2nd BCG Maintenance Series (1 of 3) - January 29, 2009

The Biohazard Man is back, and feeling kind of... OK. Based on my experience last time with 1/3 BCG dose, I was expecting this one to be a cake walk. It was not, but it was MUCH easier than the full or half doses before. I wonder if I really got the right dosage last time. No matter. A few things were different (and more disgusting) this time, so to protect our more sensitive readers the details have been relegated to the Series 2 Backup Page (7/10 on the gross-out scale). I have created a "misery index" to help compare each time, and while it's completely subjective, it might help to explain how I'm feeling. The scale-up duration is measured from the onset of symptoms to the peak, after which it tapers off. While the taper off is still miserable, knowing it will be better each time rather than worse takes all of the edge off. I also rate the peak misery on a 1-10 scale. I have never experienced a 10, and I hope that I never will. Here's how it shakes out comparing the last three to this one:

LAST TIME
Series 1 (1 of 3) Misery
scale-up duration 2.25 hours, peak 8/10
Series 1 (2 of 3) Misery
scale-up duration 4.00 hours, peak 9/10
Series 1 (3 of 3) Misery
scale-up duration under 1 hour, peak 1/10

and TODAY

Series 2 (1 of 3) Misery
scale-up duration 2.25 hours, peak 4/10

I decided after sleeping on it that the words above don't really capture the difference well, especially for visual people (like me). So I came up with a BCG Relative Misery graph that appears to do the trick. Hopefully it's more clear now! I shall continue to collect data and post updates on the
Series 2 Backup Page as progress continues.


So now you can quickly tell it was not awful this go-around, bu
t not nearly as easy as the last time.

In other news, the diet and exercise continue. Though we need to be more careful on the diet. And I still hate the exercise. Will try to get equipment to do it at home, which will allow me to do it in the morning and get it over with while also reducing the logistics and associated time wasted (going to the gym, changing, changing back, leaving the gym, second shower, etc.)

In still other news, what every Biohazard Man needs is a good Biohazard Chick. So that's why we have the picture at right. In the interest of full disclosure, Mrs. Biohazard is not happy about this at all, as she fears you all will think this is her (it isn't), and she is much more attractive than the girl in the photo (certainly true, apologies to the model). But since Mrs. Biohazard was unwilling to pose for a risque photo of this nature, we are left with what we can find on the internet...

And Now For Something Completely Different! - January 28, 2009

As if male bladder cancer patients did not have enough things to worry about, here's an interesting post that suggests that our behavior during our 20s may have some influence on prostate cancer, too! While this is far from hard science, the entertainment value is priceless. Click below for details. (For the serious minded readers, this is pretty much a joke, so relax!)


EVERYBODY PANIC!!!
(PG-13 content warning)



Doubtless now is the time to ponder, did I do too much... or not enough? And I wonder who keeps a detailed log of such things...

Judgment Day #2 - All Clear - January 22, 2009

What does one do on Judgment Day? Today I woke up at 5AM and lay in bed a while. I prayed long and hard - being scared helps one do that better. As it used to be said, there are no atheists in the battle trenches, and I would add there are precious few (if any) in the cancer trenches. I got out of bed early and busied myself with routine things. Did a short devotional for the day from Morning Exercises (book details in the recommended reading section in the column at your left). Answered a couple of work emails, forwarding on actions, and wondering how they would get done if I disappeared for several months - as might be the outcome. Strangely enough the musings were not morbid, but more practical. The fact that I still really care about even silly things getting done is a sign of a good attitude, I think. I'm slightly ashamed to admit that having a good attitude is still a pretty new experience for me. I balanced the checkbook and paid a couple of bills. I normally drink quite a bit of tea in the mornings, but I held off because of the impending procedure. It's not required, but doctors tend to do better if you don't pee all over them while they are working. They are kind of funny that way. Go figure. Managed to stay nominally busy until time to shower and leave. I didn't feel certain about the outcome or even confident at all. But it seemed far less stressful in anticipation this time. Don't get me wrong, I was stressed out and biting people's heads off at work all week (some with reason), but the tension built up much later and was not as intense as three months ago.

