Lost In Montreal

Lost In Montreal

Lost in Montreal. Why this title? I have really gotten into cocktails the last few years. Christiane is always on the lookout for new recipes, and she saw this (drank it?!) on a menu in Atlanta. So this is what Glenn and I did the night before scans - had a few drinks. Rye, Cynar, Benedictine, bitters. We added the Luxardo maraschino cherries as an extra decadent treat.

One of the last times I talked with Jim I asked about how he was managing his pain - whether he was imbibing in medical marijuana. He said it was a long bureaucratic process to get it legally and we joked about my brother. He said he was enjoying his vodka. I thought that was so funny as I don't remember him drinking. He said it helped a lot.

We spent all day at the Dana Farber on Friday. I started on L1 with a blood draw at 8am and finished up with an MRI. In between there was a bone scan, CT scan and consult with hematologist. It was a long, exhausting day.

And now the hardest part... waiting. We see the Vixen on Wednesday at 1:30. I continue to feel really good although I have intermittent numbness of the right foot and some weird tingly sensations around my knee. But the radiation oncologist advised back in September that nerves can take a long time to recover, and that the treatment itself could cause damage (don't you love that) or there could be irreversible damage. I can definitely live with it as it is - I can do everything including yoga balances on my right foot so have not lost any function whatsoever. It's just a creepy reminder that something could go terribly wrong at any time... but at the same time, I'm good.

This is living with cancer.

Jim

Christ Church
Roxbury, Connecticut

We got the news that my dad's cousin Jim died early Christmas morning. I texted him a few days ago, and his wife Karin texted back that he was in a nursing home, unresponsive. I asked her to whisper words of love into his ear anyway. He passed peacefully in the wee hours. The impact of his death is heavy. He was a strong connection to my dad who died in a motorcycle accident when I was 14. They were first cousins an spent a lot of time on Jim's father's farm in Iowa when they were in college. Jim told me about the chemical exposures to agricultural chemicals. Jim was a doctor, a radiologist. His brother died of cancer some years ago and his sister has an autoimmune disorder, the same one I have. This is my best guess, too, about why I have so many health problems although it's not apparent at this point.

And as a person, Jim was my kind of guy. He was a professional and loved teaching at the university. It was a family joke - that Jim "retired" although he never really did.   Next thing you knew, he was on to something else.

Our family shares a lot of characteristics. "I do, therefore I am" might sum it up pretty well. Physically active, deep involvement in peculiar things, musical. With a bend towards the spiritual as well. Jim was a yogi and yoga teacher. He was a passionate roller blade. Meditator. and a very talented piano player. After he "retired" he played classical music with a few different groups. He and Karin came out to the East Coast when he had a conference in Boston or just to visit family in the Cape. I remember visiting his parents - Uncle Winston and Aunt Virginia - in their little Iowa town when I was a tiny kid. I have a photo of my sister's wedding in 1996 and Jim is in it, looking healthy and strong. He was a red head which I also loved.

It is very scary to me - he was diagnosed with prostate cancer a few months after I was diagnosed with breast cancer in 2008. Mine was "worse", fully metastatic. And now he's dead.

Friday I go for scans, MRI and will also see the hematologist. Then I'll see the Vixen next Wednesday for results. and the radiation oncologist a few days later. I'll be at the hospital all day. I am bracing myself. My left foot/leg feels weird intermittently. Numbness, tingling. I worry that the tumor has begun to grow again. If radiation didn't work, I'm fucked. I try as best I can not to think about it but as it gets closer it is more looming.

Yesterday I decided to take a chance and booked non-refundable tickets to Berlin to see Otto and Claudia in June. I've been wanting to go for years - they have a window of time - so I took a deep breath and booked tickets from June 1-12. I need something to look forward to.

Art-O-Mat

Museum of Fine Art
Boston

When we're in the city, Glenn and I love to bomb around on the bikes. Last weekend we hit both the ICA and the MFA. Back by the bathrooms, we found this retro repurposed cigarette machine. Rather than selling cigarettes, it sells 2" by 3"artworks on woodblocks for $5. Another patron was there buying up many of them for holiday gifts. There is a sign asking artists to contribute images. I will give it a shot! None of the artists were names I recognized so I'm not sure if they are local artists, regional artists or what. Note to self: apply!

I may have mentioned this but I'll get all my scans and MRI done on Friday December 29. I start early in the morning and finish late afternoon. In addition to the scans, I will see the hematologist. Yes, another chronic health problem. I have an auto-immune disorder called APLS which basically means my blood tends to clot. I've had 2 blood clots - the second one I was doing a really long training ride with Glenn and we biked straight into the emergency room and I was admitted overnight. That was 2 years ago. Since then I've been on a blood thinner so I bleed and bruise easily. So I'll see him that day, too. And now I'm adding a new specialist to the stable - a cardiologist. I wore a Holter monitor for 24 hours last week and there were some findings that I don't entirely understand so I'm being referred to a cardiologist. A friend was over for dinner this week and she said you'd never, ever guess that I have so many health problems. I continue to feel healthy, strong and vibrant.

