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

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.

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.

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.

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.

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.