As my dear friend Lisa reminded me, we can now add Memorial Day to the running list of holidays spent in the hospital. I’d make some sort of joke listing the remaining holidays and getting BINGO but it is not necessary to further jinx myself. (Hands off my Arbor day cancer!)
On a more honest note, the general positive disposition I’ve had toward the medical hurdles over the years has been seriously challenged. I’ve spent twenty-one nights since the beginning of May in a hospital bed, missing home, feeling as if any semblance of ‘normal’ has slipped through my fingers. The days are long and every second that ticks by in this hospital breeds ruminating, fearful, unecessary thoughts. Thoughts that make me sometimes doubt that I’ll ever get back to the happy, eating, working, socializing person I once was. Over the last eight days especially, I’ve felt pretty raw.
It’s not that I think that cancer is getting out of control. I’m back on chemo and I really believe that it will help the situation with my intestines. The fear (granted possibly irrational) is that despite our best efforts, my intestines just won’t work properly. Further measures if this NG tube/bowel rest effort didn’t work would potentially mean a g-tube in my stomach or colostomy bag. Though I’m sure many people live great lives with a g-tube or colostomy, I just can’t come to terms with that as my reality. We definitely are not there yet, but it has been mentioned as a worst case scenario and that frightens me.
It has taken daily pep talks and encouragement from a wide variety of people to push through to that next day and maintain a shred of optimism that this is still just a giant speed bump and not a dead end.
I did have a win today though! So the NG tube has been in for just over a week now. Today was the day that we would test the waters and see how my intestines do without the tube clamped. This is called a clamp trial because the “hose” stays in me but it’s disconnected from the vacuum type unit that sucks out the liquid. The first test was going from 10am-2pm without nausea, which I was able to do. At 2pm they reconnected me to the “vacuum” and measured the output. The output ended up being about 50 ml which is great (they are looking for < 100 ml). As I write this I am on clamp trial #2 where I need to go 6pm under the same conditions.
Generally the goal is for my intestines to act independently and eventually be able to handle solid food. It is going to be a long road but I am praying with every fiber of my being that they get back to where they need to be. Hopefully I make it through the night clamped without any issues.
So physically, emotionally, that’s where I am.
On a bit of a different note-
I need to take a moment to thank everyone involved in making sure my move from Providence to Pawcatuck, CT went off without a hitch. While I sat in my hospital bed, my parents, Cory, and countless friends tirelessly packed my entire apartment and moved it to our house (that I cannot wait to start living in with Cory as soon as I’m out of here!). Mom, Dad, Cory, Rob, Phyllis, Sheila, Katie, Bobby, Sarah, Beth, Brendan, Emily, Jo, Kyle, Andy, Ashley, Erin…jeez I hope I didn’t miss anyone… you have no idea how how much your thoughtfulness on a humid Saturday lifted a giant weight off of my shoulders. THANK YOU. I cannot wait to welcome you back when I am well and can truly call this house my home.
Thank you to all that have sent flowers, gifts, texts, cards, encouraging facebook posts, silly memes. Thanks to those that have visited and especially to those that have caught me “in a moment” and snuggled me in my hospital bed. Please know that it has really helped to get me through the day.
Finally, to the dedicated nurses, docs, case managers, social workers, CNA’s, etc. at Women and Infant’s Hospital. There is special karmic goodness coming your way for all of the kindness and comfort you bring on a daily basis. Thank you.