Since then I've had a month of BCG treatments/recovery and two months of work and quiet relaxation since the last time. And the stress buildup last time was so great that after I got the good news, I crashed and burned with a cold for 3 days. The first one is the biggest hurdle, but the odds don't really improve for the second. My attitude and commitment to good diet and lifestyle (including the hated exercise) have been steady, if not improving. I do feel better, and shedding pounds and inches has been a pleasant side effect. A lot of cancer patients lose weight and waste away to nothing as the disease (and even more often the treatments) rob them of appetite and energy. I am quite pleased to be losing weight for entirely healthy reasons, albeit driven by the threat of the cancer. As I said to a co-worker some months ago, getting cancer may be the best thing that's ever happened to me for health and attitude. I still think it must be true.

It's about a 50 minute drive from our place in the mountains to the Urology Clinic in Salt Lake City. We left at 10AM for our 11AM appointment. It was about freezing and the weather was a light drizzle. Less than two miles from the house we take a freeway through a canyon. The freeway was closed due to an accident. All detours would take an extra half hour or more. We waited a few minutes, and the police opened the on-ramp. We proceeded for about 100 yards, then came to a dead stop for 30 minutes. When they finally let us through, we saw they had moved over a dozen vehicles to the side of the road, all of which had clearly spun out. Clearly this was the result of wet, icy, slick roads and Utah drivers' chronic inability to merge. In Utah the word "Yield" means to proceed at will and everyone (who has the right of way) will have to get the hell out of your way. I'm surprised I don't see more accidents. But after a few years you get proficient at dodging clueless drivers. We proceeded slowly through the canyon to the lowlands, which were encompassed in nasty smog. The Salt Lake valley gets awful winter inversions, and instead of cleaning the air, this drizzle storm had caused it to get worse. We made our way gingerly south and I called the Urology Clinic at 10:50, begging permission to be 20 minutes late. Thankfully it was no problem. Delaying the inspection would definitely have mounted the tensions!

At the clinic we were shown into the exam room quickly, but there was still over half an hour wait for the doctor. Either they were running late, or they had put another patient or two in front of me. I focused on relaxing and breathing for a bit, and my wife helped out with a very nice scalp massage. Dr. Hopkins appeared abruptly with his assistant, after greeting and handshake and some small talk (he's a big University of Utah football fan and had witnessed the recent bowl game where the undefeated Utes handily spanked the overrated Alabama Crimson Tide), we got to business.
After the initial shock I was able to relax and breathe deeply whilst murdering my two stress balls. "I've looked at three quarters of your bladder and it's all clear," the doctor announced. "Keep up the good work!" I replied gamely. "All clear!" was his immediate response. The unpleasant bit was over in less than sixty seconds. Everyone was happy with the results, and my wife seemed especially so. Perhaps she was more keyed up this time than I was! I gave Dr. Hopkins the results of my third BCG treatment in the last series, while telling him that the side effects were greatly reduced with the 1/3 dose. I suggested we could start with a half and drop it, but he said the evidence of equal efficacy was good and we would do all three at the lower strength - even more good news!

So now all is well. We shall celebrate this evening with some fresh fish - Bluenose Sea Bass, cooked in our Big Green Egg on a plank of Pacific Northwest Alder wood Add to that some organic greens and fruit, and an outstanding bottle of Pinot Noir from EIEIO winery, made by my friend and wine genius Jay (I discount for no-one) McDonald. It should be an excellent time. I'm pleased that we are able to tell the surgery-monster, "Not today, sucker!" And even though the trauma of the scoping is present, it will be mostly gone by morning. The photo at left captures the essence of the after-effects, though!