My December gift-a-day project is on track - which makes this a fun and meaningful month.

Cyclorama

 On Friday mornings I usually see my friend and neighbor Amy. We meet at my place and do encaustics, or sometimes we go to her studio and work in other mediums. A few months ago she invited me to participate in a community art project sponsored by Medicine Wheel. The call was for artists to respond to the theme of "air" on a 2'x2' panel. The project corresponded with International AIDS Day. There was a vigil that started at midnight on Thursday and ran through yesterday. Amy and I biked to the South End yesterday to the Boston Center for the Arts and saw the show at the Cyclorama. The first picture I took lying on my belly with my piece. There were 600 paintings there as well as other installations.

A woman was singing acapela. There were lots of people wandering about. Overnight there were various groups there performing, praying, dancing, or whatever they were inspired to do. The paintings were all for sale for $100 each. Kind of a pop-up format as the whole show/event was for 24 hours only. I've never participated in anything like that before. Art in community. Political art. It was cool.

Today's gift will go to Marcia who is having her 60th birthday party tonight. She said "no gifts" but I found some handmade soaps - who wouldn't enjoy a little treat like that?

Glenn and I are debating whether to dig into a pumpkin spice cake I made today - should we consume it while it's hot, or give to a neighbor? Yesterday I baked a pumpkin that Sarah Jane gave me for Halloween. Sasha loved the skin which she devoured. And I made a cake with the fresh pumpkin. It's always a risk to share something with others when you haven't tried it yourself - so I'm thinking Glenn's argument will win out that we should consume it RIGHT NOW.

Gift-A-Day Project

Chatham, Massachusetts

I started the Gift-A-Day Project many years ago. For the month of December, I give a gift to someone every day of the month. The more unexpected, the better. I started it because December had always been a time of sadness, angst and unhappiness. Since I was a young kid with divorced parents, there was always that. And over the years it developed into a sense of feeling so bad about my life, comparing myself to others imaginary happy families and holidays. Of course I knew better - but the comparing-mind really took root and it was a time of suffering for me. So around 2009 I read a review of a book in Yoga Journal about a woman whose spiritual teacher told her to give to others in the midst of her health crisis. I remember reading that article in late November and had an a-ha moment - I could do my own version for the month of December which was a few days ago. And so a new tradition was born.

I think about it throughout the year, and stockpile small gifts and jot down ideas for what I could do.

December 1 is also the date my mother was killed in a car accident in 1981. That's a very sad and tragic story. I initially met Glenn as a college freshman in 1979, and his mother was a mentor to me from those times in so many ways. She was the first person I met who was struck by my crazy life history to date, who was interested to hear it, to offer empathy and a deep understanding. She was a clinical social worker and such a kind, loving person. I call her "Chiddies". It was she who encouraged me to get in touch with my mom after we had been estranged since I was 10 years old. I'm grateful for the 1-2 years of reconnection with my mom although we never met in person. A story for another time.

So shine on, Mom. And shine on, Chiddies.

Today's gift went to my beloved bother-in-law John. My house is a way-station for so many visitors and John on occasion texts and asks, "room at the inn?". I love that. So I gave him a huge box of Trader Joes Taste Test of Caramels. It made him happy and it made me happy.

Karl Ove

Chatham, Massachusetts

Just as it seemed pointless to sing and play guitar after we heard Lucinda Williams performance last August in Truro, it seems pointless to write after reading Karl Ove Knausgaard. He has been described as a modern day Norwegian Proust. Not that I'm an expert on Proust. In fact I started Remembrance of Things Past several times - and never finished volume I. Knausgaard has written an astonishing 6 volume set - the last may not be translated into English yet - and I'm in the middle of Volume 2. I can't put it down. I stay up later than I should to read, and I often sit on the couch and read while I drink coffee in early morning. At the cost of yoga or taking Sasha for a long walk. It may sound like I'm being flip, but it's true... I am bowed down... humbled beyond recovery... a friend has suggested we have a book group devoted to Karl Ove. And how handsome and bad boy he is! He is causing a collective swoon.

A quick update: I went to see the oncology nurse practitioner Lauren today. I left work at noon and rushed over to the Dana Farber - to wait and wait and wait. It was a pointless visit. I had blood drawn and even at it's worst, nothing ever showed up in my blood. I told her that I thought it was unnecessary and she agreed. I will get all the scans and MRI on 12/29 - and see the VIxen the first week in January and the radiation oncologist around the same time. So I have no news whatsoever other than I feel good. And the more distance I put between me and them (that sounds terrible) the better.

It was hard being at the Dana today - it seemed like there were a lot more seriously sick people in wheelchairs, wearing masks, amputations, etc. It disturbed me to be there today. Cancer.  What a scourge. But I also found myself reacting to the signs. There is a long hallway that connects 2 hospitals called "Walkway of Hope" with hand-painted birds. It made me want to pull out a Sharpie and scribble on it. I definitely rolled my eyes as I walked through. Like that's going to make a difference? I was in touch with my snarky self today.

