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View Diary: Monday Night Cancer Club: Happy 2nd Birthday to Us (37 comments)

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  •  Thank you and (9+ / 0-)

    yes, it's a long road ahead.  AML has to be treated very aggressively with really toxic treatments.  He's young and otherwise healthy, which is a huge help.  But it's almost all inpatient stuff and will take a year - or more.  

    I have an anxiety disorder.  (OCD with medical anxiety).  So I lose my mind, so to speak, at every test.  He's had bone marrow biopsies frequently and those are going to continue, and the anxiety is hideous.  I don't know how to manage it, but I have to - to survive and to make sure I don't upset my son.  This is about him - not me - and I have to be careful to figure out how to deal with this anxiety.  I know some of it is unavoidable.  For me, this is a particular nightmare.  I have feared leukemia in my kids since they were born and it is simply surreal to have it happen.

    My son is depressed over being unable to work - he'd just really begun to get going on some film editing work after three years of seeking jobs.  I am trying to keep him as positive as possible.  Because of the neutropenia, he can't see people or go to public places - for a while.  The isolation is also tough.

    Justice For Will Will spent his brief, courageous life fighting for the rights we all take for granted. Please share his story to support the fight!

    by KibbutzAmiad on Mon Oct 07, 2013 at 06:13:35 PM PDT

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    •  Zanax has been my best friend through cancer. (6+ / 0-)

      I was at a workshop of mostly caregivers a while back and they were saying that in the future (as in starting now) a cancer diagnosis will include a mental workup.

      I have always said that when being told you have cancer your doctor should be handing you a script for an anti-depressant or an ant-anxiety at the same time.

      I think the same is true of caregivers. I go to Gilda's Club where caregivers are welcome to go to any workshop, class etc., but there are also special support groups just for caregivers.

      Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

      by ZenTrainer on Mon Oct 07, 2013 at 06:41:56 PM PDT

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      •  Yeppers! (4+ / 0-)

        I agree with ya ZT mental health evaluations should be included in cancer work-ups.  I was prescribed Ativan as a part of my chemotherapy anti-nausea drug battery. I only have taken one capsule so far but we all know that we are one phrase away from bouncing off the walls with anxiety.  

        "you have a recurrence" would definitely wind me up for sure.

        Life is not a problem to be solved but an adventure to be experienced.

        by DarkHawk98 on Mon Oct 07, 2013 at 08:14:55 PM PDT

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    •  Oh and my therapist is also trying to get me to (8+ / 0-)

      do a special kind of breathing. For 4 minutes, 4 times a day, you:
      ~breathe in to the count of 4
      ~hold your breath to the count of 4
      ~exhale to the count of 4.

      This is to help me be less anxious and sleep better.

      My reaction? 4 minutes? I don't have that kind of time!

      Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

      by ZenTrainer on Mon Oct 07, 2013 at 06:44:28 PM PDT

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      •  This is one of my standard exercises for singers (4+ / 0-)

        and for choirs full of singers (i direct choirs for a living), with a few wrinkles:

        a) start by exhaling first over a count of 4 (you can hiss gently if it helps you think of a balloon deflating).

        b) then hold empty for 4 counts (if you have a metronome, set it to 60 beats per minute: or just use a second hand)

        c) then breathe in for 4 and hold that for 4 ...

        THEN ...

        start the cycle over again, over a count of 5, then 6, and so forth. if you start to feel dizzy, STOP!

        in chinese, the two ideograms for breathing are given in a specific order: hu/shi. this translates as "exhale ... inhale," a very Eastern expression of the idea that we empty first, and only then fill.

        hope this helps.

        In times like these, we cannot make too much music.

        by ProvokingMeaning on Mon Oct 07, 2013 at 09:21:40 PM PDT

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    •  Best of luck to both of you, KA (and hugs) (5+ / 0-)

      Of course you lose your mind with worry--you're his mom!  You have all the fear of a loved one compounded with the fact that your little boy is suffering.  You'd have a real problem if you weren't so affected.

      For both of you right now, so much in your lives is out of your control and sweeping you along.  When I've been in your situation, the biggest help has been to focus on those things I can control, whatever they may be.  Run what you can with an iron hand.  If anyone tries to take over and you don't want them to, it works to explain that there are certain things you have to do for your own sanity.

      And don't forget the power of human touch.  When you're at risk of infection, most people are scared of infecting you, so they sort of wave or pat your sleeve.  You get really lonely, even with people all around.  Even if you have to glove and gown up, big hugs do wonders.

      "I speak the truth, not as much as I would, but as much as I dare, and I dare a little the more, as I grow older." --Montaigne

      by DrLori on Mon Oct 07, 2013 at 06:46:03 PM PDT

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    •  I feel for him, having to deal with this just (5+ / 0-)

      at this moment. No time is good for getting this sick, but clearly this isn't optimal.

      There are some increasing supports for young adults with cancer, especially with the blood cancers; has he been able to check into any of those? He might find them encouraging.

      I hesitate to make any suggestions at all about coping strategies for anxiety, since I am inferring from your comment that you have been dealing with this for a while and thus have a lot of experience with what does and doesn't work for you. But I'll venture all the same, and of course it's up to you what you do with any of it.

      I haven't had to grapple with the kind of challenge you have here, of having one of your worst medical fears come true, on the part of your children. However, I have had a "worst fear" come to pass in another arena, though I believe it's probably not as challenging for me as it might be for you (primarily because it doesn't involve my children).

      Oddly enough, having that "worst case" scenario come to pass was liberating for me in a way. I no longer had to worry about it since it had actually happened, if that makes any sense.

      That watershed also allowed me the space to think about my true lack of control over the situation. I wasn't to blame; I didn't cause it; I couldn't prevent it. The worst came, and in the end I could cope.

      I can only imagine the challenges that your son will be facing in the next year or so, just as I can only imagine what you'll be going through. But I do have confidence that you can figure out what you need to do to keep going for yourself and for him.

      Please be kind and reassuring to yourself. And please feel free to say hi, keep us updated, come ask for support, anything you like.

      Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Mon Oct 07, 2013 at 06:56:33 PM PDT

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    •  possible idea about anxiety (4+ / 0-)

      and apologies if this is something you're already familiar with....

      I found some relief from using Mindfulness Based Stress Relief techniques from the program that was developed by Jon Kabat-Zinn. Many therapists incorporate some of these ideas. At times of terrible stress like you're facing it's a lot easier said than done to take time out to practice those things. And of course that's exactly the time a way to cope with the stress is most needed.

      I whole-heartedly agree with Kate:

      First, you must take care of and pace yourself.
      In taking care of yourself you'll be giving yourself the strength to help out your son.

      I'm sorry both of you are going through this hard, scary time and send wishes for strength and comfort for both of you.

    •  Isolation is one of the worst elements -- (1+ / 0-)
      Recommended by:
      peregrine kate

      My family has been living with cancer and the aftermath ever since my son was diagnosed with neuroblastoma at the age of 2. He's in remission now but the after-treatment is almost as time consuming as the original. My situation was probably much different than yours -- in particular, I can't begin to imagine how much more complicated it must be to parent a young-adult cancer patient. I've tried to imagine it, as my son has a 60 percent chance of developing leukemia in his 20s as a side effect of chemo, but I find it's just too big to try to wrap my mind around and end up focusing on the here and now.

      Regardless, I hope this group can support you in whatever way possible. If you need someone to talk to, I'd be happy to converse further via kosmail. Best wishes!

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