Second Opinion Mini-Update - August 30, 2008

Hi folks, I'm having a great time in Indianapolis visiting some friends from college. Lots of fun activities with pictures to upload. My second opinion appointment went as well as could be expected. Not much new news, not much good news, not much bad news. He confirmed many things I suspected. He does have a very different viewpoint and approach from Dr. Hopkins. So I have a lot of information solidified. Emotionally I have very mixed feelings right now, so I will wait a couple of days for all that to sort out before I give you all a final report of the findings in a posting here.

Thanks to Sandy V. for the very encouraging email she sent today!!!

Stay tuned!

Preparing for BCG Treatments - Info YOU Need! - August 21, 2008

A fellow from Canada sent me a private email and told he he was going to start BCG on August 26, next Tuesday. He asked me what to expect, how the procedure was done, and if it would hurt. It occurred to me that all of these things are addressed on the blog in a few places. I saw that he had spent quite a bit of time on the blog and had looked at many pages. I wondered why he could not find the information. So I went out and looked for it myself. It turns out that the answers to these simple questions (and probably many others) are not easy to find unless you are interested in reading my story from beginning to end. While I find myself fascinating, it's probably not so helpful to those doing quick Google searches, or those who just want the bottom line.

Here is my answer to him, and now I hope that future internet searchers for this topic will find this post where all the BCG process, expectations, and my experience are consolidated.

The BCG instillation procedure should not be painful. The key is to relax. Relaxing is quite difficult the first time a stranger puts a tube up inside your bladder. The key is to take slow deep breaths through your mouth and do not hold your breath, which is the natural reaction! Holding the BCG in the bladder should not be difficult - they only put in 50 ml, and you don't feel much - maybe a small burning. If you drink enough fluids, getting through the 8 hours afterwards is easier. Most people do not have side effects on the 1st BCG. I was told not to drink any fluids at all for at least four hours before BCG. After putting BCG in, hold for 2 hours. Then for next six hours, use bleach in toilet. I avoided all fluids for 10 hours before, except brushing my teeth. I had a lot of things prepared in advance to make it easier. Preparations (which may be a little on the overkill side) are described HERE.

THIS POST describes in detail what I did to deal with handling requirements for the first few BCG treatments:

For instillation a catheter will be inserted - takes about 20-30 seconds. Then 30 seconds to put in the BCG solution. 10 seconds to remove tube - they will not leave it in like a Foley. Having the tube put in is for my first six treatments is described at the top of this page - do keep in mind that they use a smaller tube with no balloon for BCG instillations, and they don't leave the tube in - thank goodness!

My six initial BCG inputs are described, and my particular side effects listed in great detail at the bottom of the page here.
What most folks experience might be slightly worse than my symptoms, and that's described HERE.

A much more unpleasant set of side effects happened to a man in England. There is no way to predict how any one person will react to BCG. Does not matter what your age is, your gender, your cancer grade or stage, or where you live. The more serious side effects that can occur are described here. Hopefully yours will be more like mine than his. In my opinion he did not drink enough fluids.

My fluid regimen is to drink 16 ounces (half a liter) slowly over the first hour (immediately after BCG), 16 more ounces the next half hour, and then 32 ounces (1 liter) the next half hour immediately before voiding the BCG. This has made getting the BCG out after 2 hours much easier, and hasn't created any "holding problems." Then I continue with 32 ounces or more per hour for the next six hours, then cut to half of that for the balance of the evening. This schedule keeps me going most of the night at least hourly, but the volume has purged the BCG, blood, and clots very well. Keep in mind that the instructions say no fluids for 4 hours before. I drink a little regular water, but major hydration is done with water, room temperature iced tea, and spicy lemonade. If you need flavoring in the water, use organic lemon, lime, or orange juice. If you need sweetener with that or the iced tea, use stevia, a natural leaf extract. AVOID sugar and high fructose corn syrup, which cause glucose spikes in the bloodstream - glucose is cancer's favorite food. And avoid artificial sweeteners, which MAY stimulate cancer triggers in your system - even though not proven, why take a chance? And everyone tells you not to drink tea to hydrate because it is a diuretic (makes you pee). I'm no expert, but what could be better in this absurd situation? Perhaps one thing - if you are not taking any medications that preclude it, beer and wine are also acceptable!

Best advice for prospective BCG recipients: RELAX, DEEP SLOW BREATHING, DRINK MUCH FLUID FOR FULL 8 HOURS!

