Chiddies

Chiddies is Glenn's mom's nickname. Her proper name is Ellen. But I've always called her Chiddies. I first met her at Christmas break in 1979 when I was a freshman in college. Glenn and I spent our first Christmas together in her house in Huntington, Long Island. Chiddies is a contraction - a combination of "children" and "kids". One time, long before my time, she called to gather her kids and visiting friends and said, "chiddies". The nickname stuck. To this day. She is now 86. And dying. Glenn drove up to Vermont to sit vigil with her and his sister. She could pass at any minute. I'll drive up today with the dogsto join them. Her impact has lasted a lifetime. She was a social worker, a psychotherapist. She was the first person I ever met who seemed interested in how I was - REALLY. By that time - age 18 - our unfolding family tragedy was epic. I didn't even recognize the extent of the damage. I was a walking shell. Just barely functioning. I suffered in silence. I never really said anything about my inner world. I just talked fast, smiled and laughed, partied, and explained myself in an off-hand manner and everyone would say how "strong" I was. Not so. Not by any measure. I was really damaged and broken. She was the first person who did not accept my story as told, but began to ask. And with her, my facade began to crumble. As time went on, she'd say, your mother is alive but you don't talk to her? Why not? She encouraged me to contact my mother who I hadn't seen since age 10. Other than my father's funeral when I was 14. When I saw her, I literally tried to hide under a table. That's another story for another time. So with Chiddkes encouraement, I wrote a letter to my mom. She (of course) wrote right back. And we corresponded for about a year. THen we talked a few times on the phone. We had planned to meet but I lost my courage at the last minute. My mom understood. But she was killed in a car crash just a few days later. So I never saw her again. And yet I've always credited Chiddies with helping us to reconnect. It still gives me comfort to know that we tried. And that we had come to a better place. It still hurts. All of it. But Chiddies was a bridge to what took decades to learn - to connect and open, to grow towards self-compassion and empathy for others. And now she lies dying. She might have passed. It's still very early morning. I've kept my phone on the last few nights. Glenn hasn't called or texted. I hope to get there before her light goes out. She lived what I'd call a good life. Such a loving presence. Who loved to dress up with impeccable hair and nails, to drink proseco and eat Chinese dumplihgs. She always came for the holidays, loaded with gifts, Long Island bagels, meatballs an Danish pastry. She loved fully. And she will always be loved by those whose lives she touched. Her therapy patients, her friends and her family. Wishing you peace, dear Chiddies.

Delta Momma Blues

It's been a while since my last post. Life these days has a strange and unnerving sameness. Day Day Day I am in my 16th cycle of chemo. 48 weeks. So far so good. The skin on the soles of my feet and hands is somewhat damaged. The skin cracks in spite of copious amounts of ointments that I use regularly. It can bleed and it's sometimes painful. But manageable. I can be physically active. I just hope I can continue to play guitar - reently the skin on my thumbs split. So I'm using a thumb finger pick. Again so far so good. Plan B would be to pick up another instrument. Patti Smith played a clarinet on one of her albums. Cool enough for me! I'm working A LOT. By choice. Recently Judy and I started zooning on Saturday evenings. It's not ideal for music but we take turns muting ourselves. We drink wine "together" and play. It's been wonderul. I have really missed her. I'll get scans on January 13. I feel that the chemo is really working. May it be so.

Swing Low Sweet Chariot

I've been on the Cape all week and am staying with my aunt. Working from home offers so much flexiiity! I drove down on Monday after installing my show in Boston. I'll drive back up this morning to attend the opening this evening. But what a week it's been - so much good - and so much bad. She is truly an amazing person. 91 years old. As she'd say, she's 91 and a half. Widowed in May, she is making a life for herself. During her 70 years of marriage to the bully, she had no idea about the finanes. Since he died in May, she has totally reclaimed managing all aspects of her life. She hired her own lawyer and the dinnig table where I'm sitting is strewn with her paperork. She combs through her Medicare statements, reads the Wall Street Journal every day. She's got it together. She drives, shops, cooks, does her laundry. She has help to clean the house. But she lives in this big rambling house by herself and loves her independence. The highlight of the week might be the zoom call we did with Jonatha, a professional musician who is a niece on her husband's side. Aunt Marty loves to sing and I had this idea to ask Jonatha if we could zzom with her so she could hear my aunt sing. My aunt chose "Swing Low, Sweet Chariot". I played the guitar, my aunt sang the verses and Jonatha sang the chorus. My aunt was absolutely delighed. Jonatha recorded it and we listened to it later. My aunt could not stop laughing. It was a beauiful momement. The Election still looms over us. Trump is doing his thing. The front page of the New York Times just stated he is lying abut the count and Facebook has banned his "stop the steal" comments. Finally Faceook is taking a stance. The New Yorker recently published an article about Facebook's content rules. It's outrageous what they allow Trump (and other world leaders) to say. The other thing this week is a primary care doc I work closely with was just killed. Hit by a car on her way to vote. In her 40's, mother of 2 young sons. She was loved by patients and staff. It hits me personally as my dad was killed in a motorcycle accident when he was 43. Oh yea - then there's the virus. 100,000 new cases per day in the US. I hold Trump accountable for the majority of those deaths. Dark times.

