Susan Boyle from Britain's Got Talent
I LOVE an underdog...just watch and tell me what you feel when you are done.
HOME OF THE CANCER CHRONICLES
Wednesday, April 15, 2009
INSPIRATIONAL!
Friday, April 10, 2009
Tuesday, April 7, 2009
The Cancer Chronicles 35
NOVEMBER 2008 - Revisited
After a LONG recuperation period, it was time to prepare for my next check up at MD Anderson. So far I my diet consists of 30% real food. I'm tired of soups, puddings, and protein laced milkshakes. I have managed to begin eating pasta, tuna fish with gobs of mayo, and some chicken diced up, but not without great pain. It's like my tongue is exhausted from all the movement and afterwards begins to throb.
I'm learning that I can get some real food down with modifications. Ground beef is a nightmare. It breaks down into little pieces and ends up stuck behind my teeth where my tongue can't get at it to move it. But, if I add mashed potatoes I can manage the beef better. I'm trying so hard not to get used to using my fingers to manipulate my food. I can move food by sloshing it around with water, or sucking motions, mixing foods that compliment my need, or with the use of a fork to place it.
Often when I chew, the food wants to come to the front of my mouth. If I'm not careful, it will just fall out. I'm learning that if I apply pressure to my lower lip this won't happen. It seems to only happen with bulkier foods. I believe this is due to the doctors cutting my mouth open on either side for easier access. My lower lip has never fully recovered. It's larger than it was and doesn't feel as strong.
Even though the tongue has been rebuilt, it is shorter and less mobile. I'm not sure if all tongue cancer patients have this problem. I also had the left side floor of my mouth redone too since the cancer infiltrated it. I'm really amazed at how much that damn tongue used to do without me ever realizing it!
Throughout October and November I experimented with many foods. I was surprised to find I could eat salad easier if I shredded the lettuce instead of dicing it. Tomatoes, onions, olives, topped with crab meat made it worth eating. If I removed the skin from the cucumber and diced it up, I could also manage that. Of course adding 1000 calories of ranch dressing also made it even easier. Some pastas, the wider variety, seem easy to eat since they are slippery and I can move them around with a sucking motion. With the addition of a sauce like Alfredo, it becomes even easier. With one exception...spaghetti noodles
Because the salivary glands took a hit during radiation, breads are a big problem for me. They act like a sponge, sucking up all the moisture and leaving me with paste. Some very soft breads like Wonder Bread are easier if I use mayo or a dressing. Olive oil with pesto is VERY helpful, but some foods seem like they are just too much trouble, leaving my mouth exhausted as if my tongue just ran a marathon!
Oddly enough, grilled cheese isn't too difficult as long as it is made with Wonder Bread and LOTS of butter and I mean almost 1/2 a stick. At this point I'm not worried about calories, but clogged arteries could be a issue soon!
I am preparing to see my doctors again in a few weeks to address some scar tissue (scar band) and have my 6 month check up to see if the cancer has returned. The scar band is holding my tongue in place and restricting its movement. It acts like a rubber band. I want the doctor to look and see if it can be cut or modified for greater movement.
Thanksgiving was quiet and I was able to eat some turkey with LOTS of gravy and mashed potatoes. I hear my heart pounding now! It's so worth being able to eat some real foods again, even if they have to be modified for consumption.
By the end of November I was only relying on my feeding tube for 50% of my nutrition. I want off that tube so bad!!!! I just want to sit down and feel like I can have a real meal again and enjoy it rather than it requiring so much work and concentration. I have to be so careful when eating that I don't hold much of a conversation. I can aspirate my food and get it caught in my wind pipe very easily. Choking to death is not an option!!!!
As much as I'm so excited about beginning to eat real food again, it is so tiring and time consuming. I end up with great jaw and tongue pain. My portions are 1/3 what they should be and it takes me 40 minutes to complete a meal. Because I require so much liquid to wash down my food, I'm sure the 20 to 30 ounces of water has something to do with me filling up so fast.
Someday I want to go out and eat in public again without being embarrassed. For now, the battle continues as I prepare to see my doctors next week.
Peace
B
After a LONG recuperation period, it was time to prepare for my next check up at MD Anderson. So far I my diet consists of 30% real food. I'm tired of soups, puddings, and protein laced milkshakes. I have managed to begin eating pasta, tuna fish with gobs of mayo, and some chicken diced up, but not without great pain. It's like my tongue is exhausted from all the movement and afterwards begins to throb.
I'm learning that I can get some real food down with modifications. Ground beef is a nightmare. It breaks down into little pieces and ends up stuck behind my teeth where my tongue can't get at it to move it. But, if I add mashed potatoes I can manage the beef better. I'm trying so hard not to get used to using my fingers to manipulate my food. I can move food by sloshing it around with water, or sucking motions, mixing foods that compliment my need, or with the use of a fork to place it.
Often when I chew, the food wants to come to the front of my mouth. If I'm not careful, it will just fall out. I'm learning that if I apply pressure to my lower lip this won't happen. It seems to only happen with bulkier foods. I believe this is due to the doctors cutting my mouth open on either side for easier access. My lower lip has never fully recovered. It's larger than it was and doesn't feel as strong.
