Find the continuation of the story at ReallyMichelle.com.
Author: MichelleM
9 days until my last infusion
9 days until my last infusion. Had I felt compelled to write yesterday, I would be saying double digits. 9 days left until my last infusion.
It’s been two months since I visited this blog and for good reason. I’m doing my best to reclaim my life. I cannot wait to fully reclaim it. I have a lot to do. I had so much taken from me in the past year and a half that I feel I need to spend the next few years trying to make that up.
As I get closer to the last treatment, I’m anxious but ready. I visualize what it’s going to feel like when I leave Tor Court on June 17. I visualize myself feeling sad more than any other feeling. The kind of sadness that’s nice and not overwhelming. The kind of sadness that moves you. That kind of sadness created within the space of reflection. A good sadness. Not be confused with bittersweet – that’s something different. This is sadness. I’m sad what I’ve had to endure for the past year and a half. What my body, psyche, and entire self have had to endure. A sadness for the Michelle’s who are being diagnosed as I’m writing this here.
It’s absolutely incredible it’s almost over. I’m almost done. What’s also awesome is that two days after my last infusion, I go on vacation for an entire week. I haven’t had a really great vacation in over 2 years. That was not planned. I thought treatment would be done mid-May but that delay with my heart postponed everything 6 weeks.
Also, my absolute last treatment is the exact date of my 30th Birthday.
That’s amazing. It’s perfect. It’s everything. Meant to be, I believe. I’ve discovered a whole lot about myself this past year and a half. This has been a tremendous experience and oh yeah, I found out I got my NED. No Evidence of Disease. Getting the stamp of NED is huge. Apparently I got it after radiation and forgot to ask. So, yeah, the NED is mine!
Some challenges I face in the coming months:
– My mother and sister believe they are going to get breast cancer. Trying to calm them down is exhausting and it’s getting worse as I get closer to the end of my treatment. Dr. Bayliss said cancer is ‘luck’ and ‘random’. Sure, there is a genetic component and having a family history doesn’t help, but cancer is ‘luck’ and ‘random’. Dr. Bayliss had Leukemia and is a very smart guy whom I trust.
– What does reclaiming my life look like? I have visions and want to make them all come true.
– How can I give back? I want to give back to the Berkshire Medical Center in some way.
– How can I keep this circle of healing energy with me outside of treatment? My energy field is for healing only. It is something I have envisioned around myself since my treatment plan was rolled out in front of me. No doom, no gloom, and no negativity has been allowed to enter my healing energy field.
– What can I do to make sure this doesn’t happen again? Now this is the scariest concept. I am predisposed to get cancer because of the kind of cancer I had. If I’m to have a reoccurrence, it will happen in the next 4.5 years. So. I don’t want to be a vegan, hippie, yoga lady but a piece of me wants to incorporate a very healthy lifestyle moving forward. So, I need to figure out how to be a vegan, hippie, yoga lady without being a full-fledged vegan, hippie, yoga lady.
How I feel about the next chapter: I’m alive. I’m here. Let’s do this!
Be Remarkable
In a group setting, I was told yesterday two piece of advice. The first was to Be Remarkable. And then I zoned off and have no idea what the second piece of advice was. True story. It happens when I’m caught off guard by a single word and can’t stop pushing the word around in my mind like rolling a large rock around in the mud.
Be Remarkable. Remarkable. That’s a pretty intense word and feels like its begging for praise. I like praise so I guess I can wrap myself around that. Be Remarkable. I’m remarkable, right? Can I be remarkable? Do people describe me as remarkable? I don’t feel remarkable. Wait, yes I do. I guess? I pulled the word around trying to figure it out like when you’re rolling your suitcase through the airport and going through a turn it takes one wheel before flipping onto its back. I remarked to the store clerk. I remark that I am remarkable. I am able of being remarked of. Unremarkable. Markable. Remark.
I couldn’t wait to Google it.
Well, it’s an adjective of course and means worthy of attention; striking.
It also means: extraordinary, exceptional, amazing, astonishing, marvelous, wonderful, sensational, stunning, incredible, unbelievable, phenomenal, outstanding, momentous, out of the ordinary, unusual, uncommon, unique, surprising, fantastic, terrific, tremendous, stupendous, awesome, wondrous.
Ok. That’s a whole heck of a lot of synonyms. All of them little treasures unto themselves.
Be Remarkable.
This statement came from a CEO with “Think Bigger” written on the walls of his office. Posters with messages like “Get Shit Done” were sitting inside frames and intermingled with a large 50″ tv reporting real-time Google Analytics of his website. There were open bowls of tortilla chips scattered on tables, succulents, a margarita mixer grinding in the background, and a large Rhodesian Ridgeback circling our group, occasionally leaning in on our legs for a butt scratch or head pat.
