Author Archives: Leah Houghtaling

About Leah Houghtaling

I'm a business owner, a cook, a bartender, a woodworker, a musician. If you can think it, I can make it. Oh, and as of September 2015 I have breast cancer and one less breast. Unfortunately, I can't make another one of those.

No, you can’t

Posted by Leah Houghtaling in Uncategorized

During the first few days after my diagnosis, a thought kept nagging me: I did this to myself. I fucking did this. The reality is no, Leah, you can’t give yourself cancer. Also, you can’t will yourself to win the lottery. Darn it. Cancer happens every day to unsuspecting people of all walks of life. Instead of trying to grasp at why-why-why (smoking and coal mining and other environmental hazards excluded), we need to figure out how to get rid of it.

The nine months leading up to my diagnosis were the most stressful months I have ever had. We were renovating a building to start a new business and trying to figure out how to deal with the very needy business that we already had. We were working 10-12 hours a day, seven days a week, there were no breaks, no downtime, no vacation. I am basically a one-woman wrecking and rebuilding crew. That sucks for me because I know how to do too much. There is such a thing as knowing how to do too much because how can I possibly delegate when someone asks, “how can I help?” Sure, can you put in this tile floor? Re-wire a bunch of lights? Plumb some drain lines? Build this wall? Build a bathroom? Trim out this room? Build kitchen cabinets from this old flooring? Sister a few joists in the basement? Install a hot water heater? Install a furnace? Not a lot of people come with these skill sets. Except me.  -sigh-

Two months ago I realized I had a bald spot. A goddamn bald spot! Women aren’t supposed to have bald spots! I went to the dermatologist and she told me that women are more likely to get alopecia than men and that it’s usually caused by stress. Your scalp basically squeezes the hairs right out of your scalp in a tidy, little round pattern. I was pretty agitated about it and very irritated with myself and my stress level. I made my hair fall out!  WTF?! Then cancer happened and I realized that I am not some all powerful being with utter control over the approximate 37 trillion cells in my body. I can’t give myself cancer or make my bald spot grow in more quickly. Don’t get me wrong, continuous stress is not good for me or anyone else. But I’m going way too far when I try to blame cancer on stress.

There are so many things that need to happen for cancer to form in our bodies. Me thinking that I or anyone else could cause their own cancer is naive, hurtful and an insult to every person who as ever gotten gravely ill; children, elderly people, happy, healthy people, angry people and everyone in between. Unfortunately, we’re aren’t full of magic or we’d all be lottery winners by now.

Body image after a mastectomy

Posted by Leah Houghtaling in Body Image and tagged with ,

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

Posted by Leah Houghtaling in Mastectomy and tagged with , ,

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

Posted by Leah Houghtaling in Diagnosis and tagged with , , , , ,

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

Posted by Leah Houghtaling in Mastectomy and tagged with , , , ,

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

Posted by Leah Houghtaling in Uncategorized and tagged with , , ,

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.

Balance and strength

Posted by Leah Houghtaling in Mastectomy and tagged with , , , , , , ,

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

Posted by Leah Houghtaling in Mastectomy and tagged with , ,

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

Posted by Leah Houghtaling in Mastectomy and tagged with , , , ,

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

Posted by Leah Houghtaling in Diagnosis and tagged with , , , , ,

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

Posted by Leah Houghtaling in Mastectomy and tagged with , , , ,

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

Posted by Leah Houghtaling in Mastectomy and tagged with , , ,

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

Posted by Leah Houghtaling in Uncategorized and tagged with , , ,
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?

Posted by Leah Houghtaling in Uncategorized and tagged with , , , ,

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.

It is what it is

Posted by Leah Houghtaling in Uncategorized and tagged with , ,

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

Posted by Leah Houghtaling in Body Image, Mastectomy and tagged with , , ,

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

Posted by Leah Houghtaling in Uncategorized and tagged with , , , ,

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

Posted by Leah Houghtaling in Uncategorized and tagged with , ,

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

Posted by Leah Houghtaling in Diagnosis and tagged with , ,

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

Posted by Leah Houghtaling in Uncategorized and tagged with ,

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

Posted by Leah Houghtaling in Diagnosis and tagged with , , , , , ,

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.