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. An 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.

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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.

CAT Scans and Further Plans

Cat Scanning

Excellent News! My CT scan was negative for metastases in other organs!! Woohoo! I still have a PET scan to go which shows mets the size of tiny cell balls but they worry less about those as the chemo should escort them politely out the door.

Lots of people have been offering help and I am trying ever so hard to say “yes” and “thank you” which is not really in my nature (the yes part isn’t, I am actually a pretty good thanker). Even harder will be the asking but I am going to try to do that as well. Lord knows you all need some deposits in your karmic banks. It’s the least I can do.

I have had the request from a certain luddite (initials LF) that it might make sense to give my contact deets for those who are less likely to spend their every waking minute on line (smart luddite). cell: 802-871-2097, address (for those snail mail cards (prezzies), oops did I say prezzies? No no no, don’t not send prezzies. No! I meant no prezzies aren’t welcome, no really, presents aren’t overrated, it’s your thoughts (and presents that count) OMG I am cracking myself up). Anyway, address: 243 Malletts Bay Ave, Winooski, VT 05404 and email: majahaho@gmail.com. AND, should you want to send a secret message that might have illegal connotations on here, you do that through Villagers at the top. Otherwise comment away!

Further Plans

So, I will be going to Boston quite regularly for the next 7 months starting with chemo, this Wednesday after a Tuesday full of tests. Will and Maggz and I will travel to Beantown and stay with Mart and Rog. I’ll get my first dose of poison and we’ll head home. From what I can tell per Mo Hill Collins, the chemo is cumulative in its side effects so I expect to feel okay for a bit. The first round is every other week moving to Mondays for 4 cycles (8 weeks), the second is 1 Monday/1 Sunday in a row, then one week off for 4 cycles. If you have interest in driving to and from Boston and are free on Sundays or Mondays, let me know and I’ll send you a sign up.

As for other help, I have no idea at this point what I am going to need but I’ll try to promise to let you know :).

Now for Fun Stuff

David’s dream pre head shaving: “We are walking around the back yard at Rindge. You show me where you buried your hair near the well. The small area you dug up was smoothed over and fresh cut yellow tulips lay upon the spot.” Such a lovely image.

My thoughts re breast reconstruction: if I don’t have it done, do I get to go shirtless like boys? I still remember the day when mom told me I had to start wearing a shirt. I was devastated. I couldn’t understand what was different today that wasn’t the case yesterday. So, yeah, yard work sans shirt!

Bison Visitation

Buffalo Burl

What does this mean? I’m glad you asked! “If a bison shows up for you, it may indicate opportunities to manifest or move toward manifesting abundance in some area of your life. This has hidden within it several cautionary notes though. This is not a time to push or force. Follow the easiest path.

The appearance of the buffalo also implies that the law of synchronicity is operating with in your life at the moment. Things will happen in the time, manner, and means the is best for for us if we allow it.

If the bison has shown up in your life, look for opportunities for abundance and increase. Also ask yourself some important questions. Are you honoring that which you seek? Are you remembering that the divine is essential to all thinks in the physical? Are you giving honor to yourself and to the efforts of others within your life? Do you show gratitude for what you already have?” -from Dictionary of Totems ala David

Good questions for all of us.

Photos from the Head Shaving Partay!

Amazing friends, lovely locks, laugh lines, being my dad, Donna’s specially made hat.

Hurry up, hurry up and wait. I stay “awake” all week and still I wait…

Name that tune!

Okay, so I was waiting (and not sleeping) and now I have some info. But FIRST, who knew that getting cancer would be like Christmas?! Not me, and as you know, I like prezzies so this is a real benefit. A gorgeous box of pampering arrived from Megan, Emma, and Sam replete skin-care products (made in Maine thank you very much), a luxuriously fuzzy blanket, a water bottle that may actually get me to drink water (excuse me while I take a sip), and delicious homemade oatmeal, raisin, and chocolate cookies! And, drum roll, I am getting snail mail cards!!! And all while I am feeling great but just have some coral in my boob! Just wait til I’m sick is what I am thinking.

Thank you my girls!

Finally have the appt. with Dana Farber, that’ll be Tuesday next. Rog and Mart, I’m moving in! So, the point there is they are the knowers of all things IBC. They will look at all my info, poke and prod me, CAT scan me, MRI me, PET scan me (not pet me, pet SCAN me) and then tell me this is what you need to do and your docs in VT can do it, or this is what you need to do but because of some special circumstance we think you should get your treatment here (unlikely but a possibility).

