Tuesday, January 10, 2012

I Am Dying

I think I do a great job at minimizing things, and unfortunately this really doesn't give everyone the full big picture.  I don't like to blog when I have bad days, is part of it.  I fortunately forget fairly easily those bad days when I do get a good day.  I guess this could be considered a great strength, while at the same time, my greatest weakness.  The minimizing does me no good because I don't think it gives you as accurate of a snapshot of my reality.  You see this fairy tale of my life where everything is sunshine and rainbows, when it's actually the furthest thing from the truth.  So today, a depressing, but necessary look into my daily life.

The first thing I should probably talk about is how I feel physically, since that's the most pronounced problem.  I am in a near-constant state of pain.  All of my doctors and HB tell me that I have a really high pain tolerance.  I guess that's a good thing, but at the same time trying to really describe things to others is hard for me, because the things that would make them cry just make me grimace.  The pain mainly radiates around my kidneys and liver.  I walk around all day feeling like someone has a dull object crammed into both sides of the small of my back.  It's really uncomfortable for me, and I'm on some pretty heavy duty pain killers to try and alleviate that.  I've had to ramp up on fentanyl patches several times just to keep up with the pain.  On top of that, I take between 6 and 8 oxycodone for carry over pain that the fentanyl can't keep up with.  

My liver is another story.  Sometimes I can have a whole day where it doesn't cause me any pain.  I like those days.  On other days it feels like my liver is on fire.  While this doesn't seem like a lot, my liver it taking up most of my abdomen now, so the pain is not localized, it's actually spread out throughout the entire organ.  On these days I usually don't even get out of bed.  Maybe I make it to the couch, but I am seriously crippled by the pain and can't do anything other than try to sleep it off.  

Since the cancer is throughout my GI system, I get other fun effects.  Sometimes it's diarrhea, others it's some constipation, most of the time it's gas.  The gas hurts the worst, and luckily, most of it isn't smelly.  (If you're at my house and you do smell a terrible gas smell, it's our dog, Ru.  HB will back me up on this.)  When I was first diagnosed, I weighed 187 lbs.  That's the lightest I'd been since middle school.  As of last Tuesday I weigh 134 lbs.  When I take off my shirt I look like I've spent years in a concentration camp.  I can't keep any weight on, no matter what I do.

The last pain I have is in my ribs.  Since things are just growing in size, my ribs hurt pretty constantly, as they're constantly being stretched to make more room for my ever growing liver.  Another added bonus is that my liver is also pushing on my diaphragm, making taking a full breath an ever greater challenge.  I feel like I'm slowly being strangled.

Mentally, I wake up every day wondering if it will be my last.  Will today be the day that my kidneys/liver finally shut down?  Will today be the last day my heart beats because it has to work so hard to deliver blood to all of the tumors?  Will I finally suffocate from the liver pushing on the diaphragm?  Is today that I die because of 1000 other complications that happen?  I feel like my life is balanced on a knife edge, and one wrong move and I'm toast. 

I sit at home every day having not heard from lifelong friends in months, and wonder if I'm already dead to them or something.  I know things are complicated and weird now, but it doesn't mean I'm still not the old Ron who likes to laugh and have fun.  I'm still here.  Give me a call, I know that things work both ways, but trust me, it means a lot more if I don't have to put the effort into it, as everything now requires extra effort in most cases.  Come visit me for a day or the weekend.  I may not be able to do all of the things that I used to be able to do, but I can promise a good time.  But not for long, I fear.  Every day is a new set of challenges and struggles; another set of obstacles presents itself.  It is a long hard, uphill journey, which will only end one way.  I will die.  There is no cure, there is no more treatment.  So please don't forget that I'm still here, because I can't guarantee that I will be for much longer.

Sorry for the shittiest post ever, but I really needed to get that off my chest.

20 comments:

  1. Ron, I love you. Thank you for your honesty. Jo and I are really really looking forward to seeing you in a few days. Hugs in person soon.
    Love,
    Jen

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  2. :( I think of you guys often.... you are a very strong a couragous man... I envy you for that..... Sending smiles your way....

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  3. Dear Ron,

    I am so glad that Jenny and Jo are coming to see you, and I wish I could join them. Thank you for your very honest post; please know that you and Heather are in my thoughts and prayers. I loved the days when you used to stop by. You have always been a great gift to our family.
    with love, and long-distance hugs, Peg Sammons

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  4. Sweetheart, you are in my thoughts and prayers each and every day. I am amazed by your strength and courage.George and I both love you...your'e family to us. I hope you know that anything we have that you need,is yours, all you have to do is tell us. Stay strong.

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  5. Ron, I love and think of you often. I remember when we were young and I looked up to you soooo much! Because you are your own person and I hope someday I can be brave enough to be just me. Which in fairness is hard to do in high school. But whenever I need strength I think of you, whenever I need a role model I think of you, all in all your amazing!!!!
    Love Janna :)

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  6. Ron, your strength, honesty, and courage are amazing. It's no wonder my buddy HB loves you so much.

