Well, with the steady help of Miss Garmin, I have successfully negotiated the highway system, and am safely back in Pa. The old bounder gobbled up one thousand miles in a day and a half without complaint. I will make an effort to post the last of the travelogue series soon.
I had a great 3 week break from the business of being sick, and wanted to write a cheerful piece regarding great friends, kayak trips, campfires, and handicapped raccoons on welfare, but my mind stubbornly remains fixed on the battles ahead. Medical procedures, insurance issues, RE market crash, and foreclosure battles, are all ominously looming. Historically, I have been successful fighting these kind of battles, but I believe that I have sacrificed my health in the process.
Do I attack these problems, and chance stress killing me, or avoid these issues, and chance one day find myself still sick and in poverty? An interesting paradox.... How to create and spend emotional capital? In this battle, I seem to be the general and the private, entities with conflicting goals, and nearly impossible to do both jobs well. Once again, I find that my life choices have left me in a precarious position.
The search for options begins today.
Sunday, May 17, 2009
Friday, May 8, 2009
May 8, 2009
Hi Yall, Once again, not much to report on medical issues... Stress reduction is on schedule, and, after careful testing, most of my body parts are trending toward normal. A tribute to the basic design of the body, and to the embedded directives of the mind. I still tire easily, 4 or 5 hours of activity, and I am OK, more than that, exhausted..... I expect this to keep improving right up until my next series of treatments. LOL I am looking forward to getting the BCG treatments finished, and having 3 months of doctor free bliss.
Had a great kayak trip on Monday, and moved up the river about 40 miles on Tues. I am camped here at the Tyler Bend campground on the Buffalo River with about 20 friends, and having a great time. This river is said to be one of the best in the country for kayaks and canoes..... OK, maybe the best for our kind of kayaking...... interesting but safe.... it's a very fine line. The definition of perfect may be, that others end up swimming, but that you don't.
Every morning at 9:00, we meet for “hugs and mugs”, and every afternoon we meet at 4:00 for “circle”..... I guess that some would call it happy hour, but we don't. In any event, these meeting are for social interaction, information sharing, and activity planning. Wednesday afternoon we were visited by a heavily armed lady park ranger (her side arm looked to be a 9mm, with 4 extra ammo clips) she seemed ready and willing to handle any trouble that might arise.
The ranger welcomed us, and then advised us of the following.... torrential rains, flash flood warnings, river closed due to flood water, (no help if you got into trouble), cotton mouth water moccasins fleeing the flood waters, diseased ticks, vicious stinging insects, and record poison ivy. She wished us well, and advised us to expect a visit from another ranger. Sure enough, another ranger arrived to explain that behind schedule construction may impact reservations at the next stop on the circuit. The Win's, veteran travelers all, took this in stride, card games, local restaurants, car trips, paperwork, and blog writing.... To be fair, in spite of the bad news delivered, and prominent weaponry, the rangers were pleasant and easy going.
I am attempting to repair some of the leaks in my roof, (never had rain like this out west) and tracking down the replacement DVR box that Direct TV sent to “General Delivery” by way of Fedex. The Fedex folks are somewhat confused by a person with no address, after all, they are all about addresses.
Max Bob (in keeping with the spirit of the south, Kurt Bob has added “Bob” to everyone's name) took us on a long road trip yesterday to the “Lost Valley”. (Perfect weather, river still at flood stage) We passed hundreds of rental canoes and kayaks poised for action, I suspect that the river would resemble a Walmart parking lot should conditions moderate.... Beautiful country, great lunch at a cliff hanger cafe, and a hike to a cave and waterfalls. I didn't go, preferring to take a nap in the parking lot, (it is hell getting old and being sick), but they came back dirty and happy. Surprising how many fun things, are also messy..... Like being a kid again..... BTW, the Win trips are sometimes described as a never ending “summer camp” for big kids.
Several of us may leave early and go to Branson Mo. for a country music fix. It is on my way to Pa, several singles MH groups are there, and I have never been there. More than enough reasons to go....
Win's are organized.
Win's find neat stuff.
Win's have nice kayaks.
Win's are happy and like to eat.
River at 13.8' flood stage. Bottom sign was under water at 18' flood stage.
1850 Homestead.
Max Bob and Judy Bob practicing for old age.
