Virgin Ears, Many Ears, Too Much Information


TUESDAY

GOING PUBLIC: MY WAY

[Preclude: The thoughts below revisit events up to December 10th and mark the beginning of my public conversation starting first with Facebook and then eventually here in this journal.  These are an extract from my first public post on Facebook.]

William, and I started down the long path seeing the specialists, with my daughter, Michelle, at every visit taking notes and asking questions.  My son, Robert, also joined us at the Oncology visit with many of his own questions.  I am so blessed for my family and all of my friends who have reached out already with words of wisdom and prayers.  We are blessed with an outstanding General Practitioner, Dr. Daoud, who promptly referred me to an amazing multidisciplinary team with access to state-of-the-art treatment protocols.  Those who have experience with cancer know that initial diagnostics are done with imaging studies and biopsies.  The final pathology is not really known until after surgery.  This only means that things can change, but not enough to discourage aggressive pre-op treatments until surgery. I’m fortunate that HER2 Positive Cancer is now treatable with two concurrent antibody infusions.  These drugs attach to the HER2 Proteins on the cell wall of the cancerous cells and kill the little buggers.  You are reading correctly – the cancerous tumors are reasonably expected to shrink way.  There are many patients who experience these tumors dying back so much that when surgery comes the doctors are working using markers to guide removal of affected tissues.

The upside to the new protocol is we do not face the old carpet bombing routine of double and triple chemotherapy drugs.  I imagine you all have family and friend experiences from the past that best explain this historical reality.  The downside is that the FDA approved the use of the two new Antibody drugs along with a single Chemo Drug and only as a pre-surgery protocol.  I’m preparing to lose my hair, eyebrows and eyelashes.  The hair loss I was more than prepared for.  I’m not so happy about the eyebrows and eyelashes.  It’s not vanity mind you – it’s that these two genetic features are constant reminders of my father.  The doctors say that these will grow back – I have one wish and it is that they still look like my daddy when they grow back. Hey, a girl has the right to hope!  Here’s a little bit of medical irony.  My liver is “suspect” and as such the doctor is allowed to start the infusion treatments with a lower level of the Chemo drug so as to not stress it out too much.  They might even be compelled to drop the one Chemo drug entirely, although that would mean liver complications are all too real and we may not want to hear that news either.  But … even without the Chemo drug the new Antibody drugs are FDA approved to go forward.  The best news is that we will know within 3 cycles (42-63 days) that the tumors are responding to treatment and dying off.  Every reason to believe this will be my reality.

Many know I did not wish to do Chemo Therapy.  I was adamant.  My husband tells me I’m the most open-minded person he knows.  He might be on to something there.  I’m agreeing to the above pre-surgery protocol with the new Antibody drugs and Chemo because with it we will know that the cancer cells are susceptible and can be killed off.  This is HUGE!  The dark side of my diagnosis is that the HER2 Positive Cancer has broken out into fatty tissues (although thankfully not lymph nodes yet).  If the Antibody drugs work it means that the HER2 cells floating around in my body will be attacked and die before seating themselves elsewhere and metastasizing.  It also means that surgery to take out once infected breast tissue will be easier on me.  My doctors say that I’m an ideal candidate for minimalist surgery.  Silver lining!  For those experienced in genetic research you know that women are at high risk for future cancers if they have specific genetic markers.  These genetic tests have been requested and we wait for Insurance Company approvals.  The outcome of these tests may change the prior mentioned surgery plans, but we have high hopes my cancer is not genetically marked.  As for now, surgery may be the least troublesome of my treatment plans.

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