Wednesday, October 3, 2018

Breast Cancer "Awareness"=A Broken Record

If I see one more pink appliance or punny t-shirt slogan for Breast Cancer "Awareness" I'm going to scream. Let's be honest here...Breast Cancer "Awareness" (BCA) as it pertains to "Saving the Ta-Tas" or similar titillating (yep, I'm not above a punny), pink ribbons (and anything marketable in varying shades of pink), and cries to Walk/Run/Donate for the Cure are a broken record. Meaning nothing new or interesting is actually being done in the name of Breast Cancer Awareness. Unless you've been hiding under a rock for the past 10+ years, you're aware that women have breasts and those breasts sometimes get try to kill them. Women are ordered to do self-checks, get mammograms, and basically practice pro-active self awareness as their breast health is concerned. The thing is that most breast cancers these days are very survivable. Part of that may be the inundation of "awareness" making women more pro-active in their breast health, but it is mostly that technology and medicine finally reaching a point to fight the beast that is cancer on a whole scale level.

In these days of "Me Too", it seems like we should be less focused on breasts and more focused on the whole person. Its apparently not as fun to support awareness for the other types of cancer--Childhood, Lung, Ovarian, Testicular, Melanoma, etc. However, many of these cancers have a much higher mortality rate than breast cancer ever did. These other forms of cancer don't provide the puns or evoke the images that sell t-shirts.

Of course, the whole "awareness" machine, in my not-so-humble opinion, doesn't really play into the rate of survival--instead it is primarily a financial boon for those in the 'industry' of providing that "awareness". For instance, when I first clicked a link to an article by the American Cancer Society titled "Breast Cancer: Info and Support" the page that loaded was wholly about gaining donations. There was no information, no support, just requests for money from ACS. By the time this posts, that link may very well open the page with actual information and support, but it may not. In my years as a survivor, I have found that so many organizations have their hands out to support Breast Cancer "Awareness" that it is impossible for them to all actually *do* anything to offer real support for breast cancer victims or even real research into breast cancer. Other breast cancer survivors have put together lists of things you can actually *do* to support those with breast cancer and to ensure that any funds you donate actually go to research and care.

As a breast cancer survivor of just over 9 years, I can tell you the support I received from the big name "Awareness" and even self-titled research organizations was zero. The support I received came from individuals stepping away from pink merchandise and giving me a hand--whether in funds, prayer, or physical help. Sure, some funding trickles into some out-of-sight research laboratory, but the majority of the funding for most of these organizations gets funneled through so many channels that the actual researcher needing funds to continue their research goes unaided and promising research may be abandoned due to lack of attention-grabbing headlines generating funding.

I've done bio-medical research. It isn't the glamour you see of pristine laboratories with multi-million dollar instruments on perfect workbenches while coiffed and made-up scientists walk about carrying clipboards right before shrieking "Eureka". Actual research is done in tiny steps in out-of-sight laboratories that often have outdated and sometimes cobbled-together equipment by frazzled and harried scientists that often go for extended periods without rest, food, or even verifiable results. There are just as many, if not more, failed experiments and research avenues that must be pursued. These hard-working scientists are the ones left out of the spotlight when Merck, Pfizer, or some other big-name produces a drug to treat cancer. These scientists have often left blood, sweat, and tears in their laboratories hoping, one day, to provide a small answer to the question of cancer. Often these scientists are even vilified by the public as 'hiding' cancer cures, being too obsessed with money to ever really cure cancer. The majority of scientists in the bio-medical field are truly in it to help people, even if it is just isolating and characterization of the bacteriophages found in raw sewage. <---that 13="" 2="" a="" after="" and="" attacked="" b="" bacteria="" bacterial="" bacteriaphages="" bacteriophages="" cause="" characterizing="" common="" definitely="" destroy="" did="" endocarditis.="" file="" found="" from="" get="" howard="" hughes="" i="" in="" institute="" into="" its="" let="" likely="" me="" medical="" most="" my="" nbsp="" not="" of="" project="" question="" raw="" report.="" research.="" research="" rich="" s="" scholar="" sewage.="" shortly="" summary="" tell="" that="" the="" turned="" undergraduate="" viruses="" was--isolating="" way="" what="" years="" you="">That
is the way research goes sometimes...
There are great research organizations out there and there are aspects of the leaders of the "Awareness" campaigns that are fruitful, but the sad fact is that Breast Cancer has been highjacked as a money-making sob-story to fill the coffers of both fly-by-night and legitimate support organizations. Simply by advertizing breasts as being in danger, these organizations are capitalizing on the age-old adage that "sex sells". Please don't buy it! 

