Ask your doctor for...Palbociclib

Southwest Harbor, Maine

I haven't owned a TV since 1995. When did those ads start running on TV and in print, suggesting that you ask for doctor for whatever drug? I always thought that was ridiculous. As if one could determine what might be a good treatment. Anyway, last night I was waiting for a patient and was paging through Simple magazine. Lo and behold there was a ad for Palbociblic, the medication I was going to start. It is for metastatic breast cancer promised to extend the time between occurrences if taken with the hormone I'm on - Letrozole. And the picture of the 3 women (about my age) looked pretty appealing. I don't remember exactly, but it extended the timeframe from roughly 12 months to 24 months but the fine print said that extending the length of life has not been studied enough. On the one hand, I wanted to call The Vixen and say, put me on it! It promises to double the efficacy of  Letrozole by itself. On the other hand, it freaked me out. 24 months? that's all they got?

The more time away from consults and the hospitals, the better I feel. If I didn't know I had a tumor in my thigh bone and one on my sacrum, I would say I'm super healthy. My energy has returned. I fly across the city on my commuter bike, I work with great dedication at my two jobs. I love working - it's very satisfying. I feel really present. My wait list grows.

Last night Julie, Sarah Jane and Jeff come over for a little get-together. It turned really cool so we decide to stay inside. We drank rose out of delicate old-fashioned etched 1940's wine glasses and ate chocolate. And laughed a lot. This morning I'll go to yoga, then a few of us will go to reflexology, something I've never done. Lunch with Carol - maybe some studio time - then to Connecticut for the weekend. I'm feeling good again.

The Vixen has often criticized me for being "in denial". I'm going to stay in my happy place. Now and then she sends me to see a therapist. "for support". No thank you. I'm going to follow the lead of my brother-in-law's father who lived for 20+ years with metastatic cancer - don't buy it until you have to. Thank you, Mac.

No "Smart" Drugs

Maine bouys

Glenn and I had a wonderful week in Maine. I was able to everything I wanted. Every day I felt more energized. We biked the carriage trails of Acadia National Park, hiked some rugged terrain (I even went up some rungs) and played golf a few times. The timing was perfect.

And today we went to see The Vixen and Phil for follow up/ post radiation plan. While there was no bad news, the consult left me feeling quite depressed and uncertain. We initially met with Phil who said that because my white blood counts are still quite low due to radiation, that I would not start the target drug treatment this month. The Vixen came into the room a bit later, and said that I would not be starting that treatment anytime soon. She said that I like the less-is-more approach, and that the medication (I can't remember exactly what it's called) would have some bad side effects and little value at this point. She talked some about future clinical trials - if I start the medication now and have to go down on the dose, I would be ineligible for future trials. As if I care. Whatever.

She did not offer any reassurance but the language was more like "as the disease progresses...". She said she is not sure if the current treatment will work as the bone biopsy determined that the cancer is not hormone sensitive but because of other characteristics, they are treating me as if it is hormone sensitive. If it does not work, she will change course. Maybe I'll need to be biopsied again. It's all very confusing to both of us. But I left there in tears. Walking home, I talked about "running away". Quitting my job, selling my house and moving somewhere far away, a little cabin on the rugged coast of Maine. Something like that. I know I SHOULD feel grateful for so many things. But I don't. I'm really pissed off.

As we checked out, I saw another patient. A young mother with her baby in tow. My god. That's a terrible scenario. The lab area was full of so many people. You can't necessarily tell who is the patient unless you see their wrist band. There are a lot of seemingly healthy people walking around with cancer.

I don't understand where I am on the wellness/illness continuum. Is it time to make changes? What would I change, anyway? I'm down and confused and angry. I don't want any of this.

Energy Recovery

 A Walk in the Neighborhood

I took this picture yesterday morning as I was walking Sasha. She is 7 now and getting gray around her chin but people still ask if she is a puppy. This planting caught my eye and made me think of Paula, a dear friend who lives in LA. She said the lantanas remind her of her mother, and that made me remember my mother's petunia plantings inside the big tractor tire in Iowa when I was a child.

During my last treatment on Thursday, I was on the radiation table thinking about my mom and dad who are long gone now. Thinking about the rambling white farm house out on the edge of town, about the lonesome pines along the driveway and the sour cherry trees that lined the white wooden fence. And the tractor tire bed of petunias. Pink. Always pink. There's something poignant about going through a crisis - especially a health crisis? - and wishing for that kind of support. During this time I've often wondered what they would say, what they would do. My dad was a small town country doctor with his little black bag. He worked miracles with what he had. But this - this he could not fix. I don't put much energy into thinking about why I've had cancer. But my best guess is his exposure to farm chemicals when he was a college student in Iowa. He spent summers with his uncle and cousins. Jim tells me about them walking around with leaking bags of DEET on their sweaty backs, spraying the weeds in the fields.

