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.

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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.

Health insurance

September 30, 2015

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

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

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

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

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

Crossroads

September 23, 2015

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

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

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

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

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

How low can you go?

September 22, 2015

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

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

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

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

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

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

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

It is what it is

September 19, 2015

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

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

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

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

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

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

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

Stress, panic, anxiety

September 17, 2015

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

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

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

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

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

Fight or flight

September 16, 2015

Fight or Flight?

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

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

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

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

Tick Tock

September 4, 2015

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

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

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

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