Luck o’ the Irish

IMG_0700Last 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.
Mia is the head nurse of the hematology/oncology unit at Hahnemann hospital. She has a heart of gold!
Mia is the head nurse of the hematology/oncology unit at Hahnemann hospital. She has a heart of gold!
One of the exacerbating symptoms of some forms of chemo is acne and eczema. My skin is worse than ever, but I am still wholeheartedly appreciative to Dr. Vicki Cirillo for taking care of me during this confusing time.
I have continued simultaneously seeing one of the most revered doctors in the field of osteopathy, Dr. Lawrence Bellew. Coincidentally enough, Dr. Bellew is the father-in-law of a close friend. Through his decades of success in treating difficult cases, Dr. Bellew has gained the respect of DOs and MDs alike.

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.

I feel blessed to have a gastroenterologist as kind and gentle as Dr. Wong.
I feel blessed to have a gastroenterologist as kind, gentle, and devoted as Dr. Wong.
Last week a new man walked into my life, and I’ve fallen head over heels for him. I would love to introduce you to this cuddly Casanova…Paddy.
1505620_10153216349749917_2964180778747857954_n 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.

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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.

MLDD works effortlessly to pair students with dogs from nearby rescues. Anxious to start training, I have been hounding Mark since the end of last year (pun fully intended, haha!). Nagging him incessantly about potential leads. Last week, I got an email from Mark, connecting me with To Love a Canine Rescue, a non-profit, all breed, foster based, no-kill rescue operating in Chester County, PA. That very night, my mom and I rushed out to the home of the head of TLC Rescue, Tracy, and met with the year and a half old Golden and his foster mom, Sharon. During the car ride there I turned to my mom and said, “I just know he’s going to be perfect, because we have the luck of the Irish with us today! If he’s the one, I’m going to name him Paddy, in honor of one of the luckiest days of my life, the day I met him, St. Patrick’s Day.”

Looking back, I had no idea just how lucky I had been. Paddy is one of the sweetest creatures I’ve ever met. We bonded immediately and he now won’t leave my side. My mom has started calling him “Shadow”, because all day long he follows me around everywhere. I now shower with an audience, because he insists on sticking his head through the curtain and watching. While I was in the hospital this past week my mom called to tell me that Paddy was a wreck! He ran around the house and paced my room, sniffing frantically to find me. There is nothing more comforting than coming home to his unconditional love. IMG_6782

I will be forever grateful to Tracy and Sharon for rescuing this angel and giving me the greatest gift of all. Paddy was highlighted in last weeks newsletter sent out by TLC Rescue:

1524419_203241649866682_2133828388_o-1When we met Paddy, we noticed what an exceptionally perceptive dog his is and when he met his new mom, the connection was immediate and it was clear he knew he was ready to fulfill his destiny. We’re always so very happy when our dogs start their happy new beginnings but there’s something extra special when that fresh start comes in the form of creating such an extraordinary partnership.

I encourage anyone interested in bettering the lives of our furry friends to volunteer or contribute in whatever way you can to MLDD and TLC Rescue.

http://www.mldd.org

https://www.facebook.com/pages/Main-Line-Deputy-Dog/215558125169908

http://www.tlcrescuepa.com

https://www.facebook.com/TLCrescuePAinc

Not only has Paddy stolen my heart, but he's also taken over my bed!
Not only has Paddy stolen my heart, but he has also taken over my bed!

My Fathers’ Daughter

This past Friday, I successfully completed my first round of chemo. I attribute the relative manageability of the side effects to the three Fathers I have watching over me. Late last Thursday night an extraordinary man passed into the next life and the Notre Dame community gained a powerful angel in heaven. Rev. Theodore M. Hesburgh, C.S.C., was affectionately known around campus as “Father Ted”. He was the president of the University of Notre Dame from 1952 to 1987, a priest of the Congregation of Holy Cross, and one of the nation’s most influential figures in higher education, the Catholic Church, and national and international affairs. As an adviser to presidents, special envoy to popes, theologian, author, educator and activist, Father Hesburgh was for decades considered the most influential priest in America. When he retired, after a record 35 years as president of Notre Dame, a survey of 485 university presidents named him the most effective college president in the country.
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My dad continually tells me how proud he is of me, but more than anything I hope that each time he has that thought, he is proud of himself as well. I am who I am because of him. I’m glad to be a daddy’s little girl, and know I will be until the end of time. He is my rock, my guardian, my idol, and my deepest love. All that empowers me is, undoubtedly, a result of graces from God and unconditional love and support from my family. Unlike most kids, who outgrow their belief that dad is a superhero, I have only grown stronger in my conviction that my dad is “Superman”. With God ever-present, Father Ted above, and daddy here to hold my hand, I trust the upcoming treatments will be bearable…and pray they will be worth it.
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Whatever It Takes

