Flight

Ten years ago yesterday I moved to London with my monolingual Spanish-speaking boyfriend, Sergio, and about $400 between us.  We each carried two duffle bags filled with clothes, a handful of family photos and mementos, my 35mm Canon camera, and his acrylic and oil paints. 

We decided to fly on the first anniversary of 9/11 because the flights were $300 cheaper than the day before or after, and it was about the right time anyway.  My classes at the London School of Hygiene and Tropical Medicine would start in ten days.  The school recommended seven days to find a furnished flat and we added an extra three to open a British bank account and cash my Rotary scholarship check in order to pay my tuition before orientation.  Ten days seemed tight to accomplish these tasks in a city neither of us had ever stepped foot in, but we couldn't arrive earlier because each day in London was costly. 

Flying on 9/11 did not put Sergio or I on edge, but it did everyone at the airport.  Passengers fumbled with their luggage, airline employees made keystroke errors when attempting seat assignments, and the security line was the longest I had ever seen. 

While waiting to check in, a local news crew worked down the nervous line interviewing people about their destinations and decision to fly on 9/11.  Soon they made their way to me.  Sergio, my parents and I quickly became the center of news attention.  They had found a story.  Not too many people move to London departing from our small Dane County airport.  And not too many parents 'allow' their twenty-three year old daughter to do so on 9/11 with a brown skinned man who does not speak English. 

At each security check point, the authorities padded down Sergio and thoroughly searched his carry on bag.  When they learned he did not speak English and we were traveling together, they questioned me about our backgrounds and travel intentions.  Sergio and I arrived in London exhausted and embarrassed for my country. 


Unable to handle our luggage on the hour long tube ride requiring three train changes, we spent £60 on a cab to Battersea Park where our weeklong room sublet awaited.  The cab dropped us off on the High Street, traffic horns blazing as we blocked traffic. We quickly hulked our luggage into a pile on the sidewalk and rung the doorbell of the flat.  No one answered.  I doubled checked the piece of paper with the address, we looked expectantly at the locked door and rung the bell again.  No one answered.  We sat on our luggage for a an hour, staring into space hoping the guy we had made arrangements with would show up at his flat and let us in.  No one came. By now it was noon, London time.  Sergio and I hadn't slept in over thirty hours.  We had about $300 (£180) left. 

We located a Travelodge three block away.  We took turns carrying the suitcases down the road, resting along the way because now our arms and backs ached and we were delirious.  Then five £20 notes just floated from my hands to those of the Travelodge clerk. 

Sergio closed the motel room window shades and ten hours later we awoke atop the covers, shoes still on, and limbs numb from lack of movement.  I drew open the shades and saw a different London.  High Street was aglow.  A pair of women in heels clicked along the sidewalk below.  One woman threw back her head and laughed.  An oncoming car's headlights illuminated her face for a moment. I looked back at Sergio and smiled.


That is how the best year of my life began.  The best year of my life until now.  

David and I finding eachother is just the beginning.  Have I got serious plans.

One chemo down

My Mom sat next to me at the UCSF chemo infusion center on Tuesday for for my first go around.  I knew why my chemo nurse was gowning up, putting on rubber gloves and a face mask before she hooked up first my bag of taxotere.  I also knew the steps that had occurred prior to the drugs being delivered to my chemo chair, as they call it.  I recalled from medical school that the hospital pharmacists, also gowned, gloved and masked, carefully prepared then loaded the chemotherapy medications into their plastic bags under a laboratory hood that vacuums away harmful fumes. Pharmacists and nurses take these measures because they are handling toxic poisons. 


Doesn't chemo look so simple here?

My Mom did not know this, why would anyone outside the medical world know this, so she asked my nurse about her gown, gloves and masks.  I went 'la la la' in my head during their conversation because in about 4 minutes that toxic taxotere was going to flood my veins.


My chemo nurse, Heather, could not have been better.  She exuded wit, light, compassion and appropriate obsessive-compulsive behaviors that are necessary for an oncology nurse to care for her patients safely.  She tripled checked every step and medication, then watched me like a hawk for any adverse reactions.  She knew when to tell a funny anecdote and when to leave me alone to watch "Blades of Glory" on David's iPad.  But best of all, she did not dole out platitudes or condolences.  Instead when various depressing things came up throughout our 4 hours together, she looked me in the eye and said, "Well, life is just absurd isn't it."  To this, I could whole-heartly agree.





see you at the martini mixer in 60 years

At the end of my chemo session she added, "My best friend and I tell each other that after this life, whatever happens next, we will sit together with a cigarette in one hand and a martini in the other and exclaim to one another, 'well what the heck was that all about!'", gesturing wildly with her hands.  She added, "Neither of us smoke or drink but you need the cigarette and martini to get the full affect, don't you think?" as she disconnected my last chemo bag and disposed of it in the large biohazard bin.   

