Random Sunday Thought (9/25/2011)

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Why can I never remember how to spell
M-E-T-A-S-T-A-T-I-C;
M-E-T-A-S-T-I-S-I-S; and
M-E-T-A-S-T-A-S-E-S and all variations thereof?
Why can I never pronounce these words without spewing spittle?
My fingers just can't type out the words comfortably.
They always hesitate on the key board while my brain stutters
...................M-E-T-E...<oops>...M-E-T-A-T...<oy>...M-E-T-A-S-T-I...<#%&!!!!!!>
The syllables trip over, around, and get stuck under my tongue.
And the letters just never look right juxtaposed together.
METS tourettes, I suppose.

"What is important to you"?

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I have been hearing...and listening...to a great deal of frustration from friends and family. My cancer journey is confusing and scary for them, understandably. Equally understandable is their frustration and confusion as to my choices in treatment and management of what has now evolved into a chronic disease. I am trying to address each of those I love and care about individually. To reassure. To help them, if not understand, to at least accept. Below is a compilation of several letters that I have written to some of my loved ones. I share them here, first, because this is where I process my cancer journey. Second, because I hope that through the venue of my blog understanding and/or acceptance will come. I have to hope. WARNING: Content May Contain Concepts of Emotional Sappiness.

Dear Loved One:

I am going to start this letter with the single most important message I wish for you to take away, and that is that I love you!

Also, you need to know that you are important to me, and I am listening very closely to your concerns. I know that you are worried. I feel deeply and appreciate your concerns...truly. 

   

I know that the prevalence of pink & pretty media coverage regarding breast cancer makes it seem that great leaps and bounds in treatment options are available. I also know, from experience, that when Susan B. Komen and their ilk speak about "cures" and "awareness" they are speaking only of early stage breast cancer. That is, breast cancer that is confined to the mammary glands, and which can be "curable" but only to a certain extent. Susan G. Komen is not about advanced stage breast cancer.

My cancer was initially discovered when it was already late-stage; and is of an infiltrating / invasive nature. Remember, this was despite years of mammos misidentifying the tumor growth solely as fibrous breast tissue. When breast cancer has metastasized, i.e., moved out of the mammaries, treatment options are few and most are longshots in achieving a positive prognosis. Regardless, I have not been sitting idly. Nor, should you presume that I am acquiescing, giving in, admitting defeat, etc. to a chronic disease.

Yes, it is true that the MD community is a bit pessimistic about my situation - save, interestingly, my oncologist who is excitedly on-board with my current protocol. Well, maybe not excited per se, but at least supportive. You must trust me, I have researched and continue to research extensively my current treatment plan. The MD community (save for my oncologist) would like to go "full guns" and "aggressive beyond measure" (these words from the radiation onc). And, according to same radiation onc, going "full guns" will only give me a 20% chance at a 5 year survival. You must remember: there is a vast difference between survival and living.  

The surgical onc clearly does not want to do the surgical "full guns" and "aggressive beyond measure" surgery -- a full axillary nodal dissection. Why?  Because  it is "messy" trying to avoid all the clusters of nerves, blood vessels, and arteries. And, she acknowledges that there is no difference in the 5 year morbidity with women who have had a full axillary nodal dissection, and those who don't. She does, however, give me a 25-30% likelihood of long term nerve damage.

I cannot articulate the appreciation I feel for you own efforts in researching treatment alternatives for me. Your own stubbornness and deep caring are two of your endearing qualities. I also appreciate the emotional difficulty you are having in sharing your research findings with me. Nothing about cancer is easy. Unfortunately, your research brought nothing new or surprising. I was aware of the challenges with my prognosis. Rightly or wrongly, I did not feel that I should dump all of the "lovely" news on you in one dose. It wouldn't be fair to you or me. Why? Because I am still coming to terms with what the medical community is saying to me. I am not prepared, yet, to be a strong shoulder for you while I answer your questions. Selfish, yes. And unapologetically so. I am getting good at being selfish these days. 

As I shared with you, the radiation oncologist here in Arizona -- who, btw is touted as the "go-to radio-onc" (imagine me raising an eyebrow of doubt) was not as forthcoming as the one you communicated with. Radio onc's 20% chance of a 5 year survival was predicated on me first going through the surgical "debulking," followed by an aggressive protocol of  "clean up" with broad-based radiation of the neck, shoulders, axillary and chest wall.

