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Category Archives: friends

Living in it

This morning I had the opportunity to talk to Mom’s oncologist on the telephone. Technically speaking, the phone rang at about 8:30am and when I saw the caller ID I had a moment of panic. What was wrong? What had happened?

Then I remembered that there was really nothing left for me to worry about with her doctor.

The doctor had called to pass along his condolences. He’d been out of the country during Mom’s final crisis and death. He called to talk to me about what had happened with her final days, at the hospital, and then at home. I would guess some of this information would help him build his experience with this type of cancer–which is still pretty rare in the grand scheme of things–and some of it was closure for him. We’ve known him for almost two years, and I really do feel he had compassion for our situation all the way through. On the phone he said pretty bluntly that he wished this had never happened to Mom, that we’d never met, that he could turn back time and change things for us. I thanked him for the thought. Then I fought back tears as I told him how much my mother liked him, how much I like him, how appreciative I was that he fought so hard for Mom. I thanked him for putting up with my brother–who questioned him at every turn and threw tons of trials and homeopathy and other things at him–when he really didn’t have to. He told me it was part of his job, but I disagreed with him and I told him as much. Not every doctor could have–or would have–put up with my brother’s tactics or attacks. My mother’s doctor did so with aplomb, and with great understanding for what my brother was dealing with. I thanked the doctor for taking such good care of Mom, and for giving us two years to be with her. It certainly wasn’t a given considering Mom’s aggressive cancer.

When I hung up the phone, the tears were stuck in my throat. Later, I spoke to my father who had called Social Security to see what he had to do in regards to my mother’s passing. He told me how hard it was to have the conversation, and I told him I understood how he was feeling. It’s hard to talk about her. It’s hard to talk about what happened. It’s hard to talk about our lives without her.

Hub’s friend was coming over tonight to hang out. He’s been Hub’s friend for a lot of years. He’s helped us move a couple of times (and we’ve helped he and his wife move a bunch of times), and he’s even helped us with things at my parents’ house over the years. He’s a good friend to Hub, and vice versa. He and his wife know my parents pretty well. I couldn’t even stay downstairs to say hello, I just wanted to come upstairs and hide. I didn’t want to have to hear another condolence. Another “I’m so sorry”. It isn’t their fault…what else do you say? What else do I say other than “thank you.” It’s just another chink in the armor every time someone approaches with that face or that voice or that head tilt that tells you what is coming. Sympathy, empathy, kind words, compassion. I know why and I understand, but I just couldn’t take it again today.

I want to hide from everyone who knows me because I don’t want to hear the sympathy. I don’t want to hear the pity. I don’t want to be reminded every time I talk to them that my mother is gone. How are you? How’s Dad doing? One day at a time.

It fucking hurts, every minute of every hour of every day. And it isn’t anyone else’s fault. I just want to live in it by myself. I don’t want to tell everyone how I’m doing or how I’m making it through.

Is this the anger? I thought the anger would be at my mother for being sick, or for dying, or for leaving. Instead I just feel ANGRY. And I just want to be alone. I know there’s no wrong way to grieve, so I’m living in it and living with it. And it so sucks.

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Taking control

I’ve talked about control before, and how I need to learn to let it go. Control is an illusion, yes?

But I guess this is a different type of control.

Mom had her infusion on the 20th, and since that point has had some up and down days. This past couple of days she’s been feeling okay, but kind of limiting her activities so as not to overdo it on any one day. And of course, with the chemo, comes the hair loss. But for mom, who is 10 days out from her first infusion, the hair loss hasn’t started yet. But her appointment for her wig fitting–sans hair–is in two days. Her hair isn’t even “shedding” yet, but we’re keeping the appointment.

Why?

Mom has plans over the 4th of July weekend, the wig dresser is unavailable after Wednesday of this week, and so we are kind of running out of options. When we talked about this last night, the choices included postponing the wig appointment until next week–which is already busy with three appointments–or going through with the appointment even though her hair is still on her head. I reminded Mom that she IS going to lose her hair, it’s not a question of if but when. And since she has plans for the weekend and wants to not have to worry about “shedding” and or losing her hair the day before (or day of) her plans, why not take control? Why not choose WHEN she loses her hair? Why not tell the stupid chemo FUCK YOU (which I did not say to my mother, obv) and decide when her hair goes. She can’t control the IF, but she can control the WHEN.

