When Barb and I are driving around and suddenly a traffic signal turns yellow before us I take a very negative perspective of the situation. "We'll never make it. Not a chance. We'll never get there in time," I say.
Then we typically do.
It's odd. Don't ask me. I don't know much about it. But I've found if I expect the worst I'm pretty darn thrilled when the best happens instead.
I think I like to live in the reality that not everything is going to go just the way I want - and that's OK because I'm prepared for it.
I know there are a lot of high hopes that the doctor I am meeting with in New York City will have access to something magical that will turn my cancer journey around. I wouldn't be going on this trek if I didn't think that was a possibility. But, all in all, I'm not expecting any miracles. It's like the yellow light, I never expect that I'll get there before it changes red.
It sounds like a negative spirit. But it is really part of an overall spirit in preparation for it all. If you're just bubbly with positive anticipation all the time life will find ways to consistently let you down. Having some expectations that things will not always go well are part of learning to live life with a positive expectations while being grounded in the realities of our lives. In other words, you prepare yourself to live well whether it be through great times or tough times. Life will bring both to your door.
One very real story about Sloan-Kettering in NYC which fills me with hope is the experience of one of our church members. She fealt as though she was down to her last straw when her son took her to the big cancer center for the first time. But from that visit everything started to change. The doctor recommended a drug for her cancer that the FDA itself hadn't recommended yet for that cancer. Before long she had gone from a slump of fabric in a corner pew to walking into the church with her head held high and a tap in her step.
"Our Father who art in heaven, hallowed be thy name,
Thy kingdom come, thine will be done, on Earth as it is in Heaven,
Give us this day our daily bread,
and forgive us for our tresspasses,
as we forgive those who trespass against us.
Lead us not into temptation.
But deliver us from evil.
For thine is the kingdom, the power, and the glory. Amen."
I'll let you all known how we made out on this blog on Wednesday.
We'll never make that yellow light, never, never make it - HEY! We did!
Saturday, October 31, 2009
Friday, October 30, 2009
Almost Home
My Dad is scheduled for a CT scan today to take a closer look at swelling he has had through his mid-section into his ankles. For some reason he is collecting fluids, especially in his ankles. It certainly would be nice to discover the cause.
But regardless, the word on the street is that the nursing facility is going to give their blessing to have my father discharged my mid-week next week. The family has been very supportive of this move. We all feel that the nursing facility has served its purpose, and we are thankful. But it is past time for him to come home, home to the house he built, the home he knows, the place where he is most comfortable.
I can relate to his desire to leave the nursing facility. When I had my surgery I couldn't wait to get out of the hospital. It was impossible to relax. There was constantly people coming into my room, whether it be a janitor or a nurse checking my vital signs. There was constant "beeps" and "bonks" and "buzzes."
When my surgeon visited me I told him, "You know the hospital is a terrible place for sick people." I was surprised to see him so quickly agree. He told me after his father-in-law's surgery he took all the equipment and his father-in-law home.
I can already picture my Dad relaxed, enjoying the view from his home, and playing with Noel, their energetic three-legged dog. And I can already picture his smile.
Home is where he should be.
I wish I was in better shape to be more help. This is the time of my life where I should be offering help to my parents, and Barb's parents, not the other way around. I'm much more used to, and comfortable with, giving than receiving. It's definitely one thing about this cancer that does bother me sometimes. I always expected to be the strong guy who would pitch in and help other people out. I never expected to be in the position I'm in, so weak, so needy. All I can do is humbly feel thankful for all of the support that has circled around me.
All the reservations are set for our trip to Memorial Sloan-Kettering. We're scheduled to meet a kidney cancer specialist at 3:45 p.m. Monday, and I've been told to expect to be there for three-hours.
At this point the only possible kink could be my insurance company (big surprise there!). My family physician was having some problems getting a referral through Aetna since this NYC doctor might not be considered "in-network." I'm not going to let that get in the way of plans. With or without the insurance company on board, we're going.
I have always understood that my HMO requires a referral from my family doctor. The "in-network" stuff is news to me. I don't understand any significance to that other than another inane reason for the insurance company not to cover care. If my family doctor wants me to see this specialist then who is Aetna to deny it? Or what possible logical reason could they have to deny it?
It's not like I'm going to see a herbalist in Guatemala!
Susan is generously heading our way this morning to take me for my injection and then for bloodwork. First they'll inject some stuff into me, then they'll take some blood out.
