Challenges 6-11-22

Aging, illness, disease, death of ourselves and our loved ones. Opportunities for all of us to meet the challenge of physical and emotional discomfort with honesty and then with the strength of being in that honest and sometimes raw or devastating place. 

To meet that place of discomfort with the same honest raw truth. Holding a space for that discomfort to be, to cradle that pain and not run away. The kind of pain that cannot be run away from, cannot be denied and fixed with pep-talk platitudes or distractions. 

Grief repels platitudes. I know the world will be ‘alright’ again. I know I will laugh and return to some form of my previous life. I don’t need coaching on this, I’ve lived it before. I also have lived swallowing my sadness, anger, grief and discomfort to ease the discomfort of others in the face of my distress and pain. I understand this but I really don’t want to do this anymore; to myself or especially to those I love. 

My invitation to myself and my friends is for all of us to hold each other in times or darkness. To just be with each other in a space and place of loving support. 

I’m learning that not everything that happens to us can be fixed especially by me. I’m learning to stop offering solutions, especially obvious solutions that just fill that uncomfortable airspace that hovers when someone is in deep pain. Physically or emotionally.  I’m learning to stop running, stop my racing mind of ‘fixes’, slow down and just breathe with my beloved that is in pain. I’m learning that to be with my discomfort in silence and allow my heart to hold Janet is the most courageous gift I can give her and myself. 

I’m realizing that as we age we will have this standing invitation to be there for each other in the most honest way we can. I’m also realizing that we are all entering this new learning curve at different points on this journey. Sometimes we will be the pillar of support and sometimes we will be the puddle of tears that seem never-ending. The only real truth is that we will definitely be both of these at some point in our future. 

It seems Janet and I have gotten the crash course in ‘hitting the brick wall’ these last two years. I learned so much from her steady calm but solid presence holding me as we both traversed my cancer journey. She allowed me to have and feel my pain, my discouragement, my deep grief that my life would never again be as it was. It hasn’t been and neither will Janet’s. 

The tables have turned and this time I have been given the opportunity to hold her during her dark journey, the one of a life with vision loss. Our life holds a future neither she nor I ever imagined. What I am learning each day is that our future holds the gift of ‘being’ with each other as fully as possible, especially when the world is so raw and painful.  When the world is just too fast, too cluttered with chaos and distractions. 

I’ve had a full lifetime of fixing things that I can fix or design; I love creative challenges. I also love playing hard and especially swimming in rough waters. So does Janet, we both hope to return to some equivalent of this soon. The new challenge is also to embrace discomfort and physical decline with this same focus, strength and courage. This is a new huge learning curve that’s sure to have bumps and crashes along the way. Just ask a two-year-old, it’s about getting up and doing it again. We will all get it as we help each other to be honest and compassionate with all the bumps in the road ahead.

Keeping our eye on the Mango!

Keeping our eye on the Mango isn't the easiest thing from Toronto but we will succeed! It's all about the water.  Swimming in the ocean back home in Maui and living our passion.  If surgery is mandatory to achieve this Main Goal (Mango) Janet and I are in.  Now that eye #1 is Ocean Safe it's time for eye#2 to become Ocean worthy too. Fortunately her third eye is safely at the helm and will never need surgery. 

Personally, I think Janet has paid enough Karma dues forward to earn a smooth and expedient recovery ride on this surgery. Let's all keep our fingers and fins crossed and send her eye soothing energy and love and just maybe Buddha will smile and we will be back in the water in a wink! 

However, if the waters get rough like last time with 22 injections in her eye, enduring considerable pain-both physically and psychologically and navigating Toronto in the dead of winter for 9 weeks...we are both strong bad ass swimmers and will make it to shore with a little help from all our friends swimming energetically beside us! 

We discovered 2 essential stores which also might help the upcoming journey. We bought new tinted goggles for Janet and got 3 pool swims in before today's surgery (no more for Janet for a few weeks) plus some enhanced gummies to ease the ride for both of us in the coming days. 

Today's surgery went very well and Janet is sleeping off the anesthesia which is a great start as last time barbarically she had no anesthesia. We are both hoping that with this start the trajectory of recovery will be calm smooth gliding waters to shore and home to Maui soon.

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.