Day 939 | 2.5 Years / Still Alive

Dear eDiary and the viewers at home,

It's been over half a year since my last post. In that time, I've probably changed 600 diapers, eaten 500 meals, taken 5 work trips, 5 fun trips, 25 trips to Maine, and had only 20 doctors appointments. Life post-cancer has many fewer appointments. 

In post-cancer news, I hit 2 years 7 months in three days. 

Cue the balloons...or so I thought.

I saw my oncologist earlier this week to commemorate the six month appointment mark - meaning 2.5 years since diagnosis. I was quite pleased with myself for making it this long. While I still can't use the word "survivor" for myself without air quotes (because I know the risk of recurrence is still around 35%).... I thought at 2.5 years - I'd get a little participation award. A small gold star pinned to my medical gown. A hushed golf clap from the audience watching at home. ...While maybe a whole ceiling of balloons wouldn't fall, I might get some some Kesha-style glitter trickling down from the ceiling when my oncologist said the words "two and a half years since diagnosis."

But - it didn't really go that way. Instead - the messaging was much more direct / somber. There'd be no glitter or balloons till five years. While I should celebrate every day, my risk wasn't materially different until five years. If we want to have another baby, which may not be possible because chemo is so hard on the eggos, we'll really need to weigh the potential risks of doing that - and every day closer to five years is better.

Maybe I fixated on 2.5 years because it seemed achievable, while five years was just too darn far away to seem real. Maybe I filled myself with extra hope (that I didn't really need anyway) because 1.5 years (almost) after ending chemo - it seems like c*ncer was in the rearview. Maybe I wanted to take down the air quotes around "survivor". Maybe I just wanted to feel normal again. But - for whatever reason I'd built up inflated hope, my 2.5 years fell flat - deflating rather than inspiring.  

More medically - they are monitoring a spot in my breast - I'll need to continue having that scanned every three months to ensure said spot hasn't grown. She also recommended full body scans in October, so if we decide to try for G2.0, I'll know if it's back before trying again. As we all know - cancer while pregnant isn't really great for anyone.

Sort of a ho hum cancer week and not happy (though not awful) news.

Desmoid Tumors: Some of you know this, but for those that don't - at my two year appointment, I had a new spot - on my femur - one that they didn't really think was breast cancer, but I needed to have biopsied. The biopsy showed another desmoid tumor. With three in a million odds, I really didn't think it was possible to have another weirdo disease. 

But - c'est la vie - it was. I have four tumors - one growing through my sciatic nerve, one the size of a softball on my femur, one wrapped around the hip joint, and a smaller satellite one hanging out in my bottom region (junk in my trunk!). 

Now - my walking is limited. I am in pain most of the time. The pain levels reach a 10 sometimes. 

There are a few potential paths for remediation - regular meds (failed on me); radiation; oral chemo indefinitely; surgery with a 50% recurrence risk; cryoablation - which is googleable, but a little gross looking, so will spare pictures here - basically, freezing the tumors in place; and high intensity focused ultrasound (HIFU).

I went to SFO to see a superspecial specialist. He recommended cryoablation, which I'll have done on 7.12 at Mass Gen. Hopefully I'll get pain relief and kill the tumors.

In summary, though I have only had 20 doctors appointments, they've all been pretty action packed. If you pray / hope / send good thoughts to the air...please continue to send them out because 2.5 more years seems really far away. 

Day 739 | Still Alive / Two+ Years

Made it to the two year mark on 12.02.18. Nothing significant to report except that I am still alive and well.

If all continues to be well (knock on all the wood and metal for safety)....I'll PET again next summer. 

Recurrence risk is highest from two to two and a half years, so will need to watch for lumps / bumps / etc. Risk starts to drop shortly thereafter, slumping after year three, and falling off a cliff after year five.

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On the "watching lumps and bumps" note - I found an m&m sized lump under my collar bone a few weeks ago. I thought it may be subclavicular nodes. 

  I waited the requisite two weeks. Then, contacted my onco who had me come in the day after contacting them. 

  They did a physical examination and said there were a few spots that were troubling and sent me to ultrasound. 

  The tech cleared me. Negative for cancer. Most likely tissue changes from extensive radiation.

  PTL.

--

So, that's it from me. Two years and a week post-cancer stuff, still alive - doing my thing - momming, designing houses, strategizing, hoping that I can keep on posting about milestones.

Day 672 | Survivor

Breast cancer fact(ish) on Day Four of my second Pinktober of being a “cancer girl.” I struggle with being called a “survivor.”

I know that I am one of the first of my peers to feel the personal pain of a wound drain. Feel the chemo in my veins. Shave my head. Have months of low white count. Of masks and hand sanitizer. Low hemoglobin and panting. Of radiation burns on my skin.