Clearing the Mind - January 17-18, 2009

Last week was busy and stressful, and consequently the time passed quickly. Stress is building up from the countdown to the next cystoscopy, now less than 4 days away. On top of that my employer for the past 16 years, a Very Large American Aerospace Corporation (VLAAC) did a major restructure of our little piece last year. The plan was for my Utah group to be combined with two other groups in more than two other locations to form a New Medium-Sized Specialized Product-Oriented Organization (NMSSPOO) with headquarters and most staff here in Utah. We were proceeding down the path to plug in a new process infrastructure to support the new picture, when last week we got an email that aborted the new organizational structure and linkages, instead substituting a new, different, and completely unknown set of connections. So the way our NMSSPOO plugs into the VLAAC is completely different, and it appears our NMSSPOO is now a small part of a Large Specialized Product Oriented Organization (LSPOO). (Be advised that these terms and acronyms are my fabrications to protect the guilty, but they are not too far from the truth!) After a few days of research and running amok, we believe it could be that the new deal is better for us and could make life easier. But being a control freak (Myers-Briggs ISTJ) means that I intensely dislike chaos, disorder, and randomness. So while God is in control ultimately, I still fight for control of my environment locally. So here we have a double whammy - no control over the medical outcome, and my precious structural model at work blown away in favor of (hopefully temporary) chaos and uncertainty.

The situation called for some drastic action, so I did something I have not done since last August - and it was long overdue. I went for a motorcycle ride. Did about 100 miles yesterday (Saturday) and another 100 miles today. Sure it's January in Utah, but the sun is shining, the roads are (mostly) clear, and technology is our friend. It took over an hour to prepare the bike for the street - checking fluid levels and tire pressures, finding winter gear, wiring in electronics, warming things up. We live in the mountains, a few miles from the base of a ski resort, while most of the population lives down in the Bonneville lake bed on the other side of the mountains. I headed West towards the lowland and civilization, as it's generally several degrees warmer there, both summer and winter. What I forgot was the winter inversion. While it WAS a bit warmer, with temps ranging from 30 (degrees F) at home to 39 in the valley, there are climate conditions that trap windless air and hold it close to the ground. This air collects all dust, vehicle, and chimney pollutants and becomes noxious after a few days. (Click here for photo) While yesterday's inversion was not the worst we've had , it made the Wasatch Front an unpleasant driving destination. Add to that the fact that people were out and about, plus every traffic enforcement cop was out and hard at work. I saw thirteen (yes 13) of them in the space of three hours, and about half of them were busy writing expensive citations. Thanks to experience and electronic countermeasures I was able to avoid meeting any of them in person. I made my way down the new Legacy Parkway and returned north via Redwood Road, where I saw several locals kicking tires at Salt Lake BMW, a well-known motorcycle dealership. Looped up to Ogden Municipal Airport and had a late snack at Doolittle's Deli. (Restaurant review HERE) Despite the weather, traffic, and enforcement, the concentration required to ride safely was a great aid in clearing my mind. Sadly, it only lasted about half an hour after I was done, so I resolved to go again the next day, but to head in the opposite direction!

