Deal with it

One Valentine’s Day I framed a quote that Amelia and I love: Maybe everything is already ok. It’s a good one, and true most of the time, but it’s work. It’s not putting your head in the sand or plugging your ears. It’s meeting things head on, acknowledging them, understanding them, and moving on.

Acknowledging the past is an important part of healing from any kind of trauma. I’m not one to put on a happy face on and skip through life with one breast exclaiming, “Everything is great!” No. Now that chemo is behind me I will dig deep into my feelings about losing a body part, an amputation.

When I look back at other traumatizing things that have happened in my life (and there have been a lot – I could write another dozen blogs), I am grateful. I wouldn’t be where I am in this world without these traumas because I chose to grow through them and in spite of them. I will grow through cancer and my mastectomy as well, but not without some work. Not dealing with the emotions of my mastectomy is like emotional suicide. If I ignore it, it doesn’t go away.

All these questions and feelings have started popping up about walking around with one breast:  Am I really going to march around in a tank top publicly when it gets warm? What do I wear when I swim? Who the hell cares? How do I support the left one? I need to design my own uni-boob bra! I’d say about 80% of me doesn’t give a hoot about how I look publicly; I’m just glad to be alive. But 20% of me is insecure and full of shame and way too concerned about what others see.

There are options, I’m just not interested in them. Like “foobs,” that is, fake boobs, the inserts you put into your bra. Or reconstruction, which I opted to not do. These are very personal choices and there are no right answers. Dealing with what I now have works best for me, learning to accept my body in its most natural state, even though there is less of it now. Maybe everything is already ok.

 

 

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The new normal

September 29, 2015

By Amelia Sauter

Everything has changed. Our daily lives are filled with different conversations, ones I didn’t imagine having until we turned 85 years old. They include bizarre lines that have never come out of my mouth before like Good job peeing! and The fluid in your drainage balls is looking pretty good today and Don’t worry, Leah, I don’t mind doing the dishes. I wake up in the morning and think immediately about cancer. The phone rings and instead of cursing it, I jump to grab it in case it’s someone from the surgeon’s office with new information. I can’t sleep well at night because I’m listening in case Leah needs something, and I’m worried about rolling into her, too. We tried sleeping on opposite sides of the bed so I wasn’t near the wound and the drains, but after 20 years together, it was like trying to sign your name with the opposite hand. Illegible, disorienting, and just plain silly.

Cancer makes everything else seem stupid, like filling out the planning paperwork for the Health Department for our restaurant’s new kitchen and getting the truck inspected before the end of the month. Our jokes have become morbid, like when we were both dragging ass in the grocery store and I said, “I’ve got a migraine. What’s your lame excuse?” And when I made us dirty martinis with the juice from our empanada olives, and announced one was Caregiver size and one Patient size and told her to guess which one was hers.

Leah doesn’t need much now, and I don’t know what to do with myself. She won’t be working for the next four weeks. What’s my new normal? Nothing is what it was a month ago. Cancer literally stopped us in our tracks. Now I don’t know where to start, and I’m not sure where I’m going. What do I want to do today? What should I be doing today? Those are two different questions, and I don’t have answers to either one.

Balance and strength

September 29, 2015

The hardest thing to do right now is putting on my left sock.  Putting on a sock, a simple little thing that I won’t take for granted after this. Other things that are quite difficult: getting in and out of the car, driving over bumpy patches of road, getting in and out of bed, opening a bottle of ibuprofen, picking something up that’s on the floor, putting my shoes on, tying my shoes, particularly my left shoe.

My left arm was in rough shape since the surgery removed five lymph nodes along with my left breast. I couldn’t raise my arm over my shoulder two days ago. If you don’t exercise your arm after an axillary lymph node dissection, you’re kind of screwed. Your remaining lymph nodes can stop draining properly, causing the arm to swell and a significant loss of range of motion. I need my lymph nodes to be doing their jobs right now more than ever, so I’m doing the exercises religiously. The simple task of walking my hand up and down the wall until I can feel my underarm pull a little gets easier by the day. The exercises are basically waking up the remaining lymph nodes, and don’t seem to affect the actual incision at all.

Full recovery after lymph node removal takes four to six weeks. I now shouldn’t get blood drawn or blood pressure taken from my left arm because I have less drainage creating an elevated risk of swelling. The lymph nodes send out fluid to help heal an injury and with fewer places to drain it, it can result in inflammation and swelling. Squeezing my fist above my heart over and over helps pump fluid out of the lymph nodes. You can feel all sorts of things happening during the exercises, including warm tingles mixed with slight discomfort.

Balance is my best friend right now. When you can’t use one side of your body, there is an amplifying domino effect that reverbs through the rest of your body and you need to figure out how to compensate for it. Yoga is your friend in times like these. Really it should be your friend all the time because sooner or later we will all break down physically so knowing how to balance now while you’re healthy is key. I’m not talking about the yoga people do and exclaim, “I can do man push-ups!” “Look at my beefy arms, woo!” It’s not a competition; it’s a practice in awareness of your body.

