Tuesday, December 28, 2010
Going on a cruise may not have been the best idea. You need to understand Mom though. Christmas is Big. It's HUGE. she usually spent a solid month of preparation, stringing garland, making centerpieces, arranging travel. All of this focus so that the family had a "magical" Christmas. It couldn't just be good, it had to be magical.
So she told us she wanted to go on a cruise. With no energy, i've come to believe it is because she thought the cruise would provide the magic. We all acquiesced, not that a cruise was what we wanted, We just wanted to be selfishly get Mom all to ourselves locked on a boat.
When I saw her at Thanksgiving it was difficult. She looked like a wounded bird, shivering in the cold. This woman once so full of life, was now so weak. But she was still Mom. We made plans, we looked at houses. We ate thanksgiving dinner. I made like seven dishes and she tried each of them (I later found out she couldn't keep any of it down) but she told me all tasted so good. Even though she had lost most of the taste in her mouth.
So I knew that the chemo and the cancer was aging her. I wasn't prepared to see her. She had aged two decades in under a month. Her last chemo had letter her with sores over her hands and feet and her poor mouth was full of sores. while her arms and legs were wasting away, her body had begun to fill with fluid, and this petite woman who once went on a diet of hamburgers and shakes to put on a few, now had a large distended belly. and her feet were too swollen to walk. But she was still Mom, under that sore little body, it was Mom. We had breakfast together and the whole family sat around the buffet and made dumb jokes (a Dayton specialty), and Mom would roll her eyes (a Susan Dayton specialty).
We got on the boat, and things were going well. We had a few good meals, we sat around and talked. We watched some movies, and made plans. We are always making plans. She had a nice view from her balcony, the Queen of the Sea could finally survey her domain. We thought we had two weeks together. Things looked good. We could sit and hold hands and say the last things that we needed to say.
Things changed on the second night. It was a hard night that only my Dad knows all the details to. But we thought it was just a bad night. Her stomach and intestines were revolting. Nothing was staying inside. So the next morning, we sent Brandon and Annie's families off at the port. Mom was just going to rest up. Just to be on the safe side, Dad decided that we could rehydrate Mom and get her started on an IV and get some fluids into her. The medical center on the ship was fairly well equipped. NOt only did they come to her room but they offered to run a few simple blood tests. The IV was slow going, but before we got more than a few hundred cc's into her we got the blood tests back. Her white count was precipitously low. Normally your white blood cell count tells you how sturdy your immune system is. A week ago hers was 8,000. Today it was under 500. Her new Chemo regimen had a dangerous side-effect. The ship told us we had to get off. Unfortunately, the ship was leaving in an hour. WE had to be off by 6:30. Half the family was on shore and we had no way to contact them. Cameron, Dad and I repacked 15 days worth of living and scrambled down to the tenders. The little shuttles that take you to port. With the help of a lot of crew we got her baggage down the gang plank and lifted her little chair down to the boat.
There is a decent hospital in Cabo San Lucas. Ameri Med caters to Americans but the small facility was clean and fairly modern. However Mom wasn't getting any better. She was vomiting anything still left her system, and the diarrhea wasn't helping. We hoped that getting her fluids and medicine could stabilize her and that we could get her back to Buffalo. Specifically closer to her oncologist, and a vital medicine that could help her white count rebound. It was now Christmas Eve and we were in a foreign country miles from those resources.
Dad hadn't slept in two nights. After midnight I insisted he get some sleep. We would have some important decisions to make in the next few days, more critical ones in the next morning. I stayed with Mom. Cameron smuggled a blanket and pillow from the Motel and I settled in. I have had a lot of sleepless Christmas Eve's in my life. tossing and turning, craning my ear to hear Santa. Ironically I spent the same Christmas Eve craining to hear the same figure. Listening for groans and whimpers. The sores in Mom's mouth kept her from swallowing, it had been two days since she had kept any nutrition down, in fact she couldn't even swallow water. So I stayed up with a wad of gauze dipping it in water and letting her suck on it for relief.
When we got on the ship we were talking about our 3 month plan. Dad was going to take medical leave, and move to Salt Lake. By the time morning come, we were talking about a one month plan. LIttle did we know that soon we would be speaking about days and hours instead of months and weeks. The writer Wallace Stegner described the west as a place where the optimism was greater than our water supply. Our problem was that our optimism was greater than our time supply.
Mom was still talking at this point. In the morning she said she just wanted to go home. She wanted to go to Buffalo. We thought we could get her to rebound, to improve. We thought we could rehydrate her and find medicine that would help her white blood count. Buy what our hearts told us is that she was miserable here, she wasn't improving, and she might never improve. WE looked at flights and what we saw was disheartening. 15 hours, two or three layover, and on Christmas day. Mom hadn't done well just sitting and I didn't think she had it in her. Dad took control in the hospital and checked her out against Medical advice. about 5 hours later we were on a plane to Salt Lake.
Uncle Lynn arranged for a Docotr to meet us at the Huntsman Cancer Institute. It turns out that the Chief of Oncology there was a good friend that went through medical school with Dad. We talk a lot about what goes into Medical research. I have been profoundly grateful for the money that has been donated for end of life care. However we didn't look at it that way. We were just looking for a place to rebound and recover.The Huntsman Cancer Hospital is one of the finest Hospitals I have ever been too, and we've had incredible care.
Non of Mom's major organs have failed, her liver is 60% cancer, but her lungs are working and kidneys are working, But fluid is filling her body. Death is a curious thing. I wish there was one thing we could point to and say "fix that" or a clock that gave us predictable time. But we are watching a shrinking clock where Months rapidly shrink to Days, and days become hours. But all day we wait.
Once the brothers were here we hoped for change. Instead on our first meeting we sat and talked about DNR orders, on the time that was rapidly disappearing. And mostly we wept. We originally wanted to take a day or to recover to allow visitors. Instead we realized now was time. If people wanted to say goodbye this was their chance.
So I wrote this in inches, in-between the flood of family, and visitors. And I came home to rest, and tonight we wait. Mom is barely here now. and we wait. We wait for little things, dripping away life. Statistics dipping and swelling.
They say that Cancer is the loving disease, because we get to say goodbye. But it is hard to say goodbye every day. Maybe I can get one more day, and say one more goodbye.
Posted by Damian at 11:57 AM