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Saturday, December 21, 2013

Advent

We are in the season of Advent -- a time for waiting and hoping. I have been doing a lot of that lately. I have also been "doing" lots of new stuff: changing my diet, adapting to the mistletoe injections, getting used to lots of add-on supplements, as well as the estrogen-blocker med. Change is hard when you're old. There are so many wonderful things I used to enjoy and now cannot: pizza and beer, wine and cheese, cookie dough, funnel cakes at county fairs. And it is difficult to go to social affairs. What to eat? Ah, a plate of veggies….hooray!  But wait, the dip is sour-cream based. Bummer. Oh well, we learn to eat such things "naked." When Nick is in the kitchen heating up a roll for a sandwich, the whole house smells like warm bread. It takes a lot of self-talk to keep me strapped in and squelching the urge to run downstairs and attack that bread!

But all of these adjustments are so very minor compared to the rewards. The waiting and hoping -- but most of all, the "doing" -- are paying off. My last visit to the oncologist (Dec. 17) revealed a weight loss of 7 pounds. And my blood work showed an improvement in one of the cancer marker tests. The doctor confirms that the tumor is definitely not getting bigger -- and may, in fact, be reducing in size. These things are difficult to gauge, especially when weight loss has changed the "domain" of the lump somewhat. So we will re-visit the situation in 6 weeks.

Best news of the month: I fired my surgeon. You may remember in previous posts my angst about this idiot who enjoyed playing word games with me and filling me with fear of death -- or worse, radiation and chemo? Well, he is not my surgeon any longer. Dr. Burrell assured me there are many others who she felt confident would not rub me the wrong way. We also both agreed that, whatever I am doing now is working. So for the time being, no surgery is in sight. Down the road, an MRI will be ordered to re-evaluate. Dr. Burrell said to me, "Whatever it is you are doing, it seems to be working. So keep doing it." Woohoo!

So we wait and we hope. For the Advent of what? A Christ child, a new year, a brand new tomorrow. I wish all of you joy in this season of waiting and anticipation.

Friday, November 29, 2013

Gratitude

On this Black Friday (who on earth makes up the names for these annual markers?), the day after Thanksgiving 2013, I should like to offer gratitude:

To my family -- my wonderful son and daughter who are supporting me as I travel this road of cancer and recovery. To cousins and brothers and sisters (in-law) and nieces who call to check on me or send messages of love and support. Then there are the out-laws…. the wonderful Edmonds family -- my most incredible son-in-law Chip, Walt & Peggy (whose love is unconditional and so often expressed). Thank you for being my family.

To friends, neighbors, piano families, church friends who are always inquiring, sending cards, flowers, emails. Your love and concern are so very much appreciated. Words have power. Thoughts have healing energy.

I received a unique gift from my ole college roomie Carol: a "cairn"of tiny stones that stack one upon the other. She uses such stones, neatly stacked, as a reminder to keep things in balance. If the stones fall over, you just rebuild them. She thought that such a ritual was very Druid-like and would provide a good complement to the mistletoe. Brilliant.

And I would like to share some very wise words from my friend Bill J.
I find them to be true and comforting:
        Cancer is so limiting….
        It cannot cripple Love
        It cannot shatter Hope
        It cannot corrode Faith
        It cannot destroy Peace
        It cannot shatter Confidence
        It cannot kill Friendship
        It cannot suppress Memories
        It cannot silence Courage
        It cannot invade the Soul
        It cannot steal eternal Life
        It cannot conquer the Spirit

There is even an upside to this cancer thing. Since settling into the mistletoe therapy and adding all of the lifestyle changes mandated by Dr. Grundmann (eating gluten-free, dairy-free, sugar-free, lots of raw veggies and fruits, add-on enzymes and herbs), my energy level is super high, my immune system is pumped! I am losing weight (in a good way!) and sleeping soundly (thank you, melatonin). Ironically, I feel better now than before my diagnosis.

And so…. this Thanksgiving, I am finding much to be thankful for. I hope you are, too.


