December 8, 2015 - It's not the absence of trials

“The blessing of God is not the absence of trials, but rather the glory of God through them.”

Wow. I probably should stop right there and not type another word. Isn't that powerful? Isn't that focusing? Isn't that...hard to claim in the middle of the moment? I’ve eluded before that I often find myself in a state of entitlement expecting God to shower me with blessings, of my choosing, and blessings of my expected quantity, quality and value. It’s as if I am the only one who can define what meets criteria to be further labeled as “blessing” instead of trusting in his plan.

There is a piece of my story I have not yet shared publicly. A piece that in this very moment is still unfolding. It's new and frightening with one option being manageable, and the other option being shattering. “Blessing” is still yet to be grasped and claimed. I've been private about it because quite honestly I didn't want to utter the words for fear of what would come. I was sorting and juggling a rash of emotions that felt better left untyped. But more recently as I have been meditating on this quote, I quickly find myself shifting to the pursuit of discovering his blessing despite outcome as his glory is entirely more relevant than my longevity. My story, in reflection of and in spite of each individual sentence composing the narrative, is for him to define and for me to be blessed in and through. Facing trials with grace and peace becomes so much more attainable when I claim this revelation. But let me say, it took a very long month of November living in fear and doubt to come to this inner peace that is approaching my horizon. The story is still unfolding. This story is a reminder of life after malignancy. And this story is an example of how fear can grip you, when you don't even know the outcome yet. But I hope later this story will be a reflection of growth in my heart, no matter what the outcome.

Ron and I were standing in the check-in line at her office. Her office carried a very different atmosphere than the breast clinic. It told a different story. Wheel chairs more prevalent than not. Oxygen tanks flanking each side, instead of breast drains. The room felt less “hopeful” and more aware of current state, or so as I perceived. The line was moving slowly so Ron went to grab a pair of chairs in the now crowded space while I continued to wait. It only took 30 seconds after the young man went by with his equally young wife in the wheel chair for me to see the water pool in my vision. My heart was breaking for the occupants of this room, who did not have advocates of pink ribbons and benefit walks pushing them forward, and my heart was fearful for self and the “what ifs” that now plague my thoughts. I had spent the last month both craving this day (for knowledge and potential hopeful news) and dreading this day (for potential very bad news). I had spent nights in tears out of "what ifs" and I had spent days with all consuming thoughts. The potential had engulfed my being. I glanced up to see the sign above the check in desk: Heart and Lung Transplant Clinic. And now I was standing, after a month of turmoil, in this room, in this line, next to be checked in.

It was found during routine follow-up testing for my lymphoma of 25 years previous. You will recall I had scheduled dermatology (check!), colonoscopy (upcoming), cardiac (check!) and pulmonology testing (ongoing). Remember, we aren't simply survivors but rather in a continual process of surviving.  It was the pesky pulmonology that stumped my traversing toe.  Breathing tests suggested a restrictive process, suggestive of the development of fibrosis. As it turns out, after much reading, pulmonary fibrosis turns out to be a much bigger bird than I thought. Knowing my radiation history, it was plausible that I have developed radiation-induce pulmonary fibrosis, though there is another form, “immunologic” and/or “idiopathic”, that would have to be considered. Regardless of the cause, the physical changes are consistent: a scarring of the lung that reduces lung volume and inhibits oxygenation. While the physical changes are similar the progression and outcomes can be drastically different.

In the case of radiation induced, it is thought that the damage occurs but that the damage does not progress. Meaning, once found, you in theory could maintain that same level of damage throughout the rest of life.  Impact could be minimal or extensive, but likely not progressive as time goes on. There is no cure and it is not reversible, but can be stable. A very different picture is the idiopathic and immunologic forms, also incurable and not reversible, which can progress very aggressively to the need for a lung transplant. Survival rates are frightening and progression rapid. No one knows what causes it, why it happens, to whom it will happen to, and how quickly it will progress, but once it does it is a race against the clock to get the patient to lung transplant, assuming they are a candidate, find a match, and are chosen. Some studies report average life expectancy to be 5 years from time of diagnosis. It’s the predictability, the rapid progression, yet lack of cure or knowledge of cause that puts a crazy spin on this disease. In two words: It’s dismal.

My lung function tests were showing the restrictive process, which most often is caused by fibrosis, and which can often occur (like breast cancer) after extensive radiation to the chest. I knew this was not something to play around with so I scheduled an appointment with a fibrosis expert so we can figure out if in fact fibrosis is now in play, and if so, what was the cause (radiation induced or idiopathic as my grandfather died of fibrosis). And this is how I found myself finally standing in this check in line surrounded by lung transplant patients after a month long dance with fear. To say I have been afraid would be an understatement. The possibility of aggressive death or impending lung transplant had gripped my soul. I had spent the last 3 years in avoidance of breast cancer, only to find myself starring in the eyes of another, potentially more aggressive, beast. Very simply put, I wanted to grow old with Ron, and I wanted absolutely nothing to do with fibrosis. I wanted it off my dance card, and I wanted normalcy to return to my thoughts.

She, Delightful Lung Guru, was the most delightful person to meet. A compassionate heart, and thoughtful dialogue, an aggressive approach to help us figure out what was at stake. She agreed that the lung function tests in combination with my very complicated history would lead us down the fibrosis workup. She recognized that my radiation history makes the radiation induced form a strong contender, but the familial history with my grandfather and my historical dance with other immunologic processes places idiopathic/immunologic into play as well, and therefore we should do the work up for both.  The cause was a huge predictor in outcomes and progression. She scheduled the chest CT scan to prove or disprove the presence of fibrosis and ordered the appropriate immunologic studies to determine cause. And then she flashed me the most compassionate smile and said we will figure it out together. And that is what we are doing.

Best case scenario: The CT shows no fibrosis and we are good to go! The lesser ideal is the CT shows fibrosis and then we need to try and sort out the cause. Radiation induced should show scarring only in the areas of the lung that were radiated. If that is the case, maybe this is the extent of damage/symptoms I will face (I learned this option of “no progression” yesterday in our dialogue and it alleviated many of my fears now knowing radiation induced was a real option yet could offer some hope in its stable path). If the pattern is more varied, well, we follow this much more closely while waiting to see when it starts progressing. When it does as it almost always does, I guess we race the clock to see if I would be a candidate for a lung transplant. Cart before the horse, but boy does that cart weigh heavily in this waiting period. We expect the lab and scan results to come back sometime this week. This week, after some newly found knowledge in the appointment, feels a little more manageable and hopeful.  Now we wait.

“The blessing of God is not the absence of trials, but rather the glory of God through them.” It’s one thing for me to claim this truth in hindsight, when the saga has revealed itself and we’ve pulled ourselves up and over the hurdle and back to manageable life. It’s entirely different for me to utter this truth in foresight when the future looks undecipherable, the edges are blurry, a little less bright and a little more forlorn. I’m learning to master the former and find myself a far cry from the latter. I want to be a woman who faces trials as though they are blessings. Not after they prove themselves worthy, but before the outcome is even in view. I know there will still be sting as life sometimes brings disappointment, but I want there to be way more faith, and faith that lasts longer than a 12 hours. My disclosing is not an effort to exude sympathy, but rather encouragement through prayer to continue to run the race with head held high, heart in check, and faith as my driver. Hope is where the heart is.

In the midst of my fear, I want to transition to thanksgiving for his blessing as HE defines it. I think this would absolutely rock my world to find this perspective. And I’m working on it with each new trial....um, I mean blessing.


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