step 1. Diagnosis

 

9/4

2020 has been quite the year. Beginning with a trip to Hawaii that gave us only one beach day to skin cancer surgery, to Covid quarantine to losing my dad in a way that left me with PTSD, I now approach another 2020 hurdle.  

I would say the symptoms began in March with the daily masking for covid.  I found myself taking advil cold and sinus daily to survive the constant nasal congestion and need to clear my throat. It advanced to difficulty blowing my nose and clearing my ears.   By July I was using hot packs. Treated for sinus infections twice, the face pain got more severe.  Upon return from our post Pops Loss pilgrimage to alaska I found myself making an appointment at Mass Eye and Ear with Dr Battacharyya.  I had conversations with a friend who told me how much better his sinuses were after sinus surgery so I went expecting an easy fix.   Little did I know.  

My symptoms to this point are nasal pressure.  Ear and right jaw pain, congestion that is unable to be cleared and facial numbness in my chin and right jaw.  

The appointment began with a hearing test that confirmed my hearing was normal but definitely decreased on the right showing pressure in the ear.  When I met with Dr B. He looked into my nose with a camera and told me I would need a cat scan.  He thought my adenoids were abnormally enlarged- a process not common in adults.  

You can see in the image below the blue is the tumor. Taking up 5x3x2cm of my nasopharyngeal space.  It’s stage 4 a because it has invaded the nerve, erroded then Bone of  my skull base and entered the muscle and two lymph nodes.  The good news is below my neck is negative. 

Next steps will be to have a Biopsy on Wednesday and an MRI on Saturday.   While walking through BJs, Dr B called.  He has concerns that it is likely a lymphoma or nasopharyngeal cancer and we need to move on getting it diagnosed so we can start treatments.   He says likely chemo and radiation as treatment as it has invaded the skull base as well as the sinuses and ear canal.  There are several enlarged lymph nodes as well.  He will biopsy one on my cheek. 

Of course my thoughts run away with me.  Immediately thinking of my kids and my jobs and how I am going to make sure everyone has what they need. 

A conversation with the twins about who they would like to live with if something happened to me and John. Like a plane crash.   I always assumed guy it would be with my dad.  And he would make sure they were cared for but now I don’t know.  I always knew dad would have my back if something ever happened.  John will do great but he can’t do it alone. And what if something happened to him?  Luckily in my heart I know all four of my kids are smart and independent beings and will be ok if something happens to me. But I know I will need to gather my friends and family to make sure they have people who love them around them and John should anything happen to me.  Get my affairs in order in case and then get ready for the battle of my life to beat this thing. 

I don’t jump right to palliative care and hospice although it’s easy for my brain to pull me there when I read of a Large Mass that is eroding the skull base.  I stop my mind from wandering to brain cancer and the like.  I just watched robins wish and what I loved about it was his wife said “he was a warrior”.  I will be a warrior too.  I will fight whatever is coming my way.  Be it benign or malignant.  I will try to not let this get the best of me and keep pushing forward.  

Unfortunately, experience and patient histories are where the battle begins. I need to push aside the crazy running thoughts. 

My thoughts are for people who react from the treatments or the patients who threw blood clots and died.  And so the panic begins...

9/9. Biopsy Day

I’m not one to want fanfare but I definitely was anxious today. Spent first half of the day at work.  Getting things tidied up.  Hope to be back to work quickly.  But need a plan first. 

Got to Mass Eye and Ear surgical area and waited two hours for my surgery.  Anesthesia caught wind of some decreased saturation after surgery and gave me the option of IV and local or go to the main hospital for the biopsy.  I opted for the IV so we could get it overwith.  

It was quite traumatic.   Despite versed I feel like the surgery consisted of what felt like someone pulling teeth out of my nose and other people yelling at me to breath the whole time. 

They said they could t give me oxycodone because my Sats kept dropping so I left without even a prescription for Pain medication.  I got home and the flood gates opened and I sobbed.  I hate for my family to see me lacking control and in pain.  I need to find a space to recuperate without them seeing this horrible pain.  

9/10

Dr B got the prescription right over to the pharmacy and the pain was controlled.    Recovery isn’t too bad.  Headache is the worst of it-besides waiting for results And sleepiness because I’m taking the Tramadol but it seems to upset my stomach.     

Lots of people have reached out. I am grateful to have so many good people in my life.   I do miss my dad so much because I know if he was here he would be beside me but hoping he is watching out for me from above. 

The recovery from the biopsy wasn’t the worst.  Headaches and jaw pain.  The numbness is definitely worsening in my lower jaw.  Tramadol and tylenol took the edge off.  

Three days of not working started the day/night confusion which kills the sleep patterns. It is definitely better to work and have routine as long as I save enough energy to be a mom by night.    

Saturday night was the best sleep.   I stayed mostly asleep til noon.  I can’t remember the last time I could say that.  

I stayed low key most of the weekend but by sunday was ready to do a bit more. 

9/14  getting the news. 

I had my first day of clinical with the new students in the covid world.   Now down to four groups of four students to orient, explain concept mapping, tour the hospital and get their IDs.  It was so nice to be back at Winchester.   Around two the phone rang and it was Mass Eye and Ear. Dr Battacharyya had called pathology and the stains aren’t back but the preliminary diagnosis is firm.  Stage 4a Local invasive nasopharyngeal carcinoma.   Cancer.   I didn’t make it out with a fungal growth nor did I get lucky enough to have lymphoma.   Apparently NPC is rare. 2000 cases a year and most common in the Asian population but can also occur related to Epstein Barr Virus.   Dr B shares that this carcinoma is generally responsive to chemo and radiation which is a good thing.  He says he has arranged a team and set me up with Lori Wirth and Anna Chang at Mass General.  When I asked about Dana Farber he tells me that MGH has a proton beam radiation machine that is much more precise and where this tumor is close to many important  body parts including my optic nerve it is better to be more precise.  So we have the start of a plan.   In less than two weeks we have CT MRI biopsy and appointments with oncology and rad Onc.   

I realize my students are still with me and switch back into instructor mode.  Get them tidied up and then work with Winchester to find a replacement instructor for me.  The ball is in motion and we think there may be coverage.  Everyone at U Mass is very supportive.  

Telling everyone is difficult.   Trying to keep it black and white and limit the reaction is the hardest part.    

 

Can’t wait to have 2020 over and be on the other side of all of this!