Unfortunately, nothing in life is nothing but; it is always something more. ~ William E. Barrett
I'm going to try to write up the whole score here and now. It is both marvelous and terrifying, but ultimately it just is.
I had the most enchanting and life-altering burning man that I never expected. I am no longer depressed for the first time since...oh, July of 2007. I am utterly and graciously over that awful, *shiny* hurdle.
I had almost two weeks of that magical self-renaissance before I got a call on September 12th saying that my dad, Jeffrey Lee Cramer, has a mass in his brain.
He'd had a horrible headache for four days before going to Urgent Care. I'm told that it was only because of his heart condition -> blood thinners (high cholesterol and mechanical heart valve) that they even did a scan of his brain and found the mass. That happens to be the same phone call in which I told my dad I wanted to move to NYC for a while. He said he thought that it was a great idea and "not many people have the chutzpah to pull it off."
He was put on Vicodin for the pain and it was effective though he was very stoned.
The next Monday he went to a Kaiser center in Fresno (he lives in SLO) where they did a full scan and met with a doctor.
A doctor in Fresno told him:
-It's small.
-It's nothing to worry about it.
-You'll have a removal surgery with the specialists in Redwood City instead of a biopsy.
They made an appointment for October 1st to have a consultation with the specialists and talk about the surgery. This seemed like a long time to wait and I didn't spend nearly enough time or effort trying to improve it...mostly because they'd said everything was fine. He was taken off the Vicodin and put on steroids which helped shrink the inflammation and removed the pain. Whoo!
After that it was just a waiting game. His stomach became distended and his limbs became weaker from the steroids. I went down for a visit and found out that he and his girlfriend, Suzie had been in the midst of breaking up for several months: a particularly lovely complication. He is/was supporting her financially and she was/is trying to take care of him and move out of the house at the same time.
I met my dad, my little brother, Tim, and Suzie at Kaiser Hospital in Redwood City. We went in to see the Head of Neurosurgery, Dr. Sheridan. We watched a video about the procedure and Dr. Sheridan told us that he was almost sure the tumor was a Glioma and thought it was likely to be a Glioblastoma but they couldn't say for sure until they took a sample. After the four of us threw each other cautious and shocked looks, I said, "I'm sorry, but you're saying 'sample,' would you consider this tumor small? He looked flustered and used a ruler tool on the computer screen to measure it before telling us "no." I told him that (and why) we'd been under a very different impression from someone in Fresno.
So then...it's:
-Not small.
-Something to worry about.
-Not going to be removed at all.
Um, shit shit shit.
Shit. Wait...shit. Then we moved to a different part of the hospital and spoke with Dr. Stovall who was friendly and loud (he's hard of hearing) and we liked her a lot. She explained treatment options and we decided on:
Daily chemo treatments
Localized Radiation
Avastin (Genentech designer drug with minimal testing that has done amazing stuff wrt shrinking tumors.)
At this point my Tim walked in with my elder brother, Zack. We liked Dr. Stovall and felt better about the day because we felt like things were being explained to us properly. Questions answered and all that.
We went to another part of the hospital for an EKG to check his heart. 'Lo and behold, he has an arterial flutter.
So then we went and talked to a cardiologist, Dr. Jayne, to talk about his heart. She explained what an A-Flutter is (basically, instead of going thump-thump thump-thump, your heart goes thump-thpppt thump-thpppt.)
That day took forever. We went to a deli across the street and talked for an hour or two afterward. Man, it was exhausting. Of course, at the end of it Zack realized that he'd locked his keys in his car. I waited with him in the parking garage and while we're sitting there he said, "So what happened?"
Apparently, Tim hadn't caught him up when he went downstairs to get him. Super. Zack was kind of upset, but still OK since we'd like Dr. Stovall so much and we all felt like he was getting good care.
A week later, October 8th, they open my papa's head. The surgery goes well.
As a short tangent: while he was in the operating room I was sitting there with Suzie in the waiting room. The woman doesn't much like silence in the conversation and, whattaya know, she spent a good hour trying to think of things to say. For whatever reason she decided that it was a great time to present her feelings about me as my father's. She said he didn't like my friends, my lifestyle, my location, or my job. She also said he'd told Tim all this. I was very upset. I didn't think it was true, but what the fuck, lady, you just told me that my dad hates me! I talked to Tim that evening and Tim scoffed. Consensus is that she was just projecting, angry, sad, upset, etc. I told my dad that I had issue with her, but I wasn't about to tell him what it was while she was still not moved out of his house and doing some of his care-taking. See you next Tuesday.
