Summary: Slow and steady is gonna win this race. Very slow. Very steady. White count is hovering. Bowels are a battle ground. I’m getting photopheresis now, a sun tan machine for blood. They pull out a volume and use light to kill specific troublesome cells.
Calendar: Over one month since my admission on May 2nd. Day Transplant+67, post infusion. Whereas once the goal was to become an out-patient at the village, now the goal is to get me completely ready to move home. From pill taking to self care. I’m not even close right now. They call the diarrhea ‘Severe’. I have a spreadsheet of the days here.
The Key: No more diarrhea.
Bowels: Angry, angry, angry. Diarrhea day 50. It doesn’t need saying but, this is getting really old. Cramps are nasty. Brutish. At least I still have the The Shiny Candy-Like Button that delivers dilaudid/hydropmorphoned on demand. Doesn’t solve anything but it saves me a much pain.
Outlook: The doctors are cautious and no dates are being offered for getting out of the hospital. But they say ‘good’ most days. Steroids at 50 mg twice a day.
Skin: I have a slight and harmless rash, no itching, which is a good sign that the new immune system is waking up. I am bloated like soggy breakfast cereal and need to drop a couple of liters. My weight is 84d kilos which is quite about what I am in good shape.
Weariness: The fatigue is serious. A shower is a lot of effort and I rest afterward. Talking wears me out in about ninety minutes. Physical therapy is just some steps, walking in place and sit/stands, about 20. I did not get a bike. I must be monitored anytime I use a bike. So I choose group therapy over bike most days. I sit to shower and brush my teeth and save energy.
Sleep and Steroids: I’ve been getting broken up but sufficient sleep and that’s despite a medium dose of steroids twice a day. If the bowel thing turns out to be double trouble, c.diff plus graft vs host disease (GVHD), they will go to the high level dose. Steroids help mitigate the symptoms of GVHD but are the source of other troubles like killing a lot of platelets.
Entertainment: If there’s one thing I know how to do, it’s keep busy. I get cards by surface mail and send em. Learning the Uke. Strategy game with friends over the net. Tons of music listening time. Meditatation/Visualization after phone calls, shower or just to ward off irritability. Quite a pile of pretty folded paper here now. Wrote a ropey math program for the browser, just for fun. I literally could use more hours in a day and I never watch television. I do put on groovy screen savers on the PS3 or Ms. Melton’s superb disk of visuals and of course Planet Earth by the BBC. Accept no substitutes. My mythology: I’m on the extreme monk path, rattan sticks and all that.
Vistors: Mom and Dad most every day. Judy once a week. Drop an email if you’d like to visit. The timing needs to be good.
Ok, I don’t know who’d read all that but it’s a full status.
Dad’s here with me in Socal and he has a rumor of seven business in downtown Hanford burnt to the ground. So sad if true!
Medicine, Cancer Fighting
Dr. James Malone:
An important part of the ESHAP regimen is the cisplatin that is given by continuous infusion for (hopefully) maximal cell death. Early studies gave cisplatin over 24 hours, but toxicity was high, so we now give it over several days in order to reduce toxicity.
Treatment Plan: I get these over five days, about four hours a day.
- Etoposide 40mg/m2/day IV Day 1, 2, 3 and 4 – what’s most different from the DHAP regimen before. Blows up cells in mid copy.
- Solumedrol 500mg/day IV Day 1, 2, 3, 4 and 5 – basically like the steroid prednisone
- Cytarabine 2Gm/m2/day IV Day 5 -To start immediately after Cisplatin completed. Ruins DNA synthesis so abusive to cancer.
- Cisplatin 25mg/m2/day IV Day 1, 2, 3 and 4; Given as a continuous infusion over 24 hours usually.
- Decadron (a bunch) – IV – more anti inflammatory steroid. Yes, I’m a bit more prone to swearing and cantankerous behavior.
This is the most justified but non-oncology treatment
Medicine, Symptom Fighting
Red Juice — nutrient dense, from The Wellness Kitchen in Atascadero, very fresh
Green Juice — nutrient dense, from The Wellness Kitchen in Atascadero, very fresh
Soy Powder — good proteins
Green powder — nutrient density
Low Carbs — anti inflammatory and low blood sugar
Carnitine – vs fatigue, promote bone growth
Glutamine – aid recovery and repair, speed healing
Astragalus Root – fight age or age reversal (teleromerase path)
Probiotics – gi tract, there’s 100 kinds so it’s Dr. Thoring’s favorite brand
Mushroom Immune Defense – one of the leading edges of immune support
Fish Oil - omega 3 fatty acid for lustrous skin and other less visible tissues
I’ve been recommended blood electrifying, canned asparagus, reiki, laughter yoga, ayahuasca, hyperthermia/IR treatment, essiac tea, Burzynski/antineoplastons, k0mbucha, laetrile, various visualizations, indigo biofeedback and the like. How to pick? On the passion of the messenger? On the pseudo-fu of the science? The beauty of the website? That it worked or seems to have worked for one other patient or a friend of a friend. There’s scant evidence once away from the clinical trials and established regimens. And there’s a known human bias for generalizing results (some treatment works for everyone) from very small survey sizes (it worked for this one person).
