I feel wretched, but I don’t think I’m on my deathbed… Yet

Having a bad pain day.  Had one following my follow up appointment last Wednesday as well.  It’s my left hip/iliac.  Wow, it’s killing-me, off-the-scale pain.  I can only think of my good friend Tara, who had a fused hip all her life  then an unsuccessful hip replacement when she finally got good health insurance.  She was a schoolteacher – not exactly a sedentary job – but eventually had to stop.  I could never imagine or appreciate the level of pain that hip caused her, and now I feel I can relate.  My pain is off the charts, and if that was the only location it might be a tad more tolerable, but it’s more like a secondary location that’s now eclipsing the other severe pains.  It needs to be radiated.

Needless to say, I’ve taken the meds I have and they’re no longer enough.  I need a talk with the oncology pharmacists – they need to solve this pain problem.  Even as the meds try to knock me out, the pain is uncontrolled.  I’m on the verge of asking if my acupuncturist would do house calls.  And I’m starting a book given to me last year by Naomi’s parents – Breakthrough Pain, by Shinzen Young.  It’s on using meditation to divide and conquer pain.

I’m fighting to stay lucid.  I wish I could drink coffee, but it tears up the tummy right now.  Some sort of distraction would probably be best, I just don’t know what.  TV has lost its novelty, and lack of alertness and concentration makes it difficult to read or do anything requiring attention to detail.  Maybe a foot massage/reflexology tx would wake me up.  I’m willing to try anything at this point.  Espresso beans, maybe?

As regards the clinical trial team:  they’ve contacted me this week and I’ve not felt well enough to break through my lack of rapport with Dr. Goldman to communicate.  But I must, and maybe should even return for an “evaluation”, but since he told the internal med doc to get with my local oncologist to set up “some standard chemo regimen”, I’m assuming his mind is made up that I’m not going forward with the trial.  And I’m fairly certain he’ll never cop to my condition being caused by the study drug. With Hubs out of town, the logistics of getting to UCLA are complicated.  I can still drive, of course, but if I’m having a pain day, I’d rather not be hopped up on painkillers driving to LA.

Enter logistics queen Tara, who rightly points out I don’t have enough portable oxygen for more than a 4 hour trip to LA.  So that’s out.  she comes over, we have guacamole and chips, I email Dr. Goldman. He says get back on Tarceva, come in soon, I’m glad you don’t feel too sick.  I’ll fill him in later.  Meanwhile I break out into hives all over.  Is it the aveda massage oil with wintergreen, which has methyl salicylate, an aspirin-like compound? I’m supposed to be allergic to aspirin, but I’ve used the oil before, albeit on small areas.  My mom gave me a massage with it 2 nights in a row.  How likely could it be the store- bought eggplant Parmesan or chicken piccata? ( Not likely?)

all night I go from Benadryl-induced sleep to pain induced wakefulness back to Benadryl induced inability to meet scheduling obligation to get X-ray for pulmonology appointment.  I was trying to change that appointment to Friday, actually, when I go in for monthly Zometa tx (bone meds).  Im losing grip of my organizational skills.  Anyway, its a no go, I think have to go to a clinic 3 days in a row for something.  PITA.

So today was something of a lost day, spent texting and keeping symptoms at bay.  Hubs looks like he might be caught in another east coast weather system.  We are supposed to take delivery of a new bed on Thursday (goodbye fancy formal dining room), and were invited to a superbowl party on Sunday (prolly won’t make it but never know).  My mom has been here the past week and a half and is getting her groove back caregiving-wise… Poor thing.  I feel bad for her but I kind of think it’s good for her mentally.  She was starting to slip and I can’t help but think this unfortunate exercise is sharpening her mind.  I know trying to recover is doing something to mine… Not sure what, but thank heavens for intelligent friends who keep at me.  if I could just get the heart rate under control.

In a strange twist of fate, I came across an op-ed written by the neurosurgeon resident husband of my prior primary physician in Oakland.  I chose her for her outstanding credentials (dartmouth, Yale, UCSF resident of the year), but only saw her twice Before I moved and she quit to do a post-doc fellowship at Stanford, where her huBby was doing his neurosurgeon residency.  They are 36 now, and he has stage 4 lung cancer.  He’s probably an ALKie, but I’m not sure.  It just points to how one can be the most blessed person and be struck and leveled by this hateful disease, while the world’s criminals go about in perfect health, destroying the world, procreating, spreading more ugliness and pain.  Dr. Kalanithi might have the chance to see a breakthrough in his lifetime, and I hoped I would, but that may no longer be a realistic wish for me.  But you never know.

i hope tomorrow is a better day.  Sorry about the typos – I wrote this on an iPad. Will fix later.


7 thoughts on “I feel wretched, but I don’t think I’m on my deathbed… Yet

  1. Ah Jazz, this is so hard to read. Your pain comes through with every word. I just wish there was something useful I could do or say. All I can do is think and care for you. If only it could help…….


    • Dear, sweet Gail,
      It’s 2:30 am and my eyeballs itch from whatever is causing these hives. As I wait for Benadryl to suppress the burn, I hold you close to my heart, across the Pacific to your land of summer. I think of you constantly, wonder how you are tolerating WBR, who is driving you to appointments, how you are coping with the fear and enormous changes. I’m also still hopeful that Ben will put you on CO-1686 when WBR is done and you’ll be back to music festivals and river cruising in no time. I don’t have a Ben, so my fear has no lab coat to cling to, unfortunately.
      I will vow this, though: if I get a second chance by dint of finally getting on a tx that turns me around and I’m well enough to travel, I will try my darnedest to get to Oz and meet you, and see a bit of your lovely continent. Nice goal eh? Or at least go on a river cruise so we can compare notes:). You continue to be my hero.
      Sending you strength, hugs, shaman magic, love and healing from the collective consciousness,
      Jazz ❤

  2. God Bless you Jas, and may He wrap his loving arms around you. I will miss you terribly but I know that you are now free of pain. I love you my dear cousin, and will keep you close to my heart always.

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