The last couple of weeks had been a real roller-coaster. My seizures had been becoming more frequent, following the pattern of the period before my last MRI which showed regrowth. At that time I had been given a different treatment, and again for a couple of weeks I was seizure-free. But they had returned, even sooner than in the last cycle, and were now happening every few days. Meanwhile, I was getting my blood tested every week and my platelets were dropping to the point where my scheduled chemo might be postponed.
I had already started thinking about what I might do if the current treatment failed. Through my alternative practitioner and others, I had been collecting information about alternative treatments, including dendritic cell vaccine, where a vaccine is derived from the patient’s own tumor cells. (Unfortunately, only live tissue is used, and we missed an opportunity when I was operated on in September…they’d have to go in again.) I made an appointment with Dr. Len Saputo in Walnut Creek, CA who combines traditional and alternative practices. My hope was that if I needed to seek alternative treatment, Len could guide me towards what would make the most sense. Thus, I had provided myself with a "Plan B." (Coincidentally, I’ve known Len for years through the Flash Family improv theater company, and have performed with him a number of times.)
Washed Out in Anaheim
Meanwhile, weekend before last, we had planned to drive to Disneyland to see Tyler’s middle school steel pan band perform. Ellen and I were not there in any official capacity, as they had a crew of adult chaperones, and Miles came along…we just decided it would be fun to drive down to watch the performance. We were staying in LA only two nights, so it was basically a drive-down, drive-back sort of trip. Unfortunately, the day of Tyler’s performance, Anaheim got more than four inches of rain, the most they’d ever had in a 24-hour period. This might not have been a serious obstacle under normal circumstances, but the funky logistics, combined with Disney’s notoriously prickly policies on just about everything, made it a fiasco.
The first problem was that the performers had to wear a special "uniform" authorized by DisneyCo, during the performance only…the kids were required to change back into their regular clothes before they were allowed back into the park, which was part of the deal. The second problem was that the dressing room was a good half-mile from the area where they were performing, and this distance needed to be travelled on foot in the pouring rain. Making this even more unpleasant was the fact that a bottleneck in a tunnel required our group to stand, soaking, for at least five minutes and wait while a marching band came back through the one-person-wide passageway. An additional problem was that DisneyCo didn’t want to be responsible for the kid’s "regular" clothes and personal items, for which they had been given a brown paper shopping bag. Therefore, the kids had to stash their bags in the rental truck that housed the steel pans, stands, and 55-gallon oil drums. This caused more problems, in that the bags were in the way of the steel pans, and there was no place besides the far-away dressing room for the kids to change after the performance. Nonetheless, we were able to get the truck to a relatively convenient spot, requiring only a couple hundred feet of moving the drums. We’d been assigned a tour guide with a walkie-talkie, who reassured us despite our concerns that we would have plenty of time to set up. "We’ve had bigger steel pan bands than yours here. No problem." So when the time came, we got the hardware to the performing area as quickly as we could, which, thankfully, was covered. Everything got soaked, so we tried to dry the drums off with whatever we could find, namely paper napkins. Armed with two big handfuls, I wiped as many of the drums as I could, despite the fact that my soaked baseball cap was depositing a kitchen-faucet-like stream of water on them.
After about half the time we were told we would have to set up, the kids gave their performance to a crowd that barely outnumbered them. To their credit, they played pretty well…mixing traditional calypso tunes with things like Kool and the Gang’s "Celebration" and "Satisfaction" from the Stones. Then the real fun began. Chris began hollering "Everything has to be off this stage! NOW!" making it impossible for us to break down in an organized manner all the stands, cases, etc. that the group had brought down. Having roadied for this particular group in the past, I knew exactly how much of a problem it was to have an area adjacent to the truck packed with drums, pans and stands dumped willy-nilly on top of each other. One of the chaperones sent all the kids back through the rain to the dressing room, without realizing that the kids should have taken their personal bags with them.
At this point our truck was at best an hour and a half from being packed up, full of clothes that need to be changed into by kids a half mile away. Several of us took it upon ourselves to organize a delivery of the bags to the dressing room on foot, carrying as many as we could at a time. The first trips resulted in wet and torn bags, so we quickly employed plastic garbage bags. I could get four or five kid bags into a plastic bag, so Miles and I dragged the bags through the gates, under the tunnels, across the parking lot in the rain, making several trips to get them all back to the dressing area. Unfortunately, a short time later, I had a seizure in the boys’ dressing room. Although I can often make them subside on their own, I carry medicine that I can dissolve in my mouth if needed. But I made a bad choice to put it in my left pocket, since my left side is affected and I needed help getting the medicine into my mouth.
By this time, the kids were pretty much all changed and park passes were being handed out. Ellen and I were eligible for full-day passes as well, but we chose to blow off Disneyland completely (I hadn’t planned on going on the rides anyway) and go back to the hotel for a hot shower, a nap and a nice dinner out. Ellen found a wonderful place where we had a fabulous meal and stayed dry. I hoped the kids were having a good time, as the rain hadn’t stopped all day.
