About those daily downloads of intuition.

I had spent most of the three months between my diagnosis and surgery terrified. I think when we are that deeply jarred by a life event that seems to come from out of nowhere, we don’t always have an awareness of just how frightened we are at first. I didn’t. I just put my head down and did what I had to do. Doing what needs to be done, as my surgeon reminds me, gives us focus and keeps us from collapsing in panic. The levels of shock and autopilot we travel between can serve a really good purpose, which is that they keep us alive and functioning. Later, there will be emotional work to be done sorting through what we had to put on hold, but in the midst of a trauma it simply isn’t the time and we just do not have the capacity.

I began to get a sense of how much terror I’d been dealing with when the fear lifted for a spell during the week between Christmas and New Year’s. We spent that time with friends in San Diego, when it just so happened that I started sleeping well again. Night after night I enjoyed 9+ hours of the most delicious nocturnal reverie, which would begin by me passing out right as my head hit the pillow and continued with me not stirring at all until the sky began to lighten. Some mornings I’d rouse a little and then fall back asleep for at least another hour. Total luxury.

And I took naps too. One day I took two! Waking up from nap #2 that day, I wondered incredulously just how long it had been since I’d been able to sleep so truly well. It would have been before my husband had gotten sick three years before.

All of the labor of the twelve weeks since the tumor was discovered was complete at that point. It had taken the time and energy equivalents of a full-time job to manage all the logistics — diagnostic tests, doctor’s appointments, second opinion consultations, in addition to educating myself about the type of cancer it was, and being constantly in touch with friends and family about all of it.

And then there had been the intangible but possibly more real labor required of me, which was emotional and spiritual and more demanding than anything I had ever faced before. I’d had to face the fact that even without my consent, my life might be ending.

Which meant facing the fear that if I died I’d be orphaning my children.

The only way that I knew how to cope with the desperate enormity of all of this was to use my intuition. It’s my walk and my talk, how I have lived and worked for almost thirty years. While my husband had been ill I’d received such clear and detailed information that I began to reassess my abilities as a medical intuitive, something I hadn’t ever felt fully comfortable claiming before then. I also spent at least as much energy arguing with myself about what I’d unearthed. It wasn’t until afterward when I actually charted out all the information I’d received that I saw how little of it I’d allowed myself to trust. From the moment he was diagnosed, I’d known more than the doctors at every single point of his cancer’s progression.

It was possibly the most painful experience of my life knowing what I knew. I certainly couldn’t share any of it with anyone, not with my husband who was in the prime of his life and in shock about his diagnosis, nor with anyone else who loved us and didn’t want him to die, and certainly not with the doctors who only trust what they can observe. They in particular knew exactly what they were dealing with in gastric cancer. A rare, lethal form of the disease that they had limited means to treat. I can only imagine what that would be like, to have a seriously educated guess about what was going to unfold and yet to know that the one thing they wanted — to save my husband’s life — they would be unable to do. And because palliative care is still an emerging priority in most medical communities, doctors don’t really understand what it can offer and instead stick with stubborn reliance on the treatments they have, while communicating best-case scenarios continually, which they did in my husband’s case until it seemed to me almost deranged.

The hours I spent obsessively trying to match what I was receiving intuitively with what others were saying and doing was my narrow path through a horrible situation. It was a way to cope with my real pain, which was that my husband was finishing up his work here on the planet. That his time had come.

I don’t think the labor of dying can be evaluated using our usual standards of completing a task well. We talk about having a “good” death, but what does that mean really? It means as many different things as there are people who die, which is all of us. How do we begin to envision an ideal death when most of us would prefer to avoid the subject entirely?

Usually, when we work on a goal we have an eye to producing results. We have some ideas of what to do or try to do, that we think will get us what we want and need. But dying is an experience that calls the shots whether we like it or not, and we do not get to state our terms. Even if we have a vision of what comfort and peace in our last days looks like, there is absolutely no requirement on Death’s part to comply with our plan. Terminal illness is quite the moving target in that sense.

The acceptance required to be at peace with the fact that we are running out of time is a transcendence that is worth achieving, also woefully under-facilitated in our culture, and therefore more rare than it should be. We can get great hospice care if we know how important it is and how to ask for it. But unless we die abruptly, in which case our dying is immediate and our consciousness of the event is limited, knowing we are going to die is a loss that seems impossible to fully grieve.