You'd think there would be a way to do that all in one stick. (shrugging shoulders)
But regardless, the word on the street is that the nursing facility is going to give their blessing to have my father discharged my mid-week next week. The family has been very supportive of this move. We all feel that the nursing facility has served its purpose, and we are thankful. But it is past time for him to come home, home to the house he built, the home he knows, the place where he is most comfortable.
I can relate to his desire to leave the nursing facility. When I had my surgery I couldn't wait to get out of the hospital. It was impossible to relax. There was constantly people coming into my room, whether it be a janitor or a nurse checking my vital signs. There was constant "beeps" and "bonks" and "buzzes."
When my surgeon visited me I told him, "You know the hospital is a terrible place for sick people." I was surprised to see him so quickly agree. He told me after his father-in-law's surgery he took all the equipment and his father-in-law home.
I can already picture my Dad relaxed, enjoying the view from his home, and playing with Noel, their energetic three-legged dog. And I can already picture his smile.
Home is where he should be.
I wish I was in better shape to be more help. This is the time of my life where I should be offering help to my parents, and Barb's parents, not the other way around. I'm much more used to, and comfortable with, giving than receiving. It's definitely one thing about this cancer that does bother me sometimes. I always expected to be the strong guy who would pitch in and help other people out. I never expected to be in the position I'm in, so weak, so needy. All I can do is humbly feel thankful for all of the support that has circled around me.
All the reservations are set for our trip to Memorial Sloan-Kettering. We're scheduled to meet a kidney cancer specialist at 3:45 p.m. Monday, and I've been told to expect to be there for three-hours.
At this point the only possible kink could be my insurance company (big surprise there!). My family physician was having some problems getting a referral through Aetna since this NYC doctor might not be considered "in-network." I'm not going to let that get in the way of plans. With or without the insurance company on board, we're going.
I have always understood that my HMO requires a referral from my family doctor. The "in-network" stuff is news to me. I don't understand any significance to that other than another inane reason for the insurance company not to cover care. If my family doctor wants me to see this specialist then who is Aetna to deny it? Or what possible logical reason could they have to deny it?
It's not like I'm going to see a herbalist in Guatemala!
Susan is generously heading our way this morning to take me for my injection and then for bloodwork. First they'll inject some stuff into me, then they'll take some blood out.
You'd think there would be a way to do that all in one stick. (shrugging shoulders)
Thursday, October 29, 2009
It's Like a Nice Dip in Cool Waters
For the first time in weeks Barb and I don't have to go anywhere. No medical facilities, no nurses or doctors, no radiation, no needles, it's just us and Freckles.
Well we do have someone coming here, the guys from the natural gas company. From what we understand they are planning on increasing the pressure in the pipes through Marietta and they'll need access to our basement up to four different times today. I don't understand the benefit of increasing the pressure in the pipes. But that's why I'm an artist and not an engineer.
If they're rude we'll sick Freckles the attack cat on them.
The Phils won the first game of the world series in New York City last night. I've been a life-long Phillies fan so it was great news for me to wake up to. Growing up I would fall asleep to the Phillies on the radio every night a game was on. Although I was never a great baseball player, baseball has always been an important element in my life.
The same reason I like baseball is pretty much the same reason I'm no good at baseball. It is a laid-back, leisurely kind of sport. George Carlin did say it well, "Baseball is played in a park. Football is played in a stadium, War Memorial Stadium."
My difficulty playing baseball was the overall pace of the game. I would stand out there in the outfield, watching a butterfly, looking at the people who were out to watch the game, and then all of a sudden, "CRACK!" All of a sudden the ball would be flying in my direction and I'd have to go from standing still to running at full speed in half-a-second.
I did better with sports that had constant motion, like basketball or soccer. But I still loved to take in a leisurely afternoon baseball game.
Go Phillies!
Yesterday we pulled together all of the medical records that Memorial Sloan-Kettering required to book an appointment with a doctor there for us. It required a lot of phone calls and faxes and the phone rang through most of the day yesterday.
We still need to collect a few more medical records that we're expected to hand carry to Sloan-Kettering. Our main objective for today will be to secure train and hotel reservations. We were a bit surprised yesterday to learn that our first choice of hotel was completely booked due to the world series and the marathon both occuring in New York City.
We have found some available options. But we'll have to jump on those options early this morning.
I'll be talking to Amtrack to try to discover if really tall guys have any options at all for comfortable seats. When you're 6'4" you learn that the world is not necessarily built for you.
I learned this past week that I need to take two pain pills to get the effect that most people get from one. I learned that with the nurse's help. But that really is not something new to me. I've always known that I've needed a little higher than the recommended does of medicine that works for most people.
