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Category Archives: future

Two year cancer update

This past week I went to see my gyn oncologist for my annual cancer check-up. Oddly, the office was very quiet and they took me back on time. Normally the place is mobbed and we wait forty-five minutes to an hour to see the doctor. I’m not complaining, it was just so weird. As it was, my original appointment was at 2pm, but the Thursday before my appointment the office called to say the doctor was going to be out of the office at that time and could we move the appointment to an earlier time. We, of course, got there about twenty minutes early, and during that time we saw my doctor wandering around casually like he had nothing much going on. Normally he’s running from one exam room to another and never comes out to the front the entire hour or so we’re waiting.

I wasn’t sure if all this was a good omen or a bad one.

My blood pressure is always good in their office. This time, though, the wrist cuff they normally use wouldn’t stay velcro’d on, which was a bit upsetting because it made me feel like my wrist was too fat. I had to stop myself and change my inner monologue, because every other time we’ve been there the wrist pressure cuff has worked. I assume this particular one was losing it’s velcro power. So the nurse did an old-fashioned manual check and again my BP was pretty awesome. Normally I get white-coat syndrome and my BP is kind of high, but at the gyn/onc’s office it’s in the normal range…and I have no idea why.

Le Dottore came into the exam room wearing an awesome royal purple tie with white polka dots. Purple is mine and my mother’s favorite color, so I took that as a good sign. I even told him how much I loved his tie and he said purple was his favorite color. We did the exam–which took no time at all–and he pronounced everything “awesome.” I asked about my yearly CT Scan, because the original plan in 2015 had been yearly ct scans every July, and yearly paps every January. This last January he said paps every TWO years…and this week he said he saw no reason for a CT. I said I thought it was yearly CT’s and paps every 2 years. He said “no reason to do paps unless there are symptoms” and basically the same for the CT scan. He said my exams have been perfect and without symptoms, he didn’t see a reason to do the scan. I don’t know if their policies have changed due to new information or what, but it was kind of stressful to hear that they wouldn’t be following me as closely as I had been told. I said I was a little concerned about not doing a CT, but that I understood getting a CT subjected me to radiation (which can actually cause cancer), so the choice wasn’t cut and dry. He said it was my choice, we could do one now or talk again next year. He said recurrences happen most often in the first two years, but even that was a low number (he said 10% but I’d read 15%). But again, he was happy to give me a referral if I wanted the CT. I asked for the referral but said I’d think about my options.

I discussed this with Hub and with T, and in the end I think I’m going to get the CT scan. I’m too worried about all the bits inside that he can’t see or touch, where cancer could be growing without any symptoms or pain. (My mother had cancer recurrence and she had no physical symptoms that she spoke of.) If I didn’t do the CT when I could have and then something happened, I’d beat myself up something fierce. And since “ct scan radiation causes cancer” is actually NOT something they can prove scientifically–it’s a guessing game because they can’t subject people to CT’s to see if they get cancer–I’ll be taking what is an unknown risk versus the actual risk of missing something growing.

I’ll be waiting until after the wedding to do the scan so it doesn’t make me feel lousy or sick this week when I have so much to do. And I’ll have the relief of knowing there was nothing to be seen that could have been seen.

Two year cancer check achievement unlocked.

 
 

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On borrowed (big dog) time

Hub and I have an evening wedding to go to in a few weeks. It’s a formal occasion, which I talked about briefly before when I bitched about having to find a gown and shoes. Hub had to buy a new suit, too, because the pants on his old suit were messed up…even after taking them to the tailor for the last big event we had. Anyway, I digress (already, jeez, I’m only in the first paragraph), because this isn’t about the wedding.

It’s about the dogs.

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Who, me?

 

Technically, not so much Butthead, but more about Le Moo.

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You can’t see me hiding back here, can you?

 

We’re hiring someone to come dog-sit while we’re at the wedding, mostly because we’re over-protective and we have to be forty minutes away just before dinnertime and who is going to feed our pups? The wedding is a family affair, so anyone who might be able to feed the dogs are all going to be with us at the wedding. So we’re going to hire someone to come to the house, feed the dogs, and hang out for a while to let them out and stuff. This means finding someone to hire, which means telling people about our dogs.

In theory, this is no big deal because we talk about Le Moo and Butthead all the time. You think your friends with new babies are bad? Yeah, they’re amateurs. We love our dogs, we spoil our dogs, we talk about them all the time and will happily explain how cute, adorbs, and completely disobedient they are (which they really aren’t most of the time). So it should have been a cinch to fill out the online profiles for the dogs when searching for a dog-sitter. Until Hub had to fill out their ages. Then he had to try really hard not to cry.

