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Tag Archives: time

Jet plane, day 1

We dropped Hub off this morning at 4:15am for his flight. After I got home and let the dogs out, I instant messaged with Hub until he boarded the plane at 5:45. By then I’d already fed the dogs and gotten back into bed. I dozed for a few hours, then got up and went about my day. For the most part I felt like Hub was at work and I allowed myself to just be that way. I’ve almost read two books and I pretty much had movies on the TV all day, although mostly they were movies I’d already seen. I had Mama Mia! on the TV maybe three times at random points through the movie, because I like singing those songs and they passed the time more easily. Hairspray was on at least once, too.

I’ve done okay for most of the day. Unfortunately, around 9:30pm tonight, Butthead freaked out and had her tail tucked under and was barking hysterically while backing her way into the bedroom where I was reading and watching TV. I went out into the hallway and checked all the rooms up here (she refused to follow me and instead ran down the stairs), but I have no idea what her major malfunction was. I took them out in the darkness, but luckily it was a little rainy, so both dogs ran out and peed and ran right back to the door to go in. So we kind of settled into the bedroom at that point and after some treats and wandering around, they both have settled in. I suspect they are also exhausted from starting their day at 3am.

I’ve talked to Hub twice on the phone and a few more times on instant messenger. He seems to be okay but the last we talked about an hour ago, he was sounding just exhausted. I hope he’s going to sack out soon, even though it’s pretty early in the evening out there. He said he kept moving his legs around on the plane, even though first class wasn’t as roomy as he’d hoped, and that he felt okay when he deboarded. Is that a word? Deboarded? What else do they call it? Anyway, he says he felt okay and when I talked to him later he said he was feeling okay just tired from the long day.

I was happy to hear from my SIL by phone (I couldn’t figure out the damn facetime thing through FB’s messenger) after she opened my gift to her for her wedding. I crocheted her a blanket that turned out to be about queen size (the pic below is spread out on a king size guest bed) in these amazing colors that made me think of her. Hub’s father said she has walls in her house painted in yellow and orange, so I found this awesome yarn and went to town. Took me several months (and a lot of pain) to get the blanket done, but apparently she loved it a lot. Made me feel like the work was worth it.

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I saw my father earlier when I took the dogs out this afternoon and he reminded me that I could stay at his house overnight or whatever. I said I was going to try to stay home, but if I had any issue I would just hike over there with the dogs and stay there. Around 8:30pm tonight he called to see how I was doing and how my day had gone. Then he reminded me that if I had any trouble I should just let myself into his house no matter what time it was. Then he gave me his late-night schedule so I would know how late he would be awake, but then he told me again to just come over whenever I need to.

I’m not sure if I’ll be able to sleep tonight or not. I still have some reading left in my second book of the day and a youtube video to watch for a channel I subscribe to. I dunno…I’m locked in the bedroom with the dogs and I’m sure I’m safe (even though I’m kind of worried that I locked the bedroom door and if someone needs to get in here to rescue me for some reason the locked door will be an issue), but it’s still weird. I kind of hope I’ll be tired enough to fall asleep at some point.

I had my regular soup for lunch and leftover takeout for dinner, so eating wasn’t a major issue today. I have more takeout again for tomorrow night’s dinner if I want it, and I (pressure) cooked up a fresh pot of my lunch-soup this morning so I have enough for the rest of the week. It’s boring, but I eat soup most days of the week for lunch because it means I don’t have to think about it. I dump it in a bowl, add some sauteed mushrooms, and nuke it…easy-peasy no thinking. Also, the soup is bean soup, so it’s pretty healthy…protein and fiber and veggies and carbs, all-in-one.

That’s pretty much it for today. One down, three more to go.

Next installment…

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Posted by on May 28, 2017 in anxiety, Butthead, control, dad, dogs, fear, food, hub, love, sleep, stress, time, tired

 

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Disease progression

My mother had a CT Scan this past Saturday to determine the progress of her disease and whether the current medication is doing any good. This afternoon, the doctor called to talk to her, then he called to speak to me at her request. She has trouble processing the things he says over the phone; I took notes while he and I were talking as best I could. He’s a nice person and very compassionate. I feel like he cares about my mother, and by extension, me and the family. I’m appreciative that he is honest, though he tries to couch things the best he can. I think he is a bit more straightforward with me than with my mother. But in the end, I generally tell her what he has said, because I don’t want her to not know things. There is little I won’t discuss with her, even when it’s difficult. I know my parents’ end of life decisions, as I’m their health care agent. We’ve done the paperwork for both of them, with me in the room to discuss things openly. I’ve spoken to my mother about concerns my brother had about my father’s mental health condition due to the pain he is in from his diabetic neuropathy and some back problems he is having. I know about their wills and their wishes. We’ve talked openly about death.