Tuesday, September 18, 2018

Long Overdue Update

Man, it's been a long time since I've written or updated my blog. Things have changed, but things have also stayed the same. 

Rachel, my miracle baby, is closing in on 9 years of age this November. I just passed my 9 year cancer-versary in July. I've been unemployed for a long time. I'm still fighting an ever changing battle with my health, although the battle is mostly invisible. It's this last aspect that is most troubling. 

My health is a puzzle. To the observer, I'm a healthy, normal, fit-looking 30-something woman. From my point of view, I'm s quagmire of odd symptoms, never-ending pain, and constant struggle. You see, cancer was the easy part of my journey. Chemotherapy was a cake-walk. Even the horrendous extended and numerous surgeries were nothing compared to my daily life now. My Thoracic Outlet Syndrome and nerve damage has not loosened its grip on me one iota. Instead, TOS invited its friend Chronic Migraine to visit. Like an uninvited and oblivious guest, chronic migraine has over stayed its welcome and tortures me on a daily basis. 

Chronic migraine is a condition that baffles even specialists and neurologists. They don't know what causes it, why it happens, who it will strike, and when it will go away. All they know is that diagnostic tests are useless and medication is trial and (mostly) error. It's been years since I've woken from a nights sleep without a severe headache. These headaches are accompanied by nausea, vomiting, disorientation, numbness/tingling in my face, and my new favorite (sarcasm font needed) symptom loss of consciousness. Yes, that's right I pass out with little to no warning whether I'm actively engaged in an activity or laying down. I spend most of my days in s darkened bedroom (black out shades, doors shut, and no lights even seeping under the door cracks). When I am able to be out and about, I still wear dark sunglasses and walk a bit unsteadily. I'm not allowed by good conscience to drive since I frequently (as in daily) pass out. Even a trip to Church for Sunday Mass is often out of the realm of possibility for me. 

It's hard to live life this way. There are some days that I almost wish I could have been strong enough to refuse treatment, give Rachel life, and let the cancer take me... However, I then look at my little family of 4 and see that I'm still needed and wanted. I still school my children-Simon is 10 and in 5th grade, Rachel is 8 and in 4th grade. My husband, Andrew, still works on cars and needs me as his 'Dumbo feather'. This year he and I will have been married for 11 years! We've made it through things that some couples never see and we still love each other and stick together. 

Rachel and I have been lucky enough to have a benefactor that bought us a horse to enjoy (more on this story at a later date). Rachel couldn't have a regular horse because of her life-threatening allergy to horses, but loves them very much. So I researched and found that American Bashkir Curly Horses are hypoallergenic. And, since horses are like potato chips in that you can't have just one, we now have a second Curly to keep our first company. Rachel is doing wonderfully learning to ride her horse, appropriately named Faith. I can only cautiously ride for a few minutes to demonstrate something for her, but those few moments are moments of true freedom and joy. 

All in all, even though life is still full of lemons, I'm learning to make lemonade, lemon tarts, lemon meringue, basically anything out of the lemons life hands me. 

Wednesday, April 27, 2016

What Do You Do With Gift Lemons?

There are some days that just don't end well. Today was one of those days. You see, I've been struggling since 2009 with the 'gifts' breast cancer gave me...

