When art becomes the lesson, messages in the woods, and the importance of saying goodbye on purpose

Check out the defiance in her eye.

After attending the Memorial Day parade in the littlest city in the country (Vergennes), I was met with this beauty back at Greg and Mary Beth’s house. Greg had spotted her at the booth across from his at the Rhinebeck Antique Show. He struggled with whether to get her for me, her scarring a full on reminder of what’s coming.

I am so glad he did. She is looking straight at me, daring me to flinch, baring her scar with strength and honesty. She also has dirt all over her legs which I do too from the daily weeding that is my meditation. My broken sculpture muse.

Equally moving was his card: “Still Strong, Still Beautiful, Still Perfect”. Personally, I think of these more as moving targets but so appreciate the brother-love and confidence as I fly past the bull’s eyes, hit the outer rings, fly completely off the mark just missing passersby and occasionally nab an inner ring.

My message in a bottle was bolted to a glacial erratic

Spotted in the woods on a walk at Lake Willoughby

Walking the old Rte 5 with the dogs along the east side of Willoughby, the trees were still sparse enough in their leafing out that I spotted this massive rock with a tablet nailed upon it. As most of the homes are 2 season and presently uninhabited, I walked down a driveway and through the scrub to peer more closely and was met with this message:

“One who never turned his back But marched breast forward. Never doubted clouds would break Never dreamed though right were worsted wrong would triumph held we fall to rise, are baffled to fight better, sleep to wake.”

Clearly I was initially taken with marching breast (or lack thereof) forward. But as I read on, it occurred to me how apt these words are to the way I live my life. Always sure that I can actively help right triumph, at that moment I was launched back to my childhood at Ragged Mountain where Lori and I would walk the nearby roads and brook collecting garbage that had been strewn there sure we were making a difference in the world, and later, as teenagers, repeatedly removing all the surveying tags in the woods where they planned on creating another housing development, sure what we deemed wrong would never triumph. Suburban guerrilla warfare. Lori went on to be a cop :).

I am an eternal optimist (mostly… can you be mostly eternal?). Though it’s hard to maintain such an outlook in these days with he who will not be named in my sacred blog, along with his hard to call anything but evil OWM cohorts, the kindness I experience everyday (even sans “the kyansah”) fills me with a perhaps unfounded faith that it will all (mostly) be okay. Sometimes that makes me feel just plain stupid as we careen toward Armageddon but I’m sticking to it. So apparently Charles Foster Kent, an old Testament Scholar, and I share that similar outlook on life. I continue to fall to rise, am baffled to fight better, I sleep in order to wake. Okay, actually I sleep in order to dream and then eventually wake after dozing for a few more minutes in order to see if I can dream again, press snooze (I suspect Charles didn’t have snooze), til it’s just too clear the dogs need to go out… THEN I wake.

But from where is this optimism born, and is it just silly at this point? One wonders.

Saying goodbye on purpose

“We had a Realtor’s Board meeting dedicated to Mary where we toasted her, but today is what really provided closure”
-attendee at Mary Fry’s Celebration of Life

This past Saturday was the Celebration of Life for my friend Mary Fry. Sad, joyful, funny, irreverent, it was a testament to her complexity, to the numbers of lives she touched, the love she put out there. And it was important. Because she was important. Many of us are in this weird place of not having the old traditions to fall back on when we lose someone. We are left with crafting our own, perhaps at our least creative time because we are so overcome with grief… unless we talk about it with our family and friends ahead of time, unless we take time to process before we quickly put something together to “put it behind us”.

Oh, I’m sorry. Was I proselytizing about MY BUSINESS and the philosophy from whence it came??? Yes, Mary’s celebration was my maiden voyage as a Celebration of Life Celebrant and Planner for Funerea Ltd. Co. I learned a whole lot logistically doing this Celebration (thank you Mary, typically giving pointers right to the end). The rest was evidence for my belief in how important saying goodbye consciously is, crying the tears, laughing the laughs, and doing it in community.

An update on the Kyansah…

…Seeing as this blog is supposed to be about my epic journey with IBC and how parenting one’s cancer out the door is an alternative to fighting a war with your body (let the docs do that).

I had my first dose of the trial drug Eribulin yesterday. Unlike the hours that it can take to infuse many chemotherapeutic drugs, Eribulin is pushed over 15 minutes and DONE! Which would have been swell had the whole of DF not been running 2.5 hours behind on appts. Lotta sitting in waiting rooms people, which I would put out there is way more exhausting than training for a marathon even when you have Dee as your Lexulous partner (she apparently hasn’t learned that you don’t crush your opponent when they have cancer, she’s a cold one, that).

