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Monthly Archives: May 2014

Party on, Wayne

Tonight Hub and I are going to a party. I do not like parties. I’m a terrible introvert and incredibly shy. I also get embarrassed easily. I will probably spend the evening with my face in flames…partly from discomfort and embarrassment and partly because I overheat incredibly easily. Our house is like a freezer pretty much all year round, and no one else ever keeps their place cold enough.

Why, you ask, am I going to the party? No real choice, actually. Hub is working with a charity and we’re going to the party to try to raise funds for the charity. I’ve been helping him with some of the fundraising stuff (ideas and setup), but heaven help me if I have to TALK to anyone about the charity or the fundraising…or ask for money. I’m terrible at all of it. It isn’t that I get anxious about going to the party, I just don’t like parties. I don’t like mingling, I don’t like meeting new people, I don’t like making small-talk. On top of everything else, the party is during dinner-time (also, happy hour) at a restaurant. I have no idea if there will be any food I can eat safely…and since I don’t drink, the happy hour means pretty much nothing to me.

I’m going to take my new camera and take pictures. The person organizing the event asked people to take pictures to share afterward and I figured it’d be a good way for me to practice my camera skills. Also, if I’m taking pictures maybe no one will talk to me. AND taking pictures will give me something to do and something to hold in my hands.

Really, I have nothing else to talk about right now. Well, I probably do, but for some reason I don’t feel motivated to write.

 

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What does it say?

What does it say about me? Over the past week, two times I have warned my husband, “Don’t be nice to me.”

At one point we were talking again about my brother and father, and I was telling Hub that I was trying to be supportive to my mom in the ways that I could be, and he hugged me and told me I was a good daughter. And I felt the tears rush into my eyes, and I said, “Don’t be nice to me.” Because I know when I’m emotional, if someone is nice to me it makes me even more emotional and I wanted to remain in control at that point. Another time, it was again about my mom and I went into Hub’s arms for support, and he said something nice to me and I told him not to. For the same reason.

I have this issue with a couple of people. My mom, two of my brothers (one more than the other can just look at me when emotions are high and I’ll burst into tears), Hub… If I’m in an emotional state and they say nice things, it will make me burst into tears. I guess it’s a safety thing (as in I feel safe with them) or maybe it’s leftover from my childhood from something, I’m not sure. But really, I’ve made that statement (Don’t be nice to me) many times over the years I’ve been an adult. Does it mean anything? Does it mean something different when I say it to Hub?

Why does it trigger me to tears? Why can’t I handle someone being nice to me at a time when that’s absolutely appropriate? Am I just afraid of emotional overload? Or am I feeling not worthy of someone being nice to me? Or am I unable to accept kindness?

Or am I over-analyzing?

I once asked T why I retreat when most people look to others for support. Even when I’m sick, I really want to be left alone. When I’ve gotten bad news, I will put on a mask until I’m alone and I can break down. Later, I will go and talk about whatever it is with Hub or my mom or my best friend…in a manner that is more down-to-earth. She told me that she felt it was healthy to do what I am doing…with respect to me individually. That apparently I understood what I needed to soothe myself and that I should allow myself to do things that way. Am I doing the same thing with the kindness thing?

 

 

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Finding happy

Had a session with T last week. Of course we talked about my mom and her cancer situation, as well as the situation with my dad and brother. And gently, but firmly, T reminded me that I am not my mother’s sentry. I want to protect her, but really she knows how to protect herself. I have to take a step back and offer her my support without trying to take over. I had already started doing that before my session with T, but she did reinforce that for me.

