Indeed, What Now?

I have been singing a song daily for the last few weeks (ear-worm-like). I wake up humming it, I drive humming/singing it, I clean the house to its beat. It wasn’t until yesterday while walking the dogs that I truly realized what I have been doing is chanting a song that asks me What Now over and over. How’s that for some subconscious work? I can see my interior self rolling its eyes yesterday and saying Jeez Louise, FINALLY!

What Now? – Rihanna

I encourage you to listen, much better that way

Rihanna (or me had I been born a poor black girl in the West Indies.)

I’ve been ignoring this big lump in my throat
I shouldn’t be crying
Tears were for the weaker days
I’m stronger now, or so I say
But something’s missing

Whatever it is
It feels like it’s laughing at me through the glass of a two-sided mirror
Whatever it is
It’s just laughing at me
And I just wanna scream

What now?
I just can’t figure it out
What now?
I guess I’ll just wait it out (Wait it out)
What now? Oh-oh-oh-ohh
What now?

I don’t know where to go
I don’t know what to feel
I don’t know how to cry
I don’t know, oh-oh, why
I don’t know where to go
I don’t know what to feel
I don’t know how to cry
I don’t know, oh-oh, why
I don’t know where to go
I don’t know what to feel
I don’t know how to cry
I don’t know, oh-oh, why
So what now?

This is a bit more dramatic than I actually feel most of the time but I am indeed at a loss. My friend Donna was talking to a friend who has had cancer and now runs a not-for-profit called Maggie’s Brightside. They support people with cancer, their by-line being “Living with cancer is hard enough. Let’s make it a little bit easier.” Donna was telling Jane about my experience and Jane talked about this period, post-treatment, actually being the hardest after the initial diagnosis. It’s interesting, nobody tells you that when you start out. I suppose it makes sense as you get a diagnosis and launch into “get ‘er done” mode which you maintain for months and months to wake up one day with treatment over.

Disconcerting, it’s a little like grieving when the world moves on. There are all kinds of “congratulations, you’re done!”, “you beat that sucker!”, “we knew you could do it!”, and of course, “what now?” (not that this is what people say to the grieving but there is the expectation that after 6 months or a year things should be back to normal when, really, they never are nor will be). Don’t get me wrong, all those wishes are so appreciated, the fact that people take the time to make those wishes and feel those feelings for me is wonderful and humbling. And, I sit here in my little yellow house, putting it back together after 9 months of benign neglect, and have trouble rejoicing (and feel guilty about it of course). Like those folks who mourn a loss, make it through the first year, and are expected to move on, there is a loneliness because really when you get down to it, we are all actually islands (sorry Mr. Donne). We share a warm and wonderful sea full of coral, sea anemones, the errant shark, and sea turtles but the waves that lap at my shores lap at my shores only. And sometimes the waves are less than friendly, eroding my confidence in myself and my ability to figure out “What noooooooow?”.

But… if one has to be an island, this wouldn’t be so bad.
Photo by Nathan Anderson on Unsplash

Prying myself up, out, and into the world and being the recipient of utter joy

said little yellow house

Another friend, Jen, (how on earth I landed so many amazing friends is a constant mystery and constanter blessing) gave me tickets to see the Dance Theater of Harlem at the Flynn on Wednesday. I vacillated on going. You may remember it was just plain ugly out; cold, wet, and getting wetter. I vacillated all the way to Burlington, all the way around the endless blocks of no parking, my little voice saying “you can go home, get cozy, watch TV, clean”. But I shushed that pesky voice, ended up going, and gave my extra ticket to a young transgender gentleman whose ballet teacher told him he should go. So he and I had amazing seats in a sold-out house. Lucky us!

It was so beautiful, heart wrenching, joyful, and funny. I left walking on air, happy to my core, and I am realizing right this very minute that I had none of that little voice on my shoulder (usually very active that voice) saying “oh yeah, what have YOU done with your life?” that I always seem to get when seeing/hearing some human act of artistic beauty. Might we be growing up??? Maybe… Nah.

Unexpected Hugs on Malletts Bay Ave

I was out clearing the drive way of random blocks of ice and snow (really November?!?) when I heard “Mary!” I looked up and the young fellow who works at Sammy’s Quick Stop and Deli (no actual deli. PSA, titles can be misleading) was across the street waving to me. I crossed over and this man with the warmest smile gave me a hug, asked how I’m feeling, and where I am in treatment. Back in the spring he was the first in the store who had acknowledged my bout, asking how I was feeling early on and when I answered, “okay, I have cancer”, he smiled and said “I know”. I cannot for the life of me remember his name though I have asked his Uncle Prakosh who also works there. Now I’ll have to ask Sammy. These 3 men have been such sweethearts these past months. Asking how I am, trying not to pry. This is why I love living across the street from a convenience store (eyesore be damned!). There’s the convenience thing sure, but it’s the random connection with human beings you might not otherwise know that clinches it.

Sammy’s

This is me, breathing

My answer to What Now?

Happy Thanksgiving Everyone. If you were in my family I’d make you light a candle and say what you are most thankful for this year and you’d groan and then be so thankful I made you. It’s a TRADITION! (thank you Tevye)

Kintsukuroi and Leonard Cohen

Ceramic break mended with gold

Kintsukuroi, or kintsuki, is the Japanese art of mending broken ceramics with a gold lacquer. Per wikipedia, “as a philosophy, it treats breakage and repair as part of the history of an object, rather than something to disguise.” and I would add, “or throw away.” Get where I am going here? The scars on my chest, the hidden scars in my heart, and all of your scars both hidden and not, are part of the history of you as a human and not to be disguised or denied without consequence. As Carl Jung wrote, “If you get rid of the pain before you have answered its questions, you get rid of the self along with it.”

