Johns latest adventure

December 26, 2011

2011-12-26T23:45:00.000-05:00

It has been a while since my last post, but I was waiting for the results of my yearly cancer scan on Dec. 20 ......... All clear, no signs of cancer. What a relief. For those of you who haven’t ever had any issues like this, it may seem like a small thing, but for me, it is huge. The longer you go without cancer returning, the better chance you have that it never returns. I always have “high anxiety” leading up to doctors appointments, but these yearly scans feel like a very real session of russian roulette.

Another bit of good news..... My insurance company, you remember Health Net don’t you, has finally paid UPMC for my surgeries back in the spring of 2009. This was not just “the insurance company doing the right thing”, but is what happened after my attorney threatened to start arbitration proceedings. (They paid my attorney as well,) I signed a non disclosure agreement, and am not sure exactly what I can say, but I am pretty sure that I can report things that happen regarding my health care bills........... My credit report should show that the “collection account” has been paid, however, it doesn’t go away, and will still reflect negatively on my score.

Speaking of credit scores, I wish mine was better.....

I was able to buy another rental house last month, and am now doing all of the normal clean up, fix up stuff that foreclosed houses need. The rent from this house will nearly fix my monthly cash flow problem.

I would buy many..... except, I am out of money, and no longer qualify for financing.

Enough with the whining..... It has been a long 3 years, but things are going very well, and life seems to be returning to some kind of normal.

Wishing all of you a great holiday season, and the best in 2012.

October 11, 2011

2011-10-11T21:51:00.001-04:00

Wednesday the 12th is the 2 year anniversary of my neo bladder. My, how time flies. I have to say that it is working as well as can be expected.... not as good as the original equipment, but much better than the alternative.

I am mostly healed from the last surgery, but there is still a large pocket of fluid that needs to be dealt with. I made several attempts to drain the fluid, but didn’t have much success. The doc may have better tools, but it may be something that I have to live with.

This post is full of “good news”, bad news” stories, so don’t get depressed during the “bad news” parts.

At the end of August, I could no longer afford my medical insurance... I needed to go 6 months without insurance to qualify for the affordable, federal, “high risk” insurance pool, and it seemed like a good time to start the clock ticking. Uninsured, scary, but necessary.

I was also falling behind in my finances.... too many bills, not enough income, credit cards nearing their limits. SSDI had denied my disability claim again, and estimated 12 -18 months for a hearing date. Despondent and depressed.....

Then.....as if by magic, a buyer materialized for a property that I had owned for over 20 years. 2 ½ acres “out in the country”.... a place where I lived, off and on (mostly during domestic reorganizations) in the motor home, and a place for many parties and BBQ’s. A lovely place, paid for, but not income producing. The RE market around here is at a 20 year low. I was sad to sell, but happy for the little bit of money that the sale created. BUT WAIT, THERE IS MORE..... this is probably the only time in recent history that the money from the sale of this property, is enough to buy a modest rental house. More income, a very good thing.

The sale closed on Friday, Sept. 30, what a relief... doing a small but sincere happy dance. I could now pay some bills, and stop worrying for a bit.

Monday afternoon, in the mail, from SSDI..... YOUR CLAIM HAS BEEN APPROVED. Based on a letter from my doctor, they decided, without a hearing, that I would not be able to do construction work, and my skills would not qualify me for a sedentary job. So, I get a trickle of money, (most of my income for the last 20 years has been Capital Gains, not Earned Income), and Medicare..... I can now afford to be sick again... Woo Hoo...

I also get back payments from August 2009. After paying the attorney, there will still be enough to get caught up, and have a bit for a rainy day fund.

There were so many times that I felt like giving up, I cannot describe the relief.

I pondered whether to include my financial information in this blog, and decided that financial and emotional issues are a huge part of my “cancer” story, and needed to be included.

August 26, 2011

2011-08-26T15:39:00.000-04:00

Hi all,

Sorry for the long space between posts, but I wanted to wait until I felt a bit optimistic.

I am now finished with the 2nd phase of any major medical event.... the aftermath. It is when the excitement is over, and the dust has settled.... nothing to see here folks, move along.... The anxiety and apprehension are gone, and I am left with pain, drugs, tubes, drains, staples, limited activity, etc..... This has happened after every surgery, so it is no big surprise, but still was annoying, and a bit debilitating.

I woke up Monday morning with just a little energy, and have been feeling a little better each day. I can’t describe how good it feels to wake up feeling something beside doom and gloom. When trapped in that mind set, it seems that there will never be a light at the end of the tunnel, and that life will never be anything but a never ending struggle to survive.

I have been averaging 2-3 surgeries per year, and each of them sets off a couple of months of “no energy to do anything but the absolutely necessary”. Each time, when I start feeling better, I am faced with a stack of undone chores, that take several months to get through.

Don’t want to spend too much time complaining, but definitely a sisyphean situation. In this situation, self employment is a curse. My financial situation begs me to be optimistic, innovative, energetic, and decisive, and suffers when I fail to live up to those ideals.

On the medical front, I have seen my doctor 3 times since the surgery on July 8, and am now happily tubeless. I am restricted, for ever, to lifting no more than 20 lbs, and only that if it doesn’t hurt. I am pleased to find out, according to SSDI, that this is not the least bit disabling.

Anyway, I hope that I have turned the corner on medical issues, and can focus on living life.

Ideas for my first book....“YOU MIGHT BE OLD AND SICK IF”

You look at health care options on the internet instead of porn.

You are a stranger at the bar, but the girls at the pharmacy know your name, phone number, and date of birth.

Your friends avoid asking “how are you doing”.

July 13, 2011

2011-07-13T19:51:00.000-04:00

Hello all, I have once again survived the much maligned american health care system, and would like to report that they did an outstanding job of caring for me. Actually, I don’t think that it is a question of “quality of care”, but who pays for the care that is at issue. I had a 3 ½ hour surgery to remove the hernia repair mesh that was installed in Sept. Of 2010. Apparently the surgery was uneventful, and the mesh was removed.

This s procedure was not done by my cancer surgeon, but by another surgeon on his team. I am guessing that this is covered by the “medical acts” by “others” clause in the paperwork. I really don’t have any problem with this as this was fairly routine, and to have the specialists do this, would be a misuse of talent. I did know this other Dr, and had a lot of confidence in him.

Maybe because of personal choice, or perhaps some compelling medical reason, but instead of hidden, disappearing stitches, I now have 35 stainless steel staples holding me together. It should make for an interesting, frankensteinening type scar. I also have 2 drain tubes attached to 2 grenade looking reservoirs. I hope to have the staples and drains removed next Wed. at my follow up dr. appointment.

My body had a severe adverse reaction to the mesh, had built a “orange peel” like shell around it, and had continued to flood the area with fluid. The new information discovered is, that my body wall beneath the mesh had never healed, and there was still a large hernia present.

The surgeon closed the hernia by stitching my abdominal muscles (body wall) together with material that will not dissolve, but will remain in place. The hope is that things will heal, and I will remain hernia free.

That was the good news.... the bad news is... I was admonished by the doctors to not lift anything over 5 pounds for the next 6-8 weeks, and never, ever again lift anything heavy. (For those that are metrically challenged... a gallon of milk weighs 8 pounds, and bowling is out of the question) He suggested a “weight lifters” belt might be of some benefit.

The connection between my abdominal muscles is very fragile, and will never improve. I asked about my options if I were to lift too much and cause another hernia.... and the Doc said..... DO NOT DO THAT, THERE ARE NO GOOD OPTIONS.

I am trying to adjust to the reality of being an invalid that doesn’t look like an invalid. How do I present myself to the world, looking healthy, and still asking others to carry my groceries. My friend Carl, suggested that, to make the picture make sense, that I put a 2 inch lift in one shoe, get a cane, and walk with a limp.....

I am not happy with my “new normal” but am still happy to be alive, and would make the same decisions again if given the chance. At least for now, I am trying to go with the “glass is half full” approach.

Once again, I am thankful and humbled by the response of my family and friends. I am particularly indebted to Karen, who did all of the necessary, un-fun things required to get me through this event.

June 22, 2011

2011-06-22T18:13:00.000-04:00

The countdown has begun..... Fri. July 8, 2011, I am having surgery to remove the hernia repair mesh. From an anxiety standpoint, I am glad that it is happening so soon, however, I have at least 4 weeks worth of things to get done between now and then. I hope that the time will go quickly, and that life can get back to some kind of normal soon.

June 20, 2011

2011-06-20T16:35:00.002-04:00

Here it is, the longest day of the year.... Time goes by in a blur.

I have decided that the abdominal mesh, that was installed to fix my hernia, must be removed. My body, that didn’t mind cancer setting up shop in my bladder, is continuing to fight a winning battle against the mesh that is holding me together. Misplaced priorities for sure.

My conversation with the surgeon gave me no new information, but did re-enforce what I already knew. (I had spent much time reading the accounts of people with the same problem)

Without the mesh, there is a danger of another hernia. For those of you that don’t know, a hernia is a separation of the body wall/muscle. This condition causes your internal organs to push out due to gravity, or under any strain on the abdominal muscles.

This is bad enough for someone with normal plumbing, but ads an extra degree of difficulty for someone like me. First, my bladder is not a muscle, and urination is only possible by contraction of the abdominal muscles... picture the effort required to overcome moderate constipation. Second, my bladder does not shrink like a balloon as urine is voided, it just deflates like an empty plastic bag.

For these reasons, it is necessary for my abdominal muscles to work properly, and for my abdominal organs to remain carefully contained in proper order. If my neo-bladder becomes displaced or distended, it could mean a lifetime of catheters, or worse.

The punch line to all of this is..... after the removal of the mesh, there is no way to gauge the amount of strain that my abdominal muscles will stand with out another rupture. It will be OK until it isn’t, and.... there is no good fix if there is another hernia.....

I guess that I have been a bit spoiled in my expectations, It is hard to believe that they could fix the deadly cancer that was trying to kill me, and are now stumped with a little problem of a hernia.

I have had trouble with authority my whole life. I was never OK with someone telling me “NO”. Now, my body is in charge of what I can do, and what I can’t do. There is no way to run away from this strict master.

The bad part of this is obvious..... the good part is that I am currently cancer free, and still here to bitch about things that are less than perfect.

April 29, 2011

2011-04-29T10:58:00.000-04:00

Ok, It has been too long since I posted here. I try to wait until I feel good to post..... lets just say that I just couldn’t manage to get it done.

I got my drain out a few days before leaving for my annual trip to Pa, to visit my family. I had high hopes of being healed, and able to return to some kind of normal life, but, was disappointed again.

It seems that my body will not accept the repair mesh, and has continued to flood the area with liquid. In this incarnation, the liquid has been encapsulate, and has formed a firm, hand size bulge at the site of the original operation. (Certainly not the place that I would choose to add a couple of inches.) There are pockets of liquid in the area surrounding the bulge. In addition, I have lost feeling in the affected area.

All of that is bearable, and possibly livable. The main problem is..... when I do any lifting, or repetitive movement, the edge of the mesh begins to detach, and causes pain. The more that I do, the more pain I get.

The doctor says that there are two options: learn to live with it, or have the mesh removed. If the mesh is removed, there is always the possibility of another hernia in the now weak abdominal muscle.

Neither of these appeal to me. I can hardly imagine life with such limited activity, and the pain is sometimes not manageable without narcotics. Another operation seems equally untenable, especially one that could result in ongoing problems.

I know that “it could be worse”, and that “am lucky to be alive”, etc. I know that there are people with bigger problems than mine, and that I should learn to accept things as they are. I try to keep things in perspective, but am not having much luck lately.

I feel a bit selfish going on and on about my troubles..... My father passed away at the end of March, and my mom is now without her husband of 62 years.

I am sorry for the dreary post, but hope to do better next time.

March 4, 2011

2011-03-04T08:16:00.001-05:00

The drain is gone.... Woo Hoo..... I tried to pull the miserable thing out, but gave up because of the pain, and for fear of doing serious damage. It felt like the thing was wrapped around some important body part, and I didn’t know what I would do if I managed to yank my spleen out.

My doctor is in the heart of Los Angeles, about 80 miles away, much of it in heavy traffic. When I got there, I was told that the doc. had just gone into surgery, and would be there for some time....
Some delay earlier in the day causing traffic to back up in the OR. I could wait for a few hours, or reschedule. Neither being a good option, I decided to wait, but threatened to throw the drain bulb into an elevator and push the button.

Eventually nurse Jacky (her real name, and a really nice lady) came out and told me that the doc. said for her to remove the drain, and so she did. The trick is.... don’t stop pulling when it hurts... LOL

It turns out that the inside part of the apparatus is larger than the outside part. The skin and abdominal wall grow tightly around the tube, making it difficult to remove.

I am very happy to be drain free, although it will take a while to get used to it. I still reach for it when I get into the car, or roll over in bed. I guess that it became like an extra appendage.

I am leaving Monday for 9 days in Pa. visiting my family, so, for once, the timing was perfect.

February 14, 2011

2011-02-14T17:50:00.002-05:00

Well.... The bad news..... I still have the drain coming out of my belly, and it is still acting as a short leash. Where the tube enters is an open wound after all, and dressings need to be changed twice daily along with medications to prevent microscopic creatures from mounting a successful attack. I am still on restricted activity, and need to stay close to my doctor.

The good news...... I am becoming an expert on the operation and maintenance of a JP drain. However, I am fairly sure that this new skill will not land me a high paying job in the health care industry.

The rant that follows is probably more than anyone wants to know about this particular subject, but it is all that I have to report. I am not complaining, but it is an example of some of the disruptive issues that follow a major surgery.... Not life threatening, but quietly overwhelms your plans and cannot be ignored.

This drain is a result of a surgery to repair a problem caused by a surgery to repair a hernia that was caused by my cancer surgery in Oct. 2009.

The drain was originally due to come out 2 weeks after surgery, giving my body a second chance to heal around the mesh that is holding me together. The drain is supposed to prevent a build up of fluid, which, if allowed, prevents the layers of my belly from healing together. Apparently my body still thinks that “mesh” is a foreign object, and is still flooding the area with fluid.

The key, it seems, is the amount of fluid produced. Apparently, the drain tube itself is an irritant, and causes some fluid to be produced. The doc says that we remove the drain when the fluid output is reduced to 30 ml per day. Currently, I am producing between 40 and 50 ml per day, down from 50 to 70 ml per day 3 weeks ago.

