Alright everyone! Today is the last day of 2018… I am home sick, curled up under the blanket with a fever. The year decided to end with a grand final act as I caught a cold and the results of my liver labs read more than double in just a weeks time between tests. Of Course all hepatologist offices are closed for the holidays so I can’t get an appt with a specialist till after the new year. But I made it through the year and that is truly worth celebration. This is a lengthy post that I am sure a lot of you won’t read. I also talk a bit about the more personal side of my faith. I know some of you have different views then I so count this as your warning if you easily offended. If you do read this post hopefully you will get something out of it.
Being the last day of such an eventful year it’s only fitting to make this an end of the year post. A fellow blogger accused me of disassociating from my disease through all my positive perspective posts. She stated that I should look at my situation in its fullest capacity time to time. She is right, at least in part… You do have to let reality hit from time to time. You have to cry and feeling the pain. However I found over this year that what you do with that pain is just as important as the pain itself. When your at the base of the mountain you should look at how big it is. Then you have a choice, in life you can’t turn around so you can either sit down, cry, and talk about how impossible it is or you can focus on the mountain, accept the challenge, breath through the tears, and start climbing. As you climb you will get tired… your body will throb, it will seem impossible, you’ll have to take breaks. However each time you stop for a break something amazing happens. You get to look behind and see how far you have come. So I want to share what looking back on this year reveals to me.
Well I will start off a little more than a year ago… I was sitting in a car after being told my spinal specialist couldn’t help. I was told to go on anxiety meds, do physical therapy, and change carriers. I was at a loss. I knew my pain was real. I was being told my back was messed up but if I couldn’t handle the pain there was nothing they could do. It wasn’t bad enough for surgery at my age (yea, cause he was looking at the wrong thing). My dreams of being an equestrian and working with horses were crumbling in front of my eyes. I knew I couldn’t let my biggest passion in life go… So I told people at work I just needed physical therapy. I worked in the office and prayed every night the pain would somehow get better. I would tell people at work I thought I was improving even though the truth was that the pain was only getting worse. This was actually the darkest part of my journey thus far. The people closest to me didn’t know what to say and didn’t want to hear it any more. I made the choice not to tell many people what the Dr. had said. I knew most would not understand what losing horses and my dream meant. They would think if my pain was really as bad as I said there should be no question. At Least that is what I figured.
I knew deep in my heart that horses are not something I can give up. It is more than a hobby. In horses I have found what I am good at… I can’t spell well, I can’t memorize all that well, I am not a quick thinker, I have trouble focusing, I overlook things I shouldn’t, my brain has a very hard time cluing in to life. I am not sure why… it is not cause I am lazy or for lack of effort. Everything I do is a struggle because my brain works different from most people’s’, its linked to my learning disability but not just academically. Every job, every class, every hobby… I fight tooth and nail to be average. I have always said my only strength is my stubborn nature and my lofty aspirations. I’m not a natural at anything. I mess up over and over till I do okay. Except horses…. They love me… I can read them and see them in ways many can not. I am not the best rider in the world and I never will be. Yet, I have never met a horse whose trust and respect I couldn’t gain. Horses most people wouldn’t touch I can have following me around like a puppy dog in a few sessions. I have ridden an ex rodeo bronc around a kill pen in less than an hour of working with it only to have the kill pen owner run out in a panic saying he was one of the most rank bucking stock he had ever encountered. He refused to sell him to me cause the horse was “too dangerous to ride”. He had no idea how I even got on him. I understand horses, sometimes they scare the living daylights out of me but for the most part they are my only safe place. To give that up would be giving up the only thing I have ever been gifted at. So for me, the pain wouldn’t stop me till I was paralyzed. I would go to work and tell everyone I was getting better then get home and cry or stare blankly at the wall. I would punch the back of my legs hoping for any sensation except numb tingling caused by the nerve damage. I was beyond depressed. I was determined to find something to help. That is when I found the Dr. who would give me hope.
The week I saw him was a week of relief and hell. I was told I may have endometriosis and cancer. I was excited to have a possible answer but scared half to death. I got in big trouble at work because I was trying to cope without telling anyone and made some mistakes due to being absent minded. The barn/shed I kept my horses in went down in flames and upon arrival to the scene I was told “ Kianna, you horses are gone…” Well the person meant they were gone, as in gone from the fire and safe in another pasture. The wording used caused me to temporarily think both my horses were burnt to a crisp. This was my turning point. I had a complete meltdown after my Dr. appt. but once I was done I focused my energy on the fact that my pain could get better after surgery and that I could make it till then.
