There isn't a lifetime maximum assigned to an individual for misery or suffering. It is fluid. I didn't understand that prior to having cancer. As someone who has gone through a lot in life, suffered a whole lot in life, and had actively worked to move beyond that pain I thought I was free and clear. I honestly thought that we all had out there in the ether somewhere a meter counting down our misery and once we reached it the rest of our life would run fairly smoothly.

When I first got cancer I was so pissed off. I treated it as an affront. Dear Universe, How Dare You?!?...

Then I got cancer a second time but it came about so quickly that it kind of got lumped in with the first round of cancer and while it worried me, no one else seemed to think it was that big of a deal.

And now I have a lump. It isn't a big lump. Actually, I don't really think it's much of a lump at all. It's just that something feels different. Something feels...not quite right. I remember this feeling. I remember ignoring this feeling. And here I am again. If I hold my arm a certain way then there's definitely something there... but then I shift my weight and it isn't there anymore. Am I crazy? Overreacting? A hypochondriac?  Please, God let that be the case. I'll go see the breast surgeon on Friday and have things checked out. See? I'm learning. I won't sit here and talk myself out of doing anything for fear of being seen as overreacting.

I will put this out there in the universe because no one really reads this anyway but I won't tell anyone. I haven't told my husband or my best friend. I will own this worry and fear and will hold it close to myself rather than unload it onto those who can't do anything about it anyway. It feels almost peaceful to hold this to myself and let my mind work through this without having to worry about the suffering of others. I am recognizing that this is forever. There will never not be a lump, or unexplained pain, or wonky lab results, that could trigger the renewal of all that old shit they thought was behind us. Maybe it's nothing and I never have to tell them. Maybe in a few weeks all of our hearts will be breaking again.

And another thing

I've already written a blog post today but my brain is full of with things I want to say and these days I find myself rushed to get everything out and said before I forget it because believe me, I will forget it.

I want to say that there are things in my life I'm doing to get better, even if I do seem hateful and mean and angry and bitter. I don't think it represents a place of healing but I realized if I were to be facing the end of my life there are things I would feel bad for not having done or tried. It isn't a bucket list, it's me spending time investing in myself. If you invest in yourself it means you have hope for the future right?

I'm taking guitar lessons. I'm lousy at it. I don't think the lessons are very fun and I kind of dread them every week but I still want to learn to play. It's hell on the fingers, especially when you are suffering from hand-foot syndrome.

I signed up to take a bread baking class at the King Arthur Flour baking school. I've wanted to for years but could never find a time to do it. I'll take a whole week off next month and spend my vacation time up to my eyeballs in carbohydrate deliciousness.

Last weekend we went away to the mountains and I bought a whole bushel full of apples. I spent the last few days canning them. I must believe I'll still be around for a while if I'm going to make 2 dozen jars of apple butter when I'm the only one in my house that likes it. I guess that means I think I'll be around long enough to eat it.

My husband bought me a Peleton bike for my birthday and I let him. No...I encouraged him. Y'all just don't realize how cheap I am. That kind of expense about took my breath away. I justified that it will last me until forever... and when I said it I truly meant that to mean years and years. I love spinning. I'm enjoying something I enjoy.

Still here

I hate this blog. It hurts my feelings and makes me reflect on myself in ways I would rather avoid. Sometimes I forget that I've written something and I will come here and reread it and it will rip at scabs I didn't even know were starting to heal. Did I really feel that way in that moment?... I suppose I did.

It helps me to write these words even when I hate what they say about me. It's a form of therapy. I'm not in therapy though I'm not opposed to it. I don't think I'm ready for therapy. Therapy is about moving forward right? About finding ways to cope and move on... I'm not there yet. I'm still here picking at scabs.

On reflection

I passed the year mark. I did it. I have not been one year cancer free but I have been one year living a life I knew I would hate and doing it anyway.

I don't hate my life. I hate the circumstances I am living in. Do you watch the Handmaid's Tale? Do you remember that scene where Offred was talking about reduced circumstances? That's how I feel. My circumstances have been reduced. I am no longer free to live with careless abandon and freedom. I am smaller. My world is more limited. I know too much. Have seen too much. But there are things that I can still be grateful for. I have hot coffee...a cupcake for lunch...music that makes me want to dance and books that make me want to cry...today the wind is blowing so hard I stood outside in it and imagined that it could blow my very soul free of the burdens of my body.

