Genetic testing

Getting tested for the 26 cancer genes was extremely nerve-racking for many reasons, but mostly because the woman who talked to us did so with unreserved glee. There was a twinkle in her eyes when she asked, “Do you know why you’re here?” Genetic Jessica didn’t give me a chance to answer. Instead she leaned in across the table and announced dramatically, “Because you are WAY too young to have cancer. WAY too young. And I’m going to tell you all about the genes you don’t want to find out that you have.” She leaned back into her chair, tilted her head to the side and gave me the oh-you-poor-thing-you-have-cancer face. Cancer face, that’s what Amelia and I call it. We all know what that face looks like. If you think you’ve never seen it, try replacing the word ‘cancer’ with other words, like divorce, miscarriage, losing a job, break up, or addiction, to name a few.

When I gave the geneticist my history (mother just diagnosed with breast cancer, brother with an unidentified melanoma-type skin cancer a decade ago), she gave my a very grave look and pointed at one of the cancer genes on her chart of horrors. “This gene right here links breast cancer, melanoma and pancreatic cancer.” She raised an eyebrow and gave us a knowing look followed by a dramatic pause. Who the hell is this woman? I wondered. And why is she pelting us with massive amounts of negative information without taking a breath, almost proud of herself for the speed of her delivery of morbid news. I felt like she wanted to reach across the desk and shake me by my shoulders and then squeeze me into her bosom. Back off, lady.

A month later I found out that I don’t have any of these genes, but Genetissica wanted me to come back to meet with her anyway. Why? Well, Leah, there’s this other gene, that could be meaningless, and we don’t really know what it does, if anything, and it won’t affect your treatment choices, but I can tell you all about it in person. Um, hell no, Genetissica! I’m not spending another hour in your office of doom and drama.

Genetic testing is pretty amazing though and will continue to be a great tool for all sorts of illnesses. This ‘other gene’ I have is RAD51C, and there’s not enough data out there to even be talking about it yet. Ask me again in ten years.

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First chemo treatment

One of the pre-meds I received in IV form was a hefty dose of Benadryl. Saying it made me tired is an understatement. That stuff knocks me out. If it wasn’t for the other nasty chemical cocktails* I was getting afterward, I might enjoy the trip to Lala Land. But Greedy Little Cancer loves to takes up every possible space in life. What an attention seeker. Yup, we see you there, Cancer. No one invited you. You can get out, and take all your nasty offspring with you.

Sitting in a sterilized cubicle for five hours made me feel pretty restless and bored. I brought things to read but the Benadryl made me so loopy it was hard to retain anything. I just read the same sentence over and over. Lucky for me that I love driving games, so out came my iPad and my inner 13-year old. Drugs be dammed, I was going to blast down a digital highway at 150 miles an hour. Hell, yeah. Everything in moderation, though. I will never ever own a Wii or anything like it. Ever. Harmless fun can easily morph into an addictive, mindless obsession that gobbles up hours and hours. I’d always prefer to be physically doing something. But during this time of cancer, I will drive as fast as I can as often as I can within the safety of my iPad. No seatbelt required.

The first treatment takes the longest. Each drug is set up to go in at a slower rate in case of any adverse reaction. I had no reactions at all. The only side effect I’ve had so far is a metallic taste in my mouth. I’m pretty sure this will not go away for the next four months and ginger candies will become my one of my new best friends. I haven’t had any nausea so far, knock on wood.

Port incision and bruise

Port incision and bruise

My port is a triangular ‘power port.’ It is larger than a regular port, and can receive fluid at a higher rate. The heart-shaped bruise in the picture is where the port sits (and bulges) under my skin. Not everyone bruises, but it’s like a blood draw where sometimes you can get a temporary discoloration. The surgeon had me initial the area pre-surgery.

I was quite disturbed to see how large the port incision was. It’s around 20 stitches. Update: I originally thought my mastectomy scar was 30 stitches. We asked the surgeon last week and he said it was more than he could count, and that he lost count after 50. Holy Franken-chest Stitchville.

*The day’s nasty chemicals include: Benadryl, Decadron, Zofran, Pepcid, Taxotere, Carboplatin, Herceptin, Cyanocobalamin, and Heparin.