Because clearly the one task required of us to die well, is well, to die. There’s no way to achieve victory over dying, especially if you feel you must kick it in the ass by will and brute strength. Like many of us, my husband chose the only option afforded him in this pickle. He approached illness and death by rejecting both. He refused to allow any reality of what was happening to him into his consciousness. He became the most virulently positive thinker I had ever seen.

So while I kept looking for an opening through which to give him an optimal death experience, using all of my training as a hospice volunteer and all of my intuition about what was happening in his body, he simply did not want to die. He could barely admit he was sick, one of the reasons it had taken him so long to be diagnosed.

And strangely, the sicker he got, the more time he thought he had. Until finally, two weeks before he died, when he could barely walk, couldn’t swallow enough to eat or drink, had stopped producing tears, was on morphine that was increasing daily, when yet another doctor was offering him more chemo and I was in her office chewing my cuticles off until they bled in an effort not to start screaming at her, I realized that if it were left to them they would rather kill him faster with procedure after procedure and treatment after treatment, than simply admit it: he was dying.

So what on earth was I going to do this time around?

When the fucking c-word — cancer, which is in my opinion way worse than the other one — had inserted itself back into our daily vocabulary?

Well evidently and first of all, I was going to forgive my husband and myself and all the doctors and the legions of folks who’d offered us so many well-meaning and multiple suggestions on what to do to keep him alive and win at death. For a long time, mostly in the middle of the night, I would wake up and cry and cry and cry, realizing on a whole different level how utterly terrified he’d been and how much he did not want to leave us and how he literally could not get his mind around what was happening to him. His cancer was so aggressive that even if he’d been able to get a grip on what was happening it never stopped long enough for him to catch his breath. I forgave him the shock he was in that never lifted. The wake-up call that he never answered.

I didn’t know it at the time, but I was allowing the deepest levels of my grief to surface. My horrifying sadness about the fact that any of this had happened in the first place. No longer struggling to cope with any of it, freed from needing to help him or our children deal with it well, I just let go of the how of how it had happened. The what needed my attention. Gone was the need to make something good come from it or the struggle to help someone die who wasn’t able to admit he was dying. I surrendered to the story that actually was.

Second of all, it became clear very quickly that my husband’s gastric cancer and the tumor growing in my right boob were about as different as two types of disease could be. He’d gotten stuck seated by the bathroom on some discount cargo airline while here I was flying international first class. The tumor in me had probably been in there for years it was so slow growing. His cancer had set up shop in his stomach, esophagus and lymph nodes before they even knew it was there. Although his doctors had all seen cases that defied the odds, they were very rare. But I already knew multiple women that had survived what I was going through and I had a top-flight team of doctors and nurses coming to my rescue with real solutions, even using the word “cure” more than once.

As I worked through these pieces with an increasingly well-rested body and brain, I began to consider that maybe sometimes the absolute worst timing might be the best timing after all.

All the information I was getting, intuitively and otherwise, added up to this: I was facing my mortality, not my imminent death. After having just watched someone I loved run out of time, everyone (including me) had just assumed I was probably going to die.

I mean, I was. I am. Someday. But not just then. And not now. And not from breast cancer.

Immediately before surgery, I would have dye injected into my lymph nodes on the tumor (right) side of my body so the surgeon could inspect them more thoroughly to confirm any suspicious enough to remove. During the surgery, the entirety of my breast tissue would be removed and since I was having reconstruction, tissue expanders (think empty juice box boobies with a magnetic portal for saline injections instead of a place to insert a straw) would be slid into place behind my pectoral muscles so I would be all set when it was time to begin the saline fills that would turn me into a real life Growing Up Skipper doll. Then when I’d gotten to the size that felt right to me, the saline implants would be swapped out for silicone ones in a second surgery.

The recovery time would be 8 weeks if everything went well.

During that time, I would be receiving the final pathology for the tumor as well as the Oncotype. The Oncotype is the score that shows what if any positive effect chemotherapy would have on my particular situation. The lower the score, the less likely chemo will be considered as part of treatment because chemotherapy has liabilities of its own that are not worth undertaking if the effectiveness of the chemo isn’t indicated.

Since I was having both breasts removed entirely, there would be no radiation.

Putting in the tissue expanders during mastectomy surgery created a future for me. Waking up with no boobs wouldn’t be that easy for me, but at least those Capri Suns inside me would be a reminder of a future when my breasts, while not my original set, were restored.

