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.
Betsy's Road Less Traveled
Saturday, December 21, 2013
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.
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!)
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.
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.
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.
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