Day 1262 | Almost too many to count / Still alive

Just a quick note to say hi / still alive. 

I know strangers find my blog from "stage 3C triple negative breast cancer" or "supraclavicular node triple negative breast cancer" (because people email me questions). When I was diagnosed, I'd find blogs that would just suddenly end... and would always assume the worst. So, in writing much less frequently, want to check in for those reading this from the beginning .

Just had my 3.5 year checkup through telehealth. No symptoms, so no need for worry. 

I'll have a mammogram in June, COVID-19-pending... I need a port flush around the same time. (Yes, I still have my port). Desmoids are still terrorizing my left leg, so I may need a surgery or two this summer too. .... but - I'll take quiet breast cancer everydayoftheweek. 

That's all for me now. Big hugs. xx

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.

--

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.  

—

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. 

Day 422 | Still kicking

Wanted to check in and let everyone know I’m doing okay.

I know that 90% of the readers will know I am okay because they are my friends, family, or acquaintances who have supported me in real life and on the interwebs.

But for 10% of readers, who are other stage 3s, other  TNBCers, looking for hope or support or medical updates, it’s helpful to know that other people have lived. Have thrived. Have moved past c*ncer.

Whenever I came across a blog (and ... especially on initial diagnosis, I read a lot), if there hadn’t been a recent check in, I’d always assume the worst.

Things are looking up for me. My hand / foot syndrome isn’t bad. I still get some little blisters on my feet. (Hot yoga this morning prolly didn’t help ;). Little cuts on my fingers. But, like I say about all temporary side effects - small potatoes if LIFE is on the table.

I go whole hours not thinking about the c*ncer now. I am working full time, mommying full time, and wifing in between. (Poor P gets whatever is left of me after those two things). We are traveling a lot. Weekend trips in the US. Fancy dinners. Laid back breakfasts. Family. Short international trips. Many grandparent visits. Trying to make the most out of every moment and not stress about making the most out of every moment. Trying to maintain normal and enjoy feeling normal. Looking less like a cancer patient helps.

Well, until next time. Yolo, or whatever the kids are saying 

Day 364 | (Almost) One Year

Happy One Year.

It was a year ago (less a day) that I had the biopsy where the doctor said, “I’m still hopeful (that it’s not), but I really think this is cancer.”

In many ways, this year felt like a week; in other ways, a lifetime. I can barely remember my life before this. A time when going to the doctor was an exception to the week instead of a feeling of complete normalcy. A time when the constant worry of tomorrow wasn’t present. A time … before cancer.

I’m so happy to have made it one year, but in many ways, I’m stuck …

• Between a place of celebration, for making it this far, and mourning, of what my life was (or could have been) pre-cancer.
• Between a sense of hope and fear, both for what the future could bring.
• Between thankfulness, for seeing how amazing my ‘village’ is, and sadness, for needing cancer to understand it.

In the spirit of juxtaposition, joining the c-community has been weirdly wonderful. I have made friends around the world going through a similar story. You see the best side of it – the eight year celebrations, the chemo babies thriving, the what’s-now-four-years-and-should-have-been-six-weeks stories; and the worst, the scan-xiety, how every ache and pain is the cancer coming back, the stage IV diagnoses, the families left behind…

Mostly, I just want to tell everyone how thankful I am. Thankful I am that they were there for me. Whether it was post-surgery, when every surface in my house was covered in flowers or yesterday, when a friend texted to see how I was doing. I am just thankful! 

• Thankful for the after-chemo-packages, when two special groups of friends – my soritiory sisters and DC book club – sent me packages, forever lightening my ‘chemo Wednesday’ dread.
• Thankful for the stories and the cards and the prayers.
• Thankful for one of our family friends, who sent me a card every week through the darkest hours, with stories of hopes, with prayers, and well wishes.

      (And the everies.)

• Thankful for my family, who took me to breakfast every chemo before getting stuck 18 times and filled with poison.
• Thankful for my husband, for forever wiping my tears, holding my hand, and being stronger than I have ever been.
• Thankful for our little boy, who is (mostly) healthy and (mostly) happy.
• Thankful for my sister Elise, for taking on my fears, without minimizing them.
• Thankful for my inlaws, for their prayers, visits, and love.
• Thankful for Holly/Lesli/DL/DD/Paula, for being our extra family here in Columbus.
• Thankful for my Aunt Therese, for making the United Columbus flight in for chemos.my hospital stay.our wedding.Baby G. (and much more).
• Thankful the rest of my family, for lightening our load.
• Thankful for every.second I can forget about the cancer.
• Thankful that my workplace has been so amazing through all of this.
• Thankful for HAIR returning.
• Thankful for everyone just checks in on us. Sends a text. Asks how we are. Doesn’t dwell on the cancer. Makes us feel NORMAL, during a period of anything but.
• Thankful for all the G-loving, for everyone that welcomed our JOY in a period of despair.