And when one can stay awake, it is totally entertaining to listen to all the Boston accents. It’s crazy how just 3.5 hours south people speak a completely different language.

So, the cancer. Doc O. was pleased with my progress: “oh, your breast looks great, really great, just beautiful.” Why thank you Doctor! She reassured me that just because I mostly (anyone else counting how many times I have used mostly in this post?) feel almost fine, the therapy is doing its job and keeping my cancer in time out and even ushering it outside to the playground (the doors lock behind it, a sad picture I know, but there are playground monitors who are really nice).

As for what I am doing personally to parent these toddler cells? We walk everyday in the fresh air and play with the dogs, we eat whatever sounds good (I am the only person on the planet to gain weight with cancer but I don’t care b/c I am bigger than that (hahahaha, cracking myself up again)), we accept help when it is offered, we nap almost daily (luckily I had all kinds of training in that prior to diagnosis), we weed to meditate (2 birds don’t you know), and we cherish.

Oh, and even when I willingly go down the negativity spiral, like when I received an insurance denial for my first chemo treatment on Friday, someone puts their shoulder to me and pushes me back out. I called the insurance all ready to have a fight and talked to Donielle who said, Oh I am sure that was a mistake because we are just about to send payment on the following treatment. Let me follow up on that. It will probably take 2 weeks b/c we are really behind right now but I WILL call you back. If you receive a bill, just call me at this number. “Donielle, are you related to someone named Lisa at the Vermont Social Security Office?”

The better angels of our nature.

Disconnected thoughts on what has been a hard year.

Maggie, Memphis, and Becca (l to r)

Today is the year anniversary of the death of Maggie’s dear friend Becca. A simple accident born of her love of life and adventure. And accident that coursed over 5 days as donors were found for her many magic-infused and life saving organs that would ultimately be given on her 22nd birthday. Five days which would only be the mere beginning of lifelong grief for her family and friends. A simple accident that forever changed the trajectory of so many lives.

Three months later Becca was followed by Amanda, long time friend of the Homer kids (hers would be the 8th death Will would experience of friends/family over the past 2.5 years). Another young woman so in love with life and filled with sass and laughter. A simple accident born of love of friends and adventure and a limousine gone wrong. Trajectories.

Olive and Amanda (l to r)

Mama Bears and Lionesses

And then a couple weeks ago one of my best friends’ daughters was diagnosed with metastatic breast cancer at age 32. I am caught between screaming and melting into a puddle. Enough is efuckingnough.

What I realized in the midst of that latest news, though, was how lucky I am that I am the one with my cancer. Feeling the pain of my friend overcome by the deep worry and helplessness for her daughter showed me how completely different, and so much worse, this experience would be were it to be Maggie (or Jack or Will for that matter) with breast cancer. I can deal with me.

Feeling the pain to the degree possible of Becca’s and Amanda’s families again puts my own situation in stark contrast. As parents of young children (oh, hell, any aged child) we try to make the world the safest place we can for them. We become Mama Bears, Lionesses, Papa Bears, and Tigers. That may be one of the greatest disservices we provide as well as the one virtually impossible not to try to provide. As so many of us in my relatively small circle have experienced this year, the world is not a safe place, nor was it ever promised to be; it is full of accidents of adventure, of limousines, of DNA. And as Mama Bears and Lionesses, we are met again and again with our helplessness to help our children as they go through their trajectories of pain, loss. I can deal with me.

And again the message would appear that over and over again we have to comprehend the impermanence of our world (I hear our Buddhist monks friends have this down). Live now, live now, live now and now. If we ignore it, it socks us in the gut again and again. Despite my greatest efforts to internalize this, I live in constant fear of the other shoe falling for my children. How many fucking shoes can there be? Apparently an Imelda Marcos closet full.

Resilience and Cellular Level Support

Lake Champlain

And yet we get up every day in this new and different trajectory. And people meet us with love and support, they wrap their arms and their hearts around us. Occasionally there is a break in the fog and a landscape comes into view. As I have said many times in this blog in one way or another, I am blown away by the love I have received and continue to receive as I wander through this new life. It feels cellular, granular, foundational, so good, so reassuring in a world that feels so awry in so many ways. Daily, I ponder the disconnect between this granular experience on a day-to-day basis in my life and where the break occurs in all of this that allows our world to spin toward disaster. How does this incredible love and goodness dissipate as it flows up the societal chain? Where does it go? I am only one of many thousands, millions of people who have people reaching out with love. How is it that foundation doesn’t strengthen the overall structure of our world? How can we make it be so?