So today I mounted up and headed East. While the air was clear and the roads were empty, it was a indeed colder - starting at 30 degrees and ranging down to 25 or so. I know this as the bike (a 2004 Honda ST1300) has an air temperature gauge built in. And because I had left my gloves, jacket, and helmet in the garage, they all started out at 30 degrees as well, giving me a thermal disadvantage from the get-go. Even with heated seat and heated grips cranked to full power, I was cold for the first 25 minutes, so I stopped to take a couple of photos and walked around a bit. This activity seemed to even out all the warmth, and the balance of the trip was quite comfortable, despite the colder temperatures. As you can see from the photos (click on any photo to enlarge), the sky was deep blue and nearly cloudless. Air was crystal clear, and the roads were empty. Motoring through the countryside revealed some spectacular photo opportunities with the late afternoon flat light of wintertime, and maintaining tight control of the vehicle in the environment was a solace to my spirit. I passed through the tiny towns of Croydon and Echo and made my way up Echo Canyon, where the red rocks were displayed beautifully in the cold sunlight. The roads were nearly empty of traffic, even on the Interstate. Looks like everybody stayed home to watch the NFL football playoffs. Today's winners go against each other on February 1 in the Super Bowl. That made it good for me. As I passed by Echo Reservoir, I observed a handful of ice fishermen busily fishing for ice. They stared long and hard at me, probably supposing that I was the bigger fool this day. I beg to differ, being the one with the heated seat, hand grips, and satellite radio in stereo coming through the helmet headset. Even with no ice or fish to show for my adventure, I would not trade my improved state of mind for either or both! The cold temperatures made it easier than usual to relax my pace, enjoy the scenery, and take a few photos. I doubt if I ran over 100 MPH more than a couple of times, although little clears the mind as well as air at arctic temperatures forced into your lungs at speed... I even paused long enough to note how the wind had carved the fallen snow into feathery ice crystals, pictured at the top of this post. As I made my way homeward the setting sun hit a rock formation to my right that I had passed dozens of times in the past without notice. These outcroppings with a lighter colored strata at the top looked for a moment like a gathering of blond giants standing around having an informal gab session. When I stopped to take the photo, the image melted into rocky reality, but still made the nice shot at right. All in all I am ready to work hard for the next few days, and all of you can join me in praying hard to wish for a positive outcome and more BCGs instead of more surgery. Even cancer looks better after a great motorcycle ride!

Truly Inspirational Story - January 15, 2009

A co-worker who has no idea that I'm battling cancer sent me a link with the following note: "This video may change how you think about your day and maybe even your life." I have only one week now until Judgment Day #2. Will the cancer be back or will it not? While I have done most everything I can think of - BCG, diet, exercise, vitamins, positive attitude, and magic powder from the internet (PectaSol MCP), there's still a fair chance that the cancer might have started to wage a comeback in the past 3 months. While I hope that's NOT the case, the outcome is truly in God's hands. And given the circumstances of others with cancer, worse diseases, or even more unimaginable difficulties, I have no room to complain of the outcome in either event. Best case for me is 3 more BCGs, worst case some life-changing surgery. But look at Nick Vijicic's story in the video below, and it's crystal clear to know that overcoming difficulty is not only possible, it can be joyful as well. Check it out - it is well worth the five minutes of your time investment. When you're done, check out Nick's website.



Be sure to check out
Nick's website at http://www.lifewithoutlimbs.org/.

TURBT and BCG Q&A from New York - January 8, 2009

I got a contact via Wellsphere with some concerned questions. Susan P. from New York was not happy with the discomfort her husband was experiencing after a TURBT and some rounds of BCG therapy. She wrote, "My husband (age 59) was diagnosed April 2008 with Grade 3, T1 flat cell with CIS. He finished his last BCG November, 2008, but since April has never really felt better after BCG treatments. He is continually tired, burns during urination, severe lower back aches. Should the side effects from BCG have subsided by now?"

Keep in mind that I am not a doctor, and my firsthand experience with all this bladder cancer stuff is limited to a sample size of one - just me. I have read David's blog, who had the same diagnosis as I did at about the same age, successfully treated with BCG. And I have read some of Neil's blog, who is older and had similar diagnosis, but has undergone radical surgery. So Susan, if you are reading this, a better forum to ask the question might be the Bladder Cancer Webcafe, which has the benefit of hundreds of experiences - though the answers may be somewhat random. Here are the answers I gave to her questions based on my experiences and research:
Hi Susan,

I'm sorry to hear your husband is dealing with bladder cancer. It's also disappointing to hear he's suffering from some side effects. The irony of bladder cancer is that the disease really doesn't hurt at all. I keep telling people the only thing that hurts is what the docs do to me! G3-T1 is the same as mine, with mine being full blown tumors and no flat cells or Carcinoma In Situ (CIS) as yet.

