There are no wrong questions with cancer

My numbers are in a healthier range this week. Just in time to get another whack of chemo. This time they dropped my doses by 20% for both the Taxotere and Carboplatin.  (I have a new tagline for Taxotere: “Taxotere, putting the tax on your liver since 1996.”)

When you are getting chemo, your liver can have an indirect effect on keeping your white blood cells, monocytes and neutrophils at a healthy level. Some of my liver numbers are high (AST, ALT) which means it is taxed and having a hard time breaking down the chemo. It also means that the chemo from three weeks ago is still in my body, hence the low blood cell counts. Lowering the doses should give my liver a chance to rebound.

I’ve said this before, but you need to be an expert in your own cancer. You have to have a doctor’s mind, do your research, learn how to read your pathology reports and blood test results. Ask questions, lots of them. There are no wrong questions. This is not a time to stick your head in the sand. Be the squeaky goddamn wheel if you need to be.

Last week at chemo, the nurse was not going to take blood for a CBC panel. That’s what tells you your neutrophil, monocyte, and white blood cell counts. Since the week before they told me I was neutropenic, I wanted to know where those numbers were. The nurse flat-out said no. This has been the first and only time I felt not listened to and had to argue to get my needs met. I challenged the nurse. She didn’t like it, but she requested the blood work, and guess what? I had zero neutrophils, kind of important to know. So push, fellow cancer sisters and brothers, push.

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Wound healing with neutropenia and lymphedema

I don’t sit much. I am standing right now as I type at our counter-height kitchen table. I’m at my best and most comfortable when I’m in motion, but usually I need some caution signs around me because I’m wielding some sharp, high-powered tool.

I am not a typical woman. I build things. I operate power tools every day. I use hand tools every day. I handle very, very sharp objects every day. I move rough cut wooden boards every day. I lift heavy objects more than I should every day. There are plenty of opportunities for bumps, scrapes, cuts, splinters, bruises, punctures, and pinches.

A while back I wrote about the warning sign that now comes with my left arm. With ten lymph nodes removed there are less pathways for fluid to drain which means when I injure myself there’s a greater risk of swelling (lymphedema). I’m not ever supposed to injure my left arm. Not ever. Not good for someone like me.

Last week I scraped my left index finger with a blunt star-shaped screw bit while I was driving a screw into drywall. It was a very minor injury, but  I was alarmed to see that for the next four days my finger was extremely red and unusually swollen. Amelia fretted about the threat of infection. I soaked it in salt water every day and used a prescription anti-bacterial cream. A week later the swelling was down, but it was still bright red and wasn’t even close to healed. That’s because I am still neutropenic from the toxic effects of the chemotherapy. Right now I have zero neutrophils, which are a type of blood cell you need to heal wounds and fight off infection.

I knew lymphedema and poor healing were possibilities, but this was a double whammy and another step into the new normal. Every time some new bad thing happens, I’m surprised. I have to somehow not get even a small scrape right now, not just on my left arm, but my whole body. Neutropenia might be temporary, but lymphedema is a life-long risk.

Not working is not an option for me right now – for so many reasons. But I have to figure out how to reduce my risk of injury.  My first step will be trying to find a pair of women’s tight-fitting gloves that allow for dexterity and range of motion while protecting my hands. Then maybe some lightweight, high tech body armor. I wonder if they come with packs….

JetsonsFly

 

What does chemo feel like?

I thought I had a pretty good sense of how chemo would feel. I knew it would be worse than the mastectomy surgery, I just didn’t know how much worse. Chemo is like having surgery six times (once every three weeks), and having to recover six times, but each time your recovery takes longer. My body’s response to chemo is not predictable. This is no I have a headache, I take ibuprofen, my headache is gone kind of scenario. Chemo kicks your ass.

Here’s how it starts: The day before chemo I drink about a gallon of water and take steroids twice. Steroids make feel like somebody else is inhabiting my body, a spastic agitated person whose language I don’t understand. I feel possessed. I usually can’t sleep that night.

