Up until I met my partner in life and science, Eric, I never thought that I would be with anyone who truly loved me. Now, after celebrating our 7th year anniversary as a couple, I cannot fathom growing old without him. He has had a difficult life to say the least, witnessing violence in ways that no one should ever have to experience. Yet, he is one of the most moral people I know (too honest to be polite though :p) and we have dedicated our lives together to helping others.
One of his great misfortunes is that he was near the Chernobyl nuclear disaster as a baby while also fighting off salmonella poisoning. His entire family has had some form of cancer including his mother and father. Although his mother is a survivor of thyroid cancer, his father died in his 40's of metastasized basal cell carcinoma.
Eric is now suffering a similar fate. What makes it so depressing is that we fought with multiple doctors (and a director) for 10 months before Eric even received a referral to see an expert. He kept being treated for a yeast infection despite unresponsive treatments and continued/worsening symptoms. We showed his father's medical records, his genomic information from 23andMe (Promethease Report), there were also early indications in his blood work (ESO value of 0.9), and we kept telling them we feared it was cancer because of his unique history. Several policies from the Professional Obligations and Human Rights Code laid out by The College of Physicians and Surgeons of Ontario were broken including Policy #2-15, 2-17, 7-16 in addition to being discordant to the Hippocratic Oath. Basically, they turned him away multiple times when he needed them the most.
It was not until we went to the ER that a doctor took Eric serious, but by this point, he was classified as an urgent patient and was eventually diagnosed with invasive squamous cell carcinoma stage 2, borderline stage 3. He has undergone a clinical trial (which was amazingly helpful but limited to only 2 weeks of treatment) and had invasive surgery where most of the left side of his tongue was removed and reconstructed using tissue from his arm and leg. In addition, the lymph nodes and artery from his neck (left side) were removed and replaced with an artery and nerve from his arm. On top of all this, the amnesiac did not quite work and he eventually had to have emergency surgery a couple days after the first surgery because of hemorrhaging in his neck.
Eric is now recovering, but a new growth that has appeared on the other side of his tongue. Unfortunately, Canada protocols dictate that further screening will not be done because it does not statistically improve the survivability of people. This may be true on average for the general population, but we should think of people more as people rather than numbers (and I am a mathematician). We need to consider each individual on a case by case basis, i.e., personalized medicine. All available data should be used to make the most informed decision (i.e., advantaged diagnostic precision medicine).
I could go on, but this is why I've come to you Internet. I want your help in saving my partner in life and science. Our hope is with the advantaged diagnostics information from Health Nucleus from Craig Venter's HNX Program that we can pursue the most appropriate treatment in Canada or elsewhere. Although the price of the assessment and diagnostic is reasonable, it is still far beyond our means, especially once we consider the cost of travel and accommodations in Eric's physical condition. With your support, I believe we can save a good person that is working towards contributing to the genomics-information-technology revolution for the purpose of improving the qualify of life for all people in accordance to the Hippocratic Oath so that they can have "normal" back.
Cute story: the first day after Eric's surgery, he overheard that a gentleman couldn't write with the large markers provided by the medical team. The nurses told me that Eric offered his whiteboard and smaller markers to the patient so he could more easily communicate. This is man I fell in love with, and I'm sure you will too. We plan on documenting and sharing the whole experience with you, so stay tuned to witness first hand what your support can do.
Thank you for your time and support Internet.
Live long and prosper.
- Marlene Matyszczuk
- Jolanta Puclacher
- F S
- Elaine Gill
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