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| Willie sleeping while the angels painted on the wall watchover |
We are staying at a hotel that our social worker set up for us. They offer a special rate for Stanford patients and the whole place is crawling with balding people in pajamas with IV lines and filter masks. We feel right at home. The decor of the hotel is bizarre. The lobby is done in an old Victorian style with floral wallpaper, scarlet carpet and fringed lampshades. There are Barbie Dolls dressed in Victorian era clothing in glass cases along the walls and the entire room smells of Grandma's perfume. We checked into our room and were met by much of the same decor. The guy at the front desk told us that an artist from Berkley came through the hotel years ago and painted images in each room and murals along the outside of the building. I cant judge the art because I am no artist myself, but I can say that it is fascinating, at best.
We woke up bright and early Monday morning and arrived at the cancer center just before 7AM. Our nurse was nice with a quirky sense of humor that put her on the edge of the crazy line. She has been working at Stanford for 25 years and administering daily chemo treatments is second nature to her now. She talked us through the treatment and reminded us of every side effect that may occur. It is scary to hear them all detailed out in front of you. It brought up memories of the first time we heard these warnings over a month ago. At least now we have been through it once and know how Willie reacts to chemo. She explained that with every round of chemo, the body loses some of its defenses. We told her how well he had done with is first round and that we are expecting similar results this round.
"Willie may have done well with his first round, but his body is not in the same shape it was before," she said "chemo is offensive to the body and each round opens up a greater risk for infections."
I know she's doing her job, but I felt like we were being lectured. I think it's good to know all the risks and to move forward with caution and hope. That has got us this far, so I prefer to remain positive and hope for the best, rather than wait for the worst to happen.
The treatment area is a strange place. The room is a large square with 6 reclining chairs set up around the perimeter with each chair facing inward. The chairs are an ugly brown/yellow color and made from fake leather. They look like they may be comfortable until you sit in them and realize it's not a place you would want to stay for an extended amount of time. Each chair has a thin curtain surrounding it that can be pulled over to provide the small amount of privacy that a layer of fabric can provide.
None of the privacy curtains were pulled when we arrived and we all sat together in one room, each family stealing glances at the others. It's impossible not to look around in a room like that. My eyes wandered from one family to the next as I noted that we all seemed to be in the same circumstance. Each chair was filled with a patient who was balding and sporting a PICC line bandage similar to Willie's. Each patient had a caregiver with them that had a look of exhaustion and anxiety in their eyes that I thought I was above, be doubt that I am.
The demographic in the room was humbling. Across from us was a young Hispanic guy, next to him, and elderly couple; the next chairs over held and middle aged African American woman then an young Asian girl. The final chair was filled by a young Japanese guy who looked to be in his early twenties. He was the only person in the room to arrive alone and remain alone throughout the treatment. I couldn't help but wonder about his circumstances. I found my eyes wandering over toward him several times out of concern and curiosity.
Our nurse hooked Will up to the chemo IV and the drip down began. The chemo is administered over 3 hours and it seemed to take forever in this setting. Two of the chairs emptied and filled throughout the morning as the people received quick treatments and left, but the 4 of us remained. After talking with the nurse we learned that Will and the 3 others were receiving identical treatments. We were all in this together.
As the morning went on, I struck up a conversation with the Hispanic family next to us. We learned that he had been diagnosed with AML just two days after Willie and had walked an almost identical path. He had also gone to the Dr. with a fever and a tooth infection when he found out it was AML.
"They had to pull 4 of my teeth!" he said, as if it was the most unbelievable thing in the world.
We laughed as we told him Will had also had 4 teeth pulled.
He is also looking into a getting a bone marrow transplant but doesn't know if his siblings are a match yet. We wished him luck and told them that we hope right along with them that one of this siblings will be a match. It's amazing how cancer transcends every barrier. It smoothes over all differences and puts everybody on the same playing field.
The "3 hour treatment" took close to 4 hours and we left just before 11 AM. We were both in a downer mood. It's nice talk with people who are going through the same thinhg as us, but it is also depressing. We have learned that everyone handles cancer differently. Every person experiences different symptoms and has a different experience from someone else who has the same diagnosis. There is also a wide spectrum on emotions and attitudes that accompany the diagnosis, most which are not too pleasant. We prefer to stay in our own bubble of optimistic hope.