Looking good, looking real good

I was in the South End of Boston last weekend on a jaunt with Lynn. We've always loved abandoned/edgy city scapes and found this cool set of buildings. Where does that line come from? "looking good, looking real good"? Just popped into my head. This is regarding my consult Monday with NP oncologist. Based on blood work, my white blood cell count was very good, especially given where I was in the chemo cycle. So I"m feeling really encouraged about this oral chemo program. I'm in cycle 13 = 39 weeks. The new NP is wonderful. Carolyn. She said my feet and hands are in pretty good shape. Can you say Bag Balm? Eucerin? I keep them lubed up which is much easier in cool weather as I'm not tempted to stay barefoot. I told her about the insomnia which plagues me from time to time - I attribute it wholly to POTUS. I'm a nervous wreck about US politics. Oh god I pray we vote this monster out. We were in Boston last weekend and I proudly cast my vote in-person at City Hall. That felt so satissying. Otherwise not much to report. I'm ready for my solo show at Galatea Fine Art in Boston which opens Friday November 6. At this point the painting is one, just need to sign, wire, etc. I'm very proud of myself for finishing so much quality work in such a short amount of time. After this, what? It feels impossible to plan. How I yearn to travel again! But all good here on our hill in the woods of Connectcut.

Acadia National Park

I took this picture yesterday at Pretty Marsh, a "secret" spot we found on the west side of Acadia National Park. We've been there 3 times over the last few days. Very few people go (the name isn't particularly inviting unless you love marshes like we do - and the funny thing is - it's not a marsh). This is our annual tradition, 5 years in a row. We rent a very rustic 1940's style cottage on Duck Cove. When I say 1940's style, it's like the original. The real deal. Never been renovated. No attempt to make it fancy. Gorgeous water view where the dogs can swim. It's our 5th year and we have become friends with the owners. They came over for cocktails last night. I continue to feel pretty good on chemo. As Glenn says, we're kind of between dogs. Sasha is now 10 and can't hike much. We've taken her out for 2 hours and she did fine. And Acadia isn't yet 9 months so we can't over-do her, either since her bones are still developing. Which is fine for us. Neithr of us feels up for the massive hikes we've done in the past. We're just feeling grateful that we were ableto take this trip. Just read this morning that POTUS has Covid. "Will you just shut up, man?".

Cycle 11

Just a quick report in on how chemo is going. I just finished Cycle 11 on Tuesday. One cycle = 3 weeks = 2 weeks of 3 pills twice day then one week off. Overall it's going super well. However, around day 12, 13, 14 my well runs dry. I get really tired by the end of the day. By 8pm I'm on the couch, asking Glenn to bring me a plate of food. And like a child, I ask him to count down so I can get the energy to go upstairs, brush my teeth and crash. The other thing that's more or less under control is the skin on the soles of my feet. I have to be pretty careful as I tend to get cracks that really hurt and make it hard to walk. Lots of pumice stone, foot soaks in Epsom salts and heavy use of creams/emolients with socks. I'm a barefoot girl but I also know I don't want to end up lame. Occasional nausea. That's about it. How long? The Vixen says 3-4 years. God knows where we will be by then. (I spend a lot of time in angst about POTUS. What if he's re-elected?) I'm going crazy preparing new work for a show at Galatea Fine Arts in Boston in November. I'm often up ridiculously early to work in my studio. I'm working more than ever. Probably too much. I had a supervisor years ago who said, "always work at the top of your license". I continue at the hospital 3 days a week and then 2 very full days of private practice, all remote. This picture was taken on Saturday night by Maureen who has stayed with us on and off all summer. She arrived from NYC just as we put together this cocktail party. Feeling blessed in spite of cancer/chemo. These days it's like if you have work/money and aren't sick with Covid, all is well. Well enough.

Spinach in your teeth

 Glenn took this pic this morning. He always teases me that I'm dressed up to hike. He will say, " they are all talking about you... look what she's wearing!". It's funny because I rarely run into anyone in the woods. I put on whatever I was wearing the day before... since I work at home, I find myself dressing up just because I like it. No one ever sees me. Other than sometimes the trail maintenance crew of the school. But here I am with my girls, Sasha and Acadia. We don't hike with Sasha anymore because she gets so lame the next day. She's 10 now and favors her back leg. She barks like crazy as we take off but it's best for her. So it's often just me and Acadia. Since there have been a few bear sightings in our yard, we bought bear bells that I take along. I feel like Heidi with her goats. Supposedly the sound warns them off. I'd probably just fall over dead if I saw one up close. 

Another weird title.. spinach in your teeth. What?

Yesterday I had a virtual visit with The Vixen. I had blood drawn last week. I hesitantly mentioned my interaction with the NP who I saw last time, and she agreed that she was not a good hire. She laughed about noting in my chart that I had dirty feet and I was anxious to get my results. She then said, "did she also document that you had spinach in your teeth?". We got a good laugh out of that.

She's magic. We started out the visit with her showing me her new 12 week old female black English lab. So I called my girls over and showed her Sasha and Acadia. Then we got down to business.

Everything is looking really good. Blood work perfect. I'm tolerating the chemo well enough. I get really tired around day 12-14. She says if it gets worse we will adjust the meds. I have a lot of energy so it's more or less OK. I can work and do everything but am totally out of energy by evening on those days.

