Breaking up is hard to do (not really)

My oncologist has kept me alive. The past nine months have been the hardest months of my life and I’m glad she was there to guide me through some of it. But it’s time to move on.

I think she now sees me as a one of those “bad” patients. A patient with the audacity to question a doctor. I’m not questioning her, I just have questions, and sometimes there are no answers. She is an expert on cancer and I have nothing but respect for her knowledge, but I am an expert in me. I think a lot of doctors tend to forget this with their patients.

She asks questions about my health and then dismisses anything I report because it’s not life-threatening. Bloody nose? She tells me that the cancer isn’t in my brain and I should go see an ENT if it doesn’t stop. Eyelids swell? She says there is no cancer in my eyes and that it’s not like I’m going to die from puffy eyes. Joints are swollen? She says they’re not, even when I show her my rings don’t fit. I want to get blood work because I’ve been more fatigued? She refuses to order it because I was only “a little bit anemic” five months ago (!) when she last checked my blood counts. Left hand has pins and needles? She say it’s probably my spine, then she tells me I don’t have cancer in my spine. I never thought I had cancer in my spine, or my brain, or my eyes, but thanks, now the thoughts nag me. I still have all these side effects with no explanations.

She asks questions, but doesn’t really listen. and I can’t have a doctor that doesn’t listen, who’s only in it during the shit storm and then disappears when it gets real and perhaps boring for her.

Every question I ask seems to rub her the wrong way, as if I’m challenging her. I’ve said over an over that I am an investigator, a researcher. I read. I search. I want to learn. She says I should just stop worrying.

Six months ago she sent me off to get a mammogram because she was convinced there was a lump at my mastectomy scar. (No one EVER wants to hear that cancer is growing while actively getting chemo.) Turns out it was just scar tissue. I can’t help but think that if I reported having any of my current side effects six months ago she would have taken them more seriously. Now that I’m out of the woods, my side effects are suddenly meaningless to her.

The fact is thousands of women have the side effects I’m having. If she told me just once that, yes, she’s heard other women having some of these side effects, I’d feel a little better. But not once has she said it. I just don’t get it.

This isn’t technically a breakup because it’s a business relationship that we have. Well, if her business is saving my life, then I no longer need her services. Thanks. Looks like I’m going to live. But I’m not done with treatment, so I need a new doctor, one who sees her or his business as helping me to live as a whole person and not just as a patient whose life needs to be saved.

End result? I’m switching doctors. I’ll be finishing my treatment at our dinky sweet friendly small town oncology office, where I’m not just a number and not just a life to be saved, but a whole person. Let’s see how that goes.

 

 

 

 

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Versions of myself

I normally thrive when I’m in a perpetual state of movement. But cancer forced me to stop moving, and change still happened. That is something I need to remember: change doesn’t require movement; some of the most important growth comes from stillness. I’ve blasted through so many different versions of myself these past eight months it’s hard to keep track of. Life has whirled by with such intensity that I haven’t had a chance to get to know each of these separate incarnations of myself.

Pre-cancer Leah is just a speck in the rearview mirror at this point, and I’m not sure how much I relate to her anymore. Who was I?

Diagnosis Leah wanted to run and never come back. I was full of anxiety and fear of the words ‘invasive cancer.’ Those feelings were foreign and confusing to me at the time. I am beginning to understand and accept them more now.

Mastectomy Leah was overflowing with an intensity of pain and grief that I have never experienced before. There will be a lifetime of feelings and learning in the aftermath for me and I will embrace every second of it.

Chemo Leah got the shit kicked out of her every three weeks for 18 weeks. Just when I started to feel better, chemo climbed back into the ring to knock me out again. I can fight a lot of things off, but I am no match for chemo. It’s something I hope I never have to go through again. There really are no words to describe how bad chemo is.

Radiation Leah thought all the hard stuff was over. Wrong! So many feelings popped up while lying on that table ten minutes a day for six weeks. Cancer was here, in the room with me day in, day out. And questions kept popping up. Will I ever feel normal again? What is normal? Is the cancer gone?  Will I lose my right breast? How much radiation is really hitting my heart?

Now here I am: Recovery Leah. I feel like I’ve lived an entire lifetime the past eight months, someone else’s life. But it’s mine. Who is Recovery Leah? I’m still figuring that one out and I will be for the rest of my life.

