Preach it, Sister

If it looks, smells and sounds like religion in any form I can guarantee you I will not be interested in it. A “practice,” on the other hand, is something I can embrace. The word practice says something powerful to me. It says I’m still learning, growing, and evolving in mind and body. I take full credit and full responsibility for my massive screw-ups as well as my tiny triumphs. I am thankful and grateful to everything and everyone. But an unbending belief in something – in anything – is a thing I reject.

People can get incredibly devout and preachy on subjects they feel passionate about. To me this often feels patronizing and at times derogatory. Rigidity and the thought that there’s only one way to do something has never worked for me. Let me tell you how right I am: I’m vegan. I love God. I eat paleo. I do crossfit! I do yoga. Sugar is evil. Do you see my beard? White food is evil. I bike 50 miles every day at 5:00AM. I love God. I am God. 

I know one thing pretty well: myself. And I can get preachy, too. I’m going to preach about getting your damn mammograms every year from age 40 on. I’m going to preach about being your own patient advocate and learning about your diagnosis. I’m going to preach about taking as much responsibility in your treatment as your doctor does. I’m going to preach about politics staying the hell out of of my body. I’m going to preach about our fucked up health care system in the United States. I’m going to preach about women’s body image. Recovery is my new practice.

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The caregiver’s day

By Amelia

When someone is diagnosed with cancer, it’s incredibly time-consuming. I got a new job in September, one that I applied for when I married Leah and said “In sickness and in health.” After nineteen years of health, we’re bracing ourselves for the other part of the deal.

At the end of every day, I find myself feeling like I’ve accomplished nothing, and yet I’ve been busy all day. So I decided to track my activities to give you (and me) an understanding of what a caregiver’s day might look like.

6:30am. Eesah begins pacing. I shut the bedroom door and try to go back to sleep. He paces by the door with his curled arthritic toenails clicking on the linoleum, and then stands by his food dish and stares toward the bedroom door for two minutes. I can feel his watery old eyes. He stands there just long enough for me to fall back asleep. Then he paces by the door again. Tick, tick, tick, tick, tick, waking me up as my brain tells reminds me that his elderly bladder is full and he is at risk of having an accident. He falls down on his bed and sighs. I fall back asleep for two minutes. He paces by the door again and stands at his food dish, staring. This goes on until I get out of bed, or until he pees on the floor.

7am. I get out of bed. I feed the dogs and go outside with them to pick up poops and yell at Henny when she barks at squirrels, deer, leaves, wind, and Olive the Evil Possessed Chihuahua who lives next door.

7:20am. I wash my face, make coffee, put away last night’s dishes, and tidy up the other things strewn about the house as I wonder how the heck we always end up with so much stuff strewn about the house.

7:40am. I sit down with my coffee, check Facebook for any Life Altering Posts, and email my mom.

8am. Leah gets up. Eesah starts pacing again so I throw him outside.

8:15am. I call the contractor. I forgot to pay him for when he replumbed the tenant’s toilet. I recorded the payment in Quickbooks but never actually wrote the check. This is the caregiver’s brain. I tell him the check will go out in the mail today. As soon as I hang up the phone, I forget to write the check.

8:20am. Leah has already written a blog post. I edit it, and hug her and kiss her all over her face and tell her how amazing she is.

8:30am. I start the phone calls. Appointment for the Honda’s brakes. Changing my allergy appointment which conflicts with a post-op appointment. I switch to emails about cupcake wholesale orders.

9am. I put in the second load of laundry this morning. I can’t even remember putting the first in when I got up, but there it is.

9:05am. I make breakfast. I clean up from breakfast. I put dishes away. Again. I let Eesah out. Again. I don’t remember letting him in.

9:45am. I am still in my pajamas. Two and a half hours has past. I wonder what the heck I’ve accomplished, because it feels like nothing. I get dressed. I post cupcake pictures on the business Facebook page, watch a video on crow funerals, and read the daily Ithaca Voice and NPR news headlines. I call the trash company and tell them they forgot our bins again. I call the soda company and ask them where our refund check is. I mapquest the Rochester doctor’s office. I email the Cancer Resource Center to ask about local oncologists. I put the third load of laundry in the dryer. I let Eesah out again.

10:30am. We go for a walk, doctor’s orders. In the surgeon’s words, “You aren’t sick. Nothing is wrong with your legs. Get out there and walk.”

11:30am-6pm. Doctor’s visit in Rochester, combined with a trip to Trader Joe’s and/or Target and/or visiting my parents. Alternately, go to Felicia’s to bake and deliver cupcakes to the wholesale accounts. Alternately, go to other job (as soon as I find one).

