33 Comments

When a test result is not – Mum update

All stains were done on the tumor tissue that could be done and all tested negative. Good news? Nope. The tissue was obvious that is was not of the brain, therefore it came from somewhere. Because of the nature of brain tumors the tissue doesn’t freeze well and sometimes you cannot get a good result. That is what happened in this case. They know it came from somewhere, they do not know which organ. Yippee.

Since they know it came from somewhere, they know the only route to the brain for a lovely cancer like this is the bloodstream. If it came once it can come again. Therefore the first step is radiation of the whole brain. It will start after the staples come out which is around 14 days after surgery. We are 5 days post-op now. Fifteen to 18 treatments on consecutive days (weekends off). Each treatment to last 1-2 minutes. Redness at the site of treatment, fatigue especially in the morning, occasionally peeling at the site. Total loss of hair, which will grow back in 2-3 months and may grow back thinner than it is now. My mother presurgey had a very generous head of hair so some thinning would not devestate her. The totally bald does.

After that will be chemo or radiation if they can find the sneaky-ass hiding cancer, general chemo if it hides better than a scared little boy at Neverland Ranch. No clue how much or how long. She will not do it for long, this I know. Here’s hoping it is a short treatment. We’ll deal with that when we ge to it, though.

We talked her into staying in hospital for rehab. The PA explained and stressed the danger of falling. It is isn’t a “Gee, we think you’re teetering all the time, it’s a if you fall and hit your head after surgery it could be a devestating event.” And he told her that outpatient treatment which starts later and is not as intense gives her a lesser chance of recovering her memory and the lapses in cognitive thinking skills she’s had since the surgery. That got her halfway there. Exasperated I asked her what she would tell me to do if the situation were reversed. She tried to shrug and said, “I don’t know” and couldn’t even get through that with a straight face. I said, “The hell you don’t know what you’d say.” Then we all laughed and she agreed the intense therapy was better in the long run.

PT, OT, and speech. Morning and afternoon sessions. The nurse told her she’d be buff when she left and almost left right then. lol

She’ll still come stay with me after the rehab. She’ll need help and rides to radiation and later chemo. We’re focusing on the rehab right now though. Five days post-op means we’ve hit the peak of the swelling caused by the surgery and improvements should start tomorrow in memory, balance and cognitive skills. Rehab will enhance and maximize that. Rehab first. We’ll take the next step when we get there.

Today was my breakdown. I finally cried. It finally hit me that my mother may actually die even if we do everything they want fully and completely. That maybe the assault of brain surgery was for nothing. This thought had escaped me until today. I was toddling along like everything of course would be okay because we were vigilant and found it early, sought treatment immediately, she sailed through her surgery – and the possibility of death snatching her in spite of all that effort just eluded me. Until today. I’m counting on that not being true. I’m believing that she will get 5 good years from this. Really, that is all she’s asking for. They’ve not said anything about chances or prognosis and she is not asking. So forward we move, hopeful, brave and scared all at once.

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33 comments on “When a test result is not – Mum update

  1. Oh Pamela.
    I pray she gets 5 good years too.
    Maybe even more

    (((Pamela)))

    • Thanks, Mattie. It just continues to be surreal. Hard to believe only 2 weeks since we went through the ER to see what the problem was.

      I read your Mr. Stump just now. It made me smile. I’m so happy you have a Mr. Stump next door. 🙂

      • Like I said, everyone should have one. Quiet, strong, hard-working, kind men who do what needs doing.

        Now that it is Spring and I’m out there, I really miss him. He used to come out and watch me work, and we’d jabber about life in general. He loved my peonies and hostas, said the yard looked like a park.

      • {{{{{Mattie}}}}} I always picture your yard as amazingly in bloom with you puttering around talking to everything, gently stroking leaves, petals and bark. It is is such a comforting picture for me. 🙂

      • Rather accurate, actually. Though you’ll find me humming some wordless tune most of the time, my hair a dishevelled, frizzy, fly-away tangle scraped back into a ponytail, smudges of dirt on my face from pushing the strays back behind my ears as I tool along through the garden, gloves sticking out of a pocket, clippers in another, a cup of coffee frequently in hand.

        And in a bit here, I’ll be pulling on my clothes and heading out there for the day. So much to get done, you know. I have to go see how my babies are doing. The hosta babies, that is. And water the little baby birch tree lightly, to encourage it to grow and become a glorious tree.

