Thursday, December 18, 2008

Heaven after all?

I’m not what you would call a Christian. I believe in a higher power and a spiritual being that watches over us. I used to be very superstitious about heaven and a non-believer. I fluctuate between thinking we are dust when we die and that’s it to imagining a cabin in the sky where everyone hangs out and has a great time to the idea that we come back and get to play on earth again.

Then my dad died. It wasn’t suddenly that everything changed. When my paternal grandmother died in 1996 I started to imagine her up there watching me. I didn't really talk to her, but whenever someone close would die I would ask her to meet them and take care of them. My great uncle and my maternal grandmother died within weeks of each other. I liked to imagine they were up there together, getting to know the lay of the land and meeting everyone. Then my paternal grandfather passed and I know the first thing he did was look for gma Marge, the love of his life.

My dad and I talked a lot about where he thought he was going and what happened next. He believed this was the end. When dad died he was so against heaven I thought maybe he was right. Maybe there isn’t anywhere someone goes and when they’re gone they are just gone. But there is no comfort in that. There is no finish because they are souls and souls have to have a place of rest somewhere. I couldn't stand the idea that it was over and that was it. So I talk to my dad every day. I tell him what's going on and ask him questions. I cry to him and tell him I miss him.

A good friends’ mother died today. The first thing I did was look up and ask dad to welcome her and take care of her however he could.

Maybe I do believe in heaven after all.

Friday, December 5, 2008

Happy December.......I think

I guess it’s December. That's what the calendar says at least. No one warned me about this. When my birthday came I was thrown. I thought at first it was because I had turned 30 and that’s a pretty big day. But then as it got closer I realized that I wasn’t ready for it at all. I felt like my birthday suddenly was in the spring and that just isn’t right. Then I thought about something my sister said. She said to her it was still April because May is when the world turned upside down. I thought about it and have come to the decision that I am living in the same delusion.

It can’t possibly be December. It’s not even May yet. I sing Christmas carols for a living right now and I love it. But I am not in the Christmas spirit. I am thrown by the holiday decorations. Can’t seem to really internalize anything that is going on around me. I am doing everything by rote. Someone tells me where to be and when so I go there. Someone tells me to sing a song so I sing it. Smile and bring holiday cheer. Show up for work and have a good time. But when I look at a calendar and see December on the top, I don’t believe it. Christmas is in 20 days. I couldn’t care less. Christmas doesn’t mean anything to me right now. No cards have been sent. No presents purchased. My apt isn't decorated. I am just tagging along with everyone else's holiday.

And I know this is “normal”. I know this is the year that the holidays don’t register and nothing is going to feel right. Logically I get it. But I am still thrown by it. Everything is harder. And everything hits me harder. And things take longer to process. It is just a very strange time to be alive in this world of mine.

Tuesday, November 18, 2008

30 in four days.

I’ll be 30 in four days.

I have been traveling the internet reading everything from lists of things one should do before completing their 29th year to how they will feel when they’re 30 and what they have learned up to this point. Everyone seems to have an opinion about this milestone. And I’d be lying if I didn’t say that it is freaking me out a little and causing me to take a knee in life and rethink. I am not planning any huge changes or anything. Just taking stock.

Like in Annie Get Your Gun……”What do I find? The things I’ve got will keep me satisfied.”

What I want to know is, why 30? What is it about this particular number/age? I know we are saying goodbye to our 20s; a decade of free thinking and the ability to still be kids. We are saying goodbye to blaming things on our youth and inexperience. We are saying goodbye to having all the time in the world to do anything we want and anything we can. We are saying goodbye to being the youngest person in the room.

But we are saying hello to stable thinking with a free-will and solid foundation. We are saying hello an adult take on life and the respect that comes with it. We are saying hello to the confidence to not have to blame our actions on anything or anyone. Yes, I did get drunk and pass out in the club. Yes, I did completely forget to tell the boss about the time change for the meeting. Yes, I did date someone else because I realized that I don’t want to be with you anymore. There are many things we are no longer willing or able to cover up. Why would I want to?

Confidence is a big one. At this phase of life I am just as confused about where I want to be and what I want to do as I was 5 years ago. I know that I can’t really put off babies and a family as long as I keep saying I want to. Ten years made sense at 22. Now 10 years just seems like I’m tempting fate and trying to cheat biology. And maybe that means I really don’t want kids. And that’s okay too. I have learned that it is something I would embrace if it happened and will accept if it doesn’t. It’s not a goal either way. I am just as lost about a career and where I am supposed to develop myself as I was at 25. But I know that I want to buy a house in the next five years. So the lifestyle I have been living isn’t going to work for much longer. Not many people I know can buy a house and do the upkeep living on the $25,000 I sometimes make in a year. I want a dog so the traveling has to be figured out.

All the changes and the confusions I had at 25 I still have. The biggest difference is that at 30 I am totally fine with it. At 25 I was just trying to be happy and trust the universe will take care of me and make it okay. At 30 I KNOW the universe is on my side and I KNOW I will be okay. I have the confidence from deep within me. Confidence that only age and time and experience can bring.