Tim arrived and a bit later we saw Dad for a few minutes; he looked good but very out of it. He wasn't in his room yet so we had to leave. We played the waiting game for a lot longer than expected, Zack arrived, and we finally got to see him about five hours later. They only allowed two people in at a time and Suzie and I went in to see him. He was no longer so out of it and he looked really frustrated. The look of frustration was actually pain and he began to cry because of the hurt. That was a hell of a feeling. Then he had a few ice chips to chew on and proceeded to throw up. That was a hell of a thing too. I don't think I'd ever seen my dad in so much pain in his life. I wanted to run, but I stayed because I didn't think my brothers would want to see what I was seeing. After about fifteen minutes the color returned to his face, he took a deep breath and told us he felt better. Suzie and I traded with my brothers.
He was ready to sleep after that so we all left. I stayed in the hotel room with Suzie, which was frustrating and interesting.
The next day he was to be released but just after we arrived he was told that he needed to stay for observation.
He needed to be monitored because they were taking him off of a blood coagulate and putting him back on blood thinners for his heart issues. None of us thought that was the optimal choice but we thought it was a good idea and that it was good care-taking on their part.
Yadda yadda yadda, they kept him for over two weeks, started him on chemo for a couple of days, and then told him he was good to go.
Back in SLO, there were complications with his care, and a clerical error from Redwood City kept him from getting his radiation treatment and appointments in SLO and Fresno. Fantastic. I was busy with wwww.katheegoesbald.blogspot.com so I talked to my dad/bro every 5-7 days or so. They found out that they'd been given a Rx for Ativan that was supposed to say "Up to 3 times a day" and not "Three times a day." Ugh. I think I talked to my dad on the one day he'd done taken that much Ativan and he sounded very stoned and very out of it. Now I no longer know if it was the Ativan or chemo or the tumor. A week later I talked to my little bro and it sounded like he was declining more rapidly, but, hey! that's what the chemo does, right? Tim and I began talking about my moving down there and one of us getting a job and one of us playing nurse. It seemed like a good plan.
On November 2nd I got an email from Suzie that said he's not doing well and, in part,
"He is experiencing problems with memory loss, constructing sentences and in general engaging in conversations. He is not able to read and understand what the words are saying and gets very frustrated. Even watching tv is a burden, as he cannot hear very well and it is impossible to follow a story line. He sleeps most of the day and night. He has recently become disoriented from time to time and then becomes agitated. He requires constant care to make sure he does not do something that could cause him harm."
This was big news to me. It had either not come through to me when talking to Tim or he'd gone downhill a lot faster than anyone expected. I tried to call, but got no answer. Luckily and oddly, I had left for Brass Tax over at Candlestick Park to help shave Kathee's head. It was already shaven when I arrived. I found Jenny Temple and Laura Stables and moments later got a call from Suzie who told me more about how my dad was and then began yelling at me about what I need to do and what Tim wasn't doing and hospice and care and she's moving and taking care of him and she's so sorry for us and someone needs to fucking step up and take responsibility, etc etc. None of that made me feel good and I basically ended up telling her thanks and shut up.
The following weekend, Alex came to town and we drove to SLO for the Booze for Boobs party and to see my father.
We arrived at 8 in the evening and my brother suggested I come over alone. I came over for several hours and saw firsthand just how far he had declined: a LOT. A lot of family was there. Uncle Harold, his wife, Kathy, Cousin Dave, his girlfriend, Vickie, Tim, Suzie, my dad, and Me. It became clear to me that I had not realized how alone I was feeling through all this. We were in a room crowded with family that was offering support. This made me feel really, really good. I found out that some doctors with more experience with Avastin had strongly recommended we not start him on it. With his heart condition, it would almost certainly mean an immediate stroke or heart attack. So ix-nay on that. We had a good time chatting and eventually it felt almost normal. It was nice. Everyone else went to bed and I went to the party.
The next morning my brother called and told me that everyone was having an important talk and that I should come over right away, so I did. There was a consensus among everyone that the best choice would be to take him off Chemo and not start radiation.
This was no shock, but instead a huge relief to me and (I think) everyone else too. I can't really pinpoint just when I first knew that this was the end of Dad. Maybe it was when I got that email, maybe it was when the doctor told him the tumor couldn't be removed, and maybe it was right off the bat when all we knew was that he had a mass in his brain. It's impossible to say, but I feel like I've been getting used to this idea for a while. It's not really working.