Be Amazing. Be Uncommon. Be Surprising. Be Awesome. Be Remarkable.
Cheers
I waited all day for the results at work. Tried to keep busy and figured the longer I waited, the better the news would be. 2pm. “There were cancerous cells in the tissue we biopsied and I’m sorry to tell you that you have Cancer.” It took weeks to digest what I’d been told.
Since that day I’ve had a mediport installed, 4 AC chemos, 4 Neulasta patches, 12 Taxol chemos, 10 Herceptin/Pertuzumab infusions (only 6 left!), 28 radiations and 1 tumor removal surgery. I’ve sat in chemo chairs for as long as 9 hours with no appointment dipping below the 3 hour mark. I’m looking forward to my last infusion which coincidentally is the exact date of my 30th Birthday. Talk about insane timing. It’s all insane, really.
With a year behind me I can honestly say it’s been the best year of my life. I will always practice something I was told in the very beginning: Keep Moving Forward. To me, that means surprising yourself, doing crazy shit, keeping it real, having things to look forward to, treating yourself with kindness and respect, and much more.
So, cheers to my one year anniversary of getting diagnosed with Stage 2 invasive breast cancer.
Cheers to being closer to finishing my treatment plan.
Cheers to all those who have survived.
Cheers to those will be diagnosed today, tomorrow, the next day, the next.
Cheers to the angels who lost their lives to this ugly monster, this terrible thing.
Vials of blood each time. Proof of life.
My mediport – I don’t know that I’ve shared a photo before? Finger for size.
Berkshire Festival of Women Writers
This past year keeping this blog has transformed me. I knew going into this that I didn’t want to hash out everything with a therapist so writing has been part of my therapy during this process. I’m able to let everything exist in a safe space. Make note of all my messy emotions and anxious thoughts. Share my life in photos.
I’ve been wanting to make everything I’ve been going through more public and have been thinking about writing a book about my experiences along with helpful information for young breast cancer patients in any level of treatment. Little, helpful tidbits I’ve collected along the way. How to draw in your eyebrows and what the best pencil is to do that. Lotions out there made for sensitive skin going through chemo and radiation. Everything from self care to getting in control of your treatment plan. Everything from fertility to body image to feelings. 7% of all breast cancer cases happen in women under 40. I was 28 when I was diagnosed – imagine those statistics. There aren’t a whole lot of resources out there for us. We’re not menopausal, have older children and jobs we’ve been at in length.
Anyway, I’ve been wanting to be more public about what I’ve been through the last year. I saw an opportunity through the Berkshire Festival of Women Writers. There were 17 of us who had all brought pieces to share (the writing prompt was Love in 500 words or less) with every writer in the room. We were young, older, everything in between. Single, married, divorced, widowed. We talked of similar themes: ocean, water, death, cancer, food, body image, relationships, future selves. Each person shared their pieces in a coffeehouse with oriental carpets on its floors. Words and stories from deep within everyone hanging in the air between us. I was trying desperately to hold it all together. I was quiet in my corner and feeling so fragile. I had come to share and wanted to but wasn’t sure I’d be able to make it through! All these women were so strong and clever and wise and beautiful. I couldn’t possibly be that. When I raised my hand to volunteer my piece I told myself to grow a set of balls while I second guessed myself at the same time. The attention shifted to me and I lost it. I crumpled and cried. Cried in front of a room of strangers, wept. Snot came out of my nose and I explained I’d never shared this kind of stuff before in such a public atmosphere. I told them how I’d read the piece once before coming here and cried in the middle of it. Now I was crying before I even started! Oh boy. Well, my voice waned through the entire piece but damn it felt great to just let it go. Let all this insanity of the past year flood the room and hit the walls of the coffeehouse with force. Open myself up and let these sharp stars drop out of my insides like guts from a butchered pig. Open myself up to these beautiful women in the room.
(I highly recommend attending Lean In events and partaking in the Berkshire Festival of Women Writers. Some classes are free!)
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Here is the piece I shared. The writing prompt was Love.
The Nugents and Murphys are sort of grandparents. My husband Pete and I are almost parents. Sitting inside a sparkly, silver frame on the bookshelf in the corner of my Mother-In-Law’s living room is the blown up microscopic capture of Pete and I’s 5-day old embryo. A white clump of cells that look like someone’s fresh spit on the ground. Like that foam off the ocean when it clings to the sand as the tide recedes. It is a life – our son, or daughter, or maybe identical twins frozen on a petri-dish for the next 5 years. In a cold chamber, neighbors with 9 of my eggs, held in a dark dusty vault at the Baystate Medical Center.
