Colon Cancer Stage 3C N2. . .

. . . poorly differentiated adenocarcinoma, enteric type.  The carcinoma invades through muscularis into subserosal connective tissue.  There is lymphvascular space invasion present as well as perineural invasion.  The metastatic carcinoma is in 5 of 53 lymphnodes and extracapsular extension is present.  The carcinoma involves two lymph nodes by direct extension.  All surgical margins are negative for the tumor.

Yeah, that’s right, they’re talking about me.  I’ll put that all in English for us lay people.  The type of cancerous tumor (adenocarcinoma) is ugly and growing fast.  It grew into and out of the walls of the colon and into the lymphs and blood vessels.  The cancer was present in 10% of the lymph nodes harvested which puts me in a Node 2 (N2) classification.  The oncologist wants that to be 0-3%.  10% openly alarmed him.  The cancer was growing outside some of the nodes harvested, seemingly overtaking them (extracapsular extension). If nothing is done, the risk of it coming back in the next 5 years is 80%. The surgeon got all of the tumor cleanly out.

That was a flash forward. Let’s back up a bit and we’ll walk through my week. To start it off running first thing Monday my dad makes me an appointment with his financial firm to talk about my future and my plans for retirement. I’ve put this off FOREVER and decided that I really have no excuse to put it off any further.  What else do I have to do with my time than take care of business. . . financially, emotionally, physically, spiritually. So Monday is financial day with dad and after 3.5 hours of sitting in Ryan’s office I’ve set up a retirement portfolio that projects my retiring comfortably somewhere around 60 years old. It’s an odd experience as he places pages of graphs and statistics in front of me comparing the gain vs. risk of different combinations of stock and bond investments.  I knew all too soon that I would be sitting with the oncologist hearing those percentages again, but not about my finances. . . they’d be about my health.

Since the diagnosis, little “surprises” have been popping up left and right.  For example, my voice has not returned to normal but rather is high pitched and quiet, seemingly strained.  At 7:45 on Tuesday morning my sister and I head into an ear, nose and throat specialist (ENT) at St. Louis University Hospital to figure out what the heck is going on.  Two weeks after surgery and my voice has not returned to normal. . .I’m concerned. I sing every day for my job, it’s my secret weapon for classroom management and high morale.  “I hope they didn’t damage your vocal chords with the breathing tube”, says my brother-in-law.  Jastin, the doctor, sticks a noodle-sized camera down my nose and into my esophagus to check things out.  I get to watch the instant replay on the computer screen.  “Vocal chord paresis.” He says. My left vocal chord is barely moving so the vocal chords won’t fully close.  There’s a gap in between that allows air to escape, hence the soft and wispy voice. To couple my wispiness I choke on liquids while drinking if I’m not extra attentive as it can sneak down through said gap and catch me off guard! He says it should return to normal and gives it 2-18 months.  Thank a lot.

I come back to my sister’s house to eat some breakfast and drink the cup of coffee  I’m not suppose to because coffee is acidic and an acidic environment is a hostile one for healthy cells.  But it’s fair trade and organic and I stopped eating dairy so I figured I’m 1 for 2 and I should live a little.  I walk back to the Center for Advanced Medicine to do a follow up with Dr. Hunt, the surgeon.  He’s 1.5 hours late for the appointment, but that’s okay cause the only things on my agenda these days are meals and doctor visits so I can swing it.  I have written down 21 questions to ask him and am ready with pen in hand for his responses.  Some questions include:

1. I’ve had diarrhea since the 16th.  Is that a concern?
2. I’ve lost 7 pounds. Should we worry?
3. Are there any studies done on using chemo only if there are clinical signs of recurrence? What happens if we take a wait and see approach?
4. Are there any similar patient age/diagnosis to me?  How are they now?
5. Can I still teach?

Very calmly and quickly Dr. Hunt responds.

1. “That’s the day after I told you there was still cancer to be got.  The brain is powerful, eat more fiber.”
2. “Most patients lose 15-20 during the surgery process.  Eat more protein.”
3. “You want to get the cancer cells when they are seeds not weeds.  Don’t wait.”
   

   The scar is healing beautifully and swelling has gone down tremendously.

4. “Most people that come in with colon cancer are stage 4.  The main sign for colon cancer is anemia and most people put off the symptoms a lot longer than you did.  You were so fit and healthy coming in to surgery and your recovery has been remarkable.  You are ahead of schedule and have a better chance than any patient I’ve seen with stage 3.”
5. “Give it a try.”

