Friday, May 30, 2008
I have now not been sick in YEARS, except for a brief sinus infection (after flying on a commercial airline) that I was over more quickly than the rest of the family.
So what is it I use? Sovereign Silver colloidal silver. I CAN NOT and ABSOLUTELY DO NOT recommend any other brand/product, especially since messing with colloidal silver can mess YOU up (check out the Blue Man on the Oprah show). So PLEASE, people: do NOT go buy some machine to "make your own," and do NOT go drinking tumblers of the stuff everyday.
I gargle with SS to knock down sore throats. I put it on the sores I get from chemotherapy. I take it anytime I feel I am starting to fight infection in any way.
I do know a woman who purports to have been cured of her cancer by her use of colloidal silver, which is what got me started investigating it. I do not know what brand/product she used; I just know that my research led to my decision to use ONLY the Sovereign Silver brand for any experimentation I wanted to do on myself.
Silver has long been known for its antibacterial, antimicrobial, and I believe also antiviral properties. Last I knew, they still use it in newborns' eyes.
Thursday, May 29, 2008
If you aren't drinking green tea already, I'm wondering how in the world you are surviving all the nuclear-medicine imaging!?! I love how this stuff helps flush my body after all the CT, MRI, PET, and bone scans! I drink water and green tea throughout the day, every day; and I see the difference it has made in my health and skin.
I note beauty spas are now selling green tea to put on your face--put it inside of you, and you won't NEED to put in on the outside! But yes, you can put some on a cotton ball and blot those nasty sore spots that toxic chemotherapy can cause.
There is PLENTY of information out there on the purported health benefits of green tea, including scientific studies on the catechin polyphenol it contains, EGCG:
EGCG is a powerful anti-oxidant: besides inhibiting the growth of cancer cells, it kills cancer cells without harming healthy tissue.
Green tea is for everyone, not just people fighting disease. I start my day with a tall cup of hot green tea, sweetened with stevia (or super-enriched organic honey that contains bee pollen and propolis and royal jelly). Sometimes I throw a bag of Yerba Mate' in with it; sometimes I add a 1/4 tsp of nanized green tea.
I buy organic green tea and Yerba Mate' at Trader J*e's; my voodoo doctor (and others like him) sells a superior nanoized green tea product that I REALLY like. I noted it knocked my teen's acne down when she was regularly taking the nano green tea. Sorry, teens: Arizona green tea is NOT healthy for you---it usually has high-fructose corn syrup or sugar. It's cheaper to make your own, and you can make it healthier.
Tuesday, May 27, 2008
The neurologist made sure I understood that I'm not supposed to lift/carry ANY weight (by standards of practice/care) and that the prognosis for my diagnosis is that it is currently incurable and usually terminal. He also made sure I knew that no studies have ever been done to ascertain what weight patients with bony metastasis such as I have seen can carry.
So I made sure he knew that I'm volunteering myself as a guinea pig for anecdotal data. I also gave him the sheet on TurboSonic, and he had me tell him all the places I've been hiking (yes, there were some strenuous hikes in there). He's a hiker himself, having just climbed Mt. San Antonio (Baldy) recently.
He checked me for numbness, but all I can tell is just a bit of neuropathy leftover from the toxic chemotherapies...it causes some decrease in sensation in my hands, feets, and backside. Overall, not bad at all, esp. compared to the first time I finished the chemo series.
So what we decided is to do MRIs with and without contrast of the sections of the spine where the most recent bone scan shows spots of metastasis, then meet again to discuss the results. If there are any fractures or spinal cord compression, this test should reveal them. I'll be doing the imaging and meeting with him again over the next 10 days or so.
Monday, May 26, 2008
Here's why to fight: cancer is on the cusp of being overcome. I just had an article from AARP magazine read to me over the telephone; in it, a doctor at Dana-Farber is predicting that in as little as just TWO YEARS, we will be able to say this about one of the nastiest, deadliest forms of cancer there is: that disease USED TO kill people.