At first, the drain tube was stitched into place with a fairly heavy duty thread. My body was trying to expel the foreign object, but the stitch held fast. At about the 3 week mark, the thread deteriorated and let go. I managed to keep the tube in place with careful use of various tapes. The trick, I found is to find a tape that holds, but does not remove skin when removed.... It is a delicate balance to say the least.

For those of you still reading.... there is a punch line ahead.

My plan, now that we are into a new year of deductibles, was to wait for the proper time, pull the drain out, declare that it happened while sleeping, and save myself the cost an office visit.

While working on a clog, (a fairly common problem) I was trying to work the tube in and out a bit to help clear it, but it wouldn’t budge. I discovered that my body, though it seems to repel necessary repair mesh, has embraced the drain tube, and has become one with the tube. It just keeps getting better and better.

I have a call in to the doctor regarding this latest development.

January 8, 2011

2011-01-08T10:43:00.001-05:00

It has been a little over a week since my latest encounter with the American health care system, and I am beginning to feel a bit better. I have a plastic drain tube coming out of my belly attached to a hand grenade looking collection device. Right now, my belly looks like a child’s first attempt at crayon art. This really is not so bad, as I have never been able to profit by my good looks anyway.

It is a little bit painful, and a lot inconvenient. This drain clogs occasionally, (thank goodness I have a background in plumbing) and adds a degree of difficulty to even the simplest of activities. As you might imagine, mens fashion does not really lend itself to concealing this type of apparatus, which adds to the “shock and awe” in public situations.

Unfortunately, my endurance has been missing in action. For me, this seems to be part of the aftermath of general anesthesia.

These things are just added to the long list of “un-advertized specials” that were not in the “cancer as a hobby” brochure. I am not complaining, just pointing out the situation. I realize that the alternative would be worse, but still have an urge to tell the whole story.... This is, after all, a “trip through illness” blog.

It is still too early to assess the success of the procedure, but I will probably know in another week or so.

All of this, of course, has put a serious crimp in my travel plans for this winter.... not to mention a crimp in my plans to live indoors, and eat something other than pet food. I am now trapped by snow, washed out roads, dr. appointments, artificial body plumbing, and the need to start making money. I am currently unable to move my home, and am feeling a bit claustrophobic and vulnerable..... LOL

The need to create revenue is keeping me awake at night. I have some ideas, and will let you all know as soon as I am brave enough to pull the trigger on a new venture.

Even though there are parts of my situation that are not good, (OK, parts are just bad) my energy seems to be returning. Hopefully, this is the key to getting back on track.

December 31, 2010

2010-12-31T13:06:00.000-05:00

Happy New Year you all...... The operation appears to have been a success, and I am currently recovering at Karen's house. I have a drain tube that is scheduled to be removed in 2 weeks. I am still under the influence of narcotic pain meds, and don’t have much energy now. My plan is to do nothing for the next few days.
I am once again thankful for the kindness of my friends.

December 23, 2010

2010-12-23T23:17:00.000-05:00

OK, there is good news and bad news..... the good news, I am going to get my belly fixed on Dec. 29, thus saving a large deductible. The bad news is that I am going to get my belly fixed on Dec. 29, thus being out of commission for the new year celebration.

I am really not feeling chipper right now, so I will keep this short and sweet..... Merry Christmas and a Happy New Year to my family, my friends, and all of my faithful readers.

December 4, 2010

2010-12-05T11:18:00.001-05:00

The best possible news..... Cancer has not returned...... I just had my yearly check up, and received an “all clear”. I do not have to get my affairs in order, and can continue to live my usual disorderly life. I only wish that I could get an “all clear” on my financial check up as well.

It is an unsettling routine... go once a year, to see if you get to renew your lease on life, or get a 12 month notice to vacate your body. Maybe I should start a “bucket list” anyway.

I also found out that I need to go back into the hospital to get my belly fixed. The layers that were separated to install the mesh to fix my hernia, never properly healed. I now have about a gallon of fluid sloshing around between those layers. It is uncomfortable, and is ruining my normally slim figure.

I am going to try to have this done before the first of the year. Jan. 1, I am into a new year of deductibles..... I save a much needed $5000 if they can fit me in this year. Of course, this means that my plans to vacation in Az this winter may need to be abandoned.

Once again, “staying alive” is interfering with “living life”......

November 1, 2010

2010-11-01T12:10:00.002-04:00

Well, it has been quite a while since I posted here. I keep waiting for inspiration, but nothing seems important enough to publish, I guess if I am not traveling or having major medical problems, my life is just boring.

I have just passed my 60th birthday...... officially old. I was gong to say that I don’t feel this old, but that is not really true, I guess it would be more accurate to say that I am surprised to be this old. It seems just yesterday that I was young and tough.... willing and able to do anything. I spent an unusual amount of my time doing dangerous jobs and playing at dangerous hobbies. I had many close calls, some that caused great pain, and some that just made a good story to tell around the campfire. Maybe it is because I have been lucky my whole life, and am surprised when I start to have some of the problems that are expected at this stage of life. I don’t know, maybe everyone feels this way..... however, this is not what I expected.

Another birthday, my neo-bladder is now 1 year old. I am not sure how the time line for this goes, but my new bladder seems to have passed the rebellious and unpredictable stage of youth, and has fallen into line as another hard working organ, doing its part to sustain life. I can't begin to describe how happy this makes me.

I am still having some minor issues with my hernia repair. Trying to lift things like I used to causes setbacks, and am afraid to enter situations that may require abdominal effort. Minor repairs in a vacant rental unit are taking 4 times as long as expected, and I have had to cancel a kayak trip. Going and hoping for the best wouldn’t be fair to the group. Too much too soon, or an imposed change in lifestyle?

In any event, I woke up this morning, and am able to go out and do some useful things. Today it seems so simple, “look on the bright side”, “the glass is half full”. Today, to quote the tee shirt, Life Is Good......

September 16, 2010

2010-09-16T12:22:00.000-04:00

I am so excited, I have something to report...... I am about to settle my dispute with Health Net. Health Net, as you may remember, misled me into getting cancer treatment at an “out of network” hospital, and then refused to pay about $70,000 in charges for 2 surgeries preformed at University of Pittsburgh Medical Center. (This is my side of the argument, theirs is somewhat different.)

HN is not going to pay the bill, but they are going to pay my legal bills to date, defend me in the lawsuit that UPMC will bring against me, and pay any judgement that arises from the lawsuit.

I don’t really see why this is good for HN. I do owe the money to UPMC, (after all, I did sign everything that they put in front of me leading up to the surgery) and they should be able to get a judgment easily. It could be that HN is just using the cost of litigation as a negotiating tool, or just trying to put off payment for a few years.

While this is very good news..... it still leaves me with ruined credit, and having to deal with the legal system for the next couple of years. In any event, this is better than being stuck with the whole bill.

I am making a fairly rapid recovery from my hernia surgery..... I can’t laugh, lift, or cough at this point, but am nearly off of pain meds, and seem to be getting better. I will see where I am after I see the Doc. in a few weeks.

Please join me in a moment of silence for the loss of my navel..... it is not as bad as losing another major organ, but still...... I mean it really didn’t do much except collect lint, but I had it for a long time, and my belly looks a bit empty without it.

September 11, 2010

2010-09-11T12:10:00.000-04:00

Well folks, I have once again survived the US medical system. I am at home, have no tubes coming out of me, all systems are working somewhat normally, and am resting uncomfortably under the influence of dangerous narcotics.

The plan is to feel better and better until this is just a distant memory. I want to thank all of you for you prayers and kind thoughts.

I will try to post more as energy permits.....

August 9, 2010

2010-09-09T20:57:00.002-04:00

Evening! I just wanted to update everyone on how John is doing. He's still in the hospital, although the surgery went well. He may be released tomorrow if he can move around a little more. He's not up to talking on the phone, and hopes everyone understands that he will be ready in a day or so. But he is fine. - Karen

August 8, 2010

2010-09-08T12:51:00.002-04:00

Good morning! John went through his surgery very well, although it was delayed by several hours. He should be going home tomorrow or Friday at the latest. Since he did not get out of recovery until about 8:30 last night, I'm not sure which day it will be. - Karen

September 6, 2010

2010-09-07T00:11:00.000-04:00

OK, Not much to report....... I am entering the hospital Tues. morning at 9:00 AM to have a hernia repaired. They are planning to embed a piece of “mesh” to bind my abdominal muscles together. I have not researched this process at all, but I am told that it is routine.

I do not expect this to be very complicated, or expect to be in there more than 2-3 days. People do this every day, it is just not a big deal. OK, that is what I think..... What I feel is much different, anxiety is seeping out of every pore, and relaxation is totally out of the question. Logic is apparently unable to override the subconscious that remembers the aftermath of the last time that I did something like this...... The problem, it seems, is that the whole dam thing is so totally counter-intuitive. OK, I know that this is the right thing to do, but once again, it feels like I have signed up for a knife fight.

I am never sure if it is helpful to whine about my “feelings”. It seems that it is not very manly, you know, I should be fearless, bring it on, I can take anything, I’m so tough that nothing bothers me.... In most respects, it is really not useful information regarding my medical condition, however, it is part of the whole experience. I do, however, also feel a duty to others that are following this blog, who are in similar circumstances, who need to know that these things can seem ominous and overwhelming. It may be comforting for them to know that others are fearful and undecided, but still get through it ok.

In any event, Karen will be posting updates on my condition on this blog, and I will be making and accepting phone calls as soon as I can kick the upcoming drug habit.

August 24, 2010

2010-08-24T10:07:00.001-04:00

Well, this is another “nothing to report” blog..... I do have a new address, not surprising to “full timers” and Gypsies, but somewhat unusual for normal people to understand. I am now living in town at my vacant lot on Spruce trail. I have a building permit for this lot, and must show progress every year to avoid losing the permit. So..... I put in the septic system, had the water meter turned on, and arranged to buy electricity from the neighbors.... all of the comforts.

I have been mostly stationary, but still have had a busy summer. It has been a surprise to me that nearly every weekend this summer there has been some event going on in Frazier Park, or one of the surrounding communities. Mostly, these have been remarkably well done given the limited resources of a small community. Car shows, wine tasting, theater under the stars, etc, all interesting, fun, and well worth doing. If I didn’t live here, I would want to visit.

My hernia surgery has been rescheduled for Sept. 7... apparently this is routine stuff, but still, I feel my anxiety level rising..... I guess that it is a bit Pavlovian.

My plan is to spend Oct and Nov. Healing and catching up on paper work, and be ready to travel by winter......

July 29, 2010

2010-07-29T11:39:00.002-04:00

Well, it has been a while, and I keep waiting to be inspired..... I think that really good blogs require some emotional energy behind them. OK, that is not happening, but I want to let everyone know that I am alive a kicking, and I do have a bit of new information

I started this year with some huge problems to deal with, and now it seems that most of these are either solved, or about to be solved. This is great news.... but I find myself unprepared for “life after problems are solved”.

Historically, I consider the future, think about it from time to time, and let the back of my brain mull things over. Just keep adding information, and at some point, various plans begins to take shape, and are slowly refined and revealed as events unfold. I never really decided on this methodology, it just evolved. For most of my life, this has been my “mode of operation”, and has proved to be a fairly reliable way to run my planning department. (OK, I know that many of you could dispute this, and this method has produced some colossal mistakes, but it is all that I have.)

This year, my system has failed. For understandable reasons, I focused on the immediate issues, and spent no time or energy considering the future. As the big issues got resolved, I felt a great sense of relief, but found myself without a plan. Now it seems that I am wandering in circles, dazed, depressed, and disoriented.

Currently, I am scrambling to catch up with hundreds of small issues that have accumulated over the past year and a half, and am trying to formulate a reasonable plan for the next few years. Organized thinking, researching, and planning.... all are somewhat foreign to me.

There is another “fly in the ointment”....... the muscles in my abdomen have pulled apart at the site of my surgery. This allows my insides to bulge into the outside, and must be repaired surgically. The plan is to reinforce the area with some kind of fabric mesh.... as I understand it, this is a fairly common fix for a fairly common problem. This procedure is scheduled for Sept. 8, and will mean a few days in the hospital.

So, here is the problem..... Most of my income has come from activities that involve heavy lifting, and it is uncertain if I will ever be 100% again. I am not sure that I can ever again do the work that I am used to.

So, with the RE crash and my body falling apart, clearly, I need to find a new way to fund my lifestyle. I have some ideas, but, you know how it is with old dogs and new tricks.....

July 10, 2010

2010-07-10T11:53:00.007-04:00

Life in Frazier Park continues..... I am scrambling to catch up with hundreds of small and medium issues that have piled up over the last year and a half.

I joined some friends the weekend before last, to go kayaking and camping near June Lake, Ca. We paddled Gull lake and Silver lake, toured Bodie (probably the best ghost town in the country), and visited the museum in Lee Vining.

Probably the most interesting thing that happened was a chance encounter on the rough dirt road to Bodie. We came across a pair of motorcyclists that were towing small trailers, and were traveling from San Diego to Oregon and back. One of the trailers had a broken axle, and they were asking passers by if they had a hacksaw.

Lou, a McGiever clone, had a hacksaw in his truck, so we stopped to help. A road side T-post (apparently placed there to help broken down bikers) was used as a splint. It was held in place with 2 hose clamps (donated by Lou), some rope and an extra tie down strap (supplied by me), and...... wait for it....... duct tape (donated by a passing cowhand). They were going to make better repairs when they got to Bridgeport.

As we all know, but tend to forget sometimes..... It feels good to get a little dirty, and do a good deed.

Under the category of “small world”...... I saw the same group at the mini mart in Frazier Park on July 2. They were on the way back to San Diego, and you guessed it, the jury rig repair was still in place. They said that it worked well, and would be repaired when they reached home.

Click on the pictures for a better view.

16 campsites
One of two that could accommodate a 36 ft. MH
In spite of the trees, I still had satellite internet and TV

Silver Lake

Broken trailer up on lift

Broken axle

Preparing the axle graft

Repaired axle, ready to travel 2000 miles

Bodie

One of the nicer houses

Paula and Karen at the Methodist church

June 14, 2010

2010-06-14T09:58:00.011-04:00

This week finds me mostly healthy and happy.

Once again an interesting weekend, and of course, once again I forgot the camera. But being the resourceful guy that I am, I imposed on my friend Carl to record the grand event.

The event was the wedding (yes, some people still get married) of my friends Kelly and Ellie.... Do not stop reading here!! It is not like a slide presentation of a family reunion.