I also had to pick up a Holter monitor to wear for 24 hours. My pulse has slowed again since I had that cardiac ablation last September. My PCP says it's probably just being in good shape. Funny, right? I don't see how that could be so - I'm not doing any serious training these days although I probably commute 4 hours a week on the bike plus whatever we do on weekends which can include golf, hiking, biking or whatever. Hopefully that's all OK.

I had Thanksgiving on the Cape with my sister and family, then a big family gathering on Saturday at my aunt's house. I took the photo while walking with her down by the dock. She is now 88 and as amazing as ever. She loves to sing and we had a great time together singing "Ain't No Ash Will Burn"
I don't know how many more we will have with her. So I wanted to make sure to see her. She is spry and engaged as ever. She still goes for her walks but was not feeling great so it was limited to walking to the mailbox and around the yard. but she puts on all her warm weather gear and out she goes. What an inspiration.

Silver Linings

White Memorial Preservation
Litchfield Connecticut

How often in my work do I point at my water bottle on the desk and ask, "is the bottle half full or half empty?". How much of life is how we look at it, right?

I had an amazing conversation today with my dad's cousin Jim who is really struggling with cancer. We talked a few weeks ago and at that time he was in extreme pain, largely confined to a wheelchair. As a kid I remember him hunting elk on horseback in Idaho with my family. Over the years he was an avid skier, rollerblader, yogi. He said his pain is much better - why? The tumor has grown larger and killed the nerves in his leg so he doesn't feel much pain anymore. He said he was relieved - he'd rather have a bigger tumor and less pain. How's that for an interesting point of view?

He asked how I am doing. I said the hardest part for me is feeling like I can't plan much in the future. I am a planner! It's maddening not to really have a sense of the future much beyond a few months. I'll get scans and MRI next month and depending on what (if anything), my life may take a very different path. I said that my silver lining (we didn't use that term) is because the future is so unknowable, that I am much more focused on NOW. Today. and actually it's a good way to live. Planning be damned!

My brother called him last week and offered to mail him some of his "stuff" but Jim was already hooked up with medical marijuana which he said was very helpful. I joke with my brother that I've never been more popular - everyone wants his number! 

Namaste for Happy Hour

A few weeks ago I went to a continuing education program at Garrison Institute which is along the Hudson River in New York. It was sponsored by the New York Center for Contemplative Care. I went because 1) I need professional development hours to maintain my social work license (which my hospital job pays for) 2) Glenn's house is on the way and I could drop Sasha off for the weekend and 3) I've heard it's a beautiful place. An old monastery with hiking trails and views of the cliffs along the river.

I somehow missed the part about "contemplative care". The focus of this training was hospice care! But it was a hoot. My experience with silent retreats has been what I can best describe as psychological torture. The last one I went to I basically spent an entire week in a state of sweating, diarrhea and existential terror. Sounds fun, right? but the only thing I asked about this one is - is it silent? The answer was that there were some periods of silence.

So I signed up... and it was great. I have never experienced anything like it. Usually meditation centers - and especially retreat centers - are somber, serious, intense. This one was the total opposite. We did a lot of dyads - you would do it with someone new each time. A typical exercise would be: gaze at each other for what felt like an eternity. Study each other's faces. Then each person would talk for about 10 minutes while the other listened. One question was: what gets in the way of being fresh in the moment? So you'd just talk, kind of free associate and the other person would remain silent and just listen.

Great vegetarian food, lots of walking trails. I brought along my guitar and played outside, either in the the enclosed garden next to the labyrinth or on the great lawn, overlooking the river. I can't wait to go back. One of the workers was wearing this shirt. How subversive!

Zumeta

Clarksdale Orchard

Today I went back to see the nurse practitioner. I'm now on monthly visits. Which I really am not happy about. In some ways I feel ridiculous for complaining about this - there are millions of people around the world who would love to be seen on a regular basis at the Dana Farber - and I also have insurance that pays for basically everything. And I walk there.

I had a blood draw. They charge around $500 for that - and they also add a charge for the phlebotomist. My blood work is always perfect - so I don't see why they continue to draw it. Even in the midst of a bad cancer situation back in 2008, nothing ever showed up. But it's standard care so it's done. I then went to see the NP who listened to my lungs, felt my belly. That's it. Asked how I feel - I feel fine!

But now I'm starting a new treatment - every 3 months I'll get an infusion of Zumeta which is to prevent further bone problems. The hormones cause osteoporosis and the Zumeta helps with that as well as preventing further tumors. Something like that. I took it for years but back then it was monthly. So this is better in that sense.

I'll see her again next month. I will email The Vixen to ask why I have to go. It seems like a waste of money and everyone's time. The important visit will be in December when I get all the scans and MRI to see if the sacrum tumor shrunk.

