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!
Thursday, October 22, 2009
Where Would I Be?
I knew the past couple weeks would be tough on me. Everyday I would have to go to the health campus for radiation, for chemo injections, for bloodwork and tests. I would have to do this with great pain from the pinched nerves in my vertabrae and a very sour stomach from the injections.
But I hate to be a burden to anyone.
My attitude toward all of this was that I had a very steep hill to climb, with a very heavy load to carry. But I was going to suck it up and make that climb without asking for help.
I didn't want to negatively affect anyone else's life.
My thought was that if someone came along and asked if they could help carry my load I would happily, gracefully, thankfully, say "Yes."
God bless Barb's Mom for helping me carry this load. I'm getting closer and closer to the top of the hill.
Every day I think to myself, "I can do this. I can drive in today. I can handle it."
Every day on the way home I think to myself, "I'm so glad Barb's Mom is driving. I feel like a train wreck."
There are angels around us every where.
But I hate to be a burden to anyone.
My attitude toward all of this was that I had a very steep hill to climb, with a very heavy load to carry. But I was going to suck it up and make that climb without asking for help.
I didn't want to negatively affect anyone else's life.
My thought was that if someone came along and asked if they could help carry my load I would happily, gracefully, thankfully, say "Yes."
God bless Barb's Mom for helping me carry this load. I'm getting closer and closer to the top of the hill.
Every day I think to myself, "I can do this. I can drive in today. I can handle it."
Every day on the way home I think to myself, "I'm so glad Barb's Mom is driving. I feel like a train wreck."
There are angels around us every where.
Wednesday, October 21, 2009
When Everybody Knows Your Name
I don't know what makes Barb and I such memorable characters. But everyone at the Health Campus knows us well. We don't formally have to check-in. We just show up. They see us, and instantly tell us that they'll let the nurses know we're here.
I don't know if that's a good thing. I'd rather be well known at something other than a medical facility. We are there often enough that I often ask when we'll be getting time-cards.
Into next week we will still need to make daily appearances. Radiation to my spine continues every day into next week. Injections of Interferon continue on Mondays, Wednesdays and Fridays.
From my past experiences with radiation, there will still be some time to expect results even after the treatments are finished. The radiation will slowly poison and kill the cancer in my vertabrae. There is great hope that this will unpinch the nerves that are causing me pain. But there is no guarantee.
One thing I learned this week was that the length of time it took to diagnose my pain problem certainly had a bad overall affect on things. While the cancer was eating away at my vertabrae my pain was first diagnosed as a strained shoulder muscle, then a rotator cuff issue, then a pinched nerve, before finally an MRI was ordered and the problem was found.
It was a little odd because one thing I've noticed since I was diagnosed with cancer was that cancer gets blamed for everything. Before cancer came to town no doctor would ever blame a sore shoulder on cancer. But after it was diagnosed, if I sneezed it seemed to be blamed on cancer.
For some reason, (bad luck?) the doctors weren't guessing cancer as the cause. The problem now is that the vertabrae is run down enough that I have now been instructed to not to any heavy lifting - ever again. The fear is excessive pressure would crush the damaged vertabrae and cause me some REAL problems.
So much for the big, stupid, male gorilla activities around the house. Barb is now officially the man and the woman of the house. I guess I join Freckles with a status of "pet."
The Interferon injections will continue for weeks yet before the doctor will consider it a complete "cycle." The side-effects of Interferon are listed as flu-like symptoms. I've been feeling those symptoms more and more. The question, though, then becomes do I have flu-like symptoms or do I have the flu? I don't know. Lately Barb and I have been awfully "sniffly."
Once the cycle of Interferon is complete we'll be heading up to meet with doctors at Sloan-Kettering. They don't want to meet with me until I've finished a cycle of treatment. They want to see me with a "clean sheet."
Barb was dedicated to raking leaves yesterday, although I asked her not to worry about them. She has enough going on. I figured in this economy I'd be able to find a teen somewhere in this town who would appreciate 10 bucks an hour for raking. But she went at it - 11 big bags sitting out by the back alley waiting to be picked up.
She is the beauty, the brains, and the brawn of this house.
I don't know if that's a good thing. I'd rather be well known at something other than a medical facility. We are there often enough that I often ask when we'll be getting time-cards.
Into next week we will still need to make daily appearances. Radiation to my spine continues every day into next week. Injections of Interferon continue on Mondays, Wednesdays and Fridays.
From my past experiences with radiation, there will still be some time to expect results even after the treatments are finished. The radiation will slowly poison and kill the cancer in my vertabrae. There is great hope that this will unpinch the nerves that are causing me pain. But there is no guarantee.
One thing I learned this week was that the length of time it took to diagnose my pain problem certainly had a bad overall affect on things. While the cancer was eating away at my vertabrae my pain was first diagnosed as a strained shoulder muscle, then a rotator cuff issue, then a pinched nerve, before finally an MRI was ordered and the problem was found.
It was a little odd because one thing I've noticed since I was diagnosed with cancer was that cancer gets blamed for everything. Before cancer came to town no doctor would ever blame a sore shoulder on cancer. But after it was diagnosed, if I sneezed it seemed to be blamed on cancer.
For some reason, (bad luck?) the doctors weren't guessing cancer as the cause. The problem now is that the vertabrae is run down enough that I have now been instructed to not to any heavy lifting - ever again. The fear is excessive pressure would crush the damaged vertabrae and cause me some REAL problems.
So much for the big, stupid, male gorilla activities around the house. Barb is now officially the man and the woman of the house. I guess I join Freckles with a status of "pet."
The Interferon injections will continue for weeks yet before the doctor will consider it a complete "cycle." The side-effects of Interferon are listed as flu-like symptoms. I've been feeling those symptoms more and more. The question, though, then becomes do I have flu-like symptoms or do I have the flu? I don't know. Lately Barb and I have been awfully "sniffly."
Once the cycle of Interferon is complete we'll be heading up to meet with doctors at Sloan-Kettering. They don't want to meet with me until I've finished a cycle of treatment. They want to see me with a "clean sheet."
Barb was dedicated to raking leaves yesterday, although I asked her not to worry about them. She has enough going on. I figured in this economy I'd be able to find a teen somewhere in this town who would appreciate 10 bucks an hour for raking. But she went at it - 11 big bags sitting out by the back alley waiting to be picked up.
She is the beauty, the brains, and the brawn of this house.
Monday, October 19, 2009
Clearer Vision
I was lying down for a nap Saturday afternoon when I heard the phone ring.
Now a nap has to be on top of the comforter on the bed, in your full clothes (except shoes). If you climb under the blankets at all it is more than a nap. It's going back to bed.
Barb had the upstairs phone downstairs so I wouldn't be disturbed while napping. She's sweet that way. But right after I heard the phone ringing I heard her running up the stairs. I immediately figured that this was something important and that this call was for me. I raced through my head who could possibly be calling. It could be my Mom. It could be the Phillies calling me to play third base. It could be President Obama.
It was my oncologist. No one had been able to reach him for the past week. I know the nurses were peppering him with calls and e-mails. I left one message for him. We though he had run away and joined a salsa band.
He explained to me that he was in Montreal, Canada and he did not have international calling on his cell phone. He was receiving all incoming messages but was not able to respond to anyone.
Well at least it wasn't a salsa band.
He assured me several times that he wasn't "abandoning me." I really didn't think he was. I just felt that he had left for a conference with a lot of nurses and at least one patient (ME!) scratching their heads with questions.
I explained to him that I called the University of Pennsylvania upon his advisement and attempted to make an appointment with a doctor there. The goal was to advise with someone who was considered a kidney cancer specialist for further insight on my condition. The problem was the doctor called back, through his secretary, and explained that he did not feel "experienced enough for my diagnosis."
My oncologist was rather surprised by this. But he did add, "Well at least he was honest about it."
