My Story

I thought maybe I should provide an ongoing timeline of events, both for those who are new to my story and so that I can keep all the details straight in my head.  So here goes:

August, 2014  I had a back tooth pulled a few days before school started.  No big deal, just had to wait for it to heal and then the dentist would put a partial in.

October, 2014  I was suffering with a canker sore on my tongue that was stubbornly hanging on.  Too busy to do anything about it, I just kept putting medicine on it and hoping it would go away.  It didn't.

November 24, 2014  My husband had a dentist appointment, so I tagged along so I could have him check the now incredibly painful canker sore.  Dentist took one look and referred me to an oral surgeon.

November 25, 2014  Met with the oral surgeon who said we needed to do a biopsy immediately.  We did.  It hurt.  A lot.

November 27, 2014  The rest of the family went up to Santa Monica for Thanksgiving dinner.  I stayed home, eating mashed sweet potatoes and soup.  I was anxious to get the results of the biopsy.

December 2, 2014  Received a phone call from the oral surgeon's office saying that he wanted to speak with me but he was in surgery and would I be around in a few hours.  Called Steve and my mom and brother, rallying my troops.  I knew it wasn't going to be good news.  Surgeon called at 4:30 and in the most gentle way possible, told me what I already knew.  Cancer of the tongue.  Specifically, squamous cell carcinoma.  It was in every cell that he had taken.  I was numb. 

December 3, 2014  Thanks to an influential family friend who arranged it with a quick phone call, I got in to see a prominent ENT at Kaiser.  He confirmed the diagnosis and told me I would need surgery and radiation, possibly chemotherapy as well.  He sent me for blood tests and and a chest x-ray with more tests to follow.

December 4, 2014  Stitches in my tongue came out and I could eat again.  Began a time affectionately known as the Tour de Food.  I was determined to taste everything I could, while I still could.  Decided to stop doing research on line because I was freaking myself out.

December 5, 2014  Had a CT scan with contrast.  Continued the Tour.

December 9, 2014  First appointment with my surgeon.  He did a very thorough examination, reviewed my test results, and began laying out a plan. Scheduled more tests and picked a surgery date a few weeks away.  Calmed my nerves but not my fears.  Kept repeating that he needed to treat me pretty aggressively because of my young age.  Fell in love because he called me young.

December 17, 2014  Appointments with surgeon and plastic surgeon who would do my reconstruction.  Had a PET scan.  Still terrified.

December 18, 2014  Cut off my hair and added a "power purple" streak in the front, per my daughter's request.  Fell in love with my new short hair and wondered why I hadn't cut it before.

December 20-21, 2014  Celebrated Chanukah with both sides of the family and lots of friends.  Celebrated the little one's third birthday and upsherin (first haircut) a few weeks early, as I would be in the hospital on the actual day.

December 22, 2014  Appointment with the Tumor Board, a group of doctors who reviewed my case and concurred that my surgeon had come up with an appropriate treatment plan.

December 23, 2014  Surgery day.  Checked in at 6 a.m.  Beyond terrified.  Surgery lasted 11 hours, during which they:
  • performed a removed the front third of the left side of my tongue
  • reconstructed it using a flap taken from my left arm
  • covered the flap with a skin graft taken from my left thigh
  • performed a radical neck dissection and removed 42 lymph nodes
  • inserted trach
  • placed feeding tube in nose, which would soon be replaced by one directly into my stomach
I was in ICU after my surgery for about 5 days.  I don't remember any of this time.  I have snippets of memory, most of them very unhappy.  Apparently, I was a little nutsy cuckoo.  Eventually I moved into the step down unit where I spent about 10 days.

January 4, 2015  Baby boy turned 3.  Sad, sad mommy in the hospital.

January 6, 2015  Finally, finally released from the hospital after 15 days.  Returning home was emotional and painful and very, very difficult.  But I was home!

January 8, 2015  Appointment with surgeon to get pathology results.  Tumor he removed from my tongue was Stage 4.  He felt like he got really good margins around the tumor.  One lymph node showed involvement, that was graded Stage 1.  Reiterated need to treat me aggressively.  Sent me home to digest all the information and recover so I could start radiation. 

Recovery was slow and difficult and messy and gross.  And painful and uncomfortable and just generally pretty awful.  It took me a while to figure out how to manage getting all my nutrition from a tube.  I had doctor's appointments every ten days or so to check and change all my dressings.  The swelling in my tongue did not decrease at a rate fast enough for me or my doctors, so I was scheduled for another surgery

March 19, 2015  Debulking surgery.  Easy peasy lemon squeezy.  Released the next day feeling good.  Tongue was significantly smaller than it had been for months.  Recovery from this surgery significantly easier than the first.

March 26, 2015  Appointment with my surgeon who gave me permission to slowly begin introducing real food back into my diet.  Ate my first bite in three months.  It was heavenly.

April 7, 2015  Another appointment with my radiation oncologist. Recovery was significant enough that I could begin the radiation process.  Scheduled appointment with dentist who made my fluoride guard and cleared me for radiation.

April 20, 2015  Mask making appointment, otherwise known as the beginning of the torture.  First time I had my head bolted to the table while my radiation mask was fitted.  It was horrible.

May 1, 2015  Radiation plan in place, time for a practice run.  Mask on and bolted down, wheeled into the machine, but no actual radiation.  Still horrible.

May 7, 2015  Radiation begins for real.  Requires antianxiety meds for every visit.  Radiation continues for six weeks, Monday through Friday, for 30 sessions.

May 14, 2015  Day 6 of radiation.  Started feeling side effects.  Taste buds no longer tasting.  Huge bummer.  Tongue beginning to swell, so eating became huge work with no reward.  Went back to using feeding tube for all feedings.

June 18, 2015  Last day of radiation.  Got a certificate and everything.  Last week of radiation was pretty rough.

I spent the next 8-10 days holed up in my bedroom.  The first two weeks post radiation were absolutely brutal.  Swelling and secretions so bad I was back to being fairly nonverbal for parts of the day because talking was so uncomfortable.

July 10-12, 2015  Made it to my dancer's recital.  Was my first reentry into real life.  Overdid it a little, but we all expected that.

July 22, 2015   First post radiation appointment with surgeon.  Scoped me to find that there is still significant swelling around my vocal cords and base of my tongue, so the trach stays put.  Referred me to radiology for a swallow study and for an evaluation so I can begin speech therapy.  Explained that the radiation will stay in my system for 12 weeks, so to be careful and take it easy (easy is a relative term!) until then.  After September 18, I will have a CT scan and a PET scan to determine if there is any cancer left in my body.

July 30, 2015  I am very slowly returning to my pre-cancer life.  I am learning to take things a little easier and to do things in small chunks of time.  Trying to be patient, which is incredibly difficult for me.  Looking forward to starting speech therapy.

So now the timeline is up to date.  I will update it periodically, as the need arises.

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