I just returned from my appointment with Dr. Scott following up on my recent PET scan. My pre-appointment procedures were less than stellar. I really missed Dawn when they first needed to take some blood. Dawn was on lunch break and her sub could not manage to get blood from my right arm and each poke adjustment stung pretty good. The left arm proved better (though it stung too) and I was a pathetic sight with bandage-covered cotton balls on each arm. And then at the weigh-in we discovered I'd dropped another 5 pounds. Mary predicted this and my current belt size backed it up.
Dr. Scott had all good news. The PET scan revealed no cancer activity whatsoever. The liver tumor had not grown and also did not light up at all on the scan. Nothing abnormal lit up in my chest either. The chemotherapy was clearly doing what it was supposed to and Dr.Scott said that considering the doses, I was handling it very well too. Beyond the nausea, none of the more serious side effects had manifested.
He decided to give me an additional week off chemo to try and build up some weight and then I will start again on September 10 with two more rounds (5 weeks) but at a lower dosage of the nasty infused chemicals.
I wish I felt like I could eat more food! It seems progressive in that I feel like eating less as the day wears on. I'm going to up my overnight liquid food pump diet to 4 cans and try harder to eat more lunch and dinner. Solid foods are still difficult so I'll be concentrating on cream soups, fruit and my new favorite beverage, V8. I need to work on my exercise regimen as well. I need to get on my bike more often while the season still permits it.
Friday, August 31, 2012
Saturday, August 25, 2012
Nausea reprieve
My early morning PET Scan on Friday was the exciting culmination of a week defined by sitting in a chair wishing food tasted better. A hospital lab visit was getting out of the house after all and feeling like some forward momentum. Abby agreed to sacrifice her last Friday "sleeping-in" opportunity before the GVSU semester to drive me to St. Mary's at 6:45a.m. Normally I would not need a driver for a PET scan but they had me taking some Benedryl to counteract allergies to the dye that they use. There is also an hour and a half of absorbing a radioactive isotope through an I.V. that would give us some father/daughter bonding time and a chance to watch a DVD together.
There was a minor SNAFU at check-in as I was indeed on the schedule but there appeared not to be an authorization code available from the insurance company. Probably nothing, but I had to first agree to be responsible for the whole cost if for some reason Priority Health didn't want to pay. This is the third such "Auth code" issue that has come up lately. It was seeming for a while like my insurance experience was going to be all good but now I'm feeling a little passive aggression coming from them. I recently got the bill for my whole esophagectomy surgery and resulting hospital stay (5 figures) saying that coverage was denied due to lack of a prior authorization code from my doctor. Since it is supposed to be 100% covered, I'm choosing not to worry about that one. And then I got a bill for $720 for a denied injection I received during the surgery to fix my paralyzed vocal cord. Apparently my doctor has a choice of 3 or 4 cellulose stiffening agents he could have used and he picked one (the one he said that he always uses) that Priority Health says is not on their list. It is going to take appeals and red tape and I may end up just paying for that one. It seems strange to me that I can go into an approved operation with an approved doctor at an approved hospital and then someone scrutinizes the bill afterward to see what they can avoid paying. Isn't the point of an HMO that this stuff is worked out ahead of time?
Abby and I watched "Easy A" (a movie with a smart script that is better than it looks judging from previews) and ordered breakfast from the menu for after the scan. All went well and I had no allergic reaction this time, thanks to the pre-meds. So next week, Dr. Scott will have a nice 3D picture from "eye-to thigh" of my body in its current state of cancer metastases. That appointment is on Friday and we hope to see no hot spots lit up on the scan. The only known spot is currently on my liver and possibly some lymphoma residuals in my mediastinum region.
I'm bracing myself for the reality that whether the cancer has grown or shrunk, it probably means more chemotherapy. My nurses keep mentioning that I am carrying a heavy load in the nausea side-effect category of the drugs I'm on. True, that. I was grateful to be taken off the Xeloda earlier in the week and it has taken until this morning to feel like the nausea phase has cleared my system. I woke up with an appetite and enjoyed a pretty good-sized smoothie for breakfast and when Chicago friends Dan and Mary and their son Josh dropped in late morning, I discovered I was ready for some lunch and I finally got to enjoy that baba ganoush I had made earlier in the week along with a fresh cucumber that the neighbors delivered from their garden. I even had some bagel with cream cheese. Food has not tasted this good in a long while!
