Every now and then Barb will beam in on me, heading directly for my big, bald head.
I typically prepare myself for a kiss on the top of the head. But often times the kiss never comes, and I ask Barb "Ummmm, what are you doing?"
"Checking things out," she says.
"Checking what out?" I ask.
"Checking out all the hair that is coming in," Barb responds.
Hair? Oh please. She's been saying this to me for at least two months now and I know she's just being polite and supportive, but let's face it, there just hasn't been any hair coming in.
Actually as my scalp has continued to go through cycles of peeling from the radiation the result has been smoother and more shiny. Sure there's been some fuzz up there. But it's been leftover stuff and definitely not growing.
But Barb is so sweet and polite.
Well now though I am willing to admit that the little blonde chicken fuzz on my head is actually starting to grow a little. If you catch it at just the right angle, in just the right light, there it is, little blonde chicken fuzz getting longer.
I've never been much on vanity. So the baldness from the radiation has not really bothered me.
I've been told by the doctors that after whole brain radiation the hair can do anything - not come back at all, come back in full, come back just in spots.
I'm sure for awhile I'll be sporting the Uncle Fester look.
But we'll play out the chicken fuzz and see where it leads to.
Friday, August 31, 2007
Thursday, August 30, 2007
Busiest It's Been In Awhile
During the course of this week, it has gotten a little busier. Yesterday, I went with my daughter to help her finalize her wedding cake design. Within the past few days, when Jim seems to feel at his best, we have been trimming a few trees in the yard at a time.
Today, we are going to parents house for a little while to assist them in setting up there computer.
I have been telling Jim that he has had some blonde hair growing from his head since he has gotten through his radiation. I also feel that he maybe has put on a few pounds since we initially became concerned about his weight loss. At the moment, all I continue to see is an upward path to Jim's getting better each day.
Today, we are going to parents house for a little while to assist them in setting up there computer.
I have been telling Jim that he has had some blonde hair growing from his head since he has gotten through his radiation. I also feel that he maybe has put on a few pounds since we initially became concerned about his weight loss. At the moment, all I continue to see is an upward path to Jim's getting better each day.
Wednesday, August 29, 2007
Drugs
I definitely have some mixed reactions about all of the drugs I need to take.
On one hand, at least one of them is keeping the cancer in check which is keeping me alive - pretty significant stuff.
On the other hand, every drug you take creates its own unique side effects which then have to be counteracted with other drugs.
It seems to be a never-ending cycle.
I've worked hard to get off as many drugs as possible. It seems that whenever I'm able to drop one or two, one or two new ones then pop-up. The drugs I need to take are numerous enough that it creates a complex schedule. Some need to be taken in the morning, some at night, some throughout the day. Some do not mix well with others. It's complicated enough that I've designed a chart. Without the chart I don't think I could ever keep track of what I've taken and what I haven't taken.
The other interesting twist involving most of the drugs that cancer patients end up taking is the enormous costs of the drugs. Beyond fighting cancer itself, the only worry I really have is trying to survive the cost of the drugs themselves.
My insurance company has cheated me on prescription benefits. When I originally purchased the policy, certainly before the cancer was detected, the plan summaries I was offered clearly stated that for prescriptions I had a "maximum annual out-of-pocket expense of $2,500." At some point after the policy went into effect they changed the policy to a "maximum annual benefit of $2,500." Quite a difference!
What they did is illegal. I have everything documented. They baited me with their sales literature and then provided me with something else.
I've already gone through two internal appeal processes with the insurance company, which was a joke. Now I'm before the Pennsylvania Insurance Commission, who has to this point already convinced my insurance company to offer me the prescription benefit as originally sold to me, but only for the remainder of 2007.
The insurance company tried to sound generous by saying that they would "honor the original prescription benefit for the remainder of 2007 to allow me time to explore my options."
Options? Cancer patients do not have options. No other insurance company will touch me. And they clearly understand that.
In this day and age, with the costs of drugs being what they are, what type of prescription insurance is a "maximum annual benefit of $2,500?" That offers me, and you, no protection at all. So check your policies!
The chemo drug that I have to take daily costs around $7,000 a month. Really. Now who could afford that?
When I was really suffering from nausea the doctor prescribed a new drug that was having a big impact for cancer patients - $2,000 a month.
To try to drive my appetite the doctors prescribed another new drug - $2,000 a month.
The nausea drug that was prescribed to me actually made things worse for me. Now that's $2,000 just to find that out!
It's been a fight. To make all this work we have to do a tremendous amount of work to seek out assistance programs, many available through the pharmaceutical companies themselves. And with every new drug that is prescribed I must research costs, potential alternatives, options and overall effectiveness.
This is all things learned. I did not know any of this when I started down this road.
But now I do know. The nausea drug for instance that cost $2,000 a month and just made things worse for me - well there was an alternative that has been around for years and years and years, and it cost me $25.
