What An Amazing Man!

What an amazing man! Why is it we tend to hear about people of such rare quality and their accomplishments only after the fact? It reminds me of something my son said the other day which I thought to be quite obvious and yet profound. He said, “It’s easier for the mind to remember the negative, that’s why photography is such a gift. It helps us to remember the moments that are so special”.

What better way to ‘photograph’ this outstanding man and his brilliant triumph in the face of adversity than to devise this Memorial Scholarship. The scholarship is an essay which asks each Entrant to face the devastating news of a dire cancer prognosis. To object to the standard treatment plan which almost always accompanies the diagnosis and then to defy the doctors and their diagnosis and the preconceived notion of what is ‘incurable’. However I believe the real goal here is to inspire not just the student Entrants to begin looking beyond the conventional therapy, and to utilize available resources as he did, of course that is the beginning. But the bigger goal here is to begin a wildfire of awareness among as many different groups as possible, in hopes that creative thinking would spread to the Students and the Survivors, maybe the Healthcare Advocates and the Nutritionists, and eventually the Medical Practitioners.

This scholarship is an essay challenge which asks each of us to face the serious reality of a dire cancer prognosis. Being given a diagnosis that causes you to face your mortality head on is downright paralyzing; one that challenges you physically and spiritually. But to be able to survive you must come to terms with both, or you won’t survive. To be strong spiritually you don’t need a church necessarily, or a temple it can simply be the face of your son that gives you the spiritual faith and strength to fight on. But to challenge the biological demon that wants to prematurely cut short your life you must find the will and the determination to rewrite the definition of ‘incurable’.

I like many others families; have a thread or two of cancer in my helix the longest thread in my family history is the threat of Colon Cancer. However my Paternal Grandmother lost her third fight with Breast Cancer ten years ago now, at age 80. While my Maternal Grandmother ‘Grammy’, now age 96, (with whom I’m very close), has recently been diagnosed with a Melanoma Cancer of an ‘aggressive nature’. My Grammy’s an ‘Oklahoma ranch girl’ from a different era; she has never had an IV in her veins and at age 96, I can’t even fathom her attempting to undergo something as catastrophic as Chemotherapy. Needless to say my research for alternative treatments has already begun.

I’m not your average student, you probably already guessed by the age of my Grandparents listed above; I am a 39 years old, I’ve been married 18 years and I have 3 beautiful sons ages 17, 15 and 11. When I got sick in 2001 I had been chipping away at my degree little by little over the years, and throughout my pregnancies, I was feeling good about my progress. Then, all of that came to a crashing halt when I felt my body beginning to fail me — The abdominal pain was brutal, and the other symptoms I was suffering from were not the kind any woman would want to talk about. I went to see my doctor.

I was 29 years old when my physician told me I had a chronic and ‘incurable’ auto immune disease called Crohns and like James Rhio O’Connor, I learned how to fight the kind of battle you are asking the students to write about. However Mr. O’Connor and I had to get on the job training, this is not an imaginary diagnosis for the purpose of my essay, and I have lived with this now for over ten years.

I.) I want to share my personal struggle with the students, and hopefully the Medical Profession, and what knowledge I’ve acquired so that others may benefit from my experiences. Those of you that are now ‘the inexperienced patient’, you have been typecast, the Doctor that diagnosed you slapped a label on your chart and put you on a regimented treatment that they have been using on every person that walked in with the same diagnosis, you are on a list whether you know it or not. This “protocol” comprises a series of treatments of increasingly severe affect on the body, each of which is tried in order until it either succeeds or fails – the last resort is surgery

I.) The problem here is self evident, no one person is alike; therefore we can assume that each person should have a treatment plan specifically designed for him or her. I believe this goes to the heart of what James Rhio O’Connor was trying to point out. I was first put on the regimented treadmill, or ‘protocol’ which I found out is simply a list of treatments they try out one by one inflicting increasingly severe side affects on my body, until the patient responds, the last resort if being surgery.

III.) Surgery is the worst thing a Crohns patient can do for their own treatment, patients should always avoid surgery and use it only as a last resort; even then you want to try to avoid it. If you understand that the disease is auto immune, you must also understand that surgery is going to be the first link in a destructive chain. Once there is a cut made to remove a wound in the body the immune system will only see the cut as a threat or ‘new wound’ and will set to the task of attacking the surgical sight as a new enemy. A very fine surgeon once said to me, “Once you start cutting on a Crohns patient, you never stop”. I am very thankful to Dr. Shovlin for his honesty. I was begging for surgery, after having been through the protocol listed above and all of its punishing side effects. I just wanted it all to end and his honesty is what set my feet on a new path “He said ‘I could do this for you, but you are so young and I don’t want to cut on you heather, I know you can find another solution.”

