Doug's Battle for Health


Life's too good to leave it unfinished!


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May 2007
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Gotta Tri

"Live as if you were to die tomorrow,
learn as if you were to live forever."

Mahatma Gandhi
"We look forward to the time when the power of love will replace the love of power. Then will our world know the blessings of peace."
William Gladstone

Wednesday, May 30th

Sweetness


Well the Blog has been dominated lately with my bad news so I thought it was time to do a health post. As George Bernard Shaw wrote, “Caring for the world is what remains after caring for yourself.” I am feeling pretty good both physically and emotionally as I move forward. Amazing how thankful I am to be healthy enough to stay active and productive everyday. It’s a beautiful spring and these are certainly cherished days for me. Speaking of sweet...

The US has been steadily increasing its consumption of refined sugar and each person is now averaging 165 pounds a year. Cancer cells crave and live on sugar so I continue to make a huge effort to cut it out of my diet. That means someone out there is eating more than his or her share. And the health ramifications are serious with paralleled increases in obesity and diabetes. Eating simple sugars cause blood sugar levels to spike and then come down hard. And substitutes like honey, maple syrup and cane syrup contain high levels of the same substance as refined sugar. Complex sugars like those found in fruit break down and enter the bloodstream at a slower rate.

While I was in the clinic in Mexico, the kitchen used Agave Nectar as a sweetener. This is very sweet syrup derived from the tequila cactus (Ah, its many uses!). We have it in our cupboard. Other natural substitutes are not as sweet but are still a better choice than sugar. Amazake from fermented sweet rice, brown rice syrup and fig sugar are all rich in flavor, vitamins and minerals. However, the best choice may be Stevia which is many times sweeter than sugar, doesn’t effect blood sugar and contains no calories.

It wasn’t long ago that I saw two graphs set over the top of each other and looking very related. One was the average size of a fast food soda over the years (Remember when they were 8 ounces?) and the other was the growth rate of childhood obesity. High Fructose Corn Syrup is the bane of our civilized society. Federal corn supplements make it abundant and prevalent in pretty much every sweet tasting drink on the market. Check your labels.

Doug on 05.30.07 @ 05:59 PM PST [link]

Tuesday, May 29th

Moving Forward - But Not Taking Off


So Friday, Jeanette and I went and sat down with a Neurosurgeon to look over my MRI and to discuss options for treatment for my spine. After looking over the films, he feels that surgery is necessary. My pain will continue unless I receive temporary steroid injections in the spine or stay on the oral steroids (neither are possible for extended periods). At this point the bone itself looks completely taken over by the tumor. This means that it would most likely need to be replaced through a surgery.

The operation was explained to be about a 6-hour process where they would go in through both the front and back of the neck to take out the bone and replace it with a fake. They may take bone from my hip to contribute to this area. Recovery would be the tough part and probably lay me up for several weeks.

My Oncologist and others are concerned at this point that the bone is pretty week and could fracture easily. This could cause me to become paralyzed and move the surgery to an emergency situation. Needless to say, she is adamant about me traveling overseas. So the trip to Germany and Austria is off for tomorrow. Today is a search for a good Neurosurgeon who can move forward with process.

Also this morning I had the pleasure of talking with British Airways once again to figure out what I can do with my ticket. Since it is non-refundable the only way I am not out the $1,600 is if I pay another $200 to make a change and pick another travel date between now and next year. So it looks like I will be traveling back to Germany again some time. However, this will have to wait until Fall or Winter as the Dendritic Cell treatments do not seem to be successful and this Summer looks to be a busy one.

Doug on 05.29.07 @ 10:19 AM PST [link]

Friday, May 25th

Who is on Steroids?


Now I am not so sure about Floyd Landis and what he might have been taking during the Tour de France but I know I would be disqualified.