I won't have to get scanned until January. She's stretching it out to every 6 months. God it's been 12 years now. My diagnosis was given on August 25, 2008. Statistically I should have been dead years ago. 

When I hung up with The Vix, I said how grateful I am to her. And that I loved her. That just kind of popped out of my mouth. But I really do. She has run the long run with me - a few bumps along the way - but I am truly grateful to her.

Compartmentalize

 

Lush August Garden

I didn't know that this blog is searchable! 

Recently I got an email from a woman in South America. She was searching for information to help her sister who also has metastatic breast cancer. She figured out how to contact me and we've been in touch a bit.

I wanted to share what I said to her.

Here it is:

The best advise I can give to you is one word:
compartmentalize.

Not sure how this translates into Spanish.
It's kind of a joke in American culture that men can compartmentalize and women can't. Maybe it's the same in your culture. Men seem to be able to keep things separate in their minds - women are more emotional.

I basically don't think about cancer unless I have to.

Since February I have been taking oral chemo - 3 pills twice a day. For 2 weeks, then 1 week without medication. I set my alarm to take them at 7am and 7pm. When the alarm goes off, I take my pills. But then I forget about it. I don't think of myself as a cancer patient. I think of myself as totally healthy. I know it's not really true but in a way it is true.

The secret is to not identify with cancer.
Cancer is to me. I am not cancer.
I try to have as much fun as I can.
I should not drink alcohol but I do because I like it. We have beautiful cocktail glasses and a huge selection of options to make beautiful drinks. I don't drink during the week because I work a lot. But I enjoy the cocktails very much.
I should not eat sugar. But I love cake and chocolate. So I eat it. I don't pay attention to everything I'm told. If it brings me joy, I do it. And don't feel guilty about it.

As best you can, enjoy each day.
We all get sick and die. Cancer just sounds very scary. Our bodies are so strong - and so fragile at the same time.
Don't let cancer get in the way and rob you of your precious life energy.

Feel free to write again.
It's harder, I think, to be the family and friends. For the patient - you get stronger and grown emotionally.

Con amor

Cycle 10

Encaustic photo transfer

 Cycle 10 and I'm going strong. 

3 pills (oral chemo, Capecetabine) twice a day x 2 weeks followed by one week off = 1 cycle.

I was so afraid to start chemo and I am pleasantly surprised that it's mostly OK. At the end of the 2 weeks I start to get tired and go to bed early - I go to bed early anyway but even earlier than usual. I basically follow sunrise and sunset.

The Vix has cut me some slack. If we were in non-Covid times, I'd probably get blood drawn every 3 weeks. But since I'm living in Connecticut, I just go every 6 weeks to a local lab a few days before we talk. It's been a little loose - last time she forgot to order tumor markers. Just checking my agent - I'll "talk" to her August 31 via Zoom so need to remind myself to get to the lab next week!

All good here. Week before last I spent in Chatham with my aunt, my brother John and his family, my bother Mark and sister Amy and her kids. And other cousins floating in and out. Glenn called it the Summer of Love Camp. That about sums it up. We kicked my aunt out of the kitchen and made some amazing meals together. Lots of story telling around the fire pit at night. I came home exhausted as I was also working but it was an amazing experience for the 4 of us to bond as we haven't in decades. Long story for another time.

I am preparing for another solo show at Galatea Fine Art in Boston. November. As in 3 months. So now I'm madly working again in the studio. Here is an example of an encaustic photo transfer. It's 5" square an the image is a photo I took in my aunt' house of curtains in my bedroom. She actually made these curtains. More about this later, too.

New mild pathologic compression deformity in the superior endplate of T7

Why not be stylish on a hike?

With minimal to no associated narrowing of the central osseous canal.  

What??!!

I had scans on July 22 and everything looks good on bone scan but got this strange report from the CT scan. Unfortunately The Vix wasn't there. And I had to go alone - Dana Farber policy is still that no one can accompany a patient for visits. So I met with a new NP who I really didn't like much. She explained this to me but I really don't know what to make of it. I have more numbing of my outer right foot which is a drag but it doesn't seem to impact my ability to hike/play tennis.

The other kind of weird thing is my toenails are discoloring and likely to fall out. Gross! So she suggested Epsom salt soaks and more cream. 

I read her report and she noted that I was "anxious to hear the results". How stupid is that? You try it, bitch. You live 12 years with metastatic cancer, start chemo and wait 6 months for scans. And she also noted I had dirty toenails. Glenn say - she should what a good gardener you are!

Fortunately she is not attached to The Vix and I likely won't have to see her again.

Overall I'm feeling great. I felt unusually tired this week so just packed it in early.

So I'll continue on chemo and see The Vix in 6 weeks for a zoom call.

And keep on hiking in my red floral dress.

WFH

Lollypop
10" square encaustic on cradle board

Working From Home certainly has it's advantages. And I recognize that it's a privilege to be able to do so. I have been WFH since March 16, both my hospital job and private practice. Glenn is returning to the office 2-3 days a week now. Trying to avoid airplane travel - so far so good.