I promised my brother that I'd be back on Wednesday after Alex left, and so I made it happen...with a lot of help. I had decided that I must pack all my shit (since Jeff Schnitzer is moving back in and I'm being displaced from the Pesto Haus) in two days and figure out what to do with it. I lamented this to Liz on Monday at the softball game and she said she'd come help pack a box or two on Tuesday night. I told a couple of other close friends and she told several more and on Tuesday night, a bunch of amazing people came over, brought boxes, packed my clothes, shoved things in boxes, sealed, labeled, stacked and in the end about 15 people came to sing happy birthday, pack a box, eat some cake, watch a kid, get their hair cut by Alex, or just stop by for a hug and to sniff my undies. It was a sincerely moving evening and we were done with all the "work" within 3 hours. Liz, Alex, and me had some party favors and watched "Across the Universe." There couldn't have been a better end to my evening.
The next morning at 4:30am I dropped off Alex at the airport and, shit howdy, I miss that boy like it burns when I pee. I went back to sleep for a while, finished up the last of the packing, and then my mom and stepdad arrived and loaded all the boxes into their van. We had sushi with Jenny, and then I got entirely too strong a cup of coffee before saying goodbye to my parents. Jenny and I said goodbye and I don't think it's hit either of us that we won't be roomies anymore. She's been the best person to live with that I could have really never imagined. She's special, that Temple.
I took the longest drive of my life down to SLO and now here I am.
As of Thursday night, it's me, Tim, Zack, Uncle Harold, and Dad. Sometimes Suzie too, but we're going to have to have a talk with her soon. We're a decent crowd.
I alternate between fine, good, stressed, confused, terrified, and fine. It is a wholly bizarre experience and the kicker is (there are a lot of kickers) that it happens to almost everyone. Everyone goes through this and there's no fucking manual for it yet. Seriously, are there no people qualified to be a death copywriter? *huff*
Much as I feel like the world is falling apart because my phenomenon of a father is no longer going to exist, I'm still capable of remembering that I have the power to exercise some control over it. http://fearlesspookie.livejournal.com/64361.html Or over my attitude...some of the time. I'm ok.
God, that took almost 5 days to write. I'll tell you more later. It's ugly, it's horrible, it's dumb, but I'll be OK. It is what it is...just on a more intense level than I expected to comprehend in the next ten years. Love you guys. Hope you know that. You better.
I had the most enchanting and life-altering burning man that I never expected. I am no longer depressed for the first time since...oh, July of 2007. I am utterly and graciously over that awful, *shiny* hurdle.
I had almost two weeks of that magical self-renaissance before I got a call on September 12th saying that my dad, Jeffrey Lee Cramer, has a mass in his brain.
He'd had a horrible headache for four days before going to Urgent Care. I'm told that it was only because of his heart condition -> blood thinners (high cholesterol and mechanical heart valve) that they even did a scan of his brain and found the mass. That happens to be the same phone call in which I told my dad I wanted to move to NYC for a while. He said he thought that it was a great idea and "not many people have the chutzpah to pull it off."
He was put on Vicodin for the pain and it was effective though he was very stoned.
The next Monday he went to a Kaiser center in Fresno (he lives in SLO) where they did a full scan and met with a doctor.
A doctor in Fresno told him:
-It's small.
-It's nothing to worry about it.
-You'll have a removal surgery with the specialists in Redwood City instead of a biopsy.
They made an appointment for October 1st to have a consultation with the specialists and talk about the surgery. This seemed like a long time to wait and I didn't spend nearly enough time or effort trying to improve it...mostly because they'd said everything was fine. He was taken off the Vicodin and put on steroids which helped shrink the inflammation and removed the pain. Whoo!
After that it was just a waiting game. His stomach became distended and his limbs became weaker from the steroids. I went down for a visit and found out that he and his girlfriend, Suzie had been in the midst of breaking up for several months: a particularly lovely complication. He is/was supporting her financially and she was/is trying to take care of him and move out of the house at the same time.
I met my dad, my little brother, Tim, and Suzie at Kaiser Hospital in Redwood City. We went in to see the Head of Neurosurgery, Dr. Sheridan. We watched a video about the procedure and Dr. Sheridan told us that he was almost sure the tumor was a Glioma and thought it was likely to be a Glioblastoma but they couldn't say for sure until they took a sample. After the four of us threw each other cautious and shocked looks, I said, "I'm sorry, but you're saying 'sample,' would you consider this tumor small? He looked flustered and used a ruler tool on the computer screen to measure it before telling us "no." I told him that (and why) we'd been under a very different impression from someone in Fresno.
