragging literally, because it's hard to shake off the neuropathy-induced lead boot feeling, and figuratively, because I only signed up today. The Gift of Life is the organization that got me my donor; I signed up for the run last year but at the last minute went to Costa Rica, so when they asked again this year, it seemed like an important thing to do. To make a donation, please click here.

I haven't been running very much and want to get in some little runs before I do it. Yesterday I went a little less than three miles (OK, 2.7), then came back and jumped in the shower so that I could be ready for my next activity, a trip to Framingham for Easter dinner at the home of my Partner/Boyfriend/Honey/Beau's son. Could we take a vote? An Easter egg hunt awaited us. When we got back, we took Maddie for a nice walk.

Today I'm dragging and seem to have neglected the part about finishing the cleanup. Tomorrow is another day...

Earlier in the week, it was AML World Awareness Day, and I wrote about more than 15 years of knowing more than I never wanted to know on the topic.

A little bit of PTSD can go a long way

Illustration from Skincancer.net

I'm trying not to duplicate what I write in the blog and what I write for the skin cancer and blood cancer platforms of Health Union. So, I probably didn't share on the blog how I had cryosurgery that made me cry.  If you go to the link you can read all about it. Or not.

I got the biggest blisters on my hands and on the top of my nose. Good thing it wasn't date night. I knew I shouldn't have done it but I popped a few of them. They were ballooning and just asking for it. I left one alone. Guess what? The one that I left alone healed faster. I also wrote one about the problem of skin picking.

The other night I had a nightmare that conjoined some of my trauma and anxiety. Also I realized that something from the news had seeped in.

I dreamt that I was in a bed in a hospital room where relatives were sitting. My doctor said he was going to stick a needle in me and do a major procedure. I would go under. If I came out on the other side, I would be healed. But I might not make it through the night. He said someone should stay with me all night. But then my bed was in the hall and I didn't know where people would sit. Analysis: Stem cell transplant, coma, touch-and-go night when they really weren't sure I would make it. And the thing about the bed in the hall: those melodramatic ads against Question 1, the nurse-patient limits, which featured patients perishing in the hall because nurses had been pulled off to meet requirements in other places. (It failed.)

In another part of the night, I dreamt I forgot my tennis racquet and had to play with something that had a little handle and a brush at the end. I tried to do it but then realized I couldn't possibly hold onto it. The scene cut to a match. My opponent was bouncing around. She looked pretty good. I said I realized I couldn't play with the racquet. Then I realized mine was in the car. She said to go ahead and get it. I said but then I would be late to the match and she said it was OK, we could start and one-all, and she wasn't good for more than one set anyway.

I ran out to get my racquet but then realized my keys were locked in a room. Then I couldn't remember exactly where the room was. Oy.

I was still in transit when I woke up. I guess the good news was that my opponent was being nice about it.

I also wrote a piece about PTSD but it hasn't been published yet. When I did a little research, I found a story that stated many cancer survivors suffer from PTSD.

The National Cancer Institute calls it Post Traumatic Stress, or PTS. Apparently it is not as severe but it can rear its head at any time. Such as in nightmares that go back to the time of crisis.

After that nightmare I woke up feeling blue. I don't know why the saying is "feeling blue." Blue is one of my favorite colors. It should be "feeling gray."

In any case there was nothing much to do about it except to go on with my day.

In Wellfleet, a first trip to the ocean

It was a long drive to and from, but another trip to Wellfleet was well worth it. This time it was with all three kids – yay – and guest of honor Nell at Diane and David's "treehouse" in the woods.

It was Nell's first trip to the "big ocean," as compared to the Long Island Sound, her neighborhood beach.

I remembered how, the first time Joe saw the ocean, he said, "Water too big."

Nell had the advantage of going at low tide and walking right into a tidal pool, a "mini ocean," where other kids were playing. (Thanks David for the heads-up).

I can't find the right word for how it feels to see my baby with his baby. Strange (because wasn't he just that age) and wonderful (because I had said, "I'm never going to see my grandchildren, and now I have two of them.)

There was a lot for her to do. Such as, go to a playground near the beach, eat ice cream and more ice cream, and take a ride in Diane's canoe in the shallow part of Gull Pond, through the reeds.

She wanted me to have a ride also, so I clambered in also after Ben and Diane paddled her around. At first it seemed like I wasn't going to be able to get out from my seated position in the middle. Katie tried to pull, to no avail. So I turned around and stood up like I usually do. Did I feel a little like an old lady? Yes, at that point, but not when I got up at the crack of dawn (my father's words) and drove into town for a coffee and a three-and-a-half-mile run.

We ate a lot of great food, from the dock – Mac's Shack – to the dining room table. The bluefish, probably right off the boat, was so fresh and delicious that even those who don't eat much fish asked for it for a second night. After dinner, we went out on the deck and looked at fireflies.

The idea of getting everyone together was born last summer when Katie and I were leaving Wellfleet. She asked where Ben and Joe were. We knew where they were, but I knew what she meant. It had been a while since the last family vacation. I began to put out feelers.

Being able to look a whole year ahead with as much confidence as the next person, as opposed to having leukemia and being afraid to plan for anything, gave me an idea for a post on the blood cancer platform of Health Union, for which I have been writing.

It would be about how my view of the future changed incrementally. At first and after each relapse, I  would plan for the short term. Getting out of the hospital for Mother's Day, getting out for Ben's high school graduation. When I got to those events, I garnered the courage to plan for other things. Sometimes I planned and it didn't work out. Such as the time I got pneumonia right before I was scheduled to go to California for my cousin Nancy's 60th birthday party. But the world didn't end. I got to see the photos. 

I just thought of something that I don't want to get caught up in.

I planned a trip to Cape May and I relapsed.

I got better and planned a trip to California. And relapsed again.

Joe said to never plan a vacation to any place other than Cape Cod.

So we went to Cape Cod again and all was well.

Does that mean that I can never break the curse?

Of course not!

Right?

Leukemia threatens another life ... on film

Catherine Deneuve plays a woman with leukemia in a new movie

Tonight I heard an interview on NPR with Catherine Deneuve, known as the grande dame of French cinema and considered by many to be one of the most beautiful women in the world. I've followed her career since being transfixed by her performance in 1967's "Belle de Jour."

Now 65 and still beautiful, she plays the "monstrously complex" matriarch of a large, dysfunctional family in the new French movie, "A Christmas Tale." Her character has a rare form of leukemia, which killed her young son and now threatens her own life. It turns out that her black-sheep son is a perfect match for being a bone marrow donor. He says he doesn't love his mother. She says that's fine, because she doesn't love him. Obviously their relationship is complex and they love each other in their own ways.

In the interview, Deneuve discusses the complex relationships in the film and answers a question about how it has been for her to age on film in front of so many people. She replies that it is much easier for women to age gracefully in Europe than in the U.S. It's not a new thought, but still, it's interesting to hear it from her.

As for the film, I don't know how the story plays out, because the NPR story and print interviews don't give it away.

I do know that fatal blood cancers -- most often leukemia -  are "popular" in movies (and novels), including "Sisterhood of the Traveling Pants," "Terms of Endearment," "Love Story," "Dying Young," "Rainmaker" and a long list of others. I'm not sure why this is. Because leukemia and lymphoma sound mysterious, or romantic? Or maybe because they are a way of giving a character cancer without having to say the "C" word? (Although in the movie Deneuve's character presents herself by saying, "I'm the one with cancer.")

One google search for leukemia and movies turned up 48 entries!

I wonder if people have any thoughts about this.