Still getting lots of emails from many of you, reacting to the news about my radiation and chemo. First, a few things I forgot to mention yesterday from the visit to the acupuncturist, Viktor: He suggested several herbs that I should take, including a Chinese herb and although the herbs are all natural and should not interfere with my treatment, I thought it best to check in with my doctor ahead of time. He told me to hold off on the herbs for now just to be sure. The only thing that I can take recommended by Viktor is ginger tea to warm my body, reduce inflammation, boost the immune system and improve mental clarity. Viktor also encouraged me to change my language/mindset from “challenge” “ordeal” and other such words to “my situation” – by looking at this more positively rather than as a negative to be overcome, it will make me stronger and better prepared to look the cancer in the eyes and say “ I will not let this own me!” This is the appreciative approach that I learned so well from EnCompass.
Xavier sent a long message about his mom, Helena, and her battle last year with cancer. Here is part of his message: “About the news…. I am so pissed off. Pissed off at the world. Pissed off at the fucking cancer.
“When my mother was told she had ‘something’ in her lung more than a year ago I refused to panic. ‘Let’s be rational and scientific’ I told everyone and told myself. In the end science said there was a tumor, she had surgery which included removing half of one lung, and she had to take TB oral treatment for close to a year enduring the side effects. It was an ordeal, it was hard for everyone – especially for her, but now she is back to normal and I am so glad.
“Now it’s your turn. Since the start of your ordeal I told everyone not to panic and to be scientific about it. I am glad everything has been done right, the tumors were found and the surgery was successful. Like you said, when we thought that was the end of it…. one more fucking push!! I am glad the prognosis is good, I am glad you have Antonio and others around you, I am glad you have access to the best possible medicine. Sometimes I wonder how I could do more. If you ever need me, please call and I will be there in less than 24 hours. I am serious.
“The point of this message is to say…. stay strong baby, you are not alone. If there is one person who can endure this it is you. You have the physical, emotional and spiritual strength to overcome this shit. You will proudly wear the badge of ‘I survived cancer’. Maybe the world wants you to have that badge next to the many others you have?: ‘I was a PC volunteer’, ‘I was a UN worker’, ‘I am a good son’, ‘I am a super friend’, ‘I am a mentor’, “’I am a silverfox’, etc , etc, etc. As if you needed more badges!
“The treatment will force you to slow down. You will need to learn how to live with slowing down. Glenn and I are finishing a course on Mindfulness, and it is quite remarkable. It is a slow and introspective activity. Just a thought for you. Regarding society, friends and acquaintances, you decide what is best. In my mother’s case she wanted peace and silence for most of her experience (she also wanted no exposure to viruses and bacteria) so we walled her off, and my brother became the SPO (single point of contact, sharing a broadcast via a Facebook group to those who were interested) – much like the email chain that Miguel started upon my suggestion when you were in Madrid. We also created a calendar for caretakers so that Santiago, Felipe and I could be with her for more than 2 months. I know I don’t need to tell you this, but know you do not NEED to respond to anyone, except for the communication with your dad and Antonio.
“Keep the rest of us posted as much as you want, but be ready to push back and select who you communicate with – only people with good vibes :-)”
Xavier’s email made me cry and no it was not the steroids! The story of his mom is very helpful and I, like her, am trying to find that balance between having people around me to support and help out and finding and reserving quiet time and saying NO as needed. The truth is that I need a lot less than people think I need; more than anything, I need time to just BE and I have not been very good at that. My nature is to DO much more than just to BE and perhaps that is why the universe sent me these tumors – to learn more about BEING and to let up on some of the DOING! Let’s see if my soul is wise enough to take in the lessons that are behind and in front of me. And maybe the treatment that, as Xavier said, will slow me down, is the universe’s way of making sure I learn that lesson. I can be a stubborn bitch! I need reminders from time to time. Hard for a New Yorker who is used to going and going and going, like the Energizer Bunny.