Focus on the Cessna and the Good Guy Pilots

So, with these alternately dark and light thoughts, I turn my focus to part of that cellular network that bouys my life right now. PALS: Patient Airlift Services. This is a northeast based volunteer organization of pilots who love to fly donating their time and airplanes to transport people with various illnesses (say IBC) to their distant appointments.

Last Sunday my sister in law and good friend Dee and I met Mike the Pilot at Heritage Aviation in Burlington. After a huge rainstorm passed thru, he and his friend Nick, along for the ride, brought us out to that teeny weeny plane you see pictured here. We climbed inside (Dee saying: so that storm that just passed through, going south and east? aren’t we going to catch up to it? Mike replying: yeah, but we’ll find a way through. Dee: you mean like a worm hole?) and off we went. Mike is an incredible pilot, completely knowledgable, calm, and instructive as we flew through clouds and rain on instruments only. We all had earphones on, so Dee and I could hear BTV talking to our flight saying things like “You are coming up on 2 extreme cells in about 5 miles” whereupon we’d tap Mike on the shoulder questioningly and he’d turn fully around in his seat and explain why that wasn’t a problem (Mike, shouldn’t you be looking at your instruments?)

Camel’s Hump as we head into the storm.

Then we arrive at Logan and because we are a compassion flight (compassion flight 623 for that matter), they clear the decks to allow us to land; this little mosquito of a plane parting the red sea of super jets as it were. Amazing. And, we find out that not only is Mike donating his time and the plane rental, but the fuel as well! And he wouldn’t accept a donation toward that. So, if any of you are interested in acrobatic flying, he has a business called Upside Down Vermont! The man can fly (and he plays for the Fairfax town band, all brass but Tuba is his instrument of choice, of course).

Kindness.

And then there is this…

My good friend Rebecca’s wonderful husband Matthew is doing the Pan-Mass Challenge, a 192 mile bike ride across Mass (hence Pan-Mass) to raise money for Dana Farber and cancer research. And… drum roll… he’s doing it in my honor as well as in honor of his aunt who died of cancer way too early. If you are so inclined, please support his efforts here and read about his goals and reasons for participating. Thank you Matthew. I am truly touched and privileged to be honored in this way.

And so we come to Indra’s Net

A long time ago when I was a working Hospice Nurse, I attended a conference in NYC (in the World Trade Center for that matter) on the Art of Dying. During that conference, one of the presenters talked of Indra’s Net, here explained by Wikipedia:

“Far away in the heavenly abode of the great god Indra, there is a wonderful net which has been hung by some cunning artificer in such a manner that it stretches out infinitely in all directions. In accordance with the extravagant tastes of deities, the artificer has hung a single glittering jewel in each “eye” of the net, and since the net itself is infinite in dimension, the jewels are infinite in number. There hang the jewels, glittering “like” stars in the first magnitude, a wonderful sight to behold. If we now arbitrarily select one of these jewels for inspection and look closely at it, we will discover that in its polished surface there are reflected all the other jewels in the net, infinite in number. Not only that, but each of the jewels reflected in this one jewel is also reflecting all the other jewels, so that there is an infinite reflecting process occurring.”

This is how I picture Heaven; with Becca, Amanda, Mom, Grandpa Bill, Grandpa Bob, Cash, Mickey, Taliesin, and all the others we have lost inside those jewels, reflecting and radiating love and peace. And that will have to do for now. And it does.

That’ll Do Vermont

photo by David Hamilton

Those of you who have lived in Vermont or spend significant time here will understand the title. It may be said with a roll of the eyes, with a sigh and a nod, or with a pointing finger while you look around frantically for someone to share it with. It is borne of the energy it takes to deal with all the fecking beautiful moments. Seriously Vermont? AGAIN? It’s actually why we have mud and stick season because we’d all just explode if we didn’t get some rest.

And then there’s the Social Security Office

A couple weeks ago, I decided it was time to apply for Disability. Lucky for me, IBC is one of the diseases that Soc. Sec. considers worthy. Luck is perception. So of course since the last time I went on to the SS site I have changed my phone number which means I have to wait for a secret code to arrive in the mail. Said code arrived and on Friday I sat down to work.