Win's are friendly.....
Had a great kayak trip on Monday, and moved up the river about 40 miles on Tues. I am camped here at the Tyler Bend campground on the Buffalo River with about 20 friends, and having a great time. This river is said to be one of the best in the country for kayaks and canoes..... OK, maybe the best for our kind of kayaking...... interesting but safe.... it's a very fine line. The definition of perfect may be, that others end up swimming, but that you don't.
Every morning at 9:00, we meet for “hugs and mugs”, and every afternoon we meet at 4:00 for “circle”..... I guess that some would call it happy hour, but we don't. In any event, these meeting are for social interaction, information sharing, and activity planning. Wednesday afternoon we were visited by a heavily armed lady park ranger (her side arm looked to be a 9mm, with 4 extra ammo clips) she seemed ready and willing to handle any trouble that might arise.
The ranger welcomed us, and then advised us of the following.... torrential rains, flash flood warnings, river closed due to flood water, (no help if you got into trouble), cotton mouth water moccasins fleeing the flood waters, diseased ticks, vicious stinging insects, and record poison ivy. She wished us well, and advised us to expect a visit from another ranger. Sure enough, another ranger arrived to explain that behind schedule construction may impact reservations at the next stop on the circuit. The Win's, veteran travelers all, took this in stride, card games, local restaurants, car trips, paperwork, and blog writing.... To be fair, in spite of the bad news delivered, and prominent weaponry, the rangers were pleasant and easy going.
I am attempting to repair some of the leaks in my roof, (never had rain like this out west) and tracking down the replacement DVR box that Direct TV sent to “General Delivery” by way of Fedex. The Fedex folks are somewhat confused by a person with no address, after all, they are all about addresses.
Max Bob (in keeping with the spirit of the south, Kurt Bob has added “Bob” to everyone's name) took us on a long road trip yesterday to the “Lost Valley”. (Perfect weather, river still at flood stage) We passed hundreds of rental canoes and kayaks poised for action, I suspect that the river would resemble a Walmart parking lot should conditions moderate.... Beautiful country, great lunch at a cliff hanger cafe, and a hike to a cave and waterfalls. I didn't go, preferring to take a nap in the parking lot, (it is hell getting old and being sick), but they came back dirty and happy. Surprising how many fun things, are also messy..... Like being a kid again..... BTW, the Win trips are sometimes described as a never ending “summer camp” for big kids.
Several of us may leave early and go to Branson Mo. for a country music fix. It is on my way to Pa, several singles MH groups are there, and I have never been there. More than enough reasons to go....
Win's are organized.
Win's find neat stuff.
Win's have nice kayaks.
Win's are happy and like to eat.
River at 13.8' flood stage. Bottom sign was under water at 18' flood stage.
1850 Homestead.
Max Bob and Judy Bob practicing for old age.
Win's are friendly.....
Monday, May 4, 2009
May 4, 2009
Not much to report on the medical front..... It turns out that my will is strong, but my body, not so much. It seems that my desire to “get back to normal”, and do all of the things that I used to enjoy doing, is a bit premature. I tire easily, and do not recover quickly. I am thinking that this is a result of my recent medical battering..... at least I hope so, god forbid that I am just getting old.
And now..... for the travelogue!!!!!
I am in Arkansas with about 25 other Win's, camped on the banks of the White river. I have been working religiously on my “stress reduction” and rehabilitation. (see attached photos) It has rained nearly every day, which has limited the kayak activities, but not slowed down the other stuff.... BBQ/potluck, campfire, caverns, country music, decorating Kurt, mountain music, dancing, laundry, Walmart, post office, etc...... I know most of these folks from winters in the west. It kind of has the feeling of a reunion, which feels familiar after the culture shock of Pa, and the subject matter of my humor has once again expanded. Apparently, people that spend all of their time traveling the back roads of the country are not easily offended.
I will try to post some pictures, and some links to other Win member blogs. The other blogs may help explain to my family and friends why I just drove 1000 miles to be here.
I am off into an even more remote part of Arkansas, and don't know if I will have cell service or internet. Don't worry, I am among friends.....
Blanchard Caverns
Free music
Campfire
Kayakers
Work in progress
Decorated Kurt
And now..... for the travelogue!!!!!
