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.

Versions of myself

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

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

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

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

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

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

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

 

 

Date night

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

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

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

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

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