So among some other conversation, T and I talked about my relationship with food. I told her how I feel traumatized every time I take the digestive enzymes my nutritionist recommended for my heartburn and stomach issues. The enzymes seem to work (this past week not so much, but prior they were working REALLY well), but they remind me so much of all the “herbal” pills I had tried to buy and take growing up to lose weight. There’s a smell to them, and the look of them is not much better. And I can’t help but smell them every time I open the bottle. She suggested I put a cinnamon stick in the bottle and/or to inhale before I open the bottle so I can’t smell them. We talked about being mindful with my food, but truthfully–as I told her–I either think about it too much, or I think about thinking about it. Which sounds weird. So I’m not sure what direction to go, because I don’t want to obsess over food, but I don’t want to eat unmindfully. One of the problems I have is that I have to think about food constantly because of my gluten/wheat issues. I can’t go out anywhere without spending time thinking about where we’re going and will there be food for me and will I get sick afterward and will it be worth it. I can’t go to other people’s houses without thinking about it, or even randomly pick up a chocolate bar in the store. I can’t even randomly pick something out of my pantry or refrigerator without thinking about the ingredients because Hub is not gluten/wheat free. So I have to think about what I eat all the time.

T asked me to think back to a time when I felt like I wasn’t worrying about my weight or my body image. And there was a time, shortly after we moved into our house from the townhouse we first lived in together. I was deep into my writing and felt that I was a part of a larger group…and that I was touching people’s lives. So she asked me how I could get back there, but I told her I wasn’t likely to ever be in “that place” again, because it was years before I realized I had food sensitivities. Back then we didn’t think about or worry about gluten/wheat. I ate what I wanted to, when I wanted to, and in the amount I wanted to. Now I can’t do that with pretty much anything. I eat too much cheese, I get sick. I eat split pea soup, I get a stomach ache. I eat GF pretzels, it makes my stomach hurt. My favorite cheddar cheese potato chips? They leave sores on the inside of my mouth. Pineapple? Burns my lips. Fritos (which I love but actually can’t eat at all anymore) makes my lips burn, too. Spinach upsets my stomach. Chocolate upsets my heartburn. Tomato sauce upsets my heartburn. Popcorn gets stuck in my teeth and gives me toothaches (stupid delicious movie theater popcorn that I haven’t had in about ten years.) I avoid sugar substitutes, so a lot of foods are off limits because I can’t take the sugar substitutes in them. I literally never pick anything up at the grocery store without reading the ingredients and searching for items on my no-no list. I’ll never be able to just eat what I want to eat. I’ll never not have to think about it. And it sucks, because it makes food an obsession of sorts for me, which is one of the last things I need.

And I miss writing. I know that I’m writing here, and I hope that I’m touching people’s lives…but I miss the writing that I loved so much. I miss being buried in those words, in my characters, in the worlds that I created. But I can’t seem to find my way back there. I can’t seem to be in that place anymore. And that hurts me, too, because that was a happy, comforting place to be. It made me feel like I was doing something good, offering something to people, and I felt fulfilled. I want that again, too.

 

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These days I live

I’ve been writing a lot about how I am trying to change how I live on a daily basis. That I am try to be more in the moment, live life one day at a time, and enjoy the moments I am given. And I do feel like I have been able to accomplish this pretty often.

But there are days where I feel the pain, physically and emotionally, and I fall backward. I feel like I fall into a hole, where I am surrounded my dirt and muck and the earth is clammy and cold. My body hurts and every ache is amplified. I feel the pop in my knee with every tiny bend. My back burns no matter how I move…or don’t move. The coolness of the earth around me is so damp that it seems to seep into my bones. I try to climb out of the hole even though I know better. Dirt tumbles around me, getting stuck under my fingernails and covering my feet. My hands hurt from digging, my feet are cramping from being clenched to keep me upright on the soft earth below. My knees ache from standing there so long. It all hurts, and I can’t see any light above me. I can’t see a way up or out.

I want to cry. Fear and loss tunnel around in my head as I think about my mother being sick. I can’t get rid of the itch to do research on the internet. It is a constant barrage of questions going through my head, pushing me to research to find the answers. And I feel smothered by the feeling that I am not doing enough because I’m not doing the research I should be doing. It’s heavy, this oppressive feeling, pushing me further into the hole, weighing me down so that I cannot even stand. It puts more pressure on my knees, my feet, my joints. My shoulders hurt, and my arms feel like I’ve got twenty pound dumbbells clutched in each hand.

It’s not all easy and happy. My mind is not always in a good place. My body is rarely in a good place. Some days just suck.

 

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How we deal

We are all different. We all deal differently with things. Some of us learn new ways to deal, some can’t ever change that part of themselves.