This time, I don’t know how to share with her. This time, I want to keep the words to myself, even from my brother and my husband and my mother’s brother, all of whom have been a part of this ongoing journey.

My mother’s doctor confirmed that her disease continues to progress, despite the current medication she is on. Spots are developing on her lungs, previous spots on her liver and in her lymph nodes are increasing in size. He is ready to try a new protocol at her option. But upon being questioned by me, he told me that this disease is going to continue to progress at a fairly fast rate, as it has to now. Post chemo, she had a recurrence in less than 3 months. Post radiation, basically the same time-frame, another three months.

We’ve been dealing with this since March of 2014. Eighteen months. What do I wish for at this point? That she makes it through to her birthday at the end of the year? To my birthday shortly after the new year? My husband’s birthday in early spring? The 2nd anniversary of her diagnosis? What do I hope for? No pain? No being bed-ridden? No needing 24 hour caregivers? No loss of dignity? No feeling of being a burden on the family?

The doctor is ready for us to talk to a social worker in his office about palliative care. He offered information to me on “what is to come”. He says Mom will start to lose weight for no reason. She’ll start being more fatigued and have even less stamina. She’ll move to being chair or bed-bound.

Those are the things I don’t want to discuss with her. The words I didn’t want to repeat to her.

She has been using a wheelchair and/or rolling walker with a seat (called a rollator) due to the stress fracture in her pelvis. But her ability to rebound from that has been poor. She’s been using the wheelchair and now the rollator since my niece’s wedding at the end of September. She’s tired a lot. Walking hurts her, and she’s exhausted after a short walk through the house. Is that the fracture or the disease? She’s short of breath sometimes, but she says it’s fatigue, the doctor is concerned it might be the spots in her lungs.

She tells me she wants to keep moving. She wants to go out and do things. I certainly don’t want her to give up. I just ache for her. I ache for what is to come. And I’m finding myself conflicted as to what to share with her…how much of my concerns I should and can share with her. There’s nothing she can do to change how I’m feeling, so why burden her with that? But I don’t know how to stay UP and positive all the time, especially since I’m working hard to hide the pain I’m in a lot of the time. I’m struggling to stay positive, to be her cheerleader, to put on a good face every time I see her.

It was easier to talk to her about all these things when she was still on the high side of this disease. Now, on the downward slope, it is all too painful and too real. I hope she will lead me to what she wants to talk about. But at some point I know there will be things she WON’T want to talk about that I will need to find the strength to address.

My mother is dying. How fast it will progress is beyond any of us. What to hope for, what to wish for, what to do…all beyond me at this point. I’m lost and angry and overwhelmed and sad and crying.

 

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Pre-op appointment completed

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

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

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

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

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

 

 

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Ripples

We made it through the orientation session for Mom’s chemo, and then the first infusion itself yesterday. The facility was nice, the nurse was really great, and Mom had no allergic reactions or issues. The worst part was that she was annoyed at having to sit around for so many hours. The infusion center only allowed one person to sit with her at a time, so my father and I swapped out every hour or so. I would sit in the waiting area and he would sit with her. Then when he needed a break, he came to get me and I went and sat with her.

We crocheted, we talked. She played games on her iPad and read her book. We made it through the day with no issues. She had lunch during the infusion, I ate in the waiting room. My dad walked to a restaurant in the main hospital and ate while I stayed with Mom. I brought a ton of things to do–two tablets, my crocheting, my phone–and I kept myself busy. The infusion room were large and I felt like just in our area, there were about 15 people. The infusion center works with all kinds of infusions, not just cancer, so there were all types of people–ages, stages of health, genders. It was surreal, and I felt like I didn’t know whose life I was living. I don’t know how else to explain it, other than I never expected to see my mother sick. And I never expected to sit with her in an infusion center. And I never expected to look at her and SEE my grandmother. All of these things converged on me at once yesterday.

Today I can see the manic side effect in my mother already today from the steroids they gave her pre-chemo. There’s a huge list of side effects for her–including hair loss, of course–that we are trying NOT to anticipate. She’s as prepared as she can be, and from that we are going to take it one day at a time. And deal with what happens on that day without trying to anticipate what will come next…what will get worse or not.

I’m so happy that I’m able to help my parents. But I’m afraid of letting them down if I get sick, or can’t live up to their expectations. I know they would be able to navigate this without me…I’m not so vain to think they can’t handle things. I keep reminding myself that they would be okay, and that I’m going to do the things I can. And let my brothers and others help when they can.

And enjoy the time I’m spending with my parents no matter the situation we’re in at the moment. We can still have fun in the infusion center, so that’s what we’re going to do when we’re there.

I feel rambling. I’m going to stop now.

 

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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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