I like that, in the end, I get to choose. But as a man of reason I’m perplexed, there’s a lot of sign posts and not many maps. A maze with hawkers on every corner, selling hope. Who’s true?
Six weeks past a chemo.
I am having so much fun. Really. Oh.
(CBS) Cancer may be a lot more devious than researchers have realized. That’s the word from a New York Times report that points to new cancer-contributing factors that may one day change how the disease is researched and treated.
For more than a decade, researchers were guided by principles outlined in a 2000 paper in the journal, Cell, called “The Hallmarks of Cancer.” That paper detailed how a single cell evolved into a malignant tumor through a series of mutations that essentially allowed cancer to spread in a free-for-all to nearby tissue.
But new research may give some scientists pause. First, it was thought that only 2 percent of the entire human genome harbored cancer-causing genes. Now researchers think there are oncogenes lurking within the other 98 percent of the DNA which has long been considered “junk DNA.”
That’s not all. Scientists have also discovered that most of the protein-coding cells, the cogs of cancer, are tiny microorganisms living in the body that may be involved with colon, stomach, and esophagus cancers. The last of these theories pings microRNA as the culprit. Thought to be insignificant in the DNA-coding process, microRNA may sneakily mess with DNA coded for a healthy cell by intercepting and changing it entirely, tricking the cell it into turning cancerous.
Confused? You’re not the only one.
But findings like these, presented at this past spring’s American Association for Cancer Research meeting in Orlando, Fla., tweak the prevailing theories on how cancer spreads, which can signal a need for new treatments. Especially because so little is known about some of these new theories, including the microbes – which contain individual sets of DNA themselves – and seem to communicate with cells throughout the body.
“It’s astonishing, really. There they are, sitting around and doing stuff, and most of it we don’t really know or understand,” Dr. Jeremy K. Nicholson, head of the department of surgery and cancer at Imperial College London, told the New York Times.
Dr. Harold Vamus, director of the National Cancer Institute, thinks cancer researchers should focus on these unexplained mysteries, since they may unlock cancer’s secrets.
“In our rush to do the things that are really obvious to do, we’re forgetting to pay attention to many unexplained phenomena,” he told the Times.
More than 1.5 million American men and women will be diagnosed with some form of cancer this year, while another 570,000 die from the disease.
The National Cancer Institute has more.
So I got off the couch. And onto my bike.
I bike most days, just to and from a friend’s.
But I went for a ride down the bike path along the rail road tracks to well south of town and through a lovely maze of paths in the Tank Farm housing area. Then north again on Orcutt past the fence posts topped with old boots, back onto the RR path and home.
And then felt sick.
Dear, dear. Mild heat stroke? Something. Over did it. But I feel good that I did it. Less next time.
Thinking about breaking some serious habits of rest, sloth, distraction, contemplation and above all, routine.
People often ask me, “How’s it going?” There can be lots of answers to that but primarily the question is about the progress or regression of my tumors. Last scan, I had eight, a large on in my neck. I could feel it with my hand and turning my head far to the left was painful. Now several months on an experimental drug (a monoclonal antibody), the cancer is definitely regressing. I feel more energetic and I can move my head all I like.
The first Wed of July I get a new scan and scientific analysis of the cancer’s regression.
Will it cure me? No. So while this drug is helping, a second bone marrow transplant is in the plans but no dates set at all.
I’m very happy to be heading in the right direction with a minimum of side effects.
I’m going camping with friends for a long weekend, a night at Pyramid Lake, three in the Black Rock Desert and another night at the lake all north of Reno Nevada. Group dinners, fireworks, beautiful views and hot springs. This is one of my favorite things.
My Aunt Kathy passed away last year and bequeathed a camper van to myself and my Aunt Carol. I’m excited to be sharing the camper van on it’s big trip to Nevada with Keith, Dan and Mark, all of San Luis Obispo. I’ve dubbed the monster ‘Moby Dick’ as she’s large and white, heavy and a bit slow. Tall enough I can stand in it complete with a tiny shower, toilet, stove and sink. Kathy saw plenty of the wonder of our open roads and I’m proud to continue the tradition in her vehicle.
Renewal comes in many forms and great among them are our great open spaces.