A Week of Change (ending without a cane)

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On Tuesday, May 22nd I walked into UCSF at 6:00am for an awake brain surgery unsure how the operation would go and in what condition I would wake up. A week later I walked without a cane to Zachary’s Pizza in Oakland to eat out at dinner with my family. Grappling with this concept, finding words to describe how this past week has felt, is difficult.  Surreal still seems to be the closest fit, intertwined with immense gratitude and a deep sense of privilege. These emotions have been brewing throughout the week, yet with my mind feeling in somewhat less pain (…at 5:00am of all times), I feel the need to share. A lot of people have called me resilient…strong…but to attribute this week of change to any individual attribute negates the reality of the vast community who truly helped me get to where I’m at today.

My Surgeon, Dr. Hervey-Jumper, and his surgical team:

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Dr. Jumper is not only an incredibly skilled surgeon, but an amazing healer, communicator, and person. His candor, consistent sense of calm, ease of listening, and humbleness to treat me as a partner in my care defined my experience before, during, and post-surgery. Most importantly, he was someone I could place my complete trust in. In our first appointment two months ago he spent over an hour talking with me about his medical opinions, the surgery, and my concerns. He replied to several emails and calls answering questions I had likely asked a hundred times. The day before my surgery he met with me again not only to walk me through each step of the operation, but also to help me clarify my own risk tolerance and expectations for the surgery. Finally, he came into the pre-op room just before my operation to make sure I was feeling okay and understood everything that was about to happen.

This was only my second brain surgery, so I don’t know what “normal” is, but everything Dr. Jumper did before my surgery helped build such a strong level of trust that allowed me to enter the operating room feeling content. I was nervous I would get anxious as they woke me up during the surgery to start the brain mapping process, but I remember hearing Dr. Jumper’s voice and feeling at ease (…the sedative probably helped too). The way he communicated with his team throughout the operation was like a conductor guiding a symphony. Despite being solely focused on my brain (…thankfully), he never lost sight of me. In the most stressful moments of the operation when I had a seizure in my arm or was having trouble keeping my right eye open (…which I later found out was due to lidocaine), he took the time to calm me down before continuing with his goal to remove as much tumor as safely possible.

I still don’t think I want to become a surgeon (…we’ll see), but Dr. Jumper, beyond his achievements in skill and research, epitomizes the immense impact a surgeon can have on a patient through building mutual trust, respect, and partnership in care.

He has officially joined my Jedi-league of doctors!

***I also need to give a shout-out to Sunny and Dr. K, the two Anesthesiologists, who in the span of just a few minutes pre-surgery established such a great level of rapport that I trusted them to keep an eye on me throughout the operation. I never once saw their focus deviate, and despite me being just one of thousands of their patients, they made me feel like I was their sole priority.

UCSF ICU and 8 Long Nurses and CNAs:

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James, Oliver, Jax, Luchesie, Mike, Jim, and Andrew. These were the seven nurses who defined my recovery and made it possible for me to leave the hospital just 72 hours post-surgery.

In my time being cared for and working alongside nurses as a patient, EMT, and medical student, I’ve seen how easily it is for nurses to be stretched to capacity due to their demanding responsibilities.

The seven nurses I listed above had the same intensity of work. Their pagers were going off non-stop, but despite everything they had to do, they did it with a level of passion, healing, and care unlike anything I’ve experienced before.

My time in the ICU was a process of reorienting myself and assessing how my body changed following the surgery. There were temporary lost sensations, coordination challenges, and more IV’s, pumps, and tubing I could have imagined. With the pain, and necessary medications, I was pretty out of it too. I wasn’t sure if I was feeling the way I was supposed to or if the surgery had gone well. While I wasn’t fully conscious to interact with my first nurse, Oliver and Jax later navigated me through all my concerns and questions. Even more meaningfully, they took time beyond their hourly neurological exams to keep me company. In the most disorienting part of my hospital stay, their friendship gave me a deep sense of comfort.

