Crazy to have survivor's guilt when I have cancer. But I do. In the waiting room at the Moores Cancer Center, when I see other patients who have lost hair, I feel something. I am afraid to feel gratitude. Certainly don't want to feel pity. So I feel guilt instead. The safe, self sacrificing emotion to feel. Survivor’s guilt. Stupid? Natural? Self defensive? Self defeating? What then, should I feel? Thankful. Gratitude, really. Selfish emotions they may be, but real, and a lot more positively helpful for my own being.

So the tan is coming along nicely. Radiation therapy is almost over. Life has pretty much returned to normal. Rather, the lost fat has returned, like it or not. The surge has ebbed. Alert levels back to normal. No real symptoms from the radiation except a slight obvious redness in the area, the tan.  Those zaps only last about 30 seconds each, done on 2 sides. 3 weeks of 'regular' therapy, then 1 week of 'boost' to only the area where lumpy once called home. I had felt nauseous once, a few minutes after the zaps, but the doctor said it could have been caused by my breathing movement and the beam could have singed my liver. Otherwise, no fatigue, and I’ve only used the calendula cream twice. Too sticky. A week from now, I’ll start on the tamoxifen pills as recommended.

I can’t end this without extending my gratitude to all family and friends who have expressed support via prayers, novenas, texts, emails, cards, meals, calls, thoughts, chats, company, foodie partners in crime, and travel partners in crime. And apologies to family and friends who have not been told any of this. I suppose I wanted to keep it under wraps where possible. No reason to cause unnecessary alarm or make the news. I guess I share that Amish trait described by Kevin Kelly.

The end is in sight.

The end of this breast cancer journey with lumpy. It appears to have been a blip, a road bump as a friend called it, and it will soon pass. My wake up call appears to have been delivered by a soft jingle, not a clanging of cymbals. The residual evidence will eventually simply be a couple of scars on my breast and armpit. It is currently still a giant black patch on my right breast, and it still feels numb and hard from the surgery. Apparently it will remain numb this way forever.

The oncotype genomic test result on lumpy, at number 16, revealed that I'm at low risk of having lumpy's undetected cells elsewhere in me.  18 would have been mid range, over 40 would have been alarmingly high. So, those random aches here and there are not cancer cells partying, at least not lumpy's. This knowledge should keep my inner hypochondriac in check.

Next steps, get the daily radiation therapy over with, and then get on that Tamoxifen course for the next 5 years. My dear husband is bracing himself for PMS days ahead. If the past is a good predictor, it should be extremely manageable. I may just need to build-in more quiet time to listen to the ADD chatter and scribble them away in Pandora’s pages.

Warnings about various side effects of Tamoxifen should be my daily reminder. 

The stand outs: blood clots, stroke, depression, weight gain, thinning hair. Just peachy ain’t it. My hair is already thinning, thank you very much.

So, what can I do next to keep my risks low, without taking away all reasons to live in the first place? The oncologist said he does not believe in any food restrictions. I am free to eat! I will however refrain from extremes...most of the time! A few resources that should help keep my head level:

http://www.breastcancer.org/tips/nutrition/healthy_eat/plan

Article to scare one off high-fructose corn syrup soda.

http://www.breastcancer.org/tips/nutrition/healthy_eat/what_happens

No more reusing plastic water bottles. 

http://www.breastcancer.org/risk/factors/plastic

I am the 33%.

Apparently, statistics show that one in three people will get cancer. Welcome to the club. A part of me has always wondered or suspected, due to some family history. It’s still an earthquake when it hits. “Pleasant” is still not an adjective to describe the moment.

But, at least, I now have more information. Stage 1A. I’m supposed to feel a certain way upon receiving my grade. Gratitude that it was not higher is one. Curiosity about the next step is another. Dr. Google has already informed me of possible next steps. And so has my fellow Star Wars-fan surgeon Dr. B. Next step, meet the oncologist, radiation oncologist, and at my request, genetic services to see if it was my genes or external factors including luck of the draw.

Meantime, I seem to have recovered reasonably quickly after the surgery. Did a 2.5 hour hike 8 days after. Not as fast or long as we had done before, but not bad at all. A good workout. Dr. B did not want to hear of it. I should have been following doctor’s orders to take it easy. I beg to differ. I suppose I choose to have 33 percenters like Ananda Shankar Jayant as my role models. https://www.ted.com/talks/ananda_shankar_jayant_fights_cancer_with_a_dance?language=en

Have lost a little weight and am happy about it. Have tried to eat healthier and stay fitter. Implemented a few plant-based options into my diet gleaned from recommended books like A Cancer Battle Plan and Forks Over Knives cookbook.

A comment on A Cancer Battle Plan. It was a breath of hope and strength when I first read it. Proof, real living proof that we can heal ourselves, that we have some control. And then days later, a deflated balloon when I read about Anne’s death, of cancer. Still, arming ourselves with more information to make better decisions is a net positive. I am grateful to have this knowledge in my arsenal. 

Adios Lumpy! 

Good riddance. Lumpy can’t complain, they got to surf on Waikiki beach before being booted out of this world. Now, the wait to find out if accomplices exist.

