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Clearly

Seeing the blank person I became made me throw myself into damage control. This medication had taken all threads of life enjoyment from me. The mood swings – I could go from zero to sixty in seconds, at those times I did not know what to do with myself. To me, then, the cause was the situation, yet how I reacted to those situations is key to understanding just how changed I was. My non-drama attitude was replaced with defensiveness. I asked, and the guy I then dated described how intolerant and non-feeling I had become towards life and all the people and things I used to enjoy.

This awakening was bittersweet as I realized how damaged my relationships were. My close friends and family walked on eggshells around me; the chemo mutation made me do a 180 as it replaced halcyon with chagrin.

Despite this fresh knowing, the whirlwind of newfound cheerfulness abated once I resumed the 6mp. While happiness again transformed into a figment of my imagination, I did experience cool evenings and occasional farts of tranquility. Under approval from GI#6, I halved my dose in hopes it would keep me at a more constant and medial level, which it did, but I still had mood swings and the world wasn’t as colorful anymore.

Immediately, I poured out my heart and all which had transpired over those 3 days into an email to GI#6, she had met the guy I dated, therefore had a reference to all I exposed. Her response? A heartfelt, two worded “oh, wow,” all in lower caps; I felt overwhelmingly acknowledged and completely swaddled in advocacy from this once trusted source; I slept better that night knowing she had my back.

I continued to take the 6mp because GI#6 vehemently advised I needed it for fistulae healing and Crohn’s, Ulcerative Colitis symptoms control. Again, I fully realized the importance of being your own advocate, listening to your own body and loving yourself enough to just say no. I fired GI#6 and discontinued the drug after developing the last 2 fistulae, within 2 months of each other, despite having taken 6mp for almost 2 years, overlapped with biologics for over 2 years. You know what? I could see clearly now the rain was gone.

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Awakening Part 2

Day 3 of that momentous 2016 respite from chemo was even better; I woke with a positive feeling and actually wanted to get up, both out of character for who I was! I felt happiness deep within, I experienced joy, I laughed at something silly and relished the faint redolence of life slowly ebbing into my stiff senses.

I asked for hugs and actually felt them, allowing myself to be absorbed into someone else’s personal space. I was feeling joyous emotions, something besides peering through a starched gray veil, completely unable to enjoy life. I was awakening. Krista was returning.

I tried my best to express myself and relate to this new found kaleidoscope of sights, sounds, smells, tastes, daily life and discovered that my daily life could be a good thing after all. I smiled, I danced, I sang, I hugged my people, I hugged pooch. This epiphany of ethereal surrealism reminded me of a faint memory of who I once was.

The person I remembered was, in some ways, eternally different. The person I recalled was the one who bought a one way, transcontinental ticket, on a mission to find myself and forge a mental alliance with my ancestral homelands. That person was me, before arthritis, before Crohn’s Disease, before Colitis, before MAP (mycobacterium avium subsp. paratuberculosis) exposure.

Is some strange way, I viewed the person I was as a character out of a novel, wholly created in my imagination. She seemed so foreign, so far away; the person I was before diagnosis did not faintly resemble the changed, sick person I became. I wonder if we are at our strongest just before we become our weakest, possibly as a point of reference to our God given strength and perseverance. To think that I could ever return to being that person was unfathomable, yet those memories served as a reminder of things I accomplished, people I met, experiences I had, which I never would have dreamed.

I crossed paths with seemingly unreachable people, shared memories with others who have since passed and now enjoy lifelong friendships with loved ones I met on my sabbatical. We are quick to determine that the life we presently live is our eternity, however nothing could be farther from the truth. We just don’t exist only to pass into nothingness; we have a purpose, we have God given talents and while finding those sometimes seems like an eternity, if we make the effort, it pays off by way of fulfillment.