It occurred to me at some point that I can WFH from anywhere. I mentioned this to my aunt at our last trip to the Cape, that I could spend a week with her every month. She asked me on Friday - well, are you coming out for the week? So I will drive to the Cape tonight to spend the week working from Aunt Marty's house in Chatham. I'll take Acadia with me who is almost 6 months now.

On our weekly Friday night zoom call, Aunt Marty mentioned being a widow. It was interesting to hear her use that word. He died on May 30. She is taking on a new life, new energy. She looks like she is 50 years old! And she's 91. No gray hair. Animated, interested in what everyone is doing. She's playing croquet 3 times a week and has started inviting people over for dinner. She never did that! Ever.

She is excited for me to bring sourdough starter, she wants to learn how to make it. She wants to go out in the boat (I am a totally useless boat hand.) She wants to have my sister and the kids over for meals. I work a very heavy schedule and have told her that I'm free at breakfast, sometimes at lunch and work until late a few nights. But she's delighted and hopes to work her croquet schedule around my availability.

As my brother Mark says, she's the bomb.

Uncle Jay

Captain Aunt Marty
Age 91

Uncle Jay died on May 30, his 91st birthday. I attempted to write about this but could not find the words. He was a complicated man. For me, for a lot of us in the family. He was a bully, physically abusive and controlled us with money. You never wanted to be summoned to his office.  A few years ago we made a pact that no one goes to his office alone.  To outsiders, he was charming, energetic, athletic, successful, extremely generous. Inside the family it was a different story. He was top of the list for people who caused me pain. Aren't we supposed to speak kindly of the dead? That explains why I felt so blocked to mention his death at all.

Aunt Marty is having a memorial for him in a few weeks and we are all invited to speak. I will have to write a script and stay on it. My cousin Lee wrote his obituary and described him as "a great man". I will not be able to top that claim. Aunt Marty says she wants closure. It will be mostly just family with a few old family friends. A backyard tent. A bunch of us will stay in the house. Glenn and I have staked out the boat house.

His death was expected. He'd been in a nursing home since February and he was clearly failing. And yet. It was a shock. He was a huge (negative) force. To the very end he was physically intimidating. His body began shutting down, they called my aunt and she was with him when he died. 69 years of marriage. And she's quick to point out that they knew each other 1.5 years before they married in May 1951.

Aunty Marty is thriving. We do a zoom call every Friday night w my brothers and sister and the crew. She is lively, engaged, interested in everything We went to see her 10 days ago and she proposed that we go out in the big boat. She as captain! It was foggy, blustery, cold on the water. And she was loving it. When we came back to the dock I was tasked to tie us on. And I could not catch it in time. Glenn made another pass, and Aunt Marty caught the cleat and tied the boat with such agility. She's amazing. I'm glad we have more time with her. She is a blessing.

I spoke with The Vixen last week. All good! I will get scans in 6 weeks. If all is looking good/better, I will go back to 6 months scans. I am feeling mostly well, this cycle I felt more fatigue and nausea but I'll take it!

Special prayers for Lynn today as she goes in for lung surgery to remove a cancerous mass.

Birthday celebration

Connecticut stone wall

This is week 11 in Connecticut. And my birthday week! I turned 59 on May 28. One of my dear friends, Claude, is also a May baby and she celebrates all month long. I have a preponderance of Gemini friends. Jeff and I share the same day. My mother always had joint birthday parties for me and my brother Mark who is May 25. It's in our blood to celebrate. Jeff... Merri... Bernd... Indu...Chris... Elisabeth...  Eden...Irene (today - 80 - God bless!).

On Thursday I worked a very long private practice day - 9 people - and still squeezed in a lot of birthday. These days I always start the day with an hour hike with Acadia. Sasha is hanging in there - another Gemini - her 10th birthday will be June 2. Love the old stone walls, the burbling brooks, the wetlands and forest which opens into a huge field of tall grass.

Glenn got up early to bake a birthday cake. It's worth looking up. Nutty Cardamom Bundt cake with bourbon glaze. Wow. We both worked... and worked.. and worked... then he came home with a huge bouquet of flowers. We went to our friends Cynthia and Alan's for the first time to have cocktails under a big open-sided tent. Tuesday as well. We sat far apart and it was so moving to be with people again. It made me tearful with gratitude. And from there Glenn and I went on to have dinner at the oldest inn in Connecticut. It was late by then so we were the only guests. Busting out!

And I have to mention the nectarine tree. This is my 3rd birthday in our house and each year he buys me a fruit tree. We have quite a nice little orchard although it has yet to bear much. This year we hope to keep ahead of the raiding squirrels which have striped the peach trees. Our weapon this year will be fox urine and the vicious dogs who mostly like to lie around in the sun.

Cancer: cycle 6. Feeling excellent other than some fatigue and nausea at times but I run pretty hard so it may not even be the chemo. I'll get a blood draw locally next Friday, and consult w The Vix that Wednesday. My sister is kind of an intuitive and she feels I'm going to be fine. Do chemo for a few years and live a long healthy life. I think so too.

Week 10

Wild Ramps

Week 10. Status quo.
We're both still working from home which is working pretty well. Wearing masks whenever we venture out. Zoom cocktails with friends.

Now and then I/we see someone but it's very limited. Has anyone commented that social distance is an oxymoron? How I yearn to hug and kiss everyone! There's Glenn and now 2 dogs... but I need more!