I then told him that I was planning on getting my crew together, hopping on a train, and making an appointment at Sloan-Kettering in New York City. He was all for that. He even knew the head of the kidney cancer department there and gave his hearty endorsement.
My main objective of the day is to make that appointment.
Another frustration I had with my oncologist was his refusal to allow me to go back onto one of the chemotherapies I had previously used. But on the phone he took a complete turnabout, saying that he would never ignore a patient's input and opinion and if that's what I wanted he would be happy to provide it.
I wasn't ready for that, quite surprised. But he did quickly state that chemos used a second time typically only have a five-percent response rate. It gave me something to think about.
So waking up this morning my plan is to first make an appointment in NYC, find a train schedule and a hotel room to match, while continuing my radiation treatments and my Interferon injections all this week.
We have a member of our church congregation who has cancer and at one point was not doing well at all. Her son came down from Connecticut and picked her up and took her to Sloan-Kettering for help. Since then she's been nothing but stronger and healthier. She credits that cancer center for making such a dramatic impact to her cancer care.
We don't have the same type of cancer. But I am hoping for similar results.
Now a nap has to be on top of the comforter on the bed, in your full clothes (except shoes). If you climb under the blankets at all it is more than a nap. It's going back to bed.
Barb had the upstairs phone downstairs so I wouldn't be disturbed while napping. She's sweet that way. But right after I heard the phone ringing I heard her running up the stairs. I immediately figured that this was something important and that this call was for me. I raced through my head who could possibly be calling. It could be my Mom. It could be the Phillies calling me to play third base. It could be President Obama.
It was my oncologist. No one had been able to reach him for the past week. I know the nurses were peppering him with calls and e-mails. I left one message for him. We though he had run away and joined a salsa band.
He explained to me that he was in Montreal, Canada and he did not have international calling on his cell phone. He was receiving all incoming messages but was not able to respond to anyone.
Well at least it wasn't a salsa band.
He assured me several times that he wasn't "abandoning me." I really didn't think he was. I just felt that he had left for a conference with a lot of nurses and at least one patient (ME!) scratching their heads with questions.
I explained to him that I called the University of Pennsylvania upon his advisement and attempted to make an appointment with a doctor there. The goal was to advise with someone who was considered a kidney cancer specialist for further insight on my condition. The problem was the doctor called back, through his secretary, and explained that he did not feel "experienced enough for my diagnosis."
My oncologist was rather surprised by this. But he did add, "Well at least he was honest about it."
I then told him that I was planning on getting my crew together, hopping on a train, and making an appointment at Sloan-Kettering in New York City. He was all for that. He even knew the head of the kidney cancer department there and gave his hearty endorsement.
My main objective of the day is to make that appointment.
Another frustration I had with my oncologist was his refusal to allow me to go back onto one of the chemotherapies I had previously used. But on the phone he took a complete turnabout, saying that he would never ignore a patient's input and opinion and if that's what I wanted he would be happy to provide it.
I wasn't ready for that, quite surprised. But he did quickly state that chemos used a second time typically only have a five-percent response rate. It gave me something to think about.
So waking up this morning my plan is to first make an appointment in NYC, find a train schedule and a hotel room to match, while continuing my radiation treatments and my Interferon injections all this week.
We have a member of our church congregation who has cancer and at one point was not doing well at all. Her son came down from Connecticut and picked her up and took her to Sloan-Kettering for help. Since then she's been nothing but stronger and healthier. She credits that cancer center for making such a dramatic impact to her cancer care.
We don't have the same type of cancer. But I am hoping for similar results.
Saturday, October 17, 2009
Damp, Raw, Cold, Rainy - It's Beautiful
It was very nice this morning to wake up and realize that I don't have to go anywhere today. No hospitals, no doctors, no nurses, no needles, no radiation, I don't have to go to any of these places nor do any of these things - like I did everyday this week.
It's horrible outside today, absolutely terrible. It's 20-degrees cooler than typical October averages. There's a steady rain. It's the kind of raw day you just feel in your bones. They had a couple inches of snow in Happy Valley yesterday just in time for today's Penn State football game. Snow in October?
It's a beautiful day to not have to go anywhere.
Another big thank you to Barb's Mom Susan for getting us everywhere this week. She is so gracious. So giving. So willing to help without hesitation, adjusting her schedule and her life to help us. I feel very humbled by her generosity.
And a big thank you to my Mom both for supporting, helping and coaching me through a difficult week filled with twists and turns and ultimately important decisions. All the while my Mom sorts through her own decision making in support of my Dad.
All evidence points to my Dad returning home from the nursing facility very soon. The reports my Mom have shared with me all seem to indicate that he would be much better off at home, back on the hill. He is quite lucid, very aware, and physically strong. His walking is a bit challenged, but comparable to any 80-plus year old.
Spending a day here and a day there at the house he is much happier in surroundings familiar to him. He built that house. It's where he wants to be. The whole family agrees.
So my Mom met with a social worker to start the discharge process. From what I understand, the social worker is calling a meeting of the "committee" who will interview his doctor, her doctor, nurses, in-home health workers, Donald Duck, Governmor Ed Rendell, Joe Paterno, several Phillies players and a few members of the rock band Aerosmith. They're supposed to get back to my Mom with a decision in about a week.
I'm a little offended by the idea that a group of people I don't know plan to make a decision on whether my Dad is allowed to go back to his home or not. But I guess they're working to protect everyone's best interest. In this world of lawyers I'm guessing liability concerns would prevent the "committee" from ever recommending that someone could leave.
My Mom is playing it nice though, following the rules and guidelines. Let them do their thing because he is coming home regardless.
And one of my main goals of the day? I'm making gumbo, really good shrimp and andouille gumbo! Why of course I have okra!
It's horrible outside today, absolutely terrible. It's 20-degrees cooler than typical October averages. There's a steady rain. It's the kind of raw day you just feel in your bones. They had a couple inches of snow in Happy Valley yesterday just in time for today's Penn State football game. Snow in October?
It's a beautiful day to not have to go anywhere.
Another big thank you to Barb's Mom Susan for getting us everywhere this week. She is so gracious. So giving. So willing to help without hesitation, adjusting her schedule and her life to help us. I feel very humbled by her generosity.
And a big thank you to my Mom both for supporting, helping and coaching me through a difficult week filled with twists and turns and ultimately important decisions. All the while my Mom sorts through her own decision making in support of my Dad.
All evidence points to my Dad returning home from the nursing facility very soon. The reports my Mom have shared with me all seem to indicate that he would be much better off at home, back on the hill. He is quite lucid, very aware, and physically strong. His walking is a bit challenged, but comparable to any 80-plus year old.
Spending a day here and a day there at the house he is much happier in surroundings familiar to him. He built that house. It's where he wants to be. The whole family agrees.
So my Mom met with a social worker to start the discharge process. From what I understand, the social worker is calling a meeting of the "committee" who will interview his doctor, her doctor, nurses, in-home health workers, Donald Duck, Governmor Ed Rendell, Joe Paterno, several Phillies players and a few members of the rock band Aerosmith. They're supposed to get back to my Mom with a decision in about a week.
I'm a little offended by the idea that a group of people I don't know plan to make a decision on whether my Dad is allowed to go back to his home or not. But I guess they're working to protect everyone's best interest. In this world of lawyers I'm guessing liability concerns would prevent the "committee" from ever recommending that someone could leave.
My Mom is playing it nice though, following the rules and guidelines. Let them do their thing because he is coming home regardless.
And one of my main goals of the day? I'm making gumbo, really good shrimp and andouille gumbo! Why of course I have okra!
Friday, October 16, 2009
Now What?
I always assumed that if I ran the gamut of available chemos I could go back to the beginning and start the circle of chemos all over again. But my oncologist will have none of that.
It's left me scratching my head and a bit confused.