Both our dogs are large. Butthead is a svelte 76lbs…I wish she’d gain weight but she just doesn’t seem to be able to keep it on. I think she’s on the thin side but our vet says she’s a perfect weight. So at least I know she’s not sickly, since he’s happy with her physicality. Le Moo, on the other hand, is always on the…um, chunky side. She vacillates between 84-95lbs. At her highest, it was 95, now on a moderately strict diet she’s probably around 85lbs. She’s a big girl, but her (suggested) breed does indicate a bit of rotundness, so we’re all good with her size (except the vet, of course).

If you know dogs, you know that big dogs don’t live very long, generally speaking. Le Moo supposedly is part Great Pyrenees, and in looking up their life span it says 10-12 years. Le Moo is going to be 10 this fall. Although she’s not really slowing down too much (any slower than her norm and she’d be asleep all the time), we do see a moderate change in her personality. When my Mom’s English Lab got to a certain age, she changed from being completely ball-obsessed and independent to clingy. Le Moo is getting more and more clingy with every passing week. For her, that means she’s seeking our attention much more than she used to, and I find that she’s seeking out Butthead’s companionship more. At night, Le Moo used to sleep far away from Butthead, usually the complete opposite end of the room and sometimes hiding in the closet. Now, she will actively go and sleep right next to Butthead. And when we wake up in the morning, there are more days when she’s still there, rather than on her own bed or in the closet…or somewhere else away from Butthead.

Hub was incredibly upset to realize Le Moo’s age. I guess I’m more obsessive about these things, so I know her age and it’s difficult for me to forget it. I often find myself hugging Le Moo and whispering in her ear that she better not ever leave me. But it’s going to come and I am going to be devastated. I cried for months after we adopted her because I wasn’t over Sweet Pea’s death less than two months prior. As much as I wanted to love Le Moo–I’d picked her out and I’d made the decision with Hub to adopt her–I resented her because she wasn’t Sweet Pea. And she didn’t seem to need or want me in her life. She was so aloof and so independent and I was accustomed to Sweet Pea who was clingy and shadowed me everywhere.

When I realized what was happening and I began working through my grief over Sweet Pea, I came to understand that Le Moo was a different dog. And that she was the dog I needed at that time…and I had to be the owner she needed. Obviously I’ve become incredibly attached to Le Moo, although it is in a different way than SP, and I am terrified of the day she leaves this earth.

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I’ll just sleep here so you can’t put the recliner foot rest up or even put your feet on the floor.

 

I watch her when she’s out in the yard, because despite her weight and size, she can move like nobody’s business. If there’s something to be chased, she’s fast and light on her feet. If there’s something REALLY good to chase and bark at, she’ll actually pogo up in the air like she’s on a pogo stick or a trampoline. It’s outstanding and amazing to watch! People who have met her and know her–she mostly acts like a lump–have actually stared in shock when they’ve seen her run or pogo out in the yard. No one understands how she can do it and most won’t believe it until they see it, but it’s true. And so far, she’s still chasing and pogo’ing, so I am happy about that.

I don’t know how she dares even consider leaving this earth, but inevitably it will happen. Hub and I will be devastated. Until then, we continue to love her (and tolerate Butthead) for every moment we have together. Borrowed time or not, she’s still my Ladybug, and I’m going to celebrate all that she is until and then some.

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Why yes, this is my ball full of Kix cereal, thanks!

 
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Posted by on June 29, 2017 in anxiety, Butthead, dogs, fear, future, hub, Le Moo, loss, love, Sweet Pea

 

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The new year

I have been watching and listening to everyone say how bad 2016 was and how they couldn’t wait for it to be over. I woke up this morning and read all the posts on FB and here and twitter saying happy new year and 2017 is going to be so much better.

Guys…I’m sad as fuck to see 2016 go. It was a hard year, but you know what? For me, 2016 is hard to let go of because it was the last time I got to be with my mom. It was the last time I was able to hold her hand, hear her laugh, hug her, ask her a question and get an answer… It was the last time I got to celebrate my birthday with her. It was the last time she was here on earth with us.

Yes, I lost her in 2016. Yes, I had to watch her die, and I had to help with the funeral and the headstone and all that horrendous stuff. And yes I’ve had to watch my father and brothers and my husband suffer through the loss. And yes, I’ve had to live through my own pain of loss, and I’m still grieving horribly. But for three months in 2016, I had her here physically on this earth. I got to see her eyes, I got to see her smile, I got to tease her about something stupid. I got to do stuff with her. I got to be with her. I got to have her here.

