Traveling With Aunty

Cite Metro
Paris

I got back on Saturday from a week in Paris with 14 year old Zoey, my sister's youngest. What an experience!

Her first trip to Europe!
I took her sister Shayna when she was 11 - that was back in 2012.

We booked tickets in August - so it was a lot of anticipation for both of us.

We stayed in a shabby chic hotel in the Grand Boulevard area, Hotel Chopin. She loved everything.

I left Boston with a teenager and came home with a young woman.

We arrived the Saturday before and as we came up from our metro stop, the street was blocked for a massive End Domestic Violence march. She was wide-eyed. We dropped our bags and went back onto the street to check it out. We met a woman who carried a sign and had a conversation with her about French laws regarding women losing children to their abusive partners. Zoey was all in from the first moment.

After the day, she took over planning and kept a list of everything we had done and everything she still wanted to do. The things she loved the best were spending time in the ancient churches. Islamic art at the Lourve. Buying a fancy silk scarf at a market. And Thanksgiving lunch at the Paris Mosque. And she became an expert at getting us everywhere on the metro with multiple changes.

What an experience for both of us. We are BFF and I'm so proud of her.

Paris!

10" x 1)" in process

My phone isn't synching with computer. The image I wanted to use on my phone is from the film "Eraserhead". Remember that one? 1977? That's how my hair is looking these days. I love to get my hair cut when I travel so am waiting to have it done in Paris. In the meantime I definitely look like Eraserhead! Zoey, my sister's youngest and now 14, will be my traveling companion. Her brother and sister have been to Europe a few times already so I offered to take her. She signed up!

We fly out a week from tomorrow and will be gone about one week.

Last week I had to go back to the Dana for my monthly visit. It makes me very, very unhappy to go monthly now. How can it be all that different from going every 6 weeks? It is, though. I have to take time off from my hospital job because they (The Vix and Lauren) only see patients two days a week which happen to be my hospital days. And because I work part-time I am not eligible for intermittent FMLA so it all comes out of vacation time. And I'm not having that!

I'm psychologically OK for the most part. In the summer I was haunted by fear - of being unable to walk, being confined and in pain with death inevitable. But somehow I compartmentalize and don't think about it much. How? I work a lot. I'm loving my work. I play guitar every day and see Judy most Thursday nights to play (and drink!). I'm starting to play "breaks", ie bluegrass solos that are played after the chorus. She gives me "homework" - this time she went me a fiddle tune called "Old Spinning Wheel". She forbade me from looking at sheet music and learning it by ear. The other goal is that in 3 months, we will be playing breaks in harmony, playing along the melody line. I say, "yea, right" but then go home and practice and it's actually coming along.

And I'm in the studio regularly. I rejoined a gallery (Galatea Fine Arts) and will be in holiday show next month and a solo show in March.

So it's a good life, a blessed life.
My path with it's own particular challenges and opportunities.

Julie's Take

The Memory Project #12

Julie and I met in September 1978 when we were both transfer students to Beaver Country Day School. We were both fish out of water for our own reasons. So we have been BFF for 41 years now.

She outdistances Glenn by 1 year as I met him in September 1979.

Julie is a writer. I have saved all her cards and letters over the years because they are so poignant and articulate and beautiful.

Here's a text she sent yesterday about our visit to The Vixen:

"I really wish you didn't have to accept these mandatory, free tickets to hop on an emotional rollercoaster every so often. In general, the merry go round is the only carnival ride I can handle - but I'd go on any ride with you :).The Vixen is great. You are in very good hands. You inspire me to put faith and trust in the world, to accept and be OK with forces more powerful than ourselves, to receive the goodness of the world."

She always brings me to tears.
Amen.

Leaning into it

Women Take the Floor
MFA Boston

I took me a few days recover from Wednesday's news. While it's not terrible, it's not good, either. More cancer is never a good thing.