Yesterday I met up with Cynthia and we went forging in the woods behind her house for ramps. Because it's been a cool and rainy spring, there are still huge patches of them. At this point the poison ivy is obvious but it's always a little dicey and I have a high sensitivity to poison ivy. A few years ago I stood on the road as Gayle got off her bike when she spied a bunch in the woods. She went back later and dug... and got herself a severe case of poison ivy that landed her in the ER. So I'm really careful to avoid that stuff.

What do you do with all those ramps? Last night I made sourdough greek yogurt flatbreads on a cast iron griddle - folded in finely chopped ramps (and used homemade Greek yogurt). Foodie heaven.

I go in waves of crippling anxiety/sadness/despair/hopefulness about both the epidemic and the financial impact. Glenn's company provides logistic support for all kinds of materials (food, chemicals, all kinds of stuff) so is facing the macro world. I am a therapist and am facing the micro world. At my hospital job I work almost exclusively with Portuguese-speakers, most of whom are undocumented. This is a desperate population. They are working if they can to avoid losing their apartments and going hungry... and much more vulnerable to exposure to the virus. Many are/have been sick, none of them have died (on my caseload). Plenty have died.

I write this in the early morning, listening to the dogs wrestle. Drinking coffee and surrounded by my houseplants and guitars. It's a soft May morning. Overcast, trees starting to leaf out. From the perch, life is so amazing and I'm so blessed. Yet driving through the city last weekend felt post-apocalyptic.

It's my birthday next Thursday(59!) and Cynthia and Alan have agreed to come over for a cocktail on the patio. At last! He also agreed to play music w me - outside. Huge steps towards "normal". He's a mandolin player in a local bluegrass band. I'm taking an online class from Passim School of Music in Cambridge - Traditional Folk and Rad Americana. It's a good option but nothing like playing and singing with friends. Soon?!?!

Day Trip home

Vintage Martini glasses
Gift from Alex

This photo captures a lot of what we have been doing - enjoying cocktails! We have an impressive liquor cabinet(s). We Zoomed with Julie over the weekend and besides asking to see the dogs, she asked for a virtual tour of our expansive collection. Like most of us, we have turned to cooking in a big way. And drinks are kind of an extension of food. We limit how many nights we indulge (typically not on "school" nights) but are taking a deep dive into creative mixology. Bon Appetit magazine is my own category of porn and I also get their emails so there's no end to new ideas and ingredients. We ask the local liquor store to order. The most recent was Cocchi Ameriano and there is both red and white. So we say - both.

This morning marks the start of 9 weeks here in Connecticut. Our own situation is very privileged. We get food from the local 1960's grocery store - curbside pickup only. So we are eating a lot of weird things like French onion dip and fried onions in the can. Comfort food, returning to rural Iowa of my youth. A local farm does a produce box delivery once a week. They are not providing their own produce yet but from other vendors. It's a mystery what turns up each week but I like to cook that way anyway. And there's a tiny self-serve farm stand with frozen meat, dairy an random things. Sometimes homemade soap, honey, maple syrup.

So food is no worry (now). We have acres of hiking trails out back And in Connecticut the golf courses are open (no touching anything other than your own gear, club house and restaurant closed). That's about the sum of our activities. Working in the garden, painting sheds, lots of discussion about cutting down dead trees for firewood.

All good. Chemo is perfect. I continue to feel really good on it although some days there's some nausea and tiredness but considering.. it's fine. No bone ache. No scary/deadly side effects.

On Saturday we drove back to Brookline. Day trip. I needed warm weather clothes and we met with a kitchen designer to finalize plans for the renovation which will start soon. (Masks, SD.) We both felt anxious about being in the city again. I actually felt panicky - looking at the shuttered businesses, lots of "for rent" signs. Felt very scary. Post-Apocalyptic. Lots of abandoned shopping carts - homeless people? Everyone in masks. It did feel kind of good to be in my house after a few months. I've never been away so long. We saw Amy and Scott briefly for a dog walk through Charlestown. Trying to figure out how to drink coffee with masks on - takeout Starbucks.

But I was very relieved to get back to Connecticut and enjoy a few drinks.
The future?

Cycle 5

"such teachings as these"
16" x 20" encaustic

Still in Bethlehem with Glenn... week 7.

We're working from home... eating a lot of homemade food... golfing... hiking... playing with the dogs... enamored with the Instant Pot... making everything sourdough... and even so, going a little crazy and missing the "old world" so much.

I feel like an immigrant, plopped into a new strange land with no time to prepare. It was if I fled from my house in Brookline on March 16, grabbing what I could.  It's still so surreal. With no end in sight. The death rates continue to climb as some states open... and meanwhile POTUS is still in large, shame and blame as usual.

Friday I had blood drawn at a local lab, and consulted with The Vix yesterday on Zoom. I dialed in - she's working from home - in her pantry! I said, "hello beautiful" as usual. Her hair is really long! My blood work looked perfect and one of the tumor markers was better. So she gave me the green light to do another 2 rounds of oral chemo. Started again this morning. At some point I'll get scanned again.