He himself told me that it was a possible option, although he never committed to the idea. The kidney cancer specialist in Philadelphia also agreed it was a possibility.
Now what?
Speaking of the specialist in Philadelphia - he's gone. My oncologist learned that he accepted a strictly academic job at a big university somewhere. What gets me though, is that my oncologist just set-up an appointment for me at the University of Pennsylvania with no knowledge of who he might be sending me too.
Yesterday morning a doctor's secretary at Penn called me and scheduled an appointment. Then late yesterday afternoon the same lady called me to tell me the doctor did not feel experienced enough "to handle my diagnosis."
So, let's review. My oncologist blindly tried to send me to a doctor at Penn who is not very experienced?
(Banging head on table.)
Now what?
I know that if I am not on some type of chemo my cancer can be quite aggressive. I do feel it's significant to find somebody who is willing to put me on something, and fairly quickly.
Currently I do have injections of Interferon three times a week. But that is not a chemo. It is something that enhances the immune system, boosting the immune system up enough to rid the body of anything, including cancer, that doesn't belong there.
I think...I think...that my oncologist is convinced that revolving back to the first chemo I took years ago will not work, and he doesn't want to punish me with chemo side-effects with no results. But I'm not sure there is enough evidence to completely support that.
From my perspective, there's more harm in not trying, not taking that risk.
My oncologist is busier and busier and busier recently since he is also the director of the cancer center at Lancaster General. The word is that he's at a conference somewhere in Canada and turned his cell phone off. Not even the staff has been able to reach him.
So now what?
Well I've been debating my options and trying to decide what to do next.
I could...
...call my oncologist and beg and plead with him to give Nexavar (the first chemo I took) a chance.
...meet with my family doctor for his perspective and opinion, hoping that he may be able to refer me to an amazing kidney cancer specialist.
...travel to a leading cancer center like Sloan Kettering in New York City, or John Hopkins in Washington, D.C.
I've got some big decisions to make.
I am still a big, goof ball though. I am still smiling. My spirits are still high. I find no value you in negative emotions like being depressed or sad. I have no time or energy for that. It would be selfish and of no value.
(BIG HUG to everyone out there!)
It's left me scratching my head and a bit confused.
He himself told me that it was a possible option, although he never committed to the idea. The kidney cancer specialist in Philadelphia also agreed it was a possibility.
Now what?
Speaking of the specialist in Philadelphia - he's gone. My oncologist learned that he accepted a strictly academic job at a big university somewhere. What gets me though, is that my oncologist just set-up an appointment for me at the University of Pennsylvania with no knowledge of who he might be sending me too.
Yesterday morning a doctor's secretary at Penn called me and scheduled an appointment. Then late yesterday afternoon the same lady called me to tell me the doctor did not feel experienced enough "to handle my diagnosis."
So, let's review. My oncologist blindly tried to send me to a doctor at Penn who is not very experienced?
(Banging head on table.)
Now what?
I know that if I am not on some type of chemo my cancer can be quite aggressive. I do feel it's significant to find somebody who is willing to put me on something, and fairly quickly.
Currently I do have injections of Interferon three times a week. But that is not a chemo. It is something that enhances the immune system, boosting the immune system up enough to rid the body of anything, including cancer, that doesn't belong there.
I think...I think...that my oncologist is convinced that revolving back to the first chemo I took years ago will not work, and he doesn't want to punish me with chemo side-effects with no results. But I'm not sure there is enough evidence to completely support that.
From my perspective, there's more harm in not trying, not taking that risk.
My oncologist is busier and busier and busier recently since he is also the director of the cancer center at Lancaster General. The word is that he's at a conference somewhere in Canada and turned his cell phone off. Not even the staff has been able to reach him.
So now what?
Well I've been debating my options and trying to decide what to do next.
I could...
...call my oncologist and beg and plead with him to give Nexavar (the first chemo I took) a chance.
...meet with my family doctor for his perspective and opinion, hoping that he may be able to refer me to an amazing kidney cancer specialist.
...travel to a leading cancer center like Sloan Kettering in New York City, or John Hopkins in Washington, D.C.
I've got some big decisions to make.
I am still a big, goof ball though. I am still smiling. My spirits are still high. I find no value you in negative emotions like being depressed or sad. I have no time or energy for that. It would be selfish and of no value.
(BIG HUG to everyone out there!)
Thursday, October 15, 2009
Second Opinion
Hopefully the Phillies will still be playing by next Friday. Friday we'll be in Philly hoping to hit a big homerun.
The appointment with the specialist at the University of Pennsylvania has been set. We're keeping our fingers crossed that he may have greater access to new therapies for kidney cancer, or possibly access to a clinical trial, or something. The cancer center at U of P is a big dog in the medical world of cancer. We'll know next Friday.
There is basically four chemotherapies currently available for kidney cancer. All are fairly similar in make-up, and in how they work. Once the first chemo became available, many other drug companies tried to jump on the bandwagon. There is a lot of money to be made in cancer care. These mediciations alone cost $5,000 to $8,000 a month.
I've been trying to get into my oncologist's head and figure out what he is thinking. I believe that he feels that I've been on all four available chemos and yet I'm still pretty messed up. I think that he feels if he started me on one of the chemos again that was previously used that we'd see little or no benefits while the side-effects of the chemo contiue to beat me up.
The oncologist has often talked about his responsibility to attack my cancer but also to protect the quality of my life. So, crawliing around his brain a little, I'm trying to sort out his decision process.
But I am a fighter. I have put myself through a lot to even make it this far. I have a difficult time accepting his decision to just stop treatments. I just keep thinking, what great harm could really come from trying Nexavar again? It was the first chemo I was put on and I got 14-months out of it before it stopped working.
The doc hasn't completely given up. He did start me on Interferon which is not a chemo but a strong immune system booster. It strengthens and convinces your own immune system into ridding the body of everything that doesn't belong there. He told Barb and I that he's seen it completely clear-up a lung cancer patient whose lungs were filled with tumors. But he added that it really only works about 15-percent of the time.
I am still having radiation treatments to my upper spine where cancer has invaded one of my vertabrae. I also am likely to be scheduled for another Gamma Knife to remove two very small growths in my brain.
In the meantime, we're looking, we're asking, we're researching, we're fighting. Let's go!
The appointment with the specialist at the University of Pennsylvania has been set. We're keeping our fingers crossed that he may have greater access to new therapies for kidney cancer, or possibly access to a clinical trial, or something. The cancer center at U of P is a big dog in the medical world of cancer. We'll know next Friday.
There is basically four chemotherapies currently available for kidney cancer. All are fairly similar in make-up, and in how they work. Once the first chemo became available, many other drug companies tried to jump on the bandwagon. There is a lot of money to be made in cancer care. These mediciations alone cost $5,000 to $8,000 a month.
I've been trying to get into my oncologist's head and figure out what he is thinking. I believe that he feels that I've been on all four available chemos and yet I'm still pretty messed up. I think that he feels if he started me on one of the chemos again that was previously used that we'd see little or no benefits while the side-effects of the chemo contiue to beat me up.
The oncologist has often talked about his responsibility to attack my cancer but also to protect the quality of my life. So, crawliing around his brain a little, I'm trying to sort out his decision process.
But I am a fighter. I have put myself through a lot to even make it this far. I have a difficult time accepting his decision to just stop treatments. I just keep thinking, what great harm could really come from trying Nexavar again? It was the first chemo I was put on and I got 14-months out of it before it stopped working.
The doc hasn't completely given up. He did start me on Interferon which is not a chemo but a strong immune system booster. It strengthens and convinces your own immune system into ridding the body of everything that doesn't belong there. He told Barb and I that he's seen it completely clear-up a lung cancer patient whose lungs were filled with tumors. But he added that it really only works about 15-percent of the time.
