Saturday, February 29, 2020

California dreamin' (Part Two)

With Katie and Nancy on top of Coit Tower
You don’t want to use the word iconic lightly. I think though that it’s safe to use it for three places we went in the San Francisco area.

1: Golden Gate Bridge (needs no explanation.)
2: Muir Woods, the National Monument that is a redwood sanctuary with coast redwoods more than 250 feet high and 400 to 800 years old. The East Bay Times summarizes: “ The National Park Service preserves “that singular icon of Northern California, the coast redwood.”
3. Coit Tower, a top of Telegraph Hill. (Just to make sure I wasn’t exaggerating, I looked it up and read, “Coit Tower is an iconic site on the San Francisco skyline.”

Nancy planned a whole itinerary, starting with my arrival on last Thursday, to which we adhered pretty closely except for substituting more time outside instead of the Legion of Honor Museum. I had been to Coit Tower, but this was an exceptionally interesting visit because she booked a private tour, in which our guide explained the history behind the Depression-era murals.

Atop Coit Tower
A sign at the tower explains, “In early 1934, the building became the pilot project of the Public Works of Art Project (PWAP), and offshoot of the Civil Works Administration, one of the ‘alphabet soup’ of federal agencies that put people to work during the Depression. (Our guide said it owes a lot to Eleanor Roosevelt.)
…Many of the most important Bay Area artists of the time were hired to create the artwork. The twenty-six project artists worked together to support the unified theme of ‘Aspects of Life in California, 1934′, depicting scenes of agriculture, education, urban and rural life, and New Deal idealism. 

One of my favorites: life in a newspaper office.

Afterwards, we had lunch at the Saint Francis Yacht Club, where Nancy is a member, and walked along the beach towards the Golden Gate Bridge. It didn’t look real, but it was. I don’t know how many times I should say beautiful, but that’s what it is. It was sunny and in the 60s, a balm to East Coasters who had gone West out of the cold.

Lunch in the trees

Our Airbnb was in the town of Tiburon. I got in a jog of two and a half miles, part of it along the water, and met Nancy for coffee. We had a view of the water. I took a video of the ferry coming in. I could do all of that some more.

After checking out of the Airbnb, on the last day, we drove up into the mountains.

Tree hugger
We had lunch on the deck of the Mountain Home Inn, along the Mt. Tamalpais ridgeline, which felt like we were floating in the trees. Then it was on to Muir Woods, and then on to get a snack at the Parkside Café before a sunset walk along Stinson Beach. We found so many perfect sand dollars that my traveling companion wondered if they were real!

The joy of being there was compounded by watching little Goldie’s joy in everything. I treasured watching her and Katie play along the shoreline. Serena is doing such a good job with her. I got a kick out of how she kept calling us Cousin Ronni and Cousin Katie. Little baby Leo is of course cute too of course and seems to be always smiling.

Little cutie
Then it was on to the airport for Katie’s 8:43 p.m. flight and my flight at 10:10 p.m.

It’s hard to believe we squeezed so much into a few days, but we got it all in.

I arrived in Boston at 4 a.m./7 a.m… and was exhausted.

Driving home, I had to stop twice. It took days to get over it. I might not take the Red Eye again. I only slept a little. But if we hadn’t taken it, then we would have missed the magical day we had on Monday. The better way might have been to do what we did last year when we went to Jeremy and Karma’s wedding, leaving around 2 p.m.

Stinson Beach
As I write this a few days later I have finally recovered. I’m sad about it being over and concerned that somehow I got exposed to the Coronavirus. I asked my pharmacist if being on one milligram of prednisone counts as being immunosuppressed, and he said no. For good measure, I asked my nurse practitioner, Melissa, and she said the same. She said she was glad I went to California.

I think that to keep my mind off of it, I’m going to make a photo book. That way I can immerse myself in the love, and the wonder of it all, and look at the smiling faces and try not to get swallowed up in the hysteria. I talked to a friend about the worry and she said it doesn’t do any good to look back. It does good when looking back at the good part but not when second guessing. I have a tickle in my throat and am trying not to go overboard with it. My imagination helps in my writing but not when I apply it to myself and my symptoms. 

Saturday, February 22, 2020

California dreamin' (Part One)

View from hill walk near cousin's house in East Bay area

Chaska and Jason
I wanted to do something with Katie, and although she only had a short time, we decided to go to California. Because, why not? There are actually good reasons, which include seeing cousins and going to a special performance by Raining Jane and Jason Mraz in Santa Rosa. The concert was a makeup after a cancellation in October, due to the fires and fear for patron safety.

Of course, because I am who I am, meaning a complicated case, I worried about flying, due to flu and colds in general and Coronoavirus in particular. My pharmacist said, “Don’t go.” Then he said to go but to wear a heavy-duty mask, the kind they use for compounding, so he gave me one. My nurse at ECP, at Dana-Farber, said to wear one of the more thin masks. I took both.