A few thoughts after this email from Xavier:
My dear friend Susan Letteney has offered to set up an easy online system for people to choose the days they may be able to help out in bringing me home from radiology. (Hoda asked why this is even needed! The doctor told me that since the radiation targets my brain, I may experience disorientation, so it is safest to have someone by my side to get home.) When it is set up, I will send the link and you can sign up for when it will work for you. That said, Antonio was a bit annoyed with me for sending out the request since he said he’d like to accompany me as much as he can when he is in NY and while I understand, appreciate and love his wanting to do that and be there for and with me, I also told him that I think he needs to (1) let friends who WANT to help out do so and (2) give himself a break from always having to be by my side. The people so far who have said they would like to volunteer for this are Susan Letteney, Lyn McClean, Ed Sullivan, Jon Cook, Nancy Raphael, Aalap Shah, Eric Sawyer, Siddhart Dube, Paulette Nichols, Gib McCurdy, Suraj Bhatia, Jonathan Labman, Mark Domann, Stewart Schulman and Drew Racine. No need to write me if your name is not on the list; instead please wait until I know the days and times and Susan will set up the self-sign-up link for me to share.
Like Helena, Xavi’s mom, I will indeed do some pushing back from many people who are trying to visit and/or call: I want to continue for now to be able to stay quiet and take naps, meditate using brain.fm and have some private space just for me. Sorry if I don’t answer all of your messages directly – it’s not that I don’t read them and love you – I DO! – just again a means of not exhausting my energy and that continues to be my struggle in spite of all of my will to slow down. And with the new news, the energy level is down a notch as I absorb the impact of what is ahead.
Funny, when Xavi said that he is “pissed off” about the tumors being cancerous – ME, TOO! And just reading his message underscores that for me. Hadn’t really thought of it in those terms until I read his email – I was thinking more in terms of being sad and surprised, wishing this was over, but truth is “pissed off” really is what I am feeling!
I am getting better at asking for help. For example, yesterday, I was in Wholefoods and had brought along my rolling, insulted bag, but it was too heavy for me to lift, so I stopped a random person to help me and he did so without hesitation.
I also finally spoke to Joan, my Mom’s best friend for many years who is like a second mother to me. Joan with her daughters Jayne and Georgi lived next door to us and Jayne and I used to walk to school together (today, people would call social services saying that we were victims of child neglect) until we moved to where my Dad lives now back in 1963. Joan has always offered me all of her love and support. I got this email from Jayne:
“Just talked to my mother and heard what’s going on with your health. I’m shocked and so upset for you. It hurts my heart to think you have to deal with this ordeal although I know you will be fine at the other end.
“It’s funny, although we are considered ‘old’ people, I still see you as my neighbor in crime, walking to school as kids., Gloria (my mom) telling you to ‘be nice to Jayne’.
“Time passes and we all go about our life and unfortunately we don’t see each other, I guess what I’m trying to say is we are still family and we are here for you! I know you have many friends but anytime, whatever you need just ask!”
This from Muna, the UN Cares coordinator for Asia based in Bangkok: “I have been following on your progress with smile and tears from far. I refrained myself from writing to you until now, as I knew it will send the dark clouds currently circling around me…This morning I felt like reaching out to you refusing to take note of your tumors turning stage 4 out of the blue. I decided to go ahead and ask for that positive energy that I received before, (from) time to time, whenever I needed it. I know if you give me some, you shall still have plenty for you. I also know you will not entertain my blue funk; will give me a big scolding to be so selfish and feeling the way I am feeling right now while there are so many of us, the people of Syria or Ecuador, or even the US (worrying with the possibility of Donald Trump to be the next president! God help us all!) on the same boat dealing with life.
“So, I am sending you this email to let you know that I am borrowing your positive energy to go through this time with you. And, I am also there with you making a big pot of your favourite daal.
“I am thinking of you, Alan, almost all the time.”
