Feels like back to the beginning right now

I am totally confused and disappointed about where I am in my process. On Tuesday, I had an MRI, an annoying and frustrating process. In brief, for my ‪1:30‬ appointment, they wound up starting the MRI only ‪at 3:00‬; if they have my phone to call to confirm the appointment, why can’t they call the same number to say “we are running late, so come late”!?

More importantly, Thursday I met with the radiation oncologist and then with the oncologist to go over the results of the MRI and saw the actual images.

We had been told from the start that there were only 2 tumors, both in Spain and in New York. Thursday, they said there is a third one that appeared on the MRI. They don’t know for sure if what they see is actually a tumor or some kind of reaction from the radiation.

Dr. Chi, the oncologist, said that most people with cancerous brain tumors have a recurrence – sometimes within a month or so, but could be up to 7 or more years. Antonio and I were both shocked by this news! We had been under the impression that after the radiation and chemo I would be done! And while Dr. Chi may not have said it using that language, he also had not said anything about high recurrence for most people. This was all new information for us. To be honest I felt betrayed in not having been given the full picture from the start.

Options that the team of doctors (Drs. Chi, Silverman and several neuro-surgeons in the absence of my doctor, Golfinos) discussed:

• Having a biopsy to confirm if the image is a tumor or just swelling. The plus to the biopsy is that they will know what is being treated and it opens more options to get it right. The downside is that this will entail going back to the hospital for surgery to open my skull again to access the tumor. And from what they have interpreted from the MRI there is a 90+% chance that the image is indeed a tumor, not an effect from radiation.
• Assuming no biopsy, they propose high-level radiation targeting the “tumor” and complementing it with a type of chemo called immunotherapy, which is experimental, meaning not yet approved by the FDA, but current trials are proving highly effective. This will mean going in for treatment every 2-3 weeks for up to a year, but there are few if any side-effects from this treatment.

As you may imagine, both Antonio and I were teary-eyed, sad and shocked. I told Dr. Chi that while I know that nothing is 100%, I also don’t want to live my life going from doctor to doctor, treatment to treatment. I’ve been through so much already and neither of these options really appeals to me, but I have to move forward and not pretend the tumor is not there.

I had lunch yesterday with some ex-UNCEF friends/colleagues: Sandra Haji- Ahmed who has been going through her own cancer treatment; Veronica Luard, Paulette Nichols and Nancy Raphael.

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Nancy has a cousin who is a retired oncologist from Yale. She put me in touch with him and he also recommended getting a second opinion; he gave me the name of someone at Yale, but also said if I could find someone in NY at Sloan or Columbia it would be easier for me, so I will be looking for someone closer to home. Recommendations?

 

In the meantime, my energy levels have been up and down – first time they are down in a while, so taking more time again for rest, though last weekend, Antonio and I drove to see my family in Maryland. My sister came in for a few hours with my nephew, Andy and his wife and daughter. And we also spent the afternoon with Joan, Jayne, my Dad, Florence and later Georgi came by with Paul and Jonathan as well. Always good to be with family! And mid-week, we had lunch with Katia, Janet DeGrasse and Liselotte, other ex-UNICEF friends.

 

After getting my news, Miguel came by and underlined that there is nothing I need to be obsessive about to be back to where I was before all of this started. I can slow down, rest as much as I need, be frustrated, angry, sad… and not have to do anything to please anyone – my real friends will be with me no matter what or where I am in my process. And while I understand this rationally, my emotional side is up in arms! I hate the reality that I will need more treatment and that if I ever get back to “full energy”  –  IF –  it may be a much longer process than I had thought it would be –likely well into 2017.

 

P.S. For now, please don’t panic – I have done that already! If I need your help, I promise to reach out.

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22 thoughts on “Feels like back to the beginning right now

  1. Your only job now is to take care of you. Worry about you and we will all be there when you need us. I love you and am here when you need me. With all my love forever.

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  2. Keeping you in my virtual hugs, and sending you positive energy. I'm moving back (again!) to NYC, Sept 15 (Hudson Heights). I graduate from massage therapy school next week, so if you need a massage of any type, even just a light one or feet is always nice, I volunteer my hands to you. <3
    Marky Mark

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  3. Alan, Ned and I join the zillions of your friends who are sending so many positrons and prayers your way, it will all be good in time. You are a perfectionist, so give yourself and your body a break! You are in loving arms, figuratively and literally.
    Much love, Lee and Ned

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  4. Highly recommend coming to MD Anderson for your second opinion. We love you, Alan.

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    1. Thanks Mich - Hoping for an appointment at Sloan Kettering for now. Have a referral to the head of the brain tumor center. Love you guys!

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  5. Alan Dearest, sending you big hugs wrapped in sunshine borrowed from my sky. Stay well. With all my love.

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  6. Whatever happens, whatever you face, your friends (including Ray and I) love you and will face things with you. Have a good bout of anger for all of us (and with all of us)! Let us know via the blog if you need anything (including accompaniment to treatment.) Love always, Jonathan and Ray

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  7. Dear Alan and Antonio,
    Alan - thanks for update and sorry to hear you're going through this new uncertainty right now. Let me know how we can help in any way. You're in our thoughts and prayers.
    Love Ed & John

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  8. Sounds so disappointing after you had been feeling on the road to recovery. I cannot imagine how difficult it is to make the decision to have to go through another episode of chemo. I hope you find the right solution for you & that you can start feeling better as soon as possible. Thanks for the update.
    Dusty

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  9. see immunotherapy article i forwarded to you that mark sent me. i believe they do it at sloan-kettering. love,florence

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  10. Alan. You are in my thoughts and my meditations. Getting second opinions is the way we have to advocate for ourselves. Also you are in a city of brilliant medical minds. Your spirit is indomitable and so is the love of your family and friends. You have always felt like family. It's a tribal thing. Sending love and more strength. Hugs always from the far left coast of California.

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    1. My dear Alan! I am not panicking but I am disappointed and you have every right to be.... Sending you hugs, Reiki and all the positive energy I can attract for you. Love you

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  11. I am so sorry that you are going through this. I think about you every day. I pray the drs are wrong this time.

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    1. I'm with you - working hard to get an appointment with someone at a center of excellence. Hopefully I'll have that in hand by end of the day tomorrow to see someone later in the week! XOXOXO

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  12. This is your third and last "bad guy". Get your second opinion but I have read that immunotherapy is the way to go. Take care of you and allow your body to rest and sleep. You need it to finish this fight and get on with your life. I love you very much.

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  13. Hi Alan, I am with you during this challenging time. I hope you found a contact now and are seeing them soon. I saw that some of your friends were able to help. Keep positive always. Lots of love, xp

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  14. Hi Alan, you know you are my model. A strong fighter, and an exemplary leader of the life. Your strength and wisdom is guiding you to successful results. I miss you and I love you. A big hug!!!!

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  15. Alan, your Encompass family is with you and sending you all of our most powerful energies for healing. We think of you constantly. Much love to you

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