IV.)I began again with a new treatment designed by me; this time I went back to the basics I began with a dietary journal it might not seem like the most aggressive place to start but finding a safe list of foods turned out to be the best beginning and probably the most beneficial step of my recovery. This was also one of the most difficult tasks to commit to with three sons who eat anything and everything; I had to be very disciplined with my own food intake. It can also be difficult as it’s a lot of trial and error. I found that the things that I had particularly appreciated before were ‘unsafe’. Thai and Indian were my favorite cuisine, but spicy foods were out, definitely unsafe. Because foods became such a painful experience, I soon lost the desire for them altogether. I used to love a fine bottle of red wine but now I couldn’t get through half a glass, Alcohol was out. Dairy was one of the most difficult to give up, but it was out. The worst unsafe item and the moving target was butters and fats. I learned to listen to my body I could almost always tell after a single bite if I was going to have trouble, it was as if I became my own barometer, and I learned to listen. So basically I stopped poisoning myself.

V.)Next I had to find a Doctor who was able to see beyond the protocol that everyone else in the Gastro field was preaching, researching new procedures and presenting them to doctors that were free thinkers breaking out of the mould and getting off of the list was one of the hardest puzzles of my disease. I went through 6 different gastroenterologists who simply don’t know how to think outside that box. At one point I had a doctor giving me colonoscopies every 4 months, I think it was because he just didn’t know what to do with me. I realized I had a voice and I was beginning to exercise it, because I had already been through their regiment I was free to research and try other non conventional medicines. After I implemented my diet I found an IV weight based gene therapy that inhibited the making of an enzyme which produced white blood cells allowing my body to heal without suppressing my immune system or cutting out the ulcer at my ileum. I also found a great little antibiotic that surgeons use prior to surgery it works directly in the intestines to prevent infection or in my case wounds from beginning, I implemented a full time use of this as it only affects intestines.

After being on the Remicaid every 6 to 8 weeks for almost 2 years, my wound healed without having to resort to surgery. I was able to stop taking the infusions regularly and I’ve had a nearly perfect colonoscopy record for several years now.

I’ve been in what they call Crohn’s remission now for several years and I’m eager to complete my education, my student goals have changed from the 18 year old I was when I began. I’ve worked as a Certified Nurses Aid at a retirement center and a volunteer at the hospital, now more than anything I want to complete my degree. I’m not sure I still want to be the Biology Major I was when I began lately I’ve been thinking strongly about moving towards a Nursing altogether.

God forbid a prognosis should befall you, you have a lot of homework to do, don’t be afraid to ask questions, find out as much as you can.. First you need to ask a lot of questions so that you are armed with the right information to begin your research, the more information you have about your particular disease the more successful you will be should be knowledge, You should always make clear decisions, talk to many people, as many people as you can even the developers they can be reached for comment. Your decisions should be devised from a carefully thought out plan. There are many types of Cancer and different treatments for each, but what most people don’t know is that if in fact you are faced with a decision that involves chemotherapy there are also different types of chemotherapy. There are certain tests that you can take known as ‘assays’ to identify which will be the best chemotherapy process for you. Patients on average that find out which chemotherapy is best for them have a 7 fold greater chance of benefiting from treatment

(Yes, there is scientific literature documenting the correlation between test results and treatment results. The tests have been shown to identify relatively “good” and relatively “bad” forms of chemotherapy for individual patients. Patients treated with drugs active in the assays have, on average, a 7-fold greater chance of benefiting from treatment with drugs showing good results in the assays compared with treatment with drugs showing poor results in the assays. Benefits from treatment can mean both a response (temporary decrease in size of cancer) and lengthened survival.) www.cancermonthly.com/chemotherapy

In this essay we are asked to face our mortality, to ask ourselves what if we we’re to receive a dire cancer prognosis.

This Essay challenges us to rise against the conformity that would usher us towards uninformed decisions about procedures that would prematurely cut short our lives.

It rightfully challenges us to question the status quo, and all I can say Rhio your wildfire that has spread at least this far and will at least help one mother / student / and maybe someday a nurse get past this hurdle.

By: Roney, Heather Jur’ee

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