Wednesday’s appointment remains, and we’re making it a fun affair by going to lunch before with her long-time friend. And then all of us will tromp to the wig lady’s shop and we’ll laugh (and maybe cry) while Mom gets her head shaved. Then we’ll make her try on ridiculous wigs and take pictures of her, which we won’t share with anyone. Then we’ll get her new wig shaped and styled and we’ll leave. And Mom will be able to take a couple of days to get used to wearing the wig before she goes out over the weekend. And it’ll be done and we’ll take the next step, whatever it is.

Control. In a good way. Who knew?

 

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A stitch in time

My mom crochets. My grandmother used to crochet (and knit). I, in fact, still have lots of Barbie doll clothing that my grandmother knitted and crocheted for me. I have other pieces that my mother sewed for me. They are in a weird, flowered suitcase straight out of the 70s. The suitcase used to live in my guest room so that I could make sure nothing ever happened to it. Here in this house, the suitcase is in the basement, but on the top of a bookshelf where it can’t be touched by any flood water (our old house had a basement flood once). Those items are very important to me, even though they haven’t been used since my childhood.

My grandmother tried to teach me to crochet. The best I ever did was just as square, because I would get lost or frustrated and give up. I never learned to knit. My grandmother figured if I couldn’t crochet, knitting was out of the question. Years and years later, I discovered a knitting board, which I purchased and became obsessed with for a brief period of time. I made hats and scarves for lots of people, some with fancy fun yarn, some with some cool patterns. Then I started having more muscle issues, and I realized that using the knitting board was bad for my posture the way I was using it. I had to look down, it hurt my neck. I had to hunch over my lap, it hurt my shoulders and back. And the constant stress on my fingers and hands made them hurt. I ended up giving it up because although it was relaxing to do, it made me hurt a lot. I have two different size knitting boards, one is about 18″ wide, the other is 28″ wide. Both of them have half-started projects on them that have been sitting idle for years. I miss it, but every time I try to pick it up, I end up in pain again and I put it away. I took the smaller knitting board with me to the hospital during my mother’s surgery, but I literally used it for less than half an hour total, and even then it was in fits and spurts just to keep my hands busy. Then I put it away again.

My mom was crocheting lots of premie hats with leftover yarn she had. She made them and donated them repeatedly to different hospitals. She had to have made more than a hundred of them over a couple of years. Then she stopped, I think because she was busy with other things and I kind of think her hands started getting somewhat arthritic. But I know she misses it, and I know it helps her relax. And I know she has more time on her hands these days than she used to. I encouraged her to pick it up again and do something small. When we went to her wig appointment, they indicated that a lot of the chemo caps they have are donated because they have clients who can’t afford hats, so they offer the donated hats to those clients. And there was conversation about Mom’s crocheting and the premie hats, and how maybe she should do some chemo caps.

The opportunity to do something, to take herself outside of her own head was good. Mom went to the internet to look for patterns and realized that you basically can do any hat. So she worked some stitches and made a couple of hats. And then I invited her to go to the yarn shop that is about ten minutes away. So off we went on Saturday to shop for some fun yarn. It was so lovely to be in the moment with her, to touch the yarns and discuss the colors. To laugh and talk about what would work and what was pretty and what was soft. We bought four different skeins of yarn, two for her and two for me. And today, I went over to her house and sat at her kitchen table and she tried to teach me to crochet again.

And while she worked on one hat and I worked on the mess I have that may or may not ever be a hat, we talked. We talked about nothing and lots of things. My niece’s upcoming wedding, my brother and his wife, my other brother, my parents’ basement remodel-in-progress. The dogs. The birds. The yard. Her appointments. A drug trial. The yarn. My horrible crochet stitches. My grandmother. My husband. Her husband. Food. Drinks. Stuff. There was no music, no television, only the ticking of the clock over her doorway and our voices (and occasionally my cursing as I struggled with the stitches and her laughter at me).

Time. I know I want more of it. Don’t we always? But at least in these moments, I have them. And I will always have the memory of them, knowing I spent my time in the right way. Not worrying about her treatment or what might be, but being there with her and enjoying the time spent together.

I’m grateful and thankful for this time. And for the friendship I have with my mom.

PS: It will never be a hat. But it makes a lovely doily…if I ever needed one of those (and in this particular color palette). ‘Tis a fine doily, English, but ’tis no hat.

See all the purdy ruffles?

See all the purdy ruffles?

(thanks to Hub for his lovely modeling job)

(thanks to Hub for his lovely modeling job)

 

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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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Faith in faith?

I go to physical therapy twice a week. The woman, H, who runs the office and sits at the front desk is amaze-balls. Not only is she really good at her job, but she’s nice to everyone and has the patience of a saint when dealing with the office’s clients. I’ve been going to PT for over 10 months now, focusing on different body parts during that time. Over the months, H and I have talked a lot. I get to the office early for every appointment, and we talk the entire time I’m there until E comes to get me for my PT.