First page, typical deets, name, ssn, place of birth, what are you applying for… Second page similar, then, bottom of the page, this:

  • (pretend this dot is a checkbox) This disability will be the cause of my death.
  • (same) This disability will NOT be the cause of my death

Ouch. That seems a little strong. So, I go with positivity (I hear it cures cancer) and check the second. Then I think… will they not give me disability then? And, who knows, it may well be so (a very long way off kids). So I check the second. Then this pops up:

Why? What are they going to ask? Will I be in trouble?
It’s the government after all .

So, it’s to 9 weeks older Mentor Mo I go. Me: So I’m filling out the SS and it asks if I am going to die from this disability. Did you say yes? Answer (in true Mo straightforward manner): Yeah, that one got me. I think I said yes b/c it may be in 20 years (see kids?) but something related to this is gonna get me eventually.

I finish the application, download and print all my medical records, and dutifully call the SS office. After the requisite 15 minutes of muzak and how much they care about my call I am connected with a woman. Me: “Hi, so I just filled out the disability application and I checked the box that says this disability will be the cause of my death (pretty easy to say to a stranger, really, it was). Woman: “Okay, let’s get some info from you (the usual deets to prove I am me). Okay Mary, so what we are going to do is expedite this for you. Usually these claims go to Boston but we are going to keep it here in Vermont so we can take care of it more quickly. You can bring your medical records in and you don’t have to wait in line. Just give them to the attendant. Make sure you write TERI on the envelope. Me: So are you Teri? Woman: Oh no, that’s a code to expedite. My name is Lisa. Me: Oh, I just wanted to thank you Lisa. Lisa: You’re very welcome. (Me in my mind: well she was nice.)

An hour later I enter the new fangled Social Security offices on Lakeside Drive – truly an upgrade from Pearl St. where you felt like a middle easterner in the back customs room at JFK (not that I know how that feels, being a privileged white woman, but I have spent a lot of time in that room as there is a very bad Mary Hamilton floating around the US who I apparently look more and more like as I age so the interviews get longer and longer with agents gathering around the computer monitor to discuss whether my eyebrows and nose match the wanted photos, which they, of course, refuse to let me see). Sorry, back to the story: the room has the requisite multiple rows of seats facing the monitor showing the next number being served. Said seats are filled, all eyes on the monitor. I walk in front of them waiting for the “Hey, get in line!” and approach the attendant fellow. Me: “Hi, I just spoke with someone about..” Him: big smile, “You must be Mary? Let me have that envelope and I’ll take it back to Lisa to make sure we have everything we need.”

Are you fucking kidding me? That’ll do Vermont.

“Bullying My Body”

I recently had coffee with my friend Mario who was diagnosed with an aggressive breast cancer a couple years ago while her son and I were still at Vermont Commons School together; he a beloved student with an impish grin and a penchant for misbehaving; ie. nicking food I was planning on serving at a school event and scarpering (can you tell I’m watching a lot of British TV?), me with a penchant for kids with impish grins and scarpering (I also love dogs that refuse to come when called, I relish independence at my own inconvenience I guess).

As we settled into our coffee and tea Mario talked about the immediate sea change she experienced toward her breasts and her body when she received her diagnosis. She said she had spent her whole life bullying her breasts, too big, too dangly. No wonder they had sprouted cancer. I had felt the same change.

If there were anything I wish I could share with women young and old and have them REALLY absorb it, it is just that. Stop bullying your body. Cherish your breasts, big, small, pointing this way and that, droopy, inverted nippled, perky but too tiny, left bigger than right, right smaller than left and vice versa. Cherish your belly that did or didn’t hold your babies (yeah, I know the uterus holds the babies, sheesh), stretch marks, moles, muffin top, or abs of steel. Thank your legs, cellulite, jodhpurs, cankles, dimpled knees. Love your jiggly upper arms, your oxter (remember that word? Well done!) bra overflow. It’s all YOU, and is also so not YOU. Binary thinking (remember that lesson? Well done!). It’s magic and is one of the greatest gifts this breast cancer has given me. I may not be perfectly in love with my body, but man, I am SO MUCH CLOSER than I have ever been.

Breaking News!

Gene test passed!