Day one: Chemo. I drink at least a quart of water before treatment. All medications during chemo go into the port that’s implanted in my chest, so before we leave for Rochester I put a numbing cream on the port site.

First the nurses clean the port by injecting saline into it, then Heparin, an anti-clotting drug. A blood sample is taken and sent to the lab because they need to make sure my body can handle the chemo. A large dose of Benadryl is injected. I immediately get drowsy. I’m talking about it’s-hard-to-hold-my-head-up kind of drowsy. I watch myself slip away and it’s hard to speak or focus. I hate it. I’m at least 50% incapacitated for the duration of the treatment and the rest of the day.

The next injection is steroids. This is the reason I’m not 100% incapacitated, because the steroids counteract the effects of the Benadryl. Then comes a cortisone injection because I had a reaction to the chemo in the past. Then my chemo course of Taxotere, Herceptin and Carboplatin. Each drip takes at least 45 minutes. Some of the meds I can actually taste as they go into my port. They’re nasty, like cleaning fluid or new plastic.

If I’m lucky, I haven’t reacted to anything this week and we drive home. It’s dark by the time we get there.

Day two. I take steroids twice. I am not myself. I’m manic and agitated, but manage to get some work done on the Trumansburg building. My taste is 90% gone. The only things that vaguely register are bitter tastes and peanut butter. Taste won’t come back fully until March. That sucks. Even water tastes bad.

Day three. I have the worst heartburn I’ve ever felt and take Ranitidine which makes it about 70% better. My body temperature goes down two degrees and it’s hard to stay warm. I am incredibly tired and feel like I’m getting the flu combined with a stomach bug: headache, joint pain and diarrhea rule my day. I spend much of the day on the couch.

Day four. The heartburn is worse, and the Ranitidine is less effective. Most of the day is spent on the couch in pajamas. Body temperature is still low. Flu and stomach bug symptoms are worse. Sharp pains in my joints and organs. I can’t eat.

Day five. Heartburn continues, and the Ranitidine helps a little. I think maybe I’m feeling better and the flu-like symptoms seem to have calmed down. This is the day I have a false sense of feeling good and want to take on a project, but Amelia reigns me in from doing something like using a power tool. My head is in a fog with dizzy bouts throughout the day. Amelia and I go for a walk. I need to nap.

Day six. The heartburn lessens. My flu symptoms are mostly gone, but I can only work four hours before feeling exhausted.

Day seven. I just lost six fucking days. I’m working. All damn day. I don’t care how tired I get.

Change is good

Cancer is changing me. I tend to move through things quickly, but cancer is a different story. I can’t move through it, it has to move through me. At the same time, I never realized how adaptable I am.  I’ve already adjusted to being bald. It’s not so bad, and do I tend to change my hair style every year or so. So this year will be the No-Doo.

It’s the process of losing things that’s hard for me, not the aftermath. While I’m losing things, I feel the utter sense of having no control and that something is being taken from me. I accept it when it’s done, but I fall apart during the process.

I am more ok with the idea that everything has an apparent expiration date: my breast, my lymph nodes, my hair. They all bit the dust sooner than I would have liked, but I’m ok with it.

Cancer has forced me to re-evaluate so many things and every time I dig a little deeper I find something new. I’m becoming someone who lives for the moment, I just wish cancer wasn’t the reason. I would have rather chosen that that path on my own, but I am grateful for the opportunity to challenge myself.

Life is fragile

Life really is this fragile. I’ve said it, I’ve seen it, I’ve known it, but now I am experiencing it. Sometimes it’s hard to accept that one tiny cell is tearing me apart. Being vocal about it helps. Every emotion I have has a purpose in this, even the negative ones. Now is not the time for silence.

All of our lives intersect somehow, somewhere, all seven billion of us. Even if we don’t know each other, even if we’re on different continents. The same things happen to every single one of us: we’re born, we live, we die. Death truly is the great equalizer.

