sticker shock

im currently experiencing a bit of sticker shock. dying is expensive.

first of all, if my granny hadn't purchased a plot for my dad, i would have walked away from lakeview in longview last week. i don't have any patience for bad customer service. i am a customer service manager. i have worked in customer service for a long time. it is not acceptable to not return two emails and a phone call to someone who needs to purchase something because they will purchase what they need from somewhere else. are you so busy you don't want my money? not acceptable. i emailed them twice last week (a specific person who gave me their business card when i came by) and he never emailed me back. i called saturday and the receptionist was very kind but unable to help me. turns out i needed to talk to the person who wouldn't email my back. she promised he'd call me right back and he never did. i called yesterday because he still hadn't called me and again, too busy for me. he finally called me back and was like, when would you like to set up an appointment to come in? um, excuse me? did they not pass along the message that my dad is in hospice care. he can't be left alone. i cant just drive over to longview. so he says, ok, how does your schedule look for monday? monday? really? 5 days from now? do you know how long 5 days are in my world? so he says, well, i can come by tomorrow afternoon and I'll come to you. ok deal.

well he calls this morning. he is not licensed to sell things in louisiana so he can't bring the paperwork here for me to sign, i would have to cross over state lines to sign it or i can work with one of his partner funeral homes over here. i said, excuse me, what paperwork? lets back this train up. i have been trying to get in contact with you for a week. i am 26 (and i know i sound like a little girl on the phone). i have never planned a funeral before. we need to discuss options and prices before there is any paperwork for anything. what a racket that is.

dads still hanging in here. hes been mostly coherent. today he seems really with it. after the nurse left this afternoon he told me he wanted to talk to me later. i told him we should talk now and asked him what's up. he asked me "how did all this happen?". I explained to him that he was in hospice care because the hospital couldn't do anything else for him. he said, yea, i know that. i told him we're staying at home with him because he's not strong enough to be on his own. i told him they don't think he has much time left. he said he had kinda put that together. he asked how kyle and i ended up doing this. i told him we were worried about him and that we could hire a sitter but we thought he would rather us be there. he asked if craig and i still had our house and i said yes, we go home at night but that craig was in vermont now. i told him everythings fine. i asked him if he was scared. he said he's been scared. i asked why he was scared. he said he was scared of dying. i asked why he was scared. he will get to go to heaven. he told me i should go back and see bre (who had just brought me lunch). i said, no, no. its ok. i told him i don't get to talk to him much because he doesn't always make sense.

i told him id been talking to lakeview. i asked him if he wanted to be there. he just said i dont know. i told him he would be next to granny cherry. he just said we'd talk later. to go see bre.

i also asked if there was anyone he'd been wanting to see or talk to. he said "i don't know". i try to reassure him that he doesn't have to worry about kyle and i, that we would be ok. he said he worries about us a lot. the most. i told him he doesn't have to. i tried to tell him how kyle is really stepping up. monday, our nurse was getting ready to go home and it was her last day with us doing continuous care. she was going to help us change the sheets and brittany hadn't got back with some new sheets yet. she had just walked out when brittany got back. i asked brittany if the nurse had left. she said yes. i said, no, did she physically pull out of the driveway yet? she said no and i said, go grab her, she was supposed to help us change the sheets. kyle was like, its ok, its ok, we got this. its ok. i was really shocked. im the one supposed to be keeping us from freaking out, right? he came up and gave me a hug and was like, don't worry, we're going to get through this. it really shocked me.

the nurse asked me earlier this week if there was someone dad was waiting on. she said he's really hanging on. he has such bad days. i mean, unable to swallow, completely unresponsive, staring off into space, bad days. but then he has days like to day where he's awake and making sense and able to understand conversations and drink on his own (from a sippy cup). she says hes fighting. hes holding on for something. i just don't want it to be because he's worried about us.