“This was one of the worst types of breast cancer, with one of the worst outcomes,” says Eric Winer, M.D., chief of breast oncology at Dana-Farber. “Now it is highly curable in many, many women with early HER-2 cancer. For those with more advanced HER-2 cancer, these drugs mean they can live years longer.”
Winer predicts that in the next two years doctors will have several more drugs that target HER-2 positive cancer. “This may be the first type of breast cancer we look back on and say, ‘This used to kill but it doesn’t anymore,’ ” he says.
So even though I have been diagnosed with the final stage of one of the nastiest, deadliest cancers, there is no reason to fear: if I can keep using the antibody the doctors give me plus the nutrition God gave us, and keep exercising my body; the resulting good health will help my body's immune system drive any cells containing this genetic typographical error out---and in JUST TWO YEARS, there may be a drug that will cure the problem ONCE AND FOR ALL.
TWO YEARS. I can't help but tear up at the words. Two years was all one with this diagnosis used to be able to expect to live. (The curve actually goes out a little higher; but in real-world observation, most of my friends have made it two years after diagnosis of metastasis. Shortest time has been two weeks. Statistically, only 50% are alive 5 years later.) But now, ALL those prognoses are WRECKED and off the table.
I am so not a cancer victim and never have been: the words "Why me?" are absolutely foreign to me. I have always felt I was the little canary in the cage, going down into the dark unknown to make sure it's safe for those to follow. I don't mind being the guinea pig, to mix my metaphors; it's a role I've had a few times in life (beginning in childhood--and definitely in jr high, when I was studied at USC for a very rare bone condition).
We are pioneers of 21st C chronic-cancer management, helping to push the test envelope so that all the warriors yet to come will have therapeutic treatment for 4th-stage cancer, not just palliative care.
Sunday, May 25, 2008
The peer-reviewed medical research I personally have read has been from scientists/researchers primarily in Japan, Europe, and the US. Forgive me if my chemobrain has it confused with another of my weapons, but I believe fucoidan helps with cell apoptosis, which is something really darn important to cancer patients AND Alzheimer's patients (which are yin-yang diseases in many ways).
Cancer cells are cells that are replicating out of control; they have "forgotten" their normal life-cycle programming. Alzheimer's patients have cells that have "forgotten" to replicate. Anyway, that's my layman's understanding...remember, I am NOT a doctor, don't purport to be, and am NOT giving medical information or advice. I'm just a cancer patient who is still here, fourteen months after cancer metastasized so far throughout my body (see first post) that my body began shutting down and I was afraid if I went to sleep, I wouldn't wake up again.
I have been "talking" on-line to a couple of HS-mates who are familiar with one source for this amazing substance called fucoidan; the source I currently use has impressed doctors at Sloan-Kettering with its results. Anyone interested in trying fucoidan derived from brown seaweed to nourish the body in a way that will help fight diseases should investigate what other additives are in the product and ensure none are problematic for you. The source that works for me may not work for you, as you may have food allergies I don't have. Of course, I also have added brown seaweed ("limu") to my diet---I esp. like limu poke.
Fucoidan appears to help the immune system (my belief is that fucoidan and other such things are simply proper nutrition our body needs, and so of course the immune system functions like it's meant to when you give the body the nourishment it needs to function). Other disease-fighters out there, not just cancer patients, may want to investigate this important substance further.
Saturday, May 24, 2008
First off, I LOVE the whole-body vibration machine that I use. I heard a famous star mention the "Power Plate" brand, but the brand I use is "TurboSonic"--and that is the ONLY brand I can discuss knowledgeably with cancer patients dealing with metastasis to the bones. Other brands may use mechanical engineering to induce the whole-body vibration; TurboSonic is the only one I know that uses SOUND to induce the vibration.
Bones that have been compromised by cancer CANNOT withstand pressure or load-bearing (looking at it realistically from a structural-engineering standpoint) and should NOT be taxed in any way. What does this mean in real life? It means I pretty much have had to give up the idea of ever running again in my life, and forget lifting any weight (small children). I must avoid all weight on and any jarring of the bones. Good thing swimming is one of my favorite activities! But I can't always do that, esp. since I avoid chlorinated water (due to the cancer) and swim almost entirely in natural bodies of water (for the minerals and health benefits as well as avoidance of chemicals).
