Visits, Worries & Music

A while back I figured out a new way to relieve stress. Maybe I already wrote about it. Feeling to lazy to look thru the blog and check...

I wrote down all of my worries. They are in my purse. When I feel prepared to worry, I pull them out. It seriously works. If I start to worry, I remind myself that those are in my purse and I have to pull them out to worry about them, and then I stop worrying.

That and I started chewing my nails again. In this way I can relate to a smoker who is trying to quit. I haven't chewed my nails for months, and years before the time I slipped up last. Ugh.

I went for a visit to see my parents a teensy bit over a week ago and got back on Tues. It was a really good trip. It was also a really sad trip. Dad has definitely lost weight, gotten weaker, gotten sicker. It breaks me. I finished up a memory book for him before my trip and gave it to him while I was there. It was an emotion/time-consuming project. I started back in May and got it done just a few days after Eddy & I were engaged. First of all, it had to be "perfect". Secondly, it made me cry everytime. It was well worth it tho. I think my Dad really appreciated it. It was really special and focused on our lives together as father & daughter throughout the years. And I always feel healthier emotionally when I have been able to express something important to someone in a well thought out way.

There is no real news when it comes to his health; they don't even really have a baseline in terms of the cancer growth & spread. Since he has started the chemo after the trials didn't work, he has not had any scans. He now has tumors in his kidneys, stomach, liver, lungs, on his humerus (the arm bone that meets up with the clavicle at the shoulder area), and he's having similiar bone pain in his hip, so tumors are suspected there. It could be elsewhere, but we won't know until his scan at the end of the month. His last round of chemo is on the 28th and he should have some more prognosis info on the 6th of October. Once we have that, I will start putting together my plan to be there with him. Like I told my parents, there are no easy answers. I have a job that I like, a comfortable home with the man that I love, my kids are settled in at their schools, but I have to prioritize as life comes at me. I can and will make sacrifices (most temporary) in order to spend this last bit of time with him. Because if I don't it will forever hurt me. It is something that I need. I need to be there with him and give him all of the love & attention I can. He is very selfless in this and doesn't want me to shake up my life. My life will be shook up. He is my Dad, one of the biggest loves of my life. I am losing him & we will have to say goodbye. There just isn't any easy way to do that.

I called Dad tonight; I hadn't talked to him all day. He asked what we were up to and I told him that we had all just gotten back from the park; Cole riding his bike, Lainie her scooter, and Eddy and I walking and then some playground time. He said, "Enjoy it while you can." Those words are so very important. I'm realizing that time goes on-- with me or without me. When my time's all up, I want to know that I have spent it with the people that I love. That I have spent it in the moment and with my full presence; mind, heart, and body.

My Mom is struggling. It is a hard thing to see, and it is even harder feeling that she won't allow any help in dealing. It is frustrating. But my Mom has been who she is for a long time. I accept her and love her for her. Back when she was drinking heavily when I was a teenager I asked my Dad why he stayed with her. He said someday when I knew what love really was I'd understand. It's true. I can love her for who and what she is, or I can struggle and drain my emotions to figure out how to fix her and her problems.

Life is not easy. I'm not even to 30 yet and there have been many heartaches. I'm sure there will be more. I wish I knew a way to avoid it, but I don't. I will say that given my history in dealing with things, I am dealing pretty well. I will also say that I am grateful for all of the special people in my life. They are what make trudging thru and wiping many tears worthwhile.

Back when Dad was diagnosed he made a compilation of songs (6 cds worth) and named it "The Requiem". This is one of the many ways that we are alike. Emotions go hand and hand with music. He is expressing how he feels, his thoughts, his foresight, his memories. I listen and I find new messages from him everyday. These songs have become really important to me. There are many songs that I can see clearly how the lyrics relate to his life, there are others that I haven't yet figured out. Some of my favorites so far:

The Messenger by Daniel Lanois or Tea Party
I am inclined to think that the version my dad gave me was done by Daniel Lanois, and while I even think that the main Jeff singer guy of Tea Party is hot, the version done by Daniel Lanois is the best. The lyrics make no sense, but complete sense at the same time. It is so beautiful. I think of two people in a relationship just coming together out of painful previous relationships. Scorned and scared they fall in love apprehensively and almost pained, they finally realize that what they have and how irrelevant their pasts are to their future. My Mom and Dad were both previously married. I think both were considerably hurt by their first spouses.

