Living 3-4 Months At A Time

June 20, 2018

Last Thursday, June 14, I went for another PET/CT and Brain MRI. I hadn’t had a PET/CT in 4 months or a brain MRI in 16 months and even though I have been feeling great, there is always that voice in the background noise of my mind that pointedly questions :  “What if” ?   I mostly try and ignore this voice as it can be a precursor to anxiety, but I do better when I recognize, confront, discuss, accept, adapt and move on, my mantra when the ‘what if’ voice is ridiculously loud.

* ‘What if’  there is metastasis somewhere that I can’t ‘feel’?  I haven’t experienced pain, shortness of breathe, cough, headache, etc., all symptoms to watch out for, but blessedly missing. How I’m feeling is the only measuring stick I have so scans and tumor markers are validating.

* ‘What if’ the cancer has become dormant? Still lurking and hiding, waiting for an opportunity to change and grow.

 * ‘What if’ the cancer truly is gone? Yes, please, I like this ‘what if’ the best. Generally speaking, NED (no evidence of disease) and stable are as close as most medical folks are willing to verbalize for stage 4. That’s ok, I know what I know.

My PET/CT results were the best to date.  All previous metastasis is gone, and has been since last August. The primary nodule in my upper right lung now measures about 10 mm, less than .5 inch, smaller than a dime (I measured), with no metabolic activity. This would indicate that the nodule is either scar tissue or dormant. I think it’s dead and slowly being absorbed millimeter by millimeter. The slight bi-lateral pleural effusions are smaller now that I haven’t had Taxotere for 9 weeks and the brain MRI was clear. 


3 more months before we check again. In my previous life, I don’t know if I would have considered this ‘quality’ of life, the constant wondering, checking for and responding to my hyper vigilance. But even with the added challenges, continuing to live gives me time to discover more beauty, more love, more awe. This in and of itself is particularly amazing and I am grateful. 

A new piece of the puzzle is that we found I have a very low Vitamin D level.  This was the first time we had tested for this and I asked for the test after I had heard of others in the lung cancer community showing low levels. In researching, it seems like a common finding in most cancers as well as a possible side effect of chemotherapy. But, having low levels might also put one at a greater risk for developing cancer.  

Here’s my public service blast regarding Vitamin D:

8 signs and symptoms of vitamin D deficiency.

  • Getting Sick or Infected Often. …
  • Fatigue and Tiredness. …
  • Bone and Back Pain. …
  • Depression. …
  • Impaired Wound Healing. …
  • Bone Loss. …
  • Hair Loss. …
  • Muscle Pain.

8 Signs and Symptoms of Vitamin D Deficiency – Healthline

Was I deficient before I was diagnosed? I could say yes to some of these symptoms pre diagnosis and yes yes to other symptoms since diagnosis/treatment. 

Now, how do we get enough Vitamin D? And should you take D2 or D3? What about Vitamin K? How about calcium? Supplements or food? How much sun sans sunscreen?

The info is quite extensive so if you are interested, please follow the link.

For me, I’m taking 50,000 iu’s once per week for 12 weeks, then we take another blood level. Hopefully, my numbers will have moved from 15 to 50 and I can then stay with a maintenance supplement, along with making sure I get plenty of sunshine and eat my fish, cheese and eggs.

What’s next on the cancer treatment front? Continuing with Ramucirumab for 3 more cycles and then yes, re-scan. I want admittance to the “Exceptional Responders Club”.  It might take a few more years but I’m practicing pounding on the door.

Changing the conversation from ‘What If’ to ‘Why Not’

Seems plausible, and doable… without a doubt.


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