What was hilarious about the consult is how casual it all was. I showed her Acadia. She told me that she is getting an English lab puppy soon, the litter is due next month. Her 17 yo daughter wandered in so I showed her the puppy too. She told me about celebrating her birthday recently w her on the porch and her friends in the yard. HIPPA out the window! Such crazy times.

We've maintained our self-quarantine pretty much 100% other than picking up groceries curb side and going out to golf and play tennis. And those activities are never crowded.

I don't know how I'm tolerating this but I am. For the most part.

This is a new painting. It has a partner - I'll post it next time.

Merimeko Mask

Week 6 in Bethlehem... we're into a rhythm at this point.

Acadia is sleeping all night. And only a rare accident in the house.

She's quite a good hiker! Sasha is lame and whenever she gets a little better, she is rough housing with Acadia in the yard.... and has another setback. So at this point it's me and little one doing an hour hike each morning. Glenn starts earlier than I do. It's a great way to start a day.

I'm obsessed with the Instant Pot and making all kinds of sourdough bread. And our weight is creeping up! The Covid 15?!

Early this morning Glenn kindly offered to drive me to Quest Labs in a bigger town nearby. The staff there are hard-pressed. They say they don't feel safe - no real PPE. No hardship pay. Exposure every shift to god-knows-what kinds of germs. I'll zoom meet with The Vix on Monday. Usually I'd have a scan around this time - it's been 3+ months since the last one. But these are strange times. She will continue me on oral chemo (just finished cycle 4) assuming blood work looks good.

We both continue to work from home. I'm strangely tolerating the isolation alright. But I have my moments. Last Friday I was in a black mood ALL DAY. It finally lifted when we went out and hit tennis balls around. I need the endorphins to keep my mood and energy stable.

This is nuts.

Week 6 in Bethlehem

Acadia and Sasha

Now "zoom" is a looked-forward to event. An adverb. A lifeline. We have 2 regularly scheduled... and lots ad hoc... as so desperately needed.

In the big picture I can't complain. We are healthy. Both working from home. Live in a beautiful house in the woos. Plenty of food available. Pleasure of the two dogs. Art studio, lots of music to play, golf, tennis, hiking. And have I raved about the Instant Pot yet? Looking at what I just wrote, the gratitudes should flow.

AND YET... this is crazy. I have waves of anger, loneliness, despair, anxiety. Friday a black mood lasted ALL DAY until we went to hit tennis balls around... followed by a few zooms... and drinks.

We've cut each other's hair. Back in college I made a little side money cutting hair. Glenn used to have the most gorgeous 70's rock-and-roll hair, like Mick Jagger. But our time together morphed into "new wave" so I cut his off, Delilah to his Samson. It was the last time he had long hair.

I'm doing fine on the chemo. One more dose tonight and I will have completed my 4th cycle. Only tiny tiny side-effect is the skin around my thumbs is cracking a little, sometimes bleeds a bit. But given what could happen, it's perfect. Strangely enough I feel better on chemo. How can that be? But the NP I spoke to a few weeks ago said that she has heard this before. I used to have intermittent bone pain in certain areas but not since I'm on chemo.

The other definite up-side to being on chemo is that I won't be pressed into service to help out the inpatient psychiatry team at my job. So far it's voluntary to do inpatient shifts, but it might become mandatory. I feel guilty about that, not helping out. But who wants to work in PPE on inpatient service? So at this time I say, "yes, chemo".

Judy my music mentor/neighbor/friend/co-leader-of-the-monthly-VFW-bluegrass-jam (will that EVER happen again?) introduced me to a Linda Rondtandt/Anne Savoy album entitled "Adiau False Heart" that was released in 2006. I have learned 2 of the songs and am inspired to learn every song on the album. It's good to have goals!

Social Distancing... week 4

Glenn and Acadia

Tomorrow starts week 4 of "social distancing". I'm surprised I've made it this far. If you had told me that I would not see anyone for weeks on end, I'd have said, well, I just can't do that. It's kind of amazing what you can adapt to. That said, we have it EASY. We're lovers who share a beautiful house in the woods. Our backdoor opens to hundreds of acres of preservation land. The grocery stores are well-stocked and we have a very entertaining new puppy. And technology like Zoom helps somewhat... we are not 100% fully sealed. We drove to NH last Saturday to pick up a puppy... then to an outfitters store to buy a crate. And I go into grocery stores on occasion  Mostly we stay at the house and work during the week.

I've been avoiding the news all weekend. Last time I looked, there were temporary morgues outside one of the NYC hospitals. Trump was being spiteful and denying aid to some states governors that he does not like. His usual terrible behavior. And there are also photographs of the nurses at Cambridge Health Alliance who are using garbage bags for protection. And going to work. Truly sacrificing for others.

My psychiatrist friends at CHA say that they will be "redeployed" to work with COVID patients. They don't know how to run ventilators. Their expertise is mental health! Either accept redeployment or get furloughed. COVID deaths circle closer. A friend who is a primary care doctor is positive - one of his sisters is positive with mild symptoms and the other sister is on a ventilator. The noose tightens.

I often wake before 5am, gripped with anxiety about this situation. Knowing there's not much I can do about it - other than tend to my therapy patients. I've waived the co-pays for everyone whether or not they are working. And am starting to work Fridays as well. It's what I got in my wheelhouse to offer.

God help us.