We retired around 10:30 but were awakened when 24 middle-schoolers simultaneously arrived at the hotel, including our kids, who reported that they had had fun but were soaked. All over the hotel complex I could hear the sound of showers being turned on as everyone sought relief.
There’s not much to describe about the trip home on Interstate 5, as anyone who has ever driven it can testify. I did, however, have a seizure in the car around 10:30. We stopped at Harris Ranch for lunch (an odd place for a non-carnivore) and I had another seizure there. It wasn’t a big deal…I doubt that anyone in the restaurant was even aware of it…but two in one day was more than I had ever had. Despite being worn out from the trip, I slept fitfully and woke up the next day looking forward to a meeting I had scheduled with the Chi Gung master, Don Rubbo.
Chi Gung Taken to Another Level
He greeted us at the door, and led us down some stairs to his office. His unpretentious house was decorated with many Asian tapestries, hangings and small statues, and at least one shrine. Almost immediately after we sat down, Don handed me a small vial that looked like paraphernalia. "Frankincense," he said. "It is able to pass through the blood-brain barrier. Breathe it in…not too fast, just normally. You can also put it on your tongue and touch it to the roof of your mouth or dab it just below your ears. This is an ancient remedy." As I breathed it in, I felt a pleasant calmness, but nothing dramatic.
We talked about the application I had filled out, detailing my medical history and asking me what I was hoping to gain out of working with him. I can’t remember exactly what I said, but it was along the lines of "I am aware that certain people are able to overcome cancer. I want to access whatever it is in me that will allow me to be one of those people." Don appreciated my sentiments, as I was not assigning him or Chi Gung the task of "saving" me. We started to discuss a program that involved facing a different direction (to feel its energy) while thinking about a different color, a different element, a different season, a different organ in the body, and making a different healing sound. The theme of "cycles" was central to the idea, as the seasons repeat and the elements have relationships with each other. He also told us about people that he had, through prayer and Chi Gung, healed of life-threatening cancers. At one point, he began laughing out loud, explaining that laughter, especially deep belly-laughter, has healing properties, so it’s beneficial to have a good laugh whenever the idea strikes. The three of us let loose with a stream of laughter, which sustained itself because it amused us that we weren’t laughing at anything.
He also told us that he was going to be having a group of monks over to his house to chant all day for peace, and that I would be put on the chant list as well. He stressed the importance of maintaining positive thoughts for the entire day ("don’t even kill an ant," he said) and of not giving your negative thoughts or fears any place to go. He also instructed me to visualize eliminating dead tumor tissue every time I used the bathroom, which turned out to be a really easy thing for me to do.
At the end of the session, Don took me through a quick run-thru of the program. About halfway, I felt light-headed and sat down. Shortly, I had a seizure. Don and Ellen kept me quiet and everything was fine. He even said that this was a good thing, in that he had special insight into the nature of my "chi,"or body energy. He also told me to work up to nine repetitions of the exercises, starting slow, as one might with running or weight training. I had taken notes, but turned them into a chart with the colors and the directions and everything in a visual shorthand.
The next day, I tried the program myself, out on the deck. It was suggested that I use a chair at first, and I did. Forgetting the instructions to work up to it gradually, I commenced nine repetitions of the "East" set, nine of the "South" and was most of the way through the "Southwest" portion when Ginger started barking at me. Then I had a seizure at the same point as I had a day earlier. I found this very interesting because I had read about dogs being able to anticipate seizures, and I had just seen a demonstration of it. Also, because a very specific thing seemed to be triggering the seizures. Despite this, I completed the program and did some additional exercises, trying to keep myself calm and positive. A couple of times at dinner, Ellen and I erupted into spontaneous laughter, causing the kids to say, "Stop it, you’re scaring us!"
Although we usually went to a support group that night, we decided to stay home and cocoon. We retired fairly early and went to bed. As I was falling asleep, I felt my entire body tingle in a way I had never experienced. It wasn’t a scary feeling, but very pleasant. It lasted for a few seconds and went away. A minute or two later, another wave of tingling, less intense, swept over me. The next day I told Don about this and he said "Oh, that’s very good!" I had been aware that I had been feeling better, although since every day is different, I hadn’t paid that much attention. But I continued to improve throughout the day. That evening, I had scheduled a recording session at my great friend Joe’s Studio P (Home of the Hit) with some other ex-bandmates and good friends to put background vocals on the album I’ve been making of "millenium protest songs." Progress was slow, but the results were great…and I lasted until after 11:00.
The next day I scaled down the Chi Gung routine and got all the way through with no seizures. Although I’d have a weak moment here or there, I felt even better than I had the day before. I felt an incredible surge of energy when late in the day, the office radio began playing George Harrison’s "My Sweet Lord’ and I ran to the studio for my dobro, which I brought back to add a simple but surprisingly effective counterpoint to George’s own slide guitar work. That adrenaline high lasted well into the evening.