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  7. Ron,
    I wanted you to know you and Heather are in my thoughts all of time. I feel so sad to be so far away from you guys (and to never have even met you!), but I've heard so many wonderful things about you-- I wish I could come hang with you guys for the weekend! Know that I'm sending a lot of love and wishing you strength and a reprieve from the pain and a feeling of being held by your many friends and people who love you. Thanks for sharing your thoughts so honestly. Hearing your experience felt helpful to know what's going on for you.
    Sending so much love...
    Cyndi (an old GVSU friend of HB's)

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  8. Dear Ron,
    I wish I would have spent more time together like we did when we were little. I know you guys (you,Doug,and Heather)drove me crazy at times and to the point I had no idea what to do (being so young myself). I loved you guys because you were my little brothers, and sister. There is no excuse to why I didn't keep in touch but I feel horrible because I didn't. From what I have read and things I've heard about you, you are a fun and lovable person to be around. You are a strong young man probably stronger than me to be able to deal with all that you do. I know I would probably just wanted to crawl in a hole and be left alone, but that's just me. I guess I just wanted you to know that I love all you guys, for you are my god family.

    Be strong and love ya,
    Julie Bush (Your god sister)

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  9. Ron, you don't know me and I really only know you through these posts. I just wanted you to know that you do mean something. Even to a stranger such as myself. You have such an amazing story and like all stories, they end but your posts will live on. Not only in my mind and how you've touched my heart, but through everyone you have ever been in contact with. You are loved. By family, friends and even strangers. You have had an amazing journey and it is so sad that this terrible disease is making the travels rough. I pray often that the time you have remaining, like that of those that don't have such a terrible disease, is filled with love of friends, thoughts of how you have touched and affected others and and the promise that one day, hopefully those that love you will join you once again in whatever is after this life we have here in life.

    Thank you for your honesty, humor, and sharing of the time you have struggled with this terrible thing life has dealt you. Again, you are someone, you are special, and you are loved. I hope you leave this world at least knowing those things more than anything.

    Take care and peace!

    Lou

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  10. Ronny...
    I don't get to see you often but please know you are in our every prayer. From the moment you were born you have always been a very special nephew. You are my daily inspiration. Love you lots,
    Uncle Gary and Aunt Teri

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  11. Love from NY. Your honesty is humbling. I'm grateful that I bumped into you at Highland Fest. You're still the funny Ron I remember! Thanks for sharing your journey. Hugs, Kristi

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  12. Hi Ron,
    I am Laurie Perrys cousin. I am sorry to hear of the terrible pain that your suffering from. I dont know how your religious views are, but I was hoping that you would be willing to accept a personal message from the bible.
    (Revelation 21:4) . . . And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.. . .
    (Isaiah 25:8) He will actually swallow up death forever, and the Sovereign Lord Jehovah will certainly wipe the tears from all faces. And the reproach of his people he will take away from all the earth, for Jehovah himself has spoken [it].
    (1 Corinthians 15:26) As the last enemy, death is to be brought to nothing.
    These 3 scriptures point to exactly what the human family needs, no more death and suffering. Also a promise that humans that have died will live again.
    (Acts 24:15) . . . I have hope toward God, which hope these [men] themselves also entertain, that there is going to be a resurrection of both the righteous and the unrighteous.
    I pray that your pain be short and hope that you know that God feels all your pain and doesnt want anyone to suffer. We are his children and as our loving parent he only wants us to be happy.
    May you enjoy your family and friends.
    Agap'e Erica Lev

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  13. I saw a tee shirt that said, "pain is weakness leaving the body". I thought it was kinda badass when I first saw it. Like we should seek pain, like the sensation of pain is somehow cleansing. I think it was supposed to be about sports. As an abstract idea or something we cultivate in our lives it seems like alot of life is about sacrificing comfort for something distant. Something that is not directly present like an ideology, a belief, a hope about what the future holds. This is always uncertain, circumstance rains down and can flood the solid ground we thought we were walking on. But these are more like ideas of discomfort as pain radiates we feel the ideas we have about life cross a threshold that is unique to our individual experience. Pain is ours. We cannot even properly express how pain articulates itself, it is abstract in communication. Some of us seem to be aware of its effects and take pain on in a psychic realm, empathy. To share ones pain is to share something of the gift of awareness, it is to attempt something poetic and human. It is to hope in a pure way. I don't know you Ron, and I hope the tone of my words cause you no worries. I just wanted to present my thoughts on your gestures as they have struck me with the profoundest (sp?) sense of meaning.

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  14. Goodbye Ron. Thank you for sharing your story. Lou Holliday

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  15. We went to Matso's tonight, and we really miss you.

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