Many people have now heard of the BRCA gene tests 1 and 2. The name BRCA is derived from the very complex etiology, BReast CAncer. The scientists were burning the midnight oil on naming that one! Angelina Jolie (among gajillions of lesser known woman with breasts) had pre-emptive double mastectomies due to having the BRCA gene. Having this gene means you have a 50% chance of developing breast cancer, as do your children, especially daughters though sons also have an increased risk of certain cancers. AND, then they (both sons and daughters) pass it down to their children… The whole world can feel like a fucking time bomb. BUT not in my case! I can tell you I was NOT looking forward to telling Maggz she now had a 50% chance of getting breast cancer in those gorgeous breasts of hers. Now she just has the the second greatest risk factor: having those gorgeous breasts at all.

Anyhoo, now they test for 67 different genes that cause cancer. And I scored a ZERO, ie. I got an A+. I was going to say 100% but I thought that might confuse some of you. My genetic testing counselor summed it up “So, we don’t know why you have cancer.” Yeah, the world is mysterious like that.

And finally, Fertility.

Not my own biological, but that kind of fertility that is wrought of love, pain, fear, community; the roughing up of life’s soil, the turning over of loam to find earthworms (and grubs) doing their thing in the dark, the digging in together and seeing what we can create. Thank you to every member of my Co-Parenting Community. Because of you (and the purring cat Gypsy) the coral in my breast is reconfiguring, is talking to my other cells and realizing maybe it would like to be a member of this welcoming and non-competitive group where everyone shares their cookies and milk. Maybe it can dream of coral and not actually BE coral (binary thinking but you knew that).

Coral Dreaming

My mother’s day present from Will.

Out of the Honeymoon and into the Fire

Who knew you could have a honeymoon phase with a diagnosis of cancer? Going with the parenting analogy, perhaps it’s a bit like having a baby. “Wow, we have a baby, this is new and different! Like Christmas every day! Oh, isn’t it cute (coral don’t cha know)?! Why won’t it stop crying? I haven’t slept in days, weeks, months. REALLY? Now I have to WORRY about this thing for the REST OF MY LIFE??” So, yeah, it’s a little like that minus the Christmas everyday (oh, wait, the prezzies…).

And I am only 2 chemos in? I keep picking up scrunchies, which I had not realized were laying all over my house, and almost putting my hair in a virtual ponytail. I continue to be shocked every time I look in the mirror. Food isn’t interesting which has NEVER happened to me before. And the other day Mo and Duff came to visit me after her chemo and during mine. She had just been to an IBC support group. Like me she had been measuring her days by the milestones of this cancer. Okay, first round of chemo down, start second round. Okay, date for surgery established, then onto radiation, and DONE! What she realized after attending the support group with IBC veterans is that you really are never done. So that would be the fire, never done.

N.B. I continue to be so thankful that I have Mo a few steps ahead of me, preparing me, all the while making me laugh. Her loss, my gain. The simple economics of cancer. Ugh.

Under the Heading of TMI

The first time I heard of the shock of a cancer patient finding one’s hair all over the pillow in the morning was when I was reading Gilda Radnor’s memoir while at the family house in Rindge, NH, 1989. That would be 30 years ago… (oh Gilda, you are still missed). Since then, it is has become a pretty common cancer trope, bizarre tho I am sure it is. It’s part of the reason I decided to shave my head and donate my hair: CONTROL in an uncontrollable situation.

What has not become a trope however is having your PUBES be the first victims of chemo! Oh no, no one ever put that out there for rumination… There you are taking a shower, massaging and exfoliating your scalp with Lizzie Boolukos’ 7 Flowers of Luxury Citrine Gems, and you reach down to give your nethers a little scrub et voila! handful of pubes! Okay, handful is a little strong but you get my drift. Woah! you say. Then you call your daughter and she tells you you have to share that on your blog b/c someone has to take the bull by the horns and let the people know!

Then a few days later you think, my legs are getting a little on the furry side, maybe I’ll take a long hot shower and shave. And you start with your armpits (I have never liked that term. A pit just has bad connotations and as we know some people just love them! I just looked up alternatives on thesaurus.com: axilla (oh yeah, way better.. not.. and which I already knew, being an old nurse and all) and oxter. Oxter?? Cool! Totes going with that). And you start with your oxters, as you do, et le voila! pas de cheveux! (no hair). Oxters the likes of babies’ bottoms!

Meanwhile, my hair continues to grow back on my head needing shaving every 4-5 days. Sheesh.

Ewwww.

Let’s get philosophical, philosophical, I wanna get philosophical, let’s get into philosophy, Let me hear your mind talk, your mind talk, let me hear your mind talk…

about “non-dual knowing.” Ruh roh, where’s she going with this?

