When Prophylactic Doesn' Mean Immoral

Recently, Angelina Joli made a big splash in entertainment news as she wrote about her prophylactic bilateral mastectomy. She and I share family history of relatively young women being stricken with this beast to the point of death. Luckily for her, she was able to act pre-emptively instead of finding herself in an oncologist's office hearing the dreaded "You have cancer". In addition to sharing a family history, we also share a mutation in our BRCA1 genes that makes us at least 85% more likely to develop the dreaded disease. Our mothers were also both diagnosed as relatively young women (my mother was 48, Joli's mother was in her 50s I think). My mother survived, while Joli's succumbed to the disease. Other breast cancer survivors in the entertainment industry have come out with their stories as well, but Joli's struck closer to home for me for some reason. Perhaps it's the BRCA1 connection or perhaps it's that I now have more time to think about what's going on in the world. For whatever reason, I am exquisitely aware of the controversy her decision has sparked. In my expanded world of social networking sites, I have many devout Catholics and Christians that I respect and have supported me throughout my trial. However, instances like Joli's announcement sometime reveal more about how people view the decisions I made as a result of my diagnosis. 

You see, while I was diagnosed with an active cancer, it was self contained and only on my left side. In other words, the excisional biopsy for diagnosis could have been the final surgery for my cancer. After all, the tumor was removed in its entirety and chances were good it had not spread to my lymph nodes. Yet, due to my genetic predisposition and more than a little bit of fear, I not only chose to remove my entire left breast, but also my healthy right breast and both ovaries (since BRCA1 increases the risk of ovarian cancer by 40%). In the medical community of MD Anderson, there was no real discussion of only having a lumpectomy. It was mentioned as a possibility, but for very different circumstances. My thoughts were to similar to the tongue-in-cheek slogan, "Yes, they're fake, but my real breasts were trying to kill me." During the acute phase of my treatment I was very active in a community of other women genetically predisposed to breast cancer. Some of them, like Joli, chose to remove their breasts before they could become diseased. I must admit that the stories of women as young as 20 having this major surgery shocked me, but not as much as the women who chose a simple lumpectomy or only alternative treatment for their disease. I couldn't imagine having this sometimes fatal disease, but not throwing every treatment possible at it. The risk of reoccurrence for BRCA1 breast (and most of the other genetic forms of breast cancer) are significant. Yet, as a contemplative and respectful person, I recognized that this decision was very personal and must not be taken for granted.

In light of Joli's announcement, some expressed their belief that her decision was too drastic. It was speculated that changes in diet, full-term pregnancies at a relatively early age, breast feeding, and other lifestyle choices were sufficient. One even commented that Joli's decision displayed a lack of faith in God and too much in science. Again, while my situation differed from Joli's, I couldn't help but apply these sentiments to my decision. My full-term pregnancies were in my mid-twenties, but were both preceded with two miscarriages each. As my readers know, my sixth pregnancy preceded my diagnosis by only 20 weeks. Additionally, I have never been a huge fan of red meat, but enjoy broccoli and other foods known to be good for decreasing risk. Simon, my oldest, nursed for a year, only stopping when he chose, on his first birthday. None of those choices had prevented my cancer at 28, so I've since found that while these choices won't hurt, they obviously don't guarantee the absence of breast cancer. 

Prior to this major decision (my oophorectomy), I spent a lot of time in prayer and conversation with trusted Catholic priests, doctors, and theologians in addition to scouring scientific journals. Respected and learned doctors recommended oophorectomy between the ages of 35 and 40, several years away for me, but conceded that in my situation (my young age and pregnancy at diagnosis and the concerning factor of my miscarriages & gynecological issues), the choice was with merit. Deciding to sacrifice my ovaries also obviously sacrificed my fertility, even though I had wanted at least one more child. Conversely, removing my ovaries would also eliminate my suffering with severe endometriosis and poly-cystic ovarian syndrome. Because of these secondary issues, I consulted the Pope Paul VI Institute's Dr. Hilgers to determine if he'd found, through NaPRo Technology and his Creighton Model research, any bio-markers to detect ovarian cancer through charting. After all these prayers, conversations, and research, I made my choice to have the oophorectomy. 