6:30pm. I make dinner.

7:45pm. I write checks and do some bookkeeping, or go to store, or reply to more emails, or give Eesah a bath, or research cupcake recipes, or fill out our liquor license application, or gather materials for the health department permit, or hang the tenant’s curtains rods, or paint a wall, or take out the compost, or fill the bird feeder, or design a historical landmark gingerbread house, or mow the lawn in the dark, or bake granola.

9pm. We watch the Great British Bake Off. I feel guilty for sitting down. I make tomorrow’s to-do list. I remind myself that I have it easy: Leah can walk and talk and bathe herself and get in and out of the car and think and plan and create and laugh and heal and get through this and come out even stronger on the other side.

10:30pm. We go to bed and I snuggle up to Leah’s good side. I feel grateful.

Chemo schedule

There are times when you are acutely aware that you are the youngest person in a room. A chemotherapy treatment center is one of them. These are the times when I think, “I’m not supposed to be here.” But here I am, in a room with people decades older than me who also have cancer, and they’re looking at me thinking the same thing, She’s not supposed to be here. It’s what I think, too, when I see someone decades younger than me with cancer. It’s a stupid vicious circle of cancer.

This is the appointment I was dreading: the oncologist. I just keep waiting for someone to say, “You’re all set. Bye!” I don’t want to hear anymore bad news. In fact, I don’t want to hear any news at all. But the oncologist laid out the plan: chemotherapy for 18 weeks (Taxotere & Carboplatin), and Herceptin for a year.

Chemo will be administered through a mediport that will be inserted in my chest in surgery. The port is a small disc, about the size of a quarter, and will sit just under my skin. A soft thin catheter tube connects the port to a large vein. Chemotherapy is administered directly into the port. Blood can be drawn through the port as well, which gets done before every appointment. It’ll be in for a year. Things like this fascinate me so I start googling all sorts of things; Who invented it? When did they start using it for chemo? What is it made of? Do they put it anywhere else in the body? Can your body reject it? What are the risks? What does it look like? Any reason to learn something new.

Each doctor I’ve seen always checks in with the same grave question, “Do you know why you’re here?” It’s like when you’re speeding and you get pulled over by a cop, “Do you know why I pulled you over?” Of course you want to act innocent and mystified as if you couldn’t have possibly been speeding, but what comes out is “Yeah, I was speeding.” The doctors want to know that we’re ready, ready for words like cancer, mastectomy, chemotherapy, hair loss. I think I a lot of patients probably go into appointments with false hopes, not grasping the gravity of their diagnosis. A lot of patients simply haven’t asked questions about the details and their doctors have to carefully navigate through some big emotions. I am a reader and a researcher, so when she asked me, “Do you know why you’re here?” I said “Yes, I have cancer, I’m going to get chemo, and all my hair is going to fall out.” She liked my answer; it’s one less thing for her to explain and more time to talk about treatment details. With the basics out of the way, we walked with her into the deep, dark depths of the cancer basement.

Food makes it better

No matter the life situation – good or bad – there is one thing that makes us all feel better: Food. The amount of delicious food that has been dropped off to us has been pretty awesome. We go to weddings, we eat. We go to birthdays, we eat. We go to funerals, we eat. We have babies, we eat. We don’t feel well, we eat. Eating good food makes problems seem smaller.

Thank you to everyone who made or dropped off food, or offered to make food (we only decline because we don’t need that much). But also thank you for the cards. Thank you for the e-mails. Thank you for the texts. Thank you for stopping by. Thank you for offering to help. Thank you for thinking good thoughts. Thank you for the side hugs (beware the left side). Thank you for the distractions. Thank you for the outpouring of love. We may not need a lot of help right now, but we greatly appreciate all of the offers.

If there’s one thing I’ve come away with, it’s this: a really, really good meatball greatly aids in the healing of anything, and could possibly end wars. Do not underestimate the power of a meatball. Embrace the meatballs! Plant more meatball trees! (Sorry vegetarians.)

Removing a mastectomy drain

Mastectomy drain

Mastectomy incision & drain

Yesterday my second drain was removed. This drain went up into my chest under my skin about 8 inches toward my incision and the center of my chest. I am now drain-free! Damn, it felt great to take a shower after 18 days of sponge baths. It was another first, a shower without a breast: weird, sad, scary.