To reduce the swelling around the nerves coming out of my spinal column and thus to reduce the pain, my doctor put me on the steroid, Decadron (Dexamethasone). It sure did work, as I haven’t had to touch the bottle of morphine pills that she also subscribed. Unfortunately, steroids come with a few other side effects as you have probably heard. There is supposed to be a weight gain though I have managed to lose 5 lbs this week. Increased blood pressure is also a possibility but mine is 120/70 as of this morning. And the other main one is shortness of breath and allergic reactions. Since my lungs are in trouble, the shortness of breath seems to come with the package.

I can vouch for the supposed lesser side effects.
Insomnia – Try dealing a cancer diagnosis and negative prognosis when you can’t sleep. Lots of nights laying in bed thinking.
Upset Stomach – They usually prescribe an H-2 Inhibitor with this because the stomach gets in trouble.
The Jitters – This one is my interpretation. My body feels like I am living on a constant speed dose. And that has never been my drug of choice as I just get way too over wound.

So now I start to taper my dose back. Every warning says not to stop steroids abruptly as your body’s thyroid has shut down from producing now for “flight or fight” response. I am also warned that stopping it will bring the pain back to my arms. So I will try to find a happy medium here and cancel my plans for this year’s Olympic Trials.

Doug on 05.25.07 @ 02:37 PM PST [link]

Wednesday, May 23rd

Possible Spinal Surgery


Today I met with a Dr. Rembert, a Radio Oncologist with the Alta Bates Group. He was consulting me on whether I would be a candidate for another round of radiation to my vertebrate in my neck. After reviewing my current films, he feels that it may be a little too risky to the spinal column since it had only been 10 months since my last round of radiation.

He was concerned with the structural integrity of the bone and felt I needed to consult with a Neurosurgeon as soon as possible. The illustration tries to show the area of the bone that is invaded by the tumor and how it has softened the area. There appears to be bone shards pressing into the spinal column region that could put me in danger of paralysis.

So I have an appointment on Friday to get a quick consult and possibly move forward with spinal surgery to strengthen the area. There are several options on how that might be done and I will know more after Friday. Tonight I received a call from my Oncologist who feels I should postpone this last trip to Germany because an accident could put me in need of emergency surgery in a foreign country.

Doug on 05.23.07 @ 07:53 PM PST [link]

Monday, May 21st

Holding on to a Flame of Hope in a Rain Storm


I have had my days when the doom weighs very heavy. I know that I will die of this cancer at some point. How soon, is a question that torments me on a regular basis. Do I hold every minute as precious for there are so few? Or can I let a few slip away as they used to, as just passing time in my busy day? Can I figure a way to use the time to be a better father, husband or friend so that my eventual memory will carry more meaning and strength?

I don’t know how to answer these questions. I seem to prefer to fill my days as before with tasks of busy work, play and responsibility. A sort of denial that it may all be gone soon. This seems to work for me until my hidden flame of hope gets a dousing of reality. Maybe a pain that hits me like never before, lost strength and endurance that will hardly let me climb stairs, or scan results that show tumor growth.

Its like living two different lives. One that is a face of normalcy that people can see as I drive down the street or talk to them at a party. This is the one I hide behind to convince myself that this cannot be happening to me. Then there is the other life that comes to me at all hours of the night or when my doctor tells me that treatment is not working. That is a depression that is hard to explain and one I cannot sit with for long. But it haunts me deeply and regularly.

So I take on little projects that require months to complete. Certainly I can’t leave those unfinished. The deck is still not done and I think it has been three years now. I just built a guitar that I worked on for months and am considering my next one. Plans are being finished for a house remodel. And I am working on a novelette that needs much more attention if is to be completed.

In the end, it is all about Jeanette and the kids. I know they need me dearly and as hard as everyone tries to convince me otherwise, I can’t help but feel a deep sense of guilt for leaving my life with them unfinished. There will be future hardships because I am gone and that stabs at my core. So I hang on to my little flame and I fight to be here as long as possible.

Doug on 05.21.07 @ 10:30 PM PST [link]

Thursday, May 17th

Crippling Pain


I have been avoiding talking about my condition as I think there are other things worth sharing. However, this is a blog about my battle for health so I should take some time to tell you where I am.