While I am comfortable and at peace with my decisions, a small part of me is wounded when those I respect indicate my choices were extreme or a matter of placing more trust in science than in God. Sometimes I also suffer from baby envy as my friends excitedly tell the world of their pregnancies. Other times, when it is assumed there are better alternatives--especially from people who've not faced my situation--that I didn't investigate, I feel as if I've been slapped. Most people are ignorant of not only the horror of realizing you have cancer, facing chemotherapy and surgery, and the constant anxiety of a recurrence. Those that are compassionate, after hearing my reasoning and the statistic behind my choice, concede that in my position they likely would have made the same choice. Many are immediately swayed by my explanation that I chose to reduce my risk through removal of 'healthy' organs, not out of fear of death, but to live for my children. These are the people who do not hurt me by their opinions because they are mature and compassionate enough to realize how much thought, research, and prayer went into the decision. Yet, there are some who steadfastly refuse to be compassionate and insist, even in my situation, they would not make this "sinful" decision. Unchristian is not often a term I apply to others, but it seems applicable. I think these people are confusing prophylactic surgery with prophylactics (condoms and diaphragms). The former, and only the former, are considered moral. As a matter of fact, I'm hard pressed to find any Catholic moral theologian who disagrees with prophylactic surgeries to prevent cancer--even if fertility is sacrificed. With this in mind, I pray for those misguided souls, not simply because they hurt my feelings, but for God to preserve them from being faced with the same decision I was. Perhaps one day, God will grant science a less invasive means to prevent cancer, but until then, I trust Him to guide those who ask into the right approach for them.

Here are some resources to learn more about BRCA1 and BRCA2 Breast and Ovarian Cancers.

MD Anderson research slide show - http://www.mdanderson.org/education-and-research/departments-programs-and-labs/programs-centers-institutes/blanton-davis-ocrp/noah-kauff-hereditary-ovarian-cancer.pdf

National Cancer Institute Hereditary Breast and Ovarian Cancer facts - http://www.cancer.gov/cancertopics/pdq/genetics/breast-and-ovarian/healthprofessional

Aetna Health Insurance Policy information - http://www.aetna.com/cpb/medical/data/200_299/0227.html

MedScape information (my doctor, Jennifer Litton) is quoted - http://www.medscape.com/viewarticle/589280

Journal of Clinical Oncology article on Risk Reduction in BRCA1/2 - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2815712/

What Do You Mean By Choice

For the first time ever, I'm going to Washington DC for the annual March for Life! I'm so very excited to join in this heroic event aimed at protecting the most vulnerable of those among us: the unborn! I plan on being bundled up, but still wearing my Catholic Pink ribbon wear. It is disheartening that the scourge of abortion has been promulgated and protected by legislation for 40 years. However, I will be a part of the historic crowd witnessing the ever-present protest of this ghastly "choice". 

Because of the scourge of abortion, for me the word "choice" has become taboo. Every time I hear it as part of an ad on television or radio, I'm cringe. Sometimes I wonder if there's a reason the word "choice" is featured so prominently in the ads I hear--especially those aimed at any healthcare product or service. Obviously, the word choice is not really taboo. However, it is also not a good descriptor for those willing to slaughter innocent babies for any reason. 

Of course, now, even the most Pro-Choice group of all, Planned Parenthood, is slowly stepping away from their use of the word "choice". Their new ad campaign features cartoonish feet marching hither and yon while asking us (the viewers) to not "box her in" and to "step into her shoes". I wonder if our blog questions of "What do you mean by choice?" Had any effect on the discarding of their oft-used word "choice". Although, I think the real reason probably lies in the fact that the pro-abortion magnates are simply trying to tug our heart-strings by making us walk in their figurative woman's shoes. 

