Wednesday, June 19, 2013
It’s been a long while since I’ve written a blog entry, in fact, almost a year. A lot has happened during that time, much of it concerning the cancer that started my fingers to blogging in the first place. I’ve learned a few lessons during the last year, and I’m still enjoying life in Oly, even on the days when it’s been far too long since seeing sunshine.
As you know, I’ve worked with a lot of alternative therapies to keep my body functioning well while undergoing treatment. And I’ve outlived the two other women I’ve known who had the same aggressive triple negative breast cancer. Despite my best efforts, the tumor continued growing and became more threatening, with indicators it had become inflammatory. This is pretty much a death sentence, so I’m lucky to still be here – and not only that, but feeling good and looking healthy.
One of the things I've learned is that PET scans, which show cancer cells that grow by feeding on sugar, aren't always accurate. I had four clear PET scans even though the tumor in my breast was continuing to grow. Apparently my tumor didn't get it's growth from glucose, but, just like normal cells, from oxygen. I only recently learned that cancer, or at least some cancers get energy just like normal cells, using oxygen. So much for the often touted "cancer can only grow in an oxygen-poor environment."
Most alternative cancer treatments and cures rely heavily on the body’s ability to detoxify through the liver. As I described in post eleven (http://wwwadifferentway-rebecca.blogspot.com/eleven), the genetic flaw, MTHFR, cuts down my ability to detoxify to somewhere between 10-30% of normal. So, while I really, really, really don’t like putting nasty chemo toxins into my body, adding even more to the burdens of my already struggling liver, I once more signed on for a round of chemo, to be followed by a mastectomy, starting last October.
I did find a doctor who isn’t opposed, and even encourages, the use of natural therapies to enhance the use of chemo drugs, so I was very pleased with Dr Ben Chue at Lifespring Cancer Treatment Center in Seattle. He impressed me at first because, after looking over my past paperwork for a few minutes, he seemed to remember everything he had read. Amazing! And on my first day of treatment I was quite surprised to see him talking with each patient who was being hooked up. He asked and answered questions and never seemed to be too hurried. Previous experience had shown me doctors who set the protocol up and turned it over to the nurses. To actually see the doctor and ask a question or two required an appointment. But Dr Chue was available every treatment day, and I really appreciated that.
Another reason I was happy with Dr Chue was because he had introduced metronomic chemotherapy in Seattle many years ago. Instead of giving a huge dose of the drugs every three weeks, he gave one third of the dose weekly. It meant a trip to Seattle almost every week from late October through early March, but it also meant I didn’t get as sick and weak as many cancer patients. He also used a most effective anti-nausea medication, Aloxi, as part of my weekly infusion. Aloxi works for five days, so I never had the unfortunate experience of being nauseated and unable to eat.
My hair began falling out like crazy just after Thanksgiving. Vacuuming the loose hair didn't help! So I went to Dave's barber and had him trim what was left back to half an inch. When that continued falling and getting into everything, I had Dave shave me bald! Yikes! Right in the middle of winter, it was back to wigs and caps. I really don’t like wearing a hot, itchy wig, and eventually gave it up in favor of caps and scarves tied into turban-like arrangements.
My biggest side effect was tiredness. By late December I spent a lot of days in the recliner. I’d get up feeling fine, eat breakfast and empty the dishwasher. Then I’d sit down in the recliner and wake up two hours later! I really do see the superiority of the Insulin Potentiation Chemotherapy (IPT) I had in Arizona in 2010. I actually had more infusions in the seven weeks I was there than I had this past winter, without the side effect of either nausea or tiredness, and without my immune system being compromised to the point where I couldn’t be treated. I did lose my hair, though most patients on IPT don't. But it was clear to me that much more of the drug went straight to the cancer cells and less of it went throughout my body. The tumor responded quickly that time, but much less so this time. Of course, cancer is one tricky devil which often learns to adapt and become resistant to drugs, so perhaps that was the reason it responded less well this time.
On St Patrick’s Day I turned 70 and we had a big party for the occasion. What a delight to see so many old friends and relatives in one place, all to celebrate with me four days before the planned mastectomy. Friends gave me money for a spa day, and I’ve yet to treat myself to this pleasure, but I will soon. Scott flew in from London to help celebrate my birthday as well as to be here for surgery day. Erin, Katie and Keegan came from Enumclaw for the birthday party.
