This month marks a year since our trip to Houston. I look back on that month in Houston where Kenny sought treatment for his cancer and it appears dark, scary, and full of anxiety and at the same time, filled with the miracles of perfect timing and spiritual assistance. Overall though, I would have liked to skip the actual day-to-day-ness and just learned the lessons. It was the toughest four weeks of my life, not to mention that Kenny was very obviously losing one body function after another daily. So while Houston is probably a nice place, not so much in my memory.
When we left the Gerson clinic in Tijuana at the end of November 2009, because the melanoma had infiltrated Kenny's brain, it was recommended that we look into the Burzynski clinic in Houston. They are known for working with cancers in the brain. We applied, some 60 pages including all his lab reports since the original mole was diagnosed in 2000. He was accepted for a start date of Feb. 9, 2010. We took all the steps to prepare for the trip -- this last-ditch effort to halt the onslaught of the monster invading his body. It was going to be two weeks of out-patient care with overnight stay at a nearby hotel, and then back home to Los Angeles for follow-up treatment.
The day before we left, one of our dear friends who is a runner, dedicated a 5K run just that weekend to Kenny's recovery. She showed us the DVD. It was a sweet moment of prayer and communion. By this time Kenny had lost about 40 pounds, was looking rather thin and felt weak compared to his old self. They'd found a lesion in his digestive tract that was bleeding and he'd already had several blood transfusions. He needed assistance showering and drying off and was slow and deliberate in his movements and not able to drive. Another long-time friend offered to assist Kenny with showers in the mornings and that was such a treat for all of us. You see, I had been showering Kenny myself for several weeks, and it was one of the most precious moments of the day. An honoring of his body, a blessing, a sweet and profound time of taking care of his body. He loved it and I loved it. And when we asked Kev to assist so I could prepare breakfast at the same time, he loved it too. Such a privilege to care for someone so intimately.
Back to Houston. At the airport, porters met us at the curb with a wheelchair and escorted us to the plane, making sure we were comfortably seated and all tucked in. In the meantime, Heartfelt Organization and a minister in MSIA who lives in Dallas had enlisted the assistance of ministers in Houston to help when we arrived. Jesus bought all our groceries. Yvette was to learn to make juices for us and clean the kitchen in our suite almost daily. Joaquin came to visit about three times a week to chat and hold the Light. Baba was to arrive a week later and visited every single day and did errands as needed, and spent the night so I could rest and arranged a ministers meeting right in our little hotel suite. Jesus did the laundry, made the bed, and helped Kenny shower many times during our stay. Our little army of soldiers was on the march with whatever was needed.
The second day at the clinic, Ken was scheduled for a scan to assess the extent of the melanoma. He wasn't allowed to eat or drink anything until after the procedure, which was late due to another patient's emergency. I was frantic with worry because he had been getting dehydrated very easily. I called home (the seminary) and asked that an all-call go out to everyone in the building to send Light to Kenny and the procedure immediately. This comforted me a little while, forever optimistic Kenny was certain everything would be OK all along. I prayed for Divine Intervention and finally the procedure was under way -- four hours after we were supposed to go back to the hotel. Finally he could eat a meal and drink his precious carrot apple juice -- we were still following the Gerson protocol. That was Wednesday. Thursday we saw the nutritionist who immediately put Kenny on a protein-rich diet -- his blood work showed advanced anemia and he was very weak. It was time to "beef" up his intake after five months of a completely vegan diet, part of the Gerson plan. This was another blow to the belief that Kenny could reverse the melanoma march.
Friday we had a telltale appointment to view the scan with the doctor and the radiologist. Both were stunned at what they saw. Kenny's entire torso was blackened on the silhouette drawing and on the actual scan pictures, tumors lit up like lightbulbs everywhere, most of them concentrated in his torso, but also scattered throughout his limbs, neck and head as well. The radiologist was heard saying, "I've never seen so much involvement in any other patient." We'll try to help, they said. Kenny said, "Maybe I'll be your Burzynski poster child." We walked out of the clinic that day heavy with the reality of what we saw. And as if the day before wasn't enough change to handle, today made its way into our awareness with a one-two punch, sending me reeling with tension and worry.
The next week presented the inevitable complication, Kenny needed another transfusion. It was off to the First Street Hospital to be admitted to their emergency room to wait for blood to arrive. It took all day for blood to show up. In the meantime, our own crew of ministers came to us with food and juice, and sweet Grace drove all the way from Austin with delicious homemade soup and bread. How tenderly we were ministered to, how dear these people who hardly knew us were caring for us. I was in tears most of every day, either from gratitude or from worry or from venting anxiety or sadness or resignation, or lack of sleep or... Kenny too, but mostly from gratitude.