The wedding was held at a friends (a very remarkable couple) house near the top of an 8000 ft. mountain.... 4 miles of dirt road, 3000 ft. elevation gain, way off of the grid, solar powered, and all self contained. As you might guess, snow plays a leading role in "Life on the Mountain". The pictures will speak for themselves. (Click on the pics. for a better view)

The ceremony, and a view of Lockwood Valley.... My land is located in the small clear area at the upper, center of the picture. Frazier park is to the left of the tree. (In true Frazier Park style, Kelly chose to go with casual dress)

View of Cuddy Valley, and the comunity of Pinion Pines (West of Frazier Park, at the center of Pic.)

View of the house from the East

View of house from the South

Solar power.... over 2000 watts

Very serious snow plow

8 wheel drive!!! actually rides on top of the snow

And me

All in all, it was a perfect day..... the ceremony lasted less than 5 minutes, there was plenty of food, drink, and conversation, and I could wear a t-shirt.

June 5, 2010

2010-06-05T22:25:00.001-04:00

Life goes on..... My attorney dealing with my health insurance problem, is in the process of negotiating a settlement with Health Net. He sent them a demand for arbitration, and they expressed an interest in settling up. He sent them the same information that I had sent them, but he also discovered that they would have to pay for the arbitrator, ($400 per Hr.) and he appeared to be the expert that he is. I guess that they try to avoid payment, and try to settle if they get pushed..... Once again, not in good hands with the insurance co.

It has been busy here in lovely Frazier Park.... this weekend, we had a renaissance fair, and a custom car show. Since I am dry docked, and not traveling, I always forget to carry a camera. It was the best car show that I have ever attended. Apparently, car enthusiasts love to attend car shows, and it is sunny and cool up here on the mountain. There were over 100 entrants.... some of the best custom/hot rod cars in the country. There were also 10-15 movie cars. The bat mobile, ghost busters car, the Herbie Volkswagen's, the dukes of hazzard car, etc. If I was traveling, this would have been a highlight.

The renaissance fair was small but nice.... it is their first year, and they hope to make it an annual event.

Last weekend, there was a small town festival in a community about 12 miles further out into the mountains. It was all about lilacs, but had a parade, finger foods, craft booths, and lots of people that I don’t see often.

I read many blogs, (vicarious living at its best) and I have to credit Randy (Mobil Codger) for inspiration. He always seems to “get the story”. No matter where he is, he finds something or someone interesting. I guess that it didn’t occur to me that “here” would be interesting. I am going to agree that it is all about attitude.

May 23, 2010

2010-05-23T15:59:00.006-04:00

Owens River

Owens River

The base of Whitney

Japanese garden remnants at Manzanar internment camp

Mono lake

Happy days are here again..... for my creditors at least. The house sale is complete, and I can start paying my overdue bills on Monday. This past year has been an uphill run, and it is quite a relief to win one of the battles.

On the diabetes front, it looks like I have two choices..... a careful diet, and no medications, or a more relaxed diet, and moderate medication. So far, I am down to medication only once a day, and am trying to transition to no meds. It seems that my activity level makes a huge difference.

The “base of Whitney” expedition met with much early success, and was expanded to include the entire south eastern slope of the sierras. This grueling and dangerous undertaking included not just the natural terrain, (mountains, rivers, snow, hot springs, high winds, and lakes) but also man made obstacles such as restaurants, museums, and various retail outlets. It was exhausting, but well worth the effort.

May 2, 2010

2010-05-02T20:14:00.001-04:00

Hello all,

The good news is that there is not much news. My health continues to improve, and I have been able to work. There has only been a few times in my life that I have really enjoyed working, but now I feel blessed.

The 2 story house is sold.... well, in the process of being sold. I have sold it for less than replacement cost. I am a bit disappointed in the RE market right now, but am a bit happy that I have a buyer at all. Anyway, it should close in 2-3 weeks, and I will be able to pay some bills. I know that it doesn’t sound exciting, but really, it is.

Along with my health, my urge for adventure is returning as well..... Woo Hoo I am packing up the motor home and the kayaks, and heading for the Owens river for a week of camping (I know that it really isn’t camping) and paddling. The Owens river is, coincidentally, in the Owens valley, which is on the eastern side of the Sierra mountain range. The valley is at about 4000 ft. elevation, and is over seen by Mt. Whitney which is over 14,000 ft. elevation. This makes the Owens valley the deepest valley in the USA.

I remember the Win women, Claudia, Nancy, and friend (forgot the name) hiked to the top of Whitney, so I plan to maintain the honor of the Win men by exploring the bottom of Whitney. I mean...... the top is very small, and the bottom, well, it is so very large and deep, and much more difficult to explore...... I expect this feat to be accomplished in only one grueling day. Starting out in Santa Clarita, I expect to maintain a 60 MPH pace for the first 2 1/2 - 3 hours, (difficult, but doable) then a rest stop for lunch at a local restaurant, see the sights, and then another 2 hour sprint to the campground at Bishop.

I know that this is an ambitious schedule, and I have been sick and unable to train properly, but I really think that I can do this, and crave that wonderful sense of accomplishment that follows any difficult endeavor.

The Owens valley is just full of good things to do and see.... many old western movies were shot in the Alabama Hills, which is an area just outside of Lone Pine, that is dominated by huge piles of huge boulders.... picture the good guys being ambushed by the bad guys. There was also a Japanese internment camp, ironically near a town named Independence, that was used during WWII. If you like geography, natural science, and history, it is a good place to spend time. I am going to try to leave early enough to at least tour the museum dedicated to the internment camp.

The California Kayak Friends have organized the trip, and are always good company.

April 17, 2010

2010-04-17T13:50:00.003-04:00

Hello to all of my loyal friends who still check my blog...... I fear that this blog may have lost it’s reason for being..... My health is returning, and health updates are less and less necessary. I suppose that this could morph into a general info / travel blog. I guess that time will tell.

I am now the owner of two nearly new houses..... WOO Hoo..... The paperwork was finally done, (a little over a year from the original default) and the foreclosure sale was completed on Tues. Morning, April 13. I am now busily cleaning and fixing, and trying to get these houses ready for rent and/or sale. It is good work for me, as it is not too strenuous, and I can rest when I need to.

I have finally removed myself from my “sick spot” across the street from my good friends Carl and Kathy. They can now see the mountains without a motor home in the foreground, and I am once again parked on land that I own. I have moved into the driveway of my new two story house that is for sale. 40 foot driveway, and 36 foot motor home.... with trailer hitch and bumpers, not much room left over.

For those of you that don’t have an RV, have never lived in super small space, and have never used your super small living space as a law office...... you absolutely must be well organized, and keep your living/working space neat... a place for everything, and everything in its place. It is best to straighten up every few days, keep your paper work up to date, and throw away all unnecessary items weekly. (One good way to accomplish this is to move your house every few weeks. This may be the reason that the Win’s travel so much..... just a thought.)

Now for my world.....

At my best, I am not well organized, neat, or prone to keep my paper work up to date. Add in being sick, tired and depressed for most of the last year, and include staying parked in the same spot for 6 months. In spite of the best efforts of my friends, what I had was a small living space disaster, and a motor home in crisis. I was way behind in routine maintenance, and I am sure that the legal papers alone put me over the recommended GVWR.

I will spare you the details, but I will mention that it took 2 days to get this old motor home ready to travel a few miles. I have now resolved, every 2-3 months at the longest, change my scenery and put on some miles. Yes indeed folks, an excellent reason to get out on the road again.....

April 12, 2010

2010-04-12T22:28:00.000-04:00

Two weeks have passed, and I still feel pretty good.... My energy has returned, and good things are happening. The nightmare on Elm Street appears to be over. The opposing attorney has finally filed the order granting me relief from the automatic stay.... In english, the Elm property, that the debtor didn’t pay for, is now kicked out of the BK proceedings, and I can move forward with the foreclosure sale. I will now be able to sell, or rent the houses, and start to recover some of the money that was owed to me.

I have also found an attorney to handle the dispute with Health Net. He thinks that I have a good case, and is willing to take on this case on spec..... we don’t win, he doesn’t get paid. He gets one third of any settlement, which could have me winning, and still owing money to the hospital. I am hoping for the best.

I put in a septic tank on my vacant lot on Spruce Trail... this keeps my building permit alive for another year. I am also planning a short and easy kayak trip next month.

I feels so good to be looking forward with anticipation in stead of dread........

March 29, 2010

2010-03-30T00:13:00.000-04:00

Ok, more time has passed, and not much has changed..... Well, there is one thing...... I feel better than I have in months, maybe more than a year.

My blood sugar level is under control, and I am beginning to have some energy. What a relief, I was beginning to think that I would never feel good again. I still do not have any stamina, but I think that will return as I am able to be more active.

I spent the day preparing for a “creditors meeting” tomorrow..... If I can’t get the opposing attorney to take care of business, I am going to file a request that the court find him in contempt. I don’t think that the judge will actually do it, but it should let me tell my story, (and annoy the opposing counsel) and the judge will probably give me my houses..... Of course, I have thought that before........

I am hoping that the dreary whiney posts are over for a while, and I can get back to doing interesting and useful things.........

March 18, 2010

2010-03-18T19:45:00.001-04:00

Well, it has been a couple of weeks, and there is nothing much to report...... I have had some success getting my blood sugar level into the normal range. I am still surprised how debilitating a little chemical imbalance is. I have spent my time doing only the most necessary things, and sleeping. I am still trying to figure out how to survive on the recommended diet.... no sugar, no carbohydrates, no good.

I did manage to make the trip (planned and paid for long ago) to Pa. to see my folks, and go to the high school state wrestling tournament with my siblings. I managed to climb the stairs to and from our seats, but my brother had to wheel me into and out of the arena. Humbling, to say the least.

This was my first, and hopefully last, trip as handicapped..... The airline was most accommodating, but it sure felt strange.

My houses still aren’t mine yet..... the opposing counsel is dragging his feet, and causing unnecessary delays. I suppose that billing $500 per hour is reason enough for him.

My next goal is to try and get healthy....... it has been a while.

March 6, 2010

2010-03-06T11:24:00.001-05:00

Well, finally something to be happy about....... I won my court case, and will be getting my houses back with in 2 weeks. It is an interesting story, that I am too tired to relate now, but the short version in..... they settled on the court house stairs, with some prodding from the judge.

It is almost 1 year exactly since they stopped paying the mortgage. Anyway, it will take some time, but I will be able to get my finances back in order, at least for a while.

Next is my dispute with my health insurance co.

March 3, 2010

2010-03-03T22:00:00.001-05:00

Ok, I will make this short and sweet.... Seems that I wasn’t just miserable sick, it really was life and death. I have type 2 diabetes. I went to the Dr. and found that my blood sugar level was to high to measure (over 600).... 4 shots of insulin later..... still to high to measure..... one more shot, and blood sugar was 475. Normal is about 100-180. I guess that my next symptom would have been coma and death.

I have been to worn out to do any research regarding this condition, but will try to get some info next week.

I am sure to join a “Fear of February” support group soon.

February 18, 2010

2010-02-18T10:09:00.002-05:00

My how time flies..... it has been over 2 weeks. There is really nothing to report..... I have been sick for most of the last 2 weeks, not life and death sick, but miserable sick..... fever, flu, etc. I am on the mend, but still somewhat miserable.

I am busy preparing for my evidentiary hearing on March 5. I have made the 200 mile round trip through the center of LA twice in order to sit in on some similar hearings. It seems to me that it is the only way to get an idea of how a court room works, and it is fun watching the attorneys trying to figure out who I am and what I am doing there. At first, when asked, I would tell them the story, but now, I just say that I am there to observe, and then make a note as they turn away..... last time, someone thought I was a reporter. I know, it is a very small pleasure, but I have to take what I can get..... OK, I have been watching reruns of Perry Mason, and LA Law as well.

Anyway, in the last week, I have produced 4, 340 page books of exhibits.... ok, ok, 1 book and 3 copies. That might not sound too impressive, but remember, this is in my motor home office. It now looks like a scene cut out of the “odd couple” for being unbelievably cluttered.

Friday, the 19th, is the deadline to file declarations with the court, and exchange exhibits, and I think, witness lists, with the opposing counsel. The judge wants all direct testimony to be by declaration..... a lot of typing, but allows me to throw things in that I am sure would/will be objected to in open court. I mean, you can’t un-ring a bell..... and what do I know, I am not a lawyer.

It seems that this last month has been just like this past year...... unpleasant, but necessary. Grit your teeth, and keep on walking..... it will be over soon. I know that complaining doesn’t help, but sometimes I feel like Sisyphus, pushing the stone up the mountain every day..........

January 30, 2010

2010-01-30T11:19:00.002-05:00

Well, here it is the end of Jan, and I have nothing other that a snow storm to report. It was a very wet and heavy 18-24 inches..... lots of fun. Eventually I did get up on the roof and push the snow off.

I am in contact with another “insurance lawyer”, he thinks that I may not fall under the erisa laws, and appears to be an expert in this area..... I have sent him about 5 lbs. Of paper, and will see if he wants to help me with this battle. He did tell me that I might end up owing a bunch of money, even if we win. You see, he gets his cut out of any settlement, and we may not get attorneys fees. The good part is that if we lose, I don’t owe him anything.

Health wise, I am doing OK..... some days are better than others, but the trend is still in the right direction.

January 19, 2010

2010-01-19T19:42:00.001-05:00

Well, time is passing, and I have nothing of interest to report......

Medically, I suppose that it is a good thing having nothing noteworthy going on. While I am still not 100%, I am feeling better and stronger every week.

It looks like I will not be able to go to Quartzsite this year, although I may be able to visit with the Win’s before they leave the Southwest. I plan to spend most of the next few months battling the BK court and my health insurance co....... I am hoping to have these things wrapped up by this summer.

This last year, for the first time in my life, I have had no long term plan. Most of my life, I have had a pretty good idea of what I would be doing for the next year. Being of modest means, and being addicted to living indoors and eating food, my plans mostly have revolved around work or business.

The extraordinary events of this past year have upset the normally predictable cadence of my life, and have left me floundering about. I am hoping that my life will fall into some kind of order, and be manageable once again.

January 7, 2010

2010-01-07T15:19:00.000-05:00

I arrived back in Frazier Park on Sunday, and decided to stay in town across from Carls house instead of going to Lockwood Valley. Since I have been recovering, Carl and I have gotten into the habit of watching football together, and...... well, the playoffs start this weekend.........

