Searching for my cancer "cure."
|Home||Discovery, the Diagnoses||Brain Surgery||Recovery Begins||MRI head scans||Funeral Postponement Party||Peripheral neuropathy|
|GammaKnife, tumor #2||Tumor #3, the lung||Chemotherapy||Blood test results||Living after chemo, part 1||Living after chemo, part 2||Living after chemo, part 3||My cancer "cure"|
Purpose: My purpose in making these pages is to help people. My hope is that seeing how cancer treatments (brain surgery, radiation, and chemo and even some alternative treatments) can go in the year 2009 and 2010, will ease minds and give some hope, comfort and success. I went through the first three, although not as far as they wanted with the chemo, but far enough to know what it's like. Now it's time to go in other directions.
1/4/2010 New MRI and CT scan showed growth in brain tumors and it's moved into my liver where the tumors are growing too fast. The liver is enlarged and not doing too well either. Blood tests are showing lower liver function or something. And now I've got peripheral neuropathy in my legs. Good, another challenge!
1/14/10 Appointment with Dr Bogaev went very well, he's ready to move on these problems, and I already have an appointment with Dr. Wissinger for possible use of the Gamma Knife or Cyber Knife radiation surgery. And soon will see the liver Dr to see what we can do about the liver. In addition, I am continuing treatment with Dr. Fritz to find the true cause of all this, minimize or shrink tumor growth, and acupunture to help heal the neuropathy.
I'm getting conflicting reports from the oncologists, some forecast my imminent death, HA. Last week I got the same prognosis that I received last JUNE, only a few weeks to live left. But I'm over 6 months past June now, and expect to live many more years.
1/16/10 Isn't this interesting? I received "normal" prognosis of my condition, and "normal" life expenctancy forecasts that were quite short, even WITH "normal" treatment. Well, I've never BEEN "normal", and that short prognosis just did not seem right to me, so Alison and I began to investigate the American "War on Cancer" and the many alternative treatments (approved, unapproved, and unproven) as soon as I was diagnosed May 13, 2009. Our focus has been NOT to find a "cure for cancer", after all that has been the focus of the US "War on Cancer" for over 40 years, but without real success. While we have made progress on "fighting cancer" in many ways, we have rarely found any "cures" for it. There are so many different kinds of cancer, and perhaps caused by so many different things, it is very complicated.
In addition, our human bodies vary widely. So if a cause of cancer is found in one person, the cure may not work in anyone else! I did continue treatment to control my tumor growth, while Alison and I learned more about everything. I even tried chemo therapy, which did shrink my tumors but gave me so many very bad "side effects" that I had to stop after 8 "treatments", or die from the chemo. I knew little about chemo before, and found it very interesting. I was able to experience many of the "side effects", and they were and are indeed very bad. While the chemo does attack the tumors, it also attacked my body, part by part, and one function after another would be damaged and start to shut down.
Weekly blood tests helped us monitor what was going on inside me. Dr. Preston ordered very good tests that showed a lot, and I could follow what was changing and modify my diet to help keep my results near normal. One of the first things to begin to go, which was expected, was the death of my bone marrow. As it died, I could watch my blood platelet count go down and other blood cell indicators would go out of range. Alison found out that blueberries and spinach could "help" with bone marrow preservation, so I included these in my diet even while still on chemo. It did help, a lot, and my platelet count came back up, even while I was still on chemo and it was killing my bone marrow.
Now chemo became a game of treating symptoms, not one of finding a real cause. The Doctors had an arsenal of drugs ready, and if I lost too much bone marrow for example, they had prescriptions that could stimulate the marrow I had left so I could continue chemo treatments. I contracted some of these effects, like thrush, and for that one I received two prescriptions to control it, which did well with the thrush. Another, worse, "side effect" was heart damage. I was monitoring my blood pressure, blood oxygen, and pulse rate daily, and keeping some records. I noticed my heart changing, for the worse, in several ways. Higher pulse and pressure, irregular heartbeats, and incorrect pulse rates. Also my blood oxygen percentage went down. I had to walk slower and slower, and one day I was sure I had a heart attack that lasted about 30 minutes. Perhaps they had yet another drug to help with this, but I did not get one. By this point I was experiencing other "side effects", like lung congestion, paralyzed intestines, bloating abdomen, pitting edema in my feet, loss of strength, and so much more. We found out that one "side effect" of chemo can be actual heart failure and death. Side effect? Death?
