Karla

When you get diagnosed with cancer, you meet a lot of other people who have or had cancer. It’s like another family, and we are all connected through our struggles, through our mortality, through our fears, through our perseverance, through the change and uncertainty that cancer brings.

For many people, cancer is a one-time diagnosis. They get treated and it doesn’t recur or metastasize. Others start off with a stage 4 diagnosis, or have a lump removed and then months or years later find it’s spread to an organ.

Sooner or later we lose someone to cancer from this new family. When one of these new family members dies, it’s a loss for all of us.

Karla was one of my radiation techs that I saw every day for six weeks. She was a breast cancer survivor and a constant reassurance on radiation days. She had the bedside manner that you wanted next to you when you were in that very vulnerable position on the radiation bed. She was comforting, smart, and sensitive. Your cancer treatment team isn’t there to be ‘best buds’ with you and there are only a few people during my treatment that I could say I truly connected with beyond the patient-caregiver relationship. Karla was one of them.

I saw a lot of robotic doctors and nurses while I was sick, people who say mmm hmmmm mmm hmmmm without really listening. Karla was real. She was transparent. She had compassion and a deeper understanding of exactly what I was going through because she had been down that path. She saw herself in me. I saw myself in her.

When I went back to my radiation oncologist for my six month check up, Karla was gone. She had died the week before from cancer that had come back with a vengeance. When the nurse told me all that would come out of my mouth was “No!” and “Why??” and “I don’t understand.” I couldn’t wrap my mind around the fact that the Karla I knew had died from her cancer. The grief I felt as I drove away from the hospital was overwhelming.

I didn’t know Karla well, but it was like I knew a part of her well. Sometimes there is something that connects us to someone else that is indescribable. I was in the middle of treatment, so I don’t remember the things we talked about or the things she told me. When the radiation nurse told me that Karla had died, I couldn’t remember the details Karla had shared with me about her own life. I felt guilty about that, and selfish. And betrayed: by the lack of details in my memory of her, by life, by death.

Only a few weeks passed between Karla’s cancer relapse and her death. I knew Karla had dogs, not children. I knew she was smart, compassionate, and present. I knew she was sad when she talked about cancer, whether it was mine or hers or someone else’s cancer. I knew she had a husband that she loved who loved her supported her. When I visited her obituary page, I saw how many other people loved her, too, like I did.

We’re all so caught up in our own lives, and in the what ifs. I was just trying to get through treatment, and Karla was there for me. I looked forward to seeing her every day. For all I know she had already been diagnosed with Stage 4 cancer. I never considered asking. I thought she would always be there.

Make no mistake

If I could choose to do one thing and actually make a living at it, it would be woodworking. I love wood. I love creating, making mistakes, fixing my mistakes. The whole process is something that I am in love with. It’s like a meditation. Just me and tools and wood for hours.

It took a long time to love making mistakes. When I first started woodworking 15 years ago, I would get upset and beat myself up for days when I made a mistake. I would abandon projects that I screwed up. Scattered around the house and in my shop were my wood orphans: table tops with no legs, table bases with no tops, cutting boards that needed planing, cabinets with no doors, warped cabinet doors. It was like the Isle of Misfit Furniture. But slowly I started figuring out that nothing is a mistake with woodworking. Wood is easily repaired and my mistakes are opportunities to learn how to build better. I actually look forward to screwing something up now; it means that I am still learning.

I always seem to be in the right place at the right time for free lumber. Several times I have been offered to rummage the contents of old barns containing treasures of dusty planks, splintery huge beams, and sections of trees. It’s like opening presents when I get home with a load of wood. I never know what I have until I cut or plane a board and find something amazing like tiger maple, red cedar, crazy grain patterns (which I love). Or four-inch thick boards I thought were pine turn out to be walnut. Score!

This week was the first time in 12 months that I stepped foot in my shop to work on furniture. I’m building a six-foot mahogany bar top and a large hutch from pre-used wood and local fallen trees that I milled. Time stops when I’m creating. I immerse fully and there are no thoughts of anything other than what it is that I am working on. Being 100% in the moment sounds so simple, but in the whirlwind of life I don’t find myself there near enough.

