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.