Ten months ago I injected myself daily, subcutaneously near my bellybutton, for two weeks with powerful in vitro fertilization drugs. The drugs stimulated my ovaries to produce as many eggs as possible. It was something I had to do if I wanted kids since I was weeks out from starting chemotherapy and fresh off a diagnosis of breast cancer. All the medical professionals told me my aggressive treatment plan over the next year would render me infertile. I was 28 years old. I produced 46 eggs which were all scraped out of me after those two weeks. Mis-shapen ones or ones that were too little to fertilize were discarded. Burned in some furnace deep underground at Baystate. Or maybe rinsed down a sink.
36 were either rendered useless or died except for one embryo and 9 eggs.
Can you love someone you’ve never met?
When Pete and I visit his parents, we also visit the framed picture of our future. It’s on display and difficult to understand if you don’t know the back story. Why would you keep a 4×6 of spit in your living room? Because it’s someone who when they arrive we’ll lean into them and tell them how long we’ve been waiting for them. Because it’s someone we love.
What if I had waited?
What if I had waited and let my tumor fester deep inside my breast? What if I hadn’t taken Pete’s advice to go get it checked out? Ignored the lump for fear of its repercussions of ruining our upcoming wedding plans. Ignored the lump for fear of its associated treatment plan ridding me of all my hair. Ignored the lump for fear of everything. I would have ignored it and did for a few months after finding it. In that time it already spread to two other places in my breast. What if I had waited and stayed silent and woke up at 40 with a death sentence? I was already diagnosed at Stage 2A. One lymph node away from Stage 3. One organ away from Stage 4.
Which reminds me, I have waited to long to talk about Pete and I’s wedding. It’s been 6 months since we exchanged vows that perfect day in August of last year. I’ll post about it soon.
When will it get better?
“Hi, how are you?”
“I’m alright.” I made eye contact and kept walking. Long strides. He was homeless.
After I’d taken a few steps he asked with a bit of a shout “when will it get better?”
I shrugged using my right arm for emphasis. I was holding 20 something dollars worth of food. Chips and guacamole. A chicken burrito. Key lime pie for dessert. Squeaking side by side in their Styrofoam containers. Rasping in their plastic bag. A particularly glutinous meal.
“Aww shit. Have a good one!”
“You too” I yelled back. An automatic response. I was uncomfortable. I felt wasteful. Here I am loaded up with homemade stone-ground blue corn chips and guac from a mom and pop in Atlanta. A delicious chicken burrito and a slice of key lime pie. Twenty something dollars worth of food this guy probably hasn’t had his mitts on in awhile based on his outfitted shopping cart. An outfitted shopping card covered in all kinds of things. Things to sleep. Things to protect him from the rain. Things to keep him warm. Things to keep him occupied. Cigarettes, newspapers, cans, lots of plastic bags.
He was my age. Maybe younger. Too smart to be homeless – a quick vibe I got off him from the earlier eye contact. Schizophrenic? Mental disorder? Drug addiction? Maybe just a normal guy whose life took a few wrong turns. Made a few bad choices. Bad influences. Or no influences at all.
On the walk back home I wondered what responses he’s gotten after asking that same When Will It Get Better question to everyone he passes. Does he get ignored? Does he get money handed to him? “It’s your lucky day, pal” and a folded $5 bill. “Right now, man, right now it gets a little better” and a regrettable $10 from a drunk person? Or maybe he gets the “Never, dude. Get a job you loser.”
It gets better when you make it better. We’re all our own better-ers. You want to be homeless? Guess what – you can. You want to be average? Guest what – you can. You want to be successful? Guest what – you can. You want to make your life better – you have that potential. Everyone has at least the capacity. Some have more steps than others. Some start at the top. Others, the bottom of the pack. We’re all dealt really shitty cards throughout our lives. We feel and process a lot of pain. Physical, emotional, slight, thunderous. Processing pain is what waters our little seeds and makes them sprout, grow, mature.
I wanted to give up my chips and guac. Thought about turning around and handing over my snack/appetizer/partial meal. I didn’t follow through. Tired? Shy? Embarrassed? Caught off guard? These were all feelings passing through me as I walked back to my $189 per night hotel room with four unnecessary pillows (two were fine, really, one was just fine), disposable shampoo, disposable conditioner, disposable body lotion, single size ground coffee packets, splenda, equal, white sugar and sugar in the raw, a couple coffee stirrers, you get the idea. Topped off with a view of downtown Atlanta from above.
I’ve had to be so selfish during this process. Sucking in all the good vibes and using them to rebuild the infrastructure of my life. Sucking away all of the strength of every good word, nice comment, compliment, moment.
I’m still thinking about that kid now and I’m sure I’ll still be obsessing until another memory fills the memory of him.