2008 was not a good year for me. It was the biggest rollercoaster I have ever ridden. And it’s not over. But I see my birthday as the start of something new, even if the calendar doesn’t agree. Loosing my father still breaks my heart every day. I have not dealt with it at all and the enormous breakdown I had last night proves that. I have no idea what the next phase of my life is going to be. None. And that’s a little scary. I can barely get to Friday. But I do know that the next phase will come. Some things are just inevitable.

Cause with the sun in the morning and the moon in the evening, I’m alright.

Tuesday, November 4, 2008

A hole in my heart

I am still smacked in the face every day by my father’s death. I was just walking through the office where I am temping and was hit with the realization again. And it still hits like a physical pain. A startled reminder that he is no longer with me. It knocks the wind out of me and takes me a minute to readjust and keep moving forward.

I miss him every day. I miss him more with every breath. It is hard and painful and isn’t getting any easier.

I am noticing other little changes. I cannot stand plans changing anymore. I want to know where everyone is and what they’re doing. And if they change it without me knowing I get really bothered. Bothered to the point of tears sometimes. This morning my trainer told me he had booked my hour with him to someone else. I almost cried. Except my gut reaction is anger. Anything that messes with the status quo is met with anger as the first reaction. I’m not sure why. I don’t like being told no. I don’t like when things are changed and I don’t like not knowing what is going on.

I also have no patience for people. I want people to make a decision and go with it. No hemming or hawing. No wondering about anything. Just decide and move on. Get out of the road and out of my way if you're not going to drive intelligently. I am a horrible procrastinator and all I want to do is sit and be with my family and friends.

Each day is showing me something new that I cannot understand. I cry more. I am not remembering big things like holidays or momentous things with my dad. I’m remembering the small things, the minutia of the days, that are continuing to throw me. I don’t know why I thought that everything would work out and I would be fine by now. I don’t know why I am forcing myself to get through this. Apparently now is the time I am going to work through the anger of my father. Because I’m just mad and on a short fuse and don’t know how to right it.

I wonder how he would have voted today. I’m sure we would have had hour long conversations about the president and making fun of Palin and arguing about who was right. He would have given his take on the different props and made me see a different way to look at them. He had an amazing ability to shake my foundation and what I thought was the right way to see things. It would have been some great debating.

There is a huge hole in my heart right now. Has been for a while. And I am really not sure how to fill it. And maybe it never gets filled. But I feel it like it’s a physical part of me that is gone and nothing is fixing it. And I’m sad a lot more. And I’m angry. And I miss him.

Friday, May 30, 2008

The breakdown of the two months

Here is the breakdown from a website I visit for lung cancer patients and caregivers (lungevity.org). It will give you an idea of what happened during the time he battled his cancer.

I miss him so much.

2/14/08- Dad diagnosed with lung cancer- lifelong smoker, has history of heart disease (5 heart attacks since 1995)
2/22/08- learned it is also in lower back and ribs, he's unable to walk, losing muscle tone in left leg
2/28/08 Dad is on huge amount of pain meds for the back pain, full strength codine, radiation apt moved up two weeks, MRI scheduled for 3/1 because PET scan showed acivity in the spine
3/1/08 couldn't do the MRI because of the pain, dr worried about acitivy in the brain, dad is still smoking
3/5/08 first meeting with Dr. Gandara (medical oncologist) Tells us what chemo we are starting and gives the go ahead for radiation. We eat trashy mexican food after in celebration!
3/6/08 radiation starts. Dad is in good spirits. Pain mngnt appt. They change over from the fentynl patch to all oxycotyn all the time. Tells us to come back in a week to update.
3/7/08 Rad #2. Physical therapy appt. Orders a walker, we talk about exercises we can do at home.
3/8-3/9/08 Bad weekend. Dad is getting weaker, not able to walk without a shuffle. Spends all weekend sleeping. We start a meditation/slubliminal message DVD for the radiation.
3/10/08 Rad #3 Dad is in a lot of pain, taking a lot of the breakthrough meds. Do the subliminal message/relaxation DVD and he seems a bit better. We get through it and celebrate with greasy mexican food again.
3/11/08 Rad #4 Almost don't make it, the pain is so bad. We get order for morphine from radiology oncologist. Dad continues to sleep but is up every 2 hours to pee. I tell him the caloric intake for him should be 3000 calories. He agrees to eat more, but it remains a struggle.3/14/08 Dad starts panic urination and we have to start using depend undergarmets3/16/08 In the ER for 8.5 hours to flush out the edema.
3/17/08 Dad falls in the radiation center while trying to use the bathroom. Hits his hip hard and we suddenly take a week back in the pain department. He can no longer use his left leg at all and I have to manually lift it wherever he needs it to be.
3/18/08 Last day of radiation. Dr can't explain the bladder problem. We get a prescription for a hospital bed to be able to lie down and reduce the edema swelling. MRI scheduled for Saturday to see if mets have spread to the brain or the spine. Dad is still in good spirits and fighting like a tiger.
3/26/08 we go in for meeting with oncologist. He tells us there is not a good chance chemo will help and we should think about hospice.
3/31/08 Dad goes in for a blood transfusion. Decides he doesn't want to do any more treatments and we call the hospice care. I have a huge breakdown because suddenly it is real. I know that within weeks my daddy will be gone forever. A strange feeling has come over the house. We meet with the nurse tomorrow.
April- month of hospice. Dad loves the attention. He gets a bather twice a week and nurse visits. The team helping us is kind and loving and available. Days are the best time. I spend 20 hours a day with him as his caregiver. We watch movies, eat cookies and sometimes just sit. We have no idea where the cancer is and just assume that any time something hurts, it's the cancer.
May- Dad is getting worse daily. Almost since May 1st he has been heading down a steeper slope. Pain is really bad and dad calls his bed a torture chamber now. Is awake less and less. Is drowsy all the time. He weighs in at 160- he has lost 40 lbs in 2 months. He is a walking skeleton. I worry time is running out.
5/11- Dad isn't waking up. Moved him to Methadone four days ago and we can't figure out if it's the disease or the meds. He doesn't respond and isn't able to get out of bed. A catheter is inserted and the nurse tells us she thinks this is the disease and we are looking at around a week. Dad's breathing is labored and he is unable to communicate.

