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Purpose and control

I was watching television and a character said he became a doctor because it was always his way to try to control things. Being a doctor made him feel he was in control of his life and his patients’ lives.

I was sitting there watching and it was like one of those AHA! moments. I started wondering if my fiction writing (which I’d been doing since I was a pre-teen) was my way of controlling things in my life. Or finding a way to have control in a world where I really had no control, especially when I first became sick…which is when I started intensely on my writing career and when I was first published.

When I talked about this with T, it also made sense as to why I haven’t been able to write very much in the last few years. I’ve worked so hard to release my idea of controlling everything, and so my default way of writing–and seeing my writing–is no longer the same. T said she could see exactly what I was dealing with, and she felt the discovery was a very interesting and insightful one. I’m not sure how I will be able to write again, but T thinks I’ll find a way. I certainly don’t want to go backward in order to find my ability to write again, but as I am now, I feel like my solace in writing is gone. I used to be able to disappear into my books and create lives and worlds where everything was the way I wanted it to be. But now, where I see that control really is an illusion–even though I’m still working on that in my own life–I’m not sure how to create stories the way I used to.

At the moment, I even feel like I’m struggling to get my ideas across in this post. I feel jumbled and like the words I want are not here. It’s sad and disappointing right now. The thing that I always went to feels like it’s well and truly gone. I mean, I know I haven’t worked on any of my books in recent years, nor have I really started anything new of note, but I guess I thought it would still be there to save me.

It sounds dramatic, but really my writing did save me when I got sick. There were days I never made it out of bed except to go to the bathroom, and yet those were the days where I wrote my books. Those were the most productive days of my writing career. Through pain and vertigo and fatigue…I wrote my books. I wrote deep into the night, hours and hours at a time, and slept through until noon. I would eat lunch and then go back to my writing. It kept me sane, it gave me a life to live when I couldn’t live my own life. My hands would cramp, my arms would ache (I wrote my books in longhand), my neck would hurt…but I kept writing. That was the first time I ever wrote a full-length book, and it was the first time I persisted in finding a publisher for that book.

And here I am, in need of that solace, and unable to find it.

I’m not the same person I was, no question about it. I just don’t know how to be the person I am and still have the purpose I had then.

 

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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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Everyone has their own story

My mother’s best friend (other than me) is a lovely, wonderful, amazing, loving woman who worked in the same office with Mom for a LOT of years. Sixteen years? Seventeen? I’m not sure specifically but M has been a part of our lives for what seems like forever. She loves my mother like a sister, and she’s basically part of our family. She and Mom used to be early-birds at the office, so they always talked early in the morning as they shared coffee or tea, or breakfast, or whatever. And in recent months, M has told me privately that my mother has shared a lot with her, especially how Mom worries about Dad, and how he will handle her death. Also, as we would have all expected, how Mom worries about all of us. They talk on a different level than Mom and I do, and I’m incredibly grateful that M is in our lives…that M is a part of Mom’s life.

M stopped by to visit on her way home from somewhere today, sort of on a whim. She called from the car and then stopped by Mom’s house. I ran over to say hello and to give M a hug, and I ended up walking her to her car as she was ready to leave. M told me that another co-worker of theirs–who has been living with cancer for something like 8 years–is coming to the end of her journey. That’s where M was this afternoon, visiting that co-worker/friend. She couldn’t bear to tell Mom that the other person had few days left to live. M and I hugged, we cried a little, I told her to come again soon.

I went back to Mom’s to say goodnight, then started my walk home. As I did, I realized that M has a very different struggle than I do with Mom’s disease. M’s husband died of cancer after a long journey (I don’t like the word “fight”), now her best friend is dying of cancer…and another co-worker friend is even closer to dying of cancer. When M and I hugged good bye next to her car, I told her I loved her, and I thanked her for being a part of our family. Her tears were for Mom–as were mine–but I think that we both cried for ourselves a little. She has her story that she has lived, I have mine. Neither is better or worse, just different.

