Started from the Bottom Now Weāre... A Little Bit Above the Bottom
Note to Readers: I wrote this on Sunday morning at 5:30a.m.Ā It captures one of the lowest moments I have felt throughout this whole experience and though I am feeling much better right now, and very much so looking forward to my surgery on Tuesday, I think itās important, when being open about this whole thing, to capture this snapshot of emotion.Ā I will warn you ahead of time that this is not a āfunā read. But it is honest. And I truly believe the sentiment at the end- this was very close to rock bottom for me, so Iām looking forward to the journey back up, beginning with my surgery in 5 days.Ā
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A couple of weeks ago, I reached a milestone I never thought would happen.Ā I finished chemo.Ā This milestone felt triumphant.Ā It felt miraculous.Ā I had successfully leaped this giant hurdle, with more ease than I ever expected.Ā Lucky was the word I kept using.Ā Lucky I had never gotten sick.Ā Lucky neuropathy had never taken hold.Ā Lucky my lifted fingernails had never fallen off.Ā Lucky my hair was starting to grow back.Ā Lucky that while still terrible, chemo had been so much easier for me than I knew it was for most.Ā
I rode this high into a wonderful celebratory night with some close friends.Ā What was meant to be a large BBQ outside was hindered by a rainstorm, relegated to the indoors, and made much smaller, and yet, I was still deliriously happy. I held onto that delirium from one thing to the next- a laughter filled game night at my parents' new home, a lovely, relaxing few days with my partnerās family, to a productive, incredibly normal feeling day back in the office.Ā Ā
As I prepared to continue riding that high into my long awaited āgirls weekendā with some friends who had all banded together to come in from out of town, I received a call.Ā It was the plastic surgery department calling to confirm my surgery date for June 22- a date that was three weeks earlier than the date I had in my calendar and that I had spent the last two months making plans around. I was confused, annoyed, and a little scared.Ā What had happened, I wondered?Ā I contacted my social worker via email to ask her, nicely of course, what the ever-loving f*** was happening.Ā She told me she would get to the bottom of it immediately.Ā I did my best to enter into my girls weekend undeterred from having the most fun ever, as was planned.Ā Ā
The next day, I received a call from my surgeon who walked me through why the date had changed, and the pros and cons to changing the date.Ā I wonāt get into the details but the most important point is, she said it was ultimately my decision on which date to keep, but from a cancer care perspective the earlier date was optimal.Ā This is not to say the later date would have been dangerous, just not-optimal, whatever that means.Ā I asked if I could have the weekend to think about it and she said of course.Ā I called my partner to discuss, and my mother.Ā I made a little pro/con list in my phone that I would let ruminate for the weekend.Ā And then I did my best, mostly successfully, to put this all in the back of my mind until Monday so I could enjoy my girls weekend as planned.Ā Ā
Ultimately, after what ended up being a wonderful, mostly cancer-thought-free weekend, with the help of my family, partner, social worker, and little pro/con list, I decided to move my surgery date up to the earlier date.Ā After all, my number one goal here is to be cancer-free.Ā Why would I not do everything I could to best ensure that result.Ā Somewhat begrudgingly, but confidently, I altered all my plans.Ā I informed work of my new surgery date which they wholeheartedly accepted and supported.Ā I cancelled my āstaycationā and other various plans I had made to enjoy my last free weekends before my procedure.Ā I went through the process of reworking my entire brain to accept that this was all happening much, much sooner than I had planned.Ā I found a way to become re-excited by my surgery and what it meant.Ā No more cancer in my body.Ā The light at the end of the tunnel was back and closer than ever.
