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.

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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.

 

 

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.

 

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.

 

 

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.

 

 

 

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.

 

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.

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.

 

Hair

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

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

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

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

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

Expectations

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

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

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

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

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

The Lesbian in the Room

by Amelia

You’d think cancer would be the Elephant in the Room. It’s not. The people who don’t want to talk about it simply never enter the room. The ones who are brave enough to join us there tend to have an intense curiosity about Leah’s experience. They ask a lot of questions about the details. They know they could be in her shoes (bra) someday and they want to understand.

So what’s the Elephant in the Room then? Well, it’s me. The wife. Without me in the room, Leah is a patient. With me, she is a lesbian patient. And I’m the other lesbian. And it is easier to ignore me than it is to acknowledge the elephant.

We’ve met with two doctors so far who walked in the room, said, “Which one of you is Leah?” and then didn’t greet me, introduce themselves to me, or even make eye contact with me during the appointment. I was invisible. I was Leah’s sister. Or Leah’s friend. Or the person who gave Leah a ride and didn’t want to hang out alone in the waiting room so here I was tagging along in the exam room for, oh, I don’t know, how about one of the most intimate and distressing conversations of Leah’s life?

This might not bother me if we were at the doctor’s office for a flu shot or a strep test. But the words out of these doctors’ mouths include things like, “You have to have chemotherapy for 18 weeks,” and “You’re going to lose all of your hair,” and “The side effects include DEATH. Now sign the consent form at the bottom.” The doctors know that most people don’t make decisions about cancer treatment alone. I am 100% certain that if I were a man sitting next to Leah, they would have assumed I was her husband, and I would have been included in the conversation from the start.

Whether or not I will be acknowledged as Leah’s wife should be the last thing on my mind during a time of crisis. But doctors like this remind me – and Leah – that we still need push for some people to respect our relationship. I speak up, I jump in, I contribute. The doctors look surprised, then start to talk to me, too. This elephant has a big mouth and asks intelligent questions.

Are you sisters? Leah chooses to introduce me from the start now. “This is Amelia. She is my wife.” Nice to meet you, most of them say. The ones who pause to freak out about our sexuality need to suck it up, because cancer doesn’t discriminate. This is a life or death situation, and we haven’t got the time or energy to battle homophobia.

The side effects

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

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

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

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

The other war

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

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

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

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

Genetic testing

Getting tested for the 26 cancer genes was extremely nerve-racking for many reasons, but mostly because the woman who talked to us did so with unreserved glee. There was a twinkle in her eyes when she asked, “Do you know why you’re here?” Genetic Jessica didn’t give me a chance to answer. Instead she leaned in across the table and announced dramatically, “Because you are WAY too young to have cancer. WAY too young. And I’m going to tell you all about the genes you don’t want to find out that you have.” She leaned back into her chair, tilted her head to the side and gave me the oh-you-poor-thing-you-have-cancer face. Cancer face, that’s what Amelia and I call it. We all know what that face looks like. If you think you’ve never seen it, try replacing the word ‘cancer’ with other words, like divorce, miscarriage, losing a job, break up, or addiction, to name a few.

When I gave the geneticist my history (mother just diagnosed with breast cancer, brother with an unidentified melanoma-type skin cancer a decade ago), she gave my a very grave look and pointed at one of the cancer genes on her chart of horrors. “This gene right here links breast cancer, melanoma and pancreatic cancer.” She raised an eyebrow and gave us a knowing look followed by a dramatic pause. Who the hell is this woman? I wondered. And why is she pelting us with massive amounts of negative information without taking a breath, almost proud of herself for the speed of her delivery of morbid news. I felt like she wanted to reach across the desk and shake me by my shoulders and then squeeze me into her bosom. Back off, lady.

A month later I found out that I don’t have any of these genes, but Genetissica wanted me to come back to meet with her anyway. Why? Well, Leah, there’s this other gene, that could be meaningless, and we don’t really know what it does, if anything, and it won’t affect your treatment choices, but I can tell you all about it in person. Um, hell no, Genetissica! I’m not spending another hour in your office of doom and drama.

Genetic testing is pretty amazing though and will continue to be a great tool for all sorts of illnesses. This ‘other gene’ I have is RAD51C, and there’s not enough data out there to even be talking about it yet. Ask me again in ten years.

