Two month scan

3/23

I’m walking on sunshine and it’s time to feel good. https://youtu.be/CKh0dLIuIu8

I’m all over the place this morning.  Dropped kate at the bus at 6.  Took a shower (something I usually don’t do it there isn’t an hour to rest after) 

Have early appointments with Dr Chan and Dr Wirth.   Waiting to hear the results of my two month scans.   Yes.  It’s been two months since I was treated with chemo and radiation.  It’s been the hardest two months outside of the times when declan had open heart surgery and my dad was at the brigham.    I struggle with appetite and fatigue and am the only person I know who doesn’t want to lose weight.   I now weigh less than I did when I got married at 22. And to be honest I have plenty to lose. But in the right way.   

I look in the mirror and don’t recognize myself sometimes.   The buzz cut with the crazy cowlicks and huge bald spot from the radiation.  

At the same time I feel like I am gaining.  I made it ten hours at the brigham yesterday.  Granted it’s a desk job but I managed to take the bus from the parking lot both ways and get two and from.  And for the first time I finished a small chicken soup.  Accomplishing two things.  One eating chicken. Which has been a challenge since September.  And two finishing something.  It felt good to work.  Many of my colleagues couldn’t help but hug me and I have to say I truly feel cared for.    While I got in some socialization I also got a ton of work done.  The new patients are still pouring in and I felt like I could make a difference with some of them.  It feels good to be helpful and useful and busy.  

The word I decided for spring is Momentum.  I find when I keep up the momentum I do well.  The minute I stop is when the fatigue hits.  For example I took a walk and for the first time I decided to go up Rich road the hard way.   Reminded me of walking up Madison street in Medford.  You stand at the bottom and look up and groan a little.  But I made it.  All the way to the top.  Then around until I stopped to talk to some of my neighbors.   That is where the momentum stopped.  Ten min of chatting and some dizziness.  I was done. But proud of my accomplishments. 

I’m scared to death of today.  Didn’t realize it until the songs played.  First one. I’m walking on sunshine.  And it’s time to feel good.  Had me in the mood.    Then came “I’m still standing” from Elton John.   https://youtu.be/ZHwVBirqD2s

I’ve read the reports.  Had my heart set on “alls clear is good to hear” but instead was a lot of almost gones.  The NP and a few friends read it as it’s almost gone.  I read it as that means there is still something left.  

It takes days to process.  I finally settle on the fact that I had a large stage four nasopharyngeal cancer.  It was not physically removed but rather treated with radiation and chemo-lots of both.  The cells have to die and go somewhere and it doesn’t happen all at once.   Someone on a Facebook  group for NPC support tells me his first scan was the same and the second it was gone.   If it stays gone for the first year it’s a 95% cure rate.   That’s what I want.  Because knowing I live in Boston and I’m at MGH/MEEI that it’s even better than 95%.  

I get off the elevator. Was nice to see the people at the door.  Same people who greeted me every day during treatments.  Each one remembers me.  Or at least they do a good job of masking if they don’t.    I get through security get on the elevator and offer to press everyone’s button.  It’s always nice in covid when you don’t have to touch anything.  So I press two and four and nine.   When the stop after four comes I get off the elevator and say to the people don’t you want 9.  They say it is 9.   I realize I pressed every number but my own.  7.     So down I go to seven.  I get to dr Wirths  office I check in and realize I wasn’t even supposed to be on yankee 7 until after my appointment with dr Chan.   So I get on the elevator again.  Go to two and over to the Lunder building.  Down to L3.  

Now. Here I sit in the waiting room.  Waiting for Dr Chan and then Dr Wirth.  I know that I am a mess inside.   I distract myself with the friendly faces. A woman strikes up a conversation about her last day of radiation is tomorrow.  And how long did it take for my hair to grow in.  It’s amazing I am part of a new club.  It’s so good to be on the other side.  I gently warned her that the fatigue will hit in the next few weeks and not to be sad or depressed as it’s normal.  I want to help someone avoid how the fatigue made me feel.  

Vitals done.  The darn cuff blew up to over 200. I’m thinking my pressure will be high then three attempts and blowing up to 200 it’s perfectly normal 118/70.   Ok. Deep breath.  Time to wait.  I know Dr Chan has her eyes on the scan.  What is she seeing?  What are they saying about me?  I want to sit beside her and listen to her thoughts.  Instead. I am in this room.  I know they are going to scope me and they leave the endoscope sitting beside me. 

She will look in and see the mass.  Hopefully lack of it.  

Miah vs cancer 

And the winner is....   Me!

Dr Chan came in and immediately used the word “fantastic” to describe the scan.   I asked.  Did you say fantastic.  She said yes.  Fantastic.  It has shrunk dramatically 

(You can see the opening in the passage on the left compared to full blockage on the right. That’s it. GONE)

I’m told not to lose any more weight.  In my head I say “that’s easy for you to say”. Reality is the food is getting a little easier and even though it might not be enough it’s something.   

The other good news is there is a blood test for my type of cancer so we will be able to monitor for return. Or should I say it’s absence.  

I cry.   (Nothing like crying into a face mask) Thinking how lucky I am to be fantastic.   Guess I know what shirt I’m making today!   FANTASTIC! 

So. This is the deal.   I have a stage four nasopharyngeal cancer that evaded bone and structures.  My scans will always have scar tissue and never look normal.  But the response to the treatment was both fantastic (according to Chan) and Excellent (according to Wirth)  very optimistic about the prognosis and the plan is to take out my port.  Scan me in four months and again at a year.  They were all so happy.  I can not stop crying.  It’s been a long winter and I am so relieved with the amazing news.  I want to scream from the rooftops!   

I am so blessed to have an excellent prognosis, Amazing family and friends,John and the best four kids ever.    Thank you everyone!