First, I want to thank everyone for their prayers, love and support. I really appreciate it and it means the world to me.  You are my strength!

Good news is that my lung inflammation has basically calmed down, gone away. My oxygen levels are back up and I”m no longer on oxygen. Yeah! I didn’t like that, but I knew I needed it.

Hopeful that means the chemo is working. The tumor marker has gone down over 800 points also. This is a good sign also. And that was after one infusion.

I had my second infusion last Friday. All went well. I didn’t sleep well the night before so I was tired. Ray and I were joined by two of my wonderful sisters, Susan and Diane. It was so nice having my sisters there.  Of course, there were plenty of laughs.  Never a dull moment with Diane around!  Everyone else praised Ray for being brave enough to spend the day with three Agnew girls! Lol

I feel much better than I did after the first infusion and I attribute that to the change in my lungs and ability to breath better.  I’m having a little bit of a mouth sore problem.  Nothing as bad as in the past, but a sore inside my lip and roof of my mouth and dry mouth.  I’ve got tools to combat this and they’re helping.

Christmas

Christmas at the George Home

Julie arrived on the 21st in the wee hours of the morning.  I had started with the congestion and cough the day before but I didn’t feel too bad.   I had lunch with my best friends Julie Mangiagli and Nancy Walsh.  We went to Roma’s and had a nice visit.  Later that day Julie and I went shopping.  I was exhausted when that was over.  Friday I was really tired and slept most of the day.  We went to the Beachams that night to have a Christmas celebration with them.  I felt pretty good.

Friday at Beacham’s – Nana and Clemmy

Friday at Beacham’s
Ray, Bea, Jason, Julie

Then Saturday, Christmas Eve, I slept most of the day too.  We went to Sue & Tim’s and had a good time seeing everyone.  Sharon didn’t come.  Everyone else was there.  They were happy to see Clemmy walking all over the place.  Diane and I had a good chat with Gary about miracles and God.  That reminds me of something I’ve got to share with everyone.

When I first started the immunotherapy trial I had a dream one night and someone was handing me a ‘box of prayers’.  That was it.  Didn’t really know what it meant.  The following day when I woke up I had a message in my mind ‘you will have a miracle’.  That’s what got us talking about miracles, etc. with Gary.

I really am not sure about the miracle.  Maybe because they’ve gotten so many prayers for me, I’ll have a miracle.  Still waiting to see what it is.  Maybe I will survive this after all.

Anyway, we left Sue & Tim’s by 9 pm and I was in bed by 9:30.  That is not my typical Christmas Eve, but it was what I needed.  

Clemmy on giraffe rider from Aunt Julie & Uncle Kenny

Ray got a call early from Jason on Christmas morning that Clemmy was ready to come down. They got here around 7:30.  She had a ball.  She actually did get excited over her gifts.  It was the cutest thing.  Can’t wait until next year when she really knows what’s going on.  We all had a good time watching her and opening our own presents as well.

Clemmy with her ‘garden’

We had a wonderful dinner at Diane & Bruce’s as we usually do.  We stayed for a while.  Clemmy had a good time and so did we.  I really felt pretty good that day.

It was the following Tuesday that I found out about the inflammation of my lungs, etc.

Clementine’s 1st Birthday

Clemmy and Nana
Love her birthday outfit!

December 30, 2016 – Clemmy’s first birthday.  That year went by fast.  We went to Deb and Butch’s to celebrate.  Julie, Jay, Heather, Deb, Butch and I had a good time.  Clemmy was the life of the party.  She did a good job on her personal cake and had fun.  She was all dressed up for her party too.  She got some great gifts.  She’s beginning to think this is a normal thing since Christmas was only five days earlier  

New Year’s Eve and New Year’s Day

I still wasn’t feeling that good, but I was managing okay.  I was basically resting most of the day.  Watching tv, playing computer games, coloring.

New Year’s Eve Jay and Heather were going to a party and found out it started later than they thought so they asked us to watch Clemmy.  Of course we did.  She ended up spending the night with us.   She’s such a joy and brings me so much happiness.

Clemmy having fun on New Year’s Eve

Technically didn’t stay up to see the new year come in, but I was awake.  I was sleeping on the couch because of the coughing and ability to sleep propped up better.  Around 2 am I hear Clemmy talking.  At first I thought she was talking in her sleep.  She continued talking for 15 minutes.  Ray ended up getting up and changing her and giving her a bottle and put her right back to bed.  She woke up around 7 am.  The kids came to get her at 10 or 11 and they looked like they needed to go back to bed.

There was a surprise 80th birthday party for Aunt Pat New Year’s Day at the Irish Club.  I’m so glad we went.  It was a wonderful party and she was so surprised.  The food was great and, of course, the company. There was a table of Agnews – Shar & Bill, Jim & Elaine, Ray & I, Hank, Sue & Tim, and Diane & Bruce.  We stayed longer than I expected.  It was hard for me to even walk across the room without having a problem breathing.  Cousin Tim came from Florida with his daughter Alexis.  Beautiful young woman.  Farrell’s were there too and a group from West Haven.  Of course the Manions and the rest of the Aunt Pat’s family and Donna’s family were there.   It was a nice turnout for a wonderful, deserving lady.