i can feel all the prayers. i havent freaked out since craig left. ive been pretty calm and together all week. i cried a little today talking to dad, but other than that ive been ok. thank you all. thank you for the meals and the coffee and the texts and the facebook comments. even if i dont reply, i read them all. i also eventually listen to the voicemails. some calls i really don't get because i have horrible cell signal here, so i don't answer. im glad that you called but i dont always want to talk. im still exhausted all the time. patrick has a cat over here where dad is staying and im allergic to cats. combine that with all the dust and the remodeling and i sneeze and my nose runs all day. when i take a zyrtec it gives me a sinus headache. all the sneezing and the stress and the poor diet and poor sleep will be catching up with me soon.

craig is in vermont. im glad he's getting to see his family and spend some time in the cooler weather but i wish i was there. i love his family. and i like spending time up there. and im sad that i'm missing his brother's wedding. and i miss having craig here with me. sounds like everythings going smooth up there though.

i finished my "scarf" last night though! its too short to really be a scarf, but i dont know how to add more yarn when i run out yet so i just finished it off. it has a few mistakes at the beginning when i was still learning but the last 2/3 of it a great. its easy. i figured out how to cast off (take the yarn off the needles and end the stitching) by looking up a technique online that sounded like what lori told me to do. turned out good. im ready to start a new one, i just need to get over to the store and get some yarn and possibly some more needles. i really want to make a swing jacket or shrug but i don't know how to read patterns, haha. guess i'll make another scarf for now. maybe even a real scarf this time! now that i have the hang of it it shouldn't take me long to make another one.

ive been going through all kinds of pictures to find some good ones of dad. heres a few for me to leave you with:








i just realized dad's wearing some sort of plaid in all of these pics. guess we know what he likes!

by the way, thats one of him, one of him and my mom when they were young, and one of my grandpa, dad and brother in 2005.

the emotional rollercoaster

back with dad. he's sleeping. been sleeping since i got here. i don't want to wake him. the whole point of his medicine is to make him comfortable and i don't think it gets much more comfortable than sleeping so i'm not going to wake him up to take anything.

saturday was a good day. really good. he ate a lot (a yogurt, an applesauce, an ensure, a few bites of banana pudding). he talked with us and his visitors. he was funny. almost himself. awake most of the day. i mean, he still had his out of it moments. i brought logan (my miniature dachshund) over to him satruday night and he thought it was the cutest thing ever. he didn't remember him. or that i had two dogs. but he was mostly in a good mood and well enough to make you think, man, maybe he's going to come back and fight this thing.

and then there was sunday...

he was in a lot of pain sunday. he wouldn't/couldn't take his morning medicine. he was argumentative and frustrated with everything. night and day from saturday. he wouldnt eat anything. he didn't talk much and when he did, it didn't make much sense. he forgets where he's at. he slept most of the afternoon. they've upped his pain meds and started giving him liquid morphine instead of the lortabs he was taking in between his time released morphine tabs.

they were both hard days in their own way. saturday was hard because it gives you that false hope that he could get better. plus he was so...him. sunday was hard because he was bad. its so hard to watch him suffer. and to look and him and know, that's not him. that's not my dad. my dad is goofy and silly and smart and kind.

his eyes strike me the most. his pupils are so tiny. they never change with the light. he looks at things without even seeing them. sometimes me. the nurse describes it as him having one foot in our world and one foot in the next. sometimes when he's looking around, he's not looking around in this world. those are the times it's easier to let go. it's like he's already gone.

so for now, ill take advantage of the quiet and get some work done.

the new normal

im sitting in dad's room,listening to his oxygen/moisturizer run. dad's semi asleep. he's running fever so he's only covered in a little piece of a sheet. he just asked me to take the comforter off the bed altogether. im exhausted.

i was supposed to make funeral arrangements today but dad has been too awake for me to feel comfortable making any calls about it. sometimes he's aware of what's going on, sometimes he hallucinates. he asked for my help getting up earlier so he could go walk around japan. he said a man told him he was in japan. i told him we were just in louisiana and it wasn't that interesting, he should probably just stay in bed. he said oh, ive been here before. i told him yea. he said, that man lied to me. i told him yes, that man lied to you. he knows who i am but forgets im here sometimes. he's actually a lot better today than he has been all week, minus the japan thing. he's spent a lot of the day awake and can follow simple conversations. he was so bad yesterday they had decided to go with round the clock care for him starting today but he's improved so much today that they're holding off on it. and it has been a pretty good day. tiring, because i have to bed over really close to him to make out what he's saying, but good that he isn't so out of it.

