Red Dots

With the Vixen

Red dots... is not a medical situation.. but some paintings that have sold in advance of my show opening next Friday.

But first about my consult with the Vix on Monday. I got to the hospital for 6:30am blood draw and saw her at 7:30. She always has wet hair in the morning which I find so endearing. She said my white blood count was a little low and another measure (leucocyte?) was low too but good enough to do another cycle. She was pleased that I had no other side effects other than the fatigue which set in towards the last few days and cleared up a few days after I stopped. She had a 5th year Italian woman resident with her. The resident is doing a research project to study long-term survivors like me. I mentioned this blog and she was very interested. The Vix said she read it once long ago. She Vix told the resident that I'm way ahead of the curve on developing survivorship skills. And that writing is highly associated with good outcomes. Interesting!

So I started dosing again yesterday. She says that the side effects that are accumulative are hand/foot syndrome and diarrhea. So far so good.

Back to the red dots... which is a little sticker that galleries put on work that is already sold. My brother John and his wife Andrea are buying a pair! Before the show opens! So exciting. I'll post those images next time.

I have been focused on prepping for the show and have not been in the studio in 2 weeks. But over the weekend we were in Vermont and at a cafe in Montpelier, I saw some paintings that were inspiring. So I'm getting the urge to get back to work more. I felt pretty burned out for a while but the urge is back. The muse is back.

Love Is Calling

ICA, Boston

I'm up early to get to hospital for 6:30 blood draw, see The Vix at 7:30, then get Zumeta infusion at 7:30. And bike to work to be at team meeting by 11. How's your morning?

This is the first round so not entirely sure what to expect other than for to Vix fly-by to say your blood work looks fine, the soles of your hands and feet are not inflamed and you can get out of bed. The exhaustion isn't that bad. And it's not. I tanked around day 10-14 but felt my energy return after a few days of the meds. That's what I anticipate. But you never know....

On Friday my sister drove up for a Boston day trip with the younger two kids, Luke (16) and Zoey (14). Luke towers over us! And Zoey is my height if not a little taller. We had a love fest. We went to see the quirky-as-usual ICA on public transportation. I remember taking Luke for his first T ride when he was about 2 years old and he was as interested now as he was then. He loves everything mechanical and what-makes-it-go.

We meandered through the North End for pizza and cannolis.

Zoey is teaching herself guitar and she loved playing my Martin D18. She is working on a song called "Like Gold" that Luke sings with her. Amy and I saw and listened to them in tears. They were workshopping it, putting it together phrase by phrase. Really beautiful to watch them.

The evening culminated at the VFW where we went to listen to jazz. Neither of them had heard live jazz - or maybe jazz at all. Zoey sat with her eyes closed. She was focused on the jazz guitar.

My sister texted the next day to say thanks for the best ay of her life.

LOVE IS CALLING.

The Chaise

Just noticed that this photo includes a vintage joint holder that my brother gave me about a year ago. We smoked about half of one over several attempts and decided it's not for us. If you haven't smoked in decades, you will be astounded by the strength of it. And my brother said it was a light one! Good god! So my brother will get his beloved holder back. And I will never again wonder if marijuana would be helpful to me.

Today is day 14 of the medication and it's kicking my ass with fatigue. I take my last dose tonight, then none for a week. A week from today I'll see the Vix again to see check labs. This post is entitled "the chaise" because that's where I spent much of the weekend. It's a joke between us, how little I sit down. Glenn says it's "great" that I'm on this medication because it not only forces me to rest, it gives him a break too.

We bought a new couch recently and decided to go with a chaise on one end. When we bought it, I thought, oh god, who uses those? Just lazy asses! (sorry if you love your chaise as much as I now love mine.) Now it's my favorite perch in the house. I had to take a nap on Saturday afternoon (we did have a big night out at an invite-only club in an old factory in Watertown, CT. That's a whole story in itself.) We got out for some hike with Sasha and saw some friends, but it was pretty low key.

Who knows how this will go. If I'm drained like this in the future, it will be a problem for me. I'm not signing up for treatment if it heavily impacts quality of life. Resting on the couch is not my idea of high quality living. While I'm relieved that nothing else terrible is happening, I resent the energy drain. Eager to see how I feel once I'm off it a few days.

