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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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Don’t pity me

I’m doing that just fine all on my own. Bleh.

Seriously, this is the first day I’ve been able to concentrate even a little bit. Prior, I was feeling very foggy and dizzy, and like my eyes wouldn’t focus. It was pretty horrible. Thursday I was trying to be a good girl and eat protein, so we had some deli turkey in the house in preparation. Turns out there’s something on there in the gluten range (maybe the seasoning? we don’t think we’ve bought this meat before, it was fresh-made at the store) that was affecting me and I spent most of Thursday suffering from hot-face, which made me miserable. It wasn’t until after I’d had some for dinner that I realized it was probably the turkey and I had to just wait it out. I didn’t start feeling that going away until sometime Friday mid-morning. Meanwhile, my sleep has been close to nil. That has been kind of horrible because it aggravates anxiety big-time, as all us anxiety sufferers know. My PVCs remain annoying…

I’m in some mild pain, but taking ibuprofen twice a day, just to help speed healing, I hope. Friday the doctor’s office called to check on me and the nurses warned me to be very aware of blood clot symptoms, especially with the weekend coming. She told me to not wait and go to the ER if I felt I had symptoms. So now I’m spending the majority of my time worrying about a blood clot. Fan-fucking-tastic. And apparently this is an issue for MONTHS after a surgery. So my leg is bothering me and it’s kind of freaking me out, but I am trying to remind myself that it’s probably a muscle ache and maybe must my knee hurting (which is normal for me). I’m afraid…there’s so much going on in my body, I have no idea how to identify what is normal and what is not. My heartburn is pretty bad (with accompany nausea!…yay), even though I’ve gone back on my regular digestive enzymes and probiotics…they haven’t really taken over yet. So that means I’ve got pain in my chest which radiates to my arms and back. And I have to decipher that as being different from being short of breath and in pain which could be a clot my lung (versus in the leg, of course). This has not been a good experience for me…I’m sure T is thinking “Ooooh, exposure therapy” but I’m thinking OMG how am I going to get through this?

I feel very split up about all this…trying to realize I had major surgery and still feeling like I’m supposed to be active to help heal. They’re all telling me to listen to my body, but my body LIES to me. So how am I supposed to know how much to rest and how much to do? I had major surgery and yet they sent me home five hours after. Which is it? Major surgery and rest, or get up and move? I’m FINALLY able to stand up and sit down without groaning from the pain and stretch, but it’s still uncomfortable.

Eating is difficult because of the nausea and the heartburn. I have no appetite, but I know without food I won’t gain stamina or energy. I’m trying to drink but I’m NEVER a good drinker so I’m sucking with that, too. Which apparently could lead to more potential blood clot issues. So much fear in my body at the moment. I told T when I had my phone appointment on Friday (which I could only talk for half an hour, I was so out of it) that I feel like I’m in the midst of anxiety even though I didn’t feel ANXIOUS. She said it’s my body responding to the trauma of the surgery…and to just try to use my tools even though it’s not really “anxiety”.

My head feels full and pressured. I have a headache (while I’m taking 800mg of ibuprofen…wtf is up with that?) and I’m so tired all the time. I want to be past all this NOW.

On top of all that, Hub has a really bad cold that came on Tuesday night. I’m SO lucky that I haven’t gotten sick yet, even though he’s feeding me and getting me drinks. It’s really really sucky, though, because he’s not touching me. No hugging, no kisses, no rubbing my back or my hands or my arms. No comfort. It’s a really big loss for me… I want so much to be soothed and because we’re trying to keep me from getting the cold, I feel bereft and alone.

Like I said, I’m doing a find job of pitying myself. And now the eye floaters are back, so I’m done here.

 

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Post op

I’m here, home, and have survived relatively in-tact. With the exception of the uterus and fibroids, of course.

Sore throat, there’s a sore on the side of my tongue, incisions hurt, back hurts, and I’m exhausted. I didn’t sleep much last night even though I was at home in my own bed.

The surgery went smoothly, in at 10am, out around noon, and left the hospital at 5pm. The anesthesiologist was really really nice, and so was the OR nurse. I didn’t get to talk to my doctor after because he was called in for another patient, but he told Hub I did well and had very little blood loss. I think I had some issues in recovery because they kept me a little longer than anticipated.