Best of success to you.

UPDATE: As of October, 2011, I have completed exactly half of my BCG maintenance treatments.  Please refer to my BCG lessons learned HERE.

Enough About Me - Who Are YOU People? - August 15, 2008

Running a blog and spilling my guts out on the internet has been a great venting tool for me. Besides catharsis, it's also become an easy way to keep family, friends, and colleagues up to date on the situation - though there are still many who don't or won't read the blog. In fact only about 30% of the people on my list of folks to keep updated read this blog on a regular basis. Not complaining - just surprised. And now it seems to be coming into its own as a tool to help to others out there in cyberspace. This domain (blogspot.com) is fully owned by Google, so my blog is integrated with the Google search engine. It's taken a while, but now if you Google "bladder cancer" with a few other words that appear here frequently, you will get a link near the top of the list for this site! And if you click on that link, it's my hope that you find something useful, interesting, or entertaining here. I have had quite a few strangers hitting the blog of late from Google searches. One fellow from Canada typed in "male bladder cancer treatment of bcg" last night and spent over half an hour on the blog, looking at over 30 different pages. He sent me a follow-up question, too. More on that in a later post. Another person typed in "bcg bladder treatments 6 weeks pain" and spent no time at all on the site, which seems odd because I have a lot of stuff on that topic. Another one Googled "my story with t1 bladder cancer" just like I have, but that person didn't stay long either. Whatever! I must say my favorite Google hit so far was yesterday evening from a guy in Michigan who searched on "turbt drinking beer." That WOULD be a guy, right? Anyhow beer is a perfectly fine way to hydrate and take the edge off (within reason) if you are not taking any drugs that would be affected. I'd recommend American lite beer, which is nearly pure water anyway! He spent 23 minutes on the site and looked at 16 pages, so I hope he reached the right conclusion!

How do I know so much about all of you? First of all, I don't know a lot about any individual, but I can see what you Googled, how long you stayed, how many page views, and where your Internet provider is based - which may not at all be where YOU are located. For instance my friend TK lives in Albuquerque, but her ISP is based in Denver. So the internet is not revealing any detailed personal or useful information about you all. But you do make an interesting collection of readers. You can see who is looking into the blog also. Just hit the Sitemeter button located near the bottom of the left-hand column, then hit the "By Details" link under RECENT VISITORS section of the left column, then click on any line number displayed (not the ISP name) to get details for any visitor and snoop away! I shall continue to post here, and friends, info-seekers, and other voyeurs are welcome to read all about it. Welcome all!

Medical Second Opinions - August 15, 2008

Hello all. It's really good to be back in the swing of things. Mentally I feel absolutely great. Workwise it's been a pretty busy week. Physically I'm up to nearly "normal" feeling. One problem is that I have been pretty much a part time employee of late, with all the medical stuff and recovery. Did a lot of working from home, too. You can see from my keyboard at right that the office needed some attention (just kidding). I worked a very busy and full week, ending with teaching a class all morning on Friday. Working does require some mental "heavy lifting," and teaching a class of precocious engineers and support personnel is physically exhausting. The class seemed to go well, and that's a good thing indeed! I was pretty aggressive getting back in the saddle this week, but pushing myself a bit is probably not a bad thing at all. A bit tired after it all. And there is lots more stuff to do in my backlog. There is no question that the person with the biggest load is my boss, and I am eager to do more to take a piece of that off her plate. I should probably get one of the signs at left for her office, though!

Today's topic is Medical Second Opinions. Everybody told me that you have to get one, and I am now getting around to it - in fact, I'm getting two! So why should everyone get a second opinion? It's not so much that you expect the other doctor to say, "Cancer? You don't have anything like that. It was all a big mistake. Never mind!" While that would be welcome news, it's not realistic. What you want the second opinion to do is validate the diagnostic procedures used, the conclusions reached, and the treatment recommended. The best outcome is that the second opinion is exactly like the first one. Grading and staging cancers is a bit of an art, though, so you might find out that another doctor thinks your case may be better or worse than the first doctor. No issue if the treatment plan would be the same, but a big issue if deciding whether to do radical surgery or not! Also the doctors have different experiences and may recommend additional tests and/or treatments for you to consider. Independence is desirable, but not mandatory. In my case one of the second opinion doctors knows Dr. Hopkins very well, so perhaps they might even collaborate some on my case. Then you have the leverage of two experts working on your behalf. And if they have different recommendations for the path ahead, you have a decision to make. So it pays to use the resources at hand. Most insurances pay for it, so why not get it done?