According to the doctors in Germany, if the Dendritic Cell treatment is going to be successful, I should be seeing some results about now. I am always positive and hopeful, but when I woke up yesterday to more pain than I have ever felt before, doubt crept in. By last night, I couldn’t sleep even after steady doses of Oxycodone pain pills. At 3am I drew myself a hot bath to find some relief. At 5:30, I finally just got up for good. At 8am this morning after two Ibuprofen 800s and a Vicodin, I was one of the first to call and insist on an emergency appointment.

Armed with my beloved hot water bottle and my beloved wife, I met with my oncologist to figure out why my whole left side was in crippling pain. She discussed the chest x-ray I had earlier last week and bluntly stated that my lung tumors are growing. She then ordered a neck x-ray to rule out any serious damage. She also gave me a new series of pain pill prescriptions and an MRI order for later this night.

The image above is one of the many produced by the MRI machine. This is a thin slice of my neck from the base of my skull to about the 11th vertebrate. You can see that the 7th one from the top is darkened by the tumor and the spinal column is squeezed. As the tumor grows and/or the tissue becomes inflamed, I feel more pain. Eventually, I may require surgery to fuse the vertebrae and support the neck.

Today was certainly a blow to my positive attitude and hope but I will rise with a reaffirmation to continue the good fight.

Doug on 05.17.07 @ 08:40 PM PST [link]

Tuesday, May 15th

FRU$TRATED


All in all, I am a pretty patient man. I can handle a delay that costs me a day or so. I can handle last minute cancellations of doctor appointments that I waited 2 months for. I can even quietly clean up a full bottle of shampoo that my daughter has spread all over the floor. But when it comes to mistakes that cost me money, I have little tolerance. In booking the flights, cars, trains and hotel rooms for my many travels these past six months, I do my best to keep expenses down. Yes, I feel guilty that my chosen alternative treatments cost my family so much money. So I do what I can, looking for discounts here and there.

Usually I use Travelocity. On my last trip, I needed a hotel room near the Frankfurt airport because I had a 7:30am flight. I spent time looking at various options and settled on an “Airport Hotel” in the city. Upon arrival I realized this hotel was not near the airport and they didn’t have a shuttle. I handed my Travelocity printout to the taxi driver and he took me to #4 Nordendstrasse, Frankfurt, about 15 miles away. The address had a Tai Restaurant on the ground floor, which is not uncommon. But going to the person on duty, I learned that there was no hotel here at all. Calling another taxi and explaining the problem, I learned that Travelocity had the city wrong and I should be at #4 Nordendstrasse in Waldorf! So a $60 cab ride got me to my hotel that was still far from the airport and had no shuttle for my early flight. All this to save about $30 on the hotel.

Today, I had to make a change in my upcoming flight itinerary. Unfortunately, the Hospital in Cologne, Germany recently informed me that June 8th was a national holiday and they would be closed. My schedule had me receiving injections on that day and flying home the 9th. The cost of flights have doubled since this winter’s travel so I booked the cheapest flight I could find which was with British Airways. I recently informed Travelocity of my need to change my ticket. They said that since they issued a paper ticket (there only option) I needed to send it back to them. But we are too close to the departure date for them to make the change and send the new ones back. So I must go out to the ticket counter at SFO. Checking with British Airways, I learned that not only would there be substantial change-fees but I would have to make up the difference in ticket costs as well.

So you are thinking, “Trip insurance would have been smart.” Smart I am, as I had purchased the $35 flight insurance! Heck, in my condition, who knows what might happen between now and then. So I called the insurance company and the impressive lady on the other end was able to rattle off the few things that qualify me to be reimbursed for the charges. Seems I would either have to come down with Stage IV Cancer after I bought the ticket, had my house burn down, got in a car accident on the way to the airport, or lost a spouse or child. It took me a moment but in the end I figured paying the fees would be easiest. So I made the drive to San Francisco International Airport today and stood at the counter while she spent an hour figuring out how to manage my changes.