I was really nauseated and dizzy in the bed areas, so I didn’t even move around much. And they gave me vicodin when I said I had pain (they didn’t even ask…I really did not have a good post-op nurse), but I think that messed me up worse. I finally drank a little juice and when I peed, they sent me home.

Getting in and out of bed at home was bad last night. I really struggled and it was totally embarrassing to do so in front of Hub. I felt so helpless and in so much pain. This morning it was easier. Now I’m in the recliner. We’ll see how it goes when I get up to go pee.

I’m tired and my face is SO HOT…but the thermometer I have says no fever. I’ve eaten a little turkey (last night and this morning), so at least I’ve had some protein.

My anxiety is manageable. At the moment anyway.

And now I have eye floaters that are bugging me, so I’m going to end this. With the exception of saying HUB IS SICK. He has a damn cold, which really came on Tuesday night. Ugh. So he’s going to go sleep later when my mom comes over to sit with me.

That’s my update. Thanks for thinking of me, ya’ll!

 

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They’re here

The nerves, they have arrived. They’re gaining ground. I’m trying really hard to avoid them, but they sit with me, and they taunt me.

I’ve been trying to stay busy, changing sheets, washing the second set so I don’t have to rely on Hub to do it at the last minute (which is when he’d wait to do it). I did all the laundry in the baskets and put it all away. I made fresh lemonade for my recovery. I made split pea soup in the crockpot in the hopes that it would help me keep from getting constipated (soooooo much fiber) after surgery. I cooked portabello mushrooms and made my ricotta cheese mixture to eat on top of the mushrooms for after surgery. I have sliced turkey for easy extra protein. I have laid in food and snack supplies, drinks, been to the library for two dozen books, been the craft store for five skeins of yarn. I have my bag basically packed, my advanced directive packed, my list for the anesthesiologist. I have gluten free snacks for the hospital. I have my stomach pillow for the car ride home. I have the pillows prepped for my bed to help support me if I want to sit there after surgery. The recliner is also ready for me. My parents are going to take our dogs, so we have to pack food and treats for them…tomorrow.

Hub will be home with me Thursday and Friday, as well as the weekend and the holiday on Monday. He usually works from home on Tuesdays and Wednesdays, so if I need him around, he can be home those days next week, too. So I’ll have his help if I need it.

I’m as prepared as I can be. And I’m nervous as hell. I don’t feel panicky (though I had a few moments of it earlier today, which I shooed away by continuing to DO STUFF), but I do feel nervous. I feel like I’m “faking it til I make it” kind of thing. Like I’m just lying to myself about how I’m feeling. Am I masking anxiety? I don’t know. Does it matter if I’m faking it? I don’t know.

My aunt called to wish me luck tonight. It was a weird conversation. My primary care doctor wished me luck. My gyno wished me luck. I’m appreciative that people are thinking of me, but I’m not really DOING anything. I want to tell people to call the surgeon and wish HIM luck. Tell him how they want him to take care of me and do a good job and make sure the surgery goes well. He’s the one doing the work, yah? But I get it, and I’m thankful for people who care about me.

I keep thinking “this time next week it’ll be all over.” Tomorrow is bowel prep day. And it’s the day they’re going to call to tell me what time the surgery is scheduled for. I’m going to Mom’s radiation appointment with her (to sit in on the doctor’s appointment), then I get home and almost immediately start with the bowel prep. I’m going to have to have the house phone forwarded to my cell # so I don’t miss the scheduling call, if they haven’t called by the time I leave the house. All this is making it more real, and making me more nervous.

In case I don’t post tomorrow, thanks to everyone for being a part of my journey. The more we share about our worlds, the more we learn how alike we are, and the more we find we’re not so alone.

 

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Finding strength

My mom came home the other day and brought me this. The stone has a tiny little air plant in it. Something I can’t kill, supposedly. We’ll see about that…

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I spent the last couple of days looking for stones that I could use on the day of surgery. I told T in our last session that I was struggling with the habit of needing to write letters to Hub and my parents before my surgery (I used to write letters to Hub when my health anxiety told me I was dying). Not only was I wanting to say things that I might not feel they hear from me enough, but I also wanted them to have something to hold onto and to be able to reread words I had written just for them. I also started telling her I wanted my husband to not run away or close off from my family, because not only would they need him if something happened to me, but HE would need THEM. And T immediately caught me and reminded me that I was trying to control a situation that was not of my control. She handed me a black, shiny rock that she always has sitting on her table in her office (for people to fiddle with) and told me to look at it in my hand. I stared at it hard, but to me it was just a rock in my hand. Then T told me that it represented control, which is generally a false feeling. Then she told me to open my hand and let the rock fall to the ground. I was letting go of control. I got the idea.