Sunday, November 17, 2013

Comfort IN, Dump OUT

The purpose of my blog is to let those who care about me know about my situation and to be informed of how I am faring in my treatment. Comments on my blog are certainly welcomed. But I do not wish to debate anyone about the "road I am traveling." It is my road, no one else's. I do not need to defend what I am doing. And I don't intend to.

Below is a very interesting article a dear friend of mine recently sent me. I think we can all learn a lot from it.

How not to say the wrong thing

At the moment, I am the one in the center of the circle. It's not a pleasant place to be. I am allowed to dump. Thanks to my friend, Cindi, for always giving comfort and the best of advice. She is my "shoulder" to cry on (that's sort of an inside joke!)

Tuesday, November 12, 2013

Daughters are Gifts from Heaven

I just have to toot a very loud horn for my amazing daughter, Erin.

She "gets" me.

When I am ranting, she just lets  me rant. She doesn't always agree with me, but she lets me be who I am and just allows it. In all of this cancer madness, there is a bit of role reversal taking place. I have become the needy child and she has become the ever-so-patient and tolerant parent. When she calls and I pick up the phone, she can tell just from the sound of my "hello" if I am in a bad place or a good place. And if I am in a bad place, that doesn't last long. Her words become my balm.

Even though she has a very busy life of her own as wife of an amazing guy (Ah, Chip! He could take up another blog post all by himself) and the mother of two gorgeous and very active little boys, she takes the time to just "be" with me, to just listen to me. And she is a great devil's advocate -- not afraid to pull me away from being overly critical or irrational in my thinking. She has pulled me off of a few emotional crisis ledges more than once, that's for sure.

Twice in the past two months, she has traveled down from her home in PA to be at my side for doc visits. It's so helpful to have an extra set of ears to hear what is said. Everyone needs an advocate in a journey of illness. She is more than an advocate -- she is my rock.

Thank you, Erin, for being that rock. And thank you, Chip, for helping keep the home fires burning so she can come down and be at my side. What a lucky Mommy am I.

G is for Grundmann

That's the name of my mistletoe doc in Baltimore. It is also the letter for the dose of mistletoe that finally created the expected red skin reaction at the injection site. Very ANNOYING skin reaction, I might add. Plenty itchy.... and somewhat swollen. And it turns out a full G dose is way too much, so I am now experimenting with a quarter of a dose.... then saving the rest in the needle in the fridge for subsequent quarter doses. Hope Nick doesn't feed them to the cat. 

On November 7, I trekked up to Baltimore to visit Dr. Grundmann. Now that we know that my tumor is estrogen-fed and that the oncologist wants to treat with an estrogen-blocker, it is time to get Dr. G's take on the situation. She knows that I only want to throw one-ball-at-a-time (mistletoe) at the tumor target. But she is also a really good MD and understands the ins and outs of estrogen-blocking big pharma meds. She recommends that we throw both balls at the tumor: mistletoe and an estrogen blocker. Problem is.... she needs to know which blocker the oncologist recommends. Based on that info, she will work to alleviate any side effects. I feel that I need to go along with this advice. It makes  sense. And luckily, this hormone-blocking med is not as debilitating as taking full cyto-toxic chemo. 

So that very day (November 7), I called my oncologist and told her that Dr. Grundmann was "on board" with the estrogen blocker. Dr. Burrell (oncologist) seemed very pleased by this news, of course, and recommended Arimidex (known in the pharma world as Anastrozole). Side effects include potential bone loss. 

I started on the Anastrozole the next day (November 8). And after spending a wonderful weekend in PA celebrating my grandson Jacob's 7th birthday, on Monday I called Dr. Grundmann to let her know what drug I was taking. She called me back within hours, having done extensive research to determine what I should use to supplement my regimen to avoid bone loss. This woman is a stickler for details. Unlike my western docs, who tell me very little unless I specifically ask, this doctor spews out so much information, I can hardly keep up. So she is sending me a care package of supplements to help ward off the "bad bone Gremlins." Ah.... another G word. 