The amount of my left side that’s 100% numb is very troubling for me. My surgeon told me feeling may never come back. I find that thought difficult to deal with. My tactile self cannot grasp not being able to feel a part of my body. My left arm and side now come with warnings: Do not leave out in sun. Do not take blood pressure or blood from this arm. Do not compress. Do not injure. Do not burn. In other words: be careful. And in case you didn’t know, careful is not my middle name.

I don’t look at what has happened so far and think: My breast was taken away from me. My body betrayed me. I’m battling cancer. I’m constantly reminded that it does not matter what I want right now; what matters is  creating a treatment plan for cancer. My list of wants is getting smaller and smaller as one by one my options fade and disappear. I didn’t want to have to have chemo and I don’t want my arm and side to be numb. I now have to work with an increasingly small and limited set of perimeters.

Wednesday we meet with the oncologist and keep moving forward.

I am not angry

I’m very aware that anger doesn’t belong anywhere in the cancer equation for me. It didn’t belong anywhere before cancer either. Anger to me is usually a byproduct of some other emotion. I’d rather figure out what my true underlying emotions are than to let anger bubble up through the surface and take me down some dark path at 100 million miles an hour. Anger is lightning quick; emotions are grandma slow. I like to follow speedy cars when I drive, but emotionally, I like it just fine hanging out with grandma.

I could see how people that don’t know me well could assume that I am an angry person in general. I have a way of marching through life that’s a little aggressive at times. I see this as a necessity as a woman. It may be 2015 but we still have to work at least twice as hard to be taken seriously and get paid 30% less. WTF? I will not be meek and lady-like. I will not be small. I will meet you head on, whoever and whatever you are. I will be myself. I’ve always liked the quote, “Well-behaved women rarely make history,” because it’s spot on. Women that are deemed “aggressive” usually get that other fun word attached to them: Bitch. But somehow I get away with it. In fact, the way assert myself is expected and accepted by the people around me. I’m not sure how or when this happened but somehow I got taken seriously. Strange that when a man walks through life aggressively it’s considered a positive thing.

I reserve anger for very few things, like the idiots I have to share the road with or turning it towards myself. My own worst enemy is and always will be me. Irritation and annoyance? Now those are my things. But even this is beginning to change. I don’t think I can justify feelings of annoyance and irritation now, certainly not anger. It’s an energy suck, and I need all my energy right now.

Reaction and inaction

I don’t even know where to begin with this one. Two weeks ago I had written a draft on this subject and my feelings have shifted since then. I expect they will shift again through this process.

This post is about some people’s inability to acknowledge that something really bad is happening. If you ignore cancer, it doesn’t go away. It’s not a monster under your bed; It’s a monster inside my body.

My advice to those people who can’t integrate the very bad parts of life: you’d better start figuring out how to because cancer or something else very, very bad is coming to a life near you sooner than you think. Bad is a normal part of life. Awkward silence? I almost understand. There is no ‘right thing’ to say. But you need to learn how to deal with it. You don’t have to have cancer to get a basic understanding of what is happening. Also, this isn’t about you, you are actually going to be fine. I’m the one with cancer. Today.

Oncologist

The next appointment we have is with an oncologist. Dammit, I now have an oncologist.

The pathology reports came in electronically. (We love technology. That we can view all of my records and test results online is amazing.) Trying to decipher a pathology report without a medical professional is pretty hard. There’s only one thing that we really came away with. During surgery, the pathologist in the operating room found a 2mm area of cancer cells in a lymph node. This was classified as a micro-invasion which is a very grey area as far as treatment goes. All of the tissue was sent to the pathology lab for more thorough testing. The new pathology report says two lymph nodes testing positive for cancer, the largest tumor being 6 mm, which is a macro-invasion. This means I have Stage 2a cancer. Well, shit, this is not a grey area anymore.

Hormone receptor tests came back, too. I am negative for estrogen and progesterone, but I am positive for HER2 (human epidermal growth factor receptor 2). This, to me, is good news because HER2+ has very successful treatment with Herceptin, a drug that targets the HER2 receptors.

I am doing a lot of what if-ing right now, trying to prepare for the next steps emotionally. My sense all along has been that I’ll need chemo but I keep hoping for some little light to point in a different direction. It’s a waiting game, still. And I’m full of questions, some of which I don’t want to even ask out loud.

There is more good news. Genetic tests came back all negative. I don’t have any of the scary cancer genes.

Last month I was stressing out about re-wiring lights and tiling a floor. This month I’m relieved that I don’t have scary cancer genes, and I’m beginning a long journey of healing after a mastectomy. Perspective.

