Karla

When you get diagnosed with cancer, you meet a lot of other people who have or had cancer. It’s like another family, and we are all connected through our struggles, through our mortality, through our fears, through our perseverance, through the change and uncertainty that cancer brings.

For many people, cancer is a one-time diagnosis. They get treated and it doesn’t recur or metastasize. Others start off with a stage 4 diagnosis, or have a lump removed and then months or years later find it’s spread to an organ.

Sooner or later we lose someone to cancer from this new family. When one of these new family members dies, it’s a loss for all of us.

Karla was one of my radiation techs that I saw every day for six weeks. She was a breast cancer survivor and a constant reassurance on radiation days. She had the bedside manner that you wanted next to you when you were in that very vulnerable position on the radiation bed. She was comforting, smart, and sensitive. Your cancer treatment team isn’t there to be ‘best buds’ with you and there are only a few people during my treatment that I could say I truly connected with beyond the patient-caregiver relationship. Karla was one of them.

I saw a lot of robotic doctors and nurses while I was sick, people who say mmm hmmmm mmm hmmmm without really listening. Karla was real. She was transparent. She had compassion and a deeper understanding of exactly what I was going through because she had been down that path. She saw herself in me. I saw myself in her.

When I went back to my radiation oncologist for my six month check up, Karla was gone. She had died the week before from cancer that had come back with a vengeance. When the nurse told me all that would come out of my mouth was “No!” and “Why??” and “I don’t understand.” I couldn’t wrap my mind around the fact that the Karla I knew had died from her cancer. The grief I felt as I drove away from the hospital was overwhelming.

I didn’t know Karla well, but it was like I knew a part of her well. Sometimes there is something that connects us to someone else that is indescribable. I was in the middle of treatment, so I don’t remember the things we talked about or the things she told me. When the radiation nurse told me that Karla had died, I couldn’t remember the details Karla had shared with me about her own life. I felt guilty about that, and selfish. And betrayed: by the lack of details in my memory of her, by life, by death.

Only a few weeks passed between Karla’s cancer relapse and her death. I knew Karla had dogs, not children. I knew she was smart, compassionate, and present. I knew she was sad when she talked about cancer, whether it was mine or hers or someone else’s cancer. I knew she had a husband that she loved who loved her supported her. When I visited her obituary page, I saw how many other people loved her, too, like I did.

We’re all so caught up in our own lives, and in the what ifs. I was just trying to get through treatment, and Karla was there for me. I looked forward to seeing her every day. For all I know she had already been diagnosed with Stage 4 cancer. I never considered asking. I thought she would always be there.

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4th round of chemo

Today was the over-the-hump-day for chemo. I am now more than half way through my treatment. I’m still quite neutropenic, and my liver numbers are through the roof, and will be for the duration. I will try to lay low for the next two months.

I’ve had some discomfort in the area above my mastectomy scar for the past week. It feels like it’s bruised and tender to the touch. Today during my exam, my oncologist found two nodules (lumps) there. Big trigger of emotions for Amelia and I. BIG. We both felt like the bottom dropped out, again. The doctor said they could be cysts, but she was very concerned and said I need an ultrasound as soon as possible. We are trying to process this information. Worry does not help. Assuming does not help. Waiting for answers is torturous.

I’ve always had cystic breasts. When I would get my yearly mammograms I’d get my cysts aspirated as well. And there were LOTS of them, giant “whoppers,” as one breast specialist told me. When a surgeon performs a mastectomy he/she tries to take all the breast tissue. It’s hard to know when to stop cutting, and inevitably some breast tissue could get left behind, especially when they’re dealing with a very large D cup. That’s why it’s possible these lumps could be my typical cysts, even though my breast is gone.

Once again, it’s crappy timing around a holiday weekend, just like my original diagnosis where we had to wait through Labor Day for an MRI. Today is Wednesday, and the ultrasound appointment isn’t until Monday. There’s a really good chance that the lumps will get biopsied to rule out the worst case scenario – that cancer is growing and thriving on my chest wall while I am freakin’ getting chemo. Hell, no!

I just keep telling myself, They’re filled with benign fluid. They are filled with benign fluid.