The next day, I added more Chi Gung to the program and had no problems. I had now gone 48 hours without a seizure for the first time in nearly a week…and feeling really good. I continued to sniff the Frankincense and keep good thoughts in my head. I did have a couple of what seemed like "ghost seizures" that were far less intense and easily squelched. Best of all, I wasn’t concerned about my upcoming MRI, because I was sure it was going to be good. And even if not, I had set up some contingency plans. But I was more than ready to accept a miracle.
The next day, Ellen had some tennis set up and asked if I’d like to go for a walk while she played at her club in Larkspur. I felt great and thought it was a good idea, as I had not had any exercise in awhile, unless you count the Disneyland thing. It was a gorgeous day, and I set off in the direction of Kent Woodlands, planning to walk through the town to the flank of Mt. Tam, where there was a fire road entrance. Figuring the downhill would be easier than the uphill, I set off vigorously, water bottle in hand. Gradually the streets became steeper as I began my climb, finally reaching my destination and being treated to grand views of Marin and the Bay. I noticed as I began my descent that it was a bit more difficult than I had anticipated, probably because the Tamoxifen I was taking had an effect on my balance. After a mile or so, I thought it wise to sit down for a moment, and had a seizure. Soon, I was able to make it subside and continued down the road. Because my left side was not functioning normally, I was somewhat out of balance, and my back began to hurt. Not wanting to risk further injury, I called Ellen on my cell phone and had her pick me up. Nonetheless, I felt encouraged by the episode and the distance and elevation I was able to walk, and chalked the seizure up to "biting off more than I could chew."
Ellen’s tennis team was playing a match later that afternoon, although she was not scheduled to play. She wanted to root for her team, so I went along, planning to finish the Neil Young book I was reading. The tennis match became an epic struggle, neither side giving an inch. I finished the book, then joined the group of women watching the match. Finally it was decided (by a 13-11 tiebreaker) and Ellen’s team lost. Unfortunately, we had been invited to an Oscar party at 5:30 in the East Bay, and it was quickly approaching 4:00.
We rushed home to change and prepare a dish for the party. There was a lot to take care of, and not much time to do it, although I really wanted to do my Chi Gung routine. I rushed it a little, and had a small seizure at the end. Again, I wasn’t concerned, feeling that the time crunch created enough stress to account for the seizure. Ellen offered me the option of not going to the party, but I felt that I would be "giving in to fear" if I stayed home, so I went and had a great time, despite the frenzied shrieking of a few women whenever Adrian Brody appeared on screen.
The MRI Results (hold on, we’re almost there)
My MRI was scheduled for 7:30 AM the next morning, which meant leaving the house before 7. I continued to feel like I had my mojo working, and fully expected the results to support the way I was feeling. The MRI itself was like all the previous ones, loud but uneventful. Afterward we went to the neurologist to review the results. His smile and cheerful demeanor gave us no indication as to the results, as he had been equally cheerful the time before. Unfortunately, he did not have good news. The tumor (or what appeared to be the tumor; abnormal tissue that shows up as a different color can sometimes be something else) was considerably larger than it had been just two months ago, and was nearly as large as it was prior to my surgery. The neurologist went over a handful of options available to me that I could think about, and he didn’t have to tell me that I shouldn’t take too much time to make up my mind.
My previously-made appointment with Dr. Saputo turned out to have been a good move, as I had reached the point where his input would be invaluable. I’m meeting with him this Thursday. I’ve also made an appointment next week with Dr. Keith Black in Los Angeles, who has possibly the best "bag of tricks" for brain tumor treatment in the world. Among his groundbreaking efforts have been techniques such as chemo medicines that penetrate the blood/brain barrier, a dendric cell vaccine treatment and focused microwave energy. That appointment is Tuesday, and if the consensus between Dr. Saputo, my other medical team members and my own instincts is that going to Dr. Black makes the most sense, I will fly down to LA with my scans to talk with him.
I still don’t know where this journey is going to lead, but I’m being given interesting opportunities to explore phenomena that occur outside the realm of medical science and the intellectual mind, such as the wisdom of the body (sacral-cranial work) of ancient people (Chi Gung) and of animals. I’ve heard many stories about animals with medical insight that we lack or have somehow lost. There is much research going on in this area, from dolphins being used to help perform sacral-cranial work to dogs that can sniff cancer. My own experience with Ginger bears this out. And, of course, prayer. I have been the beneficiary of countless prayers from you and many people I don’t even know (Ellen has personally said enough prayers to move a few mountains) and have felt their impact. It has made me feel noticeably better lately, even as I train myself to receive them as fully as possible. All of these things have given me the feeling that I have available to me, from within myself, what it takes to prevail over this, and that if I stay true to this path (and don’t fall off due to fear and negativity) it’s all going to work out.
Of course, I’ve also considered that it may not. But believing it’s going to work...even if it turns out not to...is infinitely better than living life in fear and despair. In that spirit, I can only add the following: HAHAHAHAAAAAAAA HAHA HAAAAAA HAA HAAAAA HA HA HA!
Peace and love,
Dan
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