I forgot how good this feels.

 

 

 

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.

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.

 

 

Letting go

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Tomorrow Amelia and I have to let go of our dog of 15 years. It’s time. I’ve been avoiding and dodging this moment for a while. I hate that we have to arrange his death, that tomorrow someone is coming to our house to euthanize him. To kill him.

I’ve not dealt well with his aging, with his mortality. It’s a mirror: he’s going down a road we all will go down someday.

When he blew out his rear knee, I couldn’t let him go.

When he blew out his other rear knee, I couldn’t let him go.

When he started shaking in fear while riding in the car (once a favorite pastime),  I couldn’t let him go.

When he started losing his memory, I couldn’t let him go.

When he started isolating, I couldn’t let him go.

When he started compulsively pacing in the house, I couldn’t let him go.

When he started to get confused which door he went in and out of, I couldn’t let him go.

When he started to get so weak that sometimes I had to help him up, I couldn’t let him go.

When he started pooping on his bed and sleeping on the poop, I couldn’t let him go.

When it became clear he had dementia, I couldn’t let him go.

When I started getting mad at him for being confused and scared, I couldn’t let him go.

When I started resenting him for getting old and frail, I couldn’t let him go.

When I stopped paying much attention to him because he was vacant, I couldn’t let him go.

Last week we gave him a bath together, something Amelia usually does alone, but because he is so weak I had to hold his rear legs up so he didn’t fall over. Seeing him wet was heart breaking and disturbing. There’s nothing left of him. He is bones dipped in fur, his hips and rib cage protruding like a starving animal, all muscle tone gone. There he was wet and confused, literally looking like a shell of what he once was. I had to let him go.

He was the best dog we could ever have. He travelled thousands of miles, hiked hundreds of trails, camped dozens of times, kayaked with us in many lakes in the Adirondacks, slept under trees in the pouring rain, slept on a king size bed at hotels. He didn’t have an aggressive bone in his body.

Death has always been a big question mark for me, and cancer has made that question mark bigger. So tomorrow his life will end. And what is the end of a life? A sunset? A transition? Darkness? Lightness? Re-birth? Nothing?

I don’t know, but I know that I will miss my dog. I will miss what he was, not what he is leaving as.

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It’s ok to stare

I have one breast. A single large D-cup breast. This is not something you see every day, if ever.

The other day I noticed a lot of people staring at my chest. At what wasn’t there. I wondered when is it too much? When is staring invasive and rude? Where is the line?

Maybe there is no line. Maybe there’s nothing wrong with staring at something you don’t understand. Maybe that’s how we try to make sense of things we see.

Yes, sometimes I feel self conscious, embarrassed, and exposed. But people shouldn’t have to act as if it’s common and something seen every day, because it’s not. Having only one breast is not normal. There is extreme pressure for women to look a certain way, and when we go against that grain it is glaringly obvious. I made a decision that I’m 100% comfortable with but that doesn’t mean I don’t have feelings about it, too. Big feelings.

I have never seen another woman with one breast, but I know they’re out there. I know I’m not the only one. There is some comfort in knowing that I am not blazing some new path here. I am on a similar path as many, many women before me who don’t hide that they have one breast, even if I have never seen them or met them.

So it’s ok to stare. It’s ok to double take. It’s ok to be confused. It’s ok to wonder why someone has one breast. It’s not rude to stare. Stare if you need to stare, take it in, and learn something from it. Ask questions if you want to. Don’t be ashamed to look. It’s ok.

 

How do you think I feel?

I hate this. I hate radiation. Every day, five days a week, I lay on a table for fifteen minutes and think about having cancer. And every day, I’m flooded with emotions. I am sad. 

How do I know this is going to keep the cancer from coming back? How do I know that it’s not already in my liver? In my brain? In my lymph nodes? As long as I have to have daily radiation, I’m reminded of all of my fears. 

We opened our new business this week, a restaurant and bakery. So many people are coming in. I don’t know all of them, but they know me, and they know I am being treated for cancer. They know Amelia and I because we owned a bar until recently, and many of them have also been following my blog. My hair is growing back a little, but it’s still obvious that I had chemo. I feel exposed. 