Surgeons aren’t gods

I really like my surgeon. He is a fact-based, down-to-earth, extremely driven man who takes his time to explain every detail to us, even when he goes way over our heads. This is a man who reads, studies, and soaks in everything he can about breast cancer. He is a breast surgeon, not a general surgeon. There’s a BIG difference. He has operated on thousands and thousands of breasts. During our second meeting with him, he got a text message about a new study published that day and was excited to go home and read it. This is my guy.

The day after my surgery, he visited me in my hospital room at 7am. He sat on my bed and talked to us for half an hour before his regular day even started. He was hoping to get me in a trial for people with micrometastases but the deadline was before my pathology report would be back. He offered no reassurances about my cancer, and I don’t feel like he should. No one should tell you everything is fine when they don’t know that it is. Hunches don’t work here, numbers do. My surgeon has never said everything will be fine. He has said, “For all we know, you could be cancer-free right now. But we don’t know. There could be some cancer cells floating around in your body, or there might not be. They’re too microscopic to see on any scans or tests.” Regarding treatment, he deferred to my oncologist. He told us that he has opinions, but will always defer to the oncologist because they are the treatment expert.

Not all surgeons are the same. I was incredibly unimpressed with my mom’s surgeon. He was an oncology surgeon, yes, but he seemed fairly clueless about breast cancer. On the day of her surgery, he sauntered in and questioned what the oncologist wanted done in preparation for chemo, because he said my mother didn’t need chemo. As if the surgeon’s opinion was more important than the oncologist’s. When you go in for surgery, it’s all pre-planned, all written up, orders made. There should be no question about what’s happening. After we pressed him, he called her oncologist – an hour before surgery – because he thought he knew best. The oncologist told him to stick to the plan.

I don’t get it. Don’t you usually check into this shit before you cut someone open? I mean, really? Don’t you check into the patient’s history? Mom needed a port for chemo and the surgeon’s opinion – which he repeated more than a few times – was that she didn’t need chemo so she didn’t need the port. This made my mother and father very anxious. The fact is, Mom is HER2+. It is an incredibly aggressive cancer, and the protocol for the size of her tumor is to administer chemo. Fact. You don’t need to be an oncologist to know this; you can simply google it.

And after my mother’s lumpectomy, the surgeon waltzed back into her room and declared her “cancer-free.” Once again, if you know anything about HER2, you know that HER2 likes to travel, and there is a significantly greater chance of recurrence without chemo. How he can be an oncology surgeon and be this clueless about the nature of breast cancer? Two thumbs down, Mr. Surgeon.

Fortunately, Mom has a fantastic oncologist: smart, detail-oriented, and a cancer-survivor himself. She is in good hands.

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.

Great balls of fire

These balls gotta go! Warning: graphic descriptors ahead.

Tuesday night I was emptying one of my drainage bulbs, aka ‘my balls’ and a strong odor of fish startled me. I mean, I did eat fish for lunch and dinner, but it was cod which is relatively bland. Was this normal? Of course I had to Google it.

It’s a hard one to phrase. Drainage bulbs smell like fish? Can drainage bulbs smell like food recently eaten? Amelia kept repeatedly getting the same Google result about eating seafood and another unmentionable body part smelling. Highly entertaining, but very uninformative.

The next morning I called the doctors’ office hoping to hear that yes, what you eat effects the fluid in your balls (I think I like saying balls). They needed me to come in. When I got there, the surgeon was not at all concerned about the smell because I had no fever, fluid was clear, no redness, no swelling, and yes, it could very well be what I ate that affected the smell. Fortunately, the drainage bulb in question was also ready to come out because the fluid was well below 30 cc’s a day.

A snip of a stitch, a 1-2-3 followed by a quick pull, and out it came. I can’t say it hurt because it was literally for half a second. Even though much of my under arm and side are still quite numb, my body feels much better without an eight-inch tube inside of it. One down, one to go.

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.

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?

Balance and strength

September 29, 2015

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

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

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

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

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

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

Mastectomy scar

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

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

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

Pain

September 26, 2015

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

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

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

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

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

Surgery update

September 24, 2016

By Amelia Sauter

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

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

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

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

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

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

Poked and prodded

September 24, 2015 – Surgery day

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

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

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

Amelia will be posting updates after surgery.

Thanks for all the love.

Going flat

September 18, 2015

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

People have lots of thoughts about me getting a mastectomy.

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

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

So, here we go:

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

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

-awkward silence-  
Thanks for you support.

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

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

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