New treatment to begin tomorrow

This is my first post since August – sorry for the long delay – just lack of motivation and effort. I’ll try to be more regular, though can’t promise 100%. Also had surgery #2 at Sloan which was a big set back and step forward at the same time – and wound up in rehab for 10 days at NYU Presbyterian. Now continuing with rehab at home everyday.

I’ll try to be more regular, though can’t promise 100%.

In August, after my 5 days of intense chemo, the new tumors resulted with the following. things got worse before finally easing up a bit, though still not doing fully well. Here is what I am experiencing and still do though happily not to the degree described below:

  • Fatigue
  • Lack of motivation often related to the fatigue – for example to even take a walk I don’t have much motivation; this is now my biggest challenge – do I have the motivation to move forward? Sometimes, I’m not sue I do! That scares me!!!!!!
  • Lack of balance – also related to the above. Sometimes I feel like I will fall, though this has fortunately not happened except for last week while walking to the bank – luckily I did not hurt myself, no damage!. Especially when I face a staircase – and I have stairs in my apartment – I do so with trepidation and when I go up or down, I latch onto the railing;
  • Getting up out of a chair or from the sofa or off low toilets is WORK! getting a bit better. I need to first think about the best way to move, then position myself just right and use both hands to push up whereas in the past, I didn’t even think about it – I just did it effortlessly;
  • Peeing is still a struggle and after I pee I usually have to return to the toilet within minutes since I have not fully emptied myself. This is most bothersome during the night when it disturbs my sleep; today, I peed myself at the bagel shop. Hate it!!!!!
  • Appetite is weird not fully, but not up to normal; on the other hand, when I sit in front of my food, I just shovel it down like Jaws;
  • Swelling of left eye especially when I get up in the morning, that eye has been very puffy;
  • Constipation though that is much alleviated thanks to drugs I’m taking – plus coffee;
  • Posture: I am bent over like an old man, both legs and back, when normally I assume my dancer’s stance; Antonio is constantly correcting my posture.
  • Lack of coordination is severe, very similar to the side effects in Spain when all the process started, i.e. when getting out of bed, or changing position, it takes a while to coordinate well: I need to stop and think through how to move properly. I still lean somewhat towards my right side;
  • Incontinence: I pee myself almost daily.  I just can’t control it. On the other hand, I do well during the night in getting up to get to the toilet.

The good news is that all of the above is slowly letting up.

In August, I had an appointment with my General Practitioner, Dr. Kim. On the way there, walking with Mark, I all of a sudden broke out and was running. I was aware that I was indeed running, but it was strange because I had not consciously decided to run – it just happened. Mark asked me if I wanted to run and I said “No, please stop me!” so he stepped in front and stopped me with a gentle bear hug! Very surreal experience.  This continues to happen. So if walking with me – help me to slow down please!

Antonio reminded me of lots of forgotten details:

  • While he was in Spain, I was taken care of by Don. Katia, Marc Martin, Aalap and Susan Letteny to watch over me at nights and get me to doctor appointments including another MRI where they found a big swelling and the growth of a mass on my right side of the brain, I had to go through surgery. At first, they thought it was a necrosis (a mass of dead tissue) grown as a side effect of the radiotherapy. The pathology results showed it was a tumor that had regrown.
  • I was presented with options post – surgery including going on experimental treatment called immunotherapy with Avastin (see below)

When I left Rehab, I had a serious episode. I had to go for an MRI and a neurologist appointment and, when I woke up, I could barely move and getting there for me and Antonio was a lot of struggle. The moment I arrived to the first appointment my whole body was paralyzed and Antonio had to make use of a wheel chair to move me around. Susan and Carlos came immediately to the neurologist appointment. The MRI showed that new tumor growth was occurring in the right side of my brain two weeks after surgery and, as a result, there was a big swelling in the right lobe of my brain. I’ve been on steroid for the last two weeks, my mobility is back, the lack of facial expression as side effect of the swelling is almost gone and my emotions are starting to show up again. Feeling better everyday. One of the conditions to be part of the immunotherapy trial is that I have to be able to do things by myself and that started to happen before I saw my medical met my medical team Tuesday last week.

