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I haven’t posted

23 Mar

mostly because I wasn’t sure I was ready to really share. Sometimes I need time to process before I know what to say. Often when I’m in session with T, she’ll say things and I’ll just sit there for a minute before I say, “Oh-kay” even. And then I’ll need to take home what she’s said and really process it.

I’ve been processing the hell out of some stuff.

We went to see my mother’s new radiation oncologist, who was not upbeat about the situation. He, in fact, was very gloom and doom about my mother’s prognosis. She hadn’t had her PET scan yet, but he seemed to indicate that they weren’t likely to be able to “cure” my mother. We spoke with him for about 45 minutes, maybe an hour, and he tried to explain what was going on. The phrase that still eats at me is, “Chance of cure is not high.” It took me a while to think on the fact that just because she can’t be “cured” doesn’t mean she can’t live WITH the cancer. But at that point, we still had no results of the PET scan, so we had no decisions to make. She has since had her PET scan, but the radiation oncologist did not call her to talk to her about his suggested path as he was supposed to. She ended up calling his office three days after the test, talked to the receptionist and left a message (the receptionist said, “oh, it’s always good that the patient calls to remind the doctor he was supposed to call” and she was SERIOUS not snarky!) but didn’t get a call back. So she called her chemo oncologist and left a voice mail and HE called back right away. He said he was going to call the other doctor first thing this morning to talk to him. Then he sent her the written report. But reading those damn things is…hard. So we still have no set path, and at this point Mom has decided she wants a second opinion, no matter what.

The appointment was hard. The doctor put his hand on my shoulder as we were walking out of his office and said, “I’m sorry to give you such bad news.” It made my heart skip a beat. It’s like you aren’t sure what is exactly being said, but when a doctor says that to you point blank, you really get it. On the way home in the car, we were only mildly discussing the appointment, but also trying to talk about other things. I knew my mother was upset–this whole episode has been much worse than the original diagnosis, the hysterectomy, the chemo–so I was trying to do something to help her. I finally wrote on my notepad (I always take notes for her during appointments), “Today you are okay.” I ripped the page off and handed it to her, and I told her to just keep it in her pocket. Every time I see her she shows me that she has it with her. The truth is, today she IS okay. The recurring spots are small and localized (at least from the CAT scan that found them), and she’s not having symptoms. (The unfortunate part is that they are concerned it has made its way into her lymph system…and also that it recurred so quickly after chemo ended.) So my brother and my uncles (her brothers) are all researching and inundating her with information, but I’ve been staying out of it. I’ve been doing what I can do, which is talking about other things with her. Doing other things. Planning other things. When she brings something up about the cancer or the research, I talk with her. But otherwise, I don’t bring it up. She has enough of that from everyone else.

The same day my mom was getting her PET scan, I was in with the gyno CRNP talking about MY fantastic upcoming procedure. Apparently the next step for me is something called a hysteroscopy. Where they put you in stirrups and shove a camera and a tube past your cervix into your uterus–which they fill up like a water balloon with some liquid–and poke around. They also take “material” for biopsy to see what’s going on. This is done in their women’s procedure center, attached to their office, which fortunately is attached to a hospital. So I get to be awake, but I’ll be having all kinds of medication. Now I’ve had a biopsy before, but no camera. This is supposed to take a little longer and likely be more uncomfortable than just a biopsy because the camera is larger and there’s more that needs to be done. In preparation for this fantastic voyage, I get to start my week by taking 800mg ibuprofen today, 2x a day, for two days. That’s today, by the way, and I’m home alone. So I have no Hub to be my safety person as I take my pills. I know it sounds weird because we’re talking about ibuprofen, but I haven’t taken ibuprofen in 15 years. I take nothing, other than the occasional antibiotics and only recently that stupid progesterone. I don’t even take tylenol or aspirin. So I get to take that ibuprofen with lunch, then again with dinner. Then 2x tomorrow, as well. AND I get to take something weird tomorrow night to “soften” my cervix in preparation for the camera. And then morning of the procedure, I get more ibuprofen AND a beta-blocker (which the doctor says is FINE with my PVCs) in preparation for counter-acting the epinephrine I’ll be getting directly into my cervix during the procedure (which causes people to be “jittery” and anxious!). I’m so unhappy about all these medications, I can’t even explain. I’ve been blocking this whole thing out until this morning so I wouldn’t have to think about it. I asked if they were going to be monitoring me, and the CNRP said they’d do my blood pressure ahead of the procedure, but during they basically just visually monitor me…and depend on ME to tell them if something is wrong. I wanted to laugh and cry, because those of you who are anxiety sufferers KNOW that we don’t interpret things–like pain, breathing, heart rate–properly when we’re anxious. Now the doctor DID prescribe me a couple of ativan pills in case I needed (or wanted) to take it the night before or morning of the procedure. I’ve had ativan ONCE in the hospital ER when they were putting me into the MRI. I don’t remember much about it, but I’m worried if I take the ativan (0.5mg) the morning of, I won’t be alert enough to tell them if something is wrong. I’m open to opinions on that from those of you who have experience with ativan.