The new physical effect I am experiencing is body weakness. Maybe it is an iron deficiency or perhaps too much sedentary behavior. But I now have to stand up more carefully to avoid become lightheaded and I feel like my muscles don't have the strength to do much more than fundamental tasks. I feel pretty good sitting in a chair but moving around is now something that I pay attention to. With the passing of the nausea also comes the passing of the grumpy, anti-social stage so I am happy to be feeling like interacting with people again.
I'm also looking forward to the esophageal dilation I will be getting on Tuesday. I've lost count of how many I've had (7 or 8?) but they always leave me with a larger swallow capacity. It has been 6 weeks since my last one. That, coupled with the extended chemo vacation and a presumed end to the chronic "thrush" outbreak may mean some expanded food experiences; something I crave more than anything else.
There was a minor SNAFU at check-in as I was indeed on the schedule but there appeared not to be an authorization code available from the insurance company. Probably nothing, but I had to first agree to be responsible for the whole cost if for some reason Priority Health didn't want to pay. This is the third such "Auth code" issue that has come up lately. It was seeming for a while like my insurance experience was going to be all good but now I'm feeling a little passive aggression coming from them. I recently got the bill for my whole esophagectomy surgery and resulting hospital stay (5 figures) saying that coverage was denied due to lack of a prior authorization code from my doctor. Since it is supposed to be 100% covered, I'm choosing not to worry about that one. And then I got a bill for $720 for a denied injection I received during the surgery to fix my paralyzed vocal cord. Apparently my doctor has a choice of 3 or 4 cellulose stiffening agents he could have used and he picked one (the one he said that he always uses) that Priority Health says is not on their list. It is going to take appeals and red tape and I may end up just paying for that one. It seems strange to me that I can go into an approved operation with an approved doctor at an approved hospital and then someone scrutinizes the bill afterward to see what they can avoid paying. Isn't the point of an HMO that this stuff is worked out ahead of time?
Abby and I watched "Easy A" (a movie with a smart script that is better than it looks judging from previews) and ordered breakfast from the menu for after the scan. All went well and I had no allergic reaction this time, thanks to the pre-meds. So next week, Dr. Scott will have a nice 3D picture from "eye-to thigh" of my body in its current state of cancer metastases. That appointment is on Friday and we hope to see no hot spots lit up on the scan. The only known spot is currently on my liver and possibly some lymphoma residuals in my mediastinum region.
I'm bracing myself for the reality that whether the cancer has grown or shrunk, it probably means more chemotherapy. My nurses keep mentioning that I am carrying a heavy load in the nausea side-effect category of the drugs I'm on. True, that. I was grateful to be taken off the Xeloda earlier in the week and it has taken until this morning to feel like the nausea phase has cleared my system. I woke up with an appetite and enjoyed a pretty good-sized smoothie for breakfast and when Chicago friends Dan and Mary and their son Josh dropped in late morning, I discovered I was ready for some lunch and I finally got to enjoy that baba ganoush I had made earlier in the week along with a fresh cucumber that the neighbors delivered from their garden. I even had some bagel with cream cheese. Food has not tasted this good in a long while!
The new physical effect I am experiencing is body weakness. Maybe it is an iron deficiency or perhaps too much sedentary behavior. But I now have to stand up more carefully to avoid become lightheaded and I feel like my muscles don't have the strength to do much more than fundamental tasks. I feel pretty good sitting in a chair but moving around is now something that I pay attention to. With the passing of the nausea also comes the passing of the grumpy, anti-social stage so I am happy to be feeling like interacting with people again.
I'm also looking forward to the esophageal dilation I will be getting on Tuesday. I've lost count of how many I've had (7 or 8?) but they always leave me with a larger swallow capacity. It has been 6 weeks since my last one. That, coupled with the extended chemo vacation and a presumed end to the chronic "thrush" outbreak may mean some expanded food experiences; something I crave more than anything else.