I think it's probably a good news bad news situation. The good news is that the treatments are clearly doing something. The bad news is that there are side effects. The ones you listed, burning during voiding, extreme tiredness, severe backaches are typical symptoms,. David Ferdinando in London (http://my-bladder-cancer-journey.blogspot.com/) had identical diagnosis as your husband at age 50, and had similar symptoms after treatment. And to add to the bad news, it does get worse as the BCG treatments progress.

I have not had symptoms as bad as these, as I am a bit younger and I don't have the CIS. Let's take his symptoms one at a time. First, Backache - The BCG causes an inflammatory response in the bladder lining. It also directly attacks cancer cells, such as your husband has in his CIS. If the inflammation is near either ureter, the path from the associated kidney can be partially restricted, and this causes severe lower back pain below the kidney and to the side(s). I did have this symptom with BCG and my doc recommended that I take four (4) Ibuprofen tablets every six hours. This did the trick, and I personally did not have recurrence of the backache after 24 hours from a BCG. Again, I'd suspect that the CIS is to blame. In rare cases, he might also have a stone, though it's pretty unusual. If so, you would likely observe bright blood in the urine.

Next, Tiredness - the inflammatory situation in the bladder causes the body to react as if you have the flu, so there can be cramps, aching, mild fever, and other issues. If your husband's immune system is not in tip top condition, which could be a consequence of bad genetics, age, having fought other major illness, sedentary lifestyle, poor diet, obesity, etc., the tiredness can linger on for a month or more. Since CIS is really several active cancer sites in the bladder wall, the BCG may be binding directly to the cancer cells in multiple locations in the bladder, and it takes some time for the body to find a way to kill them off. Thyroid issues can also contribute to making the tiredness worse. This condition is easily diagnosed with a simple blood test. Ask your regular doctor - not really the realm of urologists...

Last is the burning. If your hubby is particularly sensitive in the urethra (and what man is not?), or if there is enlargement of the prostate, the TURBT and BCG catheter processes can be troublesome, and the irritation will continue for a while. This can also happen if the person doing the procedures is heavy handed or inexperienced. Some docs let med students or other assistants do some of these in surgery when the patient is unconscious and cannot object. I say let them practice on somebody else! I did have burning for two months after my first BCG series, and it slowly got better. I was concerned that it might be a bladder infection, so I got a urinalysis after a month - all clear. So I just had to tough it out. The second series, having only three BCG treatments, was not so bad. Or maybe I'm getting tougher down there...

What your husband is suffering is not the norm, but it's also not out of the range of probability, and the symptoms may well indicate that something is actively battling the cancer - which is what we want. While it all sucks - compared to chemo or radiation these side effects are a good deal.

If his doctor is not willing to spend a little time to tell you the same details I just shared, it might be time to look for another one. Most medical plans pay for a second opinion on cancer diagnosis - mine did. Do this while you still can. I fear socialized medicine is coming fast to the US, and freedom of choice will be gone.

Best of luck!
SK
I can't claim that my insights here represent any level of brilliance. If they can alleviate some stress and concern for anybody, I will be pleased.

New Year - Path Ahead - A Good Story - January 3, 2009

It feels a bit odd typing in 2009 for the date. Last year went by quickly. Busy with work and work related travel through March, surgery in April and again in May, BCG in July/Aug and Oct/Nov. Only a few moments to work, play, and breathe in between! Now what's in store for this year and beyond? As most of you know, I have been cancer-free since May 22, 2008 - two days before my 49th birthday. While it was a nice present to have, it's not been very long in the big scheme of things. Except for a very few close friends, most of the folks that I work with and socialize with have taken the news of my cancer diagnosis the way I used to - not wanting any details, and desperately eager to receive any news along the lines of the cancer is now ALL GONE. That news is greeted with relief, and again no desire for details, as the only other options must surely involve a premature death and other unpleasantness. Having recently "been there" attitude-wise, I think I can understand it. So those of you in that category should continue to be assured that the prognosis is good, have a happy new year, and skip ahead to the last paragraph to read the very encouraging story I got from a new contact in Canada last week.

