A Story About Recovery, Nine Months Later

 Nine months later, and my hair is still so sparse.  It's thicker, to be sure, because people are commenting optimistically in careful tones about how great it looks.  Talking to me like I'm a sick person, because I am.  I was...I am still at risk, still vulnerable...still recently 'recovered'.  

I am still processing the feelings of this all...how to feel, who to be.  What does it mean to be a cancer survivor?  It sounds so cliche, so much like someone else, like not me, but it also is me, definitionally.  I am a person who has survived cancer, I am a cancer survivor.  So now I have to figure out what that means to me, for me.

Which is not to say that cancer or recovery define me, but I am undeniably changed.  I supposed that's the weird, back-handed gift of my short hair; every morning I wake up to a reminder that I am never going to be the person I was before February 2022, before that first physical, that first imaging appointment.  Before I felt that little lump start to grow in my neck and then, later, saw the bugling image of my cancer straining against the barrier of my collar bone, struggling to grow beyond the confines of my body, my neck, my spleen, by shrunken stomach and infected heart.  

It makes sense, something like that, seeing an invader lit up in bright yellow inside the deepest parts of your own body, entwined with your lymphatic system, impossible to cut out.  Something like that should change you.  No one should be able to stay the same after that. 

And after everything that came after that.  The many tiny losses.  The total physical change that slowly overtook my body as I gripped my past life, my 'normal' life with white-knuckled fists.  

I comfort myself with all the things I managed to keep, all of the normal I managed to preserve and insert in that time.  Rather than focus on the loss.  The times I told my son I couldn't because I was too tired.  The times I felt myself start to faint.  The time I fainted, and lost a bit of time between when I was standing, focused and alert, and when I was on the ground, the man I love standing over me looking as scared as I have ever seen him, me not understandinghow I got down there in the first place.  

The times I would enter the hospital to undress, don those paper gowns and be scanned, imaged, cut open and sewed back up, explored and biopsied.  

The many, many, many ways I lost control over my own body. Or, really, gave away control.  But is it giving away if it is under threat?  If you don't do this you might die, that was the constant fear.  And I am nothing if not obedient in the face of authority and death.

So now, here I am.  Trying to keep up the same face, the same facade.  But now the fear and adrenaline and fight are all gone, because I've won the fight.  

And I am just left here with my body, altered forever but technically health.  My mind, also altered forever but reeling from everything that has transpired.  My thoughts, also reeling, flying from memory to invasive thought to missed deadline to next task, as if getting back to normal is the new goal.  As if getting back to normal is a weighty enough goal to replace my former goal; beat cancer with a smile.

How can anything fill the hole in my to-do list that Beat Cancer With a Smile left?

Best/Worst, Cancer Edition

 Here are some of the worst things about my cancer/chemo journey, not that anyone asked.

Worst chemo side effects?

Bone and joint pain!  oh, i hate this.  It's like a dull, nagging soreness in my knees, shoulders, wrists, ankles.  In my arms and legs.  Especially at the end of the day and first thing in the morning.  Tylenol will knock it out usually, but I am always worried about timing the pills so I can sleep through it.

Hair loss.  The journey that I have been on with my hair this year is long and complicated.  I look like a crazy person almost every morning.  I started trimming my hair as it thinned, doing a half-assed job.  Finally got it cut in July, and it looked like healthy hair again for a few weeks before even at that short length the hair loss beat out my attempts to look like myself.  I no longer ask folks what they think because I am terrified of hearing the lie in their voice when they say they haven't noticed.  I wear my hair up every day and am not far from putting a scarf over it all. 

Tired is not the right word.  My body feels like someone else has used up all the fuel, all the youth and strength, and I am left piloting a vehicle with no gas in the tank, trying to turn the radio off to conserve juice.  It comes at awful times when I want to push through...baseball games, birthday parties, August's school picnic.  Sometimes I cry form exhaustion, or faint.  It is embarrassing and frustrating.  I have never not been able to will my way through a situation before, and I hate feeling so tired, so weak.

Best?  That's easy.  The people who came though for me in a thousand small and big ways.  Chris, holding my hand as they punctured my port the first time.  Emily sending August ice cream money.  Promising to visit if I would just ask.  Jenna surprising me, traveling down for our not quite chemo weekend in a hotel.  Marsh, Omo, Dave, Delaney, Mom, Jon, Diane, and Steve all pitching in to help with childcare so I could focus on work and my health.  Sheila sending me articles about head shaving and information so I wouldn't have to do my own depressing research.  The flexibility offered to me by David Lang at work.  Oh the sweet, thoughtful support of my amazing students.  The words from folks I'd lost contact with over time.  The jammies from Melanie and my cancer guidance and gifts form Aunt Joanne.  Chris taking care of August, making me a milkshake or soup or dinner.  Chris telling me I look the same as I did when we started dating 6 months into chemo draining all the rapid multiplying cells form my tired body.  Chris sitting with me at the infusion center, putting on ancient aliens and the price is right.  Trish, calling to check in day after day, making sure I am okay after every day.  Emily, tracking my chemo schedule from Indiana.  Jenna, being the place I put my fears, my safe place to be honest and sad and scared, so I could be happy and positive the rest of the time.  Trish organizing my meal train. Nathanial and Belinda picking up where Chris and I leave off with Squidy.