With Katie and Chaska
I looked up whether to wear a mask while traveling, and the answer that I found was no. On the plane from Boston, I put on the heavy-duty one and couldn’t breathe. I called my friend Margaret while I was waiting for takeoff. “Put on the mask,” she said. (The reason for the concern is that prednisone is an immune system suppressant. ) Then the flight attendant said that she heard the only people who need to wear them are sick people, so as not to spread germs. The mask-wearing didn’t last long.

Family brunch
I was at a window seat, and my main problem was the guy on the aisle, who said, “Jesus Christ” when I got up to go to the bathroom. I told the flight attendant. She said then he shouldn’t have gotten the aisle seat. And she said I should go four times. I went three. Good for them to keep serving water. But duh, then you have to pee. I thought of saying something but didn’t.

The same day, Thursday, I had a beautiful day with my cousin Nancy. We went straight to a restaurant called Fish, in Sausalito, on the water. Then we wandered around Mill Valley, where she lives, and went to a yoga class. I spent the night at my cousin Wendy’s house in El Cerrito. In the morning we took a hill walk with a beautiful view. It’s crazy how it is part spring, part summer here. Part of it is due to climate change and part of it is just the way it usually is.

Cuteness in the park (Katie and Goldie)
Last night was the concert, preceded by dinner at an Italian restaurant in Santa Rosa, longtime residence of Peanuts creator Charles Schultz. At first I didn’t know what my cousin Nancy was talking about when she said she had parked near Woodstock. Then when I got there I saw that it was a statue of the yellow bird from Peanuts. The concert was fabulous. It is something else to be related to a rock star who is gorgeous inside and out. I love all the band members, each complementing the other.

Serena and Goldie
Today we had a family brunch hosted by Wendy and Mark, followed by a walk in the park. Katie, Goldie and I did yoga on the grass. It was great to catch up with the older cousins and play with the little ones. The group photo, with Jeremy in the back, holding Goldie, reminded me of the one at Atlantic Beach. In it, Bob stood in the back holding Katie, who was just a baby. Now she is my playmate and friend, and I am so happy to be spending time with her in this beautiful place. I feel land-locked where I live, though I am lucky to be relatively close to the water. Still, all my senses and soul drank in the water when afterwards we walked alongside the water in and around Tiburon, where we are staying at an Airbnb.

The view from our Airbnb and the area around it is spectacular. We walked along the water and took it all in. More adventures to come.

Thursday, February 13, 2020

Stitch fix: zero. Shu-fix: one

The DIY didn’t go as planned with the stitches.

DIY tools
Turned out they were tight and tiny and in a running line so my friend couldn’t do it yesterday.  She said I should probably lie down when they come out. I couldn’t lie down on the kitchen floor, and anyway, it was more of a production than I thought. I usually only ask her if it’s a small job. If it’s more, then I go to the doctor. I’m a little surprised that they didn’t mention anything about the stitches at the Mohs center when they sent me out with the tweezers and scissors. The doctor at my local internist's isn't available, so I will see the nurse practitioner. I hope she don’t kick the can down the road, because the next place it would land would be…

Shu-Fix, 113 Hawley St., Northampton
…the Dana-Farber Cancer Institute. I will be there tomorrow for the light therapy on my blood. I’ll have a nurse for the three hours that I’m there. At the internist’s office, the secretary said she thought one of the nurses where I was going would probably do it. I thought probably not because they’re doing other things when I’m there at the Kraft Family Blood Donor Center. Also not their job. In any case I asked, and the answer was no.

Good-as-new clog
Today I picked up three pairs of shoes that I had dropped off at Shu-Fix, in Northampton. Many years ago, back at the paper, I wrote a story about how shoe repair shops still existed despite the throwaway culture. There were still some, not that many. Now of course there are fewer still. I had tried cleaning two of the pairs up but hadn’t done a good job. The other pair – black clogs that I wear around the house – I thought were beyond hope. But I brought them in anyway. They turned out to look like a new pair of shoes. I thought they were grayish but really they were just dirty!

The twenty-five dollars for all three was well spent. The smile it gave me counteracted the annoyance generated by the stitch problem.

This interesting story about Northampton's "sole man" explains how he learned his trade in Portugal and why he is a local fixture. I would actually call him a treasure.

Sunday, February 9, 2020

It's about the dermatology, stupid

Biopsied thumb
Not too long ago, I had two dermatologists, but now I seem to have accumulated two more, some of them giving me conflicting information. This has left me farblonjet, not knowing which way to turn.