Even though the tongue has been rebuilt, it is shorter and less mobile. I'm not sure if all tongue cancer patients have this problem. I also had the left side floor of my mouth redone too since the cancer infiltrated it. I'm really amazed at how much that damn tongue used to do without me ever realizing it!
Throughout October and November I experimented with many foods. I was surprised to find I could eat salad easier if I shredded the lettuce instead of dicing it. Tomatoes, onions, olives, topped with crab meat made it worth eating. If I removed the skin from the cucumber and diced it up, I could also manage that. Of course adding 1000 calories of ranch dressing also made it even easier. Some pastas, the wider variety, seem easy to eat since they are slippery and I can move them around with a sucking motion. With the addition of a sauce like Alfredo, it becomes even easier. With one exception...spaghetti noodles
Because the salivary glands took a hit during radiation, breads are a big problem for me. They act like a sponge, sucking up all the moisture and leaving me with paste. Some very soft breads like Wonder Bread are easier if I use mayo or a dressing. Olive oil with pesto is VERY helpful, but some foods seem like they are just too much trouble, leaving my mouth exhausted as if my tongue just ran a marathon!
Oddly enough, grilled cheese isn't too difficult as long as it is made with Wonder Bread and LOTS of butter and I mean almost 1/2 a stick. At this point I'm not worried about calories, but clogged arteries could be a issue soon!
I am preparing to see my doctors again in a few weeks to address some scar tissue (scar band) and have my 6 month check up to see if the cancer has returned. The scar band is holding my tongue in place and restricting its movement. It acts like a rubber band. I want the doctor to look and see if it can be cut or modified for greater movement.
Thanksgiving was quiet and I was able to eat some turkey with LOTS of gravy and mashed potatoes. I hear my heart pounding now! It's so worth being able to eat some real foods again, even if they have to be modified for consumption.
By the end of November I was only relying on my feeding tube for 50% of my nutrition. I want off that tube so bad!!!! I just want to sit down and feel like I can have a real meal again and enjoy it rather than it requiring so much work and concentration. I have to be so careful when eating that I don't hold much of a conversation. I can aspirate my food and get it caught in my wind pipe very easily. Choking to death is not an option!!!!
As much as I'm so excited about beginning to eat real food again, it is so tiring and time consuming. I end up with great jaw and tongue pain. My portions are 1/3 what they should be and it takes me 40 minutes to complete a meal. Because I require so much liquid to wash down my food, I'm sure the 20 to 30 ounces of water has something to do with me filling up so fast.
Someday I want to go out and eat in public again without being embarrassed. For now, the battle continues as I prepare to see my doctors next week.
Peace
B
Saturday, March 28, 2009
Friday, March 20, 2009
The Cancer Chronicles 34
WHAT I DID LAST SUMMER
part 3
After my long walk with nature, I grew so tired. I needed to return to the cottage for a nap. I think the walking had weakened my body, but the solitude of such a wondrous day filled my soul.
I napped on the couch for a bit when I felt a breeze kick up through the open screened door. A gentle rain shower began. Once again, like a calling card in my life, a rainbow appeared hovering over Lake Huron, I was to pay attention to. It rained briefly over the gloomy grey sky. The glorious sunshine of the day was gone and a new attitude was in the air.
Rainbow over Lake Huron seen from the cottage balcony, Harrisville, MI
Craig and Aaron returned and mentioned that they were going back to the camp ground to meet some fellow barbershoppers. So, that evening, as tired as I was, I prepared to make the gathering. Gloria would stay at the cottage to rest.
We set off to buy some wood for a campfire and drove to the park. The camp ground seemed completely full, even though all the events were a week away. We found Craig's friends, Pete and Sally Burns, in their 40 foot luxury motor home backed up to a wooded area. Down a short path, beyond the woods, you'd found yourself on the sandy beach of Lake Huron. It was one of the best locations in the park with its own fire pit. Now this is how camping should be! All the luxuries of home with all the benefits of nature.
After the introductions we sparked up the fire pit and began to talk. It wasn't long before food was being discussed. Hot dogs were on the menu. DAMN! I wanted one so bad! When I bowed out of the dog tally, I had to explain the reason why. As it turned out Sally was a breast cancer survivor, so we instantly bonded. Cancer is like a club and sometimes only other cancer survivors can fully understand. As more than one conversation dominated the fire pit, Sally and I exchanged war stories. She told me about "the girls" (her breasts) how they were re-built, and I told of my battled tongue and how they fashioned a new one out of my forearm.
She asked to see my tongue and I said, "Only if I can see the girls." In a serious tone I heard her husband say, "Go ahead honey, show him." I froze for a moment before I realized he was joking. I quickly changed the subject to singing. Both Sally and Pete are in quartets. Some people might think singing barbershop tags is only for men, but Sally is a member of the Sweet Adelines International Singers , a group for woman.
They broke out the dogs and I just wanted to devourer one. Aaron was a bit hesitant about having a hot dog cooked over an open fire. He had never had a weenie roast. The thought of skewering a hot dog and roasting it yourself over an open fire did not sound appetizing to him. After much prodding, he agreed to try one. I don't think he wanted to step out of his comfort zone. The flames danced before me as I watched those dogs smolder and char.