At this time I started another emotional battle. That was one of not knowing how bad everything was. I had to decide at what point I would say no to treatments. I knew if the cancer was bad enough, if it was end stage, I would refuse traditional treatments to prolong life at the expense of quality of life. This was huge.. Most people told me “don’t worry until you know.” but anyone who has been in my shoes know it’s impossible to not think of the what ifs. Strangely for me this also brought me peace. I in no way wanted to die.Yet, I was forced to look at the life I had and ask myself if it had been enough. A questions most 22 year olds never have to think. My answer was yes…if it came to that… and if it ever does my life has been enough. I have laughed till my sides ached, I have loved unconditionally, I have seen many wonderful things, I had acquired the job I went to tech school aspiring for within only a few years of graduation, I have made a lasting impact on multiple people’s lives, I’ve shared my faith, and although I wish to do all these things many more times I have also live much more than most people ever get the chance to. As you all know the cancer was caught early and I didn’t have to choose between quality or quantity of life. Even still, allowing myself to think about the concept of death somehow started my healing
The only fear I had going into surgery was the fear they wouldn’t find anything. That my pain would remain a mystery and everyone would think I was overdramatic. Fear of the cancer being advanced or risk of surgery didn’t bother me much. I actually told the recovery nurse to make sure the Dr. told me what he found before telling my friend who was with me. That is how afraid I was that they might not find anything. I would look like an idiot. The nurse laughed, apparently she hears that from endometriosis patients all the time. Probably because we are forced into thinking the pain is all in our head or normal for so many years. The nurse proceeded to say “Honey, they definitely found some things. You had adhesions, endometriosis, and they sent out a few samples. The Dr. already talked to you but you probably don’t remember due to the anesthesia. He is in another surgery and will talk to you at your follow up appt.” I was back at work busting my sutures open in less then a week. That was too soon but I was in less pain a few days post-op then I had been for months. My Dr. was even surprised at how well I was walking at my one week follow up. That is when I was informed there were cancer cells but it was very early stage. I wasn’t scared but I did force myself to think about what was ahead of me. To process, to be sad, and to grieved… These are important steps in healing and although many people will tell you to be strong. You are lucky it wasn’t worse, that you will be okay…. You must still grieve. If other people don’t allow you to do so or try to convince you not to… do it on your own.
I grieved knowing my body would likely never be the same. The fatigue from the meds I would be given lasts long after treatments. Many previous patients say they never return to their pre-treatment stamina. I grieved my intellect. As treatments went on I found myself losing my train of thought, losing the ability to accurately articulate what was going on in my head. I may not be able to read, or spell, or memorize but I have always been able to understand and articulate ideas. Losing some of that ability was scary. This is sometimes referred to as chemo brain. Although the GNRH-agonists caused it the worst of all in me. I grieved the absence of friends and family who didn’t have the emotional strength to be present even though I knew full well it wasn’t because they didn’t care. I grieved over the likelihood that I will never have a biological child or be able to become pregnant after all this. I will have a child somehow I am sure of that. Yet, I think a lot of little girls grow up dreaming of getting married, being pregnant, and sharing that experience with their loved ones. The possibility of losing that dream, no matter how many other logical options there are, is still hard. I grieved how all this will effect my future, there are areas of endometriosis on my spine that could not be removed, so the pain will come back. In fact some already has. I will likely need more surgeries, hormone therapies, and always have the risk of cancer raising its ugly head again. Dr. visits will always be the norm. Every job I ever take will have to have insurance or I will have to pay astronomical amounts to insurance. I grieve the things I love. Riding my horses, talking to friends, decorating cakes… because I no longer have the energy to do these thing like I used to. I grieved the loss of my hair even though I kinda like it short now. I grieved that the choice was taken from me and I have felt forced to loose part of my femininity, This disease has stolen that from me (a hole new post for another day), I have grieved the self-righteous christians who have scolded me for not being christian enough, I have grieved the non-christians who have asked me how I can still have faith with all I have been through, I grieve for the ones whom I have hurt by not being present, I grieve for the transgenders who felt attacked by my posts because I didn’t include them when I spoke out about “women’s health issues” never intending that at all, I grieve for the fellow warriors of these diseases whom I have met and some whom have passed away while I was healing.
So no, I do not dissociate from my disease and pain. This year has taught me the importance of grief and sadness, but also of hope even at your darkest points. How grief can mold you, and change you. I am not the same person I was in 2017. 2018 changed me. It has taken many things from me, and given back many others in return. It has taught me to grieve, to be alone, to fight for my faith when I feel hopeless, to find contentment in what I have, to find peace even in sadness, to admire others who are struggling too, to find a strength to function when my tank is far below empty, and to learn that just because I can function doesn’t mean I always should. That it is okay to take time to heal, that someone is always gonna think your doing something wrong and that’s okay. That my journey is the one God put before me for a reason and it’s up to me to determine how I live it. I have learned if I choose to focus on the hope, love, contentment, peace, perseverance, strength, and joy supplied to me as I travel maybe just maybe I can share these gifts with others and that makes all that I have been through in 2018 worth it. So thank you 2018 for teaching me so many things and reminding me of the verse I have tattooed on my hip
“And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for it is when I am weak, that I am truly strong.”
2 Corinthians 12:9-11