Thursday, August 23, 2012
Finding ground again
I saw a bald eagle the other day. It was very much a surprise. I've been waking up very early lately and upon mentioning this to my friend Stephen, he offered to scoop me up on one of his fly-fishing jags some morning. I've been trying to say "yes" to more suggestions of getting out of the house and into nature. Sitting in a comfortable chair in foggy morning light alongside a quiet river held some appeal for me. I was barely settled in my favorite butterfly bag chair along the upper Rogue River when the giant raptor wings entered my peripheral vision; dipping under the river tree line, 30 feet away and exposing the striking black and white shapes that only define one kind of bird. My camera was at my side, zipped up tightly in the carrying bag. There would be no second pass. The experience was only meant for the awake individual, not the documentary producer.
I've been struggling to write another blog entry for a few days now. I wake up early thinking I know what I want to talk about. I end up just starring at my screen. I feel lousy. I suppose it is the cumulative nature of chemotherapy treatments and it is definitely compounded by an annoying mouth condition, which won't go away, and makes eating a constant disappointment. I can feel my energy levels dropping and I realize that this energy is the thing that makes me feel like a robust living person, no matter what the discomforts are. I can't help going to a place where I imagine that this sapping of energy is what dying feels like. Is my body shutting down? Why does my chest fell so tight? Inklings of fear and paranoia creep into my psyche. I look in a mirror and find I still look pretty damned good. Definitely not dying. Still, just getting out of a chair feels like an effort and conserving breath seems like a good idea. The flirtation with depression has begun.
Yesterday morning I sat out on the deck reading in a very comfortable chair with a breeze and perfect temperatures. As lunchtime approached, my neighbors seemed to have launched into a robust pool party. There were multiple barking dogs and children with much splashing and shouting. In between the commotion I could hear and smell the preparation of hotdogs. Hotdogs sounded so good to me! Fixed just the way you want them, maybe with just a stripe of mustard this time or perhaps sweetened up with some pickle relish. My culinary life has strayed so far from the possibility of a simple hot dog. My kids are vegetarians, my wife a celiac and me, a gastronomical gimp with no stomach capacity to speak of. I imagined eating a whole hotdog and then felt some anger at the impossibility of the fantasy. In the refrigerator I had a ready-to-bake, homemade gluten-free veggie lasagna and a fresh batch of baba ganousch made from an eggplant out of my other neighbor's garden -superior foods, no doubt- but a junky frankfurter squirting out of a processed white bun never sounded better.
I don't like this new normal at all. And yet finding peace there is key. Just give me a little more energy and a little more stomach capacity and I can get there! In the mean time I'm going to be a little grumpy and anti-social and it will take some time to get me pried out of this chair.
The good news is that Dr. Scott took me off the Xeloda on Monday, a week early, to help my mouth and nausea recover. I hope my appetite and energy will soon follow. Today I'm on a 24-hour no-carb diet in preparation for Friday's PET Scan. The idea is that you give your body no carb reserves so that when they inject you with glucose during the scan, your hungriest cells, the cancer cells, all go "nom, nom, nom" and light up a radioactive isotope in a 3D picture. Then you have a map of where all the cancer is living in your body. This will help determine the effectiveness of the chemo I'm on. In a week I'll have it interpreted and we'll know some things.
One last thing I wanted to mention. I bought myself a watch. I've always been sort of a "watch" guy. It is a gadget that pins you down to a moment. Being in the moment is an important reminder and having a Wenger Swiss watch, leather strap, quartz movement, water resistant and accurate to the second with a face large enough that I can read the date on it, makes me just a little bit happy.
It's 9:27a.m. and 10 seconds on August 23 and I'm off to try and swallow some plain Greek yogurt.
I've been struggling to write another blog entry for a few days now. I wake up early thinking I know what I want to talk about. I end up just starring at my screen. I feel lousy. I suppose it is the cumulative nature of chemotherapy treatments and it is definitely compounded by an annoying mouth condition, which won't go away, and makes eating a constant disappointment. I can feel my energy levels dropping and I realize that this energy is the thing that makes me feel like a robust living person, no matter what the discomforts are. I can't help going to a place where I imagine that this sapping of energy is what dying feels like. Is my body shutting down? Why does my chest fell so tight? Inklings of fear and paranoia creep into my psyche. I look in a mirror and find I still look pretty damned good. Definitely not dying. Still, just getting out of a chair feels like an effort and conserving breath seems like a good idea. The flirtation with depression has begun.