Far, Far Away from my Heart by Bodeans.
Okay, so this video is NOT Bodeans. This totally cracks me up, but when I feel like I want to make fun of him I think, "hey this guy appreciates good music, I should cut him some slack" The lyrics from this song are beautiful and represent my dad's situation in many ways. "The feeling's coming on again, its kicking its screaming deep inside me. I'm so tired of fighting with myself." This sounds so much like the cancer. "I'm feeling more and more like less and less." Defeated: "And now I'm staring blankly at the TV set." "Far, far away from my heart" is about feeling that his loved ones were physically too far away or otherwise unreachable. Like his awful daughter that moved away from him to Idaho.

Watermelon in Easter Hay by Frank Zappa
An absolutely amazing song. Just get past the whispering in the beginning and you'll see what I mean. The instruments are all amazingly working together in this big happy love-cloud of a song. It drives Eddy crazy. He says it is the same chords over and over. I think my Dad likes it because it's awesome.

More songs to come.

I'm a dirty blonde that's living in the moment.

I got rid of the highlights in my hair and went (or attempted, we'll see) back to my natural darkish blonde. Cole said, "I like your black hair mommy." I said, "No, it's Dark Neutral Blonde." He said, "Yeah, dark neutral blonde." I'm sick of keeping up on the roots of the highlights.

I'm also living in the moment. I can't over explain that one or I will be living out of the moment. It helps.

My dad was taken off chemo. It was causing some bad bleeding. Not sure what that means, maybe I'll know more after his next Oncology appt on the 31st. At this point, I know I can't expect good news, so I'm no longer clinging to his appointments and medicines and doctors for reassurance. There is no reassurance in his illness. There IS reassurance in his voice, his love, and our memories.

I'm working on a memory book for my dad. I cry every time I work on another page, but it is sort of a relieving cry. It's for me just as much as it is for him. I'm slowly grasping this. Slowly processing. It's so painful. But, it's life. No one ever asked me to set the rules. There's probably a reason for that. It is wonderful to think about all of the memories I have with him. I remember my mom telling me that when I was born my dad was crying and said that she could never take me away from him. She said she wouldn't, and I imagine that is when his heart opened and trapped me in forever.

It's so true that feeling joy is only possible by feeling sadness.

I am engaged!! I'm so in love. Eddy is the person I want to wake up with everyday of the rest of my life. He is mine. Like he was special-ordered. Like he is white cake, frosted with butter cream frosting. I know there is a reason my life is so crazy right now. It's because he is here to love me through it. My ring is beautiful, and it represents something that is so important to me, so close to my heart-- which makes it even more beautiful-er.

We went to SLC this weekend to pick up Elaina at the airport. It is so good to have her back! We went school shopping and out for a welcome back dinner. Eddy couldn't believe how much she had grown and Cole was hysterical with happiness!

I'm going out to visit my parents in early Sept. It will be good!

18 lbs down, 47.6 to go (and other updates)

Wow. I've been doing very well lately. Exercising, not having nightly meltdowns, and feeling pretty happy, overall. Of course there are reasons to be sad, upset, and melt-downy, but I'm trying to focus on the things I have control over. I guess it is even good for an agnostic person to have the Serenity Prayer on the wall.

Once I start exercising, the weight melts off. I think that is genetic. My muscle builds fast. Big-boned viking girl. I had Eddy take pictures of me to compare to later on. That will be a good thing later on, lol.

Dad is handling the chemo fairly well. He started last Friday and will have it once weekly for two more weeks (I think), and then another scan. I'm hopeful.

It's really a difficult thing. Acknowledging that my dad's time is very limited and trying to plan around that just feels morbid. Like we've given up hope. I guess the reality is that I have hope. I understand that the reality is that my dad will die waaay too soon. But I have hope that he will be able to see through the diagnoses, scans, medications, and side-effects and just be able to enjoy the basic things in a way that he never has before. I want him to be floating on a cloud of peace and love when he dies . That I am hopeful for. Sort of sounds like a Care Bears episode, huh?

Life seems to suck a good part of the time. Good thing, that the good things in life are amazing!

Military base Camp Lejeune

I just found out some very interesting stuff. My dad was in the Navy right out of high school and was stationed at Camp Lajeune (la-june) in North Carolina. Apparently from 1950 something to the early 80's the drinking water there was contaminated with solvent and degreaser; chemicals often used in dry cleaning. Contaminated by up to 500 times the "safe" level. There is a ton of info out there and things are starting to unravel; cases being brought to court, scientific study results, etc. A strong connection between these chemicals and cancer, specifically kidney, exist. Many children born on base are overwhelmed by different diseases and conditions, many of these children died before reaching adulthood. Many with aggressive types of cancer. Crap. Apparently, there is documentation of the military being notified about the contaminants, the extreme concentration of these contaminants, and the military chose to do nothing. It wasn't until '85 that the water sources identified as contaminated were shut down.