the nurse told us last night she thought she had 1-2 weeks left. i told her that was longer than i thought. she gave us a book about dying so we know what's coming.

i got a little work done this morning but even with everything here it's hard to work. everyone is dependent on me. it's like no one can just make a decision or do something, i have to walk them through every little thing or tell them exactly what to do. my phone rings all the time. if it's not a nurse or a CNA or a dr, its a friend or family member, checking on me or dad. and it's all wonderful sweet people who just care, but it gets really overwhelming.i had a breakdown this morning about it. i panicked this morning when i got here and i thought, omg i can't do this. i called craig (who was on his way after he picked us up some breakfast and took care of the dogs) and told him he needed to hurry. when i got her dad's bed was pulled out from the wall and diagonal in the room. there was a diaper on the floor and dad was laying in bed in nothing but a tshirt telling me i needed to call for help. i knew i needed to get something on him and get his bed pad changed and get him back in bed and i just thought, i can't handle all this. but we did it and i got through it and i fed him a whole yogurt cup and half an ensure and by the time craig got here i had everything under control. and it is really really hard. but i can do this.

i have some of the best friends and family a girl could ask for.

well dad has really fallen asleep now. im going to take the chance to go through some pictures i brought over and havent had a chance to get to.

oh, nevermind...dad's phone is ringing...

hospice

I've had a lot of calls to and from the Hospice people today. I'm having them put in the hospital bed at the new house. Kyle got all the flooring laid yesterday. We finished grouting the tile in the bathroom, we just need to paint, finish off the new sheet rock we put on the ceiling, and put the toilet and sink back in and we can get dad over there. We made good progress in the kitchen and living room last night too. It's coming together.

Dad's kind of out of it. He sleeps a lot. He's not really eating or drinking. I've had lots of people tell me they can't get him on the phone either. There's a nurse at his house right now checking on him. I've talked to doctors and administrators. Everyone from hospice is really really nice.

I told the last lady I talked to about how I went over at lunch yesterday and made dad some pasta and got him to drink some Gatorade and take his medicine but when I went back after work he hadn't eaten his food and hadn't drank anymore from his glass. I told her I brought him some food (he told me at lunch he wanted a meat pie so I brought him one) and he took 3 little bites of it and had me put it in the fridge. I gave him an Ensure that I think he drank most of and he took another pain pill. I told her I needed help getting him to eat. She told me that as diseases advance that people don't have an appetite and not to try to make him eat if he's not hungry. I told her yea, but if people dont eat...And she said, i know, its easier for me to say. So now on top of not giving him blood anymore, they're also not even going to make sure he gets any nutrition either.

I'm not ready to give up and quit fighting. I don't understand why they want me to.

Dad told me yesterday, I'll be back to normal in a day or two. I just told him yea. I know it's not true. I feel like right now I won't have my daddy back at all. He's not himself anymore. I'd be lying if I said I wasn't scared.

Out of time

I called my dad this evening before I left work. He sounded pretty rough and had developed a cough. He told me he was home though which at the time I thought was great news. I headed over to the house were getting ready for him to move into so we could continue all the clean up and renovations that need to be done. They're moving in with a family friend who is living In his grandparents house. It's full of crap and everything dirty. My brother has almost totally redone the bathroom, we got flooring for dads room and the hallway, we've taken out bags and bags of crap and boxed up other stuff to get it out of the way.

So we worked over there tonight and my brother decided to take me through the garage. As were in the garage he tells me that dad is doing bad and he doesn't think we have much time left. I told him he sounded bad when i talked to him earlier. He said dad has started coughing blood. He said the nurses told him not to be surprised if he starts coughing up tissue. It's a total 180 from Saturday. Saturday he looked good, he was in a good mood, he got to see his old friend Harry, my aunt and her husband, my cousin and my uncle. It was a great day. Yesterday when I went to see him he looked tired and seemed kind of out of it. Now today he's coughing up blood.