Richard Rohr, a Franciscan friar and author of spiritual contemplations (Jack turned me onto him, go figure), writes in his one of his emailed daily meditations about what most of us probably associate with Buddhism, the way of “being here now.” As we all know, this is a very important way of being when facing mortality (which we all are everyday anyway. Yes, I mean you).

The Naked Now

He writes, “Non-dual knowing is learning how to live satisfied in the naked now, which some called ‘the sacrament of the present moment.’ This consciousness will teach us how to actually experience our experiences, whether good, bad, or ugly, and how to let them transform us. (Wow, the words “naked now” cut right to the heart of how this cancer reality feels for me. Living satisfied in the naked now. Methinks I have some work to do…)

Both/And

He continues, “To touch upon Reality requires a both/and synthesis rather than an either/or differentiation where we throw part of reality out (the part we don’t like). The non-dual mind is open to everything that comes its way. It does not even deny sin or evil. It is capable of listening to the other, to the body, to the heart, to all the senses. It begins with a radical yes to each moment and to all other people.” (Radical yes to IBC, hmmm, and some more work…)

If this is more than you signed up for feel free to skip down…

And from the website for musician Adam Rudolph’s CD “Both/And”: “As an idea, Both/And invites us to move beyond binary thinking. Dualities such as good/evil, us/them, male/female, …(dare I say no-cancer/cancer)…, and so on, limit us to a kind of disjunctive thought which can suffocate intuition and stifle imagination. Both/And implies what Carl Jung called “transcendent thinking” (you’re welcome David), which contains nuance, synthesis and the holding of (seeming) opposites. For example, Yin/Yang may at first appear as a simple duality, but upon deeper reflection is revealed to also be a kind of Both/And because each part contains qualities of its opposite. Both/And manifests too as Eshu-Elegba (a spiritual guardian of the Yoruba religion; Yeah, I had to look it up too) who sits at the crossroads and reminds us to look at a person or a thing from all sides before forming a general judgement or making a move (good advice). Significantly, the conjunctive thinking that infuses Both/And can open doors to the personal mysticism that frees and inspires creative imagination.”

To here!

So… if you are still with me, and I don’t blame you if you checked out on this one, I am both the me who never had cancer AND the me who does, the fiercely independent me who is trying really hard to welcome help, the me who believes I will put these toddlers to bed so they can grow up to be human rights advocates AND the one who knows those self same toddlers may prevent me from being a grandmother (which really, of all the things, is the suckiest). And they both exist and affect one another. Whew, I need a nap!

What is your non-binary thought of being today?

Thought after all that you might need a pic of Keep and Fennec.

A Good Friend Dies.

My friend Mary Fry died yesterday of lung cancer. Given approximately 18 months, she stuck around for 5 and lived the hell out of them. This photo is quintessential of our relationship; Mary saying something no doubt outrageous and cracking me up. With a strong opinion on everything and sure of always being right she ruled her circle of friends with love, humor, and steely resolve :). Gonna miss you Mare. Already do.

Shall we close the flood gates just a titch please?

Breast cancer, Notre Dame, the news of divorce of one of my favorite people on the planet and the inevitable and deep pain that will bring her and her husband, Mary’s last wish of spending Easter weekend with her family in Lake Placid, Sri Lanka, and now her death. I am finding humor in short supply. Everyday I am glad mom isn’t alive for all of this. AND WHERE IS THE FUCKING SUN?

Sun in the form of other than rays.

I am falling WAAAAYYYY behind in my thank yous. The books, the bad ass earrings, the comfy electric comforters… yes, 2! one for home, one for Boston ;), the bringing of meals (all you queasy chemo patients out there, Viet Namese Pho is the way to go!) , the succulents, the orchids, the gorgeous box from Burma, the cards, the knitting projects, the unicorn hat from Martha that looks WAY cuter on her than me (and thus will reside in Boston), the hugs, the flying in from China, the driving with brothers, sons and daughters, and friends, my bouqueted room chez Gallagher (sorry Kare, but it is now officially my room. You don’t have a leg to stand on) friends stopping by, friends sleeping over so my dogs won’t be alone, sons and daughters calling, cooking impromptu dinners for friends that I thought I had enough energy to cook for, all the snuggles, the taking care, it’s formidable. And I thank you everyone.

I’m thinking I should become a gift photographer after this breast cancer thingy is over.