I saw one patient on Wednesday night. I was surprisingly able to stay focused. Thursday I had a very light schedule which was fortunate. The exhaustion really began to set in. But Thursday night as we often do, I went to Judy's and we played bluegrass and drank. I brought over a bottle of red for her and a few Trader Joe's IPAs for me. (I'm still a cheap date.) Playing music is a transformative experience anyway, and with her it's even better. She teaches me a new song every time. We work on singing harmony. Our voices work well together as she sings much higher.

Friday I totally holed up at home by myself. So unlike me. I always seek company. But that's been changing in general over time. These days I actually like and sometimes prefer my own company Making art and practicing music only happy when there's time and energy. By Friday night when Glenn arrived, I could feel my energy begin to return. I met a friend for an early dinner, and mixed us up some XZY margaritas (regional Mexican restaurant in Southwest Harbor serves them - tequila, Cointreau and fresh lime).

Yesterday we biked to the MFA to see "Women Take the Floor" exhibit with our old friend Tom and celebrated Robin's birthday at an intimate dinner party at Amy and Scott's.

Sorry if this is a little "dear diary". To write helps me put this together.
And today - maybe we will play tennis this morning and from 1-3pm I'm co-hosting a monthly bluegrass jam at the Brookline VFW. Last month we had 11 players - each time it will be a different group. I've been loving "Ill Fly Away", "Sing Me Back Home" and "High on a Mountain".

The lesson: let go more, find more flow.

"It's Not Terrible News"

Me and Jules

"It's Not Terrible News". That's what The Vixen said as she came in. I thought, oh oh. She asked how I'm feeling as that is a big part of the puzzle. Physically I feel better than I have all year. No more pain in my hip/knee from the hip flexor tendinitis. Am I breathing fine? Yes. No coughing, laboring to breathe.

She went on to say that there's a new spot on my 5th rib on the left side. A new spot on my lung (I already have an existing spot). Worsening on lumbar 4. And all the other areas that are already known.

At this point the tears well up.

Julie is holding steady, taking excellent notes.

I have to start going in monthly now for blood work. She wants to monitor the tumor markers more carefully. OK fine I'll do that. And I have to go back in 3 months for more scans. Shit.

None of which I wanted to hear.

Big breath. Speaking of that, she listened to my lungs over and over. I never told her that I am PPD positive. I was exposed to TB as a kid. She asked do I have records, was I treated. No idea! My dad was an old country doctor and if he treated me there probably were never any records. And he died in 1976. There ain't no records! She said that might be significant so will put that into her thinking.

She said that in a way things are the same they were in summer 2017.
It feels very heavy to me. And different.

I have to see a private patient tonight. Just one. Then I'll come home and mix myself a strong XYZ martini - tequila, cointreau, fresh lime. That's my personal treatment plan.

Macricostas Preserve

Macricostas Preserve
Washington, CT

I'm prepared as I'll ever be to get results on Wednesday. It's such a weird thing. I've been doing this for 11 years and you'd think you'd get "used" to it. But it's still so anxiety-provoking to wait for The Vixen to open the door in her dramatic way and say whatever she has to convey.

This time my good friend from high school, Julie, will go with me. She has never gone before. Glenn typically goes but this week he has a big deal meeting in NYC related to work so to ask him to go with me would be a lot. If I said, please, I need you, he'd go, of course. But I'm feeling confident that I'm OK so he hesitantly agrees to let Julie go in his place.

We spent the weekend in Connecticut which worked out well. Something about that 3 hour drive takes me into a kind of mini vacation mind set. We hiked 5 miles on the Macricostas Preserve which provides a beautiful view of Lake Waramaug. Sasha did great although she is definitely slowing down. And the next day she is often a little lame on her back leg. Aging!

Another positive development is that I can play tennis again. When I started back in the summer it was still hard to lean over to pick up balls because of the hip flexor injury. But this time I was able to play much more freely and do some drills on the base line, hopping side to side. This may dog me forever but if I can do what I want physically, then it's OK.