I have my own losses to live with, deaths and grief that I’ve struggled with. This is my mother dying now, but I felt the need to comfort M for her losses. I wanted to make it “okay” for her, even though that is in no way possible. I find myself trying to comfort the other people who talk to me about Mom. My father, my aunt and my uncle, my cousins, Mom’s friend, other extended family members… Not that they are ignoring me, because they aren’t. I don’t mean it that way. I don’t know what I mean. There’s a lot of that going on with me these days. I feel mixed up, numb and emotional at the same time. I can’t tell you how many times I’ve sat somewhere, absolutely silent and still, but inside I’m  wanting to rage and throw things and just go crazy. I don’t, but I want to.

Sometimes I wonder if one of these times when I break down, when I have some outburst or whatever, that I won’t be able to come back from it. I think that’s why I don’t always let go…there’s just this fear that I won’t be able to recover or crawl out of whatever pit I let myself fall into. It hasn’t happened yet, and so I hold on that small ray of hope.

 

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Too much or too little?

I had a session with T today, which was kind of all over the map. Part of what I wanted to talk to her about was V (pt 1 and p2). I haven’t written much about my sessions with V because I haven’t felt like we’ve done what I wanted to do. Very specifically, I approached and began seeing V so that I could attempt to do hypnosis with a therapist who specialized in it, versus seeing a hypnotist who had no therapeutic training. I was looking to get assistance with my insomnia type symptoms (I say “insomnia-type” because I don’t feel I have true insomnia, I just have shitty sleep), which was something V said initially she could help me with. In the end, she preferred not to use “hypnosis” and instead went with “breathing and relaxation” techniques to work with me. As well as EMDR.

I’ve had seven or eight sessions with V, and while I did discover where my “not enough” feeling came from, I haven’t had any progress with my sleeping. And I haven’t felt any other progress, nor has V seemed interested in pursuing hypnosis. I also feel very uncomfortable that at least once a session, she’ll say she’s not sure if X will work, or that she also struggles with sleep but I shouldn’t be concerned it will always be that way for me. I just feel like I’m talking to a therapeutically trained ME. And I don’t want to talk to me… It sounds weird, but that’s how I feel. So I pretty much had decided to discontinue sessions with V, but I’ve never…fired a therapist before. I didn’t want to make V feel badly because I didn’t want to continue. I know it isn’t my issue and she is a professional, but honestly she feels so insecure to me that I hate to feed that feeling by firing her. But I’m not getting what I want from her and I don’t want to continue if that’s the case. I already have T–who works well for my on-going needs–I don’t need another regular therapist.

So when I sat down after dinner, I crafted a short but complimentary email, and after re-reading it a couple of times, I sent it. Now I wait to hear back. Unh.

My plan, at this point, is to give acupuncture a go. I’ve had it before and although it didn’t help at that point (for horrendous menstrual cramps about 16 years ago), I know it does work for a lot of things for a lot of people. I just need to work appointments into my schedule, because I know acupuncture is an on-going treatment that often works better with multiple appointments per week, or at least one every week for a lot of weeks. But I definitely want to give it a try, for the fatigue/insomnia as well as chronic pain. T approved of the plan I had set out, and reminded me that I need to keep myself balanced or I was liable to break down.

That was the other conversation I had with her. I wanted to really find out how I know if I’m just avoiding everything by trying to stay busy and/or zen/zone out. I know in my heart that I’m feeling the emotions relating to my mother’s illness and the situation we are in. But I am concerned that maybe I’m not giving my emotions ENOUGH attention. How do I know? How do I know that I’m not mis-using my coping skills for avoidance purposes? She said there’s no answer that suits everyone. To try to pay attention to whether I’m avoiding things that need to be done or dealt with by using my coping skills, or if I’m still addressing things while fitting my coping skills into my life. And that if I spend more time coping/avoiding some hours/days/weeks, that I shouldn’t be too concerned.

I’m not well known for allowing myself to be emotional, so I worry about me avoiding or repressing the emotions surrounding what is happening daily. I just can’t decide what feels right and balanced. T tells me to quit worrying about it. Seriously, has she met me? 🙂

 

 

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Fraudulent

These days, I feel like a fraud, a lot.