I am in Arkansas with about 25 other Win's, camped on the banks of the White river. I have been working religiously on my “stress reduction” and rehabilitation. (see attached photos) It has rained nearly every day, which has limited the kayak activities, but not slowed down the other stuff.... BBQ/potluck, campfire, caverns, country music, decorating Kurt, mountain music, dancing, laundry, Walmart, post office, etc...... I know most of these folks from winters in the west. It kind of has the feeling of a reunion, which feels familiar after the culture shock of Pa, and the subject matter of my humor has once again expanded. Apparently, people that spend all of their time traveling the back roads of the country are not easily offended.
I will try to post some pictures, and some links to other Win member blogs. The other blogs may help explain to my family and friends why I just drove 1000 miles to be here.
I am off into an even more remote part of Arkansas, and don't know if I will have cell service or internet. Don't worry, I am among friends.....
Blanchard Caverns
Free music
Campfire
Kayakers
Work in progress
Decorated Kurt
Tuesday, April 28, 2009
April 28, 2009
NOTE, My medical adventure is on hold for a while, well, there is the “stress relief thing, but regardless, this blog may morph into a travelogue for a time. Maybe not though, I might be too busy. I have noticed the most remarkable thing..... I am enjoying writing these little blurbs, (pause for a moment for my school teachers and classmates to regain their composure). I would have thought this to be the least likely result of my situation. For now, it is an interesting solo activity that can be done from anywhere on the planet..... we will see if this endures.
Well, I arrived safely in Mountain View, Arkansas..... the campground is really beautiful, and the Win's are beginning to gather. Just a few at first, but expect around 40 by Wed. Life is about to get busy. The activities planned for this week would fill about 2 months of any normal life, but is just “business as usual” for this energetic outfit. I discovered many years ago, that I am just not a self starter when it comes to leisure activities, maybe a result of the physical work in which I was usually involved. I also discovered years ago, if you are bad at something that needs to, or wants to be done, find someone who is good at it, and hire them, befriend them, or just follow them around.... seems simple, but took me years to figure it out.
Oh yeah, TRAVEL TIP..... If invited as the “guest of honor”, don't go, I repeat, don't go to a “banjo party” anywhere near the Ozark mountains. What Erv and Orville had planned was just completely out of the question, although, upon reflection, it wasn't much different than what I have been paying the doctors and nurses to do.
When I realized what was intended, I got very nervous until I realized that, though there were two of them, I controlled more IQ points than they did, and thus, had the advantage. I first made them nervous by telling them that the “swine flu” was an STD, and that, depending on their recent activities, should seek medical attention ASAP. I then made my escape when they let me go into my rig to get more beer, and some naked pictures of Sarah Palin. (Sorry about that last item, but I was desperate. I apologize to republicans, and decent mountain folk everywhere.)
Well, I arrived safely in Mountain View, Arkansas..... the campground is really beautiful, and the Win's are beginning to gather. Just a few at first, but expect around 40 by Wed. Life is about to get busy. The activities planned for this week would fill about 2 months of any normal life, but is just “business as usual” for this energetic outfit. I discovered many years ago, that I am just not a self starter when it comes to leisure activities, maybe a result of the physical work in which I was usually involved. I also discovered years ago, if you are bad at something that needs to, or wants to be done, find someone who is good at it, and hire them, befriend them, or just follow them around.... seems simple, but took me years to figure it out.
Oh yeah, TRAVEL TIP..... If invited as the “guest of honor”, don't go, I repeat, don't go to a “banjo party” anywhere near the Ozark mountains. What Erv and Orville had planned was just completely out of the question, although, upon reflection, it wasn't much different than what I have been paying the doctors and nurses to do.
When I realized what was intended, I got very nervous until I realized that, though there were two of them, I controlled more IQ points than they did, and thus, had the advantage. I first made them nervous by telling them that the “swine flu” was an STD, and that, depending on their recent activities, should seek medical attention ASAP. I then made my escape when they let me go into my rig to get more beer, and some naked pictures of Sarah Palin. (Sorry about that last item, but I was desperate. I apologize to republicans, and decent mountain folk everywhere.)