Stay tuned!

Acadia National Park

Vaseline martini glasses

We're just returning from our 4th annual visit to Acadia National Park. We stay in the same cottage on Spruce Cove on "the quiet side". Every year I get a new silver bracelet from this kooky vintage store that I love, and a set of martini glasses. Here's what I got this time. They are so cool and fun to drink out of. She called them "Vaseline" but they are also known as Depression glasses or uranium glasses. Uranium sounds kind of scary - but if they are/were sold, surely they are not radioactive? But given the amount of radioactive tracers I've ingested over the last 11 years, it can hardly make an impact.

Speaking of that, this Friday I get scans. With results the following Wednesday.

After A WHOLE YEAR!! The hip flexor tendinitis has mostly resolved. I could feel the psoas pull as I scrambled up and down big rocks and some tenderness on the knee but feel so happy that it's not really bothering me these days. So I'm going into the scans feeling confident that all is well and I'll go back on 6 months scan cycle. May it be so!

Celebrating the "non" news

March Farm
Bethlehem, CT

My dear friend Suzanne gave some sage advise a few years ago: celebrate after every medical appointment. And for the most part, I do! Yesterday I saw the NP for the 6 week consult. Blood work, physical exam. All is well. In another 6 weeks I'll get scanned again. If all is "stable", then the scans will be back to every 6 months.

I love Lauren. She is patient, takes time to explain things. At the last 2 consults with The Vixen, Glenn and I left feeling disappointed/freaked our that a few spots showed up  on my bones in April. When I asked specifically in July if those spots had gotten worse, better, whatever... she was vague in her answer. Not reassuring! She just said "let's call it stable" Lauren explained more clearly that bone cancer is different in that it's not a discrete mass like on the breast or liver. You can't measure it precisely at all. It's shadows. Sometimes the shadows light up more when the bone has healed, sometimes the shadows light up more when cancer is active and getting worse. WTF??


So Lauren explained that bone cancer is a "matrix" of fibers. Bones are not solid. Who knew!

She said that if you have to have metastatic breast cancer, going to the bones is the "best" scenario as it typically grows the slowest. She said that for me, it's not taken off like wildfire. In their view, I've only had one real recurrence which was in 2017 when I got all that focused radiation to my right sacrum.

I left her feeling better. She said - live your life. Renovate your kitchen (it's definitely time after living in my house since 1992). I'm planning again.

To celebrate, Judy invited me over to play bluegrass. I had a nice IPA beet (yes, on a school night). She taught me "West Virginia". I'm working on "I Still Miss Someone" by Johnny Cash that I learned at Podunk. I saw a flyer at the VFW hall where we often go to see jazz on Fridays. That the hall was open to other musical groups as well. I texted John who leads the Friday night jazz program and asked if we could play there too. He said yes! So I'm organizing a local bluegrass jam! Judy loves the idea, the space is free and available on Sundays.

Stay tuned!

Podunk

I'm back in my happy place, back into "denial". Call it what you will. My self-talk around the cancer is now: I had one small recurrence in June 2017 which was treated. Now I'm stable. Not quotes around that word. Just face value.

And with that shift, I can plan again.

This weekend we will go to my/our first bluegrass festival, Podunk. It's the 23rd season. This year it's being held at Goshen, Connecticut fairgrounds which is 2 towns north of Bethlehem. So it the weather is terrible or there aren't showers (I really don't know what to expect), we can get home quickly. We will camp! Last weekend we got out Glenn's gear and we're good to go.

There are 2 free workshops which I'll attend. The Werneck Method. There are concerts every night. During the day and late into the night everyone jams in the camping area. You wander around with your instrument until you find a group of players that are a good fit. We are friends with a bluegrass band in Connecticut (Sweet Cake Mountain) and I've met a few people through Judy and playing a few times with the Handsome Ladies.