I had my 3 month follow up doctors appointment yesterday, and was found to be cancer free!!! They took samples, did several scans, and found nothing out of the ordinary. I was surprised by the relief that I experienced when hearing the good news, I guess that I had underestimated the anxiety that goes along with check-ups.

My next appointment will be next Dec...... I am thrilled that I get a year off.

I started this year with 4 big issues to deal with: staying alive, of course being the most important, insurance issues next, collecting money or property out of my debtors BK, and getting my finances in order. I guess, for now, I can take cancer off of the list.

A year ago, my finances were in pretty good order, and none of the other problems existed. I guess that this is an example of how quickly things can change. The choice seems simple, live consumed with fear and anger, or be happy that I am alive, and try to get the most out of every day. Seems like a no-brainer.......

December 28,2009

2009-12-28T19:33:00.001-05:00

Here I am in Yuma..... I arrived Sat. the 19th, and found a few wandering individuals already here. The Christmas Win rally didn’t really begin until Monday, so I had a few peaceful days to recover from the long drive getting here, and to get all of my systems up and running. I am enjoying reconnecting with friends that I have not seen since Feb.

I am really happy to be out and doing something beside being sick. The Win’s are an energetic outfit, and they seem to infect everyone who wanders into their circle. Wise doctors would likely prescribe two weeks with the Win’s as part of any recovery program.

I find myself impatient, and catch myself whining about having minimal energy. I seem to forget that only a few weeks ago, I had no energy..... half empty, half full????? Anyway, at this point, I seem headed for normal, and can’t wait to get there.

This motor home society displays an interesting dynamic that is similar to the social interaction that I remember from the “cruising sailor” world. People make friends easily, and interact completely at will..... no one is compelled to spend time with anyone, or in any particular activity..... you are not trapped by co-workers, your job, or your neighbors. Everyone is free to engage or avoid anyone. You are free to come and go without recriminations, and are free to spend your time exactly as you wish. The other side of the coin also warrants mention here.... others are free to avoid you as well.

As an observer of human nature, I find it interesting to notice the different ways that people (veterans and beginners alike) adapt to this unregulated lifestyle. I am particularly fascinated by my own actions when immersed in this environment.... a step toward self awareness, or confirmation that simple minds are easily amused??? I guess that it really doesn’t matter.

I will return to Frazier Park, and spend Jan. and Feb. working on my financial health. I have my last BK hearing on March 5, and need to begin a lawsuit against my health insurance co. I was unable to find a law firm to take my case on contingency..... I think that it is because my case likely falls under the ERISA laws, and there is no possibility of a large “bad faith” settlement. At best, I will be able to make them pay my medical bills.

I have a doctors appointment on the 5th of Jan. Which I believe is the first in a yearly search for cancerous activity in my necessary organs. As it now stands, there is only a 5-10% chance that my cancer has spread beyond my bladder..... Those are pretty good odds, and seem to have dropped the medical news off of the front page.

December 22, 2009

2009-12-22T13:07:00.001-05:00

Hi all..... I am in Yuma, Az. and am having internet problems..... More when I get things sorted out.

December 15, 2009

2009-12-15T13:08:00.001-05:00

Well, it has been 9 weeks since my last invasive procedure, and the only thing scheduled is a cat scan on Jan. 5. I believe that this is a record. For the last year, every time that I started feeling better, it was another debilitating treatment of some kind. It feels odd, and probably wrong, to be so focused on my “operation”, but, after all, this is a medical information blog.

I have noticed some improvement in the energy and endurance areas, and am thinking of visiting the WIN’s in Yuma for a few days. I am not sure that I will actually do it, but I am encouraged to at least be thinking about doing something other than being sick. This last year illness has dominated my life, and I look forward to changing that this coming new year.

As I recover physically from my illness, I notice that I still need to recover from my legal and financial hangover. When feeling really sick, I am able to ignore all of the side issues, but when feeling better, they come creeping back into my mind, and keeping me awake at night. I suppose that all of this is normal.

Nothing was resolved at the BK hearing...... I think that the judge uses time to punish people that cannot come to some agreement on their own. This issue will be decided by the judge on March 5, 2010. Opposing counsel requested a full day for the hearing, and claims to need at least 3 months to prepare. The biggest issue is the value of the houses.... What makes it tough and expensive, is that paper work, (appraisals and BPO’s) cannot be used without having the people that prepared them, in court to cross examine.

I found out that the opposing counsel is being paid by the hour...... not a big deal, except that he is the one who is trying to broker a deal, and is the only one that will profit from an ongoing battle. I think that it may be useful that the process is bleeding the debtors, but I hate to see money that could be used to settle our differences, being used to promote the fight. Maybe I should contact the principals personally.

December 8, 2009

2009-12-08T10:17:00.001-05:00

8 weeks and counting..... I will be so glad when the passing of time will be marked by something other than a medical event.

Medically, I continue to make progress, slow, but progress just the same. My new bladder is becoming more predicable, and the holes in my belly are almost totally closed up. I am still tired and moderately depressed, but trending in the right direction. Energy, optimism, and humor are still missing in action.

Legally, I am still in the eye of the storm. BK law is complicated and convoluted, especially for beginners like me. I have 3 hearings scheduled for tomorrow, and am not sure if things will be finalized there, or just another continuance. There are 144 hearings scheduled between 1:30 and the end of the day.... doesn’t seem to leave much time for argument.

I want the judge to throw the houses in question out of the proceedings, let me foreclose, and start seeing some income. The debtor wants to keep the houses in the BK, and trickle out a bit of the money owed while waiting for the housing market to improve. The BK trustee, the guy that handles the estate money, and is supposed to broker a deal between the parties, stands to gain about $20,000 if the houses stay in the BK plan. (He gets about 10% of all money that passes through the plan.) Needless to say, he has sided with the debtor, and is opposing my motion for relief, and pushing for an unreasonable repayment plan to be confirmed. I feel a little out gunned, but who knows, David did beat Goliath after all.

I have put my insurance dispute on the back burner until I get the BK stuff sorted out, but am still trying to find an attorney to handle it on contingency.

I am making a conscious effort to direct my mind into a pleasant future...... reading/thinking about RV trips, BBQ’s, kayak adventures, and 4 wheel drive fun. I am hoping that my mind will drag me out of the doldrums.

November 30, 2009

2009-11-30T19:09:00.001-05:00

OK, today is 7 weeks since my surgery, and I am still doing about the same. My wounds are nearly healed, and I can walk with very little pain. My new bladder is working pretty well..... daytime is almost perfect, and nighttime is a bit iffy, but getting better. My sense of humor and cheerful demeanor are still missing in action.

I am still caught in the grasp of an anesthesia hangover. Basically healthy, but tired all of the time.... no energy or endurance. I understand that this is fairly normal, and the only answer is patience. I guess that the good news is that I am on schedule, and things should get better from here.

I attended the “meeting of creditors” last Monday, regarding the RE note that I hold. The debtors counsel made a settlement offer that was not quite good enough, so we are still negotiating. It involves a sale of one house to the debtors’ step son, and it is about 50/50 that the sale is a sham, so I am not getting my hopes up. My next court date is Dec 9..... confirmation hearing, relief from stay hearing, motion to sell RE hearing. Looks like it will be a busy day.

We had our first snow of the year...... Sat. Morning, about 4 inches.... lots of fun. This reminds me that it is time to head south and to a lower elevation, but I think that I will have to wait until I feel better, and I get a better handle on my finances.

I have read this post, and notice that it lacks humor and zip..... lifeless, just information. Sorry.....

November 19, 2009

2009-11-19T11:01:00.001-05:00

Well, Monday will be 6 weeks since my surgery. I am definitely doing better, physically and emotionally. I still have up days and down days, but it seems that there might be a light at the end of the tunnel. This fits into the pattern for this surgery...... 6 weeks to feel better, 6 weeks to one year to feel good.

My new bladder is beginning to work fairly well.... This means that I am starting to have some control over when I pee...... Woo Hoo..... I am recommending that all of you sell your "Depends" stock soon, it is almost certain to take a dive.

This whole situation reminds me that you don’t appreciate something until it is gone. Hopefully, I will emerge from this nightmare with a new appreciation for the simpler things in life..... a kinder, gentler, and more empathetic person. Of course, I might just turn into a mean, angry, bitter old man..... Right now I would put the odds at about 60-40..... LOL

Tuesday, I had to file opposition papers at the bankruptcy court in Santa Anna, a round trip of over 200 miles. It was my most ambitious outing to date, so my friend Carl went with me for company and as a relief driver. I held up remarkably well, so well in fact, that I thought that my endurance had returned. The next day, I spent about 40 minutes pumping out my black water tank, and felt like I had been hit by the swine flue, and run over by a truck. I ended up spending most of the day in bed.

I am anxious to get back to some kind of normal life, but think that it will still be a “good day, bad day” situation for a while. I am, however, very happy that things are heading in the right direction.

November 11, 2009

2009-11-09T11:44:00.000-05:00

I am now 4 weeks out from surgery..... Good news..... my legs are starting to work again. I can now walk short distances without the walker. It is slow and moderately painful, but still a welcome improvement.

I am still anxiously awaiting the return of my energy..... as of now, it is a struggle to do anything. I had this same energy problem after my second TURB back in April. I think that it is a part of the anesthesia hangover, and is related to the length of time you are under. For now, I think that the best thing is to just wait it out. I do, however, feel guilty regarding the important things that are awaiting my efforts.

It seems to be time for me to venture out into the world, and I find myself very reluctant. It may take several months to gain some control over my new bladder, and the thought of public embarrassment is overwhelming. The best advice that I have found regarding this messy little problem is to always carry a bottle of drinking water, and pour it over my lap if necessary. Who knew that I would be spending my time learning to walk, and potty training.

People that know, think that this may be the most challenging emotional time for someone in my situation. The drama and trauma are over, the decisions are made, the procedures complete, and I will soon be able to take care of all of my needs. I now begin the slow process of learning to live with my new body parts, and the related limitations. My plan is to be kind and patient with myself, but still do what I can everyday. Do my best to handle problems as they present themselves, and try to get back to normal activities as soon as possible.

There are not words strong enough to express my gratitude to my friends and family. Virtually everyone that I know has gone out of their way to help me during this last year. I still feel humbled and unworthy.....

November 3, 2009

2009-11-03T16:26:00.001-05:00

Hello to all,
It has been over 3 weeks since my surgery, and I expected to be posting a lighthearted account of my stay in the hospital.... but seem unable to find my sense of humor. In spite of this, I feel obligated to keep everyone up to date.

I am recovering from the surgery on schedule.... by this I mean, the holes in my body are healing up, my new plumbing is beginning to function as expected, and I am feeling a little better week by week. My friends have stepped up and are taking very good care of me, and I expect to get back to my old self in a couple of months.

The good part is that the cancer was confined to the bladder, my pathology report is clear, and it is 95% certain that the cancer is gone. My ongoing treatment will likely just be a cat scan every year. Although life will never be the same as it was, I should be able to live a fairly normal life.

The bad part is, that I am having trouble with my legs, and had to return to the hospital for a couple of days of tests. The doctors have determined that there is nothing life threatening..... blood clots, infections, abscesses, etc. I have very little feeling in the upper thigh area of both legs, and cannot lift either leg to take a step without supporting my weight with my arms..... am now using a walker to get around. The doctors think that this is the result of nerve damage/irritation, and will probably resolve itself with time. I am hoping that they are right, as there does not seem to be a plan B.

Recovery is slower than I expected..... walking 200 ft. is still exhausting, but suppose to get better with time.
I wish that I had a fast forward button.....

October 25, 2009

2009-10-25T10:02:00.002-04:00

OK, I am home from the hospital, and doing well. Thanks to Claudia, who stayed with me at the hospital, and did a good job as "information officer". Thanks also to all of my friends who visited.... and thanks to my friends that are currently caring for me.
They say that you will feel better every day, but I have not found that to be the case..... I think that it might be better to say that you feel better every week.... anyway, that seems to be my experience.
Although I am very happy to be cancer free, I am still hurting and angry......
I will try to write more soon.

2009-10-14T13:08:00.003-04:00

Hi there. I'm writing this blog for John. His surgery went well on Monday. The doctor was able to make the neo bladder so everything went as planned. John is out of ICU and in a private room and will be in the hospital for another week. The best news is that the pathology report came back and the lymph nodes are clear...no indication of cancer!! This was the most postive news because there won't be any chemo and John can move forward and get better.

With any luck John will be able to write the next post!

Claudia

October 9, 2009

2009-10-09T10:23:00.002-04:00

In nature, when a creature becomes old and weak, or otherwise sick or injured, the predators and scavengers gather, all looking for a piece of the action. Some species will turn and devour the hapless creature, and with other species, the herd will eventually, necessarily move on, and the defenseless will be picked clean. I am beginning to realize that this is not personal, or mean, just natures way. I am fortunate that my herd, still seeing me as a valuable member, have circled the wagons, and are prepared to defend me. I know.... mixed metaphor.... I am grateful, and wish them success.

It is nearly time to go..... I have spent the past few weeks tying up loose ends, and putting things on hold. My house is now safely installed across the street from Carl's house, I have arranged a face lift for my damaged car, and I am ready to get on with this. Claudia, playing the part of Florence Nightingale, will be arriving on Friday, having just spent 2 weeks seeing her mother through cataract surgery on both eyes.

We will leave my rig here, and, on Saturday, and take her motor home to the Elks Lodge in Burbank, which is only 11 miles from the hospital. They have elect. and water hook ups for $10 per night..... a real bargain in the greater LA area. I sure am glad to be an Elk. Anyway, she will be able to take care of me, and her dog Sophie, with minimal commuting time.

Claudia will be posting updates on my blog, calling my sister Peg, calling Terri Lynn, and e-mailing to anyone who makes a request. Claudia is quite organized.
Claudia's phone # 530-906-1234, and her e-mail is claudiaj824@gmail.com

My surgery is scheduled for 7:30 AM, on Monday, but the slicing really doesn't start until 8:30. The doc. says that he should be done by 4:00 PM. I really should add a bit of reality here..... most people do not die during this procedure, and I am relatively young and healthy compared to most bladder surgery patients, so...... not to worry. It is a big deal to me, but fairly routine for the Doctor and his staff.

I will probably have cell service in my room, if not, the room probably has a phone. I will likely be under the influence of dangerous drugs for Monday and Tuesday, but happy to have calls and visitors after that. I expect that Claudia will report any movement toward normal intellect.

I will be at: USC Kenneth Norris Cancer Hospital, 1441 Eastlake Avenue, LA, Ca, 90033. Terri Lynn will have copies of directions for those that want to visit.