I was mesmerized by the flames and sadden by the fact that I could not partake in the ritual. I kept thinking, "I want one, just one bite with ketchup, mustard, and fresh diced onions!" But, I knew it would be too difficult to try in front of strangers. I'd probably embarrass myself or gross them out if I had to use my fingers to maneuver the food. So, when one of the first dogs out of the flames was offered to me, I gracefully declined with a tear. I'm sure that was the smoke from the fire that caused that...right??
I lived vicariously through Aaron that night. As he reluctantly took a bite into his first campfire dog, his face went from, "I'm not too sure about this," to "WOW! This is AWESOME!" He wolfed that dog down and fired up a second without hesitation. I think part of me was jealous. He didn't realize what a gift that was, but the enjoyment plastered on his face was worth watching. I hoped I would soon enjoy my first post cancer hot dog as he did that night. I only wish we could have shared the experience together.
The night air was fresh and crisp after the brief afternoon rain. Tiny drops of water sat silently on tree leaves that surrounded us. The campground grew dark and quiet, with bright stars dancing overhead. Only the flicker of flames and a light from the motor home lit up our surroundings.
As the evening went on, another group of friends walked by. The daughter of this couple, Diane was a Girl Scout. Not just any Girl Scout, but a Gold Award Winning Girl Scout, the highest honor given. So, when she offered to make everyone s'mores, I about packed it in! DAMMIT! I can't eat the hot dogs and now s'mores!!! Made by one of the highest ranking Girl Scouts on the planet!!! OK, I had my day at the beach and my rainbow. I guess I can't have my cake and eat it too.
I watched Diane exactingly build each s'more after carefully roasting her marshmallows to perfection. She stacked a honey graham cracker, a big square chunk of chocolate Hersey bar, the gooey, melting marshmallow, all topped off with another graham cracker, then squished to perfection! The aroma was heavenly as the chocolate square melted gently under the warmth of the roasted sweet white fluff. Everyone but me enjoyed Diane's spectacular treat. I now know how a dog feels when he begs at the table for food and doesn't get any!
Happy and full, the group began singing tags in four part A Capella harmony. Craig asked if I wanted to sing along and they would teach me a tag. But, just like the dogs and the s'mores, that was out of the question for me this evening. Craig and I were once in Choir together, rivals for first chair of the second tenor section, so he knew I could belt out a tune. But after being sliced, diced, micro-waved, and poisoned, my vocal prowess was not what it once was. I was beginning to realize how hard it will be to be in a social environment having had tongue cancer. I was not able to enjoy a simple evening the same way as the others. A part of me is lost, and I don't just mean my tongue.
Was this the way it would be for the rest of my life? With that thought, the harmony was interrupted by security, asking us to keep it down. The loud talking, laughing, and singing was disturbing the other campers. What??? Are we the only ones that know how to have a good time??? Old Farts!
As entertaining as it was, I felt a bit depressed. Just another revelation; an understanding that there are such major highs and lows when you have cancer. How can a tongue affect so much of one's life? Even when everything seems perfect to the outside world, life as I know it has changed. After all, how could anyone NOT have a good time on an evening like this, right??? If you could only get inside my head you'd understand. I did enjoy myself very much, but I knew it could be so much better if I was able to eat, speak clearer, and sing along with the gang. I kept my game face on and enjoyed the evening the best I could, but sadness loomed inside my head.
The singing ceased and the talking softened with only spikes of laughter. The embers before us glowed softly as the night was coming to an end. It was getting late and after security had to issue us a second warning, the evening lost it's momentum. We said our good-byes and I gave my new cancer buddy a deep hug. Sally was living well after having both breasts removed and that was the lesson I would take with me. Cancer did not stop her from living and it won't stop me!
We drove back to the cottage to sleep and sleep hard I did. When morning ...ah afternoon came, I called my Aunt and Uncle to see if they would be up for company. Yep, I'm in town and I'll be there in a hour!
I gave Gloria a deep hug and jumped in the car for the short drive. Gloria is another cancer warrior. She just keeps going with such a great attitude. I really respect the way she lives with her cancer! More positive reinforcement that you just gotta keep livin!
When I reached East Tawas, it was beautiful. My aunt and uncle live near the Marina across the street from the lake. I had planned on only staying a few hours, but with my late start it seemed best to spend the night so we would have more time to catch up. My Aunt and Uncle also both had cancer. It seemed to be a theme for this trip.
I called my mom to check on her. She was doing well and sounded great. I asked if she needed me because I wanted to spend the night in East Tawas. Mom said she was fine and that she'd see me tomorrow afternoon. After all, she had a team of nurses and caregivers in and out of the house daily.
I broke out my feed bag, which is always a bit of a shock for new people being exposed to a man hooked up to a IV pole with a bag of liquid for dinner. They so graciously acted as if this was normal and the conversation went on late into the night.
Morning came again quickly. I wasn't up 15 minutes when my cell phone rang. It was my mom's neighbor. They had taken her to the hospital. She had fallen sometime during the night, flipped over her potty chair around 3 AM and laid on the floor until 10 AM. When my cousins came by for a visit and couldn't get mom to answer the door, they knew something was wrong.