As I come to the close of the treatment for these recalcitrant toddler cells (2 more weeks of radiation and done!), I find myself looking at this repaired chest and wondering how I move on and out of this place in which I have dwelled for the last 9 months – an auspicious number during which gestated my new (and improved? well, at least changed) self. What do I do with all the space cancer and its trappings have taken up in my mind and heart? I am not the person I was last March 17th. Like one asks when pregnant, who will this baby be, I ask who am I now? who is it I have/I will become?

I have these new scars and I am proud of them. They represent the dissembling of what I thought was my reality and the process of reassembling a new one (which I now more fully know is just waiting to be dissembled, nature of that beast we call life). What adventures lay before me?

There’s a crack in everything, that’s how the light gets in. L. Cohen

I love that line. It has become a beacon of hope for me in these days of destruction (here I refer to he who shall not be named in my blog and his lackies). On a personal level though, I really like its juxtaposition with Kintsugi; the gold that mends the breaks coming from inside me and the light from all the incredible gifts this cancer has put in my path pouring through these scars into my heart which then helps me create that gold that mends said scars and the circle is unbroken (cue beginning sound track of the Lion King, or Gregg Allman, your pick).

R * A * D * I * A * T * I * O * N

‘Nuff said.

Yeah, not really. In physics, radiation means the emission or transmission of energy in the form of waves or particles through space or through a material medium. In the treatment room radiation is isolating and weird. You walk in and meet these young radiation techs (all women, all maybe 17 years old) who are bubbly and kind, you lay down on a gurney of sorts, they push and pull you to align your tattoos with some measure on some machine while asking you about your plans for the rest of the day and then they leave b/c, as we all know, what they are about to unleash is VERY BAD FOR YOU. And it’s invisible. I don’t know about you but VERY BAD INVISIBLE THINGS weird me out.

So you go along and you feel fine, though at times you get hit with a fatigue so overwhelming that you think if you don’t lay down right now, well, you just have to lay down right now. Other than that though you walk the dog, explore Beacon Hill, see your friends, maybe do a little shopping. Then you start to tan but it’s a strange tan in that it is only over one side of your flat little chest and under your arm but okay, you’ve had tans before. Then your chest (really I mean me thru all of this, lucky you) starts to redden and you get folliculitis (inflammation of the hair follicles), lovely. And you still have 2 weeks to go, lots of time to blister and slough off your skin (ha! have I got your attention now? gagging are we?) and, oh yeah, the radiation sticks around for 2 weeks post treatment doing its WMD thang on its own. Which will bring me to Thanksgiving and on the same day… MY BIRTHDAY! I love my birthday and I love Thanksgiving so this year is extra special being the gift of another birthday and all kinds of things to be thankful for. But I digress…

hahahahaha

It hasn’t happened a lot but occasionally I hit the emotional wall.

The Flat and Fabulous FB page is a private page where we women who decided against reconstruction, or those who are trying to make the decision betwixt reconstruction or not, can go for support, advice, tips on skin care, etc. Last week a vibrant and pivotal member of this group died suddenly. She had been an incredibly funny, honest, sassy voice and we were all blown away by her unexpected death at 45 of an apparent heart attack (thin as a rail, pretty in the way of faeries, seemingly healthy other than post breast cancer, mom of 3, activist, you just never fecking know people).

I was walking the dogs and John called unaware of the limb from which I was dangling. “How’re you doing?” he blithely asked and was treated to a total melt down of tears and existential angst. “I AM SO TIRED OF CANCER. I am so tired of thinking about it, talking about it, having it attached to my every thought and action. I’m tired of friends dying from it.” John, through his own tears at my tears and wanting to fix this, talked about compulsive thinking and what to do about it. But it’s not that. It’s not the rabbit hole, spiral, racing mind thing. It’s just always fucking there because everything in my life revolves around it. I go from here to there for treatment, I think about what I eat and its effect, I try to pay attention, I acknowledge how bizarre my sleep or lack thereof has become, I watch my skin redden and start to bubble, I put on ace wraps, I try to pay attention, I attend my friend Judé’s memorial service, I rub aquaphor on my scars and on the bubbly skin, I go along with my day and suddenly if I don’t take a nap RIGHT NOW I may fall down, I try to pay attention. And most of the time I am okay with it but that day before John’s call, and one week after Judé’s service, I had found out about Rebecca, the FB friend, dying and it was just too too much.

And he talked me down and made me laugh and I am very thankful for this man with whom I have shared so much of my life and who knows me so well in so many ways and with whom I can say just about anything and we can laugh about it. Divorce doesn’t get much better than that. This would be some of that light getting in I was taking about.

And here I sit…

…in my lovely little apartment in Beacon Hill (some of that aforementioned light á la Mickey and Robin) having spent last evening having a Mediterranean dinner (more light á la Mart, Rog, Elissa and Narayan) watching the Ravens beat the Patriots (light á la my own personal goddess), now gazing at the Bostonian blue sky and pondering a walk on the Esplanade while awaiting Maggie’s arrival whereupon we will continue her cooking lessons by learning how to make meatloaf and Hasselback potatoes.

