CLL Support Association
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In Denial

I guess I am in denial about the whole thing, I'm 78 years old, a jazz musician and playwright. I lost my beautiful wife to breast cancer 12 years ago she was 48, lost my brother to cancer he was 37 I was 27. My father died of leukemia at 57. So I'm here in Mexico for now playing jazz 5 nights a week. I smoke, I drink, I eat healthy, excercise and pretty much not concerned about the CLL, discovered by a simple blood test, told the doc I'm feeling tired. Of course if I don't feel well I wonder if it's the CLL or just not feeling so great. I know this sounds crazy, at this point I don't really care. I'm in the W&W period, I things get worse I would refuse treatment, wish I didn't know about it! Thanks to you all, take care, we all have something.

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A rough deal Flugel. I hope you hold on to the good times and memories of your loved ones. Enjoy life and the music while you can. Think long and hard if/when treatment decision is time, while you have the right to refuse, please consider taking it as it may give you years more creating new memories, playing more music and storing more memories till you time to move off this earth and reunite with loved ones comes.

UK Sparky

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Thanks much, I am enjoying, love playing music, jazz, trumpet/flugelhorn, playing working much here in beautiful Mexico.

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Hi flugel I guess Im the same as you in denial as far as CLL That is. I have Ankyolosing Spodyolitis. and COBD. so Cll gets in the back room of my mind. I have just taken infusions of the drug remintide to knock out my imunime system to control the imflamination of my spine in ankyosing spyodilits .

Knocking out the immune system is a dramatic action as far as CLL goes but right now the pain of AS is more important than my CLL First tests have indicated that infliximabe has had no bad results as far as my latest tests have shown. I believe CLL will not be an issue for me , to many other issues to worry about at this stage.

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Sounds like really a rough time, I hope you have caring people around to help you through this. I just try to live each day, for me it's mostly loneliness a different sort of pain. Take care.

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Hi Flugel1.

Sorry for your news. My diagnosis has been one long slow shock at 46 years, I guess your years bring different perspectives, not least of those departed and dearly missed.

Is your jazz music a mix of styles or a particular style? - who were your big influences? Is any of your group/band's(?) music on YouTube that we might hear it?

A dear friend, retired surgeon, semi-retired orthopaedic researcher, told me one day, aged 86, that he had been really stupid; feeling rather weary he had allowed himself to be referred for BMB (bone marrow biopsy), and now he learned he had leukaemia.. (I think it must have been an acute myeloid variety, so poor prognosis) .. "What use is this to me?" he said, "Now I must live my final days in full knowledge of this issue.." We ate cheese and drank wine in the sunny garden that evening. Lovely guy.

He was kicking himself, since he was set on going quietly in his sleep.. without suffering. He had enjoyed, as we say, 'a good innings' (a long life). Enjoying life to the full whilst he could, quality of life being all important.

I reflect that at 86 years, healthy if somewhat frail, a retired surgeon, he likely knew quite well the treatment options for AML 10+ years ago, and correctly the diagnosis was of dubious value or benefit to him, only a distress to his wife, and sapping pleasure from his remaining months.

You are younger. CLL is not AML, and there are now many treatment possibilities. Of course, you must know your own mind, and diagnosis does not improve the quality of now, but when the doctors say it is time for treatment, it may make sense to hear them tell you the likely prognosis and consider treatment. An extra year or three of 'borrowed time' fits well, to my mind, with a man who plays syncopated music.

All best wishes for continued jazz and enjoyment.

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Thanks for the write, as far as jazz infleuences, first was my brother, he played tenor saxophone, as I said 10 years older than I. When he got drafted and went to the war in Korea I wanted to surprise him and be able to play the trumpet when he returned, I had all his records.

The first influence was Chet Baker, then Miles Davis and Art Farmer who I got to hang out with and tought me stuff one to one. I was lucky to hear them all many times in person living in NYC. I still love all their playing.

Here in Sayulita Mexico I'm playing/working almost every night with some wonderful Mexican musicians. If you google Stephen Goldberg Playwright, also No Walls, you will find some stuff about me, I am on Facebook but rarely look at it. Thanks so much for your interest, communication is everything.

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Thanks for your write and communication. As for my jazz influences Miles Davis and Chet Baker many more. Years ago I played in many R&B bands when horn sections were the thing, ala James Brown. I'll deal with the CLL when and if symptoms appear.

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Please ask your Dr. about Imbruvica. I felt kind of the same way you did and I told the oncologist I wouldn't take the IV drip. He suggested this pill and I've been on it for a year and a half with good results.........blood work is almost normal now for 6 months or more. All you do is take 3 pills a day. I hope you'll ask about it since it certainly is easy to just take a few pills every day. I also have to have blood work done every two months to see how I'm progressing, but that isn't too bad either. I'd hate to see you give up when there are treatments out there that don't make you really illl like the old treatments did. Please don't give up!!!

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I love your attitude and your lifestyle. It's called being true to yourself, I believe. Why suddenly change things now at 78; we all have to die of something. It's not about "fighting" it; it's acceptance. And you've done that, and more importantly, still doing what you love. I admire you. Thank you for your post.

Warmest regards,

Sue from New Zealand

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Thanks for your replay, it means much!

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I'm 79, guitar player for 65 years, still playing R&B, Funk, and blues in clubs in my area of Atlanta with my son and band, and have CLL/SLL. I did not present with symptoms when d'xed at 78 last year but nodes were enlarged, , and, after denial period, took 6 Rituxan/Bendamustine treatments this year (piece of cake), and had no side effects except intermittent fatigue, 2 (1 hr) naps a day, woke up refreshed. Now in remission. Wife is gone also, and I live alone. Went to vaping instead of smoking (24mg nicotine e-liquid.) I had already stopped whiskey and went to drinking wine a few years ago. Looking forward to playing keeps me going, as that experience is so ethereal here on earth I didn't want to give it up. Best of luck man, wish I could request you play "My Funny Valentine" or "Laura". Yo hablo Espanol tambien.

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Hey thanks for the write and understanding, it sounds like we have much in common, I have a gig Saturday I'll play Funny Valintine for you, it will be floating in the ozone. I have played in many R&B funk bands during the horn section days, not my thing but it was work and fun, not crazy about doing "steps". The Jazz group I had with my late wife (Rachel Bissex, on YouTube) did a tour opening for Ray Charles.

I'll keep an eye on the CLL, they want to check me once a year, so far no symptoms that I know of. Take care and stay in touch if you like.

Stephen G.

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Been loving and listening to Jazz for 60 years also, and even though well educated, still can't read music and play by ear (although I figured out the math on guitar early on, so could always position play.) I know all the chords and the notes within, and all the scales, and can read chord charts, but as interest in jazz by public waned after the '60's, I couldn't find any groups to play with in my area so couldn't develop technique. But, as classic Funk and R&B are still popular in Atlanta, we can find some work.

I basically wanted you to know that treatment is nothing to be afraid of, and side effects are nil for most folks; and, for those who do experience them, there are effective painless treatments for them. At our age, we are on the short end of lifespan anyway (comparatively), so if you can play and get gassed out as often as possible, that is the greatest therapy anyway.

Best of luck Steve.

Ted

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