When Amelia first asked if having cancer made me think about my own mortality, I immediately said no without even thinking. It was a 100% scared and reactive response, a denial of the true worst case scenario. There are things you don’t want to speak out loud or hear, words like metastasis. And words like brain, bone, liver, and lungs: those are the words that make you think of your own mortality. Those are the words I don’t want to hear. Those are the common places HER2 positive breast cancer likes to spread to.

Amelia and I are opposites in many ways. She is incredibly comfortable with death. She’s worked with death on many levels from toddlers to the elderly. I often call her a Guide to Death, because that is exactly what she is. She is the person you want around in medical situations. I am not so comfortable with death, but I’m much more comfortable than I used to be because of Amelia’s incredible perspective.

I can admit now that cancer does make me think about death. I realize that nothing is mine. I possess nothing. Everything I think I own will sooner or later belong to someone else: my house, my clothes, my truck, my banjo, my furniture. Some of these things already belonged to other people who are long since dead. It really is a circle of life and death, and in between we’re just borrowing time. Does it sound like I’m at peace with it? I’m not.

 

Round two

If there is a war, my enemy is side effects. The cancer is here. Who knows what the future holds for it? It might be gone, it might not. It might end up killing me. There are no reassurances so I’d rather focus my energy on lessening the  side effects, taking care of my mind, and taking care of my body.

Yesterday I had a pretty intense reaction to Taxotere during the chemo infusion. Amelia wrote about it right after it happened. At first I thought I was having a back spasm, but then I realized I was having a reaction to the chemo drugs. It felt like the bottom six inches of my spine were under immense pressure and it was going to explode – like that scene in Alien when the alien bursts out of the guy’s stomach.

I’m not so good at showing pain. I sit with it and don’t react too much vocally. Once again, it’s a time when something is really, really wrong and I get very still and silent (unlike when I accidentally hammer my finger and there’s a lot of yelling, pacing and swearing). You would not know anything was seriously wrong. In fact, Amelia didn’t even grasp the gravity of what was happening. So now I get to add another drug to my cocktail: hydrocortisone. Fortunately, the nurses took immediate action and within five minutes I was back into my Benadryl stupor. But goddamn that was some serious pain.

Clearly I can’t assume anything. What happened last round doesn’t equal what will happen this round or the next four rounds so I will hold my breath the next few days and hope for the best. It’s all I can do.

I can now see my mind and body’s reactions to what is happening throughout this process. From You have cancer to You will need a mastectomy to It’s in your lymph nodes to Chemo is not optional to Your hair will fall out to Hello, side effects, my body wants to squat on the floor with my head in my hands and take the duck and cover position in the corner. My mind wants to destroy everything in the room and throw things out the window. It’s 100% pure instinctual reaction. I know that I can’t get on either one of those trains. I need to see them, acknowledge them, and then watch them go by.

Hair today…

Only one week of a mohawk, darn it! Last night I had to shave the rest of my head. Too much hair was shedding and I don’t want to leave a DNA trail everywhere I go. When you go from a mohawk to a stubbly head it’s not nearly as fun. It was good to shave it in stages though; it gave me a chance to grieve. I was not a griever or a crier before cancer because I was always looking at the future and thinking about what’s going to happen next. Everyday my hair fell out was like seeing the future, and my future self is hairless.

I don’t just lose the hair on my head, I lose ALL of my hair. Important places that we take for granted like nose hair, ear hair, eyebrows and eyelashes. Nose hairs are filters for dirt, viruses, and bacterias. Ear hairs help you hear. Eyebrows move moisture away from your eyes and eyelashes are a protective barrier for your eyes. I’m going to lose it all, including the unmentionable pubes. Ha! I just mentioned them.

Hair falling out isn’t a gentle process. I thought it would just fall out without me noticing too much, but my scalp feels like a pony tail tied too tightly with a scalp sunburn. My hair follicles are inflamed as are the rest of my innards from the chemo.