Freaking blessed I am. -Yoda

“Don’t change” he texted. “Too late,” she replied breastlessly.

One-of-my-best-friends Roger texted further, and a tetch more seriously, asking if I feel I have intrinsically changed. An interesting question. He said he didn’t think I had, though perhaps I was better, stronger (thanks Rog). I said that I think I am more me (which some might find scary). But as we often hear in that familiar cancer, or any life threatening illness or event, trope, some of the bullshit has dropped away… (and some remains, damn!) Despite that human desire to be different, offer something unexpected, there truly is nothing new under the sun. Like the millions of folks with cancer before me, some clarity has been gained, some chaff has been separated. But intrinsically I remain the same flawed yet optimistic, probably to a fault, me.

Pathology

“The surgery went well. We’ll have the pathology results in 2 weeks.” Appointment made for 2 weeks post op. Spend two weeks avoiding thinking about pathology except when your daughter brings it up regularly. Drive to Boston, have radiation consult, Doc says “well, unfortunately your pathology is not back.” What?!? “Maybe it will be back by the time you meet with Dr. O. this afternoon.” Okay that sounds reasonable.

Visit with Mo as she gets her infusion, “yeah, mine came back just a few minutes before my appt with Dr. O.” Okay, I can deal with that.

Head into appt with Dr. O. “So your pathology isn’t back.” Why??? Dr. O says this is a good sign. Her thought is that they probably found some cancer in the lymph nodes and so are really taking their time with the breast tissue to make sure there’s nothing there. HOLD ON! Good news? Cancer in the lymph nodes is good news?? She goes on to say, well, you know because you are estrogen receptor positive you only have a 2% chance of being clear. No, I didn’t know that. It would have been good to know that (maybe, hard to say actually, probs would have spent a whole lot more time thinking about it during those 2 weeks).

Enter Rabbit Hole. Voice inside head. There you are, going along privately, very privately as you didn’t even know you were doing it, believing you would be different. You (I) would be the one to put IBC in the past. Despite being on the IBC FB page where woman after woman shares her years of treatment, the disease that never goes away, is merely held at bay, where metastases to bone, kidney, brain are the order of the day. Where questions and comments like “What should I expect from brain radiation?” “Has anyone else lost feeling in their feet? Does it come back?” “I am sorry to write that _______’s husband let me know she died this morning” fill the feed. I will be different. This is what we do, how we get by as humans in a completely uncontrollable world. Won’t happen to me, my family, my friends. Not us, the implication being that we are special, more special, luckier than the next guy, gal, family (say or write special enough and it becomes a very strange word).

I’m special. Not me!

So while I am chastising myself for all that subconscious blather, Dr. O. says the surgeon will call this week when your results come in. Yeah, no. Apparently the surgeon thought Dr. O had it and vice versa. So, I go in on Friday to have my radiation mapping done (now I am a country of cancer) and ask whether the results are back. OMG, no one called you?!? Nope. Dr. Bellon, my radiation oncologist, who is another star in my book and who shares a love of the north and is, this very week, in Alaska attempting to photograph polar bears at the northern edge of the Brooks Range, then went over the report: one positive lymph node out of 9, a small amount of invasive ductal carcinoma left in the breast tissue, both removed in the surgery which may seem obvious but I needed reminding that it’s gone. No evidence of cancer in the skin (if you will remember that’s a primary way that IBC spreads). All very good news (except that part where all the cancer wasn’t gone). The doctors are VERY pleased with my response to therapy. Yay?

Cancer as Algebra

I was never very fond of algebra because I really wasn’t any good at it. I also had a teacher, Mr. Smith, who repeatedly told me to smile, that I was so much prettier when I smiled. Ugh.

So the thing about algebra was that you would spend all this time trying to wrap your brain around a theorem, finally get it down, kind of, and there would be another fucking one, more complex, waiting on the other side.

IBC is kind of like that. You get assigned to the course you never wanted to take in the first place but it’s mandatory. You are given your syllabus: chemo, mastectomy, radiation. But you really just focus on the thing you have to conquer first. Chemo, what will it be like, can I do it, what if I can’t, what if I fail, what if I throw up during the test?And you get through it, you have summer break, and then you have the course in mastectomy. What will it be like, can I do it, what if I can’t, what if I fail, what if I get an infection, what will no breasts be like, will anybody ever want to be my boyfriend again? And you get through it, you’re off for the Native American 3-day weekend, and radiation is on the other side. What will it be like, can I do it, what if I can’t, what if I fail, what if my skin burns, peels, scars, what if it doesn’t get all the cancer (there are some days when your recalcitrant toddler cells are in their twos when you just want them to go away.)

It’s a sped up version of 9th grade. I don’t know about you but I HATED 9th grade.

Going Flat as a Cause

Anyone who knows me knows that I like a good cause. Back in the days of the Native American Chief crying by the roadside littered with trash I went out with my bag and collected garbage. Organic gardening? I’m in! Standardized testing? Not for my kids! Women’s March? I’m there! Ultimate frisbee? Oh yeah (okay not really a cause but…). Climate March? ACLU? Obama? #MeToo? Check, check, check. (I am presently realizing what a first world privileged white woman list that is…).