Realizing how depressed and checked out I had been to my loved ones and myself, I cried. A deep soulful, realization of tears, as all the amassed, captured gray of time and the emotionless, colorless shell I had become, washed away, down the vast drain of history; all of this chaos and complete lack of enjoyment for anything, from one small, needless drug. While I will never be able to gain back the time and moments lost, I can look forward to the times ahead.

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Awakening Part 1

Did I mention that this 3-day siesta from 6mp was life changing, a borderline panacea? This one overlooked “mistake” was my awakening! The first day without taking the drug I felt different and strange, yet in a good way. I couldn’t identify what was happening but I liked it, it was abundant and cleansing if you will.

Day #2, I ventured outside and noticed color – glorious blue skies, the opulent shade of green grass and late Summer leaves, brown/grey hues of knobby tree trunks laden with wispy Spanish moss, the bright green and hot pink of my pink polka dot plant.

Amazed with my once hidden, then renewed colorful sight, I went inside and for the first time in too long, I noticed the colors of my inside world: bright shades of wall colors, and the soft, muted flowers of window treatments from my late Auntie Evelyn. There were under appreciated works of art, from whimsical paintings to nautical wooden and sea glass objects, my favorite Fall scarf of yellow, orange, pink, all in staggering ombre. I didn’t know how to react, where to begin or what to do. So, I cried.

I remember going from room to room, seeing the contents for perhaps the first time, appreciating the beauty of life within, from simple family pictures on my dresser to the calypso colors of a wall painting. I called a friend, trying to explain what was happening. I was seeing colors for the first time in a long time and I was appreciating the effort behind the displays.

I realized what an island I had become, inhabitable to only me, sustainable to few else; I felt nothing inside therefore had nothing to give. When life lines were tossed, I usually cut the line and kept the float. Most overtures of kindness were lost on me, not out of spite, but out of having no feeling, few emotions except numbness and not knowing how to react. Only my true friends and family toughed it out; they knew who I was before chemo and that is what they held onto when I gave them nothing else.

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SMH Continuum

As mentioned, the straw with GI#6 had been weakening, let me further explain; up until recently I was taking 6mp (chemo in a pill) daily, trusting GI#6 protocol to help “manage” my Crohn’s Disease and Colitis. I ignored my body alarms to the 6mp, which included: new and extreme sensitivities to loud noises, bright lights, large crowds and being easily overwhelmed.

Those significant changes perplexed me, yet I validated their existence with the need to endure the side effects of a medication which was prescribed to “help” me. The sad thing is, I didn’t realize how dangerous the situation was until 2016, when my life began to change, yet again!

I went 3 days without taking 6mp, I simply forgot to order them (memory issues remained still). I remember going to celebrate the birthday of the guy I dated, with his family; I was physically present, that’s it. He had a large family and I was overwhelmed by all the activity and noise most families make when celebrating. Before 6mp, I would’ve been in the middle of everything, with video camera. However, this time was different.

The family dog had taken residence on my lap and I was on the couch. The family moved to the birthday cake laden kitchen table to sing Happy Birthday, accompanied by bazookas and boisterous kid cheer. The noise left me immobile; all I could do was sit and watch from across the room, with the dog on my lap, which was oddly comforting. As the family sang, I didn’t know whether to run, hold my hands over my ears or ask them to be quiet, which you don’t do at a birthday party. I remember the celebrant’s mom looking over to me while they were singing, all I could do was return her wondering yet conclusive gaze; I can only imagine what she was thinking.

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SMH!

What?

There occurs a point of dissatisfaction, when those not meant to be in our lives for long exhaust their purpose for us. GI#6 reached this point with me in 2017; the infamous tan and weathered straw was severed soon after my colonoscopy. As mentioned, I was the lucky bearer of 6 fistulae, each with Seton placements, the last two presenting them glorious selves last year.

GI#6 had completed the latest, joyful quest into my rectum; in recovery, she tried to offer encouragement regarding my fistulae assemblage, with a passing phrase akin to, “you’re seton’s are fine, people live with seton’s for years and do well.” In other words, I was just sentenced to having these hindrances for the rest of my life; apparently that’s the norm when one is disinterested in exploring options with their patients.

