1 Month, 2 Islands, 3 Hospitals, 17 pounds....the Edge of the Raft

Who would have thought after 6 months of intense chemotherapy and radiation I would return home strong and ready to start up my life only to end up at the ER in less than a month. The twist and turns of this ongoing journey. Everything went so seamlessly while under the care of my team at Stanford, somehow I thought it was going to continue, I would just get stronger and back to my old self, swimming in the ocean and living my life with Janet on Maui. Apparently not so. 

 
It started with a dry cough followed by shortness of breath then extreme fatigue and weakness. Side effects of radiation don't always show up immediately. I was starting to experience inflammation in my lungs due to the radiation and chemotherapy, a condition called pneumonitis. When confused and misdiagnosed with pneumonia the outcome can be gravely serious because the treatments differ completely. 
 

June 28, Janet and I went to the ER at Maui Memorial Medical Center (hospital) and I was immediately admitted. The rest of the story at MMMC is a downward spiral over the next 2 weeks. Regardless of what we said all three hospitalist doctors at MMMC they would not let go of their firmly held diagnosis of pneumonia. After one week of administering heavy antibiotics I was sent home, the doctor flatly refusing to even take an x-ray or scan to check if my lungs were clear. Fortunately, I had an appointment with the pulmonologist the next morning, one look at me and he sent us directly back to the ER for more scans and x-rays which revealed my lungs were in seriously bad shape. Still insisting it was pneumonia the doctors continued with even stronger antibiotics for another several days as the inflammation continued to increase and fill my lungs. Time was of the essence and it wasn't on my side.

                                  

                                       

This is when I started to lose touch with myself. I had a dream that my hospital bed slid under a Mac truck between the wheels, we were paused at a corner and I was so afraid that the truck would turn the corner and crush me. I awoke in a drenching sweat that smelled of terror. It felt as if my shadow was growing longer and my body was a ball shrinking smaller and smaller. Janet could see it in my eyes and we were equally terrified. “I’m losing it Janet, I can’t keep holding on.” 

Janet, my beloved warrior wife flew into action. She called Stanford and got our competent team of doctors to personally call the MMMC doctors and persuade them to change their stubbornly held incorrect diagnosis from pneumonia to pneumonitis. Thankfully they finally listened and the diagnosis and treatment plan was changed immediately. Massive amounts of steroids were administer into my rapidly failing body. Again, Janet flew into action and got me out of MMMC and medevaced/airlifted to Oahu where we were met by a waiting ambulance and whisked directly to Straub Hospital, I was in acute respiratory failure. 

The difference in doctors and care was immediate. "From 3^rd world to 1^st world medical care", and that was a quote from a doctor at Straub (I kid you not). I was now in the competent and cooperative hands of the doctors at both Straub Hospital and our team at Stanford for another week of intense steroids and close observation. We made it, but without Janet, my warrior wife never relenting against all the blockades of the doctors at MMMC, I might not be here now.

Before we could go home I needed to regain enough strength the make the flight back to Maui and be independent of the need for full time care. I was next admitted to Rehab Hospital of the Pacific, hospital number 3.  There I improved enough to be able to sit, stand, bath and dress myself and walk up those 16 stairs to our house. Before Rehab Hospital I could do none of these things. Less lung capacity in addition to 17 pounds of muscle mass loss in 3 weeks turned me into an instant invalid.  I can’t begin to tell you how shocking and humbling that experience was. 

The Physical Therapist told me that for every day in a hospital bed it will take 2-3 days of recovery, that’s 2-3 months! Each day home has been a lesson in slowing down, becoming more finely tuned to my body's needs and pacing myself. Convalescing, another life passage of aging and illness.

 

Being so close to the edge of the raft all the noise and chatter of life becomes insignificant. What’s left? Love of Janet, love of Ohana, family and friends, and the love of the incredible beauty of a world that I am embracing with every life-giving breath. The gratitude of living. 

Finding My New Normal

Scans came back clear with only some lingering inflammation and scar tissue. I’m now turning the page to begin regaining my strength and finding my new normal. It’s time to come back home to Maui and back in the ocean again. Janet and I are both more than ready to rejoin our lives again. 

What will be our new normal? It’s been 6 months of extremes. When swimming in rough waters Janet and I have a saying ‘Just put your head down and swim’ because there is no other option until we reach calm waters or shore. Then it’s ‘Wow! We made it!’ 

     

Now that I am on shore the past 6 months of extremes are tumbling around in free fall inside my psyche. There were times when I was so sick or so fatigued that even talking was a challenge, but also times when my heart was overflowing with love and gratitude for everyone and the preciousness and beauty of this life. These are the times I hold most dear. 

I have felt carried through this entire journey by all of you, my loving Ohana, and the entire medical team at Stanford. There have been so many silver linings.  My wish is to carry all of you and all of my lessons into my New Normal…..Loving Kindness, Honesty, Deeper Compassion, and the Inner Strength to keep my focus aimed towards Love, Beauty and Laughter.

 

   

Tick-Tock

I’d say the hardest part of this journey now is weariness.  I’ve completed my first round of four new chemotherapy treatments. One down with 3 to go with 3 week intervals between each one. It generally takes 3 weeks for a body to recover enough to undergo another treatment. Yes, these chemical cocktails are strong. Although I am tolerating these treatments very well and tend to feel like myself again within 5 to 7 days my blood doesn’t always correspond to how I feel and lags behind. It was a 5 week wait before I could start my new treatment plan because my body needed more recovery time from my previous treatments. 