And now the the Flat Movement. The stories from women choosing not to have reconstruction are amazing: doctors repeatedly telling them they will regret the decision b/c everyone will stare at them; surgeons, who, having been told that a woman wants to go flat so please leave very flat scars and no extra skin, leave “dog ears” or flaps of skin under the arms that can be used for reconstruction just in case she changes her mind (because we women do that); doctors who insist that the woman have psychological counseling before he will accept the decision to go flat, because really, that’s crazy, right?

I luckily have experienced none of that. Every doc I have had (all female btw) has been supportive of my choice. I for one, having undergone the mastectomy, cannot imagine choosing to have surgery again. I REALLY don’t like surgery, don’t like anesthesia and the idea of being unconscious, don’t like opening up my body in a hospital where all manner of germs live, don’t like pain, pain meds, wooziness, fear of infection, etc. And then there are the implants being recalled, the symptomology of women with implants who end up having autoimmune-like issues and the necessity for ex-planting (more surgery). Luckily for me, and I mean this, my breasts were not a vital part of my sense of self. This is not, however, the case for so many women in this body-centric culture of ours.

So, I get to represent the flat side of life. I get to say no to implants, which because it is easy for me, is an easy cause to support. And, as I admitted kind of sheepishly to my friend Jill yesterday, I like being flat. I always wanted small perky breasts not the pendulous non-descript-sized ones I had (oh how we always want what we don’t have). Well, I certainly have small ones now!

So many women on the Flat and Fabulous FB page talk about their fear of the first time they have to go out in public. How they feel everyone will stare. I say bring it on! This is reality, this is the result of breast cancer. This is me standing up straighter than I ever have, proud of my choice though can you truly be proud when you never considered the alternative? And yes, this is still the me with that little niggling voice saying will anyone ever find me attractive again? Please don’t say that of course someone will. It’s a rhetorical question, and you don’t know that someone will anyway, particularly as I wasn’t having a whole lot of action when I had breasts! Poor poor pitiful me (name that singer).

Moving to Bo-oston soon, gonna be a dental floss tycoon…

So radiation starts next Monday, the 7th. I have signed on to another study where I may, or may not dependent on how the cookies fall, be taking a medication that blocks one of the two ways cancer cells regenerate (radiation blocks the other). It’s called a PARP inhibitor. As with all studies related to IBC, there are very few people enrolled, 15 in the country right now. I will be #16, they would like 200. And they don’t really know the ramifications of said drug. So my biggest worry is that it will effect my heart and lungs which are inevitably somewhat in the way of the radioactive beams. But as the rad. onc. doc says we don’t really figure that damage out for years…

So the decision is don’t do the study and die of returned cancer in 5-10 years (or not, one just doesn’t know), or do the study, live beyond that 5-10 years but maybe have heart and lung scarring that will give me a sucky quality of life (or not, one just doesn’t know). I find out on Friday if I am in the take the drug group or the control group. Anything to advance science!

Robin and Mickey have offered me their wonderful pied a terre on Charles St. in Boston for the duration of my treatment. The generosity of friends and family goes on and on and on. While I will miss being the honored and beloved guest of Mart and Rog in Belmont, I think 6 weeks in their home would be taking advantage of the best of friends hospitality (which they deny). This way I can have THEM for dinner and return a bit of that hospitality, and, wait for it… I get to have my pupper Keep with me!! So, in between naps as I am told radiation can be exhausting, Keep and I will walk the river, the Commons, and Fresh Pond. I will go to museums, drink tea, and watch Netflix. And I will figure out what life (and my business) looks like post-treatment.

Wow, can’t believe I am almost there. So very lucky to have you all accompany me. ❤

Yes, it is GOOD.

Breastless and Breathless

Do you remember?
“Flatsies, Flatsies, they’re flat and that’s that… and THAT’S THAT!

The deed is done. I have joined the ranks of the breastless. There is a kind of wonder that catches my breath in looking at myself in the mirror, Frankensteinian stitches horizontal instead of vertical, stretching from sternum to under both arms (remember the oxter?). Bruises from wayfaring blood during surgery. The plastic tubes of drains, with a watering-hose-like blue stripe to keep you from letting them twist, exiting through a hole in my living skin leading to bulbs the look and shape of grenades. After “milking” the tubes (think of getting the last of the honey out of a honey stick, or since we are in Vermont, the last of the maple syrup), I empty the grenades of their bloody contents at 8 a.m., noon, and bedtime as the directions direct measuring their quantity (40 ccs, 24 ccs, 12 ccs, you get it). Each has a personality, a speed of fill-up, its own color and viscosity. Right 1 is the most truly blood-like and prolific in its amount and viscosity, being the harbinger of “time to empty”, right 2 is less strident but happy to go along with one, left 1 is watery but still bright red and lags behind it’s right counterparts, and left 2 is mostly yellow which I have to assume is due to lymph from my absent lymph nodes (a conundrum I know). Left 2 gave me a scare yesterday. I went to empty it and as I was milking it I noticed it was really green. Oh God, INFECTION… but it just turned out to be the optical mixture of the blue stripe and the yellow contents. Phew.

