Awful!

Antonio will be home from Europe in a bit over week. Can’t wait!

This past Monday, I was very weak on the entire left side of my body; while showering, I was shaking uncontrollably – luckily no fall. I called Dr. Yoshi who told us to head to the ER. I was accompanied by Don and they did an MRI and CT scan to discover inflammation in the area where the right tumor was removed. To make a longer story shorter, they are recommending another surgery to clean that area and to test the tissue; I have a few days to decide, but will likely go for it!  This will be followed by more chemo but hopefully not as strong, meaning fewer side effects.

I will speak with a few more people first to decide, including Dr. Golfinos at NYU who did the first surgery.

Friday night, I slept the entire night hooked up to a monitor to check on my brain activity. Good news is no sign of seizures bringing further support for the surgery option.

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So still in the hospital for at least another day.  Likely through Wednesday until I can see with Dr. DeAngelis. I still don’t have complete control over my bladder or bowels, but here in the hospital with24/7 nurses, I am well catered to.

I had a long conversation with Sandra who has been undergoing her own cancer treatment and she told me that what I am going through has been very much her own experience. She said that she dealt with it by telling herself that her job each day was to get a little better. This meant that she realized that her body was working so hard on the INSIDE to process the harsh chemo that her OUTSIDE needed to take a break. She would lie on her couch pretty much all day and try to keep hydrated by sipping  Alkaline water and eating a bit every few hours, even if nauseous, to make sure her body had energy to fight on.  She would occasionally walk to the front door to take a walk, but for a number of days would just turn around and head back to the sofa, not ready to face the walk. I really know the meaning now of “one day at a time.” Even more: “one hour at a time.”

Here’s a message from Susan Letteney:  Alan will be in the hospital (Memorial Sloan Kettering) at least until Wednesday, September 7th.  The doctors and staff are providing him with excellent care around the clock.  He has more than enough visitors, so he asks everyone please don’t come or call for now.  If you are scheduled on the Doodle poll, please text first for confirmation before stopping by.

Alan is requesting that if you have any questions, please write to him by email instead of asking to speak to the doctors.  That way there will be one voice and we also minimize the burden on the doctors.  We will add answers/content to the blog as things develop.

From Geoff:

Reading your blog and responding…..

  1. Your energy will return.
  2. Your motivation will rebound.
  3. Your balance was never any good – lets hope for an improvement there, especially with your stairs @ W29th St.
  4. All of us struggle getting out of a comfy couch and it will become easier for you
  5. Sit to pee – I certainly do that overnight, saves me waking completely and it empties the bladder
  6. Your appetite will return – just make sure that when it does, your fridge is full of Harvest Market vegetables not Jacques Torres chocolates
  7. Sorry about the puffy eye – we have all had those for years
  8. Constipation – I rewrote this several times as I struggled with the Alan I knew without those problems (I remember that wiggle at low-tea) and the Alan now – https://www.youtube.com/watch?v=ah4elOPMETc
  9. You were never straight and neither was your posture – but you will straighten like Phoenix from the flames as you progress thru your treatment
  10. Coordination – this was your “hail mary” and it will return.  You were always a strong advocate for coordination and I believe that your challenged body will live through the treatment and deliver us all with a V2AS (Version 2 Alan Silverman) post-cancer.

By the way, I’ll be asking my visitors to add comments on my blog after they leave. Susan Locke has been first to do this. Click herehttp://alansbrainblog.com/finding-a-cure-for-cancer-via-a-facebook-post/) and scroll to the bottom

 

From Malcolm, my Peace Corps buddy:

I just finished a lovely conversation in the languages of Senegal with Alan’s Peulh nurse, Coumba Diallo.  What are the odds??!! Also, as we were wrapping up our conversation, Susan Locke was walking in to see Alan so I chatted briefly with her.

Alan’s lying in a hospital bed. He looks a bit tired but is smiling and his voice is strong. Tomorrow will bring news as to how the rest of his week will progress and whether he’ll need to revisit surgery as part of his path to treatment and recovery. Fingers crossed for him. His will and drive are strong and that’s a great thing. He also apparently has an amazing support network of friends visiting him in hospital. No surprise, that!

Thought you all might want to know. The battle to return to good health is engaged, with astonishingly great resources on Alan’s side. Hopefully Alan will respond well and pull through this all to stand strong again soon.

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22 thoughts on “Awful!

    1. You are the warrior...and still as amazingly handsome as ever. We are with you in spirit and in our hearts. Just wrote a check to Sloan Kettering. It's my annual gift. It's a "mom"thing. With LOVE.

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  1. Alan, we need you remain as strong as you always been. I am sure these difficult days would end very soon and you'll get back all your energy and full health.

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  2. Thinking of you Alan and pulling/praying for your recovery!! I'm glad you're getting such excellent care. You have a wonderful, generous spirit that you've shared with so many over the years. And, it's great to see so many people rallying around you!! Soak it all in to support you every step of the way so that you have our energy to draw from from as well.
    Lot's of Healing Love, Gib

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  3. I. Love. You.
    You have made me laugh and smile since as far as I can remember and I wish I could be by your side right now to make you smile. I know your body is strong enough to heal - as you said, "one hour at a time"!

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  4. Even flat on your back and bandaged you manage to look beautiful! Lots of love and healing. Thinking of you every day

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  5. You are in my thoughts always! I'm amazed by your strength and in awe of the amount of love and support you have from family and friends. You will get stronger because you are mentally,physically and emotionally fit and we all love you!!

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  6. Sending you much positive energy and love. So sorry to read about this set back but take comfort in knowing that you are in excellent hands xx

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  7. Dear Alan,
    It looks like you have one more obstacle to face during this hard recovery time. Thinking of you while you have to undergo another surgery and waiting for your next update. Lots of Love your way always, Paola.

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  8. I shall ring the temple bell, wake up whoever out there, and have my prayers heard. Stay strong dearest Alan. You are in my thoughts.

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  9. Querido Alan, I read every time the blog, and try to not overwellm you with more messages, I'm a comedian as you know 🙂 I was reading the the points and number 3, oh well, I guess a few of us have strogle with those stairs, oh boy do I reemeber, I have seen Miguel flying down the stairs and landing intact 🙂 miss you my boy xoxox

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