2017 BCG Post-Mortem - June 21, 2017

I completed a series of 3 BCG Maintenance treatments in early May, and I have dawdled a bit on posting the results.  This behavior, as well as my very infrequent posting on the blog, are symptomatic of a very good thing.  Cancer is no longer a major factor in my day to day life. It's a nuisance, a pain, and a distraction. Somewhat like having to go in to the dentist for a root canal every once and a while. Nobody likes it, but it has to be done, and then you are back living life again, having mostly forgotten about it after a day or two. So how was it this time? Fricking awful, as usual, but temporary.  

If I could go back and do all the BCGs again (not that I want to), I would do a lot of things differently.  I started out with the philosophy that hydration was the only remedy, and the worse it was, the more hydration was needed.  Was drinking almost a gallon per hour and making things worse by flushing out electrolytes and getting extra side effects from that.  I also suspended almost everything a few days before treatments - all supplements, vitamins, alcohol, whatever.  A lot of times I blew off the deep breathing exercises, making the catheter insertions more painful and recovery from it taking longer. Probably a few other things as well.  I also focused my data gathering and reporting on urinary symptoms, which can be spectacular and colorful, but are not really meaningful to the experience.  I was describing what the urine looked like, but very little about how it felt each time, or how I was feeling in general. I even grabbed onto the term "malaise" to describe my general blah feeling, body aches, mental dullness, and physical exhaustion - most of which was caused by over-hydration.  

This time I tried to focus more on the general feel of things, including minor inconveniences for a few days after, which I had formerly dismissed in order to pretend to be mentally tough.  Maybe good for the ego, but not all that helpful for the audience.  I also did not discontinue any supplements or other lifestyle until the day of the treatments, except for the 3rd one - when I took a beta glucans supplement early in the morning before the treatment.  If you were wondering if beta glucans are worth the expense, or whether they do anything, I suggest you compare treatment 2 and 3.  Normally #3 would be worse, and it was much milder in this case. Here are the symptom charts from this series: 



With a 3 year gap since the last time, the first treatment was no big deal.  Just an inconvenience. The second treatment pretty much mirrored 2014, as did my protocol - no supplements, medium hydration including Gatorade, etc.  I have had much worse times with BCG in the past, but after feeling so good for so long, this second treatment was pretty tough on me mentally.  For the third treatment I took a chance and did my normal, empty-stomach, early morning beta glucans supplement. The difference was quite astounding.  Even so, I am not eager to do it again, even though the original protocol suggested by Dr. Lamm would indicate one final series of 3 maintenance treatments in 2020.


Dr. Hopkins has mentioned several times that he is unsure of the benefit of continued BCG maintenance, but he has gone along with the Lamm recommendation from the beginning.  We did skip one series by broadening the timespan from 1 year to 2 years early, and ended up skipping another by broadening the 2 years to 3 years starting last time.  We may end up blowing off the series in 2020. If you ask me now, a month later, I'd say 2020 is not going to happen. Not so much because of the nuisance, nor that I think BCG is not effective.  But more so the other supplements, lifestyle, and diet changes I have made have improved my health to the point that I think what I do now is more powerful than another BCG series would be.  So why spend another 3 days in discomfort, running to squat on the toilet and doing the biohazard thing?  I may feel differently then, if insurance is still paying, and I am in a "cowboy up" mood.  Time will tell.

In the meantime a lot of you have come and asked me something to the effect of: "Exactly WHAT is it that you are doing now?"  I suppose digging through the blog posts to find what I did and then translate in things that I changed my mind on is a big pain. So I plan to make another post later on that summarizes my current protocol and provides the rationale for each.  I need to ponder it for a bit and then get in the mood, so no promises of when, but hopefully later this summer.




Judgment Day 2017: CANCER FREE for 9 Years Now! - April 17, 2017

Due to some complex travel plans, we are about 3 weeks earlier than last year for Judgment Day. The setting is the same, Spring in Utah, and the day is nice, if not as bright as last year - to be expected for April rather than May. Last year I did not even think about the cysto at all, not even the day it happened, working on business finances for month-end closing until about an hour before the procedure. That was a big mistake. Relaxation was not achieved, and the recovery period was much longer than it should have been. This year would be different!

This year I avoided doing anything financial (despite being the day before Tax Day) and kept the business work superficial. And I deliberately spent time starting 4 hours prior to the scope doing relaxation, deep breathing, meditation and prayer. Time well invested!

The 25 minute drive to the office was uneventful, and the check-in was routine. The waiting room was packed, and even though we were shown to the exam room quickly, it was a while. Dr. Hopkins breezed in at 2:50 for my 2:00 appointment.  Not much had changed, except Dr. Hopkins has a few more grey hairs, I have a few less hairs of any color, and I had shed about 50 pounds. The Doc was looking svelte as well.  Lidocaine and scope, assisted by deep breathing exercises, was fast and painless.  Outcome was as hoped for - ALL CLEAR.  Wine and fancy snacks to celebrate.  BCGs to begin in 15 days or so, details to follow!