How to proceed? This is not so obvious. Your current doctor can recommend someone, or for more independence you can get a list of the board-certified urologists in your area pretty easily from the American Medical Association at THIS LINK. It's a difficult process to become board certified, so this means the doctors are both qualified and motivated to undergo the process. Other docs not board-certified are usually OK, too. I checked out several in Salt Lake City that might have been fine, but I chose to look for more of a "superstar" doc for second opinion. Dr. Chuck helped me find one, and we hope the effort proves fruitful. I will have to incur some travel expenses to go out of state, but it's a small price to pay. If you are wondering why I have not disclosed the name of the new doctor, it's because I want to make sure the experience is generally positive first. Then I will name him, recommend him, and publish his contact info. If you want to stay near home, going to a separate medical center in your area might be good. I looked into the Hunstman Center in Salt Lake City, and they were very prompt and helpful in responding to my email, as you can see below...

Thank you for contacting the Huntsman Cancer Institute. I am sorry to hear about your bladder cancer and I hope this information will be helpful to you. Please share this information with your physician as I am not a doctor and cannot recommend any medical advice. Obtaining a second opinion is a wise course of action with any cancer diagnosis. It provides you with a different perspective of your disease and will provide you with an additional option for treatment or confirm the opinion of the first physician. Although I cannot recommend one specific urologist, I can give you contact information for our urologic oncology department that specializes in your type of cancer. Their website is http://www.hci.utah.edu/group/urologic/program.jsp and you can contact their patient coordinator, Dustin Banks at 801-587-4381. You may also want to search for local board certified urologists at https://doctorfinder.ama-assn.org/doctorfinder/home.jsp?

Finally, I have attached a brochure that can be helpful in communicating with your doctor to make sure you have covered all of your bases. "What Questions Should I Ask My Doctor Now That I Have Been Diagnosed with Cancer?" (Huntsman Cancer Institute) http://www.hopeguide.org/hope/ResourceDetailCMD.jac?searchString=&score=0&resourceID=3429&referer=/faq.jsp I hope that this information is helpful. Please visit our Cancer Learning Center website (www.huntsmancancer.org/clc) where you can search for books, videos, DVDs, CDs, and CD-ROMs available for check out. For more cancer resources and information online, visit the HOPE Guide (Huntsman Online Patient Education) website at www.hopeguide.org. If you need more information, or if you can’t link to any of these websites, please let us know. We are happy to answer any further questions and to send you these documents in the mail. I wish you all the best.

I am preparing a list of questions for the new docs to answer during our consultations. Here's what I have so far. Your inputs and suggestions are also welcome.

Questions for Second Opinions
1) Validate bladder cancer grading (G3) and staging (T1)
2) Validate diagnosis and treatment recommendations
3) What particular risks were added due to bladder perforation during TURBT #1?
Any additional diagnostics or treatments indicated?
4) Opinion on adjunct therapies (complementary not substitutes)
Vitamins – Oncovite, fish oils,etc. (currently taking)
Modified Citrus Pectin – chelating agent (currently taking)
Hyperthermia
Hyperbaric
Others recommended or to avoid?
5) Specific Dietary recommendations?
6) If no cancer observed October 23, 2008 cytoscopy, recommended treatment
Additional diagnostics to cystoscopy recommended and when?
Additional treatments to BCG therapy recommended and when?
7) If cancer observed October 23, 2008 cytoscopy, recommended treatment
If radical cystectomy indicated, include prostate or other tissues/glands/organs?
Associated risks of not doing prostate, etc.?
If radical surgery indicated, how long can it be postponed & what are associated risks?
8) If BCG therapies continue, how long before TURBT could be indicated vice radical surgery?

It's great to live in a country where there are so many resources eager to provide help and information. I encourage you to take advantage of them and get a second opinion - or two!

