I haven’t been able to bring myself to write lately, because I’ve felt as if my thoughts weren’t worth sharing. Stuck in the wrong frame of mind—quite frankly, I’ve been in a rut!

This seems almost sacrilegious considering the circumstances. Three weeks ago, I flew out to South Bend to celebrate my birthday with all of my Notre Dame friends. Just a week after that I flew to Rome with my parents for a private Papal audience. How could it be, that after the unfathomable privilege of meeting Pope Francis, I was left wallowing in self-pity?

Here’s the simplest way I can explain it:

Pretend your attitude is like a double-pan balancing scale. There is a negative and a positive side, and whichever end is heavier determines your overall mood. Anything that causes emotional turmoil, such as worry, anger, or fear, contributes to the weight of the negative side. Conversely, things that lift your spirits are collected in the opposite ‘pan of perks’.

Living with a chronic illness feels like having a perpetually lopsided scale. Throughout the day the pain, grievances, and frustrations pile on, tempting you to give into the “dark side” and sit with your sorrows. Sometimes, when I experience a flare-up of symptoms or receive upsetting test results from my doctors, I throw in my towel and give into whatever is dragging me down. On days like those, I pay the price and end up going to bed bitter.

However, recently I’ve been coaching myself to utilize a little trick I like to call “Tallying Thankfulness to Tip the Scale.” All I have to do is deeply appreciate every little blessing throughout my day in order to accumulate positive sentiments. A game-changer I’ve learned along the way: No accomplishment is too small to celebrate!

My illness is always, without fail, worse in the evening. As the day goes on, my state of disease progresses. I am grateful for this constancy, because I can use this knowledge to my advantage. Since I know the night is something to be dreaded, I spend all morning and early afternoon filling up on positives and stacking the odds in my favor.

What are a few of my recent negatives?

1. Biopsies from a colonoscopy preformed last month came back positive for Inflammatory Bowel Disease (either Crohn’s Disease or Ulcerative Colitis).
2. Five weeks out, I have yet to see any reduction in symptoms upon completion of chemotherapy.
3. There is strong suspicion I have either a chronic cerebral spinal fluid (CSF) leak or a vagus nerve entrapment at the base of my skull, which is exacerbating my symptoms. In order to explore these options, I will be working with a team of doctors at Stanford University Hospital.
4. My great-uncle Joe passed away earlier this month. He will be mightily missed by everyone in the Fitzgerald-Petrone family.

(More importantly) What are a few of my recent positives?

1. I started attending Drexel University this quarter. Although I am working on a very light course load, I am glad to have this distraction to keep my mind busy.
2. I had the immense honor of meeting Pope Francis. As I gently shook his hand, in the Apostolic Palace, I said, “Holy Father, we love you.” He softly replied with a smile, “Please pray for me.”

   

3. I had a spectacular 21st birthday celebration in South Bend with all my frieNDs. One of my all time favorite things to do is to dance the night away.
4. My host parents, Lori Ann and Johan de Wet, from my student exchange to South Africa in 2010, are planning to visit on May 20th. It has been 5 years since I’ve seen them, but my love for them is like the sumptuous wine they make on their vineyard—“it just gets better with age”.
5. My ‘big sister’, Caroline Kozub visited from Boston this weekend, to run the Board Street 10-miler. CONGRATULATIONS TO ALL THE RUNNERS! 
6. Last week Paddy did tremendously well at MLDD service dog training. I’m proud of the great strides he is making. It is humbling to watch our partnership grow stronger every day.

   

Last Friday, Maggie and Moira drove me downtown for my final round of chemo. I was thrilled to have them there, as it made passing the time much more entertaining. While the experience isn’t particularly fun, my doctors are pleased how well I tolerated the infusions. Hahnemann’s hematology/oncology unit is lead by an extraordinary head nurse. I’m grateful to have befriended this fine woman, the lovely “Miss Mia”. Her compassion, grace, and beauty, inside and out, make her warm hugs even more irresistible! Sadly, I haven’t seen any reduction in symptoms yet. However, we remain hopeful, as Rituxan is known to take up to two or three months before kicking in and making a difference.

