Treatment Update #2

Friends,

Let me start by saying my update is nothing more, an opportunity to fill you in on what's been happening with my cancer battle these last few months - it isn't a prelude to a miraculous recovery (at least not yet) or an ominous cloud of what is to come. It's simply a glimpse into the roller coaster ride of a cancer battle from hallucinations to American Idol to MRI's.

I'm not sure where I last left off since, so I apologize if this is slightly repetitive for some. There are few moments where I can look back over the last year and really pinpoint a pivotal moment. Going in to see a gastroenterologist to get my liver check one last time before graduate school was one. Deciding to follow up on a recommendation from a friend to look into Seattle Cancer Care Alliance was another.

Seattle Cancer Care Alliance is associated with the University of Washington Medical University and Fred Hutchinson Cancer Research Center to focus on one thing, the treatment and cure of cancer. The type of care I've received at this facility is second to none. I raved about the Mayo Clinic awhile back. I still feel the Mayo is a top notch facility, but it is a hospital. They treat people but they still process thousands of people on a daily basis, so despite their best attempts the experience can feel somewhat cattle car-ish as you get shuffled through their massive facility. The SCCA is a facility that goes above the Mayo, to me. They have made both an art and a science of treating cancer. Instead of a disease, you are a person. Instead of a survival span, you are a life that matters. Needless to say I've been nothing but impressed.

Practically, I have transferred my care to Dr. Sam Whiting at Seattle Cancer Care Alliance and am no longer seeing Dr. Robinson. She was in no way a bad physician, she just wasn't a specialist when it came to my type of disease and the back office was a mess at her practice. I feel like I've now gone from a court appointed attorney to Robert Shapiro. If you're curious about getting a glimpse into Dr. Whiting, check this out: http://www.seattlecca.org/physician-detail.cfm?PhysicianID=81&Story=1. He specializes in gastroentestinal cancers and is also a top notch researcher working with the Fred Hutchinson Institute. The corporate mumbo jumbo on Sam's page about "treating the humanistic and personal side of medicine" is nothing but lipservice. After being his patient, this is why Dr. Whiting became a doctor. Our visits are just that, visits. We discuss Alex Rodriguez, Lance Armstrong or twinkies, it doesn't matter. We have formed a bond that they teach you against in medical school. You can tell he looks forward to his appointments and that he wants people to be as active in the treatment and treatment plan as he is. And he is as knowledgeable and current in his field as they come. He probably thinks of himself as a healer, not just a physician.

Speaking of healers, I have also begun to see a naturopathic doctor. His name is Dr. Donovan. He has practiced naturopathic medicine for over 15 years and before that was a oncology RN, so he specializes in cancer patients with his treatments. One of the problems I experienced with my first chemotherapy pill, Nexavar, was the fact I had diarrhea a couple times a day. The body is simple in that it needs more calories coming in than going out (exercise, lifestyle, BM's), so I struggled to maintain my weight and dropped to as light as 128lbs. I am 5'10", so I had become an even more pronounced walking bean pole. We determined the chemo pill was preventing the cells in my gut from shedding (did you know your gut sheds more layers of cells than your skin) so I have having problems absorbing my food. Imagine, all that work and pleasure of eating without the benefit. Some of you are probably cursing my name right now and saying that's a problem you wish you had......yeah, well try constant diarrhea for a while and see if you're signing the same tune.

Back to Dr. Whiting at the SCCA. When I was transferring my care to him (and these emails stopped), I had an updated CT scan. The scan showed the Nexavar was working great on the primary liver tumor but wasn't stopping the growth of the lung tumors. Since this disease has spread, it is much harder to treat because you are tackling cancer in multiple different "environments" within the body, and cancer usually changes its cell structure each time it metastesisizes or spreads so one medicine may not work equally well in all places. With the goal of complete stabilization, we deemed Nexavar just wasn't working well enough. Coincidentally, Dr. Whiting was just beginning a clinical trial through the Fred Hutchinson Cancer Research Center. They were looking to treat primary liver cancer tumors with a combination of oral chemotherapies that were used to successfully treat other gastroentestinal cancers. The pills they are using in the clinical trial are in and of themselves approved by the FDA, but not for the treatment of liver cancer and have not been formally used in combination to test the effectiveness of them. Which leads me to this past week, where I started the clinical trial.