12 May 2008 Paul S. Bjorklund passes away in his home with his daughter, his brother, his best friend and his girlfriend at his bedside.

And then he was gone

Paul S. Bjorklund
24 July 1955-12 May 2008

Monday, May 12, 2008

The End is Coming

I feel like I am in a dream. I truly feel like someone is going to come in and tell me this was all a joke and he is fine and it was just for fun. Or something. It feels completely surreal. I was staring at the wall yesterday thinking "this can't possibly be my life."

Dad is in the final stages. It happened so fast. When we started hospice the nurse was really nice and said that he would deteriorate slowly and then suddenly it would be a drop drastically. And that's what happened. He dropped. Now he is lying in bed struggling to breathe. The nurse said it is his brain unable to make his lungs work anymore. That slowly he'll just stop breathing at some point. I'm watching him right now and every four or five breathes he'll stop and I'll stop and wait for him to breathe again. It's an awful waiting game.

I can't seem to move. Getting up to go use the bathroom or get something to eat is time away from him that I just don't want to take. I can't take. I can't leave him. I'm paralyzed in this chair.

I can't believe that this is it. She said he won't last the week. And I want to believe her. I mean, on the one hand I want him around forever. But this isn't him. He's unresponsive and not really here. This isn't dad. He's still in there mentally, but even that is up for debate. Who knows how much he is awake or asleep. I know that hearing is the last thing to go so I know that he will be able to hear us for the final days. But I've said everything. I am at peace with where we are.

I don't want him to go. At all. But I know he loves me and I know he is proud of me. He knows that I love him and am proud of him. There is nothing unsaid. There is nothing undone. I am okay with when he decides to leave us. Is that awful to say? Awful to think? He has fought such a good fight and I just want him comfortable and happy.

No idea what's going to happen after he goes. If he passes this week I'm going to head to LA for the weekend just to sleep and regroup. Then come back and clean up his office and put the memorial together. Nothing is in place at all for the business side of it. And I'm angry about that. He didn't leave a will. He didn't sign a power of attorney. As his next of kin I will be able to do most everything neeed, but I don't want to fight his girlfriend and I have a feeling I'm going to have to. I just want this to be done so I can mourn and live my life. I'm done being around her. I'm done living in her house. And yet we have reached a point of understanding and there is a sick part of me that will miss her. For all the shit she has done and all the bitchiness we have lived through together, I will miss her and her crazy ways. Because he loves her. And she is part of him.

I miss him so much. I think back to the past two months and the things I am going to miss are astounding. Watching 24. Him sitting there trying to decide what movie he wanted to watch. Watching X-Men and Batman Begins and MIB and Austin Powers over and overbefore we got television in the room. Eating milky ways. Our morning walks. Laughing. Sitting out in the garage playing nintendo while he sat in the sun. Talking about life and the choices I have to make. His smile. His laugh. His ability to moderate the tension in the house. His love. Holding his hand as we sat and watched TV. Him rolling out and checking the mail every day. The smile he would get when a new netflix would come in. The look on his face when we would reach the end of an episode and he would say "dude" and I would ask what was next and he would say "the next one. Let's get on it." Watching Gilmore Girls every morning and then talking about it. Him being worried about Rory and Logan so I would tell him that they end up together and everyone is happy. Talking with him about Alias and what was going on because he couldn't follow the plot line. Trips to Jimboys Tacos and Leatherbys Ice Cream. Him telling me he loves me, out of the blue. Him reaching up to get a hug. Him holding on tight when we did hug. His gripping my hand as we sat together.

There is so much. So very very much. I just want to remember how it feels to have him alive next to me. He is a good man. Kind and loving. The world is losing one of the good ones.

Sunday, May 11, 2008

Even as he sleeps

Dad is sleeping right now. But it is not a "yeah" sleep. It's the "he might be gone soon" sleep. We can't tell if it's the meds that have knocked him out or the disease. He is snoring but his eyes are in slits. What is he doing? He keeps waking up and trying to sit up. He wants to go outside and it breaks my heart that we can't let him. He's just too weak to do anything. His breathing is shallow. His eyes are dead and don't focus. This is just awful.