FMLA

20" x 16"

I'm tired. Bone tired.
I've taken about 10 days of medication. I'm grateful that nothing else has happened, but I do feel the fatigue. The cycle is 2 weeks on, 1 week off. I'll go back to The Vix a week from Monday to check my levels (not exactly sure what she's measuring but it's white blood cells, and god knows what else.)

I have worked for Cambridge Health Alliance for 21 years. You'd think I could get on intermittent medical leave, right? But I don't qualify for FMLA because I won't work enough hours. And they don't offer intermittent non-FMLA. I have been struggling with the HR department all week and it's not in my favor. Makes me angry. The offer is that I put in paperwork for Americans With Disabilities and perhaps they grant me an "accommodation". I don't need an accommodation, I'm not disabled. So insulting. Pissed me off. Even if I went that route, I'd still have to work extra hours to make up for my time off (or I run out of vacation time). I called the Union Rep - she said the best option is to not involve HR but to work it out within my department.

I think my best option is to cut down my hours. But I'll see how it goes after 1 full cycle. It's kicking my ass. I'm no hero. I'm OK with that.

Yesterday I finished my 16th painting for my show that opens March 6. It's still untitled. The show is called "Plus One" and I am showing 8 pairs of encaustic paintings. I don't typically work in blues and greens but this whole body of work is blues and greens. I feel really good about it. I have been working intensely. I just have to finish wiring, varnishing the edges of the frames, that kind of thing.

My beloved aunt Marty and (unbeloved) Uncle Jay moved into assisted living this week. It's about 30 minutes away and kind of on the way to Connecticut. I am very happy about this in a way although it's bittersweet. She was so burnt out taking care of him, managing the staff and the big house. I think she's relieved. He's in the nursing care section and she's living in a Residence Inn kind of place until she can move into her independent apartment. I plan to see her weekly now. I wish her more ease. She will be 91 in May. Bless her.

Hair

So far, so good! I've taken the Capecetabine for a full week. No side effects. At least not yet. I didn't ask what the typical reaction time is. I'm so suggestible that it's better not to ask. Allergic reactions show up in the first few days, typically. This is intended as a LONG term treatment so I'm really hoping to tolerate it for the long haul.

I took Letrozole for 2.5 years and one of the side effects is hair thinning. I hate to admit that I have noticed some thinning. My mother's sister Aunt Jean had such thinning that she wore a wig in her later years. I always feared that would happen to me, too. And one of the side effects of Capecetaine is also potential hair thinning. If it gets noticeable I'll just go the Buddhist nun look. The things I worry about! I've never tattooed but if I end up shaving my head, I'll also tattoo BADASS on my right forearm. That's my plan B.

But hopefully my hair will stay relatively thick. I did get it cut a few days ago and had the impulse to go jet black, like my mother. Glenn was with me and said, "go ahead if that's what you want to do". What a guy!

Heart Tree

Brewster, Massachusetts

I took this photo last week in Brewster. My sister lives next to conservation land and we all (Zoey, my sister and I) loved these heart-shaped lichens on the dead tree. My sister is especially fond of everything heart-shaped. It's a common motif on her pottery.

Not much to report - a very good thing indeed. The first night I took the medication I felt a sudden and intense wave of exhaustion that flattened me for about an hour. I think I already mentioned it. Anyway, I am learning quickly that I really need to eat and drink when I take the pills. And I love doing both!

I've been keeping things as normal as possible which means staying very busy. I have not missed any work, even on the consultation days. Just put on the bike helmet and barrel across town and work. Since I feel totally normal, I kind of forget about it for the most part.

Yesterday I saw 8 people at my private practice.  One of them is a recent social work graduate and a new therapist. Her life story is eerily similar to mine. She lost both parents when she was a teenager, within months of each other. One died from cancer. Yesterday out of the blue she said that she'd been worried about me lately. I was so taken aback that I didn't even ask about it. I just let it go. Typically I'd ask about that kind of comment. I've been rather transparent about it, like on my Pan Mass Challenge page which is easily found. Being a millennial she googled me and knew from the beginning about the cancer. If things go south I will have to tell my patients but so far it's not impacted my work (other than avoiding that topic with her!).

I worked until 8pm, then went to Judy's to play bluegrass. We always drink, laugh, stay up late. She lives around the corner. And during my mid-day break yesterday I painted. I'm grateful. No pain, no side effects, I do what I want. Total freedom. May it continue this way.

