Chemo Journey Part 2...Patience, Learning, Enduring, Patience...

Colored folders are bills, binder is everything I didn't want to know.

The first chemo treatment was an overnight stay.  It wasn’t so bad, but the next day a constant stream of nurses came in for “caregiver training”.  Talk about overwhelm city!  First they bring in this big blue binder…full of stuff I needed to know to take care of Jake and info about the drugs they would be using on him and about Rhabdomyosarcoma.  Can you say…Information Overload!  Perhaps in hindsight I should have had Dave there with me…at least for support.

Dave would come to the hospital any time I asked him to.  He would always come and sit with Jake after work.  He would have been there more if I had asked him to.  Handling the hospital stays and care by myself was my own doing.   I had the most medical training between the two of us, so I felt I was best suited for the job.  However, I wasn’t prepared for how alone I felt at times and the pressure to do it all…not to mention how scary it was to get bad news and have no one there but your angels to hold you.  I tried hard not to cry in front of Jake.  He felt sick enough with his illness, I didn’t want him to feel bad that it made me cry…often.  I was recently told that it was ok to let him see me cry because it was ok for him to see that I was human.  I’m a leaky human!

Primary Children’s Hospital was great to make Jake feel comfortable and help him pass the time with games and stuff.  They gave him pretty much whatever he wanted to eat.  I believe week 10 was when it grew old.  I remember Jake and I both saying…”How much longer do we have to do this?!”  It wasn’t long after, that the smells of the hospital started to make him nauseous.  The smell of the hospital food, the cafeteria, alcohol swabs, hand sanitizer, even just looking at a syringe made him throw up…poor guy!  There came a point where he just didn’t want the treatments anymore.  He wouldn’t go to the hospital when he had fevers the last 3-4 months of treatment.  The doctors were very accommodating when Jake started hating the overnight stays.  They arranged for him to get his chemo all day long at clinic and to get hydrated at home.  This meant I would be his home care nurse in the wee hours of the night and morning.

I can’t tell you how many times I would apologize to Jake for the shots I had to give him (very painful).  Not because I was bad at it, but the shot would burn when it went in and for some times after.  There was nothing I could do to make it better.  We were both very grateful that we found an alternative shot that, although it hurt just as much, I only had to give it to him once after the “long” chemo. 

One of our struggles, Jake being 19, was how much say Jake had in his treatment and how much say I had.  There were times that, although “mother knew best”, he was so sick of the treatment, he didn’t want to do what was best, just what was easiest.  If it wasn’t life threatening, I had to let him use his free agency.  Since we have no way of knowing what would cause the infections or the fevers, there may be a price to pay later…or perhaps it was a good gamble.  I guess we will wait and see.