BCG #6 Full Report - August 8, 2008

Happy Crazy 8's Day! (8/8/08) I feel much better than yesterday by contrast, though pretty tired and sore in the bladder region. Side effects have cleared up, so once the soreness improves I should be on track to "normal" again. Instillation was a piece of (sugar-free) cake. Dr. Hopkins looked at the log of the first five treatments and said it was consistent with his expectations - increasing symptoms week by week. He said to expect a bit worse for this round, and he was right about that! I also told him that I had chosen a doc in another state for second opinion via a roundabout way (Dr. Chuck), and that it was probably someone he knew. He was instantly curious, and it turns out the doc in question was a year behind Hopkins during urology internship and residency at Indiana University. Dr. Hopkins had high praise for his colleague, describing him as "brilliant, dedicated, and hard-working." Just the sort you would want for an opinion. Then he added, "Tell him that I taught him everything he knows!" jokingly, and gave me a note to pass on. We all hope that the BCG will do the trick, but Dr. Hopkins affirmed that there's no point in scheduling the next rounds of BCG until after the cytoscopic inspection on October 23 - Judgment Day. He asked if we had any questions and left us on our own.

I will be setting up a transmittal of records and scheduling an appointment with the brilliant doctor next week. Dr. Chuck also advised me to go ahead and do an "e-Consultation" with Dr. Lamm in Arizona - good for a potentially different point of view and a bargain at $300. I believe my insurance will cover the consult from the other doctor, but not the travel expenses or the Lamm consult. In the big picture it's a small price to pay. I will ask both of the docs to confirm the diagnosis, grading, and staging, review the treatment plan, and discuss alternatives for what should happen after the cystoscopy whether new growth cancer is observed or not. More on this topic will be discussed in a later post.

Even though the waiting room was empty, Dr. Hopkins was busy and running late. BCG was not instilled until 11:15AM (from our 10:30 appointment). Endless summer construction had shut down half of the northbound Interstate, and it took about 80 minutes to get home. Did my normal hydration routine, and side effects hit about an hour after I voided the initial BCG, earlier than ever in the past. They got worse quicker and lasted longer, too. I increased hydration to try to fully flush the system and ended up going 3-4 times per hour. This approach did the trick, but put more stress on the bladder and associated systems. By 5 PM I had a mild headache, a full blown stomach ache, abdominal cramps, bladder pain, no appetite, etc. No one of these symptoms amounted to much, but having them all for most of the day was pretty miserable. My entire day is well-summarized by the T-shirt at the left. (And no, I don't want one!) Visible side effects were mostly gone by 10 PM, and I was up every hour or so through the night draining out the remaining liquid. All the details are now updated at the bottom of the Installation Page (2/10 on the gross out scale). I was drinking a lot of iced tea (at room temperature, sweetened with stevia); water flavored with organic lemon/lime/orange juice and sweetened with stevia; and spicy lemonade* for variety. But apparently there's a soft drink made and distributed in the African country of Ghana that might have been more appropriate - see photo at right...

Friday has been much better. Got up early and started slow hydration. Been "going" a bit today (not nearly at yesterday's rate), and each time there's a tiny bit less soreness and discomfort. I'm hoping that the recovery will be as early as tonight or tomorrow, and it looks good so far. Thinking is much clearer today, though less than 100%, and so doing some light work and this blog have become possible again. Will probably start the new dietary regimen and resume the MCP this weekend or early next week. My mood and attitude are dramatically improved, for which everyone is thankful.

*To make 1 gallon of SPICY LEMONADE combine:
Juice of 5-6 large organic lemons (20-24 oz)
1.25 cups (20 oz) organic Grade B Maple Syrup (you can use Grade A, but it's expensive!)
While maple syrup is less severe than table sugar or high fructose corn syrup, it's still sugar, and it still yields blood glucose - cancer's favorite food. I suggest using only stevia (a natural leaf extract) as sweetener. Since concentrations vary, you will need to experiment to find the correct amount!
1 teaspoon of organic Cayenne Pepper
10 cups (80 oz) of purified or spring water(non-chlorinated water)
The resulting drink looks like tea, due to the Grade B syrup.
Can be served cold, cool, room temp, or hot.

If you just want to try it, one serving is:
2 tablespoons fresh organic lemon juice
2 tablespoons organic Grade B Maple Syrup
Sweeten to taste with stevia (a natural leaf extract found in health food stores)
1/8 teaspoon (or more) organic Cayenne Pepper
8 ounces of purified or spring water(non-chlorinated water)Can be served cold, cool, room temp, or hot.

