loss

The scene: I am sitting on the lid of the toilet in my underwear, nervously running my sweaty palms over and over my knees, crying, while Jason stands, trying to comfort me, as we prepare to remove the bandages over the new scar where my reconstructed breast used to be. My new surgical drain hangs from a lanyard around my neck. I am sad, the sort of sad that comes from your bowels, that makes your legs feel leaden. I am still in shock. How did we get here?

Monday afternoon I went to the plastic surgeon's office to meet with a PA for a simple check up. A week prior I had gone in with fears that I had a mild infection. Since the signs of infection were no more and the transplanted skin looked the same (according to Jason, I never quite got to the point of being able to look at it myself), I assumed this was a quick appointment that did not necessitate Jason cancelling his dentist appointment and making the trek halfway across the state with me. I am an adult, and this appointment is of the easiest variety. I went alone.
At about 3:30 when the PA came in, he looked at the breast, prodded a bit with a sterile q-tip, and matter-of-factly said, "I can't tell if it's just the top two layers of skin that are dead, or if it's all of the tissue. I'll give you a prescription and you come back Friday when your surgeon will be in the clinic. Today he's in surgery." And my blood began to buzz in my head, my breath came fast and shallow, and I responded with quivering voice and eyes welling up, "You can't say that and then send me home. There are other doctors here. I want one of them to look at it. I will wait, but I'm not just going home." Amidst all my powerlessness in the doctor's office, as I lay back on an exam table, my possibly dying reconstructed breast unveiled from my papery hospital gown, I had made a demand and the PA took me very seriously, nodding as he left saying he would see who he could find.
He returned shortly with another plastic surgeon, oddly the first one we'd spoken to back in July when we arrived at U of M. At that meeting I disliked him. Among his first questions were, "What size would you like to be?" and when I said I'd like my breasts to stay the same size, he reacted a little dismissively. Monday, however, Monday I was floored by his kindness. He did the same prodding with a q-tip that the PA had done, but he reacted with urgency - leaving the room to call my surgeon, Dr. Momoh, actually pulling him from the operating room to ask about me. He returned, looking somber, as I suppose one does when a case looks serious enough to pull a surgeon from the operating room.
"We need to get you over to the main hospital for exploratory surgery to find out what's going on inside because what we can see on the outside doesn't look good."
I lost it, melted down right there on that fucking exam table in that fucking gown.
"Who is here with you?" His voice was gentle, one hand firmly on my shoulder, the other offering tissues.
"No one."
"Wow. You're tough."
I didn't feel tough. I explained that it was meant to be a check up, that my husband was at the dentist having a tooth pulled. He helped me off the exam table, into a chair, and crouched in front of me, how you might seek to make eye contact with a child. "I don't think you should drive right now. I think your car will be fine here, I'll talk to security about it. Call whoever you need to. I have to see two patients quickly and when I'm done with that, I will take you to the hospital myself. I'm headed there anyway."
So I set about making phone calls to Jason, to his mother because I couldn't remember the name of the dentist and because she was on call to drive him home if he was too groggy.
Meanwhile two nurses came in to wait with me. They talked about inane things that served to mitigate how hard I was crying. "Just remember," said the nurse with dark brown, feathered hair, "everything happens for a reason." Fuck that. Worst possible time to say some trite, semi-religious, nonsensical bullshit. What, exactly, is the reason for this? Because it wasn't hard enough when I had to go back in for more surgery two days after the main ordeal? Because it wasn't enough that the main surgery lasted four hours longer than it should have? Because I still haven't learned enough about loss? Am I too vain? What?! I wanted to scream, is the fucking reason? None, of course. These things just happen sometimes. I hadn't the energy to respond to them.
I talked to Jason. Talked to Sally. They were on their way. The kind doctor came to get me, and we drove. A pretty drive, past colorful houses and their lovely gardens, down tree-lined streets, the sky vibrantly blue, sun shining brightly.
"So your husband's on his way? I hope he isn't driving having taken narcotics. How long is the ride? He'll probably be here in less time than that, huh? I think a lot of men speed."
"I actually have quite a lead foot myself."
He nodded approvingly, "Good for you."
I thanked him for driving me to the hospital, and he said wisely, "I have learned that there are a few times in life when you just shouldn't drive. After the phone call when you learn you have cancer is one of those times."  He trailed off a bit, "I don't remember that drive at all." And we talked quietly about our respective experiences finding out that we had cancer. He talked about being angry, how it's so consuming, how it's temporary in the low stages.
He walked me to surgery admitting, wished me well and left to attend to his own patients. It was 5:00. I frantically sent text messages giving Jason directions to the waiting room, letting my mom know what was going on, filling out consent forms and forms identifying Jason as my power of attorney. at 5:30 they called me back to pre-op. A nurse who looked like a high school student waited impatiently as I scrawled a note for Jason, reminding him (unnecessarily) to see that his brother could go to the house to watch the dogs, telling him, "I love you. and I'm scared." Which, as soon as it was on this post-it seemed like a mistake. What if he gets here after I've already gone into surgery and he just has this note that says I'm scared? That would feel awful. I added a tiny "eep!" to keep things light.
I talked with my surgeon who looked disappointed, who rubbed his forehead and gently handed me a gauze pad instead of a tissue when I started to cry as we talked about being realistic, about how the transplant tissue looked bad, about his PA who was going to send me home until Friday. "He what!? That's unacceptable, just totally..." and the surgeon catches himself - keep your medical criticisms to a minimum while at the patient's bedside. Nurses and anesthesiologists came by, looked at me, introduced themselves and wandered off. "I will save it if we can, but I don't want your hopes up. I don't want you to wake up surprised or disappointed. If it's dying, it will make you very sick and it will have to go."
Jason arrived shortly before I was taken back to surgery, I'm sure to the infinite relief of the nurses who were undoubtedly sick of hearing that I really wanted to see him. Could we wait just a little bit to start the iv? He'll be here soon. He left at 4:00, yes, from Kalamazoo. Right, just a few more minutes. Thank you. Thank you. 
He was upset at not having been there, but how could we have ever predicted, ever even harbored such fear? Everything looked the same. This happened too fast.
Nurses tried and failed eleven times to get an iv into my veins. My hands and feet are pocked with their efforts. "You're so nervous" they said, "Your veins are clamping down, crying, no water..." They wheeled my bed toward the operating room as I turned back to Jason, "Get my phone from my purse. Call one of my aunts - tell her to call everyone else. Tell my mom what Dr. Momoh says."