Body image after a mastectomy

I don’t think I know any women who don’t have some sort of body image issue. It’s like riding a bicycle: Once we learn how to feel uncomfortable with our bodies we never forget. That discomfort quietly rides along with us waiting to interrupt otherwise good days. (Body image isn’t just a woman thing by any means. I know plenty of men who struggle as well.)

My mastectomy has literally thrown body image right out the window for me. I have an amazing partner through this whole ordeal. She is naturally inquisitive on a practical, scientific, and factual level. Don’t ever try to argue with a Sauter; they are usually right. Amelia always asks a lot of good hard questions and now is no different. The other day while we were out for a walk, I mentioned I was noticing that my perception of my body image was shifting. She immediately asked how I felt about each of my individual body parts. My responses are a lot different now than they would have been two months ago. Shit just got real.

There’s nothing like losing a body part to neutralize a very skewed view of your own body. Sentences like: I’m fat. I hate my thighs. Ew, look at that, I’m gross. I can’t leave the house looking like this. These sentences sound incredibly trivial and shallow now. I’m missing a body part and I think – I’m fat? No, I don’t think so. Not anymore. I can’t pinpoint where my body image issues came from or how they developed, I just know that now I see myself differently. It may sound bizarre, but the extreme of my mastectomy feels like it has freed me from the ridiculous standards that society holds for women. My body image shaming voice is so far out there I can’t even hear it anymore.

I have the opportunity to re-build my self image about my body. Cancer knocked on the door and I see opportunities behind it. I would have never considered myself an optimist until now.

This is how I feel. Today.

First times

There are a lot of “firsts” after something as life-changing as a mastectomy.

Two days after surgery, I left the house for the first time. It was a production: getting in the truck, figuring out how to buckle in, bracing for the bumps and potholes in the road. But it was a success and I also had my first beer, a Southern Tier Pumpking, my favorite fall beer (yes, I am one of those people who loves pumpkin beer, thank you very much). Amelia drove us to a friend’s lake house and we sat on the dock for two hours on a beautiful fall day. Cayuga Lake feels like the ocean sometimes; there are areas where you can’t see where land begins again. Feeling small could be regarded as a bad thing, but this kind of feeling small is fantastic. I am so minuscule in comparison to the lake that my perceptions of difficulty or problems become just as tiny. Even if it’s only for two hours, it’s a relief.

Day three I went for a walk around the neighborhood with Amelia. It was a production as well, and included tying my shoes and pinning my drainage bulbs out of sight (now referred to as “my balls”). I was markedly slower, but it felt great to walk. I do love fall. I had a great deal of trepidation because I didn’t want to see anyone. “How are you” isn’t working for me right now. I’m already brutally honest so my response very well might be, “Other than having a body part amputated, I’m ok. Thanks.”

Day three I also saw friends for the first time. This is more of an emotional production since every person affects me in a different way. Around some people I’m acutely aware of myself physically; around others I’m more aware of myself emotionally. There are those I have to protect myself from so they don’t drain me. There are those who require all of my awareness be about them. There are those I feel whole around.

Day three was a big day of firsts: We also removed the bandage and I saw my chest for the first time. I don’t think any other first can be as hard as that one. I wrote about it in detail already.

Day four I tried on one of my shirts. It was incredibly unnerving and disorienting to see how it fits me now.

Day six was my first day alone. It was very dreary and I couldn’t help but think about the people who have been or are alone right now as they try to heal. Damn, I don’t want to be someone who overuses words like ‘grateful’ and ‘thankful,’ but I do feel thankful.

Day seven was my first hike. Amelia and I walked into Taughannock Falls. This walk was different than going around the neighborhood where we basically see no one. I had to pass many people on the trail. People who hike are perky people. They nearly always want to make eye contact and say hello. Ugh. Hi, I’m Leah…See my dangly balls and my one big boob?

Day eight was my first trip to Ithaca. One word – Wegman’s. We shopped and managed to not see anyone we knew. Success! It’s not that I’m avoiding people, by the way. It’s that people now see me as an illness instead of a person. I Am Cancer.

Numbers, numbers, numbers

October 2, 2015

It’s not clear that ductal carcinoma in situ (DCIS) can develop into invasive ductal carcinoma (IDC). There are a lot of opinions out there.

Doctors think that only a tiny portion of DCIS will at some point involve IDC, maybe 10%-15% according to my surgeon. I am one of those women. There is a lot of research going on, so those percentages will change with every new breakthrough, which is good, because understanding DCIS could very well be a key to something big for breast cancer research. I hope so for all the other women who may be going down a version of my path at some point in their lives. But I’m not a doctor or medical researcher. I’m just one woman trying to understand her own cancer.