Yesterday was awful. The meds rendered him completely incoherent. He couldn't speak and when he did it was gibberish. Nothing he said made sense. At times it was funny because he was so certain that what he was saying was right. But then it got frustrating. I kept repeating back to him what he had just said and he would look at me like I was an idiot. He was confused. Couldn't remember names of people or where he was. And he was mad. Almost fell down in the morning. Thankfully I was there to catch him, but it was scary as hell.



Cristin and Emily came over for a little bit. I think it scared Emily. She put on a strong face but I know she was bothered. She walked in the room and immediately sat down next to me and wrapped her ams around me. She was just there for me and I found comfort in her energy. I feel the same way when Cristin comes over. I just feel better when she's there. Dad lives with his girlfriend and she and I have been going through this together, but I don't feel connected to her at all. I feel like we are teammates in this and we are rooting for the same thing. But I don't connect. And today I feel even more alone. This strange feeling of wanting everyone around and yet wanting to be totally alone.

We have no idea what this means. He doesn't have all the signs of death coming. Just several. The blood hasn't settled, which apparently means he is still okay. But this is damned near impossible. I am being tested every day with patience and ability. I have no idea if what I'm doing is correct or not. I have no idea what to wish for, what to pray for. I just know that I don't know. I am starving but can't stand the thought of food. I'm exhausted but can't sleep. Iam sad but can't cry. I'm scared and I can't move.

Just as new parents wish for an istruction manual for babies, I wish there was an manual for death. It is totally the unknown, the only certainty being that he will die. We all will die. He doesn't have anything in order, doesn't have a will or power of attorney. I feel huge responsibility to take care of his things when he is gone. I don't know how I'm going to take care of Sylvia and make sure she is set up. I will stay here to get the bed put back in and the house back in order. I want to help her go through his things and make sure she is okay. But at the same time I just want to run away and bury my head in the sand.

I thought I was lost at the beginning of this adventure. Now I feel like the changed the game and I am lost again.

Tuesday, May 6, 2008

The tears won't stop

Last week the tears started. I was sitting at my computer in the middle of the night, playing a game online and listening to dad breathe. Sitting up to take care of him when he needs. Relishing the time I have with him, even if he's asleep through most of it. And suddenly I started crying. Not sobbing, no hiccuping or heaving. Not the kind of crying I have done only twice since his diagnosis. Not the kind of crying where you can feel your heart breaking and can't get into a small enough ball in an effort to make the pain go away. Just these tears that started to fall cleanly from my eyes. Nothing triggered it- they just started to fall. And they wouldn't stop. Haven't stopped since. Even as I sit here typing this there are tears running down my face.

Little things tip them off. Sometimes it's a memory. Today I remembered how he used to sing to Emily when she was a baby. He would sing "So talk to me....like babies do." I thought it was the cutest thing in the world. Thought about the endless dinners where we played grossout in an effort to make someone lose their milk through their nose. Or laugh so hard my mother would choke on her corn. Yesterday I thought about the conversations we would have about taking care of myself physically. In high school when I was dancing a lot he and I would talk for hours about not starving myself and remembering that I was an athlete. Sometimes we would wake up before mom and Cristin and we would go on a run around the neighborhood before the sun came up. Then return home and split a smoothie with a bagel. The day before that I had a flash of when I had TMJ my junior year of high school. The doctor told us we had to keep it iced. I remember sitting on the floor of the living room, leaning against the couch with my head wrapped in an ace bandage like a brain patient because my dad said it would be easier than holding the ice up to my face. We laughed at me for hours. There are so many good memories to pull from. And for that I am so truly blessed.

Sometimes its thinking about the future. The things he won't be around for. This christmas. My wedding. I never wanted a wedding day where the prevailing thought was that he was up there watching and would be so proud. I want him to be there with me physically and he won't be. My babies. They'll never know him. He'll never sit with me in the hospital and tell me how proud he is of me. He'll never hold them in those strong hands. He won't be around to call when my son has questions and needs guidance. Or when my daughter is pissed at me and needs to vent to someone, only to have him be able to explain to her where I am coming from because he knows me so well. Emily's passages through life. Her graduations, college life, soccer games, her wedding, her babies, her victories and defeats.

Lately it's the little things that happen every day that I know I am going to miss more than anything. The sound of his voice calling me sweetheart. The look he gets in his eyes when he sees me. The sound of him telling me he loves me. The feel of his skin. The sound of his breathing. The way he lifts up his arms when he wants a hug. Sitting next to him and watching "24". Or "X-Men" for the fiftieth time. Holding his hand and feeling him hold it tight. Knowing that we share a connection I have never had with anyone and will not have again. Just the way he does everything. He is amazing and kind and wonderful. Last night he woke up and we had to change his clothes. In my haste to turn the light on I knocked over my glass of water. After we laid him back down he asked if I needed help with the mess. And he was serious. He worries about everyone but himself. That is amazing. And wonderful.

I love my father more than anything in the world. He is amazing. He is half of me. I am so proud of this man. And so very very sad for what is going to be lost when he goes. Because even if I had everything he had ever owned, in an effort to keep him with me, it's the things that will be forever lost that I mourn the most. One day soon the oxygen machine will be turned off. The bed will be empty. The sheets and towels and pillows will be put away. The carnation shakes will not have to be made. The plastic cups will be thrown away. The pills will be tossed. Everything will end and he will be gone. So the tears come. They've been falling the entire time I have been writing this. They come without warning. They are hard to stop. And maybe they're not supposed to stop.