The thing that's probably most concerning is my super slow pulse. This morning it was in the low 40's. Last fall I had a cardiac procedure - an ablation - for premature ventricular contraction. My pulse was in the low 30's. It's not dangerous per se but over time it weakens the heart muscle. After the procedure my pulse was more normal but still really slow. Like in the 50's. But now it's dropped back into the 40's again so I've contacted my PCP. The nurse writes back to say, "make an appointment". But didn't say with who. I find the whole medical system quite maddening. So wrote back - with who? It's a huge system and I was discharged from cardiology. I am turning into a very cranky patient.

And yet... I feel quite grateful. My dad's cousin had cancer when I did - and recently had a recurrence. He's in very bad shape and suffering a lot. In pain, heavy medication, no good treatment options. I pray for him. 

"Living Well with Metastatic Breast Cancer" Article

Every once in a while I get interviewed or blog for The Dana Farber Cancer Institute. I got a call a few months ago - and this photo was taken just days before my recurrence. I am ashamed to say I felt some smugness - they had both had recurrences and were on active treatment - and I was not - at that moment.

Beware, smugness.

Dana Farber Turning Point Magazine 2017

Reflexology

Oriental Foot Reflexology
Watertown, MA

A few weeks ago Pat (standing next to me ) from yoga class invited a few of us to go to reflexology. Sarah Jane and Laila (age 92!!) went also. I had never tried and actually I really don't like massage at all. I've gone a few times over the years but always get kind of creeped out by it - alone in a room with a stranger with little or no clothing. But I decided to go along anyway. I thought it would be basically a great foot massage - and I love that! Anyway, it was an amazing experience. We got the "spa" treatment. We all went into a darkened room and sat down on individual tables and put our feet in warm water laced with dried petals. We lied down on our tables with our own therapists. They put a cover over your eyes and then the magic began. It was incredible. They work on your whole body. I have never been so relaxed. I bought a 6-package and am ready to do this regularly. It felt medicinal/therapeutic. I thought it was an ancient lineage but it's not necessarily. It's considered alternative medicine but it's also considered "quackery" by some. It was "discovered" by an American doctor in 1913 then later developed further by a nurse in the 1930's and 1940's but thought to be tied to ancient Egypt and China. The history is kind of murky. But I don't care about that. It was great! Try it!

I'm doing fine. The further away I get from the doctors and appointments, the better I feel. I'm sleeping! Kande was here this week and gave me a dose of doxylamine succinate. From Costco! That really knocked me out and I woke feeling refreshed. But in general I'm sleeping pretty well. What a relief. The Vixen said that I'd probably adjust to the Letrozole which has been causing the insomnia. That may be. But now I have a few remedies in case. Paula also made some recommendations about foods with melatonin such as tart cranberry juice and almonds.

I'll see the breast oncology nurse practitioner in a few weeks. I'll also start on another medication - Zumeta - that's a monthly infusion. It's not chemo but it's used to prevent further bone tumors. I've taken it in the past and it was fine. I felt flu-like for about one day.

In the meantime I'm living the life I want. I feel strong, healthy and energetic. All good.

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. 

Beam Me up... Healing Beams of Light #1

LotusLand by Paula Keating

Finally.. what I consider my first real treatment. It's been a solid 2 months. Maddening to wait... and wait... and wait... although this is the norm for medical care even at one of the best hospitals in the country for cancer... with excellent insurance coverage... and a medical team who is trying their best to treat me...

This morning I walked over for my first radiation treatment.  In the waiting room I chatted with another patient. She was in for radiation to the brain... and doing chemo later today. She had her head wrapped in a long woolen scarf as she said she felt cold... but only half her head. We joked that maybe she could find a half hat. It's a different world in there... she told me that she had cancer 6 years ago and now has recurrence. She had 3 strokes after her surgery in June and had to learn to walk again. Unbelievable the shit that people go through. She might be a Jehovah's Witness as she mentioned that word several times. She was bright, smiling and so grateful to be alive. We blessed each other. We will probably meet again as radiation is 5 days/week. I will hold her in my metta prayers. She said she'd pray for me, too.

I changed into a double Johnny but left on my boots. What a look. I climbed up onto my little perch, the mold they made for me a few weeks ago and lay on my back. The doc came in and asked how I am. I said I'm more than ready to go as I'm having weird sensations on back and side of right knee. It feels like there are a few golf balls behind my knee - a weird sense of fullness. and the outer knee has an intermittent buzzing sensation. She said that I will have more symptoms initially, not to be alarmed. If I can continue to walk I'll be happy.

It took about 30 minutes on the table, arms overhead. They lined me up with a laser overhead and the two new tattoos on my low belly. Very high tech with these 2 thick arms rotating around me. The accuracy is within 1mm.

They offered a choice of Pandora music. I asked for Lady Lamb who is my new girl crush. When I did the last MRI I asked for Lucinda Williams but it made me dance too much inside the machine. So I went with something rather esoteric and not very danceable at all.

