Wow! Is all I can say to 2011.
My predictions for Roanne's longevity didn't ring true. 48 hours after my neck fusion, sitting on the couch with Roanne and hospice nurse, Joline, Roanne lifted up her shirt to expose a small rounded tummy and said, "I feel a little bloated", I realized she was not as well I thought she was. That was wednesday 10/12.
Friday night 10/14, sitting on the couch watching TV, her and Chris came back from Taco Bell with 3 small bags of food. I sat there shocked as I realized all the bags were for her and watched her eat practically everything. I knew deep down nothing good would come of that.
Saturday afternoon she took off to go shopping with her mom. Later I learned she shopped and ran errands all by herself in her mom's car. Saturday night would be the start of a long arduous journey. By midnight, Chris would be waking me up. Liquid morphine and phone calls to hospice were required to calm our ailing girl. Her abdomen was getting larger and larger and she was in excruciating pain. Brad the Brave, as he would later be dubbed, showed up bright and early sunday morning. Good bowels sounds, determined no obstruction, or so he thought. We continued to monitor with morphine and keep her as comfortable as possible.
Friends, mothers of friends, all came to help out, to stay with her, support her, support Chris and to support me. 6 days out of a 2 level neck fusion I was feeling exhausted. Someone brought donuts, Roanne had a bite. She seemed to be doing better. But a change in her previous independent status was becoming obvious. The moms ran over to Walmart and bought a baby monitor. Worried she would be too far away for me to hear cries of help and Chris going back to work, I needed some sort of assurance she could reach me.
Chris feeling like she was on the mend, headed back to Beale Air Force Base sunday evening. One of the friends stayed the night and I headed off to bed for much needed sleep. At midnight I got woken up, she wasn't doing well. More distended, more unbearable pain. Morphine and 1-800 hospice. By 2 am we had the ambulance on their way. She had to of had an obstruction, she was just too distended and in too much pain.
I rode in the ambulance with her, Greg went back to bed to try and get a few more hours of sleep with the plan to pick me up when I was ready. Just shy of one total week post-op I was not allowed to drive. Wearing my soft cervical collar, taking my norco, neck precarious, I solidered on, I had to be there for her.
A xray determined there was indeed an obstruction. Next up a Nasal Gastric Tube. They had hooked and IV line up to her port-a-cath so hydration and IV morphine was on board. She was amazing, cooperative, never complained, she readily accepted what had to be done. I asked that they use the smallest tube possible, but worried it would get clogged they used their standard size. The placement of the tube (a large tube that goes in your nose, down your throat and into your stomach) stimulated her gag reflex and buckets of green bile started coming out of her. She had been holding that all in.
With some of the pressure relieved and the morphine on board, she started to get some relief. Arriving at the hospital as a FULL CODE, I expressed my concerns for her being at my house, me an RN and the obligation I would have to her to perform CPR on her should something happend to her. (One week post-op I would not be performing CPR on anyone). Roanne was not ready to accept DNR status. Every time it was discussed with her, she said I am still thinking about it.
Roanne was interesting in that she was tired of suffering, tired of being sick, but she didn't want to die either. She couldn't handle chemo any more but in hindsight I am not sure how she really processed what the next step would be. As a nurse I knew if she stopped the chemo, she would get sicker and die. So the next logical step would be to start the hospice process.
But Roanne seemed like she was just going through the motions. She wanted to live here. To do that, I wanted her under hospice care. So she went along with it for my sake, but she really wasn't ready for it, I believe. If I could have one do-over it would be do have a conversation with her about what it was really going to mean if she stopped chemo. We talked about how much she didn't like it, how sick it made her, but not what the specific outcome would be. I thought it was obvious.
She had tremendous hope. If someone could survive cancer on HOPE alone it would've been Roanne. She had such a fighting spirit. She was such an enigma to me. I couldn't understand how someone with such a fighting spirit could give up the chemo. People I talked to thought her age had something to do with it. An inability to accept death. Not accepting your immortality at the age of 24 would seem the only explanation I could grasp.
When we had the hospice intake nurse come to start the process, there was Roanne, her brother Ryan, her sister MaryRose, her mom Avel, Chris, me and her best friend Megan all there. I heard the nurse ask her at least 5 times in this 2 hour meeting if she was ready for hospice and what it meant. She could find a study, fight some more, or she choose to start hospice. She chose hospice.
So here we are in Walnut Creek Kaiser ED. Confirmed bowel obstruction, NGT placed, end stage metastatic colon cancer, 24 yrs old, FULL CODE. Me just one week out a major surgery trying to manage her care. Not knowing what the bowel obstruction really meant and what laid ahead, Chris was called to come back. Then Greg was called to come pick me up.
Completely exhausted now, 2 nights in a row of limited sleep, one week out of surgery, fragile, scared for her and for me, I went home turned off my phone and went to sleep. Loud noises in the house (Greg and Brittany) woke me up 2 hours later. I check my silent phone and see many missed calls from the hospital. Crap!