The April 8th surgery and hospital care was exemplary, beyond whatever expectations I thought I had. Can't think of anything more they could have done to make me feel safe, calm, and as pain and discomfort-free as possible, all with a little touch of levity and humor.  “Think of it as a spa day” one nurse mused, as she put on pressure wraps around my calves that gently massaged me for hours. Told them how grateful I was to live in the year 2016. I cannot imagine the horrors poor pioneer patients years before had to endure so that best practices could be learnt and passed on to benefit me. I feel a strong urge to pay this forward. I could never be like the heroes before me, voluntary or involuntary ones, but I can at least chip-in a small contribution.

Note to blog - no X-Men powers after radioactive jab. No Spiderman tingling, and no clinging to walls. Bummer.

And if there is a next time, remember to ask for anti-nausea pills. No need to be a hero. Day-after was barfing day. Luckily a client showed up late and I could barf and tidy up before they arrived.

Three efficient March 10th appointments - with surgeon, breast care coordinator nurse, and volunteer who had breast cancer 22 years ago with a few freebies including little pillows for the car ride home after surgery. Decided with surgeon to take it one step at the time. Need to schedule surgery date in the next few days. Apparently they expect to have openings in about 2 to 3 weeks, or after week 4 to accommodate our little trip. Do the breast conservation surgery to remove lumpy and a few sentinel nodes to check for lumpy’s friends. Apparently I will be injected with radioactive material. I hope I remember to check if I have any X-Men powers then. Within 7 days after surgery, results will be out. That, will be the next tipping point.

Meantime, more inspiration from passionate pioneers.
On the clues Nature has left us, and the amazing normality of most of our 10 to 70 trillion cells:
https://www.ted.com/talks/mina_bissell_experiments_that_point_to_a_new_understanding_of_cancer?language=en

Could your medicine be a cell, not a pill?:
https://www.ted.com/talks/siddhartha_mukherjee_soon_we_ll_cure_diseases_with_a_cell_not_a_pill?language=en

I think mortality's reminder drew me to these, and nudged me to participate:
https://www.ted.com/talks/stephen_friend_the_hunt_for_unexpected_genetic_heroes?language=en

https://www.ted.com/talks/john_wilbanks_let_s_pool_our_medical_data?language=en

https://www.ted.com/talks/jay_bradner_open_source_cancer_research?language=en

http://resilienceproject.me/

http://sharethejourneyapp.org/ (if i get an iPhone)

Gallows humor. And lots of great practical advice.

http://www.butdoctorihatepink.com/

It’s just the waiting now. Waiting on the next medical appointment. The initial burst of curiosity and investigative impulses, in the age of google, can go pretty wild, cancerously wild. Seems like two obvious paths ahead. Best case, remove lumpy, check around and look for other suspects, finding none, declare safe zone, just return in 6 months. Worst case, lumpy has lots of friends and they are partying all over the place, making a huge mess. Massive clean up has to be ordered. The place is a fixer, it may even be a tear down. I doubt it’ll be a such a bad fixer it has to be labeled tear down. But we won’t know till during and after the surgery. And I won’t know about a date for the surgery until after March 10. And we are going to Hawaii on March 30th. I am not going to change the plans for Hawaii. Either case, it will make no difference. Either lumpy has no friends or it has friends, another couple of weeks will not make a huge difference.

Instead of friends, I should use the Borg analogy. Lumpy is a Borg ship. Makes for a more realistic metaphor because lumpy is not one entity, it’s a collective, bent on assimilating other living organisms into its gross mutated existence. A collective of parasites that have hitched a ride with me. And this humanoid does not mind being a vessel for other living beings on this journey exploring life. I am already hosting God knows millions of organism in and on me. But for a parasite to come crash our party and take it over, that’s not cool. We will not be taking it sitting down. We must destroy the Borg.

It was a good hike yesterday. A weekly workout to keep up the hiking muscles for the 6 peak challenge we’ve signed up for. My muscles were just fine, and the breathing regulated itself well. It was just will power that wavered. At 3 hours, it took longer than it usually does. Thoughts about the uncertainty ahead is energy sapping. I have stepped up my daily exercise routine. Built-in a few more minutes with weights. Also been pill-popping additional vitamins and supplements, and staying away from my beloved sweets. Preparing the troops for the battle ahead.

There is something about familiarity.  One gets used to things as they are and one gets comfortable. I have lived with this body for 46 years now, I’m used to it, I even like it most days. Jokes about my tiny breasts don’t make me cringe. I like my tight fit looking little boobs. They make me look athletic, I think. So that’s my self image, an athlete, though I’m not really one anymore. A nature lover too. One who likes few things more than being out there and feeling the freedom and belonging of being one with nature, whether that was with windsurfing then or hiking now. I am not totally comfortable with add-ons, accessories and fussy extras. I have to take off all add-ons, including the wedding ring, when I go to bed. I hate wearing bras. I see them only as a necessary nuisance to be socially acceptable. Can’t have those tits showing. Would have been great if the bra burning feminists managed to turn that fad into a boring norm. So why then do I get emotional at the thought of losing a breast or two? Wouldn’t that solve the bra problem? Wouldn’t that lead to a whole new level of freedom? How much worse would the emotional weakness have been if I had a different self image? One of a sexy, cleavage-showing lady in CFM stilettos. I can’t imagine. It’s a self-defensive thought. It’s all relative. The Keep Calm and Carry On sticker stares me in the face.