One particularly hard pill to swallow with this closer date was that with my post-chemo energy climbing, I had been excited to start working out again, and start eating healthy again.Ā I had hoped in those 30+ days I might even lose some of the 5 pounds or so of the chemo weight I had gained.Ā I wanted to go into this surgery feeling powerful, strong, positive and healthy. With this newer surgery date I felt that this goal was still possible, I just had less time to accomplish it.Ā That was fine, I thought, after all, it wasnāt about the weight loss as much as it was about feeling good.Ā And I was determined to do my damndest to feel as good as possible with the time I had.Ā Ā Ā
I started working out every day.Ā Nothing crazy or overzealous I thought.Ā Some brief cardio, 30-45 minutes on the stationary bike.Ā Light weight lifts.Ā Beginner level stuff.Ā Enough to work up a minor sweat and push me a little.Ā But not to push too hard.Ā With the support of my partner I started eating well (emphasis well, not less).Ā More salads, more fruit, more water.Ā Less junk food.Ā I was meditating daily, which is something I have never done before.Ā I was feeling good, feeling empowered.Ā I had even lost 2 pounds, which was, frankly, just a bonus.Ā
I went into my plastic surgery pre-op appointment excited and nervous.Ā I was going to be able to ask all of my questions about the surgery, which I had written out ahead of time.Ā I was going to learn about how to care for my recovering body.Ā This appointment made this all seem so real. More so than it had before.Ā But I was happy about that.Ā I was shocked by how excited I was by the idea of a bilateral mastectomy.Ā Of course, still very scared, but excited, which made the fear more palatable.Ā
I donāt like to say things that are overly flattering of myself, but I like to think through this whole process I have remained fairly calm, undeterred, and strangely positive.Ā Not in a Pollyanna positive kind of way (as my mother would say), just optimistic about the outcome of all of this.Ā Optimism is not my natural mode, so I have worked very hard to do this.Ā That is not to say it hasnāt been hard.Ā Or course it has.Ā This has been the hardest thing I have ever done.Ā I have cried more these last few months than probably the last few years combined.Ā But I have remained, for the most part, positive.Ā Ā
This was how I felt walking into my plastics pre-op appointment.Ā My mother was with me for support.Ā She had been there with me for my first consult with plastics and oh boy, had I needed her.Ā When the sheer weight of everything had hit me once we started going over breast reconstruction, I had completely lost it.Ā She was there to support me and help lift up my voice when I could hardly speak.Ā I had not anticipated that would be necessary this time, but she was there as a precaution, and as an extra set of ears.Ā But it turned out I needed her more than ever.Ā When my plastic surgeon out of the blue suggested I consider having my mastectomy without reconstruction, take a few months to recover and lose 20 or so pounds, and then come back for my reconstruction later, I lost it completely.Ā We had already been over this two months prior.Ā We had addressed concerns about my weight and determined the surgery as is, mastectomy and reconstruction all in one, was doable, and the right procedure for me.Ā My weight had not changed since this conversation in March.Ā Nothing had.Ā So what the hell.Ā And when I say ālost itā I mean full, heaving, sobbing, hard to breathe tears.Ā I couldnāt think straight.Ā I wanted to vomit.Ā I wanted to throw something.Ā I wanted to scream.Ā We were two weeks out from surgery and here was this curveball that could change everything.Ā All my questions I had pre-prepared, all of my excitement went right out the window. Ā I remember my mother saying to the nurses, with a thinly veiled anger, āShe has been very stoic through all of this, but I think today you guys broke her.ā
The thing here I must make you all understand is that I am having a surgery I would never in a million years have elected to have if I did not have breast cancer and a genetic condition that gave me a 40% chance of getting breast cancer again.Ā I am having both my breasts removed, and reconstructed with tissue from my stomach.Ā Does the idea of that make you uncomfortable?Ā Yeah, me too.Ā I donāt want this.Ā I will never wanted this.Ā But I have accepted that this surgery is my best shot at having a normal life where I do not have to wake up every day in fear of my cancer returning.Ā And this particular surgery, a mastectomy and reconstruction all in one, with my own tissue, while much more intense in terms of both surgical time and recovery time, is the procedure that made this āchoiceā that wasnāt really a choice the most palatable.Ā I am not sugar coating to say I was excited. But when the option of doing the procedure the way I wanted was possibly being taken away from me it was all too much to handle.Ā My mother was right.Ā It broke me.
We left that appointment with more questions than answers.Ā Both of us dejected, angry, bordering on more tears to accompany the ones we had already shed.Ā After an emergency meeting with my social worker and much discussion (and more tears), and an analysis of the risks and benefits in front of me, I was done sacrificing my choices.Ā I had already sacrificed too much to this disease and I was done.Ā I was determined to stick with the procedure I had been planning for since March.Ā
So did this whole event take the wind a bit out of my sails? Yes.Ā It ruined everything just a little bit for me, and stands to make all of this a little bit harder.Ā All the same, after making my decision, I was determined to push forward,Ā I kept up the exercising, I had two more very productive days at the office and felt confident about my medical leave from my job.Ā Was I feeling as strong as before?Ā Not quite.Ā But I was feeling better.Ā And the weekend was approaching fast, which I was looking forward to.