Katia has been coming almost daily with pain au chocolat and cappuccinos from Maison Kaiser. I’ve had a few visitors, not many, I could barely talk and felt very exhausted. Susan Letteney, Nancy Raphael and Sandra have been some of the few that came during these days.

Miguel flew in from Amsterdam for 3 days and helped so much with helping me to do some basic stuff and organizing my life. He’ll be back in October again.

In the meantime, daily I have Occupational, Physical, and Speech Therapy plus psychotherapy that helps me to process this all – it’s overwhelming. I have a daily home health aid who cleans, shops, and just helps on daily activities. All so needed.

Other random acts of kindness so appreciated:

  • A massage from my neighbor Lili and a gift of a massage from Nancy Raphael and Kenny to OHM Spa
  • Having a mani-pedi at the spa last weekend;
  • Reiki from Cyrus;
  • A gift certificate to Jean George from Cyrus – was gonna use this evening, but postponed until I feel better.
  • My niece and kids driving up from Philly for the day, bringing food and treats.
  • My sister and nephew driving up for the day and bringing my dad and Florence
  • Jayne and Georgi and driving up for the day and bringing my dad and Florence
  • Michelle establishing a fund at Sloan in my honor and raising over $7000 and then flying in from Texas for a weekend with her daughter, Rachel, my god-daughter.
  • Don coming to Fire island to help start to close the house along with help from my neighbor, Tim and Eric Sawyer;
  • Ellen Saad has been amazing in calling and showing her love. She is a treasure I appreciate more than she can really know!
  • Got a gift of a Senegalese meal (cheb-o-gen) from Mame Diagne who sent her son from Connecticut to Harlem to pick up the meal and deliver. Delicious!!!! Again, I inhaled it – like I do too much food. Gotta slow down!!!
  • That’s just a sample of how amazing people have been!!!!

I took a few weekends to head to Fire Island for a break from all of this madness and will work to make more progress each day! Not easy at all!

Much progress over the past week – combo of drugs and work (PT and OT plus speech therapy and psychotherapy.)

With the Sloan team we agreed to start an experimental treatment tomorrow: immunotherapy plus avastin. Will go on for quite a while – let’s see how my body responds!

https://www.cancer.gov/types/brain/research/immunotherapy-glioblastoma

Not proven yet, but hope – I can stop anytime if not working or affect too strong. But very happy to have been accepted into the trial.

Treatment advances for patients with glioblastoma, an aggressive form of brain cancer, have been rare. But recent studies have raised hopes that immunotherapy, which has recently established itself as a proven therapy for several types of cancer, may be able to reverse this trend.

Let’s see, but time to try something new!

Had a chance to speak with my Peace Corps friends via face time over the weekend at their reunion in AZ – next time I hope, in person!

2 weekends ago, was a rainy few days on Fire Island with just Antonio and me – perfect relaxation.

And now started with a new health care company after a disastrous week with another company – too many details to include here. For now.

Coming back to a semblance of normal life. Dinners with friends, Went to a movie for the first time last week. Even taking showers by myself again. Wednesday last week, went out to dinner at a restaurant – first time with Antonio and Miriam. Although, overall good to do, it was a sensory overload and I found it hard to engage in the conversation. Today, went for breakfast to Brooklyn Bagel and then for lunch to Lucky Burger for a Veggie burger. After that, we went for a massage (already talked about it from Nancy and Ken, thank you both!) Some light at the end of this horrible tunnel.

By the way, for those who continue to write or call Antonio or me directly, please don’t expect a direct response for now – just too much to handle for both of us. Sorry!

Other gifts: orchids from Seth and Andréa, and from Susan Locke and Stefanie and family. Pics below, but after peak – they are all fading QUICKLY.

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Tics: I still have a few too many. Example, I scratch myself way too much.

The support of Antonio is just too much to take I; his love is amazing.

