1st BCG Maintenance Series (1 of 3) - October 30, 2008

I was a little surprised to catch a head/chest cold last week after my "all clear" report - for two reasons. First, my immune system is still ramped up pretty high from the previous BCG sessions. And second, the new diet also promotes health, well-being, and disease resistance. Sure, I was a bit run down from prepping for the unfair audit at work, but I had far less stress about it than many others in my group. I suspect it may have more to do with God sending me a "Don't get cocky!" message, much like Han Solo told Luke Skywalker in the first Star Wars movie (aka Episode IV). It is a lot harder to lean on God when things are going well, so I am quite thankful for the reminder!

For this BCG appointment we arrived at the office on time, but the doc was running late. As we were being shown to a room about half an hour later, Dr. Hopkins stopped me in the hallway and mentioned that he'd received an email from Dr. Lamm. Based on that we were going to proceed at FULL STRENGTH for today's treatment. I was a bit surprised, but pleased that some apparent collaboration had happened. He said he'd like to proceed at full strength for as long as I could "tolerate" it, then cut to a HALF dose. I asked if it had become a test of manhood, and he replied, "This whole deal is a test of your manhood!" and laughed. I pointed out that I could tolerate quite a lot in lieu of radical surgery, and we discussed what the maximum might be. Incontinence and inability to function due to frequency/urgency beyond the instillation day seemed to be the litmus test. This is much worse than I was wanting - yet MUCH better than surgery, or chemo, or radiation. So I resolved to "adjust my threshold of whining" and proceed. The instillation took place without incident - I'm apparently becoming a professional at tube invasions. I asked Dr. Hopkins if he planned to follow both the full dosage and Dr. Lamm's increased frequency - quarterly instead of 6 months. He had forgotten about that part, but thought we should go with the increased frequency, too! So my insistence on collaboration seems to have produced the worst of all worlds - increased frequency, full dosage, and tons of side effects to be expected!

On the way out of the office, Dr. Hopkins stopped me again in the hallway and brought me into his office to get a copy of Dr. Lamm's email. He was eager to point out the part where it stated, "It sounds like you are giving Mr. Kelley excellent care." I agreed and took the copy. It made for interesting reading. Along with providing brief background information, Dr. Hopkins asked the question: "I have typically followed your schedule, but with full dose BCG. I am writing because Mr. Kelley has asked me to ask you if you have any other thoughts."

Dr. Lamm's reply, after the compliment, was, "The data in favor of our 3 week maintenance schedule continues to increase. Richard Sylvester has recently presented data from the EORTC showing that BCG using the 3 week maintenance schedule reduces not only recurrence, but metastasis and cancer mortality as well. Remarkably, it was most effective in the intermediate risk patients, those without CIS."

This is all well and good. The next bit did give me some cause for concern:

"We do reduce the dose to 1/3 for maintenance now, but it is OK to continue full strength until side effects occur."

The problem here is one of interpretation. Dr. Hopkins took the statement above to indicate that full strength was OK until it could not be tolerated (i.e. to the point where I would refuse to take another BCG treatment). Clearly Lamm states until "side effects occur." I already had side effects from last time, as evidenced by his writeup, "He is now post 6 week induction BCG, which was tolerated with moderate symptoms." I am, of course, presuming that side effects = symptoms. And I certainly had a great display of symptoms today.* I did pour myself a beer at 7 PM, thanks to inspiration from my man Doug in Michigan. Symptoms this time were not worse than the last, but rather about 75% of the distance between Intitial BCG #5 and Initial BCG #6.*

I plan to email Dr. Lamm myself, with his report on me attached to remind him of his past work, plus a detailed description of the day's symptoms. And I shall ask him directly whether he believes that such symptoms indicate time for a reduced dosage. Given the difference between frequencies (Hopkins semiannually and Lamm quarterly) and dosages (Hopkins 1/2 and Lamm 1/3), what exact dose and frequency he recommends, and what side effects or symptoms are acceptable. I expect him to reiterate what he provided earlier:

"I would recommend reducing the dose to 1/3 and giving up to 3 instillations at 3, 6, 12, 18 and 24 months, then yearly to 6 years, then at 8, 10 and 12 years."

Anyone want to take that bet? Since we are just now at 3 months, there's a long road ahead. And I want very much to get it all correct!

*Details are described on this BCG Maintenance #1 BACKUP PAGE. Details from the Initial 6 BCG episodes are HERE.

More TURBT, but NOT for Me! - October 30, 2008

In a couple of hours I will have my first of three weekly BCG treatments for my first maintenance therapy. This was the outcome I was hoping and praying for. While it will not be a lot of fun, it's far preferable to another surgery, and certainly better than radical surgery. I will put details on the blog later.