Well a hurried good-bye ensued and I hit the road, driving directly to the hospital, ridden with guilt. I should have driven home last night! When I found out she was fine, just bruised up a bit, I was relieved. Then when she told me she had gotten up to go to the bathroom with only the aid of a small nightlight. She apparently either tripped over her oxygen cord or misjudged the portable commode as she sat down. Mom found the whole thing funny, as she described the ordeal with the commode flying through the air and landing upside down as she fell flat on the floor and laid there for seven hours or more. Again, I blame all the pain meds and her lack of judgement by not turning on a light! I wasn't amused.
She wasn't hurt badly, but the doctors suggested more rehab as they thought it would help her gain more strength in her legs. They also wanted to work on some physical therapy for the arm she fractured months ago that put her in the hospital the last time.
So much for coming to help mom, she would be in rehab for several months so, I planned my trip home and registered the event under...F&*#! I still think all those pain meds played a key factor. I know she needs some, but not all that she was taking. I'm not a doctor, but I know when someone is stoned!
This whole trip had taken every ounce of my energy. Mom was only home five days before she ended back in the hospital. I think they released her from rehab way too soon! On the long plane ride home I tried to sleep. Too much on my mind. So many people living with illness, but all warriors to me. I had pushed myself past my limit. Upon returning home, I stayed in bed for three weeks trying to regain my energy. I couldn't lift my head off the pillow. Now you know why it took so long to finish this post.
Life isn't always a pic-a-nic basket, eh Boo Boo?
Peace
B
part 3
After my long walk with nature, I grew so tired. I needed to return to the cottage for a nap. I think the walking had weakened my body, but the solitude of such a wondrous day filled my soul.
I napped on the couch for a bit when I felt a breeze kick up through the open screened door. A gentle rain shower began. Once again, like a calling card in my life, a rainbow appeared hovering over Lake Huron, I was to pay attention to. It rained briefly over the gloomy grey sky. The glorious sunshine of the day was gone and a new attitude was in the air.
Rainbow over Lake Huron seen from the cottage balcony, Harrisville, MICraig and Aaron returned and mentioned that they were going back to the camp ground to meet some fellow barbershoppers. So, that evening, as tired as I was, I prepared to make the gathering. Gloria would stay at the cottage to rest.
We set off to buy some wood for a campfire and drove to the park. The camp ground seemed completely full, even though all the events were a week away. We found Craig's friends, Pete and Sally Burns, in their 40 foot luxury motor home backed up to a wooded area. Down a short path, beyond the woods, you'd found yourself on the sandy beach of Lake Huron. It was one of the best locations in the park with its own fire pit. Now this is how camping should be! All the luxuries of home with all the benefits of nature.
After the introductions we sparked up the fire pit and began to talk. It wasn't long before food was being discussed. Hot dogs were on the menu. DAMN! I wanted one so bad! When I bowed out of the dog tally, I had to explain the reason why. As it turned out Sally was a breast cancer survivor, so we instantly bonded. Cancer is like a club and sometimes only other cancer survivors can fully understand. As more than one conversation dominated the fire pit, Sally and I exchanged war stories. She told me about "the girls" (her breasts) how they were re-built, and I told of my battled tongue and how they fashioned a new one out of my forearm.
She asked to see my tongue and I said, "Only if I can see the girls." In a serious tone I heard her husband say, "Go ahead honey, show him." I froze for a moment before I realized he was joking. I quickly changed the subject to singing. Both Sally and Pete are in quartets. Some people might think singing barbershop tags is only for men, but Sally is a member of the Sweet Adelines International Singers , a group for woman.
They broke out the dogs and I just wanted to devourer one. Aaron was a bit hesitant about having a hot dog cooked over an open fire. He had never had a weenie roast. The thought of skewering a hot dog and roasting it yourself over an open fire did not sound appetizing to him. After much prodding, he agreed to try one. I don't think he wanted to step out of his comfort zone. The flames danced before me as I watched those dogs smolder and char.
I was mesmerized by the flames and sadden by the fact that I could not partake in the ritual. I kept thinking, "I want one, just one bite with ketchup, mustard, and fresh diced onions!" But, I knew it would be too difficult to try in front of strangers. I'd probably embarrass myself or gross them out if I had to use my fingers to maneuver the food. So, when one of the first dogs out of the flames was offered to me, I gracefully declined with a tear. I'm sure that was the smoke from the fire that caused that...right??
I lived vicariously through Aaron that night. As he reluctantly took a bite into his first campfire dog, his face went from, "I'm not too sure about this," to "WOW! This is AWESOME!" He wolfed that dog down and fired up a second without hesitation. I think part of me was jealous. He didn't realize what a gift that was, but the enjoyment plastered on his face was worth watching. I hoped I would soon enjoy my first post cancer hot dog as he did that night. I only wish we could have shared the experience together.
The night air was fresh and crisp after the brief afternoon rain. Tiny drops of water sat silently on tree leaves that surrounded us. The campground grew dark and quiet, with bright stars dancing overhead. Only the flicker of flames and a light from the motor home lit up our surroundings.
