"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
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| Southern India, Dec 2014 |
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| Ganesha |
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| 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. |