Kyle said the doctors won't give him any more blood. They said that it wouldn't improve his prognosis and since he's done with radiation they don't need to keep him strong anymore. They can't find any bleeding, they can't get him to quit running fever, they basically can't and won't do anything else for him. I feel like they've sent him home to die.

So tonight I hit reality head on. No more denial. I feel like theres an elephant sitting on my chest. I feel like our days are numbered. They were giving dad blood every 3 days while he was in the hospital. How long could he possibly make it after his condition has now taken a visible turn for the worst without any more blood transfusions? Theres still so much that needs to be done to get Kyle and dad into this new place, which is literally across the street from my office. I feel like were out of time.

Expect the unexpected

Last Tuesday I took dad In for his cancer dr appointment. They decided his blood was low enough that he needed blood but they were also concerned because his potassium was too high. Appearantly if your potassium is too high you can go into cardiac arrest. They almost immediately started him on something to bring his potassium down and decided to give him 2 more units of blood. They also ordered a scan on his intestines since they never found active bleeding in his stomach or colon. They also ordered a bone marrow scan to see if he is even producing blood anymore. They asked him if he wouldn't mind being admitted so they could keep an eye on his potassium overnight and they would just give him the transfusions then. He agreed to be admitted so what started as a routine visit turned into a hospital stay.

While dad was in the hospital they did the scan on him. He describes it as torture. You have to lay on your back for an hour and a half while it scans you and you're not allowed to move. His has a tumor on his spine so laying still for that long on his back doesn't really work. Luckily they did let him go home wednesday though.

Thursday was back to "normal". I took him to radiation and he was in a good mood. While we were there his best friend from longview called about the birthday party i planned for dad on Saturday. Dad didn't know in invited him. He started to tear up when I told him. I asked him what was wrong and he said he was just thinking about all the people he was going to miss...I was goad that me obviating Harry made him happy and finally excited about his birthday. We planned a big cookout with as many people as we could think of and a brisket and lots of other cookout goodies. Thursday was a good day.

Friday my boss really needed me at the office so my brother had to take him to his cancer dr appointment. I had to do some presentations for some guests we had in the office then in grabbed lunch for everyone. When I went back to my office and checked my cell phone I had two texts from Kyle. He said they were admitting dad back into the hospital. He needed blood again and his blood pressure was really low and he was running a temperature off and on so they were worried about infection. I started making calls to everyone to tell them the party was off and dad was being put back in the hospital (on top of a very frustrating day at work in which I worked hard to book several classes that were cancelled within a few hours of their scheduling). It was a hard, frustrating day. I cried to Craig when I got home. I didn't want dad to spend what might be his last birthday in the hospital.

Since we had already seasoned the brisket we cooked it as scheduled Saturday. I invited nose of my lovely friends over to help us eat it. It was great to see them. Sunday was dads birthday. I got up early and went grocery shopping to bake him his cake of choice, pineapple upside down. Too soon after it was done baking I headed up to the hospital to spend a couple hours with dad. Kyle and I gave him lots of presents and I think he enjoyed his bday as much as you can while you're in the hospital.

Yesterday was my birthday. Dad was supposed to get out of the hospital but instead they redid his "torture" scan. He was moving too much for them to get a good read last time. They pushed the bone marrow test off another day. They also decided he needed more blood again. Its amazing to me how much blood a person can lose without bleeding.

This afternoon dad called me. He was barely coherent. I could tell they did the bone marrow test. All I could make out was that the dr wanted to talk to me. He eventually put the dr on the phone. I couldn't understand him much better between my cell phone and his accent. He said he wanted to talk to me either this afternoon before 5 or tomorrow morning. I told him this afternoon would be better and I scheduled to come see him at 3:30. He wanted to talk to me, and my dad, about his long term care. I wasn't sure what that meant but ifigired if a dr was calling me instead of just talking to dad, it couldn't be good. I tried to wrap things up at the office without working myself into a panic attack.