So then...it's:
-Not small.
-Something to worry about.
-Not going to be removed at all.
Um, shit shit shit.
Shit. Wait...shit. Then we moved to a different part of the hospital and spoke with Dr. Stovall who was friendly and loud (he's hard of hearing) and we liked her a lot. She explained treatment options and we decided on:
Daily chemo treatments
Localized Radiation
Avastin (Genentech designer drug with minimal testing that has done amazing stuff wrt shrinking tumors.)
At this point my Tim walked in with my elder brother, Zack. We liked Dr. Stovall and felt better about the day because we felt like things were being explained to us properly. Questions answered and all that.
We went to another part of the hospital for an EKG to check his heart. 'Lo and behold, he has an arterial flutter.
So then we went and talked to a cardiologist, Dr. Jayne, to talk about his heart. She explained what an A-Flutter is (basically, instead of going thump-thump thump-thump, your heart goes thump-thpppt thump-thpppt.)
That day took forever. We went to a deli across the street and talked for an hour or two afterward. Man, it was exhausting. Of course, at the end of it Zack realized that he'd locked his keys in his car. I waited with him in the parking garage and while we're sitting there he said, "So what happened?"
Apparently, Tim hadn't caught him up when he went downstairs to get him. Super. Zack was kind of upset, but still OK since we'd like Dr. Stovall so much and we all felt like he was getting good care.
A week later, October 8th, they open my papa's head. The surgery goes well.
As a short tangent: while he was in the operating room I was sitting there with Suzie in the waiting room. The woman doesn't much like silence in the conversation and, whattaya know, she spent a good hour trying to think of things to say. For whatever reason she decided that it was a great time to present her feelings about me as my father's. She said he didn't like my friends, my lifestyle, my location, or my job. She also said he'd told Tim all this. I was very upset. I didn't think it was true, but what the fuck, lady, you just told me that my dad hates me! I talked to Tim that evening and Tim scoffed. Consensus is that she was just projecting, angry, sad, upset, etc. I told my dad that I had issue with her, but I wasn't about to tell him what it was while she was still not moved out of his house and doing some of his care-taking. See you next Tuesday.
Tim arrived and a bit later we saw Dad for a few minutes; he looked good but very out of it. He wasn't in his room yet so we had to leave. We played the waiting game for a lot longer than expected, Zack arrived, and we finally got to see him about five hours later. They only allowed two people in at a time and Suzie and I went in to see him. He was no longer so out of it and he looked really frustrated. The look of frustration was actually pain and he began to cry because of the hurt. That was a hell of a feeling. Then he had a few ice chips to chew on and proceeded to throw up. That was a hell of a thing too. I don't think I'd ever seen my dad in so much pain in his life. I wanted to run, but I stayed because I didn't think my brothers would want to see what I was seeing. After about fifteen minutes the color returned to his face, he took a deep breath and told us he felt better. Suzie and I traded with my brothers.
He was ready to sleep after that so we all left. I stayed in the hotel room with Suzie, which was frustrating and interesting.
The next day he was to be released but just after we arrived he was told that he needed to stay for observation.
He needed to be monitored because they were taking him off of a blood coagulate and putting him back on blood thinners for his heart issues. None of us thought that was the optimal choice but we thought it was a good idea and that it was good care-taking on their part.
Yadda yadda yadda, they kept him for over two weeks, started him on chemo for a couple of days, and then told him he was good to go.
Back in SLO, there were complications with his care, and a clerical error from Redwood City kept him from getting his radiation treatment and appointments in SLO and Fresno. Fantastic. I was busy with wwww.katheegoesbald.blogspot.com so I talked to my dad/bro every 5-7 days or so. They found out that they'd been given a Rx for Ativan that was supposed to say "Up to 3 times a day" and not "Three times a day." Ugh. I think I talked to my dad on the one day he'd done taken that much Ativan and he sounded very stoned and very out of it. Now I no longer know if it was the Ativan or chemo or the tumor. A week later I talked to my little bro and it sounded like he was declining more rapidly, but, hey! that's what the chemo does, right? Tim and I began talking about my moving down there and one of us getting a job and one of us playing nurse. It seemed like a good plan.
On November 2nd I got an email from Suzie that said he's not doing well and, in part,
"He is experiencing problems with memory loss, constructing sentences and in general engaging in conversations. He is not able to read and understand what the words are saying and gets very frustrated. Even watching tv is a burden, as he cannot hear very well and it is impossible to follow a story line. He sleeps most of the day and night. He has recently become disoriented from time to time and then becomes agitated. He requires constant care to make sure he does not do something that could cause him harm."