Of course, by doing so, they're ignoring the fact that many many many women (and men) who are adamantly pro-life have been in their poster-woman's shoes and either made the choice for life and realized the merit or had an abortion and now regrets their "choice". I know many women in both situations and even count myself among them. That's why the pro-abortion crowd uses misleading or even down-right untrue propaganda to cloud the true issue. The true issue isn't about informed and empowered "choice"; their goal is to snag vulnerable women with their "support" and "choice" of abortion without presenting all the facts. If presenting true "choices" were the pro-abortion people's intended goal, they would not fight so hard against parental notification, waiting periods, viewing ultrasounds, face-to-face consultations prior to the procedure, and other neutral bills aimed at educating women about their pregnancy. Once again, the rhetoric spouted against these neutral (and often common standard of care protocols: parental notification, ultrasounds, and face-to-face consultations) pluck at naive heartstrings and outright lie about the truth. 

At every turn, the pro-abortion people obfuscate, disassemble, and flagrantly omit women's real "choices" when in a "crisis" pregnancy. Having been pregnant 6 times in 3 years, I know that when that positive indicator appears on that test-stick, thousands of insecurities, fears, and confusions overwhelm the system. Throughout the 9 months, sometimes irrational thoughts and behaviors manifest themselves. Popular culture, particularly from parties involved--even indirectly--with abortion or contraception, encourages these negative aspects of the blessing of new life to make it seem like more of a curse. How can presenting only the negatives of an option be empowering or even fair? In other words, the only "choice" favored by pro-abortion people is abortion. That's why we ask each year, "What do you mean by choice?"

http://www.jillstanek.com/2013/01/tomorrow-ask-them-what-they-mean-by-choice-day/

Three Long Years Ago...

What a difference three years makes. This time three years ago I was bald, pregnant, and living with breast cancer treatments. For Halloween, I painted my 8-month belly as a turkey in honor of the due date of my baby girl. That year's Thanksgiving was especially well observed by my family and friends as we welcomed my baby girl, celebrated her daddy's birthday, were amazed at our survival of a breast cancer diagnosis at 20 weeks pregnant, as well as enjoyed usual Thanksgiving traditions.

Two years ago, I was recovering from an emergency hysterectomy precipitated by an abscess formed during my oophorectomy a month prior. The oophorectomy was a preemptive move to avoid ovarian cancer that so often goes along with BRCA1 breast cancer genes. I also had the honor of being blessed with the gift of the Right to Life of Owensboro's Life Award for my pro-life and pro-woman journey through breast cancer while pregnant. My children were well on their way to charming anyone within distance of the two year old boy and almost one year old girl.

One year ago, I was in a hospital in Houston, TX recovering from my third reconstructive surgery. This third surgery was one of my last steps to completely overcome the obstacle of my journey with breast cancer. I had my modified radical mastectomy when my daughter was about three months old. However, the second surgery, replacement of the expander implants with regular implants, had the unforeseen consequence of causing further pain. In an effort to recover from the pain, I chose to have the implants completely removed and use my own abdominal fat tissue to reconstruct my breasts. The surgery was long, difficult, and painful, but resolved some of the pain issues. Shortly before this surgery, I was again honored. This time the honor came from the Kentucky Cancer Program. Rachel and I were selected to be representatives of the Faces of Cancer photography series.

Five months ago, I had my last surgery (I hope and pray) connected to my breast cancer diagnosis. This last surgery gave (Dr) Adams (back) my first rib. Again, this surgery was a last-ditch effort to resolve the pain that hadn't loosened its grip on me since my mastectomy.  I had finally been diagnosed with something "treatable" instead of chronic idiopathic pain. Although Thoracic Outlet Syndrome isn't truly "curable" it is treatable with surgery, physical therapy, and time.

Just this past week, I had my four month check-up with my oncologist. He gave me an all-clear for another four months. Although no one really thinks I'll be diagnosed with cancer again, these appointments make me very nervous. That same day I also took the opportunity to peek through an open window as the door closes on another aspect of my life. 

