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!