On Tuesday, I realized that my life had truly changed..... At Walmart, real men buy guns and ammunition, mud tires for the truck, steak, camping supplies, beer, wide screen TV's and such.

With upcoming abdominal surgery, and new, unhealed, untrained and untested, plumbing...... I bought a robe (for tail coverage at the hospital), XL draw string jammies, XL underwear, and water proof sheets. (I couldn't bring myself to ask where the depends were, I plan to push that job off onto one of my friends who will innocently ask “is there anything that I can do?”) At the check out counter, I felt just the same as when I bought my first condom, I just knew that everyone was looking at me...... It is hell to get old and sick...... modesty, dignity and self image are the first casualties.

On the up side, my modesty, dignity, and self image have always been marginal anyway, and this procedure, though uncomfortable, will give me the best chance to be cancer free, and live a fairly normal life.

October, 5, 2009

2009-10-05T09:39:00.002-04:00

One week and counting.....Time is racing..... D day is next Monday...... I enter the hospital on Sunday morning for a day of testing and GI tract cleansing. It really doesn't get much better that that. LOL A very expensive place to stay, and only clear liquids on the menu.

I really don't know what to say.... my emotions are all over the map, and I expect that this is normal. My plan is to endure this week, get through next week, and do the best that I can after that. Not a great plan, or even a unique plan.... it is, I think, the only plan available. I think that I have done the best that I can considering the circumstances. My doctor is one of the best in the world, the hospital is very well regarded, and, apparently, my insurance co. is going to pay this time.

I am confident that I am doing the right thing, and hoping for a good outcome. I hope that I will end up with a “neo bladder”, although I know that it is an “operating room” decision for the surgeon. The doc. will try to preserve the nerves that allow men to preform like men. Needless to say, I am hoping for success.

The next big event, after the surgery, will be the pathology report. (48 hours after the surgery) They remove the bladder, prostate, and surrounding lymph nodes, and send them off to the lab. If it is “all clear”, then 95% chance that I won't ever have to deal with this again. If not “all clear”, then chemo, and a much reduced chance of survival.

In spite of my confidence in the decision, the doctor, the facility, and the procedure, I am still anxious, scared, angry, and horrified. Part of me thinks that even the best outcome is bad, and I find myself hoping for the “least worst” result. The other part of me recognizes that I may be avoiding a slow painful death, and be able to live a near normal life, The technology available is hard to believe, imagine, making new body parts. I guess that both of these are reasonable assessments.

The Ca. Dept. of Insurance has informed me that they are very happy that I contacted them, and they encourage me to stay in touch, but are unable to help with this particular problem. They say that my dispute with Health Net is a “he said, he said”...... Nothing that they can do, and that litigation is my next step. Disappointing, but I have to agree. I am still seeking a lawyer to take this on spec. If I am unsuccessful, I guess that I will do it myself...... a bit of David and Goliath drama.....

I am spending the day preparing for the hearing on my “relief from stay” motion. Imagine me in a suit and tie...... trying to make a reasoned argument with no emotion leaking out. I have the facts, and the law, on my side, but I realize that “facts and law” may not carry the day, and that they may be able to cause more delays. I will try to present myself as “poor but honest” seeking much needed justice.

Life has gotten very complicated, and much of the time I feel like giving up..... but today, I feel like a warrior..... OK, a backed into a corner, and greatly out numbered, warrior, but still willing to engage the battle.

September 29, 2009

2009-09-29T08:59:00.001-04:00

Two weeks and counting...... seems a little bit like a “Twilight Zone” episode.... I, apparently, signed up as “victim” in a knife fight, and, in the Zone, there is no backing out.

Really though, I am staying busy making preparations for being “out of commission” for a couple of months. My friends, Carl and Kathy, have invited me to park across the street from their house...... I will be in town, and near my friends that have kindly offered to look after me. They offered me their guest room, but you all know me, I would just be too uncomfortable in a house.

Carl and I spent yesterday putting in an electrical service. There are definite advantages to owning a backhoe, and living in a town with dirt streets. Carl and I tracked down most of the neighbors and advised them that this was only temporary..... Well, this is Frazier Park, and they could have easily thought this was permanent.... OK, it could be permanent, depending on how my finances go. LOL Anyway, we are hoping that “code enforcement” has better things to do.

I have 8-10 friends that have offered to check in and see if there is anything that I need.... I am thinking.... Wash and wax the motor home, change the oil in the car, shampoo the carpets, etc. guess that I will need to make a list.

The BK is going about as expected, the meeting of creditors has been pushed to Nov. 23, and the confirmation hearing has been pushed to Dec. 9. I am hopeful that the “relief of stay” hearing will stay on schedule for Oct. 6. If so, I may be able to complete the foreclosure, and put some money in the bank.... Well, just long enough to pay some bills. LOL I did, however, make a deal with UPMC, to make monthly payments for 6 months. This will keep my credit rating in tact while I try to force Health Net to honor their obligation.

I can't say enough about the people in my life...... I don't know what I would do without them.

September 19, 2009

2009-09-19T11:33:00.003-04:00

This is a rant, followed by a weak attempt at humor..... READERS BEWHERE

Well, “There is no joy in Mudville”. Health Net, my insurance Co, pounded some more nails into my coffin today. They have denied my appeal for payment of about $60,000 to UPMC. UPMC has started collection proceedings. Credit likely to be ruined......

I have not heard from the Insurance Commissioner yet, but I am sure that he will be by with some more coffin nails. I guess that the commissioner and Health Net belong to the same club. I was foolish to believe any different. The insurance co. is saying, “our phone reps. Are so well trained, that they must have given you the correct information, and it is right there in the notes”. I have been trying to get information on the existence of a recording of the pertinent conversation regarding this.... 5 weeks and counting.... They continue to give me conflicting directions, and excuses. If this recording exists, and it supports my argument, I am afraid that it will become lost. What they have done seems like such a blatant abuse of the rules, it is hard for me to believe that this is happening. The only avenue left is a lawsuit, but I don't know how I will find the energy to continue. I guess that they know that they are dealing with sick people, and have no problem using that to their advantage. I suppose that “waiting for the patient to die” is good business.

I still have high hopes regarding the property that is tied up in BK. It seems impossible that my “motion for relief” would be denied, but I have been wrong before. If I can get the property out of the BK, and proceed with the foreclosure, I may be able to avoid financial ruin.

I think that the only way out, is to write a hit country song...... Old, Broke, Sick, and Single..... Has a nice ring to it..... I guess that I can always downsize, and get by.

September 14, 2009

2009-09-14T15:43:00.001-04:00

Ok, Here is the schedule..... I enter the hospital on Sun. morning, Oct. 11, have my surgery Mon. morning at 7:30, and will be there 8 – 10 days. I can expect to resume activities in about 6 weeks and feel good, maybe sooner and maybe later.....

I will supply more details as they become available. I don't know if I will have internet access or energy in the hospital. If I am unable to post reports in my blog, I encourage my friends and family to post my condition in the comments section of my blog.

I will, of course, have my cell phone, and, depending on the level of drugs in my system, will welcome all calls.

September 12, 2009

2009-09-12T22:05:00.002-04:00

I guess that my plan to post blogs only when I feel good is now obsolete. I do, however, feel a bit less bad today, which I guess will be the new criteria.

The indecision is gone, and I am coming to terms with the inevitable sacrifice of some body parts. I am trying to accept the idea, that sometimes, bad things happen, and when they do, anger is useless. My plan is to do this as well as I can, and learn to live with the result. I didn't really choose this plan, it just seems to be the only one available.

I have spent the last 3 days playing lawyer, which actually took my mind off of health issues. I produced, and filed with the Bankruptcy Court, a motion for “relief of automatic stay”' and an “opposition to confirmation of the Chapter 13 Plan”. Each of these were about 75 pages, and were necessary to protect my interest in the property that I sold 3 years ago, which is currently in foreclosure. The opposition motion is asking the court to deny a reorganization plan that pays me far less that I should receive, and the relief motion is asking the court to kick the 2 houses out of the BK, and let me go forward with the foreclosure. I have high hopes for both of them.

I don't like being in this legal battle, but I do find it very interesting, and am getting a reasonably good education. I have discovered things that they probably don't teach in law school. Every thing that you need to defend your self is available on the internet!!!!! I just root through existing cases, (public documents all, at cabc.uscourts.gov) and find one that is similar to my case. All of the pleadings are there; motions, notices, caption pages, declarations, exhibits, and forms...... They are all there! The pleadings and forms contain the arguments used in similar cases, and all reference the proper sections of the code. The US Civil Code itself, is there as well.

This is stuff that other people paid high priced lawyers, tens of thousands of dollars to produce. They paid their lawyers to research the law, make the arguments, and produce the paperwork. All of that stuff is available for 8 cents a page in the comfort of your own home, or in my case motor home, or for free at the court house. You just substitute your name and the facts of your case. I mostly used paperwork from the legal department at “Country Wide Home Mortgage Co.” I figured that they must certainly know what they are doing. What a country.

The hard part, I find, is that you actually have to read the code sections, and really understand the arguments..... This becomes easier with time.

Oh yes, the “Rules of Procedure”, there are United States Rules, 9th District Rules, Central Division Rules, Santa Ana Rules, and ….... each Judge has their own special rules. They spend a lot of time in law school teaching these things, and I was a bit worried about the consequences of screwing up some procedural rule, and costing myself a bunch of money. Then I found this rule...... drum roll...... “these rules shall not be enforced in a way that would cause someone to lose their rights”. I think that these rules help cases travel through the system in a predictable way.

I know that my paperwork is not as polished as that of a top law firm, but am hoping that my Judge will see me as “poor but honest” and trying hard to do the appropriate things. The Judge in my last case took on this attitude, and I hope this Judge will do the same. I did, however, pay particular attention to the time allowed for various actions, and to the proper service of notice on the opposition.

I should pause at this point to thank my ex, Sherrie, who brought a frivolous lawsuit against me regarding a property that we jointly owned. That is when I discovered these little known techniques. I guess that there really was a silver lining to that drama.

Also a special thanks to my brother in law Tim Esq, who looks over my shoulder, and offers encouragement and advice as necessary.

While I am in the thanking business, I should thank Claudia as well. She visited for a couple of weeks of no fun, all work, tired, dirty, and crabby. I was gone for 7 months, and had a lot of catching up to do. The surprising part, is that she has offered to return for the upcoming medical festivities.

I should also thank all of my family and friends out there that following this blog, and offer your support. It really does matter to me.

Thanks also to all of my local friends that are offering to help me through the next few months.

Back to the medical future..... they are going to remove my bladder and prostate, harvest about 4 feet of intestine, and craft a new bladder for me. At least that is the plan, however, they could find problems that would prevent this procedure. It won't be the same, but may allow me to live a fairly normal life. I am very thankful that this technology exists.

My doctor, Dr. Boyd, is head of the department at USC Norris, and was one of the team that developed this procedure back in the middle 80's. Let's all wish him luck.

For those of you who are interested in the gory details, just google “neobladder”.

September 8, 2009

2009-09-08T23:38:00.003-04:00

I am not sure how to start..... I saw the Doc. today, and got bad news. Despite the recent treatments, I still have cancer, the bad kind that tries to burrow through the bladder muscle wall (now weakened by treatments) and set up colonies in my other organs. He couldn't see anything but inflammation, however, he took random samples, and the cancer was found by the pathologist.

The good news, the cat scan found nothing suspicious in my other organs.

The bad news, trying to save my bladder seems foolhardy at this point. For the best chance to stay alive, the bladder must go. This will likely be scheduled for the first part of October.

Needless to say, I am very disappointed.

August 28, 2009

2009-08-28T23:01:00.001-04:00

Quick update...... The poke and peek procedure went about as expected, however, my bladder has not healed from the BCG treatments, and the doc. was unable to offer anything concrete. He described it as looking like hamburger. Sorry for that image, but I am just reporting the facts. He is recommending a cat scan to check the rest of my organs.... my last one was back in Feb, with an ex, and he is probably a bit jealous.
Dr. Boyd wants to have a serious talk in about 2 weeks..... sounds like bad news, but maybe he just wants to take this relationship to the next level.
I will write more when I feel better, and am not under the influence of dangerous drugs.

August 20, 2009

2009-08-21T00:13:00.001-04:00

WARNING...... SERIOUS WHINING AHEAD!!!!!! Sorry, but it can't be helped.

First of all, sorry for not posting sooner. I generally wait until I feel inspired, and on top of things, but it just isn't happening. I have been feeling overwhelmed, and seem unable to turn things around. The wolves are still circling, and anxiety is high.

Anyway, I met with the Doc. at USC, and didn't really learn anything new, my chances are still poor...... funny, I keep changing doctors, and they keep saying the same thing. LOL I have an appointment for a “poke and peek” on Friday the 28th. I will be asleep, in the event that he needs to do some cutting, and will be happy to doze through the uncomfortable part, but not looking forward to the anesthesia hangover. I am hoping for some definite result this time.... I am worn out with the indecision.

I spent the day preparing one of my big guns in the insurance war. I am ready to send my complaint in to the Insurance Commissioner. Health Net led me and UPMC to believe that my surgeries would be covered, and now are trying to strand me with a $60,000 bill..... regardless of what they said, there is the fine print on page 42....... I have high hopes, after all, I am sure that the government will protect me from the giant corporation. LOL

Speaking of money, the guy that owes me $185,000 has filed bankruptcy. I think that it is just a delaying tactic, and expect a series of “requests for extensions”. In the end, I should get my money, or the houses. The trouble is, that I don't know if it will be a couple of months, or a couple of years.... a little something to work on in my spare time.

The good news is, I have found renters for my 2 vacant apartments. I still have some work to do getting them ready for move in, but it will be good to have them producing income again.

I must say that here, I am surrounded by long term friends. They are helpful and supportive in every way. Unfortunately, there is not much that they can do while I am embroiled in these battles. I am trying, but find it hard to be cheerful. I truly am grateful, but am not sure that it shows.

It seems that the reality here is...... life is not fair.... not news really, but I really hoped that it might be. Most of the trouble in my life has come from my own poor decisions, no fun, but well deserved. This time, I had done everything right, I had tons of insurance, money in the bank, and more on its way...... I even got solar for the MH...... what could go wrong?

August 10, 2009

2009-08-10T23:39:00.002-04:00

So, tomorrow is a big day..... foreclosure sale and Dr. appointment. My mortgagee has not yet filed BK, she still might, but if not, then I get the property or my money. Woo Hoo. I could sure use the money, and am hopeful that this drama will end quietly. I am not expecting much from my first meeting with the new doctor, but am still excited about it.... you know, first date jitters.