I got my schedule for the next 9 sessions. Not great considering I'm trying to work and am crazy busy with my hospital job and private practice. Tomorrow I go back in the morning with Monday off. The timing will be perfect as well go to Maine on 9/16 and I'll finish just in time.

The insomnia is intense. I'm not thinking about anything particular but my mind does not readily quiet down. I texted my brother to ask for some marijuana edibles. I always hated getting high - it was a terrible experience each and every time so I haven't imbibed in decades. But I'm desperate. I'll give it a shot and see what it does. 

The G's

LotusLand by Paula Keating

In late 2012 I attended a 7 day silent retreat at Insight Meditation Society in Barre, MA. I know, right? me silent for 7 days? not only that, you are not supposed to journal, take notes, read, even look at other people. The only  human contact is one individual interview with a teacher and two group interviews. and you practice from 6am to 9pm, sitting or walking meditation all day long. ALL DAY LONG. No reprieve. Other than your daily chore which for me was washing dishes after lunch. I loved that - there were other people and I could say, "hey, where does this knife go?" Anyway - I really couldn't stand one of the teachers. About halfway through the week, I was in a group interview with him. I was saying how hard the silence was for me, and he said something very snarky. I felt terrible, in a panic. Everyone filed out, and a woman I recognized from Cambridge Insight Meditation Center walked over to me and gave me the biggest hug. I could not believe it. I had never been so grateful. She probably whispered something to me like, "you will get through this. it's hard." or something like that. I don't really remember. Cheryl and I had been sitting next to each other for a few years by then at our local meditation center but we had never really talked.

Anyway, soon after that, our local teacher Narayan suggested that we all start a gratitude practice, the we connect with someone new in the group and that we figure out how to share gratitude on a daily basis. Cheryl and I turned to each other and said, "hey you want to be my gratitude partner?". We agreed that every day we would exchange 3 things we were grateful for in that moment. and we've been doing this daily for about 5 years now. It's a huge part of my daily life. We call them "the G's". Here are a few recent ones of mine. I will ask her if I can share a few of hers another time. The G's range from the silly to the sublime, from the cosmic to the personal.

Try it! Choose someone who maybe you don't know so well, and give it a go.
it's amazing how focusing on 3 things can change the tone of the day.
Even in the midst of this shit show I found things to be grateful for. Every day. Here's a recent sample:

1. Another fun deck party
2. 35 year friendship with Lulu
3. Barista skills (I make a good martini these days)

1. Yard sales. Just picked up a red leather jacket for $5.
2. strawberries and peaches with sweet whipped cream
3. comfy stretch jeans. How middle aged! LOL

1. A cool morning
2. Coffee steeping
3. going for a hike with the dog this morning

1. slept until the alarm
2. cozy hooded cape for cool morning
3. 48 hours until radiation

Sleepless in Brookline

I've been on Letrozole for 2 weeks now and it's wreaking havoc. I hope it's doing something positive because the side effects wearing me down. Already.

I haven't been on cancer medication since May 2014. I got a blood clot that was attributed to too much Tamoxifen so I went off it. However, in September 2015 I had another blood clot. Glenn and I were in the middle of a REALLY long training ride - about 70 miles . I noticed my left calf was enormous, and hot to the touch. We pulled over, googled blood clot and biked into the Danbury Hospital. Sure enough that's what it was - I was hospitalized from the triage nurse in the ER. After lots of investigation - is it cancer, what the hell is causing this - I was diagnosed with APLS, aka sticky blood. So I'm prone to clots. Since then I've been on a blood thinner which has been fine. No other medication.

Until now.

I've had intense hot flashes and significant insomnia. I'm tired! This morning I was awake since about 4:30am. A few nights ago I was awake in the middle of the night for hours. I didn't look at the clock as that makes it worse.

So hopefully this medication is worth it.
I keep wondering about the tumor in the left femur. It's not being treated directly. It doesn't give me any trouble, I have no weird sensation/pain there. I don't understand, exactly. Phil told me that the hormone treatment (plus the "smart drug" that I'll start after radiation) will eventually kill off the cancer cells and my bone will heal. Kind of hard to believe. So in the meantime I'm walking around with a tumor? Actually two tumors but the sacrum will get radiated starting next week.

This is all very strange.

Reiki

Over the last few years my sister has been training to be a reiki master, and she has worked on me a few times now. This will be another healing go-to. This morning she burned some fragrant Brazilian wood, used some healing water and went to work on both my femur and sacrum. I can feel the heat in her hands as she touches lightly. It's very relaxing, very soothing. Decades ago our aunt had a mass in her breast and was scheduled for surgery. In the meantime she went to see a Christian Science practitioner, and when she went for her last check-up before the mastectomy, the tumor was GONE. So the surgery was canceled and she has been totally good ever since. That must have been in the 1970's. The world is mysterious. Healing takes place on many levels.