This is what I learned from the dr: dads caner has spread extensively. Theres a large mass in his left lung. Theres a tumor on his 6th rib, but it's spread to other ribs. Its in his liver. Theres are other nodules on his body that they believe are also cancerous, but won't know without doing a biopsy. His protien is about 30% of what it should be. They think the cancer might be robbing him of the nutrition from what little food he does eat. His white blood cell count is high and he's running a lot of fever, but they cant find any infection. Both could be due to the cancer. He could also have some other sort of cancer floating around in his blood that they haven't identified. They aren't sure. They also did not find any bleeding in his intestines (which is good because it means they don't have to do surgery, but bad because we have no explanation for the blood loss).

It all comes down to this: he's too weak to do chemotherapy. At this point we have two options; he can go home and rest up and when's strong enough they will do chemotherapy or we enlist the help of hospice and make him as comfortable as possible for as long as possible. The dr says hospice is only for terminally I'll people who arent expected to make it longer than 6 months or so. They've told us to start considering it.

My brother made it up to the hospital after the dr left. I went over everything with him. He broke down. It's still completely incomprehensible to me. I really can't picture life without my dad there.

Craig came up to the hospital too and we left together for dinner. During the drive Craig was really struggling to say something to me. He finally asked "did you want your dad to be involved in our wedding whenever we get married?" Then I lost it. All I could say was yea. He asked "do we need to move that up? Fastrack it?" I told him no. As much as it breaks my heart because my dad might not be able to walk me down the aisle, I don't want to jump into marriage because my dad is dying. He said it was something he was thinking about today, he didn't want to upset me. I told him no, I know. Thats just one of my more sensitive subjects.

So thats where we are. No decisions made. One day at a time.

I need some chocolate milk...

life doesn't stop

when i first found out about dad, i told one of my business contacts i talk to on a almost daily basis. he at some point has lost his dad and told me something i didn't really grasp at the time. he told me the thing that surprised him most was that life didn't stop. the whole world keeps turning and you feel like it should have surely stopped by now. i mean, you have a crisis to deal with. shouldnt the universe shift a little so you can take care of this big, life altering event. when he said it i thought to myself, of course it doesnt, life doesn't care what you're dealing with. duh.

but now i feel it. sometimes i feel like screaming, don't you remember what i'm dealing with!? emails and calls still pour in at work. i still have classes to schedule and customers to take care of and a team to manage. i still have a boyfriend at home waiting on me to come home for dinner. i still have dogs to feed and take out. i still have myself that i need to bathe and feed and put to bed. and then i have my dad. we have a seemingly never ending list of doctors appointments and tests i've had to take him to. prescriptions to buy. family to deal with. "just in case" arrangements to be made. but nothing slows down so i can take care of the hard stuff. i run on auto pilot through the week. i dont sleep. well, i lay in bed and move in and out of conscious, but i wake up so often i never really rest. and i get up and barrel through the next day.

and i struggle with leaving dad to deal with all the doctors and appointments himself and going back to my life that's not so patiently waiting for me. but he needs me. my family's always depended on me for the important things. i mean, the two appointments dad handled ended up with us having two appointments 30 minutes apart (which obviously didn't work). i helped him find jobs, i made his resume. in college i would come home on the weekends and clean his house and buy their groceries. when he had his own business and secretaries quit or screwed stuff up, i cleaned up the mess and trained the new one. i take care of things. thats what i do. but right now im being pulled in so many directions i feel like im really just disappointing everyone because i can't do enough for anyone.

so in the past week we've met with the cancer drs again and we started radiation. theyre doing radiation on his back to try and shrink the tumor on his spine to make him more comfortable. they also had a port surgically implanted in his chest for when he starts chemo.

last weekend i made a trip over to longview. when my granny died, my dad's mom, i remembered my dad saying she had bought the plot next to her for him. i remember because it grossed me out at the time (i was 11). but i wasn't sure. so we went over to the cemetery where she and a lot of my family are buried. i hadnt been there since granny's funeral. i spoke with the people in the office and she did buy the space next to hers for dad. it was and is a very surreal moment for me. i went by her gravesite and she and my great grandmother both had flowers in their vases. that made me feel good. i'm guessing it was one of her brothers but i'm not sure. it made me feel good to know they were taken care of since i'd never been back. heck, i had to have a map just to find them then.

