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Here’s where I wait

17 Jun

I had my doctor’s appointment with the gyn/onc surgeon. My parents came with us to try to help me listen, but in the end there wasn’t much new to learn at that point. He had no further information on the cancer, because he didn’t have enough information from surgery as cancer was not the expected outcome. Mostly what the doctor wanted to talk about were options for next steps. They were:
Do nothing…wait and watch — not really much of an option for me. There’s cancer, it has to be addressed somehow.
Go for treatment…radiation and chemo — with the hopes that whatever is in there would be killed by the treatments. But the exact treatment would be a guess, since we really have no idea what’s left inside me.
Go back into surgery…take out ovaries and tubes, sample lymph nodes, do a pelvic wash — only this option allows him to stage the cancer and plan an appropriate treatment.

Without hesitation, I took the surgical option (DaVinci robot assisted laprascopic). As much as I don’t want to go back into surgery and/or deal with (bowel prep again!) recovery, I also don’t relish the idea of going through treatments that might not really target whatever is going on. Fumbling around blindly does not sound smart to me. So surgery it is going to be…but they won’t do surgery for six weeks after the last surgery. And on top of that, when I went to schedule it, they wanted to wait until AFTER six weeks. Which meant from the time I went into the appointment until the new surgery date, it’s over four weeks.

Four weeks to sit and wait…and do absolutely nothing. Well, now it’s three, so I guess that’s a step in the right direction.

The cancer is grade 2. I asked for and got a CT scan on Friday that showed “no evidence of metastatic disease” so that’s also good news. Bad news was that because they didn’t expect to find cancer, they cut up the uterus inside me (in a bag to keep any potentially errant cells contained) so identifying how far the cancer might have gotten into the uterine wall was difficult for the pathologist. The report says “superficial” advance into the wall, but then goes on to state specifically that it was hard to determine because the uterus had been cut up. I don’t know how they will properly stage the cancer if they don’t have that information, and I forgot to ask.

As I said in my previous post, I don’t really know how to trust the things being said at this point. I heard all those nicey nicey things during my mother’s early appointments, but once she got her surgery and the cancer was staged, it was much more advanced (and more aggressive) than they had first anticipated. So I don’t want to get my hopes up, and that leaves me in a low spot…worrying.

The first couple of days I cried myself to sleep. Hell, the first week I spent crying on and off, and crying myself to sleep. There are things going on around here that I want to be present for, but the cancer and the surgeries are messing stuff up. My niece is getting married in the fall, and her bridal shower is in July. Unfortunately, with the next surgery scheduled, I’m already having to decline the invitation to the shower because it will be just over a week after my surgery. Based on my first recovery, there is no way I’d be able to handle that, physically or mentally. And as my mother pointed out, I might not be able to make it to the wedding in the fall (out of state and a looooong trip) if I’ll be needing treatment. I don’t think she was thinking when she said it, but she kind of blurted it out and that sent me into a spiral of crying again.

I just want to know what I’m facing. And in the meantime, I don’t know how to be normal and do normal stuff. I just feel afraid and lost and helpless. I’m still spending time doing much of nothing…staring out the window, staring at the television. I read a book the other day, but no crocheting. I just sit and zone out…and try not to wonder and try not to what if…

I’m still not sleeping well, so I’m tired all the time. I’m having terrible nightmares when I do sleep. My body hurts so much…my legs, my back, my neck, my arms. Every part of me is so tired and so achy and so painful, tense, sore. It’s a struggle to move around, it’s a struggle to do much.

 

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6 responses to “Here’s where I wait

  1. April

    June 17, 2015 at 12:28 pm

    I can relate to what you’re feeling. I hope you find the answers soon and that you can find some peace while waiting.

     
  2. joeyfullystated

    June 17, 2015 at 1:31 pm

    I really wish you had all the answers, and all the information, so that you could feel more confident about your treatment. A month is a long time, I know, because a day is long.
    I am still thinking of you and wishing you well.

     
    • meANXIETYme

      June 17, 2015 at 2:01 pm

      Yeah, the days seem to stretch out longer every time I look. 😦
      Thanks, Joey. Eventually I will get the answers I need and be able to plot the next steps. Until then…

       
      • joeyfullystated

        June 17, 2015 at 2:03 pm

        Cue the waiting.

        I’m feeling worse anxiety now, having put off my annual til after vacation. :/ I thought putting it off was smart. Until this. Now I wonder if I should go before. When is it ever a good time?

         
      • meANXIETYme

        June 17, 2015 at 3:23 pm

        It’s never a good time to go, and putting it off isn’t a great decision either. I wish I had gotten the hysterectomy 2 years ago when the first gyno suggested it, but I wasn’t ready mentally. But maybe if I had, it would have been before the cancer. Then again, the cancer could have been there at that point and I wouldn’t have been able to handle ANY of this as well as I am (even if I’m not handling it extremely well, at least I’m handling it).
        So ye-ah, no good answers on going or waiting.
        I’m sorry about the increase in anxiety. At this stage, I’m kind of feeling it’s better to get things over with because waiting and wondering and worrying is worse than the moments of discomfort during. Those moments seem to pass faster than the waiting.
        Honestly, I have no idea what I just wrote. It all seems discombobulated. But know that I am sending good energy your way to chase off that anxiety. *HUGS*

         

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