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Fear and Worry

Fear and Worry

After I was diagnosed with chronic lymphocytic leukemia in 2009, I watched my white blood cell and lymphocyte counts quickly climb. But in mid-2013 they began to plateau. They continue to zig-zag up and down but on average they’re staying level. The leukemia has slowed down. So I’ve tended to ignore my disease and, though I still get tired, I’ve had days when I didn’t even think about my leukemia. I could pretend that my tiredness was just due to a lack of sleep.

Well, at least that used to be the case. Now, in addition to a personal blog about my life with leukemia, I’m doing a YouTube channel and writing for Blood-Cancer.com. Suddenly I find myself thinking about my disease nearly every day. Even when I’m not writing I’m still thinking and planning for the next article or video. It’s pretty much impossible to pretend anymore.

Me and Leuk

If you’ve read my past posts, you know I like to anthropomorphize my leukemia by calling it Leuk. I treat the disease as if it were a real person. This may sound a bit schizophrenic but it allows me to think of the leukemia as someone outside of myself instead of an invisible disease hiding within me. It gives me someone tangible to fight.

Now he is back at the front of my mind and he’s been nagging me.

Leuk has a sister and brother named Fear and Worry. I’ve not seen them for a long time but now, with the daily reminders my writing brings, they are back. I’ve written about Fear several times in my personal blog, always advising to not let her creep into our minds. Fear and her brother, Worry, work together trying to make us concentrate on our leukemia. If we let them in, they become powerful allies of Leuk.

I can’t say I’m overly afraid of dying, although that thought is always hovering in my mind. It’s the worries surrounding that. Will my wife be all right when I’m gone? What about our finances? How will it affect my children and grandchildren? These are the things Fear and Worry have brought back with them. Sure, I’ve considered these things before but now the worry is more constant.

Picking battles to win the war

I don’t intend to stop writing. I love writing. If I quit, I’d let Leuk win. You see, it’s not just a matter of battling a disease to stay alive. What really matters to me is not letting Leuk win the battle for my mind. I can’t let him become the center of my life. Some days he seems to be winning that battle. But individual battles can be won or lost as long as I win the war.

Worry is just Fear trying to be productive. But Worry isn’t productive. It only leads to despair. Whether or not Leuk takes my body, I will not let him become the master of my life. The writing will continue and hopefully Fear and Worry will take a hike.

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

Comments

  • WalterNeely
    1 month ago

    I have Mantel Lymphoma and in the process of beginning stem cell transplant.Do mind letting me know your age?I am 68 years old male.Do you regret having your stem cell transplant?What was your outcome and any lasting side effects?

  • Rondakay
    3 months ago

    I felt so alone until I read your post. No one around me understands what I’m going through. I’m almost 2 years out from stem cell transplant and worry seems to be my best friend. .thanks for your story.

  • Shayla.Oakes moderator
    1 month ago

    @walterneely, what a great question. I wanted to suggest that you go to our Q&A area to ask your question. You may get more responses there from the community. Just go under the menu bar. You will find the Q&A under community. I do hope that you find the answers you are looking for. Best wishes, Shayla (Team Member)

  • WalterNeely
    1 month ago

    Please refer to my questions concerning your stem cell transplant.Thank you so much and may God bless you from your future fears.

  • Yolanda Brunson-Sarrabo moderator
    3 months ago

    @rondakay So many feel alone in this new journey of their lives, so happy you find a bit of comfort here. Best!

  • Jim Smith moderator author
    3 months ago

    @rondakay Thanks for reading my post. I know that feeling of being alone. If you’re like me you don’t have anyone around you who has cancer. Friends and family are a big help but it’s hard to find someone who really understands. But, as this website proves, we are not alone. Also, your oncology center may have a support group where you can meet others going through similar experiences as yours. I’ll admit I haven’t gone to any such meetings but perhaps I will. Please stay in touch and let me know how you’re doing.

  • Yolanda Brunson-Sarrabo moderator
    3 months ago

    We’re glad you’re here Jim! This indeed is a great network of folks. Best!