I am still having radiation treatments to my upper spine where cancer has invaded one of my vertabrae. I also am likely to be scheduled for another Gamma Knife to remove two very small growths in my brain.
In the meantime, we're looking, we're asking, we're researching, we're fighting. Let's go!
Wednesday, October 14, 2009
Kind of Rough Day
I always go into appointments with my oncologist with a plan. Problem is, my oncologist always goes into an appointment with me with a plan as well. We really should share a synopsis of our plans with one another before we meet.
I was a little surprised, and a little confused by the oncologist's plan. He rationalized that the cancer was wide spread, and the last chemo had not worked at all, and there was no new chemo available. I had already been on all four types of chemo that are available.
"Are we giving up?" I asked him.
"No, no Jim," he fired back, "I am not giving up on you."
Whew.
My cancer is very advanced and very wide-spread. It is a terminal cancer without a cure - as of yet. It is in the brain, both lungs, in a few bones, in a few organs. It's everywhere. I could tell the doctor was rationalizing that with such wide-spread cancer, and no chemos really being able to control this monster completely, or new ones available, that it might be time for him to concentrate on caring for the problems that may arise from this systematic disease rather than the disease itself.
This still sounded like giving up to me.
But then the doc started revealing his plan from here. He wanted to start me on Interferon, a drug that is used in many cancers, to help boost the immune system so the body itself starts to attack the cancer. The Interferon will be administered by injection, three times a week.
He wants to meet again in three-weeks and then have more scans done in six-weeks to see if the Interferon has done anything at all.
In the meantime, he's sending me down to meet a kidney cancer specialist at the University of Pennsylvania. This will not only be a second opinion but a connection with a doctor who is closer to the newest drugs, and the possibility of entering a clinical trial.
In the meantime, Barb and I have decided that I should start taking a natural supplement called Milk Thistle. It's a Mediterranean flower that has been used very successfully to heal and protect the liver. There is some evidence that it offers benefits beyond that as well. My Mom's doctor strongly recommended it, and said that it had helped his own father.
I do plan to get back to the Gamma Knife once again when my current radiation treatments conclude.
The first night after my first Interferon injection I did feel some of the side-effects. The side effects are mainly flu-like symptons. Last night some of those set in and I felt extreme chills, headaches, and eventually became sick to my stomach. They were all advertised side-effects.
So we didn't expect a lot of what the oncologist ended up discussing with us. That has become par for the course. No matter how well I try to prepare myself, I'm still walking away a little confused, trying to absorb everything that was said. I'd love to be able to have some time the day after an appointment for questions and responses.
Well, I do have his cell phone number...
I was a little surprised, and a little confused by the oncologist's plan. He rationalized that the cancer was wide spread, and the last chemo had not worked at all, and there was no new chemo available. I had already been on all four types of chemo that are available.
"Are we giving up?" I asked him.
"No, no Jim," he fired back, "I am not giving up on you."
Whew.
My cancer is very advanced and very wide-spread. It is a terminal cancer without a cure - as of yet. It is in the brain, both lungs, in a few bones, in a few organs. It's everywhere. I could tell the doctor was rationalizing that with such wide-spread cancer, and no chemos really being able to control this monster completely, or new ones available, that it might be time for him to concentrate on caring for the problems that may arise from this systematic disease rather than the disease itself.
This still sounded like giving up to me.
But then the doc started revealing his plan from here. He wanted to start me on Interferon, a drug that is used in many cancers, to help boost the immune system so the body itself starts to attack the cancer. The Interferon will be administered by injection, three times a week.
He wants to meet again in three-weeks and then have more scans done in six-weeks to see if the Interferon has done anything at all.
In the meantime, he's sending me down to meet a kidney cancer specialist at the University of Pennsylvania. This will not only be a second opinion but a connection with a doctor who is closer to the newest drugs, and the possibility of entering a clinical trial.
In the meantime, Barb and I have decided that I should start taking a natural supplement called Milk Thistle. It's a Mediterranean flower that has been used very successfully to heal and protect the liver. There is some evidence that it offers benefits beyond that as well. My Mom's doctor strongly recommended it, and said that it had helped his own father.
I do plan to get back to the Gamma Knife once again when my current radiation treatments conclude.
The first night after my first Interferon injection I did feel some of the side-effects. The side effects are mainly flu-like symptons. Last night some of those set in and I felt extreme chills, headaches, and eventually became sick to my stomach. They were all advertised side-effects.
So we didn't expect a lot of what the oncologist ended up discussing with us. That has become par for the course. No matter how well I try to prepare myself, I'm still walking away a little confused, trying to absorb everything that was said. I'd love to be able to have some time the day after an appointment for questions and responses.
Well, I do have his cell phone number...
Tuesday, October 13, 2009
Groan
Today will be a big day. Barb and I will meet with the big boss doc who will make the decisions on how we proceed from here.
The test results from last week were not great. But I have to admit that I wasn't surprised by them.
There are two new small (two millimeter) spots in the brain. I expected this. Once cancer passes the blood-brain barrier and seeds in the brain it's a tough, virtually impossible fight. All we can do is try to keep catching new lesions when they are small and treat them with the Gamma Knife (high dose radiation).
Plans are being set for the Gamma Knife now.
I don't know why, but for some reason I just didn't feel like my current chemo was working. That does appear to be the case. I'm confident that the oncologist will agree with my naive analysis when we meet today and I'm expecting he has developed a new plan for chemo moving ahead.
I've typed out a page-and-a-half of discussion points and questions to review with the big boss doc today. Some days he is more pushed for time than others. I hope he has the time today. I'm going to skip the normal "How are yous?" and jump right into things - at least that's the plan.
I am scheduled for a chemo treatment today. But if the doc does decide that this chemo is not working he will cancel that.
Whether I go through chemo today, or I don't, we're going to try to sneak in for my daily radiation treatment earlier than scheduled. They understood and allowed that Friday. So I'm hoping for that kindness and understanding again. Sometimes it's just a matter of what nurse you talk to, and what kind of mood they are in.
A big thank you RL Mom for getting us in there and through these events today!
The test results from last week were not great. But I have to admit that I wasn't surprised by them.
There are two new small (two millimeter) spots in the brain. I expected this. Once cancer passes the blood-brain barrier and seeds in the brain it's a tough, virtually impossible fight. All we can do is try to keep catching new lesions when they are small and treat them with the Gamma Knife (high dose radiation).
Plans are being set for the Gamma Knife now.
I don't know why, but for some reason I just didn't feel like my current chemo was working. That does appear to be the case. I'm confident that the oncologist will agree with my naive analysis when we meet today and I'm expecting he has developed a new plan for chemo moving ahead.
I've typed out a page-and-a-half of discussion points and questions to review with the big boss doc today. Some days he is more pushed for time than others. I hope he has the time today. I'm going to skip the normal "How are yous?" and jump right into things - at least that's the plan.
I am scheduled for a chemo treatment today. But if the doc does decide that this chemo is not working he will cancel that.
Whether I go through chemo today, or I don't, we're going to try to sneak in for my daily radiation treatment earlier than scheduled. They understood and allowed that Friday. So I'm hoping for that kindness and understanding again. Sometimes it's just a matter of what nurse you talk to, and what kind of mood they are in.
A big thank you RL Mom for getting us in there and through these events today!
Monday, October 12, 2009
The Roller Coaster
Sometimes I feel like my body is Disneyland and cancer is planning on going on all the rides.
Saturday morning was incredible. After three radiation treatments last week I woke up Saturday and there was no pain, none anywhere to be found. I couldn't believe it. I hadn't felt like that for weeks and weeks and weeks.
I also had a dry patch developing on the back of my throat. It was sore and often would hurt when I swallowed. But Saturday morning that was completely gone too! I was amazed. I could only conclude that the radiation treatments were working.
There was a down side. Isn't there always? The radiation did seem to be upsetting my belly a bit. I had not become physically sick. But it was enough to really lower my appetite in general. So my eating now is not what it should be. But Barb is working hard to present me with good food that's hard to resist.
