nothing is falling

It has been an awfully long time since I've written anything here. It turned into a space to air my negativity, which, in turn, made it a space that fueled my negativity. I didn't need any help in that arena, so it seemed best to leave it alone for a while.

A lot of things have happened. There is a spot on my liver and another on my lung. We don't know what they are, but in six months they haven't changed. Maybe that's something, and maybe it isn't. In another six months, and every six months for the foreseeable future, we will keep looking.

I started and finished a course of radiation. It was hard and painful and exhausting. My skin burst and I got terribly sad.

I started new meds. One is a monthly injection that stops my ovaries from working. Another is a tiny pill that stops estrogen from being produced in other parts of my body. One treats the side-effects of the other two, which initially gave me terrible hot flashes and wreaked havoc on my sleep.

A mass has been removed from my right breast. The surgeon is confident that it is a cyst. The official pathology report hasn't come in. I've spent months in fear of this little bump, hours lightly prodding it, as if I could will it away or coax some sort of confession out of it. And now it's gone. There is relief in its absence, and in the doctor's confidence in its harmlessness. Official word is due by Tuesday.

This morning Jason when on vacation. There have been a lot of times over the course of the past two years when I would have asked him not to go, when my anxiety that the other shoe had reached its precipice was too big, my need for him too pressing. But I've been working hard on planning for life even if we're waiting to hear that there may be more cancer and so, fuck the other shoe. I'm sick of waiting for disaster to befall me and sick of not making plans because another disaster may be just around the corner and because I haven't really gotten  break from searching for the next catastrophe. Jason going on vacation is an important part of this business of not waiting. He's tired of waiting, too. I'll spare you the details of our discussion--part totally rational adult, part pep-talk.

I bought myself a plane ticket to visit friends I see too rarely. I called DHS to talk with them about adoption, and I called an agency we may work with. I have a fun plan every weekend for the next month and a half. I'm joining the Y with one of my dearest friends. We're making plans to fix up the house. The snow is melting. Jason is nearly done with his degrees. I'm probably cancer-free. Life, it would seem, is good. Shoes or no shoes.

easier

Last night I went upstairs with Jason. He was getting ready to hop on the elliptical and I was going to read in bed. I sat down and instead of reading, I found myself crying, not for any one reason but because sometimes this is all just so impossibly sad.
We had seen the oncologist earlier in the day. She explained my new medication regimen (ovarian suppression + an aromotase inhibitor*) and that it kicks our possible pregnancy efforts another three years down the road. She talked about chemo and how it could offer a small benefit, but also carries with it the smallish risk of permanent neuropathy and damage to my ovaries. She also used the word "curable" in reference to my disease. Curable. And that sounded like magic, a glistening possibility amid so much very darkness.
Still, I get sad. See, I spent so much time and effort adjusting myself to an end to surgeries and a date not so terribly far off when we could try to have a baby and I gripped it with all my might because I needed it so badly. I needed it to reassure myself that some new version of normal was out there. That life would go on and that it could be long and full. That it wouldn't all be cancer and fear.
And then this. I feel positively sucker punched, a stunned, gasping sort of feeling. And some days are harder than others.
So I sat and cried, and Jason brought me tissues, laid next to me and kissed my surgical arm, listened at the times I could talk and at the times when I couldn't. He picked up The Princess Bride from his bedside table and read to me (The Princess Bride, it turns out, is rather hilarious) until I fell asleep, able for the first time in weeks to sleep (as I normally do) on my side.
I woke up this morning to a kitchen full of treats: a red velvet cake cooling in two pans on the stove, an enormous balloon, a card, a bottle of fancy juice in the refrigerator.
Today is our third anniversary.
I wish everyone had someone who could make them feel so wonderfully cared for. It makes these days easier, and I'm grateful every day.