And here's another: GRATITUDE.....for every one of you who have sent words of support and love, and for these two pretty cool lady docs whom, I am finding, are both open to working with solutions from standard and not-so-standard avenues of medical care. Maybe we are actually on our way to trail-blazing a "road more frequently traveled" for the future of medicine. 

Thursday, October 31, 2013

Cause and Effect

Forgot to mention the weird location of this tumor. We are calling it breast cancer, but it has appeared in  an atypical location (according to oncologist). It is just where the breast meets the chest wall. I have a theory about how this tumor developed where it did.

About three years ago, I purchased a Lazy Boy recliner. Up to that point, I never used my laptop computer on my lap. It was always on a table-top stand. But after I got that chair, my habits changed. I placed the computer on my lap, on top of a huge pillow (not a very good insulator). But when I was reclined in the chair, the lower right corner of the laptop  slid into that comfy crevice just beneath my right breast, in the exact location where the tumor developed. My habits were consistent. I would check my email in that chair, I would download videos and documents. I often fell asleep -- and upon awakening, I would notice that the computer was actually very hot next to that spot. I would often say to myself, "Gee, that can't be good." But did I stop this behavior? No. How sad to think that the EMF radiation from my computer might have contributed to the growth of this cancer.

This is only a theory, of course.... can't be proven. But when dots are connected, the evidence is pretty strong. Perhaps many of you have seen the youtube video of the young woman who developed a breast tumor in the exact location where she habitually stored her cell phone, tucked inside her bra.
She has become a poster child for this problem of EMF exposure. She now hands out pamphlets and tells everyone she can about the dangers of cell phone exposure in close proximity to our very vulnerable living cells. The following link doesn't depict the same young woman I saw, but the case is  similar:



There is tons of info on the internet about the dangers of EMF radiation -- from cell phones, laptops, Smart Meters, cell phone towers, wi-fi. Please learn from those of us who have been adversely affected.  Limit your exposure to the "dirty electric soup" that we live in. Please.

One Ball at a Time, Please


So in my previous post, things were moving pretty damn fast, bits of info were flying around in my head and my sub-conscious created a weird vision of throwing balls (cancer treatments) at a target (tumor) and being successful! What a great dream, ay? Yeah, but which ball is making the difference? The scientist in me is saying, Way too many variables here. Let's narrow it down.

Now here's where I lose a lot of people. Well, why would you care which ball did the trick? (this from the IPT guy). Are you sure you're a musician and not a researcher? (this from the oncologist). But what if it DOESN'T work? What if you do hit that brick wall? (surgeon and well-meaning loved ones). 

Yes, I guess you could say I am taking somewhat of a risk. If all three of these therapies work, why not try all of them at once? You have to understand. I am so excited to be on a therapy that doesn't come from a test-tube, isn't lining the pockets of some big pharmaceutical company -- it's something that grows on God's green earth. It's a strange little plant that the Druids, for centuries, have revered as having healing qualities. I just WANT TO KNOW if it works. 

When I next meet with Dr. Grundmann (Nov. 7), I am going to discuss a reasonable time-table for the mistletoe to do its work. I am going to watch the tumor carefully. I can feel it; I will know if it is increasing in size. My surgeon (who is NOT happy with my decision to forego the Tamoxifen "for the time being") wants to see me in January to determine if the tumor is stagnant, growing, or diminishing in size. I'm cool with that. Even patients on Tamoxifen usually do not see any reduction in tumor size for 6 months to a year! 

What about the IPT therapy? It's still an option. Now that I know the tumor is estrogen-driven, I am putting it in the Plan C box. So, Plan A is mistletoe, Plan B is MT combined with Tamoxifen, Plan C is adding IPT. Stay tuned. I will update as I know more.

Thank you, everyone, for prayers and well-wishes. I apologize for being so cryptic about disclosing info about my situation, but as you can see, situations have been changing daily. This blog allows me to keep everyone informed without repeating myself myself myself. 

I am new at this blogging thing, but I think you can comment, if you like. 