I'll of course continue to follow the treatment plan at the Dana Farber. I'm counting down the days until radiation starts. 11 more days. Why the delay, who knows. Whatever. But I'm also continuing to have Thursday night deck parties, reiki from my sister and my daily yoga and meditation.

Another important piece is getting some help from my dad's cousin Jane. She is a spiritual teacher in Denver. I spoke with her this week and she is starting her prayers on my behalf. She also prays for everyone involved in the treatment - that they may have wisdom and be guided to provide the best for me. Powerful stuff. It all makes me feel really supported.

We spent the weekend on the Cape to celebrate my sister's birthday. We went to see Lucinda Williams at the Payomet Performing Center in North Truro. Wow, what an amazing show. We all woke up - after a very late night - singing Lucinda songs. She is my new girl crush.

Oligo club

Yesterday I went to see radiation oncologist Tracy Balboni. Another rock star. She walked in the room and said, "I hear you have been doing really well." That's an interesting frame. I think she meant that I was cancer-free for 9 years. I laughed - and said, yes I'm doing well - however, I'm back in for a recurrence. And she said, "yes, I imagine it's a bummer to be back with us again." Off to a great start. I liked her very much.

She specializes in Stereotactic body Radiotherapy (SBRT). She is the go-to person when you need highly targeted treatment. She told me that they would build a mold that I'd use when getting treatment. I envisioned a Rube Goldberg contraption but it isn't that dramatic. I was envisioning a full body cast from thigh to chest that they bolt to the table. More on that in a bit. She explained everything to me very clearly, very directly. I'll be doing a hybrid radiation, somewhere between traditional and SBRT. Because the sacrum tumor is right on a nerve root, they have to approach it differently.

Her fellow - another nice, smart guy - said that there is a new category of metastatic cancer patients - "oligo". I'd never heard that term. it's defined as having 3 or less tumors. and that's a club you want to be in! Both of them told me that the prognosis is very good. I read a bit on the internet - a very stupid thing to do for the most part - and some sites even used the word 'cure'. I just hope for a LONG remission. She told me about the bad things that can happen (nerve damage is biggest risk) but I'm down for this. She hopes the radiation will 1)shrink the tumor and2) heal the bone.

Last night I had another deck party - definitely part of my personal treatment plan.
It was a beautiful night.

This morning I went back for the planning session. I thought I'd be there all day but I was in and out in 1 hour including talking to a RN afterwards, a researcher (I signed up) and a voluntary blood draw. They gave me $5 gift certificate to hospital cafeteria. I thought that was funny.

So the planning session: I lied down on a memory-foam mattress kind of thing, then I was put into a CT machine for a few minutes. The foam mattress conformed to my back body. A physicist was there as he does all the calculations. I got 2 new tattoos on my belly. The whole thing took about 20 minutes. Lovely crew of people. Lots of conversation about liking my crazy hair. That also made me laugh. I met again with Dr. Balboni and asked her about why this tumor was not treated if it's been there since 2015. I didn't know I had a tumor on my sacrum until last month. Maybe I was told but I have no memory of that. anyway, she said that over the last 2 years the thinking has changed a lot about whether to treat preventatively. Even now it's controversial but the Dana Farber is moving in that direction. Previously they didn't treat a tumor unless it was causing symptoms. This is of course my interpretation -

I'll start the radiation treatment on August 31 and will have 10 sessions. Finishing just in time to take our vacation to Acadia National Park on September 16. I'm feeling really optimistic about all of this. I'm starting to have hot flashes again which means that the hormone medication is working. Bring them on, Glenn says!

Letrozole

I'm still trying to get my head wrapped around the dichotomy between how I feel physically and this recurrence. I feel great physically. Glenn and I are quite active and like to joke about whether to do a marathon, a bi-athalon or a tri-athalon on a given weekend day. Sunday was a multi activity day. We biked 16 really hilly miles, played golf and did yoga. That's not much mileage - our max this season was only 40 miles.This year our bike training has been a total bust. Between the weather, the trip to Paris, family events and now this, we have not gotten in the big miles. Usually we're doing about 60 miles by this time of the season. Then ride a century ride in September - 100 miles. Yes I'm playing golf! I even have several golf outfits. Hilarious. My only symptom is numbness on sole of right foot so I'm not at all limited in what I can do. Do I really have cancer?

Friday I started the anatase inhibitor Letrozole and so far I don't feel any side effects. It's a relief to get something in my system. After I finish radiation, I will add two other drugs. This one is to drop out estrogen. Even though my bone biopsy test showed that I am not hormone sensitive, The Vixen will treat me as hormone sensitive. Hopefully this works and the cancer stops growing. And actually shrinks and the cancer cells die off.

I was distressed over the weekend - why am I being sent to another radiation oncologist? Is it worse than they thought? At Lucy's encouragement, I called Phil who is The Vixen's fellow. He picked up the phone, "this is Phil". I love that. He explained that the specialist has a lot of experience treating people who need multiple beams. It's called conformal radiation - SBRT and I will probably do 10 doses = 2 weeks, 5 days/week. I asked about the term "palliative" which scared me. He said in their world, it means to treat a symptom. I have a numb foot due to pressure on my sciatic nerve, an impingement. So they treat with radiation to shrink the tumor on my sacrum. It was a reassuring call.

