Saturday, October 11, 2014

Something ENTIRELY Different

This is not my usual blog post.  It's something I think every adult should read and take to heart.  Since last June I have been jumping through hoops in the medical community and I've been diagnosed with cancer. NOW first the cancer I have is the "good" cancer -- thyroid. I have metastases to my lungs -- again a "good" cancer. I'll be in the process of undergoing treatment for the next three weeks and it should be gone.

BUT what I think everyone should know is this: BE YOUR OWN ADVOCATE. Do NOT BLINDLY FOLLOW DOCTORS' ORDERS.  In June when my gynecologist found the lump on my thyroid, her office scheduled a thyroid biopsy for me.  When I got home I called radiology, who was going to do the biopsy, and asked them WHICH of their doctors was considered the "thyroid guru". They told me who he was. I then asked "am I scheduled with him?" and they told me I wasn't. I told them I wanted him and only him. They told me I'd have to wait three weeks as he was on vacation. I told them fine. Contrary to horror stories I'd heard and read on line about thyroid biopsies, mine was fine.

I've worked in the healthcare community since 1979, so I am aware of most of the doctors in our city (just from being old :+)  and I trust my primary care physician with my life. He told me who I should go to for my thyroidectomy.  I got on line, looked up the doctor's name (just put in the name with M.D. after it and your city).  I then knew where he'd gone to college, how many degrees he'd received, with what organizations he held a fellowship, and the positions of leadership he'd held. I also checked to see if he'd had any medical "warnings", lawsuits. Then I checked "patient comments".  And yes I went to him and he was excellent. (How many surgeons give you their cell phone number to use over Labor Day weekend?).

However before I got to have my thyroidectomy, I had to have my pre-surgery history and physical. That is when we found I had metastases in my lungs.  My primary care doc was on vacation so his P.A. scheduled a lung biopsy for me  -- which I again followed it up with another call to radiology to find out who the lung guru was and changed my appointment so it would be with him. I also told them I wanted to be OUT for the lung biopsy. I was told I couldn't be totally out because the doctor had to be able to communicate with me -- to tell me when to breathe, hold my breath, and breathe out.  THEN they went on to say "we don't usually sedate lung biopsy patients". I told them THIS lung biopsy patient would be sedated as much as was possible for this procedure.  And I was -- I received twilight sleep. The doctor was excellent (and I probably would NOT have needed the twilight sleep BUT it kept me calm).

I then had to see an oncologist and I could not believe this person I was sent to was so totally incompetent --- and I truly think he was in the beginning stages of dementia because at one time he had been the leading oncologist in our city.  SO I called his office and spoke with scheduling and asked to be moved to another doctor within their highly respected group, told them who I wanted to see, and was very pleased with the care I received.

And throughout all these months (I finally start treatment Monday) I have read. LEARN about your disease, be it something simple or something more complex but DO NOT READ THE HORROR STORIES (those little groups where people get together to compare thyroidectomies or biopsies or cancer diagnoses) -- or if you DO read them (it's easy to stumble upon them and HARD to take your eyes off them) take them with a grain of salt.  Find out as MUCH as you can by going to places such as Sloan Kettering Hospital, Mayo Clinic, Cleveland Clinic, M.D. Anderson Hospital --- these are highly respected medical centers --- and all have factual information on their sites.

In other words -- BE YOUR OWN ADVOCATE!!!  And do NOT let physicians, nurses, or schedulers "bully" you.  THEY are only human.  Research, understand, and do not ever be afraid to say "WHY are we doing it this way?", "WHY do you think I should see Doctor So and So?", "WHAT are my options?" or, as I've been known to say, "Well that's NOT what Mayo Clinic's Oncology Department says. Why do they do it such and such way?".  AND if you do not understand what they are telling you, say "Could you please repeat that in lay terms, until I understand it?".

I've been thinking through all these months, tests, and procedures, 'what if I hadn't been working in medical since the dark ages?'.  I would probably still be sitting in the office of the oncologist who jumped on imaginary skis and started plummeting down the slopes when I mentioned Colorado; or going to the endocrinologist who ignored five phone calls her receptionist said would be returned.  Again, BE YOUR OWN ADVOCATE.

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