June 30, 2009

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

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

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

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

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

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

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

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

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