In less than a month, my miracle baby will turn three. Time really does fly when you're having fun. Both of my children give me such joy and are so much fun that time with them seems truly fleeting. As my children blur in photographs, so too do the misfortunes that have faced me, my family, and my friends these past three years.

Since my diagnosis that fateful July day, I have tried to live my life as if each day is my last. I praise God for all the wonderful people He surrounded me with through this difficult time. He also gets many thanks for the blessings of my two very healthy (some might even say robust) children. My husband and I know that we are triply blessed to have three sets of very active grandparents to help us care for our babies. We also offer thanks for our joining our lives as one. Above all, each and every day is an opportunity to praise God for the most important gift of all: LIFE!

Another Breast Cancer "Awareness" Month

Its October again... Everything is swathed in pink. Please take the following as advice before you cover yourself in pink for the "cause"... Breast Cancer Awareness month is an euphemism for "Give us money so we can pay our salaries"! Forgive me if I sound bitter or snide, but I was diagnosed at 28 years old and 20 weeks pregnant and Komen, American Cancer Society, and most (if not all) big name "Awareness" groups offered me two choices when I was diagnosed: 1) hope that I didn't die before I had my baby without treatment or 2) kill my baby to seek treatment. However, MD Anderson had (has) been doing chemo on pregnant women for more than 20 years with better results than on similar post-abortive mothers. No thanks to those big-name organizations, not only did I survive, but also my almost 3 year old daughter survived as well! We are the fifth and sixth generation of survivors, but only the last three of us actually survived (my mother is now a 7 year survivor, but her mother died at 58 and her grandmother and great grandmother died in their 40s).

How did those big organizations "support" me in my time of need? How do those big name organizations further the "cure" by not only killing future generations but also condemning those women who fall for their lies to worse survival rates? Who gains by the continued denials of links or causation of breast cancer by hormonal contraceptives and abortions? Where's the "cure" there. "Awareness" means less than nothing if erring on the side of caution (for instance publicly admitting possible links/causation between hormonal contraceptives and abortions and breast cancer -- and other cancers). It should be called "Brea$t Cancer Awarene$$" because all it does is line the pockets of the organizers while presenting false hope to victims and supporters!

Even if the scientific link between abortion and hormonal contraceptives is weak (it isn't), women deserve to be told the WHOLE truth about these "necessary" parts of "reproductive rights". For instance, the link between BPA and the ills it causes aren't much (if any) stronger than the links between hormonal contraceptives and breast cancer, yet everyone avoids BPA to err on the side of caution (http://www.ncbi.nlm.nih.gov/pubmed/20945454 ). To be perfectly honest, I actually didn't realize until looking at the journal articles while writing this post, that the type of carcinogenic chemical of BPA is actually VERY similar to hormonal contraceptives (estradiol, estratone, estrogen-like chemicals). Why shouldn't the big organizations advocate the same type of caution for abortion and hormonal contraceptives? The WHO (World Health Organization) has ranked contraceptives as Level 1 carcinogens (http://www.who.int/reproductivehealth/publications/ageing/cocs_hrt_statement.pdf ). If the purpose of these organizations was truly to reduce breast cancer (and other cancers) wouldn't they advise women to avoid hormonal contraceptives? Instead, the supposed "benefits" of these "reproductive rights" are said to "outweigh" the risks... As a survivor, if I thought there was something I could do that was completely choice oriented to prevent my daughter from getting breast cancer, you'd better believe I'd do everything in my power to see that she made the right choice!

Where's the benefit of that type of false "awareness"? T-shirts, bumper stickers, etc with cutesy "Feel your Boobies" or "Save the Tatas" slogans* don't actually further the cause of finding a cure or providing real life support for victims. Instead all they do is demean the victims of this horrible disease. Don't get me wrong, I own a few t-shirts with similar slogans, but I AM a survivor. Plus, most of them (except the "Fight like a Girl" one) were given to me by friends in an effort to lift my spirits by letting me know they were supporting me in my struggle. The friends who gave me those t-shirts didn't just plunk down $20 for a shirt and consider themselves supporting me in my struggle. No, they actually DID things to help me: sent notes of care/support, listened while I cried or whined, helped me with a real task in life, prayed for me, spoke to me of courage and strength, etc. The t-shirt was just the physical and remaining reminder that they DID something that actually helped me--even if it was just emotional or mental help. That is the way true supporters can lend a hand to victims of this horrible disease.