Today I begin my fourth radiation treatment and then meet with the radiation/oncologist. I'm sure he'll share my brain MRI results with Barb and I from last Wednesday. I've told Barb that I'm approaching those results anticipating that there will be more tumors found in the brain, but hoping (crossing fingers) that none will be spotted. It's just the nature of the beast. Once cancer lands in the brain it is almost impossible to eradicate it. But my doc has assured me that we can continue to chase it around in the brain with radiation. Here's hoping for the best though.
Tomorrow will be a full day, with frankly too much going on in just one day. Barb and I will meet with my oncologist and review the CT scan of my chest, pelvis and abdomen last week. I've prepared a pretty big list of questions for him. I hope he has the time to bear with me and discuss them all. It's important.
After that I'm heading straight to chemotherapy. Then later in the day I have another radiation treatment. With all the fatigue I've been dealing with it will be a lot to handle.
After Tuesday all the tests should be concluded for awhile and marching orders from there should be established.
Maybe I'll nap most of Wednesday and just watch Sponge Bob.
Saturday morning was incredible. After three radiation treatments last week I woke up Saturday and there was no pain, none anywhere to be found. I couldn't believe it. I hadn't felt like that for weeks and weeks and weeks.
I also had a dry patch developing on the back of my throat. It was sore and often would hurt when I swallowed. But Saturday morning that was completely gone too! I was amazed. I could only conclude that the radiation treatments were working.
There was a down side. Isn't there always? The radiation did seem to be upsetting my belly a bit. I had not become physically sick. But it was enough to really lower my appetite in general. So my eating now is not what it should be. But Barb is working hard to present me with good food that's hard to resist.
Today I begin my fourth radiation treatment and then meet with the radiation/oncologist. I'm sure he'll share my brain MRI results with Barb and I from last Wednesday. I've told Barb that I'm approaching those results anticipating that there will be more tumors found in the brain, but hoping (crossing fingers) that none will be spotted. It's just the nature of the beast. Once cancer lands in the brain it is almost impossible to eradicate it. But my doc has assured me that we can continue to chase it around in the brain with radiation. Here's hoping for the best though.
Tomorrow will be a full day, with frankly too much going on in just one day. Barb and I will meet with my oncologist and review the CT scan of my chest, pelvis and abdomen last week. I've prepared a pretty big list of questions for him. I hope he has the time to bear with me and discuss them all. It's important.
After that I'm heading straight to chemotherapy. Then later in the day I have another radiation treatment. With all the fatigue I've been dealing with it will be a lot to handle.
After Tuesday all the tests should be concluded for awhile and marching orders from there should be established.
Maybe I'll nap most of Wednesday and just watch Sponge Bob.
Saturday, October 10, 2009
Even Steven
We all realize that life is a delicate balance. We have good days. We have bad days. We have days where everything we tough turns to gold. And we have days where everything we tough turns to mud.
Last week was a very busy week filled with plenty of peaks and valleys. There was a consult with the radiation/oncologist to discuss radiation treatments to my cervical spine. There was planning and simulations of that radiation procedure. There was a brain MRI. There was laboratory work. There was a CT scan of the chest, abdomen and pelvis. Beginning Tuesday there was daily radiation treatments. It was one of the busiest weeks I've experienced.
On top of all of this I've been shuffling around like a zombie as a result of all the medications that I am on.
Some days were very rough on me.
My philosophy entering the week was that I have a very heavy weight to carry up a very steep hill but I was going to buckle down, not complain about it (well maybe a little) and get it done. If anyone came along and asked me if they could help me carry some of the weight I wasn't going to be stupid and turn that kind offer down. But I was ready to take it all on if I had to.
Barb has always been my angel through this journey. She does everything and anything to ease my burden. I couldn't possibly list how many times she's propped me up and held the ship together. Thanks Barbie!
Barb's Mom Susan immediately came forward early this week and asked how she could help. I didn't want to intrude on Susan's life and just let her know that I appreciate her offer and will humbly accept any offers to help. Susan drove us to our medical events three times this week. She certainly took a huge load of the weight off of my back. Thanks Susan!
One of the big problems of this week was having appointments early in the morning and late in the afternoon on the same day. This was stretching me thin.
When we received our radiation treatment schedule on Tuesday we explained this concern to the nurse. But she explained to us that the doctor was quite serious about starting these treatments right away.
She did tell us though that Friday after our CT scan we shouldn't go home but come to the radiation/oncology department, put on our best sad puppy faces, and explain our dilemna.
As I mentioned some days everything goes right, and sometimes, well, ugh...
Friday was unbelievable, incredible really. Susan drove Barb and I into the health campus, about 20-minutes east of Marietta, for my CT scan. I've had many CT scans here through the past few years and there has always been at least a 30-minute wait just to get called back.
Yesterday, unexplicably, there was no one there but me. As soon as I got there they took me back, straight into the scanning room, positioned me on the table, and in a couple minutes it was done.
I walked out stunned, happily stunned. I walked out to the waiting area and saw Barb walking toward the waiting area from another direction, both of us heading toward her Mom.
"Did you have any luck with your sad puppy face?" I asked Barb.
"Yep. We're supposed to go right down there when you're done," she answered.
This was big. This was huge. I could get everything done without having to go home, hang out, take a nap, and then return by 4 p.m. Radiation treatment went smooth, especially considering that one of their machines were down. We were home, and done for the day, by around 10 a.m.
That's a big week in the book.
We're going to have to make use of Barb's powerful sad puppy face in the future, but only for good and never for evil. Maybe she could teach me that face too!
Last week was a very busy week filled with plenty of peaks and valleys. There was a consult with the radiation/oncologist to discuss radiation treatments to my cervical spine. There was planning and simulations of that radiation procedure. There was a brain MRI. There was laboratory work. There was a CT scan of the chest, abdomen and pelvis. Beginning Tuesday there was daily radiation treatments. It was one of the busiest weeks I've experienced.
On top of all of this I've been shuffling around like a zombie as a result of all the medications that I am on.
Some days were very rough on me.
My philosophy entering the week was that I have a very heavy weight to carry up a very steep hill but I was going to buckle down, not complain about it (well maybe a little) and get it done. If anyone came along and asked me if they could help me carry some of the weight I wasn't going to be stupid and turn that kind offer down. But I was ready to take it all on if I had to.
Barb has always been my angel through this journey. She does everything and anything to ease my burden. I couldn't possibly list how many times she's propped me up and held the ship together. Thanks Barbie!
Barb's Mom Susan immediately came forward early this week and asked how she could help. I didn't want to intrude on Susan's life and just let her know that I appreciate her offer and will humbly accept any offers to help. Susan drove us to our medical events three times this week. She certainly took a huge load of the weight off of my back. Thanks Susan!
One of the big problems of this week was having appointments early in the morning and late in the afternoon on the same day. This was stretching me thin.
When we received our radiation treatment schedule on Tuesday we explained this concern to the nurse. But she explained to us that the doctor was quite serious about starting these treatments right away.
She did tell us though that Friday after our CT scan we shouldn't go home but come to the radiation/oncology department, put on our best sad puppy faces, and explain our dilemna.
As I mentioned some days everything goes right, and sometimes, well, ugh...
Friday was unbelievable, incredible really. Susan drove Barb and I into the health campus, about 20-minutes east of Marietta, for my CT scan. I've had many CT scans here through the past few years and there has always been at least a 30-minute wait just to get called back.
Yesterday, unexplicably, there was no one there but me. As soon as I got there they took me back, straight into the scanning room, positioned me on the table, and in a couple minutes it was done.
I walked out stunned, happily stunned. I walked out to the waiting area and saw Barb walking toward the waiting area from another direction, both of us heading toward her Mom.