Using the TurboSonic machine, I am able to exercise my muscles--my whole body--in 10 minutes times. Whole-body vibration therapy has its roots in the space program; bone density and muscle loss have been medical issues faced by astronauts spending any amount of time in space, including in the low Earth orbit of the space station and space shuttles. We will face those same issues when space travel becomes available to us regular folk.
TurboSonic has different settings, and my bone doctor tested me on the very lowest, gentlest setting before I ever started the sessions I've been doing. There are settings that are TOO MUCH for patients who have bony metastasis or osteoporosis, so you must check out what is appropriate for you with someone who is authorized to ascertain that.
TurboSonic purports to do the following:
- Provide the benefits of a regular workout
- Encourage release of key hormones
- Stimulate bones, muscles, blood vessels and cells in a manner that promotes their rapid development and circulation
- Increase bone density
- Strengthen weakened lower back muscles
- Enhance explosive strength & fast twitch muscles
- Enhance pain reduction
- Accelerate weight loss
- Speed training recovery/enhance conventional training results
- Improve collagen production
- Reduce appearance of cellulite
- Tighten facial muscles
- Eliminate effects of stress
- Relieve tension and chronic pain in ankles, knees, lower back, and neck
- Relieve menopausal symptoms
- Increase serotonin and neurotrophine
- Decrease cortisol (the stress hormone)
- Rehabilitate injuries and ailments
- Degenerative disease conditions
- Pelvic instability
- Arthritis/rheumatism (I'd add fibromyalgia to this list)
- Excess body fat
What I personally (and those observing me) have noted and attribute to this regime is:
- my entire body is starting to show better tone in the muscles
- my spine is wa-a-ay noticeably stronger
- I stand straighter and taller and move like I did when I was 20 yr younger
- the lymphedema is my arm has noticeably reduced
- my blood work has been perfect--the actual MEDIAN of the ranges on virtually every data point
- the drug weight is coming off, even faster now that I'm coming off the drugs---THIRTEEN pounds in SEVEN weeks!
- the neuropathy is improving
- the burning brachial nerve pain has not returned despite coming off the drug that controls it
- fibromyalgia? what fibromyalgia??? NO MORE FIBROMYALGIA! (thanks to guaifenesin and this machine)
Friday, May 23, 2008
I think I'm going to enjoy a nice time this July checking out the Mt. Whitney "Zone"; but summitting Whitney itself will probably have to wait till '09. Esp. with this issue with my lungs anytime I am going uphill that slows my pace to a snail's crawl.
NOT that I'm not going to aim for the summit this July; I'm not going to limit myself! I'm just also not going to be stupid; I'll stop when my body tells me it's time to stop. I'm continuing with training on TurboSonic, but not getting to train in the local mountains at 7k+ elevations and having two months shaved off the training schedule hurts enough that I probably won't have the ability to summit this year.
Oh look, another goal to keep working toward---climbing Mt. Whitney in '09. What say you, guys?
Tuesday, May 20, 2008
I gave my hiking partners the choice of where to go, and they chose a hike I've been proposing to some hot springs. (I am purposely not naming them here to avoid overcrowding at the spot, but dedicated hikers will have no trouble identifying the location of which I write). Although it is not a lengthy trail, only ~2 mi, it IS a trail in desert heat---and the temperature was over 100 deg when we started out.
The trail passes through transition-type flora and fauna, as this area lies between the desert floor and the towering 8000+ ft mountains. Some wildflowers were still in evidence, and the yuccas were still in mostly full bloom. The highest altitude of our hike was ~4200 ft. A breeze kept us cool for most of the trail, but we quickly lost it when the trail began its descent into the canyon through which the creek cuts (the hot springs are along the creek).