On one hand, at least one of them is keeping the cancer in check which is keeping me alive - pretty significant stuff.
On the other hand, every drug you take creates its own unique side effects which then have to be counteracted with other drugs.
It seems to be a never-ending cycle.
I've worked hard to get off as many drugs as possible. It seems that whenever I'm able to drop one or two, one or two new ones then pop-up. The drugs I need to take are numerous enough that it creates a complex schedule. Some need to be taken in the morning, some at night, some throughout the day. Some do not mix well with others. It's complicated enough that I've designed a chart. Without the chart I don't think I could ever keep track of what I've taken and what I haven't taken.
The other interesting twist involving most of the drugs that cancer patients end up taking is the enormous costs of the drugs. Beyond fighting cancer itself, the only worry I really have is trying to survive the cost of the drugs themselves.
My insurance company has cheated me on prescription benefits. When I originally purchased the policy, certainly before the cancer was detected, the plan summaries I was offered clearly stated that for prescriptions I had a "maximum annual out-of-pocket expense of $2,500." At some point after the policy went into effect they changed the policy to a "maximum annual benefit of $2,500." Quite a difference!
What they did is illegal. I have everything documented. They baited me with their sales literature and then provided me with something else.
I've already gone through two internal appeal processes with the insurance company, which was a joke. Now I'm before the Pennsylvania Insurance Commission, who has to this point already convinced my insurance company to offer me the prescription benefit as originally sold to me, but only for the remainder of 2007.
The insurance company tried to sound generous by saying that they would "honor the original prescription benefit for the remainder of 2007 to allow me time to explore my options."
Options? Cancer patients do not have options. No other insurance company will touch me. And they clearly understand that.
In this day and age, with the costs of drugs being what they are, what type of prescription insurance is a "maximum annual benefit of $2,500?" That offers me, and you, no protection at all. So check your policies!
The chemo drug that I have to take daily costs around $7,000 a month. Really. Now who could afford that?
When I was really suffering from nausea the doctor prescribed a new drug that was having a big impact for cancer patients - $2,000 a month.
To try to drive my appetite the doctors prescribed another new drug - $2,000 a month.
The nausea drug that was prescribed to me actually made things worse for me. Now that's $2,000 just to find that out!
It's been a fight. To make all this work we have to do a tremendous amount of work to seek out assistance programs, many available through the pharmaceutical companies themselves. And with every new drug that is prescribed I must research costs, potential alternatives, options and overall effectiveness.
This is all things learned. I did not know any of this when I started down this road.
But now I do know. The nausea drug for instance that cost $2,000 a month and just made things worse for me - well there was an alternative that has been around for years and years and years, and it cost me $25.
Tuesday, August 28, 2007
Starting Off With A Walk
This morning Jim and I chose to go for a nice walk in the neighborhood. I always enjoy it the most in the morning during quiet time. Upon returning he's making himself a couple of ham and cheese sandwiches. I certainly hope that things continue to improve the way that they have been, with his appetite.
Jim and I went to my daughters new home yesterday and I know we both enjoyed the visit. My daughter and her fiance' always come over just about every Friday evening so I always look forward to that visit. It's hard to believe the wedding is as close as it already is. Things seem to be falling into place as time passes. I certainly continue to anticipate being teary eyed when that day arrives, because I don't where the time goes, I only recall a short time ago when she seemed to still be an infant. Alyssa and Charlie must always know that I will always be there for the both of them.
My daughters birthday is this coming weekend, once again, WHERE DOES THE TIME GO!!!
Jim and I went to my daughters new home yesterday and I know we both enjoyed the visit. My daughter and her fiance' always come over just about every Friday evening so I always look forward to that visit. It's hard to believe the wedding is as close as it already is. Things seem to be falling into place as time passes. I certainly continue to anticipate being teary eyed when that day arrives, because I don't where the time goes, I only recall a short time ago when she seemed to still be an infant. Alyssa and Charlie must always know that I will always be there for the both of them.
My daughters birthday is this coming weekend, once again, WHERE DOES THE TIME GO!!!
Monday, August 27, 2007
New Week, New Developments
Two pretty major things happened for me into the end of last week.
First, it was my father's 80th birthday and a big surprise breakfast was planned in his honor at the Lantern Lodge in Myerstown. This had been a major mark on my calendar for the past 4 to 6 weeks. I wanted to at least have enough strength to attend, and also I wanted to have the ability to eat, to enjoy the breakfast without seeming impolite or rude.
Everything seemed to pull together quite well. My father seemed surprised. I do take after my Dad so I know how he felt. Both of us hate public attention, certainly being the center of attention. But I know he would be touched by such a show of consideration and affection.
And he deserves it. He's put together quite an impressive run of 80-years so far, and he's not done yet by a long shot.