"Did you have any luck with your sad puppy face?" I asked Barb.
"Yep. We're supposed to go right down there when you're done," she answered.
This was big. This was huge. I could get everything done without having to go home, hang out, take a nap, and then return by 4 p.m. Radiation treatment went smooth, especially considering that one of their machines were down. We were home, and done for the day, by around 10 a.m.
That's a big week in the book.
We're going to have to make use of Barb's powerful sad puppy face in the future, but only for good and never for evil. Maybe she could teach me that face too!
Thursday, October 8, 2009
Ugh - Never a Dull Moment
I woke up this morning feeling like Freckles had slept on my head all night. Or maybe I was out partying all night and just don't remember it.
Regardless, I'm shaking off the sleepy dust and trying to pull it back together.
It's all good. I mean I've certainly been worse off before. But that's kind of an odd contest to have with myself, so I'll just say this week has been a little tough but I'm hanging in there.
Yesterday morning Barb and I ran up to "Norlanco" which is a little medical center between Elizabethtown and Mt. Joy. Lancaster General Hospital, which is owned by the residents of Lancaster County, has been buying up just about every medical operation in the county. Norlanco is one of their many tentacles.
Norlanco is convenient because it is only about a 10-minute drive from us, and we can access it driving only rural, country roads. I had to have bloodwork and a urinalysis done.
I was previously given a cup and stuff for me to fill at home before coming in for my appointment. I appreciate that flexibility. But I'll never get used to carrying a cup of pee around with me.
They took a couple of viles of blood for several different tests: blood cell counts; liver and kidney conditions; medicine levels, etc. The lab tech who typically takes my blood now is very slick and always gets me on the first stick. But I do remember when she first started a year-or-so ago. Oh my she'd stick me over and over and over until she found a gusher.
After the lab work we walked to the other end of the med center for my brain MRI. I don't understand why the MRI is so noisy. I've asked. No one else seems to know that I've asked. Once I was told by a tech that it waa because the MRI had gigantic magnets that rapidly collided against one another. (shrugging shoulders)
But it is awful noisy. I have to lie perfectly still for around an hour while the magnets make it sound and feel like there is an earthquake going on around my head.
I used to wake up, hit the shower, and I was out the door. But since cancer came to town I need a little time to wake up. Since Barb has always needed some time to wake up we set the alarm for four a.m. So by the time we got back from the MRI I was already pretty spent and just kicked back and relaxed.
Until late in the afternoon when we had to take off for the Lancaster General Health Campus for my first radiation treatment to my upper spine. I had taken a necessary nap and the trip went well. Radiation was about 30-minutes behind schedule. But once they got me in it took longer to set me up in the exact position, laying on my belly without my shirt and with my hands above my head, then it took for the actual radiation treatment.
The stretch for the day yesterday was definitely having two different things happening at both ends of the day, early in the morning and late in the afternoon.
Today we only have to get in for a mid-afternoon radiation treatment. I'll be timing out my nap and my pain pills to pull that off without a hitch.
Never a dull moment around here!
Regardless, I'm shaking off the sleepy dust and trying to pull it back together.
It's all good. I mean I've certainly been worse off before. But that's kind of an odd contest to have with myself, so I'll just say this week has been a little tough but I'm hanging in there.
Yesterday morning Barb and I ran up to "Norlanco" which is a little medical center between Elizabethtown and Mt. Joy. Lancaster General Hospital, which is owned by the residents of Lancaster County, has been buying up just about every medical operation in the county. Norlanco is one of their many tentacles.
Norlanco is convenient because it is only about a 10-minute drive from us, and we can access it driving only rural, country roads. I had to have bloodwork and a urinalysis done.
I was previously given a cup and stuff for me to fill at home before coming in for my appointment. I appreciate that flexibility. But I'll never get used to carrying a cup of pee around with me.
They took a couple of viles of blood for several different tests: blood cell counts; liver and kidney conditions; medicine levels, etc. The lab tech who typically takes my blood now is very slick and always gets me on the first stick. But I do remember when she first started a year-or-so ago. Oh my she'd stick me over and over and over until she found a gusher.
After the lab work we walked to the other end of the med center for my brain MRI. I don't understand why the MRI is so noisy. I've asked. No one else seems to know that I've asked. Once I was told by a tech that it waa because the MRI had gigantic magnets that rapidly collided against one another. (shrugging shoulders)
But it is awful noisy. I have to lie perfectly still for around an hour while the magnets make it sound and feel like there is an earthquake going on around my head.
I used to wake up, hit the shower, and I was out the door. But since cancer came to town I need a little time to wake up. Since Barb has always needed some time to wake up we set the alarm for four a.m. So by the time we got back from the MRI I was already pretty spent and just kicked back and relaxed.
Until late in the afternoon when we had to take off for the Lancaster General Health Campus for my first radiation treatment to my upper spine. I had taken a necessary nap and the trip went well. Radiation was about 30-minutes behind schedule. But once they got me in it took longer to set me up in the exact position, laying on my belly without my shirt and with my hands above my head, then it took for the actual radiation treatment.
The stretch for the day yesterday was definitely having two different things happening at both ends of the day, early in the morning and late in the afternoon.
Today we only have to get in for a mid-afternoon radiation treatment. I'll be timing out my nap and my pain pills to pull that off without a hitch.
Never a dull moment around here!
Wednesday, October 7, 2009
When it Rains it Pours
First I really need to thank Susan, Barb's Mom, for transporting me to appointments not just yesterday, but today as well. Thank you. Thank you. Thank you.
I can never thank Barb enough for going to all of these appointments with me, sacrificing herself and her time. She's truly been my partner through this tough journey and just gives and gives and gives.
Yesterday Barb and I met with the radiation oncologist who was eager to start radiation treatments right away to one vertabrae in the cervical spine. The cervical spine is higher up the spine between the upper shoulder blades.
Since this area wasn't diagnosed very quickly (at first we thought it was strained muscles, then a rotator cuff strain, then a pinched nerve) the doc didn't want it to last any longer. If let to continue it could jeopardize the stability of that vertabrae and collapse, creating REAL problems.
That's all I needed to hear. I thought the current problems were real enough.
I was hoping for a brand new style of radiation treatment, a new machine called tomotherapy, that delivers one high dose of radiation directly at the cancer with little harm to adjacent cells. But the doc felt better about the older style of radiation which delivers lower doses of radiation over a period of weeks. Since this area was so close to the spinal cord itself, he wanted to be very cautious. I had to sign a paper stating that this procedure could causes paralysis. But the nurse told me that has never happened in her seven-years there.
So now I have to go in for radiation everyday for at least 10-days. But the doctor is reserving the right to extend that to 15-days if he deems necessary.
This is also coincidentally "scan week." I have an MRI of the head this morning, plus bloodwork. Then I have a CT of the chest, abdomen and pelvis on Friday. Everyday of course will also include a radiation treatment beginning this afternoon.
So for the next few weeks I'll probably be spending just as much time at the medical facilities as I will at home.
Whew!
The fight continues. We are up for it!
I can never thank Barb enough for going to all of these appointments with me, sacrificing herself and her time. She's truly been my partner through this tough journey and just gives and gives and gives.
Yesterday Barb and I met with the radiation oncologist who was eager to start radiation treatments right away to one vertabrae in the cervical spine. The cervical spine is higher up the spine between the upper shoulder blades.
Since this area wasn't diagnosed very quickly (at first we thought it was strained muscles, then a rotator cuff strain, then a pinched nerve) the doc didn't want it to last any longer. If let to continue it could jeopardize the stability of that vertabrae and collapse, creating REAL problems.
That's all I needed to hear. I thought the current problems were real enough.