My way of dealing used to be researching everything until I was cross-eyed, sick to my stomach, and anxiety to the point that I couldn’t breathe right. I’d read everything I could on whatever the subject was (generally relating to my health, or someone else’s health), even when one thing contradicted another. I’d come away with probably less knowledge or understanding than I’d started with, and I’d be filled with stress and anxiety. And then when I was done trying to figure out how to breathe again, I’d dive right back in and start researching again. I thought I was doing something and that I was helping myself. I thought I was educating myself and learning how to fix what was wrong with me…whatever that might have been at the time. It was all a lie. Although I might have learned a few things, most of it just made me worry more and I ended up without any resolutions to anything I was researching.

I’m not researching anything anymore. Not for me, not for my mother, not for anyone. I don’t want to live that way anymore.

My brother started researching things as soon as he heard about my mother’s surgery. He’s tenacious and smart, and he thinks he knows better. Than pretty much everyone. Maybe even the doctors. He’s aggressive and angry, all of which comes from his abject fear. He needs to feel in control…I understand his quest, but it’s difficult for me to deal with. My mother’s pathology came back before she even left the hospital. Other than the original findings from the original uterus scraping/biopsy, they found nothing else in the organs they removed during her hysterectomy. But one lymph node had “microscopic” cancer cells. Her uterine cancer was diagnosed as stage 3, with a cancer that is generally aggressive. I want to say the doctors seem positive about her prognosis, but honestly I did not get the chance to ask because the last time I saw him, it was so brief and we were almost out the door when he showed up to see my mother. But his recommendation is for chemotherapy…a full course. He has already set her up for a second opinion with a colleague (my father is sure the colleague is just a “yes” man for the original surgeon and will rubber stamp his recommendation) in about ten days. She has chosen to focus on her recovery from the surgery, my brother has decided to spend the next ten days on the internet, reading and questioning everything…including the doctors. He sent me an email this morning (and to my father) with the subject line “opinion.” I skimmed over the first line of the email, then directed Hub to respond to the email, requesting that my brother not send me anything that has to do with his internet research. Then I asked Hub to delete all the emails to and from that might include anything that the original email said. Hub did it, and I went on with my day (after crying for a few minutes because I felt like I wasn’t do anything to help my mother because I wasn’t participating in the researching).

I went over to see my mother after lunch today, bringing over some groceries that Hub and I picked up this morning for them. Almost immediate I was attacked by my father. My father researches, but he only reads what he wants to read, and only understands what he wants to understand. He only hears what he wants to hear, and is just as likely to misinterpret and/or misremember things. He questions everything, but from a place of conspiracy and from the expectation of the worst. He thinks every medication out there is only to make pharmaceutical companies bigger and richer. He is sure everything that happens is going to be the worst case scenario. And he’s scared shitless. And driving my mother crazy. She doesn’t want to discuss this every day, or spend the next ten days until her appointment worrying about it. She wants to recover, she wants to live, she wants to do normal things. He wants to talk to her and spend his days researching and questioning and thinking and worrying and looking for the worst that could be. He wants to question the doctors and tell her everything he thinks they did wrong. He wants to tell her that she’s not worrying enough, or thinking enough, or planning enough. She wants to find faith and hope in G-d and in the future…in the daily workings of her life.

I told my father that nothing was certain. That the doctors wouldn’t be able to give him any certainty, even if he would believe them if they did (which he wouldn’t). They could give him probabilities and percentages, but even those are guesses. Because every person is an individual, and everyone is going to react differently. The doctors can’t give him what he wants, which is for his wife not to have cancer. My father argued with me every time I opened my mouth. And with every statement or attack he made, I could see my mother sinking down in her chair. I finally told him to stop talking to mom about this stuff. I told him that he might need to deal with it this way, but she didn’t want to, and he was just making things worse for her. I told him to go talk to my brother and to my uncle, both of whom want to do research and talk endlessly about everything. But to leave me and Mom out of it. He stomped off, angrily, and went to talk to my brother on the phone.