As the chemo went on, Alison and I continued to discover additional "side effects" of the chemo drugs I was getting, and it was a long list of "side effects". All effects were damaging my body, and in ways we didn't altogether understand, but basically knocking my health down and heading me toward deaths door. Somewhere in this, there was a chance that the chemo would also find and effect the actual cause of the uncontrolled cancer. Unfortunately, if it did find the "cause", the chemo could just as easily attack the cause and make it worse instead of better, actually making the cancer problem worse.
I believe that we humans have the ability to control our "cancers", and most people have and use forms of cancer 6 to 10 times during their lifetimes for various things, as long as we remain healthy. Reports indicate that we do have the ability to use cancer cells to regrow parts of our bodies and then stop the cancer, convert the cancer cells to the kinds of cells we need to regrow, and use them as normal cells. Hence, many humans contract cancer over and over, but remain healthy and use it, and live to a very old age. To me, "cancer" is not normally a "disease" at all, but a SYMPTOM of a cause or disease. If this is true, treating the "symptoms of cancer" instead of finding a cure can help people live somewhat longer, but does nothing for a true cure and remission.
The more we learn, the more we believe that to "cure" a cancer it is necessary to find out exactly how and why our bodies mechanisms have been damaged, and to fix THAT. Not an easy or simple task, involving the correct tests is important to get the right answers, and that requires knowledge, guesswork is unlikely to work. At the point when I stopped the chemo, I was recommended to Dr. Fritz of Austin, a Naturopath, to assist us in finding out what it was I had lost in my defense mechanisms, and then we could attempt to remedy the problem(s). She in incredibly knowledgeable and educated, and one of the first things she recommended was a gartrointestinal test, to find out what parts of my systems were not working properly. Wisely, she did not want me to just try different possible aids, but to use aids that would directly treat any problems the test showed.
The test results from the gastro intestinal tests DID show some problems that the other Doctors had missed. I had lost my digestive enzymes completely, and my digestion had stopped! This can cause many problems as the materials to rebuild my immune system and other functions are just not produced as normal, not good. So Dr. Fritz put me on an enzyme supplement, a Bio Enzyme, a chewable tablet, that I take with my meals so that I can digest my food properly, and I use it. We're not yet sure of the "cause" of the loss of my enzymes, could be from the chemo or various other things, but now we do KNOW the enzymes were gone, and while we continue to monitor this and look to fix the cause, I am back to digesting properly.
The test also showed that I have two bacterial parasites in my intestines, and one is not a good one. Knowing which ones I have, means I am treating them with the correct herbs, not antibiotics. We will test again later to find out if they're gone or not. This test also showed I have developed an intolerance to gluten, soy and dairy products, so I now avoid those foods as well as preservatives, food colorings, and additives. I had no idea before the test that I was "intolerant" of anything. Dr. Fritz was also concerned that I may have low levels of Vitamin D and Vitamin 12, so I was tested for these also with a special blood test. My levels of these came back ok, so I do not take much of these vitamins.
About 3 months after I was "off" chemo, I developed Peripheral neuropathy, which is damage to the nerves and causes numbness, pain, loss of strength, loss of balance, co-ordination, and the ability to walk. Starting in the feet and hands, and spreading to include both legs and part of my arms, it is very annoying to say the least. For a week or two I was using a cane to steady myself and so I could walk, but slowly and with difficulty and not very far. Dr. Fritz began acupuncture treatments to help, and they really did seem to help stimulate my lost nerves, so they continue. Peripheral neuropathy is not limited to cancer people, but also affects diabetics and other humans. Normally treatments do not help, and it is common for the problem to stay with a person for many months or years, and even then not be cured completely. It "can" be caused by chemo. It is unacceptable to me to wait months or years to get my legs back, I want them back soon. I noticed losing a nerve to my right foot, I became unable to lift the front part of the foot at all, even sending a strong signal down that nerve produced zero movement, that nerve was not functioning. Alison and I found out that we DO have an ability to repair our nerves, IF we are healthy, but only if the proper nutrients to rebuild the nerve sheath are present. We also found out that a combination of B6 and folic acid CAN provide the proper sheath building materials, if taken properly. At this time Alison found at Atkins, something called Unique B12, which also contains B6 and folic acid! I'm taking that now, because it also contains Methylcoballamin, a form of B12 that is different. Also, this B12, B6 and folic acid must be kept out of my stomach, or my digestive juices there will destroy it. The Unique B12 is a "sublingual" pill, which dissolves under my toungue and avoids my stomach. After taking this for a couple of weeks and having acupuncture, that nerve started working again, and now I CAN raise the front of my right foot at least some. Apparantly, I am ALREADY regrowing that nerve, and others, and I have been able to stop using a cane to walk. I still have a long way to go to get my legs back, but to have made a start already is very encouraging. I hope my neuropathy is caused solely by the chemo, and as that wears off I will be able to repair the nerve damage, and walk two miles a day again.