Too much too fast

Ok, so by now.... if you've followed the string of blogs, you know that I am taking mistletoe.
I'm taking action. This makes me happy. Dr. Grundmann tells me about yet another amazing place in northern Virginia that offers another therapy, IPT (insulin-potentiated therapy), among other treatments.  IPT is quite fascinating as a concept: it is a low-dose form of chemo (10%, WAY less than the allopaths give) and it is injected into the patient using insulin as an adjuvant. The patient arrives at the clinic in a fasting state, so the cells of the body are hungry -- but the cancer cells are 10X-20X hungrier than normal cells. So they gobble up the chemo using insulin as the trojan horse  transport system. After this injection, the patient goes through a colon hydrotherapy detox to flush the normal cells of the body of the chemo toxin. Dr. Grundmann thought this was something I should look into.

So I called them right after starting mistletoe, talked to them about the therapy and made an appointment to go and have an initial interview. 

Then I received results of my biopsy that said that my cancer was hormone-driven. The surgeon said that I would need to have a hormone-blocking form of therapy (yes, in a way, chemo, but not as debilitating as standard cyto-toxin chemo that kills every cell in the body). The standard is either Tamoxifen or Arimidex. My head was now swimming with many ideas: "Let's see, I'm now on mistletoe, which is supposed to shrink the tumor and BUILD my immune system. But I could add to that IPT therapy, which is actually a form of chemo. But now my surgeon says I don't need standard chemo right now, but Tamoxifen." 

What to do? It was all swirling around in my head. Then I actually had a dream. Yup, a vision of sorts. In the dream, I had a handful of balls and I was throwing them, helter-skelter, at a target. And the target was "going off," making kind of a popping noise. What did this mean? 

I call this my Balls at the Target moment. It occurred to me that, if I started throwing too many therapies at the "target" (the tumor) at once, and if the tumor started to shrink, I would never know: which ball was it that did the trick? Which one was it? The mistletoe? The Tamoxifen? The 10% chemo via IPT? I had to know. Next blog: One Ball at a Time

Starting on Mistletoe


So while the wheels of the AMA machine slowly cranked out tests, biopsies, and doc appointments, I took a side trip to Baltimore to see a new Doc, Ina Grundmann. She is a colleague of Dr. Hinderberger, the Swiss doc who treated Ivelisse Page (see the link to Ivelisse's interview in my previous post, "The DETOUR.") To my amazement, I injected myself with my first dose of mistletoe on my first visit. I was off and running. 

To those who may be curious about mistletoe therapy, here is a very well done video (only about 20 minutes in length) made by a German man and his father.
Also, there is a clinic in Denmark that has conducted some studies on the therapy.

As of the writing of this blog, I have taken 8 doses (injections sub-cutaneously), every other day. The dosage is building up to a level where I will receive a skin reaction. That will determine the dosage that my body needs to work on attacking the cancer. There are side effects. After the first dose, I immediately felt a lethargy, a drowsiness. A bit hard to shake, but am getting used to it. Took some amazing deep-sleep afternoon naps, very rare for me. On dose #8, two days ago, I experienced a slight fever. Evidently, this is expected and normal and a good sign that "now we're cookin'!"

Because I was running a fever yesterday (Oct. 30), the day I saw my surgeon, I was not "on my game." He pretty much ran over me verbally. And because I didn't feel very well, I didn't cope well. Left his office in tears.

But by the time piano students were rolling in the door, I was better. Music always helps!

The DETOUR


In a previous post, I mentioned that I was going to find a DETOUR to get around that metaphoric speed bump and brick wall that my surgeon created to scare me into AMA compliance. I have been researching cancer (and other disease) cures for years. There is always something new to learn. The greatest lesson I have learned is that we in this country are very far behind the rest of the globe in cancer research. It isn't that we aren't smart enough or don't care. It's that we are OWNED by big pharma. They work very closely with the FDA to shut down doctors, clinics, and researchers who work with alternative therapies. There is Nicholas Gonzalez in New York, Stanislaus Burzyinski in Houston, amazing clinics in Reno and Tijuana. But, as far as I knew, there was nothing around the DC area. Or so I thought.....