Monday, May 5, 2008

A Different World is Coming

I didn't know whether to say a different world is coming, or a different world is here. I don't know what it is but there was a shift in my thinking this week. It's like the truth suddenly hit me.

Thursday, May 1, 2008

No more status quo

It's 1am and I am sitting at my fathers beside. It can only be called a vigil at this point. I wait for him to wake up so we can quickly get him out of bed so he can pee. Then he sits there and doesn't have to. But I wait. He stirs often. There is a rattle to his breathing. They call it the death rattle. It's the build up of flem in his lungs that he is trying to get out. He says it doesn't hurt him. Just annoying. He is still smoking during the day, but now he mostly just sits in the wheelchair and dozes. I don't think he really smokes so much any more. It is impossible for him to get comfortable. He shifts in his sleep, trying to find a way to ly that won't hurt so much. With every shift I stop what I am doing to see if he needs anything. This will last another few hours. By 5am I usually ly down on my makeshift bed on the floor and try to rest for a bit. But inevitably he will wake up within the hour and the day starts.

I didn't realize until tonight how much I miss the status quo that has been the past few weeks. Morning meds at 6am then a nap unil around 9. Hang out outside, talk, laugh, maybe go for a short walk. Then back in bed to watch some more television (lately we watch Gilmore Girls together which I love and he laughs at). There is another nap around 4pm right before his girlfriend comes home from work and then I would head out to the gym. I'd pick up something for him to eat, whatever he was craving at the time, get home, have some food and then at 9 she would go to sleep and we would watch another movie. Then he would crash out around midnight for a few hours, I would sleep as well, off and on until the morning when we would start all over again.

Now everyday is different in it's own way. He rests more. Is alert less. He longs for the perfect nap and dozes more throughout the day. I am more hesitant to leave him. I don't go to the gym now. I stay up all night so my three hour window of "my time" is now spent trying to make up on some sleep. He feels good less of the time and takes more morphine during the day.

He is getting worse daily. And it's really hitting me today. He weighed in at 160 this weekend. When he was diagnosed he weighed 220. Thats almost 60 pounds in 2 months. He can't stand up long enough to pee. He doesn't eat anything now. Just drinks the shakes with his pills.

I know the end is coming. I have no idea when. But I know it's closer than it was a month ago. Probably closer than we are ready for. And I should be happy to have had this month with him. I have had the amazing blessing of time and sharing and love. He knows I love him. I know he loves me. We have a connection I have never felt with anyone. He is truly half of me and I am a better person for having him as my father. I just want his suffering to be over. And that's what this is. Suffering for him. He fights his body all the time and is in pain all the time. He still laughs and still makes jokes. The man that he is can still be seen in the way he approaches things and talks with people. He is so loving. He is so kind. He is the best man I have ever met.

The sour smell of decay is everywhere now. He doesn't smell like himself anymore. I used to love how he smelled. Fresh and clean. He hasn't brushed his teeth in days. The dry mouth makes the skin around his lips chapped. He is shedding skin from his body like a snake. It is like I am watching him waste away. And that is exactly what I am doing. And it is the hardest thing I have ever done. And I scared for what is coming. No, scared is the wrong word. I'm nervous. Nervous this will continue for longer than we can take on. Nervous it will be another month except it will be a month of wasting even faster. Nervous for the day he is bedridden and no longer able to take care of personal business alone. Nervous for the day he stops responding. Nervous for the moment he leaves us. Nervous and scared and sad. And everything else one can think.

I have been crying this entire blog. I'm sure it's a mess of unfinished thoughts and half figured out ideas. I just can't wrap my head around the fact that he's dying. He's leaving. It just feels unbelieveably unreal to me. Like something in a dream. Like I'll wake up from all of this and find that he's okay and thriving. That's how it feels today. Like a dream I am not really part of.

I am just going to miss him so much. It is immeasurable.

Sunday, March 30, 2008

How can I not forget?

I am so scared I am going to forget him eventually. I'm going to forget how he smells. What he sounds like. How it feels to have him be a live next to me. I just want to make sure to get the best out of him that I can while he is here.

I can't seem to stop crying. I cried in front of him for the first time since the diagnosis. He said that now is the time to cry. I don't even know what to do with myself. Can't seem to be more than five feet away from him. He's sleeping in the bed behind me and I just want to be awake and soak in all of him. I am running out of time and I don't know what to do with myself. I just know the end is coming and that scares the hell out of me.

Hospice care and the attached emotions

Dad is really bad off today. I am sitting in the room with him as he sleeps because I can't be too far away from him. It's as if I can feel the end coming. He is in so much pain. He is back to the pain being so bad he is crying. My heart hurts so uch for him. Hospice is starting this week. I'm sure of it. Dad keeps asking for it and I'm sure that is the next step.

