Thursday, July 12, 2012

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


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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!