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.

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!)

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. 

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