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Monthly Archives: June 2015

Here’s where I wait

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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It’s not good

When your gynecological oncology surgeon calls you at noon on a Sunday. It just isn’t. And even when he’s being kind and asking you how you’re feeling and how’s that incision doing, you just know it isn’t.

At this moment, I know very  little, except that he tried to reassure me that the prognosis is good. Despite the word CANCER coming out of his mouth. He tried to speak calmly and kindly, telling me it was a surprise to him, too, based on my hysteroscopy results, but that treatment will likely only be surgery to remove my ovaries, because it’s hormone fed cancer. But he gave me so little information, and I was so unprepared for this call that I asked him almost nothing. Despite all the knowledge I have from my mother’s uterine cancer, I basically asked him what the stage was, but he seemed unwilling to give me too much information at that point. Low grade, early stage. Those are the words I wrote down, among a few others. Then he told me we would talk all about it at my appointment on Tuesday.

I’d been just sitting down to have lunch when he called. There was food on the table, not much on my plate yet. I wanted to throw up. Instead, I bawled. I put my head down on the kitchen table and I bawled. Hub tried to comfort me, to tell me we’d tackle whatever it was together. But all I could hear in my head was the conversation at my mother’s first appointments. “Caught it early” they told her. “We got it all in surgery” they told her. “Early stage” they told her. Later, they ended up telling her it was a higher stage and higher grade because it was an aggressive and fairly rare type of cancer. The initial conversations were before the pathology came in about the type of cancer after surgery (they’d gotten cancer results in the initial pathology from her hysteroscopy). I’ve already had my surgery, but it seemed like he was telling me he couldn’t stage my cancer until after my ovaries were removed. I asked about lymph nodes, but I honestly have no recollection of how he responded. I’m sure they’ll take lymph nodes for testing. I’m sure I’ll get more information tomorrow. I’m sure I’ll be overwhelmed. I suspect I will cry, though I might be able to hold that until I’m home and can cloister myself away.

I waited more than four hours to tell my parents. I pretty much cried on and off those four hours. I called my mother–I couldn’t tell her face to face–and I told her. It was a terrible terrible moment to say it out loud. To say it to the woman who has been living it for over a year. To say it to the woman who had ONE DAY left on her radiation treatments, with the hopes of not thinking about cancer until her next PET scan. To the woman whom I’ve been cheering for for over a year. To the woman who is strong and has handled every single bit of her journey with such strength and such acceptance…and with an ability to live with so much unknown.

I’ve told no one else in my family. What’s the point when I have no information? I don’t even know what kind of surgery he’ll want to do or how quickly. I know that my mother had an abdominal surgery because they wanted to look around and do a pelvic wash to check for any bad cells floating around. But I just have no clue. I have no clue whether he’ll talk chemo or radiation or potential for …I don’t even know what.

I emailed T to see if she could spare some time for me. She’s leaving on vacation for a week, but I wanted to get some words of wisdom from her. She generously called me from home and spent about a half an hour talking to me. I told her I didn’t really expect to hear some great miraculous words from her, but I felt it was the right thing to do…to seek support from her. Especially since she’s going to be gone during this difficult week. She’s supposed to be sending me someone else I can call while she’s gone, but I haven’t gotten that yet. I’m not sure I’d go talk to a stranger at this point, but T assures me that this person would be a good fit for me. And as expected, I spent the thirty minutes on the phone just telling her I didn’t know what to do or how to act. That I didn’t know what I wanted people to say to me or to do for me. That I have no idea what to do with myself.

I cried on and off the whole of yesterday. Last night I had a vicious headache from the crying. When we turned off the lights to go to sleep, I did go to sleep. I was up early and the thoughts started racing right away. I want to be strong, but right now I feel weak. I am so fucking scared of what is to come. I’m so fucking scared.

 

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Another detour

This trip has been exhausting and I haven’t really even left my house. Technically, I did the three hour tour, but otherwise I’ve spent most of my time housebound. Not to say I’ve been immobile because my anxiety over a blood clot has not allowed that. But walking around the first floor of my house (with Butthead following me around) is not exactly doing much of anything. I have otherwise read, watched television, or played Two Dots on Hub’s iPad.