Special thanks to my Mom for pulling the whole thing together, and my sister for getting out the invites. It was a fantastic opportunity for me to see a lot of people at once that I typically do not have enough opportunities to see.
And special thoughts to Muk (Martha) who we know really wanted to join us from Florida but could not - this time. Muk, our thoughts are with you everyday. Be patient as you recover and let your strength rebuild. You were with us in heart!
And as far as food goes...it seems like a minor miracle to me...but I am starting to eat again. It's all so peculiar and I do not completely understand it. Radiation can have such odd effects on our cells.
But I have made some major breakthroughs with the eating and I believe that I am well on my way.
It did start with the infamous hot ham and cheese breakfast sandwiches. At my Dad's party I completely cleaned my plate of french toast and bacon (including Barb's bacon), and I was left still wanting a side order of home fries. By yesterday afternoon I was eating a full chicken roaster dinner that Barb is famous for, complete with mashed potatoes, gravy, and corn on the cob.
So...I'm going to try to keep building on it from there. One thing my doctor said to me on my last visit sticks with me continuously - "It's a shame for you to have to suffer with this (not eating) after all you've already been through."
First day of school in Marietta!
First, it was my father's 80th birthday and a big surprise breakfast was planned in his honor at the Lantern Lodge in Myerstown. This had been a major mark on my calendar for the past 4 to 6 weeks. I wanted to at least have enough strength to attend, and also I wanted to have the ability to eat, to enjoy the breakfast without seeming impolite or rude.
Everything seemed to pull together quite well. My father seemed surprised. I do take after my Dad so I know how he felt. Both of us hate public attention, certainly being the center of attention. But I know he would be touched by such a show of consideration and affection.
And he deserves it. He's put together quite an impressive run of 80-years so far, and he's not done yet by a long shot.
Special thanks to my Mom for pulling the whole thing together, and my sister for getting out the invites. It was a fantastic opportunity for me to see a lot of people at once that I typically do not have enough opportunities to see.
And special thoughts to Muk (Martha) who we know really wanted to join us from Florida but could not - this time. Muk, our thoughts are with you everyday. Be patient as you recover and let your strength rebuild. You were with us in heart!
And as far as food goes...it seems like a minor miracle to me...but I am starting to eat again. It's all so peculiar and I do not completely understand it. Radiation can have such odd effects on our cells.
But I have made some major breakthroughs with the eating and I believe that I am well on my way.
It did start with the infamous hot ham and cheese breakfast sandwiches. At my Dad's party I completely cleaned my plate of french toast and bacon (including Barb's bacon), and I was left still wanting a side order of home fries. By yesterday afternoon I was eating a full chicken roaster dinner that Barb is famous for, complete with mashed potatoes, gravy, and corn on the cob.
So...I'm going to try to keep building on it from there. One thing my doctor said to me on my last visit sticks with me continuously - "It's a shame for you to have to suffer with this (not eating) after all you've already been through."
First day of school in Marietta!
Friday, August 24, 2007
Deep Thoughts
Have you ever noticed that everyone's index finger is the perfect size to fit in their nostrils?
Thursday, August 23, 2007
Early Fall Weather
It was a welcome break to normal summer time temps in the 90s. But it was strange to have these past four days in August in the 60s. Life does keep us on our toes!
I'm proud to report that the first ham sandwich has been followed by another ham sandwich. So at least I know that I'm not just dealing with a one-time coincidence.
But I also did try a breakfast sausage sandwich, and I had to quit half-way through that (too much bun not enough sausage). And I began work on a "Youndt's Yummy" from the deli across the street but that just didn't hit the spot for me either.
Right now my appetite seems to be growing and my tolerance of eating in general is becoming more open and diverse. But I am still very picky.
I have specific cravings. They come on suddenly and typically are impossible to meet because they're so odd. Hmmmm, perhaps I'm pregnant.
Right now I'm craving a piece of breakfast ham, good home fried potatoes, and a biscuit. If it magically appeared before me now I couldn't guarantee you I'd be able to eat it. But I am craving it right now.
So Barb dove into the freezer and is working on Ore-Ida's version of home fries. Barb keeps a very impressive Ore-Ida collection, I guess for just this such type of emergency. (smile)
It looks like next week will be a week without doctors! Woohoo! My doctors are great but . . . well . . . you know what I mean.
I'm proud to report that the first ham sandwich has been followed by another ham sandwich. So at least I know that I'm not just dealing with a one-time coincidence.
But I also did try a breakfast sausage sandwich, and I had to quit half-way through that (too much bun not enough sausage). And I began work on a "Youndt's Yummy" from the deli across the street but that just didn't hit the spot for me either.
Right now my appetite seems to be growing and my tolerance of eating in general is becoming more open and diverse. But I am still very picky.