On my bike commute I "work" on songs, ie I sing! And try to remember lyrics. At this point I'm working on 25 songs. I play the guitar every day even if for a few minutes. Today I work 9am to 9pm but even so I'll get home late and play a bit.

I've booked tickets to take my 14 year old niece Zoey to Paris over Thanksgiving.

My sense of time is opening up again. 

Physical Therapy "graduation"

Add caption

Last night was my final physical therapy session with Jocelyn. I gave her this collage.  It's 5" x 7" in an 8" x 10" inch black metal frame with white mat board. I think she liked it! We had our first session on November 22 and I was in so much pain that she recalls it was hard to evaluate me. I have faithfully done the exercises as she directed, twice a day at the beginning. I'm not 100% but maybe 95%.

Last week we were in Bethlehem for a staycation. For the first time since last season I was able to tee off on 9 holes of golf. Until now I had only been able to hit short runners or putt. And I was able to play an hour of tennis a few times. It's hard to run much on the court so I let a lot of balls go by. But if Glenn hits within my range, I can "paint the corners" pretty well. Very satisfying, both.

I have yet to get back on the road bike. Frankly, it scares me. I never want to repeat what happened this last year. Strangely, with all my "body awareness" from 25+ years of daily yoga, I had no idea I was injured. How could that be? But in the next few weeks I'll get back on the proverbial horse. Growing up in Iowa on the horses, I fell off so many times. My dad would force me back on and give the horse a whack to make it take off, just for good measure. Maybe that's a better approach than the avoidance of these last few months. I bike commute 35 minutes across town 3 days a week.

Jocelyn says to slowly let go of PT exercises but to transition to mixing strength and stretch yoga. I'm afraid  to let go of the PT, too. I've turned into a nervous Nelly. I grew quite attached to her over the months. I'm used to being in the healer role - very interesting to be the patient and to allow the feelings of gratitude, dependence, wanting to please her, so many feelings. To be remembered (hence the gift), to be a model patient. I can always go back. But it's a loss. And also a huge gain. I did it! Done!

Scan results from July 8 - "Stable"

Cold Storage Beach
Brewster, MA

I got my results a week ago today - the 3 month follow up after the questionable scans in April. The Vixen said all was "stable". This should be reason to celebrate, right? But rather surprisingly, I found myself really angry. Angry at myself that I'd "wasted" the last 3 months tied up in knots with fear about whether the cancer was taking off and would take me out. Anger that I'd let that fear overtake my thinking. I felt I could not plan anything  - WHAT IF? I'd wanted to commit to my first bluegrass festival. To camp out in Goshen, Connecticut for Podunk Festival. To do nothing but music all weekend. But I found myself unable to commit. So this morning I'm going to buy us a camping permit. The event is the weekend of August 11.

But the aspect that was most surprising was my anger about having cancer at all. I was super pissed off. Why me? Why am I a walking time bomb, waiting for the bad news? I've kind of come to a better place about it. But looking back, was I ever really angry about this? God, I should have been! So I'm working on my thoughts - trying to get back into a place where I'm not thinking about it all the time.

We spent the weekend in Portland with friends and the inevitable question of retirement... where do we want to be? what's the plan? In a way I still can't believe that my peer group is that OLD! My brother has 3 grandkids for god's sake!

I'm nearing the end of physical therapy. I've been going weekly since November. Glenn and I have been playing tennis which would have been unthinkable even a few months ago. Next step is to get back on the road bike which I'm afraid of! I really, really don't want to get injured again. But Jocelyn says to start slow... which is hard to do! 

58!

Nutty Cardamom Bundt Cake with Bourbon Glaze

I celebrated my 58th birthday on Tuesday May 28.

Glenn made me this amazing cake which I shared with a big group of friends. We were together for the long weekend, but living separately is especially challenging when something special falls on a weeknight.

Tuesday morning I got to work and opened an email which I thought might have been phishing. It was from another hospital employee, asking about a painting that was in a staff show. So I called the woman's office and she was legit! Her secretary confirmed her email and cell phone number. So I texted her and sure enough she wanted the painting. What a great gift!