Processing

Friends are asking how I am doing emotionally on the loss of my breasts. I had spent the 4 weeks since the last of chemo not going there. Thinking about it all seemed pointless as there was nothing I could do about it. Compartmentalize, compartmentalize. As the day drew closer, I would caress my breasts saying goodbye in short spurts of acknowledgement. Then I received an offer. I was texting with Gioia as I was walking Dog Mountain with the pups, getting news of Judé and filling her in on my veritable lack of processing. She texted “You want photos?” You see Gioia is a photographer and much of how she processes is through her work “…for me objectifying the disease makes it more subjective and personal”. I loved the idea: an ode to my breasts, their history, their works, their breastyness. So, the Saturday before surgery we did a 4 hour photo shoot investigating fecundity, amputation, imperfection, love, and the passing on of breasts (Maggie’s being evolutionarily eons beyond mine). I am not sure I would have been as settled as I am now had Gioia not made that remarkable offer. Thank you Gioia.

The Apple in the Garden
unretouched photo by Gioia Kuss

A Weird and Unexpected Return to Childhood

An hour or so after surgery, they let Maggz, Jack, and Martha in to see me druggèd self. Of course, Maggie being my daughter, they came bearing gifts: a flowering plant (orange, my fave color), 2 pairs of socks: one Atomic Mom, t’other Grumpy Old Man (a nurse who walked by me as I was being wheeled to the OR nodded and acknowledged me by saying “sir”, just the thing to reassure your femininity as you are heading in to get your breasts lopped off), a Get Better Soon balloon, and a stuffed blue and red dragon which I immediately named Draco (druggèdness = creativity). I love that dragon. And I am not a stuffed animal kind of gal as I suspect most of you suspect. But I held that dragon all the night thru in PACU (post-anesthesia care unit, which, get this, is a bunch of cubicles delineated by curtains inside of which each person has a fucking TV! Are you kidding me? We are all just out of surgery and we can all turn on TVs separated by curtains? Of course the fellow next to me loves him some TV and is hard of hearing. So, they give you earplugs…). But I digress. Back to Draco. He was such a comfort in a way that I haven’t felt from a stuffed animal in a loooooong time. When we got back to Martha and Roger’s post hospitalization we realized that somewhere along the way I had lost Draco and I was truly upset in a way I haven’t been over the loss of a stuffed animal in a loooooong time. And then miracle of miracles God took a tailor by the hand, oops, wrong movie (but if you can name it you win a prize!). Miracle of miracles, Martha found him in her work bag! I was unaccountably happy about the finding of a losot stuffed animal in a way I haven’t been, you got it, in a loooooong time. And now he sleeps by me at home and every now and again I touch him during the night and feel comforted.

Draco the Comfort Dragon

A Second Weird and Unexpected Return to Childhood

T’other night, Jack and I were Netflix surfing and came across a new series that is the prequel to Jim Henson’s “The Dark Crystal”. I think I had wandered through the room when the kids were watching the original movie, perhaps sat down with them for a bit as the characters were familiar. But as we watched the new show, I was drawn into the story and the world of the dark crystal in a way that felt familiarly like I had as a child. Not completely out of step with reality, I felt a longing for the ability to believe in the story as real while I was being swept into it at the same time. Might it be the lack of breasts bringing me back to my flat-chested childhood when life was simpler and more straightforward, stories were real, fantasy was possible, summer was endless, my best friend lived next door and we saw each other every day, our games involved trees that were horses, berries that gave us powers, umbrellas big enough to provide shelter to two girls under the leaking barn roof? Oh for the lack of the nuance that came with breasts and the concomitant adulting.

The Dark Crystal

Life Goes On and Shit Unaccountably Keeps Happening (and music always helps)

The week prior to surgery my eldest brother Michael came down with food poisoning that didn’t wear itself out. He was admitted to the ICU with strange symptoms, strange labs, and appearing to be engaged in a long strange trip. By Saturday there was not enough improvement for me not to go see him. I didn’t want to wake from surgery and find out I’d never see my brother again (dramatic but that’s where my mind goes), so I packed for surgery (exceedingly poorly which would prompt Martha to go to TJs for the softest, comfyest, loosest, clothesiest clothing to go home in) as I would go from Maine to Boston on Sunday, uploaded some podcasts and sped off to Maine.

I arrived around 10 pm and sat by Mike who was well sedated having had seizures earlier in the day. Told him in no uncertain terms that there would be no dying anytime soon (as I had instructed mom and dad on the way there “turn him right around should he show up”). Then we listened to the Allman Brothers for a couple hours.

The next morning I arrived early and Mike was kind of awake, semi-lucid in a talking nonsense with occasional sense kind of way. I put on Santana’s Caravanserai and Mike smiled, eyes closed. He then started to play air guitar with one hand, eyes still closed and face crinkling in time with his notes. It was hysterical in a much needed kind of way.

When I asked what he would like to hear next, he said the Allman Brothers’ Desdemona. What?!?! I had never heard of this song. I had no idea that there was an Allman Bros. song I had never heard of. He was teaching me through the fog.

So, Mike having handily upstaged my surgery (which I hope to never let him forget), I left him and his girls to head to Boston, much relieved though still worried (isn’t that always the way).

He is out of the ICU as of today and getting better steadily.

Thank you mom, dad, and God.

(no photo here because, well, that just wouldn’t be right. BUT if you were wondering about Flatsies….)

I had totally forgotten that they came in frames!

Mother Moon and Susuwatari

Nashville drawing on Turnip Truck grocery bag.

I have had this summer the remarkable gift of both my windows at home and at the cottage facing the transversing moon. As I lay in bed and the moon appears I have taken to baring my breast and talking to Mother Moon, asking her to please draw these cancer cells from my body and give them a new home. As they are leaving my breast I picture the susuwatari (black dust sprites) from My Neighbor Totoro (if you have not seen, do so immediately and feed your inner child) as they leave Mai and her family’s home. They leave because they realize that Mai and her family are good people. It follows that I am a good person, so… Thank you Mother Moon.