Strangest?  The journey progression that hair loss has been.  It was not a single day, a moment.  Hair loss was a daily reminder of being sick, evidence of chemo hanging off me and staring at me from the mirror morning after morning.  I started to dread shampooing because the unmanageable handfuls of lost hair I had the frustrating chore of collecting each morning.  I cried in the shower about that one a lot.

Sitting in the big comfy chairs at the infusion center every other week, I was surprised but how much my fellow patients complained.  I get it, to some extent.  We're sick.  But isn't that the best reason ever to try to see the bright side, to take control, in the face of such loss of control over our bodies, of how we feel and react?  I get that I might sound naive, but for me that's what made this whole process simpler; the control I had over me.  I lost control of my body and choices in so many ways, between the surgeries and scars, the implanted port, the limitations on what would make the chemo worse, and the ways my body responded to the chemo with more limitations.  So smiling and laughing in the face of all of it felt like the way to win, the way to pass the time with all of the wonderful nurses who made it as painless (literally and figuratively) as possible.

 

Silver Linings and Rainbows

 Yesterday I had a bad day; I was feeling crummy, feeling sorry for myself.  A pulmonary function test showed decreased lung function, which implied the strongest of my four chemo drugs might be causing permanent damage.  Pulmonary Fibrosis.  This meant a 12 day delay in chemotherapy and a new batch of unknowns after feeling so confident in my chemo routine.

Yesterday a tiny misunderstanding sent me to Chris' room with a scotch and a couple of comfort foods.  Today, I woke up newly committed to feeling okay, even as some of the unknowns stubbornly lasted through my 'education'.  Then, in the nearly empty infusion room where I get my treatments, I overheard the nurses talking about a patient.  Apparently this patient came in for her oncology appointment, only to be told she'd been referred to hospice.  This woman was only a few years older than me, also with children, and was apparently not expecting this news.  

Hospice is a word people have used with me before.  Somehow it manages to escape some of the awful connotations other words, like cancer, carry.  It doesn't sound immediately like death, but it is.  It is a promise from the medical community to help you be comfortable, but that promise feels condescending and insulting to those of use who are still fighting.  Like I am.  Like this poor woman who could have been me thought she was.  That's why the nurses were discussing it; they'd had to help this woman bear the news, asked her if she wanted comfort care now or to go home.  She thought the fight was still on, but her oncologist had already made arrangements for her surrender to the disease.  In that moment her diagnosis went from being a protracted struggle to a slow submission.

I remembered all the worries I had briefly, before I learned how manageable cancer of the lymphatic system is.  How confidently I get to tell folks that my cancer is curable, is already undetectable in my body.  Even though the chemo is no picnic, and risks and uncertainties keep popping up, no one is asking my insurance for permission to make me comfortable.  And I suppose that's the lesson; I am healthy enough to keep being uncomfortable until  the doctors are confident I can return to a life pretty close to normal.  I can wrap up chemo today and have a slice of pizza with my man, a snuggle with my boy, and plan the next trip.

I am so damn lucky, and the light of all that good fortune banished shadows of doubt and self pity back to the darkest recesses of my mind.  Because I am the lucky one. 

Just Stop.

 Everyone wants to talk about your weight loss until they find out it's because you have cancer.

Maybe stop talking about peoples' bodies.

Borcherding

 I still cry when I see his name. 

He died years ago, 8 now, and at the time I remember if it was fair or right that I felt so sad, so wounded by his sudden departure, that my loss felt so great.

And there here, hundreds of miles away and 8 years since saying goodbye, and I see his name in a footnote and tears rush to my eyes before I can remember why.  The feeling is reactive, immediate.  It is not a thought, it is a reflex.  I still miss him imperfectly loud as he was, inappropriate, brilliant, and supportive.  I still think of him, what he would say and how he would react to the new realities emerging in his absense.

This is the surprising thing, the way loss is its own dynamic secretive thing.  It can emerge from the thinnest of memories and take hold, pulling you back into the void of the person no matter how much time and space you have but between them and you, no matter how many relationships and memories you layer over the old treasures.

I see his name, and I cry.