Thursday I go to see the new radiation oncologist, then Friday I have to get another MRI for planning and have to meet with the planning team. Fortunately I can walk to the hospitals. I often wonder what happens to people who live far from the best treatment centers?

New radiation plan

Even I am confused about how this is unfolding.
I was planning to be at the hospital this morning for the radiation treatment planning.
But yesterday morning - in the middle of a very busy private practice schedule - the radiation oncologist called (again, she herself call which I really appreciate) and said she has been thinking about my case and decided that it would be best to send me to another radiation oncologist who specializes in "palliative" radiation. Again, that term is being used. I have always associated that word with end-of-life care, pain meds only when people are dying. and I'm certainly not dying.

Anyway, Jen said that this other doctor has a "special interest" in treating people who have had radiation to a field and need it done again. It was a rushed conversation as I had someone waiting in my office. So another delay. I hope to get in to see the new person next week. I'll need another MRI for planning. Enough imaging already They have to build some kind of "cradle" - a mesh cast - so they can bolt me to the table to avoid any movement. Very high precision radiation, a different type with a lot of letters. I didn't have time or access to write it down.

In the meantime, Phil (The Vixen's fellow) called yesterday to say that I can start the hormone medication. I'll pick it up this morning. It's an aromatase inhibitor with a really long name. In September I'll go in to see him and The Vixen to start the smart drug.

So, are you confused? It's a labyrinth.
It's maddening.

I'm glad to get something today. It's been a long time since June 30 when the initial MRI came back. Give me an aspirin, give me vitamins. Give me something that feels like treatment rather than this endless delay. That said, of course I appreciate that everything is being considered. Like Momo said this morning, it's like a space launch. I want all the data before liftoff.

Last night I had a deck party. A few weeks ago it occurred to me that a great way to deal with this is to have a weekly get-together so friends can drop by. It was beautiful last night, perfect temperature. Turn on the lights, bring out the candles, gather around and have a glass of wine. Lovely. 

The plan -- for radiation anyway

I was at my hospital job on Tuesday and the phone rang - "No Caller ID". That's code for the Dana Farber Cancer Institute. I pick up and a voice said, "hey, it's Jen from radiology". That threw me for a minute. It was my radiation oncologist calling me herself. Wow! She is an excellent communicator. She discussed my case with bone oncologist, and he said no need for radiation of femur, it's stable (and presumably the medication will stop further tumor growth, shrink it, kill the cancer cells and bone will fill in with scar tissue - that's what Phil said, the breast oncology fellow.) So I'm taking that as "good" news. and she CAN radiate my sacrum. which is also "good" news.

[As a caveat, there is no good once you have cancer - but highly contextualized, there is definitely good and terrible. it's a different reality where relativity is the framework.]

The Vixen hoped that radiation the sacrum would be an option. It's tricky because you can radiate an area only once, or risk too much damage. but it was 8+ years ago. there will be some overlap of treatment fields but overall Jen thinks it's worth it. Currently I have numbness on part of my right sole of foot but if the tumor continue to grow it could cause foot weakness and pain. So I'm "happy" she can do it. I asked if she was good at geometry as a kid - and she laughed and said they also have a team of physicists who help with the calculations. It's super precise.

Tomorrow I go get measured - and maybe a few more tattoos. they use the tattoos (tiny dots - nothing fun) to line up the body on the table so the radiation is extremely accurate. And start on Monday. She still does not know how many rounds. 5 days/week. I'm guessing between 2-4 weeks. I plan to work as usual. Radiation is exhausting after about 2 weeks. Bone marrow is killed and that is one of the side effects. So I'll take to the couch if I run out of steam but plan to work through it. Psychologically it helps me to be "normal" - put on a pretty dress - and bike to work.

No word from The Vixen about when I start drug treatment. She told me that radiation is first, then drug treatment starts. But Jen said I can start the drug treatment anytime, at least the hormones. Maybe the smart drugs could wait. So that's undecided.

I was upset with The Vixen about a few things and did not feel heard at our last consultation. So I wrote an email through the patient gateway. A few days later I got a call back from the nurse - offering for me to see a therapist. That pissed me off. No offense to therapists - that's my profession.

So clearly I'm struggling with all of this. So many emotions. I think a lot about why we are given life - what we are supposed to do with our time on Earth . I went to church with my family on Sunday. Both Glenn and I took communion. I don't remember the last time I did that. It felt right, somehow. I grew up in the protestant church. What happens after death? We all want to live - and everyone says stay strong, fight this. It's like I now walk around, looking at people/life as an observer. Gaining knowledge - money - whatever. Certainly it's not about that. I'm reflecting on this - how to live. What's truly important.