Pretty Boring Aggressive Breast Cancer Update (seems oxymoronic but there you have it)

So chemo #2 down. Felt much better post this one than the first, a little change up in how they delivered the meds. Thought you oenephiles out there might like to know that for a couple hours post chemo my urine is the color of a fine Rosé. The acupuncturist came by to poke my ears helping with anxiety (which I don’t have but can’t hurt), nausea, relaxation, etc. I immediately fell asleep (those hospital warm blankies help).

Ear muff full of needles.

Thus far I am pretty symptom free from all the long acting meds they give with the chemo. I have figured out how to sleep which is lovely. So that’s it my loving friends. Thank you for being there and sharing in this interesting life. ❤

A montage of spring, puppy love from Finlay and Haggis (watching GOT with me), old friends in strange places, and unicorn hats.

Got Podcasts? by Donna

Soooo.. for years I’ve been telling Mary about these amazing podcasts I’ve listened to and it turns out — now that she has cancer, the truth comes out — that she can’t remember their names and so hasn’t taken me up on any of my recommendations. [Sigh.] Imagine what will become of her once she has a little chemo-brain….

I’m guessing that Mary’s gonna have plenty of time for veggin’ and listening to a good podcast as the effects of chemo build so we decided I should write them all down for her. We then considered that the Mary community would also have suggestions, so we are posting it here. The following is my list; please add yours in the comments. [Later, we’ll do a music-oriented one and maybe Will can lead us in that litany…]

  1. True crime, cold cases, etc (my secret obsession):
    • Serial (the one that started it all. I love the 3rd season’s look into our messed up court system as well.)
    • Up and Vanished (Georgia cold case, second season in Colorado)
    • Atlanta Monster (I did a report on Wayne Williams when I was in 8th grade, y’all)
    • Monster (Zodiac killer)
    • Bear Brook (great NH cold case story, linking up with a serial killer and genetic profiling)
    • Last Seen (love Boston, love the Isabella Stewart Gardner Museum.)
    • Dr. Death (Mary, I think you can handle this, it’s so out there, but for most of you, I would not recommend while you are undergoing medical care. Just sayin’.)
    • Criminal (do it for Phoebe Judge’s voice if for nothing else)
  2. History/Sociology
    • Stuff You Missed in History Class (two women review in depth, while chuckling a lot, events and people both known and unknown to you. Absolutely charming.)
    • Slow Burn (in-depth looks at both the Nixon and Clinton presidency investigations. Exciting stuff for our times.)
    • Bag Man (Rachel Maddow does a Slow Burn on Spiro Agnew. Jaw-dropping.)
    • Believed (You.Have.to.Listen.to.This. I’m sorry but it is so important. How could Larry Nassar have gotten away with it for that long?!)
    • Shittown (The Best)
    • Ear Hustle (also the best – you will laugh and cry and get to know the men in San Quinton, and beef up your knowledge about mass incarceration while having a good time.)
    • This American Life (heart Ira Glass)
    • Modern Love (if you love the NYT column, you’ll love this)
    • Scene on Radio (excellent series on racism and male supremacy)
  3. Other
    • Levar Burton Reads (yes, the molasses voice, AND he picks interesting short stories to read.)
    • Two Dope Queens (Funny, hip and sexy comediennes)

Purring, Ativan, CBD, and a whole lotta lovin’.

If you know Gypsy, you know she’s not the friendliest cat on the planet. She growls if you look at her even the right way, swipes at you if you dare to walk by, bites you if you pet her a microsecond too long. For the 6 years since she appeared at my door after the college apts had emptied and her owners had left, I could count how many times she cuddled with me on 1 and a half hands. Stay with me, this gets pertinent to the story of breast cancer.

Gypsy, last cat picture I promise but there’s a reason.

About 2 months ago, Gypsy began arriving on my bed at around 1 a.m. and would lay on my left side (I sleep on the left side of the bed so we’re talking about 4″ of space for a mightily sized cat and I just so happen to have cancer in my left breast!) and purr. I just thought, well now, isn’t that sweet. But more recently it occurred to me that mayhaps she knew I had cancer before I did! “Cat purring has been shown to fall between 25 and 140 Hz. The same frequency has been shown to aid in the healing of broken bones, joint and tendon repair, and wound healing. … It’s possible that cat purrs can help humans heal faster, too.” This is from the interwebs so we know it’s true. I know, a little woowoo, but I’ll take it (and forgive the swipes, bites, and growls).