March 20 we drove to Seattle for surgery the next day. I had chosen a surgeon from the Seattle Cancer Care Alliance (SCCA) who operates at the University of Washington Hospital. A woman from Oasis had sent me several articles about how to help prevent the metastases that surgery often stimulates. I was prepared, and I requested a regional anesthetic, called a paravertebral block, which numbs the area of surgery with shots near the spinal cord. This meant I would need much less general anesthetic. As a result, I had none of the usual side effects, which are mostly caused by anesthesia and narcotic pain medication. In fact, over the next couple of weeks of recovery I had no pain to speak of, and never filled the prescription for Oxycodone.
Surgery wasn’t until 6 PM, and Dave and Scott finally saw me again about 9:30. It must have been a very long day for the surgeon, because I was originally scheduled for 5:30 AM. I was thankful for the schedule change, but amazed at how long the preparation for this type of anesthesia took. Still, it was well worth it!
The hospital was filled to 100+% capacity, so they wheeled me back to the pre-op area, where I spent the night in a tiny room, with Dave at my side in a recliner. The nurses were attentive and helpful, and I went home the next morning. Wow! Drive-by surgery. Practically. But I was feeling good and happy to be back in my own home.
So, the next big question is what to do to prevent a return of the cancer. Yes, there was still live cancer in the tumor, even after a round of chemo, and yes, it had spread to seven lymph nodes. Dr Chue wants me to continue chemo, but change the drugs. The SCCA folks want me to do radiation. The local oncologist, Dr Ye, thinks I should do both. But, I’m thinking, why put my poor body through more toxic chemicals and radiation, both of which stimulate new cancers?
As part of my research, I had an appointment with a medical oncologist at SCCA a couple of weeks ago, to see if there were any clinical trials of a specific nature that I might qualify for. The first doctor came in, read a summary of my medical report, and said, “We don’t see too many people like you.”
“No,” I replied, “I should be dead by now, right?” She agreed. Later, another oncologist came in and said they don’t really have a standard of care for someone in my situation. But, even so, they both thought I should have radiation and they made a couple of other suggestions.
Of course, in the perverse but usual way, I didn’t think of this at the time, but a couple of hours later, as we ate dinner, I told Dave, “You know, they were surprised to find me not only alive, but looking healthy. That tells me that what they are using on women with triple negative breast cancer isn’t working very well. Maybe instead of recommending the things they do, they should have been asking me what I’ve been doing to be as healthy as I am.” Dave agreed.
I’ve been working with David Lerner, an acupuncturist with a special interest and study of cancer. His recommendation was for a drug called Tetrathiomolybdate (TM), which takes excess copper out of the body. It turns out that, in order to grow, cancer cells require a lot of copper. Normal cells also need copper, but to a much lesser extent than cancer cells. So the idea is to remove excess copper and keep the levels high enough for normal function, but low enough so cancer cells, which may still be lurking, cannot grow and spread. So I’m doing that and hope to have my copper levels down sufficiently in another few weeks. It amazes me how easily we are all depleted in other minerals, but how long it takes to get rid of extra copper.
A year or so ago, as my search for cancer alternatives continued, I watched a film on my computer at the website www.phoenixtears.com. It is all about the healing power of cannabis oil, and how to make it. It sounded promising, but I didn’t have a clue where to buy the stuff, and when someone told me of a source, it was far too expensive for me to consider. However, the political climate around marijuana has changed dramatically in Washington State. I discovered I can now buy cannabis oil, with a doctor’s recommendation, at half a dozen dispensaries right here in Olympia. A syringe, which lasts about three weeks, costs $50 cash. No credit cards, no checks. So I’m now taking a dose, about the size of a grain of rice, every evening. The side effect? I’m sleeping like a baby!
Here’s the interesting thing. Marijuana comes in various types. The cancer-healing chemicals, cannabinoids (CBDs) are most prevalent in the Indica type, while Sativa carries the most THC – the stuff that makes you high. Not only that, but the CBDs actually counteract the THC to a degree. So I don’t get high. Dosing correctly has been problematic, but if I get too much I just don’t have a lot of ambition the next day. More recliner time!
Most of the research on cannabis and its’ ability to cure cancer and other diseases comes out of Israel and Spain. There is good research showing it kills cancer cells and prevents them from spreading. An excellent program to watch, originally on Wealth TV, but also found on Youtube, is Marijuana - Miracle Cure 2 www.youtube.com/watch?v=H8eybPn6cLU. So I’m counting on my two-pronged approach to keep me cancer free. I haven’t said no to further treatment, but I’m hoping to avoid putting my poor body through a chemical wringer once again. And besides, my hair is growing and I don’t have to wear caps and hats everywhere I go these days!
Posted by Rebecca at 8:13 PM