I've surprised myself with how raw all of this feels. I think part of it is that the information keeps trickling in over several days. I'm reactive at baseline. I get news, I react to it (not always well), I process it, I pull it together, I move on. However, this trickling in of details has me processing minute-by-minute and over and over again with each passing hour/day. You keep asking me how I am feeling. And I don't even know how to reply. Some moments, I am perfectly normal. And other moments, I'm teary eyed and full of doubt. I think if I could just hear "Sally, you have lung fibrosis and it is the progressive kind", I would react to and then process that and then be back to my peaceful deal-with-it self. Or if I could hear "Sally, you have lung fibrosis, but at this very moment it's as bad as it will ever be" I would process that and dive back into every day packing-up-my-house kind-of-life. The waiting, the trickling, has me re-feeling every nuance with each new test result or conversation. Four more immunology labs came back negative. (If you are playing fantasy fibrosis that brings the score to 2 positives, 8 negatives, and a field goal of fibrosis.) I feel awful waiting to open a new result up. I feel fine after I do. With the new 4 negatives, Ron and I looked at each other and mentally gave each other a high five. It's as we had accomplished some Mount Everest Trek feat. I somehow produced a "negative" on a lab result. Wow, I am top notch!
The potential severity and implications of a bad form of fibrosis creates the raw fear. With a malignancy (caught early) you dive in with the therapy you need and hopes of response. Time may change the level of hope in either direction, but you have some level of hope when you start. It's this lack of cure, or potential for lung transplant, that has my bumble all in a jumble. Tell me I've got radiation induced fibrosis that doesn't progress, I've got it. I can do that. No problem. We all have ailments. We all know there is toxicity to be expected from cancer treatments. I just simply don't want to hear the next words we are waiting for.... what kind and how will this progress.
I've given you the straight forward facts of all of this mumbo jumbo. I've laid out the medical jargon as I know it. One friend actually thanked me for the medical lecture. That made me chuckle. I haven't yet fully dived into the emotions of all of this, but I think it is important for those of you facing similar boats in your future. If there is anything I know from sharing bad news with others or receiving bad news myself, it's that it is crucial to maintain hope. Once hope is gone, you've basically lost the ballgame. Everyone wants options. We need to know there is something else to try, something left up the sleeve for later use. We need to know that even with 99% chance of death, that there is 1% chance you will survive. That 1% can set the pace for the rest of time. It's so strategically aligned with perspective. Debbie downers tend to fair far worse in medical studies. Optimistic Olivias can drastically change time lines. The mind is the most powerful medication or procedure in use. It can cure tumors. It can bring about disease. It is the master of it's own domain. It truly can be a game changer. So when you get faced with a malignancy (or anything else detrimental), you want to hear you have options you can try and that you can choose, or not choose, to know you gave it your all. You simply want the option.With disease states with no cures and a progressive timeline, it can feel as though you've lost choice. You learn you have no say so and the hope for cure is no where to be found. It doesn't remove spiritual hope, but certainly changes the landscape of physical hope. The spiritual gets you through life, the physical is crucial for that individual moment. Too bad we don't carry around physical hope in a bottle to sprinkle on circumstance. And praise God that Christ brings the spiritual hope to get you though it. Even when you know death is coming (physical hope is gone), spiritual hope can restore peace.
The emotions being used here to describe my current situation are drastic. Meaning, I recognize I am starring at all kinds of physical hope because I am more likely to have the good kind than the bad kind of fibrosis (surely), I simply mention them for extrapolation into life's circumstances as all of us will face moving forward. We all are facing some giant. The most difficult journeys are most often the private ones not displayed on a computer screen. I am aware there are a whole set of new emotions I may feel if I get a poor diagnosis in upcoming weeks, but for the here and now, during this trickle-in-of-information time frame, I simply feel volatile. The fibrosis part doesn't even bother me anymore ( a full 4 days later; see that's volatile), but trust me, it did earlier this week. I was a basket case waiting for the diagnosis because it was an unknown. But I now know I have fibrosis. Now it is a known. I've got it. Done! Let's go decorate my Christmas tree! But I still dread opening a new test result for fear of what "chip at hope" outcome it may bring. An unopened test is an unknown. Once I get over the opening part, it becomes a known. I just want to know...whatever there is to know. Then, we adjust and move forward in some manner and time frame. Twenty-two hours of my day, I am good to go. The other 2 fluctuate based on what I just learned or what I see waiting for me to learn in my inbox. In those 2 hours I am fearful, I am sad, I am anxious, I am doubting, I am less physically hopeful. But I praise God in every moment that I have spiritual hope to keep me afloat, despite circumstance. I imagine you can relate quite well if you reflect back to one of your own circumstances. You remember well the loneliness of a diagnosis when the rest of life is moving forward around you at break neck speed. And you recall the days when you feel like you are right in the middle of a heart-breaking Steel Magnolias moment. But you also know the hysterical moment of when M'Lynn slaps Ouiser (Weezie) is coming in the next frame. There is always something coming and there is always a Truvy Jones to get you through it.
We all spend some time as humpty dumpty sitting on that emotional wall, We wobble too and fro in the middle of the moment, we teeter and we totter with the passing wind, but in the end most of us refuse to fall down. We simply find a new way to balance and find a new center of gravity. This is me, waiting for my new center of gravity. Then we grab hold and face life with this new set point. I once walked in fear of mastectomy. Now I wouldn't change that experience for anything. Lymphoma grounded me, mastectomy grew me....and fibrosis, well, we just have to wait and see what it it brings.
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