Spiritual Friend Chris Berlin

Art With Amy
Brookline, MA

This morning I spoke with Chris Berlin. He is a Buddhist teacher at Harvard Divinity School as well as a meditation teacher. I met him in 2008 when he worked at the Dana Farber. I have also gone to a few of his meditation classes over the years. We talked about 20 minutes about where I'm at, what I want. I told him that in part I was seeking him out to get The Vixen off my back - he laughed. We agreed that because we already know each other, that I can contact him at any time and we can meet on an as-neeed basis. I told him The Vixen's often-stated comments about my "denial" and inability to absorb what she tells me. He said that's not unusual, that everyone has their own way. He asked if I refuse medical treatment - I said, no, of course not.

In a few weeks he will have a record release party - he's a musician as well. I asked about boundaries - if I see him privately, if that is a problem to participate in future meditation/music events. He said, it's fine. In the meditation tradition it's part of the practice to meet for interviews with a teacher. He would see meeting with me in that light. So I'm welcome to participate in any way in the future.

This feels good. I have someone with a lot of experience with cancer, Buddhism, meditation and yoga. And music! I will reach out at some point but for now I feel steady.

I'm walking over to the Dana Farber now for the monthly visit. It's snowing lightly.
All good.

Skate Boarding

Lynch Family Skate Park
Boston

Glenn grew up skate boarding. He still has his original board from the 70's. A few months ago we went into a skate shop and the hipster skaters went crazy over his "vintage" board.

We often bike in the city along the Charles River and explore new areas and we found this skate park. He's been wanting to go skate, so we packed his board in the bike pannier and we went yesterday.

I took this picture as we were leaving. In the distance is the Zakum Bridge. It was a cool scene. As we arrived there were a bunch of young men smoking pot - the smell was very intense as we went by. But there were also a lot of little kids there on bikes, scooters, roller blades and skate boards. I saw one other woman, a young Black woman who was boarding with the best of them.

After falling off my long board in fall 2016, I have sworn off trying again. That was quite a scare as I ended up cracking my pelvis. And when I finally went to have it looked at, it lit up on a bone scan like cancer does. But healing fractures show up the same way. Or a similar way. Anyway, my skating career ended before it began.

It was a new subculture to watch. And I took lots of videos of Glenn skating. He's very graceful on anything that moves - skis, surf board. I am a landlubber and am totally clumsy on anything other than a bike.

Tomorrow I go see the NP for my monthly visit. My friend Suzanne suggested that I treat myself to something fun on visit days. Rather than resist it, to embrace it. So, dear Suzanne, I will! Just now sure what it will be as I'll go to my hospital job afterwards... any ideas?

New England Wax

Daughter of Danaus

A few months ago an artist friend suggested that I apply to become a member of New England Wax (NEW). NEW always had the reputation of being more "professional" than the other encaustic groups. It always had a mystique of exclusivity. Over the years there was bad blood between NEW and the other groups I belonged to. I no longer belong to those other encaustic groups and for that matter, have been doing very little studio work. My clinical work has taken most of my energy - I feel in a very good place professionally - and between daily meditation and yoga - and now music/singing - I am busy. And it's not even bike/golf season yet. But my friend Otty told me that NEW was looking for new members. You had to be invited by a current member, then juried in. She invited me, and I submitted my application last month. I was pretty sure I would not get in. Most of the members are full-time working artists, have MFA in fine arts, and have gallery representation. None of which I have.

But to my great surprise, I got in!
This is kind of unbelievable.
So now I need to find/make time to get back in the studio.

This morning I'm having coffee with Cheryl, but am determined to find a few hours for studio. Then tonight I'm meeting Sarah Jane for dinner... then we're going to "Summer Camp" at our guitar teacher's loft. Every so often she invites her students to a meet-up. Everyone is invited to play and sing a solo. So I'm screwing up my courage and will present a song I just wrote. My first song. "Daughter of Danaus".

Playing with the band

Marty Brennan

There is an upside to living with cancer. You stop worrying (as much) about others' opinions and judgments. And you know you need to live as fully as possible as much of the time as possible. So here I am on Sunday night. We got invited to a musicians night at Cynthia and Alan's, our friends in Woodbury. Alan plays with a roots/blues band and one of his mentors/members is Marty Brennan. Alan had told me to bring my guitar. He then said - join us. OMG my heart was pounding. Another guitar player handed me his tuner. Then I sidled up to Marty.

He is an illustrious guy. Alan said he was a wheelman for Bob Dylan and knew/knows all the greats from the early folk scene in NYC. He has a twinkle in his eye. I asked if I could watch him and play along. We started to play a little while the band warmed up an off we went. He called out the chords to me exactly when it was time to transition. After a while he said to step into the group of men - mandolin, stand-up bass, guitar and banjo. And me and Marty. It was truly one of the most amazing experiences of my life.