Then in the evening 16 of my dear friends showed up on a cold, rainy night for Thai food at 8pm. We had a raucous time - great drinks, food and friendship. Feeling the love!

Jocelyn

Jocelyn

Here's Jocelyn, my physical therapist. We know each other pretty well, having met weekly since late November. In fact it's been exactly 6 months as my first appointment with her was November 22. As it's a hip flexor injury, she has worked her way up and down and in and out of my left groin. That's pretty intimate!

I'm still so surprised that it's taken this long to recover. And I'm not fully there yet. I can now bike across town 3 days in a row without too much trouble. But I can feel it as I'm biking, some pull on the left side. What's weird is that the sensations are different - sometimes in the sacrum, sometimes the IT band, sometimes the thigh. And if I sit too long, my hip aches. I can sleep through the night now without pain. But with a pillow between my knees.

We're talking about finishing up the PT at the end of June. Then I will have to continue to incorporate the exercises into my daily yoga routine. The next scans are July 3 - a Wednesday - right in the middle of our stay-cation in Connecticut. With results the following Monday. That will be a nail biter.

Aunt Marty Turns 90

Aunt Marty at 90

Aunt Marty turned 90 on May 3. Last Friday. I spent the day with her in Chatham. It was wonderful. I made a chocolate whisky bundt cake that was an absolute failure. I ran out of baking cocoa so "substituted" baking chocolate bar. It didn't release from the pan but she deemed it "wonderful". That's my aunt. Always appreciative. Always positive.

I asked what she wanted for a gift and she said potted parsley for the table. Again, so her... practical and decorative at the same time. We went out for lunch, I played and sang for her. She loved it - I loved it - I love her.

We're having a big family party on May 18 to celebrate both her and her husband who turns 90 on May 30. I'm gathering ideas from everyone and writing a song to sing to them - about all the funny things that have happened over the many long years. It's easy to think of stories with my aunt but we are all stymied to think of positive stories that involve him. He's so demented at this point he may not even understand what's going on but I'm trying to include fun memories of him, too.

Today I met with the NP. I was so worked up before the consult that I binge ordered 4 pairs of shoes as I waited. Oh well. She had a positive message - explained more about the last scans inconsistent findings. When the CT and bone scans don't match up, it's actually a good thing. She said that The Vixen was not very concerned last time, but also could not say everything is clear. So she (Lauren) said to not worry too much. It's probably fine, and the pain I feel is lingering hip flexor tendinitis/IT band. It was definitely a relief. Although there was absolutely no new news.

Tomorrow I'm going to see my physical therapist's supervisor. He has more experience. Just to make sure we're on track. It's been 6 months of PT and I have plateaued. My left hip/outer thigh and knee are still uncomfortable and painful at times.

No long distance bike training this season, I'm afraid. I'm commuting 35 minutes across town three times a week an that's about as much as I can tolerate.

PostUnderground

PostUnderground
Brookline, MA

PostUnderground? It's the best kept secret in town. Back in November, the local commander of the VFW hall decided to start a jazz program in the basement of the hall. Fridays starting at 8pm there is a house band - they are good! They play jazz standards - the kind of jazz that I can relate to, i.e. melodic. Cheap, cheap drinks although the barista doesn't have martini shakers or glasses. So it's kind of everything on the rocks. AND - free food. We went with Gayle the first time and she loved these chairs in the hallway. We went again last Friday with a few friends and had a blast. This will be on our Friday-night-in-the-city go-to. Great fun.

I'm getting back to "normal", i.e. not worrying so much about what might (or might not) be happening with my bones. I have asked for a consult with my physical therapist's supervisor to make sure we're on track with the right set of exercises. My PT is just out of school for about a year and she's awesome - but not that experienced. She will be at the consult so we can all learn together.

