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Test results update

I’ve completed recent tests and received all the results.

Neurology
Neurology tells me my blood work is completely normal, which tested for myasthenia gravis and muscular distrophy. My EMG was “long and thorough” and normal. My first and follow-up physical exams were normal. In our follow-up appointment last night, the doctor finally admitted that he was looking for signs of MS–which he says he didn’t mention prior because he doesn’t like to frighten patients–but found none. After he said that, he said he could suggest a brain MRI, but found no symptoms to support getting one. I told him I’d had a brain MRI five years ago at an ER visit and that they found no signs of any issues (other than a schwannoma that was then “not found” at a follow-up appointment). He said if it was five years ago, and I was 40, that if I had MS, they would have seen signs of it already in the MRI. So that was even more reason to skip the MRI. His final words? Wait it out, see if any other symptoms come up, and go out about my life. He said I could try seeing a rheumatologist, but it seemed like a half-hearted suggestion.

Allergy
I saw the allergist on Tuesday. He was very nice, listened to everything I had to say and asked questions. He told me up front he didn’t think the fatigue/exhaustion was related to allergies, but said it was worth finding out what kind of allergies I had going on. He didn’t seem to understand my wheat “allergy” and asked a lot of questions…including when I told him that I’d been gluten free for at least twelve years, he said “and you’ve never eaten just a bite of anything? not even cake or cookies?”

W.T.F.

Would he say that to someone who had a reaction to peanuts in the past and thought they might have peanut allergies? “Not even a peanut butter cup? Not even half of one?” It was a little frustrating. I’m not sure if it was because I’m fat, or because he didn’t think the “allergy” I had was important enough? Either way, I just said, “No, it makes me feel incredibly horrible and I saw no reason to do that to myself on purpose when I knew what the cause was and it could be avoided.” He accepted that and moved on, but I suspect he didn’t really believe me. He tested me with the skin test, both a needle and a “scratch” test (not at the same time or in the same spot), including tests for wheat, rye, and barley. I had no reaction to any of the needle test–including zippo response on the wheat–but the scratch test (which is more “invasive”) popped “mildly” on dust mites. He did not test me for wheat on the scratch test… However, I will note, that when they did the scratch test version, within five minutes of them doing it, their “histamine” scratch area gave me the same response as what I get to eating wheat. My face started to get red and hot, as did my ear. When we went back so the nurse could read my results on my arm, we told the doctor, and all he said was “interesting.” But for me, it shows me that THAT response IS my histamine response, and points back to the wheat giving me a histamine reaction. In the end, he noted it as an “adverse reaction” to wheat reported by the patient. WhatEVER. I read that both skin and blood tests for allergies are only 60% accurate anyway.

Gyn/Oncology
I had my CT scan last Thursday. For the first time, I had terrible stomach issues after drinking the barium, which sucked. I made it to the radiology office, had more stomach issues, then had to stand and talk to the check-in person while she figured out what needed to be done. Then I had to go wait because they wanted to call my doctor’s office to confirm they didn’t REALLY need without contrast as that causes unneeded radiation in my particular case. When they finally got through to the doctor and recalled me to the check-in station, I was then informed that I had to pay for the CT Scan because I hadn’t met my deductible and that I had been notified ahead of time that I would put down a couple of hundred dollars in advance and follow-up the remainder payment later. I had been told no such thing…and I was PISSED and tired and felt like shit and I paid the advance because I needed the test and so what was I supposed to do? The woman doing the CT was SO NICE y’all. She really took care of me, was kind, and helped me work with my impinged shoulder. When we were done, I went back out to where my father was waiting for me in the car because I haven’t been driving myself due to my leg weakness and my imbalance and fatigue. The radiologist said my doctor would have my results by the next afternoon, but I heard nothing. I spent the weekend feeling mild terror, because when I was diagnosed with the cancer, my oncologist actually called me on a Sunday  night during dinner. It was like a little bit of PTSD to get through dinner Sunday night, but no phone call came. I finally found the results online at my oncologist’s portal on Tuesday, which said the scan was clean. Oddly, I never got any notification or update directly from the doctor, which was unusual for him.