Musings on Raindrops

A couple weeks ago Maggz and I went to the cottage for some quiet and beauty. I realized that I had forgotten my vape pen with thc and cbd oil that helps me sleep. Uh oh. Maggz exclaimed “No worries! You can smoke some of mine!” What a gal :). Now prior to this vape pen and in these my latter years, I had smoked the occasional weed. In general, I would end up laying on the floor with the kids laughing at me. So I steered away from that embarrassing posture. But I figured, I have been getting a little thc in my pen so maybe I have built up some tolerance, and I’ll already be in bed! So I tried it and it worked! Actually better than the vape had. AND I DREAMED! I hadn’t really realized that I hadn’t been dreaming much. I tend to wake up thinking about cancer, eat breakfast thinking about cancer, walk the dogs thinking… well, you get it. So it was lovely to dream and kinda remember it in the a.m.

Photo by Eutah Mizushima on Unsplash

So, the next night Maggz had gone home but left behind a little nug to take care of her mama. As I was laying in bed, high, waiting to sleep, it began to rain. There is nothing like listening to the rain on the roof of a cottage, as well as in the field next to my window. As I was listening I realized that every drop of rain has one chance to make a noise as it hits whatever it meets near or on the ground. And there are millions of drops during a storm, hitting leaves, grass, roads, houses, people, water, rocks. It occurred to me that I should witness as many of those sounds as I could, so I concentrated on the individual plops of rain, acknowledging their journey and the end of this particular stage before they enter the ground, get taken up by a plant, respired into the atmosphere, float up to the clouds, gather to make new droplets, and so on. And of course, being high (obviously) I made the connection that it’s all a metaphor for our journey (it seemed quite profound at the time, go figure) and it’s our job to witness and acknowledge as many of our fellow raindrops during our time here. So that’s what I am trying to remember and do these days. Consider yourself acknowledged, or pending acknowledgment.

The Loss of My Breasts

So, chemo is over and the impending loss of my breasts is becoming real. My breasts: they fed my babies (one of my favorite times in life), entertained some men (not as many as some of you gals back in the days of post free love, but a few), were a soft and absorbent pillow for family and friends in need of a cry, created a nice foil for the belly beneath as it variably grew and receded.

And, difficult though it may be to realize/read/hear, they are being amputated, lopped off like the legs of Civil War soldiers. My breasts. Some people have phantom breast syndrome, the brain saying “where’d you go?”. Where’d they go indeed. They will be put in a dish or a bag and sent to pathology where someone completely unknown to me or my breasts will search them for signs of susuwatari, not knowing that mother moon has already brought them home. Going to be a boring search for some lab rat, so there!

Shame and Regret

Not worthwhile. Acknowledge, bow, and move on.

People Brought to Me by IBC

New friendships and re-connections with old.

Only 4 and a half months ago I had never heard of the Pan-Mass Challenge

Clockwise from top L: Matthew Coll (my hero), the team (wearing my most excellent logo!), SO many bikes, the finish line, Matthew rode for me, his aunt and his college roommate both of whom died way too young.

And now it is fully a part of my lexicon. Crazy.

Matthew Coll and his team rode 192 (or was it 196?) miles from Sturbridge Village, MA to Provincetown, MA (Pan-Mass, get it?) to both raise money for, and bring awareness to, Dana Farber Cancer Institute and the work they do to figure out, hold back, and cure cancer. Matthew himself raised $15,325!!

It was nothing less than overwhelming to tearfully greet Matthew at the end of his ride, see my name written on his leg, my logo on their jerseys, and watch the hordes of multi-aged riders, each with their own story of why they do this, as they arrived in Ptown. Thank you Matthew, for your commitment and your love.

So feckin’ A, now I have to do it! Hoping to be hearty enough to start training in the early spring… If I can ride around Lake Champlain, which I mostly did with Vermont Commons School (sometimes Chance made me drive the truck 😉 like during the bad hills… oops), then I can certainly can ride across Massachusetts despite the fact that the Circum-Champlain ride was oh, 10 years ago, right???

One More Cup of Chemo ‘fore I Go…

Been listening to some Dylan of late.

Yes, folks, this Sunday will be my last chemo. Then a few weeks off, and… SURGERY? I was trying to see what I have written about my thoughts on mastectomy prior, but my laptop has decided to not let me scroll so excuse me if repeat myself.

So when I learned of this new venture called IBC which would almost but not quite take over my life, I was told that I would have to have a mastectomy. While some folks want to hang on to that second boob, I am more of the mind to go symmetrical and flat.

Reconstructive surgery is brutal with IBC b/c they do a “non-skin sparing” surgery. You see, we have breast tissue all the way to our collar bones and halfway down our ribs. And as you have learned in past IBC lectures here, but which I will reiterate so you don’t have to find out the scrolling feature in your laptop has died as well, this pesky cancer grows its own blood and lymphatic system, thus spreading out into all that fresh territory. So the surgeon takes as much skin as she can and still be able to sew you back up.

The choices then for reconstruction are: 1. do an abdomenoplasty (yes, now I remember that I told you all this before) and move all my baby fat up on to my chest in a 12 hour surgery and give me that bikini body I have been craving since age 12… nah, or 2. cut wings of muscle and skin off of my shoulder blades and wrap them around onto my chest and put implants under them, thus leaving my shoulders weaker. Having virtually no upper body strength I am thinking I won’t give up what I already have.

