Timidly pullIng down the strap, buckling in tight, yes my nerves are raw, emotions high but with a feeling of optimism coursing through my veins. I knew this was going to be a hell of a ride, after all I had done my homework, read the memo’s and calculated all risks associated with this procedure. Life is filled with the unexplained, the where’s and whys, but life can also be explained through formulas, numbers, and equations the basis of fact.
In my world I live on a combination of hard facts and grey areas derived through trial and error, or accumulated experiences. Some days bring solid steadfast results, other days bring gloom and despair but mostly we consistently work within that grey area of operations, teetering between facts and gut reactions. There is something to be said about going with your gut! While floating in the cranial membrane of greyish indecision it has always worked well for me.
So today whilst arriving at Stanford to meet with Jacy’s primary doctor, I really had no questions as through many days and nights absorbing information, regurgitating said information for consumption and pondering the wealth of answers in regards to my wife’s previous, current and future care I felt fairly certain I was right where I wanted to be mentally. Oh but how doctors love hard facts….
Buckle up buttercup this is going to be one hell of a ride!
That’s all that kept running through my head..
Sitting in a room specially designed for such occasions I actually began to feel a bit nervous. I have been here before and I never really like these meetings. It is probably the basis for my need to overload on information, know everything that is happening so as to never be caught off guard. The room was filled with Jacy’s dad, step-mom and myself seated across a table from the doc, his assistant and a social worker. Jacy’s primary nurse joined us a few moment later quietly standing over my right shoulder. For the next 20-25 minutes this room reverberated with every question a father could think of in regards to his daughters care. In return every explanation the doctor felt needed to be tossed onto the table and a few that were beyond what I expected were pitched as well. Once the percentages began flying around my nerves just went numb! 20% here, 70% there, combined with scary words like mortality, fragile state, and the ever popular response of “we just don’t know”. There were also positive words such as, fighter, strong, stubborn and holding her own. Many detailed analysis I already understood; some analysis I was vaguely aware of and had appropriately deduced an outcome, while every now and again something would be said that just blindsided me. But I suppose that was to be expected for no matter how much you prepare you cannot possibly know everything. As we concluded it felt as though we all walked away understanding a little more about the who, what, where and the why of it all. I also walked away with the utmost respect for her doctor and every ounce of care she was receiving.
Now I have long said that statistics are to a mathematician what a lamp-post is to a drunk; just something to lean on.
But driving home after weeks of feeling super positive (well except for our girls little outburst last Friday that sent me into a tailspin) and feeling as though my understanding of everything was solid; driving home I felt, well, I felt heartbroken. A feeling I had no inclination of participating in, yet there it was, like my chest was going to break open! Just plain old heart-broken. Part of me wishes I had never gone to that meeting, part of me wishes I didn’t understand all that I do, part of me wishes I was just a stupid, sheep of a husband, one who nods his head yes and no whenever questions are asked. All of me wishes I could tap in for my wife, trade places with her, send her home. I have known this was going to be a long rough road, I have known that from the start. It just got longer and rougher. I have always known my wife was a fighter, she is the toughest woman I know, but she is going to have to get tougher. We are no longer talking in weeks, we are talking in months. She misses her home, her life, her ranch, her children, heck even her husband! I miss her terribly at home and all of this is breaking my heart.
The good news is these doctors know she is a fighter, everyone loves her, and the nurses all look forward to working with her. Jacy’s spirits are soaring and she knows deep inside her soul she is going to win! GVHD is no joke it is life threatening, but her toughness, her tenacity to continually do the opposite of what is expected through statistics, that will power is what keeps her going strong.
To date; Jacy cannot see due to deteriorating optical nerves in conjunction with sloughing of inner eyelid tissue, so today they tried several experimental procedures hoping to alleviate some of her visual discomfort including placing an amniotic sac over the open eyeball. Do you think that stopped her from getting out of bed and walking with me this evening? Hell no! Her eyes burn, her skin burns, she has broken blisters and peeling over her entire body! You think she whimpered once about how uncomfortable it was or used it as an excuse to get out of physical therapy? Hell no! Her stomach is upset, she cannot eat solid food because the GVHD has extended to her intestines leaving her only induced nutrition arriving through an IV. Do you think that has kept her from downing chicken soup whenever possible? Hell no! Jacy’s all over body pain is so intense she is attached to a pump delivering morphine every 15 minutes just to get through the day. Do you think that stopped her from greeting every nurse, janitor, doctor or visitor with a beaming smile, telling them what a good job they are doing, or talking about television shows, laughing together like old friends? Hell no! She can barely talk at times due to severe dry mouth and lesions inside her throat. Do think that has stopped her from happily conversing with each and every person who crosses her path? Ok I know you know the answer to this by now!
Her enduring strength, positive attitude and indelible spirit are what’s keeping this mother of four, teacher, daughter and friend going strong. I also believe some faith is in there as well. Please keep her in your heart, she believes in all of you and says she can feel the power of prayer working every day.
We have a hill to climb, it is going to be long, sometimes really hard, bumpy and frustrating, but when you feel those helping hands of spirit and faith pushing you from behind you can’t help but make that final push over the top. Then buckled up, straps down tight we can finally let go of the bar, place our hand up high and enjoy the ride together.