Parts of this saga are very bad, and other parts are very interesting and educational. On the whole I am maintaining my optimism and making progress, and I did not die yet after all. In fact, I often feel quite well. Today is a wonderful day. Today is also my next walk day, and I can walk a little farther I hope, and rebuild my strength another bit and regrow more of that leg nerve. I'm resting better and getting more sleep, which is also very important, but I'm only able to sleep a few hours per day, but that is also an improvement.
What comes next? I do not know, I keep being surprised by the "side effects" of chemo occurring so long after I stopped the chemo treatments. Chemo is powerful indeed, and long lasting. In two days it will be 5 months since my last "chemo therapy", and I don't know how long it will have effects inside me. My goal now is to return to WELLNESS, and health, and have the "cancer" fade away. I'm not there yet, but this does happen to many people, so I know it may be possible. I believe it IS possible. I've had this "cancer" about a year now, brain, lung and others, and yet I'm still alive and doing quite well at times. Constant effort to change on my part, to change back to WELLNESS. I am optimistic that this will work, if I do it properly. I do intend to live another 50 years to an age of 109, we shall see.
1/17/10 Acupunture treatment #6 was today. They continue to become easier, I just lay on the table and relax. I thought it might hurt, but today of all the needles I only felt one, it only hurt a little and then the pain went away. I kept dozing off it was so relaxing, and wasn't painful at all. Afterwards I did feel better, and had less pain from the neuropathy. My legs again seemed to work a little better too.
The last set of scans from 1/4/10 showed some growing tumors in my brain, and some growing in my liver, enlarging the liver. I have an appointment with Dr. Wissinger for the brain 1/18/10, he's the head of the Gamma Knife at Methoist and did my first Gamma Knife suregery which was a success in eliminaing a small tumor near the center of my brain. I'll have another appointment with another doctor who knows more about liver problems. While my main focus is on returning to WELLNESSS, this may take some time, so controlling the growing tumors is important for me to stay alive while we figure out what I need to be well again. I need time.
2/1/2010 I'm well back in the hospitial, seemingly guarding the IV machine which is fairly constantly giving off it's alarm signal as it tries to continue giving me the proper dose of antibiotics. Keeping me awake this morning, alas. Don't have much to eat this morning either but I'm trying. BEEP BEEP BEEP. I think I'll have a glass of milk and some Ezekial bread and butter.
2/6/10 David had brain surgery on Feb 4th. One large tumor and 2 smaller ones were removed from the cerebellum. There are 12 other brain tumors, which are inoperable.If you want to write, please write to me at firstname.lastname@example.org. Thanks. Alison
2/10/10 - David has been transferred to a neurological rehabilitation hospital facility in San Antonio. I can stay with him. Keep the boat ads coming! They are terrific in this hospital and are trying various therapies to help David to stand up and to walk again. He is very confused.
2/21/10 - David has been moved to a skilled nursing facility near home. So I can sleep in my own bed at last. He is being looked after very well at the nursing home under hospice care.
2/24/10 - David Luckenbach died on Tuesday 23rd February 2010 at 6.28 pm. He died peacefully. His greatest wish was that Sailing Texas should continue. So that is what we must do. I was with him at the time as well as some of his family. The website email address of email@example.com will continue. Thank you. Alison.
A family memorial service was held on March 7th. We will hold a sailing party on lake LBJ on May 16th. Please tell Alison if you can come.