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.


Death and taxes

Or rather, taxes on Social Security benefits and excruciating upper abdominal pains.  Will mysteries never cease?

While palpating my organs and ordering labs, my oncologist took the opportunity to tell me that I shouldn’t get excited over clinical trial drugs because they’re unproven, that he thought the thoracic team at a certain teaching university sucked, and that I shouldn’t believe everything I read on the internet.  I jovially agreed, thinking later that I should’ve mentioned I read research papers, scientific journals, and abstracts, not just anecdotal evidence.  But whatever, I assured him he was the doctor and his opinion was totally respected (which it is, but that doesn’t mean I won’t challenge it).

I hope whatever this is proves to be some minor inflammation that will resolve with pain medication and less activity.  I have a bad habit of overexerting.  One of my cats was quite ill earlier this week.  He ran a very high fever and now he’s on antibiotics.  Maybe I caught his bug?

Sigh.  I could really use a gentle month.  And some macarons 😉

A peculiar Birthday

It’s a most peculiar birthday.  The Hubby’s out of town, though he sent gorgeous flowers and planted a lime tree and heirloom tomatoes before he left (among other surprises around the house).  Sister /BIL had dinner plans but managed to join me for an afternoon in Tilden Park which I’d planned to enjoy alone.  My buddy Julie was scattering her Mom, Palma’s ashes over the Pacific, from a boat leaving out of San Pedro harbor.  All 18 family members were in attendance.  I had some early celebrating last week in SoCal.  My brother was hospitalized for pneumonia again – the third time in five months.   A complex and worrisome situation.  He’s to come up soon for some social contact and recovery.

Naomi (sister in lung cancer from the old Vox days) was with me in spirit today, although she passed away last December.  Earlier this week her Mom, Judy, sent me some clothing she thought I might enjoy.  The packages contained post-it notes describing the significance of the clothing, whether it was a favorite,  something which gave her comfort during chemo, things she enjoyed (knitting, funny monsters), finery for fancier occasions.  My heart broke all over again.  I was overwhelmed by the kindness of this gesture.  I wore something of hers today, hoped she joined me for awhile in celebrating my fifth birthday since diagnosis – a luxury she didn’t have.

I’ll have to add pictures later, and make up for the lack of posting about the dark month of March.   There’s much to tell, but this is all for now.