I woke up with adrenalin seeping into system, and appeared poised to worry away the day, after all, it is what I do. But wait, not this time...... I made a conscious effort to relax, and have a serious talk with myself. “These events were not a surprise, I knew what to expect, and had a plan for most of the likely outcomes. Try to spend the day doing something useful.” Now I know that this doesn't seem like much to some of you, but for me, that was an excellent bit of therapy. Some good advice from a trusted friend.

Ok, so far, so good. I went into town, called to confirm my Dr. appointment, and got involved in an earthmoving project with some friends. Well ok, it was really rock moving..... very manly stuff. A huge pile of rocks, trucks, dump trailer, back hoe, a bobcat, and diesel fumes in the air. You could have cut the testosterone with a knife!!

The day was going very well, then crisis..... USC called and said that they had not received any of my records or the pathology slides. Yikes, no need to see a doctor that knows nothing of my condition. Instant adrenalin rush, another stern talk with myself, a flurry of faxes, and all ok. Beat the Pittsburgh UPS man with minuets to spare. I would like to think that it was just a mistake, but, I had broken it off rather suddenly.

The day ended by unsticking a truck and loaded trailer that was buried about a ¼ mile down a dirt bike trail. Well, I wont name names, wouldn't want to embarrass anyone, but more trucks, even larger machines, and more testosterone. Altogether a fine day.

August 3, 2009

2009-08-03T21:56:00.003-04:00

Ok, another quick update. I have decided to end my relationship with UPMC, and have made a date with the seductive and available Dr. Boyd at USC Norris. I do not have hard feelings, in fact, I have many fond memories and still think that UPMC is a wonderful hospital, with lots to offer. I am sure that, given time to heal, they will find another bladder cancer patient.

My appointment will be in the afternoon of August 11, oddly enough, the same day that the foreclosure sale is supposed to take place in the morning. A double header, so to speak. It is likely that neither of these events will yield definitive results. Dr. Boyd may want to get to know me better, and not want to “do it” on the first date, and my mortgagee has threatened bankruptcy, which would delay the sale. Still, I am pleased to have things moving forward.

On another front, I just got a look at my file from the local clinic.... I guess that I should bring everyone up to date. I probably had the first symptoms of my cancer back in the fall of 2007, and went to the local clinic. They found microscopic blood in my urine, and prescribed antibiotics. The problem persisted, and different drugs were prescribed...... Symptoms disappeared. Several doctors have said, very definitively, that “any blood in urine, straight to the urologist”, anything else is severe malpractice. Now, I am not generally the type to engage the lawyers, but I thought I might have no choice...... Back to the clinic file. On the notes from my 3^rd and last visit, at the bottom of the page, away from everything else on the bottom of the page, were the following words..... “urologist consult advised”.

This advice never happened, I know me, and I would have been all over that recommendation. Why, what might be wrong, is this important, is this just defensive medicine? It is well known, legendary in fact, that I always question authority. It has been a habit/hobby of mine since I was.... well, about 4 years old. My family, friends, and I have suffered greatly as a result. I remember annoying the appointment person and the physicians assistant I was scheduled to see, questioning why I was seeing him a instead of a “real doctor”. I know that I would have demanded a discussion about that recommendation, and would In fact, not have taken it lightly.

Over the last 7 months I have noticed many warnings and disclaimers, in reports and notes, that never actually took place. At first I was amused, but now I see why, CYA Note to self, and everyone else..... Always get the reports and notes, and read them carefully. I guess that I will be fully prepared if I survive this illness, and am stricken with something else..... Maybe a career as a consultant, give seminars, go on Oprah.... Anyway, lesson learned, and one less thing to worry about.

After a moment of introspection, I realize that, during my years as a home inspector, I have likely been guilty of the same thing.

One last thing, everyone here keeps saying how good I look. Seems that everyone expected me to look like someone that had been through hell. My treatments were mostly contained in the bladder, and not the kind that made me nauseous and unable to eat. I can, however, assure you that if you could see the inside of my bladder, you would be horrified, get that look on your face, and start to ooze sympathy.

I have noticed, if I don't act sick, people don't treat me like I am sick, and that, is a very good thing.

July 27, 2009

2009-07-28T00:24:00.002-04:00

I made it back to Frazier Park, and it is good to be back in familiar territory..... I expected to be happily writing humorous stories about the trip west, but I can't seem to do it. All is not lost however, Claudia has documented the trip very well. Check out her blog..... “Black dogs house on wheels”.

I have spent a couple of days doing chores and taking stock of my business interests. There is so much to do, and so many decisions to make. Yup, stress is attacking me from all angles, and the wolves are still circling.

My next appointment is about 4 weeks away, and anticipatory anxiety seems to have found a spot in the back of my brain. Knowing that stress is bad for me seems to cause more stress..... Anyway,I am trying to put off as many decisions as possible until after I find out if the BCG treatments were successful. I have never been comfortable making decisions with incomplete information, and now there are so many “unknowns” in the equations that there are no reasonable solutions. As of now, I am unable to form a plan that makes sense..... very disturbing.

The question of the day....... Should I be faithful, and go back to UPMC for the scheduled “poke and peek”, or start a new relationship with the pros at USC Norris?.... (One of the top bladder cancer centers in the country.) There is a lot to be said for each of these choices. I already have an intimate relationship with the folks at UPMC.... no “first time” jitters there, and they already know what to expect in my bladder. I would kind of hate to break up with them. USC Norris however, is very attractive, and available. A classic dilemma. There is also the insurance issue, Health Net would like to hook me up with USC Norris (in my network), and is still unhappy with my affair with UPMC, and is still refusing to pay...... about $64,000 at this point.

My advice, read the fine print, all of it.... and maybe record all conversations with the insurance people...... they seem to have a very short memory. You are really not in the “good hands”.

Sorry about the complaining nature of this post, but after several attempts, this is what happens when I start typing.

July 22, 2009

2009-07-22T21:05:00.001-04:00

Just another update..... I am in Logsten, Or. and will be leaving here tomorrow for points south. I spent a couple of days in Elkton, Or, visiting Sandy and Bob, and have been visiting the Win's here in Logsten, Oregon since Monday. I have been getting my last taste of vacation before getting home and engaging the many issues that await me there. As always, near the end of an adventure, my mind has been shifting from the enjoyable events here, to the necessities of life that will be my focus for the next 4 weeks. I have much to do, but will have to hold off any major decisions until after my Dr. appointment on the 19th of August.

I am now 2 weeks beyond my last intimate encounter with my BCG nurse, (I haven't heard from her, not even a phone call...) and am beginning to feel much better. My bladder is still somewhat annoyed with me, but seems willing to forgive and forget, and appears to be rebuilding it's lining in an effort to return to normal.

I will try to post some trip pictures after I get settled in Frazier Park.

July 15, 2009

2009-07-15T22:25:00.001-04:00

Hi all, Just a quick update...... For the first Wed. in a long time, NO BGC TREATMENT. Woo Hooo. I could almost feel my bladder cringe when I started the motor home this afternoon. Now I will get to see how it feels to be 8 days since my last treatment.... much anticipation.

Claudia and I have made it to Bozeman Montana, and expect to reach Oregon in a couple of days. I will try to post some pics soon.

July 12, 2009

2009-07-12T21:33:00.000-04:00

Hi all, As you all know, I finished my BCG treatments on Wednesday, and am not due back to the doctor until Aug. 19, so there really won't be much medical news until then. I am feeling OK, but still have no stamina. I expect to feel better soon.

I picked up Claudia in Pittsburgh and headed west. We spent the first night in Cambridge, Ohio. and are now in Iowa City, Iowa, parked behind a strip mall for the night. We plan to stop at Mt. Rushmore for a couple of days of sightseeing, and then on to Oregan see friends and to meet up with the Wins.

I have said good by to my parents and siblings for a while, and look forward to seeing all of my friends soon. I will try to post a trip report and pics. as soon as I get back to Ca.

July 7, 2009

2009-07-07T18:59:00.002-04:00

I will be leaving Pa. for points west on Sat. Claudia, assuming that she survives the Mt. Whitney expedition, will meet me in Pittsburgh, and shepard me back to Ca.. We are planning to go across the top of the country, spend a few days in Oregon, and then south to Ca.

I have very mixed emotions about this. I have found that I really enjoy being around my family, yet going back to Ca. seems like going home to the family that I have adopted. My underlying thought seems to be that things will get back to normal when I get back to Ca, but I realize that things will never be back to the normal that I remember..... For me, normal has always included an optimistic view of the future. Right now part of me is pessimistic, and only sees the doom and gloom, and part of me is optimistic, aware of all of the good things, and expecting life to get better.

The standard answer is to feed the good thoughts, and starve the bad ones. I am having a hard time doing that, as the doom and gloom stuff refuses to be ignored. Treatment decisions, medical bills, reluctant insurance co, RE melt down, expiring building permit, eviction, and foreclosure (the foreclosure is regarding money owed to me)...... all circling me like a pack of wolves. The good things are there, family, friends, possible retirement, travel, adventure, etc..... but the wolves are always there, just outside the fire light.

I am receiving my last BCG treatment Wed, and will be done for 6 weeks. I am tolerating these treatments reasonably well, my bladder has gone from irritated to angry, and the rest of my body is annoyed with the entire process. Altogether not too bad. Best case scenario, I am cancer free at my next checkup, (6 weeks) and then cancer free at all of the following checkups ( every 3 months for 2 years, then every 6 months for 2 years, then every 1 year forever). Most likely scenario, cancer returns, followed by life without a bladder. Worse case scenario, cancer travels to other organs, and an early demise.

People with experience in this area say that anxiety will build as checkups approach. It will ease up as checkups pass, but will always be there. Now add in the items from the previous paragraph, and it feels like bears and buzzards have joined the wolves. Now I have always known that anxiety/stress is not good, and have always tried to avoid it, or fix the source. Unfortunately, I have never been able to deal with these kind of issues without a fair amount of stress, which likely is why I have cancer in the first place. (can you appreciate the irony?)

I guess that life has always been perilous, but now it seems that I must learn to live life with a new set of dangers.

In order to end this dreary post on a high note.... I attended a Sunday evening, drive in church service, with the rest of the family, in 3 different cars. The Baptist church owns some vacant land just outside of town, and have set up a stage there. They offered an hour of gospel music by a group from the next town over. There were about 30 cars there, with some of the people in folding chairs and the rest in their cars. The fun part came when people blew their horns in place of applause. The singers were a bit shocked at first, but seemed to enjoy it as well. Apparently this has been a tradition for the last 20 years, but a new experience for me.

In the interest of fairness, this weeks pictures are of my sisters bed and breakfast.... The Victorian Loft. Guests are pampered, and family and friends are always welcome. I enjoyed many fine meals here.

June 30, 2009

2009-06-30T13:55:00.005-04:00

A quiet week from any perspective..... Treatments moving along as expected, next to the last tomorrow. I hope that they are working well, but won't know until about 6 weeks later. (I plan to fly to Pittsburgh for this checkup.) The original 3 month checkup, has morphed into a 6 week checkup, with no explanation. My Doctors head nurse is off for a month, and I am working through surrogates. I guess that it will be better to know some results sooner rather than later, but I really was looking forward to 3 months away from doctors and hospitals...... A chance to get some of the necessary things done in Ca. I guess that I will have to work twice as fast..... or do half as much. LOL

For the last 10 days I have been the guest of my brother Bill, and his wife Bet, both very good hosts. They live in a home fit for an architectural magazine, on 5 manicured acres, in the middle of 160 acres of forest. Well ok, all of my siblings are successful, and live in fine houses, makes me wonder what happened to me. LOL

My brother has been helping me with a couple of long overdue jobs on the motor home.... Installing the catalytic heater, and putting a new rotor in the generator. I can't thank him enough.

Bill, Bet, Baxter, and Potter

A very nice RV site

Big front yard

New heater replaces the small cabinet door under the sink

Brother Bill, master craftsman

Finished product

Heater aimed at my favorite chair

Generator and old rotor

Give me a lever and a place to stand..... Archimedes, 340 AD.... Still works

June 24, 2009

2009-06-24T17:54:00.002-04:00

Today I had my 4th BCG treatment..... urethra and bladder are unhappy with the program, and still using all available resources to make me stop. It seems that you just can't reason with some body parts, it was, after all, my bladder that had the weak immigration policy that started this whole thing. The procedure and the days following are certainly uncomfortable, but the whole thing is tolerable, and I am still able to function.

Lately, I have been considering my mortality, (no big surprise there) and pondering the events and choices that brought me here. Several events have lined up to help focus my thoughts, and have given me a case of the “what ifs”.

I am immersed in family for the first time since my teens, parents, brothers and sisters, and nieces and nephews. Lunches, dinners, BBQ's, and other activities...... I have enjoyed the interaction, but I find myself most interested in the relationships between parents, children, and grandchildren..... did I mention that I have no kids, having passed up the joy and/or the heartbreak. The youth in the family are a pretty good bunch apparently, no mass murderers or meth addicts, no doubt a result of good parenting. Well ok, there are a few vegetarians, and several liberals. They are still young and may improve with age, but still very very disturbing. I am not confident that my parenting would have yielded the same result.

I recently had a long conversation with an old sweetheart. Still feel warm and fuzzy when I talk to her, a trip back into time. I realized that this is my longest romantic relationship, long term affection, nothing else feels quite the same.... 40 years. (Not to worry folks, she is safely married, and I realize that things would likely be different if this romance had followed a more traditional path.)

These events have literally given me a peek through the window of “the path not taken”.

For reasons that are explainable, I have lived an exciting and interesting life, at the expense of long term stability. I gave up the dream of family reunions and twin rocking chairs on the porch, for a memory rich in adventure, full of exciting events and encounters with remarkable people. Some were fleeting, with incredibly intense emotions, and some more enduring. Maybe like the difference between a series of short intense mystery stories, and a long involved novel. Most of these ended well, and still leave a warm spot in my heart, and a few exploded into chaos and left some scars. In the end, I guess that it made for an interesting life. I suppose that every one suffers a bit of the “path not taken” regrets, and I am sure that some think that the grass is greener on my side of the fence. I, however, am still wondering.

I think that in the end, lives are a reflection of the choices made. My life choices..... the result of some deep seated fear of commitment and responsibility, or cavalier responses to random circumstances. At this point, does it really matter, or can a look back at history improve the future?