Leaving 2016 behind… I stayed up until after the calendar ticked over. And all I felt was sad. My life will never be as good as it was when she was alive.

 
 

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Some days it feels too hard

Le Moo likes to hang out in our partially unfinished basement. We don’t know why…if it’s the cold concrete floors, the darkness, or the general idea that she gets to sleep uninterrupted down there. We have a baby gate on our steps that we try to keep closed when we’re not down there, otherwise she goes downstairs and refuses to come back up unless there’s food involved. Unfortunately, sometimes Hub goes downstairs for something (it’s sort of his man-cave) and Le Moo follows. Then when we finally get her back upstairs, if Hub forgets to close the baby gate (it’s set up down half a flight of stairs around a corner out of sight) then Le Moo will just kind of disappear and we’ll have to go searching for her.

So she was down in her lair this morning and it was time for their lunch, so I’m yelling and yelling for her–sometimes she’s a hard sleeper–while I’m putting together their food. I turn around and I see her in the hallway at the top of the stairs and I’m like “you lazy cow”… and then I realize she’s limping. And my heart sinks.

We adopted Le Moo in the fall of 2011, and from what I remember, she was about 3  1/2 years old at the time. We’re at about 4 1/2 years from that time, so she’s about eight years old. She’s 95lbs (ish…we’re working on getting some weight off of her, even though we’ve never been able to accomplish that in the last 4+ years), and we think she’s a large breed dog. Large breed dogs have shorter life spans than their smaller counterparts. Le Moo is the twilight of her life. She’s had these limps on and off through her entire time with us, and our vet has never found anything. Despite Le Moo’s stature, she can haul ass when she wants to, and she’s prone to po-go’ing when she sees a bird or some other critter she wants to chase outside the fence. We’ve never gotten the po-go’ing on camera, but it’s pretty amazing the amount of air that she can get when in flight. Most of the time, the limp resolves, probably because she strained something when running or jumping. It’s wholly possible this limp, too, will resolve. I sat on the floor and checked her feet, paws, toes, leg, elbow, etc. She didn’t show any distress and I found nothing.

After the initial alarm, I’ve left her to rest on her own. Now I’ve been interrupted by the request to go outside. I took the opportunity during Le Moo’s snooze on the deck to inspect her paw and I have found a sore. I thought there was something on her pad and I pulled it off but it felt like…a sticker (as in a piece of paper with glue on it). But now there’s a sore left behind, which explains the limping. I’ve contacted the vet to see if we need to do anything other than keep it clean, but there’s not much we can do with a foot,  you know?

Anyway, after the initial alarm and the back and forth with Hub about what was going on, I told him If there was any reason for me not to get another dog in the future, it’s the worry and anxiety I get over them. It’s so hard to be worried all the time. He said he understood, but that they give us so much back, it’s worth it. I said, Some days it feels too hard. Some days it does. Le Moo is in her golden years. I can’t even fathom the idea of losing her, especially after losing SP. Butthead has been throwing up on and off, not to mention her ACL replacement and ensuing second surgery AND ensuing limping issues. I go to sleep every night and wake up every morning wondering if Butthead has gotten sick. We don’t know why she’s throwing up, and it’s sporadic and hard to figure out. We’ve put her on digestive enzymes in case it is acid reflux or tummy issues, and we have pepcid on hand at our vet’s recommendation if the enzymes don’t work. But it’s more worry for me. More anxiety. These I need like a hole in the head.

Don’t get me wrong, I love my dogs. I love my dogs more than I love most of the people in my life. I can’t imagine my life without them. I couldn’t imagine life without SP or life without my parents’ dogs over the years (their current, Cray-cray Lab, is limping and we don’t know why…sigh). But the stress over caring for them and worrying for them is tough. How do I balance it? How do I manage it?

How do I handle the ache that keeps settling into me knowing that Le Moo is aging…and that one day she’ll be gone? How do I not sit in this chair and cry?

 

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Why am I so tired?

***this post was previously scheduled ahead of time. you might have already seen “Where do broken hearts go” which indicates that Mom had already passed. I wrote this post below a week before her actual passing.***

Normally this would be me asking this, but this time it was Mom.

We wanted to take Mom to see some local gardens today. But this morning was a bad morning for her. When we got her into her recliner in the family room, she said to me, “I don’t know why I’m so tired.”