Yesterday morning I sat out on the deck reading in a very comfortable chair with a breeze and perfect temperatures. As lunchtime approached, my neighbors seemed to have launched into a robust pool party. There were multiple barking dogs and children with much splashing and shouting. In between the commotion I could hear and smell the preparation of hotdogs. Hotdogs sounded so good to me! Fixed just the way you want them, maybe with just a stripe of mustard this time or perhaps sweetened up with some pickle relish. My culinary life has strayed so far from the possibility of a simple hot dog. My kids are vegetarians, my wife a celiac and me, a gastronomical gimp with no stomach capacity to speak of. I imagined eating a whole hotdog and then felt some anger at the impossibility of the fantasy. In the refrigerator I had a ready-to-bake, homemade gluten-free veggie lasagna and a fresh batch of baba ganousch made from an eggplant out of my other neighbor's garden -superior foods, no doubt- but a junky frankfurter squirting out of a processed white bun never sounded better.
I don't like this new normal at all. And yet finding peace there is key. Just give me a little more energy and a little more stomach capacity and I can get there! In the mean time I'm going to be a little grumpy and anti-social and it will take some time to get me pried out of this chair.
The good news is that Dr. Scott took me off the Xeloda on Monday, a week early, to help my mouth and nausea recover. I hope my appetite and energy will soon follow. Today I'm on a 24-hour no-carb diet in preparation for Friday's PET Scan. The idea is that you give your body no carb reserves so that when they inject you with glucose during the scan, your hungriest cells, the cancer cells, all go "nom, nom, nom" and light up a radioactive isotope in a 3D picture. Then you have a map of where all the cancer is living in your body. This will help determine the effectiveness of the chemo I'm on. In a week I'll have it interpreted and we'll know some things.
One last thing I wanted to mention. I bought myself a watch. I've always been sort of a "watch" guy. It is a gadget that pins you down to a moment. Being in the moment is an important reminder and having a Wenger Swiss watch, leather strap, quartz movement, water resistant and accurate to the second with a face large enough that I can read the date on it, makes me just a little bit happy.
It's 9:27a.m. and 10 seconds on August 23 and I'm off to try and swallow some plain Greek yogurt.
Tuesday, August 14, 2012
Animal stories
Not much new to report so I'll regale you with a couple of animal stories.
Last week we had that one really rainy day. There was a giant cloud mass that was rotating counterclockwise with its center right on Grand Rapids for a change. Umbrellas were dug out from way in the back of closets. All the brown lawns were quite happy but havoc was wreaked on the roadways. A trip to the grocery store was re-routed because of giant flooded areas across broad stretches of major streets.
I went upstairs in the mid-afternoon to try and grab a nap, due to another early, early wake-up time. (I had spent a couple hours lounging on the 3-season porch starting about 4:00 am. The sounds of the rain had been lovely atmosphere for reading. ) So I settled into my bed, which is up on the second floor of our house. Out of the corner of my eye I saw some movement on the tiny, brick-width ledge outside the window. It was a grey squirrel, lounging and grooming for a nap out of the rain. He was facing out into the weather with his back against the window. (I was close enough to ascertain it was a "he".) I watched him up close for a while and got to thinking it would be interesting to see how he would behave, going from a relaxed state to suddenly realizing he was in close proximity to a top-of-the-food-chain predator.
I placed my face inches away from the glass and showed some teeth. He was completely oblivious, facing the other direction. He was going to sleep, which is what I really needed to do. My jaw muscles were starting to feel some fatigue so I finally resorted to a little tap on the window. The squirrel turned to look. There was sort of a surprised double take... for both of us. And then he did something I did not expect. He began to furiously paw at the window right at my face. I'm pretty sure he wanted me to just go away. I eventually got the message and slunk back to bed. He curled back up and went to sleep. I eventually did the same.