A few years ago Amelia pointed out the importance of the squat as we age. “Because dammit, we will not be the people who can’t get the hell off off the toilet when we’re old,” she says. A wise woman. I can’t use the left side of my body very well right now and suddenly I’m asking my thighs do a lot more than they used to do four days ago. Picking something up? I can’t just bend at the waist now. I have to do a deep squat to the ground and then back up. And I have to do it correctly, with my back as straight as possible. Day two I had some serious thigh burn, but my body has already adjusted and my thighs feel fine today. (You know what that means? “Squats! Yeah, look at my beefy quads, woo!”)

Getting in and out of bed? Now that is a production. I can’t really use my back because it’s pretty impossible to isolate my right side while telling my left side not to work, so it’s all stomach, all core. But we adapt. We get good at things relatively quickly. This is our new normal, Amelia and I keep saying.

Mastectomy scar

I have never felt the intensity of emotions that I had last night when we took my bandage off. I knew the emotions were there and that a flood of tears would pour out, but nothing could possibly prepare me for it because there is no point of reference. The incision feels and looks grotesque to me; it feels horrifying and unreal. But it’s fucking real and makes me want to hide. The sight of myself makes me so woozy that I have to grab the bathroom sink so I don’t collapse. I know my emotions will ebb and flow and change, but the visual right now is too much. Amelia, the person I love more than anything in the universe has to see this thing on me and then shame comes in. I don’t want to be seen like this; I want to be invisible. Just like women are built for pain, we know shame, too, especially body shame. I feel deformed. This is me now.

I have never felt so sad, never had this amount of grief in my entire life. Removing the dressing was the hardest thing I have ever done. I couldn’t actually do it completely; Amelia did. Afterward as we stood in the bathroom, she cradled my head as I sobbed. “My heart is breaking for you,” she said. That is the feeling. It is heartbreak. There are no comforting words anyone could say right now that could make this feel better. Right now I need to feel all of these emotions. They will be persistent and I will not ignore them.

The physical part of healing will not be complicated. I will heal quickly. I will walk, exercise my arm, take ibuprofen when I need to, rest, and keep moving. I’ll just move differently for a while. That’s the easy part. But the feelings of horror, shock, grief, shame, and despair are going to take a long time to go away. I will need to make room for them, understand them, and let them go. It’s going to be a hard road. No, everything is not ok, but everything is temporary.

Pain

September 26, 2015

I’ve always said that women are built for pain. Look at what our bodies can do. We’re tough, there’s no doubt about it. We’re designed to grow and pop a baby out of a tiny porthole. Not to mention period cramps. I’d like to thank whoever invented ibuprofen, the miracle pill.

The pain I have right now isn’t so bad. I took 3 rounds of narcotics the night after surgery and I’m done. I’m now on only ibuprofen. I have a prescription filled for a pain med, but I probably won’t take any of it. I’ll save it for if or when I over do it or I need to sleep, but I highly doubt I’ll need it more than that.

From what I can tell, recovery will be a lot about getting motion completely back since my muscles have been pulled and my skin has been stitched. Recovery will be slow and gentle. I feel intense sensations that I never had before on the left side.

Think about it: there used to be a piece of four-inch cozy insulation on the left side of my chest. Drinking something cold or warm feels completely different without that insulation; so does the air temperature. My left arm and torso are actually cooler than the right. Yet another a-ha moment! I had NO IDEA that my very own breasts actually keep me pretty warm. I have a built in down vest. Well, I used to. Now I have a half a vest.

Amelia and I went for a short walk this morning. It felt incredibly emotional and difficult, feeling the polar opposites of the two halves of my body in relation to the outdoors. I can understand why people want to shutter their windows and not leave the house.  But, it also felt great because I love the fall, I love Amelia, and I love being outside.

The best worst case scenario

September 25, 2015

This morning when I was finally out of my drug fog I was able to get a glimpse of my modified self under the bandage and two sentences kept quietly coming out of my mouth over and over; “Oh, my god,” and “This is real.”

Amelia is going through the same thing I am right now, feeling everything that I am, plus layers and layers of her own emotions. She is the Taskmaster, the Nurse, the Therapist, The Advocate. She is my voice of reason.

Cancer is putting both of our lives on hold. The amount of space cancer takes up is almost as large as Amelia and I put together. It’s big. But not bigger than the two of us.

When I saw Amelia after surgery, she didn’t have to say it. I knew cancer was in a lymph node. I knew it all along. So instead of the road ending with “just” a mastectomy we will go down another road. The road of finding out what feeds the cancer so we can find out how to destroy the cancer. That will dictate what type of treatment I will need, if any at all. My sense is that I will need treatment. So far, every worst case scenario has turned into our best case scenario, so I’ll take microinvasive cancer in one lymph node at this point. I will take Stage 1.