differences

There are, most likely, some differences between you and me--namely, that I have a disease and hopefully, probably, you do not. It changes things, this cancer. A lot of well-meaning people (whom I adore) are quick to remind me that anyone can die at any time--right out of the clear blue--that tragedies hang around in secret places for everyone and fall upon them unpredictably. I know. But the spectral reality of the unforeseen and the wonders and disasters it may hold are vastly different from the palpable disease I've had twice now. This is no potential errant teenager texting a friend from behind the wheel while you head home, happy, from the farmers' market. This is a disease that has twice demonstrated its very real aggression, showing up after extensive surgery, chemotherapy, and daily medication. It necessitates a new response, in turn aggressive and persistent. It means that the future that unrolls before me is probably laden with more snags than yours, and it may well be shorter. I'm not being gloomy, I'm being realistic. This is true, and I have to parse out how best to hold that reality, to swallow and store it safely, because I have a life to live in the meantime.
I am certain that every person who has reminded me that we may all get hit by buses or swing through Colorado and pick up the plague has meant well, has not intended to diminish my experience. But those risks belong to everyone, collectively they are meted out in tiny doses and then carried, a little particle by everyone so that our measurements of the risk may remind us of their very smallness. Mine is a more precise risk that I have no choice but to possess all to myself, however much support and love you all provide. And it is lonely, achingly lonely in a way that squeezes my heart and leans on my stomach.
My math just isn't the same. And I'm glad for that, impossibly relieved that this sort of burden is not widely borne. I want you to be healthy with dependable longevity. I don't want you bulldozing the terrain by creating fears of your own; it feels dishonest, or at least, beside the point.

surgery again

Tomorrow I will have another surgery to remove cancer from my chest. This time the disease has taken up in the skin, a soft-tissue recurrence. The surgery is outpatient and therefore promises to be a fairly minor procedure. Skin will be removed, lymph nodes will be removed, all will be sent to pathology to look for more cancer cells and I will be sent home, ostensibly cancer-free. Easy.
But I can't shake this irrational thought that I'm in for the first surgery I had two years ago to remove cancer, the one that left me utterly dependent and in agonizing pain, the one that coerced my very willing mother through her breaking point, that was followed by weeks of surgical drain maintenance, pain-medicated fog and stretches for my arm that wanted so badly to seize up and move less forever.
But it isn't that surgery, I know. Regardless, I am scared for reasons both rational and irrational. The surgeon is, after all, looking in the lymph nodes for more cancer and finding cancer in the lymphatic system would obviously be bad news. I am also scared that she will find easily clear margins around the tumor and that the nodes are spotless. Because if those nodes are clean and if the margins around the tumor are small and clean, that means, from a medical perspective, that I need only minimal adjuvant therapies. But I don't want minimal follow-up treatments. I want everything. I want radiation and chemo and stronger daily meds and another mastectomy and to be stripped bare of every organ and bit of skin, laid out on a table, scrubbed clean with cell-destroying antiseptic, and reassembled, safe. Because I do not feel safe. Because we did everything we could do the last time around and here I am again, with this fucking disease and I just want it gone. So I do not want to be told by any happy doctor that this lucky patient can get away with just a short round of radiation. I can't feel the security in that, though I know it's there, right on top, waving its jubilant little hands. I recognize that this perspective is coming from a place of fear and damage, so don't go thinking I'm all irrational all of the time, I'm not. Just scared.

lucky

Seven years ago Jason came back to Kalamazoo. He had just finished four years of military service. I was in the throes of ending a miserable relationship. We hung out, as friends, like we did whenever he returned to Kalamazoo on leave. We went to the park. We went to see his mechanic, who gave me flowers. We ate ice cream at the Frosty Boy. We had a drink at a tiny, dingy bar. I remember the day in lovely snapshots: laughing on the swings, the sun through the windshield, the mechanic's dirty coveralls, both of us laughing and fighting with ice cream, the longing to never go home. We had spent four years apart and still, I was impossibly, hopelessly, giddily in love.
This evening we went back to the Frosty Boy, and rather than looking across the table at the person I wanted so desperately to build a life with, I got to look at the person with whom I share a life and all of the wonders and nightmarish bumps it has handed us in these past seven years. We said less tonight, sharing a relief too big for words, the relief of a clean bone scan and no metastatic cancer. The relief of less cancer.
Sometimes, you get lucky.