Finally, the next day all the blood was now in Kenny's veins and he was released to go back to the hotel. Some more visits to the clinic in the next few days, some more good food, juices, clinic-prescribed drugs (some of which were chemotherapy that presented their own set of really uncomfortable symptoms), and it was back to the hospital again for the next blood transfusion. Only this time he was to be admitted as an inpatient for 10 days to handle one advanced melanoma symptom after another. Clinic drugs were suspended while IVs and blood were administered along with his anti-brain swelling medicine, his thyroid medicine, and a host of other pills. In his later blogs he talks about how precious it was to have a bowel movement. It became tougher and tougher and one remedy after another was suggested. None worked very well, the daily battle to complete the cycle of eating and eliminating dragged on. After months of urinating a surprising couple of gallons each day, even urinating became a problem until the Foley catheter was inserted bringing blessed relief. All the while I slept in the visitor chair in the hospital room night after night, going back to the hotel every few days only to shower while one of our dear friends stayed with Kenny. I made sure that he was never alone, never without an MSIA minister or initiate by his side.
It was time to transfer Kenny from the ICU floor to a regular room in another wing. The internist visited to draw up the release papers. He suggested Kenny might want to think about getting home as soon as we could and arranging for hospice care. Kenny declined and said he would resume his Burzynski therapy. The doctor and the nurse took me aside outside the room and said with urgency that there was only a short window of time that we had to go home before he could not travel on conventional flights. Eventually he would need a special medically equipped charter flight that would be cost-prohibitive. I couldn't believe what I was hearing. I was hearing and I was seeing with my own eyes, and yet I couldn't fully grasp that Kenny was slipping away at such a fast rate now. Every day another body function was compromised.
Just a day later, the gastroenterologist blustered in after we were settled in the new room and he announced, "Do you know about a bucket list? Well it's time to make yours. Eat anything you want and do whatever you want. OK, Buddy?" Did all our mouths drop open? Did we hear him right? Who trained him in his delicate bedside manner? I was livid with disbelief. Couldn't say a word, neither could Kenny nor Baba. We just let him disappear out of the room as if he never showed up. Kenny was bent on continuing his Burzynski therapy.
Some time between hospital visits in Houston, Kenny said to me, "Carol, I don't think I'm going to make it." I knelt down beside his chair, began to sob and said to him, "Oh Kenny, don't say that, you're still in treatment and don't we believe it will work?" His response was something like, "OK yes, we're still in treatment." Now it seems apparent to me that what he really meant was, "OK Carol, I know you can't handle it so I won't talk about it anymore. But the reality is I'm dying." And I am reminded that just about a month ago I heard him talking to a friend about a favor he was asking someone to do for him and the phrase, "You wouldn't refuse a dying man, would you?" flew through the air and stuck in my skull like a speeding bullet. But just like all the other signals that he was declining rapidly now, I stuffed that one somewhere in an airtight compartment in the far reaches of my consciousness. Denial -- that my strong, tall, handsome, smart, funny and beautiful husband was slipping into the "Well of Souls."
But I did listen to Doc Number One and suggested to Kenny that we continue the Burzynski treatment at home, that we do what we could to get home while he could still get on a plane and off again. He was walking very little now, had to be hoisted out of his chair and tucked into bed at night, but we knew what we had to do. Making arrangements to go home was in itself a relief. The timing of every occurrence in Houston was perfect. We prayed Spirit would meet us at the point of our action and it did, time and time again. We asked and prayed fervently that Spirit would fill in the gaps when we didn't know what the next step would be, and it did repeatedly.
If I had been more present with Kenny I would have listened to him talk about how he felt about not making it. I would have opened my mind and heart to hear him and hold him while he talked. I would have remembered when my father died, I did the same thing. He said, "Carol, it won't be long now." My answer was, "Oh Daddy, you seem to be getting better, aren't you?" He shrugged his shoulders and raised his eyebrows in an expression of doubt and passed away three days later. So while memories of Houston flood up during this one year anniversary since we embarked on that never-to-be-forgotten journey, I'm here to suggest you come present with your loved ones and talk about the inevitable -- one of you will leave this world before the other and it will be impactful and profound -- and oh so worth sharing about from the sincerity and tenderness of the spiritual heart. In another article I'll talk about Kenny's plane ride back home, and in another I'll talk about why I was in denial -- such a strange set of responses, but completely understandable. Next time.
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Please feel free to respond to this blog either in the comment field or by e-mail directly to me at carol.jones43@yahoo.com. Some of you have been sharing your own tender stories which I encourage. Writing can be healing and also help a lot of other people. If you want to catch up on the earliest articles, log on to http://www.kennethhjones.wordpress.com. God bless you and may you embrace each experience as an opportunity to love and forgive and learn and come present.