All of the above was written by Amelia. I wanted to know what she thought I was feeling so she wrote it from my perspective. She knows me well enough to be able to write as me. Almost.

I don’t hate radiation, but hate is a word I carelessly use. At my core I just don’t believe in hate.

Radiation sucks. I don’t like it, and yes I think about cancer while I lie on that table listening to some sappy soft rock song piped in. Today it was Time After Time, Tuesday it was Just Breathe, Monday it was Landslide.  -sigh-

Cancer has brought out the sadness in me. I have known sadness too well in my life. Right now, cancer is about loss: body part, hair, any sense of control. Loss, left unchecked, can sometimes turn into sadness, but not always. (I lost my credit card the other day – I was not sad. Pissed off? Yes.)

Yes, I think about cancer recurrence. Aches and pains have a whole new meaning to me now. My neck hurts. Is it in my lymph nodes? My ribs are sore. Is it in my bones? I see a bright spot in my vision. Is it in my brain? Then I forget about it, because we’re busy starting a new business.

There’s yet another level of feelings about cancer when you’re opening a restaurant. We are already fairly well-known in our community, and I’ve been very public about cancer. There are a lot of people that I don’t know who are genuinely concerned about my well-being, asking questions – just being really real and it hits me hard sometimes. I found myself in the restaurant kitchen with tears in my eyes a few times this week. The caring was too much. It shined a light on me that I am not quite ready for.

I feel like I was partially erased during the past seven months. I disappeared from the public view, and now I’m back. And it’s different. I’m different. This is what starting over feels like.

 

 

 

 

I’ve been nuked

Every road I go down in the cancer journey seems to lead to increased vulnerability. I sit in rooms half-naked and get poked, prodded, weighed, and measured by dozens of strangers. There is a blind reliance on strangers that didn’t exist six months ago that I will never get used to. At some point in each appointment I have to disconnect. There is only so much information I can absorb in one sitting. Thankfully Amelia is at these appointments to pick up my slack.

Radiation has brought up a lot of emotions that I did not expect. I feel uneasy, exposed, and overwhelmed. Just when I think I’ve got my emotions around cancer cataloged and organized into tidy little volumes, some brand new situation surfaces and feelings bubbles up. I simply refuse to ignore my feelings. It does no good for me, and it certainly doesn’t make anything go away. I’d rather ride out the emotions that come with the territory, there’s far more for me to learn on that path than one of of blissful ignorance.

Radiation is some serious shit. A physicist is now part of my treatment team. Beams of radiation blast my chest wall, collar bone, and lymph nodes, annihilating any rogue cancer cells that happen to be hanging around. The mission of radiation is destruction and/or interruption of fast growing cells. I will most likely have a skin reaction. It may look like a burn, but it will not technically be a burn. With burns, damage occurs from the top down through the skin layers. Heat burns more layers with each degree and eventually blisters. Radiation works differently. It damages skin from the bottom up: damaged basal cells (cells below your skin layers) move upwards to the surface of the skin and ulcerate. It is not a burn, and does not act or heal like a burn even though it looks like one. But it all sounds a little creepy if you ask me.

For the next six weeks every week day I will lay topless, hands over my head, taking deep breaths and holding them three separate times for 45 seconds while I receive radiation doses. I take a deep breath to pull my heart away from the radiation beam as much as possible. This treatment will have a whole new healing process that can take two years to recover from physically. The radiation oncologist said two to three years, but I’ll take two, thank you very much.

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.

 

Just say yes to research studies

I will participate in any research study thrown at me. I feel like it’s my duty to give back in any way I can. I think about all the people who’ve participated before me in these studies and in doing so have made my navigation through cancer easier. I will pay it forward.

The first research study I was involved with was about using visualization to help control nausea in people receiving chemo. It was very much like meditation. I was given an mp3 player with a recorded visualization excercise that I would listen to once a day for three weeks – if I wanted to. I also filled out a few forms describing the daily level of nausea I had and what I did to counter it or prevent it.