Story number two: My friend Lee came over to hang out for a couple of days this past weekend. He had driven over from his new loft apartment in downtown Milwaukee via the scenic U.P. route, along with his dog, Chui (pronounced "chewy"). Chui is 14 years old and moving pretty slowly these days. She's a fairly big dog; husky-sized, with lots of fur. Lee had tied her up on the back deck when he arrived and she seemed fairly content to lie there in the shade.
Mary, Lee and I were having snacks and beverages on the other side of the slider door that is the main egress to the deck where we could easy observe the mellow pooch. We got to thinking it might be an okay idea to introduce Chui to our cats, Elvis and Luna. They are strictly indoor felines and we surmised that they would scramble to another corner of the house and maybe gradually come back to investigate on their own time. So Lee went out, unhooked the leash and brought Chui in to say "hi".
Our generally more skiddish female cat, Luna did the expected thing and high-tailed it for another room. However Elvis, our male cat, who is much more curious and always present to meet visitors, surprised us. He immediately reacted in jungle cat fashion and produced a guttural growl and began slinking menacingly directly toward Chui. The growl turned into a hiss and the hiss turned into fisticuffs the moment he was in proximity. He flat-out started punching the bewildered dog. "My turf" was the clear message.
Chui was banished back to the deck and Elvis let Lee know that he had no hard feelings by rubbing up against him and jumping into his lap.
So those are my two recent unusual animal stories.
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Lee's visit was very nice. We drove around the city, ate some good food, hooked up with a few old friends from the days when Lee was a Grand Rapidian; 16 years ago. It was the tail end of my week-long vacation from chemotherapy. On Monday morning, Lee came with me to the chemo lounge to keep me company for a couple hours before heading back home; the shorter Chicago route this time. It was a routine infusion with the very professional Nurse Linda. She scored me a different prescription to combat the Thrush, that has returned to my mouth after a 3-day hiatus from the last cure. Abby brought in some broccoli soup and fruit salad for "captive" lounge chair lunch and and kept me company until the end of the chemo shift.
Now I'm back to the familiar routine of making the best of feeling lousy. So far, it seems to be a little bit less lousy this time around.
Last week we had that one really rainy day. There was a giant cloud mass that was rotating counterclockwise with its center right on Grand Rapids for a change. Umbrellas were dug out from way in the back of closets. All the brown lawns were quite happy but havoc was wreaked on the roadways. A trip to the grocery store was re-routed because of giant flooded areas across broad stretches of major streets.
I went upstairs in the mid-afternoon to try and grab a nap, due to another early, early wake-up time. (I had spent a couple hours lounging on the 3-season porch starting about 4:00 am. The sounds of the rain had been lovely atmosphere for reading. ) So I settled into my bed, which is up on the second floor of our house. Out of the corner of my eye I saw some movement on the tiny, brick-width ledge outside the window. It was a grey squirrel, lounging and grooming for a nap out of the rain. He was facing out into the weather with his back against the window. (I was close enough to ascertain it was a "he".) I watched him up close for a while and got to thinking it would be interesting to see how he would behave, going from a relaxed state to suddenly realizing he was in close proximity to a top-of-the-food-chain predator.
I placed my face inches away from the glass and showed some teeth. He was completely oblivious, facing the other direction. He was going to sleep, which is what I really needed to do. My jaw muscles were starting to feel some fatigue so I finally resorted to a little tap on the window. The squirrel turned to look. There was sort of a surprised double take... for both of us. And then he did something I did not expect. He began to furiously paw at the window right at my face. I'm pretty sure he wanted me to just go away. I eventually got the message and slunk back to bed. He curled back up and went to sleep. I eventually did the same.
Story number two: My friend Lee came over to hang out for a couple of days this past weekend. He had driven over from his new loft apartment in downtown Milwaukee via the scenic U.P. route, along with his dog, Chui (pronounced "chewy"). Chui is 14 years old and moving pretty slowly these days. She's a fairly big dog; husky-sized, with lots of fur. Lee had tied her up on the back deck when he arrived and she seemed fairly content to lie there in the shade.
Mary, Lee and I were having snacks and beverages on the other side of the slider door that is the main egress to the deck where we could easy observe the mellow pooch. We got to thinking it might be an okay idea to introduce Chui to our cats, Elvis and Luna. They are strictly indoor felines and we surmised that they would scramble to another corner of the house and maybe gradually come back to investigate on their own time. So Lee went out, unhooked the leash and brought Chui in to say "hi".