So I wanted to get some stones that said “Trust” to give to the surgeon, the anesthesiologist, and the OR nurse, so I could watch myself giving my trust to those people. To reduce my anxiety and my need to control things. But none of the stores I went to had stones with ANY writing on them. I tried to explain to my mother what I wanted, but she didn’t quite understand. She brought me the little gift above, which does its own trick for me, even though I can’t take it with me to the hospital. Right now it’s sitting on the ledge next to my recliner, right in my view. I like it a lot.

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I went walking around my yard yesterday afternoon trying to find any stone I could clean and write on. I found a couple, but not exactly what I wanted. I’ll go trolling through Hub’s stuff later to see if I can find something that will work, as he often uses stones (usually glass, though) for some of his gaming.

The hospital called yesterday to interview me over the phone before surgery. You know, asking all the questions they need to know…allergies, medical history, etc. It was a little more real after that…and in fact I ended up crying last night at a rather inopportune time. I think it sort of all hit me and I was feeling overwhelmed. Today, when Mom and I went shopping and to the library, I felt okay. I feel mostly okay now, but starting to feel nervous. I suspect it’s the kind of nervous most anyone would have at the thought of an upcoming surgery. If I weren’t nervous at all, I’d be worrying that I was disassociating from everything. So I’m okay with how I’m feeling. Well, as okay as you can feel when being nervous and waiting for surgery day.

 

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Pre-op appointment completed

I had my pre-op appointment this afternoon. I spent more time with the nurse getting the EKG setup than I did with the doctor. I don’t love my primary but I don’t hate her. Today, unfortunately, she seemed really uninterested in my being her patient. She asked me one set of question twice because she “couldn’t remember if she had asked them already” and she’d be in the room less than five minutes. What the hell? But on the up-side, they were on time taking me back to the exam room, the majority of my wait-time was minimal, and I was done less than 20 minutes later–five of which were taken up by checking out and doing a survey of how my appointment went on an iPad. Also, good news, despite my white coat syndrome, my blood pressure wasn’t terrible. And no nurse chased me down the hall to tell me she was really worried for me and here was a flyer on a low salt diet (true story, this actually happened the last time I was at the primary’s office when I saw the nurse practitioner to see if I was dealing with allergies or a sinus infection…my bp was slightly elevated which I KNEW was because of WCS but the nurse chased me down the hall after my appointment yelling WAIT WAIT! and told me she was so worried for me and handed me the papers). I mean, good on her for caring, but my BP is pretty normal at home and I know (and tell them all) about my WCS so they don’t freak out and try to put me on BP meds.

After my appointment at the doctor’s, I had to drive to the lab to get my blood drawn (stupid insurance won’t let me do it in the doctor’s office but rather I have to go to an independent lab to do it). It actually went REALLY quickly where normally I have to wait an hour or so to get in. I was in and out in less than half an hour, with the longest part (almost) being walking to and from the parking lot to get to the lab. I was glad it was all over and now I have to hope that the blood work gets completed in time to get to the hospital an entire 24 hours before my surgery. This was the soonest the primary could fit me in and I couldn’t get the blood work done without seeing the primary and getting the order put in. Bleh. Not much I can do, but it still stinks.

I mowed the lawn again yesterday. It was actually a really nice day again, with just a little sun, a nice breeze, and cool temperatures. I was proud that I got the lawn done again, but last night when I was ready to go to sleep, I realized that my neck was really hurting. It gave me trouble all night (along with the dogs who woke us with furious crying and barking at 2:30am) and has plagued me today. It’s a muscle pull where you can’t turn your head in one direction? It’s very uncomfortable and I hope it goes away quickly. Not only is it giving me more trouble sleeping (like I don’t have enough issue with that), but it’s bothering me even when I’m just sitting.

