Month: February 2018

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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