Loving my Cancer to Death – the Diagnosis

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5/11/15: My official diagnosis, resulting from last week’s biopsy 

Today I had the weird pleasure to see my hematologist to give me the results of my biopsy. He actually didn’t have them in writing, but I think he felt so bad about it that he called the lab and got a verbal  diagnosis. Apparently they are still growing tissues out of my lymph node sample for a few more days.

Now here to the result: The good news first: It’s a low-grade follicular non-Hodgkin Lymphoma (growing slowly means that there is no need to rush to do a chemo, according to my oncologist, which is the good news)

The bad news: the cancer is incurable. According to the good doctor, such cancers are easy to keep in check, by hitting them on their head with chemo when they grow beyond the current 3 cm range – and in his opinion that will need to be done several times to prolong my life, never actually killing the cancer, but reducing it. (not that I would do chemotherapy even once)

When I mentioned to the doctor that I have already started on a very healthy diet, he actually asked me what that means! “Well, I am cutting out sugar, processed foods, carbs except for complex carbs…” He cautioned me to not be too strict. They just don’t know.

The cancer is Stage III, which doesn’t mean the same as with other cancers. With non-Hodgkin lymphoma, I am told, the stages apply to the number of lymph nodes that are affected, so Stage III means that there are multiple lymph node areas on both sides of the diaphragm affected, including the abdominal area, causing the bloating that I am experiencing.  Stage IV (last stage) would mean that lymphoma is in the lymph nodes and has spread to organs (like liver, lungs…) and/or bones.

Questions I asked:

What is non-Hodgkin lymphoma? – Non-Hodgkin lymphoma is a general term for cancers that develop in lymphatic tissue and your lymphocytes get damaged. They grow abnormally and multiply uncontrollably, causing the lymph nodes to enlarge and form painless lumps called tumours. Your immune system becomes less effective. 85 % of all non-Hodgkin lymphomas are B-cell lymphomas.

What does follicular mean? – it means that cells tend to grow in a circular pattern in the lymph nodes (It just looks prettier, I think…)

What are the symptoms? – painless swelling of a lymph node (e.g. neck, underarm and groin) – unexplained fevers (not for me!) – excessive sweating (nothing beyond my slight menopause symptoms) – unintentional weight loss (NO, I would think that was quite intentional) – tiredness (not for me) and itchy skin (had itchy legs, esp. around ankles for well over a year… now that explains that). If the lymphoma starts in deeper parts of the body, such as the abdomen, it causes bloating (the reason I saw my doctor!) or the chest where it causes coughing and discomfort and breathing difficulty.

What are the causes? – Unknown of course. But immune system deficiency can contribute (HIV? Seriously? herpes virus? Seriously? or Helicobacter pylori?), autoimmune diseases (like rheumatoid arthritis) or a diet high in animal fats…Nothing resonates with me there.

How common is it? Most cases occur in adults aged 65 years and older!!!! I’m well ahead of the game here.


Author: Barbara Hoi

I have worked for 14 years with Dyslexic and Asperger geniuses one-on-one, founded Sydney Dyslexia and Autism Sydney, worked in Mosman and at a beach retreat at the Entrance and wrote three books on Dyslexia ('the Right Brain for the Right Time', 'Nurturing the Secret Garden' and 'Learning your Times Tables in Three Bold Steps'). I believe these children and adults have a great gift and the ability to become leaders in their field. But I have also found that a proper diet as well as educating and working together with parents, friends and teachers matters even more. I am now working with small groups at the Entrance Beach Retreat, helping dyslexic adults fulfill their professional dreams and parents to help develop and nurture their child's potential.

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