The visualization study was very loose. It was based on suggestibility. They suggested I listen to the recording at least once and that was it, but it was made abundantly clear that it was just that – a suggestion. I could listen to the recording one time or every day, or do my own version of meditation, I could try ginger tea, or take the prescribed meds. I like that this study was about the power of suggestion: it planted a seed in your mind and they monitored what happened even when the subjects forget about it.

I’m involved with another study now. This one is inspired by the effects of led lights on improved hair growth in male pattern baldness. The researchers are now studying women with breast cancer who’ve lost their hair to chemo to see if it will have the same results.

This time I get a helmet with hundreds of tiny red led lights that I wear on my head every other day for 25 minutes. It’s really quite a sight, Amelia is calling me Elroy Jetson.

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Deal with it

One Valentine’s Day I framed a quote that Amelia and I love: Maybe everything is already ok. It’s a good one, and true most of the time, but it’s work. It’s not putting your head in the sand or plugging your ears. It’s meeting things head on, acknowledging them, understanding them, and moving on.

Acknowledging the past is an important part of healing from any kind of trauma. I’m not one to put on a happy face on and skip through life with one breast exclaiming, “Everything is great!” No. Now that chemo is behind me I will dig deep into my feelings about losing a body part, an amputation.

When I look back at other traumatizing things that have happened in my life (and there have been a lot – I could write another dozen blogs), I am grateful. I wouldn’t be where I am in this world without these traumas because I chose to grow through them and in spite of them. I will grow through cancer and my mastectomy as well, but not without some work. Not dealing with the emotions of my mastectomy is like emotional suicide. If I ignore it, it doesn’t go away.

All these questions and feelings have started popping up about walking around with one breast:  Am I really going to march around in a tank top publicly when it gets warm? What do I wear when I swim? Who the hell cares? How do I support the left one? I need to design my own uni-boob bra! I’d say about 80% of me doesn’t give a hoot about how I look publicly; I’m just glad to be alive. But 20% of me is insecure and full of shame and way too concerned about what others see.

There are options, I’m just not interested in them. Like “foobs,” that is, fake boobs, the inserts you put into your bra. Or reconstruction, which I opted to not do. These are very personal choices and there are no right answers. Dealing with what I now have works best for me, learning to accept my body in its most natural state, even though there is less of it now. Maybe everything is already ok.

 

 

Life after chemo

My last bad chemo was Wednesday (taxotere and carboplatin), and I find myself reflecting and wondering, What does this all mean? Where am I going next? It would be easy to disappear back down the path into “normal” life, but I choose not to.

It’s common for cancer patients to get depressed and disillusioned when their chemotherapy regimen has ended, and it makes sense when you think about it. For the last 18 weeks I’ve had continuous contact with nurses and doctors who monitored my health. In some ways getting chemo is sickly comforting – it’s supposed to be destroying cells that want to destroy my body. And now I’m not getting it anymore. The security net of chemo has been taken away. Now I get to free fall and figure out recovery on my own.

You can see the chemo on my fingernails like growth rings on a tree, except it’s not growth, it’s destruction. If you look closely you can see six ridges on my thumb nails from the six chemo treatments. Interruptions in my cell growth. My anti-growth rings. One by one the ridges will disappear over time as my healthy cells take back my body.

With chemo out of the picture I am getting a glimpse of where I’m headed, but I’m also looking in the rear view mirror. Everything has happened so quickly and I really haven’t had time to grieve the loss of my breast and five months of my life. Chaotic doesn’t even begin to describe how the last five months have been. When I take a hard look, the chaos has been around a lot longer than that; it’s been more like two years. Cancer shoved that chaos over the edge adding in a big dose of terror and mortality.

It feels like I’m going backwards, something I don’t really ever do, but I have to if I’m going to process all of this in a healthy way. I have to back up to my mastectomy and take on those feelings. I have to figure out what this all means for me and where I am going next. Backwards is the new forward.

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.

 

 

 

One bad chemo left. Will I get radiation?

RadioactiveSymbolTime sure does fly when you’re not having much fun. I can’t believe that I only have one bad chemo treatment left, February 10. It’s going to be the end of a chapter in the Cancer Book for me.