Sunday, April 26, 2009
April 26, 2009
I am writing this entry from southern Missouri, about 150 miles from my destination in Mountain View, Arkansas. High winds, blowing dust, heat, and fatigue stopped my progress, and landed me here at the red neck RV park in search of electricity for air conditioning. Just a minuet, there is someone at the door.... is that banjo music I hear?
Let me back up a bit..... I got the pathology report on Fri, and all of the samples tested negative for carcinoma. Very good news. The Doc. went in and scraped around the edges of the craters (his word) that resulted from his last fantastic voyage into my bladder, in order to see if there was any invasion that had been missed. He must have done a great job last time.
I had already been feeling better physically, and this report gave me an emotional lift as well. I start BCG treatments on June 3, and continue every wed. for 6 weeks.
I took stock of the situation, and, in a rare moment of great clarity, realized that this was the perfect storm. I felt pretty good, my friends were in Arkansas playing in the water, I had 3 weeks free, I am still unattached, I have a kayak, a motor home, and a credit card. So, I connected the dots, did the math, saw the writing on the wall, and here I am.
I have to be back for an appointment in DuBois on the 18th, so I will spend about 3 weeks working diligently on a major component of my recovery, reduced stress...... No really, all of the books talk about it.
I have been invited to a “banjo party” tonight, whatever that is, they did say that I was going to be the “guest of honor”. If I survive, I will try to post updates on my stress level semi regularly.....
Let me back up a bit..... I got the pathology report on Fri, and all of the samples tested negative for carcinoma. Very good news. The Doc. went in and scraped around the edges of the craters (his word) that resulted from his last fantastic voyage into my bladder, in order to see if there was any invasion that had been missed. He must have done a great job last time.
I had already been feeling better physically, and this report gave me an emotional lift as well. I start BCG treatments on June 3, and continue every wed. for 6 weeks.
I took stock of the situation, and, in a rare moment of great clarity, realized that this was the perfect storm. I felt pretty good, my friends were in Arkansas playing in the water, I had 3 weeks free, I am still unattached, I have a kayak, a motor home, and a credit card. So, I connected the dots, did the math, saw the writing on the wall, and here I am.
I have to be back for an appointment in DuBois on the 18th, so I will spend about 3 weeks working diligently on a major component of my recovery, reduced stress...... No really, all of the books talk about it.
I have been invited to a “banjo party” tonight, whatever that is, they did say that I was going to be the “guest of honor”. If I survive, I will try to post updates on my stress level semi regularly.....
Thursday, April 23, 2009
April 23, 2009
Just a quick note..... GOOD NEWS...... My Doc. just called, and recommends that I go forward with the attempt to salvage my bladder. I haven't seen the pathology report yet, so I don't yet have all of the details. He recommends a series of 6 BCG treatments, spaced 1 week apart, starting near the end of May. Then, 3 months later, a “poke and peek” to check for cancer, if clear, then a look see every 3 months for a couple of years. If not clear, or the cancer returns later, then the bladder has to go.
It is not a perfect prognosis, but could be so much worse. To give myself the best chance, I think that I will have to change my diet and lifestyle..... more fruits and vegetables, and less stress. Wish me luck.
It is not a perfect prognosis, but could be so much worse. To give myself the best chance, I think that I will have to change my diet and lifestyle..... more fruits and vegetables, and less stress. Wish me luck.
Wednesday, April 22, 2009
April 22. 2009
I am back in Clearfield, safely wrapped in my rolling cocoon. My surgery on Monday went about as expected, and the aftermath seems less severe than that of the last surgery. They took some more chunks of me to send off to the pathology pros, and had us stay over so my catheter could be removed on Wed. Before we could leave, I had to prove that I could pee...... talk about performance anxiety. LOL
My Doc. has lowered expectations for bladder retention to 35%...... Apparently there are risk factors in play other than the T1 staging, and the pathology report will provide enough information for some major decision making. I remain horrified at the prospect of life with no bladder.