Prior to my diagnosis, some time last summer, I found an interesting website created by a young guy who cured himself of colon cancer, after having surgery and rejecting chemo. One day, coincidentally right after I was diagnosed with cancer, he posted an interview with a young woman from Baltimore who had cured her cancer using mistletoe therapy. 

Mistletoe? Huh? You mean that plant that we hang in doorways at Christmas time to lure people into giving us a smack on the lips? Now, I have seen a lot of youtube videos and I have read a lot of testimonials. Some are just absolutely amazing. They seem miraculous. And I know that for some, these therapies don't work... and yes, some folks do hit the brick wall. I am looking for the detour to take the LONG road around that brick wall. Some people follow the chemo/radiation route and they still end up hitting the brick wall. We are all going to hit that brick wall eventually. For me, it is the route we take to get to that brick wall that is important. It's all about the journey, not the destination. I do not want to destroy my immune system, lose my appetite, puke up what I do manage to put into my belly, lose my hair, turn a dozen shades of gray. That's the speed bump my surgeon tried to sell me. Ain't takin' that road.

So.... rather than head off to Tijuana or Houston, I decided to give this mistletoe thing a shot. 
This will be my "road less traveled." 

OnCOLogists, SURGeons, and BEARS, oh MY!!

I have always said to myself, If I ever get a cancer diagnosis, I will not take the standard route of the three C's: CUT (surgery), COOK (radiation), CHEMO. I am doing my best to stick to that promise made to myself, but bucking the system ain't easy. And in doing further research about my particular cancer, I have come to the realization that the CUT part is perhaps a wise road to take.

So how does one even GET a "proper" diagnosis? Ya gotta have tests, folks. Lots of them. MRI's, PT scans, CT scans, blood work, biopsies. And you have to meet with the allopaths, the docs who attended the school of three C's. It's all they know. Unfortunately, in this country, one must go through the AMA doors to receive all of the tests that are necessary to do a proper diagnosis. I have been doing that. It's been tedious and agonizing.

I must say that I did get pretty lucky in the oncologist department. The doc who is treating me, although quite skeptical of my outside-of-the-box thinking, is willing to stick with me and help me monitor my progress. I like her.

Not so the surgeon. I butted heads with him on the first go-round. I'm sure my chart is full of capitalized letters in red ink warning him.... "yup, this is that crazy lady who believes in all of that whacko stuff." He actually uses such language with me. He warns me that I am going to die. He talks about speed bumps (chemo) on the way to the brick wall (death). Evidently, in his world, those are the only two options (speed bumps and brick walls). Not in my world. I'm taking a DETOUR. (separate post)

Ok, so he's still willing (my gut says reluctantly) to be my surgeon. Not sure if I am willing to lie on a cold slab with him hovering over me with a scalpel. Anyone out there know of a surgeon who will work WITH me and not AGAINST me? I am open for ideas. Anyway, in the meantime, he is willing to perform a surgical procedure to remove the breast ... or lump... or in my case, a double mastectomy (yup, I will probably pull an "Angelina Jolie"). But not right away. He wants to shrink the tumor first. This could take months.


The Diagnosis

Well, believe it or not, my journey along this road began on September 11  (can you believe that?) of 2013. What I thought was a lipoma just beneath my right breast was annoying me so I went to a dermatologist to have it excised. Instead he biopsied it and found cancer cells. So began the journey down the labyrinth of western medicine.

For a very long time, I have been moving away from standard allopathic, AMA-trained medicine. I have many books about alternative therapies (for various diseases, including cancer). I have tried to apply these therapies to my life. As I create posts on this blog, I may be adding a link or two for those who may be curious about "outside of the box" thinking in health care. These are not meant to preach, only to inform the curious.

So -- yes, I have breast cancer. Wow, just in time for all those pink ribbons in October. Knowing that I was now about to hop onto that train of propaganda turned my stomach

Here's a clip from Pink Ribbons, Inc. Youtube has removed the full length film. Please seek it out, it's quite enlightening.


Did you know that Astra Zeneca, the company that manufactures the breast cancer therapy called Tamoxifen was behind the whole pink ribbon campaign? It's all about big buck-os, people.