I was hoping for a brand new style of radiation treatment, a new machine called tomotherapy, that delivers one high dose of radiation directly at the cancer with little harm to adjacent cells. But the doc felt better about the older style of radiation which delivers lower doses of radiation over a period of weeks. Since this area was so close to the spinal cord itself, he wanted to be very cautious. I had to sign a paper stating that this procedure could causes paralysis. But the nurse told me that has never happened in her seven-years there.
So now I have to go in for radiation everyday for at least 10-days. But the doctor is reserving the right to extend that to 15-days if he deems necessary.
This is also coincidentally "scan week." I have an MRI of the head this morning, plus bloodwork. Then I have a CT of the chest, abdomen and pelvis on Friday. Everyday of course will also include a radiation treatment beginning this afternoon.
So for the next few weeks I'll probably be spending just as much time at the medical facilities as I will at home.
Whew!
The fight continues. We are up for it!
Monday, October 5, 2009
A Dedication to Grandma Grim
Yesterday, Sunday, October 4th, 2009 was even made more clear to me (even more so) how important she was in so many lives. A bench was dedicated in her honor just outside the New Bridgeville firehall. She has had such an impact on so many lives and in my opinion, this was a way she once again managed to bring her family together, which does not happen often enough.
One thing I definitely remember, is that she cooked all the time, it seemed as though everytime you were there, that is what she was doing. As kids we spent alot of time there, especially it seems during baseball season, since the field was so close by. But then again, we spent a ton of time with both sets of grandparents.
I know I mentioned yesterday that clearly all of Grandma's children, Aunt Joanne, Aunt Brenda, Dad, Uncle Rodney, and Uncle Mike, have all picked up Grandma's traits. Grandma was the type of person that never had an unkind thing to say about anyone. We all love her and miss her a great deal and I could go on and on, but I'm not going to.
She will forever be in our hearts.
One thing I definitely remember, is that she cooked all the time, it seemed as though everytime you were there, that is what she was doing. As kids we spent alot of time there, especially it seems during baseball season, since the field was so close by. But then again, we spent a ton of time with both sets of grandparents.
I know I mentioned yesterday that clearly all of Grandma's children, Aunt Joanne, Aunt Brenda, Dad, Uncle Rodney, and Uncle Mike, have all picked up Grandma's traits. Grandma was the type of person that never had an unkind thing to say about anyone. We all love her and miss her a great deal and I could go on and on, but I'm not going to.
She will forever be in our hearts.
Saturday, October 3, 2009
Goodbye Tough Guy
I broke down and turned on the furnace yesterday morning. It was in the forties. As the day brought the temperatures back into the sixties I turned the furnace back down.
In this old house the furnace cannot go on without the storm windows being pulled. The old windows are very drafty. So I hustled around the house to close all but two, since I knew there would be a day or three yet when we would want a couple open windows and some fresh air.
In the past I would never turn the furnace on this early. I mean it's only October. In the past I would be a tough guy, who was also trying to save money. I would just say to myself that I could pull a sweatshirt on and be just fine. Just add another layer and don't touch the thermostat at least until Thanksgiving.
But yesterday I found myself saying, "Why should I be uncomfortable in my own home?" For the first time I found myself looking after my own comfort rather than trying to be some macho dude that could handle this change in the seasons.
Since cancer came to town it has been a big goodbye to the tough guy.
Chemotherapy, and kind of chemotherapy, is a strong, strong drug. In my situation it is even tougher because I have been taking it for almost four-years. Few cancer patients are on chemo for that length of time.
Chemo is a poison to the cancer...but it is also a poison to your body. Over time I have felt how the chemo has stripped me down. All those layers my body used to have to help me be a tough guy are now gone.
I've always been pretty thick-skinned, both literally and figuretively. No more. Now my skin is very sensitive and will get sore quite easily. Now my mind is more sensitive and I'm spooked by someone sneaking up on me, which would never happen before.
In many ways this isn't such a terrible thing. Being sensitive to my surroundings, objects, the weather, the taste of food, opens my eyes to a world that the rhino that I was never experienced.
There's always a bright side. It's all in how you choose to look at things.
Today is pretty relaxing. I have gotten two great leads to a literary agent and a book publisher from an old friend from Philly. This gives me even more inspiation to get this book thing together. I will try to work that today.
I keep doing stretches and exercises to try to get my body back together after a tough month or so.
Next week will be a busy one. I have to go for bloodwork on Monday. On Tuesday I'll meet with the radiation/oncologist to discuss radiaton treatment plans and then they'll execute a simulation of the treatment in preparation. We should get our schedule then for when we'll proceed with that.
Wednesday is a follow-up MRI of the brain. Friday is a follow-up CT scan of the chest, pelvis and abdomen. The oncologist had ordered another PET/CT scan but my insurance company firmly denied it.
Off and running, go Penn State, go Phillies, go Newcastle United. It's sports Saturday.
In this old house the furnace cannot go on without the storm windows being pulled. The old windows are very drafty. So I hustled around the house to close all but two, since I knew there would be a day or three yet when we would want a couple open windows and some fresh air.
In the past I would never turn the furnace on this early. I mean it's only October. In the past I would be a tough guy, who was also trying to save money. I would just say to myself that I could pull a sweatshirt on and be just fine. Just add another layer and don't touch the thermostat at least until Thanksgiving.
But yesterday I found myself saying, "Why should I be uncomfortable in my own home?" For the first time I found myself looking after my own comfort rather than trying to be some macho dude that could handle this change in the seasons.
Since cancer came to town it has been a big goodbye to the tough guy.
Chemotherapy, and kind of chemotherapy, is a strong, strong drug. In my situation it is even tougher because I have been taking it for almost four-years. Few cancer patients are on chemo for that length of time.
Chemo is a poison to the cancer...but it is also a poison to your body. Over time I have felt how the chemo has stripped me down. All those layers my body used to have to help me be a tough guy are now gone.
I've always been pretty thick-skinned, both literally and figuretively. No more. Now my skin is very sensitive and will get sore quite easily. Now my mind is more sensitive and I'm spooked by someone sneaking up on me, which would never happen before.
In many ways this isn't such a terrible thing. Being sensitive to my surroundings, objects, the weather, the taste of food, opens my eyes to a world that the rhino that I was never experienced.
There's always a bright side. It's all in how you choose to look at things.
Today is pretty relaxing. I have gotten two great leads to a literary agent and a book publisher from an old friend from Philly. This gives me even more inspiation to get this book thing together. I will try to work that today.
I keep doing stretches and exercises to try to get my body back together after a tough month or so.
Next week will be a busy one. I have to go for bloodwork on Monday. On Tuesday I'll meet with the radiation/oncologist to discuss radiaton treatment plans and then they'll execute a simulation of the treatment in preparation. We should get our schedule then for when we'll proceed with that.
Wednesday is a follow-up MRI of the brain. Friday is a follow-up CT scan of the chest, pelvis and abdomen. The oncologist had ordered another PET/CT scan but my insurance company firmly denied it.
Off and running, go Penn State, go Phillies, go Newcastle United. It's sports Saturday.
Friday, October 2, 2009
Join the Party
Pennsylvania is now 94-days late passing a budget. It is the only state in the nation without an approved budget.
I can't remember in any other scenario something being so difficult to come to conclusion.
As one state resident said, "I wonder how they'll feel when we pay our state taxes 94-days late?"
I have a feeling that they won't be as patient as they expect us to be.
Every morning in the news for the past few weeks there has been a story on someone who is suffering because of the lack of a budget. For the most part these are libraries, schools, and non-profits that provide valuable social products to communities across the state. There are people being laid off. There are places just closing down.
This system just isn't working. It all comes down to party politics. What we hear and read in the news isn't how Representative Joe Smith feels, or how Senator Bob Soandso feels, or God forbid how the citizens of Pennsylvania feels. All we hear is that the Republicans won't vote for this or the Democrats won't vote for that.
Within each party there are leaders. When you are voted to office for the first time your office is in a cold, dark corner of the basement. You have to "earn" your way up the party ladder by kissing the right butts and blindly supporting the interests of the top few people who run the party.