I haven't been on a train for many years. I imagine they're about as comfortable as an airplane. Airplanes do not work for me at all! So I'm really hoping a kind Amtrack employee can guide me into a comfortable seat.
So it's a day of trains, and hotel reservations, and gas company employees dragging their dirty boots in and out of our house. At least no one is planning on sticking me with a needle! Woohoo!
Well we do have someone coming here, the guys from the natural gas company. From what we understand they are planning on increasing the pressure in the pipes through Marietta and they'll need access to our basement up to four different times today. I don't understand the benefit of increasing the pressure in the pipes. But that's why I'm an artist and not an engineer.
If they're rude we'll sick Freckles the attack cat on them.
The Phils won the first game of the world series in New York City last night. I've been a life-long Phillies fan so it was great news for me to wake up to. Growing up I would fall asleep to the Phillies on the radio every night a game was on. Although I was never a great baseball player, baseball has always been an important element in my life.
The same reason I like baseball is pretty much the same reason I'm no good at baseball. It is a laid-back, leisurely kind of sport. George Carlin did say it well, "Baseball is played in a park. Football is played in a stadium, War Memorial Stadium."
My difficulty playing baseball was the overall pace of the game. I would stand out there in the outfield, watching a butterfly, looking at the people who were out to watch the game, and then all of a sudden, "CRACK!" All of a sudden the ball would be flying in my direction and I'd have to go from standing still to running at full speed in half-a-second.
I did better with sports that had constant motion, like basketball or soccer. But I still loved to take in a leisurely afternoon baseball game.
Go Phillies!
Yesterday we pulled together all of the medical records that Memorial Sloan-Kettering required to book an appointment with a doctor there for us. It required a lot of phone calls and faxes and the phone rang through most of the day yesterday.
We still need to collect a few more medical records that we're expected to hand carry to Sloan-Kettering. Our main objective for today will be to secure train and hotel reservations. We were a bit surprised yesterday to learn that our first choice of hotel was completely booked due to the world series and the marathon both occuring in New York City.
We have found some available options. But we'll have to jump on those options early this morning.
I'll be talking to Amtrack to try to discover if really tall guys have any options at all for comfortable seats. When you're 6'4" you learn that the world is not necessarily built for you.
I learned this past week that I need to take two pain pills to get the effect that most people get from one. I learned that with the nurse's help. But that really is not something new to me. I've always known that I've needed a little higher than the recommended does of medicine that works for most people.
I haven't been on a train for many years. I imagine they're about as comfortable as an airplane. Airplanes do not work for me at all! So I'm really hoping a kind Amtrack employee can guide me into a comfortable seat.
So it's a day of trains, and hotel reservations, and gas company employees dragging their dirty boots in and out of our house. At least no one is planning on sticking me with a needle! Woohoo!
Wednesday, October 28, 2009
Warrior Mode
When I first was diagnosed with cancer I met a gentleman online who had kidney cancer also and maintained his own blog. He was also in publishing and was an established outdoor writer and editor. He drew many others with this disease to his blog and he inspired many, including myself, to fight. He referred to everyone with kidney cancer as a warrior. He was in Georgia. We stayed in touch regularly. Eventually, sadly, he quietly passed away.
I've never forgotten his "warrior" term. It took a warrior, he would argue, to fight through this horrible disease.
I've always counted myself as one of those warriors.
I'm a pretty easy-going, very mellow guy. To me, anger or exciteability has just never seemed very productive. I see people, almost everyday, get so easily upset over some of the simplest things. It just leaves me scratching my head and wondering why.
As my treatment process has gone there have been plenty of highs and plenty of lows. It's the nature of the beast. It's difficult to know when a chemo stops working until bad things start happening in the body. As a "warrior" I'd just gather my strength and work the bad back into good.
But through the past few months, it hasn't been working that way. This warrior has been continuing to exert strength...but now I'm also starting to get ticked - ticked at cancer.
You can only get poked with a hot stick for so long before you stand up and say, "OK. Now listen. That's enough! Knock it off!"
I'm officially giving cancer fair warning - that's enough!
We are calling the big dogs in. An appointment has been made at Memorial Sloan-Kettering in New York City for this upcoming Monday. Sloan-Kettering is an entire hospital dedicated solely to cancer. The hope is that they may have some access to drugs that my oncologist may not. We still need to get them a copy of one medical report today. But otherwise the appointment is set.