Our generally more skiddish female cat, Luna did the expected thing and high-tailed it for another room. However Elvis, our male cat, who is much more curious and always present to meet visitors, surprised us. He immediately reacted in jungle cat fashion and produced a guttural growl and began slinking menacingly directly toward Chui. The growl turned into a hiss and the hiss turned into fisticuffs the moment he was in proximity. He flat-out started punching the bewildered dog. "My turf" was the clear message.
Chui was banished back to the deck and Elvis let Lee know that he had no hard feelings by rubbing up against him and jumping into his lap.
So those are my two recent unusual animal stories.
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Now I'm back to the familiar routine of making the best of feeling lousy. So far, it seems to be a little bit less lousy this time around.
Tuesday, August 7, 2012
A fine mess
At 3:00a.m. this morning I was having a dream. I had a monumental cleaning task in front of me. There was a RV/Camping Bus that needed a pretty serious straightening up before it could be used for camping. For some reason, I had heroically taken on the task of cleaning the kitchen, which was piled high with dirty dishes, pizza boxes and clutter. I had pulled out all of the waste items and stacked them on top of the bus so they could be dumped in the garbage. I looked down and saw my younger brother, Rob, standing below looking very idle. In the dream he looked to be about 15 years old. I asked him if he would throw away this pile of garbage for me. He ignored the request and started walking away. I started to shout after him but he just sped up. I felt myself getting very angry and decide to jump off the top of the bus and chase him down.
CRASH!
It is 3:05a.m. and I am awake on the floor of my bedroom, on my hands and knees amongst the wreckage of my overturned bedside table and food pump apparatus. Evidently, my dream jump manifested itself with a real jump off the side of the bed. In the dark I realize by smell and feel that my bedside portable urinal has overturned on the hardwood floor. (Since I tube-feed and hydrate all night, I have to urinate fairly often and will use the portable urinal rather than drag all my pump stuff to the bathroom.) I'm tangled in tubes and electric wires and scrambling to find and right the overturned urinal in the dark.
Mary is awake too, probably freaking out from the crash. She's telling me to stay put and I'm telling her to turn on a light. So we commenced detangling and sizing up a real mess that definitely could not wait until morning to be remedied. I cleaned up myself in the bathroom (along with my electronics, which had been charging on the bedside table) and then went down to get a bucket of water with Murphy's Oil Soap and a sponge. Mary was on the macro clean-up detail with towels and had already unplugged the spaghetti of extension cords and isolated all the pee-covered fallen objects from those in the all-clear zone.
By 3:28a.m. I plugged in the electric clock and reset the time. We had pretty much restored order but found ourselves wide awake. Mary decided right there that she would be taking a personal day from work. I'm sure when we look back it will be a funny story.
I'm a bit puzzled by why it was my brother, Rob, in the dream. I am typically the grasshopper to his ant. He is a farmer and the hardest working person I know so it doesn't make sense that I cast him in the "lazy" role in my dream. Hmmm....
On a completely new and unrelated subject, I have been disturbed by the recent mass shootings. The most recent one at the Sikh Temple was slightly more disturbing to me as it seems to have been motivated by hate (as opposed to the Colorado shooting that seemed to be motivated by crazy). There is so much anger and distrust and misunderstanding out there! What are the forces driving these behaviors to be actualized? And then a local example surfaced that has me simply stunned. Can't get it out of my head.
The East Hills Neighborhood put on an event called "Gay Day" to celebrate diversity. It was a block party with fun and food and community. Naturally protesters showed up. Someone videotaped an exchange with a couple of the protestors. This exchange was a religious argument that I had never heard before and has left me absolutely flabbergasted. The man used the Bible to justify rape. It is a pretty disturbing clip. (The clip has been pulled from the Internet but the content is summarized at the link). I put it here in my blog because of the fact that I can't stop thinking about people who are out there in this world with such a skewed understanding of living with their fellow human beings. Sorry to end with a downer.
CRASH!