TED talks, the perfect companion on the exercise bike. Love those nuggets on cosmology, dark matter, Higgs boson discovery, creativity, understanding, etc., but I had never sought out talks about cancer, until now.

Foodie that I am, this grabbed me: Can we eat to starve cancer. Oh yeah! https://www.ted.com/talks/william_li?language=en

Here, she’s asking questions like - why don’t we hear about cancer in the heart or in the muscles: http://www.ted.com/talks/eva_vertes_looks_to_the_future_of_medicine

He started training for a triathlon while undergoing chemo: My survival story -- what I learned from having cancer | Martin Inderbitzin https://www.youtube.com/watch?v=M5QBH3wDrQY

Claim your experience, don’t let it or others claim it for you. And oh by the way, get off that cross. (a woman after my own no-drama heart): https://www.ted.com/talks/debra_jarvis_yes_i_survived_cancer_but_that_doesn_t_define_me?language=en

Feeling the passion for potential discoveries out in space is like feeling the passion for a future limited only by our imagination. Cheers to the pioneers that have given another cancer statistic hope: 

https://www.ted.com/talks/david_agus_a_new_strategy_in_the_war_on_cancer?language=en

https://www.ted.com/talks/jorge_soto_the_future_of_early_cancer_detection?language=en

https://www.ted.com/talks/dean_ornish_says_your_genes_are_not_your_fate

I had never sought out images of breast cancer either, until now. Time to set certain expectations:

http://www.breastcancer.org/pictures

http://www.medicinenet.com/breast_cancer_pictures_slideshow/article.htm

Intro to lumpy:

http://www.breastcancer.org/symptoms/types/mucinous

http://www.breastcancer.org/pictures/types/dcis/idc

http://www.breastcancer.org/symptoms/types/idc/treatment/local

http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/breast_cancer_program/rare_tumors/mucinous_breast_cancer.html

http://www.medscape.com/viewarticle/714088

http://www.aboutcancer.com/breast_mucinous.htm

https://www.aacrfoundation.org/CancerTypes/Pages/default.aspx?utm_source=googlegr&utm_medium=searchad&utm_term=foundation&utm_content=cancertypes&utm_campaign=aboutcancer

http://www.cancerresearch.org/cancer-immunotherapy/impacting-all-cancers/breast-cancer?gclid=CjwKEAiAgeW2BRDDtKaTne77ghgSJACq2U4bAQ6vmP4m4PCBcKaED_VQCUsovCJtu2gsAyYmW3VflhoCJ5nw_wcB

Seems like there are thousands upon thousands of possibilities. Pros and cons of our fantastically evolved and endlessly complicated human body.

February 29 2016 - Lumpy leaped into my world.


First, a timeline:
Feb 8 - First contact.  Felt lumpy while reading in bed. The hand of mortality that reached over and slapped me.
Feb 9 – Got serious about calling the HMO to get that general check-up with my newly assigned doctor.
After Feb 9, before Feb 17 – Told my husband. Wasn’t sure if I should before seeing doctor, but I did. Also told my parents.
Feb 17 – Met with primary care doctor. Referred to breast care department.
Feb 26 – Mammogram and ultra sound to check lumpy out. Ultrasound showed normal looking tissue, no cause for alarm. Initial recommendation was to keep an eye on bump and come back in 6 months. In 6 months, we had permits to hike Yosemite. I did not want to be back here “in 6 months”. I had already cleared out my work day, was already there, get it over with, do the biopsy, now. Left the hospital feeling pretty optimistic. Lumpy looked normal, most likely nothing. Life goes on. I wrote a journal entry about the eye of a storm.
I found David Brooks’ TED talk about living for your resume or living for your eulogy. Ordered his book, The Social Animal. Quickened reading pace of Mindset, a timely recommendation by Bill Gates.
Feb 29 – Lumpy had a name – mucinous carcinoma. So that hand of mortality slapped me again, sharply. Cancer it was. When Dr. G, in full Droopy-dog voice, mumbled it out, I felt a sensation run down my spine. It was not a chill. More like a bunch of ants zipping down. Perhaps my chi zipping to the core to regroup. I was sitting alone in my car, just about to leave a business stop.
Life goes on. Meals with friends, upcoming trips, business duties, class exams, volunteer commitments, loving support from family, irreverent demands from kitties, etc. Next appointment is March 10 to meet the surgeon.
Mar 3 – Thoughts about starting this blog drifted in during chi kung. I had only been able to articulate 2 reasons to tell anyone else about lumpy – 1) sympathy card, and 2) a living statistic (good or bad). Both unappealing, hence the silence beyond my closest need-to-know family. But what changed. Thoughts on education, on mortality and immortality, on giving back, on carrying on, on productivity, on rationality, on pros and cons, on privacy, on record keeping, on tracking progress, on tracking decisions. Anonymously, this is quite possible. It may help.