The numbers just keep piling up inside my brain. I can usually make sense of things by way of numbers. So I start to think and calculate based on 100 women. These are all ballpark numbers. Like I said, I’m not a doctor or researcher, but I want to try to wrap my brain around it, and this is what I came up with.

100 women
12% – will develop some form of breast cancer. That’s 12 women.
80% – of the 12 women diagnosed with breast cancer will have invasive cancer. That’s 10 women.
10% – of the women with invasive breast cancer will find some cancer in their lymph nodes. That’s 1 woman, named Leah.

One woman in 100. Looks like I am in an elite group. I have hit every goddamn bad statistic so far.

I keep wanting this to stop; at DCIS, at lumpectomy, at mastectomy, at invasive, at lymph node. And it hasn’t. The one thing I’m left with is Can I not have to get chemo, please? Can I just get a break here? We won’t have an answer for at least 2 more weeks. We’re still waiting for pathology reports, I need to have a post-op meeting with my surgeon, then we move on to the oncologist. Cancer is my co-pilot.

Macabre drainage

October 1, 2015

I am extremely visual and tactile. I was that kid who touched every thing when I shouldn’t. I still am that kid. I can look at something and quickly see how it operates and how I can re-create it. These qualities are great for fostering creativity, but when they apply to my body after surgery, it’s horrible.

It’s nightmarish and unnerving to see two plastic drainage tubes coming out of me. One is in my armpit, the other is in the incision in my chest. The tubes are inserted at the bottom of my rib cage and go up about 8 inches. They drain into bulbs that I empty and measure a few times a day. One side effect of my surgery is some swelling due to fluid build up, even with the drains. With five of my lymph nodes gone, it takes longer for my body to re-absorb the fluid. I also have to “milk” the tubes, by squeezing and pulling on them so any debris is flushed into the bulbs. It’s amazing how quickly I went from nauseated and repulsed to fascinated and curious. What is this stuff? Why is it changing? Where does it normally go? What is the debris? Do I event want to know what the debris is?

Because fluid is building up, I have to massage it toward my drains, which I can feel under the skin with my fingers. But I am completely numb on my left side starting in my armpit and going down to the bottom of my ribcage. It’s like when you get novocaine at the dentist, that feeling that your face is HUGE. Who doesn’t hate that feeling? It’s creepy. It takes all I have to massage that area, and puts me into a mini panic. I can’t feel it, but I know I’m doing it. Am I doing it hard enough? Then I encounter the hard bump that is a drain under my skin, and I pace back and forth. Pacing is my attempt to self-sooth.

Sometime next week the drains will be removed. When I asked the nurse how it’s done, she said in a cheery voice, “Oh, it ‘s just a quick 1-2-3.” Suuuuure it is. I am not looking forward to that appointment.

This all reminds me of some terrible horror movie. How the hell did I land this role?

Health insurance

September 30, 2015

Before I was diagnosed with cancer, Amelia and I were making some pretty big changes in our lives. Closing Felicia’s, committing to our next business, taking out loans, working non-stop on the new building. One of the ways we were looking at saving money was on health insurance. Felicia’s has been paying our health insurance most of these last 11 years. Now that Felicia’s didn’t exist, we needed to switch to Obamacare, so we decided to make every possible health care appointment before the end of the month.

Amelia knows me well. When she first started shopping around for health insurance, she knew it had to be really good because I’m the type of person that would sever my finger off and duct tape it back on if I had a hefty deductible. Amelia also knows health insurance well, and she knew she had to make it easy for me to go to the doctor or I wouldn’t go. We ended up with a “Cadillac” plan: zero deductible, awesome coverage. We have some small co-pays, but that’s it. This plan costs $1200 a month for the two of us together, something I’ve been constantly complaining about for 11 years. Until now.

I’ve always been acutely aware that most of us are only a few steps away from becoming homeless. One unexpected bad situation like a health crisis can ruin any of us, can bankrupt us, take away our homes, and even put us on the street. Deductibles and copays can kill you financially. If we had a 20% copay, just one of the tests I had done cost $5000, that would have cost us $1000 out of pocket. The surgery will likely be about $40,000, that would have been an $8,000 copay. I would be looking at $9000 out of pocket expenses right there, and that’s only the first four weeks of care. Much more could follow. Chemo? Reconstruction? A brief stay in the ICU? We’re looking at over $100K out of pocket. My 11 years of paying into health insurance just paid off.

