Days 1 and 2 – The Odyssey Begins….

Friday, February 13th  really should have been Day 1 as far as I’m concerned because it was an all-day deal getting my new port.  They call this a pheresis catheter, a small tube they insert into a large vein and “tunnel” it under the skin in the chest to a place where it exits the body.  The IV hooks into two external ports.  They  have to be cleaned and flushed daily so my brother has learned how to do this.  The procedure was done without a glitch but in recovery it started to bleed and it took two hours to get it to stop.  They would put lots of pressure on it, redress it and then put a bag of saline on it for pressure and we would wait (this was a bit uncomfortable).  Finally it stopped!  By that time it was 3pm and we still had to pick up some supplies elsewhere and get blood drawn again.  We left at 5 and traffic was awful so 90 minutes later we were finally home.


The official Day 1, Saturday the 14th – HAPPY VALENTINE’S DAY!  We started at 7:30 and some pre-meds were infused and then the chemo for two hours.  Much to my surprise I was exhausted immediately after the infusion.  We had another infusion of the drug that helps line the bladder to protect it from the chemo.  This goes in for 15 minutes every two-three hours.  We took a break and went to eat something but I held my brother’s arm because I felt kind of wobbly.  I only ate a half sandwich because I felt queasy and the last thing I want to do is throw up!  So interesting that I am more and more allowing myself to be vulnerable and be cared for.  For someone who has been so independent all her life this is a surrender that has to be made at this time in my life.  It’s a good learning for me.  And you know what? I could get used to this, at least the driving, cooking and catering to me when I don’t feel so hot. We had some prescriptions to fill and by the time we left it was again about 5pm and once again a long ride home.  I was just really tired so went to bed at 8:30 and woke up at ten in some pain, from my neck, jaw. teeth, face and head – again a surprise.  After an hour I took a pain pill and it took another hour before it started to subside. As an aside here, my medical staff had told me that I couldn’t use any of my essential oils -either externally, internally or diffused.  Bummer! But this is a trial I am in so I don’t want to rock the boat even though my belief is that these oils are totally pure AND they have been used for healing since ancient times!  But I thought I could just smell the peppermint to help with the pain since I have used it for headaches before, and yahoo, it worked (or maybe the pain pill kicked in) – whatever, I was able to sleep.


DAY 2 – I should explain this first phase of the process.  This is called Mobilization.  The chemo moves the stem cells  from the bone marrow into the blood stream.  Now I will get daily shots of a drug that is a growth factor -it grows the stem cells to a volume where they are ready to be “harvested” or taken out of me and frozen, until they are ready to go back in me.  So today is the first shot and fortunately we don’t have to be at Hopkins until 2pm every day.  Weather is frigid and windy with snow left over from last night.  I’m just somewhat tired this morning, not bad though.  We had a pretty easy visit.  They did some labs and then I got the shot and after gathering some supplies for dressing and flushing the catheter we headed home.  It’s normally about a 45 minute drive.  Had a quiet day with a nap included, a lovely soup for dinner cooked by my wonderful sister-in-law and later to bed.

I have to say once again that the staff at Hopkins are top notch.  My attending physician. who I met with last Thursday, explained the whole process again in a clear and straightforward way making sure that all our questions were answered. He gives me a great feeling of confidence that I am in good hands – it all helps!!

Since my original intention was to write every day and I see now that that depends on how I am feeling, you can go on this site and elect to be notified when I post something.  Once again, I so appreciate your love and prayers and just checking in on me – it’s comforting to feel the gift of human kindness and compassion.  With love, Kathy