Prequel to my brain tumor plus!

Be warned: this is a long update, so feel free to either pick and choose what you read or take a bit more time today.

I have thought quite a bit about what may have led to these brain tumor and here is the prequel. In the end, really no idea where they came from.

The earliest possible situation I was in that may have had some effect was that late December/early January, Antonio and I went to Peru for a fantastic experience.

This from a note I wrote in Peru:
“The moment we landed in Juliaca, near Puno, we could feel the altitude. We were at 3800 meters/12,500 feet and my head was light – this in spite of taking the altitude medication acetazolamide. Both Antonio and I experienced the known side effects of the anti-altitude drug with increased urination and a “pins-and-needles” sensation in our feet and hands. I was up probably 10 times during our first night in Puno. Out to dinner that first evening, I was nauseous to the point of cold flashes, feeling like I was going to faint. We both had headaches and diarrhea. I was so energy-less that I felt like an old man of 90. Antonio had all of these, but to a lesser degree, and he also had altered taste, remarking that his beer was bitter.

“We did all of the right stuff: taking it relatively easy, eating lightly (mostly quinoa soup), drinking coca tea, using the oil from a local plant called muna, having deep tissue massage and using hotel-provided oxygen. But after days of trying to adjust, first in Puno, then in Cusco and finally in Ollataytambo, we never reached the 100% mark in time for our Inca Trail hike so had to cancel given the rigor of the climb. We wound up going to a doctor who prescribed medication, but it was another 48 hours before feeling right. While disappointed with the cancelation of the Inca Trail trek, we were able to enjoy other amazing places that were less strenuous, although still with their own challenges! “

And here is what I found in doing some research. The article is titled High Altitude Cerebral Edema: Pathophysiological mechanisms and treatments associated with HACE

A few paras:

“Travelers need to be educated on the risk associated with high altitudes since as many as 5% of cases of AMS (Acute Mountain Sickness) can develop life-threatening high altitude cerebral edema (HACE).

“These previous theories were consistent with present thinking in that the main contributor to high altitude illness is hypoxia. Hypoxemia is explained through a series of signals that ultimately cause brain swelling due to cerebral edema and elevated cerebral blood volume. Cellular and molecular responses signal hypoxemia that may modify endothelial permeability (vascular endothelial growth factor) or protect the endothelium against oxygen-derived free radical damage. Hypoxemia is also associated with the upregulation of nitric oxide synthase and nitric oxide has been linked to the pathophysiology of headache and blood brain barrier permeability. Additionally, hypoxemia can elevate circulating arginine vasopressin levels through peripheral chemoreceptor activation, which consequently causes anti-diuresis and increased extracellular water levels.”

Next incident was a few weeks before leaving for Equatorial Guinea. Antonio and I were in NY, sleeping and in the middle of the night I broke into a cold sweat and needed to run the toilet, a mixed feeling of nausea and diarrhea. When on the toilet, I could barely do either and was so miserable that I wound up just sliding to the cold floor and could not get up! I called out for Antonio to come to help me and he slowly helped me get to my feet and back in bed. We never figured out what led to that incident, but I was fine minutes after.

Next was when I met my friend Mark Domann, visiting NY from Ohio. We met at Café Grumpy in Chelsea for coffee and then walked over to Wholefoods and only then did I realize that I had forgotten my iPhone at the café – and while I won’t pretend that I never forget anything – I do! – leaving my phone behind is a rare thing. Luckily, we called and someone from the café picked up and I was able to retrieve it, but again, just a possible signpost on the way.

The day before going to Africa, I was at the gym for my daily workout. I was doing shoulders and back that day and I usually lift 35 lbs. on each side using the cable machine, but I couldn’t even move 35 on my left side, so lowered to 20 and even that was a struggle. My first thought was that perhaps I had some kind of tendinitis or related injury.

While in Malabo, the first night was at a hotel near the UNICEF office before transferring the next day to the hotel where we had the retreat. When I arrived in the new hotel later the next day, I realized that I had forgotten to pack my jeans and my kit with all of my products such as face wash and cream, hair cream, shaving products and toothpaste. Again, very unusual for me since I always double check the hotel room before I leave it.

When I got to Madrid after 8 hours in a plane from Africa, Antonio met me at the airport and we went to lunch at a wonderful restaurant called “Ojala” (Hopefully). We had a light meal and then were heading to the AIRBNB apartment we had secured for the week, just a block away. Antonio went outside and was waiting for me, but I could just not get my left arm through the sleeve. It took way more time and effort than normally.