H and I have a lot in common…mostly personal characteristics. We laugh about it, because otherwise we are very different. But yesterday, while H was talking about some issues going on in her life, we started talking about something very profound–to me at least.

Faith.

And I’m not talking about religion. I’m talking about faith. Yes, I have faith in a higher power. But as H and I discussed, sometimes that means having faith in yourself as well as the people around you.

There are people out there who say I have faith that God will take care of me, and then they sit and do nothing. They sit and wait for things to happen to them. They sit and wait for God to do something. They don’t think about the fact that they need to have faith in their own abilities to get things done. To take care of themselves and those they love. And the community around them.

There’s nothing wrong with believing and having faith in a higher power–whomever you choose to believe in–but don’t sit and wait. Have faith that God has given you the ability to take care. To do the things that need to be done to care for yourself and those you love. Have faith in yourself, that you know how to handle the things that happen to you and yours. Have faith in those around you–family and friends and community–that they will be there if you need them. That you can ask for help when needed, and that you will be able to accept help when it is offered.

After H and I high-fived the common thoughts, I went on through to PT and did what I had to do. And I realized along the way that I had faith that E knows what she is doing in her attempts to help me. I had to have faith that she is doing the right things for me, and that in the end it is helpful to me.

Don’t give up your faith in a higher power, but don’t forget to have faith in yourself. Don’t forget to get up and DO for yourself and your inner circle. Be empowered with the faith you have in yourself to take care of whatever needs to be taken care of.

That’s not to say you shouldn’t be a little pissed when bad things happen. But be pissed, then handle your business. Cry, then handle your business. Sleep on it, then handle your business. And use your resources, whether it be friends, family, religious affiliation, colleagues, community. Those people are all in your life for a reason. Give back when you can, and accept help when you need it.

After having this conversation with H, I am going to try to remember to have faith in myself and those around me, as well as in the higher power I believe in.

Happy holidays everyone…to those who have already celebrated, and to those with holidays still to come.

 
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Posted by on December 19, 2013 in anxiety, faith, friends

 

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Housework and pain

My mother’s friend, M, is coming for dinner tomorrow night. She and my mother worked together and have been friends for over 16 years, so M is pretty much considered family at this point. We tried to get her to come for Thanksgiving, but she was with her daughter and family, so we forgave her. But since she hasn’t been to see our “new” houses since we moved in two years ago, we finally convinced her to come. She lives about an hour away, but really between her new retirement and my aunt’s passing and my mom retiring and me being sick…things just got away from all of us.

Anyway, I’m looking forward to seeing M because I haven’t actually seen her in two years. But the drawback is, since she hasn’t seen our house, I desperately wanted to clean up before she came. Unfortunately, me and housework don’t get along so good. Anything requiring bending and scrubbing requires more than my body can handle. The last time we had visitors to see the house–my father-in-law and his wife–I was on the cusp of my “Prilosec fever” and just days away from the infamous ER visit and subsequent major panic attack. I was so sick that I couldn’t clean, so we decided to have a cleaning company come in. I searched for and found a reputable company on Angie’s List who had a great coupon, and had them come out to clean. We had them concentrate on bathrooms and kitchen, all of which required tile scrubbing and baseboard cleaning. My mom came over to supervise, but in the end the cleaners did a crappy job. I regret and resent having spent money on that when I could have done equally as lousy a job and not paid for it (in money, anyway).

Now I know that the plan for M to come to dinner has been on the schedule for a couple of weeks. But I didn’t want to do a “deep” clean too early and have stuff get dirty again. I mean, we do have two big, long-haired dogs (one of which drools), a yard that is more leaves and dirt than grass, and my husband. 🙂 And unbeknownst to me, Hub made plans for today, the day I had expected to spend cleaning. So while he did his thing, I tried to clean.