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First chemo treatment

One of the pre-meds I received in IV form was a hefty dose of Benadryl. Saying it made me tired is an understatement. That stuff knocks me out. If it wasn’t for the other nasty chemical cocktails* I was getting afterward, I might enjoy the trip to Lala Land. But Greedy Little Cancer loves to takes up every possible space in life. What an attention seeker. Yup, we see you there, Cancer. No one invited you. You can get out, and take all your nasty offspring with you.

Sitting in a sterilized cubicle for five hours made me feel pretty restless and bored. I brought things to read but the Benadryl made me so loopy it was hard to retain anything. I just read the same sentence over and over. Lucky for me that I love driving games, so out came my iPad and my inner 13-year old. Drugs be dammed, I was going to blast down a digital highway at 150 miles an hour. Hell, yeah. Everything in moderation, though. I will never ever own a Wii or anything like it. Ever. Harmless fun can easily morph into an addictive, mindless obsession that gobbles up hours and hours. I’d always prefer to be physically doing something. But during this time of cancer, I will drive as fast as I can as often as I can within the safety of my iPad. No seatbelt required.

The first treatment takes the longest. Each drug is set up to go in at a slower rate in case of any adverse reaction. I had no reactions at all. The only side effect I’ve had so far is a metallic taste in my mouth. I’m pretty sure this will not go away for the next four months and ginger candies will become my one of my new best friends. I haven’t had any nausea so far, knock on wood.

Port incision and bruise

Port incision and bruise

My port is a triangular ‘power port.’ It is larger than a regular port, and can receive fluid at a higher rate. The heart-shaped bruise in the picture is where the port sits (and bulges) under my skin. Not everyone bruises, but it’s like a blood draw where sometimes you can get a temporary discoloration. The surgeon had me initial the area pre-surgery.

I was quite disturbed to see how large the port incision was. It’s around 20 stitches. Update: I originally thought my mastectomy scar was 30 stitches. We asked the surgeon last week and he said it was more than he could count, and that he lost count after 50. Holy Franken-chest Stitchville.

*The day’s nasty chemicals include: Benadryl, Decadron, Zofran, Pepcid, Taxotere, Carboplatin, Herceptin, Cyanocobalamin, and Heparin.

Depression vs. Cancer

As I sit in my chemo cubicle and seven different chemicals are dripped into my vein, I can’t help but think that depression has got nothing on cancer; at least for me it doesn’t.

Honestly, I don’t have the time or energy to give in to depression right now. For quite a long time I’ve thought that depression is very selfish on my part. Now I clearly see my depression as a choice: I can choose to be depressed or I can choose to not be depressed. Depression is a very grey area. Cancer is not grey; there is no choice involved in getting cancer. The past six weeks have made me stop and ask myself, How could I possibly give in to depression, something that is so vague? Cancer is incredibly real and concrete. I have to give in to the fact that cancer is here, it is real, and it needs to be stopped by any means necessary.

I was defined by trauma and depression, but now cancer is reshaping me inside and out. So, Depression, you can take a hike. You’ve been replaced.

Mind, Matter, Modern Medicine

Chemotherapy starts Wednesday; the port is implanted today.  My body is essentially going to be poisoned with the bark of a yew tree, a heavy metal, and an antibody. The bark of the yew tree, of course, is the one that fascinates me. Someone figured out that a tree’s bark could aid in the cure of cancer. Science is amazing.

Now is the time I really need to get myself low. Deep breaths. I tend to be a shallow breather if I’m not paying attention. My breath is up high in my chest unless I focus on it and push it down into my belly. That is a practice, learning how to breathe correctly. Sounds easy enough: in through your nose, out through your mouth. But there’s a lot that needs to happen in between and during.

I will be getting into my meditation zone for chemo. I feel myself settling in and preparing for it. I find meditation a very personal thing, one I don’t talk about a lot because it’s so individual, and honestly, it feels a little weird to share. I think a lot of people get stuck on the word “meditation,” on what it means. People have visions of a monk sitting uncomfortably cross-legged for hours, but I see meditation as anything that helps us get out of our heads, a moment when we aren’t thinking and we aren’t reacting, and we’re just observing for two or twenty minutes. For me, meditation is primarily about being still, but I can also get to a pretty low and still place by being outdoors or playing music. It’s possible that virtually everyone does some form of meditation; they just don’t know they’re doing it.