The rest of you will want to understand that Bladder Cancer is a dogged enemy. Chances of recurrence are extremely high. That's why radical surgery has the best survival statistics, albeit with severely compromised lifestyle (mostly not evident to the public). For Grade 3 disease, which is what I had, the stats show something like 80% chance of recurrence within five years. Only after that can one begin to breathe a bit easier, and annual inspections FOR LIFE guarantee that I will never be able to rest assured that it's ALL GONE. That fact is not so bothersome, because the name of the game in managing any serious long-term disease is to stay ahead of it - to postpone mortality from that cause until another (hopefully "natural") cause does the trick. If I can avoid recurrence for two years, the prognosis for five years is improved. So for breathing easy, there are six months done and eighteen more to go, then another 3 years before I can fully "relax." Does this mean that I will be able, after 4.5 years of "all clear," to go back to my sugar-laden fried food and chemical preservative rich diet? I doubt it. For one thing, in addition to BCG and prayer, diet will be the single biggest contributor to avoiding recurrence. The diet is intended to stop "pushing the buttons" that could trigger cancer and instead eat things that show evidence of actual cancer fighting. So abandoning it seems risky and unproductive. And what of the much-hated exercise? I suppose that continued "all clear" signs will provide the positive motivation I need to continue. And, of course, there are other benefits, especially for the heart, which is something that I was already at risk for before all this cancer business started. So it continues - I went today. And I hated it.

What's the path ahead for 2009? We start the year with another cystoscopy (visual inspection) in less than three weeks on January 22. These medically non-invasive (albeit personally VERY invasive) procedures continue quarterly for the first two years. If clear, we follow that with three weekly BCG treatments, then wait until late April and inspect again. If all clear then, no BCG treatments - they space out quicker than the inspections. Next re-inspect in July with 3 more BCGs, then October inspection only, and done for the year. Quarterly inspections continue in 2010 in January, April, and July, then go to every six months for a while. If ANY cystoscopy shows anything of concern, there may be a biopsy in the office, but more likely I shall have to get a third TURBT surgery to see what it is. Based on lab results, other more drastic surgeries will likely follow - and it's best for all of us NOT to focus on that outcome at all. Having a positive attitude about prognosis has a good track record in the cancer game. So all of you can help keep me on track with that. Be advised that having a positive attitude about exercise is not a requirement...

In other news I got a comment posted to the blog last week from Phil K. in Canada. He was recently diagnosed with bladder cancer and just had a TURBT last week. The doctor's impression is that it's a small, very low grade tumor, and that Phil will not have to do any BCG or any follow-ups except the occasional joy of cystoscopic inspections. He was pleased to hear that my diet includes chocolate (70% or greater) as a cancer fighter. There's been quite a lot of bladder cancer in his family, but all the outcomes have been good. Here's some of the story in Phil's own words:
"My father had it, and so has my sister. Both of them had TURBTs and my father had three LARGE tumors removed that were higher grade and he was tumor free for nearly 6 years. Another TURBT removed it. My sister has had one removed, and goes for her regular checkups. I'm taking Vitamin C, Cod Liver Oil, Vitamin E and Flax Seed Oil. I was told that chocolate is a cancer killer and that I should eat broccoli, vegetables and a higher fibre diet and drink plenty of fluids. (I think I'm going to float away). I am avoiding refined sugar, caffeine, and sugar substitutes when possible. I'll be checking your blog and staying healthy."

So there are lots of good bladder cancer stories out there. Their lack of drama makes them poor candidates for blogs, which perhaps explains the absence of good blog success stories. Stay tuned here for more good drama!