I had plans for the weekend.Ā Nothing monumental.Ā Saturday, my partner and I had planned to go to the driving range at a local golf course.Ā This was a favorite activity of mine when I was younger. My uncle Billy, who died in 2019, used to take me to the driving range when I was a pre-teen/teen.Ā I was excited to give it a shot again and see if I still had it, or at least had my 14-year-old version of āitā.Ā Saturday also happened to be the two year anniversary of my Uncle Billyās death, which I had forgotten, but I wonder if subconsciously I remembered, as the coincidence is a bit too odd to ignore.Ā Then Sunday, we planned to go to the beach.Ā We were going to get there early, 8am for low tide, because one of our favorite activities is to explore tide pools.Ā This may seem juvenile, but the beach, and the tide pools bring me immense joy.Ā Though I only had two weekends before my surgery and a month long recovery, I was determined to make the most of them.Ā
However, my weekend plans, like my pre-surgery excitement, were perhaps too good to be true.Ā Saturday morning, before my day had really even started, I was bending over to put something in the compost when my back gave out and a sharp pain hit me in the center of my lower back.Ā I was stuck there crouched down, wondering if I could even stand.Ā With much pain I did stand, and suddenly realized I was in trouble.Ā I called out to Caleb with a bit of urgency, and when he came over, I said āSomething happened to my back, I donāt think I can walk.ā And I truly didnāt think I could.Ā He slowly walked me over to the couch where I was able to lay down, but not without excruciating pain.Ā And when I say excruciating, I mean it.Ā On the pain scale- the one that doctors always have with the little frowny faces I would say it was a 7.Ā Maybe a 6.Ā Maybe an 8.Ā Whatever it was, I can way with utmost certainty, I have never, in my entire life, felt this much pain.Ā Whenever I sat up- pain.Ā Whenever I stood- pain.Ā Whenever I took a step- pain.Ā This was make-you-want-to-vomit pain.Ā This was need-help-going-to-the-bathroom pain.Ā This was I-am-afraid-to-move-even-a-little pain.Ā I have hurt my back before.Ā But never, ever like this.Ā Ā
With my upcoming surgery I am restricted from taking blood thinning medication - so no ibuprofen, no aspirin.Ā I am also restricted from taking CBD, THC, and any marijuana products.Ā I tried acetaminophen.Ā I tried wet heat.Ā I tried dry heat.Ā I tried ice.Ā None of it seemed to really help.Ā We considered going to the emergency room but I wasnāt sure I could make it down our front stairs, let alone into a car.Ā Plus the idea of one single unnecessary second in a hospital, especially with a long hospital stay looming, was unpalatable. Finally, I called Dana Farber and spoke with the on-call physician, who, after confirming it was safe for me pre-surgery, prescribed me muscle relaxers.Ā Ā
Of course, a driving range trip was out of the question.Ā I cancelled dinner plans with a friend as well.Ā I felt little to no relief until 11pm, which allowed me to make it up the stairs and into bed.Ā The relief gave me a false sense of hope, thinking perhaps, by tomorrow, I will be better.Ā Maybe even better enough to go to the beach.Ā My one beach trip of the summer.Ā Thatās all I wanted.Ā I knew tidepools were out of the question.Ā But maybe I could at least put my feet in the sand, and smell the ocean water.Ā That seemed good enough.