I know unfortunately I won’t be the last peer to be a “cancer girl”, but I am hopeful that treatment options advance more quickly than my friends / family age. That they won’t experience the carpet bombing of chemo. That targeted therapies allow them to live longer with fewer side effects.

This morning - I spent an hour talking to a friend who is a "survivor", recently out of treatment. I called him - he seemed down. His treatment recently ended. I told him it got harder for me when things got quiet. When you’re “in it” - you’re a “fighter” (though I agree the cancer vocab has got to change - that's how I felt). You’re actively doing things to kill the cancer.

When treatment stops. When it all gets quiet - you’re able to reflect ... You see the storm fading in the rearview, but you also see how close it got. The damage it caused. Stuff you didn’t notice when you were “in it”. You see your friends that didn’t make it through. And you’re worried another storm may be near.

You’re not sure quite how you made it. Not sure if you can weather another storm, but you can hear the tornado sirens in the distance. You know it could come back at any moment.

Then - despite the fear - at some point post-treatment - real life creeps back in. After so much rain - you’re not sure how you didn’t drown. But - you start to settle into your new norm. The kind that doesn’t involve 150 doctors’ appointments in a year. Where you’re not spending 10+ hours at “chemo days” anymore.

At first - after the storm - you were unflinching prioritizing living. “The dry cleaning can wait - let’s go for a walk.” Then, living almost becomes mundane again. You start to worry about normal stuff. Packed lunches. Laundry. ...Not that those tasks ever went away - they just got done through (a lot of help and) numbness - that it was getting done without really recognizing it happened.

And - you think you’re solid. You’re at a good place again where life feels normal.

But - a backache. A cough. A pain in the side...can all send you back to the scary part. The part where you have little control over what’s next and everything to lose.

So - you wait.  There is nothing else to do. You.just.wait. You monitor your body. Spend a lot of time with Dr. Google. Asking the other "cancer girls" you now call friends. Call your onco if something hurts. No - wait - you need to see if you have the pain for two full weeks, then call is back if it still hurts. “Still hurts?” “Sounds abnormal.” “High risk of recurrence.” Get a scan. And you wait again - for results. You pray so hard it’s nothing. Sigh relief if it is nothing.

I guess I am lucky. With TNBC, I have a brighter fire (higher risk of recurrence) for a shorter time. After five years, my risk of recurrence drops to around 1-2%.

Until then - it’s wait / pray / wait.

...but - I struggle to call myself a “survivor” because I am still in the wait / pray / wait mode. Hopefully - I can settle into that word like I have settled into the mundane-ness of life. Like doing laundry. Until then - it’s I will hang out in here cancer limbo. 

Day 574 | One year post-chemo

I ended IV chemo a year ago today. Nothing big or celebratory, but it's a small victory.


I'll take it on a day when I am being pummeled with moving stuff - new carpet measurements, how to dispose of our many moving boxes (Craigslist), and where the heck the box with our coats went - and trying to work a little to not drown upon my return.


(Worst PTO ever btw, moving).


Every day without pain, without a recurrence is a good one, though real life stuff still creeps up - I am happy today to be alive.

Day 557 | Goodbye House

On our last week together - ours with the house - I thought I would write a small summary of our time in the Columbus house. 

—

Dear house,

It’s been kind of a crazy two and a half years. I had no idea when I moved in here exactly what kind of crazy. 

I moved into a three bedroom house. Single. Newish to town. Unclear on what the future would hold. 

Sure - I hoped I would fill the house with children. I hoped that my future (currently unmet) husband and I wouldn’t move until we were ready to have number three. Which I’d hoped was five years away. 

In summary. There were a lot of hopes. 

Then I met P, we were so sure of each other that we had G fairly soon. Then, the lump. The pain that followed. The happiness from the smallest hands with big cries. The ups and downs - The healing that started here. 

The two years we spent here in Columbus could have been a blip. Could have been a nothing time. We could have never met. We could have fared much worse. 

A million more things could have happened differently - there so many “could haves” - but, I am pretty happy with my actuals, despite the crazy turns. 

So, this week we are moving together. Stronger than ever. Not with the three kids I imagined. But with a man better than I could have expected  (and the world’s cutest 13 month old). 

So, goodbye house with your beautiful floors and pink door. Goodbye Columbus. Thanks for being everything that we needed at exactly the right moment. 

Now - time for a new house to fill with new hopes. And hopefully a lifetime of memories there (or at least another two and a half years of memories before another move).