I had three pre-op appointments. The first was a quick visit with my plastic surgeon. Then there would be two back-to-back appointments dealing mostly with surgery prep a week before the big day. Danielle, My Buber ™ driver and one of my closest friends, would be handling transportation and support of the patient (me) to all three appointments. Danielle should be everyone’s first choice to help with these tasks because:

A) She is the Best Note Taker Ever. She’s amazing to have with you when you are trying to listen to doctors and nurses tell you stuff that they know a lot about and talk about every day but you don’t. If you’re like me, besides recognizing the words “breast cancer” and knowing it’s something you sooooo don’t want to have so unbelievably much right at that moment, you probably have never had a conversation about it using the same level of serious attention you will when it has taken up actual residence in your own actual body. And you’ll be trying to listen very carefully and come across as intelligent and concerned but you still won’t be able to stop freaking out about most of it which will mean you’ll have no extra energy to decipher many of the medical terms and treatment possibilities being bandied about. Even though you’ll ask at least three times about everything. Just wait until the first time you hear the phrase “nipple conservation” and— WHAT IS THAT ANYWAY, JESUS I FORGOT I HAD NIPPLES INVOLVED IN THIS TOO— this will inspire you to the conclusion that the next time you’re on a flight and the attendants do their safety shpiel, you are actually going to pay attention to them and then read the goddamn safety information card like they ask. Twice.

But Danielle is there and will make sure you have all the information you need — in writing — and also will put super helpful tidbits of extra information in there like, “We like Yuri (handsome Harvard Medical student). He is young. He felt you up. I am jealous (probably could have kept this to myself)” and, “We like your surgeon, who wore a great green dress and has amazing shoes (Brand: Sofft),” and “Remember to write down all your supplements and btw wtf is noni berry??” Oh, and she’ll title her notes, “Boobs: A Love Story. Written By Tits McGee.” When I reread the real shit she was supposed to be writing down, not the stuff that makes me cough up a lung laughing, I am struck by the level of really amazing detail she was able to so easily grasp and relay. Unlike myself, who noticed things like the aforementioned shoes belonging to my superhero oncology surgeon. I bet you are wondering did I actually open my mouth during this very important consult to ask her about them? I did, because I’m sure my doctor kicked ass all the way through college, medical school, residency, and her internship to have her patients be interested in her footwear.

God, they were cute though. And that dress really made her eyes pop.

B) Danielle is not only deeply funny in the darkest, silliest, most unhinged way possible, she also swears like a sailor. But imagine what you think a regular sailor hears when they listen for the first time to the other sailors doing perfectly acceptable sailor swearing but who’s thinking, “Challenge accepted, Mofos! Because I’m gonna kick these mothballs posing as words right to the curb in favor of some verbiage with style. Watch me drop words like shitfuckballs, shitsticks, dickpurse, shitbox, and fuckwaffle with impunity hither and yon, you bunch of fucking crapweasels currently sucking a bag of dicks. You’re welcome you cunty fuckbags!”

As far as she’s concerned, cancer can get fucked in the ass by a cactus. Without lube.

Note: she does not talk like this during doctor’s appointments. Admittedly she mostly talks this way when she’s awake, but she keeps it clean when there is the possibility someone might call for a psych eval.

C) Also, she talks this way driving you to and from multiple doctor’s appointments in the world’s largest car. Think of the biggest car you’ve ever seen and then add 20% to what you’re thinking. Her car’s bigger than that. I seriously think it might be a boat. It’s also a mobile communication center with wifi and extra chargers for all your devices and it’s full of your favorite snacks and water so you stay hydrated. (Your hydration is very important to her). While you’re traveling thusly in style you can watch and listen with amusement as she philosophizes on a number of interesting topics like proper signaling and right of way with all the other drivers. Who she thinks can hear her. Because seriously who told that douchecanoe they could use that lane?

D) She lost a dear friend to cancer several years ago.

It was horrible. And her friend was too young. She had little kids. Danielle helped her friend and her friend’s entire family all the way through the down and dirty end. And for the afterward, which is harder.

So for Danielle to show up for me and my family’s own personal cancer cluster was the most courageous and touching thing I think I’ve ever witnessed, let alone been the beneficiary of. When I think about the risk it was for her to love us through all of that, it is with reverence and awe. It makes me so incredibly grateful, so amazingly happy, and brings me so much peace.