I have specific cravings. They come on suddenly and typically are impossible to meet because they're so odd. Hmmmm, perhaps I'm pregnant.
Right now I'm craving a piece of breakfast ham, good home fried potatoes, and a biscuit. If it magically appeared before me now I couldn't guarantee you I'd be able to eat it. But I am craving it right now.
So Barb dove into the freezer and is working on Ore-Ida's version of home fries. Barb keeps a very impressive Ore-Ida collection, I guess for just this such type of emergency. (smile)
It looks like next week will be a week without doctors! Woohoo! My doctors are great but . . . well . . . you know what I mean.
Wednesday, August 22, 2007
With Each Passing Day
With each passing day,
it seems to get better.
My anniversary gift from Jim,
was with this battle,
he's starting to win.
Some days I don't have much to say,
you feel the need to break away.
My heart and soul is with every step,
because the battle isn't finished yet.
I will make sure with each passing day,
that everything goes his way!!!
it seems to get better.
My anniversary gift from Jim,
was with this battle,
he's starting to win.
Some days I don't have much to say,
you feel the need to break away.
My heart and soul is with every step,
because the battle isn't finished yet.
I will make sure with each passing day,
that everything goes his way!!!
Tuesday, August 21, 2007
Ham and Cheese Sandwich
"Barb, would you please run across the street to the deli and grab me a ham and cheese breakfast sandwich?" I suddenly asked.
"Really?" Barb answered.
"Yes." I said, keeping my answer short, my focus set.
"OK. I'll be right back," Barb responded. She's asked me countless times if I've wanted something from the deli. She's anxiously awaited the moment I would ask her for something.
Barb was back in a flash, hot ham and cheese in hand. Nothing much, good ham, melted American, on a hamburger roll, wrapped in aluminum foil.
I was focused on the sandwich. I had cravings before which fell to dust upon my first bite. This time I felt different. I felt hungry.
I heard Barb getting a plate out.
"No plate," I quickly asserted.
I was thinking to myself let's just do this, let's just get this over with.
Barb handed me the wrapped up ball of foil and a paper towel. I opened the foil quickly and plucked out the sandwich.
I took a huge bite.
I usually nibble, gingerly, with great hesitation.
It tasted great. Mmmmmmm.....ham.
I took another huge bite, and another, and another.
I didn't stop until I just had one big bite of sandwich left. Suddenly the feat I accomplished became aware to me. I was happy, a little relieved. I was done. I threw the last bite of sandwich away.
It's slow. But the appetite is coming back. If you would have told me last week that I'd be eating a ham and cheese sandwich soon I would have made quite a face.
I went to sleep last evening dreaming of a cheese steak from the Twin Kiss in Myerstown. And it was made exactly the way it was when I was 12-years-old.
"Really?" Barb answered.
"Yes." I said, keeping my answer short, my focus set.
"OK. I'll be right back," Barb responded. She's asked me countless times if I've wanted something from the deli. She's anxiously awaited the moment I would ask her for something.
Barb was back in a flash, hot ham and cheese in hand. Nothing much, good ham, melted American, on a hamburger roll, wrapped in aluminum foil.
I was focused on the sandwich. I had cravings before which fell to dust upon my first bite. This time I felt different. I felt hungry.
I heard Barb getting a plate out.
"No plate," I quickly asserted.
I was thinking to myself let's just do this, let's just get this over with.
Barb handed me the wrapped up ball of foil and a paper towel. I opened the foil quickly and plucked out the sandwich.
I took a huge bite.
I usually nibble, gingerly, with great hesitation.
It tasted great. Mmmmmmm.....ham.
I took another huge bite, and another, and another.
I didn't stop until I just had one big bite of sandwich left. Suddenly the feat I accomplished became aware to me. I was happy, a little relieved. I was done. I threw the last bite of sandwich away.
It's slow. But the appetite is coming back. If you would have told me last week that I'd be eating a ham and cheese sandwich soon I would have made quite a face.
I went to sleep last evening dreaming of a cheese steak from the Twin Kiss in Myerstown. And it was made exactly the way it was when I was 12-years-old.
Friday, August 17, 2007
A Regular Customer
It's been pretty rare that I have a week without a doctor's appointment. I'm a regular customer. At the local hospital lab I just wave hello when I walk in and immediately get directed to the back where they draw blood. I'm looking forward to not being such a regular customer.
Today I meet with a new oncologist. We learned that our current oncologist just went through a kidney transplant. It was a reminder how much how many are dealing with health issues all around us. Often times I never hesitated to consider what so many around me might be going through. But something like cancer does open your eyes to so many things, and make you more sensitive. I would say I approach almost everyone now thinking that there is something difficult in their lives that they are dealing with, a philosophy I would not have had before.