On the inpatient floor at 8 Long, Luchesie, Mike, Jim, and Andrew were key to getting me up and moving. Luchesie’s bright personality and kindness made me feel immediately at “home” in my new hospital room. She even worked to get me my own room so that my large family would have space to visit. Mike, instilled in me the confidence to get out of bed and use the restroom by myself for the first time. (…the fact that he was the size of a linebacker and would catch me if I fell might have helped too). Also, when I had another seizure in my arm, Mike’s natural calm kept me at ease in recognizing that everything I was experiencing was part of the natural recovery process. Jim, got me to take my first lap around the hospital floor and eat my food sitting in a chair rather than the bed, which helped me make huge strides in increasing my energy and mobility. Finally, Andrew, during the tornado of people streaming in and out of my room to discharge me from the hospital, went out of his way to slow everything down to make sure I was doing okay.

Beyond these specific aspects of my recovery that I remember, I feel incredibly privileged to have had nurses who despite attending to countless patients, made me feel human, safe, and cared for. I strongly believe that physical and mental health are intricately linked. These nurses were not only experts in caring to my physical needs, but their genuine kindness guided me to a mental state where I felt the will and energy to recover. I am grateful to have been their patient, and I also cannot wait until I am at the point in my medical education where I can learn from these true healers.

My Family:

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There aren’t really words to capture the impact my family has had on me throughout this process.

I asked my surgeon for one week off between finishing my first year of medical school and having the surgery. During this week, I visited my Uncle and his fiance, Laura, in Seattle and we went to the San Juan Islands. There, I got the opportunity to cross off one of my bucket-list items and saw a pod of wild Orcas. I also got to spend a few days of reflection in what is one of the most serene and beautiful places I have ever been to.

Afterwards, a few days before my surgery, my Mom, her fiance Mark, my brother, his fiance Kate, my sister, and her fiance Chris (…I know, a lot of weddings!) came out to California. We went down to Carmel, hiked in Big Sur, and kayaked with Sea Otters! Both these trips filled me with more love than I could describe and helped me go into the surgery feeling completely at peace. I am beyond lucky to have had my family with me before, during, and after my surgery because they are the ones who truly fuel my will to recover so that I can create even more memories together.

I’ve also been incredibly privileged to have my Mom and Mark stay with me after the surgery first in San Francisco and now in Oakland. For them to uproot their lives to help me recover out here in the Bay Area is a gift I’m not sure I can ever repay. There is not a lot I can do for myself in this most immediate recovery period, and while my stamina increases each and every day, I quickly hit my limits. I am beyond grateful to have them both here to help me navigate this journey, and also so thankful to our communities, East and West, who have provided such incredible support.

What’s Next?

Every day I progress, slow and steady. Each day I start feeling a bit of myself returning, but I also quickly hit a wall. As the weeks and months go forward, I’ll need to embrace the “patience” aspect of being a patient.

Today, the UCSF tumor board met and on Monday, June 4th I’ll meet with my neuro-oncologist to get the results of the surgical biopsy samples and their recommendations for further treatment.

Until then, I’ll continue with my walks, resting, and slowly recovering, thankful beyond words for all the support I’ve received. While I still may not be able to reply to every message, please know that I have been getting them and they fill me with so much warmth.

I’m starting to hit an energy wall, but before my mind starts racing at 5am again, I just wanted to make sure I got this post out to say thank you!

With love,

Jeremy

 

 

 

 

4 Replies to “A Week of Change (ending without a cane)”

  1. Thank you for sharing your journey. My 32-year-old son was diagnosed with an AO3 just about 2 years ago and your blog was the first thing I found after the obligatory Wikipedia and medical sites that offer such grim and outdated information. I’m glad to hear that your recovery is going so well, and hope that you continue to get back to normal quickly. We live in Oklahoma, but if and when the time comes that he has a recurrence, we will be working with Dr. Berger and Dr. Chang at UCSF and it has been a comfort to read of your good experience there.

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  2. Jeremy – Thank you for sharing your story. It is a gift to us, the readers, and I am truly grateful. Sending healing thoughts and lots of love from Wayland.

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  3. Jeremy, you are an inspiration to us all. We have worried,prayed and sent our love to you and the family. Try to rest but keep on striving to get stronger. Everyone has your back. Love to you, your Mom and all the sibs and fiancés…uncles and aunts. 👍 💕

    Like

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