Day in Maryland

It’s Wednesday morning and, today, early afternoon, we will be on the road back to New York.

As much as I love visiting family, it is exhausting having to give so much energy – even if just sitting and talking. Much as I want to be ready for a ‘normal’ day, I’m not quite there yet. And I know that I have been less than patient and probably a bit annoying to my family here. Taking that 2-hour nap yesterday afternoon, away from people and TV was healing.

My sister came in from Potomac, Joan stopped by for a brief visit, Florence was here during the day and again later in the evening was with us when we went to dinner for crabs. We took my Dad for a much needed haircut and stopped by Bed, Bath and Beyond as well as Home Depot. In the evening, my Dad was watching his TV shows – mostly cop shows. All in all, too much for one day for me at this point in my process. By 10:30, both Antonio and I were ready for bed.

I also had a long discussion with Ashlei, my Dad’s Veterans Administration paid home health aide who is supposed to, among other things like preparing his breakfast, helping him to dress, shopping for food, etc, keep the house clean; but each time I am here, I see that she neglects to clean the bathrooms and kitchen. My Dad just doesn’t see the accumulation and while Ashei is great and has a warm relationship with my Dad, she needs to focus on her job and make sure that his house is clean – his eyes are not so good, so he doesn’t see the mess that is here and he deserves to have a clean home. No, I’m not expecting perfection, but dried poop on the toilet and the floor around it is just not acceptable. That too, took energy and I got a long text message from Ashlei saying that she did not appreciate my telling her what to do. I felt it again this morning when she showed up, although she did clean today to a much higher standard. Let’s see if that continues.

So even with the nap, I was exhausted by the end of the day and look forward to more relaxation back in New York. This evening I have an acupuncture session that I also hope will help me to regain my balance.

When I sent the last email, one thing I did not mention was that Dr. Silverman told me that I should expect few if any side effects for the first 2 weeks and that coming and going for radiation should be easy to do on my own- it will only be after the first 2 weeks that I will begin to feel the cumulative effects of the treatment, and that is when I will need to be accompanied home. So for now at least, I should be good. I will send that link for people to sign up to accompany me starting around May 25 through June 23, the last day of radiation. Stay tuned!

On the message front, received some wonderful emails. The first is a video card from my EnCompass family – love this!:

may4-2

The next is a poem from Steve Cadwell:

SILVER BELLS ARE RINGING

MIND
FULL
MINE
FULL
MIND
FULL
OF
LOVE
CHIME
RHYME
PEALS
OF LOVE

LOUD
AND
CLEAR

DEAR
ALAN
SILVER
MAN

And this from Andrea Pastorelli in Rome:

“Thank you for continuing to share updates and your news. Every time I read your emails I go through an extreme and opposing mix of emotions. I am happy to hear you so strong, resilient and positive, as we all know you to be this kind of person and no one is surprised to see you deal with this situation the way you are doing. So every email has a positive piece of news – which needs to continue to happen! But then I get angry and I think this is too unfair, that a person like you, both emotionally, spiritually and health/diet wise so special, should not be going through this!! At least know that we are thinking about you all the time and sending our love. As Seth said in his email, we have lit candles in a number of churches in Rome, before and after the operation. And I will continue to do that, until you can come to visit us in Rome and we can go (light) one together!

“I was happy to know you had your Fire Island weekend, even though you weren’t feeling totally yourself. Your friend is right, you need to allow yourself to feel shitty and down and tired and all of the roller coaster of emotions that you need to go through right now. Think of what YOU need for now, prioritize yourself.”

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7 thoughts on “Day in Maryland

  1. Hi Alan
    Been thinking of you daily and following your journey closely with hope and great interest. Having been at the side of several friends and family waging the fight against cancer, the one thing I know is that now is the time for you to become very selfish! Save your energy so that you can fight the good fight. You don't have to worry about appearing impatient or uninterested! This is YOUR moment and everyone should understand that you are in a struggle.
    I love family and they always come first except when You need to come first. You have a lot on your mind and at the same time need time to organise your thoughts, feelings and energies. Remember we are all on your side but too much enthusiasm on our part can create unnecessary hurdles.

    A lutta continua!
    Much love
    P

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  2. Dearest, darling Alan,
    I read all your emails with amazement and appreciation for all you are going through and sharing with us and how beautifully you are handling this. I have no help to offer except thinking of you with lots of love across the continent.
    You are blessed (deservedly so) to have so very many diverse people who love you and want to support you through this. Know that we are all here for you and you are much loved.
    Sheila

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  3. I might also add if I may that my Yoga Swami, Sivananda would say something like

    'one can only experience pain and disappointment through the mind. We are MORE than the mind, and if you are presence you can feel all those other things we are, and aren't, and the true self without comparing this or that, past or present... those comparisons don't really exist, only in the mind that is not present.'

    I just love this thought, so I wanted to share.

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  4. Dear Alan,

    I'm thanking God for your courage and strength as you face this
    illness, and also praying that He will give you refuge in the shadow
    of His wings, so that you will feel his lovingkindness and his
    presence with you.

    Love,
    Nora

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  5. Dear Alan,

    I read all of your letters, but don’t reply often because you already have enough on your schedule! Maryland trip sounds exhausting. I did not know that your father was so needy now but I am sure he is in his 90’s and that is hard for most people. I wanted to tell you that Fred’s father is in the same boat…with a VA home health aide…or aides …who come and go, along with a couple of others who are covered for now by a long term policy with home care that they wisely got awhile ago.In any case, they face the same situation, with less than competent (not even CNA’s) doing the care. They work as little as possible and do not REALLY care as much as they would like to have you believe. They would get fired in a nursing home setting where standards are more strictly maintained. Still, it is better to be at home. They get paid so little…and some of Fred’s Dad’s are quitting because their Obamacare premiums are going up and they can’t pay their bills! If only our society valued those who do what no one else wants to do….

    So you have every right to complain about cleanliness issues….you could actually report them if you wanted, but most likely to no avail. Fred’s parents live in a building on Long Island where most of the condo owners have these aides….and they more or less have their own little culture within the place, going from one person or couple to another. You have to be vigilant…we caught on stealing by using their credit card, and another doing some bad stuff on their computer. Be vigilant and don’t read the “”warm relationship” as 100 percent sincere. I hate to be negative, but you have to care for your father and demand a basic level of professionalism.

    You have more friends than anyone else I know!!!! People flock around you as you so well deserve. Not to belabor the point, but not appreciating your remark is just too damn bad. Letting your dad be in an unhealthy environment is borderline abusive. Hold her to task!!!

    I love you
    Buffy

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  6. Hi Alan,

    Thinking of you all the time so it's nice getting updates.

    I am amazed by your energy, didn't you just have surgery? I think that relaxation is in order and hearing about your recent visit to Baltimore it sounded more like a marathon.
    You fit more activities into 2 days than most of us do in a week. That said I'm sure Chester loved every minute! I know Joan was so happy to see you and said you look wonderful!

    I'm relieved to hear that the radiation will not cause discomfort and that you won't be going for treatments without a friend. Listen to your body and rest! I know what an overachiever you in every aspect of your life.

    Please let us know if there's anything we can do to help in any way.

    Jayne

    P.S Speaking of overachieving, I remember you doing my Science Fair project. Remember the layers of a tree? Thanks , it was very well received, lol.

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  7. I am glad you are so strong willed to take it one day at a time, ALAN.

    That is all I could do when I had my encounter with liver cancer!

    You have the right attitude.

    StY STRONG, MY Friend!
    Arnie

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