A fellow in Toronto, HK, contacted me a couple of months ago with questions about BCG - whether it would hurt or not. I advised him that the instillation should not hurt, especially if he could relax and use the deep breathing techniques. The side effects are highly variable, and sometimes there is a lot of discomfort. On his last TURBT surgery they did "bake" his bladder for a couple of hours with Mytomycin, which is the standard of care. He then went through six courses of BCG and re-inspection, basically the same treatment and timing as my case. His BCG symptoms were worse than mine, which is not particularly meaningful for prognosis. Yesterday he had his post-BCG cystoscopy. His outcome was the opposite of mine, and new cancerous growth was observed. He is going to have another TURBT next week, on Wednesday, November 5th, and he would benefit a lot from our prayers and support.

This morning he sent me a link to share with all of you. The site is prepared by the European Association of Urology, and it has a lot of up-to-date news and findings on bladder cancer along with a host of other diseases. 2019 UPDATE: Since I originally wrote this a lot of it has become locked down for "membership only" access, but there is plenty of stuff open to view. Use the search function there to find out whatever you want to know!

Judgment Day #1 - October 23-24, 2008

The events that transpired and the emotional, intellectual, and willpower swings on this day defy my ability to describe them. I will start with a factual description of events, and we'll see what comes through. First off, the week leading up to this day has been a whirlwind of busy-ness. Your US government decided to perform a surprise audit of my company against a standard that was not required. Furthermore the standard was invented last year and the work was performed five years ago. Despite the unfairness of it all we always choose to do the right thing, and so we dropped EVERYTHING to start preparing. Normally it takes six months or more to get ready for these, with two internal assessments (and time to fix the gaps) before the official team comes in. We have voluntarily done two of these since 2003 (even though not required), and it's always come out very well. This time we had TEN DAYS to prepare, with no time for internal assessments or remediation. Fortunately we didn't see any big gaps. Unfortunately a lot of us spent a lot of hours to get ready and stand by to fetch any piece of data desired by the audit team. I just received an email from my boss with the results of today's outbrief. The general who ordered the audit flew in and heard the entire report and said, "I see nothing but good here." So we did well, even if it nearly killed us!

This situation did create a scenario where I was working long hours and weekends (though far fewer than my boss or others), especially on Wednesday, and I had no time to contemplate the upcoming procedure on Thursday. That's the good news. Bad news was tiredness and lack of sleep, which at least allowed me to sleep through the night before in dreamless exhaustion. I got up late and went through the mechanics of shaving, showering, dressing, etc. Did some work on the computer and in no time it was time to go. During the hour drive I worked on my deep-breathing relaxation technique. This helps the time pass quickly. After signing in we had a short wait before being shown into a new and different room. This was a much bigger place with a full surgical table, so I supposed that Dr. Hopkins would be able to do a biopsy right there if he needed to. I gave the obligatory urine sample and disrobed from the waist down, and lay down in the supine position with a paper blanket for modesty. I did more deep breathing for about 15 minutes and then Kathryn massaged my scalp to help me relax. The doc and his nurse came in like a whirlwind. He smiled, greeted Kathryn, and shook my hand. He asked me how I was feeling, and I told him, "Great!" He said, "I'm about to change all that!" It was funny, and it was also true. I looked at the nurse, who was holding a big cotton ball, and told her, "We've got to stop meeting like this!" eliciting a wry smile. Dr. Hopkins explained that he had not contacted Dr. Lamm yet, but that he would today, as he felt confident all would be clear. He and the nurse assumed their positions and looked at me. I started slow, deep breathing through my mouth and nodded. As they proceeded I can tell you that it is MUCH WORSE than the BCG instillation process, but I handled it much better than the first time last March.

My two company-provided stress balls got a vigorous workout (interesting that I have NEVER needed them at work!), as I maintained deep breathing. We were able to talk to each other, and soon he announced, "The right side is very clean - a little scar tissue from where I did surgery. " A few seconds later, "The other side is clean, too." And then it was over. Prepared in advance, Kathryn gave him a note to sign for work absence to do the BCG treatments and a copy of some recent blood work. And then he was gone, and we were on our own. The whirlwind continued as I went to relieve myself painfully while Kathryn scheduled the BCG sessions for the next three Thursdays. Kathryn asked if I wanted a steak dinner to celebrate. Instead we decided to stick hard with the anti-cancer diet and picked up some fresh yellowtail from the best fish market in town and headed home.