They are Dr. Lin, my primary dermatologist; Dr. Liu, the one who sees me for graft vs. host disease of the skin; Dr. Cornejo, who I saw when I was worried about a spot and couldn’t get in to see the other two; and Dr. Schmults, the Mohs surgeon.

Dr. Cornejo told me after three biopsy results that I needed Mohs surgery on all three. But when I went for the Mohs on Tuesday, Dr. Schmults said she only needed to do one; she told me to apply a topical chemotherapy combination to the other two spots, one on my cheekbone and the other on the top of my neck, at my hairline.

Meanwhile, when I saw Dr. Lin on Jan. 28th, she said that she thought my face would benefit from a return to the face fry, or more formally, PDT, photo dynamic therapy, which I thought was a thing of the past. Her scheduler called me up to book it. But before I had a chance to return that call, I saw Dr. Schmults, who said to apply the chemo cream to my face and don’t do the PDT. I think Dr. Schmults, the surgeon, wins out on this one. I hope I am right because I would rather have the cream than the burning light. I think I will have to call Dr. Lin’s office to get this straightened out.

I had back-to-back weeks of dermatology appointments.

For the one on Jan. 28th, I had neglected to get the PT1 for the address where I was going. That is the form that needs to be filled out for my MassHealth transportation, aka, the crazy driver pool. The address, 221 Longwood, Boston, is very close to Dana-Farber, for which I do have the PT1. I figured I would get the ride to Dana-Farber and walk.

In a book I am reading, the narrator calls her partner The Boyfriend. I am going to try it on but probably only use it once because in the book, Maybe You Should Talk to Someone, things have not gone well with The Boyfriend, and I don’t want to jinx myself. In any case, The Boyfriend would have taken me but he was already taking me the next week for the Mohs. Also I knew it wasn’t a good day for him, and I didn't want him to spend it in a dermatologist's office.

Not knowing how long the visit would take, for a 2:45 appointment, I told the driver to get me at 4:30 for the ride home. Because I don’t trust my sense of direction, when I got to Dana-Farber at 2:15, I put the address in my phone. It was raining. At some point when I was heading down Longwood, I realized I had done it again. “It” being that I was heading for 221 Longwood in Brookline, not Boston. I don't know how I did that with the phone in my hand.

I had already done this once, on a day that I had driven myself, arriving so late, once I figured it out, for my appointment at the right Longwood that I almost wasn’t seen. (The receptionist started to turn me away that first time but I caught Dr. Lin's eye as she was coming out of a room, and she had pity on me when she saw a tear in my eye.)

For the Jan. 28th visit, I reversed course and ran through the rain. I was 15 minutes late. For an office that often makes me wait at least an hour, that didn’t seem bad. A guy at the desk said it would be OK. Apparently it wasn’t. After I waited almost an hour, I asked what gave. A different person said that since I was late, I would have to wait until 5:30. I explained about the ride, bla bla bla, and they fit me in…around 5. The driver kept calling. Then his dispatcher called. I said I couldn’t help it and I hoped he wouldn’t leave without me. It was my first time back with the driver of the car in the car crash. The company kind of owed it to me to get me home safely.

This is the appointment where Dr. Lin said that I should get the face fry again. Not only that, but she wanted to use a stronger red light, not a blue light. Among the activities were a biopsy on a tiny hole on the knuckle of my thumb. The hole has been there so long I lost track.

The resident, or maybe it was fellow, did the biopsy. The biopsy itself didn’t hurt, but the needle in my thumb killed. There were a few extra people in the room. I don’t remember who did what. But one of them zapped some precancerous spots. (Zapped = performed cryosurgery.) She did such a “hard freeze” on my ring finger that the blister looked like the Astrodome. It hasn’t healed, and I am worried that it might be infected. I got another one on my cheek and several on my chest.

While the resident (or fellow) jabbed me with the anesthesia, Dr. Lin rubbed my back. She is a sweetie. We go way back, far enough to have discussed many things. “How’s the guy?” she asked. “Good,” I said.

“The guy” drove me on Tuesday for the Mohs, which, as I said, turned out to be a single and not a triple. It is in a strange place, at the edge of the top of my cheekbone, bordering my ear. I have had a hard time keeping the band aid on for a week. I have to change it every night, and it is not easy to cut a piece of gauze into the right shape and tape it on so it doesn’t fall off. One morning it had dislodged while I was sleeping, so I had to put it on all over again. I had a few choice words.

Inside my room
Luckily I don’t have to go back to Boston to get the stitches out. When I told someone that they sent me home with a suture removal kit, the person asked if it was a DIY project. No it isn’t. A nurse friend does it for me when there aren’t too many stitches. When there are more, I go to my internist. My nurse friend will be taking them out for me on Tuesday.

While I was at Dr. Schmults’s office, they read the biopsy report on the thumb. It is another squamous cell carcinoma, albeit a tiny one, and I have instructions to treat it when I do both hands, starting next month.