We're going to travel to New York City on Sunday, stay overnight in a hotel, and then meet with the doctor on Monday, before returning home.
Barb and I are both anxious to see what comes from this consultation and are prepared to follow whatever course is recommended.
We'll make sure to wear our Phillies shirts. lol
Radiation has created a lump in the back of my throat making it virtually impossible to swallow and very sore when I do.
Radiation has created dry itchy skin on my chest.
Radiation has created a sour tummy.
Cancer has invaded a vertabrae, pinching nerves and leaving me in constant pain for months.
Pain pills create constipation. Radiation and Interferon injections created sleepiness.
This morning I woke up with an area of swollen, bleeding gums. Radiation also?
OK. What else do you have for me cancer? C'mon. Let's see what you've got. I'm ready. Give me your worst. I'm not giving up! LET'S GO!
I've never forgotten his "warrior" term. It took a warrior, he would argue, to fight through this horrible disease.
I've always counted myself as one of those warriors.
I'm a pretty easy-going, very mellow guy. To me, anger or exciteability has just never seemed very productive. I see people, almost everyday, get so easily upset over some of the simplest things. It just leaves me scratching my head and wondering why.
As my treatment process has gone there have been plenty of highs and plenty of lows. It's the nature of the beast. It's difficult to know when a chemo stops working until bad things start happening in the body. As a "warrior" I'd just gather my strength and work the bad back into good.
But through the past few months, it hasn't been working that way. This warrior has been continuing to exert strength...but now I'm also starting to get ticked - ticked at cancer.
You can only get poked with a hot stick for so long before you stand up and say, "OK. Now listen. That's enough! Knock it off!"
I'm officially giving cancer fair warning - that's enough!
We are calling the big dogs in. An appointment has been made at Memorial Sloan-Kettering in New York City for this upcoming Monday. Sloan-Kettering is an entire hospital dedicated solely to cancer. The hope is that they may have some access to drugs that my oncologist may not. We still need to get them a copy of one medical report today. But otherwise the appointment is set.
We're going to travel to New York City on Sunday, stay overnight in a hotel, and then meet with the doctor on Monday, before returning home.
Barb and I are both anxious to see what comes from this consultation and are prepared to follow whatever course is recommended.
We'll make sure to wear our Phillies shirts. lol
Radiation has created a lump in the back of my throat making it virtually impossible to swallow and very sore when I do.
Radiation has created dry itchy skin on my chest.
Radiation has created a sour tummy.
Cancer has invaded a vertabrae, pinching nerves and leaving me in constant pain for months.
Pain pills create constipation. Radiation and Interferon injections created sleepiness.
This morning I woke up with an area of swollen, bleeding gums. Radiation also?
OK. What else do you have for me cancer? C'mon. Let's see what you've got. I'm ready. Give me your worst. I'm not giving up! LET'S GO!
Tuesday, October 27, 2009
I Can See the Finish Line
Today is the last of 15-days of radiation to my cervical spine. Woo-freakin'-hoo!
Even when the treatments are over radiation does keep working for a couple more weeks. As I've said many times, radiation is a slow poisoning to the body. My body doesn't care for it at all.
But it's necessary. The cancer in my spine could not be allowed to continue even one day longer. It was threatening the stability of a vertabrae and if that was jeopardized I would have even bigger problems.
There's quite a difference between medical marketing and medical realities. I guess that's not much of a surprise since salesmanship runs the show these days. Radiation is often sold as this simple to use, precise, gas that can easily knock-out cancerous tumors without damage to neighboring body parts and minimal side-effects.
Oooooook.
Just explain that to the huge sore lump on the inside of my throat that has me eating nothing but soft food.
Just explain that to my energy levels which the radiation has drained to new lows.
Just explain that to my belly who is in full revolt.
After today it can only get better. Then I'll have a clean perspective on what the Interferon injections are doing to the body. Never a dull moment around here!
Even when the treatments are over radiation does keep working for a couple more weeks. As I've said many times, radiation is a slow poisoning to the body. My body doesn't care for it at all.
But it's necessary. The cancer in my spine could not be allowed to continue even one day longer. It was threatening the stability of a vertabrae and if that was jeopardized I would have even bigger problems.
There's quite a difference between medical marketing and medical realities. I guess that's not much of a surprise since salesmanship runs the show these days. Radiation is often sold as this simple to use, precise, gas that can easily knock-out cancerous tumors without damage to neighboring body parts and minimal side-effects.
Oooooook.
Just explain that to the huge sore lump on the inside of my throat that has me eating nothing but soft food.