There were some interesting encounters at the pre-op stage of the proceedings. In the first room, you get into one of those stylish little gowns, the nurses ask 20 questions, and they make you give up all of your stuff..... including glasses. Then they tell you that you will have to sign the consent forms after they take you down to the next pre-op room. I am sure that those of you who know me know what comes next. Very politely, I raised the question of reading the forms before signing...... Oh, don't worry, they will explain the forms.... My opinion repeated..... Oh yes, the forms will say that you have read and understand what is in the forms..... My opinion repeated..... But, this our policy, is the way we always do it..... My opinion repeated..... No one else complains. I turn to my sister, who, oddly enough , has a pained look on her face, and say “please be a witness to this conversation”. Time passes, nurses come and go..... and then they say “you can take your glasses”. OK, I know that it is a small victory, but it is something. The anesthesiologist let me cross out the “others” that can preform “medical procedures” as well, he laughed and said ”that shouldn't be in there”.
I am not good at accepting the absurd, and fear that I am the only one. For me to be branded as “difficult”, others must blindly go along with the foolishness. It is likely that I will never understand.
I find myself waiting for things to get back to normal, and then realizing that things will never get back to normal. Guess that I will be adjusting to a “new” normal, others manage it, so I suppose that I will as well. I am reminded of something that I read..... “Life isn't about waiting for the storm to pass, it is about learning to dance in the rain.”
Special thanks to my sister Peg..... already the busiest person that I know, spent 3 days in Pittsburgh with me. Thanks also to my brother in law Tim, who filled in for Peg while she was gone.
My Doc. has lowered expectations for bladder retention to 35%...... Apparently there are risk factors in play other than the T1 staging, and the pathology report will provide enough information for some major decision making. I remain horrified at the prospect of life with no bladder.
There were some interesting encounters at the pre-op stage of the proceedings. In the first room, you get into one of those stylish little gowns, the nurses ask 20 questions, and they make you give up all of your stuff..... including glasses. Then they tell you that you will have to sign the consent forms after they take you down to the next pre-op room. I am sure that those of you who know me know what comes next. Very politely, I raised the question of reading the forms before signing...... Oh, don't worry, they will explain the forms.... My opinion repeated..... Oh yes, the forms will say that you have read and understand what is in the forms..... My opinion repeated..... But, this our policy, is the way we always do it..... My opinion repeated..... No one else complains. I turn to my sister, who, oddly enough , has a pained look on her face, and say “please be a witness to this conversation”. Time passes, nurses come and go..... and then they say “you can take your glasses”. OK, I know that it is a small victory, but it is something. The anesthesiologist let me cross out the “others” that can preform “medical procedures” as well, he laughed and said ”that shouldn't be in there”.
I am not good at accepting the absurd, and fear that I am the only one. For me to be branded as “difficult”, others must blindly go along with the foolishness. It is likely that I will never understand.
I find myself waiting for things to get back to normal, and then realizing that things will never get back to normal. Guess that I will be adjusting to a “new” normal, others manage it, so I suppose that I will as well. I am reminded of something that I read..... “Life isn't about waiting for the storm to pass, it is about learning to dance in the rain.”
Special thanks to my sister Peg..... already the busiest person that I know, spent 3 days in Pittsburgh with me. Thanks also to my brother in law Tim, who filled in for Peg while she was gone.
Friday, April 17, 2009
April 17, 2009
The good news..... My heart is OK. (normal?) I am not sure of the details, but I got that phone call.
More good news, I am happy to report that my energy returned last Friday at 10:00 AM, what a relief, thought it might be gone forever. I guess that it was those drugs that I used on my last trip to Pittsburgh. I am going back to Pittsburgh on Monday, and I fear that I will fall prey to the temptation again.....
My research is yielding a better understanding of the situation, still confused, but better. I find that it is all about the statistics..... Oh yes, there are lots of studies, and lots of statistics.
My cancer is ….. invaded the first layer, but not the muscle, T1, invasive type, high grade G3.
Non muscle invasive bladder cancer = 92% - 98% 5 year survival. Turns out that is for “superficial”, as in not invaded any layer, not high grade. Guess that I was a bit optimistic when I jumped on that number.
20% chance that the cancer was “understaged” (thought to be at a lower stage than it actually is, non muscle invasive Vs muscle invasive)
High risk, non muscle invasive T1, G3, with 70% - 80% involvement of the bladder = 80% - 100% chance of recurrence.
Early removal of the bladder, T1,G3 = 78% survival at 10 years. (Cancer related only)
Deferred removal of the bladder T1,G3 (after failed treatments) 64% survival at 10 years.
Treating my cancer, (0-20% chance of non-recurrence) while trying to save my bladder could cost me 14 percentage points in 10 year survival.