Last week we had our appt with the oncologist. He pretty much said the cancer is moving too rapidly for anything else to be done. Said chemo will only hurt him and he would end up dying of an infection or virus because his white count would be so bad. Radiation offered only a touch of help so no more of that. And the clinical trial is a no-go. There was he possiblility of a different type of pill for him, Something to arrest the development of the cancer so it stops spreading and then we could go in for chemo. But I don't think he is going to get there.

Tomorrow we are going in for a blood transfusion. He is severely anemic and the doctor wants him to get some new blood. I hope that a rush of new red cells will mean that he has a few more good days. I'm a little scared of what a transfusion is and what it will do to him. But I am keeping good thoughts and a bucketful of hope.

I can't stop thinking about everything we have shared. Everything we have done together. All I want is a little more time with him. I suddenly want longer conversations and an extra five minutes every time I saw him. I want back the nights of debates and the big bear hugs. I don't want him to die. I'm not ready. I know that is a selfish thing to think. And I know that his passing is going to leave him in comfort and ease his pain. But I want to have him here. I know that when he's gone, he's gone. Forever. And that is something I am not willing to wrap my head around quite yet.

Friday, March 21, 2008

Overwhelming

That is the only word I can think of right now. Overwhelming. Overwhelming sadness. Overwhelming pride. Overwhelming happiness. Overwhelming love. Overwhelming devotion. Dad is sleeping right now and Cristin just left. She and Daniel came over for a little while. I could tell how bothered she is.

Crap. There is so much to talk about and yet all I want to do it fix it. I'm sitting here in tears because I don't know what else to do. I don't know what is going on with him. I know more than anyone in his life what he is doing and what meds he's on and how he sleeps. But I don't know the pain. I don't know what he's thinking. I don't know what he's fighting. I don't know what to do with the signs I see all the time, things that could be making him worse. Are they just side effects? Are they signs that he is getting worse? Are they just the dowfall until he starts to get better?

What if he doesn't get any better? What then? When do the treatments stop? When does he go into hospice? I see the man that is my dad and I see the mental strength. I see the fight in him and I know it is frustrating the hell out of him to not be able to fight this. I know he doesn't want to give up. I know he wants to fight this. I know he's scared of the chemo and the MRIs and the scans and everything he has to do.

What I don't know is how long. What I don't know is what I am doing. I just want someone to come over, look at him and say "yeah, he'll be fine. This is just a setback." And that isn't going to happen.

Wednesday, March 12, 2008

As He Sleeps

Dad is sleeping right now. And I'm trying to wrap my head around the idea that it is Wednesday already. Yet at the same time I can't believe it's only Wednesday. With the time change there are a few clocks here at the house that have not been turned. Every time I go into the office, which I am using as a clothes room, the clock says it is an hour earlier than it really easy. I have to do the math for the actual time then I have the thoughts, "I wish it was still 6:00- I wish I had that hour with him still."

We are in the middle of the radiation treatments. Talk about not fun. Every weekday for ten days so we are in this until next Wednesday. They are short appts but they take a LOT of energy from dad. It really knocks him out. Dad is in good spirits and keeps talking about how we are kicking cancers ass. Says he is in so much pain because the tumor is pissed we brought such a big stick to fight with. He still makes jokes and has a sharp mind. I truly just enjoy spending time with him. It is hard to watch, but there is nowhere else I would rather me.

Days and nights are hard. He only sleeps about an hour at a time. I try to crash when he does and get some rest. I find that the only time I am able to completely focus on me is when I go for my daily run. I try to hit the gym once a day for an hour when his girlfriend comes home from work. It is an interesting time battle.

I feel so helpless. I can do nothing but be here and force him to eat. And love him. Every day I find that I love him more and couold not have asked for a better father. He is supportive and kind and smart and funny. He never questioned what I wanted to do and is always there to bounce off ideas for different ways to do things. He is such a great guy and I just hate to see him in so much pain. That is the hardest part of all.

Monday, March 3, 2008

Stage 4

The worst has been confirmed. And I think I am still in shock from it. A life I saw with my father in every minute has been reduced dramatically. I am still trying to not think of it as a death sentence.

The Kindness of Strangers

I don’t know how people in the “olden days” did it. How did they lead such a solitary life? How did they not interact all the time with everyone and talk about everything? I think it is one of the great blessings of our generation to be able to be contacted at any moment and be available when we want to be available. I love my blackberry. I love getting my email when it arrives. I love that my friends can reach me. I love being able to answer questions right when they arrive, not waiting until I log on to a computer or can reach a phone. I love texting. Last month I sent and received 1800 texts. That is a LOT of texting. But I was involved with everyone and people know they could find me.

I have a friend who is fighting in Iraq right now. She sent me a great letter and one thing she said is that God will send me angels to help with this time. She is very correct. The internet is another way to stay involved with everyone. I have found a new side of it with my family’s new challenge. Suddenly the world has opened up and I am meeting people every day who are going through what I am, who are going through what my dad is, who have already gone through it and are available to tell their tales. I signed up for a forum on a site that I love, lungevity.org. It is awesome and the forums are really open and abundant. I posted an “I’m New Here” post on Friday. By Monday I had already received 5 responses to my post. Three of them were people who were in the same boat and were there to talk about it. I felt a rush of compassion for these strangers. People who soon will not be strangers at all.