As the evening went on, another group of friends walked by. The daughter of this couple, Diane was a Girl Scout. Not just any Girl Scout, but a Gold Award Winning Girl Scout, the highest honor given. So, when she offered to make everyone s'mores, I about packed it in! DAMMIT! I can't eat the hot dogs and now s'mores!!! Made by one of the highest ranking Girl Scouts on the planet!!! OK, I had my day at the beach and my rainbow. I guess I can't have my cake and eat it too.
I watched Diane exactingly build each s'more after carefully roasting her marshmallows to perfection. She stacked a honey graham cracker, a big square chunk of chocolate Hersey bar, the gooey, melting marshmallow, all topped off with another graham cracker, then squished to perfection! The aroma was heavenly as the chocolate square melted gently under the warmth of the roasted sweet white fluff. Everyone but me enjoyed Diane's spectacular treat. I now know how a dog feels when he begs at the table for food and doesn't get any!
Happy and full, the group began singing tags in four part A Capella harmony. Craig asked if I wanted to sing along and they would teach me a tag. But, just like the dogs and the s'mores, that was out of the question for me this evening. Craig and I were once in Choir together, rivals for first chair of the second tenor section, so he knew I could belt out a tune. But after being sliced, diced, micro-waved, and poisoned, my vocal prowess was not what it once was. I was beginning to realize how hard it will be to be in a social environment having had tongue cancer. I was not able to enjoy a simple evening the same way as the others. A part of me is lost, and I don't just mean my tongue.
Was this the way it would be for the rest of my life? With that thought, the harmony was interrupted by security, asking us to keep it down. The loud talking, laughing, and singing was disturbing the other campers. What??? Are we the only ones that know how to have a good time??? Old Farts!
As entertaining as it was, I felt a bit depressed. Just another revelation; an understanding that there are such major highs and lows when you have cancer. How can a tongue affect so much of one's life? Even when everything seems perfect to the outside world, life as I know it has changed. After all, how could anyone NOT have a good time on an evening like this, right??? If you could only get inside my head you'd understand. I did enjoy myself very much, but I knew it could be so much better if I was able to eat, speak clearer, and sing along with the gang. I kept my game face on and enjoyed the evening the best I could, but sadness loomed inside my head.
The singing ceased and the talking softened with only spikes of laughter. The embers before us glowed softly as the night was coming to an end. It was getting late and after security had to issue us a second warning, the evening lost it's momentum. We said our good-byes and I gave my new cancer buddy a deep hug. Sally was living well after having both breasts removed and that was the lesson I would take with me. Cancer did not stop her from living and it won't stop me!
We drove back to the cottage to sleep and sleep hard I did. When morning ...ah afternoon came, I called my Aunt and Uncle to see if they would be up for company. Yep, I'm in town and I'll be there in a hour!
I gave Gloria a deep hug and jumped in the car for the short drive. Gloria is another cancer warrior. She just keeps going with such a great attitude. I really respect the way she lives with her cancer! More positive reinforcement that you just gotta keep livin!
When I reached East Tawas, it was beautiful. My aunt and uncle live near the Marina across the street from the lake. I had planned on only staying a few hours, but with my late start it seemed best to spend the night so we would have more time to catch up. My Aunt and Uncle also both had cancer. It seemed to be a theme for this trip.
I called my mom to check on her. She was doing well and sounded great. I asked if she needed me because I wanted to spend the night in East Tawas. Mom said she was fine and that she'd see me tomorrow afternoon. After all, she had a team of nurses and caregivers in and out of the house daily.
I broke out my feed bag, which is always a bit of a shock for new people being exposed to a man hooked up to a IV pole with a bag of liquid for dinner. They so graciously acted as if this was normal and the conversation went on late into the night.
Morning came again quickly. I wasn't up 15 minutes when my cell phone rang. It was my mom's neighbor. They had taken her to the hospital. She had fallen sometime during the night, flipped over her potty chair around 3 AM and laid on the floor until 10 AM. When my cousins came by for a visit and couldn't get mom to answer the door, they knew something was wrong.
Well a hurried good-bye ensued and I hit the road, driving directly to the hospital, ridden with guilt. I should have driven home last night! When I found out she was fine, just bruised up a bit, I was relieved. Then when she told me she had gotten up to go to the bathroom with only the aid of a small nightlight. She apparently either tripped over her oxygen cord or misjudged the portable commode as she sat down. Mom found the whole thing funny, as she described the ordeal with the commode flying through the air and landing upside down as she fell flat on the floor and laid there for seven hours or more. Again, I blame all the pain meds and her lack of judgement by not turning on a light! I wasn't amused.
She wasn't hurt badly, but the doctors suggested more rehab as they thought it would help her gain more strength in her legs. They also wanted to work on some physical therapy for the arm she fractured months ago that put her in the hospital the last time.
So much for coming to help mom, she would be in rehab for several months so, I planned my trip home and registered the event under...F&*#! I still think all those pain meds played a key factor. I know she needs some, but not all that she was taking. I'm not a doctor, but I know when someone is stoned!