In my head I think, Isn’t giving up by left breast enough? Can’t the road end there? I’m going through the why and what the fuck phase. Right now I can’t even wrap my mind around my chest, where my left breast used to be just yesterday and what it looks like now. I do not look forward to taking the bandage off in two days and seeing what’s there.

Surgery update

September 24, 2016

By Amelia Sauter

Hi. It’s Amelia. I’m writing this from Leah’s hospital room where the nurses made me up a comfy bed so I can spend the night. Leah is sleeping quietly. We arrived around 10:30am today and after starting an IV they scooted Leah to the nuclear imaging department to put radioactive dye in her to highlight the sentinel lymph nodes, that is, the guardian lymph nodes that stand between the breast and the lymph pathways into the armpit.

The surgery itself was a relatively short part of a long day, only about 2 1/2 hours. My mom came to be with me while I waited, and we spent most of our time in the “healing garden” outside where I watched the bumble bees landing in the flowers as we talked.

It wasn’t until the surgeon called me after surgery that it occurred to me that we might get something other than good news, even though I knew that was a significant possibility. He immediately started talking about the lymph nodes – the same place the diagnostic doctor started three weeks ago. We took five lymph nodes out, he said. Four were fine. The other has a tiny amount of cancer cells.

I think he offered some reassurances about how a tiny amount is different from a larger amount, but these weren’t the words I wanted to hear. I wanted to hear “Everything went great and the lymph nodes are clear!” The surgery itself went great: a successful tidy mastectomy and a level 1 lymph node dissection with no complications and no damage to the muscle tissue. But all I could think was, I am going to have to tell Leah that she has cancer in her lymph nodes.

Yes, I’m the one who told her an hour and a half later after they wheeled her bed into her room. I’m sure she already knew when she saw my face. The cancer face. We’ve gotten to know that face so well these past few weeks.

Leah says she felt the whole time that the cancer was invasive, and that this is the good news she’s been waiting for, that it’s only in one node and it’s only a tiny amount. She keeps saying it. This is my good news.

Poked and prodded

September 24, 2015 – Surgery day

I have an incredible sense of calm today as I wait in my hospital room. Now is almost a waking meditation. A very light feeling, but with a healthy dose of disconnect. There are some things you need to keep at an arms length.

This is a good time to explain why I’m being so public about something so personal. One of my first feelings about cancer was that I didn’t want to keep it in the closet. I want to pull it out of the dark corner and shine a spotlight on it. I spent a long time in the Gay Closet and I can tell you this: you don’t come out just once. You come out to your family, your friends, your jobs, your doctors, strangers. It’s the same with cancer for me, so I may as well do it once, as publicly as I can. We all experience hard stuff. I believe in sharing it so we can learn from each other.

Cancer is very personal and individual. There’s no right or wrong way to handle it. This is my way.

Amelia will be posting updates after surgery.

Thanks for all the love.

Going flat

September 18, 2015

I’ve decided to go the no reconstruction route, also known as “going flat.” Before I get into why, let me start with this: it’s really no one’s business.  It’s my business, and I’m choosing to share it with you.

People have lots of thoughts about me getting a mastectomy.

“Why don’t you get the other one taken off, too?”
“It’s no big deal, it’s not like it’s a functional body part.”
-awkward silence-
“What?! Why wouldn’t you get reconstruction?”
“But you won’t be symmetrical.”
“I think it’s kinda cool to have no boobs.”

People have opinions about what I should or should not do with my breast, and that is weird. This is my body part. I have had it all of my life and I like it. This is very personal. Also, this isn’t a goddamn choice. I didn’t choose to get a mastectomy; the doctors cannot save my breast.

So, here we go:

Why don’t you get the other one taken off too? Ok, deep breath here…What the f*ck kind of question is that? I’m two weeks in and that’s what gets asked? There’s nothing wrong with the right one. My one right boob is nicer than most full sets out there. That is a fact.

It’s no big deal, it’s not like it’s a functional body part. -sigh- Yup, it’s easy. A walk in the park. Just losing a body part, that’s all. And try telling that to Amelia. As I said before, I like my boobs.

-awkward silence-  
Thanks for you support.

What?! Why wouldn’t you get reconstruction?  Well, for one I’m a D cup, and D cups can’t get reconstructed. A’s and B’s get reconstructed, so that would mean my right breast would need to get reduced from a D to a B if they were to match. Also, there is no sensation in a reconstructed breast, and my nipple would not be part of my reconstructed breast due to the location of the cancer. It often takes quite a few surgeries to get it right. Many reconstructions are complicated and cut muscle and borrow fat and tissue from other body parts. Recovery is much quicker with no reconstruction. And I’m not interested in a substitute. 

But you won’t be symmetrical  That’s right, I won’t. So what. 

I think it’s kinda cool to have no boobs. Nothing says cool like cancer.