  • Deb Wesloh moderator
    4 months ago

    I liked your story. Thanks for putting an interesting spin on Fear and Worry. Those two follow me around all the time. I’ve sent them packing a few times, but they always seem to find their way home.

  • Jim Smith moderator author
    3 months ago

    @dbwes62 I know what you mean. I deal with them too. But it sounds like you’re not letting them run your life. Stay strong and fight the good fight. Take care.

  • Deb Wesloh moderator
    3 months ago

    Thanks. You too!

  • Ann Harper moderator
    5 months ago

    Good points. I’ve never given my cancer a name, although I battle it everyday. I also don’t let it take over my mind. I do think daily about the diet I’m on, which I hope is helping me to battle the cancer, but most of the time, I just feel and go about my day normally.

  • Racheli Alkobey moderator
    5 months ago

    I love this quote of yours “Worry is just Fear trying to be productive. But Worry isn’t productive. It only leads to despair.” I truly think with your writing and perspective on this, Leuk and his fear and worry will be easier to subside.

  • Jim Smith moderator author
    5 months ago

    Thanks, @radiant-racheli
    I’ve always been great at worrying. It’s been sort of a hobby with me, even when I didn’t have cancer. Still staying busy really helps.

  • Ann Harper moderator
    5 months ago

    I like that quote too. It gives you something to think about.

  • Carolyn B
    6 months ago

    Worry and Fear… Yup. They’ve been checked off on my bucket list (joke folks).

    I, primarily, deal with these things with information. In a different life I worked for outdoor adventure personal growth programs. One common experience the participants would have is fear of the unknown (they would imagine things far worse than reality was) and once students would push themselves to do whatever it was they were scared of they (usually) found it wasn’t as bad as they thought/anticipated it to be. Someone (if I searched hard enough I could probably find it) said something along the lines of, courage isn’t getting rid of fear, it is facing fear head on and moving forward despite the fear. I think that is more or less what we have to do with respect to fear and worry over this cancer crap.

    I know I deal with worry and fear with information because it gets rid of some of the fear of the unknown…at least then I have some idea what is on the other side of doors number 1, 2 & 3 even if I haven’t opened any of them yet. In fact knowing there are more options than just door number one has served to reduce my fear and worry on occasion.

    I pissed off an oncologist early on because I wanted to know how people died with this (fnhl) and he kept telling me plenty of treatments before you have to worry about that. I wanted to know. I have had breast cancer and I know that is generally a pretty painful death. I wanted to know what kind of death this was (googling that was hopeless – trust me I tried repeatedly. Nobody talks about this). I found out, if I wasn’t lied to that is, usually not all that high on the pain scale. Check off one worry solved.

    And then there were/are days that I can’t/couldn’t see the light at the end of the tunnel because fear and worry shut off the lights and buried the exits. When I was doing my PhD there were times I had to repeat to myself, “There are good reasons why I decided to do this. The fact that I can’t think of any of them right now is not good enough reason to quit”. I’d then focus on putting one foot in front of the other until something changed (and often I didn’t really do anything positive for that to happen, rather I think just the act of picking up one foot and putting it in front of the other (eg moving forward) helps – you know fake it until you make it – such that I (finally) believed yet again there was a light at the end of the tunnel even if I couldn’t see it yet. And there were days were the best I could do was pick myself up and put one foot in front of the other (well and then eat a lot of chocolate and ice cream if I could afford it at the time or had food stamps at the time – grin) despite the fear and worry. You know. That courage thing.

    With time I some how managed to integrate having fnhl (and breast cancers) into part of my life. It became more like unavoidable bad crap I have to deal with, but somehow it is now more similar to crap like getting a flat tire on my way to my the second day of a new job while wearing white pants (yup happened to me), inconvenient, occasionally expensive, occasionally pushing all my worry and fear buttons, but more often than not, temporary. And eventually I’d manage to pick myself up and keep moving forward… although sometimes I need to buy myself a new Klenex box (trust me using Klenex is better than using toilet paper).