As soon as I awoke on Sunday at 5:30am to take my next dose of pain meds and muscle relaxersĀ I knew it would never happen.Ā I had reverted back to my earlier pain levels.Ā I struggled to get out of bed, and required being literally held up to go to the bathroom. And I never went back to sleep after that.Ā I just sat there, taking in everything that was happening to me at that moment.Ā Taking stock of the ways my body felt like it was was failing me. Listing the things I had lost.Ā Obsessing on the disappointments.Ā Ā
I canāt quite find the words to express how it feels to be sitting awake, propped up against your headboard like a ragdoll at 5:30 am on a Sunday, crying, but trying to be silent so as not to wake your partner, who, after tirelessly caring for you, helping you walk to the bathroom all night, has finally been able to fall asleep.Ā Looking outside at the beautiful, cloudless blue sky, feeling the warmth of a perfect beach day seep in through the window screens, knowing I likely wonāt even make it out of the house let alone to the beach.Ā Ā
Rage.Ā White-hot rage is what I felt.Ā Not at anyone or anything.Ā I donāt even have a god to be mad at. Just life.Ā I was mad at life.Ā I was furious that my one weekend to enjoy, relax, and take my mind off of everything, even if just for a moment, had been taken from me, not even by cancer, but by some freak occurrence.Ā
In this moment, sitting there, silent tears streaming down my face, chest heaving with the sheer weight of just everything I realized there was one thing I could do- my one sedentary, legless outlet.Ā I could write.Ā Ā
So gingerly, I pushed myself out of bed and shuffled my way over to my work desk.Ā With the support of the desk I lowered myself onto the floor to reach for my personal laptop.Ā I opened it.Ā Dead.Ā I located the power cord under my desk, unplugged.Ā After several painful moments of reaching, I determined I wasnāt going to be able to reach the outlet.Ā No fear, I had a backup plan.Ā I reached up and grabbed my work laptop.Ā Power cord already plugged in- bingo.Ā I opened it, made my way into Google Docs and started typing.Ā I got five words in before a blue screen with a frowny face appeared.Ā Well, thank goodness I used Google Docs.Ā I rebooted and logged back in.Ā Another sentence.Ā Blue screen.Ā Frowny face.Ā I rebooted again.Ā And again.Ā And again.Ā At least six or seven times of this, all while that pit of rage stuck somewhere between my throat and my belly swirled painfully.Ā All I wanted in this one moment was an outlet- a chance to be able to write about my pain.Ā And I was even being denied that.Ā
As I rebooted, and rebooted, and rebooted, for the first time in a long time another word popped into my head which I had vowed to never use.
Unfair.
I hate the word unfair.Ā And I hate it in the context of my cancer diagnosis.Ā I was recently explaining this to a friend of mine.Ā Itās not that I so much hate other people using the word unfair to describe what is happening to me, or to describe something happening outside of my diagnosis, but I refuse to use it for myself.Ā I feel this way because I believe nothing about my life is unfair.Ā Yeah, I got cancer.Ā Yeah, I got cancer at 28.Ā But why not me?Ā So many people get cancer, what the hell makes me so special that it shouldnāt be me.Ā What about the little kids I see at Dana Farber any time Iām there, running around with their little chubby bald heads.Ā I got to be 28 before I had cancer- they didnāt.Ā Thatās unfair to them.Ā But not to me.Ā The word unfair scares me- because I truly believe once I begin to think that about my situation, about myself, about my current circumstances, I wonāt be able to come back from that.Ā I wonāt be able to escape unfair.Ā
Finally, as if sensing I was about to throw it against the wall, my laptop came to life and stayed that way.Ā And I wrote all of this, starting with āunfairā and working backwards. Working through all of the things that have happened in the last two weeks to bring me to that word.Ā
I have concluded that, still, none of this is unfair.Ā Am I pissed off? Yeah.Ā Exhausted?Ā Absolutely.Ā Angry. Sad. Scared. Humiliated. Humbled. Overwhelmed. Still in pain, as I sit here?Ā Unfortunately, yes. But I feel oddly⦠better. Actually, Iām kind of smiling now as I write this and I truly have no idea why.Ā Maybe at the absurdity of it all?Ā Maybe because I am feeling so many things right now, why not add amused.Ā
Iāve mentioned this before but dark humor is in my blood.Ā It came with the DNA that gave me the BRCA1 mutation that gave me breast cancer- ironic, huh? Or full circle- I canāt tell which. I am too tired and delirious from pain and lack of sleep to know the difference. That DNA also gave me my beautiful hair- which is making itās slow comeback.Ā My sense of humor. My taste in music.Ā My sense of travel and adventure.Ā My love for words.Ā It is half of who I am, and therefore a part of me I would never give up or change, because without it I would be someone else.Ā And most importantly, it gave me this gift, this outlet of writing, which has somehow, in the last two hours, healed quite a lot of pain.Ā Ā
That seems quite fair, does it not?
I donāt know when my back pain will subside.Ā I donāt know if it will have any effect on my surgery in a week and a half.Ā I donāt even know if I will make it to the beach before then.Ā But I do know that even with all of these uncertainties I feel compelled to write it down and share it with whoever feels compelled to read it.Ā Because it's important to me that I remember what this moment feels like.Ā Ā
Because you know what they say about rock bottom. Nowhere to go but up, baby.Ā









