There is no honor in unnecessary pain

So sayeth Tara, the pain guru.  On that note, I wash down a Motrin 600 with some thick green juice and reread some of my friend Naomi’s posts about leptomeningeal carcinomatosis and arachnoiditis.  That’s right, the burning sensation across my upper abdomen may be due to nerve disturbances originating from my spine and/or my brain.  LC (or lepto…etc) occurs in 5 – 25% of lung and breast cancers, and it can happen quite suddenly.  When I mentioned it to my oncologist this morning (he’s been checking in every day by phone), he said he’d thought of it, and had already taken a second look at January’s brain MRI.  And perhaps he was thinking arachnoiditis and just not saying the word.  So a spine MRI is in horizon, or even “the always charming lumbar puncture” (as Naomi put it), known in vernacular as a spinal tap.  Fabulous.

Every other month I put on a dark look and talk about dying, but in reality, it would be a crushing blow to hear, “You have leptomeningeal carcinomatosis.”  Survival could be anywhere from 10 days to 1000 days with that.  I think Naomi lived about 1-1/2 years after receiving that news, getting whole brain radiation, lumbar punctures, intrathecal chemo, pleurodeses, and various chemo protocols along the way.  I was a helpless spectator, getting it but not really getting it.  I’m glad I never sent her flowers.  She hated flowers.

I recalled something she wrote, about how the sheet brushing the top of her foot caused excruciating pain, although in general both her legs were numb.  Both were caused by arachnoiditis as a side effect of leptomeningeal metastases.  Just to illustrate how ignorant I was of the whole situation, I didn’t realize that leptomeningeal involvement signaled disqualification from practically every Phase II clinical trial.  Why?  Because prognosis is terrible, there’s no treatment except to keep the person as comfortable as possible.  No one wants that on their trial data.

So, I need to face it.  I need to figure out how I’m going to deal with it, should that come along.  Most of what I read says it’s more a function of people living longer past a stage IV diagnosis.  In the old days, one died before having further complications of their disease.  Or if one was older.  So the younger folk who live longer wind up experiencing all this f—-d up disease has to offer.  Ah, well.  And if it’s arachnoiditis?  Well, that’s chronic pain and while manageable, it’s progressive.  Given a choice I’d rather have one over the other, but this is where the idea of having one’s spine radiated leaves me to say, See?  Radiation CAN “F” you up.

So do I haul off to a clinical trial now, while I so far have no leptomeningeal involvement?  That’s the next question and no doubt on my oncologist’s mind.  We seem to be on the same page, at least.


7 thoughts on “There is no honor in unnecessary pain

  1. I am definitely sending all the positive energy I can your way. If you have the opportunity and you suspect, you should jump at any one of the trials before the diagnosis. Any prospect of treatment that may be a breakthrough, well, that would be something we can all pray for. (((HUGS)))

  2. Geez…I’m thinking of you and hoping the news isn’t as dire as you think. it’s pretty amazing how much the role of imagination plays in those suffering from cancer. I, too, have lung cancer and every twinge I feel I attribute to some new huge tumor growing out of control. And despite what the late Naomi thought about flowers, go pick yourself a huge bouquet or treat yourself to some at a florist. And if you’re a member of Netflix, rent the series “Doc Martin’..a BBC series about a country doctor on the coast of Cornwall. And good luck! P.

  3. O Jazz..I really hope its not the thing you mention. I feel for you..I have the same anger. I think of you ! When do you know the results of the punction?

  4. Hi Honey. There is not much useful I can say except that I am still out here and thinking about you. I know Mom’s biggest fear was pain. Her doctor told her she could have as much pain med as she wanted. Toward the end she was on a lot of morphine, but it worked for her and she seemed pretty relaxed in her drug-induced state. She had a lot of hallucinations, but they seemed to be pretty pleasant – mostly birds and animals. Everything seemed kind of wondrous to her. {{hugs}}

    • Hi Nancy,
      Hope all is wonderful and well for you–new job going well, wedding all set, healing from the loss of your folks… Your Mom was such a trooper – it’s true, few things knock a person down quicker than pain. Thanks for the hugs and thoughts, for continuing to be out there. It means alot to me. {{Hugs}}

  5. Hi, Jazz:
    This very late entry, but thought you might want to know that the arachnoiditis that Naomi had was likely caused by the infusions of chemo into her spinal fluid for her leptomeningeal disease. So, if we had to do it over again, I would have asked the doctor to stop the treatments earlier. He continued after the fluid was clear in order to be safe, but again, hindsight being 20/20, I think he should have asked Naomi if her declining condition nerve-wise was worth it. Being the fighter she was, she would probably have said yes. Being her mother and seeing what she went through, I would’ve said no. Hopefully, you will never have to face that question!

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