Friends ask me - how are you? do you want to go out? what would you like to eat? It's as if my brain was radiated, too. I can't decide anything. I have no strong opinions. I have no opinions. Just getting through these last few weeks and working has been enough. Too much. Last night I went out with Cheryl to a fantastic Afghan restaurant. Earlier in the week she asked - what time? where? pick you up? each question I deferred. Please decide, I said. Anything is fine with me.

So now it's time to recover. The build up has been since mid-June. In fact I think I flew to Paris June 16 and I had this intense feeling of foreboding that something was really wrong.

Yesterday I took another guitar class with a singer-songwriter. I've hardly held the guitar these last few weeks much less practiced much. I'm trying my hand at song writing. Friday mornings I have a standing date with my friend Amy. We meet at my house and work with encaustic painting. Yesterday we went outside and set pieces on fire with shellac. It's kind of dangerous but really cool. I continue to practice yoga and meditation every day although my practice is only about 30 minutes these days. But it works for me.

And this morning Glenn and I will.drive to Maine. First stop will be Portsmouth, NH. Our college friend Butch owns a brew pub called Earth Eagle. We will buy some growlers from him. Second stop will be a kitchen store in Bath, Maine to buy a popover pan. You can't go to Acadia National Park and not have popovers. We hope to bike the carriage paths, golf and hike with Sasha. And rest. Oh yea. That.

I Rang the Gong!

the gong

Today was my final radiation treatment. #10. When you start, they point out the gong on the cheek-out desk. On your last day you get to ring it. And today was my day. Not a moment too soon. I don't know how much more I could tolerate. I am beyond tired. Often I feel quite sick - nauseous. And yet I've maintained my work schedule throughout. I'm kind of hard-headed that way. Psychologically I think it helped to maintain some sense of "normalcy". And I"m not sure of the benefit of not working. I'd just mope around the house or run myself ragged seeing friends.

I saw the radiation oncologist a few days ago. She said that I'll get called back in 3 months for an MRI. at that point any inflammation would have subsided and they can see what's what. So I'm done with this part of treatment.

Glenn and I will be in Maine for a week starting on Saturday. We planned this trip to Acadia National Park some months ago and will stay in a little cabin on the water, just outside of the park. We are going back to a place we loved last year. It's comforting to return. Sasha will go with us and we hope to do lots of hiking, biking the carriage paths and golf on a funky little country 9 hole course.

When we get back, we will see The Vixen. Let's see what she has in mind. Last time we talked, it was going to be "smart drugs" and something to prevent further bone involvement. but it's a moving target so it's always wait-and-see.

The insomnia continues to be a big problem. Now I'm exploring melatonin. Not sure the marijuana was so helpful. Hopefully I can figure out what works as Phil says I have to stay on the Letrozole. But I'm in charge, not them. It has to be something that will work long-term. It's a work in progress.

Double Treatment

Tumblers by Amy

Today was radiation #7. Getting there! My appointments this week are 6:40am. I'll finish on Thursday. I'm happy to report that the sciatica symptoms continue to recede. My knee area feels totally normal and even the heel and outer toes feel more sensation. I am astonished at how well this is working. Presumably the tumor is shrinking which takes the pressure off the sciatic nerve. She had said there might be some residual long-term damage but already this is quite amazing. I could easily live with it. I am able to do one-legged yoga poses which is my benchmark for good enough. Anything more than this is really a boon.

Another positive thing is that I'm sleeping with no drugs. Sleep really is a mystery. I don't know why it's suddenly OK again. I still wake up with hot flashes but am able to fall asleep pretty easily. That I can live with, too.

What I'm noticing is a sense of exhaustion that hits me in waves. That's the radiation. I'm getting blasted with it - it's very focused but very intense. I hit a wall and just have to stop. (I hate that!) I'm also nauseous much of the time. The doc says because they are treating the sacrum, it affects the digestive organs. I am not vomiting which is good. But really sick to my stomach. The exhaustion and nausea will subside after treatment ends. But then I'll start the "smart drugs" and something to compensate for the bone-thinning side effects of the Letrozole. But let's see how that goes...

My sister has been making beautiful pottery. She made this pair especially for me and Glenn. He likes cups with white insides and I like handleless. And they are brown like Sasha. Perfect! We met up this morning so she could give me these and she also gave me some reiki. It was crazy - we were sitting on a bench along a very busy stretch of Boston University where she works. She had one hand on my femur and one hand on my sacrum. We both had our eyes clothes. We must have looked like a very strange pair. But it was lovely to receive both the beautiful cups and the healing love energy from her.