I woke up sore, groggy, confused, asking for Jason, water, and pain medicine. "Soon," a sweet, elderly nurse assured me. I woke up with pain from my new surgical drain, with a raw sensation under my skin from where the transplanted tissue, that dying mass of fat and skin, had been scraped from my skin and chest wall, with only one breast.

It will be weeks before we can talk about a prosthesis, months before we discuss my remaining reconstruction option. In the meantime, I will set about healing, managing the loss, my anger and sense of waste at all that time, all that care-raking, all that healing and frustration, and figuring out how to disguise my lopsidedness so that I can go back to getting around in the world without wearing cancer so prominently.

trying

Finally, a bit of excitement wends its way into this ordeal not a moment too soon. While managing, treating, and recovering from my cancer care so far, there has been little about which I have felt excited. I felt relieved that there was no cancer in the lymph nodes. I have felt pretty good, if sometimes frustrated, with the progression of my surgical recovery. But somewhere in my perhaps too-negative mind, these things fall short of being slotted into the category of events that I would normally call "exciting." They tend, instead, to sit in a new compartment that would be appropriately labeled, "thank fucking god because this could be so much worse," and while I have been swept over with relief and gratitude, it's been a far cry from excitement. But now, in advance of beginning chemotherapy, this is when the exciting stuff happens.
Unless in the midst of a pregnancy scare, a woman's period isn't something she is usually eagerly awaiting. I for one hate mine; it's a hassle and it's uncomfortable, rife with backaches and literal contractions (yep, just like childbirth contractions), and if it didn't ever happen I would think that was pretty cool. Though this month, I am attuned to every pull, bloat, cramp, ache, and new zit. This month, when the cycle begins, I will high-tail it to Ann Arbor to begin the in vitro fertilization process.
The procedure itself is a little unnerving. For ten days I will give myself shots (instruction video here if you're curious about the process) and make a few trips to the fertility clinic to have ultrasounds to monitor follicle development. When the follicles are mature, we will go again to the clinic where they will harvest the prepped eggs by pushing an enormous needle through the wall of my vagina and sucking the eggs up with said giant needle. Jason will have some time alone with a specimen cup and sperm and egg will meet in a petri dish. Romantic, huh? Don't mistake me - I'm no personhood or life-at-conception nut. I think those ideas are damaging and scary. But there's something thrilling about the conception process, even when it's going to happen in a little plastic dish under a microscope instead of inside my body. I mean, we're trying to make a baby! It's a pretty fantastic thing. From this hellish time in our lives will come a few embryos, relics of our current physical states to be stored and frozen until cancer is behind us. A child grown from this fertilization process will be the child of our younger selves. When other couples announce bashfully, excitedly, "we're trying," and head home for frantic quickies on lunch breaks, take temperatures, have lots of unprotected sex, and pee on the fibrous end of pregnancy test sticks, we will pull those internal functions out, place them in the care of doctors, cross our fingers that a few will take, and wait until my five years of Tamoxifen (hormone-suppressant pill therapy) are over. The delay is the strange part - we are now "trying" - these next few weeks our modified efforts at conception (less fun than the old fashioned method), but the pregnancy is off in the future somewhere.
