Thursday, February 25, 2021

Try Wait ~ ~I am Not a Number!

Try Wait

Just as we have been approaching the finish line of my treatment marathon out of the blue a rogue wave of new information hit us and sent us off on a new course.  The final results of the pathology report came back with evidence that my original endometrial cancer had in fact migrated to my lung. From the beginning my team had deliberated over the pathology findings. So much of it had pointed to classic lung cancer but something was just ‘off’. The mystery was solved by the diligent and thorough Stanford pathology department. I may not like the results but I applaud such a meticulous research team. 


I'm Not a Number

This changed my diagnosis from stage 3 lung cancer to stage 4 metastatic endometrial cancer. Gasp. Janet and I both felt crushed by this news. We’ve surfaced for air now after about a week or so of emotional shock and trauma.  I’ll say that one silver lining is that I feel physically very strong which helps me compartmentalize this information so that I can absorb it a sip at a time. I'm just not willing to be defined by a number. I am the same person that I have always been and I also have cancer, so be it.  I will continue to identify with strength and love as my guiding star, not by any arbitrary diagnosis or number. This doesn't mean that it doesn't give me nightmares at times but my ability to refocus my attention is my strongest ally. 


The Other Silver Lining

The other silver lining is that this new diagnosis wasn't discovered before I had completed my current treatment for lung cancer. Why does this matter?...Apparently the ‘standard of care’ (aka: what insurance covers) for stage 3 lung cancer is to go all out with an aggressive treatment plan because there is a possibility of cure. Aggressive treatment means radiation, chemotherapy and 1 year of immunotherapy. The line however is drawn between stage 3 and 4.  In stage 4 ‘standard of care’ is not as aggressive since the goal is maintenance and not a cure. Not as aggressive treatment means chemotherapy alone with no radiation or immunotherapy.


Listen carefully, wording and numbers = coding in our dollar centric medical/insurance system. Lucky for me the timing worked in my favor and I got the aggressive treatment plan.  Subsequent discussion with our radiologist revealed that trials are indicating that the aggressive approach for stage 4 is proving to be beneficial with better patient outcomes. This means that hopefully in the near future the ‘standard of care’ for stage 4 may change.

 
New Plan

Now what? My team of doctors which now includes a Gyn Oncologist are designing a new treatment plan. Their current thoughts are to add 3 to 4 additional rounds of chemo which more specifically target the endometrial cells plus the year of immunotherapy.  They are a remarkable team and I am eternally grateful to them.

Gratitude

Janet and I are both overwhelmed with the continuing love and support from each one of you, known and unknown. All of your hearts have melded into ours and we are confident that the strength of our combined ‘heart medicine’ is dissolving this cancer. 




Our 1000 piece Pink Cap Swimmers are finally united again! Now we just need to...‘add water’!


     

Cynthia and Lee have wrapped us in an Ocean of Love with this beautiful original quilt made by Cynthia.

 

  
Our new friends ~ 5Th graders from Charleston Day School



Perfectly timed on one of our darkest days we received an envelope from South Carolina. Out poured multiple colorful handmade cards.  A note from Eric, Janet’s hanai nephew and a dear friend read “I recruited my 5th graders to put together a good vibe package for you. I told them about you and set them loose.”    

 

It’s clear, all of your support is easing our path forward with strength and love.  We feel so blessed, Mahalo Nui Loa.

Sunday, February 7, 2021

Mid-treatment Update ~ Holding Steady


Update from the Radiologist:


Good news, my radiation treatments have been reduced from 30 to 24 sessions. Why? I can be treated more efficiently and effectively due to the shrinkage of the tumors and my larger than normal lungs from a lifetime of swimming! 

Swim for Life! 


Large Swimmer Lungs 


Intensity Modulated Radiation Therapy IMRT.

IMRT focuses on the tumor while minimizing the dose to surrounding areas. It conforms precisely to the 3-D shape of the tumor modulating the intensity of the beam in multiple small bursts. Each beam comes from the circular yellow hash marks and make a clicking sound similar to the clicking noises of dolphins. I visualize being surrounded by my dolphin friends as they beam my body healing Endolphin energy. 

Inward Journey

I have now finished 2 of 3 chemotherapy rounds and am just shy of midway with daily radiation treatments. I am delighted to report…so far so good while still being realistic that the journey may become more difficult as my body weakens under the continued stress of treatments. 

My journey continues to turn more vigilantly inward. I am learning to minutely attend to my body’s needs in each moment.  Equally important is attending to my mental process. When my body gets too out of whack with the chemical cocktail coursing through it my mind sometimes starts  spiraling downwards towards misery and hopelessness. It’s as if I am in this vehicle, my body, which is navigating all these insults the best it can while I am here managing my mental expectations and disappointments. It's the dance of knowing what I can and cannot control. 

I’m getting a crash course on the benefits of ‘being present in the moment’ with whatever is happening to my body and not taking the bait of believing it will never go away.  The only constant is change and in the throes of the storm what counts is that I know the storm will pass eventually.  Why is it that I know the ‘good times’ come and go but I don’t remember that the ‘bad times’ also come and go?  The good news is that my ‘practice’ continues to improve during this crash course intensive. I definitely have had some physical and emotional plummets these past days but my bounce back has been shorter each time.