A lot has happened since I last updated.  Although we had good news after the first two infusions of the immunotherapy drug, which was the CA19-9 tumor marker going down 1,000 points each time, when I went for the third infusion things had changed.

The week before Christmas I started with a cough and a lot of congestion.  I was coughing up mucus a lot and thought I had bronchitis.  I also had shortness of breath and my oxygen levels were too low to get the third infusion.  They did a chest x-ray and then a chest CT scan and it was discovered that my lungs were inflamed and the tumors in my lungs had grown.  The inflammation was from the immunotherapy drug.  They wanted to hospitalize me that day.  Ray quickly talked them out of that!

Ray purchased an oximeter, this is a little thing that is put on my finger and measures my oxygen level and pulse.  I sent the readings to the APRN every day.  They also recommended I take Robitussin and that was unbelievable in clearing up the congestion.  When that was done, I still had shortness of breath.  It’s obvious when I walk up stairs, walk for an extended length of time and just when I get dressed.  Once I rest, I’m fine.

We saw Dr. Zhu on Jan 3rd and he said the growth was the cancer progressing and not ‘pseudo-progression’ as we had hoped.  Pseudo-progression is a term used in immunotherapy where the tumors give the illusion of growth when they are actually being invaded by your immune system and then disappear.

Two days later we were back in Boston for an eye exam and a CT scan of my abdomen.  That was to finalize the end of the trial.  The next day, Friday, met with Dr. Zhu and he said the liver also had growth of tumors.  Not a good day.  He really wanted me to go on oxygen.  Julie had told me she researched and found that my oxygen level had to be 88 for insurance to approve it.  My reading that day was 91.  So the APRN and I walked around the office until my level got down to 88!!!

After that meeting I was off for my first infusion of Folfox.  A different chemo than when I was first diagnosed.  I will stay on this while Dr. Zhu and his team work to find something else for me.  Right now the goal is to stop the growth, and of course, if there is shrinkage then all the better.

So the infusion was tiring and took a couple of hours.  When that was done a ‘pack’ was hooked up to the tubing from my port and I was sent home with that to have continuous chemo for another 46 hours.  How fun is that???  NOT!

As many of you know I have a hard enough time walking on my own (lol), klutz that I am.  So Friday night, Saturday and Sunday I’m hooked up to the chemo pack.  It’s got a tube hitched to my port and to the pack.  The pack is in a bag, like a small shoulder bag, so I put it on my shoulder when I need to get up for anything.  Of course, that’s when I remember I even have it!  One time I got up and headed to the bathroom, Ray was yelling ‘stop! Stop!’  I did and saw that the blanket I had on my lap was all wrapped up in the tubing.  Oh boy!  I managed to hook the tubing on cabinet handles a few times, but all was fine.

I was tired after the infusion and Saturday.  Sunday I was exhausted.  Couldn’t keep my eyes open.  Heather and Clemmy came to visit Sunday and I couldn’t stay awake for them.  I also got sick that morning.

Monday I woke up and felt great.  I thought okay.  I can do this.  If I’m going to feel this good until the next infusion.  Unfortunately, that was short lived.  Tuesday tired again and sick at 4 am.  Upped the anti-nausea meds on Wednesday and was okay that day, Thursday exhausted and today okay.

The oxygen was delivered Wednesday.  What a humbling and very sad experience that was.  It’s a scary thought that I may need this for now on.  I’m trying to be hopeful that I’ll have shrinkage in the lungs and not need it for long.  It’s supposed to make me feel better and I guess it does, but not that much of a difference because my breathing isn’t really too bad.  I put it on and take it off throughout the day.  I’m not able to sleep with it yet.  I’ve tried a couple of times and it just doesn’t work for me.

Last night I had a strange experience.  I got very antsy.  Only word to explain it.  I couldn’t find a comfortable position to sit or lay down.  I couldn’t read or watch tv or play computer games.  I just felt antsy.  I took an Ativan after about a half hour, but it was still an hour before I felt calmed down.  And the entire episode was finished off with a bout of diarrhea!   God, I needed to sleep!  I ended up sleeping in Ray’s huge recliner and didn’t wake up for 7 hours.  That was a great sleep.  It was so comfortable.  I think I’ll find myself sleeping there again.

So far with this chemo I’ve had fatigue, vomiting, constipation, diarrhea, flushing of my t-zone, insomnia, and maybe that antsy episode is from it too.  The reality is that it could be worse.  So I’m hoping it doesn’t get worse as I continue with these treatments.

I’m going to do a different post about Christmas and Clementine’s first birthday as this one is long enough.

I appreciate your prayers, support and love.  It means the world to me.  Keep it coming.  You are my strength.