Talking about many things to celebrate

Sitting on a bench at the bay

I once feared I would never see my grandchildren, and now they are 2 and almost 4, an event celebrated at a family cookout last week, followed by a double dose of deliciousness at Diane and David's in Wellfleet this weekend. Nell and Callen are both July babies, hence the family cookout last week.

This weekend we played at the bay (warm enough to swim in) and in tide pools the beach, ate at the dock, enjoyed ice cream that dripped all over us, and, due to the unusual heat, spent more time in the house than we would have otherwise done, but we played board games and talked, and I soaked all that up also, because the "scenery" in Diane's deck garden is beautiful also, and just looking at my grandchildren's beautiful faces was scenery enough. Not to mention, which is what I just did, enjoying two of my own "babies," Ben and Joe, and talking on the phone to Katie.

I thought I would never find my watch, but it miraculously appeared, and I feared I would never get that darn stitch out, but guess what, I did.

Last time I wrote, I sounded so frustrated, and then, sorry to say, I disappeared.

I didn't actually think the stitch would be in my cheek forever, but I wasn't sure how I would get it out. I finally went to the CVS Minute Clinic in Northampton, waited less than five minutes, and a lovely nurse practitioner removed the stitch. The area still doesn’t look great because I’m applying Efudex, the chemotherapy cream to it.

The one that I was worried about, on my wrist, also just needs Efudex, while one at my neck, which seems to have disappeared, is going to need a Mohs surgery.  I thought that because it was darker, it was a melanoma, but the one on my wrist was just more of the same.

With the birthday kids

I was wrong about the misplaced watch, also. I thought that because I couldn’t find my watch, I was losing my mind, a thought process that is the opposite of what Susan Krauss Whitbourne Ph.D., suggested people do in a piece headlined, “Mindlessness andMemory Slips: How to Find What You’ve Lost.”

“Don't jump to conclusions that you're losing your mental abilities,” she writes.

I actually followed the recommended steps.

“Instead of panicking, sit down and think.  Reconstruct the series of steps you followed when you put the item down. Remind yourself of what you were thinking and feeling. Context-dependent memory, in which you put yourself in the same frame of mind, is your best friend right now. You need to reconstruct the entire scenario mentally, walking through it like a crime scene.”

In a New Yorker essay, When Things Go Missing, Kathryn Shultz wrote, "At best, our failure to locate something that we ourselves last handled suggests that our memory is shot; at worst, it calls into question the very nature and continuity of selfhood. (If you’ve ever lost something that you deliberately stashed away for safekeeping, you know that the resulting frustration stems not just from a failure of memory but from a failure of inference. As one astute Internet commentator asked, “Why is it so hard to think like myself?”) Part of what makes loss such a surprisingly complicated phenomenon, then, is that it is inextricable from the extremely complicated phenomenon of human cognition.

This entanglement becomes more fraught as we grow older. Beyond a certain age, every act of losing gets subjected to an extra layer of scrutiny, in case what you have actually lost is your mind. Most such acts don’t indicate pathology, of course, but real mental decline does manifest partly as an uptick in lost things."

She continues, "No wonder losing things, even trivial things, can be so upsetting. Regardless of what goes missing, loss puts us in our place; it confronts us with lack of order and loss of control and the fleeting nature of existence. When Patti Smith gives up on finding her black coat, she imagines that, together with all of the world’s other missing objects, it has gone to dwell in a place her husband liked to call the Valley of Lost Things."

I really think that is where my cherry red watch went. It was one of my favorites. And then it simply disappeared. Either that or someone at the jewelry store absconded with it. When I gave up looking for it, at least I had some closure.

I sensed that the purple watch might have joined it. Either that, or it was at the BF’s house. But he said he looked all over and couldn't find it.

The other day I was lying on his floor doing one of the exercises that my occupational therapist has prescribed for strengthening my rhomboids. Did I say I have now added an occupational therapist to my long list of experts? Probably not. The goal is to loosen up the tendons in my hands and wrists . Graft vs. host disease of the skin has tightened them up to the extent that my left hand won’t open all the way when I try to lay it flat.

The light therapy, ECP, has loosened up my fascia and skin, but not enough in my hands. In yoga positions such as down dog, my left hand looks like a claw, and I’m working towards flattening it out. The rhomboid strengthening is partially because it’s all tied together and also because of the chronic pain around my left shoulder blade.

As I was lying on the floor, I turned my head sideways and saw something purple under the bench. It was my watch. I whooped and hollered for joy!

I was not crazy after all. A wonderful sense of closure floated over me. I have to think about why my default was to blame myself, but, judging from the passages I quoted, that is a common thing to do.

Here’s something I wrote about once being the Queen of Rashes. My skin isn’t so great, and it is really uncomfortable to cover up as much as I do at the beach, but I’m glad that that was then and this is now.