The next morning, we first met some friends for churros and headed to the Museo Thyssen-Bornemisza to see the exhibit called Madrid Realists and my left side was dragging like crazy – my leg and foot were slow and my arm was just hanging by my side. Antonio insisted at that point that we head to the hospital and that is where all of the tests revealed the tumors.

So that’s the prequel in a nutshell. Was it the altitude in Peru that set them off or were they already there and just inflamed by the height? Do these tumors have some genetic component? That’s a theory that is still not proven. Were they caused by stress, also a theory that a few of the alternative people I worked with (the woman in Alicante who works on energy balancing through the lens of Chinese medicine and the Ecuadorian homeopathic doctor who said that homeopathy works with the mind-body connection and doesn’t separate these 2 important parts of our Selves)? In the end, I may never know the answer about how these invaders got into my brain, but the good news is that for now, with them sitting in some pathology lab being analyzed to ensure that there is no cancer, my brain and body are doing really well.

Yesterday, I was at home until 3 PM, a mix of writing, email, reading the NY Times online, chilling on the sofa and having a late afternoon nap with Antonio after he had gone to the gym and had his hair cut. We went for a walk around 3 to get ice cream…. And then went up to the Highline, sitting in a shady spot to watch all of the tourists for about an hour. We were out for 2 hours tops and when I got home, I was again exhausted. Really not good at pacing myself yet. A few of the messages I got were spot on about this. First from Drew, Lee and Ned’s son: “Please remind him with this type of medical procedure he might not see or notice he is over exerting himself at all… but might just pass-out someday not realized he pushed himself too hard… I’m sure he would be falling into Antonio’s arms if that were the case 🙂 But please remind him when in doubt, take it easy… at least these few weeks.”

And this from Stewart: “Do keep healing yourself. I’m grateful to be seeing photos of you on the ‘other side’ of such adversity. Keep taking care of yourself. Do remember to balance it all. And know that I’m still thinking about you and keeping your speedy recovery in my thoughts and prayers….I am not surprised that you are overdoing things. That seems to be your nature. And for the most part it is quite good. I think that’s a large factor in your life’s success. But I do encourage you to be patient with your accomplishments… Acting as if you’re fine is actually quite helpful in a speedy recovery. (At least it was in my experience.) But a balance of rest and relaxation and some indulgence in that is also helpful. You know all this. But we do forget. So another loving reminder that slow and steady is also a viable option.“

A few people have been asking about Passover and Fire Island. For Passover, I told my Dad that I will not make the trip this year – I just think it would be too much, too soon. Especially to be in a crowd of 15 or so people, with lots of kids around, it will be draining. For example, I got a lovely email from my niece Stefanie, mom to 4 beautiful girls. In the email, she said:

“Just wanted to send a quick note to let you know that I adore your updates. J and I also read them together and then share snippets with the girls, who have been asking lots of interesting questions. My favorite one was from Marabel right before your surgery.

M: “Uncle Alan is usually silly. Will he still be silly?”

Me: “Oh, for sure, he’s been silly forever. Nothing will stop his smile making.”

M: “Oh good. I want him to still be silly”

And a week from now, I doubt I’ll have the energy to be my usual silly self for the girls! That will not only disappoint them, but me.

So we have decided to do a small and quiet Passover on Fire Island next weekend. The Haggadahs are being printed – one that I wrote a few years ago and updated just a month or so ago. I’m attaching a copy. It’s a modern update focusing on lack of freedoms that remain in our world today. Feel free to read or discard or add your own words and use it for a Seder.

Yesterday evening, we met Miguel, Jon and Aalap for dinner and then all of us except for Aalap headed to the movies to see Barbershop – highly recommended.

Today, hoping to have a mostly low key kind of day, though will be going for brunch with Suraj. The week ahead is shaping up and again, trying to pace myself. Tomorrow, Chandler will be coming by to help with some computer issues I am having, Tuesday will be a follow-up with the plastic surgeon to have my sutures removed on my head, Wednesday, Ellen is coming into the city for a visit and Friday we will head to Fire Island.

Final wise and related words that were at the bottom of Drew’s email: “When we give cheerfully and accept gratefully, everyone is blessed.” ― Maya Angelou

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