I then make my decision to go with a bilateral mastectomy whereupon I am told by the IBC gurus that their standard of practice is to do one now, one later, so you don’t take the chance of getting an infection in the good boob and putting off radiation. Six months with 1 boob, two surgeries, two anesthesias, two recoveries. Ugh.

So I do some research on national averages of infection in unilateral vs. bilateral mastectomies nation-wide: 4% uni, 6% bi. And that’s national with regular joe blow surgeons, not MY Dana Farber surgeon. And then I realize, 6 months til the next? I am going to have to pay my high deductible all over again! Not sure any of you have noticed but I haven’t worked in over a year (okay, I have worked but I haven’t made enough money to offset what I have put into the biz).

Now, I have gone to Dana Farber several times with ideas for variations on my care (ie. can I get ANY of it in VT?) and have been shot down (rightly so) by their arguments. So, I didn’t have a whole lot of faith that this time would be any different. BUT IT WAS! My surgeon said that while she preferred not to do a bilateral, she would due to my stellar reasoning and research (my words) and assured me I would be fine! As Martha said when I texted her the news “Yay, funny thing to be jumping up and down about.” Yeah, oh boy!

Then last night I was texting this update to Mo and she texted back “Good for you for winning the bilateral insurance fight.” Wait, what?? Do I have to fight insurance for this?

Back to the drawing board…

A Much Cheaper Way to Gain a Waist than Abdomenoplasty

First, you make friends with the new girl in 6 grade after the teacher comes in and says we have a new student and she is VERY tall, please be nice to her. I took that as a personal directive from God (aka Mrs. Cryzanowski) to me and was answered with a life long best friend!

Fast forward about a million years and she and her husband start a stylin’ clothing line called “All Topped Off”. This was in the early internet years, they got hacked, chaos ensued and a few years later they folded (get it, they folded?) and were left with lots of cool clothes (which you can now find on Poshmark, though I couldn’t when I tried… Kath?).

So Katrin (as I call her) and her husband Ed flew in from Texas last week to visit and brought me, you guessed it! A waist! I have NEVER had a waist, just a straight line from chest to ribs to hips, the unfortunate combination of my mother’s early lovely little waist and my father’s manly non-existent one. But check this out! and it didn’t cost me a penny. In fact it is a bennie from the culmination of 48 years of friendship (and she’s still way taller than me).

Okay, so it’s not MUCH of a waist but I’ll take it!
Maggz, Ed, Katrin, et moi!

A Different Kind of Overwhelm

Chandler

As I sat with Martha, Roger, and Luke in a shady bar in Provincetown after celebrating with Matthew and Rebecca, I received the very sad news that my step-nephew Chandler, 35, had died after a short illness.

Chandler was a remarkable guy. Born with osteogenesis imperfecta, a genetic disorder that causes one’s bones to break easily and to grow in a misshapen manner, Chandler had countless surgeries (like really, countless), got around via a very fancy electric wheelchair, was brilliant, and had a wicked sense of humor. He insisted on being independent, living in Boston, with a recent dream of moving to Seattle, the center of the gaming world.

We often bemoan the internet for our various personal reasons, many of them valid, but the internet provided Chandler with a vibrant social life, and his presence there provided so many with friendship and laughter. Reading the responses to the news on his FB page, I was floored by the 20 year relationships he had with people he had never met face to face but whose lives he enriched (and was enriched in turn) with his ideas, his humor, and his doggedness and who are devastated by his loss.

I am heartbroken yet again for parents and siblings who have to face a world of grief, this time Robin, Mickey, and Molly.

Toni Morrison died yesterday and Twitter has this quote:

“We die. That may be the meaning of life. But we do language. That may be the measure of our lives.”

Being physically restricted by OI, Chandler did language. And he measured up. Cheers Chandler and bon voyage.

Friends and Freedom

Cancer is a funny thing. It’s very hard to get one’s head around, even 3 months after diagnosis and 15 chemos later. Who? Me? Oh right, me. Me. ME. There are moments when I forget it, then I catch my bald head in a store window. Me.

So far though, and this seems ridiculous to say, but I believe it has brought more positive into my life than negative. I am certainly paying more attention. I have connected with people from past, present, and future in ways that I am pretty sure I would not have otherwise. I have received more presents than any person should on a not birthday/not Christmas. I have gotten to fly in little tiny airplanes and private jets flown by incredibly generous pilots (PALS). I rarely pay for a meal out (really folks, stop that, you’re embarrassing me). My daughter has come home to stay for a few months, hang out, help out, and watch Supernatural! And then there is Judy.

Last Thursday my brother Greg called on his way back from Brimfield, an antique show he does seemingly 80 times a year but actually 3 I think. He often calls when he’s driving, to check in and stay awake (we both are sleepy drivers, often having to stop and snooze a mere 20 minutes away from our destinations… lame but safe). His phone started breaking up as I heard him say “So it sounds like Judy… not… very well. May be… to .. end.” Me: “What about Judy? I can’t hear you! What about Judy?!” Then he repeated what he said before with different words missing. “Is something wrong with Judy??” Finally, “cancer”. So apparently my friend Judy Carlhian has had ovarian cancer for 5 years and NO ONE THOUGHT TO TELL ME (I’m looking at you Greg and Gioia).