A few weeks ago we were having lunch with Amelia’s parents and her Mom asked if I’d wear a scarf or a wig. “No way,” I said. “Hats only.” Then Amelia dropped the wig bomb on me. She said, “Why don’t you get a pompadour wig, you know, like an Elvis wig? Your insurance might cover a good one. You’d rock the balls outta that.”

WHAAAAT?! I never thought of that! Wait a second, I might get a wig because it could be FUN?! There was a lot of giggling. “A pompadour,” I said quietly, “a pompadour.”

We shall see….

Hair

So many feelings today. The hair loss has begun. Nothing says cancer like a bald head. It’s another stab from reality: this is really happening. I knew my hair would fall out, but I was still not prepared this morning when I ran my hand through my hair and came away with a handful. I actually laughed for a second, and then the tears came.

How could I possibly prepare for this? It’s incredibly unnatural. It is not a choice. In the past I chose to buzz cut my hair which was empowering. Now I am losing my hair because of a situation that I have no control of and it’s anything but empowering. It’s humiliating. I’m realizing that your identity gets systematically stripped away when you have cancer. I could welcome this on an existential level, but when it’s happening on the physical level, it is damaging to my psyche. I get inspected, poked, prodded, weighed, measured, asked about my bodily functions, lose my breast and now my hair. I had just started adjusting to not having a breast and now I have to navigate another layer of grief and sadness.

Is this the best that we can do? Kill every living cell in the body and hope that it will kill any free range cancer cells floating around? We can send people to the moon and we can’t treat cancer without destroying parts of ourselves?

Cancer is not a choice. It pisses me off that some people out there think, It’s just hair, it’ll grow back. Clearly, these people’s worlds haven’t been turned upside down by one awful word: Cancer. I envy them.

An interview with Leah and Amelia about Leah’s hair loss can be read here

Expectations

When the shit hits the fan in life – and I’m not talking about losing a job or a wrecking your car. I’m talking about serious, permanent life-changing shit – we have to prepare for the many expectations that come with our new lives and the huge disappointments that will get in our way. There are people that you assumed would be there who just disappear. And there are the people who you would have never thought would be right there in the trenches beside you.

At first I was judgmental and irritated about the bubble that most of us live in. What, you don’t know anything about cancer?! What’s wrong with you people? But, now I think, Why the hell would you want to get to know cancer unless you really had to? 

Expectations can’t exist in cancer time. I am at the mercy of my surroundings, my doctors, my infusions, my meds, my side effects, my tidal wave of emotions. I can’t assume anything now. With cancer, there is discomfort in not knowing what the future holds, even though before cancer I was okay with not knowing. I even thrived on it.

Leah before cancer was very unpredictable. I am difficult to keep up with. I don’t do schedules, I don’t do lists. I kind of fly by the seat of my pants and somehow get a lot of things done. You cannot slow me down and you cannot pin me down. Well, goddamn if cancer hasn’t stopped me and pinned me down.

Giving in to the unpredictable nature of cancer is going to be the hardest thing I ever do. It’s like getting into a car and letting a stranger drive me around at 100 mph – with no seat belts. We have to trust strangers with our lives when we have cancer. Trust is something that is usually built, but right now I have to blindly trust the people driving my car.

The Community and the Sisterhood

I don’t really like crowds, cliques, groups, or labels. I’ve never been interested in being cool, hanging out with the ‘right’ people, acting a certain way, or following what everyone else does. Image and status have never impressed me. I’ve usually avoided labeling myself because I’ve thought that the minute I put a label on myself as anything other than ‘person’ I’m alienating myself from so many other people. It sounds simple, but it’s hard to pull off. I don’t mean this in a pretentious, I’m-an-individual-and-I’m-so-unique-and-special kind of way, because you know what? We’re all goddamn unique and special, every single one of us.

I’m no more special now that I have cancer, but now I’m standing in a different place. Now I’m standing with the Community of Cancer, and the Sisterhood of Breast Cancer. We’re all here, spread out over the entire world. We’re all on our own paths of angst, confusion, anger, sadness, grief, and terror, but we’re not alone; all of our paths merge. I read other people’s stories and I feel the cancer connection that we share. It’s a pretty intense feeling. I will embrace this label because my life is now forever changed. We all hope that our cancer is temporary, but the changes in our lives are forever. We will never be the same, and that’s ok. As my surgeon put it so well, “When this is over, you won’t be the same Leah, but you won’t be Cancer Leah.”

