Author's Note

I hope that this blog will inspire you and renew your resolve to overcome the fear, the pain, the overwhelming sense of dread that you may have found yourself in. If I can make you laugh, cry, or have some personal realization about your own situation, I will be incredibly pleased - for you.
"Life isn't about waiting for the storm to pass. It's about learning to dance in the rain." - unknown

Thursday, March 18, 2010

Hiccups and the Thorazine Shuffle!

July 2008

Oh god!

Dave has been having uncontrollable and violent hiccups.  We think its tied in with him being so profoundly constipated.  But we aren't totally sure, except that when he can have a bowel movement the hiccups seem to go away for a couple days.  So we "think" its gas building up with no place to go, but what do we know?  Dave has several things working against him.  The Myeloma causes constipation, as do the narcotics and the Thalidomide he is on to beat back the Myeloma.  Add to that, general inactivity and poor Dave is just like a salmon swimming upstream on this.  He is already so annoyed with all the pills he has to take and now he needs to add things to help him go to the bathroom.  He keeps wanting to treat it like its and "acute" condition vs. a "chronic" one.

This is where, as a caregiver, and a wife, I get tremendously frustrated and aggravated with Dave.  I tell him and tell him and tell him, what is going on, how to address it, how to handle it, and he doesn't do it, does his own thing, and then gets constipated and the hiccups return and we go round and round and round.  I finally call Marilyn G., MD, and tell her what's going on and how frustrated I am with all of it.  She gets Dave on the phone and "explains", AGAIN, what's going on and why he needs to be proactive and continual in addressing this issue.  It works for a couple of days and then he goes back to "hoping" he won't have this problem, and of course does, and so it goes.

After I left for Maryland, my dear friend Jann (who has since passed away, sniff, sniff), was out in California and was spending time with Dave and Hudson.  She went to one of the appointments with him (did I mention, I have THE most AMAZING friends!) and Dave tells some lowly office person that he has these violent and uncontrollable hiccups.  She gets on the computer and says, "Oh, no problem, we can prescribe Thorazine."



Thank god Jann was there!  She knew, as I knew, that Thorazine was introduced in the 1950's as the miracle anti-psychotic that was dubbed the "Chemical Lobotomy".  Geezus!  Jann, stepped up and said, "Dave, you absolutely cannot take that!"  The poor girl behind the counter was way too young to know this information.  She's just punching into the computer and its spitting out the "approved" solution.  Jann was calm, but direct with Dave.  Of course she called me right away and we were both AGHAST on the phone and I was soooooooo glad she was there at that moment!  As I mentioned earlier, I was finding out a lot of things, after the fact, and I have no doubt, Dave would have filled that prescription having no idea what it was originally known for.  It was helpful though in getting him to opt for the colace, sienna, warm prune juice, etc.

"Thorazine Shuffle" averted!
but the hiccups remain...

Eventually the hiccups would disappear, though issues with the constipation would continue and Dave's willingness to get ahead of it.  So I don't know really, what was causing them.  It could have been the Thalidomide.  But again, they did disappear while still on the Thalidomide, so who knows with certainty what the cause was.  We may have just gotten a better handle on the constipation and we were right all along...

Now do I really think had Dave taken thorazine he would have developed the "Thorazine Shuffle?"  Was I simply freaking out about something I knew about this particular drug that was not appropriate?  You know what? I don't care.  I don't care if someone thinks I'm overreacting or not.  It was a continuing EFFORT to educate Dave about health care, drugs, recovery, etc.  His world and, arguably, mine, had been turned upside down.  He had gone from no pills, to handfuls.  He was scared, in pain, frustrated, uneducated, inexperienced, etc.  I was 3,000 miles away and we had 27 years of marital baggage to plow through as we tried to deal with all of this.  

The upshot of this was, and continued throughout, I felt that Dave needed to be very careful about HOW he was communicating these things to the medicos.  If he tells them matter of factly so they know everything that's going on that's one thing.  But if when he's telling them he is giving signals that he wants them to "fix it", man, they will, more pills, more prescriptions, more, more, MORE!  As someone who has always worked for the simpler, alternative roots to things, this kind of approach is contrary to everything I think and believe.  Why would you not take sienna, fibercon, and prune juice (ok I hate prune juice!) to proactively resolve the constipation and thus, the hiccups... but instead, tell the docs, and get a prescription like THORAZINE to handle it.  I just can't think with that kind of rationale.  And here is the other thing, in case you are wondering... the other stuff DID WORK!  He just wouldn't stick with it.  I would find every pill out of his box taken EXCEPT the sienna, fibercon, colace, etc.  Then he would avoid answering my question about having a BM, and then whine about the hiccups, being constipated, etc.  SCREAM!  He's protesting, I get it.  I really, really do.  This is not fun.  But I have issues too, and his noncompliance is beating me up and pushing me into a very unsympathetic, sarcastic attitude.  (That marital baggage I was alluding too!)  Or... is this simply the lessons I am to work on...

(Note:  Some had expressed concerns about Dave taking stool softeners long term.  I was told that your body can become dependent on them.  I spoke to Dr. Marilyn G. about this and was told that is not the case with someone in a position like Dave where he has chemical reasons for the constipation.  If he was constipated, but otherwise healthy, and was taking laxatives and softeners, then yes, that could become a problem.  But when Dave got off the narcotics and the MM was better under control, he should be able to go back to normal on this... whew...)

There seemed to be a continuing struggle with the juxtaposition of the patient, the caregiver (aka, the wife), and the doctor!  I'm not a doctor or a nurse.  I struggle with Dave on my credibility and his willingness to take whatever is said by the docs/nurses as gospel.  If it supports my view, fine, if it doesn't, then he is less likely to work with me on it.  The docs/nurses, rightly stay focused on Dave, the patient.  Its extremely frustrating.  And yet, I can't lose my temper with him... he is very sick, its not OK for me to unleash my wifely wrath on him.  Calm discussion and persuasion is the order of the day, but it is exhausting in terms of the emotional energy it drains from me.  

I can't emphasize enough how incredibly valuable my friends have been through this process.  Jann was one of several.  I was able to fully disclose and unload my difficulties and find sanity in the storm - always with a solution, humor, direction, focus, and always renewed and resolved to keep moving forward and know, without any doubt, we would get through this.  The trick was, could we get through it in one piece, undamaged, stronger, better...
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  1. Well written, informative, helpful and inspiring. Dave's a lucky guy! - Ron Baker

  2. All that stuff about how Dave would listen to the "professionals" and ignore you is all too familiar. My partner is the same. He recently had a few side effects of one of the drugs (which is what I told him) and rather than tough it out he went to the hospital. They admitted him "just in case" and he ended up in a worse state than when he went in because his consultant was off and no-one else really understood his myeloma! OK rant over. Glad I'm not alone.

  3. I'm with you. My husband has MM, and some doctors want to overtreat. I tell him to drink more water for the constipation .... "Water?" he thinks. Then the nurses and doctors say, drink more water, and he finally starts to for a while. Good luck.