Some of the newer more popular slogans are actually innuendos that over-sexualize the disease and body parts involved. The "boobies" I lost during my mastectomy weren't playthings or frivolous slightly naughty bits--they were nutrition for my son for his first year of life. They were a visible representation of my gender. Sadly, they were also linked, in ways I did not and still do not understand, to my self esteem and self image. Yes, I can laugh about cutting them off because they were trying to kill me, but you don't know the feelings I hide behind that laugh. I have numerous very real physical scars from the three surgeries to remove and "replace" those body parts, but worse than the physical scars are the emotional ones that no one--not even other survivors necessarily--can understand. Every women (or man, since they get breast cancer too) has different breasts, and her "relationship" (for lack of a better

word) is unique to her, so her response to these traitorous body parts and the subsequent removal or alteration of them is different too. Often, women are evaluated by their breasts because we live in a highly sexualized world. So losing or altering this most visible sign of womanhood can be highly traumatic. It's really only something some of us laugh about because the alternative is crying. When you add the other losses (loss of ovaries, tubes, uterus, cervix, etc) some of us face because of related cancers, the emotional toll rises and hearing or seeing such jocular interpretations of our loss(es) can be devastating.

If you're aware of breast cancer and want to help 1) find a struggling victim in your neighborhood or area to support, 2) thoroughly research any organization BEFORE donating, 3) don't play meaningless "games" for awareness sake, 4) open your eyes to the truth of breast cancer (and other cancers) and let others know it, and/or 5) pray for a cure, better survivability, and more real world support for victims. Those are things that really help real people who are victims!

*I don't mean to pick on just these two slogans, but they were the first ones to come to mind... I have no affiliation or hatred of any of these slogans except as explained above. If it makes you feel better about yourself, by all means wear or buy products with these types of slogans on them. However, don't expect me (or other victims/survivors) to appreciate it if that's all you do.

This post seen first at www.CatholicSistas.com

Changes

I'm not feeling very well right now, so be forewarned, this isn't going to be a cheerful post. :-/

As I looked at myself in the mirror this morning and again tonight, my appearance (to me) is sadly lacking. I'm not talking about the "wings" I still have from my "tummy-tuck-boob-job reconstruction" or the significantly smaller breasts that resulted from that surgery. I'm not talking about the years (I feel) that have aged my face. I'm talking about the fact that washing my not-even-shoulder-length hair is a task I leave until absolutely necessary. I'm talking about the dresses I wear so the pain of my abdominal scar doesn't get too bad to bear. I'm talking about the swelling above my left collar-bone from my most recent surgery. I'm talking about the exhaustion in my eyes from fighting day in and day out to regain normalcy. Then, just under the surface, lies the nearly chronically upset stomach (caused by stress) and the tension in my shoulders, neck, and back. 

Most people don't see any of the above as significant. They see that I present myself to the best of my ability and either think I lack style, class, or care; or they don't even notice the deficiencies I mentioned. When I'm feeling low, as I am now, it's so difficult for me to see past my struggles, As much as I don't want pity, I do wish for understanding. There are some in my life who deny that my life hasn't returned to normal. There are others that sincerely support me through the good and bad, I thank God daily for those in the second group as I dread my interactions with those in the first group. 

There, my whining session is over. Sorry... Please return to your regular state of mind. Pay no attention to the woman behind these words. God bless! 