More good news…

Bone Scan Negative!!! My insurance company in their wisdom about the rarest breast cancer thought it appropriate to turn down the PET Scan, fuckers. But the study trial agreed that a bone scan would be good enough so I get to stay in the trial. And the bone scan was delightful. “Here, lay down on this comfy stretcher (really, it was comfy). Would you like a warm blanket (yes please! absolute best thing about Dana Farber, cancer research be damned!). Now lay still, breathe as you like (yay!). See you in a bit.” Total snooze, it was lovely.

And, what you have all been waiting for, my first Chemo! After a meeting with the doc that Maggz got to attend with me, and asked excellent questions btw, allowing the doctor to dispel the myth that left breasts are usually bigger than the right. She also reminded me to ask about getting a piece of my breast to bury in the yard under a tree which the doctor thought was hysterical and doubtful (maybe a little piece?). Then she asked who my surgeon was and she and the nurse started laughing and said they’d let me broach that one. Ruh roh.

Onto an echocardiogram where I got to watch that miracle organ pumping away, valves opening and shutting, blue blood, red blood. Incredible. Okay, right now, spend a minute thinking about the miracle of your body; hearts a’pumping, lungs are filling, brain is meandering with your thoughts while keeping your heart a’pumping and your lungs a’filling, your stomach is taking all that food you just ate, and hopefully savored, and is breaking it down so small so it crosses over teeny weeny barriers to get where it needs to go. Oh wait, you want to stand up? Go ahead! Oh, there’s your friend, wave your hand and verbalize a “hey” through your vocal cords while crinkling your face. Okay now, say thank you. Thank you for the good times, and thank you for the times you let me know things weren’t proceeding quite as they should be. Thank you miraculous one.

Oh, right, Chemo. So it went fine, pretty quickly actually once the meds got made. I am having a cocktail of Adriamycin and Cytotoxin (pretty appropos name: cyto: cell, toxin: killer. Cytotoxin Qu’est-ce que c’est, Fa-fa-fa-fa-fa-fa-fa-fa-fa-far better Run run run run run run run away oh oh oh yeah, yeah, yeah, yeah Prior to that I was given a liter of fluid, IV Zofran for nausea, and another nausea med that acts over 5 days. Thus far no nausea though I am told it can start at any time. I am also told that not everyone has nausea so I am going with that avenue. More good news: I don’t have to have a port put in my chest unless my veins go bad and I have always had awesome envy-creating veins so I am hoping for the best on that one.

Finally, they stick this little packet of a medication called Neulastin on the back of my arm. I feel a pic where a tiny needle has just placed a tinier catheter that will, in 27 hours, inject the medication. This my friends, is almost Star Trek.

So I get home, and with the titled cocktail of ativan and my vape of thc and cbd, I slept the whole night for the first time since I received my diagnosis. HEAVEN! (hear the choirs of angels?)

So, where’d I get the vape? It was AWESOME! Massachusetts has recently legalized recreational marijauna and there is a dispensary 3/4 of a mile from the hospital, so Willy and I hoofed it. It’s in the old Brookline Savings Bank. So you stand in line outside with 6 or 7 line tenders making sure you are standing appropriately while people heckle their efforts (pot smokers). We get inside and are greeted with the delicious smell of unsmoked bud (or flower as it is now being called, consider yourself schooled) and are given a menu. AND? It’s set up a like a bank with tellers seated behind their teller counters each with a computer! Our guy was incredibly helpful and kind and funny, coming up with the right mixture for my need to sleep and not be high simultaneously.

Check out the time on the clock. If you don’t know the meaning, you are old…

Back to DF

And then there are the patients you run into while eating lunch, waiting in the waiting room, or sitting waiting for your car. Giving you support, advice on what to take advantage of (the wellness center), or giving/getting a hug from another woman who just got diagnosed. It’s just chuck-a-block (as Grandpa Bill would say) full of sweet opportunities to make Maggie cry.

AND, then that leads us to the whole lotta lovin’. You are all blowing me away (my time to tear up). Your love, your cards, your prezzies; those that make me laugh, ie. the tile below, and those that keep me warm, and those that fill my house with color. And then my home away from home at Mart and Rog’s. I cannot speak what it means to have a place where I am so cared for, comfortable, and loved (crying again).

Prezzies from Deidre from her shop A Little Something in Shelburne!
Coral Reef Beanie by Flea
Thank you Nichole and Ava!
And finally, a huge thank you to Rog and Mart for having Eminem over to the house to rap for me. VERY special!