 

 

Cancer is not a battle – for me

Cancer isn’t a fight for me. I’m not battling anything. It’s not a competition, there is no trophy to take home, and really, do we call people who die from cancer ‘losers?’ No, we don’t.

I am not being courageous. I am just a woman dealing with a curve ball thrown at my life. This is temporary. Everything we think we own or have is temporary. I am one of over 13 million people who found out they have some form of cancer last year. 232,000 women were diagnosed with invasive breast cancer and 60,000 with non-invasive DCIS, and that’s just in the United States. Those are big numbers. These numbers tell me that I am not alone. I am now connected to every single person with cancer. I recognize their sadness, struggle, and confusion as if it was my own.

There is a very intense and deep sadness that I have experienced with my cancer. My sadness doesn’t go away. It doesn’t stop me from doing anything, or make me wallow, and you wouldn’t know it was there by talking to me. It’s difficult to put put into words. I don’t speak it or wear it, I feel it.

There is no right or wrong way for anyone to deal with cancer. It’s a very personal journey and anything goes. How I handle it is right for me, and I try not to judge anyone else’s choices. I say ‘try’ because I am far from perfect and yeah, I judge people for what I think are bad decisions. Like my friend who thought he could make melanoma go away by doing coffee enemas and getting his tonsils taken out. He died within months and I was pissed for a long time about it. I write this and realize that I’m still pissed. But it wasn’t my life, and he did what was right for him. Like I am doing what is right for me.

 

 

Radiation

I met with a radiation oncologist in Rochester on Wednesday and she recommended I get radiation five days a week for six and a half weeks.

Every doctor so far has said the same thing to me, “You’re too young for this.” This doctor was no different. Her reasoning for radiation was solid: I’m young, my cancer was multi focal (which means I had multiple tiny tumors throughout the breast tissue), I’m estrogen negative, there was lymphovascular invasion, and the cancer is high grade.

My struggle and hesitation to get radiation is mainly about one thing: the risk of lymphedema in my arm. I feel like I’ve dealt with cancer, mastectomy, and chemo pretty goddamn well. I have adapted as new things have come up. But limit the use of my arm, and it may push me over the edge. It could very well tip the scales a little too much towards darkness and depression. Could I adapt to limited use of an arm? Of course, this is what we all do, adapt to our environments. This is how we survive and evolve on the most primitive level as a species.

But this could be a difficult adjustment for me. I have already been experiencing mild swelling in my wrist and hand these last few weeks. Radiation will further compromise my already compromised lymph nodes. It will scar and damage the remaining healthy lymph nodes it comes in contact with which could limit the flow of lymphatic fluid and increases the risk of more swelling.

There are things that I am doing to manage the swelling: wearing a compression sleeve and gauntlet, holding my arm above my heart several times a day, lymphatic self-massage, and physical therapy which I will start after chemo is over.

It comes down to the word “limit.” I don’t like that word. I don’t like the implications. I don’t like the sense of not having any control. Not that I truly have control over anything. Maybe this is what my struggle is about – letting go of control and accepting my limits.

 

Knock, knock. Who’s there? Cancer.

No one is exempt from cancer:  toddler, grandparent, serial killer, neighbor, asshole, rock star, plumber, homeless person, new parent, cop, cashier. I am not exempt. You are not exempt. Cancer is like a monster creeping around the house, waiting to scare the bejesus out of you when you least expect it and then refusing to leave like an uninvited house guest.

The number of people I know who have or used have cancer seems to be increasing by the month. Off the top of my head I just counted 12 people. It’s becoming a common occurrence. We can chock it up to so many things and debate causes and treatments, but one thing is for certain; cancer isn’t going away anytime soon.

Me getting cancer is now what I call a direct hit. It’s one of those things that you truly do not understand until it happens to you. For me a direct hit is something that happens to myself or Amelia, someone who I live with and see every single day of my life. I love my close friends and family, but when something bad happens to them, it’s a little more of an indirect hit. At least it was prior to my diagnosis. Now it’s different. When even an acquaintance gets diagnosed with cancer, I feel like my heart is taking a direct hit. Now I understand. Now I get it.

 

 

 

Creativity and cancer

I have epiphanies all the time. Most days I have at least one exclamation of, “I have an idea!” or “I need to….”  This morning’s epiphany was pretty simple, but quite loud, actually it was booming so I paid close attention. It was this: I need to get better at the things I am already good at. I need to immerse myself in three of my favorite things: woodworking, cooking, and music.