We came back to the hotel and took a nap on our queen size bed. I mention the size of the bed because it is the topic of conversation in our world right now. At home we have a California king so downgrading to a queen is leaving Willie feeling squished. I kind of like the squish. Our bed at home is so big that we don't even see each other during the night. Kona, our 80 lb dog, takes advantage of the space and usually ends up snuggled between us. She has recently discovered pillows and likes to rest her weary head on a pillow after a long day of hard dog work.
The last place we encountered a bed this small was when we worked at the camp in Vermont. I had a twin bed in the counselors cabin that I was completely happy with. Willie has always liked his beds to be big enough to sleep 3 of him and he somehow found a queen sized mattress on the campground. He set it up in a green cabin that was set a way back from the counselors cabin. There were two rooms in the cabin and he shared the rickety space with the boys hill director. The entire cabin leaned to one side and the floor boards creaked with every step as if the entire shack was about to collapse. It had plywood walls and an A frame roof that housed all sorts of flying creatures. The first time I entered the cabin to bring Willie his lunch I stood at the back door and set the tray on his bed. I was afraid that if I crossed the threshold, my weight would throw off the balance of the cabin and bring it crashing down. I also wasn't certain that I wanted to remain in the tight quarters with the brooding Willie Beavers.
That uncertainty wore off and soon he was inviting me to sit on the bed as he ate his lunch. I remember sitting at the foot of the bed, feeling the scratchy wool of his woven blanket as it rubbed on my legs. The blanket looked to be 10 years old and featured pictures of deer in the forest. It was a most fitting image for the rustic cabin.
On night after I delivered dinner I laid back on the bed and heaved a sigh of relief after a long day of work. I observed the rafters above the bed and immediately sat up
"Are those spiders?!" I nearly shouted, pointing up at the ceiling.
"Yeah Missy," he said casually as he took another bite of food.
I was alarmed at his lack of concern
"You just let them stay there?!" I asked, but it was more of an accusation than a question.
"They're not hurting anyone," he said "And they help catch the bugs."
I shivered as I felt the creepy crawly legs of a thousand imaginary spiders craw up my back. The spiders living on his ceiling were not your average spider. These were HUGE. They were about the size of a Daddy Long Leg, but they didn't carry the innocence of that spider. Their legs were thick and black and spanned several inches. The body was bigger than the long leg variety and their backs had a strange iridescent color to them that made them look purple and green depending on the light. They had built a maze of webs in the rafters and I could see hundreds of mummified flies caught in their traps.
I was grossed out. I looked at Will as if there was something seriously wrong in his head.
"So you're not going to do anything about them?" I asked in disgust.
"Nope." He answered.
"Some mornings I wake up and they are crawling on my face," he said "It feels so weird, they pump up and down with their legs like they are trying to suck the warmth out of me because they're cold."
He put his hand on my arm and pulled his fingers upward "It feels kind of like that."
I shivered.
He laughed.
I had to get out of there immediately.
I left that night and informed him that I would not be coming back until he sprayed for the spiders. He got a can of spider spray to appease me, but I later learned that he never used it.
If that wasn't bad enough, a few days later I found out about the bats. There were a couple that lived in the rafters and came in and out at night. Willie felt these weren't a problem either, but I was sure I was going to get bit by one and get rabies.
Overtime he has changed my opinion of spiders, but not bats. I am now happy to let a spider keep a web by our back door to collect the bugs that would enter if it wasn't there. I even let a few webs stay by the light in the living room to catch the bugs that gather there, but that is where I draw the line. There are no spiders allowed in our bedroom and definitely NO BATS!
Luckily, this hotel queen sized bed doesn't come with a ceiling full of spiders. Although, last night when we laid in bed Willie was sure he had felt a spider on his face. It must be old memories from queen sized beds of yesteryear!
Willie's second chemo treatment was uneventful last night and we're looking forward to 4 more treatments of the same. The effects of the chemo don't kick in until 7-10 days after the first treatment so it won't be until the middle of next week until his counts start to drop. That is when we need to be very careful to watch his temperatures and keep him isolated from company. We are going to need to be diligent in monitoring his temperature and keeping our home sterile. That is the piece that I will miss about being in the hospital. At least there they kept track of his temps and treated his fevers when they happened. His fevers were always short lived though so we hope for more of the same.
This morning he had a lung function test so the insurance can approve them to run the donor bank. You have to be in good physical condition for them to approve the running of the bank since it would be a waste of funding to look for a match for a person who couldn't handle the transplant. The test was short and involved him breathing into a tube that was attached to a computer. He passed with flying colors so we hope they can rush the insurance and start running the bank soon. Please keep the prayers and good thoughts coming that we can find a match soon!
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