 

Three additional thoughts on unexpected chemo side effects:

 

1. When you get a touch of poison oak on your ankle the weekend before starting chemo, it turns out the high potency steroid you have to pre-medicate with prior to your chemo to help prevent anaphylaxis is a nice two-fer.  No more itchy ankle!

 

2. When your car is side swiped while parked in front of your home the night before your first chemo, you don't care when you find your rear view mirror on your front porch.  Especially because your Dad is going to take care of the police report, insurance claim, and taking it in for repairs.  And what do you say to Geico when they tell you about the $500 deductible?  Ha!  That is nothing compared to what you paid to get your eggs extracted and frozen at UCSF three weeks ago.  Take it Geico!

 

3. When you wake up from another 4 hour afternoon slumber in the days following chemo you find you have unexpectedly re-written David Bowie's Space Oddity song that starts "Ground Control to Major Tom" to "Poison Control to Dr. Les" and all the lyrics thereafter, while in your sleep. Unfortunately your saline filled breast expander slows you down just enough to not reach your bedside pen and paper to jot down the new, fleeting lyrics as you awaken.  Trust me they were good.

 

Final thought:

Dad, thanks for agreeing this print was unacceptable chemo waiting area artwork. 



iPhlop

A week and a half ago, I was climbing into bed and dropped my old flip phone to the ground when reaching for it to set an alarm.  Had it been the first, or even tenth time I had dropped this four year old phone, it might have weathered the plummet.  However it was the third time I had dropped it that day, and perhaps its five hundredth fifty first drop in its life time, so it split in two.   

In residency, I never just sat and talked on the phone, time was too precious.  I talked and did the dishes, talked and walked Luna along the creek path, talked and made my bed, and talked and sauteed damn kale and Swiss chard for dinner trying my best to keep cancer away. 

Two days later I was in a sour mood.  A few hours before I had a follow-up plastic surgery appointment at UCSF. I had another 100mL of saline injected into my breast expander, a part of the reconstruction process.  The breast expander is a thick plastic bag with a quarter sized rubber port on the front and a quarter sized magnetic disc opposite the port against my chest wall.  My plastic surgeon uses a magnetic pendulum to locate the port beneath my skin so he can stick the needle for saline injections into the port rather than accidentally bust a whole into the plastic bag-like expander. 

From a scientific perspective, the whole contraption is quite clever.  From a patient's perspective, it feels like a water balloon is blowing up my chest wall.  It is not painful, but it is a lot of pressure and stretching that becomes more acute once I am standing and using my right arm.  The expander is wedged between layers of my pectoralis muscle so when I use that muscle, which we use for most upper body movements, I feel it in my new pseudo water balloon breast.  That expansion plus car sickness in the traffic jam on the ride back to Santa Rosa from San Francisco led to my less than pleased mood on my arrival home.

David said, "You know when you go to the dentist as a kid you get a sticker or lollipop as a reward.  I think that when you are an adult with cancer and you get 100cc of saline injected into your chest wall you get an iPhone."

One hour later, David and I walked out of AT&T with an iPhone in a durable rubber casing typically purchased by construction workers because it can protect the phone from a three story fall. Perhaps the phone can survive living with me. 

I walked to the car thinking, there are some pretty great perks to being an adult.  I also thought, there are also some perks to the urgency created by not having a functional phone in our phone-ccentric world and also having your best friends gently coax you toward smartphone ownership for the last 18 months.  Lynne and Katie carefully collected dry kindling, my phone breaking in half provided the match, and the 100mL of saline was the lighter fluid that together lit the fire under my bum required for me to step into the 21st century. 

Look forward to future posts with action shots and video. 

36 hours

Update on the last 36 hours:

Texas Egg Hunt. I am Miss Pink Pants.
Andrea is Miss Lavender Pants. 

Yesterday Dr.Rosen eggstracted 22 eggs from my ovaries.  This is an eggcellent quantity by any of my doctors' standards.  They will be carefully frozen, then 'Egg Hoteled' at UCSF for the forseeable future.  The procedure went well with minimal pain afterwards.  It was only the anesthesia that made me eggstravagantly goofy and sleepy the rest of the day.