I asked radio-onc how long after such intense radiation exposure would my body begin to show signs of damage to my heart and lungs (predictably leading to heart and pulmonary failure). She would not answer.

My individual situation...my reality that I have to live with, is that I must continue with life-as-is. I am fortunate that my work is something that stirs my soul, because my working is a direct and palpable benefit to my family. Family is what is important to me. Indeed my kids come first. I will never be selfish when it comes to their immediate and long term futures. Each and every decision that I have made over the last 25 years has been about family and building a life and future for my children.

I will also not allow this chronic illness to turn my family into another "recession statistic" -- funneling funds into a medical industry that holds no hope for me. I secured Husband's agreement on that one. What that means is that I will not hurt my family financially while chasing medical pipe dreams. The decisions and treatment protocols I have decided upon (with, again, the surprising support of my medical onc) are to help me manage my chronic illness and still have a quality of life with my children, now. 

I can honestly say, I am feeling better this week - week 3 of my protocol. I do "suffer" immense nausea and fatigue after the high dose vitamin c IVs, but it passes within an hour or two with the help of lime slushies.

You will have to trust me. Your trusting me is important.
The health (emotional and physical) of my children are important to me.
Making sure my children have a competitive edge and a fighting chance in this world that seems like it is being turned on its head is important to me.
Being strong for my children, while I can and when they need me now, is important to me.

Dear-heart, we are all going to die at some point, no? That is the life-cycle. It is also very possible that the cancer may not be what kills me. It is as likely that a reckless driver on the interstate, or the space debris currently falling to earth is is what causes my death. Old age may be what finally takes me. The point is, none of us know with any certainty how we will die...only that we will.  Because of a bizarre turn of events, I am "fortunate" to have (potentially) prophetic knowledge of my demise. Embracing my mortality on a daily basis does color my daily responses and perceptions. 

What is important to me is that the time I am here is spent with meaning and with as many quality moments with those that I love. Giving up sitting on the sidelines at my son's soccer practice, so I can chase a possible treatment far away from him, pales in comparison. Attending my son's concerts; making his lunch in the morning while quizzing him on science vocab or math problems; reading with him at night snuggled in his bed together -- I would never make a choice that would steal those moments away from me, now. These moments cannot be recovered, and are real now. The future, under the best of circumstances is unpredictable. 

Not being able to have my girls reach out and share with  me all of their daily joys and sorrows (18x a day -- really!) would decimate me emotionally. Being a sounding board for the volatility of their developing adult-hoods is the reward of parenthood. My girls are growing up, now.  And there is Husband. He has been my BFF and "work in progress" for 25 years now - and I have not finished with him as yet! He is not getting out of this marriage that easily, especially when he is yet to be housebroken.

Missing all of this while I am here in the moment feeling strong and relatively healthy, well, that would kill my spirit long before my body would crumble.

~TC

Another "Lens" in Which to View the Dreaded "PINKTOBERFEST"

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By: Dawn

Maybe I should make this entry pink, pink lettering on a pink background, totally unreadable, just a sea of pink. Why would I want to put all this effort into writing a blog entry just to have it unreadable? Why do people keep making breast cancer seem like a happy, fun, feminine, cool, trendy disease?

The facts aren’t that happy. Sure, it’s not the death sentence other forms of cancer are. Let’s face it, some cancers are quick, brutal, and rapidly deadly. For those cancers, the question isn’t “if” but “when.” I have a friend who has a specific type of cancer that has a 0% five year survival rate. ZERO percent. I don’t know what the one year survival rate is, but it’s not great. Another of my friends was told she’d live 12-18 months. She fought hard. She battled mightily. She lasted 15 months if I count correctly. Compared to those types of cancer, sure, breast cancer rocks.

But do all of those people who are so happily pink, festooned with ribbons and feather boas and running and dancing and doing all those fun things for a cure really aware of how great breast cancer is? How survivable it is? How much progress has been made?

For starters, when we talk about “surviving” with breast cancer, we speak of surviving five years. The term is “the five year survival rate.”