I love that my father can get a hold of me at any time. I love that my sister can text me from work and vent without having to interrupt anything. I love that my friends can email me requests and I can answer them immediately. I love that I can do work from the road and I love that I am always available.

So say what you want about being too available and our lives not being our own. There is nothing more important to me than my family and the fact that they can get a hold of me any time they want, well, I would trade that for….well almost anything.

Thursday, February 21, 2008

The New Hat Dad Wears

I wonder if a day will ever pass when I don’t think of my father having cancer. It’s an interesting shift. Kind of like when you become a parent. No matter what happens to that child, you are forever a mother/father. Or when you become a sibling. Or get your college degree. There are certain titles you have, whether you use them or not. Being a cancer patient must seem that way too. No matter when he beats this, he will forever be a cancer patient. That’s a hat I am sure he never intended on wearing.

Dad is in good spirits. Have talked with him a lot this week. I like it. I like being connected to him.

I love talking as much as we do. He went to a New Patient Orientation on Wednesday. There is a group at UC Davis Medical Center called "Legacy" which is a support/information group for lung cancer patients. Turns out it wasn’t only for new patients, which turned out to be a better thing for him. He met patients that have been battling for years and keep kicking. He met people who fought lung cancer, beat lung cancer and still come to the meetings for support. One woman has been going for the 5 years since she's been cured. He met survivors and fighters. And I have noticed a difference in his outlook, even in the last two days. I was worried about depression but I think as he is able to get a "game plan" for his health he is able to see the brighter side of this. The hope that is there.


Today he had two apts for his back pain. I am eager to hear what they are going to do about it. He is popping so many pills and I hope that at some point we will all be able to find something non-drug to help. Apparently I need to get online and google up some information.

My sister had to put her cat down yesterday. That just added to the suckiness in her life. I worry about her a lot. Not that she can’t cope with everything that is coming at her. It is just so much and I hate to see her struggle so much. I care for her deeply and want her to be happy. I think she is on the road to that and I wish I could help.

The short version of the story is that Dad is in better spirits which makes me smile and feel better for him. I like hearing the lilt in his voice again. I am not going home this weekend. Am staying in LA to work and get some things in line. It’s fine. I mean, I miss everyone terribly but we are good for right now. Dad is fine, Sylvia is fine, Cristin is fine, Emily is fine…..okay we’re not “fine” but no one is struggling to get through the day. I figured I might as well save my travel time for when we can’t see past tomorrow.

Thanks for listening.

Tuesday, February 19, 2008

Back at the office

I am sitting at my desk back at Disney. Whoopee.

Strange to think there is an entire business that needs to be run and I have my part in it that still needs to get played. I have to set the meetings and send out the letters and moderate the phone calls. I have to hold up my end of the world down here. My boss asked how my dad was. I don't think he quite knew what to say when I told him. I think that is how a lot of people feel. They just know that is sucks and they don't know how to say something to make it not suck. I am quickly learning who to talk to and who to avoid. There is a guy I know down here who's father passed three years ago. I thought he would be able to give a little support and some insight to how he handled it. not so much. When I told him Dad was sick he had the cavalier mentality that all old people die and it is just what happens.

But he's not old! He's only 52 for foot's sake. He is young enough to fight this and make it through. I don't have granduer ideas that he will be around for decades. That thought was killed the moment he told us about the spot on the scan. I knew at that moment that I would be lucky to get another six years of time with him. That thought stops me in my tracks. I don't like to think about that side of this illness.

I don't really feel like doing anything other than what has to get done. Is that normal? The idea of watching a movie, cooking food, going to the store, talking to friends, organizing my room, taking a shower.....nothing but the essentials seem to matter. Although some people would argue that a shower is essential. I will go for a run tonight. A nice long run where I can sweat out the chocolates I can't seem to stop eating. And the coffee. No more pizza though. I realized that I spent $100 on pizza last month. That's not smart. For my waisline or my wallet.

Everyone in the family is worried. No one wants to step on toes and say something that is going to make the other person worry more. I don't want to dump anything on dad, but at the same time he is the guy that I take my problems to. He knows the guy drama. He knows the work issues. He know me better than anyone on the planet and is the strongest opinion I want. So I have to get past thinking it is burdening him. Cristin doesn't want to worry me at all so I know she is going to keep her feelings about everything inside for fear of adding to my worries. That can't continue. She is the only other person in the world who is going to feel what I feel. She is the sister that is going to be able to understand when I tell her the deep fears I have. She is the one closest to having the same experience I am going through. Emily is going to experience this loss in a completely different way. I can't even begin to think of what is going through her mind.

When I was at Raley's the other night I saw a dad and daughter walking around shopping. He was in a suit and tie, she was in soccer gear with her hair pulled up. Reminded me of dad and me. I was hit with about a million different thoughts. Realized that dad might not be going to Emily's HS soccer games. Remembered the times after a volleyball game when we would stop for pizza on the way home. Remembered all the little things that I guess will just become part of living.

I have never been one to remember everything. Cristin is amazing at that. She remembers things that I have totally forgotten. I'm glad she does. It makes me smile that she has this whole wealth of knowledge that she can pull from. It makes for interesting dinners. But lately I am getting flashes of things that I had long ago put into my memory. Nothing huge. Nothing life altering. But brilliantly clear images of my life with my dad. That is a really cool thing.