BCG #6 Mini-Report - Rough Day - August 7, 2008

Hi folks! Today was a pretty rough day - the worst so far. BCG was not started until 11:15, traffic jam coming home, symptoms started earlier, were more dramatic, and ran longer - still going now at 8:30 PM (pun intended). I had to increase hydration level at 40-60 ounces per hour during the bulk of the afternoon, and I am now good and truly exhausted. Upset stomach, sore abdomen, and foul mood. The tiredness and fuzziness of thought processes is much worse than it has been in the past. I forwarded the wrong emails to the wrong people, made silly typos, etc. Most major urinary symptoms now gone, but I need to do the complete story for you tomorrow or later when I can think straight. For instance, it took about 30 minutes to put this little post together. The Instillation Page (2/10 on gross out scale) updated for the instillation, but the side effects (bottom of the page) won't be updated until tomorrow. Thank God this is the last one for a while...

Eve of the Final BCG Treatment, General Cancer Info, and Looking Forward - August 6, 2008

My BCG experience has so far been pretty mild. Certainly not on the level of ADR in England. And now he's sunning himself on a beach in the Azores today without a care in the world. So life does go on. What to expect for the last one? A quick instillation from Dr. Hopkins, followed by a pretty rough day of hydration and voiding. It's not so much the physical pain or burning, but it's rough because you cannot sit for more than 15 minutes, or lie down for more than 30 - the last 5 of which are occupied with fidgeting and clock watching. And you have to sit to pee and do all the special biohazard handling, which can be tricky when you are in a hurry! Last time the side effects started 4 hours after instillation and lasted nearly 4 hours, the longest to date. But with the hydration regimen there's no extra physical discomfort, because there is plenty of fluid to clear everything out each time. There is a chance that tomorrow could last even longer, which means I shall have to keep up the 32 ounces per hour input/output pace perhaps even past 7 PM. Still, it's only one day of running to pee every 20-30 minutes, then hourly through most of the night. I wonder if all that counts as exercise? My bladder sure feels like it! Details of the instillation and subsequent voiding and side effects will be posted on the Installation Page sometime tomorrow evening.

If all goes well Saturday begins my three months of freedom. I will probably try to ride the bike somewhere and work a 5-day week next week for the first time in a long time. I wonder if I can get used to that again! We have our air tickets to travel to Acapulco for a week in September with another couple, celebrating our 25th anniversary two weeks in advance. I should also work in a couple of three or four day weekends for some motorcycle trips - doesn't matter where, as long as the weather is good! And I may have some business trips in there as well. Then Judgment Day on October 23. A clear reading there will improve all subsequent odds, so all your prayers and well-wishes should focus on that date!

In other news my good friend Dr. Chuck researched two lists of potential doctors from which to get my second opinion. While urology and oncology are not his fields, he's been around enough to know the difference between valuable experience and attributes of a doctor from less good, or even questionable. He selected two clear winners from the pack. I am working to set up consultations with both - one via mail (my records) and telephone, and the other via mail (records) and probably a personal visit out of state. I will fill you in on exactly who and why they were chosen in a future post - if the details work out OK.

Another teaser for later - my company, in addition to the excellent benefits that pay for most of this including my time off, has hooked me up with a Personal Health Coach. Her name is Crystal, and she is a Registered Nurse based in Maryland. She calls every week or two in a pre-arranged appointment for half an hour. Since the doctors are prescribing medical advice and treatments, she steers clear of those areas except to say, "Do what the doctors tell you!" Instead she is focusing on dietary habits and practices. Since Kathryn is in charge of the kitchen, we use a speakerphone and take the call at home in the evenings, so we can both participate. Crystal has suggested some radical changes to our diet, and most of it is pretty easy to implement. We have also learned that there are some basic cancer facts that I was unaware of - Cancer loves sugar (and starch that turns into sugar); Cancer hates oxygen; Cancer likes an acidic body environment and does poorly in alkaline body chemistry; chlorinated water can kill healthy bacteria which then cannot fight Cancer. Immediately for us that means using bottled spring water (until we get a house treatment system, which we may or may not do), eliminating all sugar and most starch, limiting meats and increasing fruits and vegetables proportionally. There are some other more radical changes that we are going to try over the next month, and I will share them with you when we decide they are helping - or not. I was really clueless about the sugar. I was using Oreos to cushion my stomach for drugs post-surgery, for goodness sake! What a bad idea that was!!! But it's not difficult at all now to say, "No thanks!" to the cake and donuts and candy that's always floating around the workplace. I love sugar as much as the next guy, but I have no desire to feed the cancer cells! And living at altitude means less oxygen, which is bad, but that can be improved by the deep breathing exercises. That's something I should be using for more than reducing stress on instillation days. So there are many things to occupy future blog postings even during my upcoming 3 months off of active cancer treatments. Stay tuned!