Had the plan gone as expected Papa would have gone home in October before Halloween. Here we are days away from Thanksgiving and he is still here.
Papa had blood and platelet transfusions, G shots in his belly, a PET scan that took four tries, and round two of R-ICE chemo. Each appointment lasted hours. Most were at 6:45 a.m. which with Myles and our hour drive to the clinic meant waking up around 4 to get dressed and meet my mother-in-law to give her Myles around 5:30. I sat in the waiting room typing away at my book, or browsing Facebook, or the news, writing emails to my mother whom I do not talk to enough. I learned which chairs were next to electric plugs to recharge my electronic devices; I knew which chairs were under air vents and freezing. I chatted with patients and families -- I guess I look approachable, or people are nervous and need to chat with someone other than their caregiver who they spend hours with. Most of them were living in hotels or cancer houses in the area; people travel from across the country to have their cancer care at the Cancer Care Alliance.
Weeks later Papa was ready for stem cell collection day. He was hooked up to a huge machine for four hours. He could NOT move or the machine beeped and stopped, a nurse had to come in and re-set the huge ancient-looking contraption.
Weeks after that he was re-admitted to the hospital for BEAM chemo which lasted a week; he got one day of rest, they called it. Then the stem cell transplant began, which lasted two days. Cells are defrosted bedside in a water bath; vitals are checked before, during and after to make sure his body didn't go into shock or anything like that. Almost immediately after the cells were injected into his Hickman line, both him and his room smelled like creamed corn; the smell lasted for days.
Doctors refer to stem cell day as D day, or day zero. The BEAM chemo killed all of his bone marrow. Then we met the seven dwarfs of chemo: Itchy and Scratchy (that came with a horrible rash that lasted weeks and went from his face to his feet ranging in colors from bright red, to a red wine purpleish hue), Sleepy, Poopy, Barfey, Grumpy and Anorexic. They all seemed to take over him at the same time. Those were two long weeks.
I was re-trained to operate the fluid pump in his hospital room before he was discharged the first time. He was sent home a day after his transplant and was miserable for days. We had a hospital bag packed for a few days because we were sure he was going to be re-admitted.
My husband Keanen and I spent the first few nights awake listening to him moaning and groaning in the room next door to ours. He made frequent trips to the bathroom to throw up; he also had uncontrollable diarrhea. He was NOT himself. Keanen and I cried one night sitting on the couch pretending to watch TV listening to him laying in pain just down the hallway knowing there was nothing we could do.
A few days later he was re-admitted to the hospital as they told us he would be. Myles and I were at the Cancer Care Alliance with him. He was in a triage bed for fluids most of the day. They told us he would be admitted in the afternoon. Myles and I ate lunch and hung out in the playroom to give Papa some quiet time since 3-year-olds seem to not be able to be quiet for more than a few minutes at a time. They just don't.
We went to his room to get him and bring him to the hospital, maybe a five minute drive; he was freezing and had a blanket in the car. He clearly felt like shit and a car ride with a 3-year-old is also NOT quiet. We were instructed to drop him off at the roundabout and have a volunteer get him in a wheelchair to take him to the cancer floor of the hospital; he got out of the car, grabbed his luggage and told me to go home. He had not eaten in days. I figured it's a hospital I guess someone will help him if he needs it. He was in no mood for us to park and then go hang out in his hospital room to bring him his luggage.
We tried to call his cell phone that night to check on him; no answer. I tried him the next day and still no answer. Finally he called me back and gave us his room number and that phone number. I went to check on him a few days later to bring him some clean laundry. He was asleep, still had not eaten and his rash was worse. He was so out of it he had not even plugged his phone into the wall, so we were calling and getting voicemail to a phone not even plugged into the phone jack.
The next few days were almost relaxing compared to the laying awake and listening to Papa in the bathroom, wondering if I needed to go in and check on him. Not knowing the boundaries of taking care of my in-law. Had he been my dad there would be no question; I'd have been in that bathroom many times.
Days later he was discharged again and on IV fluids and medication given by us, at home. After a few days it was not scary to operate his pump. He still takes handfuls of medications, but after months and months of doctor appointments and hospital stays he is good to go and going home in a little more than a week.
Myles will get his room back the day after Thanksgiving; I have begun looking for a new job. Since Papa has been here Myles has been potty trained, and they have gotten to know each other. To visit your grandchild a few days every few months is NOT the same thing as moving in with them for months. They watch movies together in Papa's room; Myles has finally begun asking why Papa doesn't have "grown up" hair.
The Seattle Cancer Care Alliance has new test programs for HIV-positive patient stem cell transplants. I tried to sign up, but I do not have cancer, so I don't qualify to be a guinea pig. I have applied to work there; we'll see how that goes.
It has been educational, emotional and a long five months. Papa needs to get home to his wife, dogs and his job. I need a job; Myles needs to go to preschool. We are getting cabin fever. He needs to go play with kids. I'm looking forward to the next chapter of our lives and for now it seems to be going somewhere interesting.
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Read Brooke's blog, Voice of ONE.