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".