The main purpose of today's visit is to follow-up on my nutritional challenges. I'm anxious for the obligatory weigh-in today to see exactly where my weight is. I've been doing better. But all of this has been such a slow process. I believe my challenges with eating are beginning to get better. But it's slow. It's slow.
Recently a friend who went through their own radiation treatments and strongly recovered shared with me the challenges he had with eating after radiation and beyond. It was so reassuring to hear some of the subtle things he noted that I am also experiencing...but which seem crazy to many.
For instance, I reached a stretch where thoughts or sights or smells of food would make me nauseous. I would see a food commercial on TV and it would instantly turn my stomach. (I never realized how many food commercials there are on TV!) Barb would have a pizza delivered to the house and the smell would turn me right away.
A big part of the reason why I feel I'm on the upswing is the fact that I have gotten over some of these feelings. My tolerance for food, thoughts, sights, or smells, and in general, has gotten much better.
I did think that next week would be one of those rare celebratory weeks without a doctor's appointment. But yesterday a small piece of a molar just fell off (shaking head) so now it's at least off to the dentist next week!
Hey...I don't want these doctors to forget about me huh?
Today I meet with a new oncologist. We learned that our current oncologist just went through a kidney transplant. It was a reminder how much how many are dealing with health issues all around us. Often times I never hesitated to consider what so many around me might be going through. But something like cancer does open your eyes to so many things, and make you more sensitive. I would say I approach almost everyone now thinking that there is something difficult in their lives that they are dealing with, a philosophy I would not have had before.
The main purpose of today's visit is to follow-up on my nutritional challenges. I'm anxious for the obligatory weigh-in today to see exactly where my weight is. I've been doing better. But all of this has been such a slow process. I believe my challenges with eating are beginning to get better. But it's slow. It's slow.
Recently a friend who went through their own radiation treatments and strongly recovered shared with me the challenges he had with eating after radiation and beyond. It was so reassuring to hear some of the subtle things he noted that I am also experiencing...but which seem crazy to many.
For instance, I reached a stretch where thoughts or sights or smells of food would make me nauseous. I would see a food commercial on TV and it would instantly turn my stomach. (I never realized how many food commercials there are on TV!) Barb would have a pizza delivered to the house and the smell would turn me right away.
A big part of the reason why I feel I'm on the upswing is the fact that I have gotten over some of these feelings. My tolerance for food, thoughts, sights, or smells, and in general, has gotten much better.
I did think that next week would be one of those rare celebratory weeks without a doctor's appointment. But yesterday a small piece of a molar just fell off (shaking head) so now it's at least off to the dentist next week!
Hey...I don't want these doctors to forget about me huh?
Wednesday, August 15, 2007
Wedding Preparations
With only a little over a month to go for the wedding, things are definitely falling into place. RSVP's continue to be returned on a daily basis and the reality is right there. I know that when the day finally arives, I will be a total headcase, the one and only daughter that I have will be starting her life and all that goes with it. I continue to think back and wonder where the time has gone, it only feels like yesterday as she was growing up and it happened much quicker than anyone would have anticipated.
I am going to try and have a grip on my emotions, but I also know that I am kidding myself. In a way, I would like to turn back the clock and go back to the time when she was just an infant and start it all over again. I know I can't do that, but the wishful thinking is there. She knows that I only want what is best for her and I know that she will experience the most wonderful things in life.
She also knows that she will always be my baby!!!
I am going to try and have a grip on my emotions, but I also know that I am kidding myself. In a way, I would like to turn back the clock and go back to the time when she was just an infant and start it all over again. I know I can't do that, but the wishful thinking is there. She knows that I only want what is best for her and I know that she will experience the most wonderful things in life.
She also knows that she will always be my baby!!!
Tuesday, August 14, 2007
Little Update
Sorry we haven't been posting updates daily lately. No new news is good news. I've always said - give me boring and plenty of it, life is exciting enough without seeking out excitement.
I've always said I'd never jump out of a perfectly good plane just for thrills. Just taking the car out into traffic is plenty exciting enough for me!
And I've been through enough excitement this year, so a boring week or two is definitely in order.
My energy levels continue to get better each week. I have to focus on rebuilding strength and continuing to exercise. My eating has gotten slightly better and I continue to work on it. But I've got a long way to go with the eating yet also. I do think that I've at least been able to level off the weight loss.
Thanks to everyone for their continued support. It's a long road. But the road seems to be leading out over the horizon and not just running in a circle.
I've always said I'd never jump out of a perfectly good plane just for thrills. Just taking the car out into traffic is plenty exciting enough for me!
And I've been through enough excitement this year, so a boring week or two is definitely in order.
My energy levels continue to get better each week. I have to focus on rebuilding strength and continuing to exercise. My eating has gotten slightly better and I continue to work on it. But I've got a long way to go with the eating yet also. I do think that I've at least been able to level off the weight loss.