Although I had plenty of water, and also had water with electrolytes and oxygen drops, the heat became more and more of an issue for me on the hike, particularly when we lost the breeze. I fought nausea every step of the way (I woke up nauseated that day), and thought for sure I would vomit several times (but fortunately didn't; after all the chemo I've done, I am so tired of vomiting!). I rested in every drop of shade we found along the way, tried to recover from oxygen debt every time it occurred (instead of pushing through it), and kept hydrating in an appropriate fashion. I knew once I got to the creek, cooling down would be no problem. But by the time we had almost reached the canyon floor, I was already having chills and goosebumps--NOT a good sign! This is a sign of heat stroke, which is VERY dangerous!!!
Luckily, I was able to make it the last few yards to the creek, which was deliciously cool without being the normal frigid melted snow waters that normally grace our local mountains, thanks to the hot springs draining into it. I eased in very slowly to prevent shocking the body, but the relief when I was finally able to wet the top of my head was INSTANTANEOUS. I had no further symptoms of heat problems; no headaches, etc.
Plenty of people were there already, and I had previously alerted my hiking party that this is a popular destination for both "natural" (read: nude) hikers as well as the to-be-expected skinny-dippers. So nobody in our party was surprised or offended by the nudity when we arrived. (I did try to keep all my pictures "G" rated, but one PG-rated one did sneak in.)
We swam in the cool creek for a bit before braving the hot springs. The first pool seems almost scorching after the hot hike (105+ deg is a normal temp for these springs). It is the perfect size to lie and soak in, just like a bathtub.
But I didn't stay in it very long at all, just a couple minutes, as I was worried about overheating again. The upper hot springs was JUST RIGHT in temp, and most of the people were gathered in it.
Occasionally someone (including us) would jump from the upper hot springs into the creek, which makes for a nice little "polar bear plunge" without quite the frigid temperatures normally involved.
And I'll tell you, my friends, not ALL beaches are by the ocean! This creek has a lovely beach on which to picnic and sun, which is exactly what we did. Soaking in the hot springs, drinking the mineral water, swimming, sunning, and picnicking--what a wonderful place and a wonderful way to spend the day!!!
Since we needed to be out by sunset and I am such a slow hiker these days, we left sometime after 5 pm. The climb out of the canyon to the saddle was hot and slow, but I had dunked in the creek before starting out and my shirt stayed damp until almost the top of the saddle.
Once we reached the saddle, we were in blissful shade for most of the hike out. I finally handed off my backpack on the very last hill, halfway up, when we were in the sun again. We made it back to the car as the sun was sinking, and it had completely set and night had fallen by the time we stopped for some well-deserved pizza.
We didn't get home until almost 10 at night. I jumped on the scale to find my weight was down 1.5 pounds from morning till then, pizza and all. So the hike definitely was a workout!
Unfortunately, the instant I had my hiking boots off and my feet up, the muscle cramping started---both feet as well as back muscles. OUCH!!! I got up and drank some more electrolytes, which then kept me up till after 1 am despite my fatigue. But it did help the cramping, and I was able to get a few hours sleep before the killer schedule began Monday morning.
I went to the voodoo dr, who determined that I am slightly dehydrated (despite my best efforts) and need to boost my potassium some. I used the TurboSonic machine to loosen my muscles up again, and then soaked my feet in a nice EB Cellular Cleanse footbath while doing AlphaStim on my earlobes. I felt nice and pampered after all that!
I was still so worn out that I fell asleep reading the newspaper Monday evening around 6 pm and slept almost straight through 12 hours. Wow!
That was truly a great spot; I can't wait to go there again (although I won't try it when it's over 100 deg unless I go early and stay late). Our thanks to everyone who shared the lovely spot with us--wasn't it wonderful? Hope you enjoy the pictures!
Tuesday, May 13, 2008
I woke up this morning unable to breathe again, as the allergy tablet had worn off. I asked for another one, but no one was willing to go search one out for me and I was too miserable to get up and search for myself. So I decided to just go back to sleep. I succeeded in doing it, too, and what a lovely treat that was!
I awakened a couple hours later to a package being thumped on my bed...my ultralightweight backpack is here! Woohoo! Woohoo!
The backpack itself has an internal frame made of proprietary space-age lightweight material. It is then cushioned with NASA's space foam. It weighs a mere 2 pounds.
And IT'S PURPLE!!!! Only color I cd order. Am I detecting a theme here?