My name is on a lot of paperwork. My responsibilities grow every day, extending to things I have no comprehension about. I spent at least two evenings researching legal terms to try to understand the trust that my parents’ lawyer put together for them. I have spent many hours pouring over the legal documents–alone, with my mother, with my brother–trying to figure out what the trust is actually saying. To find out if it is done the way my parents want it done. To find out what the future will look like when one or the other, and then both, have died. There are complications that make the trust not quite so simple. But then again, it’s all legal mumbo-jumbo, so there’s nothing simple about it.

I’ve had to sit in on a meeting with the lawyer as he explained the trust, then had my parents’ sign the paperwork. I’ve had to take copious notes on things I do not understand in order to repeat the information to my siblings. I’ve had to chase the lawyer, then return a phone call to the lawyer, then listen as he explains things again while I try to take MORE notes to explain things to my siblings AND my parents. I’ve been mid-way into making dinner when I’ve been called on the phone and summoned to my parents’ house to explain parts of the trust that I have no understanding of.

I’ve had to fill out paperwork to get bonds reissued. I’ve had to fill out online accounts to get online bond accounts created. I’ve had to fill out paperwork to get bank accounts changed over into the trust.

I don’t know how to do any of this stuff. I’ve researched and bluffed my way through. I’ve walked away from meetings, conversations, phone calls, summonses, feeling like a complete and utter fraud. I don’t have the answers. I don’t understand the terminology. I don’t remember–or know–why things were done the way they were done. And yet, all of this has been asked of me. And yet, I’ve answered the call to do everything they’ve asked of me…and I feel like a fraud.

My mother is making plans to take a trip overseas this summer. She’s buying tickets, making reservations, looking into itineraries…for a trip that even IF she is still alive, she will likely be too weak and too ill to take. I listen to her talk about the trip, and I keep my big mouth shut. I know she needs this. I know she needs something to look forward to and something to concentrate on. And every minute she talks about the trip, my heart breaks a little more. I won’t stop her from making the plans–even if she ends up losing money over it–and I won’t tell her she won’t be able to make the trip. I won’t tell her how much it hurts for me to watch her make the plans, knowing in my heart that she’ll never be able to follow through on them. And I feel like a fraud.

My whole body hurts. My knees are popping with every step the last couple of days. The back of one knee hurts. The back of one thigh hurts. My back hurts. My hips hurts. My shoulders hurt. My arms hurt. I limp my way to Mom’s house–there and back–feeling so tired and so painful. Yet when I’m in their house, I hide the limp and I hide the pain and I hide the fatigue. It’s all a lie. When Mom asks, I’ll tell her I’m “tired” but it’s nothing new. I have trouble standing because my feet hurt from the plantar fasciitis, but I stand anyway…I walk anyway. I don’t tell them. If I told them, they’d be upset and they’d tell me to go home or stay home. But things still need to be done and unfortunately, I’m the one around to do it.

I had a doctor’s appointment this morning. My mother scheduled an eye appointment without realizing I had an appointment of my own, so they went without me. On the way home, they were supposed to stop at the bank to get some papers notarized and others that needed a bank’s seal. I had all the paperwork marked with notes as to what needed what, with “sign here” post-its and post-its showing which needed notarization and which needed the bank’s seal. They called from the bank, saying they didn’t know what they needed to have done. I had gone over all of it with Mom, and everything was marked with post-its and notes. And they were confused. The bank rep was not helpful either, arguing with them over what had to be done, confusing them more. Upsetting them. They came home without getting anything done. I have to go back with them tomorrow.

I chase the lawyer, who isn’t terribly responsive most of the time. I chase the insurance agent. I chase the investment advisor. I chase the doctors, I make–and cancel–appointments. I keep the calendar. I watch the mail and the email. I make and print the pill schedules. I schedule and oversee the cleaning crew. Hub and I even buy groceries. A lot of these things are even more stressful for me because I don’t like to do them. I don’t like making phone calls and asking questions. I don’t like talking to people that I don’t really know. I don’t like calling doctors’ offices. I don’t like taking responsibility for things that are uncomfortable or outside my bailiwick.