Acadia

Acadia and Sasha

Our response to the worldwide pandemic and economic collapse: get a puppy!

We've been talking about getting a second dog for a while now. Sasha is slowing down and her time on the trail is about 1 hour at best. She will be 10 in June. We are both working from home... and live on 10 acres in Connecticut that abuts hundreds of acres of preservation land... so we decided to "go look" at puppies on Saturday. As if we wouldn't come home with one!

Sasha's breeder, Crescent Pierce, died a few years after I got Sasha. The line went to Celtia Labs in New Hampshire. We went on their web site, saw they had a new litter of English chocolate labs - 10 weeks old - and made an appointment to go visit on Saturday. And we came home with Acadia!

We should have been clued in. She was the one racing along the fence line where the big dogs were in their pen. Super high energy, super cute. We brought her home and all hell broke loose. (As we knew it would.) But what better way to ride out a pandemic? As the skies fall and everything falls apart, here we are up in the woods, chasing around a crazed puppy.

The first night she was up 3 times and still pooped in the crate - as she cried all night long. We took turns taking her out. Bit by bit we pulled up all the rugs, barricaded the kitchen and tried to work. Ha ha. She is non-stop. But the second night she slept in her crate. We still get up to take her out but at least we're all sleeping.

Yesterday a big break through. We set up her crate in the kitchen as I work at the kitchen table. And she was relatively quiet. Every now and then she'd bark or yelp while I was on the phone. I'd explain in my most therapist-voice that yes, we have a new puppy. Everyone got a spot of brightness.

We're fine (so far). But the virus is lurking everywhere. A colleague's mother friend died. Glenn's employee's father died. A patient works at a hospital on a COVID floor as a nursing assistant. Making $13/hour. No proper protective gear. They reuse the same mask over the 8 hour shift. Just saw photos last night of makeshift morgues outside a NYC hospital.

What a shit show.
I wake before dawn and lie in fear of what's to come.

There is a Chinese curse which says “May he live in interesting times.”

Yamaha GF-412SB
aka Lily Belle

Hello from lockdown in Connecticut!

"Interesting times" indeed.

It blows my mind that 2 weeks ago - March 6 - I had an amazing art reception at Galatea Fine Art. I hugged and kissed everyone. Although a few already had the forethought to do "social distancing". Afterwards a bunch of us went out to an Irish bar and shared drinks (yes!!) and plates of food. That feels like another life. Entirely.

I saw The Vix on Monday and she said I should self quarantine and that Glenn should, too. So I've been here in CT with him and Sasha since Monday night.

We are cozy in our own little world. We can both work from home. The hospital has the outpatient psychiatry staff on home-based calls and I'm doing the same with private practice. So we were both busy all week. Harvard University is asking for more therapists to help out - they have a huge need with their distance-learning students - so I'm actually taking on more work. It's fine - it's a good distraction and a way to feel helpful to the greater good. I'm also waiving co-pays for private practice. We're so lucky that we both have jobs and are getting paid.

Meanwhile out there in the world.. I just read that already NY is out of ventilators. Holy shit

We called Aunt Marty this morning who is on the Cape with my cousin. She's OK there for now but we have invited her to live w us in CT. Perfect set-up with the guest cottage.

Last Friday I bought this 12 string guitar at the local music store. Such a beauty. She's a strummer (not good for boom-chuck bluegrass style) but excellent for folk/folk rock like Neil Young and Bonnie Raitte.

We have food. Our own well. Bought a bunch of garden seeds. I think we might get chickens too.

I/we have been so torn about me moving here. This is a great test run!

We own 10 acres and abut 350 acres of preservation land So other than the ticks - and we find them on us every day - its lovely here. I'm painting, playing the guitar (and hope to practice the accordion too although that's its own universe). Cooking. Working. Hiking.

It's a cocoon. Meanwhile the sky is falling. God help us.

Working From Home

Vintage 12 String Yamaha

I write this hastily.

I'm home tonight. In the morning I have an early visit w The Vix. If my counts looks OK, presumably I'll start round 3 of chemo.  I'll pick up my medications, and high tail it out of town. My plan is to move temporarily to our house in Connecticut. Just heard that the governor of Massachusetts has ordered all restaurants to close.

This is beyond surreal.

My hospital job has given me permission to work from home, so I'll do all my therapy on the phone. Unprecedented. And I'll offer my private practice patients phone option only.

God knows where this is going. I'm really, really frightened.

My Uncle Jay is at a skilled nursing facility and they are on lockdown. My aunt has returned to the Cape and my cousin will be with her for a few days. I've offered to have her live w us in Connecticut as long as necessary. It's all so fast-moving -

but in the meantime on Friday I bought myself a beautiful vintage 12 string guitar. Isn't she lovely?

I'm flying around tonight. packing perishable food and clothing and my computer and art supplies. have asked my neighbors to water the plants. Fighting to remain calm. I restarted my formal meditation practice on Friday. God knows I need it.

God help us all. May this resolve relatively soon and with a relatively intact world.

yayoi kusama

Love Is Calling
ICA, Boston

Are you feeling like Alice in Wonderland? What rabbit hole have we collectively fallen into?