I did a few things around the house when I could in the morning, around watching the dogs, and then when he took over dog-duty with his friends, I went to clean our master bathroom and shower. Our shower is large, tiled floor and walls, with two sides made of glass/glass doors. And the truth is, I don’t clean it that much, because it IS a pain in the ass. I do my best to keep it clean by wiping down after showers, but Hub doesn’t. And sometimes things just need a deep clean to really get it looking good. And so that’s what I tried to do. And I spent three hours doing it, because I started by trying to clean it with the easiest tricks…which didn’t work. So I ended up scrubbing and scrubbing by hand. And by the time Hub came to check on me, I was exhausted, in pain, and crying. I’m still not happy with how the shower looks, and I had to leave the sink and toilet for Hub to do tomorrow, and still I’m in so much pain I can’t even explain it. My knees are throbbing, my neck is killing me, my arms are sore, my shoulders are aching, my feet hurt, and my back hurts. I finished doing what I could, cleaned up the mess I made by attempting to clean, and then I stripped and laid down in bed. On my side, curled in a ball, in the dark (because by then the sun had set)…and I cried. I hurt so much and I hate it. I hate that my body can’t do things that need to be done. I hate that doing this one thing has wiped me out for everything else that needed to be done. Hub has already vacuumed and tomorrow he’s doing the rest of the bathrooms and mopping the kitchen & breakfast room floor. I just have to give up on the rest of it. I had hoped to bathe Le Moo because she stinks and M hasn’t met her, either. But there’s no way in hell, considering how hard it is on my body to bathe LM.

I hate being embarrassed over the messiness in my house, because I feel that it reflects on me as a person, which I know is incredibly stupid. Truthfully, M is a wonderful woman and I know she won’t judge me for how messy my house is. It’s pride that eggs me on to clean for people I care about. Even though I know I can’t clean everything, I wish I could get the majority of the house cleaned and picked up. But it isn’t going to happen. I’m going to have trouble sleeping tonight because of the pain I’m in as it is. I’ve already pushed myself too far. I don’t know why I do that sometimes. Sometimes I’m good and know my limits, other times I push too hard even though I know better.

And I’m still resentful of my body and how it betrays me.

 
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Posted by on December 4, 2013 in anxiety, family, friends, pain

 

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This is post number 101

This is my 101st post (technically it’s #102 because I just posted a link after having written this post). I had no idea how many I’d written, only that I was trying to keep ahead of the schedule. For a while I had five and six posts scheduled out, but now it’s been shrinking down to only 1 or 2 posts. Then last week I didn’t have a post ready on time, and I missed what I considered was a scheduled day. I’ve managed to make that post and now 100 is sitting on the schedule, with another one in draft that I can’t seem to concentrate on.

I thought maybe I would talk about my husband or my dogs, but I’m still a bit wary of giving out too much personal information. That seems like an incredibly stupid statement to make considering how much personal information I’ve shared about my life and mental state…but that is exactly why I am hesitant to share too much identifying information. As it is, I feel like I can be incredibly honest about everything happening to me personally because ya’ll have no idea who I am. As much as I like to have pictures to look at on other people’s blogs, I’ve yet to post a picture on mine…that fear of being identifiable. It sits on my shoulder and squawks in my ear like that big-ass bird that sits outside and taunts Le Moo almost every day. I want to be able to share things without worrying about people being able to identify me. But I struggle with the fact that I’m not ashamed of the psychological issues I’m dealing with. And that is true, I’m not ashamed… I think more of my concern is about giving out too much personal information on the internet. If I were to identify myself in some specific way, I feel like I’d be worried about identity theft, or some other issues.

For example, when I was younger, I had a friend (oooh, really? a whole friend?) that I was really close with. At some point she decided she didn’t like the person I was dating and she got really pissed when I wouldn’t break up with him. The friend knew a lot about me–a shit ton as I like to say–and she used it against me. Among other things, she broke into my house and stole things that were extremely important to me. I felt traumatized by the break-in as I was living alone at the time…and I felt betrayed by someone I thought I cared about. At another point, my brother was married and had children, then got divorced…his ex-wife tracked me down (not hard to do, I was listed in the phone book!) and was threatening me. She also tried to steal my identity to use for her own gains. Because of those two things, I became unlisted in the phone book (and online) and have been ever since, with every move to a new town, city, house, etc. I didn’t want to be vulnerable to either of those people ever again. If I were to identify myself here, they could potentially find me and try to use information against me. I’m not sure how, but I’m not as evil or crafty as they are. I would NEVER have considered breaking into my best friend’s house and ransacking their personal space. I would never steal things from someone who meant so much to me, even if I was angry with them. And I would never consider using a sibling to try to put black marks on an ex’s reputation in order to turn my children against him. I would never threaten a sibling as a way of getting back at an ex. So I have no idea what those kind of people could do with the information I put on this blog.

I know some blogs I follow have lots of identifying pictures and information. I know some of the blogs I follow do not. Clearly I am still struggling in the middle with that. I’d love to share pictures of Le Moo and Butthead. I’d love to share pictures of the property we live on, the deer and the woodchuck and the fox…the beautiful trees, the river that runs through our back yard when it rains. But at this point, I just can’t.

I share so much of who I really am, I am not ready to share who I am.

 

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