To conclude for now, I get overwhelmed – too much stimulation – especially outside. I need to be careful to keep from distractions. Getting better though. And I’m walking more and more to get around.

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27 thoughts on “New treatment to begin tomorrow

  1. We continue to follow your journey and we think of you often, neighbor! Thanks for keeping us posted. All the best...

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  2. Good to have you back on track dear Alan! We pray and send the light for your recovery in my healing group every week. I know the journey of return to full health could feel long, but everyone starts with baby steps. Treat your self like a baby, the newly reborn brain of yours will learn how to stand up and walk effortlessly and you will shine like a lighthouse soon again. Hugs~Vik

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  3. Meu querido Alan, good to have some news from you. Sending positive energy towards you to give you strength and energy.

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  4. Happy to read you dear Alan - seems, with this post, more motivation is coming back :). Happy to read about the beginning of the immunotherapy! Hugs and strength from Rome - waiting for Seth and Andrea to come back to me after they abandoned me all weekend for Puglia! ;} xp

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  5. I'm so glad to finally see this new entry. I haven't commented before, but I've read every one. Alan, I want you to know that I have kept you in my daily prayers since you first told everyone on FB. I
    remember you so fondly from high school, especially drama and the plays we did together. Now I stand in awe of your strength.You will continue to be in my thoughts and prayers with much love from Baltimore.

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  6. Darling Alan, best of luck with the new treatment. I will fly out whenever you tell me to but don't want to take up time and energy that you need right now. I hear Antonio is totally wonderful!

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  7. You are beautiful and brave and beloved by many dear Alan. Thinking of you ALL the time, hoping, loving and praying....for you and your angel, Antonio

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  8. Sweet Alan and Antonio,
    Ned, Drew, Bridget and I hope to visit for a short while, maybe the Saturday or Sunday after Thanksgiving. Can't wait to kiss you!

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  9. You are on my mind always! So happy to hear that you are able to get out and enjoy yourself. Send my best to Antonio and hopefully we will see you soon.

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  10. darling alan, so wonderful to hear from you again. It has been too long without word from you. Time is a healer so try to have a little patience. easy to say not so easy to do. so eager to see you just waiting for the proper time for you Love you sweetheart and I am hoping that soon we will get to see you. Please keep in touch we hate to bother you.9

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  11. I love you too! But you don't need to tell me if you love me back. 'Love means never having to say [... you love me]. '. direct quote from novel 'Love Story' by Erich Segal.

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  12. Alan, good to read that you are doing better. Luiz and I would like to come visit you. Let me know when is good for you. This weekend I am in CT. The following weekend. We live close by 25/9 Fais moi savoir.. bises and love Jean-Luc

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  13. Full of love and admiration for you! Can't begin to imagine what all this must be like and am grateful that you have Antonio and wonderful friends beside you to support. Reading you still seem so active and busy between therapies and going out despite the change of pace. Sending much love to Antonio and you xxx hopeful that the new immunology works. Hugs and kisses Marianne

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  14. Habibi Alan, I am sure you heard my sigh of relief when I received the blog notification.... Focussing on the fact that all the symptoms are letting up and improving, and that dear Antonio and all your wonderful friends are with you. Sending you regularly Reiki from across the ocean. Hugs

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  15. Dearest Alan,
    You are in my daily prayers and I know you will pull out of this ordeal stronger. Sending you healing thoughts.
    Big hug

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  16. So glad to read your posting cuz. Have read it several times. Matt and I are trying to get up there to visit. Much much love to you from both of us.

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  17. Was in NYC the other day and waved enthusiastically and intensely in your direction. Hope you felt the love and appreciation I was sending to you. HUGS.

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  18. Dear Alan, thanks a million for the update. We missed you in Sedona and I'm glad we were able to connect via face time. I am in the DR and heading back home today. Think about you a lot. Irene and I would love to visit and will wait for a signal . For now we want t
    You to have and conserve all the energy you need for your recovery.
    So happy to hear you have been accepted in the program for the immunotherapy.
    Cheers!
    Pape

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