Insurance bullshit
As it turns out, apparently the radiology center was correct and I had to pay my entire deductible for the scan because I have SHITTY-ASS INSURANCE (this is new insurance for us since May b/c Hub changed jobs). I’ve never had to pay anything for CT’s or x-rays or blood work when I go to a lab/radiology center. And I also see now having inspected the insurance more deeply that they don’t even cover 3D mammograms. And not only do I pay deductibles for all this shit, but I also have to pay 10% co-insurance. Let’s not forget that I have a huge deductible for out-of-network which means they aren’t even close to covering any of my sessions with T. I seriously thought that we had the most obnoxioiusly horrendous insurance until Hub got a job offer from someplace new and we found that they were offering something called an EPO, which would cost us $50 more a month than we’re paying now and offer us waaaaaay  less coverage. Apparently EPOs are the “new” thing that are essentially HMOs without needing referrals to see specialists, plus they have higher deductibles and cover fewer things. And insurance companies are suckering people in because they think the EPO is more like a PPO (higher level of coverage and out-of-network coverage) when in fact they are more like HMOs. So insurance companies are yet again screwing customers with lies and deceptions. Woo-hoo. Hub, in fact, turned down the job because of the health insurance and was then told the next day that he was the second “high profile” candidate in recent weeks to turn down positions because of the health insurance.

Primary care doctor
My last appointment with my PCP left me with the suggestion to go see a sleep doctor and/or the infectious disease doctor for chronic fatigue syndrome. She also told me she won’t write a note to the insurance company that indicates I have myofascial pain syndrome without me coming back in for yet another appointment–which will cost me even more money–so that insurance might consider covering some small portion of my trigger point therapy. (Neither would the neurologist, despite the fact that MPS is supposedly a neurology classified syndrome AND I was IN HIS OFFICE when I asked him.)

And so, here I am, in the same place with no plan forward. I am pushing myself to do more to see if I can just IGNORE the symptoms away. My imbalance is bad and I’m struggling to keep myself upright. I DID drive myself to PT on Monday, but it is literally five minutes from my house, on two roads that see minimal traffic. When I talked to my PT person, she said she had a client who was diagnosed with a virus who had horrible fatigue for over a year…but that after that she was fine.

I am burned out on doctors. I don’t know what I’m going to do now. Wake up, step forward, keep going. Try not to let my anxiety get the better of me as much as it has. Accomplish things when I can and celebrate when I do. Rest as needed.

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I need a minute

I had my hair colored yesterday (more in another blog), which took about two hours. This morning I had to get up early to go to PT (her first appointment of the day) so that I could get to my neurology appointment on time.

This was my second PT appointment, the first with full treatment since initial appointments include lots of time for evaluation and pre-treatment measurements. I’d been doing the stretching exercises she assigned me since Friday, so I have been doing some work. Today, though, she did some more stretching…and it hurt. The physical therapist is a very nice, very low-key woman, who spends most of the appointments so far reassuring me that I will make progress and I will feel better. I’ve told her that I am VERY familiar with PT, as I’ve been multiple times over the years. Even so, she seems intent on keeping up with the reassurances…I guess she thinks she is being encouraging, I’m not sure. Anyway, the appointment was painful and I left feeling sore and tired.

When I got home, Hub told me he couldn’t go with me to the neurologist because he had a big meeting come up at work. My father offered to go, but I really didn’t want to have to deal with my dad’s pushiness, especially with a new-to-me doctor. So I said I’d be okay, and when the time came I headed off to the doctor’s office.

The doctor was on time, which was shocking to me, and his space in the suite was a combo office and exam room. It was a little odd, I’ve never seen anything like that. Normally you are in an exam room or you meet with the doctor in a separate office space. We sat down and he asked me what was happening. I gave him my history as best I could–including the recent bloodwork done that had all come back normal–and told him the issues I was having recently. He asked me a ton of questions, most of which I gave negatory answers to…it almost looked like he was reading from a list on his laptop! He then went through the litany of physical neuro tests–most of which I’ve been through before. When that was done, we sat back down at his desk and he stared at his laptop for a minute. Then he started saying that I didn’t fit in this category (ALS) or that category (Myasthenia gravis) or even that category (Guillain-Barré)…and each time he described WHY I didn’t fit. Having been alone, I tried to remember every reason why I didn’t match those categories, but I was busy thinking “oh, but I do have trouble swallowing!” (but I don’t REALLY) and “oh, my upper body IS weak” (but not REALLY) and “oh, I do have tingling!” (but probably that’s when I overdo or my limb falls asleep). It’s like he was giving symptoms (more than I just described) and I was latching onto them, worrying that maybe I really did have those symptoms and they were just on the mild side and what if I had missed the symptoms??