The good news took a while to settle in. We both gave silent thanks to God as we drove home. I called my parents and pastor and emailed my boss. All were thrilled beyond belief. I put out an update email when we got home. And I felt like I was walking on air - fifty pounds lighter on my feet. Urination was very painful, so we have an update of everyone's favorite picture on the right side of this post. About two hours later I crashed - hard. Physically, emotionally, intellectually, everything. I could hardly move or think all afternoon. I could not even sleep. It's not that I wasn't happy and thankful - just completely and totally exhausted in every way. Dinner and an excellent bottle of Pinot Noir were good, but perhaps wasted on me. At 10 we went to bed, and I was still too tired to sleep. I flipped channels on the TV and finally hit the hay at 1:30 AM, sleeping fitfully. The next day I woke up with a headache, scratchy throat, and head/upper respiratory congestion. Apparently my collapse was so complete that I contracted a head cold of some sort - the first in years!

Today, Friday, I feel pretty awful - as if I had been beaten physically, but still very happy. I will spend the weekend preparing the bathroom and paraphernalia to cope with BCG treatments become Biohazard Man again, for three more weeks. I figure this cold will be gone after a day or two of bedrest and heavy fluids, easier now as the "affected area" is improving gradually. A few of you have an idea that the diet was effective and have asked us for specifics. It will take some time to get the details put together and correct, so you should start by ramping WAY down on stuff listed in THIS POST. And ramp up on all fresh fruits and vegetables, especially broccoli, garlic, grapes, curry, and green tea. The idea and the science behind the diet are that you stop eating the bad, fertilizer, steroid, pesticide, and chlorine laden foods that press all the cancer buttons, and start eating the things that tend to push the cancer-fighting buttons. I have not yet discovered one book that concisely sums it up, so it will take a while to get organized posts from the three we used to get you all something useful.

Another thing to keep in mind is that I am doing many things to fight the cancer: diet, vitamins, Oncovite, MCP, and lots of prayer. Who can say if it's one or more or some combination that's working so far? And soon I will be adding the hated exercise to the mix. I will try to explain the scientific rationale behind each of these in upcoming posts and book reviews. So stay tuned for more excitement here on the blog!

Judgment Day Approaches - October 21, 2008

It's been a while since I've posted a blog entry. I owe you all two or three book reviews, and maybe some other clever and entertaining reading and pictures. For the next few days it will have to wait. I sent out an email message this evening to family and friends. Many of them don't read the blog (though some check it multiple times daily!), and I do an occasional email to keep them in the loop. I thought it would be appropriate to share this one with the rest of the world:

Hello,

I have not sent out one of these e-mail updates since August 9th. At that time I told you that no news would be good news, and that has been the case. Fall season is fully upon Utah - trees are actively dropping leaves, and day/night temperatures are getting colder. The air is crisp, clean, and clear. It's a beautiful time of year.

In the past months I traveled to Indianapolis to visit good friends and get a second medical opinion, which was informative if not particularly helpful or encouraging. I did a phone consultation with another doctor in Phoenix, and that experience was much more upbeat and positive. Kathryn and I implemented radical dietary changes two months ago. We are eating well and the pounds are melting away, though that is a side effect - the main purpose of the dietary change is to stop encouraging the cancer and start discouraging it.

We traveled to Acapulco with another couple for a week of fun in the sun, and then to Portland (OR) for a weekend of good food, wine, and chocolate with another set of friends. We celebrated our 25th anniversary on October 8th. All of this fun mixed with a good dose of work made it easy to keep the attitude positive and upbeat.

This week, on Thursday (at about 11AM MDT), my doctor will visually inspect my bladder with a cystoscope. I describe the process as "sending in a film crew," because that's what it will feel like. At that time he will either see nothing, and I will continue with three more bio treatments. Or he will see something, and I will likely go to surgery #3 to verify what it is. The docs say the odds are 50/50. I like to think they are better than that, because the docs discount both diet and prayer - and we've done a little of the former and a lot of the latter.

I want the doc to see a very healthy bladder and nothing else. I am hoping and praying that God wants the same. I'm absolutely convinced that He has my best interests in mind no matter what the outcome. Intellectually that's working out OK. Emotions have not been as cooperative.

For those of you that pray and are praying, I really appreciate it. I encourage you to continue to pray for a clean report on Thursday.

For those of you that don't pray, today would be a phenomenal time to start. If not today or tomorrow, than Thursday at the latest!

I will send another email on Thursday to let you all know what transpired.

Thanks for all your support,
Steve Kelley

We'll see what we shall see. Stay tuned...

Reconciling Second Opinions - October 11, 2008

Hello all. It's been a week of anniversaries. Still in a mellow frame of mind from vacation travel, we celebrated our 25th wedding anniversary on Wednesday and I was honored by my employer for my 15th anniversary with them on Friday. Through it all we stayed on the new diet with a couple of minor exceptions. We did have one small dessert in Portland, again on Wednesday, and a chocolate on Friday. Pretty easy to stay on the strict diet otherwise.