No more alcohol. No more dairy. More flaxseed and no more processed food. Dad is on an eating regime and I am joining him. There is so much evidence of a whole foods diet being a way to kick this in its ass. Now if he would just stop smoking......but that's a different blog.

Thanks for listening.

Friday, February 15, 2008

Home from the hospital

Dad is home today from UCDavis hospital. His back is really bothering him. I have never seen him in so much pain. He winces with every step, almost with every breath. The problem with back pain is that it tends to take over everything else. You can't do anything without pain so everything becomse depressing and not worth it.

I don't really know how to help. After watching Larry go through a little of the same pain I know that it is a deeply personal pain that just makes life miserable. I am here for the weekend and doing everything he asks for. I want to just take a wand and make the pain go away. I want to be able to do something. I feel helpless. And I have a feeling this helplessness won't go away.

Right now we are sitting, he's lying, in the living room. We are trying to keep track of all the appointments he needs to set up and get to and all the meds he needs to take. It's overwhelming. I can't even imagine the burden he is carrying.

On the way home last night we stopped by Raley's to pick up his newest regiment of pain pills. He mentioned a feeling of dejavu from when he was in my position with his mom as she was going through all the hospitals and medications. I remember the numerous trips he would take down to Las Vegas to be with her and walk grandpa through everything. He managed to balance his life here, work and still keep us happy and busy. He said he and grandma were able to laugh about things and have a lightness about it. I don't know that I will be laughing any time soon. He said he felt guility that all this was being dumped on me and having to take care of him. I told him that guilt could not come in to what we are fighting. There can be no guilt or apologizes or anything.

I don't know how coherent these blogs will be. Today I am not crying. Today is about getting appointments set up and things in line. Today is about making sure he's comfortable and eating. Today is about making sure when I go back to work on Tuesday he is set up and doing okay. This weekend is about making sure Sylvia will be fine when I go back during the week.

I know I will come back here. I know I will be quitting my job and spending the better part of the rest of the year up here. There is no way I can stay so far away. Emily needs us all around. Dad needs support and care, someone to drive him all over and keep track of everything because he can't see through a fog of morphine. Cristin needs someone to watch Daniel so she can have time with Dad. Sylvia needs support so she doesn't feel alone. This is something we all will be fighting together and I can't see what a job has to do with anything. I am not jumping the gun yet. I am not running back on Tuesday and giving notice. There is a lot of waiting still to happen and paychecks to make.

Wow- just the crappiest waiting game I have ever played.

Thanks for Listening

Wednesday, February 13, 2008

A Map of the Land

This blog is a way for my family to stay in touch, vent their feelings, post interesting things they see online, post information, ask questions.....really just anything they way to do. And for our friends to be able to go on this journey with us.

Let me introduce you to people who may stop by. Plus then you'll have an idea of who I am talking about. I am the eldest of 3 girls (me, Cristin, Emily) and one step-sister (Emily Jo). My mother, Marianne, is a teacher who got married to Larry in 2005. Cristin married Andy in 2004 and had the first grandbaby/nephew, Daniel, in 2006. There is also family in Washington State, Colorado, Florida, West Virginia, and all over California. We are a close bunch who write often and keep in touch throughout everything.

My father, Paul, is the reason I started this blog. He lives with his girlfriend, Sylvia, and their two cats. He is a lawyer and owns a lighting company. He is a lifelong smoker and happy drinker. He loves having a good time and is a good person.
He is the love of my life and the man I look up to most.



This past weekend Cristin and I sat down with him and Sylvia and were told he had found a spot in his lung about 4cm in diameter. Something that size can really only be one thing.

Cancer.

Scary, sad, depressing, frightening, pissy, frustrating, angry, awful, mean, unknown......cancer.

Two years ago we lost our grandmother to pancriatic cancer. That same month we lost our great-uncle to cancer. Both were fast and painful. Both were sad and hopeless and unnerving. That is really all I have to go on when I look down the path of lung cancer.

We don't know what "type" it is. We don't know what stage or best treatments or anything. We don't know if it has spread or if it's in more than one place. Hell, we actually can't confirm that it is even cancer until we get the tests back next week. It's just what we all worry it is. We don't know what to do with the small amount of information we do have.

We do know that we have to fight. We have to be positive and we have to continue to live. This blog is for my family to come and vent and cry and say things that are too hard to say in person. I am hoping that by posting here we open the lines between us. It's also a blog for other people going through the same thing. A blog for friends to come to when they want to know what is going on but don't want to feel like a bother. A blog to offer a real look into the awful and amazing thing life can be, all at the same time.

I am scared. I am pissed. I am sadder than I have ever been. I am hopeful. I am worried. I am every emotion one can possibly be right now. it's overwhelming.
My father is an amazing man. He is kind, loving, generous, smart as a whip, funnier than anyone I know, open, tolerant, stubborn, gentle......pretty much all the good and some bad. He is a fighter and he is an honest son of a bitch. Nothing gets by him.

And I refuse to let this get him without a fight.

Thanks for listening.