So yesterday was a very difficult day. It would appear that, nurse tho I am, I am able to compartmentalize with the best of them. I hadn’t really engaged in thinking about the possibility of metastases to other vital organs (implication: breasts are vital, I know have come to rather adore mine this past week and a half. We have had some splendid chats and they are ever so happy to be released from that item of torture, the bra. Yes people, these babies will not see the inside of another one of those preposterous contraptions). Okay back to metastases: So my unconscious had the idea that the best time to bring that out into the open was at about 3 a.m. So I lay in bed freaking out about my impending death til the sun came up, then I talked to David and sobbed, and then he sobbed. Great start to the day.

Then, I forgot that I had a doctor’s appt. with my surgeon. Really, Mary? I’m on my way to have coffee with Jill and called the office for something unrelated and the nurse said, sure we can do that Mary, but are you coming in for your appointment? Ugh, raced over there (thank you Jill for the speedy lift to my car) to have the surgeon, Mary Stanley (have I told you how wonderful she is? Well, that was only after one meeting. She is now super wonderful), totally talk me off the cliff re the metastases and, among other things, refer to this cancer as, at almost-worst, a chronic disease. I leave it to you to figure out what worst is. I personally have compartmentalized that tidbit. I left there feeling SO much better (poor David didn’t get that benefit).

Then I come home and get a call from one of my best friends, Roger, that his brother, also a friend, had just died at 62 years old. It is absolutely heart breaking to hear your friend’s heart breaking, not to mention the toll of having mortality smack us all in the face every time we turn a corner these days.

I spend much of the rest of the day fielding calls from DF, calling people to call people to send scans, reports, notes, etc. And then it’s 3:30, time for faculty meeting at Vermont Commons where Dexter is going to let all my colleagues from that beloved institution know about my diagnosis. 3:55 get a text from Heather that she is on her way over (with Rosie, her almost 2 year old and a love of my life). They arrive and I put the dogs out so Rosie can destroy the house without interruption and we have a lovely visit. I look out the door to the back yard and wonder what that white thing is that Keep is playing with. It was Lagertha, my Viking Shield Maiden chicken, breathing her last. Are you fucking kidding me?!?! Now I know a chicken is tiny potatoes compared with losing a brother. It was just that her murder by my best friends was the last straw for this particular camel. I picked up her limp body, walked to the chicken coop and sat inside and sobbed, for me, for Roger and his family, for Lagertha. Heather, distraught at my dismay, kindly took Lagertha home to give her a decent viking burial. Now that’s a friend!

Lagertha flying the coop for the last time… really, I took it about an hour before she shook off this mortal coil.

So yeah, it’s been a couple days.

Upcoming Plans:

Lead mock funeral for a vocal coach/actor to fulfill part of my work for the Funereal Celebrant class I am taking (clearly signed up for that prior to diagnosis)

Then head to Winooski to lead a conversation at Winooski Death Talks on “How Experiencing Death Changes the Way We Live” (also clearly signed up for that prior…)

Head shaving party at Lizzie Boolukos’ Beehive Beauty Boutique on Cumberland Head on Sunday! (this would be a post diagnosis sign up)

Head to DF and Beantown!

And now, what I know you really have all been waiting for: More Word Play Contest Entrants! From Matt: “Next time we come to VT, we’ll swing by to see you since we’ll already be in your general areola.” From Roger (who went on a texting roll): “Joined the blog. Thanks for keeping us abreast of the situation.” “I’m sure it’s nip and tuck.” “But I don’t know if you have any mammary of that.” Each one got a belly laugh and as we know about laughter… it makes you pee! So send me your best!

I love you all. If you read this far, I am duly impressed.

From Grape to Flamingo

Burlington Waterfront after “Time Kills Art” Art Opening at Foam

That’s how the google calendar colors are turning (or the cookie is crumbling?) as Cancer replaces Funerea Ltd. Co. WTF! I feel like Funerea was just entering some of the public consciousness. Well, I’ll just have to reawaken it when I am done with chemo.