My house is coming along, post tree-fall. They have re-shingled the garage roof and begun taking down damaged parts of the kitchen and bedroom. I'm getting used to the little cubby hole in which I'm sleeping. (It was a kids' room that I never got around to fixing up. Procrastination pays.) It took me a while to stop being disoriented when I woke up.

In other news, here's something I wrote about scars being a roadmap of where we've been. Thanks to my cousin Bob for that one.

Sunday, February 2, 2020

Thoughts on being a (sort of) eleven year old

Toasting my donor 
We tend to like the number one, because it is the first of something, and after that, we like round numbers. We celebrate the fifth anniversary of something or the 10th. At the paper, if someone sent in a press release about the “first annual” such and such, it was one of my pet peeves. I would change it to the first, because how did they know if it was annual yet?

The first anniversary of my stem cell transplant (s) was big. My first re-birthday. I did it twice. (For the other two out of four transplants, I didn’t make it past six months.) I had made it a year! Most restrictions were lifted. I could go places, eat strawberries, sit inside a restaurant. 

Even though two isn’t the round number favored in journalism circles, it’s a big one in stem cell transplant world. It’s when the cancer is unlikely to return. I didn’t make a big deal out of two years, not wanting to jinx myself. I did it twice. I think I might have had coffee with friends. 

Five years was the big deal. It was when I could say I was cured. (Though I never would actually say it myself.) My words: “They say I’m cured.” Doctors don't always say it this way, preferring to maybe cover their bases with “You’re no more likely to get leukemia than the rest of the population. "All the kids were around. We went out to Mulino’s, a favorite restaurant in Northampton, for a celebration complete with birthday cake and the number five. The waitress sang along. Maybe she wondered about the number five, maybe she didn’t even notice. 

A photo popped up on Facebook last month of my seventh “re-birthday,” showing my memory from four years ago of having a cake with Ben and Joe. I assume Katie was in Minnesota. I think we’ve done something on or around the date every year. 

Seventh re-birthday with Ben and Joe
Ten years was obviously super big. I don’t remember what we did, but we did something. Eleven, well, what can I say? It kind of slipped through the cracks.

A few weeks ago I thought about the approach of the 11th one. The date: January 30th. For a while we thought it was the 31st, but Denise, my donor, set the record straight. She should know. We were all in a fog, so being off by a day is understandable. 

Then came the date, Jan. 30th, 2020. My 11th re-birthday. I got an email from Denise, with the subject line, Happy Re-birthday, and reading, “I can’t believe it’s been 11 years.  Here’s to many more!” 

It was strange to not have a plan. 

But wait, I did have a plan, just not a plan with the kids.

My friend Diane and I had a coffee date at Barnes and Noble. That’s where we frequently meet. We sat next to each other at my first job at a daily newspaper, at the Transcript-Telegram, aka the T-T, in Holyoke, and then again at the Union-News/Sunday Republican, which morphed into The Republican. We are sisters of the newspaper world. So in a way I was seeing a relative.

Our birthdays are close to each other, mine in August and hers in September. We had already bought each other our birthday coffee. But when we went up to get our coffee, I said to the barista, “It’s my birthday!”

I wasn’t fishing for a free coffee. I just felt like saying it.

Diane said she already bought me my birthday coffee. I explained that it was my stem cell birthday.

“Well, that’s better,” she said. She got me my “re-birthday” coffee. I bought my own chocolate chip cookie.

She had already left when I realized it would be nice to get a photo. A bookstore staffer said she would be happy to do it. I mentioned the occasion and she said she was on the (bone marrow donor) registry but hadn’t been asked to donate. I thanked her and said you never know when a match might come up. 

I took a deep dive and read my post from Jan. 31, 2009, headlined, “New stem cells signed, sealed, delivered.” I can still picture the wild ride I had in the little room. After I got the cells, I reacted, like so: “I started shaking vigorously, and my heart rate went up. Helen gave me 25 mg. of Demerol, which didn’t stop the shakes. She paged a doctor who came in quickly. I got another dose of Demerol, more Benadryl, hydrocortisone and some Tylenol. Also they put me on oxygen.”

The night before, when I had gotten anxious, I wrote that Diane reminded me,“ You’re getting another shot at a whole new life. It’s great. It’s the miracle of modern science.” 

And she was right.

Last week when I told someone about the occasion, I said, "I'm 11 years old and a walking side effect!"

A couple of things to note.

1. I'm walking, which is more than I could say for a couple of months in bed, in the hospital, after that transplant.
2. After everything I've been through, the four stem cell transplants, the graft vs. host disease, the neuropathy, the 13 teeth lost, and the skin cancer that is partially a result of the treatment, I still have my sense of humor. Actually my sense of humor may even be better, because I need it.