Day 446 | Measured in Love

446 days into this cancer stuff. 408 days since my first chemo. And now, only four weeks or 24 more days of xeloda. After 756 poison pills - That’s only 119 pills left before no more treatment. 

In the spirit of a month left - I am celebrating #smallvictories today. 

Remind me of that song...”Five hundred twenty five thousand six hundred minutes” ... how do you measure a year in the life. 

My could be in doctors appointments. In IV tubes. In hairs lost and regrow. In times I was woke to pick up G. Times I kissed P. Number of plane trips. Of hotel rooms. Of fancy dinner. Early bedtimes. Blog posts. Mouth sores. Bandaids on my fingers and toes. Champagnes finished. Cards received. But, like that song - all I can really remember so clearly is the love that this year showed me. 

To 24 more days on chemo. And a lifetime full of love. ♥️

Day 425 | I remember

When I was diagnosed, a friend said to me that I had always lead an extraordinary life. In thinking about that, I reflected on some things that I remembered. Inspired by another C friend of mine, here are some of the things I remember.  

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I remember long summer nights with daylight that seemed to stretch forever. Sunsets over the corn. Thunder storms from the porch. Hidden Easter baskets. Christmas Eve, full of food and music. Feeding what felt like the whole neighborhood. Reading piles of books, often by flashlight after bedtime. 

I remember laughing with Elise. Carrying Anne everywhere. 

I remember so many falls and stitches, always followed by Dairy Queen.

I remember family trips. Crab legs and sea shell searching. Playing cards. Trying to cheat (just a little) so grandma would scold us.  

I remember awkward teenaged years, comforted by countless hours at the Dube (a Columbus diner mainstay). Waitressing at Bob Evans. Working so hard. 

I remember going to Europe for the first time. How old everything seemed. How young I was. How old I felt. 

I remember our first night in the dorms, walking around campus. The August heat. Feeling nervous and newly free.

I remember studying in London and Luxembourg. Getting lost in Spain. Daylight at night in Norway. The leaning tower of Pisa. Cinque Terre. The Eiffel Tower. Travelling to Matisse in Nice. Eating mussels in Brussels. The wonders and horrors of Eastern Europe. Feeling so mature and cultured.

I remember countless nights on our quintessential campus. Long nights and early mornings. Too many classes. Too little time. Driving to Indiana to “get away”. Diet cokes and pink bubble gum. Nights spent at the student government office. Bell tower smoothies. Yoga every night. Graduating and feeling so old. 

I remember early lonely meals in Japan. What have I done? Where do I live? Finding friends. Feeling less alone. Biking. Buying cheap pineapple. Cooking tofu. Eating big cheese naan and cheap sushi. Drinking sake from small cups and beers from big cans. Night buses to other cities. Hanami - the best magnolia trees and cherry blossoms. Feeling strangely foreign and familiar at the same time.

I remember Hong Kong. Taiwan. South Korea. Industrial boat to mainland China. Sharing spots with livestock. The Great Wall. Terra Cotta warriors. Climbing Lake Taal. Vietnam. A bus over the border. Angkor Wat. Eating green curry in the Thai foothills. The colors and smells of India. Cheapest hotels and very best food.

I remember being an accountant. Loving my teams. Not enjoying the work. Applying to grad schools. Getting in. Deciding on Carnegie Mellon. 

I remember two weeks in Morocco. Camel rides into the Saharan sunset. Ferry to the south of Spain. Holy Week and funny hats. Road trip through Portugal. So many hills. Newly minted manual driver. Castles in clouds. 

I remember moving to Australia, with a long stopover in rainy New Zealand. Many classes. Interning in GIS. Waitressing, fancy food. Mexican hot chocolate. Gin and tonics and best Sauv Blancs of New Zealand summers. Camping through the South Island. “Was that a raccoon?” noises. Coming up from down under. Sneaking into Sri Lanka en route to Europe. 

I remember a new home in Italy. Strange, beautiful apartment. Bella, Bella, belissima. Cappuccino mornings. Nights nursing nigronis over pizza and pasta. 

I remember Hungary. Traveling through the Balkans. Soaking in Turkey. Camel rides through the pyramids. Almost touching the Sudanese border solo. 

I remember moving to the UK. Applying to the the UN. Somehow landing then interview. Somehow getting the internship. Moving to Germany. Banana beers. Bikes to work. Crowded house. Many languages. Late nights in my very own office. 

I remember coming back stateside. How shiny Pittsburgh felt. Having mom laugh that I wanted to bike everywhere. Tres hilly. Finding friends. Project in Liberia. Working too hard. 

I remember feeling newness fatigue. 