Thanks to everyone for their continued support. It's a long road. But the road seems to be leading out over the horizon and not just running in a circle.
Friday, August 10, 2007
How to Help
Before I was diagnosed with cancer I already had made by voice heard on healthcare reform in this country.
To who? Oh anyone who would listen. People who know me well know that I never shy from a good, productive debate.
Being diagnosed with cancer made some of the realities of our current system a bit too real. I, in essence, became one of the victims of the healthcare system that I had previously shown concern for.
An extraordinary amount of people have come forward to ask me "How can I help?" It's been so touching. With such a phenomenal support group around me I've been able to focus on recovery and fighting this thing. I've been so well looked after that I've ended up telling many generous people that "I've got everything I need. Thank you."
But there is one thing that everyone can do, if you deem it worthy. You can help by letting your voice be heard about healthcare reform.
It's always been my belief that we cannot truly consider ourselves a civilized society until we ensure that our sick, elderly, and less fortunate are being cared for. All the values taught me by my family and my church family tell my heart and mind that what we're now doing is actually morally wrong.
The driving force behind all decisions in our current healthcare systems (hospitals, insurance companies, the whole network) is profit. When profit is the driving force in decision making, actual care of our brothers and sisters is at the most secondary.
Do you feel morally responsible disallowing the sick, the elderly, the less fortunate care that they need so profits can still appease board of directors and thus stock holders?
For me - I've been hanging in there but have had to expend a great deal of energies to fighting - with insurance companies, hospital billing departments, government review boards. It's depressing and frustrating. It's crazy.
I know it frustrates the doctors. On many occassions my doctors have had to argue procedures back and forth with my insurance company as the insurance company tries to just put a stop to everything and anything.
Because of pre-existing condition clauses across the industry, a cancer patient like me is stuck without options. No other insurance company will touch me now. And I'm left at the mercy of mine, who of course realize their position of power and works to save money and strip care from thier client - me.
It, of course, is a complex issue. But I do feel it's one of our society's greatest current faults. The immense profits that the healthcare industry has enjoyed in recent years has allowed for investment in new technologies and research possibilities. But it has also resulted in ever-increasing costs while taking advantage of the nation's most at need.
I could write 10-pages...but...I won't. But for all those who have offered help - please consider our current healthcare system, and consider what you may be able to do to make your voice heard.
We have a great country - the greatest. But we can never rest at trying to improve ourselves.
To who? Oh anyone who would listen. People who know me well know that I never shy from a good, productive debate.
Being diagnosed with cancer made some of the realities of our current system a bit too real. I, in essence, became one of the victims of the healthcare system that I had previously shown concern for.
An extraordinary amount of people have come forward to ask me "How can I help?" It's been so touching. With such a phenomenal support group around me I've been able to focus on recovery and fighting this thing. I've been so well looked after that I've ended up telling many generous people that "I've got everything I need. Thank you."
But there is one thing that everyone can do, if you deem it worthy. You can help by letting your voice be heard about healthcare reform.
It's always been my belief that we cannot truly consider ourselves a civilized society until we ensure that our sick, elderly, and less fortunate are being cared for. All the values taught me by my family and my church family tell my heart and mind that what we're now doing is actually morally wrong.
The driving force behind all decisions in our current healthcare systems (hospitals, insurance companies, the whole network) is profit. When profit is the driving force in decision making, actual care of our brothers and sisters is at the most secondary.
Do you feel morally responsible disallowing the sick, the elderly, the less fortunate care that they need so profits can still appease board of directors and thus stock holders?
For me - I've been hanging in there but have had to expend a great deal of energies to fighting - with insurance companies, hospital billing departments, government review boards. It's depressing and frustrating. It's crazy.
I know it frustrates the doctors. On many occassions my doctors have had to argue procedures back and forth with my insurance company as the insurance company tries to just put a stop to everything and anything.
Because of pre-existing condition clauses across the industry, a cancer patient like me is stuck without options. No other insurance company will touch me now. And I'm left at the mercy of mine, who of course realize their position of power and works to save money and strip care from thier client - me.
It, of course, is a complex issue. But I do feel it's one of our society's greatest current faults. The immense profits that the healthcare industry has enjoyed in recent years has allowed for investment in new technologies and research possibilities. But it has also resulted in ever-increasing costs while taking advantage of the nation's most at need.
I could write 10-pages...but...I won't. But for all those who have offered help - please consider our current healthcare system, and consider what you may be able to do to make your voice heard.
We have a great country - the greatest. But we can never rest at trying to improve ourselves.
Wednesday, August 8, 2007
Keepin' It Simple
Things like cancer have a way of breaking down your life to the simplest of things. Once you've been diagnosed, and enter treatments, you find yourself quickly focusing on accomplishing the simple things well, and just not worrying about everything else.
But the simplest things, when you have cancer, can be the most complex or most challenging.