Just explain that to my energy levels which the radiation has drained to new lows.
Just explain that to my belly who is in full revolt.
After today it can only get better. Then I'll have a clean perspective on what the Interferon injections are doing to the body. Never a dull moment around here!
Saturday, October 24, 2009
(Sigh) It's the Weekend
For all those out in the working world, I'm sure Friday night doesn't come soon enough. After a week of hard work doing what you do you're ready for the weekend, a little rest, a little fun, a couple of days to call your own.
Boy am I ready for the weekend.
My tummy is a little sour this morning from medications. I have a very sore lump in the back of my throat from radiation. I'm feeling slow and lazy from radiation and medication. But, it is Saturday, and for once I don't have to go anywhere.
For once I don't have to go to the health campus and be stuck by needles. For once I don't have to go to the health campus and have radiation aimed through my spine and neck.
(Sigh) I never thought this weekend would come.
I have little planned for the weekend except relaxing and recuperating. Today English Premier League soccer is on all morning and college football is on all afternoon.
I can only eat things like chocolate pudding, apple sauce, and spaghetti. But it will have to do for now.
I wouldn't be surprised at all if Freckles and I snuck a nap into the day together.
Barb and I were in the chemo treatment room yesterday when a gentleman walked in with a shirt that said "Cancer Sucks." I guess that pretty much sums it up.
Boy am I ready for the weekend.
My tummy is a little sour this morning from medications. I have a very sore lump in the back of my throat from radiation. I'm feeling slow and lazy from radiation and medication. But, it is Saturday, and for once I don't have to go anywhere.
For once I don't have to go to the health campus and be stuck by needles. For once I don't have to go to the health campus and have radiation aimed through my spine and neck.
(Sigh) I never thought this weekend would come.
I have little planned for the weekend except relaxing and recuperating. Today English Premier League soccer is on all morning and college football is on all afternoon.
I can only eat things like chocolate pudding, apple sauce, and spaghetti. But it will have to do for now.
I wouldn't be surprised at all if Freckles and I snuck a nap into the day together.
Barb and I were in the chemo treatment room yesterday when a gentleman walked in with a shirt that said "Cancer Sucks." I guess that pretty much sums it up.
Friday, October 23, 2009
Baby Food
When I went in for my radiation treatment yesterday I mentioned to the techs that the day before I started to notice a lump in my throat. I told them that my wife thought that we were told to expect this.
"I hate to tell you this Mr. Albert," the one said. "But your wife is right."
"That's OK," I answered. "She usually is."
I've also been getting really, really sleepy I said to them.
"That's us too," the tech said.
I was glad I asked. At least now I knew that these effects were normal and expected.
After yesterday's treatment the lump in the back of my throat became even more sensitive. I took one bite of dinner last night and there was no way that was going to work. I tried to swallow one small piece of beef and my throat inflamed in incredible pain. I couldn't believe how bad it was.
Fortunately Barb and Susan stopped on the way home and picked me up some jello and pudding and apple sauce. I guess I'm on a baby food only diet for the next week or so. I'm sure I'll be dropping a few pounds along the way.
I'm officially laid up now for the next week or so, as I struggle to eat and struggle to stay awake. Radiation is just plain nasty. The body just does not appreciate it at all.
Today's treatment is very early and we'll be getting our act together to get to the health campus. I imagine after today's treatment my throat will be even worse, and I will be even more fatiqued. Fortunately my last radiation treatment will occur on Tuesday.
Here we go!
"I hate to tell you this Mr. Albert," the one said. "But your wife is right."
"That's OK," I answered. "She usually is."
I've also been getting really, really sleepy I said to them.
"That's us too," the tech said.
I was glad I asked. At least now I knew that these effects were normal and expected.
After yesterday's treatment the lump in the back of my throat became even more sensitive. I took one bite of dinner last night and there was no way that was going to work. I tried to swallow one small piece of beef and my throat inflamed in incredible pain. I couldn't believe how bad it was.
Fortunately Barb and Susan stopped on the way home and picked me up some jello and pudding and apple sauce. I guess I'm on a baby food only diet for the next week or so. I'm sure I'll be dropping a few pounds along the way.
I'm officially laid up now for the next week or so, as I struggle to eat and struggle to stay awake. Radiation is just plain nasty. The body just does not appreciate it at all.
Today's treatment is very early and we'll be getting our act together to get to the health campus. I imagine after today's treatment my throat will be even worse, and I will be even more fatiqued. Fortunately my last radiation treatment will occur on Tuesday.
Here we go!
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