A Bell of Mindfulness

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Monday afternoon – I am just waking up from a nap on the New Jersey Turnpike. Antonio is driving. We are on our way to visit my Dad. Last visit until after the radiation is over which will be about 7 weeks from now.

This morning, my first doctor’s appointment was 9 AM with Dr. Joshua Silverman, the radiation oncologist who will be in charge of the radiation therapy along with his team. Before going to see Dr. Silverman, I have to admit that I was anxious both about the appointment itself as well as the treatment road ahead. Some of the anxiety has been relieved, but much remains for now.

We first met with his nurse who again took my medical history, in spite of everything being in the NYU online system. Then again, part of the story was repeated for D. Tan, Dr. Silverman’s resident and finally again for Dr. Silverman. Both Tan and Silverman also examined me physically – feeling my musuclar strength, shining a light into my eyes, having me follow their fingers with my eyes… All signs are good as are my blood pressure, slightly on the low side, but within normal range. Dr. Tan and then more in detail Dr.Silverman explained the radiation, including what the daily routine will be: the radiation is very targeted on the areas where the tumors were removed, the procedure itself lasts only around 15 minutes, I should feel no pain or sensitivity at all, I should have almost no side effects for the first 2 weeks, but staring week 3, chances are I will start to feel fatigued and will also probably lose my hair in the radiated areas, although this should grow back within a few months post radiation. I will continue with my anti-seizure pills and will be taking anti-nausea medication each day an hour before treatment and this can be adjusted if I do experience nausea – I need to let them know. I will meet each Monday with Dr. Silverman to talk about progress and to discuss any issues that I may have. Dr. Silverman will meet weekly with Dr. Chi, the neuro-oncologist to discuss my progress and jointly they can make any decisions based on how I am doing.

The appointment was over about 11 AM; half an hour after my appointment with Thelma, Dr, Chi’s nurse was scheduled, so we hustled the 5 blocks to the next appointment. Thelma explained the chemotherapy part of my treatment in more detail and we also discussed how I will be taking the medication daily, including weekends, not just on the days of the radiation.

We then ran back over to Dr. Silverman’s office where I had a CAT scan and also where they made me a custom mesh mask that will be used to hold my head in the right position for each of the radiation treatments. A photo of the finished mask is here.

I then met with another nurse who gave me a special gel that I will be using post treatment to reduce any inflammation that may occur.

This third round ended around 2 PM and we had lunch in the NYU café – quite good for hospital-based food. We shared a fresh roasted tomato pizza, broccoli rabe and collard greens before heading to ACE Car Rental to pick up the Nissan that we are now in. We were on the road around 4:15 and were super lucky to cruise out of NY with virtually no traffic and now on the turnpike, the road was clear, Antonio enjoying his first highway driving in the USA.

This past weekend was also mostly a good one on Fire Island. Miguel & Ronny and Chandler & George came and they were all workhorses along with Antonio, me again directing what needed to be done. They were able to finish raking the entire yard, bagging the debris and digging out the little bit of bamboo that had popped up over the winter. The inside of the house as well, was cleaned and arranged including discovering a mouse that had somehow made its way into a cabinet and feasted over the winter on candles and paper. The tiny body was dried up, but it was amazing to see the amount of damage a creature only a bit over 2 inches can do and how much poop it can leave behind.

Eric Sawyer came by to repair the leg of the sofa that was loose. He drilled a new hole and the leg is now as sturdy and stable as when new.

The downside of the weekend was that I had relatively low energy and stayed home the entire time. I didn’t even want to go to tea or to the big annual opening party that Gil Neary throws each year to celebrate his birthday. My mood was not the best even with everyone around trying to lift my spirits. I recall messages I got earlier in this process from people saying it’s okay to feel shitty and to just give myself permission to feel what I feel. So I did just that!

I continue to get messages of love and support. Here are just a few worth sharing.

Paulette Nichols: “I love you Alan and am so sorry this is happening to you. One of the most caring and cleanest living souls I know. Life is never fair. But I am consoled in the fact that you are also one of the strongest and hardest fighters I know.”

Noah Derman: “I ordered you a book from Thich Nhat Hanh, a Vietnamese Zen Buddhist who you probably have read or know of …he always provides me with deep insight into hard issues. I had the amazing opportunity to meet and meditate with him for a plum village retreat in Chiang Mai. He has so many good books but I went with You Are Here. I imagine the most important thing for you is to just be present with each moment, appreciate the beautiful things that are right around you, and be patient with yourself and the world.

“Here are his thoughts on illness: ‘A serious illness can be a kind of mindfulness bell that starts our true practice and gives birth to our spiritual life. So our sickness may contain a positive element which helps us to grow. It’s a bell of mindfulness for us and everyone around us.’”

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One thought on “A Bell of Mindfulness

  1. Dearest, darling Alan,
    I read all your emails with amazement and appreciation for all you are going through and sharing with us and how beautifully you are handling this. I have no help to offer except thinking of you with lots of love across the continent.
    You are blessed (deservedly so) to have so very many diverse people who love you and want to support you through this. Know that we are all here for you and you are much loved.
    Sheila

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