I'm definitely better but plateaued for a bit, then regressed. Before the scans. It's impossible to know what is anxiety and what is "real". But knowing a recurrence could be in process is kind of crazy-making.

It's a long wait until July.

Shades of Gray

PostUnderground
Brookline, MA

Not that kind of Shades of Gray. But scan results. I got scans done on Friday. "Routine" 6 month scans. CT of chest, pelvis and abdomen. Bone scan head to toe. The usual.

Results yesterday. The appointment was 1:30pm so it was a long weekend. (With lots of fun distractions such as a new jazz club in the basement of the local VFW hall. It was super cool and plan to go regularly.) Glenn went with me.

She said, "CT results are perfect but a few things showed up on your bone scan."

Here is the report:

1. Scattered foci of increased radiotracer uptake in the bones, consistent with known bone metastases. Most are similar to 10/5/18. There is focal intense radio tracer uptake in the inferior left sacrum which is larger in extent and more intense compared to 10/5/18. There is a new focus of mildly increased radio tracer uptake in the left mid femur.
2. Subtle new focus of increased radio tracer uptake in the posterior aspect of left L5, indeterminate.

What does this mean? Even more puzzling, the CT scan did not have the same findings with the L5 or the sacrum. Nothing showed up on the CT scan at all. An CT scan does not go as far down as the femur.

The Vix said she doesn't know. Could be inflammation from ongoing problems with hip flexor tendinitis although that is MUCH better. I've kind of plateaued at 95% recovered.

We felt flattened after the consult. It's not terrible news. It's not good new. It's indeterminate. I just went to sleep for a while as Glenn had to get back to Connecticut. This is crazy making. She is not making any changes to treatment - hold steady for now. I'll go in monthly rather than every 6 months for blood work and quick visits w NP. And will get scanned again in 3 months rather than 6 months. A tighter followup schedule. But she's pretty hopeful that it won't get worse or ideally it's simply inflammation. 2 full pages show other areas that light up - a lung nodule, known metastases. And lots and lots of normal aging degeneration.

On film I must look like a disaster but in day to day life I'm my normal fun-loving self. Growing a fig tree, playing my Martin, exploring the South End on bikes, discovering an under-the-radar local music venue.
It's a strange thing.

Every Other

The Martins

I saw my physical therapist last night, and I have graduated yet another step. I can now do either PT or yoga once a day! No longer twice a day. That feels like such a relief. Every single day since November I've dutifully done my exercises twice a day - with no exceptions. There have been times when I've been on my mat at 10pm but determined to get it done. And I'm still not perfectly recovered. So frustrating. Biking across town for my commute - I can feel it a bit on the bike and then once I get off. She says it's a matter of now strengthening the front of the leg and hip flexor. We've spent months stretching and a lot of strengthening, now the ratio will switch.

Here's a picture of our Martin guitars. We leave them in their cases when not playing them, but come warm season they can stay out. Mine is the dread nought on the right. I'm still looking for a name and am circling back to "Karl" as in Karl One Knausgaard. I finished the 6th and last in his series "My Struggle" just this morning. Although I have to confess that I skipped about 500 ages of the middle section. His musings on literature, religion, Hitler and who knows what else. I do intend to finish but ran out of renewals at the library. It was not a very satisfying end because I know a lot happened after he finished writing in 2011. But what a read!

Martin D18

Music Emporium
Arlington, MA

On Friday I drove to Newburyport to meet an old friend for lunch. More on him another time. (Butch is launching a distillery business and gave me samples of 3 of his bitters. Wow. It brings cocktails to a whole new level. Hand-foraged. Tulip Poplar Bark. What???)

I was also expecting to meet a guy who is selling his Martin D35 guitar. We had a major confusion - I thought he was driving to Newburyport, he thought I was driving to Portland, ME. I had $2200 in cash as I had intended to buy it. Anyway, on the way home I swung through the Music Emporium where Glenn bought his Martin OM28 a few weeks ago. I thought it would be helpful to play a bunch of guitars (again). I picked up the Martin D18 and knew - it's the one! So the price almost exactly what I had in cash. And I bought it! The "D" stands for dread nought - it's a big body with a big BOOMing base.