June 15, 2009

2009-06-16T19:11:00.005-04:00

Not much new on the medical front..... Tomorrow is my 3rd BCG treatment, I felt a bit off for a day or so after my last treatment, and expect this to continue after future treatments. I feel lucky, I understand that radiation and chemo therapy are so much worse. I suppose that one with a broken leg should feel lucky to have not broken the other leg as well...... Enough said, I am sure that you get the picture.

On a more pleasant note, I had a nice adventure over the weekend. Claudia and I joined two local paddlers on a three day kayak/canoe/camping trip down the Susquehanna River Trail. We paddled to the campsite on Fri. afternoon, camped Fri. and Sat. night, and paddled to the take out Sun. morning. I have now done about 30 miles of the 80 miles that are available.

The river was beautiful, although a bit thin in places, with many riffles, huge boulders, tall tree lined banks, and a little honest to goodness white water. We had the chance to salolm through the barely submerged boulders, and to enjoy some refreshing spray. I was amazed at how much gear could be packed into an 11 ft. kayak, and with me included, I am sure that we exceeded the maximum GVW. Through the most exciting section, Moshannon Falls, (no real falls at the low water level) Claudia stayed dry, and I bounced off of a rock, buried the bow, and got a 5 gal. cold water lap dance.... It had to be the smaller boat and extra weight, certainly not operator error..... LOL Anyway, that is my story.

Locals, Matt and Paul, were about the best camping companions possible. First of all, they had canoes, with weight limits of over 1000 lbs, and brought lots of food and firewood..... or as Matt said “beer and gear”. Second, they were pleasant and easy going, generous with their supplies, excellent cooks and campers, and good conversationalists. Definitely the kind of guys that you want in your foxhole.

The river was mostly in the wilderness, with many great campsites available. The campsites are back in the trees, just off of the river, and are undeveloped except for user built fire rings and benches. We saw about 20 – 30 other boats (mostly canoes) on the river. About half of the people were camping over night, and the rest appeared to be on day trips. Here, like everywhere else I have been, the people on the river were friendly and polite. One group of 6 canoes, filled with thirsty young men, were amusing themselves by tipping each other over. It reminded me of what it was like to be young and invincible.

It is probably noticeable that I have been living a double life, sometimes a cheerful adventurer, sometimes an anxious victim. So far, I have only been able to distract myself and ignore the big issues. I want to learn to generate a fearless attitude.... defiantly engage the enemy and beat it into submission, instead of falling into despair when forced to deal with it. I can't think that this is the best way to approach the problem, I am convinced that it would be healthier to be on offense instead of defense. Guess that it is something to work on.

Just click on the pictures to enlarge them

The put in at Deer Creek

The white water doesn't look very impressive from this angle, but it was fun

Canoes coming down the river

Camp

In case of rain

Best sleeping accommodations

Claudia

West Branch of the Susquehanna River

The take out at Karthaus

June 10, 2009

2009-06-10T09:05:00.002-04:00

Not much to report..... Claudia has arrived for for a visit..... We have been exploring the area, and are planning a 3 day kayak trip down the river with the local paddling club. Claudia has a background in the insurance business, and has been kind enough to help me start to sort out the mountain of paper generated by the health care providers and the insurance co. Without her help I might survive the cancer, but succumb to the paperwork.

BCG (a weakened form of the tuberculosis bacteria) treatments are underway, (every Wed. at 2:00 PM) irritated urethra.... irritated bladder.... but no major negative side effects yet. This type of treatment seems relatively easy on the body compared to chemo and radiation. (See description below.) I am trying to remember that things could be much worse...... some days, it doesn't seem to help.

What is TICE® BCG and how does it work?

TICE® BCG is a bacterial preparation of a strain called Bacillus Calmette-Guerin (BCG). It contains live, attenuated bacteria. The medication was developed as a vaccine against tuberculosis but has been found to be useful in treating certain bladder cancers. Doctors have been using TICE® BCG for many years to treat and help prevent recurrence of tumors in patients with bladder CIS. It is also used following TUR to help prevent recurrence of Ta and T1 papillary tumors.

How BCG works to treat bladder cancer is not completely understood. A partial explanation may be that it appears to produce an inflammation in the lining of the bladder but the precise mechanism is not known.

In order to work, BCG must be in direct contact with the tumor cells. That’s why it is instilled -- administered directly into the bladder -- instead of being given by injection. BCG can be effective in treating and helping to prevent the return of bladder CIS. It also can be considered to be effective in helping prevent papillary tumors from coming back following TUR.

What occurs during TICE® BCG treatment?

The instillation -- pouring the medicine into your bladder -- takes only a few minutes. However, the medicine must stay in your bladder for 2 hours. The process itself is simple.

A tube (a catheter) is passed through your urethra and into your bladder. Any urine that remains in your bladder can then be removed so that the BCG can easily touch all of the bladder lining.

The TICE® BCG mixture is administered into your bladder through the catheter.

The medication stays in your bladder for 2 hours. During that time, you will be lying down. Your position will be changed from time to time to make sure that the BCG is in contact with all parts of the lining of the bladder long enough to be effective. Lying down and changing position may also help to reduce the urge to urinate during the treatment period.

What are the common side effects of treatment with TICE® BCG?

You should talk to your doctor about possible side effects associated with TICE® BCG treatment. Some reactions such as painful or frequent urination can be related to irritation of the bladder. These symptoms typically begin 4 to 6 hours after instillation and last 24-72 hours. They are usually seen after the third treatment and tend to increase in severity after each administration. Other symptoms, such as flu-like symptoms, fever, fatigue, and chills may affect your whole body. These symptoms also may get more frequent or worse with subsequent treatments.

Notify your doctor at once if you experience any problems, particularly severe urinary symptoms such as burning or painful urination, an urgent or frequent need to urinate, or blood in the urine. Also report joint pain, coughing, or rash. It is especially important to report these symptoms to your doctor before you receive the next treatment of BCG. They may be a sign that you have an infection requiring immediate attention. You should be aware that infections associated with TICE® BCG treatment have led to death on rare occasions. Symptoms lasting longer than 48 hours or a fever of 101.3°F (or higher) should be reported to your physician immediately.

June 2, 2009

2009-06-02T18:19:00.003-04:00

OK, it is D day...... I am going to go for the BCG treatment, and try to be one of the successful bladder savers. I am also planning a change in my diet and a change in some parts of my life style. It is a tall order, but probably my best chance.

I start tomorrow afternoon......

June 1, 2009

2009-06-01T08:57:00.006-04:00

Since starting this blog, I have been encouraged by many to “become a writer”. I don't want to take these compliments to literally, but my mind plays with the idea, and it has been a definite trend. My theory that prolific writers often suffer from chronic social deficiencies, and alcoholism is contradicted by my most recent experience. I have had a few days filled with bad news, interesting activities, pleasant social interaction, and sobriety, and still have an irresistible urge to write a blog piece. Mysteries abound.

I got a call from Dr. Campbell at the Cleveland Clinic last Fri, and found that my chance of a cure has been reduced yet again. My urinalysis showed signs of active cancer..... another nail in my bladders coffin. From my original diagnosis in Feb, my odds of being a long term bladder owner have gone from 0% to 50% to 35% to 20% to “less than 20%”. Horrified at the prospects, and paralyzed by fear once again.

Fast forward to Saturday, my BIL Tim found himself up against a deadline in a renovation project..... tenants needing to move in, and the house not ready. He has done huge favors for me, so it would make sense to ask me for help, after all, I am a professional. OK, that didn't happen. In an apparent break from his professions ethics, he displays remarkable compassion and selflessness. Some things are incomprehensible. I became aware of the situation and was able to help a bit. I am finding that my self centered approach may be counter productive, and that I felt better while painting the inside of closets..... maybe Tim has already discovered this phenomenon. BTW The tenants will be spending a free week in the normally expensive rental cabin.

With the tenant problem solved, my nephew Luke and I seized the day, well ok, we seized Sun. afternoon, and kayaked down the Susquehanna River. I feel a little guilty introducing him to a possible addiction, but better that family does it instead of a stranger. (Long boring trip description omitted) Beautiful day, beautiful river, blue heron, buzzards, Pa. wild mountain ferret, bald eagle being attacked by a smaller bird, thin water, encounters with predatory rocks, and a fine meal at the world famous 100 lb. Burger joint.

The river trip would have been great by itself, but what made it exceptional was a conversation of the most elusive type. Diverging beliefs, theories and opinions, regarding religion, social order, nature, joy, fear, anxiety, contentment, and morals, exchanged at a low decibel level, with no need for a winner or a loser. 24 year old Luke offered a defined, educated and well crafted view of the world, and I contributed an experienced and thoughtful but far less organized picture. No conclusions emerged, but Luke, wise beyond his years, offered me this, “if you don't fear death, close decisions don't much matter”..... I find some comfort in that, and noticed that I may fear “making a mistake” more than I fear death. Now that is disturbing.

Just an aside..... lately I have been meeting cancer survivors everywhere I go, I don't run around seeking this, but when people tell me their story, I tell them mine. At the kayak rental place, I met man who survived cancer, and a dog with bladder cancer who wagged his tail and gave me a friendly greeting. Knowing what I know about how he must feel, I was inspired by his attitude.

The day was capped off with a what I would call serendipitous, and Luke might call divine, gift. We launched the kayaks from Elliott's Park, (BTW Elliott is a dog, see photo of park sign) a privately owned and maintained, public welcome, park in Clearfield.

While retrieving my car at the park, I noticed a proprietary looking couple removing a barrier from a new patch of grass. Taking a page from Randy, (Mobile Kodgers author) who declares that we are surrounded by interesting stories if we just choose to look. I decided to get the story.... John and Carol own the park, and had just returned from canoe trip down the river. John has recovered from throat cancer and just celebrated his 5 year survivor anniversary. He is hosting a Livestrong (a Lance Armstrong organization) event here later this year, and gave me a yellow Livestrong bracelet to wear. He started to work on the park as a recovery activity, only able to work on it one hour at a time at first, and now seems vibrant and full of life. Quite an example for guys like me!

May 28, 2009

2009-05-28T13:46:00.002-04:00

I have been experiencing some highs and lows recently, full of energy and ready to take on any problem, or depressed and paralyzed with indecision.... Normal for my situation, or some previously dormant neurosis trying to get a foothold? Hard to say, but the future will likely answer that question.

I guess that colonoscopy gods took pity and smiled on me. I shared a room with another guy in for the same procedure, and felt like I had inadvertently wandered into a Seinfield episode. I got a visit from a competent anesthesiologist, and had an informative conversation about the difference between anesthesia and sedation. He got a visit from a nurse who gave him a short course in the lamaze method, describing sever cramp like pain, and deep breathing solutions. During recovery, he was in pain, and I was feeling fine. My nurse scurried in and out bringing coffee and juice, and making sure that I was warm enough, his nurse never showed up. He finally staggered out into the hall in search of help, was helped back into bed and abandoned by unidentified hospital personal, and his nurse still didn't show. He did ask for my doctors name, and was still there when I left. I hope that he survived.

I breezed through the colonoscopy with ease, and am now very proud of my healthy colon that will not have to be invaded again soon. Can ones body and mind get used to a “no holes barred” regimen of violent intrusion,.... if so, it is either a tribute to human adaptability, or blind obedience to a white smock..... Either way, it is path I have taken..... OK, well I do ask many questions.

Last week it hit me, I am, after all, an adventurer and a WIN, and decided to start acting the part. I pretended that I had just arrived in town, and went looking for fun things to do. WOW, it appears that I am near the epicenter of Pa. recreation. 100+ miles of navigable wilderness rivers complete with local paddling club, 100's of miles of hiking and bike trails, huge bolder fields, caverns, museums, etc.... Made me want to vacation here. LOL Anyway, I was overwhelmed with the possibilities, and at one point, felt that it would be hard to make the time to be sick. Realistic? Manic? Making lemonade? Avoiding the larger issues? A key to good health? Mid life crisis? Reasonable explanations all.

Of course the spell was broken by a conversation with a bladder cancer specialists at the Cleveland Clinic. (One of the best doctors and cancer treatment centers in the country.) He was brutally straight forward and honest, not ducking any questions, and was easily understandable. He mostly helped confirm and clarify things that I already knew, and helped narrow the big question. Do I give up more than 10, ten year survival percentage points, (80% Vs <70%, in an effort to join the 20% who successfully save their bladder. His opinion..... If I was a tiny bit worse, no question, out with the bladder and prostrate. If I was a lot better, no question, make a salvage effort. From a cancer perspective, no question,out with my organs, however, quality of life issues muddy the water. Success would be easy to take, early death would be painful and complicated, and life without a bladder could be fairly normal, or very complicated.

I need to decide this by next Tuesday. I appear adept at posing the questions, but clear answers seem above my intellect, and just out of reach. Maybe you have the answer..... feel free to comment.

May 22, 2009

2009-05-22T15:08:00.003-04:00

So, I am engaged in several disputes with my health insurance company, and naively entered this arena as an insurance virgin..... I fear that this will soon change. (More on this in future posts.)

Anyway, I am trying to be more organized, and rather than tackle the mountain of insurance paper, I decided to sort my picture folder instead. Guess that I need to do something about this procrastination tendency. In any event, I ran across these pictures that I like, and think add a bit of texture to my southern adventure. Hope that you like them too.

Many sheep pastures included guard dogs, these sheep seem to be very safe

You have to love a diner that has a resident dog on the porch

May 20, 2009

2009-05-20T20:22:00.007-04:00

Ok, preparations for tomorrows colonoscopy are underway. I just took 4 tiny pills, and am now confined to my MH, awaiting the designated time to begin drinking the dreaded liquid..... I have emptied the holding tanks, and cleared a path to the bathroom. What to do with the time, Hmmm, why not write the last travelogue piece for my blog.

The blog now returns to Tyler Bend Arkansas, home of high water, poisonous snakes, vicious insects, handicapped raccoons, suicidal buzzards, and dangerous rangers. In spite of the dangers, we had a great time, the sky cleared, the birds were singing, and the river dropped below the 12 foot flood stage. We were able to squeeze in two great kayak trips, a short 6-8 mile trip down river from the camp, and a 16 mile trip from up river to the camp. The buffalo river is indeed a beautiful place to see, the water was high, and flowing quickly. My experience is somewhat limited, but the high water seemed to result in faster but easier rapids, and no need to paddle. The condensed version is..... we saw many creatures, got a little wet in the bumpy spots, saw gorgeous scenery, and met some other river travelers. Altogether, more than enough reason to be there.