It was hard. I don’t remember which disease was ruled out by which missing symptom(s). I know he didn’t specifically rule out MS (multiple sclerosis) and I don’t know why.  I was afraid to ask. The final result was the he wanted to start with bloodwork for some muscle thing, and that he wanted to do an EMG (electromyogram). He said he had time to do it later that afternoon or tomorrow because of cancellations, but I didn’t want to do something unknown when I had the wedding this weekend. I said I wasn’t available and at that point the best they could do was schedule for the end of August. So I put it on my calendar and left the office.

I drove home, feeling weak and tired…and so disappointed, even though I really had no hopes for the appointment. I guess some part of me thought something would come of it, but it had to be pretty far buried in my subconscious. When I got home, Hub was still on the phone for his meeting, so he slipped over to greet me briefly. I said I was going upstairs to change my clothes, then decided I wanted to lie down for a while. I called my father to update him, had to listen to him talk about the time HE had some sort of muscle electricity test thingy twenty-plus years ago for a possible pinched nerve, then I stripped and got into bed. I barely settled in when Hub came in to check on me…he wanted to know if something happened that I hadn’t told him.

I cried. I don’t want to be sick again…or more than I already am. I’m tired of being sick. I’m tired of being tired. I’m tired of not knowing. I’m tired of having to change my life because I’m sick again, or more. I’m tired of having to grieve for the life I had, or the one I’ll never have, because I’m sick again, or more.

Hub hugged me, and even though I knew he wanted to hover and smother because that’s his M.O., he left me to rest. I just wanted a minute to mourn, you know? I needed a minute to come to terms with the disappointment, with the fatigue of it all. No one ever knows what is wrong with me. I’m always a syndrome…a catch-all that I’m dumped in because I don’t match any known disease or medical terminology.  I’m tired. So fucking tired.

I laid in bed for several hours–though I got up briefly to eat some soup because I hadn’t eaten or drunk anything prior to that–and just did nothing. I just couldn’t get up the energy to participate in life. My body and my soul didn’t want to body or soul.

I got up and had dinner later, and I talked with Hub like I was “normal”, but inside I’m hurting and I’m disappointed and I’m lost. Again. And writing these things has me crying again…

 

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Fake (my) news

Do you listen to yourself talk? Do you have an internal editor who sifts through what you say before you say it? Do you tell people the truth when they ask you questions?

I don’t remember when this happened, but one day I remember listening to myself talk as if I were watching the conversation from outside of it. Not in a derealization kind of way, just in a way of WTF am I doing? Someone had asked me something and I was answering them, and the words coming out of my mouth were–technically speaking–lies. I wasn’t lying with malice, I was lying because I didn’t want the person to know how shitty I was feeling. I was lying because I didn’t want to have to deal with the eventual questions of why and have you seen a doctor and have you tried x. I was lying because I didn’t want the person to pity me, or to worry about me, or to think less of me for my health issues.

I’m in pain almost every day, from various parts of my body. Possibly from my mind, who knows. I feel lousy the majority of the days in recent years…not pain specifically, but sometimes it’s anxiety, sometimes it’s due to a known illness, sometimes it’s what my mind conjures, and sometimes it’s some unknown ailment. I get tired of telling people how I’m feeling when they ask. And for the most part, it’s not about them, it’s about me. I don’t want to deal with whatever the blow-back is, as I said above.

And on this particular day, I came to a realization of how often I lie (without malice) to people. Clearly I do it without forethought or planning…and in some cases it seems to be an automatic response. I try not to do it with Hub (he can often see through me anyway) and I definitely try not to do it with my therapist. Sometimes I will edit the “truth”, even though I suspect both of them know it. But with everyone else? I lie. I give fake answers. I edit the things I’m saying to meet the person I’m conversing with.

I hate how are you? I despise how are you feeling? I always feel put on the spot to answer in a manner that the person asking can understand or respond to in a manner that works for them. I absolutely abhor when Hub asks me what hurts or does something hurt? Again, no one else’s issue other than mine, but this is the truth.

I don’t remember a time when my body didn’t harbor pain. I don’t remember a time when my body didn’t report some form of illness–real or anxiety-induced. I don’t remember a time when I didn’t lie to people about those things.

How are you? Shitty.

How are you feeling? Shitty.

What hurts? Everything.

Giving those answers…what does it do for me or for the person asking? Nothing. It puts me on the spot to explain, clarify, defend, respond…and I don’t want to anymore. I would very much wish that I wouldn’t need to anymore, but in lieu of that, I lie.

How are you? Fine, thanks.

How are you feeling? Good days and bad days.

What hurts? Nothing new or different.