Love from all corners

My sister sent me this a few days ago. It's a story written by Zoey in September 2012. She was 6 years old, describing Sasha and a memory of chasing us down the driveway. (I know, not the safest game to play with little kids. Driving off in my Jeep with them chasing behind.) It made me laugh and cry at the same time. I'd never seen this before. From the moment Zoey was born, from the first time I held her, I felt something very special about her. She quivered energetically in my arms, the life force was so strong. It was one of the most powerful experiences in my life. And that inexplicable connection has always there.

Hospital policy does not allow staff to accept patient gifts. I pretty much follow that rule, like I follow most rules. Over the last week, I have received so many! Our patients are mostly poor and uneducated, mostly immigrants. The first gift was Pulitzer Prize Finalist, National Book Award Winner, "The Noonday Demon: an Atlas of Depression". This from a Brazilian woman who takes a bus to her appointments from Woburn (a huge trip on a bus). We speak in Portuguese. How in the world did she know about this book and have the money to buy it? she pays her rent in small increments as she can. The second gift was a silver bracelet from a Portuguese woman who is going to court next week for assault and battery on a police officer and carrying a dangerous weapon. Such a beautiful bracelet! The third was several big bags of hand warmers, the kind you open for single use. She is a townie from Charlestown and knew Whitey Bulger as a teen. She knows I bike and was worried about the recent cold snap. Wanted me to be warm. And finally, last night I was working late and a Brazilian woman brought in a warm cochinha, a delicious Brazilian snack. I was starving so ate it right in front of her. She loved that I did that, it reminded her of sharing food with family when her grandmother was alive. Coincidence? None of them know anything about what's happening. God works in mysterious ways.

So Day 1 behind me. I got a call from the Dana Farber Pharmacist yesterday afternoon to discuss the medication. Scared me to death. I read most of the information sheet before biking off to work yesterday morning. I say I read most of it because it freaks me out. Then I got the call and we went over it in full. The person said that I should wash my hands before and after taking it and that no one else should touch it. Toxicity?

Throughout the day I felt totally fine but last night I was out walking Sasha with a friend and felt this wave of exhaustion. I wasn't sure I could get home. Amy noticed. It suddenly became hard to form the words, to think, to walk. I felt dizzy and weak Got home and ate more and drank more water and stabilized. The pharmacist said to take with food. OK, got it

Initially I was saying "baby chemo" or "chemo light". No. This is the real deal. Shit.

New Skin, Old Wine

The Vixen

Not sure what that really means - "new skin, old wine". I guess I could change it to "old skin, new wine". Biblical? What's the best analogy?

In any case, I'm starting chemo. My first dose will happen in one hour. My 3 sizable Silly Putty-pink pills. Followed by 3 more tonight. For 2 weeks, then off for 1 week. For 4+ years, god willing.

We saw The Vixen yesterday. She is amazing. After 11.5 years, we understand each other really well. She knows how to work with me. She's flexible. Compassionate. And wants every aspect of treatment and our relationship to work. We are both all in. I'm on board. Glenn is on board. Here we go. Next chapter.

In this pic I'm wearing a handmade shawl that my aunt Karen from the Iowa made. I've known her all my life. It arrived Sunday and it's so perfect. She said she chose the color because I always loved the trees and forest. The Vixen loved it, too. I might ask my aunt to make one for her, too. But only if she'd let me pay her.

Trying to think of something ceremonial to do at 7am on a Tuesday morning. Nothing is coming to me except to take Sasha for her morning walk and meet up with Robin who is also out with Louis. And in a profound way, that's the lesson. It's just daily life, after all. Moment by moment. Trying to be present, to embody the Now with gratitude. That's it.

When I was young, I was always waiting for everything to be "good". For everything to line up so I could be happy. And I was not happy but always frustrated, wondering when it would be "good" and how I could "make" that happen. Maybe it's age. Maybe it's the silver lining of having cancer. What I'm continuing to learn is THIS IS IT! You make your lunch, put on coffee. Feed the dog. Bike to work. Work a long day. Bike home. Walk the dog again. Play the guitar. Read a few minutes in bed. That's my life. Nothing glamorous. But I'm grateful for it. Very grateful.

As my biking partner Gayle always said, "Lola, it's all head." As we trained for century rides in the hilltowns of western Massachusetts. Long miles. Long hills. Don't look up. Don't think. Let your body do it. Just commit and keep going. That's what I'm going to do now. Let my body accept these healing magic pills and remain positive.