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Man sailing on a small boat in a large sea of information


My long-term memory is still pretty decent (I think). I can still solve a quadratic equation using formulas I learned almost 50 years ago in algebra class, and sing the lyrics to all the great rock songs of the seventies. For some reason though, I can’t recall the name of someone I met an hour ago, or the name of the new restaurant I heard about this week from a friend. In a word, my short-term memory “sucks.”

Could you repeat that again?

Another thing I’ve found I’m really bad at is recalling the prefix to any of the “tumumab”, “omib”, “zumab”, or “lanidomide” drugs used on multiple myeloma, or being able to match generic names to all of these. Heck, I have a hard time even pronouncing some of them.

Thank goodness for all the information and advocacy organizations out there like Health Union (and, and so many others. The resources these organizations have are phenomenal, and especially good for memory-challenged people like myself.

I am always so amazed as I listen to podcasts. The presenters (many of whom are patients just like me) can rattle off all the drug names, know which gene mutations are affected, explain proteasome and HDAC inhibitors, and discuss the most current immunotherapies with ease. It is still so mind rattling to me, but I continue to try to understand as much as possible; maybe too much…

Waves now, tsunami on its way?

For a while, I now have found myself not only spending more time on the advocacy sites, but also on several of the other talk group sites, mostly Facebook. What I have noticed is that I am getting, what I think may be, information, notification, and emotional overload.

The “overloads” are hard to explain, so I am hoping most of you reading this are thinking “I’ve been there, I understand”.

The two easier overloads for me to “explain” are information and notification. They are both under my control and directly proportional to how much I am trying to absorb, and/or my lack of self-control in not turning off notifications and my iPad. I struggle with what a good balance is, on how much I “need” to know, versus how much effort and time I should be investing. All I know is that I feel out of balance right now.

The emotional overload thing is a little harder to get my hands around, and in some ways is tied to the knowledge side of things.

Paying it forward

On one hand, I love being an advocate and support mechanism for anyone going through what we have experienced and continue to go through. I have a need to be a voice of support and want to put myself out there to help. I know when I was going through the worst of things, a kind word, a piece of information, or personal story relating to me, helped tremendously. Being part of the Health Union and team continues to center me. I want to pay that forward. This takes knowledge and information (see my previous comments) and empathy (which I’ve been told, I have no shortage of).

On the other hand, I have found that being part of the blogs and talk groups can be like riding an emotional roller coaster. On one notification, I’ll see a story of success and gratitude, and on the next, I’ll see the photo of a someone’s child going through h*ll. In either case, I find myself very invested, reading the post or blog, and comments, asking God to give me the words to say, and respond or not respond appropriately (I hope). I feel I have been called to do it, but to what extent?

Nothing profound here

At the end of some days, I feel emotionally drained; and believe me, this doesn’t include dealing with the daily ups and downs of my own disease.

Also, I sometimes feel like when I write as an advocate, my duty is to come up with a “solution” or profound piece of advice. I would say in this case, I probably have only done some self-counseling by getting it on paper.

If I have any advice, it is “everything in moderation”; a non-profound, overused saying, but appropriate in this case. This balance of knowledge and emotion to mental well-being is individual and part of that “new normal” we all must find. Be as involved as you can or want, because people just like you need people like you to guide them.

I may be lagging behind others in some sense but will remain in the search of that balance until I find it, or it finds me.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Racheli Alkobey moderator
    3 months ago

    You are speaking the words of my mind (however I probably couldn’t solve a quadratic equation). Thank you for speaking this truth and sharing it with the interweb!

  • bluchs
    3 months ago

    Mike, Overload, You Think?
    Thank You for your thoughts.
    Short term memory loss, I sometimes get up to go to the bathroom, and once I am up, I forget what I got up for, or where I was going to go do???
    I never even thought about blood cells before, but now, I know about all of them, what they do, there abbreviations, how they are reproduced etc. etc.
    I had no idea what a spleen was for, or even where is was, until I was told mine was enlarged and they wanted to remove it.
    Now I know all there is to know about my spleen, and yes I still have mine, I got a second, and even a third opinion about removal, and chose Not to Remove Mine, it still hurts a bit, but it is what it is.
    Emotional Overload, WOW! Yes, Yes, Yes.
    Support groups, I found several on line, this web site and the CLL Facebook post are, for Me, the Best form of support!
    I have gotten some good advice and lots of prayers and good wish’s from both.
    It can be a bit of a roller coaster though.
    I am facing a possible stem cell transplant, and it scare me to death.
    I have read some success stories about, it but I have also read about some nightmares about it??
    So I am scared and, I am still not sure what to do, But I do know, I can not just keep getting blood transfusions every 6 weeks?
    I wish, I could find a new normal, things keep changing so fast, I don’t know about normal any more?
    I would love to find some sort of balance in my life?
    If I ever get stable or into some sort of remission, I will do some sort of cancer related volunteer work, even if just to hold someone’s hand during chemo, and listen to them.
    I would find that very therapeutic for me, and hopefully uplifting for them?
    But for now, I just need to live on and keep fighting this terrible disease.

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