But my story doesn’t end there, that’s for sure. Everything has changed and my post-chemo life will begin to show itself. I will still have nine more months of Herceptin, a targeted chemotherapy, but it will be nothing compared to how six rounds of Carboplatin and Taxotere have wreaked complete havoc on my body.

I’m meeting with a Radiation Oncologist next week, and I have to admit I am hesitant to get radiation. I just got my ass kicked from chemo; I’m not too willing to rush into radiation. The kitchen sink seems to get thrown at cancer, but in some cases there’s not enough information out there to tell us what really works and what doesn’t.

I had two positive lymph nodes which is a gray area for radiation. Long-term radiation studies have focused on people with four positive nodes or more. I’ve also done a lot of research on radiation therapy and found out that, yes, radiation can kick your ass in, too. It can fatigue you, burn your skin, change the texture of your skin, cause skin pigment changes, increase your risk of lymphedema (swelling), cause a secondary cancer, increase risk of heart and lung damage (especially if it’s on the left side, which mine would be), and you can only treat an area once time in your lifetime.

I feel like my left side is already severely compromised. I can’t feel most of it, and there is a lot of scar tissue that has been changing and evolving since the mastectomy. I am still getting to know this part of my body again. At my check up this week my breast surgeon told me the actual scar tissue on my chest is the size of a dinner plate, because that’s what was left gaping open when the breast tissue was removed before the skin was pulled together. So what looks like a ten-inch line scar is actually a ten-inches in diameter round area of scar tissue. That’s huge, and it’s still healing.

So far each doctor has deferred to the next. The Breast Diagnostic Doctor: Whatever the surgeon days, do. The Breast Surgeon: Whatever the oncologist says, do. The Oncologist: Whatever the radiation oncologist says, do. I don’t know, my gut says don’t. And who knows, maybe the Radiation Oncologist will see no need to treat it.

All I know is that if radiation is recommended, it is going to be a hard sell. Since the Herceptin is supposed to be a nail in this cancer’s coffin, I’m going to need to see some serious data showing that the benefits of radiation will outweigh the side effects.

 

 

 

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.

 

 

I don’t do Resolutions

Amount of New Years resolutions I’ve ever made: zero. It’s not my thing, never has been. I’m hard to keep up with (ask Amelia). I am constantly moving. I see possibility and go after it, think something and do it, dream something and make it happen. I am a walking resolution. I resolve to get shit done all the time, cancer or not, depression or not, financial instability or not.

Because I’m constantly changing, I am often a ball of contradictions. I love change; it’s a constant, and it’s happening right now. How I feel and think today could change tomorrow because if I’m rigid I am not open to possibility.

With cancer there is no room for rigidity. You are forced to go with the cancer flow. Monday I worked my butt off for eight hours installing heat ducts, patching a floor and removing a tub; tomorrow I may cry half the day (while working).

Crying is a pain in the ass. It gets in the way of work for me. It makes me stop and feel something I’d rather not feel. It’s as inconvenient as cancer. I was not much of a cryer before cancer, but now I cry more frequently, though unpredictably. Yesterday I was working on heat ducts in the basement and I found myself crouched down with my head in my hands, weeping. One of those I have cancer, when is this going to stop moments.

The alternative to crying is anger with a side of resentment, and nothing good comes out of either of those things.

Lesson of the week: crying is good. If I did have a 2016 resolution, it would be to feel more ok about a good cry.

 

This is the chemo diet

Chemo has killed most of my tastebuds, literally. They’re all but gone. A few sense a hint of salt, a couple increase sour by 1000%, and the rest pick up every bitter flavor known to humans. My mouth feels coated, and for lack of a better word, hairy. The tip of my tongue is numb, like it was burned sipping a scorching hot cup of coffee.

When I realized that all I could really taste was bitter, I sampled all the spices in our cupboard: allspice, basil, cardamom, cayenne, cinnamon, black pepper, garlic, cloves, mustard, paprika, sage, thyme, ginger, coriander, fennel, salt. What I learned was that most spices are bitter, really bitter. Sage was the worst (once one of my favorites), and garlic and black pepper were almost as bad. Surprisingly, cinnamon is one of my new faves (it’s really good mixed in with black beans, btw). And salt is my new best friend.