I’m also concerned about being in that kind of horrible position for an extended period of time, due to my muscle issues. The CRNP keeps telling me that recovery shouldn’t be bad–lots of women go back to work the next day, some even go “shopping” the same day she told me–but I have muscle pain after going to an annual exam because of having to keep my legs open without any kind of support. So the CRNP offered me “candy cane” stirrups, which I found out later will sort of hang my feet in the air rather than me putting them into stirrups and having to keep them balanced. No idea if the candy cane stirrups will be better.

On top of all of that, I am trying to ignore the potential result of the biopsies they might get. This part has been really really hard, because it scares me the most.

I’m feeling overwhelmed between what’s happening with me and what’s happening with my mom. The potential scheduling of my procedure caused me so much stress because I KNOW it’s going to take me a couple of days to recover, and I was worried that my mother was going to have an appointment during the time I was unable to get around to go with her. I tried to work things out, but we had no idea what timing was going to be with her scan and her results and etc. As it turns out, because she’s considering a second opinion, I should be okay by then to go with her. And if not, my uncle (her brother) has really stepped in to attend appointments…he has some medical background, so he understands things differently than we do.

So just the length alone of this post should indicate my mental state, eh? If you’ve read all of it, thank you. If not, no worries. I just needed to be able to vent AND put this all done for posterity.

(and for record’s sake, my PVCs have been milder and less often in the past two or three days. I have no idea why.)

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6 responses to “I haven’t posted

  1. April

    March 23, 2015 at 2:37 pm

    I like the idea of that note you wrote for your mom. I wish I had such wise words for you. I’m wondering if the sedation for a hysteroscopy is the same as for a colonoscopy. I guess you’re awake and can respond, but you don’t remember a thing. I hope so. I know how it feels to be in your anxious shoes.

     
    • meANXIETYme

      March 23, 2015 at 2:58 pm

      I hope the note helps her, even a little. At the moment, I know she’s struggling with what path is the right path.

      I’m actually not going to be sedated at all for the hysteroscopy. I’m going to be fully awake, but they’re going to use the anesthetic on the cervix directly. And the 800mg of ibuprofen is supposed to help me with the rest of the discomfort. For a colonoscopy, at least with my brother’s a few weeks ago, he was sedated completely, I think.

      Thanks for responding. I’m not doing well right now. I couldn’t force myself to take the 800mg of ibuprofen while alone. I hope not taking it 2x today (with the procedure on Wednesday) won’t be a ginormous deal. I’ll be able to take it 2x tomorrow, I’m sure, once I get over the hump of the first one tonight when Hub is home.