dad didn't know i went over there and talked to them. i don't like talking to him about anything like that. im trying to be the message of hope to him. its hard to talk about overcoming something while you're talking to them about their funeral. but then on the way to his appointment thursday he said my mom finally called him. he was telling me about their phone call and then he said "your mother told me i have a plot over in longview?". i think i stopped breathing. i just said "what?". he said she told him he had a plot in longview next to his mother. i told him he told me that when granny died. he said he thought her husband had screwed him out of it just to be spiteful. i told him no. its still there. and left it at that. two days before when we were sitting in the cancer doctor's office he told me he was thinking about being an organ donor. i didn't have the heart to tell him i didn't think he could be. i just told him its a great thing to do and that i was one myself. then he told me he just wanted to be cremated. i told him me too. then i told him about one of my coworkers donating her body to science and we laughed about that and moved on. it feels too soon to be having these talks. he's still "too healthy." that seems really final. im not ready to accept that yet.

i did however go apply for life insurance this week. this has made me realize that someone would have to take care of the "final" stuff if something happens to me. anything could happen at any time. it made dad a little upset that he doesn't have anything to leave us with. i told him kyle and i didn't care, all we want to do is spend time with him, that matters more than a check. money makes people crazy anyway.

and then there's my grandpa. when they took dad up to ICU a few weeks ago they asked about his medical history and the history of his immediate family. when they asked about his father he said (and i quote) "he's the meanest person in the whole world and he will outlive me just to spite me." clearly, its a sensitive subject. while dad was in the hospital my brother called to tell him about it (before we knew how bad it was). grandpa i guess knows now and wanted to see dad. we all had to brace for that. tuesday night we met at outback for dinner. craig and i got there first and talked with grandpa candidly about everything until dad and kyle got there. then it was awkward family dinner time and grandpa swooshed back out and down the road, leaving my brother with $100 to help out. i really believe that he cares about dad but doesnt know how to show it. he had to have some degree of concern to even come over. he didn't have to do that. he's just never been the "throwing the football in the front yard, going on a father son fishing trip" kind of dad. dad has the bitter, they didn't want to be a part of my life before so why should they now thing going on with, well, everyone, but he still loves his dad. its just difficult. he cried when grandpa left. i havent heard from grandpa since dinner so i guess we'll see...

kyle and i have been trying to get the word out too. dad has half brothers and uncles and cousins, all people i havent seen in years and years. thank God for the internet! oddly enough most of the "family" i talk to isn't even technically family anymore, they've all divorced my actual family member, haha. they're kids are still related to me so they're still family as far as i'm concerned. also been trying to track down my dad's friends. i called one of his best friends from longview last week. that was difficult. i'm trying to get people together for dad's birthday this weekend. we're going to grill out on saturday and i want dad to have good time with everyone he holds near and dear (or everyone who feels that way about him). of course it may just be us. who knows! i hope its a special day for him no matter what.

last night i got a welcome cancer break. it was my boss's birthday. he's part boss, part friend really. he's a huge blessing in my life, that's for sure. he's the only one in the office who's always stood by me (of the old people) and believes in me. i go to him for advice a lot too. his wife threw him an awesome goodfellas casino night at their new, not moved into house. they had gaming tables set up to play poker, black jack and craps. i played some black jack with craig at first then ryan talked me into playing craps. he got into this game one night when one of our distributors were in town and we took them out to the boats. i watched him learn but i didn't have a clue what was going on. i learned last night though and it was really fun! i'd like to try it for real some time. it was a really nice night!

today craig was off, which hardly ever happens on a sunday, so we both went to church. i love going to church with craig not just because he's my partner, but because he asks questions. i like peaking his interest in church and the bible. after church i told him "thank you for coming to church with me" and he said "of course!". then he really surprised me. he said "i prayed for you and your dad." it really touched my heart. craig is from up north and church isn't a normal part of life up there and he and i obviously don't go very often (because of his work). i've never heard him talk about praying for anything or anyone. it was one of the sweetest things he ever could have said.

so that pretty much brings us up to date. thank you again for all your love and support. you have no idea how much it means to me.