Regarding foods, I now prefer plain and white. It’s very unlike me to want to eat white foods, but during chemo you eat what you need to eat. Malnourishment is a very common issue during chemo. You have to find what foods work for you and stick to them. For me, it’s mashed potatoes, oatmeal, eggs, corn, white gravy, bread, broth, chicken, pasta with butter, yogurt, soft cheese, white beans, white sugar, and for an attempt at a little flavor, caramelized onions.

There is no joy in eating when everything tastes bitter or like nothing at all. Today I drank a Coke and it tasted like mildew to me. I tried to eat a piece of sourdough bread, and it was like I bit into a lemon peel: intense  and revoltingly sour.

This is where mind over matter can help. I keep reminding myself that food tastes good, and I try to override my brain which is screaming at me to stop eating. And it works, to an extent.

I cannot wait for chemo to be over so I can once again enjoy pickles, hot sauce, sausage, squash, stinky cheese, citrus, champagne, or as Amelia says, everything but stew. I love food. Except stew.

Conclusion: Life is pretty damn boring without tastebuds.

 

The is not the chemo diet

Chemo fries fast-growing cells all over your body: the lining of the mouth, gut and respiratory tract, bone marrow, hair, nails, and skin. All of these things take a serious hit – my bald head can tell you that. There are a lot of things that I’ve done to try to minimize chemo’s effects.

The one thing I don’t do is take any supplements or vitamins without checking with my doctors. You don’t take antioxidants that help repair cells when you’re trying to kill cells, you don’t take things that are processed by your liver when your liver is already taxed, and you don’t take things to try to boost your immune system when it could also boost cancer cell growth.

From day one I read everything I could get my hands on, scouring for information, for answers. Folic acid, vitamin A, vitamin E, vitamin C, milk thistle, green tea extract, mushrooms, antioxidants, garlic, alpha lipoic acid, marijuana. The first few weeks I’d go in with endless questions for my oncologist, “Have you heard about this? Does this help? Can I take this?” It was a resounding “NO” every time. I finally got it, stopped searching for the magic bullet, and let the chemo do its nasty work.

Chemo is quite a ride, and you can’t get off until it is over. You have to hunker down for 18 weeks (or more or less, depending on your regimen), endure it, learn from it, grow from it (not the cancer though – it can die) and begin rebuilding when it’s over. After chemo, that is the important time. That is when the real recovery begins.

Scar tissue

The ultrasound was clear yesterday! Woo! The doctor at the Wende Breast Clinic said it is scar tissue. One less thing to worry about.

In case you didn’t read my previous post, last week Dr. S (my oncologist) bugged her eyes out of her head when she felt what she thought were lumps above my mastectomy scar. She announced in her all-business Romanian accent, “These should not be here! I am ordering an ultrasound immediately!” Amelia and I were on edge to say the least. Let’s face it, we all write stories, usually bad ones.

After the appointment with Dr. S, Amelia and I talked about how my breast surgeon, Dr. Y, would probably have reacted differently. He would probably say in his chastising Jewish accent, Look, that area is going to change. It’s totally fine. Stop worrying. Are you stretching? Show me how high your arm can go. 

It’s good Dr. S wanted it checked out even if it was a false alarm. This is a time when if anything feels not quite right, you get it checked. This is not a time to ignore the little things; it’s a time for hyper vigilance.

 

4th round of chemo

Today was the over-the-hump-day for chemo. I am now more than half way through my treatment. I’m still quite neutropenic, and my liver numbers are through the roof, and will be for the duration. I will try to lay low for the next two months.

I’ve had some discomfort in the area above my mastectomy scar for the past week. It feels like it’s bruised and tender to the touch. Today during my exam, my oncologist found two nodules (lumps) there. Big trigger of emotions for Amelia and I. BIG. We both felt like the bottom dropped out, again. The doctor said they could be cysts, but she was very concerned and said I need an ultrasound as soon as possible. We are trying to process this information. Worry does not help. Assuming does not help. Waiting for answers is torturous.