Thanks to all of you. For being there, for reading, and for ALL the well wishes. They are always appreciated and felt deeply. We couldn't get through this without you.

Day 336 | Hand Foot Syndrome

Oral chemo is 25% finished today. And overall, going okay. The biggest side effects are “life altering” stomach issues and Hand Foot Syndrome - where your hands and feet blister, peel, hurt, turn red, etc.

Ways to minimize the issue - Vitamin E has shown to help, 40% urea cream, socks on all the time, and (cancer cure all) - aquaphor. 

I’ve done all of those, but last weekend - it felt like little blisters were forming around my feet. 

Today, they are more pronounced. I’ve been really trying to wear socks and do the rest of the “could help” things. Here’s hoping no large issues so that I can finish on time. 

Only positive I saw saw that Hand Foot Syndrome is tied to overall survival in a positive way for me.

Until next time ♥️ 

Day 312 | 101 Appointments

In cutting off my wristband after PT* today, I wondered...how many appointments have there been? 

Today marks appointment 101 for 2017. That doesn't include my 6 days of inpatient stay. Or appointments from my "regular" OB (heyyyy Dr. Hackett). Or appoints for G. Or the NICU. Or you know...giving birth. 

It also doesn't include anything for 2016 - diagnosis or surgery. 

It does include 33 radiations, 16 chemos, high risk OB scans, and countless appointments. About 25 hours a week at the doctor while I was out on short term disability.

That's a whole lot of wristbands. Glad I didn't start a collection early on - scrap booking cancer seems really weird to me.

PS - Oral chemo is going well. Nothing major to report yet. 

* I am losing sensation in my right hand because of cording around the median nerve. Cording started because of scar tissue buildup after 4 adriamycins / 4 cytocans / and 4 taxols to the arm. 

Day 300 | Last chemo-less day for 169

Starting Xeloda | Oral Chemo

Today's my last chemo-less day for the next 169 days. 

Well, that's sort of true. With Xeloda, oral chemo, the next stop on the cancer train...it's two weeks "on" (actively taking pills), one week "off" (allowing your body to recover) x 8 cycles. 

So, I'll be in treatment for the next 169 days.

It will take me to 15 March if everything goes well. I'm assuming there will be some sort of delay, so I'm mentally preparing to be in treatment until April.

Last night, we had a Last Supper, with champagne, beef wellington, cheesy cauliflower, potatoes, chocolate covered berries, and lemon tarte. 

Return of Hair!

As you can see, my hair is returning. It feels pretty nice to not have a constant breeze up there. =)

End of Radiation

The wound team at work (and my Google-loving husband) helped me treat my neck wounds. They are mostly healed now. It's amazing the difference (the bottom picture isn't even the worst of it).

On Radiation, I never had fatigue. Just burns. and Just on my neck. So, even though the treatment has been daily, it feels like I've been on cancer-acation. It'll be a bummer to head back to treatment tomorrow. 

More on X

Xeloda details here. It can take the 5 year survival rate for TNBC from 70ish% to 80ish% (info here). It IS chemo, but it's taken through a pill. If I handle the pill, I need to wash my hands immediately and SHOULD NOT touch G. Because, chemo = poison. Even in a pill.

I will take four pills in the morning. Four at night. Both should be with food. You should not drink on oral chemo (as it is processed by your liver). 

Known side effects:

• Hand/foot pain/blistering in 75-85% of patients
• Diarrhea
• Mouth sores
• Vomiting 
• Reduced appetite

Important to note that it shouldn't impact my counts as much as IV chemo, which is good because my WBC still is hovering around 2, which (according to my care team), "is not surprising given the levels and length of time I had chemo."

So, in summary, Xeloda or "X" doesn't sound swell, but if it's 169 days for the rest of my life, I'd do it every.time. 

Day 286 | "Those Women"

Suddenly, I am one of "those women".

Women I looked at sheepishly in the waiting room. Wondering if I'd be one of them - with their hair regrowing. Women who looked strong and healthy...not weak and bald - how I felt through most of chemo.