It kind of adds up to a roll of the dice......
It is clear, that this illness has invaded my brain, or at least my thoughts..... I have tried to put it out of my mind, but failed. It may be human nature (kind of a natural selection thing) to think about and be concerned with those things that present the largest threat or reward. I guess that I need to see this as a fact, and accept it as one of those things that I cannot change. My experience with this seems to mirror others in my situation. I am told that the only answer is time.... Well OK, cancer free time.
It occurred to me that all of this doesn't mean that I have to be morose all of the time, do what I need to do about my illness, and then focus on living..... “the best years of my life”....... Really, none of us are assured of living 10 years, or for that matter 10 minuets..... Who knew that I would have to master philosophy as well as medicine and insurance law.
Be careful what you wish for, I always wanted an interesting life.......
More good news, I am happy to report that my energy returned last Friday at 10:00 AM, what a relief, thought it might be gone forever. I guess that it was those drugs that I used on my last trip to Pittsburgh. I am going back to Pittsburgh on Monday, and I fear that I will fall prey to the temptation again.....
My research is yielding a better understanding of the situation, still confused, but better. I find that it is all about the statistics..... Oh yes, there are lots of studies, and lots of statistics.
My cancer is ….. invaded the first layer, but not the muscle, T1, invasive type, high grade G3.
Non muscle invasive bladder cancer = 92% - 98% 5 year survival. Turns out that is for “superficial”, as in not invaded any layer, not high grade. Guess that I was a bit optimistic when I jumped on that number.
20% chance that the cancer was “understaged” (thought to be at a lower stage than it actually is, non muscle invasive Vs muscle invasive)
High risk, non muscle invasive T1, G3, with 70% - 80% involvement of the bladder = 80% - 100% chance of recurrence.
Early removal of the bladder, T1,G3 = 78% survival at 10 years. (Cancer related only)
Deferred removal of the bladder T1,G3 (after failed treatments) 64% survival at 10 years.
Treating my cancer, (0-20% chance of non-recurrence) while trying to save my bladder could cost me 14 percentage points in 10 year survival.
It kind of adds up to a roll of the dice......
It is clear, that this illness has invaded my brain, or at least my thoughts..... I have tried to put it out of my mind, but failed. It may be human nature (kind of a natural selection thing) to think about and be concerned with those things that present the largest threat or reward. I guess that I need to see this as a fact, and accept it as one of those things that I cannot change. My experience with this seems to mirror others in my situation. I am told that the only answer is time.... Well OK, cancer free time.
It occurred to me that all of this doesn't mean that I have to be morose all of the time, do what I need to do about my illness, and then focus on living..... “the best years of my life”....... Really, none of us are assured of living 10 years, or for that matter 10 minuets..... Who knew that I would have to master philosophy as well as medicine and insurance law.
Be careful what you wish for, I always wanted an interesting life.......
Thursday, April 9, 2009
April 9, 2009
There is not much to report... An “echo” test for the heart, turns out, is an ultrasound of the heart. Takes about 15 min. It was interesting, watching your heart beating on the screen, but of course, no results yet.
My next “poke and peek” (affectionate term used by those in the bladder cancer community... who knew that there was such a thing) is scheduled for April 20. My sister Peggy and I will again head for Pittsburgh on Sun. afternoon, and try to stay at one of the family houses affiliated with UPMC. They are really quite nice, inexpensive, and have everything that you need. Well done UPMC
Internet research continues.... still productive, and still depressing. I am convinced that, making the best decisions will get the best result, and understanding the process is necessary. It seems that if, on the first day, the Doc's told you everything that was coming, suicide statistics would rise dramatically. It takes a while to wrap your mind around the whole situation, and it is probably best to discover things slowly.
Fact of the day..... bladder cancer “ has the highest lifetime treatment costs per patient of all cancers”. Guess I better cut back on my lavish lifestyle, LOL, and make sure that I don't miss an insurance premium payment. I am thinking of becoming a democrat, and pushing for national health care... who thought that could ever happen. Oh well, desperate times call for desperate measures. LOL
On the emotional front, I think that I have contracted a phobia.... fear of latex tubing, and rubber gloves. I predict years of expensive therapy. Seriously, as bad as things are, they could be so much worse..... right now, my situation is not very life threatening (92% - 98% survival at 5 years). I try to remind myself, that when first diagnosed with cancer, I would have traded all expendable organs to be in this position. Perspective is essential.