It’s 1:30 and my mom and I walk to eat some lunch before the appointment with the oncologist at Siteman Cancer Center down south about 20 minutes.  At 3:30 we drive up to a brand new facility.  It smells like new furniture and paint with bad department store lighting that highlights every blemish and wrinkle and makes my eyes all red.  Mom, Dad, Katie and I squish into the room and Dr. Tan, unprovoked, goes into a spiel of how chemo needs to happen yesterday and this is why (for reasons explained above).  His Plan of Attack includes:

• Repeat CT scans after surgery to see what’s happening and use as a guide during chemo.
• obtain CEA (tumor marker for cancer cells) along with labs for Vitamin D, Iron and some other things I can’t remember.  (essentially drawing blood)
• Obtain Kras/Braf mutation (something to do with the genomic makeup of the tumor to guide future treatments)
• Obtain GPS (more genetic profiling to guide treatment)
• Port placement (putting in a semi-permanent port so all infusions and blood work can go in the same hole and I don’t have to get stuck with a needle every time)
• See about fertility (Wednesday’s task)
• Get a geneticist (to rule out, or rule in, genetic components)

The treatment: 6 months of chemotherapy given every 2 weeks.  The standard chemo for this colon cancer is Folfox4.  I’ll get CT scans at 3 months, 6 months, 1 year and every year for the next 5 years.  They’ll draw for CEA every month and I’ll get a colonoscopy at 1 year and every year after.

Side effects include but aren’t limited to, but also not binding to: sensitivity to cold, loss of taste, diarrhea, loss of appetite, fatigue. . . to be honest I haven’t done any research on what to expect. . . I figure I’ll deal with it when it comes.  Those particular things were offered so I took note.  It’s 5pm.  I think I’ve lost all color to my skin.  Can somebody pinch me?

Mom and I drive to a yin/meditation class at the local studio.  Ah! That’s better!

Not the entire arsenal, but close

Wednesday starts more slowly.  I have time to properly sit in a comfortable cross legged seat, close my eyes and breath deep, full breaths.  My sacred time. . . it’s a lot easier to turn off the “monkey mind” when I don’t really want to think about the present circumstances anyway. I sit in the hot midwestern morning sun and order some vitamins off the internet and talk to a friend on the phone.  Again I’m reminded of how my reality has changed so dramatically from what it was 5 weeks ago.

It’s the fertility doctor today. My sister and I walk the few blocks to 4444 Forest Park Parkway, Suite 3100.  Dr. Amber Cooper is a tall, confident woman with blonde hair and big eyes.  She’s smart, capable, caring.  I feel comfortable.  We are having a consultation.  More percentages and statistics. Do I need to harvest some of my eggs in the chance that chemotherapy will cause damage to my ovaries?  I’m 31.  I was born ready to be a mama.  This is a sensitive topic for me. The answer is yes.

Some big questions get answered. The radiation involved in CT scans will not effect my ovaries and uterus.  As of October 2012 storing eggs versus embryos has proven to be equally successful (thank goodness ’cause I’m single and I’ll be damned if some random guy is going to fertilize my babies!). Modern science is amazing and I realize in these moments what a cutting edge research facility Barnes Jewish and Washington University School of Medicine really are.  My eyes are wide, I’m trying desperately to hang in there, so much information, it’s about me, and my body, and my future that I can’t really hold very clearly because the present is so overwhelming. My mom’s sitting up strait on the edge of her seat, her eyes also wide and her head bobbing up and down in understanding like it does when I know she’s trying to hold it together.  Dr. Cooper points to a number on a gray piece of paper.  It’s the sum of the procedure.  My eyes fill with tears, I drop my head in my hands.  “I don’t want to do any of this anymore.”

This is positively the hardest race I’ve ever run.  The tears dry up, Dr. Cooper’s staff submits my paperwork to the LiveStrong Foundation to see if I qualify for a grant to get most of the procedure and some of the medications covered.  Walgreens pharmacy will pick up the rest since I’m a chemo patient.  I get my blood drawn twice this day along with my first ultrasound, which I find quite humorous.  My older sister and I are 13 months apart ane when I was younger I wanted to be just like her.  We sort of grew up like twins anyway, she got purple things and I got pink things.  Katie played the organ I church so I played the organ at church, Katie got horrible blue thick glasses so Suzi got horrible blue thick glasses, and so on and so forth. . . and now she’s pregnant with her first baby and getting ultrasounds. . . I’ll be damned if I get left out right?