My last update on the medical front is crappy, literally. After an appointment with my gastroenterologist, Dr. Patricia Wong, it was decided that my persistent rectal bleeding had been ignored for too long, and an endoscopy/colonoscopy was scheduled right away. I went in for the procedure yesterday, and thankfully everything went according to plan. She found inflammation and hemorrhage towards the bottom, as well as gastritis and a hiatal hernia up top. We are still awaiting the results of the biopsies taken.

When I was originally diagnosed with POTS, in 2010, the statistics looked stacked in my favor. At the time it was believed that 80% of teenagers who acquired the disease would outgrow their symptoms in two to three years. Since then, the commonly sited prognosis has shifted dramatically. In fact, it has been reversed entirely; the numbers now show the poor health of closer to 85% of patients will stay consistent or worsen. The manifestations and ever-morphing landscape of my condition has indicated that I, unfortunately, fall into the majority of people with POTS whose state progresses negatively. As is the case with many chronic illnesses, due to a lack of effective treatment, life with Dysautonomia evolves to encompass a serious need for the ability to cope. A little more than a year ago, one of my doctors recommended we consider adopting a service dog to aid in this realm. Since then I have spent countless hours researching programs across the US. With the help of a very special friend, “Aunt” Lisa, I was led to Mark Steiber, the founder and executive director of Main Line Deputy Dog.

MAIN LINE DEPUTY DOG helps people with physical challenges or mental health concerns train their own dogs to be fully certified service dogs.

A Deputy Dog performs tasks that help you function with increased independence and greater confidence.

After much deliberation, tomorrow morning I will begin a brand new treatment regimen with a chemotherapeutic agent called Rituximab (also known as “Rituxan”). This particular drug is a chimeric monoclonal antibody against the protein CD20, which is primarily found on the surface of B cells. Rituximab destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells. This includes many lymphomas, leukemias, transplant rejection, and autoimmune disorders. While I do not have lymphoma, I have tested positively for an elevated level of CD20+ markers. Additionally, Rituxan is used in instances of autoimmunity that fail treatment with IVIG and plasmapheresis, which is the case for me.

I am comforted in knowing I am under the care of two of the most kindhearted practitioners I have ever encountered. I have faith in their work, because I know the depth of their goodness. Hahnemann/Drexel University Hospital is blessed to have physicians as talented and devoted as Dr. Styler and Dr. Heiman-Patterson.

What if I fall? Oh but my darling, what if you fly? ~E.H.

Finding answers about my illness, has been like searching for a needle in a haystack. Now, however, it feels like I’m just rolling around in that haystack. Since my return from Switzerland, I have been plagued with horrific skin symptoms that I’ve never experienced before. It began with a nasty patch of Nummular Eczema on my left quad, right aside the scar from my muscle biopsy. Then it spread to my abdomen and a small spot on my breast. While these locations were successfully brought under control by the loving care of our close family friend, the renowned dermatologist, Dr. Vicki Cirillo, next thing I know, I’m covered in hives head to toe.

There’s not one part of my body, apart from the palms of my hands and the soles of my feet, that isn’t bumpy, itchy, and swollen. We are unsure what is causing the reaction, but it seems pretty obvious that my body is screaming to be left alone by some newly introduced allergen.

In hopes of quieting down the havoc transpiring inside and emerging out of hundreds of pores, I was sent in for an emergency infusion this morning. I am still being tormented by what Dr. Rupp calls the “itchy-scratchies”, but for now all I can do is focus on deep breathing exercises to distract myself.  Today, I was reminded of the goodness that exists as a result of these types of battles. I met a new doctor, a compassionate, down-to-earth clinician, who offered to take me on a Saturday. Dr. Martin Mulders, originally from the Netherlands, shared with me a little bit of his background, including the fact his wife and son suffered from severely disruptive chronic Lyme disease. For that reason, he has a special place in his heart for Lyme patients and goes out of his way to do all he can to ease our suffering. I am grateful, particularly today, for his devotion to this noble cause.

How fitting it was for me to have met with a Hemo/Oncologist for the first time yesterday, World Cancer Day? Eerily so.