Is it a little ironic that the new $600 charge on my credit card counts towards airline miles?

Doug on 05.15.07 @ 03:53 PM PST [link]

Monday, May 14th

The Scene Of The Crime


No offense to my three buddies who traveled with me a few months ago, but when it comes to seeing Europe, there is no better traveling partner than your own spouse. Yes, this time Jeanette will be making the trip with me. This will be my 6th trip in six months and I will not need to return to Cologne until December.

For this excursion Jeanette and I will be jetting over to Vienna, Austria. What we like to call, “The Scene of the Crime.” I depart on May 30th and she heads out on the 31st. After my blood draw in Cologne, I will catch up with her in the capital city of the Hapsburg empire. While I taught and ran the computer program at the American International School, we lived in the city for several years. In April 1993, just before moving home, we decided to get married there. As you can imagine, this trip will be a big stroll down memory lane and a chance for the two of us to spend about six days together on a second honeymoon.

So leaving the kids at home, we are once again looking for volunteers who may want to spend some time in our house with our kids. This will be from May 31st to June 9th. I anticipate coordinating a large tag team so if you are interested, please call us at (925) 362-4884 or email me at gottatri@gmail.com.

Doug on 05.14.07 @ 08:30 AM PST [link]

Thursday, May 10th

Really Personal


The Audi TT is so fun to drive and gets such a great reaction from people that I thought I would work on ideas for a personalized license plate. Since this option has been available to people for years, there are not a lot of clever ones still left. So since this is a German car and Jeanette and I have had occasion to speak German, I thought I would explore some German words.

The German word for drive or ride is, "fahrt." So that opened all kinds of possibilities as you can imagine. The one above is my favorite and actually is available (Can you believe it?). In an excited exclamation this morning, I shared the idea with Jeanette.

Seems we won’t be getting this plate for the car. There is a general consensus that not enough of the local population speaks German and may misinterpret. So the search continues…

Doug on 05.10.07 @ 03:45 PM PST [link]

Wednesday, May 9th

Upwardly Mobile


I have had the fortune to travel a bit in my life. Since I lived in Austria for 3 years traveling extensively and have been bouncing to Germany these past six months, I have been on quite a few flights. But I have never upgraded to business or first class, until this recent trip. In the past, I have always squeezed into Economy with the rest of the crowd, grateful for a few peanuts and a glass of juice. I am usually not interested in the movie, but for nothing else to do, I crane my head around the person in front to try and make out the video on a bad screen many aisles away.

Through a series of fortunate events, this last trip home from London to San Francisco (10 hours) I was able to fly business class. It soon became obvious to me why they call it “class.” When I got my ticket, instead of telling me a gate he told me which lounge to report to. Sometimes I had seen those double glass doors hidden away and never knew what lay behind. As I walked in, I was greeted by a nice receptionist who checked my ticket and told me she would let me know when the plane was ready. Inside was a plush lounge with leather chairs, beautiful tables, office setups, Web stations, magazine racks, food and drink. As I sat there enjoying all of these amenities, I kept thinking any minute someone would tell me I was in the wrong place.

An announcement came for my plane with instructions of where to go. As I arrived at the gate, I walked with my other classmates passed the crowd that was starting to cue up and those trying to sleep in the small uncomfortable chairs. We had a separate entrance and went right in. I arrived at my seat and fell in love. Here was a full recliner with personal entertainment center. As I sat and played with the various controls I was greeted with a tray of drinks. I set it on the little spot on my armrest and continued to explore. The pocket in front had a goodie bag with eye mask, earplugs, toothbrush and toothpaste, etc. And there was a flat panel screen that came up from my armrest and allowed me to watch up to three of the six movies that ran continuously.

Once in flight, I reclined the seat (which went all the way down) and raised the leg rest. I then noticed that the pillow and blanket were also upgraded. As I drifted off to sleep, I thought about the folks where I usually sit.