I had my art opening last Friday, a week ago. It was an amazing day - my brother Mark and his wife Jane came over early to hang out, and my sister Amy and her 3 teens. We drank tea, played music, ate together. We all went to the gallery show, my other brother John and his wife Andrea and son Zane flew up from Virginia to spend the weekend with us. The gallery reception was packed, I sold 4 pieces. After the show,  bunch of us went to an old Irish bar for drinks, burgers. I got totally tipsy - forgot to eat! Like a dumb teenager.

And it was a rolling family party the rest of the weekend.

Now a week later EVERYTHING is shut down. I'm so glad that I had my reception, spent time with the extended family including a visit with our Aunt Marty (90).

Universities, schools. I've made a few trips to Trader Joe's and it's stripped. So disturbing. Staff says they restock 8 times a day and can't keep up.

My commitment is to try to live as normal as possible, to go to local businesses. Not hoard. Of course follow the guidelines about hand washing. My hospital job is considering closing outpatient psychiatry and having the staff work from home. Yesterday I offered my private practice patients the option of in-person or phone call. About half wanted to come in. Half preferred a phone call.

Bizarre. Everything feels so unstable, unprecedented.

I'll see The Vix on Monday. I have completed two cycles of chemo. I'll ask if I'm immunocompromised. If I am, I may consider going on long term medical leave. I'd continue to get paid (presumably) and have enough sick time for about 6 months. This time I had no tiredness. I felt totally normal. But maybe things are so frayed and weird that I'm not paying attention to my body. So focused on what's happening around me.

A few weeks ago I found a used Yamaha 12 string guitar at a small shop in Connecticut. Gorgeous instrument. The former owner sold everything to go do van life. It's inexpensive - $225 - so this will be my retail therapy for the weirdest week of my life. 

The Memory Project

The Memory Project
#5

Here's an encaustic collage. 8" square. I am in an art group called New England Wax and someone proposed that all the members (around 30 of us) make 30 pieces of this size, and one 12" square. The project is due March 15. It's kind of unclear what we're doing with them other than a swap. My source material is a 1917 yearbook from University of Minnesota. It's full of black and white photos as well as some amazing illustrations.

I finished the paintings for my show which opens on Friday. So now my creative energy turns to finishing the pieces for this project.

and once this is done... I am thinking of doing some curatorial project of my own. Inviting artists whose work I admire to do a group show. I have a venue in mind, artists in mind and a title/theme for a show. So far the chemo isn't slowing me down (too much).

Glenn likes to tease me that having me on chemo slows me down enough that he can keep up with me. I always laugh when he says that. I'm now in cycle 2. So far so good, a full week in. Last time the fatigue really set in around day 12-14. Which unfortunately coincides with my show opening on Friday. But let's see. The Vix says it unpredictable, that what happens each cycle might vary.

The cumulative problems are hand/food syndrome but so far so good on that. And dangerous diarrhea. The kind that lands you in the ER. But none of that, either.

Yesterday was the VFW monthly bluegrass jam that Judy and I organize. Usually there are 5-11 players but yesterday just 3 of us. Andrew was there the first hour only and overlapped one song with Joel who thought we started an hour later. So I played one hour with each. Joel is recovering from hand surgery and had enough after about 45 minutes. so I played a song by myself for the small audience. What a rush! Glenn teases me about that. too. He says that my next vehicle should be an old van so I can go out on the road and play music. Oh I wish!

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.

Plus One

The procedure on Friday was more intense than I remembered. That's probably just as well. I would hav been more freaked out. In retrospect I wish I'd had someone go with me for the prep. That was in a way more scary than the actual procedure. I had plenty of offers, but sometimes I still err too much on my cowgirl side, i.e. I'm tough as nails and don't need anybody for anything. That was a mistake! Julie picked me up and we walked home. And I'm super grateful to her for that. (She offered to go with me the whole time - I declined.)

Sitting on a gurney in a Johnny in your panties. There was some confusion about where they were going to biopsy. The Vix had told me that the most concerning areas were L2 and L4. So when the surgeon said, "lumbar, correct?" I got very anxious. He ended up paging The Vix and the attending also spoke w her. Then the attending spoke w me. She said she hoped they could get good samples from my sacrum - they'd go in with a drill (WTF??) and a pathologist would be on standby to make sure the cells were not necrotic (dead). If the samples weren't good, I'd have to go back and have it done again. To my left femur. I was told in 2017 that they would not biopsy that area bc of risk of breaking the bone So there I sit in my Johnny - alone - thinking - shit, I didn't sign up for this

I just tore off the final bandage from my sacrum.

We meet with The Vixen on Monday. I'm not anxious about this consult (really? am I lying again?) because even though we're getting results, it's not a question of good results/bad results. It's a question of what kind of cells and therefore what kind of treatment. It's either the long term chemo pills or something else - another pill, I assume.

In the meantime I'm painting like crazy to prepare for my show.
I chose the title "Plus One" because I often paint in pairs. And I think it's funny that these days invitations are often written as "plus one. And people bring all kinds of guests - siblings, friends. After I'd already chosen my title, I got curious about it and found something hilarious on Urban Dictionary:

(noun) - the person who is invited to join an existing coupled unit in sexual activity resulting in a three way or menage a trois. Depending on the genders and desires of the couple, the "plus one" may even become a lucky pierre.

Am I really that hip?
Ha Ha