Glenn sat next to the fireplace and urged me on. I played and played and played. Sat out for a bit next to Bill who played trumpet from the side. Who also called out the technical aspect of chord progressions for me. Then I got up and played some more (not that I understood what he was saying at all).

My fingers hurt... and the band played on.
As we walked out, Marty shouted across the room, "she has rhythm!". My heart soared.

I asked if he gave lessons - he said, "no, I show". He is legally blind but said I could go to his house and he will "show" me. Can't wait to get back to Connecticut!

"If you were a horse, I'd bet on you."

Macricostas Preserve
New Preston, Connecticut

The Vixen called me back today as scheduled. I was quite anxious about it - it felt like a risk to open this up but it also felt necessary. For 9 years I counted on her like I've never counted on anyone. So our communication getting messed up has been really worrisome.

The upshot is that we worked it out although there were some heated moments. I had planned to keep it "factual" but in truth, it felt more emotional. So perhaps against my better judgment, that was a huge part of the conversation. I knew it could potentially backfire, leaving me feeling misunderstood and even more vulnerable. But she rose to the occasion. We talked for about 30 minutes and we both agreed it was a hard conversation but in the end I think it felt satisfying to both of us.

I asked her not to talk to me anymore about the "psychosocial" aspect anymore. She agreed to let me bring it up if I felt I needed some help around that. I also told her that I was considering her advise, and had identified someone I could go to if I felt the need/desire. Way back in late 2008, on my Dana Farber registration, I circled "Buddhist" as my religion. I am not a Buddhist but it felt the closest category. During a visit a man named Chris Berlin showed up and said he was the Buddhist chaplain and was available if I wanted to talk to him. He and I and Lucy struck up a friendship and we often chatted when I had visits. He left after a few years, and since then I have attended a few of his meditation classes. He would be the perfect person to seek out. He knows a lot about cancer, he is a spiritual teacher and he's a cool guy. The Vixen was happy to hear that I was open to the idea.

I felt a HUGE relief after we talked. We are back on board and I feel good about continuing to work with her. And hey, if I was a horse, she'd bet on me.

Call Scheduled with The Vixen

Macricostas Preservation
New Preston, Connecticut

I have been puzzling over my relationship with The Vixen, wondering where we went off the tracks, how to address it, hoping we can get back into a better place. After a lot of thought, I decided to email her through the patient email portal - I'll never make the mistake of texting her again - in fact I deleted her number. Glenn has it in case of true need. Anyway... I sent a very simple email, requesting a brief phone conversation. Someone called today and said she's available Thursday morning. I want to prepare for it. To let her know how grateful I am for the first 9 years of great care. But over the last year or so, it feels really different.

It's like she has reached beyond her area of practice expertise , i.e. a breast oncologist and has edged into my "head". Rather than helping, it makes me feel defensive. It's like what I say or do isn't "right", I'm not pleasing her somehow. Admittedly I was raised by a narcissistic father and spent all my energy trying to please him until he died when I was 14. and that pattern can get played out, I can get triggered. I wonder if that's happening here? At the end of each consult, I am in tears and not feeling good about the interaction between us.

I really want it to work. but if it doesn't, we can't figure it out, I may consider looking for another doctor. It feels that important to me.

Radiation Oncologist weighs in

Wednesday I leave the Vixen's office feeling defeated, devastated. A body blow. Today I saw the radiation oncologist NP and feel so optimistic. Either I'm totally crazy... or different providers have different takes on it. I was telling Glenn and he said he wished he'd been there... it's truly crazy making.

I was feeling so sick of all this that I refused to get my vitals done today. A small act of sabotage. Anyway...

The NP came in - first time we ever met. She was very smart and lovely. Andrea Kelly. She said that they are very happy with the targeted radiation they did in September. It worked! The cells in the middle are necrotic - they died. Great news. She said that they are NOT CONCERNED about the new tumor on the top of my right femur bone.  They will watch it. I'll get bone scan and CT scan done in 3 months, then presumably in 6 months. At the 6 month mark I'll go consult again with radiation oncology. She said that if I develop pain, I should get right back in to them and they will radiate rather than letting it go and the bone breaks. That would be a much worse scenario. We finished the consult with me giving her advise about winter coats and how to deal with the cold. I told her I'd just bought goggles so we can snow shoe tomorrow in super low temperatures. She was impressed.

She did tell me that I have another tumor somewhere on the pelvic rim - my god, how is it that I don't know about these things? It's been there for a long time but it's quiet.

I bought this book for Glenn a few years ago for his birthday. We are making our way through it. I thought I'd use the alphabetic names to keep track of my tumors. I feel like I'm an astronomer discovering new planets.