I told Muna: “(A long time ago), I had surgery on BOTH of my knees and while at the time, it felt like forever, within relatively short times, I was literally back on my feet and dancing. biking, walking and all of my normal activities… As for the daal, I am waiting patiently and can’t wait to have a big bowl of that delicious, nutritious and healing dish.”
Prayers, beauty, words of wisdom and good energy have been coming my way:
From Seth and Andrea: “Andrea and I have started popping into churches here and there in Rome and lighting a candle for you. Despite not being overly religious… it’s a moment for us to think about you in the spectacular setting of these Italian churches… and put a little positive energy out there.”
From Sandra Haji-Ahmed: “May you forever have light and positive energy inside and around you
“May the great spirits of the forests and mountains and faraway stars join hands with your creator your friends your family to assure you of full healing in every way
“May you find delight and Strength in the small and large moments of daily living and know that more triumphs are possible whatever the challenges
“May angels sit on your shoulder to support and inspire you and give you the freedom to laugh and cry
“May you enjoy the riches of friendships and savor the knowledge of how very loved you are.”
From Michelle Dannemiller: “This is one of the rare times in my life when I’m struggling to find words. While your diagnosis is clearly scary, I’m taking comfort in the fact that you are one of the strongest men I know. If anyone can beat this, it is you!
“We are sending up prayers for your complete healing and holding you close in our hearts.”
From Suraj Bhatia: “You are such a strong man and love you so much. I am totally confident that you will make a full recovery. I’m sending all of my love and good wishes to you. I also said a prayer this morning to Ganesh for your good fortune.”
From Steve Cadwell: “I”ll keep sending you love love love.”
A photo from Steve’s garden:
From Carey Peck a poem from Lao Tzu:
“Empty your mind of all thoughts.
Let your heart be at peace.
Watch the turmoil of beings,
But contemplate their return.
“Each separate being in the universe
Returns to the common source.
Returning to the source is serenity.
“If you don’t realize the source,
You stumble in confusion and sorrow.
When you realize where you come from,
You naturally become tolerant, disinterested, amused,
kindhearted as a grandmother,
dignified as a king.
“Immersed in the wonder of the Tao,
You can deal with whatever life brings you,
And if hard times come, you are ready.”
From Devashish Jain and Marc Antoine: “I’m sure you are getting great advice from all the amazing people you surround yourself with. Sorry to hear you have to go through chemo and radiation. Even though I’ve known you to be more positive and healthy in the sense of life and diet, it is confusing as to why and what caused this. I wanted to share this…
“My aunt (the only woman in my life who stood behind me when I came out and I respect deeply) got diagnosed with breast cancer a few years ago. She was devastated. She tried to answer the what and why. She told me many months after the treatment was over …that the path forward for her was the people she kept around, which include her two beautiful daughters… These are the people that gave her the strength and energy and ability to fight and move forward. I have never gone through what you are experiencing, but I think you have a lot of happiness around you. Think Antonio. Find peace and strength in that. Like my aunt, maybe that will bring you through all this.”
From Mark Burr (aka Iba Yaag): “It seems pitifully weak to say that we are thinking of you and praying for your complete healing, but we ARE pitiful, most of us, most of the time. My dear mother always offered the object lesson of mountains and molehills. In Missouri, we didn’t have mountains and I didn’t know what a molehill was, but I got the point. We agonize over the trivial until something truly important hits us in the face. Anyway, we love you more than you can imagine and are praying like God actually owes us something.”
Yesterday early evening, I had a visit from Isabelle and her dad, Ismael, whom I had not seen for many years – a long story and not for here. But it was wonderful to see them both, especially Isabelle, now in her third year of college. She has grown into a beautiful young woman after a lot of teenage turmoil – I was there the day she was born and I have missed her since we ended contact.
I’m heading to Fire Island for a weekend with Antonio plus Miguel and Ronny, Chandler and George. Looking forward to the beach air and looking out into the natural paradise that is the Pines.