I am anxious to try it out, but still have to adhere to the "no physical activity" policy until my lungs clear up. And since there's a fire burning between Mt. Baldy and Mt. Baden-Powell, I guess I'll have to behave for the sake of my lungs.
Monday, May 12, 2008
I went to see the oncologist today, and we were both totally excited and well-pleased to see I actually "passed" both tests, the bone scan and the CT scan!!! By "passed," we mean I am still markedly improved over last yr, the spot on the rib is now showing signs of healing, and the only cancer cells remaining are not even big enough to make tumors (largest spot (4 mm) is smaller than a BB (4.5 mm)). There are just a few teeny spots--cells, really--still in a couple spots on the bones and one in the lung. Pretty much what I've been living with since the mets got smacked down last year...I'm not in "remission," but the cancer hasn't been able to take off and thrive. What we'd un-PC-ly call a Mexican standoff.
Some teeny spots were new while some teeny spots from July's scans were gone, so it's just like my body did a little rearranging. It's clear the fight has been "ON" and the rounds are going to healing, not cancer. Always bear in mind I don't have to be completely cured, I just have to learn to live with this chronic defect until I get my 70+ yrs. NONE of the cancer is thriving anywhere, and my liver is CLEAR.
So we aren't even going to change my treatment (that's a big huge HALLELUJAH!!!!) right now; I do NOT have to go back on the toxic chemotherapies. I am so praising God for that one!!! I felt the spots were small enough that I cd continue to fight/overcome them using the methods I've been using, so I am really happy that my dr sees it that way, too.
He is sending me to a neurologist to check for spinal cord compression and to ascertain how much weight I can safely lift/carry. We agreed no more than 10# on my back, and I'm actually keeping it under 5#, until the neurologist checks me out thoroughly.
I'm still having a tough time breathing, but definitely improved over what it has been. After church yesterday, I cd go longer between allergy-tablet doses and was not as aggravated by symptoms. I will just stay inactive and indoors when it's nasty outside like this (windy and high pollen).
OK, I'm taking my miserable (but happy) behind to bed.
Friday, May 9, 2008
Well, I have one very smart dr, I'm here to tell you.
I cdn't breathe on Wed. when I went into town for the bone scan (and chauffeuring the little darlings everywhere on their routine). The wind was blowing here so badly, and the pollen count was really high. It's the kind of day where elderly and respiratory-compromised people have to stay inactive. Unfortunately, I had joined the group.
I coughed and choked and hacked, and have rattle-y congestion deep in my chest. I have literally gone from climbing Saddleback Butte and flying back East to being completely flat on my back in bed, miserable as can be. I've NEVER had an allergy reaction like this, so it was really apparent to me that my lungs are indeed compromised. (The lungs starting to burn again was one of the symptoms I reported to my dr on Tuesday).
I had called my oncology nurse and had a plan of action that worked pretty well. We got some benedryl in me, and later some sudafed, and I was not struggling quite so much to breathe. I even got some sleep...eventually and fitfully. But I still had DH call on Thurs and tell the nurse to let the dr know we probably need to find out what's going on with the lungs (metastasis-wise) before my Tues appt to follow up the bone scan. They apparently stat'd the order, and I was at the hospital outpatient imaging center by Thursday afternoon.
I was still miserable, having a tough time breathing and a POUNDING headache. Also, I was very lightheaded. I don't know how much was from the allergies, how much was from the OTC drugs, how much was from lack of oxygen, how much was from possible mets to the lungs. I just knew this is NOT GOOD.
To top it all off, the poor technician had an AWFUL time trying to get the IV into the ONE vein we can use...it was simply a vicious assault to get a needle in me (and not due to any incompetence on her part, or I wd've made them get someone else). I came up off the chair at least twice, and I'm pretty good at needles these days, so that's saying A LOT.
They got me in the ct scan machine for a scan of my chest. I asked them when the last one we did was; it was last year but I can't remember whether it was March (when mets was everywhere) or July (when the mets had been knocked down). So I was all lined up in the machine to do comparative scans. We did a couple pictures, but then, when it was time to put the contrast in the IV, they stopped the test and said they had to look for something different than just metastasis -- they were looking for a pulmonary embolism (PE)!