It is 3:05a.m. and I am awake on the floor of my bedroom, on my hands and knees amongst the wreckage of my overturned bedside table and food pump apparatus. Evidently, my dream jump manifested itself with a real jump off the side of the bed. In the dark I realize by smell and feel that my bedside portable urinal has overturned on the hardwood floor. (Since I tube-feed and hydrate all night, I have to urinate fairly often and will use the portable urinal rather than drag all my pump stuff to the bathroom.) I'm tangled in tubes and electric wires and scrambling to find and right the overturned urinal in the dark.
Mary is awake too, probably freaking out from the crash. She's telling me to stay put and I'm telling her to turn on a light. So we commenced detangling and sizing up a real mess that definitely could not wait until morning to be remedied. I cleaned up myself in the bathroom (along with my electronics, which had been charging on the bedside table) and then went down to get a bucket of water with Murphy's Oil Soap and a sponge. Mary was on the macro clean-up detail with towels and had already unplugged the spaghetti of extension cords and isolated all the pee-covered fallen objects from those in the all-clear zone.
By 3:28a.m. I plugged in the electric clock and reset the time. We had pretty much restored order but found ourselves wide awake. Mary decided right there that she would be taking a personal day from work. I'm sure when we look back it will be a funny story.
I'm a bit puzzled by why it was my brother, Rob, in the dream. I am typically the grasshopper to his ant. He is a farmer and the hardest working person I know so it doesn't make sense that I cast him in the "lazy" role in my dream. Hmmm....
On a completely new and unrelated subject, I have been disturbed by the recent mass shootings. The most recent one at the Sikh Temple was slightly more disturbing to me as it seems to have been motivated by hate (as opposed to the Colorado shooting that seemed to be motivated by crazy). There is so much anger and distrust and misunderstanding out there! What are the forces driving these behaviors to be actualized? And then a local example surfaced that has me simply stunned. Can't get it out of my head.
The East Hills Neighborhood put on an event called "Gay Day" to celebrate diversity. It was a block party with fun and food and community. Naturally protesters showed up. Someone videotaped an exchange with a couple of the protestors. This exchange was a religious argument that I had never heard before and has left me absolutely flabbergasted. The man used the Bible to justify rape. It is a pretty disturbing clip. (The clip has been pulled from the Internet but the content is summarized at the link). I put it here in my blog because of the fact that I can't stop thinking about people who are out there in this world with such a skewed understanding of living with their fellow human beings. Sorry to end with a downer.
Sunday, August 5, 2012
A summer outing
I successfully managed an evening outing to the Lake Michigan shoreline last evening. My friend Jon invited a bunch of his friends, many of them musicians, to his summer cottage on a bluff, and specifically included a college-era group of compadres who came from far and wide. It was a reunion of sorts for many of us.I had some anxiety about going in the first place. I could easily talk myself out of going. Where do I start?
- Hey, I'm in the middle of chemo!
- I'm always tired at night.
- I'm nearly an hour from being home if I suddenly feel like hell.
- The party is going to have a lot of great looking food and I can't eat very much of it.
- I'm completely bald and 40 pounds lighter- do I telegraph the aura of a cancer victim to those who may not know?
- Mary would probably have a lot more fun going alone and not worrying about me and having to leave early.
- Does my mere presence put a chill on things for some people? After all, who wants to be reminded of mortality at a party?
In my opinion it was perfect climate conditions; overcast (a bald man's friend) and warm with a nice breeze and a invigorating potential for severe weather. Planting a bag chair at the top of the bluff, I surveyed the scene for at least an hour, absorbing a vibe that I found most pleasant. I watched people arrive with instruments and food items, many of them with familiar faces and stances that had me flashing back nearly 30 years. A small crowd also gathered at the beach. I observed that the water was obviously, abnormally warm by the way congregants entered the waves without hesitation and how quickly they wandered to waist depth.
A pair of huge, shaggy dogs barreled down the steps to join the humans. The looked a bit like Newfoundlands, except perhaps a bit smaller and with a striking black/brown/white color palette. (I grabbed a video of one of them as she later came back up the steps). It gave me kind of a thrill to watch them bound through the sand without a care and indiscriminately introduce themselves to everyone on the beach. They appeared so happy! Even small children and little dogs welcomed the visits. Later I asked about the breed and was told more than once... I thought it was Austrian-something-or-other-dog... but I could not remember and could not find a picture on a dog breed website.