I know I’m not irreplaceable. I know someone else could help them. But right now, there’s no one else to do all these things but me. And these things need to be done sooner rather than later. Sooner, before Mom gets sick again and can’t…do things.

I do the things that need to be done. But underneath it all, I feel like I’m bumbling my way through. I feel like I’m bluffing and guessing…and kind of hoping for the best. I’m pushing myself to do things I dislike–with much distress–because they have to be done and no one else is doing it.

I feel like a big, fat, fraud. I know it’s in my head, it’s only me and no one else expects me to do everything the way I’m doing it. And I’m not doing everything alone. My brothers are doing the things I’m asking them to do. But I’m still coordinating it all. I’m asking them to do things. I’m making sure they’re getting done. I’m still at the center of things getting done. And I’m not good at doing that AND I don’t like to have to do it…so it’s another case of feeling like I am a fraud.

It’s difficult to be stepping in on my parents’ lives like this. Things that in the past they would have done on their own without question, they can no longer handle them. I’m the youngest of my siblings, so it’s strange for me to to feel like I’m the responsible one among my parents AND my siblings. This is a tough road to be on. I hope I can continue to do what needs to be done and not beat myself up too much over the way I’m doing it.

 

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And so I fly… (part 1)

Spoiler alert: I made it home alive (and so did my husband).

Yeah, so the trip is over and I survived the flights both going and coming back. It was not fun either time and I hope to not fly again. Ever.

Our round trip was Sunday. On Friday night I started getting nervous. More about whether I was going to forget something or get to security and have to throw something away. But behind that, I was starting to get nervous about the flight itself. Hub isn’t a good flier either, so he was starting to get nervous, too. In some ways, that made me feel better because he doesn’t have anxiety and yet he was getting worried about the flight. Anyway, we left for the airport and parked our car in the daily lot, then grabbed the shuttle to the airport. We found the security line, which ended up taking almost an hour to get through. It was crazy ridiculous. I did what I was supposed to, including putting my liquids (mostly makeup) into a clear baggie and on the conveyor belt outside of my small bag. But guess what? After going through the xray doohickey, they stopped me and a female TSA agent said she was going to have to pat me down around my waist and my ankles. I actually thought nothing of it at the time, just let her do her thing, then grabbed my stuff and my shoes and went to where Hub was putting his shoes back on. We hurried along to find our gate, which seemed to be the last gate on that concourse, of course. Once we got there, we found seats and tried to stay occupied. We had about 45 minutes before boarding. I kept asking Hub if we needed to be in line for something because people kept lining up, but he said they were getting their seat assignments, which I had already done online when I booked the tickets. Also, I had checked in online (for both flights) the day before so it would save us some time and money.

They finally started boarding the flight. We were almost in the last group to board because our seats were in the back of the plane. I haven’t been on a plane in 17 years, so I forgot how small the aisles and seats are. And of course, I’ve got nicely padded hips…and our seats were in the back, so I had to pass alongside all the passengers already boarded. That kinda sucked. When we got to our seats, we found the person in the window seat was already there. Thank goodness he was a small guy, so I didn’t feel like I was smushed in between him and Hub, who is a big guy. We put up the arm rest between Hub and me, then I went to find my crochet in my bag. But I realized REALLY quickly that there was absolutely no elbow room to crochet. Ugh. I was really counting on that as part of my relaxation technique. So I swapped it for a book, then plugged in the headphones for my iPod and put the earphones over my ears. Were you aware that United uses their headrest tvs to show the safety video? It’s like a commercial and they tried to make it entertaining. Hub and I just rolled our eyes through the whole thing.