I spent the last few days of this adventure at an RV resort called Treasure Lake in Branson Missouri, as a guest of Alaska Bob. He was hosting an event for the Singles International, who graciously included members of other RV singles groups. Single RV'ers have to be the friendliest people on the planet. Treasure Lake is huge, over 600 RV sites, and has all of the amenities..... club house, lodge, dances, breakfasts, hiking trails, miniature golf, frisbee golf, indoor pool, horseshoes, tennis courts, shuffle board, etc..... OK, well I didn't see a lake, and there was the tornado warning at midnight, but it was very nice, not my kind of place, but very very nice. Branson, has hundreds of things to do, music shows, restaurants, variety shows, museums, dinner shows, theaters, comedy shows, etc.... very nice, but once again, not my kind of place.

In spite of being out of place in Branson, I had a great time for the entire 3 week trip. The people that I knew, and the people that I met were all truly engaged in the business of living, and they just sort of sweep me along..... Sometimes that is just what I need.

Notice the tree stump lodged in the tree near the center of the picture, must have been some very high water... Click on the picture for a better view

Blue heron nests

A herd of turtles

This is where blog pictures come from

These three guys were spending many days on the river

Lunch on the river

2009-05-20T19:46:00.007-04:00

May 17, 2009

2009-05-17T11:06:00.001-04:00

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.

May 8, 2009

2009-05-08T14:51:00.005-04:00

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.....

May 4, 2009

2009-05-04T18:52:00.004-04:00

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

April 28, 2009

2009-04-28T09:34:00.004-04:00

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.)

April 26, 2009

2009-04-26T19:45:00.003-04:00

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.....

April 23, 2009

2009-04-23T18:26:00.002-04:00

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.

April 22. 2009

2009-04-22T20:59:00.000-04:00

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.

April 17, 2009

2009-04-17T20:06:00.003-04:00

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.......

April 9, 2009

2009-04-09T21:09:00.001-04:00

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.

April 3, 2009

2009-04-03T09:33:00.002-04:00

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.

March 28, 2009

2009-03-28T09:16:00.001-04:00

I have reread my postings, and noticed a huge omission..... Thank you, thank you, thank you to all of my family and friends, you have been a big part of the last couple of months. My family here in Pa, my friends back in Ca, and my traveling family have all bent over backward to make my life easier. I cannot express how unworthy I feel, and how grateful I am. I really hope that this event will make a permanent change in my view of the world.... less cynical, and a bit more empathetic.

In spite of my complaints with the medical industry, they have been supplying me with excellent treatment and care. Without them, I would be looking forward to a slow and painful death. With that in mind, I guess that I owe them a heartfelt thanks.

It has been almost 2 weeks since my last surgery, and 1 week since the tubes were removed from my body. People have been asking how do I feel, does it still hurt, etc..... I don't want to fall into being a complainer, but I think that it is better to put it here, than to have to tell everybody individually.

My body parts, that have been repeatedly violated by medical tools and procedures, are not back to normal, are apparently still not healed, and are doing their jobs under protest. It is not unbearable, but constantly annoying. My GI tract, which was not the subject of any procedural violation, is making some progress toward normal. I guess that the anesthesia alone has caused a huge disruption in many of my systems. Who knew that ones life would revolve around trying to constantly be within minuets of a bathroom. These are the things that they don't tell you up front...... I am not sure what would happen if they did.

I just wrote and deleted a long paragraph bitching about all of the things that are wrong with my situation. Things could be better, but they could also be so much worse. Thank goodness that I caught myself in time. Instead, I want to mention on all of the good things that are happening and will happen. Western Pa. is an lovely place, all mountains, trees, and rivers, and as I recall, spring in Pa. is a beautiful thing. It is great to be able to spend time with my family, and to reconnect with some people that I have known since high school. Additionally, I should mention that I have full hookups (courtesy of my sister and brother in law), and there is a Walmart just a few miles away...... a full timers dream. And..... I take some satisfaction in finally getting some return on all of the health insurance premiums that I have paid for the last 15 years. Who knew that it would be one of my better investments. LOL

Anyway, life is about as good as it could be under the circumstances.

March 22, 2009

2009-03-22T10:41:00.005-04:00

I was unsuccessful altering the "Consent to Anesthesia" form. I just hate it when I have to admit losing an argument. When I inquired about the "others" that might preform "medical acts" upon me, it was suggested that "you may not want to have this procedure done today"...... This was repeated several times. I did find out that it is a highly trained nurse that actually administers the anesthesia, that the Anesthesiologist oversees at least two operations at a time, and will be there in the event of problems. I guess that presumes that there is no problem elsewhere, and that the nurses are "highly trained" and not "in training". In any event, it was sign or no service, so I caved in, and survived.

So, I had my surgery on Monday, and it turned out to be far more complicated than expected. It appears that the Doc. in Az. did not attempt to remove the bulk of the tumors, but instead, merely took samples to confirm his opinion that the the bladder should be removed. I don't want to be to hard on him though, I think that he had every reason to believe that the cancer was far advanced..... He knew that the cancer was the invasive type, (from a prior biopsy), and that it covered 80% of the bladder wall. I had told him that my symptoms may have gone back 2 years. (I may have been wrong on this point, it is possible that I did have a UTI, or a series of UTI's, back then.) I know that he was very surprised when the pathology report said that the cancer had not invaded the bladder muscle, and did recommend another attempt to save the bladder.

In any event, my team spent 3 1/2 hours removing all of the cancer that they could find, and placing a stint into each of the tubes that lead from the kidneys to the bladder. They felt that the openings into the bladder might swell shut, causing the kidneys to back up, and cause sever complications. I am not able to describe what a swollen bladder feels like, but I can say that it is not recommended.

I was, and still am, surprised at the debilitating affects of the cancer fighting procedures, the anesthesia, and the pain controlling drugs. The combined effect is to bleed away your resolve and good nature. Trying to function normally while under the influence of pain and drugs is nearly impossible, and the bad part is, that you know that you are doing a bad job of it. So far, I have endured little compared to the others that I know of, but I am beginning to understand the fight with cancer, and have a new found respect for the people who have traveled this path.

I can't let this post go with out relating a light hearted moment..... On the trip east, I had the pleasure of much conversation with Sandy. (Those of you that know Sandy, or me, will understand. Lol) Traveling for 5 days with someone that you really don't know, turned out to be very interesting, and informative. We had the chance to exchange many ideas, theories, and opinions. One of Sandy's ideas is that you need to ask the universe (God, for the religious among you) for what you want.... specifically. Well, there I was, lying on a bed naked, surrounded by attractive women, with all of their attention on my genitalia....... What came next was not the procedure that one would expect or want..... Guess that is when I realized that I wasn't specific enough. LOL

THE PROGRONOSIS.....

Bladder cancer comes in 4 stages:
Ta, Involving the mucous lining only.
T1, Penetration into the lamina propria..... apparently this is the layer between the mucous lining and the muscle.
T2, Penetration into the muscle of the bladder.
T3, Penetration through the muscle of the bladder.

I am not clear on this, but it seems that there is a distinction between invasive, and non invasive cancer as well.

My cancer is the invasive type T1. At this point my cancer is not life threatening. It is however, bladder threatening. I have a bit less that a 50% chance of still having a bladder in 5 years. The doc. thinks that it is worth trying to save my bladder.

This type of cancer almost always comes back, and is always a threat to penetrate the bladder muscle, and set up camp in my other organs. Regardless of the success of the treatment, I will need to have regular monitoring, every 3 months at first...... To be clear, this is not a scan or a blood test, this is an up close and very personal, lights, camera, action kind of look see. The Doc. thinks that it is very unlikely for the cancer to spread if I maintain this schedule. I am trying to remain aware that, though uncomfortable, treatment and monitoring has to be much better than death.

It is still possible that the trauma to the bladder may render it nonfunctional, even if the cancer is eradicated.

THE TREATMENT.....

I have a month to heal up, and for my bladder and other systems to begin working normally again. I am told that I should feel better every day for a while. In one month...... another look see, and another bladder scraping..... Like I said, they can't seem to get enough. The Doc. says that my last surgery was so involved, that after the first couple of hours, the entire bladder was so inflamed, that it was difficult to be sure that he got every last little bit of the cancer. I guess that this is standard practice in cases like mine.

After that, another month to heal, and then a BCH treatment once a week for 6 weeks. BCH treatment is a process of filling the bladder with a weak form of tuberculosis, which seems to inspire the bladder's immune system to kick into high gear. For reasons that are not fully understood, the newly vigilant immune system recognizes the cancer, and goes after it as well as the tuberculosis. Just an aside.... My hat is off to the first person to have this done..... I can just picture the bedside conversation.... "You see, we have this idea...... we want to put a deadly disease into your bladder"......

If my math is correct, it means about 3 ½ months till the end of the BCH treatments, and brings me into the first part of July.

THE PLAN.....

I expect to stay in this area until the end of my treatment. If possible, I will visit the rest of my family in Pa. and Maryland, and perhaps manage to visit with the Win's as they travel through nearby states. When my treatment is complete, I will head back to Ca, and try to resume my normal life.

March 18, 2009

2009-03-18T16:26:00.002-04:00

Hello all, I survived a 3 1/2 hr. surgery on Monday, and still feel out of it. This may be because of the anesthesia hangover, or the pain meds. that I am currently taking. The short story is, the Doc. says that he got all of the cancer, but that he won't know the prognosis until the lab report is done..... Maybe Friday.

Anyway, I will fill in the details when I feel better......

March 11, 2009

2009-03-11T19:06:00.004-04:00

OK, so I went to the hospital today for my pre-op stuff. They took samples, pictures, and answers to many questions. Many forms were completed. I was also given much information regarding the upcoming “procedure”. I am guessing that the old “operation, or surgery” is now politically incorrect. I think that the most important thing accomplished today was the information gained on the parking situation..... really valuable stuff in a crowded city.

In an effort to slide into a more healthy lifestyle, I decided to actually read the supplied paperwork. Interesting stuff..... I won't bore you with all of the details, but I did find that the “CONSENT TO ANESTHESIA” form was somewhat disturbing. It warns of some risks..... you know, little things like “death, cardiac arrest, cardiac arrhythmia, adverse drug reaction, corneal abrasion, damage to the throat and vocal cords, respiratory problems including pneumonia, damage to arteries or veins,headaches, brain and nerve damage (including paralysis, loss of function, and coma),” etc.....

I know that they have to do this, however, what came next is priceless.... “.....this is a teaching facility and that residents, fellows,students and others may assist with or perform all or parts of the administration of anesthesia or performance of medical acts"....... (bold type added for emphasis) I am thinking that students would be bad enough, but others????? This is not a typo, "others" might do "all". Who might the "others" be??? I am picturing the Doc. saying something like “OK kid, why don't you do this one, and try not to screw up ...... again.” Of course, the last line is: “I (the Doc.) have given no guarantee or assurance as to the results that may be obtained."

I think that it is always important to inspire anyone working for you, or on you, to do their best. I really want to be a good patient, and not annoy the people that I am depending on, but they must be kidding. I guess that people just don't read things. I am expecting the old: Doc. says “don't worry, we are not going to let a student work on you”, I say, “but that is what it says”...... and repeat, and repeat. I will try to figure out a way to get rid of that clause without making him angry. Maybe make them cross it out, and then, a bit later, apologize and declare that I am just very nervous. Wish me luck with this one.

March 9, 2009

2009-03-09T16:48:00.002-04:00

Well the good news ....... I have a urinary tract infection........ Doesn't sound like good news? At least not something to be proud of, or to publish?

I think that the Doc's pessimism about saving my bladder was caused, in part, by the amount of pain I was experiencing more than 2 weeks after the first surgery. I have been having less pain daily since starting the antibiotics, and have now quit taking any pain meds altogether. If the pain was caused by the UTI, then maybe I am in better shape than we thought. I hope so.

I may be just clutching at straws, but am inviting you to clutch with me.....

March 6, 2009

2009-03-06T21:31:00.003-05:00

Hi all, I am with my brothers and sisters at Hershey Pa. at the state wrestling tournament. Am having a good time.

I have another surgery scheduled for Mon. March 16. The Dr. is going to have a look see, and another bladder scraping..... (Seems that they just can't get enough of bladder scraping.) Trying to get the rest of the cancer out. After that he is suggesting something called BCH. A solution that acid washes the inside of the bladder. Further research is necessary.....

He is dubious about saving the bladder even after the cancer is gone. He says that there may be so much damage to the bladder that it will not work properly, and life may be better without it. Something about scar tissue, and lack of stretchability. I guess that we will see

March 4, 2004

2009-03-04T19:28:00.002-05:00

Well, It was an unremarkable visit to the new Dr. I guess that I didn't expect much as he just had reports to look at. I am to call his office tomorrow morning, and make an appointment for a look see and surgery. (bladder scraping). This is what the Dr. in Az. recommended after seeing the last lab report. Can't wait..... LOL

March 2, 2009

2009-03-02T20:17:00.000-05:00

I discovered early on that telling the same grim story over and over was somewhat depressing. I think that I would rather spend my energy interacting with family and friends about fun stuff..... where are you, what are you doing, good jokes, stories, and gossip.

As always, I welcome all comments, e-mails, and phone calls.

A brief history:

I went to a clinic early in Jan. thinking that I had a minor urinary tract infection, but found out early in Feb that I had bladder cancer. Looking back, I could trace some symptoms back about two years..... I know that I should have been more diligent regarding these symptoms, but.....

At first, things seemed pretty grim, 80% of my bladder lining was covered with tumors. The Dr. felt that it was unlikely that the bladder could be saved, and if the cancer had invaded the bladder muscle, I had a 50% chance to survive 3 years. I thought it was a death sentence.

I had surgery on Feb. 16. I won't go into the details, but that Dr. boldly went where no man had gone before, with tools that would be illegal to use on a terrorist. The Dr. could not get all of the cancer, and still felt that the bladder could not be saved.

Then..... Feb. 23, good news. The lab examined the samples, and declared that the cancer had not invaded the bladder muscle. The Dr. now thinks that the bladder may be saved, and recommends another unspeakable procedure. If the remaining cancer can be removed, I can likely live a reasonably normal life.

I traveled to Pa. to be near my family, and to seek treatment with the specialists in Pittsburgh. I have an appointment on Wed. March 4.

I cannot end this history with out giving thanks to my family and friends. I was, and continue to be, humbled and overwhelmed with the caring and kindness that I received. My perspective has been forever changed.