Still struggling with cancer

Cancer – and the aftermath of cancer – doesn’t go away. I may look better and feel better than I did last year, but cancer is with me every single day and my body is still struggling. I’ve never operated at less than 120% physically, and now I’m at a permanent 70-80%. It’s depressing. I have to think about every movement my left arm makes: can’t have it below my heart too long, can’t have anything restrict it, can’t have it above my head, must be aware of restrictions even though I can’t feel most of it since it’s numb, can’t sleep on the left side, must remember to wear compression sleeve, can’t lift heavy objects (what is considered a heavy object?) The list goes on and on. Who doesn’t take their body, their limbs for granted? Why would we ever worry about not lifting, not walking?

People have compared my cancer to breaking a bone, appendicitis, getting the flu, or getting stitches. They’re somehow trying to relate to what’s happening for me. But you typically recover from those things and you usually never need to think about them again. Twenty percent of my body is disabled. Forever. I don’t wake up and ever feel 100%. This wasn’t a skin tag removal so please don’t compare cancer to everyday maladies.

The damage is physical and, I hate admitting this, but it is psychological as well. There is definitely some PTSD  going on here. Giant waves of paranoia, fear, and helplessness crash over me multiple times a day and drag me into a black hole. And I’m hard on myself about it. I tell myself to get over it, that I’m being pathetic, that it’s not so bad, that I’m just feeling sorry for myself, or this very ugly one: that somehow I deserved this. I am horribly mean to Leah.

Coming to terms with cancer is going to be a lifelong journey and it’s a crappy, crappy road. I keep searching for a silver lining that doesn’t exist. I suck at ‘living every day to its fullest.’ I am not a grass-is-greener-bright-side kind of girl; that will never be who I am. I am a Reality Girl driven by half facts and half dreams.

The amount of cancer related appointments I continue to go to is never ending. In the last two months I’ve had visits to my oncologist, radiology oncologist, gynecology oncologist (more on that in another post), physical therapist, general surgeon, and breast surgeon. There are reminders on the calendar screaming at me that cancer is in the room, every day, every week.

None of my doctors has declared me “cancer free.” They say, “We certainly hope you’re cancer free, but with HER2 receptors and lymph node involvement we can’t say for certain.” With each new ache or pain I stop and ask myself, am I ok? Is the cancer back? Has it metastasized? When should I worry about a new symptom? My radiation oncologist says I should worry if something increasingly worsens or is persistent. His words become my mantra when I have a pain, ache, or visual changes.

Writing feels like therapy for me. If I spew it out without holding back, with no filter, no end or beginning, no thought of where I’m going, maybe it will be easier to walk into the black hole of the future and away from the black hole of the past.

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What The Hell Just Happened?

Suddenly a year has gone by and the thought that keeps popping up in my mind is, “What the hell just happened?” Last year cancer kicked me off off a cliff. I am still climbing back up that cliff, but is that what I’m supposed be doing?

The urge to run away has been extremely strong. It’s a very foreign feeling to me because I consider myself an expert at hunkering down and riding things out, but lately I find myself looking at jobs far away and wanting to just leave, to be anywhere but here. This is what my anxiety feels like. I have to stop in these moments and let it sink in – this is anxiety and it’s not going anywhere; it’s a part of me now. That doesn’t mean I have to follow the anxiety or run from it. But like anything else in life, I have to understand it before I can deal with it.

I am restless and getting nowhere because I am running in place. We all seem to be running; towards something, away from something, or running to run to something else. We’re hurrying along separately together and all the while a clock is quietly tick-tocking. There is no destination, no prize, but we don’t stop, we can’t stop. It’s a compulsion, gotta keep moving, moving, moving…

Maybe I just need to sit. To see the train, acknowledge the train, but not get on the train. Maybe I need to watch the train go by. Sometimes what you think you should do and what you actually should do are not the same thing.

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.

 

 

 

 

A little depressing post

I am in a crosshair. It’s the place where everything is different, yet everything is exactly the same. I’m just beyond looking like I have cancer, but right under the surface is a ten-inch scar. My very short hair could be seen as a choice at this point.

People see what they want to see. They see that I am working, and that my hair is growing, so therefore I am fine. Nothing is usually what it seems, no matter what the surface looks like.

But I’m working too much, too hard. It is a constant work that is unfortunately unavoidable right now. I don’t mind working hard. It’s usually very good for me to stay busy physically, but it is wearing me down now.