I turned to my mother and told her that she needs to take care of herself and her headspace. That she wasn’t responsible for how my father feels or what he does, but that she IS responsible for how she feels and what she does. And if he continued to talk to her about this stuff, she needed to reiterate that she didn’t want to hear it and that he was upsetting her. I then offered to let her come stay with me for the ten days, which we both knew was just a joke. I don’t want him to bring her down. I want her to feel positive and up and enjoy each day she has. None of us has anything promised to us. If she doesn’t want to spend her days worrying and reading the internet, she shouldn’t have to.

I want to be able to spend time with my mother doing normal things. If it helps her to feel normal by talking about every day normal things, I’m good with that. If she wants to talk about health stuff, I’m good with that. But I’m not going to spend my time thinking and worrying and researching and making myself ill. I can’t do anything for her by doing that. I can do the most for her by being in the moment and helping with everyday things. And if necessary, reminding my father and brother to go talk in another room where we can’t hear them.

 

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Post-surgery update

Good news is that Mom made it through her surgery and is doing well. The surgery seemed to take forever and I think we were going a little crazy in the waiting room, but that’s all over now. When the surgeon finally came out to say everything went well, I listened and asked questions, then when he left I got teary-eyed. And my family (my aunt and uncle, anyway) got all nervous. I just told them I was relieved and that was how I responded, and that I was okay. I turned away and started making phone calls and sending emails. But jeez, why am I not allowed to have a response? Why am I not allowed to have emotions? I made my reports to family and friends, then went to find some lunch in the hospital cafeteria. Unfortunately, they had closed after breakfast to prepare for lunch and since I didn’t see a schedule, I bought some canned tuna salad and potato chips from the vending machine. By the time I had wolfed it down (I hadn’t eaten all morning and was up for 4am)–like ten minutes later–the cafeteria doors opened and people rushed in. But I didn’t want to eat anything else, so I went back to the waiting room to be with my family.

We finally got to see Mom in her room at about 1pm. It’s hard to see your mother lying in a hospital bed. She was clearly still coming out of the anesthesia, shaking and shivering, but she said she wasn’t in any pain, so that was good. My father did okay, but he couldn’t even concentrate enough to read–which is his default mode–or doze. He mostly sat and stared, or we chatted about nothing. Or he went outside and smoked his pipe.

So we hung out for a while with Mom to make sure she was okay. She was on a morphine drip and seemed drowsy and loopy. No surprise, right? I tried to keep talking to her so she didn’t have to talk too much (her throat was sore from the breathing tube and her mouth was dry), and so did my brother and SIL. Slowly, everyone left, but my oldest brother and I stayed so my dad could get some food since he hadn’t eaten since breakfast. When he came back, my brother and I left, hoping that Mom would sleep for a while. After an early dinner, Hub and I went back to the hospital to see Mom and give Dad another break. We stayed for about two hours or so…long enough to distract Mom (Hub is good at that) and let Dad relax for a while.

By the time we got home, I was WIPED. I pretty much stumbled in the house, let the dogs out, then went upstairs to shower. By the time Hub came upstairs at just after 10pm, I was in bed and almost couldn’t keep my eye open. Hub tells me that five minutes after the lights went off, I was asleep. I didn’t wake up once in the night, where normally I’d be up at least once or twice to pee…and more often to turn over in bed. It was tough for me physically all day because my back has been bothering me from some stuff in PT, but I was able to handle it. I’m still in pain today, but it’s still a point that I can handle…I hope I’m not making things worse for myself for the weekend, though, as I want to be able to help when Mom comes home from the hospital.

This morning my father called early to let me know the doctors had been in and were pleased with Mom’s progress. Since then I’ve talked to both of them and heard that she’s had breakfast AND already walked the whole corridor with a nurse. I told you my mother was a strong lady! I’ll be heading back down after lunch sometime to spend the afternoon with her and make sure my dad has time to relax and not be so on “duty” all the time.