Depression vs. Cancer

As I sit in my chemo cubicle and seven different chemicals are dripped into my vein, I can’t help but think that depression has got nothing on cancer; at least for me it doesn’t.

Honestly, I don’t have the time or energy to give in to depression right now. For quite a long time I’ve thought that depression is very selfish on my part. Now I clearly see my depression as a choice: I can choose to be depressed or I can choose to not be depressed. Depression is a very grey area. Cancer is not grey; there is no choice involved in getting cancer. The past six weeks have made me stop and ask myself, How could I possibly give in to depression, something that is so vague? Cancer is incredibly real and concrete. I have to give in to the fact that cancer is here, it is real, and it needs to be stopped by any means necessary.

I was defined by trauma and depression, but now cancer is reshaping me inside and out. So, Depression, you can take a hike. You’ve been replaced.

Mind, Matter, Modern Medicine

Chemotherapy starts Wednesday; the port is implanted today.  My body is essentially going to be poisoned with the bark of a yew tree, a heavy metal, and an antibody. The bark of the yew tree, of course, is the one that fascinates me. Someone figured out that a tree’s bark could aid in the cure of cancer. Science is amazing.

Now is the time I really need to get myself low. Deep breaths. I tend to be a shallow breather if I’m not paying attention. My breath is up high in my chest unless I focus on it and push it down into my belly. That is a practice, learning how to breathe correctly. Sounds easy enough: in through your nose, out through your mouth. But there’s a lot that needs to happen in between and during.

I will be getting into my meditation zone for chemo. I feel myself settling in and preparing for it. I find meditation a very personal thing, one I don’t talk about a lot because it’s so individual, and honestly, it feels a little weird to share. I think a lot of people get stuck on the word “meditation,” on what it means. People have visions of a monk sitting uncomfortably cross-legged for hours, but I see meditation as anything that helps us get out of our heads, a moment when we aren’t thinking and we aren’t reacting, and we’re just observing for two or twenty minutes. For me, meditation is primarily about being still, but I can also get to a pretty low and still place by being outdoors or playing music. It’s possible that virtually everyone does some form of meditation; they just don’t know they’re doing it.

I’m on Cancer Time now

Acknowledging that there may be cancer cells floating around inside my body waiting to land, divide, and multiply is hard. I want to ignore it and not think about it but the thought nags at me throughout each day. There’s no way of knowing, no tests that could find such tiny things. Aches and pains that seemed normal before September 3, 2015 now easily turn into a quiet paranoia. I find that when something is really truly wrong, there is a stillness and calm that sets in, a dead quiet in my mind. Not really what I would call peaceful; it’s more like an intense focus on the situation, whether it’s that I drilled my thumb, cut a two-inch gash in my hand, watched Amelia’s face swell after a bee sting, or witnessed someone get hit by a truck. Panic doesn’t work in these situations – a purposeful calm does.

The fact is, I’m two stages closer to the real worst case scenario than I have ever been, and it’s an uncomfortable emotional state to be in. I am not usually a time-focused person, but cancer is now forcing me to think about things in more of a time-critical way. When will I be 100% recovered from surgery? When will I adjust to not having a breast? What will the scar look like in a year? What will chemo be like? When will I recover from chemo? When will I lose my hair? When will my hair grow back? When will a day go by that Amelia and I aren’t consumed by cancer? When will I feel normal again? When can I say I am cancer-free? When will I feel safe?

No limits for Leah, please

Before cancer I never really thought about my body’s physical limits because there weren’t any, or I just ignored them if there were. When I was in my late twenties, I got a pretty serious neck injury from playing rugby. (If you know rugby: I was the hooker. During a scrum the other team came in extraordinarily low. My props were too high and I was flipped over by neck, twice.) I should have gone to the hospital. I look back at this and think what was wrong with me and every other person who saw this? Oh, yeah, we were in our twenties.

For days afterward I could hardly hold my head up and I couldn’t move my neck at all. Whether I was standing or sitting, the pressure of my head on top of my neck was excruciating. I played rugby a few more months. Not too bright. I finally went to a neurologist who found two precariously bulged discs in my neck, C4 and C5. He told me that I couldn’t lift more than one grocery bag in each arm, forever. He had a list of things that I could never do again: rugby (duh), running, mountain biking, rock climbing, anything where I’d be looking upward or jarring my spine.