2 more cycles of chemo to go. Will I always be this tired? I hope not.

The things we do to ourselves

I have never really admitted to anyone, not even my doctors, how long I went knowing something was wrong before I said anything. Or how long before that I had noticed something was kind of off but I couldn't quite put my finger on what it was so I didn't really say anything.

I never admitted how long I put off making the appointment and how many times I nearly cancelled it because I was worried that I was being an alarmist. How stupid or guilty I would feel for making a big to do over something that was probably nothing. How I didn't want to spend the money on the copays or it was a huge inconvenience to get the time off of work when we were in our busy season and getting someone to cover for me would have made me look bad.

I was diagnosed in October 2018. I first "felt" the lump in June of 2018. More than a year prior to that I was in the shower and thought, is that a lump? but then if I moved my arm in a different direction I didn't really feel it anymore... and if I stood in front of a mirror and raised my arms there would be a sort of crease under my left nipple that wasn't on the right and I'd think...has that always been there? And eventually the crease that was only there when I lifted my arms was always there no matter how I held my arms and if I stood a certain way that maybe lump was actually a lump so I just stopped standing that way while doing self exams.

I was a diligent self examiner. I've had a lot of boyfriends and a couple husbands but no one has ever touched my breasts as much as I do. I knew my breasts. But when I felt something I kept my mouth shut. I knew better. I honest to god knew better and I did it anyway.

I think about this a lot. I think about the ways I talk myself out of advocating for myself. I am the first to accept a cop out. A nonsense answer by a physician to a statement or complaint and even if I know they are feeding me BS I will nod my head right along and go with the flow. Don't be an alarmist Stephanie. Don't be a drama queen, Stephanie. Don't be that patient that everyone hates, Stephanie.  Do we, as women, all do this to ourselves? So programmed towards focusing on others and not being the cause of strife or stress in our households, we are willing to forfeit our lives in the process.

This may well be something I carry to the grave without ever being able to say it out loud. I nearly cost myself a chance at living.

Nowhere/Everywhere

In a few weeks it will be one year since I was diagnosed. I'm still on chemo. My hair is still short. My port is still in. Some days I think I might just make it. Some days I wonder how anyone can survive this at all.

It might be bad, but it's better than cancer.

Cancer is not the worst thing to ever happen to me, it is just the most unjust.

I have entered into a world where people confide in me their small complaints or woes and then immediately get a look of pity on their face and tell me they should feel grateful since I'm going through so much more. I don't like that. I hate the pitying looks but more than that I don't like having to remind people that we all are allowed to experience the pains of life without feeling guilty that someone else's pains are worse.

Cancer was not the worst thing to happen to me. It just happened to happen at a point in my life where I was beginning to feel like the worst things were behind me. I left behind an abusive childhood. I left behind an abusive spouse. I was leaving behind the self loathing and fears and doubts. I had finally found a place in life where I was not constantly afraid. After spending more than 30 years being constantly afraid, on alert, ever vigilant and ready to hide, I was spending my first days on Earth relaxed.

And then I got cancer.

The fear I live in now is worse because I had those precious months of not being afraid at all. I had left behind my survival instincts.

What a cruel, cruel world we live in. I'm sorry your car broke down, or your dog is sick, or your spouse hit you, or your mother neglected you, or any of the million things you find hard to bear but better than having cancer. I'm sorry you're going through all of these things because I've been through all of them too. I know the hard truth is that we will go through all these awful, trying things and think one day that the world finally owes us a break. And then you get cancer.

I hate the word Survivorship

Cancer has made me sad and if at any moment I burst into tears I know that it is because of cancer.

More than being sad though I am so very, very angry. I want to stand on the edge of the world and rip it apart piece by piece while screaming about the injustice and indignity of being a hopeful woman in a hateful world. I want to tear down and destroy. I want to take others down a notch. Remind them of how hopeless and temporary and futile this world is. I want to take myself down a notch. Give myself a damn good reason to die. I want to drink too much, smoke too much, drive too fast. If I want to destroy the world it's nothing compared to how much I want to destroy myself. 

I look through old photos of me the way you'd look through the Facebook profile of an old boyfriend. I do it with unhealthy intent, knowing in my mind I'm searching for reasons to dig myself deeper into this well of self loathing. I hunt through those images and silently ridicule myself for my ignorance of what was to come. 