I really didn’t feel too much anxiety yesterday. Really, when we were heading to the hospital at 5am in the dark, did I feel some anxiety creeping up. I’m not sure why it happened then, but I was able to deal with it and it went away pretty quickly. At the hospital in the waiting room, I stayed as busy as I could–talking, playing on the iPad, knitting–and didn’t have any major issues except when I heard them call my mother’s surgeon’s name on the intercom when I thought he was supposed to be IN surgery. That seemed weird, but I figured they didn’t realize he was in surgery and I went back to what I was doing. And once I saw my mom, I was more relieved that she made it through the surgery and anesthesia than anything else…so there was no anxiety around. Also, I was so zonked I don’t think I was feeling too much of anything last night.

I’ve got Cray-cray Lab here with me today, since there’s no one home to take care of her. She was with Hub yesterday while he worked from home and took care of all the dogs. Cray-cray has become pretty attached to Mom since she retired and I know she misses Mom. But I talk to her and pet her and make sure she gets good play time outside with Butthead. Right now she’s napping in the sun on one of the dog beds in our family room while I’m writing this blog. Butthead and Le Moo are keeping watching in our library where they can stare out the window to the street out front.

My thankful list overfloweth. Our family has been amazing. The doctors were great. Most of the nurses have been wonderful so far. An old, dear friend of mine texted me the morning of the surgery to tell me she was thinking of me and my mother. And she has repeatedly offered help and support for me, even though we only see each other like once or twice a year on average. My husband has been amazing to me, not even blinking when I asked him if he would drive me back to the hospital last night even though I’d barely been home an hour (and it meant postponing something he had already planned to do that evening). I can’t even list all the things he’s done and is doing for me during this time, just that I am very thankful for him. And I’m thankful for the time I’ve had with T, who has helped me to be in the place I am in now, able to be of support to my parents without the overwhelming anxiety pressing on me.

Thanks to all of you, too, for reading about all this.

 

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Surgery day–almost

By the time this is posted (and you have an opportunity to read it), surgery day will have come and gone for my mom. I will be heading to the hospital with them tomorrow morning at 5am, as she is first in line for surgery with her particular surgeons.

Over the past couple of days, I’m starting to see (or she’s starting to allow me to see) her fear. She isn’t sleeping well, and told me last night when she wakes up, she just gets up and goes to read a book until she is sleepy again. She says laying in bed gives her too much time to think and worry about the surgery. She is a strong woman, practical and pragmatic, filled with faith in G-d. That does not mean she is impenetrable. I saw a bit of this when she was working on her medical directives about two weeks ago. Where prior to this I think she would have made a certain decision, now her directive is different than I had anticipated. We are never so aware of our fragility and the fragility of life as when we are sick and faced with the possibility for a bad outcome (surgery, anesthesia, etc.)

I’m still trying to keep myself grounded, while at the same time preparing what I need to take with me for at least an entire day at the hospital. Like I said, we’ll be there very early, and the doctor said she might not be in her room (where we can finally see her post-surgery) until close to lunchtime. Of course, depending on what happens in surgery and how well she makes it in recovery. Since she has no past experience in the hospital, we have no idea how she will react to the anesthesia and/or any of the pain medications she’ll be on. And, of course, considering her age.

I’m so so so thankful for my husband, who is taking time off of work to make sure all our animals are taken care of while the rest of us are at the hospital. I am so so so thankful that he understands how important it is that I be with my dad while my mother is in surgery. I am thankful for my aunt and uncle, who are going to be with us during the surgery tomorrow, and be with us as we wait for Mom to make it through recovery. I am thankful for my brothers, who will be there in person and/or in spirit as they are able. I am thankful for all the people who are praying for and thinking of my mother as she goes through this. I am thankful for the experience of the surgeons performing the surgery, and for the nurses who will be attending her during and after the surgery. I am thankful for the people who run and take care of the hospital, so that it is there and operational when she needs it. I am thankful there is a higher power that my mother can feel connected to during this time, so that she feels that spirit and that support as she goes through this. I am thankful that she is not alone in this (and that *I* am not alone, as well).

I am thankful for my mind and my body and my spirit, all of which propel me forward every day, and allow me to be with my parents tomorrow (and after). I am even thankful for the aches and pains that I feel every day, because it reminds me that I am here, and that I am living. I am thankful for the fear and the helplessness that I am (and have been) feeling, because it reminds me how much I love the people in my life and how much I cherish the time I have with them.

 

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