Twlight at the Oasis

Okay, it's been a few weeks since a blog update. I made three trips to Loma Linda in May, but now I'm here for the duration of my treatment (unless I am fortunate enough to be able to sneak away for a job interview). My Proton Beam radiation starts this week and is scheduled to end the first week in July.

I find Loma Linda to be an amazing oasis. Having lived in Montana for 18 years and having only made a couple very brief trips to Southern California, Loma Linda is practically an exotic foreign country to me. (I realize this works in both directions - right now someone from Rancho Cucamonga just returned from a vacation to Galcier Park and is blogging about how Montana is a beautiful oasis...practically another country.)

It's not just the climate, terrain and flora and fauna differences that make Loma Linda unique - lots of So Cal looks like this. It's also the enormous presence of the Medical Center and the Seventh Day Adventist influence that make Loma Linda unlike anywhere else - that make it the perfect place for a "radiation vacation."

I love walking around the town. It's not very big...maybe 20,000 people and 8-12 square miles. Loma Linda is about an hour east of Los Angeles...buffered from San Bernadino by I-10 and the railroad tracks and protected to the south by a ridgeline. With my blood still "Montana thick" I prefer to take my long walks in the morning or at dusk. It's a total feast for the senses. Sure, there's the ubiquitous Palm trees and the well-represented orange trees - and roses seem to grow like weeds without any thought or planning. But there's soooo much more. Most of the trees and flowers are new to me so I can't list them here. I did make a point of asking a lady I met one evening to tell me the name of the large trees with the purple blossoms. They're Jacaranda trees (picture above) and they are pretty much in bloom here in May. They're beautiful and can be seen for miles from a good vantage point. I cannot tell you just how good it smells walking around the neighborhoods. Just watch out for the skunks in the evening. I've crossed paths with more skunks here in May than I've directly met in my previous 45 years.

I'm renting half of a little cottage on the west end of town. I can walk to just about everything I need. The Medical Center is a 12-minute walk from my cottage and the amazing Drayson Center athletic complex is a 15 minute walk away. My cottage is sweet...really tiny, but everything I need. It's furnished and has DirecTV, high-speed internet, a full kitchen and it is air conditioned. It's quiet for the most part...the dog next door gets fired up every now and then...and the helicopters come and go at all hours as LLMC is the Level 1 trauma center for all San Bernadino County. I actually find the helicopters comforting as I imagine a good outcome when they arrive at their destination.

No one ever comes to Loma Linda for a steak and a beer. This town probably has the highest per capita percentage of vegetarians in the country. There's two grocery stores and a small market. The largest grocery store (a chain) does have red meat, wine and beer but the other two do not. The cafeterias at the hospital are 100% vegetarian. This is due to the Seventh Day Adventist presence in town. It's an awful stereotype to say that Seventh Day Adventist are similar to Mormons (probably about as fair as saying Koreans are "like" Chinese) but I don't have the space to get into deep detail. Adventist are conservative, follow a healthy diet (even more so than LDS), and like Mormons even have a 19th-century prophet (Ellen White is to Adventists as Joseph Smith is to Mormons). The motto of the Adventist is "to make man whole", and that is really seen in the Loma Linda Medical Center. I cannot think of a better place to be treated and to stay during treatment. If you want a more detailed description of the Seventh Day Adventist religion, you can always Google it. Radiation patients also get a free pass to the Drayson center (below)...it's an amazing fitness facility, and I'll go there most every day, even if it's only just to swim.

My treatment starts in a couple days. I'm not nervous, anxious maybe, but not nervous. I'm hoping that I'll sail through with no side effects, though some fatigue is almost certain. I feel great...I spent some time this weekend with people who had not seen me in several months. A couple thought that my cancer was working on me...I laughed and told them that I just finally got serious about eating healthy and quickly dropped a lot of weight. Truthfully I feel better than I have in years...now if I can just find a job. I'll update that quest soon, but tomorrow I think I'm going to the Joshua Tree...and the next day to the Getty Museum in LA. The job can wait, the radiation vacation will continue. For now.

Beta Omicron Beta (or Dave joins a fraternity 28 years late)

I never joined a fraternity in college. I sort of found them to be silly and a time-waster. In reality, the best fraternities probably would not have taken me. Plus, I had the same girlfriend all through college, (I do not recommend this) thereby eliminating one of the biggest selling points of joining a frat. Finally I was concerned that during the pledge process objects could possibly be placed in my rectum. So I skipped the entire Greek experience. (Pun intended)

So it is with a touch of irony that I join my first fraternal group at age 45. A group of 4,000 men that has one thing in common. In fact the name of the group is even based on the fact that we all have had the same object inserted in our rectums. Yes, isn't it ironic? Welcome to the "Brotherhood of the Balloon" - my first fraternity. We 4,000 actually have several things in common...once again starting at the rear and working my way forward - we all have had urologist's fingers and biopsy needles up there as well. But of the hundreds of thousands of men with Prostate Cancer what really makes us 4,000 unique is the balloon and the fact that it means we all have chosen Proton Beam Radiation as our treatment.

So, what of this balloon you speak? This comes from the website (members have access to the super-secret parts) ...

The only criteria for membership in the BOB is having been diagnosed with prostate cancer and choosing Proton treatment. One need not have completed proton therapy to join. During treatment, the Proton Beam is focused on the prostate gland plus a 12 millimeter (half-inch) margin around the gland. Treating this extra margin helps to kill any cancer that may have escaped the gland . This margin of safety may include part of the rectum, which is adjacent to the prostate. In order to protect the posterior (outside) wall of the rectum from radiation, a small, lubricated balloon is inserted into the rectum and inflated with water prior to each treatment. A secondary function of the balloon is to help immobilize the prostate, by pushing it up against the pelvic bone..So, our fraternity has the infamous “balloon” as the common denominator for all members.