I swear it was like a movie.
Today was my last day of radiation and I got all nostalgic and sentimental: The locker room. The red front facing Johnny. The single ply tissues. I took it all in visually. The same line up as so many times before – lay back, scan, stay, stay, stay, scan, stay, stay, stay, itch!, don’t itch it, don’t move, aaand done. Something I’ve done now 28 times. This time, I asked my technicians to take a photo of me for this blog as if I were ready to have treatment. This is what it looks like:
Normally my arms would be out of the Johnny, my chest exposed, and I would be lifted on the chair about 6 feet in the air. See the lasers?
See, you now get to meet Big Green. A character I’ve been staring at for the past 6+ weeks.
My burns will get a bit worse before they get better. I was told I should be on the upswing before I know it. So, yes, cool, I’m looking forward to that.
Steroid cream I slather on a few times a day.
They’re going to be moved to the new radiation center inside of Tor Court on February 29 so I told them I’d visit before an infusion appointment (because after, Lord knows, I am a complete Zombie). I do want to see their new facility. They deserve it. They deserve to work in a clean, light, airy, new space. My radiation space wasn’t any of those things but hey, it did the job and that is that.
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7 infusions left… LETS DO THIS!
Big Green and some interesting facts I found
Big Green’s insides are 12 years old. I found out today after asking one of the radiation technicians. Big Green’s outsides are much older. You see, they replace his insides whenever he needs it but always keep his outer shell. They refurbish him as needed and some of him ends up overseas at other hospitals.
Side note: I never followed up with my Echocardiogram results. I’m fine. I’m back to “base” or 60% reading. I started back up with infusions.
I also found this interesting fact sheet about where I have been for the last year and where I will be until my infusions are over.
By the numbers …
Key statistics for Berkshire Health Systems’ new cancer facility in Pittsfield.
Cost: $30 million I believe it. It’s like walking into a spaceship.
Projected opening: 2014
Total square footage: 49,893 (current total is 18,781)
Infusion space: 11,170 square feet Huge. Beautiful.
Physician Practice: 9,836
Radiation Oncology: 14,240
Lobby: 2,106 Open. Airy. Soaring ceilings and amazing glass windows.
Lab: 2,204
Pharmacy: 2,182
Wellness: 8,100
Infusion chairs: 36 (including 2 to 3 private/isolation rooms) There are 3 private rooms.
Infusion chair space: 85- to 110 square feet (DPH standard is 80). I always choose the roommier 110 sq ft spaces.
Two radiation treatments left
I was cocky in the beginning. When asked how it was going, I’d laugh it off – ‘no big deal’ I’d say. I even called it ‘easy’. Ok. It is easier – in retrospect – of all the treatments I’ve been through in the last year. It at least started easier.
Have you ever been stung by a jelly fish? The sting. Or cut yourself when chopping a vegetable? The burn. Or clutched the Sun under your armpit? The pain.
All of the above are what radiation feels like. Sting. Burn. Pain.
When it feels better:
– When I’m at work not thinking about it. Typing on computers makes a nice L shape to my arms and they just stay in that position all day anyway. Different story as soon as I move.
– After I’ve applied the steroid cream and let it absorb a bit.
When it feels worse:
– At night shifting from sleeping on my left side to sleeping on my right. Or from right to left.
– When I’m applying the steroid cream to the area.
– When I think about it.
– When I touch the area.
– When I raise my arm over my head for radiation treatment.
– Putting clothes on.
– Taking clothes off.
– Moving around in general.
– Putting my purse on my left shoulder.
– Taking my purse off my left shoulder.
– Holding a grocery bag in my left hand.
– Putting on my winter boots.
– Tying my winter boots.
– Untying my winter boots.
– Taking off my winter boots.
– You get the idea.
This radiation burn will get worse before it gets better. (My surgery scar is healing nicely despite the fact it’s currently getting burnt to a crisp.)
I’m so excited to be done with this in two treatments. This Wednesday the 27th (exactly 11 months to the day I was diagnosed) at 8:16am, I will be free. (Total of 28 treatments!)
I am going to miss the technicians – I told them that they were an amazing way to start anyone’s day. I told them that everyone should start their day with interactions with people like them. They are positive, friendly, helpful, kind, genuine… Such good people. I mean for god sakes, they look at people’s junk all day long and line smelly hairy bodies up to lasers coming out of walls and ceilings. And still can smile and be cool about everything. They are Saints.
I’m also going to miss Big Green – my radiation machine I secretly named. He is a soft sage color. Big bulky old man machine who beeps and moves around my chest. The screws on him make him look like he has multiple eyes like on a fly. He’s slow but agile. And he doesn’t blink so he’s sort of creepy.
michellescancer 