Initially, it was the cancer itself, diagnosed while I was pregnant. That was trouble in and of itself. However, with wonderful family, community, and prayerful support around the world, I overcame the scourge of BRCA1 breast cancer while pregnant through chemo during and after my successful pregnancy. It was difficult, but as the saying goes, "if it doesn't kill you, it makes you stronger." 

Fortuitously, the strength I gained from that battle helped me in my next battle - the battle in my work-place. I've tried not to mention the struggles I had there too much in public for my own protection, but suffice it to say that my superiors were not thrilled that one of the 'gifts' cancer gave me -- life-long nerve damage and Thoracic Outlet Syndrome. Prior to my cancer diagnosis, I received written commendations for outstanding work from both inside and outside my workplace. However, after my diagnosis, treatment, return to work, and subsequent search for relief of the 'gifts' from cancer my superiors began to complain of my sometimes sporadic attendance - even though it was covered by FMLA and/or doctor's notes. Technically, my work was on the same level as before. I know this because in that line of work, every report undergoes peer and administrative review prior to completion. There is also a Technical Leader, a person that ensures compliance with written protocols and proficiency testing. For about 3 years I did everything in my power to maintain my job and my integrity. Yet, when the time came, it didn't matter what *I* knew, but what my superiors wrote and believed. So I was terminated with black marks on an otherwise spotless record. 

During this struggle with work, I was also fighting on another front -- one of physical pain and frustration of not knowing what caused the pain. After I healed from my mastectomy, my chest wall, collar bones, neck, shoulders, and arms ached all the time. Those areas felt like I had lead weights pulling them down all the time. On worse days, I had shooting pain from my neck down my arms and into my chest. Sometimes the pain would get so bad I would be unable to move my head, neck, and arms or even take a deep breath. On those days, Andrew would have to help me dress and/or wash my hair. Days like that would bring me to tears and a defeated state of mind. I went from doctor to doctor trying to find relief. Different doctors had different diagnosises and treatments. Finally, on a trip back to Houston, in the Supportive Care Unit, one of the doctor's got me on the right track. However, even then, it wasn't a simple fix. In fact, I'm still struggling with the same root issues, nerve damage and Thoracic Outlet Syndrome, and issues that are aggravated by it today 4 years later. 

Back to today ending poorly... I've been going through old paperwork that dredged up all these memories. I found the mountains of paperwork about my diagnosis. There are the skyscrapers of paperwork that are even more depressing about my workplace struggle. I still feel the same mixture of fear, dread, betrayal, and humiliation from the way I was treated there. I'm sorting through all this paperwork for something that may or may not be beneficial. Yet, right now, all this walking down memory lane reminds me of the bad things I've lived through. 

In a way, though, it's also a reminder of the little miracles in life. Rachel is a healthy 6 year old getting ready to enter the 2nd grade in our homeschool! I just re-read the reports of the 1.7cm mass that was present in ultrasound immediately after Rachel's birth, but disappeared thanks to prayers around the world by the time I got a PET scan a week later! I'm still cancer-free as of my check up last week! Without my income, we still have our home and food in our bellies even though times are tough. Since I no longer have the added stress of work, some of my symptoms have gotten better. So, I guess, today hasn't ended that poorly after all. I just need to make lemonade instead of sucking on lemons. 

My Chemo-Jane hair-style

My Chemo-Jane hair-style
I just had to have my mom buzz my hair because it was falling out so badly.

Pre-op wearing my hand-crocheted cap with my prayer shawl.

Pre-op wearing my hand-crocheted cap with my prayer shawl.
My loving husband is watching me distract myself with a game on his iPhone.

2 days after my BMX w/ 100ccs in the TEs

2 days after my BMX w/ 100ccs in the TEs
I even have a fashionable belt to hold up my drains.

3 weeks post-op w/ 400ccs in each TE

3 weeks post-op w/ 400ccs in each TE
The smile is fake because the TEs were irritating!