This whole trip had taken every ounce of my energy. Mom was only home five days before she ended back in the hospital. I think they released her from rehab way too soon! On the long plane ride home I tried to sleep. Too much on my mind. So many people living with illness, but all warriors to me. I had pushed myself past my limit. Upon returning home, I stayed in bed for three weeks trying to regain my energy. I couldn't lift my head off the pillow. Now you know why it took so long to finish this post.
Life isn't always a pic-a-nic basket, eh Boo Boo? Peace
B
Tuesday, March 17, 2009
Friday, February 20, 2009
Thursday, February 19, 2009
The Cancer Chronicles 34
WHAT I DID LAST SUMMER
Part 2
Before I came to Michigan, I mentioned to Craig, if possible, I would love to spend a weekend at the family cottage in Harrisville to decompress and forget the world for a few days. It’s one of those small towns where everybody knows each other and you hope the rest of the world doesn’t find your hidden little gem.
Craig and the family were headed up for the holiday weekend. Craig’s father, Tom was a big Barbershopper and every Labor Day weekend the little town of Harrisville, Michigan (population 514) is taken over by thousands of people participating in a National Jamboree known as Harmony Weekend. There is a grand parade, craft shows, and Barbershop Quartets singing harmonious tags. The event is sponsored by the Society for the Preservation and Encouragement of Barber Shop Quartet Singing in America. I wasn’t sure if I could make it, but I thought it would be a great get away with family/friends.
My mother was stable, but sleeping a lot. She wasn’t eating much, but that’s always part of our struggle. My biggest concern was all the pain medicines she was taking. She LOVES her pain meds, but what they had her taking was criminal in my opinion! Her menu: a Fentanyl patch, 10mg Vicodin, Ultram, Dilaudid, plus Tylenol 4’s for desert! And her doctors wonder why she can’t walk or get out of bed! Can you say, “I’ve fallen and I can’t get up…I can't feel anything…nor do I care!” HOLY SHIT BATMAN! She couldn’t complain if she wanted to!
I had so many people I wanted to see, but very little time to do so. As my week progressed, I found myself at another dinner table. Longtime friends Michael and Deborah invited me for dinner. Deb and I grew up together. She has always been like a sister to me. When I moved to California, Mike and Deb soon followed. Mike’s job relocated him to San Jose. Long story short, Deborah went to work for me as my PA/Office Manager. For over 5 years she helped me manage and grow my business. Without her, my business success would have been minimized. Out of 3 children, their youngest son, Nathaniel was still at home and joined us for the feast.
I was so excited to see them. We talk on the phone often, but nothing beats hugs from true friends. Deb made me some homemade soup, but when I saw she had cooked some pork in a pressure cooker, I just had to try some!
The flavor was awesome, it was tender, but alas the meat was dryer than the venison and more difficult to chew. I began to wonder if I would have trouble with some foods more than others. Maybe it wasn’t going to be as simple as I thought. I know that my salivary glands are not producing a normal amount, which could be a big part of the problem. I finished my homemade cream of broccoli soup and enjoyed the conversation late into the evening. Relearning to prepare foods differently and eat all over again is going to be a dreadful task.
As the weekend drew nearer, I called Craig to see if his family was still headed up North. Indeed they were. Craig was taking his mother, Gloria up to the cottage the weekend before Labor Day. Aaron was also going, but Jill and Wayne would not arrive until next Labor Day Weekend, so I would miss them.
With Gloria now going, I wanted to go all the more. Gloria is in the midst of her own battle with breast cancer (again) and I wanted to see her and give her a big hug! I hadn’t seen her in years, so this was a must. As sad as it sounds, I thought... given that we both have cancer, it might be the last opportunity we'd have together. The last time we vacationed together, I was in college and Gloria, Tom, Craig, and I traveled to Los Angles and Vegas. (Some of that trip is relived in the archives under “The Book”)
I wasn’t sure if I could make it, but the more I thought about it… I had to do it. My Aunt Jay and Uncle Tom live an hour from Harrisville, so I could also visit them. I called Craig Friday to confirm and make plans to drive up together, but he was taking his mom for a round of chemo that morning and driving up after with a full car. He didn’t think I’d make it, so if I wanted to go, I’d have to drive up alone.
I hadn’t driven alone that far since my surgery. I guess there was no reason why I couldn’t do it, but the thought made me a bit uneasy. Four hours alone in the car. What if I get too tired? What if I get sick? What the hell…DO IT! I won’t tell my Aunt and Uncle I’m coming. I’ll surprise them on my return home.
I talked it over with mom to make sure she’d be OK while I was gone for the weekend. After all, I was only going for two days…what could go wrong???
I packed a weekend bag, loaded the car up with nutritional supplies, readied the CD player with traveling music, set the GPS for Harrisville, USA and off I went! The drive was grueling. I was exhausted, so I stopped for gas and coffee hoping for a second wind. Maybe this wasn’t the wisest idea, but it just had to be. Something was pushing me saying, “This is something you must to do.”
When I arrived in Harrisville, I noticed nothing had changed all these years. I could see Gloria in the upstairs window as I approached. I rang the bell and heard the familiar bark of the family dog. Craig had made some modifications to the cottage, but it still felt the same as it did 20 years before, warm, peaceful, and calming.