I’ve always had cystic breasts. When I would get my yearly mammograms I’d get my cysts aspirated as well. And there were LOTS of them, giant “whoppers,” as one breast specialist told me. When a surgeon performs a mastectomy he/she tries to take all the breast tissue. It’s hard to know when to stop cutting, and inevitably some breast tissue could get left behind, especially when they’re dealing with a very large D cup. That’s why it’s possible these lumps could be my typical cysts, even though my breast is gone.

Once again, it’s crappy timing around a holiday weekend, just like my original diagnosis where we had to wait through Labor Day for an MRI. Today is Wednesday, and the ultrasound appointment isn’t until Monday. There’s a really good chance that the lumps will get biopsied to rule out the worst case scenario – that cancer is growing and thriving on my chest wall while I am freakin’ getting chemo. Hell, no!

I just keep telling myself, They’re filled with benign fluid. They are filled with benign fluid.

Living with cancer

The trauma of cancer does not go away.

I’ve talked about it before and time hasn’t change the deep feelings of grief that I have. Most of us have directly experienced a significant trauma or loss and most of us do the same thing: repeat the traumatic event over and over in our heads trying to make some sense out of it, trying to process it. I am still doing that. I am on repeat in my head, and out loud at times.

I’ve slowed down on writing because lately the same feelings keep bubbling up that I’ve already written about: loss, grief and sadness. I’ve had a body part amputated, lymph nodes removed, my insides fried, endured terrible side effects, and lost my hair. I am a different person physically and emotioanlly than I was three months ago. I have to figure out how to live with this for the rest of my life.

I don’t really want to dwell on my dark thoughts, but I don’t want to hold on to them either. Letting go of them is extremely hard. There are too many “what ifs” to wrap my mind around.

Lately I keep thinking of the future, and what I need to get done to ensure Amelia’s future if I’m not here, if I die from cancer. HER2+ breast cancer is notorious for recurring years down the road in places like your brain, bones, and liver. My dark thoughts tell me it’s not a matter of if, it’s a matter of when, so I need to finish this building, open the business, build another teardrop trailer, re-do the bathroom. The fact is, I could be with Amelia for another 100 years and it still wouldn’t be enough time. She is what grounds me to this world.

I have paranoid moments when a flash of light catches my eye or my vision gets foggy and I think, It’s in my brain. An ache in my right side, It’s in my liver. A creak in my bonesIt’s in my spine. 

There are no reassurances about anyone’s future, but even more so with cancer. When people say, “You’ll beat this,” they are reassuring themselves, not me. Though nothing is written in stone, I got a glimpse at what my death could look like. I could be going through all of this just to die. And I need to figure out how to live with that.

 

Cancer and Star Wars

Social media has done a good job at connecting people who may otherwise never know each other. It also has the potential to really screw things up. It’s amazing the shitty things people can just pound out on the keyboard that they would never, ever say to a friend – or stranger – face to face. Most people would never go up and yell at a stranger, but somehow people feel like it’s ok to do so behind the safety of their little computer. Don’t be too proud about the technological terror you’ve created. -Darth Vader

It is so common to see people get bashed and hated on by something that excites them and makes them happy. Take Star Wars, for example. I will go see The Force Awakens and for two hours and sixteen minutes I will not think about my cancer. It will be a wonderful escape. Amelia will be happy. But people have to mock the movie and its fans on Facebook for some reason. I’ve got a bad feeling about this. -Han Solo 

I admit it, I have been a basher before. Harry Potter? Twilight? Role playing games in the woods with make believe magic powers? Yeah, I’ve made fun of all of that. I have bashed their joy. I was wrong. Your feeble skills are no match for the power of the Dark Side. -Emperor Palpatine

What does this have to do with cancer? Nothing. And everything. Life is short, and cancer magnifies that fact. Luminous beings are we, not this crude matter. -Yoda

Having cancer has made me a more compassionate person. I know I have to actively work on my outlook and judgement of others. It’s not enough to not speak it; I need to change what I think. I need to practice it. These aren’t the droids you’re looking for. – Obi Wan

My final thought: Don’t wait until you have cancer or some other negative life-altering event to have more compassion and actively work on your judgement of others. Do, or do not. There is no try.  -Yoda

And yeah, I kinda like Stars Wars.

Light Saber

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.

 

 

 

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.