Though I'm here (at the oncologist) today to discuss the next part in my plan - six months of oral chemo - I feel a renewed sense of hope that I may be one of the women here in few years, with longer hair....giving others hope that they will join the hairclub again.

I can't believe how time moves. The 286 days between 12.02.16 (my diagnosis day) and today feels in some ways like 286 weeks, and in others .... like 286 seconds.

Today, I am stronger, though slightly more burned, than when I last saw my oncologist. 

Today, ....

- I have a healthy four month old, instead of a swelling belly. 

- I have more rising hope than rising fear. (I still have fear, but it's less allconsuming). 

- I'm still happily coupled (oh, and yah, and now, we're all married and stuff). 

- I still have a rock strong foundation - one of the best support systems I've seen. 

- I'm back at work, worrying about normal things - like spreadsheets, daycare, and ....did I leave money for the cleaning ladies? (No, but really, did I?) 

Cancer worry isn't gone. I still use my sick passport more than my healthy one.* I still see doctors more than friends. I still ache for a day when cancer worry doesn't bog down my mind on an otherwise idle Tuesday. 

But, now, I think that day could be a possibility.

I think it could be soon when I forget about the cancer...for an hour. A day. A week .... well, actually, I can't imagine a time when I'll forget about the cancer for a week. 

For now, I'll take the downshift from being a full time patient to part time. Allowing me to spend time and mental energy doing other mundane things....Like worrying about paying the cleaning ladies.

Today, I signed up to be a mentor to other women going through this cancery hell. I can coach them, like others before me coached me (looking at you - KACM crew.)

So - Here we go. 6 more radiations and 6 months of xeloda (oral chemo) - in a trade for hopefully the rest of my life.

*From Susan Sontag's Illness as a Methaphor, "Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place."

Wow! - Hair!! Eyebrows!! & Lashes!! (and radiation burns)

Day 267 | Radiation & Back to Sick-ish

Busy Living

Sorry that I’ve been not blogging. I’ve been busy living.

Since about three weeks after the end of chemo, I have felt moderately normal. Though my WBC counts weren’t really rebounding, my RBC was almost normal. For the first time in a long time, I didn’t feel awful. I could grocery shop without needing a rest. I still needed to avoid germs, but I could go in public without fear of immediate illness. I started to imagine what a life could be like post-cancer.

I returned to work at the end of July. It felt nice to have familiar parts of my brain click. My husband and I celebrated his birthday (early) and my aunt’s birthday (on time) in Vegas over 08.11. We’ve been taking care of Georgie, who for the most part, is a dream baby. He’s almost 17 pounds at 3.5 months (a far cry from his little preemie birthweight). Until last week, he was sleeping through the night. I’ve been working out. 

I’ve been …. just … living.

Radiation Overview

I started radiation on August 7^th. Every.morning.for 33 business days*, I get radiated. My treatment plan "one of the hardest" they have ever constructed because of my “interesting” rib anatomy (basically going in a bit more than most people’s ribs) and “perky” breasts (no joke, highfive to my husband?). As a result, they have me doing a technique deep breath hold, where I have to hold my breath as long as possible to be radiated. They are also doing IMRT, which is … “Intensity-modulated radiation therapy (IMRT) is an advanced mode of high-precision radiotherapy that uses computer-controlled linear accelerators to deliver precise radiation doses to a malignant tumor or specific areas within the tumor.”

IMRT is typically done when there is high levels of lymph involvement and usually means that the tumor’d breast is removed. (Mine is intact because of tumor location and size).

Daily Routine

Typical radiation appointments are 15 minutes. Due to the complex nature of IMRT + Deep Breath hold…. Each of my appointments was slated for an hour.

Strangely, I am an excellent breath holder. It’s a really weird thing to be good at, but the radiation nurses are consistently impressed, telling me I am the best breather they’ve ever had. Because of my A+ breathing, my appointments are usually 35 minutes.

The radiation dose to my heart is 350. Maximum is 500.

They are radiating pretty high – up my neck. I can feel the pain in my throat starting to creep up because of the radiation effect to my esophagus.

I am 45.45% finished (which I’ve rounded up to 46% mentally). Secondary effects (skin changes, sore throats, etc.) peak one week after the end of treatment. For me, that will be the last week of September.

I was really enjoying not feeling sick, it’s such a bummer that I can feel all the radiation effects settling in now – local pain, throat pain, tiredness (though that may have been my 4AM wakeup calls from my hungry baby).  

You can see the redness here:

Till next time, that's what's new.

*What is super weird about radiation is that it’s important enough to require daily treatment. What’s weird is that it’s only on business days.