Gabapentin? No I'd rather eat candy, thanks

Postcard Art by Valerie Spain

My friend Valerie has taken to making postcard art and mailing it to friends. So far she has mailed me about 3 of them. Her work is amazing. I told her yesterday that her work continues to amaze and impress me. You can find her on Instagram at @SpainV. We met at an art show that we both got juried into. It was some years ago now. I walked in the show and fell in love with her piece. As she walked up, I was photographing it. I was smitten! And we've been good friends ever since.

Radiation Treatment: 5 down, 5 to go. It's usually weekdays but there was a gap on Monday due to Labor Day holiday. So I'll again this afternoon, then finish next Thursday. I met briefly with the radiation oncologist on Tuesday. You biked here, she says? That day I spent 2 hours on my commuter bike as I went to work at the hospital job, took a very long lunch to bike back to treatment, back across the river to my job, and worked a 10 hour day. I'm a hero in my own mind. Tired? yes. Nauseous? yes. She said this is all normal. I'm getting a huge blast of radiation each time. The amazing thing is I feel huge relief. Even after 2 treatments, the weird sensations around my knee had stopped. Now I have a lot more sensation in my right foot. So clearly it's working! The tumor must be shrinking so therefore the pressure on my sciatic nerve is lessened. My sacrum is sore the last few days but again, all to be expected. The area is inflamed but it will all quiet down once treatment is over.

However, as exhausted as I feel much of the time, insomnia continues to plague me. I finished my first month of Letrazole and it's definitely the culprit. I called Phil and we talked Wednesday night. He said that I must stay on Letrazole, he does not want/will not switch medication. I'm OK with that, I guess. He suggested I try gabapentin. I duly picked it up yesterday and then I read about it. No way I'm taking it. It's primary use is for nerve pain and seizures. If you go off too quickly it can cause a seizure. It's off-label for anxiety and insomnia. You dose up over 3 weeks and then you stay on indefinitely. NO THANK YOU.

He suggested another anti-depressant Effexor/venlafaxine but said it causes sexual side effects. NO THANK YOU.

So now I've shifted camps entirely and am in favor of medical marijuana.
Thank you brother Mark!
Yesterday I started at private practice at 8am - went to radiation - and finished at 7pm. I got home, drank a beer and ate some candy. And I slept! In January recreational marijuana will be legal in Massachusetts so I won't bother to get a medical card. There is a dispensary in my neighborhood. Initially I was appalled as there are always police at the entrance. Now I'm like - perfect!

Reefer Madness

At the Factory

On Friday I made a pilgrimage to my brother's temple of weed. I was desperate. I'm not sure what's causing the insomnia but it's either the Letrozole, the radiation treatments or just the stress of the last 2 months. Anyway, with great trepidation I asked him for some help.

Last time I was at his house I think I got a contact high and found myself challenged to get out of the parking lot of the local grocery store after I left his house. True.

Anyway, he has an amazing set up. Glenn says he's really more of a farmer, interested in plant genetics. He's brilliant at what he does. He showed me around and asked what I wanted. No clue! So I settled on about an ounce of flavored hard candy and some fudge. The hard candy is kind of like butter brickle. You have to crack it off. How much to I take, I ask. He shows me a chunk. I think - yea I'll probably take a quarter dose of what he recommended.

Friday night we had a few drinks, and we decided to try the candy. My brother said to wait for about 50 minutes which we did. I really didn't feel much of anything - kind of hard to tell after 2 martinis. (Yes, I'm drinking these days.) But that night we both slept for about 10 hours straight and could not get up until 12 hours later. That afternoon I took a 3 hour nap. 3 hours! And Saturday night we took a bit more and clocked in 10 hours of sleep. Wow! I'm onto something! Maybe we're taking so little that it we're not getting high but sleeping like babies. That's kind of the point. I always hated how it felt to smoke weed. But I have to say this is working!

My brother said to do it a few nights a week to ensure a good sleep. We didn't take any last night but now I'm curious how it will work on it's own. So I'll report in again on reefer madness but in the meantime I clocked in some serious sleep. What a relief!

Treatment #2 - Sparkly Champagne Low Rise Converse

Radiation team

I wore my sparkly champagne low rise Converse to treatment this morning, and the techs loved them! One of them is getting married next month in white Converse - but she said she would love to find a pair of the sparkly champagne low rise. I said - hey, I can probably hook you up! They were a gift from Robert who works at Converse - he hopes to help fulfill the bridge's dream shoes!

So now we're 2 down and 8 to go.

The department is closed on Monday so I'll resume on Tuesday. I am incredibly relieved to be in active treatment. I don't feel anything weird which is good. This morning's treatment was much quicker - they said that the first time takes longer for whatever reason. I was in and out in 20 minutes.

Last night was a beautiful night on the deck. Karma, Jeff, Lulu, Lynn, Valerie and Jules were here. Valerie asked to stay over so we had a lovely morning together drinking coffee and catching up. All good!

On the way to Connecticut this afternoon I hope to stop by my brother's.
More on that later! That's sure to be an adventure.