    I have found that as long as I don’t put any expectations that I will somehow be able to get rid of worry and fear; that I continue to realize that this is normal; that some days I will do better dealing with “this” than others and then don’t beat myself up for needing to buy more Klenex boxes on occasion, life can be reasonably normal; my emotional life can be reasonably normal – whatever that is. But that takes time, sometimes lots of time.

    And our path through this is likely somewhat individualized, although knowing a variety of ways people have coped with this may help us find our own way through the morass.

  • Jim Smith moderator author
    5 months ago

    @kidsandliz You’ve got it right. The more info the better. When I was diagnosed with leukemia my family doctor gave me the names of four oncologists and described their style. He described one of them as a professor type who’d probably give me more info than I wanted. I said that’s the one for me. As far as I’m concerned there is no such thing as too much information.

    And just like your struggles getting your Ph.D., sometimes when we have doubts we just have to push through it.

    I can relate to what you said about integrating cancer into your life. It’s the same with me and my leukemia. I’ve sometimes had problems explaining that to others. Your white pants & flat tire analogy is perfect.

    Thank you for your comment, I’m sure it will benefit many of our readers.

  • Ann Harper moderator
    5 months ago

    I too think facing your fears head on is important. It’s the unknown that is usually the scariest. I love your comment. Thanks for sharing.

  • Denny
    6 months ago

    Hi Jim,It’s Denny sorry I haven’t checked in lately but I’ve been busy working and fishing.My last Dr.visit in January my WBC went down from 25 to15.We all know how it fluctuates but hearing that is always good.My Dr.also gave me an A+.I don’t think I ever got one in school, but I would much rather have one from Dr.

  • Jim Smith moderator author
    6 months ago

    Hi Denny. Good news! That’s quite a drop in your WBC. And an A+… wow, you didn’t even have to study.

  • Ann Harper moderator
    7 months ago

    I never thought of making the cancer a person to fight – nice. I agree that we can’t let fear and worry dictate our lives. None of us know how long we are here so we should try to enjoy each day. Good luck to you.

  • Denny
    8 months ago

    I read your articles Jim.I’ve had CLL for 4 years and my WBC count is slowly increasing.I do think about my cancer everyday but I try to out work it. I wear my orange choose hope (cancer sucks) braclet. I look at it quiet often and rotate it around. Worry is a big part of my life now fear not so much. We all are going to die someday of something but I certainly don’t want it to be cancer. I stay pretty active running my own insulation company and pretty much work at least 10 hours aday. I like to tournament fish so I really stay busy. I’ve seen people write that they are tired a lot I just look at it as I’m tired from work. Keep writing I’ll keep reading good luck, my next 6 month check up and CBC is coming up on the 23rd, for the last 4 years when I see my Dr. he tells me I’m boring, I really like hearing those words.

  • Ann Harper moderator
    7 months ago

    It is hard not to worry, but like you I keep myself busy. I hope your remain boring – good luck!

  • Jim Smith moderator author
    7 months ago

    @denny You’re right, boring is good. And believe me, worry is a very normal thing to do when you have CLL. I deal with it too. You must be handling it though: ten hours a day is a lot of work. Yikes, I couldn’t keep up with you on that… Way to go! I just hope you aren’t overdoing it. But if it works for you great. I used to fish and remember it as a good way to relax. Perhaps I’ll take it back up. And, I’ll be thinking of you this Summer when I have my floor insulated! Take care.

  • Ann Harper moderator
    7 months ago

    Boring is good! Good luck with your floor.

  • RCGJR
    8 months ago

    Well said. I blog, and blog posts sometimes but not always include a report of my AML fight. Blogging helps me keep my perspective. I am reminded by my blog of how many peaks and valleys there have been, and this reminder is calming.

  • Ann Harper moderator
    5 months ago

    I too have a blog, but it’s hard to keep up with it. Good for you.