This was big news to me. It had either not come through to me when talking to Tim or he'd gone downhill a lot faster than anyone expected. I tried to call, but got no answer. Luckily and oddly, I had left for Brass Tax over at Candlestick Park to help shave Kathee's head. It was already shaven when I arrived. I found Jenny Temple and Laura Stables and moments later got a call from Suzie who told me more about how my dad was and then began yelling at me about what I need to do and what Tim wasn't doing and hospice and care and she's moving and taking care of him and she's so sorry for us and someone needs to fucking step up and take responsibility, etc etc. None of that made me feel good and I basically ended up telling her thanks and shut up.
The following weekend, Alex came to town and we drove to SLO for the Booze for Boobs party and to see my father.
We arrived at 8 in the evening and my brother suggested I come over alone. I came over for several hours and saw firsthand just how far he had declined: a LOT. A lot of family was there. Uncle Harold, his wife, Kathy, Cousin Dave, his girlfriend, Vickie, Tim, Suzie, my dad, and Me. It became clear to me that I had not realized how alone I was feeling through all this. We were in a room crowded with family that was offering support. This made me feel really, really good. I found out that some doctors with more experience with Avastin had strongly recommended we not start him on it. With his heart condition, it would almost certainly mean an immediate stroke or heart attack. So ix-nay on that. We had a good time chatting and eventually it felt almost normal. It was nice. Everyone else went to bed and I went to the party.
The next morning my brother called and told me that everyone was having an important talk and that I should come over right away, so I did. There was a consensus among everyone that the best choice would be to take him off Chemo and not start radiation.
This was no shock, but instead a huge relief to me and (I think) everyone else too. I can't really pinpoint just when I first knew that this was the end of Dad. Maybe it was when I got that email, maybe it was when the doctor told him the tumor couldn't be removed, and maybe it was right off the bat when all we knew was that he had a mass in his brain. It's impossible to say, but I feel like I've been getting used to this idea for a while. It's not really working.
I promised my brother that I'd be back on Wednesday after Alex left, and so I made it happen...with a lot of help. I had decided that I must pack all my shit (since Jeff Schnitzer is moving back in and I'm being displaced from the Pesto Haus) in two days and figure out what to do with it. I lamented this to Liz on Monday at the softball game and she said she'd come help pack a box or two on Tuesday night. I told a couple of other close friends and she told several more and on Tuesday night, a bunch of amazing people came over, brought boxes, packed my clothes, shoved things in boxes, sealed, labeled, stacked and in the end about 15 people came to sing happy birthday, pack a box, eat some cake, watch a kid, get their hair cut by Alex, or just stop by for a hug and to sniff my undies. It was a sincerely moving evening and we were done with all the "work" within 3 hours. Liz, Alex, and me had some party favors and watched "Across the Universe." There couldn't have been a better end to my evening.
The next morning at 4:30am I dropped off Alex at the airport and, shit howdy, I miss that boy like it burns when I pee. I went back to sleep for a while, finished up the last of the packing, and then my mom and stepdad arrived and loaded all the boxes into their van. We had sushi with Jenny, and then I got entirely too strong a cup of coffee before saying goodbye to my parents. Jenny and I said goodbye and I don't think it's hit either of us that we won't be roomies anymore. She's been the best person to live with that I could have really never imagined. She's special, that Temple.
I took the longest drive of my life down to SLO and now here I am.
As of Thursday night, it's me, Tim, Zack, Uncle Harold, and Dad. Sometimes Suzie too, but we're going to have to have a talk with her soon. We're a decent crowd.
I alternate between fine, good, stressed, confused, terrified, and fine. It is a wholly bizarre experience and the kicker is (there are a lot of kickers) that it happens to almost everyone. Everyone goes through this and there's no fucking manual for it yet. Seriously, are there no people qualified to be a death copywriter? *huff*
Much as I feel like the world is falling apart because my phenomenon of a father is no longer going to exist, I'm still capable of remembering that I have the power to exercise some control over it. http://fearlesspookie.livejournal.com/64361.html Or over my attitude...some of the time. I'm ok.
God, that took almost 5 days to write. I'll tell you more later. It's ugly, it's horrible, it's dumb, but I'll be OK. It is what it is...just on a more intense level than I expected to comprehend in the next ten years. Love you guys. Hope you know that. You better.