Blast from the Past

This afternoon on my commute home, I was listening to a random WMA playlist I created in 2005. At the time I was 4 years out from losing my best friend and fiancé to metastatic melanoma (July 23, 2001 -- RIP). I had been out of school for 2 years and had my current job for about a year. I had yet to meet my husband. The songs I chose for this playlist seem completely random; I've got Incubus, Nickelback, and Default playing right after Faith Hill, SheDaisy, and Rascal Flatts, then I've got the Beatles and Creed playing after Allison Kraus and Nickel Creek. Yet, when I listen to the music in this seemingly random playlist, I return to some of the emotions I struggled with during those times. Honestly, the emotions I'm struggling with now are pretty similar. Then, as now, the words of Creed's Six Feet from the Edge keep reverberating through my mind, "Now that its over, reflecting on all of my mistakes, I thought I found the road to somewhere, somewhere in His grace. I cried out, 'Heaven save me,' but I'm down to one last breath, and with it let me say, let me say... Hold me now, I'm six feet from the edge and I'm thinking, 'maybe six feet ain't so far down'."

In 2005, like now, from the outside everything seemed normal. Strangers and aquantances saw a young woman going through life with a smile. True friends and family saw that behind the smile lurk tears of loss, sadness, despair, and insecurity. Physically I looked fairly well put together. I still eschew make-up for the most part. My hair was even similarly styled, which is to say unstyled. The 7 years since I arranged that playlist have been filled with momentous changes: marriage to my new best friend, my mom's cancer diagnosis, creation of 6 souls (even though only 2 made it to birth), my cancer diagnosis and subsequent fight for a healthy body. Yet, here I am, fighting the same inner demons I thought I'd vanquished.

Then, I was still reeling from my fiance's death even though the general population thought I'd grieved enough. Now, I'm still reeling from the loss of my relatively healthy body even though the general population thinks I'm "cured". The general opinion that I should be further along in my recovery never ceases to erode my self-confidence--just as it did then. However, when I parked my car in my driveway this afternoon, the biggest differences in then verses now were dancing on my back porch: Andrew, Simon, and Rachel. Earlier this evening, as Andrew hugged me as I silently wept, first Rachel, and then Simon climbed into our arms. With two active, healthy, and compassionate children like them, there is no time to wallow in tears. Even though my life is still in tatters, watching my two children interact with one another and us weaves the fabric of my life back into one piece. Oh, the mended places are still weak and prone to tears, but the overall effect is one of wholeness. Combining the theraputic effect of my children and husband with the graces from my Father in Heaven is the only way I'm able to continue on mending my tattered life time and time again.

To me it seems as though I'm constantly begging for your prayers and intercession for the bombshells that shred the tapestry of my life. I feel like a whiner and drama-queen at times because it seems as though there is *always* something devastating to me. When others tell me I'm strong, an inspiration, or some-such, the bleakness in my mind doesn't receive the soothing effects of the words. All I see is that once again, I'm humbled to have to beg for more prayers for the seemingly endless string of catastrophes in my life. I don't see strength in my actions, I only see that I have two choices: to completely give up or to continue to fight even though I am weak. I don't see the inspiration in my struggles because I know that at times I ask God to just release me from my prison. Yet, deep down, I know that God and you are pulling for me. Even when all I see are the solid bars of my prison, you ask God to light me from above, and He does. Oh, sometimes I don't see the light because I'm too busy closing my eyes to fight the darkness. Eventually, I open my eyes and see a new day where the bars of my prison turn into a ladder out of the depths of despair. This wouldn't be possible without intercession from you here on earth, the Saints in Heaven, and God's will. So here I am, asking for your intercession once again... Please hold me in your thoughts an prayers because I know that is how I've made it this long. Thank you!

Under My Smile

The last three years have been doozies. From recovering from a life-threatening miscarriage to conceiving again within a month... From waiting to pass the first magic 12 weeks of pregnancy to being diagnosed with breast cancer at 20 weeks... From the mind-numbing terror of the unknown as I embarked on my miracle journey to treat my cancer while maintaining my pregnancy to delivering a healthy baby girl... From beginning new chemotherapy to cutting it short due to an allergic reaction... From my mastectomy to my ill-fated oophorectomy... From my ill-fated reconstruction to my journey through pain management... From my final reconstruction to a diagnosis of brachial plexopathy... From a diagnosis of thoracic outlet syndrome to surgery to correct it... From my daily struggle to deal with the pain associated to continued physical therapy. The list goes on and on. 