Okay, the lowdown. Met with my oncologist, Kim Dittus, who is great (I have to say I think female docs are rocking the world; my surgeon is amazing too, and the woman I hope to see at Dana Farber is THE world renowned expert on Inflammatory Breast Cancer). So, yes, my diagnosis of IBC seems to be fixed though Dana Farber (DF from here on out) will be the final arbiter thereof. Now before you all go googling IBC and freaking out, there have been a lot of changes in the last two years which have not yet made it to the interwebs so don’t bother going there. I spoke with Midd friend Mo Hill Collins who was diagnosed 9 weeks ago [and they say this is rare? “Inconceivable, you keep using that word. I do not think it means what you think it means.”] Her doc is Dr. Overmoyer, of world renown fame, and she is very positive about new outcomes. Mo is on her 8th chemo and is faring well and also very positive.

This just in! DF just called and they are looking at my case. They’ll call tomorrow re a consult in the next few days.

Okay, back to the lowdown. I have my port placement scheduled for next Tuesday. For those of you uninitiated in the ways of chemo (lucky you, first), a port is placed in my chest that goes into a large blood vessel (the superior vena cava I believe) as the smaller peripheral ones can get really irritated. My first chemo is on Thursday. I am toying with shaving my head for Locks of Love rather than waiting for it all to fall out in dribs and drabs. I think it’s long enough… Donna is already working on a cool hippy hat for me. I will want a variety so the rest of you get to work! If you don’t knit, I welcome purchased ones :). Just make sure they are made locally from named lambs colored with dyes from nearby seashells.

Okeydoke, think that’s it for now. Oh wait! The newest wordplay from Megan this a.m.: “Love and light and all breast wishes on this fine Tuesday morning!”

The contest is declared!

A Week Out

One week ago, I noticed a rash on my breast the day after experiencing stabbing pains in the same. And so my life has taken an unexpected turn, one where nothing will be the same again. And that’s quite a thing.

Four days of biopsies, needle aspirations, mammograms (never a good thing when they ask you to return to the room 3 more times for different shots), and ultrasounds. And the verdict: invasive ductal carcinoma grade 2-3, with some presentation that looks like inflammatory breast cancer. Fuck.

The radiologist said the cancer looks like coral growing up my milk duct. I have to say, if I have to have cancer, I like that picture. I love snorkeling and I love coral. I think I’ll write a fairy tale about a goddess who saves the coral reefs with the coral that bursts from her breasts.

Telling people is hard, particularly your kids. I was watching Chef’s Table where the Buddhist nun chef, Jeong Kwan, talked about her mom dying when she was 17, and deciding then and there she would never have children so they would never have to go through that. A piece of me understands that. But luckily for me, it’s too late :). They didn’t, however, volunteer for this particular trip and that makes me feel bad.

“Fighting this, beating this…” these are my cells inside my breast. They are not my enemy, my breast is not my enemy, they are my children. I am so thankful to my LB (left breast) for bringing my attention to this situation through pain, and then the next day, because I had already filed that pain in “well that was weird”, giving me a rash to remind me. I am choosing unconditional love for these recalcitrant toddler cells, and as anyone who knows me will recognize, authoritative parenting. Setting boundaries, providing healthy food that will be tried, the same bedtime every night, taking your medicine, and no cable.

We all know (thank you Hillary), it takes a village. I would be happy to have you be a part of mine in whatever way you can; from holding my non-existent hair back when I am throwing up, to texting (NO SAD EMOJIS), to funny memes, to suggestions for books, to just bathing these toddlers in love and white light.

Wish me luck! Or as Martha said (and Rog is pissed he didn’t think of first) “Breast of luck!”

How this is going to roll…

Hey all,

For those of you who don’t know, I have been diagnosed with breast cancer, invasive ductal carcinoma grade 2-3 to be specific. Scary? Yes. Insurmountable? I’m going to say no. Someone has to be the adult here (you’ll understand that allusion later).

For now, I am going to post updates on this blog so as to keep people informed without having to write multiple emails a day, field a gajillion texts, or (egads NO!) answer the phone. BTW, the whole thing about not liking to talk on the phone doesn’t really count when it’s cancer. Feel free to call, if I am up for it, I’ll answer, if not, I won’t but I sure will appreciate the effort!

I’ll try to make this blog enjoyable, mayhaps even funny (?), and somewhere along the way (when I am laying on the bathroom floor doing the NYT Crossword in between dry heaves), I may just have someone special take it over (if you’re very very good, I might ask you. Not really, I’ve already decided who the lucky one is).

Feel free to unsubscribe if this is not your gig. I promise I’ll still love you. -Mary