There is after all only so much energy to go around during any given day. The fatique effects from radiation can go on for months and months. And the fatique effects from chemotherapy are always ready to call a surprise nap.
There is timing between when medication is taken and how that fits into other simple tasks like eating or exercise. It's a dance each day between trying to read what you're body is telling you and mixing it with the other simple regiments of the day.
Our alarm goes off every morning at 5 a.m. so I can take my chemo. I'm not allowed to eat for two hours before chemo or at least one hour after. My second chemo session of the day is at 5 p.m.
So I have to try to time when I'm going to be hungry, or at least plan to eat whether I'm ready or not, at very specific times. (hang on, I need another handful of Fruit Loops - this is one of those eating times) The simple task of eating can be challenging, managing it at allowed times only, and balancing it with prescriptions that turn my digestive system into an amusement park.
For many eating is a very taken for granted task of all of our days. For me, eating is the main focus of the day because of my nutritional challanges and my recent weight loss. (another handful of Fruit Loops)
Just over an hour ago I meticuously planned to start with a fresh peach, hours after the chemo cleared the belly. The fresh peach was chased back with 2-ounces of protein drink. I still think it's funny they say it's "Wild Cherry" flavored. lol How about cough syrup flavored?
Now I'm munching on the Fruit Loops. It's not very nutritious, but it does provide me with some fiber, and fills my belly.
I will try to round it out with a small banana nut muffin and a small piece of carrot cake.
I know. I know. Not the healthiest foods, although I have been eating tons of fruit. But it's what I can get my belly to take right now. The savory tastes are still slowly coming back.
But when you're a cancer patient, recovering from severe treatments, life has to be kept simple.
To most of us we'd never consider the potential reality of any of our lives suddenly slowing to this simplistic form. But it is, of course, a reality that plays out in so many lives all around us, and around the world.
The most challenging and important action of my day is just to eat and try to save any further weight loss.
But the simplest things, when you have cancer, can be the most complex or most challenging.
There is after all only so much energy to go around during any given day. The fatique effects from radiation can go on for months and months. And the fatique effects from chemotherapy are always ready to call a surprise nap.
There is timing between when medication is taken and how that fits into other simple tasks like eating or exercise. It's a dance each day between trying to read what you're body is telling you and mixing it with the other simple regiments of the day.
Our alarm goes off every morning at 5 a.m. so I can take my chemo. I'm not allowed to eat for two hours before chemo or at least one hour after. My second chemo session of the day is at 5 p.m.
So I have to try to time when I'm going to be hungry, or at least plan to eat whether I'm ready or not, at very specific times. (hang on, I need another handful of Fruit Loops - this is one of those eating times) The simple task of eating can be challenging, managing it at allowed times only, and balancing it with prescriptions that turn my digestive system into an amusement park.
For many eating is a very taken for granted task of all of our days. For me, eating is the main focus of the day because of my nutritional challanges and my recent weight loss. (another handful of Fruit Loops)
Just over an hour ago I meticuously planned to start with a fresh peach, hours after the chemo cleared the belly. The fresh peach was chased back with 2-ounces of protein drink. I still think it's funny they say it's "Wild Cherry" flavored. lol How about cough syrup flavored?
Now I'm munching on the Fruit Loops. It's not very nutritious, but it does provide me with some fiber, and fills my belly.
I will try to round it out with a small banana nut muffin and a small piece of carrot cake.
I know. I know. Not the healthiest foods, although I have been eating tons of fruit. But it's what I can get my belly to take right now. The savory tastes are still slowly coming back.
But when you're a cancer patient, recovering from severe treatments, life has to be kept simple.
To most of us we'd never consider the potential reality of any of our lives suddenly slowing to this simplistic form. But it is, of course, a reality that plays out in so many lives all around us, and around the world.
The most challenging and important action of my day is just to eat and try to save any further weight loss.
Monday, August 6, 2007
Happy Anniversary Barbara!
I first met Barb at work. I just took a job as art director at a golf outerwear manufacturer and I was being taken around the company's two buildings and being introduced to departments and personnel.
I was led into the customer service department, and across the room, hard at work, was Barb. Immediately I felt my stomach drop, and saw stars and little fairy cupids dancing around my head. What a knockout!
I stumbled through a few introductions, pretended to have a conversation or two, and continued to have my attention drawn towards Barb, still hard at work across the room.
Eventually the introductions led me to Barb's desk. I swallowed hard and introduced myself, "Hi. I'm Jim Albert. I'm the new art director," I said, tying to look like a lost puppy.
"Do you mind? You're blocking out all of my light," said Barb, returning to her work.
Ouch.
Now I just felt like I'd been kicked in the stomach. I straggled away with my tail between my legs.
It took some further work on my part to eventually get Barb's attention, and then convince her that I may be worth a conversation or two.