There are people who die from many lesser things than cancer because they can’t afford health insurance. Amelia and I certainly couldn’t have afforded to pay $1200 a month ourselves for the past 11 years if our business hadn’t covered it. I’m incredibly thankful, but at the same time guilt-ridden for any other person who doesn’t have the luxury of good health insurance. These days, that is exactly what it is – a luxury. No one should be dying because they can’t afford the astronomical cost of health care, but they are. They die from a cold, the flu, an infection, cancer. That just isn’t right. Health insurance should not be an elitist thing, but it is.

So to every person who ever bought a drink at or worked at Felicia’s, I thank you. And when I’m able to, I want to hug every single one of you. YOU saved my life.

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.

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.

Crossroads

September 23, 2015

If there is a crossroad where surreal, nightmare, and reality meet, then I’m at it. There is no reference point to where I’m at, no how-to manual. I guess I’m writing my how-to manual right now.

Today I had to walk away from the T-burg building knowing that I would not be back to physical labor for four to six weeks. It was a pretty crappy feeling. I feel guilty that I’m leaving so much undone.

When we were at the surgeon he first said I could be back to work in two weeks. Amelia stopped him immediately and told him that I am a physical worker. “Oh, no, no, no, at least four weeks…if you’re lucky. More like six weeks.” Ha. Two weeks. Because clearly women sit at a desk all day. Not this woman.

Psychologically the next few weeks are going to be tough. I already have a tendency for depression; tendency is putting it mildly. Movement keeps my depression at bay. The more I move, the better I feel. No matter what my emotions are in the coming weeks, things will move around me, life will move on around me, and I will have to find a new way to cope. This is a danger zone for me and just because I’m aware of it, that doesn’t mean I won’t disappear into some dark spot. But I always find my way out and this will be no different because everything is temporary.

Here’s to tomorrow, to the next phase of my cancer journey.

How low can you go?

September 22, 2015

It is what it is, but maybe I can guide it just a little bit. Maybe.

When I was in elementary school, around 3rd or 4th grade, I started getting migraines. The pain would last for hours and was unbearable, followed by copious amounts of vomiting and a sensitivity to light that lingered for days.

One day I got a blind spot and fell down the stairs at school. I don’t know if anyone really knew what to do with migraines then. I’m sure the nurse asked what happened and was baffled when some 3rd grader said she couldn’t see her feet. I’m positive it freaked my parents out, too. I was either really good at getting out of school or something was going on.

The migraines continued into high school, and in 9th grade my mother took me to see a neurologist. Migraine research was pretty new and he suggested I see a colleague of his who was experimenting with biofeedback and pain management at the time.

The second doctor showed me how to use my breath, my body, and my brain to control my migraines. I was hooked up to all sorts of gadgets measuring my heart rate (EKG), temperature, and brain activity (EEG). One of the first times I came out of the room, my legs were like jelly, and it was hard to walk. My mother thought he gave me a sedative. He was quite enthusiastic about how “low” I could go, and every week I went lower. It was the best drug ever and it was inside my brain. This doctor changed my life, and I don’t even remember his name.

It wasn’t the first time I experienced meditation. My science teacher in 7th grade had taken our class into the woods and sat us all down on logs while he talked about nature and connectedness. During the last part of class he had us close our eyes and “listen intently to nature.” He wanted us to relax into it. We were 7th graders, little shits. Most of the kids were snickering, poking each other, rolling their eyes, yawning. But something happened for me. As I was listening to the teacher and the birds, everything went completely silent. It felt it as if I separated from my body and from time. It was like I was moving forward and backward at the same time. I was here, in the moment. It’s like when you fly in your dreams. THAT feeling. I look back at this and realize it was my first experience with drugs. This is the high people chase, and it’s pretty goddamn awesome. This is what meditation feels like for me now, and has since I was 12.

I’ve never had a full blown migraine since the biofeedback. I get a blind spot. I meditate. It goes away, quickly. What does this have to do with cancer? When I think of recovering from surgery physically and emotionally I’d rather use meditation than pills. Don’t get me wrong, I’ll take pills if I need them without hesitation. But I’m pretty sure I already have the best drug possible inside me already.

