Cautiously Optimistic…Secretly Overjoyed

June 7, 2017

My PET/CT was last Friday at 1:30 and Vignesh called 40 minutes after we got home with news.  He was excited to tell us that the scan results looked good! He didn’t have the radiologists report but he’s a great doc and from his standpoint, we had news to celebrate and he wanted us to know this going into the weekend..what a special man.

Paraphrased from the radiologists report: Pleural effusion is diminished, pleural thickening has decreased significantly and is no longer visible or measurable hyperbolically, meaning no SUV uptake which means the cancer in this area is not noticeably active. I no longer have any FDG avid lymph nodes,  my tumor has decreased in size and SUV uptake is down overall.  My tumor markers have markedly reduced, one falling into the ‘high normal’ category and the other slightly outside the normal range.  These are the best tumor markers to date.  My blood tests are great. WBC, RBC, platelets, etc., are all within normal range and Vignesh said ‘Whatever you’re doing…keep doing it!’

Side effects remain the same, mouth, tongue and throat sores, loss of taste, occasional fatigue, especially during my ‘down days’ and continued hair loss. I did have another issue with GERD after my last treatment so last week I had an upper GI series to make sure I didn’t have any bleeding ulcers or overt signs of problems in my esophagus or stomach.  All was normal and Vignesh thinks I was having a bad reaction to the steroid I was taking the day before, during and the day after my infusions.  So no oral steroid this time, we tried IV steroid just before my infusion yesterday. Vignesh also suggested I take L-Lysine (essential amino acid) to help combat the mouth sores as well as sucking on ice and I’ll be keeping the CBD and anti-nausea meds on hand.

I will stay with this regimen unless I have an increase in symptoms or the chemo becomes toxic in which case the dose will be reduced or stopped. Until then, we expect reduction/disappearance of the tumor as well as attaining NED (no evidence of disease). I visualize this every day.

Enough medical speak?

It’s been almost 11 months since my diagnosis and life has most certainly changed. When asked by people I am meeting for the first time what I do for a living, I say – ‘Managing cancer. It’s a full-time job.’ This limbo can be challenging. The lead up to scans causes anxiety, the loss of taste is disheartening and then there’s the hair thing but cancer also brings amazing opportunities if one chooses to see them…I do my best to see them.

I LOVE Spring/Summer, I’m a Leo sun girl and this weather is glorious, I am blessed.

xo

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