Tumor #1 was on the right pelvic rim. It was radiated in 2008 and has not bothered me since. Let's call that one Absolute Martini.
Tumor #2 was discovered in July. Let's call the one on my left femur bone Allen Cocktail. It never hurt, it hasn't  changed. It's quiet.
Tumor #3 was also discovered in July. On right sacrum. It was blasted with radiation on September. Allies Cocktail.
Tumor #4 - the quiet one for who knows how long somewhere on my right pelvic rim. Altertini.
And finally Tumor #5 that was discovered just now on the very top of my right femur bone. Apertivo.  That one came out of nowhere since August. That's the one I freaked out about on Wednesday.

But if the docs are not worried, I'm going with that.
I will make a few changes to my life - will drop a few hours at my hospital job. Plan more trips and get more active in a meditation group and I think I'll also sign up for a Travis Picking guitar class.
More fun, less work. Yea.

The morning after

Roxbury, Connecticut

I'm still trying to figure out what this means. How I feel about it. Phil started out the meeting by saying, "things look good. Stable. The tumor on your sacrum shrunk as we had hoped - the radiation worked. The tumor on your left femur has not changed. That's OK. If things don't get worse, stay the same or improve, it's all good." True. All good. HOWEVER, this new spot on top of right femur bone is freaking me out. That area was clear when I had MRI in August, and now there is a 1 cm tumor. They have told me in the past that bone cancer (it's technically breast cancer in my bones) is slow growing. This does not seem slow growing to me.

It feels impossible to plan in any meaningful way although the Vixen said to plan, to carpe diem. (Is that a verb?). No - it's not.

I hate living on a shorter leash, i.e. more frequent visits. She said that a lot of patients have things go terribly wrong even between monthly visits, and she wants to avoid organ damage or a bone break. She prefers a "controlled" bone break, i.e. surgical procedure. And that the liver can go to shit fast. that would get picked up on blood work. She said that I'm in a high risk situation now. Holy crap.

She said she thinks I'm angry about all of this. That maybe I'm not aware of it. Of course I'm angry and am well aware of it. Not that it really matters, but I wonder what I'm doing/not doing or saying/not saying that has her worried about me. I wonder how other people react. When you are at the hospital, no one seems in the slightest bit upset. I've never seen anyone crying or wailing. It's very calm there.

Dying doesn't scare me. Being sick terrifies me. In my darker moments I wonder how that would be. Unable to move about freely, to be in pain. Where I would go, how I'd manage. But I try not to go there. But after a day like yesterday, it's inevitable.

It's a snow day here in Boston. It has some ridiculous name - cyclone bomb or something like that. The storm even has a name. When did that start? I thought that was only hurricanes. It's not a great day to be snowed in as that's when I tend to ruminate, when I'm home alone. I spent the morning with Robin. We let the dogs romp around, then she made us breakfast. I've invited another neighbor friend, Amy, for lunch but it's really starting to blow.

Tomorrow I see the radiation oncologist in early afternoon. Let's see what they have to say. 

The good news.. and the new concern

Arnold Arboretum
Jamaica Plain, MA

Lucy and Glenn went with me to the appointment today. Glenn drove up last night. I worked this morning - my way of "coping" and we met at the house at noon and walked over together.

First we met with Phil, the fellow. The first thing he said is that everything is stable. The tumor on the sacrum shrunk and the tumor on my left femur is the same. In cancer world, that's great news. I was hoping that the femur tumor filled in, scarred over. but it's the same. So that's good, right? However, he also said that some tiny new spot showed up at the top of my right femur. They never would have seen it on the bone scan, but I also had an MRI and it showed up on that. Phil said he personally met with the radiologist to try to understand the finding. Basically we're back in wait-and-watch. Which is what we expected would be the likely outcome today. They hope that the hormone treatment along with the quarterly infusion of Zumeta will work and this new thing won't grow.

The Vixen joined us, and it felt like we had our old groove back again. She strongly suggests that I get back on monthly visits which I think are pointless and a waste of time. She said that in fact it's better care, patients have better outcomes when you're more closely monitored. She said that plenty of times she has things go to shit in a few days, even between monthly appointments. So I begrudgingly agreed to do monthly visits at the encouragement of both Lucy and Glenn.

I got pretty upset at the end of the consult. Going monthly breaks down my sense that "I'm fine". The Vixen tried to help "reframe" my thoughts about all of this. That every time I get a good blood report, it's a "win". Right now I'm feeling like I've failed. The cancer is lurking around and now in a new spot. It feels very scary and I feel pretty sad and scared and angry.

And now I head off to my private practice where I can get into the role of the healer. Not the patient.

More tomorrow once I've had a chance to reflect more on this.