So the architecture of our government all comes down to a few men and women who represent only two interest groups, Republican and Democrat.
Our budget would be done if it just came down to a popular vote, whether that popular vote be among all state lawmakers, or the entire population.
And let's face it, a marriage is a group of two interests and for success there must be a give and take. You can't just argue about it for 94-plus days. That could lead to divorce. Maybe our lawmakers should just divorce themselves from their positions? Or their parties?
I don't know.
I tried to look up what benefits state employees receive. I've always heard people talk about how great it is to land a state job because the benefits are so excellent. I found a great site packed full of information, but it was so complex and involved so many different scenarios that you'd have to be an attorney with a week on your hands to be able to sit down and figure it out.
We're too complex.
I used to have a theory that Alyssa purposely kept her room incredibly messy so I couldn't find anything in there - ummm - incriminating.
Now I have a theory that our government leaders purposely keep everything really messy so we can't find all the crazy things they're doing.
Can't we just have a flat income tax...period...with no other taxes?
I was talking to a sales-representative for a local printer yesterday. We were just talking about this and that. I mentioned to him that in Saudi Arabia the government takes 10-percent of every commercial transaction. And the Saudi government owns every store, construction company, etc. He thought about what I said for a second and then said, "Well that's not bad. Better than what we pay."
How true.
I can't remember in any other scenario something being so difficult to come to conclusion.
As one state resident said, "I wonder how they'll feel when we pay our state taxes 94-days late?"
I have a feeling that they won't be as patient as they expect us to be.
Every morning in the news for the past few weeks there has been a story on someone who is suffering because of the lack of a budget. For the most part these are libraries, schools, and non-profits that provide valuable social products to communities across the state. There are people being laid off. There are places just closing down.
This system just isn't working. It all comes down to party politics. What we hear and read in the news isn't how Representative Joe Smith feels, or how Senator Bob Soandso feels, or God forbid how the citizens of Pennsylvania feels. All we hear is that the Republicans won't vote for this or the Democrats won't vote for that.
Within each party there are leaders. When you are voted to office for the first time your office is in a cold, dark corner of the basement. You have to "earn" your way up the party ladder by kissing the right butts and blindly supporting the interests of the top few people who run the party.
So the architecture of our government all comes down to a few men and women who represent only two interest groups, Republican and Democrat.
Our budget would be done if it just came down to a popular vote, whether that popular vote be among all state lawmakers, or the entire population.
And let's face it, a marriage is a group of two interests and for success there must be a give and take. You can't just argue about it for 94-plus days. That could lead to divorce. Maybe our lawmakers should just divorce themselves from their positions? Or their parties?
I don't know.
I tried to look up what benefits state employees receive. I've always heard people talk about how great it is to land a state job because the benefits are so excellent. I found a great site packed full of information, but it was so complex and involved so many different scenarios that you'd have to be an attorney with a week on your hands to be able to sit down and figure it out.
We're too complex.
I used to have a theory that Alyssa purposely kept her room incredibly messy so I couldn't find anything in there - ummm - incriminating.
Now I have a theory that our government leaders purposely keep everything really messy so we can't find all the crazy things they're doing.
Can't we just have a flat income tax...period...with no other taxes?
I was talking to a sales-representative for a local printer yesterday. We were just talking about this and that. I mentioned to him that in Saudi Arabia the government takes 10-percent of every commercial transaction. And the Saudi government owns every store, construction company, etc. He thought about what I said for a second and then said, "Well that's not bad. Better than what we pay."
How true.
Thursday, October 1, 2009
Sighs of Relief
Well the Phillies wrapped it up last night and secured their third division title in a row. I swear these guys have to make it exciting though. I'm not sure how far they'll go this year. But at least I can breathe a sigh of relief...for now.
I followed up with the cancer center yesterday on all the issues we have going. I expect another contact today from radiation/oncology to confirm some details. But at least I can breathe a sigh of relief...for now.
Two-days this past week Barb's Dad showed up by surprise to work on the spouting and run off on one back corner of our house. These were nice surprises. I know he's very busy and I was trying to convince him not to worry about it. But there he was. He's an excellent problem solver. He did some incredible work as always. He's constantly in our debt. Thank you so much Bill. One other worry that I don't have to concern myself with now. At least I can breathe a sigh of relief about that.
Our disappearing neighbors who suddenly appeared and trimmed up all of our trees have again disappeared. But they did promise to return to trim a few more branches. I won't complain. When someone does something so charitable for me, without even being asked, who am I to argue? I was worried about how the trees would be pruned with me in my current state. Now I can breathe a sigh of relief about that too.
Someone I worked with over 20-years ago gave me a great lead to a literary agent near Philadelphia. Now I can concentrate on getting my book done feeling confident that I have at least one good source to with an inquiry. The odds that the first agent I contact will like my concept is slim. But it's a good start. At least I can breathe a sigh of relief about that for now too!
That leaves me without an overwhelming agenda today. Several tasks have now been "checked" as done in my Day-Timer appointment book.
I still have work to do. I'm just one of those people who is seldom bored.
I have to keep working on pulling together the book.
Also, I recently learned from the Pennsylvania Insurance Commission that if I would accept Medicare (because of my disability) I would have six-months to sign up for a Medi-Gap policy and not be denied because of a pre-existing condition. This is supposed to be a state law. But it's one that I have never heard mentioned before. I would have to move through all of this very carefully to ensure that I don't end up at a loss due to something in the small print.
Plus the furance has to be dusted off and I have to clean the filter to get ready for the winter season. It was in the 40s this morning. Brrrrr. I'm not ready for this.
There's always something to do here, never a dull moment. With the help of those around us it has been made easier. I can't thank everyone who has helped us enough. We appreciate your kindness greatly. There are super heros in this world.
I followed up with the cancer center yesterday on all the issues we have going. I expect another contact today from radiation/oncology to confirm some details. But at least I can breathe a sigh of relief...for now.
Two-days this past week Barb's Dad showed up by surprise to work on the spouting and run off on one back corner of our house. These were nice surprises. I know he's very busy and I was trying to convince him not to worry about it. But there he was. He's an excellent problem solver. He did some incredible work as always. He's constantly in our debt. Thank you so much Bill. One other worry that I don't have to concern myself with now. At least I can breathe a sigh of relief about that.
Our disappearing neighbors who suddenly appeared and trimmed up all of our trees have again disappeared. But they did promise to return to trim a few more branches. I won't complain. When someone does something so charitable for me, without even being asked, who am I to argue? I was worried about how the trees would be pruned with me in my current state. Now I can breathe a sigh of relief about that too.
Someone I worked with over 20-years ago gave me a great lead to a literary agent near Philadelphia. Now I can concentrate on getting my book done feeling confident that I have at least one good source to with an inquiry. The odds that the first agent I contact will like my concept is slim. But it's a good start. At least I can breathe a sigh of relief about that for now too!
That leaves me without an overwhelming agenda today. Several tasks have now been "checked" as done in my Day-Timer appointment book.
I still have work to do. I'm just one of those people who is seldom bored.
I have to keep working on pulling together the book.
Also, I recently learned from the Pennsylvania Insurance Commission that if I would accept Medicare (because of my disability) I would have six-months to sign up for a Medi-Gap policy and not be denied because of a pre-existing condition. This is supposed to be a state law. But it's one that I have never heard mentioned before. I would have to move through all of this very carefully to ensure that I don't end up at a loss due to something in the small print.
Plus the furance has to be dusted off and I have to clean the filter to get ready for the winter season. It was in the 40s this morning. Brrrrr. I'm not ready for this.
There's always something to do here, never a dull moment. With the help of those around us it has been made easier. I can't thank everyone who has helped us enough. We appreciate your kindness greatly. There are super heros in this world.
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