I'd always envisioned deciding to try to get pregnant as an exciting choice, a time of eager waiting and redoubled sexual activity, buzzing anticipation as tests cure on the back of the toilet. It turns out that even with that happy procedural rug yanked from beneath my feet and supplanted by a sense of urgency to complete the harvesting, fertilizing and freezing before I start chemotherapy, I am still pretty stoked to be in the midst of baby-making, however it comes to us.
And five years from now, when a few of these embryos are thawed and implanted, we will huddle around pregnancy tests, hoping that Conception Effort Part II is also a success, that on the other end of this shit storm lies a healthy me, and a thawed cellular me+Jason concoction that will take up in my uterus for a while. 
Hey everyone, guess what? We're trying to make a baby!
Thank you forever and ever for your overwhelming support. We're pretty damn excited.

slowly going

Healing is a slow process, and I am impatient. Each day I test the shrinking limits of my arm's reach, prod at the new breast, and feel frustrated that the reaching is painful, that the breast is so hard. I do find joy in my progress and acknowledge that much progress has been made; no doubt many of you have heard about my excitement to now be able to wear pants with zippers and pull-over shirts. More accurately, I can wear one particular pair of pants with a zipper and a rather stretchy fabric waistband - my one attempt to put on jeans was an uncomfortable failure. I could always jump on the 'leggings are real pants' bandwagon for a couple weeks and evade public judgement because so many real pants-haters before me have paved the way for me to leave my house in tights and a t-shirt. But seriously, leggings just aren't real pants.
I can drive again, the liberating result of both taking no pain medication during the day and having had my last surgical drain removed. I can sleep in my bed with my husband and shower and use the stairs when he's not home without fear of becoming light-headed or falling. For the most part I walk like a person without any ailments, and if I wear a bra, no one would know anything had happened to look at me, that thin, thin cup and a sweater sufficiently disguising my malformed, bandaged breast.
I am adjusting to the scar on my butt and how I had anticipated that my underwear would hide it, but they do not (time to invest in some high-waisted granny panties!). The skin feels thick, taught and hard. Sensation is missing which makes the pain that emerges at odd times throughout the day difficult to pinpoint. It's there somewhere, but I can never be sure what I'm touching, pointing out. I spread the contents of a capsule of vitamin e over the scar and my fingers no longer recoil, startled, at the feeling of it - so unlike the rest of me. It feels very thick and looks very thin. 
My effort to regain a full range of motion in my arm is both the most painful, and my favorite part. I can control it. I can practice and work on it, will it to reach, where I can do nothing but wait for my breast to heal. I cannot will the skin to grow any faster, to become less bruised, cannot stretch away the ugliness of it. I can get my arm up over my head but when I do, the resistance starts near my diaphragm and reaches up past my shoulder. I breath deeply and walk my fingers up the wall again. Turn and try to reach up up up with it straight out to my side, feeling a heady mix of pride and defeat when I can get it just above a 90degree angle from my side. "Jason! Look!" while internally it is nothing but, stretch, stretch, stretch, ow ow ow. Too far and I'll only make it worse, by body's reaction a reminder to stop. That it could ever reach as far as the left, which extends with ease until my ear touches my bicep, is a distant reality (I hope).
I want an instruction manual for the first time in my life: "how to manufacture patience for the remarkably impatient patient." Because as wonderful as it is to get out of the house, to see people, to know that I look mostly like my old self, (and it really is wonderful) there's a persistent little flicker in my own mind that I'm not there yet.