It was a pretty grim prognosis, and one I couldn’t accept. So I started icing my neck regularly, stretching, weight lifting, and strengthening other parts of my body. I had to re-learn how to lift without agitating my neck; that was my goal. It took five to ten years, but today my neck has no physical limits and I am pain-free.

Since my breast surgery, I’ve been counting down the days until I can resume normal activity; the doctor told me four to six weeks. So last week I announced to Amelia, “Twenty-one days!” Meaning I’d be able to dive back into work then. She gave me the oh-boy-you-really-have-NO-idea look and said, “You know you won’t immediately be 100%, right? That’s just how long before you can start working again, and building up your strength and flexibility is going to take time. You’re not going to be at 100% for while.” This is how naïve I am about my own recovery from major surgery. I seriously had no clue. I really did think at six weeks I’d be back to my normal crazy level of working and ready to pick up a 160 pound keg.

When I was at the surgeon’s office the other day, he said around 70% of the healing from surgery takes place in the first eight weeks, and the other 30% takes place over the next year. What. The. Hell. A year? 365 days? This type of news spins me into quite a tizzy, and claustrophobia sets in like the walls are closing in on me. I need to get back to 100% as soon as I can. Sooner than a year.

Now I start counting down again: 338 days.

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.

Bound by trauma

I think we are all more attached to pain and trauma than we should be. We have to actively seek out the good news in the world because so much trauma is thrown at us every day. This is the scenario: one day I push you out of the road and save you from getting hit by a car; the next day I drop something on your foot and break it. The broken foot is what stays with you, the imprint of pain. Years later you will still vividly remember me breaking your foot. We hold onto trauma like it’s our favorite stuffed animal. Trauma is our security blanket, our little Binky.

Last week after I had my drain removed, Amelia and I had lunch with her parents. We were sitting outside at a sidewalk cafe and ten feet away from us, a pickup truck hit a bicyclist. A terrible noise, a body thrown up onto a hood and tossed to the ground, a bicycle run over. It was traumatizing, for me, for the cyclist, for the driver, for everyone else witnessing it. Remember when I said I am the person who runs towards the fire? Yeah, I ran towards the moving truck. The woman with 30+ stitches in her chest is running out into the street. Amazing what adrenaline can do. The stitches, pain, and cancer trauma were all left in my chair; and the rest of me was out in the street with the cyclist. He miraculously was fine but very, very shaken up as was the driver of the truck. The cyclist was wearing a helmet, thank Dog. Amelia and I went into “take charge mode” like we often do, she with the cyclist, me with the driver. When it was over the police officer who came to the scene told us his aunt had breast cancer, then our server, who had also witnessed the accident, told us her Dad had just been diagnosed with brain cancer. The cafe was her Dad’s place. Here we all were, bound by trauma.

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.

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.

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.

We all say dumb things sometimes

I find myself saying things like What a bad time to get cancer -or- Well, there are worse cancers I could have gotten. I need to stop saying these things because there is no “good time” for anyone to get cancer, ever. Never would actually be a good time. Cancer is bad; it doesn’t matter what kind. It’s here, and it’s here to take as much of your body as it can.

People die from cancer every single day. People die from breast cancer every day. Something I’ve heard more than once from people already is, Don’t worry, women don’t really die of breast cancer these days. This is from www.breastcancer.org: “Breast cancer death rates are higher than those for any other cancer, besides lung cancer.”  This isn’t the flu we’re talking about here. Minimizing cancer is wrong. I have minimized other peoples’ cancer and I was wrong. It’s Cancer with a capital C and it’s scary no matter what the type or stage. It levels all the playing fields, but hopefully we can learn to play to our advantage on our home field.

It’s not just me saying dumb things to myself. Several people have said to me, Well at least you got it early. Um, have you seen that I don’t have a left breast? My mastectomy was not optional. And cancer is my lymph nodes. This is not early. This is aggressive and fast moving. I am not out of the woods, and I don’t really want to think about how this could be worse.

I have to avoid generalizing as we get deeper into this because the lines between minimizing, over-reacting, and reality are really blurry. Now is the time to be calm, clear-headed, and aware. I’m trying not to freak out.

No, you can’t

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

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?