I did make another detour. Sunday I was feeling pain in the back/side of my left calf. I was trying not to be too concerned about it, but not succeeding very well. By Sunday night, I was unable to sleep because of the fear of a blood clot. My legs have been bothering me a lot (walking around in my “house slippers” has probably not been the best idea), in all areas, mostly due to my chronic myofascial pain. But this pain I was having in my left calf felt different. It was a burning, stabbing feeling. I saw no redness, no swelling, found no heat on the skin, but I knew not all those things had to be present for it to be a blood clot. Monday morning, Hub was supposed to go to work but I made him stay home and in turn he made me call the surgeon’s office. I was considering the ER to have them ultrasound my leg, but Hub didn’t want to sit there for ten hours waiting to be seen if we didn’t have to.

So I called the doctor’s office and left a voice mail. One of the nurses called me back (they’ve all been very nice, despite me feeling like a whiny baby) and told me she’d write me a referral for a doppler sonogram of my leg and email it to me. I had to find a radiology center to go to on my own, since we’re in completely different counties. So I called the local imaging center nearby and the nice scheduling person got me in that afternoon. I went to the appointment and they took me only about ten minutes late. But the lady doing my doppler sonogram ultrasound thingy was not very nice. She seemed annoyed to be dealing with me and despite me attempting to be nice (as my heart pounded and my PVCs bumped in my chest), she had no interest in returning the favor. I’m not saying she was mean, but she certainly had no interest in being kind or compassionate. Hub reminds me later that it could have been anything–an argument with a coworker, a crappy boss, a sick child at home–but all I knew at the time was that it felt very uncomfortable and I worried whether she was really doing the ultrasound properly.

I asked politely if she could tell me anything and she said no, that they’d send the results over to my doctor’s office later that afternoon (it was 3pm by the time I left). I went home and tried not to cry, but trying to convince myself that if there was some huge blood clot, they’d be required to send me to the ER without delay. So I waited for my doctor’s office to call…and I waited…and I waited. And the office closed. And I spent the evening bound up in PVCs and fear, repeatedly looking at my calf and waiting for some sign of swelling or heat or redness.

Tuesday morning before I even got out of bed, I asked Hub for my laptop and I logged into my email to see if there was an email from the doctor’s office, but nothing. On a prayer, I signed into their healthcare portal and found the test results sitting there (they hadn’t been there the day before). There was a single sentence from the doctor’s office saying “tests came back normal”, but I opened the report anyone to read it carefully. Beyond it saying the report indicating they saw nothing abnormal, they did indicate the test was limited because of my “body habitus”. Meaning, I was too overweight for them to perform the test appropriately. I’ve have ultrasounds of my heart, of my stomach, of my pelvis and I’ve read EVERY SINGLE REPORT and never seen that phrase written before. Are my legs heavy? Yep, they are, and I am well aware of that issue. But what does that have to do with the work they’re performing? There’s no more fat on my legs than there is on my stomach, so I was kind of upset. And I know she pressed really hard on my legs with the ultrasound thingy, because later I was feeling the residual pain from that.

I’m really tired of being anxious about this shit. And I’m tired of the PVCs that are hanging around. My incision is getting slightly better, but there are ends of “fishing wire” sticking out, which I assume are the internal stitches poking through the skin. I’m able to get up and down for the most part, and I finally walked down all our steps today (thank goodness for our elevator) but haven’t walked UP them yet. My legs still hurt and that stabbing burning pain in my calf still comes and goes. On top of all that, my neck is killing me (I can’t turn my head to the right) and my back hurts and my arms are achy. I’m overcompensating for my abdomen with all my other muscles and they’re ALL complaining. I asked the nurse about going to see my massage therapist but she wanted me to wait until after my appointment next week with the surgeon.

Oh, and the headaches are hanging around, which is very frustrating. They feel like pressure headaches and I haven’t been able to get relief from them for a couple of days. That, too, makes me nervous.

Positive note, I did go with Mom to her radiation appointment today. Unfortunately, while she was in her treatment my stomach decided to be unhappy, but I managed and made it back home to rest. I had a little trouble getting into and out of their big SUV, but I didn’t injure anything, so I guess that’s good. Friday I go to see T, but I don’t think I’m ready to drive yet, so Hub is going to take me.

This has been so difficult. Even thinking I would have trouble after the surgery, I wasn’t really prepared to deal with all of this. I hope it ends up being worth it…not that I can go back anyway. I wish I knew when I’ll be able to get past these concerns over blood clots. And also, making myself go through this sort of “exposure therapy” was really rotten. I don’t like it at all.

 

 

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