On Saturday we went to a bluegrass jam in West Concord. It's for musicians, no audience. You play in the round - meaning that one person chooses the song and the key and sings the lyrics and chorus, and everyone else sings the chorus. There's also a break after the chorus, and one of the good players does a solo (that would not be me). I was the only woman player and everyone else was really good. but they were very supportive and patient and it was a blast.

Now I"m adjusting my work schedule so I can finish by 7pm on Thursdays so I can jam with Judy every week. I've got the music bug!

Guitar quest

Mr. Music
Allston, Massachusetts

Recently I abruptly announced to Glenn that I was going to change my life. He drew in a sharp breath, waiting for a bombshell. The sea change is: switching arm full of silver bracelets to the left side (rather than the right). Why? Easier to play guitar. He cracked up.

I'm so excited about playing music. I started taking lessons again a few years ago with a wonderful singer-songwriter. But she's way across town and inclusive of lesson and travel time, it took about 3 hours. Everything changed when I met Judy last summer. She is a neighbor, mentor, teacher, friend but she likes to call herself my coach. She is 78 and has played music since she was a teenager.

We get together a few times a week and play and sing. Since I was a kid I loved to sing harmony. But never thought I "could" so never pursued it. Until now. She plays guitar, bass and banjo. Now and then we play the few songs I've written and she totally rocks out on her electric bass, but mostly we play bluegrass/traditional music.

She makes me CDs of songs we work on. I also bought a book called "Parking Lot Pickers Songbook" and am going through that alphabetically. She wants me to memorize lyrics as well as the music. In bluegrass, no one uses sheet music. It's all from memory. I went to a jam at her house a few weeks ago and one of the players said she knows at least 200 songs. Wow! I have 2 memorized.

So now I"m on a quest for a new guitar. This take up a lot of time! Glenn got a new Martin recently. So I'm spoiled by playing that. Right now I play on a $300 Walden but am looking to upgrade to a really good one.

I saw the oncology NP this week. All is well (although cancer never showed up on blood work) but hey, I'll take it. Will get scans in 6 weeks. In the meantime I'm continuing with physical therapy and am 98% recovered. I'm "allowed" to bike to work every other day. This week I went 2 days in a row and really felt it. So clearly she knows what she's talking about.

The bike trainer

I've gone from 100 miles to 10 minutes. In 4 months. We did our century ride on September 8. And this is where I'm at. On Glenn's bike wearing his shoes that are too big. Oh well.

I saw Jocelyn my physical therapist last night and she said that things continue to improve. She replaced a few exercises that I would do lying down with a standing version. She asked me try something in her little gym that was painful, so we will hold off on that. In the meantime I'm riding a bike 10 minutes a day since Thursday. It feels great! But I dutifully set my timer for 10 minutes and stick to that. She says that I should be able to commute again starting next month.

If only!

Baby aspirin

Encaustic with shellac burn

Baby aspirin? what kind of title is that?

I just had my annual visit with my hematologist (yes, I have one of those, too). He told me about 3 recent studies and clinical trials.

But specific to me, he said that I am 80% likely to have APLS which is an autoimmune disorder that causes blood clots. I have known I've had this since fall 2015 but somehow I didn't appreciate until today how serious this can be. I thought - I'm on medication - all good.

He said that if I had all 3 indicators for APLS, that I'd be at super high risk for not only blood clots but high risk for heart attack or stroke. Crap! But I have tested inconsistently on all 3 measures. One time I had all 3. The other two times I didn't. If I had all 3 consistently, I'd be in a totally different risk category. But 80%? still very scary.

There are a few options - but he recommends to stay on the Xeralto and add baby aspirin. That can provide some protection against heart attack and stroke but puts me at risk for additional bleeding.