Pardon me for not being too chipper about that. I’m coming up on my second cancerversary.

If a woman happens to be Hispanic, which I am not, she’s more likely than other women to get aggressive breast cancers and die from breast cancer . Were you aware of that?

I’ve heard people, endurers as well as the non-effected, say, “At least the tumor is estrogen (or progesterone) receptive. There’s a pill for that.” Yes, indeed there is. And those tumors tend to grow more slowly. See how aware we all are? Yet, not 100% of all those hormone receptive tumors respond to medication . In fact, for people who are progesterone positive, under 20% respond to hormone therapy. Oops! Wasn’t aware of that fact.

Many people are also aware that another type of cancer, the type I had, is particularly aggressive. It’s called HER-2+ breast cancer. But joy of joys! Herceptin cures it! And if it does come back, “you just do herceptin treatments for the rest of your life.” Well, that’s probably correct. As long as the herceptin continues to work. Of course, Tykerb is also an option. But sometimes that doesn’t work, either. And, the woman dies.

We are also all aware that breast cancer is curable. And that’s true. To an extent. Most women don’t die from the cancer in their breasts. They die from the cancer that has spread to other places, their brains, their livers, their lungs, their bones. If the cancer just stayed in our breasts, we’d be fine. Cut it out, chop ‘em off, radiate ‘em. End of story. However, that’s not how breast cancer works. There’s never, ever a guarantee that even the smallest spot of cancer hasn’t sent cells out into the blood stream or lymph system, so many (most) women have cells, lurking, waiting to come to life. Yippee.

Many of us are aware that there are things we can do to “prevent” breast cancer. No, not really. Other than cutting off breast buds at birth, there really isn’t anything that “prevents” breast cancer. There certainly are ways women can reduce their risks, their life time, risks of breast cancer. These include staying within five pounds of a healthy teenage weight, exercising an hour a day, eating a mostly plant-based diet, breast feeding, having babies earlier rather than later. These are not “preventative” as we’d like to think. Breastfeeding is not the same as wearing a condom to prevent pregnancy. A condom is, what, 99% reliable although users of them tend to be less so? Breastfeeding your baby for a year, two years, a total of 13 years spread over several children, does nothing more than reduce one person’s life time risk of getting breast cancer. It’s not the same as, say, not smoking to prevent lung cancer. Being thin, fit, young, and nursing does not mean one doesn’t have to still screen and hope for the best. Many women aren’t aware of that. When I was diagnosed, some ardent breast feeding person who was touting breastfeeding as “preventative” had the gall to ask me if I had a family history, as if…whatever. She said she was counting on nursing to “protect” her. Idiot. Simple stupidity. Further proof that the USA sucks at math and mathematical reasoning.

Let’s talk about long term survival. We are aware that a lot of women survive for years. Women are typically over 60 when they are diagnosed. Let’s face it, when you are in your late 60s or your 70s or older, “long term” takes on a whole different meaning than when you are in your 20s or 30s or 40s.

And none of this takes into account the negative effects of cancer treatment on a person’s general health. For starters, cancer treatment can lead to new cancers. We are all aware that radiation can cause cancer. Cancer treatment often includes radiation. There’s a double-edged sword. Better yet, there’s the chance that treatment will cause heart, liver, or kidney damage. The Tykerb I take now is black box labeled for liver damage, “sometimes fatal.” Nothing like killing yourself to stay alive.

Herceptin (and Tykerb) can also cause heart damage. My radiation treatments also got a part of my heart. Isn’t that swell? Oh, yes, my lung, too, was radiated. Heart, liver, and lungs! Oh, my!

There are also lesser, yet also life altering, long term effects, such as a change or decrease in the ability to taste, chronic fatigue, mental fuzziness to the point that some people are unable to continue in their careers, loss of mobility, nerve damage especially in the feet and hands, chronic constipation or the opposite, chronic diarrhea.

I don’t think most people are aware of this. That to “survive” does not mean to “get better” and that life isn’t always pink and rosy are not parts of awareness.