Lucky me, the little guy at the window seat kept his window shade open. So I pretty much had to crank my head toward Hub the whole flight. I clutched onto Hub as we took off, wrapping my arms around his arm so that I was pretty much attached to him. I did that almost every time I felt the plane bank, or there was turbulence, or we sped up or slowed down. I felt every single shift in the plane. Every single shift. I am so hyperaware of movement because of my vertigo and imbalance that I knew when the plane climbed higher or descended even a little. I tried to think of turbulence as pot holes, though that didn’t help very much (we had a good amount of turbulence as we ascended, then more during the length of the flight). I cranked my music and tried to sing along in my head. I tried to read but the book was terrible and I couldn’t concentrate. The woman in front of me put her seat back–of course–so I put my table tray down and just rested my head in my hand and my forehead against the back of her headrest (against the tv screen, technically). I had the little air blower from the ceiling on high, so that blew down the back of my neck and kept me relatively cool. I swayed my head to the music, tapped my fingers, and intermittently clutched at Hub as we flew. With the time zone change, I was having trouble tracking how long until we were supposed to land. At one point I was all happy because I thought we were going to start descending any minute, only to realize we had almost forty five minutes left. That was just less than half the flight. UGH. So back to the music I went, swaying and singing silently.

The pilot announced we were going to start descent, so of course I plastered myself to Hub, even though we still had twenty minutes before landing. I closed my eyes and just tried to ignore everything except the music I was blasting in my ears. The landing was hard and fast, and it felt like it took forever to slow down and stop. Everything was so loud…louder than I remembered from all those years ago. It took forever to get off the plane, because as I mentioned we were in the very back, just four rows from the bathrooms. It was interesting to watch the debarking process, because people were really patient and allowed other passengers to get off in order. All except ONE GUY who was sitting behind us who had jumped up as soon as he could, and instead of letting us out like he should, he pushed his way right up along our seats so Hub and I (and our seatmate) couldn’t get out in order like everyone else. SO RUDE, dude! I mean, really? How much faster were you going to get out by being an asshole?

Have you ever flown into O’Hare in Chicago? That mo’fo is HUGE. Walking to find the baggage area to get outside for pickup took forever. We used the moving sidewalks, too, but I was so tense on the plane and so squished into the seats that I was exhausted and in pain. It was kind of slow-going. But we had landed 30 minutes early (YES!) in comparison to the schedule, so we had some extra time to get outside. One of my brothers picked us up (along with some relatives coming in at the same time but via a different airline) and we were off to the hotel to meet my parents and change our clothes for the wedding.

Our flight out was an hour and forty minutes. The wedding itself, specifically, was thirty minutes long. Then we sat for ninety minutes in the reception room, as appetizers were circulated and the open bar, well, opened. I hadn’t eaten before flying (it was too early) and after we landed we went to the hotel. I had packed a tiny bag of gluten free cheese crackers, which I inhaled at the hotel (along with about six ounces of apple juice), but that was all I’d eaten all day. Unfortunately, every single appetizer was either breaded and fried, or had some sort of bread base (egg rolls, spanicopita, bruscetta), so I had nothing to eat again for those ninety minutes. I had two Shirley Temples and some water…and a few Hershey’s kisses that were on the table. That sucked. I was so hungry and I was getting a bad headache. Then the soup came out…but I can’t eat soup because it’s usually thickened with flour. But the waitress said they had some fruit, which she brought out for me and a few other people there who had allergies. That was some awesomely tasty fruit, ya’ll. 🙂 Then they served salad, which was good enough.

Luckily, my brother (it was my niece’s wedding) had arranged for a gluten free meal for me, which turned out to be pretty tasty. I was impressed because normally “gluten free” means plain and dry. But it was pretty okay, including a nice big baked potato, which I scarfed down like I was starving. They ended up bringing out chocolate mousse next, but I was too worried about being sick on the flight home that I didn’t eat it. Before we knew it, Hub and I were retrieving our bags from the car and changing back into our travel clothes in order to leave for the airport to fly home. When we went in to hurry around and say good bye, they were just serving the wedding cake (which I couldn’t eat anyway) along with what looked like ice cream or custard or something, and maybe some other small desserts. I’m not sure because we were already a few minutes behind schedule and it was more important to me to say good bye to my family than to see what we were missing dessert-wise. Then we were gone, on the road to heading home.

 

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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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