Exhaustion is the word today! And I feel like I should not be that tired! I slept 8 solid hours during the night and before going to sleep last night, I had a 2-hour nap on the sofa. Today, Antonio and I went for facials (good way to spoil ourselves) and I also was half sleeping through that. But we walked to the spa – 20 minutes – at a good clip. The fastest I have walked since this all started and with the least dragging on my left side, at least on the way there. Coming back was another story – I was dragging, even if Antonio refused to let me admit it openly, telling me that I was walking perfectly. But I know myself and my body and that was not my normal walk.
I also had a bit of a setback from forgiving myself this morning: while I was in the shower, I looked at and felt my body and my self-observation is that I have a bigger belly than I ever recall. Part of that is that I am eating like a Spanish “cerda” (pig). When I sit down for a meal, I don’t even wait for Antonio before just digging in and essentially inhaling the food on my plate. We bought a chocolate “babka” yesterday and have been eating that for dessert at each meal. It is just too delicious to resist, but also way too rich to be eating for each meal. I need a bit more self-control on the food side! Send some restraint my way please!
I finally got around to doing my healthcare proxy document and it includes this para: “I’d like the decisions to include not artificially keeping me alive unless for temporary reasons post procedures, but if there is not a reasonable chance that I will be able to function fully and well, not to go for aggressive procedures – quality of life over quantity please! My agents are authorized to discuss my condition with medical professionals and family members to come to a decision.”
When I got home after the facial, I took another nap and after about an hour, I needed to use the toilet. When I got up, my left foot and calf cramped so much that I was in excruciating pain that would not let up! I literally cried out with the pain. Antonio was out for a work appointment and I called him. He ran home wondering if we should head to the hospital, but by then the cramp had thankfully let up.
We have been operating on Spanish time lately, half my and half Antonio’s doing. Today, when we left for our facials, we had agreed to leave home at 12:15 for the 1 PM appointment, but didn’t head out until 12:35 so that’s why we had to run!
This evening, we had agreed to head to Manhattan Mini-Storage at 4ish, but didn’t leave for the 2-block walk until after 5. We now have a 5 x 5 x 8 foot storage bin that we plan to move lots of stuff to this weekend (with help from Aalap, Miguel, Don and Marc) to clear space in the apartment now that Antonio is here full time. We want this done before the hospital so that when I get home, the apartment will be less cluttered with all of our excess!
My surgery has been fully confirmed for Monday, April 11, 2016, with arrival to the surgical admission unit on the fourth floor of NYU’s Tisch hospital at 9:45 AM.
The procedure will be in the early afternoon. Antonio and Susan will be in the waiting room until the doctor reports on the outcome and a message will be sent your way once they know what has transpired. After coming to in the recovery room, they will be able to check on me and then I go to the ICU until Tuesday. So don’t plan on visits until probably Wednesday at the earliest – maybe later and maybe not until I am settled at home.
Sharing some of the messages you have been sending, filled with love and wisdom:
My friend Stewart had very serious surgery a few years ago and offered this advice that we will implement: “After my surgery, a friend took ‘reservations’ for various time slots to be with me while I was in the hospital. That way I was never overwhelmed with too many visitors at once. And I was never alone. And it left my mom with someone to be with me when she needed a break. I’m sure you’ve all figured this out already. If not, my friend divided the day into time slots and asked for volunteers for each of them. I was well taken care of. Alan was even one of the volunteers. Just a thought. Thanks (to Raj) for the work you’re doing. It’s quite the gift.“
So anyone who wants to perhaps visit and even help by giving a break to Antonio, let Raj know by email and we will be in touch for what may seem best to work. That said, Antonio continues to insist that he wants to be by my side at least through Tuesday. Miguel will be the anchor on Wednesday. Again, keep in mind that visits may not be at the hospital for many people – it may be better for when I am home and I will likely be home for a good week and in need of support starting next Thursday!
This from my college friend, Rae: “–as for company, I know exactly what he’s talking about. I will never forget when I was first diagnosed – naturally friends wanted to come and see me. Three came to my house and when they left I had no energy and didn’t feel well. That taught me a lesson: that even though people have the very best intentions, and want to visit to show they care, it’s the PATIENT (or close friends) that have to send the message that visiting will have to wait. I don’t think people realize how much energy it takes to deal with a health crisis. NO MORE DINNERS FOR SEVEN!!
This from Juncal, a dear friend of Antonio who had a major health crisis last year: “I understand all that mixture of feelings, remorse, disappointment and strength, please keep that strength and do not let it go, do not apologize for what you can do or say, because those who are with you, we do not need (apologies); we love you and understand you, because the only thing we can do for you is to be there, for anything you need and send all our energy, because believe me, you will feel all our energy and (this) will help you to keep strong and fight. You will be fine soon, and we will talk about how beautiful (it) is to discover yourself receiving so much love, from so many people!”
This from Jonathan: ‘Please pass on my love and support to Alan.I’m reading your updates, sweetie, and just letting you be. I’ll see you soon but no pressure. …. You’re also going to get through this fine!” Jonathan had sent a text message earlier in the week saying: “Happy to help however – even if that means leaving you alone.”
This morning, I got a message via Facebook from my friend Kanna Dharmarajah from Sri Lanka – “Hello stranger, how have you been? Hope you’re doing well. When you coming back to Asia for a visit?” I thought maybe he had heard about my situation and was reaching out since we had not been in touch for a bit. But he had not heard, but somehow the universe was sending him a message and putting us back in touch again through the wonder of social media.
Finally, from Hoda: “Alan! I am holding your hand across the ocean…like your dad. I am sure all this energy sent your way will be surrounding you during the surgery and everything will be fine … Hugs +Reiki+ positive energy (to you and Antonio). Sent all the way from Lebanon.”