Our dear friend, Father Dan, came to our home tonight to preform the sacrament, Anointing of the Sick, for me. My family is grateful for his prayers and friendship.
Our dear friend, Father Dan, came to our home tonight to preform the sacrament, Anointing of the Sick, for me. My family is grateful for his prayers and friendship.

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.

the “itchy-scratchies”

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.

Dr. Vicki Cirillo, a close family friend and brilliant dermatologist
Dr. Vicki Cirillo, a close family friend and brilliant dermatologist

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.

World Cancer Day

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

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Dr. Terri Heiman-Patterson

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.

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Dr. Michael Styler

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.”

Margie arrived at our house in her very best "Swiss" hat. Fashionable and fabulous as ever!
Margie arrived at our house in her very best “Swiss” hat. Fashionable and fabulous as ever!

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.

A spoonful of medicine, a pocketful of friendship

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

Through the looking glass….

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It was routine for me to start my day at the Klinik before the sun was ready to make an appearance. As the saying goes, “the early bird catches the worm.”
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The Schöndorf Current-Therapy feels similar to TENS (Transcutaneous electrical nerve stimulation) apparatuses I have used in the past at physical therapists for sports injuries.
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There is the Schöndorf electro-therapy machine, sending small electric currents through me via the pads on my chest and back to stimulate nerves and increase lymph and blood circulation.
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The therapist would always welcome me onto the table for Infrared Light Therapy by saying, “follow me to the beach.”
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While waiting for my DMPS infusion to drip I did my reading “homework”, prescribed by the man who teaches Bio-Feedback or TANS Therapy. This method of measuring heart rate variability is useful in training yourself to control your Autonomic Nervous System, by balancing the parasympathetic (relaxation) and sympathetic (fight-or-flight) branches.
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Here is where they preform the less-than-desirable Colon Hydrotherapy, also known as a “colonic.”
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I met with Dr. Rupp daily at this desk, his throne.
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On Dr. Rupp’s table I received my two, daily stem-cell injections. He was incredibly adept with the needles, always sparing my backside as much pain as he could.
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The Culinarium only serves foods prescribed by Dr. Rau’s healing diet. For that reason, I was able to enjoy nearly everything offered at lunch.
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I sat wrapped up everyday for my fifteen minute inhalation therapy session. Thymol oil was used in this case to support my thymus gland, an organ of particular importance to the immune system.
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Tiggy, the “Haus therapist” struts around the Klinik as if he owns it. However, he relies on patients and staff to open the automatic doors for him.
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The Culinarium is where all the doctors, staff, and patients enjoy delicious and nutritious lunches.
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The green cross symbolizes the entrance to the “Paracelsus Klinik Apotheke”. I made many, many visits to the pharmacy during my stay.
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There is a beautiful, serene sanctuary for the patients on the third floor of the Klinik. The great, big windows allow for wonderful sunlight to soak you as you rest and enjoy the scenery in the “quiet room”.
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My veins were well cared for by all the kind-hearted nurses during my daily infusions and Ozone blood therapy.
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It took a few sessions of nose therapy to get accustomed to the sensation of the insertion of homeopathic remedies into my nasal cavity. At first it felt like getting water up your nose while swimming in the pool.
 On the days when I was most restless, lying down for Pulsating Magnetic Field Therapy was a huge annoyance. I would be anxiously counting down the minutes until the machine would signal completion.
On the days when I was most restless, lying down for Pulsating Magnetic Field Therapy was a huge annoyance. I would anxiously count down the minutes until the machine would signal completion.
The Paracelsus Klinik in Lustmühle, Switzerland is a remarkable place of healing. I am grateful to have visited such a fine institution, founded on genuine principles consistent with nature's magnificence.
The Paracelsus Klinik in Lustmühle, Switzerland is a remarkable place of healing. I am grateful to have visited such a fine institution, founded on genuine principles consistent with nature’s magnificence.