In my anesthetized state I managed to think, “you’ve no idea”. You’ve no idea what it takes to manage these things, and you expect me to just be okay with having them? Come on! I can’t swim in pools, oceans or otherwise be in any public water source. I can’t ride a bike or sit for long periods of time due to pain (in the buttocks), plus a few unsavory characteristics of fisulae, not to mention round the clock maintenance. When they are aggravated, there I am popping pain pills, lying on cold packs, feeling like I’m sideways on top of two camel humps.

I can only explain so much to my nieces and nephews of why I can’t do certain things. When invited to go out, my usual response was “no thanks.” No way will I accept this sentence; however, I did accept a similar sentence six years ago, when told I would have Crohn’s Disease and Colitis the rest of my life. I could insert a spoiler alert here, but you will need to stay tuned for that!

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Olympian

Gazing towards Mt. Olympus

GI#6 was the most attentive of any I had been under the care of. She called to check on me, scheduled regular office visits/labs and displayed genuine compassion. She never made me feel rushed during appointments, taking time to listen to my questions/concerns and responding while taking detailed notes. During one of the last office visits, I was having dermatological side effects from the biologic (consistent red face, patches of flaking, itchy, painful skin, inner nostril sores, toe nail fungus, rashes, folliculitis, varicose vein development) and I had developed two more fistulae (while being on biologics and chemo for 2.5 years). These side effects made me feel truly accomplished, the epitome of woman, a female golden Adonis with four toenails doused in jock itch cream, covered with band aids, daring to stand out in a hot pair of sandals to complete a distinguished look.

Being female and asking a store employee where is the jock itch cream, is a feat; meeting the perplexed gaze of the cashier while paying for this elixir births not only confidence but pinnacled levels of self esteem. My astoundingly beautiful mom has accompanied me on such trips; together, we ride the wave of annoyingly crucial pharmacy aisle runs, in wonderment of why jock itch cream is not available in economy size. My dad has learned to respond not to such conversations between mom and me. He is a genius.

GI#6 examined and explained the side effects were related to the biologic, referred me to a dermatologist and advised I make an appointment with my brilliant colo-rectal surgeon about the new additions to my fistulae family. At that point I wanted to run to my mailbox and gleefully tie one blue and one pink ribbon to its post, proclaiming to the world and all ships at sea of my new twins, one on either side; fistulae are as competitive as any Olympian.

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Revived

My experience with this different biologic had been quite favorable – it handed back my life, for 2 years! GI#6 explained it was not as aggressive as the previous biologic, but “should” work nonetheless. I liked that approach – give myself time to adjust to this new medication versus stomping my body into submission. My system, thank the Lord above, did adjust, accepting the biologic; not long after, my life threatening Crohn’s and Colitis flare went into remission!

If you can imagine living in a cave, warmed by a faint fire, tasting only dry dirt, accompanied with no energy to rise, this is how life in a severe flare is. You become so accustomed to living in deficit that it becomes the norm and you really do not realize how bad off you are. Then one day, an unexpected event happens and you find yourself with energy enough to rise and walk out of that cave, and with pristine determination to never look back.

There were a few bumps in the road during the adjustment period – I experienced severe stomach aches which lasted exactly 24 hours after dosage, during which time I could do not much other than lie in a ball for the full 24 hours. Those eventually dissipated; I developed adult acne, light-headedness, and while my energy levels laboriously increased, that increase eventually topped out; I was still easily fatigued and there was no change in the fistulae. Over time my weight somewhat reappeared, minus overall swelling as experienced with the previous biologic. Vibrant threads of hope were sown into my psyche as I realized that I was going to be ok.