Even more than when she tells me to shut my dirty whore mouth.

If you’ve ever been in a medical waiting room, then you know they are a very strange form of uncomfortable. Nobody really wants to be in there, right? You’re there because you have to be. For an intuitive, there are all sorts of spots in hospitals that are fraught with an intensity of energy that makes me reflexively put my “shields up” so I don’t get into trouble later, especially main entrances through which people are coming and going all day and night while simultaneously having all sorts of feelings about who awaits them or who they’ve just visited. I’ve been known to go on a random crying jag or suddenly find myself so wiped out I need to take a nap just from walking through a hospital lobby a few hours earlier. I avoid the elevators too for that exact reason, preferring to take the stairs because hardly anyone uses them and they are a quiet place to decompress.

But being in so many hospitals and doctor’s offices because I was the one who actually needed to be there was requiring me to up my game a bit. Not only was I susceptible to absorbing any storms of emotional energy from all the folks around me, I had my own feelings going on inside me too. I can’t say I was rising to the occasion, however.

Danielle and I arrived at the second of the two appointments in the Brig feeling pretty damn good about ourselves. We were on time, which had been a major accomplishment since we’d gotten lost 18,000 times trying to navigate from the first appointment to this one and we’d stopped to ask for directions about as many times. I had been a complete liability. I wasn’t paying attention to any need for punctuality, having remembered the far more important and funniest thing I had to tell Danielle about the pre-op appointment at the plastic surgeon’s the week before, and I couldn’t stop laughing as we walked through the byzantine halls focused as I was on the far more captivating factoid that they’d made me take a pregnancy test. A 50-year old widow with two teenage sons who’d just been diagnosed with a tumor in her boob? Total pregnancy risk.

It was classic deflection. I’d thought these pre-op appointments would be a breeze and that their main purpose would be identifying what if anything might accidentally kill me on the table thereby avoiding said accidental death. But I discovered they were also designed to educate patients about all sorts of things about post-op care that are way more involved than I had imagined, and I felt like they were trying to cover every worst-case scenario you could possibly imagine. As if a breast cancer diagnosis weren’t bad enough, I had to consider that there might be unresolved swelling in my right arm forever and so I’d need physical therapy forever as well as other bad things that last forever that I can’t even remember now because they didn’t happen, but also because it upset me so badly I immediately blocked them from my awareness with the pat thought, “That won’t happen to me.” I left with a coupon for a surgical bra which was the ugliest contraption I had ever seen, and a real need to get the hell out of there/pretend none of this was actually happening to me.

Danielle, who had obviously been very stressed during our adventure through The Brig dealing with me going for cheap laughs while she was trying to get us from point A to point B, and who had also noticed that everyone who gave us directions had various Starbucks cups in their hands, wanted to go to Starbucks immediately after we arrived at the second appointment.

So I sat down and began to fill out a series of consent forms, medical histories, and other surveys that could have easily filled an entire 3″ binder. I was eligible for many different lifetime studies that would potentially help other breast cancer patients, and those required my signature about a gazillion times.

Once my paperwork was complete, I tried to meditate. Which was not easy because all I could think about was the Venti green tea lemonade-no sweetener that was on its way to me. When Danielle returned she was surprised to see me still in the waiting room, and together we realized it was nearly 40 minutes after my scheduled appointment time.

They were running behind. There were more than a dozen people waiting with us too, not a good sign. Every so often, but not too often, a nurse would come out and call a name and someone would get up and walk back into the exam rooms with her. Another 30 minutes went by while we sat there, during which and for a total of three times, the same nurse came out and called a name that hung in the air with no response.

“Faustus Carmichael?”

Then she came out a fourth time and said “Faustus Carmichael?” in a tone that indicated her voice had its hand on its hip a little bit. There was no response as usual, and then she must have decided she was all set with this interloper. She raised her voice and called their name again, holding the syllables together with what was clearly bored frustration. “Faustus? Carmichael??”

Nothing. Finally, she bellowed it across the room with no reservations whatsoever. “Faustus Carmichael?! Faustus Carmichael! Is there anybody here named Faustus Carmichael??!”

And from the very back corner of the waiting room, from a chair blocked to our view by a bank of partitions, came a ponderous response in a man’s deep timber.

“I’ll be goddamn Faustus Carmichael if it will get me out of this waiting room faster.”

The entire room exploded in laughter.