Maybe I should be a bit more respectful about the group I just joined. But humor really helps deal with the frustrations and stresses of Prostate cancer, so I default there often. Probably the best thing that helps deal with the frustration and stress of a PCa diagnosis are the many websites out there. They are true communities where one can find information, support, guidance and friendship. You are joining these communities along with newly diagnosed people (just like you)...and when you arrive you can usually find many others who have "been there and done that" and are willing to share their stories and offer advice. Oh sure, like anything else on the internet there's some misinformation out there....there's know-it-alls and bullies and the occasional troll or person with an agenda. However the percentage of these is much, much smaller than your typical websites where one might join to discuss sports, politics or current events. I believe that members go out of their way to be respectful of the plights and views of all at most of these prostate cancer sites.

I assume that most doctors must hate these sites. They create instant medical "know-it-alls" who challenge the advice of doctors who went to school for years and have practiced in the real world for many more years. And some of us are better at using the internet for research than others. The internet is a dangerous weapon in the hands of some people.

But let's turn this around...I'll bet there are more than a few well-grounded doctors (who do not have agenda's of their own) who appreciate not having to start from the very basics with their informed patients. (What was the Vince Lombardi quote??? "Gentlemen, THIS is a football.") When you consider just how limited the actual doctor-patient face time can be I think much more gets accomplished when an informed patient is asking the doctor a series of questions about his diagnosis/treatment rather than that precious time being spent just getting the patient up to speed on the basics. In my case I did exhaustive research online and then I actually spoke to 4 people that had prostate surgery and to 5 people that had completed Proton Beam Radiation. I only knew one of these gentlemen prior to our conversations.

These website communities are invaluable and I lurked and learned and eventually participated at most of them as I journeyed from high PSA toward biopsy to diagnosis to treatment....and I'm sure I'll continue to participate and advise those who follow.

Some recommendations:

http://www.yananow.net/

www.healingwell.com/community/default.aspx?f=35

http://www.protonbob.com/

The first site is probably the best. It has great background information for anyone concerned about prostate cancer and while it does not have a true message board it has an amazing database of personal experiences that goes back years and can be searched by age, PSA, Gleason score or treatment choice.

The second site has an active and helpful message board. It tends to be surgery-heavy, but that's the route most men take....and, it's the treatment with the most variables so you'll see many discussions of the potential consequences of surgery.

The last site is focused on Proton Beam Radiation and is therefore biased towards that treatment...but hey, they're my fraternity brothers.

Defending Your Life

And now....the title track from our new album... I mean, blog.

Today I had my consultation for Proton Beam Radiation at Loma Linda Medical Center. I had pretty much already made up my mind that this is the path I was going to take for treatment. I also needed to decide if I would participate in a clinical trial currently going on at LLMC. The premise is that equivalent results (without any negative change in side effects) can be achieved by delivering a higher daily radiation dose over fewer days. Trial participants will receive 3 Gy of radiation daily for a total of 60 Gy. The current protocol at Loma Linda is 1.8 Gy daily for 45 days. (One gray is equal to an absorbed dose of 1 Joule/kilogram (one gray equals 100 rads)

First I should back up and explain a bit more about Proton Beam Radiation. Compared with conventional X-ray radiation, the Proton radiation focuses much more of its energy on the tumor and much less on surrounding tissue that may be just in front of or behind the prostate. Proton Beam Radiation offers results equivalent to surgery and conventional radiation with fewer side effects. (That previous sentence is a simplification of a mountain of data and real life experiences that is still hotly debated...but I believe it to be true...especially for early-stage modestly aggressive cancers such as mine.) So why don't more people choose this treatment? Several reasons: It's expensive - it's currently only offered at 6 places in the country - and, as stated earlier, the treatment (including preliminary work) requires about 10 weeks. Had I not lost my job I probably would not been able to get the time off necessary for my treatment choice...so, there's one silver lining there for me. (Maybe two silver linings as my insurance that I'm "Cobra-ing" is awesome) Finally many people diagnosed with prostate cancer simply follow the recommendation of their urologist. That recommendation is almost always surgery for all but the most aggressive cancers. Urologists are surgeons.

Back to the clinical trial....why would I agree to be a Guinea Pig? My doctor here at Loma Linda is certainly one of the most respected doctors in his field. He was able to answer my questions on side effects and on the effectiveness of the overall lower dose. You see, the alpha-beta ratio of Prostate cancer is lower than other cancers...making prostate cancer especially sensitive to fractionated changes in radiation doses. (Isn't it funny when somebody repeats something they learned just 11 hours ago as if they have known it for decades?) So, I'm assured that 60 Gy delivered over 20 sessions is equivalent to 81 Gy. I also have personal reasons for favoring the trial. The 4-5 weeks I'll be saving in treatment will save me money renting temporary housing here in California. It will also allow me to ramp up my job search sooner. It's bad enough that right now I'm telling prospective employers I'm not available for two more months. The trial will hopefully allow me to select my preferred treatment and allow me to start earning a paycheck sooner.

So that's the plan to defend my life...a bit hyperbolic of a title - my life's not in danger. Maybe "Taking Care of Business" is more appropriate. At any rate, I have a plan. If it works, two months from now I'll be strong, healthy, cancer-free, tanned, rested, ready and employed.