If you can’t beat ’em, fake ’em?

 

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Liar liar brain on fire

I’ve been struggling with my health anxiety for over a week. As per usual, it’s pretty centered around my heart. I’ve made an appointment to see my cardiologist, but the online scheduler only had an appointment for NEXT Monday. I’m going to call in the morning to see if they have anything sooner, whether it’s a cancellation or what. If they can’t fit me in sooner, I might also check with my regular doctor–but getting in to see them is pretty difficult these days.

I keep trying to tell myself that if I’m still alive after this week of potential heart pain, then it’s likely just anxiety plaguing me and not a “real” issue. It’s my anxiety lying to me. My left arm hurts, my back hurts, my jaw hurts, I feel slightly off-balance, I’m nauseated. All those things could mean a heart issue…and all those things could be just my daily life. I can’t get around my lying anxiety brain to figure it out. I’m both hot and cold, sometimes feeling sweaty when there’s no sweat there. Right now my palms are warm and feel like they’re sticking to my laptop, but my feet are freezing cold and clammy.

I’ve had a pain in my lower right back today. I always have pain in my back, but this feels different. Is it real or anxiety? I hate that I can’t tell. I don’t understand how I’m supposed to know what is real and what isn’t. I don’t know when to seek emergency treatment and when not to. I don’t want to spend my life in the emergency waiting room…our local ER is terrible and our trips tend to last no less than 6-12 hours there. Most of that in the waiting room trying to get a bed to be seen (usually by a dismissive physician or physician’s assistant).

I’ve been depressed and not acting normal, not moving around much, not eating well, not drinking my water. I know this is all contributing to the fact that everything hurts me, but I can’t seem to get around it. I’m sitting poorly, also contributing to my pain. I’m not sleeping, some of which from pain, some because of the fear of having a heart attack.

I can’t even tell you how many good-bye letters I’ve written. In my previous house, I used to have them scattered around in weird places. Mostly hand-written in the dark of night when I was sure I wouldn’t make it through the night. Sometimes I write them on my computer and drop them into weird folders. Am I the only one? Does anyone else do this? I so wanted to write one the other night because it was that bad. I didn’t do it. I wanted to wake Hub and tell him good-bye, just in case. I wanted to do it before he went to sleep. I write the notes because I don’t want to frighten my wonderful husband…I can’t stand keeping him awake when he’s the one getting up early every morning to take care of the dogs and then go to work to support both of us.

I was sitting here earlier, just waiting for the time to go by. And I started wondering WHY I was hoping for the time to go by more quickly. I know I want to get up first thing and make calls to the doctor, but really, what is that going to solve? I’m not likely to get an appointment right away, so I’m still stuck in this anxiety limbo.

As I type, I’m restless. My jaw is hurting again. My back. My arm. I want to sob, but crying only makes me feel worse. I want to curl into a ball, but it hurts too much. I want to lie down and go to sleep but I’m afraid. I heard once that there are more heart attacks in the early morning hours, so I’m afraid to go to sleep because I’m afraid to have a heart attack overnight or in the early morning hours. For some reason my brain thinks that if I’m awake, I won’t have a heart attack. Or maybe I think if I’m awake, I’ll be able to get help if I start having a heart attack. Probably the latter.

This sucks so much. I hate this health anxiety. I hate that this is one of the few things that I’ve not been able to conquer. Sometimes I do so well, but other times I’m just so suffocated by it.

 

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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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Surgical consult conclusion

I had my surgical consult. I’m sort of feeling odd about the whole ordeal, because in effect, it was not much of an ordeal.

We waited over half an hour for my appointment. They had signs all over the office saying, “We apologize for the delay, but we are giving our patients our utmost attention. When you are in your appointment with us, you will appreciate that we are doing the same for you.” I was actually doing pretty well this morning before the appointment, and even on the way (which took over an hour because of traffic and Hub missed a turn that required us to squirrel around to get back to the right street). I didn’t feel jittery or anxious. While we were waiting in the doctor’s waiting room, I also felt okay. The place was mobbed…I’ve never seen a doctor’s office like that before. Later we heard there were four doctors seeing patients that day, so I guess that’s why there were so many people. Plus, almost no one came alone, so for every one patient there was a second person with them.

We were finally called in to an exam room and I got the interview with the nurse. My BP wasn’t horrible, but it wasn’t normal either. I’ve seen worse for damn sure, so I was okay with it. The nurse asked a couple of questions, then told me to undress from the waist down and wait for the doctor. It was probably another ten minutes before the doctor came in.