Radiation Oncology weighs in

Yesterday I saw the radiation oncologist, Jen Bellen. She treated me back in early spring of 2009 for the chest wall/lymph nodes. I liked her then and I like her now. There has been some confusion about what's happening in my right hip for a while now - the last year or so. Her fellow came in first and did a great job of clarifying everything. There was the fall off the skateboard in October 2016 that caused a small fracture - and the first tumor  - and the sacrum. I learned that the sacrum tumor first showed up in 2015 and had not been growing until now. It's so weird how I "forget" about things. I was also reminded that I went in to see The Vix in June 2016 because my hip was bothering me. Nothing concerning showed up so again, I "forgot" about that, too.

Upshot is that the radiologist will treat my sacrum. Friday I got in for measurements and will start on Monday. She is not sure how many rounds - wants to think about it some more. I got blasted in 2008 so it's tricky to treat the same area twice. There will be some overlap and that is delicate. There are risks but it's a worse scenario not to treat. She is not sure about whether or not to radiate the left femur. She will talk with bone oncologist - the person I saw a few weeks ago. If she treats that, she said it will be 2 weeks (radiation is usually 5 days/week).

Glenn and I talk a lot about what is "good". People often say, "yea, great news". that's true in a way. Yes it's good that there are lots of treatment options. Yes it's good that this is not life-threatening. Yes it's good that 9 years have passed since the first time, yes it's good that it's "limited" to bones only. But really... no one wants to hear you have cancer. Again.

Last night I was awake for a long time, lying in bed and thinking. Really paying attention to how my body feels. I have no pain - just the numbness of my right foot. Mostly the heel and the 2 outer toes. Dr. Jen says it's sciatica due to pressure on the S1 joint. The nerve outlet is impinged by the tumor. The Vixen tells me she hopes to get me back into another long remission. I am not sure. From the beginning I've had a sense of foreboding. The day I flew to Paris - June 19 - I had the sense that something was really wrong. Strange, looking back.

I willingly, happily enter treatment. and yet - I'm pretty scared. I'm hopeful - yes. but I have a remaining sense of foreboding. Hard to know what to make of all of this. Hard to know where I am on the continuum of health/illness. Physically I feel strong, good. Emotionally I feel pretty steady with plenty of spikes of anger and fear. Some sadness. It's the intrusive negative scenarios that are bothering me the most. All these years of meditation and yoga have helped to train my mind and body... but it's a daily struggle not to "go there".

Recurrence after 8 years 11 months

It's been so long that Lucy had to do some investigation to find my passwords. This blog is like an old friend... no... not the right analogy. I always want to see old friends... this blog is like... this blog is what I did for 5 years of metastatic breast cancer. I never wanted to start writing this again.

I've had a recurrence.

It's hard to pinpoint the exact date since it's been an ongoing investigation since June 30.

It all started in mid June - a few friends (Lydia, then a few days later Lucy) asked if I had a slight limp.
I didn't even notice myself. I'm so active - I thought maybe I'd pulled my right calf muscle while biking.
I went to Paris for a week with Chris - I flew our June 19 - and while I was there my right calf hurt a lot with every step and my right foot was numb. I didn't say anything to Chris - I ignored it hoping it would go away.
I wondered if I had a blood clot from the plane ride.
I got home to Boston on June 26 and called my PCP immediately from the airport and got in to see her a few days later.
she said it was sciatica but ordered an MRI just to make sure it was NOT cancer.
but then something showed up on the MRI... and it's been down the rabbit hole again.

On Monday July 24, I got a call from The Vixen that the mass on my right sacrum is indeed breast cancer. It sounds weird to say that I have breast cancer on my sacrum but that can be how it metastasizes. Breast cancer tends to metastasize to bone, liver or lung. She sent me to a bone oncologist last Friday for what I thought was to determine whether I needed surgery on my right femur to avoid a potential fracture. What I somehow missed was that there is a cancerous mass there, too. That was news to me. The other ridiculous part of the Friday consult was that they x-rayed the wrong leg - the resident said the bone looked good - but the problem is there was a mix-up and the mass was on the left femur. they x-rayed it later. The good news is I don't need a surgery - the bone is stable enough. He just said, "don't fall". This all sounds very confusing and it was. Bottom line - I have a cancer recurrence with 2 masses - one on my right sacrum and one on my left femur.
I am not in any pain - my only symptom is a numb right foot.

This afternoon Lucy, Glenn and I will meet with The Vixen for The Plan.
Glenn and I initially saw her on July 11 - that day I got a bone scan and CT scan. The stupid part of that was that the bone scan results were not back yet so she didn't tell us about the mass on the femur. With the information she had at the time, she said that she could manage this, that it's not life-threatening, that I should not quit my job. I'm hoping it's the same prognosis now that there's this second mass on my femur.

So... I'm restarting this blog.
I'm hopeful. I feel strong and healthy.
and the love prayer wheels are spinning..
and I'm in good hands.