It’s been a busy week and there’s much to catch up on, but the sentinel event of the week has to do with my work. My supervisor asked for a meeting to let me know that hospital administration has decided that being on long-acting narcotics (a fact which I voluntarily declared to them) constitutes a liability risk that they are not willing to undertake and I am being taken off the clinical schedule effective August 1.
This doesn’t affect my employment, pay or benefits. I just won’t be seeing patients any more. If you had asked me beforehand, I probably would have expected to be thrilled with this turn of events. In actuality, it turns out laying hands on people is a pretty big thing to me and I’m finding myself doing a bit of grieving. Which is probably good - baby steps and all. I’ll be losing lots more little pieces of my identity as this process goes on and this is probably a pretty good one to cut my teeth on. So today is my second to last clinical shift ever.
Physically, I’m feeling pretty good. The gastrointestinal garbage from the Navelbine has resolved. I no longer have the bloating and epigastric pain, loss of appetite or early satiety. I’m still trying to find the magic schedule of stool softeners and laxatives that will keep me “unbound” while on narcotics without unleashing the opposite of bound-up.
My sleep has been a little less restful this week so I spoke to hospice yesterday, increased my bedtime Ativan from .5 to 1 mg and had a lovely night’s sleep. I am back on regularly-scheduled Ibuprofen doses because when I came off of it I was pretty miserable with different pains at different times and I prefer to keep the narcotic doses as low as possible. Once I’d been back on the Ibuprofen for a couple of days I can say I am occasionally completely pain-free. More often I have mild neck and/or low back pain and very rarely have enough pain (usually neck, usually in the middle of the night) to take a “rescue” oxycodone.
Hospice is planning to talk to my oncologist about switching me from oxycontin to methadone because you can go pretty high on the dose of methadone without running into the sedative side effects. We’ll leave that until after I get back from Texas, because things are very tolerable on the pain control side at this point.
My online friends have started a team for the national Free to Breathe Walk in my honor. It is called Team Sunnyside (my online moniker for many years) and I will try to see if I can get a widget to put on the blog in case anyone wants to donate to the cause.
So the improvement in my symptoms allowed me to do the crazy driving schedule last week. Wednesday evening my number two daughter and I drove to my cousin’s house in PA, where we enjoyed a late evening kitchen chat before we hit the sack. We left early the next morning and drove to Kennett Square, where we got her situated in the guest house, bought some groceries, had some breakfast and then got her hooked up with the high-risk emergency staff at the horse hospital.
I hopped in the car shortly after noon to head home and ran into some yucky I-95 traffic, making me late for my hospice admission appointment, but my husband took care of things until I got there. I worked a clinical shift on Friday, did laundry and watched a movie with my son on Saturday and then went to bed early. Sunday morning I took a 5 a.m. train to Boston, took a cab from the train station to Boston College, where I picked up number three daughter and her car.
We drove from Boston to Bethlehem, PA and got her settled (a little bit late because we got lost in Bethlehem - sorry Hannah and coach) in the volleyball camp and then I turned around and drove her car home and made it in time for dinner! I was perfectly comfortable with all the driving and really enjoyed the time with both girls. Their father is picking them both up today and bringing them home.
Tomorrow is my last day with daughter number two before she heads back to Colorado and we will pack as much into it as we can. My husband and I leave for Texas early Friday. We will be staying with friends in Houston Friday and Saturday and then head to San Antonio for stepson number two’s white coat ceremony on Sunday. Stepson number one will also be there so we are hanging around on Sunday to enjoy the kids.
Stepson number two starts orientation in earnest early Monday morning so we’ll take stepson number one to the airport before we head north. After stopping to see my husband’s aunt we’ll head for Dallas where we have nothing to do but visit with friends before we head home on Wednesday.
So, all in all, a very good week as far as quality of life goes. That’s pretty much all that matters to me at this point, so a very good week indeed. Next report after we get back from Texas!
Link to blog: http://www.nationallungcancerpartnership.org/blog/?p=270