        I think I’ll plant the opuntia cactus I have out on the back bank. They’re sturdy and tough, yet they have such a beautiful flower. They’ll be my memorial to Mr. Stump. Sturdy, tough, with a beautiful soul.

      • ~smile~

        It snowed here last night. Bastard April! Spring will be here soon, too, I hope.

  2. ::HUGS YOU MUCHLY!!::

    She is a tough cookie and so are you (the nut doesn’t fall far from the tree, ‘eh?)

    Crying is good – it is like a pressure valve for releasing tension, so I’m glad to hear you finally did. 🙂 AND “brave” and “scared” are both good.

    Your mom seems like a feisty one and still has a zest for life – that is half the battle. Glad to hear that she is opting for a bit more agressive treatment (typically I scoff at it unless it makes sense.) and in this case it does. If those little bastards are hiding, flush ’em out. Hey, I still have a mousetrap and some peanut butter…oh, wrong little bastards, never mind.

    ::HUGS YOU AGAIN!::
    ::HUGS YOUR MOM!::
    ::HUGS THE UNIVERSE for seeing you through this.::
    ::HUGS “Brave”::
    ::HUGS “Scared”::

    I’m heading out for the weekend again but I should be home Thursday night if you want to talk.

    • Thank you, sweetie. Yes, she is fiesty. I think she’ll go for the radiation. She seems like she will and to me that is finishing what you started. Chemo … is up in the air. I believe she will at least give it a try. She may not stick with it if she gets too sick. That is not a choice I can make for here.

      Thank you for the hugs. We need them.

  3. A good cry is good for the soul – gets all of that self-doubting crap out of the system.

    One step at a time.

    (((PJ)))

    • The good cry gunked my contact lenses and they were a new pair. Bastard tears! But yes, sometimes it is needed.

      • Sounds like you’re not drinking enough water, Boogerhead.

      • Ok, that part is true. It’s been coffee to the max or I’d be even more zombie-like.

        It is also true that when you are stressed a particular hormone output increases and one of the ways the body releases that chemical is through your tears. Bigger the stress the greater the amount of the hormone. I’ve had it happen before. Regular crying (reading sad stories or watching sad movies will do it) doesn’t muck up the contacts, major crying during big stress kills my contacts.

        I do need more water if for no other reason than to avoid being called a boogerhead.

  4. {{{{PJ}}}}

    Maybe it’s time to do a “seek and destroy” spell? Cancer is hard to work magic on….you need to kill it while not harming the immune system that’s fighting it off.

    A good cry is also cleansing. We’re all here for you.

  5. ((PJ)) Your Mom sounds like a feisty woman, I like her spirit.
    Cry is good and cleansing for the whole being. I hear you about the contacts though! Ahhh what is a new pair of contacts compared to a Mom!
    ((HUGS)) all the way around.

  6. {{{PJ}}} {{{PJ’s Mom}}} I’m glad that she’s agreed to the rehab in the best possible place. And I’m glad you cried, release of emotions is a good thing.

    Prayers are winging there way out to anyone who will listen to me at this point.

  7. Well, that’s not the news we were hoping for, damnit. ::hands you Kleenex:: I’m glad you got that cry out of your system, contacts be damned. {{{{{{}}}}}}

    • Thanks {{{{firefly}}}}

      We weren’t even told that no answer was a possibility. It just seems very weird to have a secondary tumour with a primary too small to show on scans. I understand faster growing in the brain, but still …

      I have some doctors to question in the next few days. Maybe we’ll get some explanations.

  8. I’m sorry. Good thoughts for you both.

  9. Well, if there’s going to be hair loss, she’s going to want some caps, won’t she? What’s her favorite color? I’ll get a-knitting.

    • She likes blue – maybe a light medium blue? It is hard to say as she has ruddy skin, but pastel would make her feel like an infant, but too bright would make her self conscious. Hey! Her hair is black and gray – kind of a steely gray, but whiter than that. Is there a yarn that looks whitish gray – not too white, but not a solid gray tone?

      Thank you so much!

  10. *Hugs*

    More candles lit and an offering left- will go pick up something in a retty shade of blue and altar it too.

    Tears are needed sometimes. They help just remember to let em out. Keeping them in makes things ickier.

    All the best. Take care!

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