Once again, I experienced the feeling of being full because food actually remained in my system long enough to be absorbed! I began to crave and savor food as part of the welcome internal rebuilding process; while I strictly adhered to my diet, here and there I would splurge and pay the price. I learned fast to not play! My diet was mainly plain chicken and carbs such as rice and a variety of potatoes; eventually I could tolerate onions, then garlic, followed by avocados and sometimes bananas and finally an occasional smearing of mayonnaise. Paul advised numerous times to avoid mayonnaise – wise man! Chips, hummus, oatmeal, dried or fresh herbs and raw foods aggravated my system; gluten, dairy, corn and soy were no-no’s. I shied from spicy foods (and still do), fresh fruit, fresh vegetables unless cooked until soft and most condiments. How I missed pickles and fresh salads, but I could have olives and hard cheeses. My tastebuds joined in the wake fest and I no longer felt like an emaciated sack of bones waiting desperately for the fall of rain.

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Possibly Not

After the month long screening process and colonoscopy in 2015, we headed to see GI#6, who declared that I had “the worst colon” she “had ever seen”. My friend and I sat down with the coordinator for the trial, all anticipating good news. The coordinator was just as chipper as we were to finally have the month of pre-screening behind and turn the page to the next chapter of my care. I gave her the electronic journal to download, she called to speak with the trial consultants about my case and, following a sudden, frantic look, asked us into another room; we waited, knowing circumstances were not looking favorable. After what seemed an eternity, GI#6 plus the coordinator came in, both of their demeanors had taken a 180. GI#6 relayed that I did not qualify for the trial – I had been denied.

Both exclaimed that they had never had a patient be denied entry into a clinical trial and the reason they were given from the pharmaceutical company what that I “was too sick.” Again, the adage of “this normally doesn’t happen” happened. We all four teared, knowing the magnitude of such a decision, and how extreme I really must be for this ruling. Apparently, pharmaceutical companies shy from the chance of having to report a death during one of their trials.

I don’t remember much after that, other than my friend holding me close, reassuring himself as much as me that we would find a way. I was stunned, he was stunned, and my team was stunned. GI#6 composed herself and launched a plan to get me better, writing a script for a biologic I had not yet tried, gathering and signing the paperwork for patient assistance with this expensive biologic, before sending us home to share the good news with my parents. Well, at least we had a place to begin now.

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Possibly

Dad Casting

In the genesis, GI#6 was a blessing; let me divulge my history of seton placements, exams under anesthesia, MRI’s, CT scans, bone density, needles, labs, and the singing side effect of anesthesia, which I am predisposed to experience. You know you’ve lived when the hospital staff and nurses recognize you in the OR. Sometimes I wondered which end they recognized more. If it was available, I had had it, plus a few chipped teeth from the tube down the throat. I had become the poster child for those side effects, which “normally don’t happen”.

The first thing GI#6 did was to order labs to see if 6mp was detrimental, shaking her head that GI#5 had never mentioned nor ordered labs specific to 6mp. She performed a thorough 2-hour exam and asked more questions than any previous GI. I agreed to take part in pre-screening for clinical trial of another biologic to treat the Crohn’s Disease and Colitis flare. Between prednisone and continued 6mp, I limped along for another month during the pre-screening process of labs, questionnaires, journaling and daily rating symptoms in order of severity. After that intensive month in 2015, the day came for my follow up appointment to begin the clinical trial!

My weight was 98 lbs. By now, I had moved back in with my parents (who are like a giant bowl of ice cream with colorful sprinkles to me). The guy I dated came to visit and take me to the appointment, where I was to begin participation in the trial medication; he was anticipating good news as much as I. Taking part in a trial had benefits if I was not given a placebo. Labs and procedures were covered, plus medication and doctor office visits. We had hopes that taking part in this trial would be the turn around I needed; I once again thought how nice it would be to live a semi normal life, yet knowing I would never return to the previous version of myself I once knew. I was relieved to not have to worry about how to pay for my care; it all made sense and I was ready to cast my reel into this open ocean.

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Casting

Dad Casting

Casting. In my awakening, the path of illumination has taken me back to my roots, returned me to my familial heritage and made me miss my parents, whom I am immensely blessed to have.