Nurse Andrea comes in with an armload of syringes. . . it’s training time.  The goal, to grow my eggs at a very calculated rate so that at the exact moment Dr. Cooper orchestrates, some of my eggs are harvested and “frozen” until I need them again.  It’s sort of like insurance. . . I may not need them but if I do they’re waiting for me.  The silver lining of this whole thing though, is that if I don’t meet the man of my dreams until I’m 40, my eggs are still a spry 31 :)!

I hike up my trousers and take a deep breath as Andrea shows me how to load syringes and mix the medications and stick myself several times between the hours of 6 and 7 each night for 12 nights.  It’s Wednesday, I’ll begin tonight and return to the office on Saturday morning for a second ultrasound and more blood work to see how things are moving along.  There’s another medication (also a needle) that I will need to use to put off ovulation until the very moment when I use a fourth and larger needle (at the exact time they advice) which will culminate the egg growing and allow for maximum harvesting.  Or something like that.

On Wednesday night mom and I go to a yin flow class. I don’t want it to end.

Thursday is funk factor five thousand.  I do a momentary sob fest.  Knowing I will do this with grace with the fullest expression of my being doesn’t mean I don’t have moments of extreme and utter fatigue.  I’ve learned to allow those moments and understand that they too shall pass.

Friday morning, bright and early, I walk down to the Center for Advanced Medicine (doesn’t that sound important?!) to get my CT scan and blood work done for the oncologist.  An incredibly fantastic West African man is the lab tech. He invites me into “his office”, the CT scan room and asks how I am.  I say good and ask him how he is.  He gives me two thumbs up and lifts his leg, “Two thumbs up and a leg up!” he says with a huge grin.  He lays me down on the table and goes over to his controls, “Now where’s the eject button?” He asks teasingly.  He slowly moves the bed under the circular scanner and says something about being thirsty.  I was actually, I wasn’t suppose to drink anything before the CT scan.  So I said I am and he informs me that the IV fluid moves faster than water so I could have a drink.  He hands me a glass of water and I thank him.  “Anything for a friend” he says.  I pause and smile as I think about that. This man just met me.  What an amazing world we could live in if we all shared that sentiment.

Simultaneous to all of this I have been shopping for a car. I’ve got a beater of a Subaru Legacy back home and the last worry I need while teaching fourth grade and going through chemotherapy in the dead of the Alaskan winter is to deal with car troubles, so I allow myself the luxury of entertaining the idea of a newer and nicer car with a warranty so I don’t have to hassle with car problems as much. I don’t love tons of choices so I’ve limited myself to one very specific option.  A Subaru Impreza Wagon Hatchback.  I’ve test driven some cars, shopped online used and new, seen prices all over the country, compared, looked at auto loans, run some numbers and primed myself. Friday afternoon my mom and I drive 40 minutes west of the city to St. Peters to test drive this exact car.  It’s a 2012 with 23,000 miles, cold weather package (heated seats and other fun things), 7 year bumper to bumper warranty, red with black interior!  Sounds awesome!! My mantra as we’re heading to the dealership, “You are not driving away with this car, you are not driving away with this car.” Well, long story short, they met me, I met them. . . I drove away with a lightly used car for a very fair price.

So, now I can dream of coming home, back to the healing mountains of Alaska. A road trip is in store between treatments!  Another silver lining.

I’m starting chemo here and getting the ball rolling.  My ports going in on the 30th, my eggs should be harvested somewhere around the 1st and chemo will begin around the 3rd or 4th. Things are up in the air as far as my return to AK but there will be a return this summer!

I’ll be writing another post  as chemo gets closer to process how I’m feeling and what help I’ll need, emotionally and energetically and otherwise.  WE did an amazing job with the surgery.  My body is strong and gearing up for round two.  Thank you for all your calls, texts, emails, blog notes, thoughts, prayers, intentions, letters, packages and love.  No form of contact goes unnoticed, even if it I’m not able to respond. Every bit of reaching out is like a huge hug and always brings a smile to my lips.  So much love and gratitude, dear friends.  Thank you.