I want to make sense out of it, to try to figure it out, but there’s nothing to figure out and I have to learn to give in to this tumble. Cancer levels the playing field for all of us. It takes away any sense of control we thought we had. Cancer demolishes walls and strips away the things that keep people separated whether it’s gender, money, age, religion, sexuality, or race. Here we all are, naked in a room together. With cancer. We are now equals. There is strength in numbers, even if we are unwell. Is this what it takes for us to feel connected?

The side effects

I was really hoping for minimal side effects to chemo, but hope is like playing Russian roulette when you have cancer, and the odds have been stacked high against me these past few weeks.

First, I have to take steroids the day before and the day after chemo. The day of chemo I get them through my port. They made me feel hellish, like I drank a pot of espresso with some speed mixed in. My thoughts raced and I flew off the handle at the littlest thing. Amelia says she hopes I get used to them before she kills me.

Mild nausea set in next. It was tolerable and manageable for two days. But four days out, my stomach felt like it was on fire every time I drank or ate. Then pulsating pains started throughout my body. Then feeling unstable and shaky. Then diarrhea. Then heartburn. Then my eyes start to burn. To top it off I have a serious outcrop of pimples on my face and neck.

Cancer kind of forces you to be hyper aware of your body, and that’s really bad at a time like this because now I get to feel my body being destroyed on a cellular level. The thought that keeps popping in my head is Poison the body to save the body. This is the first course of six; I have five more to go. Chemo has a cumulative effect. Things are going to get much, much worse before they get better, not that I’m exactly sure what worse and better look like. Cancer is beginning to splinter and scatter me. Maybe that means I get to choose what parts of me I pick back up when it’s over.

The other war

Each person with cancer or any other illness has their own individual set of strategies. We can call it anything we want: war, journey, battle, pit stop, path, detour. Our illnesses are our little unwelcome pets; we get to name them and treat them however we want. There is no wrong approach. We do what’s right for ourselves because in the end we want to feel better by whatever means necessary. No matter what we call it, we know this: we want our bodies to win.

The United States seems to be moving backwards right now. There are so many other wars raging: racial, social, basic civil rights. The list goes on. The war that’s pushing my buttons is the war on women. Right now, yesterday, and since the beginning of time, a small group of men (and some misguided women) have been trying to regulate our bodies. In 2014, there were approximately 500 restrictions introduced by state legislators intended to limit, control, or otherwise regulate women’s reproductive rights. Our bodies are getting talked about behind closed doors – and publicly – by Congress, the House, the Senate, the White House. Our vaginas are being discussed in legal terms. By the way, in 2014 there were no comparable bills introduced to regulate men’s reproductive health care. Zero. Zip. Nada.

Clearly, women are just baby making machines. We are nothing more than a womb to these people. They’re trying to pass more and more laws about what we can and cannot do with our vaginas and uteruses. They are encroaching deeper and deeper into our personal territory. When will they start legislating our breasts? Oh, you want regular mammograms? We decided we’re not going to pay for them until you’re 50. What’s that, your breast has cancer in it? No, you can’t have it removed; It’s against our new breast laws. Breasts first! What’s to stop these politicians from creeping 12 inches up our bodies? Women make 70% of what men do, politicians keep trying to re-define the word rape, aid is cut to low-income mothers, the life of a fetus is put before the life of the mother. What’s to say our breasts aren’t next?

I’m not sure who I’m more pissed at, the politicians or the people who vote for them. They keep working to take away my rights away year after year, bill after ridiculous bill. Billions of taxpayers dollars get spent to regulate things like a woman’s reproductive rights, gay marriage, and immigration, and we can’t cure cancer or eradicate the common cold. Good job, America, good job.

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.

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.