choosing it

We can do more testing. It seems we always have the option of More Tests. It also seems to be the case that regardless of how much testing we do, there is a hefty amount of my own decision-making necessitated by whatever information sits before us. The picture is always incomplete.
Monday we met with an oncologist from U of M. Somehow I anticipated that she would come in, sit, down and tell me straight - either I need chemo or I don't, right? Not so much. "We tend to lean toward it, but we also acknowledge that there are lifestyle and personal considerations. We also acknowledge that many patients do not need it," says the kind-faced doctor. She talks to us like we are children, like we are the last people on earth who could be expected to understand anything about our circumstances.
There is a test I can have done called the oncotype test that analyzes the genetic make-up of my cancer cells and gives me a score that categorizes my risk for recurrence - a low enough score means the doctors would feel comfortable with me not having chemotherapy. Scores are categorized into three risk pools - low, medium, high. Because of my age, the doctor suggested that even a low score that was close to the middle range would elicit chemo recommendations from U of M's tumor board (that's the name of the team of doctors who review the cases together). The test, however, like everything else about cancer, is an imperfect tool for assessing the risk of women my age. The test was designed with older breasts in mind and owing to the infrequency of 28year-old breast cancer patients, there is little data about its efficacy for young women. The oncologist seemed to contradict herself as she then said it could be a useful tool, but that assessing the data would include some guesswork. "We just don't know," she said as though she were addressing a kindergarten classroom. Essentially, I'd have to fall into a very small category of low risk in order to avoid a chemo recommendation and that seems mathematically improbable.
Still, it's up to me to choose, and here is where the numbers get me. If I were to do nothing from here on out, there is a 75% chance that I would be perfectly fine, cancer-free and healthy in ten years. Decent odds. And if we were talking about $20, I'd probably take them, but instead we're talking about my life so the remaining 1 out 4 sounds like a big number. That's a lot of people, 1 in 4. Using the hormone-suppressant drug therapy reduces this risk to about 18% which is better, but to put it in terms of people, that's still almost 1 out of 5, and isn't much more comforting. Adding chemo to the mix reduces these numbers to 10%. Better. I don't love these numbers. Nothing about them makes me swoon with any sort of comfort or notion of lasting salvation from over-zealous, productive malignancies, but one set of numbers is obviously preferable to the others, right? The crazy thing is that no matter what, 75% of patients are being over-treated. I am much more likely to be one of those patients than one of the other, less fortunate ones. That said, I am scared shitless. I'm terrified to go through this again, to know that if I did go through it again, chances are it would be with metastatic disease that had grown in my bones, liver, lungs, or brain. To know that at that point it would be too late to think about living cancer-free, that instead I would live on a regimen of disease management. But it probably won't come back. Finally, a set of odds is stacked in my favor.
Still, a feeling lingers, thoughts that chill me, nagging what ifs, impossible to answer. What if I didn't do the chemo, though the doctors seem to advocate for it? What if I went on with life now instead of three or six months from now? Could I actually do that? Could anything but the most rigorous treatment plan allay my fears of having cancer again? And if it did come back, or more accurately, reemerge in some distant part of my body ten years from now when we hopefully have a child, and I hadn't done everything in my power to stop it, could I live with myself?
I choose chemo. I choose its temporary side-effects over years of greater uncertainty. I choose the set of treatment options that I think offer me both the greatest peace of mind and the greatest opportunity to live the life I wanted before this nightmare began. And I'm doing it because I know with every bit of me that if I didn't, I would never move on, that fear would leave me crippled, and at this point I think cancer has taken enough from me.
Hashing out this decision, something clicked. A scene suddenly set for a classic old Western showdown between me and cancer. Cue the tumbleweeds.
I'm moving forward with everything I've got. And I haven't felt so frightened, so sure, or so alive in months.