On Thursday I had an appointment with Dr. Hopkins to discuss the two medical second opinions I had obtained from Dr. X and from Dr. Lamm. After a moderate wait the doctor came in, and I was pleased to see that he had the second opinion writeups that I had faxed to the office a month ago in my file, and that he had read them. There were two areas of apparent disconnect between him and the second opinions. We plunged into a discussion of the first topic, the difference between maintenance protocols that Dr. Hopkins favored versus Dr. Lamm's recommendations (seconded by Dr. X). The primary difference is that Dr. Hopkins favors full-dose BCG treatments for a reducing frequency for three years. Dr. Lamm favors a reduced dosage of BCG (one third in my case) at an increased frequency for 12 years. So we can see the difference is big. We agreed that Dr. Lamm is indeed the guru, and that in the case of the treatment recommended he is somewhat going with his gut feel from experience. Dr. Hopkins explained that all docs do this to some extent, and he acknowledged that Lamm had the experience edge. He also pointed out that few, if any, documented cases existed of BCG maintenance for 12 years - a logical outfall of the fact that maintenance therapy was only pioneered 10 years ago, and not widely adopted until about 2 years ago. I suggested we focus on the first two years of the regimen, because if I avoid recurrence in that period I will have beaten the percentages. He explained that he likes to keep the full dose for two reasons - 1) his patients seem to be able to tolerate it OK (my main concern), and 2) it's easier. I laughed and commented that the first argument was reasonable, and the second was not compelling at all. Dr Hopkins agreed, and said he was willing to follow Lamm's protocol. He acknowledged that there's no evidence of increased risk of recurrence from a lower dose, and it should help with toleration.

At this point I told him that I rather not have them act like architects, each with his own design, equally good, that I the customer can choose from based on my preferences. I suggested that perhaps they could function more like engineers and collaborate to come up with a joint recommendation for my case. Dr. Hopkins admitted that such an approach was possible. I went on to elaborate that they might learn from each other and both groups of patients might benefit, and the doc did well not to roll his eyes at my naivete. So apparently there are still some egos involved, mine included! I said that I would be happy to compensate both doctors for this function. Dr. Hopkins said it should not be necessary, and he took Dr. Lamm's email address and said he'd send a note. If Lamm required a consulting fee, he said we could work that out later.

On the second area of discrepancy, I was under the impression that if Dr. Hopkins saw ANYTHING suspicious during the upcoming cystoscopy, the next step is radical surgery ASAP. Dr. X seemed to support this approach, while Dr. Lamm indicated there was a middle ground. And Dr. X said there is much to be ascertained from cystoscopy while Dr. Lamm says a further resection is ALWAYS required. Dr. Hopkins explained that he could indeed have a firm idea what type of growth I have from observation via cystoscope, but that he would always do another TURBT to verify without question in a lab with a microscope. And he further agreed that there might be some cases (like observing apparent CIS) where they could do an office biopsy for the lab sample. And based on the lab results, the majority of cases would indicate radical surgery, though some could be handled by further BCG treatments, or rarely other therapies. The best option, of course, is that he would see nothing of concern and continue BCG maintenance. I had never discussed this part of the treatment in detail with him, and it was good to have the apparent discrepancies resolved.

That said, I would be reluctant to have a third TURBT within 9 months. It's a lot of general anesthesia for a body to handle, and the probability of a good outcome (no radical surgery) would be pretty low. I guess I will deal with those feelings later, if the situation arises. As for radical surgery, there are a lot of options to research and questions to ask. I will try to avoid thinking about any of it until necessary. That may not be so easy, especially when lying awake at night. In the meantime the Judgment Day cystoscopy is still scheduled for a dozen days from now on October 23. Another guy in Toronto (HK) just finished his 6th BCG treatment and will be having HIS follow-up cystoscopy the next day on October 24. It's probably not too soon to send out prayers, good thoughts, and positive waves for both of us now!

Oregon Vacation - October 6, 2008

Had a great 4 day weekend in Portland, Oregon and surrounding areas. This area is a mecca for organic food, outstanding Pinot Noir (known as Burgundy in France), and creative gourmet chocolate. We indulged in all three, in moderation, with our good friends Darrell and Makenzie from Seattle. I was also able to track down a friend who has morphed from Manhattan finance maven to boutique winemaker. His stuff is both excellent and expensive. If you are ever in Willamette wine country, be sure to check out Jay MacDonald and his EIEIO winery and visit The Tasting Room near Carlton, Oregon. We also had some great meals in Portland, very good at El Gaucho and outstanding at Higgins. Check the links for my restaurant reviews! And while I'm not a big coffee drinker, the handcrafted masterpieces at the very downscale Stumptown Coffee Roasters were stunning, delicious, and amazing.

In other news, Kathryn and I will be celebrating our 25th wedding anniversary at a nice place in Salt Lake on Wednesday evening with two other couples - IF she decides to keep me for two more days!