I made my way up the steep staircase with Gloria cheerfully greeting me at the landing, decked out in her turban, typically warn by those who lose their hair during chemo. I was exhausted, but all I could think of was Gloria. This woman had a dose of chemo that morning, drove four hours in a car with a dog, made her way up these steep stairs, and still managed a radiant smile as I gave her a big hug! This was going to be a great weekend! That night we all relaxed and chatted long, catching up on life before pouring ourselves into bed.
Morning soon came, Craig and Aaron took off to the park where the barber shoppers where beginning to congregate, readying for next weekend’s festivities. I was too tired to go and this gave me the opportunity to catch up more with Gloria. We always seem to get very personal when we have private time together. She’s a very open and caring woman, warm, smart, very opinionated, but considerate.
That afternoon, with Craig and Aaron away, Gloria took a nap while I took advantage of the private sand beach with the family dog. It was amazing! I set up a beach chair against the waters edge, nestled myself into the chair, pressed my toes deep into the cool wet sand as the gentle waves of Lake Huron softly licked my feet. The dog played ball as I threw it into the water and he waited until it was washed ashore.
The sun was warm, 80’s with a meandering breeze. It didn’t take me long to realize I was totally alone. Not a soul, just the dog and I on the beach for as far as I could see. It was so surreal. As each wave massaged my feet with its cool wetness, I felt as if I hadn’t a care in the world. For one brief afternoon, I was alone, no traffic, no doctors, no people, not a care. I felt stronger, somehow revived. I was literally alone in the world with nothing more than my thoughts and a dog with a penchant for playing fetch.
Each breath brought me a deeper sense of peace. The real world drifted away as I began to realize how special this day was. Such a rare moment and I relished every drop of it. So relaxed, I drifted off peacefully for a brief nap.
With an alarming screech of a seagull soaring above, I awoke. A calming smile graced my cancer battled face as I endeavored to explore the waters edge more thoroughly. I began a slow walk. Footprints in the sand, one sinking step after another, I carefully placed each foot as I made my way down the crooked edge of the great lake. This day was given to me as a small gift and I knew it.
Blissfully, I walked for what felt like miles, examining my surroundings with slow motion, childlike enthusiasm. The sky a vivid blue, devoid of clouds. The lake making itself known with calming sounds as playful waves kissed the sun drenched shoreline. Tall grasses of emerald green danced rhythmically back and forth, playfully exchanging hues in the warm loving breeze. Small shells and rocks of granite buried within the golden grains of sand glistened in the afternoon sunlight as I drew deep cleansing breaths of this elixir of life. With each breath more energized, intricately connected to the surreal world afore me. Still, I was alone in my present and it was peaceful and good.
Peace B
Tune in next time to find out: Why mom ends up back in the hospital, and Aaron has his first Weenie roast, while Brian meets yet ANOTHER breast cancer survivor at the bonfire singing harmony.
Part 2
Before I came to Michigan, I mentioned to Craig, if possible, I would love to spend a weekend at the family cottage in Harrisville to decompress and forget the world for a few days. It’s one of those small towns where everybody knows each other and you hope the rest of the world doesn’t find your hidden little gem.
Craig and the family were headed up for the holiday weekend. Craig’s father, Tom was a big Barbershopper and every Labor Day weekend the little town of Harrisville, Michigan (population 514) is taken over by thousands of people participating in a National Jamboree known as Harmony Weekend. There is a grand parade, craft shows, and Barbershop Quartets singing harmonious tags. The event is sponsored by the Society for the Preservation and Encouragement of Barber Shop Quartet Singing in America. I wasn’t sure if I could make it, but I thought it would be a great get away with family/friends.
My mother was stable, but sleeping a lot. She wasn’t eating much, but that’s always part of our struggle. My biggest concern was all the pain medicines she was taking. She LOVES her pain meds, but what they had her taking was criminal in my opinion! Her menu: a Fentanyl patch, 10mg Vicodin, Ultram, Dilaudid, plus Tylenol 4’s for desert! And her doctors wonder why she can’t walk or get out of bed! Can you say, “I’ve fallen and I can’t get up…I can't feel anything…nor do I care!” HOLY SHIT BATMAN! She couldn’t complain if she wanted to!
I had so many people I wanted to see, but very little time to do so. As my week progressed, I found myself at another dinner table. Longtime friends Michael and Deborah invited me for dinner. Deb and I grew up together. She has always been like a sister to me. When I moved to California, Mike and Deb soon followed. Mike’s job relocated him to San Jose. Long story short, Deborah went to work for me as my PA/Office Manager. For over 5 years she helped me manage and grow my business. Without her, my business success would have been minimized. Out of 3 children, their youngest son, Nathaniel was still at home and joined us for the feast.
I was so excited to see them. We talk on the phone often, but nothing beats hugs from true friends. Deb made me some homemade soup, but when I saw she had cooked some pork in a pressure cooker, I just had to try some!
The flavor was awesome, it was tender, but alas the meat was dryer than the venison and more difficult to chew. I began to wonder if I would have trouble with some foods more than others. Maybe it wasn’t going to be as simple as I thought. I know that my salivary glands are not producing a normal amount, which could be a big part of the problem. I finished my homemade cream of broccoli soup and enjoyed the conversation late into the evening. Relearning to prepare foods differently and eat all over again is going to be a dreadful task.