  • Jim Smith moderator author
    5 months ago

    I know what you mean. Ever since I started writing for blood-cancer.com I’ve neglected my own blog. I need to get back to it.

  • Anthony Carrone moderator
    8 months ago

    Hi @rcgjr – If you ever want to blog on our site, we welcome you to post in our community story section 🙂 Here is the link: https://blood-cancer.com/stories/. Thanks for sharing and being a part of this community. Warmly, Anthony

  • rusty_vs_cll moderator
    9 months ago

    Great word anthropomorphize! I love how you call it Leuk. I’ve taken to calling my CLL Leuk also. Almost makes it sound nice.

  • Jim Smith moderator author
    9 months ago

    Keyword being “almost”. Leuk’s like a visitor who won’t take the hint when it’s time to leave. The difference is I never invited him over in the first place.

  • bluchs
    9 months ago

    Nichola
    I agree with you completely, reading other peoples thoughts and experiences, who have a common problem.
    Is in fact very inspiring.
    It is a constant battle, some days, I think I am going to be OK.
    And others, I think, this is the end?

  • Jim Smith moderator author
    3 months ago

    @bluchs I always appreciate reading your comments. I’m so sorry you are dealing with so much but you need to know your words are an inspiration to others. You need to know the honesty you give us about your personal struggle is serving a purpose. You have a purpose. You are leaving a footprint in the lives of others. Godspeed.

  • Ann Harper moderator
    7 months ago

    We all have those days. It’s hard. I just try to stay busy – it helps.

  • Nichola75
    10 months ago

    An amazing piece of writing and very inspiring. I agree, it is a constant battle and some days are worse than others. I find reading people’s blogs bring it to the front of my mind. However, it helps so much to read other people’s experiences and that relationship I find so important in winning that war X

  • Jim Smith moderator author
    9 months ago

    Thanks for reading my post. Writing for this blog has given me a chance to meet others dealing with leukemia. Fighting Leuk alone can be a lonely sport. It’s good to know there are other soldiers out there.

  • Daniel Malito moderator
    10 months ago

    @jim-smith “worry is just fear trying to be productive.” Great line man, great line. That’s a perfect description of it and I’ve never quite heard it put that way before. Can I steal it? I’m gonna assume you said yes. Sweet! Ha ha. Great article. Keep on keepin’ on, DPM

  • Jim Smith moderator author
    10 months ago

    Nope. That line’s all mine. Thanks for the compliment. Thanks too for reading my post.

  • bluchs
    10 months ago

    Jim Hi!
    Thank You for your thoughts here about Worry and Fear?
    I am not married, but I do worry about my son, grandchildren, and even my sons mother, my X-wife.
    I can’t help but to worry about how they are all suffering, because of my illness?
    I actually find myself more worried about them, than myself?
    I do fear dying, in some sense, I keep trying to beat this disease, with diet, exercise and Prayer.
    Although, there were times, mostly when I was in the hospital, that I actually, prayed for death to come, because I was loosing hope.
    It never did, so I guess my work here is not done yet.
    I do try to stay productive, I am still able to care for myself, which has not always been the case, with this disease?
    I actually think that this web site, and being able to read articles like yours, and being able to post some of my own opinions, and experiences, are in a sense, my way of being productive.
    This is my way of battling this head on, so I don’t despair?
    So perhaps I can win this war?
    So, just like you, writing down my thoughts, are helping Me, to Not Worry, and not fear what is ahead!

  • Ann Harper moderator
    7 months ago

    Writing and sharing with others has been so helpful to me. Thank you for sharing your story.

  • Jim Smith moderator author
    10 months ago

    Hi Bluchs,

    You are right, your work is not done. It will never be done because you have a family to love. I know your time is shorter than you want but you can be assured that your son, grandchildren and your ex will be okay. Love transcends anything Leuk throws at us.

    Fight the good fight and grab on to the life you’ve been given.

    Take care.

  • Ann Harper moderator
    7 months ago

    Very inspirational!

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