Boo hoo. 

Mountains and Wildflowers

My mountain is large, but it is absolutely covered in fields of wildflowers.

People tell me that when all of my treatment is over I can look back on this past year and chalk it up to just a terrible year but you know what? It hasn't been. I was diagnosed in October of 2018 and I do not think it ruined my year. 2018 was one of the best years of my life and 2019 isn't looking too bad either.

This mountain I'm climbing hurts my back, my legs are tired, and I can't see the top from where I'm standing but I'm still here, and I'm still climbing. The beauty of it mingles with the pain and I can appreciate the worthiness of the struggle. It reflects back to me the common thread seen throughout my life; I am more than one thing.

It becomes easy to be consumed by the label of cancer. Days pass where it is all you talk about with your spouse, all you think about when you aren't talking about it, the core location for where all of you money, time, and energy is focused. If you are very lucky, time will pass and you will find yourself passing a day where cancer neither entered your mind nor your conversation. The mountain will never go away. It will shift and change as your life shifts and changes but I hope it is always covered in fields of wildflowers.

Surgery next week. I hope the drugs are good.

Chemo Brain

Chemo brain is slowly watching your cognition decrease and thinking there are things you can do to stop it. Chemo brain is the character Charlie from Flowers for Algernon.

Chemo brain is 30lbs of potatoes in the house because you keep forgetting you already bought some.

Chemo brain is losing the ability to put together an outfit and going to work dressed like a preschooler who insisted on picking out her own clothes.

Chemo brain is celebrating, and I mean hardcore celebrating, when you remember to follow through on something.

Chemo brain is starting this blog and then forgetting you've done it...

On March 20 I went for my regularly scheduled weekly Taxol. When I went back a week later for my next dose the doctor decided to hold off a week to give my side effects a chance to settle down. A week after that it was decided that we would quit altogether. I finished chemo without even realizing it. It's f*cking terrifying.

Peace be with you.

I had an abdominal CT done last week and there is no fear like the kind of fear that comes with waiting for scan results. I was talking out my anxiety with my husband and he told me that life had been pretty unkind to me in my 34 years and surely I was due for a bit of a break. I told him that life had been unkind but in turn it has lead me to find ways to be kinder to myself.

That's what I struggle with. In all of this anger and hurt and sadness it's easy to think of it as being directed at the cancer but since the cancer is inside of me I'm also directing those feelings at myself. I'm working to forgive myself. To find peace with myself. Cancer may be the big-bad-ugly but it is bits of me that went wrong and I'm coming to grips with that. It is really hard to be so thoroughly betrayed by your body and still wrap it in a comforting hug and tell it everything will be ok. 

There is a part in the Catholic mass where you shake hands with those around you and tell them "Peace be with you". I am shaking hands with myself and saying peace be with you, Stephanie. 

The Nowhere Place

On October 15, 2018 I was diagnosed with breast cancer. Matrix forming metaplastic triple negative breast cancer to be exact. It's a scary cancer. Show me a cancer that isn't. 

All I could think of when I got that call and everyday since getting that call was I don't want this. Not the cancer. No one wants cancer. The everything else that comes with having cancer. The half life, the fear, anxiety, dread, cycles of panic and relief. The pain. The fear. I wrote fear twice and that was intentional. I'll say it a third time: the fear. I call cancer The Nowhere Place. Until you have cancer you don't understand. And maybe some people with cancer won't understand either. Maybe only I do. 

Cancer is The Nowhere Place. Once upon a time I was alive and I lived everyday like I was alive. Then one day, in one phone call that lasted less than 3 minutes, I discovered that I was neither alive nor dead. I was in the nowhere place in between, sentenced to a life of waiting to see which way the pendulum would swing.

How I railed against this new place. For me this is the worst. The most untenable. The bridge too far. This slow swing between living and dead digs at me. I find it most unfair. I can wrap my head around being alive and I can wrap my head around being dead but I want to either be alive or dead. It isn't suicidal ideations or a passive death wish. It is looking at life and seeing 3 years, or 5, or 50, of being in this nowhere place and being sentenced to an unknown lifetime of that fear. That anxiety, and dread, and cycles of panic and relief. A future of waiting for scan results and refreshing the MyChart page to see if my labs are loaded yet. I don't think that's living...but it isn't dying either.