Each of these three activities feeds me in a different way, but the one thing that ties them together is creativity, which is a daily requirement in my life. My daily dose of vitamin C.

Time moves differently with cancer. The glaring fact that we are all time-limited is magnified. Mortality is real and sometimes there is no rhyme or reason to when you die and how you die. But the fact remains: we’re all going to die. So how do I want to spend my time? I want to be in a constant state of learning and sharing what I’ve learned. Leisure time really isn’t for me; it never has been. Most people’s bucket lists include traveling somewhere exotic and drinking expensive champagne. This week I want to master a hand-cut dovetail joint, learn Japanese scales, and make miso from scratch. This week. Next week, something new.

My morning epiphany wouldn’t have come on so strongly had it not been for cancer. Am I starting to appreciate the role cancer is playing in my life??? I’m not sure. But I do know that I’m listening more closely to everything now.

 

My relationship with cancer

Lucky doesn’t begin to describe how I feel about my relationship with Amelia. We’ve been together for 20 years. We met at a yoga center where I was working, and Amelia – who was a vegetarian, non-drinking straight woman – was “finding herself.” I’ve always said that one day she was touching her toes, and then she found me, meat, and bourbon. -Insert my laughter here-

We’ve survived something most couples don’t: Owning restaurant business together. Having a business together catapulted our relationship to a whole new level. It took a while to navigate, but we’re awesome at it. We are a machine. (Here’s a tip for any of you who wonder if you could do the same: You both need to excel at different things and you need to accept those strengths and not be a pissy-pant because you think the other person has it easy. Trust me, no one has it easy. And you can’t be a control freak.)

So now here Amelia and I are dealing with cancer. Cancer is the most self-centered thing that has ever happened to me. It’s all about me and my cancer most of the time. But in reality, it’s not just about me. It’s also about Amelia, my caregiver, my Love. Sharing your relationship with cancer sucks. It is a physical and emotional strain day in and day out. It doesn’t go away. We don’t forget about it. It’s not like just having a bad day. This is forever.

I won’t go too much into the details of HER2 positive breast cancer, but there is a chance the cancer will show up again in my lifetime either at the same site (local recurrence) or a metastasis (a distant recurrence). The longer it takes to come back, the better because maybe there will be a better treatment developed in the coming years.

Then again, the cancer may never come back. It could be completely gone and we may never have to go through this again. That what I believe 80% of the time, but when I’m in the 20% place I’m obsessive and gloomy. It’s not a good place. I think over time that 80% optimism will increase until, as one good friend of mine put it, one day I will go through a whole day without thinking about cancer, my mastectomy, or chemo.

I know this: if the cancer does recur, Amelia and I will deal with it, and it will be hard. But our love transcends time, difficulty, grief, and everything in between. Love is my motivation.

 

 

Can I work while I’m getting chemo?

This week I decided that I needed to push myself a little after my chemotherapy treatment. I know, I know, what the hell was I thinking? But I wanted to get dressed, leave the house, and work, even if only for an hour or two a day. I assumed that because my doses were lowered by 20%, I’d feel 20% better. I was wrong. I still felt like crap, actually more nauseous than ever.

I’m realizing more and more that I am a closet optimist (don’t tell anyone), though it’s not that I necessarily come off as a pessimist to others. I feel like pessimism is based on the past – It will suck now because it sucked before – and I see optimism as blindly relying on the future: Gee, Wally, it’ll be great, won’t it? I consider myself more of a realist. I spend most of my time in the present. I like it here.

There is a mind-over-matter component in dealing with cancer that I didn’t expect to find. Chemo kicks my ass in, make no mistake: I am a bag of poisoned flesh. But I managed to get some serious physical work done this week at the new building simply by telling myself to do it: Eight hours of work the day after chemo, laying subfloor in the kitchen for tile (thanks, steroids), and two hours on each of the following three days putting up sheetrock, repairing plumbing, changing out a light fixture, installing an outdoor spigot, demolishing an old fence, and loading the truck for a dump run. The closet optimism paid off. This doesn’t mean I’ll be building a house (at least not this week), but I can work. I can feel like crap and get something done, just at a slower pace, and that’s ok. Movement is life.

 

 

 

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.

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.

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.

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?

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.

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.