I wore her down. Eventually I asked her out when she was tired, had the flu, and was drinking too much...and she unbelievably said "Yes."
Happy Anniversary Barbie! You're my perfect match...forever!
Sunday, August 5, 2007
Sunday Morning
Well, I can honestly say that I have mostly completed all the wedding invitations with the exception of a few straglers. It's a really good feeling and I enjoyed myself while I was doing them. I will be anxious to see people's reaction to them.
I am watching Jim eat a few chocolate chip cookies, I guess you could call it breakfast. I made sure that I got him some at the grocery store yesterday when I went with my mother.
The month of August has proven to be a busy month and the wedding will be here before we know it. So everyone have a nice and relaxing Sunday!!!
I am watching Jim eat a few chocolate chip cookies, I guess you could call it breakfast. I made sure that I got him some at the grocery store yesterday when I went with my mother.
The month of August has proven to be a busy month and the wedding will be here before we know it. So everyone have a nice and relaxing Sunday!!!
Friday, August 3, 2007
Au Gratin Potatoes
Au Gratin potatoes?
Yes. Aug Gratin potatoes provided me with what I considered a big breakthrough yesterday.
I actually ate some. It didn't taste great to me. But, more importantly, it didn't taste bad either.
I haven't been able to eat anything cooked, or savory in nature. I think it will take some work, and it will be a bit to build myself up to regular-sized portions, but I take this as at least a good initial sign. Au Gratin potatoes.
We're busy with Alyssa and Charlie's wedding invitations. They've got to go! And we're on it!
Hope everyone finds some shade or some air conditioning to spend their day in today. I'll be trying to find out what comes next after au gratin potatoes - when you're recovering from cancer treatments you have modest goals!
Yes. Aug Gratin potatoes provided me with what I considered a big breakthrough yesterday.
I actually ate some. It didn't taste great to me. But, more importantly, it didn't taste bad either.
I haven't been able to eat anything cooked, or savory in nature. I think it will take some work, and it will be a bit to build myself up to regular-sized portions, but I take this as at least a good initial sign. Au Gratin potatoes.
We're busy with Alyssa and Charlie's wedding invitations. They've got to go! And we're on it!
Hope everyone finds some shade or some air conditioning to spend their day in today. I'll be trying to find out what comes next after au gratin potatoes - when you're recovering from cancer treatments you have modest goals!
Wednesday, August 1, 2007
Pluggin' Along
Although my recovery from the radiation always seemed slow, it also always seemed to be continuing, meaning every week I'd feel better and better.
I do feel for the first time that my recovery has kind of reached an apex due to my nutritional issues. I don't believe that I'll be able to continue recovery as I have until I can first fix the issues I have with digestion and appetite.
So that continues to be my number one focus into this week. We have brought in two different protein drinks to help supplement my diet. Beyond that I'm still trying to eat what I'm capable of eating (which is a very short list).
I can feel weakness directly resulting from my lack of a full, well-balanced diet. I continue to work on it. And I continue to be confident that it is part of the process of rehabilitation and something that will in time pass.
Met with my nuerosurgeon yesterday. He oversaw the radiation treatments. He too felt that the latest MRI was very positive. He translated a few big words for us. All in all there was really no new news though.
This morning Barb and I are off to the dentist for a husband/wife dental appointment. I'm bound for two fillings today. Eeeek. I'm sure that will help my appetite! lol
Thanks to everyone for the continuing support. I know this recovery process seems unusually long and grueling. But, one thing we did get from the nuerosurgeon yesterday that we took as a positive note also, is that he felt my recovery was perfectly normal at this point, and that it was also normal that I have much recovery to go. So...keep hanging in there with me! I know you all will!
I do feel for the first time that my recovery has kind of reached an apex due to my nutritional issues. I don't believe that I'll be able to continue recovery as I have until I can first fix the issues I have with digestion and appetite.
So that continues to be my number one focus into this week. We have brought in two different protein drinks to help supplement my diet. Beyond that I'm still trying to eat what I'm capable of eating (which is a very short list).
I can feel weakness directly resulting from my lack of a full, well-balanced diet. I continue to work on it. And I continue to be confident that it is part of the process of rehabilitation and something that will in time pass.
Met with my nuerosurgeon yesterday. He oversaw the radiation treatments. He too felt that the latest MRI was very positive. He translated a few big words for us. All in all there was really no new news though.
This morning Barb and I are off to the dentist for a husband/wife dental appointment. I'm bound for two fillings today. Eeeek. I'm sure that will help my appetite! lol
Thanks to everyone for the continuing support. I know this recovery process seems unusually long and grueling. But, one thing we did get from the nuerosurgeon yesterday that we took as a positive note also, is that he felt my recovery was perfectly normal at this point, and that it was also normal that I have much recovery to go. So...keep hanging in there with me! I know you all will!
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