We have cancer

September 22, 2015

By Amelia Sauter

We have cancer. That’s what it feels like when someone you are that close to gets a diagnosis. WE have cancer. At least that’s what it felt like three weeks ago at the Wende Breast Clinic. The sad clown face on the nurse that day as she walked Leah out from the biopsy shouted a diagnosis that they couldn’t say out loud before the pathology report came back. I called my parents that night and said Leah is going to be told tomorrow that she has cancer and I don’t know what we are going to do. The shock, the grief, the WTFs. Leah and I are going through all of it together.

Everything in your head comes to a crashing halt when the cancer diagnosis comes. And the ripple effects of the crash shake up every corner of your life. For us, that ripple has an aftershock that most people don’t have to deal with: We were planning to open a new restaurant this fall. So now we are both indefinitely unemployed. Until we get pathology reports back after surgery and meet with an oncologist, we are both in limbo. No plans can be made. Talk about bad timing. For now, I paint and I cry. I paint every fucking wall in that building, every ceiling, every piece of trim. I paint and I cry and I hope. It’s all I can do.

We have cancer is changing to Leah has cancer now that the surgery is approaching. Our paths are separating. I can’t do that part with her. I can’t lay on the operating room table with her and join her in in the LaLa land of anesthesia and in the exhaustion of pain and painkillers. I am not losing a breast and I will not know the same grief as her.

My path is a river of utter helplessness. I have never before had the feeling of wanting so badly to protect the person I love most and been able to do nothing. Every second, I fight the urge to grab her and run from the hospital and take her away from all this. But I can’t save her. It is the worst feeling I have ever had in my life.

It is what it is

September 19, 2015

I have never had a stitch (although I should have). I have never gone to the doctor for a broken bone (although I should have). The thought of someone cutting a body part off of me and sewing me up is very unsettling. It’s a large breast and there are going to be a lot of stitches and staples.

There will be 2-3 drains with drain bulbs stitched into my chest. Creepy and gross. I’ll have to measure the amount of fluid that comes out of the drain bulbs every day and when it’s under a certain amount they get taken out.

It doesn’t matter what I think right now: Whatever is in my body is in my body and has been there. I’m trying not to overthink it too much.

My sentinel lymph nodes will get taken out and tested on Thursday during the mastectomy. Sentinel lymph nodes are the first nodes that the cancer would travel into if it travels. How the doctors see which ones are the sentinel nodes is by injecting a radioactive tracer a few hours before surgery. Imaging with blue dye is then used to see which nodes turn blue first; those are the sentinels. A pathologist tests the removed nodes right there in the operating room and results will be negative or positive that cancer has passed through them. If yes, then more get taken out. If no, there’s a 15% chance that it will be a false negative. Either way we wait 7-10 days for a comprehensive pathology report to tell us whether or not the cancer is invasive. The initial biopsy was noninvasive, but it was teeny tiny and is not a guarantee.

Size matters with cancer, and bigger is not better. Mine is giant. Statistically, there is a better chance some cancer cells slipped out through my lymph nodes and into my system. But there’s always a chance that they did not. I don’t feel like I can hold onto either scenario because what’s there is there, and my thoughts cannot change it. Yet I am thinking about it a lot.

I’ve never been in a position before where it doesn’t matter what I want. I have no choice right now and I don’t like it one bit.

I don’t want to have cancer and I don’t want to lose my left breast.

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.

Stress, panic, anxiety

September 17, 2015

We all go to the doctor and get that question, “Have you been experiencing any stress lately?” Who the hell says no to this?! If you don’t experience stress I’m pretty sure you are not contributing to society properly. We live in a world overwhelming us with bad news every minute of the day. Yes, we are all stressed.

I know stress. Too much to do, not enough time to do it, over extended, maxed out.

I know panic really well. Those intense moments of holy sh*t, I’ve gotta get out of this room full of people. Or holy sh*t, that spider is going to kill me. Or holy sh*t get me outta this dentist’s chair. Panic is my default really. I am quite comfortable with panic. It’s relatively quick and not based in reality. It goes away.

Now I’m discovering anxiety. I truly had no idea it was any different than panic. But anxiety is based in reality. Cancer is my reality. And the anxiety is not going away easily. This is going to be a long haul. There is tension in my stomach that makes me want to vomit, a tightness in my chest that goes all the way up to my throat. And. It. Doesn’t. Go. Away.

For years I’ve brushed off people complaining about anxiety because I ignorantly thought they were making a big deal out of a small thing. I was so wrong and I apologize to anyone that experiences anxiety on a daily basis. It’s the typical scenario of you-don’t-know-until-it-happens-to-you. In a way I’m glad I’m experiencing anxiety so I can have more compassion for those around me.