10 years ago, it was downhill all the way

Callen and Nell

I haven't been running that much, but yesterday I decided to see how I did with some hills, back and forth to Brunelles Marina. The early registration email from the Saint Patrick's Race committee got me thinking.

A man walking down the road was going faster than I was running. If I were to do it again and didn't want to finish last, I would have to try to figure out how to get a little faster. First of course I'd have to see how I felt going a longer distance. The neuropathy in my feet is not a big help.

When I checked at home, I saw that I had gone 3.8 miles. Then I drank coffee and walked Maddie, for a total of the 6.2 miles, the same distance as the race. Doing it broken up with coffee in between, and a dog walk at the end, would be the way to go.

I thought about how it's coming up on the 10th anniversary of my second relapse of acute myeloid leukemia. Back home, I looked it up in my handy reference, my own blog.

In hindsight I know what was happening. Looking back, I can still feel the grip of uncertainty and panic. Here are some excerpts. Maybe you want more, maybe you don't. If you want the whole post, you can click on the link. For reference, the CMV to which I refer is Cytomegalovirus. It is not dangerous to most people, but it is to people with compromised immune systems like I had.

Dec. 12, 2008, Transfusions and rashes and shakes. I survived the long day at the clinic, but it wasn’t easy. My white count was down to .9 (normal is 3.8-9.2) and my hematocrit was down to 21 (normal is 34.8-43.6). I wondered how I had been able to walk the dog nearly two miles the day before. I guess I was running on reserve power. I needed a platelet transfusion in addition to needing blood; I figured if my platelets were that low, I didn’t really need to know the number, because it would only spook me. This being the third downward spiral after a combination of CMV and Valcyte, the drug used to treat it, they switched me from the Valcyte to a different drug, Valtrex, which looks like a horse pill and needs to be taken four times a day. They said this drug should hold down the CMV but not mess up my counts.

Dec. 16, 2008, Spending some uneasy time in limbo. My counts were still low yesterday: WBC was 1, hematocrit was 24, and platelets were down at the “don’t ask, don’t tell level.” I know I could ask, but for some reason I get especially rattled by low platelet levels. I got platelet and blood transfusions, with 50 mg. of Benadryl and a steroid to stave off a platelet reaction, and ended up staying the night at Diane and David’s, this time being rescued by David because Diane was out of town. It also appears that on top of the already low white count, I may have a virus that is further suppressing my counts. I've had an on-and-off low-grade fever, but I feel OK. Yesterday they sent out some blood samples. So the primary suspect is the CMV, the Valcyte and now a new virus, and when the virus goes away my counts should come back.

Dec. 18, 2008, Biopsied, transfused, and still wondering. The counts were not better today, unless you consider the hematocrit, which was 25 after Monday’s transfusion. This was still below normal but high enough to avoid a transfusion. My white count was .6, which is quite low. I knew my platelets were very low, due to the red pinpoint dots (Petechiae) that were making my legs resemble a pointillist painting. As I’ve said, I really have no interest in knowing my numbers when my platelets are extremely low. Today I found out by accident. I went into the infusion room in search of the lunch cart, and I bumped into my nurse from the other day. I told her that my blood counts weren’t back yet, but that I thought my platelets were still low. “Well, they were only 2 the other day, so I’ll just get the order going,” she said. Two? When they were 164 (normal is 155-410) just a few weeks ago? The chimerism from recent blood work, showing the percentage of donor, is still not back. After I got my platelets today, Melissa did a bone marrow biopsy, which will provide a clearer picture.

Dec. 25, 2008: Downhill all the way. It’s been a terrible week. I felt really sick all weekend, and when I called Dr. Alyea Sunday, he said to go to the Brigham and Women’ emergency room in Boston, from where I would get admitted. He also said he was sorry to tell me on the phone, but the pathology report on the bone marrow biopsy report showed that I had relapsed. I had to get to the hospital in a snowstorm, so I didn’t have time to digest it. I still haven’t digested it. 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. I guess this is my mind’s way of going through the mourning process; I hope to get to the acceptance phase soon. I wandered over to 6A (my home for the last transplant) from 6C (where I am now). Myra, a wise, funny nurse, who's been doing transplants for ages, knew what had happened. “Well, you have 48 hours to have your pity party, then you have to quit it and put on your fighting gloves,” she said.

I had my pity party, and then I put on my boxing gloves.

Through luck, an amazing team at the Dana-Farber Cancer Institute, the strong stem cells of my donor, a little stubbornness on my part, absence of the challenging FLT3 mutation, and a lot of help from my friends and family, I did get to see my children grow into wonderful young adults and I did get to see those adorable grandchildren.

It's hard to believe that it's 10 years after those challenging days.