Yet, we are aware that there’s a “cure” out there. In fact, when it comes to breast cancer and pink, “awareness” seems to be synonymous with “cure.” However, one would think that if an organization were really, truly concerned about a “cure” their money and focus would go to what…awareness/education? or research? prevention or parties? I’d like my money to go to research and prevention. Check out these charts to see where it really goes.

Just so you are aware.

~Desiderata

Blogging vs. Journaling...Self-invasion of Privacy? Polluting the Atmosphere? Therapeutic?

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[Boo-Bee Trap] ... I understand it is a place for you to write some of your most personal thoughts. AND as you know that by posting on the Internet anyone and everyone is privy to those thoughts. An online Blog is very different from a Journal that’s tucked under one’s mattress that the maid or one of your kids discovers. A Journal Blog is not a bad thing. What is curious, and I use that word specifically, is how each of your readers interprets the postings, what projections they use to process the information, and how they respond. As a reader, my lens is myopic, (i.e. the literal word), and the words engage my multivalent imagination to create “other stories.” I read your Blog and “I feel despair.” Why? Because I can’t ask questions, I can’t ask for clarification, I can’t hear your voice, I can’t read your body language, and for all the other things I can’t do from 3,000 miles away.

Journaling under the pillows, hidden in mattresses, holding close the pain, the revelations, the frustrations and anger -- it is not satisfying. It does not provide the cathartic detoxing needed while I maneuver how I am going to manage a chronic disease. I believe that with this particular disease, cancer, I am not alone in this need. The universe, regrettably (and not because I don't like sharing the blog-os-phere, but because it is stark evidence of the proliferation of this epidemic) is replete with others sharing this need.

Why?

For me, it is simple and selfish. The the pain, the revelations, the frustrations and anger I feel - as the one managing cancer, cannot be shouted out loud. Nor can they be tamed to sit quietly as characters on a page. My friends and loved ones cannot and should not suffer the daily dose of the cacophony of feelings and thoughts that wash over and invade me. It is too much. And, nothing I would ask those near and dear to suffer. This is not because I underestimate their strength, but because I see so much pain and worry reflected back at me, coupled with their own need to be reassured that I am okay. At times, the latter is too much responsibility. This is the simple selfish part.

Journaling is good. I have advised many persons on the benefit of doing so. Journaling is a cathartic way of expressing and sorting out our thoughts. But journaling for me at this time is stifling. It keeps the SCREAM isolated inside my own head. And honestly, I am getting a headache!

So, read if you like. Don't if you don't. Add your nuggets of wisdom as you choose. And if you would like to SCREAM along with me, add your voice to the cacophony. After all, if you SCREAM and there is no one to hear you, than how can you be sure that you really made any noise? Boo-Bee Trap blog post dated August 16, 2009.

At the same time, the sheer weight of what goes on in my soul, mind and heart on a daily basis cannot be contained in pages stuffed in a drawer. There is no relief. The blog-os-phere is the immediate spectral universe that is at my disposal. I can write, vent, scream, cry, organize, distill and guilt-free "share" (aka unburden) in the time it takes to click a mouse. (hmmm...maybe the EPA should do an environmental impact study on the toxins I am purging...but I digress)  The images chosen for each blog is a peep hole into my state of mind when I am writing - reflective of my inner lens, or just base exhibitionism.

The "payoff", if that is the correct noun, is the varied responses and perspectives of my small readership. It breaks through the isolation and allows me to look through someone else's lens - whether that lens belongs to a stranger in Greece, Iceland, Latvia, Russia, India, France, the Ukraine, or dear friend 3000 miles away.

If all of this stuff were confined within conventional privacy, at least for me, the organic and chemical toxicity that I physically strive to manage would ultimately seep into and poison my soul.

WooHoo! Broke 10,000 Views on Boo-Bee-Trap

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BOO-BEE-TRAP has reached several milestones this summer:

• It has been providing me a cathartic conduit to journal for two years and running.
• It has seen me through two birthdays.
• It has seen me through two stages in my diagnosis.

...and...it has broken the threshold for 10,000 page views!!!!

I guess somebody is watching me in my fishbowl. . 


Pageviews all time history (as of September 18, 2011)
. . . 10,006*




*A moment of indulgence as I degrade myself as a WooHoo girl (think...How I Met Your Mother)