At each juncture, I've wondered if I was strong enough to continue. In the back of my mind is always that frightened child who clings to safety, but publicly displays strength and even humor at life's twists and turns. At times, I let the frightened child express herself through this blog, on the shoulder of my dear husband, at the bosom of my mother, or in the dark during my prayers. There have been countless instances of asking myself whether I'm capable of going on. In these dark moments I try to cling to the Light that is God. Yet sometimes, the darkness is so overwhelming that I can't find the light. Sometimes the voices of others around me drag me into the depths of despair by casting doubts upon me.

This last is, without a doubt, the most difficult hurdle I face. When others cast aspersions upon me, the choices I've had to make, the realities of my every day life, and the tiny fraction of my life they know about. At this point, it doesn't take much to make me doubt myself. Honestly, it has never taken much, but as I struggle with finding the Light in the darkness around me, the smallest doubt can cast me into the depths of despair. There are undoubtably those who think my journey has been too long, too public, and too improbable. These are the ones who hurt me the most -- especially when they're in the guise of people I respected and liked. It is an utter betrayal to go from wishing me well to constant questioning. When a pat on the back is really a feel for the softest place to twist the knife, the anticipation is palpable. 

Sometimes I wonder where I went wrong. How should I have presented this journey to let outsiders know the truth? Did I make light of my struggles too often? Do I appear too "healthy" to be dealing with my situation? Am I too happy to have such a situation? When I make the best of my situation do I appear to be lying about my struggles? Is it possible for someone who has never experienced this type of journey to understand my journey? In dealing with some of these outsiders, I have run the gamut of discussing in-depth each step to very brief updates on a need to know basis. I am still questioned and suspected of wrong-doing regardless of the tact I take. When this is all over, I hope to be able to ask, "When did your perspective of my situation change from compassionate to suspicious? What did I do, or not do, that tipped the scales against me? Was this ending inevitable from the start, or was there a turning point I was unaware of?" Every time I think I've found peace with my situation, the knife is twisted a little bit more. Every time I think I'm handing things well, something will happen and the rules will change. I wish I had the rule-book, so I could follow it... That's what I'm good at, being pedantic: following rules. 

There are many things I would like to wish away. Some things I wish for aren't even that big of a deal, but have changed my life dramatically. For instance, after my last reconstruction, I gained a huge scar around my waist. The feeling in this area is a strange mix of numbness, tightness, pain, and just plain old irritation. This isn't life-threatening, but it has been life altering because now I find myself wearing dresses almost exclusively. While I admit that wearing dresses in the 100 degrees or more heat of summer is cooler than shorts or capris, dresses have never been my first choice as my wardrobe. Yet, the feeling of pants around my waist combined with the difficulty of using my bad arm to pull them up has necessitated the wardrobe change. On the surface, it looks as if I just chose to change my style. In reality, I have a closet full of clothing I can't stand to wear because I can't stand the sensations and difficulties of wearing them. 

Again, I choose to describe an outward sign of my struggle instead of delving into the inner scars that hurt far more. Describing the inner scars takes more courage than I have. Putting those inner scars on display leaves me much more vulnerable to further cutting words and misunderstandings. It would also make them more real and undeniable. When I look at myself I see all the visible scars, but it is really the inner scars that are invisible that cause the most pain and agony. But to enumerate them and describe them would put faces to them to haunt me further. There is no aspect of my life that my journey has not touched. 

O Master, grant that I may never seek so much to be consoled as to console, to be understood as to understand, to be loved as to love with all my soul. ~ the song of St Francis

Although I do wish to be consoled, understood, and loved, I put all this out in the cyber world so that others may identify with these struggles and feel that they have a partner in their own journey. It is in living this struggle that I hope others can find the strength within themselves to live through their struggles. 

Without the burden of afflictions it is impossible to reach the height of grace. The gift of grace increases as the struggle increases. ~ St Rose of Lima