Did I say ‘I am not a number’ last time? Hmm, I might need to reconsider that one. Numbers are everywhere: blood counts, treatment intervals, recovery time, future appointment dates.  Tick-Tock; I know that in the big picture these months of treatments will diminish but right now it feels interminable. I want to ‘Live Life Now, In the Present Every Minute’ but honestly, I keep feeling like I am in a waiting room for my life to begin again.  Patience grasshopper! The truth is…I Am living life now and I Am weary, it’s all part of the dance and this too will pass and make the sweet times all the sweeter! Thank heavens I have my beloved Janet and my inner voice to help me weather these passing storms.

The Antidote

Just as in winter there are beautiful sunny days between storms! Our motto of ‘Play Hard Now’ comes out full force on these days.  The trick is to be in the storm when we are in the storm and then when it is over…let it go! Don’t fall into reliving the misery, it just prolongs the storm. 

                                  

Spring has started to show her colors in the beautiful flowers and trees everywhere. Natural beauty is always a balm to our souls.

 

Humor and play is our favorite lifestyle. Why not! Janet and I decided we would creatively collaborate to join the Spring Bloom with a splash of color!

Staying open to being spontaneous and flexible to windows of opportunity. If we have to wait 3 weeks in between treatments why not pop home for a short respite to rehydrate! 

If all my ‘numbers’ align and the universe provides us a window to fly home, for a short spell we’ll be seeing our Maui Ohana soon! 

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 ~ 5^Th 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 5^th 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.

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. 

Latest Scans~News to Celebrate

Hurrah! The treatment is working! All you need to see is in the yellow circles, the glowing white areas are the tumors. The image on the right is when I was first scanned on October 27,2020 compared to the image to the left which was taken January 12, 2021 just last week.  The chemo-cocktail appears to be a good match for the tumors and they are disappearing. 

 

Current Scan on Left: 1/12/2021    Original Scan on Right: 10/27/2020

This makes the journey ahead all worthwhile, I actually have hope that I will be part of that 30% ‘cure-rate’. Fingers, toes and fins are crossed! 

We have enjoyed our respite of hiking around Palo Alto and exploring the campus but now it is time to return to our nest for the next 6 weeks. 

 

The next leg of this journey, aka the chemo+radiation marathon begins on Tuesday January 26th. I am sure it will feel interminable at times but the knowledge that the treatment is working and that there is a finish line on March 8 makes it all possible. 

 

Both Janet and I are ready to dive in and swim our way through as the cancer dissolves in our wake. 

 

Keep this image of us in your minds and hearts.

Hair Today ~ Gone Tomorrow ...Managing Side Effects

Each part of this journey is opening the path to the next adventure or challenge. 

I’m realizing that the most important part of this entire journey is not the cancer but how I approach each phase or aspect of it. It’s about being true to myself every step of the way and recognizing choices as opportunities for empowerment. If I listen to the cues that are whispering inside of me I have valuable opportunities on this cancer journey. 

My current creative challenge now is staying ahead of ‘side effects’. They range from overwhelming tsunami’s to just huge crushing ‘Jaws’ waves. I am learning to either dive under the wave if possible or stay on the crest of the wave ahead of the crushing white water that follows. I also know that even the best swimmer cannot always survive without the aid of a jet ski or helicopter, i.e. drugs and advice from doctors and nurses! Toughing it out with Tylenol when a tsunami is barreling down is only foolish pride and guaranteed extended pain. 

So, what to do with piercing headaches, nausea, racing electrical currents, crippling constipation, rapid hair loss, numbing foot neuralgia, bruised veins in my arms, etc. First I focus on being aware of their approaching magnitude and velocity and then chart a course. It’s all in the timing. Quick, take the ‘antidote’ drugs ahead of the crush or is this one that I can handle some other way. Walking helped the foot neuralgia and the exercise also helped move the chemical cocktail pulsing trough me and out the door. Having a port placed in my chest to save my arms and calm my anxiety. 

Hair loss is not the result of all chemotherapy but in my case, it is. Being blessed with a very thick head of hair revealed some interesting choices and challenges. 

I was fascinated by the initial density of hair that showed up on my brush or fingers, not to mention the shower floor (I devised a special grill over the drain to save the plumbing!). 

 

Fascination then turned to fun with the portable vacuum which created perfect soft white birds’ nests. While visiting our dear friends Laura and Amy in Point Reyes I discovered a fairyland of beautiful scenic choices on their property for my hair-nests. 

  

I plan to return them in spring for any enterprising bird who might want an insta-nest. 

 

Staying in front of the wave of hair everywhere was fun thus far and a short haircut to reduce my shedding mess was a relief.  While I was having so much fun I didn’t notice the wave was quickening under me as the rapid hair loss continued and my scalp was shining through. 

Suddenly I was looking at the reflection of my dying father from 30 years ago in the final stages of his cancer. Crushing memories gazed back at me each morning as I gazed in the mirror. I couldn’t escape my face or his. I was tumbling in the whitewater of grief, fear and loss. This morning with Janet’s loving help I was able to once again say goodbye to my father and regain sight of myself and my journey. 

As Janet shaved my head I could feel her loving hands guide me back up into clear water well ahead of the crumbling wave. I'm back and ready for whatever comes next.