Cycle 3 week 1

 Note to self. And anyone who trusts healthcare. Nobody is perfect and mistakes can be made.   Apparently the cat scan I had on Wednesday did not include the head and neck. Only the chest.   This defeats the purpose of loading me up with radiation and contrast to find out if my cancer retreated from chemo.   So this question goes unanswered.  The mistake was easy to make. They put orders in for two separate CT scans but only scheduled one. It felt as though they were doing it as I was in and out of the machine head to waist but no.  They didn’t do the head and neck.   

I was also fitted for the head stabilizer for proton beam.  It’s quite the contraption as you can not move at all.  The people were super nice and they did another CT for Dr Chan.  I am hoping she may be able to see what the other CT couldn’t but I haven’t heard back from her yet and the results aren’t in Epic.  

On a positive note, I got the best hat ever in the mail.  Ordered it on Etsy.  Don’t laugh.  Ok. Laugh because I look like a middle aged cabbage patch kid. And I love it. Makes me smile. 

Tolerate chemo  just fine hooker up to the 5FU pump til next Tuesday. Hillary my chemo nurse thinks that this will make a world of difference since I didn’t get cisplatin.   She says that I will be pretty wiped the last few days weeks of radiation and for three or four weeks afterwards as it takes a bit to recover. They did change my end date to 1/14 due to the holidays but I’m still out of it before the inauguration which is like d day to me. Hoping January will bring a big turn around in the United States climate. 

 Finished the mammogram and they aren’t worried. Said it’s stable and nothing to do.  Didn’t even do an ultrasound so that’s good. They say they will send me a letter. 

Got the cat scan done after chemo.  I have to say the service at MEEI has been very efficient. My appt was at 430 but they were able to get me in and out in fifteen minutes at 315.  

Lots of comments on the Henna.  Hoping to get a few weeks out of it especially with the heat in the next few days.  I did find myself  looking for a hat this week when my head was cold.  Have had lots to choose from which is great. 

Good news. 

Just read the reports 

Mammogram shows no change in two years and call it benign will continue to follow. 

Better news. 

Large nasopharyngeal mass has mostly resolved since the prior exam.    This is great news. Means the chemo did a great job in shrinking the tumor.  Totally ready for the proton to wipe this thing out for good! This won’t change the plan. Still have to finish this cycle of home chemo til Tuesday and then 7 weeks of radiation with chemo starting thanksgiving week and ending 1/14/21.   

I want the gold standard of care to ensure it won’t come back! 

Monday 11:9

Feeling good today. Did some arts and crafts with patrick and got a good solid 9 hour work day in. All my health streams, 3 intakes and a lot of organization. Now off to Kates game.  Did a lot today. Hoping I have the same energy for tomorrow.  Melissa is coming to give me some IV fluids tomorrow and disconnect the FU pump for the last time. Now just waiting for radiation chemo to begin on 11/23. 

Nothing I need but just to get to 1/14.  The big goal.    Still so relieved that most of the tumor had regressed.  Good news all around this week!  

Tuesday 11/10

The exhaustion set in today.  Heart rate is up a bit and Melissa the NP from Medically Home came and gave me some IV fluids which really helps to keep my energy up and dizziness at bay..  My labs look really good this time and my appetite is fine which is great.  (giving up the cisplatin this round seemed to help)   

Wednesday 11/11  Made it to Patricks Field Hockey game. Tired and a little sore but had no trouble getting into the stands.  Brought Pizza and meatballs over to visit with my Mom in the yard since the weather was good. So nice to see Her and DD and TT.  Got a little backrub from Aunt DD.  Nice to get some love!  Goes a long way.  Of course I took out my favorite hat for a selfie!  The kids dont love it but I do!

Interview with CBS yesterday went well although I feel so bald now looking at the pics   Probably should have put on a hat or something to make me look less sick.   I certainly look sicker than I feel.  I am tired but not horribly and feel as though I have been able to keep up for the most part.  Patrick got to film a little while we did a zoom Interview with Dana Carullo from CBSs    We talked about the benefits of being able to stay home with family and not having to trek to Boston every time I need fluids as well as having someone check in on me   

Here is a pic of Melissa Smith NP and I during the interview