Daddy rushed home from his business meeting in New York City to meet me at Drexel University Hahnemann Hospital. Walking through the front door felt a bit like “coming home”. Just before Christmas I spent a week living on the 14th floor of the same building. In the neurology unit, under the care of Dr. Terri Heiman-Patterson, I received five days of IVIG infusions. Dr. Heiman-Patterson is the  section chief of neuromuscular disorders at Drexel University College of Medicine. She is also the medical director of the MDA/ALS Center of Hope at Drexel University College of Medicine, and co-founder and president of the board of the ALS Hope Foundation. She ordered IVIG in hopes of quieting down my autoimmunity and alleviating my symptoms. I have a great deal of respect and admiration for Dr. H-P. She is a deeply thoughtful physician, wholeheartedly devoted to the good of each and every one of her patients. She goes above and beyond her role as a clinician, often aiding patients in her ALS clinic, with things such as securing affordable housing or fighting for proper health insurance coverage. Dr. H-P is a hero in nearly every life she touches.

My appointment yesterday with Dr. Michael Styler was set-up at her suggestion and referral. We were quite impressed with my newest doctor and left his office with more hope than fear, which has become a rare occasion. Realizing I have failed more customary autoimmune therapies, i.e. plasmapheresis, IVIG, and various medications, he discussed the option of trying a chemotherapeutic drug. This has been a topic that we have danced around for awhile, but it seems as if we will formally pursue this modality in the near future.

As I agonize over the choices placed in front of me, it is my family and friends that continue to offer me consolation. A close friend jokingly teased, “I wish you could Google ‘What to say to Francie’.” Despite the fact he couldn’t find guidance for the perfect thing to say on wikihow.com he managed to come up with something to successfully ease my mind. “Don’t be afraid. Be as informed as possible and make the best decision you can. That’s all you can do.” He said, “Just remember, there is no right choice, just a good one.”

I also received valuable wisdom from a dear friend sitting at my kitchen table this afternoon. Margie and my mom have been the best of friends for as long as I can remember, and boy am I thankful for that! I have always loved when Margie would grace us with her presence. Her unique philosophies are more appealing to me than ever, as she exudes nothing but positivity. She shared with me her favorite quote, “God’s WILL won’t lead you where his GRACE won’t protect you.”

With her permission I’m pleased to pass on a few more of my favorite Margie-isms:

“Everyone is a friend until proven otherwise.”

“There’s no such thing as a stranger!”

“I think it would be a better world if we were taught to think with our heart and feel with our head.”

Amen.

Admittedly, bringing myself to write this post was very difficult. The good news is that I was able to convince the Klinik to send me home two days early, so mommy and me have happily been home for a little less than a week. My final meetings with Dr. Rupp were bittersweet. While he is hopeful that I will see significant improvement eventually….he is doubtful that day will come anytime soon. I am grievously discouraged by his prognosis. He was candid with us in saying that he found my case to be amongst his most complicated in twenty-eight years. For that reason, he is very uncertain of how my condition will progress and how positively or negatively I will respond to treatment. He sent me back to the care of my doctors in the States, but assured me repeatedly, he will be my primary physician for as long as I should wish. He vowed to never abandon me, kindly offering his friendship as evidence of his commitment. In his thick German accent he said, “I want you hold me as a friend. I will hold you as a friend. Always.”

My doctors are just as unsettled as I am about my road ahead. He envisioned years of detoxification therapies in the hopes of eliminating toxic remnants of bacterials, viruses, fungi, prescription medication, and environmental poisons from my riddled organs. All with the ultimate goal of restoring them to normal function. Dr. Rupp is confident in his ability to do so, but admits full healing is both ambitious and uncertain, and either way will be physically and emotionally demanding, not to mention, lengthy a process. In the mean time, we have to do everything we can to support my body and prevent further organ damage and nerve loss.

As I was leaving his office on my last day at the Klinik, Dr. Rupp asked if I was sure I wanted to leave. He leaned back in his chair and opened the pocket on his pants, smiling, “I want to keep you right here in my pocket.”

Dr. Rupp reminded me repeatedly during my stay, the importance of trusting in him and his goodness and relying upon him for wisdom and guidance. His less than perfect English didn’t get in the way of his more than perfect note, “If you need me, remember, it’s just a small word”….help!