I eventually joined the party, starting in the kitchen- my comfort zone. There was a huge fruit bowl, which was full of my easy-to-eat favorites. I re-introduced myself to those familiar, if slightly older, faces. College memories of these characters came pouring back. I got some great hugs from some of the more special lost friends. It was all extremely nice.
The evening climaxed for me with the weather front that we watched coming across the lake straight at us. The clouds were rippled like dreadlocks and I could see the wind patterns darkening the water below. It was all moving in 3D straight toward us. There appeared to be no lightning so it felt safe to perch on the bluff and wait for impact. When the wind hit it was exhilarating; warm strong gusts with no rain. I let it whip through my untucked shirt and breathe vigor into my whole body. It was a real high! A few chairs may have flipped over and maybe a few plates of food but overall it did not dampen the party in the slightest.
A text message came in from Marlee about the same time that I felt like it was about time to go. She was returning earlier than we expected from her overnight outing to her girlfriends's place up in Charlevoix. If we left right away, we might just be able to get home before she did. Mary and I said some quick goodbyes and felt our way back to the car. Despite having a strategic getaway parking spot, we discovered there were a LOT of cars that came after us. My final, manly triumph came as I abandoned a multi-point turn-around attempt and backed the car all the way down a long, auto-lined, single lane driveway with deep valley's on either side in the dark. Marlee beat us home by about 15 minutes as we strolled in at 11:00pm, but all was well.
Friday, August 3, 2012
Slippery slope
The responsibility of keeping up with fresh postings can be a bit challenging when one day feels like the next. Or you'd rather not burden readers with details of discomfort and boredom. After all this blog is my therapy first and I want to make myself feel good by writing in it. Interesting things do happen every day and as long as I am not beaten down by some oppressive symptom of chemotherapy, it is not hard to render them into a story. But I am being beaten down currently by an annoying 2nd bout with oral thrush. It's adding insult to injury.
So on top of having nausea and no appetite, any food or drink I do put in my mouth feels like it absolutely does not belong there. Add a constant sour taste, a heavy film on your teeth, a bit of a sore throat and you get the idea. It is challenging to morale. And the stupid part is that it took me days of suffering before I recognized it. I chalked all the discomfort up to "chemo" without actually entertaining the idea that individual symptoms were treatable. When I finally took the time to look at my tongue and remember that this was something I had seen before, I had already endured days of it; days that could have been spent treating it.
Now I'm on the meds (swish and swallow 5 times per day) and although it is still pretty bad, I'm noting improvements. The yogurt smoothie I had for breakfast tasted pretty good.
This experience goes to show the slippery slope of letting yourself feel bad. Bad slides to rotton. It is worth the effort to continuously pull yourself back up and remind yourself that so many others have it so much worse than you do.
This morning I am looking forward to a visit from Aaron. He lives in Brooklyn and we have made the habit of getting together once in a while to catch up for several years since he left Grand Rapids, and spent time living in France and New York. I've known Aaron since he was a young volunteer at GRTV in the early 90's. He eventually became an intern, and then an employee and ultimately a colleague and friend. He'll bring tales from afar. I feel currently feel energized and not sick at all! That slippery slope flows uphill as well.
So on top of having nausea and no appetite, any food or drink I do put in my mouth feels like it absolutely does not belong there. Add a constant sour taste, a heavy film on your teeth, a bit of a sore throat and you get the idea. It is challenging to morale. And the stupid part is that it took me days of suffering before I recognized it. I chalked all the discomfort up to "chemo" without actually entertaining the idea that individual symptoms were treatable. When I finally took the time to look at my tongue and remember that this was something I had seen before, I had already endured days of it; days that could have been spent treating it.
Now I'm on the meds (swish and swallow 5 times per day) and although it is still pretty bad, I'm noting improvements. The yogurt smoothie I had for breakfast tasted pretty good.
This experience goes to show the slippery slope of letting yourself feel bad. Bad slides to rotton. It is worth the effort to continuously pull yourself back up and remind yourself that so many others have it so much worse than you do.
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| We figured it was 1991, fresh out of Blandford School 6th grade when Aaron came to GRTV to volunteer |
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