All she does is sleep and drink, really. She’ll eat bits and pieces of actual food, but mostly she is existing on juice, boost or ensure nutrition drink, hot chocolate, and hot tea. Some water, too. She tells me she’s only dozing, but I think she’s actively sleeping. I watched her some this morning while she slept/dozed, and she made faces, a few noises, but her breathing was fast. I thought it would be slow, but it’s not.

Why is she so tired? Because her body is shutting down. She’s actively dying.

How do I answer her? I didn’t. I shrugged, and moved to talk about what we’re going to do when we get to the gardens today. I had hoped it would be sunny and warm, but for the moment it is still overcast and not quite warm yet. At this point, though, it is what it is. Because in my heart I don’t believe she’ll be able to go at a later point.

My brother from out of state is driving in this weekend to stay for a little while. I had a terrible thought today as to whether he’ll make it in time or not. I know some of that is my anxiety taking over and I tried to let the thought go. I can’t make predictions, I can’t KNOW what is going to happen, I can’t make my brother get here in time or not. I can only get ready to go out today, to show Mom the beautiful plants that she loves so much. Gardening is her thing, she loves plants and trees and everything.

I’m back from our trip to the gardens. It was a long trip, more in the car than in the gardens. I think Mom was happiest that she was outside in the air, even though most of the gardens we saw were inside (as that was where the accessible routes were for the most part). Although Hub went with us, Mom didn’t engage as much as either he or I had hoped. She looked at a few things when we pointed them out, but otherwise she let Hub talk and joke and she just held her head up on her hand. Just like she does at home.

I watched bits and pieces of that hospice video again, trying to remind myself that everything Mom is doing is exactly what is supposed to happen. That although death is incredibly sad, it’s not BAD. It’s what happens next. It’s part of our cycle of life. That sounds like a terrible thing to say, but it’s the truth. I don’t WANT my mother to die, but the truth is, she IS dying. My best hope for her is that there is no pain at any point, and that she doesn’t feel awash in fear or anxiety. I don’t know what else I could hope for.

We brought Mom home, got her back into her recliner, and after a drink of some juice, I could see she was already looking to withdraw into sleep again. I told her good night and said I’d see her in the morning. Hub and I came home, made dinner, and crashed.

I spent some time talking to someone about getting some extra help in the house for my parents (the woman who took care of my grandmother, who now lives in another state). She had some recommendations and suggestions for me, and I’ll take them to heart. I’m hoping that by Monday we’ll have something set up. I hope we can squeak through the next couple of days without too much trouble. I just hope I’m doing the right thing at the right time.

 

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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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My mom is dying

Mom had a CT scan to see why she is coughing so much and to determine why her abdomen is swollen. They not only found that her cancer has continued to progress despite the new medication, but she also had what looking like multiple blood clots in her upper legs. So we rushed in to get ultrasounds of her legs, only to find very long clots in both legs. One leg is almost completely blocked by the clot, the other one is pretty close to being blocked. So she is on blood thinners now, and the lymphedema wrapping is now postponed until further notice. No more wraps, no compression garments, nothing.

We may never get back to it. Her cancer is continuing to progress fast. When she has downhill turns, they come overnight. She’s not walking at all, she’s in the wheelchair almost all the time, except when she’s on the couch, in bed, or in the car. She has no energy. She’s depressed. She’s disengaged most of the time, emotional sometimes, angry other times. But at the moment, the blessing is that she has no physical pain.

Her oncologist doesn’t think she’ll make it to June, or if so, not much beyond. She had a trip overseas planned for June, which I think was giving her something to look forward to. Something to hope for. We haven’t told her yet what the doctor said, or that she won’t be taking the trip. Even if she’s alive, she won’t be well enough, and the blood clots just sealed the deal.

With the discovery of the blood clots–and the requirements of suspending the lymphedema wrapping appointments–Mom’s schedule has gone from busy to empty. Which, while that gives her a break, it also gives her time to sit and stew. I’m going to do what I can to engage her, but it is difficult these days. Having a one-sided conversation is hard for any length of time. And knowing how much I should attempt to engage her is difficult, too. We used to be able to sit and crochet together…and talk or not. But she won’t crochet anymore…and she doesn’t seem to want to talk anymore.

I watched a video by a hospice nurse talking about the last months/weeks/days/hours of a person’s life. Although I cried through parts of the video, I feel like it helped me understand how Mom’s body is going to be functioning in the next months. I’m not stressing over her eating or drinking, because a body that is preparing to shut down doesn’t need the same energy as one that is actively living. So I feel like if she wants to eat/drink, she can. If not, I’m not going to be stressing her out by harping on it.