https://www.youtube.com/watch?v=ljsw7c8tvhc

After three weeks of twelve-hour days at the Klinik, mommy and I decided it was high time for a change in scenery! I stuck on a Nicotine patch and we headed for Zurich. Dr. Rupp explained to me that because of mutations in my N-acetyltransferase (NAT) 1 and 2 genes my body falters in the enzymatic activity involved in transferring the acetyl groups from acetyl-CoA to arylamines. Acetyl-CoA is referred to as the “Hub of Metabolism”. Its main function is to convey the carbon atoms within the acetyl group to the citric acid cycle (also known at the Krebs cycle) to be oxidized for energy production. Without this function the biogenic synthesis of the neurotransmitter acetylcholine is severely impaired. A nicotinic agonist is a drug that mimics the action of acetylcholine at nicotinic acetylcholine receptors. Therefore, scientific explanation aside…my body, constantly deficient in acetylcholine utilization, craves nicotine as an assistant to produce energy. In the words of Dr. Rupp, my neural networks have reconfigured themselves in a way that Morphine has little to no effect on my chronic pain, but instead Nicotine does the trick. He warned me against the illusion that Nicotine will sustain my body long-term and emphasized the notion that it is only a quick-fix. However, for this weekend, I threw caution to the wind and strutted around the beautiful streets of Zurich with a patch on my hip.

I am thankful beyond belief for, at least a momentary, break from the never-ending pain and overbearing cloud of fatigue. Even more so, though, my tummy is grateful for the delicious dinner we treated ourselves to tonight at the oldest vegetarian restaurant in the world. Hiltil has been in existence for 115 years, now run by the family’s fourth generation. It includes three floors of expansive kitchens and buzzes with electric-like vibrancy. The best part of the evening was the vegan Panna Cotta and big carmel “sundae” that mommy and I split. 

Anyone who has dined with me in the past fews years knows it is rarely easy to find something on a menu that I am able to eat. As is the case with many autoimmune conditions, my body has developed pretty extensive food allergies that severely limit what I am able to digest. For this reason, I’ve been forced to adapt to an entirely vegan, gluten free, soy free diet. Hiltil was one of the only places we’ve found that could accommodate these restrictions and could do so without compromising gratifying taste. I would go as far as to say, they indulged me! I imagine this will be one of the only things I will miss upon our return home next week.

Three weeks ago I arrived at Paracelsus without knowing a soul. Today, I left the Klinik for the weekend with a heavy heart, having said goodbye to people I now consider dear friends that are finally heading home. We came to Switzerland at the start of the New Year from all walks of life and from all different places, for one reason: to regain our lost health. Each with our own resolution in mind and resiliency in spirit, we formed an alliance. We conversed over lunch in the Culinarium, crowded around the tea and water stations to take drops and pills, curled up together on the big red couch in the waiting room—all the while to cheer each other on, congratulate our progress, and, sometimes, commiserate in solidarity. These magnificent people, and our friendships, aren’t defined by any diagnosis we have acquired; instead, our bond is founded in nothing but pure empathic love. I am honored to introduce you to my friends….

Natalie, a twenty-six year old fifth grade school teacher from London, accompanied her mum, Maria, to Paracelsus. She was a pleasant fixture in the waiting room all throughout the day, as she loyally cared for Maria. It was a genuine treat to always find Natalie around the Klinik happy to talk in between therapies. After getting to know them both, it is easy to see why Natalie is so devoted to her mother. Maria is a very special woman! She never fails to let anyone go without a laugh. Her strength is undoubtedly an inspiration to her family and friends.

Amanda somehow managed to avoid my mom’s impromptu lunch-time photo shoot today in the Culinarium, so I highjacked a picture from the blog (bellairswiss.wordpress.com) her sister, Bella, has been writing to keep family and friends abreast. Amanda is a talented piano teacher from England. She pours her heart into shaping the minds, hands, and ears of her budding musicians. We all felt lucky to have Bella here for the first two weeks. It’s practically impossible to find her without a great big smile on her face and an upbeat greeting jumping out of her mouth.

Another one of Dr. Rupp’s patients, Liz, is from Texas. It seems apropos for Liz to have been named Elizabeth, traditional and quintessentially royal, as she carries her title with poise and grace. Something she also never forgets to bring along is her contagious smile. Her daughter, Kerr, now calls Montana home. If you have ever seen the majestic landscapes of the mountains out West, then you can imagine the essence Kerr exudes everywhere she goes. She glows with goodness and beauty from the inside, out. Her tender and touching hugs will be greatly missed.

May the road rise up to meet you. May the wind always be at your back. May the sun shine warm upon your face, and rains fall soft upon your fields. And until we meet again, May God hold you in the palm of His hand.