The clinical trial is a combination of Xeloda, a fast dividing cell killer, and Sutent, a drug that operates in similar fashion to Nexavar but has some different properties. These drugs are slightly more potent in combination than the Nexavar so I was given a battery of "support" pills for those just in case things like nausea and diarrhea. Not only did I have these support pills to contend with, the actual trial is a mess to keep track of. You have to take 4 of one pill in the morning, then 3 of the same pill at night with 2 additional pills at night on top of the 3. Confused yet? I was constantly downing pills. And we're not talking little pinpoints either - these were the monster horse pills. About the third day into the trial, I wasn't feeling so hot. I had an appointment for some blood work and just as I'm walking through the parking lot to my car after my appointment, I get my first of about 5 bouts with vomiting. Standing between a couple cars in an underground garage, retching more than vomiting. Lovely. This was significant because it began my exploration into the world of anti-nausea medication. I had been given 5 different ones to stop (zofran, compazine, reglan, lorazapan, and benadryl). Over the next 4 days I would have more nausea and would use a wide variety of these different meds to try to stop it. On top of this, I started having cognitive degeneration.

The next 4 days have become fodder for the Rarick Family Saturday Night Live, with Rhone as the main roast. The things I did and then had recounted back to me are unexplainable. Which only goes to show how screwed up I was becoming. Most of the pills say they can make you feel a little sleepy. Sleepy I can handle. But I was slowly starting to become restless, hallucinate, do complex, irrational math computations in my head, have trouble with short term memory, and have some slight physical changes. Now that I list them all out, I can't believe I let it go on as long as I did. But I was convinced this was for my betterment and was determined to overcome some short term pain for long term gain. Here's an example of what transpired. I would be passed out in bed one minute, spring up the next second, pace around my room then in a standing position, and finally drive my head into my mattress saying that I was "burying my head in the sand". I took 3 showers a day to pass the time. I was convinced that my sleep one night was directly proportional to the number of votes that were being received on American Idol (I had just semi-watch the show in a haze), and that if I didn't continue to sleep the intake of votes would be all thrown off. Mind you, I was completely serious and totally believed the junk I was sellin'. I asked my dad to go with my for a walk around the block when it was sunny. During the walk, I kept my arms stiff like Frankenstein, left my mouth hanging open, and just kind of shuffled at a snails pace. Plus, I was obsessed with how fast I was going. Every few minutes I'd ask my dad what time it was so I could calculate the velocity (even though I was probably way off and doing what equated to kindergarten work, I was convinced at the time that I was doing complex math in my head). These are only a few examples of my shenanegans, if we're ever together I'll share the rest with you over a meal. Only one word does it justice, weird.

After multiple days of this, my family and Michelle (thankfully) got worried and called the doctor to explain the situation. I had gone from pretty normal other than cancer to a raving loony. So there I was at 7pm, talking to my doctor on the phone (he was still at the office), answering questions about my health and cognitive function. The net of our conversation was that I needed to come in the next day for a brain MRI (WTF?!) just to make sure nothing was wrong with that area. Imagine being restless, wanting to crawl our of your own skin, shoved into what can only be compared to a time capsule, and being told to sit completely still for the next half hour. Oh by the way, to keep your mind occupied, we'll gladly play you some Jack Johnson. Gee, thanks. Anyway, the result of this whole fiasco was that I was one of 6 people total, out the hundreds of thousands who have been documented taking this drug, who experienced a side effect where the chemotherapy attacked the myelin (coating over the nerves in my brain) causing cognitive impairment. Pretty serious if not taken care of. All the cases where this has happened, the patients have returned to normal within days of stopping the medication, and I already feel 98% better after having stopped a little more then a day ago.

So the long and short of it, I'm no longer on that clinical trial. There was a successful clinical trial that recently ended at MD Anderson down in Houston, showing very promising results. So my doctor and I are going to start the meds from that trial and take it from there....one day at a time.

Sorry for the length, thanks for sticking with me. I promise to do these on a more regular basis. Let me know if you would no longer like to receive these mails, no hard feelings.

Rhone