looking

I always panic when they break out the needles. I know it promises to hurt very little, and that compared with other pains I have experienced, the prick of a needle is, well, just that. Even so, I breathe quickly and tap my hand frantically until Jason comes to hold it. And while the nurse is wishing I would just calm the fuck down already, he mouths to words to terrible pop songs to distract me. In the end, it's never as bad as I think it will be.
I panicked again when the bone scan monitor zeroed in on me like a slim, high-tech light box printed with grid measurements. It sank quickly toward my face, stopping just short of my nose to hum and scan, like being pinned under the abrasively curious eye of a robot, suspiciously lacking the breath that ought to have been heaving in my face, searching my bones with such invasive rigor, clueless as to the consequences of its findings.The attendant strapped a tight band of elastic around my arms and feet as though patients are apt to make a break for it. I understand the temptation.
I prefer the CT scan, which, while very similar to the bone scan, is significantly shorter and only entails passing through a narrow cylinder where x-ray beams work in concert to create a complete image of my insides. 
I knew that we wouldn't learn anything today, but the hopeful puppy in my heart kept its nose upturned, sniffing, thinking that maybe--just maybe--some kind doctor would come out of the control room and declare these scans undeniably clean. Just so I could sleep tonight. Or read. Or write the many lessons I haven't yet written. Or do anything but wait.  
No such doctor appeared.
And so we wait, again, with hope and fear, thumbing each possibility over and over. Learning a pocketful of beach stones by touch.
Metastatic disease is just...sitting there, being possible, a sinkhole under the road waiting to be discovered. Unknowable. Disastrous. Nonexistent?
Please, Monday, get here quickly. 

here we go again

Tuesday I went to the East Ann Arbor Medical Center for my last reconstructive surgery, eager for the relief and healing that lie on the other side of anesthetized sleep. No more surgery. A reclamation of my body. A bit more rebuilding in service of moving on to my life, whole and healthy. A small knot of scar tissue was removed and sent to pathology, just to be safe. Fat was grafted onto new locations to conceal where it had been cut away in previous operations. I awoke in high spirits and feeling rather like I'd been run over. Intense pain or not, here I was sitting at the end of a two-year long operative journey. What sweet relief.

I got a phone call Wednesday afternoon. I recognized U of M's number and answered, anticipating a nurse on the other end asking if I was doing alright, and for a moment I was so touched that my surgeon of the hectic OR schedule would call to check in on me. "Sara," he said in his typical mixture of urgency and gravity, "How are you doing? Is Jason home with you? I have the results from pathology...the tissue we removed is cancerous. You are having a recurrence. Dr. ... will call you within the hour. Are you ok? I'm so sorry. Would you like me to talk with Jason?"
Ok, thank you. Yes. No. no no no no. Yes. No. Thank you. thank you. My voice shrinking, heart racing, hands shaking.

June 11, 2012. Late Monday morning. Jason is at work and I am standing at the top of the stairs, looking out the window when the phone rings. It is the curt PA from my primary care doctor's office, ironically named Joy, calling to tell me I have cancer. Time stops. I call Jason. By the time I manage to drag myself downstairs, he is home. An instant.
In the days that followed we called everyone to tell them The News, saying it so many times over it started to lose its meaning. Phone call after phone call of me, steely and numb on one end, while family and friends were thrown into shock and sorrow on the other.

I made some of those calls again last night, listened to my aunts beg it away and try to rationalize an unpredictable phenomenon that offers no explanation for its presence. It is just here, for no particular reason at all. A trick of replication, a miscommunication, an accident of biology.

This morning a nurse called to let us know that I had an appointment in breast imaging. For a moment I was sure this wasn't my life. I could so clearly see us there, holding hands flat on our backs in bed, staring wide-eyed and groggy at the ceiling, wishing with all our might that we didn't have to get up to go in search of more cancer.

At the appointment, an anxious nurse who clearly had not looked at my chart before coming to see me asked questions about my medical history and failed to hide her surprise at the sheer number and very recentness of my operations. She took me to the same ultrasound room I visited two years ago, where a calm radiologist informed me that a series of precancerous lesions would necessitate a mastectomy. I lay on the same bed in the same position while a new doctor ran the same ultrasound wand over the same breast looking for new cancer. What she found was an ill-defined tumor, warped by the seeping and swelling of the post-operative tissue, and ominous calcification in the surrounding skin.

There are a lot of things we don't know yet, like whether this recurrence is isolated or if it has metastasized to other parts of my body. I will have a bone scan and a ct scan done tomorrow to try to find out. Sometime next week, I will have another surgery to remove the affected skin and to extract and analyze another small set of lymph nodes to make sure they're clean. In a few weeks, when I'm healed from these operations, I'll have an MRI to get more detailed pictures of areas of concern. In the meantime, I haven't the slightest what to do with myself. The air feels syrupy, hours slipping by too quickly and without incident, my emotions on rotation between incredible fear and disbelief, with periodic, unguided anger thrown in for good measure. The waiting is the very worst part.

I am so, so scared.