       
  2. joeyfullystated

    March 23, 2015 at 3:01 pm

    OMG. Well, after two biopsies and a LEEP, I can’t fathom this water balloon procedure being worse! Good grief. If I have to get any of that done again, I will request they take the parts, as I do not need them. In fact, I said this to my obgyn in Savannah, and he said that was fine, so if a doctor here didn’t agree, I think I’d call him and fly in!
    I have four kids, I’m not planning any more, and I do not understand why doctor’s strive to keep a useless uterus/cervix! Yes, I value my health, but it’s been a good 10+ years since I valued my fertility!
    I don’t understand WHY they don’t numb for a cervical biopsy and seriously, no one with anxiety should have to endure that numbing epi crap. My legs shook like mad the entire time, and I thought my heart would leap from my chest AND THEN THEY TOLD ME it was epi. Omaword, I did labor and delivery breathing through my entire LEEP, holding The Mister’s hand — It was worse than they said, and recovery was much worse than they indicated. Is it any wonder I’m never happy to get a smear?
    I say all this so you get that I get you.
    In terms of Ativan: If you haven’t taken it, you should probably try it. People react differently. My experience was that half was good for a crowded, loud place, or help falling to sleep, but a whole milligram was better for the dentist or the gyno, or waiting for my child to come out of recovery. I suggest the entire mil.
    I can take IB, but not for too long, or I get all that NSAID sickness, hives, tingling…ugh. I’m sure the IB will be fine. After my biopsies they gave me Celebrex, and I would have preferred the 800IB.
    Honestly, I’m so sorry you’re going through this while your mother goes through that.
    I’d wondered why you hadn’t been posting, and now I see. I’m so sorry for all the trauma. Wishing you the best of luck, and keeping you in my thoughts.
    ❤ What time is your procedure?

     
    • meANXIETYme

      March 23, 2015 at 3:20 pm

      I actually asked if we had to do this procedure if I was heading toward getting a hysterectomy and she said YES because they need to make sure there’s no cancer. If there’s cancer, they have to handle the hysterectomy differently.

      They told me the epi was going to cause jitteryness, which I know from getting novacaine at the dentist (she said this is the same stuff!). That’s why they have started giving the beta-blocker thingy because it slows the heart rate and lowers the blood pressure and counter-acts the feeling of the epi. Fingers so crossed that is the case, because ye-ah… (I actually had a small cavity filled without novacaine so I didn’t have to deal with the epi–later they started using the novacaine stuff without the epi, which the CRNP said they can’t get anymore!)

      And I don’t get to have anyone in the room with me. I asked. Only the doctor and the nurse, tho the CRNP said the nurse is a very calming person. We’ll just see about that, y’know? I still feel iffy about that ativan. It’s another thing for me to worry about taking, especially since I have limited experience with it.

      As for IB, I haven’t take it in so long and I didn’t realize until I sat down to take it at lunch that it’s 800mg and the equivalent of taking FOUR advil at one time. I stopped taking IB because of stomach issues with it. I’m just hoping that 2 days of it won’t screw me up too much, especially since it’s such a high dosage. I used to use Celebrex but it was right after that that I started with the PVCs and I read much later that Celebrex can cause PVCs or heart palps.

      My appointment is 11:30 on Wednesday. If they take me on time, and not once in the 3 appointments I’ve had there have they been on time. I only hope they are more meticulous with the procedures because if I have to sit in that waiting room for 30 minutes to go into the procedure, I may go berzerkers.

      Thanks for your thoughts on your experience. I’m just trying to maintain my sanity right now. Tomorrow night is going to be even worse because I doubt I’ll be able to sleep at all. Ugh.

       
      • joeyfullystated

        March 23, 2015 at 4:27 pm

        Oh. Okay. I had a student nurse (stranger) hold my hand and talk to me while they put me back together after Sassy and she was great. The Mister went with the neonatal nurse to give the baby the bath. I hope your nurse person is calming — that can make all the difference.
        Gosh, the waiting room is where I take the Ativan, lol!
        I say that, but I haven’t taken any in months.
        I will light a candle for you at 11:30 on Wednesday and keep you in my thoughts. Maybe it will be better than expected. And with good results of course!

         
      • meANXIETYme

        March 23, 2015 at 4:41 pm

        Thanks, I take any and all good wishes and healing thoughts. I hope the nurse is nice and I hope the whole thing passes more quickly than expected. That would be nice.
        What happens after will have to be dealt with after. But thank you for the good wishes on the results, too!

         

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