My sleep still sucks. I feel like I’m up every hour or so. I’ve gone to sleep late the last two nights in the hopes that I could fall asleep more quickly at night and sleep later in the morning. It’s not a good habit to be in because I can easily get into the habit of staying up late and NOT being able to sleep in the morning. I’ve been yawning all afternoon. I am going to go back to my regular schedule, even though my pattern isn’t working too well in the mornings. Plus, my PVCs are bothering me at night, which keeps me from falling asleep in a short amount of time. That means every time I was up, I have trouble getting comfortable and getting back to sleep. I’m also having weird dreams and nightmares…still. What’s up with that?

That’s it for now. I gotta go put my heating pad on my neck.

 

 

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Here we are

Mom had her 8th radiation treatment today. It was the second time she was scheduled to see her doctor after the treatment, so I went with my parents to sit in on the appointment. Luckily, Mom hasn’t been experiencing any side effects yet. She’s taking an anti-nausea pill every day just in case, and so far it seems to be working. Unfortunately, I think it’s affecting her taste buds (she had the same problem with the anti-nausea pills during chemo), but if that’s the worst… They did say that the fatigue and other side effects might not start until three weeks into treatment, but we’ll see. I did think it was interesting that Mom told the doctor that today she was 1/3 of the way through treatment. But if that’s how it works for her, that’s fine. Mom says she’s still taking her gratitude prompts to her appointments every day, so that’s good, too.

I’m just about eight days out from my surgery. I have been trying to find lounge-dresses to wear after surgery so that I don’t have to wear pants that might aggravate any incisions I might have. I went all over on Monday and found nothing. I was so disappointed. I do have a whole list of what I want, so I guess I was really narrowing down my options. But mostly the two places I went had nothing long. I really want an ankle-length item to cover my legs in case I have company. Plus, if I’m going to be sitting in my recliner in my family room, I want to have my legs covered or Butthead will try to lick my legs all the time. And YUCK. Today Mom and I went out to a discount store to see if they had anything. I was surprised at how much clothing they had in my size, but everything was polyester, and I really don’t like the way polyester doesn’t breathe. In the end, though, I bought something that felt like jersey but was polyester (for a whopping $8) and another that was the rayon/spandex mix that I was really looking for (which was $20). Mom was so happy to be able to help me go out and find something. She’s still upset that I’m not really wanting her to be at the hospital with me, but I need to know she’s taking care of herself and that she and my dad will be taking care of our dogs. I am both hopeful and worried that I’ll be home the same day, so it won’t be a long, drawn-out stay in the hospital where people will need to come and go to visit me. Mom was in the hospital for four or five days, so we came and went a lot. Like I said before, my doctor said if I go in early enough in the morning, I might be able to go home the same night.

So the deal is, I’m nervous. But I’m not panicking and I’m not anxious. I feel like I feel like a normal person who would be nervous before surgery. I’m keeping my information-gathering to a minimum. I haven’t started packing (or thinking about what to pack) or putting things aside to take. I haven’t looked at the pre-surgery prep (bowel-prep) information. I’m trying to take all this one day at a time. I got my lounge wear, I’ll go the library this weekend to get a bunch of books. I have yarn. I can watch movies on our on-demand. I have good pillows and blankets and I’ll be sure to have lots of water to drink and pretzels to snack on. We’ll go to the grocery store this weekend and make sure we have enough easy-to-prepare foods. I already have a bench seat in my shower, so if I need to sit to shower, I’m okay.

I’m okay. I hope my health anxiety doesn’t spiral during recovery, but I can’t do anything about it now. I’ll have to work on that as it comes. I do, however, have to stop taking my digestive enzymes and probiotics before surgery (starting tomorrow), so I’ll get to see if I really need to stay on that stuff to keep heartburn away or if I am able to manage without it.

My PVCs are plaguing me tonight. What’s up with that? They haven’t been too bad recently. Some issues trying to fall asleep, a few here and there. But tonight…more often. I could do without that annoyance. Ferreals. Also, my sleep has been really crappy recently. Dreams, nightmares, etc. I’ve also been waking up earlier and earlier. That’s really frustrating for me since I’m going to sleep at the same time every night. I really need some sleep. But hey, after surgery they say I’ll be napping a lot. Maybe I’ll make up for the lost sleep? Until then, I’m just tired.

Tomorrow I’m planning to mow the lawn. The weather is supposed to be 70s and breezy. My kind of lawn-mowin’ day. Mowin’ zen, here I come!

 

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