I am not the same person I was nine months ago physically. Cancer has kicked my ass over and over and over. My body doesn’t recover the way it used to from a strenuous day. It feels like it doesn’t recover at all. I am tired, very tired.

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.

 

 

Date night

Amelia and I had our first real dinner date in five months last week. Bad chemo (taxotere and carbolplatin) is over, my taste buds are almost 100% back, my liver numbers are at a healthy level, and I’m no longer neutropenic. I may be bald and a little fatigued, but it was an occasion to celebrate.

We recognized one of the waitstaff. She knew I had cancer and shared with us that she had breast cancer a few years ago and was just beginning to feel normal again. We talked about holding back the urge to talk to, ask questions of, and hug other women with cancer that we see out and about, but also not knowing where these women are in their process, not wanting to intrude and assume they wanted to talk about cancer at all. It was an amazingly genuine exchange.

I keep asking myself, Why do I see cancer everywhere now? And Amelia reminds me that cancer has always been everywhere; it’s my lens that has changed. I now experience cancer through strangers and friends alike because we’re in the Cancer Club.  None of us usually walk up to strangers and start talking about our cancer – unless we know that person has also dealt with cancer.

It’s not as easy as Gay-dar, which is walking into a room and usually knowing immediately who’s gay. Cancer is harder to identify unless someone is in the throes of treatment with a bald head or a donning a bag of chemo. It’s as though we are coming out to each other in whispers, I have cancer, I had cancer, my wife had cancer, I’m a survivor, I’m three years out, I’m a lifer, I’m Stage 2, I’m triple negative.

As Amelia and I were leaving, I paused near the door. I felt I needed to give our waitress a hug. I turned around, and she was standing there, waiting for me. A connection through cancer with a stranger is a powerful thing.

 

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?

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.

First times

There are a lot of “firsts” after something as life-changing as a mastectomy.

Two days after surgery, I left the house for the first time. It was a production: getting in the truck, figuring out how to buckle in, bracing for the bumps and potholes in the road. But it was a success and I also had my first beer, a Southern Tier Pumpking, my favorite fall beer (yes, I am one of those people who loves pumpkin beer, thank you very much). Amelia drove us to a friend’s lake house and we sat on the dock for two hours on a beautiful fall day. Cayuga Lake feels like the ocean sometimes; there are areas where you can’t see where land begins again. Feeling small could be regarded as a bad thing, but this kind of feeling small is fantastic. I am so minuscule in comparison to the lake that my perceptions of difficulty or problems become just as tiny. Even if it’s only for two hours, it’s a relief.

Day three I went for a walk around the neighborhood with Amelia. It was a production as well, and included tying my shoes and pinning my drainage bulbs out of sight (now referred to as “my balls”). I was markedly slower, but it felt great to walk. I do love fall. I had a great deal of trepidation because I didn’t want to see anyone. “How are you” isn’t working for me right now. I’m already brutally honest so my response very well might be, “Other than having a body part amputated, I’m ok. Thanks.”

Day three I also saw friends for the first time. This is more of an emotional production since every person affects me in a different way. Around some people I’m acutely aware of myself physically; around others I’m more aware of myself emotionally. There are those I have to protect myself from so they don’t drain me. There are those who require all of my awareness be about them. There are those I feel whole around.

Day three was a big day of firsts: We also removed the bandage and I saw my chest for the first time. I don’t think any other first can be as hard as that one. I wrote about it in detail already.

Day four I tried on one of my shirts. It was incredibly unnerving and disorienting to see how it fits me now.

Day six was my first day alone. It was very dreary and I couldn’t help but think about the people who have been or are alone right now as they try to heal. Damn, I don’t want to be someone who overuses words like ‘grateful’ and ‘thankful,’ but I do feel thankful.

Day seven was my first hike. Amelia and I walked into Taughannock Falls. This walk was different than going around the neighborhood where we basically see no one. I had to pass many people on the trail. People who hike are perky people. They nearly always want to make eye contact and say hello. Ugh. Hi, I’m Leah…See my dangly balls and my one big boob?

Day eight was my first trip to Ithaca. One word – Wegman’s. We shopped and managed to not see anyone we knew. Success! It’s not that I’m avoiding people, by the way. It’s that people now see me as an illness instead of a person. I Am Cancer.

Balance and strength

September 29, 2015

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

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

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

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

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

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