Today my Mom and I met with Dr. Melisko, my UCSF medical oncologist.  David was so irritated he could not miss work to be there. Dr. Melikso spent an extraordinary amount of time with us.  The UCSF Breast Tumor Board put in lots of thought and meticulous evaluation and re-evaluation of my clinical story and tumor biology.  They unequivically decided:

1. I am Her2 negative.  May tumor was tricky and if I had been Her2 positive I would be having a totally different treatment regimen so a lot hinged on this aspect of my tumor biology.  UCSF really went to town clarifying this.

2. I will have four cycles of chemotherapy (taxotere and cytoxan), each three weeks apart. Chemo will start sometime the week of Sept. 3rd. 

3. This next part we already new but to recap, after the chemo, they will give me monthly injections to turn off my ovaries, making me menopausal, and I will take 5 years of an Aromatase Inhibitor.  This drug blocks the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. This means that less, if any, estrogen is available to stimulate the growth of estrogen receptor positive breast cancer cells that might be lurking somewhere after chemo or to help prevent my normal breast cells that for some genetic reason 'want' to turn cancerous, from doing so.


My eggs have been frozen once before.

4. I will likely get to take a break from the Aromatase Inhibitor two years after starting it, to unfreeze some of my eggs and have a baby with David. 

5. To be clear, I am not going to die from this cancer.  I just need a lot of treatment so that it never comes back.  Take that cancer!



Gross Anatomy

So it turns out when you have cancer for the second time, are recovering from a mastectomy, getting used to a partially filled expander wedged between layers of your pectoralis muscle, injecting yourself with three fertility medications a night, you are so bloated you can't button, let alone zip, your jeans or bend over comfortably without risk of ovarian torsion, and your estradiol level is 1,715 pg/mL, that from time to time, you may not feel like yourself, let's say you might even feel irritable. 

Yesterday when this wave of irritability engulfed me, David said I had every right to feel that way and then suggested that I break something. 

I replied, "I already broke our glass pitcher last night when I was trying to do the dishes!"

He responded, "I don't think breaking something by accident yesterday really counts."

Instead I did aggressive one-armed yard work that did not involve bending over.  I squatted to pick up stuffed innards of destroyed dog toys and plucked every dead leaf off every rose bush and vegetable plant in our yard. 

The wave of irritability washed away and I went back to just feeling bloated with a sore chest, meaning feeling quite excellent.  Over the past two weeks I decided to set a new baseline for my body.  Otherwise you just classify yourself as feeling not good everyday and that is depressing and also, quite dull.



This is a big week. 

David is going back to full time work after his summer break from Vocational Skills Tutoring at Santa Rosa Junior College for young adults with intellectual disabilities.  He has been teaching the summer cross country course for the past couple weeks but now he is going back to doing both jobs at the same time.   Our original plan for our mutual summer break was to rent a small RV and drive up to Canada with our dogs.  Obviously this didn't happen but we made the best of it and managed to have lots of laughs during this ordeal.  There is entertainment everywhere.  David has been skilled at always helping me see it, or in many cases, making the entertainment.  Thanks David.

Today, the UCSF breast tumor board is meeting to discuss my case and come to a collective recommendation about the rest of my cancer treatment.  I thought about whether or not I should attend to listen in, a privilege often offered to doctor-patients, but I decided not to.  I want them to be frank with eachother.  For the non-medical foks reading this: see the picture to the right to see what a tumor board meeting looks like.  I recall as a medical student having no idea what the heck a tumor board was when I was told to show up at one and do a 20 minute patient presentation in front of 15 doctors who are national experts in their field during my first week of clinical rotations.  Although at the time I was less than pleased with the task I was assigned, tumor boards are actually a fantastic enterprise.  Cancer pathologists (doctors who looks at tissue samples and cells under the microscope and actually diagnose and describe the qualities of the cancer) and a whole team of medical, surgical, and radiation oncologists meet and review all imaging, tissue slides, and the medical history of a patient with a complex cancer situation.  They discuss various treatment options in detail and come to a consensus.  I am grateful they are providing me with this service and am curious what they will recommend.  One part of my treatment, shutting down my ovaries and taking anti-estrogen treatment for a total of five years, is a slam dunk.  However I anticipate that another aspect of my treatment, traditional chemotherapy or not, and if so, what agents and for how long, is going to be controversial and a heated discussion. 