Today my father said to one of my brothers, “She’s not coming back from this” a few times. I talked to him without my mom this morning, and I can see that it’s starting to set in on him. Sometimes, anyway. Sometimes I think he’s completely in the dark, but maybe that’s how he’s coping. The brother that lives with them is barely acknowledging any of it. Another brother is dealing with his own depression issues, and although he is trying very hard to be helpful and engage with all of us, I can see that his medication is keeping him dulled. The third brother who lives out of state…he’s emotional like I am. But he’s so far away that he’s not as involved as the rest of us.

I’m randomly crying. I feel like I’m grieving and she’s not even gone yet. I’m trying to hold myself in the moment, but when it’s quiet, I just can’t. I feel the weight of the loss on me, heavy and cumbersome. There are moments when I feel like I can’t lift my head. There are moments when my thoughts whip around in my head so fast that it makes me dizzy. I try to find a center, a grounding, something to soothe me, but I have not been successful. It’s not anxiety, it’s not panic, it’s just so much sadness. Not depression, I don’t mean that. Just sadness.

I’m trying not to show my mother how emotional and angry and sad and upset I am. But I don’t want her to think that all of this means nothing to me. I worry that she sees me buzzing around, doing this, and that she thinks that I am not upset. Because she knows I’m the emotional one in the family, and yet I’m not showing it this time. But she doesn’t ask. We don’t talk about it. The sicker she has gotten, the less we have discussed how sick she is, or how sad we are, or how afraid we might be. The sicker she has gotten, the less we have talked. The sicker she has gotten, the further away I feel from her, which I guess is natural as she prepares to withdraw from her life. But oh, how it hurts. How it hurts me to not be able to talk with her and be myself with her.

How much it hurts to even admit that she’s dying. Even though I’ve been open and honest with the family and with her good friend. Somehow “reporting” what has come from the doctor has not hit me the same as saying it in context of my relationship with my mother. I guess I don’t know how to explain that any other way.

 

 

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Nothing is forever

I was putting wraps–ace bandage-like bandages–into the wash yet again for Mom. When she goes to the lymphedema clinic or I unwrap her at home, those wraps and all the under-bits and over-bits have to get washed. So every other day or third day I’m unrolling bandages and stuffing them into lingerie laundry bags so they don’t get tangled in the washer. So I’m stuffing the bags and thinking how often I have to do this–in small loads–because it’s costing us extra water and extra electricity and it’s not really about those things but it’s what is running through my head. And I tell myself that it’s not forever because eventually Mom will get compression garments that she can put on and off at home with velcro or they will be like bike shorts and knee-high combination compression garments. They will be used to maintain the swelling, not too reduce the swelling, so we have to get her to a point where the swelling is reduced and is at a plateau. So I tell myself that this constant washing and drying and re-rolling of bandages won’t go on forever.

And the phrase “nothing is forever” just goes through my mind over and over again. Nothing is forever.

Hub asks me if I’ve thought of what I will do when my mom is gone. Not in a mean way…we try to stay open and honest about what is happening with Mom. And at some point, all this care-giving and running and doing will stop…and I’ll be without a path again. Even worse, all the things I’ve been running and doing will stop abruptly and so how will I handle that. What will I do? I told him I didn’t want to think about it now, that when the time came I will just do something. I know I’ll have lots of things still to be done to handle Mom’s part of the estate. I know I’ll be helping my Dad take care of himself and their dog. I know I’ll have some things to do, but not like right now. Not like it’s going to be in the coming months as Mom gets sicker and sicker. But I don’t want to go that far ahead. I want to take care of what is front of me right now.

My aunt and uncle stopped by today to see Mom. My aunt pulled me aside and starting telling me of all the things I’m going to need to plan for with Mom’s passing. I wrote them down, but I told her that I wasn’t thinking ahead that far right now. That I needed to concentrate on what was right in front of me, and she reminded me that we won’t have much time to “plan” at the time she passes. I said I’d think about it and see what I could pre-plan.

I’m working so hard to stay in the moment, to do what needs to be done right now, and everyone else is asking me to look ahead. I look ahead too much and I get frozen and stuck. I get afraid.

I’m walking around trying to keep myself on a level emotional keel, but then I go home and explode. I kind of freaked out on the phone with Hub, who ended up rushing home to check on me, and all I did was cry. I got overwhelmed and I just couldn’t hold on anymore.

But I recovered, and I continued on. Which at least proves that I can.

 

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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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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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