As the weekend drew nearer, I called Craig to see if his family was still headed up North. Indeed they were. Craig was taking his mother, Gloria up to the cottage the weekend before Labor Day. Aaron was also going, but Jill and Wayne would not arrive until next Labor Day Weekend, so I would miss them.
With Gloria now going, I wanted to go all the more. Gloria is in the midst of her own battle with breast cancer (again) and I wanted to see her and give her a big hug! I hadn’t seen her in years, so this was a must. As sad as it sounds, I thought... given that we both have cancer, it might be the last opportunity we'd have together. The last time we vacationed together, I was in college and Gloria, Tom, Craig, and I traveled to Los Angles and Vegas. (Some of that trip is relived in the archives under “The Book”)
I wasn’t sure if I could make it, but the more I thought about it… I had to do it. My Aunt Jay and Uncle Tom live an hour from Harrisville, so I could also visit them. I called Craig Friday to confirm and make plans to drive up together, but he was taking his mom for a round of chemo that morning and driving up after with a full car. He didn’t think I’d make it, so if I wanted to go, I’d have to drive up alone.
I hadn’t driven alone that far since my surgery. I guess there was no reason why I couldn’t do it, but the thought made me a bit uneasy. Four hours alone in the car. What if I get too tired? What if I get sick? What the hell…DO IT! I won’t tell my Aunt and Uncle I’m coming. I’ll surprise them on my return home.
I talked it over with mom to make sure she’d be OK while I was gone for the weekend. After all, I was only going for two days…what could go wrong???
I packed a weekend bag, loaded the car up with nutritional supplies, readied the CD player with traveling music, set the GPS for Harrisville, USA and off I went! The drive was grueling. I was exhausted, so I stopped for gas and coffee hoping for a second wind. Maybe this wasn’t the wisest idea, but it just had to be. Something was pushing me saying, “This is something you must to do.”
When I arrived in Harrisville, I noticed nothing had changed all these years. I could see Gloria in the upstairs window as I approached. I rang the bell and heard the familiar bark of the family dog. Craig had made some modifications to the cottage, but it still felt the same as it did 20 years before, warm, peaceful, and calming.
I made my way up the steep staircase with Gloria cheerfully greeting me at the landing, decked out in her turban, typically warn by those who lose their hair during chemo. I was exhausted, but all I could think of was Gloria. This woman had a dose of chemo that morning, drove four hours in a car with a dog, made her way up these steep stairs, and still managed a radiant smile as I gave her a big hug! This was going to be a great weekend! That night we all relaxed and chatted long, catching up on life before pouring ourselves into bed.
Morning soon came, Craig and Aaron took off to the park where the barber shoppers where beginning to congregate, readying for next weekend’s festivities. I was too tired to go and this gave me the opportunity to catch up more with Gloria. We always seem to get very personal when we have private time together. She’s a very open and caring woman, warm, smart, very opinionated, but considerate.
That afternoon, with Craig and Aaron away, Gloria took a nap while I took advantage of the private sand beach with the family dog. It was amazing! I set up a beach chair against the waters edge, nestled myself into the chair, pressed my toes deep into the cool wet sand as the gentle waves of Lake Huron softly licked my feet. The dog played ball as I threw it into the water and he waited until it was washed ashore.
The sun was warm, 80’s with a meandering breeze. It didn’t take me long to realize I was totally alone. Not a soul, just the dog and I on the beach for as far as I could see. It was so surreal. As each wave massaged my feet with its cool wetness, I felt as if I hadn’t a care in the world. For one brief afternoon, I was alone, no traffic, no doctors, no people, not a care. I felt stronger, somehow revived. I was literally alone in the world with nothing more than my thoughts and a dog with a penchant for playing fetch.
Each breath brought me a deeper sense of peace. The real world drifted away as I began to realize how special this day was. Such a rare moment and I relished every drop of it. So relaxed, I drifted off peacefully for a brief nap.
With an alarming screech of a seagull soaring above, I awoke. A calming smile graced my cancer battled face as I endeavored to explore the waters edge more thoroughly. I began a slow walk. Footprints in the sand, one sinking step after another, I carefully placed each foot as I made my way down the crooked edge of the great lake. This day was given to me as a small gift and I knew it.
Blissfully, I walked for what felt like miles, examining my surroundings with slow motion, childlike enthusiasm. The sky a vivid blue, devoid of clouds. The lake making itself known with calming sounds as playful waves kissed the sun drenched shoreline. Tall grasses of emerald green danced rhythmically back and forth, playfully exchanging hues in the warm loving breeze. Small shells and rocks of granite buried within the golden grains of sand glistened in the afternoon sunlight as I drew deep cleansing breaths of this elixir of life. With each breath more energized, intricately connected to the surreal world afore me. Still, I was alone in my present and it was peaceful and good.
Peace B
Tune in next time to find out: Why mom ends up back in the hospital, and Aaron has his first Weenie roast, while Brian meets yet ANOTHER breast cancer survivor at the bonfire singing harmony.
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