Apparently, the symptoms I presented with are also indicative of PE, and I *had* just flown on a plane (which can cause Deep Vein Thrombosis, so you can throw a clot). Since the symptoms had come on so suddenly and just days after the flight, well....like I said, I have one very smart dr.
So they had to take me back to the technician again to remove THAT IV and put in another HUGE diameter one instead. Yep, another vicious assault (and these last a long time, too...it took almost 30 minutes to get the first one in), worse than the previous one. You cannot believe how that arm/that vein looks today! A big huge GOOSE EGG.
So finally got the IV in, had to wait for the machine again (previous wait was almost an hour)...had to wait until the radiologist read it and called upstairs to the dr's office (which was now closed but had a nurse standing by for the results) before they wd release me to go home. I didn't think it was a PE, but only because I don't think I cd survive a PE. So I just read magazines (finished two) until they confirmed for me that it wasn't a PE and I cd go home around 6:30 in the evening.
But the dr's nurse called at 9:00 this morning, and wants me there on Mon morning (not Tuesday afternoon, as already scheduled). He is off on Fridays, but she told me that the dr said if I'm still struggling to breathe, to come in and see one of the other doctors. I'm doing better; we are controlling the allergies with sudafed, which I believe are what was making it so hard to breathe (given my already compromised lungs).
So I think we are just going to be moving on with another treatment approach to the metastasis, as I believe the scans are showing lesions in both the bones and the lungs.
And so we'll just keep moving on in this 21st C, where 4th-stage cancer is a chronic condition that we are doing our best to manage until a cure comes along. i'm glad i was able to spot the symptoms, given that i had a great PET scan result just 2.5 months ago. By staying on top of it, I will be able to keep beating it back into submission until my body can heal once and for all.
So I went on Tuesday and 'fessed up to what I've been up to -- hiking and now attempting carrying weight on my back. The look on the dr's face said it all: What in the heck am I thinking?
So I learned a lot more about spinal cord compression, and also just how easily it is to break my spine now that it's been compromised by the metastasis to the bones. Given that one of my friends, who gets infused with methyltrexate, broke 3 vertebrae in her back just moving her couch, I figured I better pay close attn to what the dr is trying to tell me.
So if I continue to try hiking and even attempt overnight hikes like San Jacinto or Whitney, I best not stumble AT ALL, as I cannot risk breaking any bones or having any kind of medical emergency. And I better not carry any weight on my back!
My backpack (already ordered and in transit) and the sleeping bag I'm looking at have a combined weight of under 5 pounds. I stuck my purse on the scale yesterday and found it weighs 4 pounds, and I am routinely carrying it on my back/shoulders. But it's still just too risky--and not the kind of risk I like to take.
I also had 4 or more symptoms return, so I've stopped doing anything for the moment and am just focusing on the oncology. The doctor and I agreed to do a bone scan and see what it shows, as one of my symptoms shrieks of metastasis to the spine again, before I even THINK about trying to carry anything again.
So if for some reason I don't get to use the brand new backpack I bought, I bet it will make a good fit for my tweenage son, who is starting to get seriously into scouting now. But I'm still hoping to pull off carrying at least 5 pounds and using the pack myself to see some backcountry!
It's hard to make the best decisions, balancing the "living" with the "with cancer" part. I need to live, but most of all I need to raise my children to adulthood. So for now, I am waiting on test results and will just take it (somewhat) easy. I was hoping to hike this weekend, but I'll just focus on beating back the cancer some more. I'm sure that's the better choice.
Thursday, May 8, 2008
The voodoo doctor believes it to be an issue with torqueing the knee, so either I need to try putting orthotics in my hiking boots (in case it's an issue with how I'm stepping) or get a knee brace (if it's an issue with the climbing).
Luckily, a friend my age just wrote about a knee brace that has been very helpful to her in continuing her physical activities (which make mine look tame, I assure you). So I will try both the orthotics and the knee brace and see if the problem resolves.