Saturday, March 28, 2009

March 28, 2009

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.

Sunday, March 22, 2009

March 22, 2009

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


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.


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.


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.

Wednesday, March 18, 2009

March 18, 2009

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......

Wednesday, March 11, 2009

March 11, 2009

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.

Monday, March 9, 2009

March 9, 2009

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.....

Friday, March 6, 2009

March 6, 2009

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

Wednesday, March 4, 2009

March 4, 2004

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

Monday, March 2, 2009

March 2, 2009

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.