The title for this post comes from my dad; he is a survivor and fighter, and one in every sense of the words.

Way before I began school, I hung out with dad, playing under his work desk, with a social gathering of dolls and green army men, depending on if my brothers were out of school. Dad never complained about not actually using the portion of his desk allotted for his chair nor about the wardrobe of doll sized pink and lacy dresses of various lengths, plus hairbrushes, which always found their way where his chair should be.

Once, I remember hearing footsteps approaching his office and knowing they weren’t his, I froze in great anticipation of this villain daring to come aboard our ship, of which dad as captain commanded from his desk helm. I imagined him opening his collapsible brass telescope and gazing into the sunny and vast wild blue yonder; the sea breeze causing the golden fringes of admiralty attached to his navy captain’s uniform to sway back and forth, in agitation of more pirates or looming sea urchins of enormity beckoning for a cannon filled duel. I was ready and knew dad was too.

Click clock, click clock came the sound of, could it be heels? Heels across our wooden deck? Appalling. Suddenly, as I held my breath, this pair of black heels came into view from my place below deck; my eyes narrowed as I decided this was not friend but foe and rightly sentenced this intruder to walk the plank. Lucky for her, she left before I could hand deliver my sentence to the captain.

From that early age, my dad taught me how I was to be treated, loved, respected, minus trying to change me or mold me into someone I wasn’t. He and mom taught my brothers and I to be ourselves, quirks and all, and we always knew we were loved and accepted, just as we were. My parents and brothers are the ones who encourage my imagination, so you can take it up with them. But don’t be surprised if they regard you with amusement.

From the time I was a toddler, I remember dad’s love of fishing. One of my very first memories is with my dad; we lived on the coast and he pastored a church of which lots of the flock were fishermen. Two of his confidants were named Mack and Herman, these two characters fit their names to a tee. Mack was a tall Native American, Herman was an average European descendant; Mack was laid back and easy going, Herman was a man of short temper, yet both of these men in their caring ways had taken to my dad as any sane person would.

Waiting

My first memory of my dad includes Mack and Herman and the ocean, dad and I love. One morning, dad woke me early, I’m sure there was a gleam in his eyes for he and I were headed towards our Eden – the beach. For months I had seen dad working on and painting a green boat, applying letters and numbers to its hull and the day had come for him to test his Mona Lisa. Herman pulled up in his little truck, Mack was riding shotgun (I’m not sure how he folded himself to fit in the tiny cabin); together they attached the boat to the hitch, dad climbed in the truck next to Herman and dad handed me to Mack as he climbed in the driver side. I’m not sure who held my entourage of dolls that day but Mack held me while Herman changed gears upon dads clutch presses. Oh, to have a camera to capture those moments.

We arrived to the beach and were met with a heavy, thick, semi dark fog as the sun hadn’t quite risen; the tide was out and I watched as the green boat made her way to the shore. I could hear the waves crash and taste the salt in the air, but that was as close as I could get; dad cleared a place near the dunes for me and sat me down with my dolls on their maiden ocean outing. He very plainly told me to not come near the water and to call for him if I needed him, he would come to me, not the other way around. I listened and thinking back on that moment, I realize how much my dad trusted me to obey one simple task, another life lesson he was teaching me: trust. I could trust him and he could trust me, simple as that.

I don’t recall much more that day other than being mesmerized with the dark figures of dad, Mack and Herman casting nets and making their ways along the foggy shore in the green boat. I did not feel threatened or scared because I knew dad was right there. He has always been, right there.

As I’ve watched my dad live his life and deal, he has never wavered in my mind as strong and worthy; I’ve watched him cast his own net into the life he’s been given, sometimes catching the big one, other times pulling up mucky drudgery of mean spirited people. He’s always taken the high road while defending his family and his beliefs.

I’ve watched him cast his net into different circumstances we’ve faced, both personally and as a family, we never knew what lie ahead. That is courage; that is my dad. I love you dad!

Success!

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