From left: me, Elizabeth, Martha, Laurel, Eileen, Ruth, Judy, Karrin for our O2B4T birthday extravaganza.
What a difference 19 years makes, eh?

Judy, Gioia, and I were the 3 girls (oh fine, young women) in the Northern Studies program at Middlebury in 1981. We lived in Wolcott, VT, albeit in different houses, and attended the Center for Northern Studies there. We traveled to Newfoundland and Labrador, cross-country skied to class everyday of the very long winter (where it literally snowed everyday, heaven!). It was a magical time full of words like: boreal forest, glacial geomorphology, bergy bits (the little, or not so little, pieces that calve off of icebergs, yes, calve, isn’t that a cool way to put it?), puffins, Equisetum arvensii, Solidago canadensis, Gandor, and Red Bay. I could totally go on but will refrain for you non-northern studies majors.

Judy and Gioia came to Wolcott already fast friends. I have been forever grateful that they let me in to their pod. I felt unworthy, they seemed so capable, so “outdoorsy”, so worldly, but that’s typical of me at that age (yes… and now occasionally).

Fast forward 38 years and we have seen each other times that can be numbered on one or two hands. But those times were always pretty joyous, very much having to do with who Judy and Gioia are, effusive, loud in a good way, loving, with great hugs. And now I get this news of Judy’s illness. I got off the phone with Greg, googled and googled to try to find her number (thank goodness someone in the world still has a land line! and unsurprising that it would be Judy). Did you know that Waltham, VT has an online phone book? I didn’t and it’s the first of its sort I have ever seen but there was Judy’s number (thank you Waltham).

I called not knowing what to expect. Would a caregiver answer? Was Judy strong enough to answer? Maybe one of her family? So a woman answers and I ask if Judy is in and she says “speaking?”. And I say “Hey Juday (because that’s what I always called her), it’s Mary Hamilton” “MARY HAMILTON!? MARY HAMILTON!? Wait, I have to get the jam off the stove.” (apparently she’s strong enough to answer the phone). I hear her put the phone down and as she’s walking to the stove, she’s shouting MARY HAMILTON!

And that was that, I went down to Waltham under Snake Mountain the next morning and hung with my old friends Judy and Gioia and it was, you got it, joyous. We talked about family, the past, mortality, birds, mountains, and we ate watermelon, fresh peas from Gioia’s garden, sweets from the Vergennes Laundry, assorted soft cheeses. And it was real, and sad, and funny, and the absolute best.

As I was driving home I pondered if I would have taken action, or if I had, what kind of action, with this news years ago or even 3.5 months ago prior to my own diagnosis. I suspect I would have thought “Well, we haven’t seen each other in years. She’s got her friends and family. What can I add? What would I say?” etc. etc. etc.

This is where Freedom comes in. Having cancer gives one (me) the freedom to just do that thing I want to do, shoulds be damned. And treasures appear when I do. I am reconnected with Judy and Gioia and that makes me remarkably happy. I say I love you way more than I used to and as most of you know, I already said it ALOT. I forgive more easily (and I forget a ton so that works out for all of you) and I apologize more easily. All in all if this cancer doesn’t kill me, I am pretty sure I’ll come out of this a better person. And, if it does, I am pretty sure I’ll come out of it a better angel.

Freedom by Richie Havens, Woodstock (click for performance)

Best Things, Worst Things About Being Bald

Best: You can shower WHENEVER YOU WANT because you don’t have to wait 3 hours for your hair to dry and that includes RIGHT BEFORE BED when you are hot and sweaty. So you slide into your sheets all cool and clean to find that your cat threw up under the covers. Thanks Primrose. Think I’ll go shower again.

Worst: Your finger nails don’t get clean while washing your hair because you don’t have any so you actually have to buy a fingernail brush.

When Your Friend Aces the Test

We all received the most excellent news from Mo yesterday. You will recall that Mo came down with this totally rare cancer 9 weeks before me (I think you do not know what rare means IBC). Well, after the most grueling of chemos with every fecking bad symptom you could have, her pathology results from her mastectomy came back with her breast and nodes clear of cancer!!!! Woooohoooo! That is an enormous step, but yes, it is just one step. IBC is cagey and likes to return so there is radiation and then hormonal infusions after that for 10 months. But that’s one hell of a first step.

And snuggled in my happiness for Mo is this little black doubt seed of my own making. In this exceedingly rare and aggressive cancer, what are the odds that two people who know each other and got the cancer within weeks of each other both have excellent outcomes? Should I have signed up for this trial? What if it’s a total bust? What if I don’t ace the test?

I have been filled both with a kind of survivors guilt over how well I have done with chemo, very little sickness, just a bit of breathlessness and fatigue, and being proud of my body for handling it all so well. Friends call me a “model patient”. Then while visiting Gioia and Judy, Gioia talked of the first couple years after Judy’s diagnosis: “she was a model patient, walking all the time (me too), gardening (me too), etc (me too).” Uh oh went a little voice in my head. So… being a model patient does not necessarily correlate with outcomes. Sheeeit.

And then again, that freedom somehow kicks in. “As we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know” (name that politician!) and we can’t know them til we do. So we pay attention, we do our best, and we show up (thanks yet again Becca).

So your homework for the week, or until I write again: pay attention, do your best, and show up for those you love, and even those you don’t know like the homeless guy who sits at your exit every day. Give him some change.