Afterward, we headed to dinner to wait out the rush hour traffic that had begun while we were in the Brig. The nurse had suggested the Museum of Fine Arts nearby, which had a good restaurant in it (actually there are three), and we were tired and hungry so we just headed there.

Turns out she had neglected to tell us that you have to be a member of the museum to eat there. I was already not a fan of hers and cranky because at the end of my appointment she’d tried to get me to agree to drink two bottles of red Gatorade two hours before surgery, which made me scare the bejesus out of Danielle who was busy taking notes (I think it says “WHAT IS HAPPENING” in that part) as I replied, in a voice about as cold and non-compliant as they come, “I won’t be doing that.”

Seriously? Red fucking Gatorade? She’s telling me to drink tumor juice immediately after she’s told me I also need to stop absolutely all food and liquid by 10 pm the night before? “You do know why I am here, don’t you?” I asked her. She looked at me with the face of someone who had thought things were going very well and who suddenly realized they were not. At all.

I had literally had it. I’d reached my limit. I had been a good sport or had at least tried to be about every single fucking thing that had happened to my kids and I, losing my husband to an aggressive asswipe of a cancer including having to endure doctor after doctor avoid telling him the truth while they were proceduring him to death an hour away from home for weeks near the end, so certain they were doing the right thing despite all of my attempts to get him home so he could have time with our kids….then being diagnosed myself just as we were pulling up as a family who’d survived the way more difficult year after he died. All of it. I had looked for the silver linings everywhere, I had been strong and funny and sort of graceful most of the time if you do not count the times I slammed doors, (which the social workers told me was ok, something about how it showed my kids I had real feelings about what was going on) but I drew the line at putting artificial color and flavor and goddamn flame retardant in my tired body, which had recently been host to a massive immune system failure. Everything just stopped making sense in that moment.

That poor nurse. She didn’t know that it had also just been confirmed at pre-op appointment #1 that in my case, a double mastectomy meant losing my nipples too (I’d say “duh” here except that some nipples are indeed able to be conserved) and that additionally, I might never get any sensation back in the entire swath of my chest where my breasts had been. All afternoon, underneath all my wisecracks and dark humor, the penny had been dropping along with that piece of patient education.

So, okay. Sex and feeling sexy might never be the same again. Great.

Given how committed to hydration Danielle is, it was no surprise that while I was staring daggers at the exam nurse who was stammering through an explanation of how the hospital usually issues pre-op patients an electrolyte-type beverage that they were out of (hence the red Gatorade mandate), because studies had shown it increases the chances of a good recovery for surgery patients, D was whipping out her phone and within minutes had ordered the exact drink via Amazon Prime and had it shipping to me. “Done!” she called out chirpily, in just the way that someone who is hoping weapons were not on the verge of being brandished would chirp.

I did not promise to drink it post fasting. I said I would think about it. I had never heard of anything so ridiculous and I was all out of charm. But I stood down, safe in the knowledge that I would not be forced to drink the red poison.

Later, standing at the museum admission desk while we considered whether to spend $25 each to gain access to the museum and therefore dinner, I felt smugly confident that the Gatorade nurse’s obviously loose grasp on basic details like who could and could not eat dinner in the museum restaurant was another clear reason to be dismayed. Suddenly, this whole Major Life Event business, which was separating me from my breasts was also making me feel very, very alone. Like the Universe had forgotten about me.

One week later, on the last afternoon before my surgery, being that it was within the Museum of Fine Arts’ ten-day window allowed for such transactions, I returned there to exchange the day passes we’d bought for our access to the restaurant toward the purchase of a year-long family membership.

I figured I was going to be in Boston a lot throughout the next year and that I might as well make some lemonade by combining doctor’s appointments with visits to the museum.

All week I’d been thinking and grieving about what was going to happen to my body and me. I was sad but calm again. The electrolyte drink was in my overnight bag at the hotel where I would be staying with my BFF of 40 years who had flown in to be with me throughout the entire hospital stay and for a week afterward. I was saying goodbye to my breasts, but I’d decided to look at it this way: I wasn’t having them amputated, rather I was sending them off to a superb retirement. They’d earned it, after all. They’d brought me pleasure, made me feel beautiful, and had nourished my babies. I was still very, very anxious about the effect it would have on my sexuality but I also knew that there were many women who had gone before me in this. I would not be alone no matter what happened.

It was a huge loss, but I was going to be okay. It would be my experience to have and to own.