a drop in the ocean

"I am not you. I am something like you. I am nothing but you."

 - Dr. Douglas Brooks

About 6 months after Jack’s second kidney transplant, I went on a two-week pilgrimage to southern India with Dr. Douglas Brooks. It was indeed an arduous journey traveling through 20 temples (in 12 days, at all hours of the night), two schools, poverty stricken villages and cities. The “How was India?!” question was always a hard one to answer. It wasn’t necessarily a fun kind of trip (stuffed into 5 yards of a silk sari, safety and bobby pins poking out of me) although it would be a privilege to do it all over again. It was complicated, uncomfortable, demanding and depressing. It was eye opening and heart-warming. It was a world of contrast and paradox - poverty and abundance, chaos and contentment. I could go on.  Douglas best describes the trip as a “house of mirrors”.  Reflection available in every moment.  While the context was entirely different, the mere two-day pilgrimage we took to Mayo Clinic last week yielded many similar feelings and reflection was no doubt available everywhere.   

Our road trip to Rochester was intended to seek clarity, a second opinion, and a plan for the two tumors in Jack's transplanted kidney. The 2 days at Mayo Clinic were long and daunting but as you walk through you are reminded you are but a small drop in the ocean. The elevator corridor and the valet entrance were bustling with diversity and urgency.  Despite the lack of familiarity, I ran into dear friend who was receiving chemo for breast cancer.  We rarely have time back in the twin cities to connect and yet we lunched together at Mayo- peculiar indeed. We were newbies to Mayo on day one, but by day two we walked through standing up straight with our shoulders back, embracing our reality as it was.

The MRI was the highlight of the trip (for me). I went into the room with Jack and held onto his non slip socks as he was inside the MRI tunnel. I was intentional about gently changing my grip and often to remind him I was close.  He was nervous but playing cool which makes you proud and breaks your heart in the same moment. We were prepped to be in there for 40 minutes. I sat there with nothing to read, no phone, no one to talk to (I know, poor me). I found it entertaining to read every label on the cabinets... "linens", "soiled linens", and so on.  I found every label on the MRI machine to read "Seimens", "danger - don't look at this red laser”, etc.  until finally I had nothing left to do except close my eyes. Calm sank in immediately. I surrendered into the silence beneath the MRI clamor in meditation, in prayer.  I silently asked for courage, hope, guidance and clarity. I asked for health. I repeated mantra. I dug deep for all the tools I have been given. Things seemed to be going well for me... I had a steady stream of grandparents, family friends, students and loved ones - all of whom passed way too soon, that flooded my mind. I thanked and honored them all. I felt assured everything was going to be ok.  Since I had the attention it seemed of many and the powers that be, I extended my lofty request to all my friends and family who struggle with something physically, emotional or mental. (Yes, if you are wondering, you made the list).  Again, the list was long. Too long.  Another reminder of what a drop in the ocean we are. I've always felt the details of Jack's story are unique and yet, not at all.  There is something universal in all of this otherwise I wouldn't share it here in this space.  Different details and different characters are in your story, but surely you can relate in some way. Soon the 40 minutes was up and I felt refreshed and oddly Jack did too. 

We learned a lot at Mayo.  We also affirmed what a great team we have at the U of MN where our care has been for 12+ years. We stand mostly in a similar stance as before. We have 2 cysts, no one likes them, no one will say for certain (no pun intended. at all. not funny. ha.) what they are or are not without more tissue.  

The most likely next step to retrieve more tissue is either another biopsy or possible removal of the cysts (partial nephrectomy).  Mayo would like to remove them. They assure us this is “easy” and won’t compromise his kidney function.  Our team at the U of MN previously felt this was too risky given the lack of reserve in his kidney and would most likely land him back on dialysis in 2018. Hmmpf.

Unfortunately, the last biopsy we had in Dec could only reach one of the cysts - the one that both parties agree looks “normal/simple”. Conclusions had to be drawn based on the limited tissue at hand that both cysts presumably were the same.  We now know that the bigger concern is on the cyst that they couldn’t reach via needle biopsy. (You may recall the great debate about an open vs. needle biopsy). An open biopsy would have been far more invasive and conclusive. Our team opted for the less invasive approach but we were unable to gather all the facts.  The second cyst, which is tucked in near other organs and hard to reach, looks more complex and shows change since the last ultrasound. We all are smart enough to know that first cyst could likely change into something more complex and concerning.

The ball is in our court now. We will reconvene with our team at the U of M Childrens Masonic Hospital next week and decide where to go from here. 

For now, all is well.  Jack feels great. Nothing is urgent. His is healthy within his illness. However, he is without a doubt the elephant in the room. In India, Ganesha, the powerful and wise elephant headed little boy is the first deity that meets you in the threshold of any temple. Ganesa is the lord of beginnings and thresholds. He is known as the remover of obstacles. However, he often puts the obstacles there. As Douglas says "For without the pebble in our shoe, we might not ever act." Ganesha invites you to mark your boundaries, step into your possibilities. He invites you to see more. He invites you to see yourself as him. The elephant is unmistakable, obvious. He wants to make things clear. One of the few treasures I brought home from India was a statue or a murti of Ganesha. 

So, “How was Mayo?”… (thank you for asking/reading). The answer is complicated, confusing and yet we feel calm. While the journey we are on is arduous, it’s an absolute privilege to take Jack through it, and I would do it all again.

When it’s time for this to again be the focal point of our family, we will let it be.  For now, back to laundry, dishes, homework, chaos, and uncertainty.  Thank you near and wide for your continued support and presence.

Love,

Ali

“You are not a drop in the ocean. You are the entire ocean in a drop.” - Rumi

Southern India, Dec 2014

Ganesha 

Lucy, Sam, Harry, Ali, Jack
Approx 12 hours after Mayo pilgrimage, we boarded a plane to CO for spring break.
Another arduous and humbling journey - this time into the mountains.