Fight or flight

September 16, 2015

Fight or Flight?

I’m in the Fight camp. I am not a runner. If I run, I run toward the car that’s on fire (true story), toward the two large men about to punch each other (true multiple stories).

When we found out the surgery date I had an overwhelming urge to run away as fast and far as I could. Overwhelming urge doesn’t even really begin to describe the intenseness of flight that I had. Then comes the paralysis, because I have zero control. Then comes tears of loss and grief. Then Amelia and I hug for a long time. Then I go to work.

Cancer never comes at a good time, but goddamn, this is the worst time. Five days before my diagnosis we closed a business that we were done with physically and emotionally. It was a cathartic and extremely emotional time saying goodbye to Felicia. We closed at our peak and it felt great. It was a huge relief to let it go and prepare for our next big adventure. We are unemployed. And, if the irony wasn’t enough…

In August my Mother was diagnosed with breast cancer. It was caught extremely early by a radiologist who works like a detective. These are the health care people you want on your team. They operate like investigators, they want answers to the whats, whys and hows. My Mom’s cancer was tiny, BB-sized, and the radiologist found it. She got a lumpectomy relatively quickly. Every cancer is different and Mom’s is invasive, aggressive and HER2+ which means now she has to have chemotherapy for 3 months for a goddamn BB. Mother AND daughter? I hate you Cancer.

Becoming an expert

September 16, 2015

In thirteen days Amelia and I have had to become breast cancer experts, specifically my cancer. Amelia knows cancer, but not breast cancer.

My nature is to learn. The minute I got home I started Googling: DCIS, IDC, micro calcifications, macro calcifications, necrosis, high grade, 11 centimeters, cancer genes, HER2+, mastectomy, reconstruction, no reconstruction, chemotherapy, radiation. There is so much information out there. Better yet, there are forums of real people talking about their experiences, particularly at www.breastcancer.org. The forums on that site are a wealth of knowledge. Women (and men) sharing their stories, diagnoses, surgeries, what works, what doesn’t work, stages, and everything in between.

One in eight women will get breast cancer. You know eight women. Think about it: one of them most likely will have to deal with breast cancer. These are things I already thought about before I was diagnosed. I’d be in a room full of my favorite women and morbidly think, how many of us are going to get cancer? It’s a sad fact.

I hereby grant breast cancer asylum to seven women.

Tick Tock

September 4, 2015

I’m generally a gloomer and doomer, but Friday I was oddly hopeful as I waited for the phone to ring with results of the biopsy.

Something happened in my mid 30’s that I like to call, “So now I’m dying.”  A weird ache, digestive problem, cluster headache, muscle strains; all of these things clearly meant that I was DYING. End-of-the-world. Well, no, Leah you’re just getting older. You’re not dying, your body is changing. This time would be the same thing, right? Wrong.

Around 5:30 Dr. Murphy called and told me it was cancer. He told me I needed to come back and get an MRI. It was a long weekend so the next appointment was three days away. Three. Days. That’s a long time to sit with all of the feelings that come with the words, “You have cancer.”  This will be my new reality, waiting for appointments to shed more and more light on a very complex and individual subject: Cancer.

When a doctor ends a phone call with, “we’ll have your films ready so you can bring them to your breast surgeon and oncologist”, it’s pretty surreal. Yes, he is talking to me.

Hi, I have cancer

September 3, 2015

“You have really complicated breasts”.

This is nothing I didn’t already know. They’re extremely dense and usually have a lot of fluid-filled cysts. Most of these cysts I don’t even feel.

The technology at the Elizabeth Wende Breast Clinic in Rochester, New York is fantastic. There are now mammograms that are specific for women with dense breasts.  Normal mammograms are easier to read; they’re clear. My mammograms are like a cloudy night sky. Technicians have described the films as “having a lot of noise”.

I always have a diagnostic appointment the same day of my mammograms to get a few cysts aspirated via ultrasound and needle aspiration. Today, the Doctor zoomed right by my cysts and went to my lymph nodes. This was not good.

He settled in on the left one and said, “Your lymph nodes look good, but what I really want to get a look at is this”. He moved over a long band that looked like a nebula with tiny, bright stars clustered together and scattered throughout it.

“These are calcifications. We usually don’t worry too about these when they are singular and symmetrical. But, when they are clumped together we get suspicious. We’re going to need to do a core biopsy.” The abnormal section he showed me was large, really large. It looked like 4-5 inches around the outside of the breast.

A feeling that I’ve never had before creeped in, and I knew I was going to lose my breast.