We met this doctor before and I knew what he looked like and what his mannerisms were. I like him a lot because his bedside manner is very mellow and when he asks you a question, he seems to really listen to the answer. If I were to try to give you an image for the doctor, it would be this:

Dr Surgeon

Dr Surgeon

The funny thing is, he’s really really tall, but he kind of has this long, droopy face. I totally told Hub afterward “he’s Droopy the Dog, isn’t he?” and Hub laughed and agreed.

Anyway, what was odd was that after I explained why I was there and why I wanted the hysterectomy, there was no conversation about other options. He didn’t try to talk me out of it or suggest waiting any further. I told him about my mother’s history and about how I had gone the conservative route two years prior after consulting with him. But that it was time to get the surgery because I didn’t want this getting any more advanced–either in size or in potential cancer. After a brief exam, during which he noted that we really were talking about big uterus and fibroids, he began talking about being able to do the surgery laproscopically. I was actually rather surprised considering the size of the uterus and large fibroid (I have 2 fibroids, one as big as the enlarged uterus and one smaller), so I said as much. He indicated that it wasn’t about the size so much as how available they were and if the uterus was “mobile” enough to be removed. He said there’s always a chance to have to convert to an abdominal incision, but most of the time that they start laproscopically, they are able to finish it that way. He said conversion rates are really really low. So that’s good, because recovery is more like 2-4 weeks for a laproscipc surgery and 6-8 weeks for an abdominal. And when I went to schedule the surgery (yep, I did it before I even left his offices), the scheduler said that I might not even have to stay in the hospital overnight, depending on what time the surgery starts. Whoa.

Anyway, after my asking a couple of questions (like how do they make sure there’s no possible spread of any microscopic cancers if there might be something hiding somewhere–they bag the organs INSIDE the body before removing them through the tiny incisions…so weird!), I asked if Hub had Qs. He asked something (I don’t remember what it was) and then we were on our way down the hall to the scheduler’s office. When we sat down, she wanted to know what our preference was for a surgery date, and I said “not next week” as a joke. So she said, “Okay how about the week after.” I sort of swallowed and squeaked, “Okay.” She wanted to know if we preferred to wait until after Memorial Day, but we don’t travel on holidays, so I said it didn’t matter.

So, I’m scheduled for two weeks. When we were done and on our way out, I asked Hub if he felt okay about all this. I told him I felt sort of numb, and I felt like I didn’t ask enough questions of the doctor or spend enough time. I mean, I did my research so I knew my options and I knew what the different surgery options were. I knew I wanted the hysterectomy, so I wasn’t looking for other options. I knew I wanted this doctor to do the surgery, and since he said YES to laprcoscopy, I was all good. So why did I feel the need to spend more time in the doctor’s office? Why did I feel like I was missing something? Hub had no answers. He felt like we got the information we needed and did what we went to do.

I came home and told my mother about the date. I emailed my brother to see if he’d come to the hospital to sit with Hub during surgery, since I don’t want my mother doing that and I don’t want Hub sitting alone. I looked up on the HysterSisters website as to what to bring with me to the hospital and how to prepare for after surgery. I got all the paperwork for my pre-op appointment with my primary (they don’t have any appointments for me so they have to talk to the doctors and see how they can fit me in), I got my pre-op bowel clean-out (fun times) instructions and I got my pre-op instructions. I won’t know what time my surgery is until the day before (WTF), and I won’t know if I have to stay overnight until after surgery.

I’m not obsessing over researching stuff on the internet. I’m trying to be INFORMED with enough information but not over-inundated to the point where I’m freaking out. Somewhere in here, in me, is some kind of emotion…but still I feel numb. So much so fast, even though I wanted it over with. And to some extent I’m GLAD it’s going to be over fast because I won’t have a ton of time to obsess and freak out. We’re doing mother’s day brunch here for 14 people, so this week is going to be cleaning and cooking. Next week I hope to be prepping my house and my household for post-surgery…and getting myself gathered to be in the hospital.

I feel it, though. The fear. The thoughts that I need to do a living will. The thoughts that I need to write my husband a letter saying all the things I would want him to know if I die. The thoughts that I want to leave notes for my parents and brothers and my long-time friend (whom I see very infrequently). The thoughts that there are things I want to do before the surgery because I might never be able to do them. The thoughts of how my loved ones will be without me. Who will take care of my parents. Who will love my husband. Who will take care of my dogs. It’s there, deep down below the surface, waiting to find a crack or crevice to slip through and get me…

 

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