I remember our first DC apartment. Dance parties. Buying my first home. Feeling so old and mature. Making mortgage payments. Remodeling the kitchen. Takeout for a month out of a fridge in the living room. Sitting on the steps on a Sunday night. Best book club. Biking everywhere. Consulting. Loving the work and usually the teams. Too many PowerPoints. 

I remember feeling comfortable. 

I remember mom’s cancer. So many doctors that year. Our luck had to improve. 

I remember a month sabbatical through Nordics, Baltics, and Russia. Heavy food and light beer. So much walking.

I remember hiking the Inca trail. Altitude sickness. Stomach flu. The happiness of finally seeing Machu Picchu. Floating on reed islands. Buses to Bolivia. Almost getting stuck at the border without visas. The salt flats. So cold. So white. 

I remember needing a change. 

I remember moving back to Ohio. Loving the work and teams there. Surprised by how much. Meeting Paul for the first time. Charming. Fast friends. Feeling so comfortable and so challenged. New met old. Everything clicked. 

I remember so many weekend trips. Feeling in love. Feeing so right. Like nothing could go ever wrong. Everything clicked. 

I remember finding out it was a “him”. Feeling him kick. Telling Dad. Choosing “George”. Things still clicked. 

I remember the lump. Not normal, by probably not cancer. Warm washcloths. “It doesn’t hurt to check.” The clicking stopped. 

I remember the call. I saw the number. I knew the answer. I kept calm. Took the call in the stairwell. “Are you there? Do you understand?” Parents and P unavailable. Called Elise. Tears. Managed to drive home. P made beef stroganoff. E brought buster bars. 

I remember the first appointments. Putting on mascara so I seemed more human. Crying it off in black streaks. Triple negative. “Don’t Google. The news is bad.” “Surgery. Chemo. Radiation. Maybe more chemo.” Feeling way too young for this. 

I remember the surgery. Throwing up for hours upon waking. Having a drain. Hating it. P cleaning it for me. So carefully measuring the blood and liquid. Not showering. Cooking Christmas dinner ten days afterwards. Getting the drain removed for New Years in Las Vegas. Eating all the sushi. Going to Chicago for family and food. Doing a lot of both. 

I remember the love. The flowers. The packages. The cards. The messages. Not knowing how to say thank you. Knowing that it helped me survive the early days. 

I remember cutting off my hair. The first chemo. The steroids. Feeling sick. Losing my hair. Getting progressively sicker. Being hospitalized. Not feeling so bad to warrant the seriousness of the doctors. The visitors. Antibiotics. Being discharged. Feeling so low. 

I remember his heat beat. Seeing ultrasound of his sweet face. Him kicking through the treatments. Being afraid I wouldn’t be able to love him. His beautiful baby shower. 

I remember trying to savor the moments where I felt good. Taking advantage of the chemo breaks. Probably overdoing it. Without regrets.

I remember packing Paul’s truck in Boston. My water breaking on the highway. In Albany. At 36w. Too early. Unexpected. Googling a hospital - oops, a vet clinic. Finding St. Peter’s, with its loving NICU. Labor. Pain. Epidural. Pushing. Fetal heart distress. No, “sunny side up”. “Is he breathing?” Hold him for a moment before we take him to NICU. 

I remember feeling so strong and so weak after he was born. Helpless to his size, but so strong holding my tiny boy. 

I remember loving him.

I remember leaving the hospital. And all the neosure the truck could carry. The car ride home. Stopping to feed about 100x, while Paul work concall for eight hours.

I remember the sleepless nights. His tiny hands. His big cry. 

I remember having a port placed. Getting a PET scan. Finding another mass. Could be cancer. More oncologists. More biopsies. All clean. Still could be cancer. Feeling unsure. And later, relieved to hear it was very unlikely to be cancer. 

I remember a trip to Maine with mom and dad. Selling P’s house. Meeting all his friends. Liking them. The chaos of moving. George growing.

I remember the end of chemo. My sister’s wedding. Going back to work. Bald. The start of radiation. Being late a lot. The neck burns that just wouldn’t heal. A weekend trip before starting chemo again. George getting so big. 

I remember the blisters and cuts of Xeloda. The swelling. Hair returning. Feeling on the road to normal. George crawling. Pulling up. Eating solids. Liking fish best.

I remember so many vacations with our small family. Weekend getaways. England. Florida. Cleveland. New York. Cincinnati. Boston. Iceland. Nice hotels. Better food. Little wine. Making memories. 

I remember feeling like no matter what happens next, I am so happy for this thing called life. So happy to have experienced so much. To be a wife. And a mom. To have such an amazing family. To have seen so much of the great big world. There’s so much more I want to do, but I am grateful for what I have and the things I accomplished.