Doug on 05.09.07 @ 03:10 PM PST [link]

Monday, May 7th

A Healthy Skepticism


I probably should get off my theme that pharmaceutical companies carry so much money and power that they can successfully “push” their drugs regardless of public safety. But in an effort to keep you all aware and healthy, I won’t give it up. As you have noticed, there has been an exponential increase in spending on advertisement campaigns for prescription drugs, “Ask you doctor.” So when these same TV stations getting huge advertising dollars run reports on drugs, will they find faults?

Hormone Replacement Therapy (HRT) has been sold to women going through menopause for many years. Approved by the FDA and encouraged by doctors, it was billed as a way to stay youthful and even prevent against heart attacks and strokes. As if the body had it wrong with this natural aging process. A few years ago, the National Institute of Health set up a multi-center study known as the Women’s Health Initiative. This was to document the many assumed benefits of HRT. The study was interrupted because results were starting to show alarming numbers of side effects. Instead of benefiting, women taking these drugs had a 29 percent increase in heart attacks, a 22 percent increase in cardiovascular disease, and a 26 percent increase in breast cancer risk!

To add insult to injury (and I think to further expose the FDA-drug company cycle) they announced this week that HRT markedly increases the risk of uterine and ovarian cancer. Statistical drops in the number of cases for women parallels the numbers that have stopped or not used HRT drugs.

When I tell people that I am refusing chemotherapy, I often get reactions that are similar to what I felt just a few years ago. “How could that person choose to not avail themselves to all means possible?” From experience and research, I know what those drugs will do to me. I also know that as many cancer patients die in the end from side effects of chemo as from the cancer itself. So I have a healthy skepticism of any highly touted wonder drug. I think it was Nancy Reagan that said, “Just say no to drugs.”

Doug on 05.07.07 @ 08:52 AM PST [link]

Thursday, May 3rd

Pondering Longevity


Every time I take a solo trip, I get a little too reflective on my life. I start to understand that death is inevitable. It is part of every animal’s life, yet we usually don’t like to delve too deeply into our own demise. Reflecting on our past or planning for the future is a much more pleasant activity. Usually the past can be sugarcoated and the future looks great.

When you think about life, you figure we all come in with at least a good 75 to 80 years ahead of us. It would be nice to go longer as long as I am strong and healthy. But it is a bit of a card game. Have you ever played the game “War” with two people and a single deck of cards? You figure you should get dealt a couple of aces, kings, queens, etc. And the first time through the deck you learn what hand you have been dealt. Always a let down when it is short. So, the game goes on and you loose some of the prized cards and start to realize you may not be long for this game.

Europe seems appropriate for my trips as the history there makes even a good lifespan feel pretty insignificant. You can stumble into civilizations, art and structures that date back several thousand years. Of course, I try not to think about the amazing accomplishments of short life spans like Mozart, Van Gogh, and other masters who never made 40. I started to wonder if Europeans have a different perspective on longevity and personal history because of where they are. US advanced civilization only goes back a few hundred years (I want to sensitive to American Indians here). We are only talking about a few generations really.

Well, I have no answers. The deeper I ponder, the more questions I come up with.

Doug on 05.03.07 @ 01:30 AM PST [link]

Tuesday, May 1st

Ode to My Hot Water Bottle


She’s quite simple really, been around for years
Filled with hot water, she can dry the toughest of tears

Oh, the relief she brings helps to lessen my disease
Each night before bed she gets a refill and a big squeeze

No need for electricity, battery, or power
Seems I can enjoy her warmth anyplace, any hour

She’ll travel rolled in a purse or flat in a case
I can take her cross-town or just about any place

On a couch, chair, bed or the car
She eases my pain both near and a far

What better gift for someone with an ache or a pain
For so little a cost yet such great a gain

She could help everyone who feels that twist of a knife
Heck, once a month mine’s used by my wife

Go now and get one you really shouldn’t dawdle
I guess you can tell I love my Hot Water Bottle

Doug on 05.01.07 @ 03:21 AM PST [link]



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