drainage

This post is about surgical drains and maybe isn't for the weak of stomach. Because surgical drains are pretty gross. There is also a picture of my actual drain, so the whole post is after the jump in order to keep the picture from popping up on your screen as soon you arrive here.

what i know

disclaimer: I'm sad. When I made this I assured myself that I would share it only insofar as I trusted that I would still be honest in writing it, so that's what I'm trying to do. I'm not attention-seeking and I certainly don't want to worry anyone, but at the risk of doing both, here goes the honesty. 

At present, I don't feel like I know much about my new body. We met with the plastic surgeon yesterday and he immediately mentioned lifting my untouched left breast to match my mangled right and it sent me into a sobbing tizzy. I don't want more surgery. I didn't want him to make my right breast any perkier or different than the left. That cancer-free left breast feels like a precious thing right about now; I've no interest in meddling. It was the model we were shooting for. Just thinking about it threatens to unhinge me again.
I know I don't like it, what with it's deformities, pains and incompetencies. I know that my right breast is hard and it seems to be in the wrong place, like someone shoved a day-old bagel in there too close to my collar bone instead of soft, malleable fat. I know that it is discolored with bruises. I know by touching the bandage that where I had a nipple, the very thing that made the breast a breast to begin with, I have a circular incision that feels rough and thick. I hope that most of this roughness is glue and not scabbing. I suspect this is wishful thinking as this incision site was used twice - once for the initial surgery and again for the emergency surgery. I know by accident that at the center of this incision is a flap of skin that used to belong somewhere else and that it is grayish pink in color (peripheral vision's a bitch sometimes).
I know that we have indeed arrived at our unimaginable destination. It's real. I get it now. Which is exactly why I can't joke about it anymore. Because now it's my life. In the same way I recoiled when a family member talked in too much detail, too flippantly, about my reconstruction, I am now recoiling from my own callousness. I have never felt so brittle; everything seems to hit a raw nerve. Indeed, they're all raw.
Yesterday after we went to see the doctors, Jason asked if I wanted to get lunch anywhere. I requested a stop at the food co-op so I could get some yogurt, move around a bit, be somewhere familiar doing normal things I did weekly before the surgery. As I struggled out of the car, he stopped me, "Let me see," like a kid leaving for a date or an interview, to make sure my drainage tubes were not hanging out anywhere. "Look at me," I said back to him, "looking just like a regular person doing regular person things." And maybe, just maybe - in spite of the limp, the slow walking pace - I fooled someone into thinking just that.

just in case you're wondering

I'm here, home safe and sound, tired with pain decently managed and figuring out the limits and capabilities of this post-surgical body of mine every day. It's hard to sort out all of my thoughts and feelings about the hospital, surgery, my new body, my frustrating post-op inabilities, this amazing support network, the new intimacy of Jason changing bandages and checking blood flow in my new breast because I still can't bear to look at it, and a host of other things that come along with post-op cancer. Or, more accurately, lack thereof. Because there isn't a single bit of cancer left in me that they can find. So now we wait to find out if I will need chemotherapy, wait to have these awful drainage bulbs removed, wait to regain full movement of my arm, to start fertility preservation procedures, to feel like myself again. to have our life back. We're getting there.