This consult got me quite alarmed. Maybe I'm not expressing this very clearly.

What terrifies me the most is surviving a stroke. And being disabled partially or totally. I actually am OK with dying - much better scenario. Lethal heart attack - fine. But to be rendered unable to function fully - I am going to review my health care proxy to make sure I say don't revive me if something catastrophic happens.

And on a more positive note - I was on the bike again for 10 minutes this morning, whizzing around the neighborhood. Yesterday in spite of sitting through 8 hours of therapy, I was really comfortable. I'm so grateful that the hip flexor tendinitis is resolving.

And this other shit ...  hopefully I can move back into "denial" fast.

And now... the bike!

11"x4" encaustic painting

I saw Jocelyn my physical therapist on Monday. We discussed how it's going to reintegrate yoga. I continue to make progress. She hasn't had to adjust me in a few weeks. Overall I'm feeling much better. Mornings are no longer agony. But sitting at work is a big challenge since I work 10-12 hour days. She taught me "engaged sitting" which is strengthening the core and engaging buttock muscles while shifting slightly onto the tailbone. And using lumbar support. I just started to work with it yesterday and I think it's helpful.

But as I was leaving she said - you can start on a stationary bike 10 minutes per day. Music to my ears! I don't belong to a gym so a trying to figure out how to access without paying $20 per session. We have a bike trainer in Connecticut so I may end up bringing it back to Brookline.

I met with oncology NP Lauren on Monday and everything looks good. I continue to have blood work every 6 weeks with a mini NP visit. Zumeta infusion every 3 months. And scans every 6 months.

All good!

Back on the Yoga Mat

12" x 9" mixed media collage

I was back on the yoga mat this morning for the first time since I started physical therapy on November 21. It feels like a lifetime - but it's only been 6 weeks. My therapist suggests that I do yoga once a day and PT once a day. To start to integrate it back in again. I've been practicing yoga daily since 1993 - which = 25 years now. I felt like a beginner all over again. I did the most basic poses - and it was a struggle! While trying to avoid poses that flex the groin. Jocelyn did a great job in suggesting what NOT to do as she's not a yoga person but she was very clear about what to avoid.

Happy, happy, happy.

It sounds like hyperbole after all the health situations I've had over the years. Cancer for god's sake. Lots of surgeries, etc. But this was/is the most painful thing I've ever dealt with. Going back to work yesterday was tough as my job is sit, sit, sit. Over vacation I basically avoided sitting down unless I had to. And I've been off the bike for 3+ weeks now.

I am a poor advise taker/rule follower but I have been following her instructions PERFECTLY. Nothing more and nothing less. And it's working. And I have never been late to an appointment. And it's working! I'm actually in no rush to get back on the bike. One step at a time.

2019

Bethlehem, Connecticut

I really don't make New Years resolutions. But what I always hope for is that I can have another year of good health. And specifically - no ER visits and no surgeries!

Glenn and I spent the holidays in Connecticut. I took this picture behind the house. Our land abuts 300 acres which is owned by a private school. We walked every day at least an hour with Sasha.

My tendinitis seems to be on the mend. I have not ridden a bike in about 3 weeks now. Maybe that helped? I'm doing physical therapy twice a day at home and will see my therapist today. I haven't seen her in 2 weeks. It was "less bad" for a while but now it's much, much better. Finally. This has been a very frustrating and painful experience. It has been so debilitating that I really think I'm done with century rides. Last September Glenn bought a gravel grinder in Maine. I may do the same - sell my road bike an just tool around on back roads on the gravel grinder.

The highlight of my time in Connecticut was New Years Eve. We got invited to Alan's birthday party/New Year Eve party. He's a bluegrass player - mandolin. I was told to bring along my guitar. And I played for 3 hours straight. There was another guy who played both guitar and banjo, and a woman who played a modified mandolin - on a ukulele body.

I'm grateful to be recovering - finally - from this tendinitis.
Otherwise all is well!