I’m on Cancer Time now

Acknowledging that there may be cancer cells floating around inside my body waiting to land, divide, and multiply is hard. I want to ignore it and not think about it but the thought nags at me throughout each day. There’s no way of knowing, no tests that could find such tiny things. Aches and pains that seemed normal before September 3, 2015 now easily turn into a quiet paranoia. I find that when something is really truly wrong, there is a stillness and calm that sets in, a dead quiet in my mind. Not really what I would call peaceful; it’s more like an intense focus on the situation, whether it’s that I drilled my thumb, cut a two-inch gash in my hand, watched Amelia’s face swell after a bee sting, or witnessed someone get hit by a truck. Panic doesn’t work in these situations – a purposeful calm does.

The fact is, I’m two stages closer to the real worst case scenario than I have ever been, and it’s an uncomfortable emotional state to be in. I am not usually a time-focused person, but cancer is now forcing me to think about things in more of a time-critical way. When will I be 100% recovered from surgery? When will I adjust to not having a breast? What will the scar look like in a year? What will chemo be like? When will I recover from chemo? When will I lose my hair? When will my hair grow back? When will a day go by that Amelia and I aren’t consumed by cancer? When will I feel normal again? When can I say I am cancer-free? When will I feel safe?

No limits for Leah, please

Before cancer I never really thought about my body’s physical limits because there weren’t any, or I just ignored them if there were. When I was in my late twenties, I got a pretty serious neck injury from playing rugby. (If you know rugby: I was the hooker. During a scrum the other team came in extraordinarily low. My props were too high and I was flipped over by neck, twice.) I should have gone to the hospital. I look back at this and think what was wrong with me and every other person who saw this? Oh, yeah, we were in our twenties.

For days afterward I could hardly hold my head up and I couldn’t move my neck at all. Whether I was standing or sitting, the pressure of my head on top of my neck was excruciating. I played rugby a few more months. Not too bright. I finally went to a neurologist who found two precariously bulged discs in my neck, C4 and C5. He told me that I couldn’t lift more than one grocery bag in each arm, forever. He had a list of things that I could never do again: rugby (duh), running, mountain biking, rock climbing, anything where I’d be looking upward or jarring my spine.

It was a pretty grim prognosis, and one I couldn’t accept. So I started icing my neck regularly, stretching, weight lifting, and strengthening other parts of my body. I had to re-learn how to lift without agitating my neck; that was my goal. It took five to ten years, but today my neck has no physical limits and I am pain-free.

Since my breast surgery, I’ve been counting down the days until I can resume normal activity; the doctor told me four to six weeks. So last week I announced to Amelia, “Twenty-one days!” Meaning I’d be able to dive back into work then. She gave me the oh-boy-you-really-have-NO-idea look and said, “You know you won’t immediately be 100%, right? That’s just how long before you can start working again, and building up your strength and flexibility is going to take time. You’re not going to be at 100% for while.” This is how naïve I am about my own recovery from major surgery. I seriously had no clue. I really did think at six weeks I’d be back to my normal crazy level of working and ready to pick up a 160 pound keg.

When I was at the surgeon’s office the other day, he said around 70% of the healing from surgery takes place in the first eight weeks, and the other 30% takes place over the next year. What. The. Hell. A year? 365 days? This type of news spins me into quite a tizzy, and claustrophobia sets in like the walls are closing in on me. I need to get back to 100% as soon as I can. Sooner than a year.

Now I start counting down again: 338 days.

Preach it, Sister

If it looks, smells and sounds like religion in any form I can guarantee you I will not be interested in it. A “practice,” on the other hand, is something I can embrace. The word practice says something powerful to me. It says I’m still learning, growing, and evolving in mind and body. I take full credit and full responsibility for my massive screw-ups as well as my tiny triumphs. I am thankful and grateful to everything and everyone. But an unbending belief in something – in anything – is a thing I reject.

People can get incredibly devout and preachy on subjects they feel passionate about. To me this often feels patronizing and at times derogatory. Rigidity and the thought that there’s only one way to do something has never worked for me. Let me tell you how right I am: I’m vegan. I love God. I eat paleo. I do crossfit! I do yoga. Sugar is evil. Do you see my beard? White food is evil. I bike 50 miles every day at 5:00AM. I love God. I am God. 

I know one thing pretty well: myself. And I can get preachy, too. I’m going to preach about getting your damn mammograms every year from age 40 on. I’m going to preach about being your own patient advocate and learning about your diagnosis. I’m going to preach about taking as much responsibility in your treatment as your doctor does. I’m going to preach about politics staying the hell out of of my body. I’m going to preach about our fucked up health care system in the United States. I’m going to preach about women’s body image. Recovery is my new practice.