Once again, thanks to all family and friends that are helping me to remain on track.
My next “poke and peek” (affectionate term used by those in the bladder cancer community... who knew that there was such a thing) is scheduled for April 20. My sister Peggy and I will again head for Pittsburgh on Sun. afternoon, and try to stay at one of the family houses affiliated with UPMC. They are really quite nice, inexpensive, and have everything that you need. Well done UPMC
Internet research continues.... still productive, and still depressing. I am convinced that, making the best decisions will get the best result, and understanding the process is necessary. It seems that if, on the first day, the Doc's told you everything that was coming, suicide statistics would rise dramatically. It takes a while to wrap your mind around the whole situation, and it is probably best to discover things slowly.
Fact of the day..... bladder cancer “ has the highest lifetime treatment costs per patient of all cancers”. Guess I better cut back on my lavish lifestyle, LOL, and make sure that I don't miss an insurance premium payment. I am thinking of becoming a democrat, and pushing for national health care... who thought that could ever happen. Oh well, desperate times call for desperate measures. LOL
On the emotional front, I think that I have contracted a phobia.... fear of latex tubing, and rubber gloves. I predict years of expensive therapy. Seriously, as bad as things are, they could be so much worse..... right now, my situation is not very life threatening (92% - 98% survival at 5 years). I try to remind myself, that when first diagnosed with cancer, I would have traded all expendable organs to be in this position. Perspective is essential.
Once again, thanks to all family and friends that are helping me to remain on track.
Friday, April 3, 2009
April 3, 2009
Well, I had an interesting visit with Dr Lang on Tues..... He is a GP that has been the family Dr. for my sister and BIL for years. I went to him primarily for my pre-op examine for my April 20 surgery and a referral to a GI specialists for an over due colonoscopy. After all, why let the urologist have all of the fun. Lol The visit was unremarkable except for the heart murmur that he noticed.... It just keeps getting better..... Anyway, I am scheduled for an echo examine of the heart on Monday April 8. The doc. seems to think that it is no big deal, hope that he is right.
This week, I have been on the net gathering information regarding various bladder cancer treatments. After all, I spend hours researching what solar panel to use, or what light bulb is best. I really should learn as much as possible about my illness, as this is at least, a life changing situation, and at worst, a life threatening situation. I found lots of information, but I noticed that it left me a bit depressed. I am finding that studying about cancer really reinforces the fact that I am sick, and I start to identify with that side of me. I have to believe that feeling sick and depressed is counterproductive in this struggle. Maybe educating myself is the same as everything else in this bad dream...... debilitating, but necessary. I wonder how long the recovery period is for a couple of days on the internet. Maybe there is an educational protocol..... one day of research, followed by four days of dinners out, dancing, and walks on the beach.
Sometimes I am able to be grateful that things are not worse, focus on being alive, and make plans for the future. After all, I still seem to have a future at this point. Half full, or half empty.....hmmmm there is question that deserves some thought.
I don't mean to whine, but in truth, I am on an emotional roller coaster, and I suppose that it is only fair to reveal that side as well.
This week, I have been on the net gathering information regarding various bladder cancer treatments. After all, I spend hours researching what solar panel to use, or what light bulb is best. I really should learn as much as possible about my illness, as this is at least, a life changing situation, and at worst, a life threatening situation. I found lots of information, but I noticed that it left me a bit depressed. I am finding that studying about cancer really reinforces the fact that I am sick, and I start to identify with that side of me. I have to believe that feeling sick and depressed is counterproductive in this struggle. Maybe educating myself is the same as everything else in this bad dream...... debilitating, but necessary. I wonder how long the recovery period is for a couple of days on the internet. Maybe there is an educational protocol..... one day of research, followed by four days of dinners out, dancing, and walks on the beach.
Sometimes I am able to be grateful that things are not worse, focus on being alive, and make plans for the future. After all, I still seem to have a future at this point. Half full, or half empty.....hmmmm there is question that deserves some thought.
I don't mean to whine, but in truth, I am on an emotional roller coaster, and I suppose that it is only fair to reveal that side as well.
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