Tuesday morning I get my eggs harvested at UCSF.  The other medical term for this procedure is "egg retrieval," which I dislike because it infers the eggs are not actually mine.  I am sticking with "egg harvest" for now but Lynne and I are brainstorming a better term.  Please email with suggestions. 

Wednesday morning I will meet with my UCSF medical oncologist to hear what transpired at Monday's tumor board meeting.

Per WI Katie's recommendation, after this double whammy, I will reward myself by seeing the new Will Ferrell movie, The Campaign.  I would rather go on a vacation to Bali, but the whole egg harvest thing was pricey, even with the UCSF cancer discount.  Will Ferrell is a close second.  He is reliably hilarious.  Bali will have to wait.

A final note:
I have the best friends, family, and colleagues in the world.  Thanks for your emails, cards, meals, thoughtful gifts and unending love and healing energy you have sent my way.  You continue to make a big difference in my well-being.  Thank you!

Drain

I really enjoy this cartoon schematic for the following:

a. the woman seems quite content with her mastectomy.
b. she is wearing make-up
c. she appears to be wearing her Jackson-Pratt drains as hip waste accessories.
I will no longer be accessorizing with my two JP drains because I got the last one pulled yesterday at UCSF! Every task seems so easy to complete now. I want to run around the block flapping my arms. 

Maybe next week.

Let The Fertility Preservation Games Begin!

Days before the world turned their attention to the Olympic games in London, I turned my attention to my upcoming fertility preservation.  When I was diagnosed with breast cancer again in June at age 33, every doctor and surgeon I saw named what was already on my mind upon diagnosis:  let's get your eggs harvested, pronto.

No, I do not have six-pack abs. I am not particularly good at any sport.  I can not be found on any Citibank commercial.  However I have a few things in common with this year's Olympic athletes.
 
1.  Training:  I completed training where I had to focus intensely on medicine preparation, storage and administration.  Just as McKayla Maroney on the vault, the consequence of error or miscalculation in my prescribed routine would be costly.  Not in medals or physical injuries, but rather an unsuccessful egg harvest (and incidentally $10,000). 

2.  Hydration: Once I start the medications, I have to drink lots of water to make sure my eggs are as healthy as possible at harvest time and to help prevent a complication called Ovarian Hyperstimulation Syndrome.  Although the Olympic Coca-cola commercials depict athletes consuming a cold Coke after practice, I am fairly certain that they too will be consuming large amounts of water just as I. 

3. Attention:  Thousands packed Old Trafford stadium to watch the US Women's soccer team play Korea DPR with particular interest in star Abby Wambach's moves.  Eight to nine people's attention are dead set on my ovaries.  Perhaps a slightly smaller number than for Abby, but these eight to nine people are really devoted, invested fans.  I do not recommend getting between potential future grandparents and my ovaries in question.

4. Sponsorship:  You might notice that Roger Federer is sponsored by Nike.  Instead of wearing his own country's jersey like his teammate Wawrinka in their doubles match against Japan, he wore Nike emblemed everything.  My ovarian stimulation is sponsored by the Livestrong Foundation.  They are paying for about $3,500 worth of the fertility drugs currently in my possession.  I am grateful.  I plan to purchase this Livestrong onesie for David and my baby down the road.  Incidentally, this baby will also be sponsored by Nike, just as Federer.  No pressure, future baby.

5. Coaching: Behind every Olympian is a hard working, meticulous, caring coach. Behind my fertility preservation are Audra Katz, RN and Mitch Rosen, MD.  They are the two-person UCSF Fertility Preservation Center serving young adults with cancer.  They do the same work as a reproductive endocrinology team but with the added twist of squeezing in appointments, ultrasounds, treatments, and egg harvesting between cancer diagnosis and the start of fertility-threatening cancer treatment.  They have a legacy of previous patient success stories, they contemplate their clinical recommendations with care and enthusiasm, they highlight the positive, they provide clear instruction so I can have my best chance at future pregnancy, they understand what is at stake, and they care about not just my ovaries, but the person who holds them, me.  Yep, I have all-star coaches.

Although our Olympians and I share a few struggles and support, our rewards differ.  My immediate reward is regaining a sense of control and hope in an otherwise out of control and depressing medical catastrophe.  But my gold medal will be holding our squealing baby, face and hands covered with mashed peas after David and my attempt to feed our little rascal, all before the Rio 2016 Olympic games.