Crazy shit. I'm sending my dad all of the info. My thoughts are if my dad can be awarded some sort of compensation, he can leave my mother knowing that she'll be able to take care of herself. Maybe that would also alleviate his fears of losing health coverage once he is unable to work any longer. I'm just hoping that maybe this will reduce some worries and allow him to focus on spending time doing what he wants to and spending time with those he loves.

I don't want to title this.

I can't believe I forgot. I knew that my parents had gone for more scans to check the progress of his treatments and were awaiting the results. Well apparently they received the results a couple of days ago. My mom told me tonight.

All areas show growth of the cancer. No shrinkage, no slowing, nothing. Originally the doctor had said that my dad had 6 months without treatment and 18 months with. If the treatment is not working does that mean we're back to 6 months (I think 5 have already passed)? They have to wait a week to talk to the oncologist. You should NOT have to wait when you are terminally ill. It is wrong and it makes me soooo angry. I got all emotional last night just feeling like I really needed to be with my dad... Tonight I feel desperate to be with him. But he is working. Working! If I were him I'd QUIT. Although he is rightfully concerned about health care. I feel like all of the excesses in his life should be removed. He just should be as happy and as comfortable as possible.

This whole thing is just wrong. It feels so heavy, so twisted. I realize that I am not the first daughter to face losing a father, but it feels unbearable.

I hate update posts, but not much I can do about that since it has been 2 + weeks from my last post.

Eddy, the kids, and I went to Washington to visit my parents, friends, and other family. It was great to be back. My dad started clinical trial drugs the day before our departure and he is still seeming to tolerate the side effects well. I held it all together fairly well while I was there. We kept busy and once we went to back out of the driveway I started crying. The thought of never seeing him look the same, anticipation of the deterioration that is inevitable, and the non-guarantee of when I'd be back to hug him again was all too much. Now I find myself sort of scared to call them. My dad called that the "cancer curse". No one knows what to say so they just avoid him and the situation. I push through that because he's my dad and even if I can't come up with something to say, just calling will be good. Someday he won't be there to answer.

I'm starting to seriously contemplate studying philosophy. I do it all day, everyday, so I might as well earn a degree to make my space-out contemplations worthwhile.

Welp. Today will continue in my pajamas, on my couch watching cartoons and eating Easter candy. Sweetness.

Current events

I'd say the most prominent, thinking time user-upper in my life right now is my dad. He, being the strongest, most reliable, knowledgeable, insightful, and loving person in my life, has been diagnosed with cancer. Renal cell carcinoma. That is kidney cancer. He is in the IV stage of IV stages and it has metastasized to his lymph nodes and encompasses a big vein (can't remember the name).

A month ago a doctor gave him 6 months to live without any treatment and up to 18 months to live with a drug that only promises to slow down the progression of cancer. A week ago he was approved to join a clinical trial using Interleukin-21, a possible cure. All other patients in the trial have had a nephrectomy (the removal of the kidney), but due to the cancer being spread out near his veins, surgery would be highly dangerous. So he is truly the guinea pig in this trial within a trial. The outlook is not wonderful, but he seems hopeful and ready to give it a go. He'll be in the hospital receiving the treatment for one week, two weeks off at home. Rinse and repeat. After two treatments they will scan the tumor and if it has shrunk, will continue. If it hasn't he will be put on the drug that slows the progression of the cancer and we will watch him go, something I never comprehended as even possible. The clinical trial will be no fun, the doctor told him to expect to feel as though he is experiencing the worst flu symptoms ever.

In the course of a the couple months that this has been revealed I have denied, cried, feared, and attempted to plan around all possibilities. What makes me feel even more jumbled is being in Idaho, 700+ miles from him. Trying to figure out a way to move my family, sell the house, and remain employed is more than overwhelming.

He has become, in my thinking, this fragile and sad story, this weak and scared person. Those are words I thought I'd never be able to use to describe my dad. I love him more than I could ever explain. I am terrified that I will not be able to remember his voice once he dies and have taken to saving all of his voice mails. My grandma died 5 years ago and I can't remember her voice. It is like a distant memory hanging off of a single neuron in my brain and I can't grasp it, although there is some sort of tasteless aftertaste of her voice, maybe the insistence in my mind that I couldn't have possibly forgotten. That makes me feel ridiculously guilty.

I know that people lose and die every day. But somehow my situation is selfishly more important and painful than anyone else's. I am scared to hug him, not sure what to say, and this is all new and somewhat incomprehensible.