trying to be thankful

I went into writing this post thinking it should sound victorious. Or relieved. Or at least somewhat positive. I’m alive! I feel like writing again! Both of these things are true. But i’m now 10 days post surgery and i’m not feeling victorious, relieved, or very positive. I am tired. I am discouraged. And I wonder constantly whether I made the right decision, allowing myself to be cut open.

Maybe this is natural considering the post-surgery discomfort I am now experiencing. Well, more than discomfort–I would call it shock–to every system in my body. I remember feeling crappy and being discouraged last time, but I never remember asking myself whether I had made the right decision. Still, I hurt. My scar is raw-feeling and looks like something out of a horror movie. The hole where my drain used to be is dripping. I can’t move like I could 11 days ago. Walking is laborious. I get winded easily. Everything is swollen. Sitting is uncomfortable. Sleeping is uncomfortable. Getting up is hard. My brain is cloudy from the pain meds (apologies if I don’t make sense). My body feels exhausted.

My family says yes, I made the right decision. They saw the surgeon’s iPhone pictures of all the tumors he managed to take out. All I saw was an oxygen mask and a nose tube and a million wires and tubes connected to me the first few days after my surgery. All I felt was shock and pain.

It wasn’t an easy surgery. I’m young and otherwise healthy but my tumors apparently tried to rebel against the attack, making the whole ordeal very difficult on my body. They gave me more units of blood than I thought was possible to give. I spent three days in the ICU. I gained 20 pounds in fluid and all my limbs, not to mention everything else about me, looks like it belongs to someone twice my size. My surgeon had to use staples to close my incision in an effort to end the surgery quickly and stabilize my condition. I had three IVs in my arms, one in my neck, and another one in my wrist. I don’t really want to know what else went on in the OR.

So you can see. The first things I remember croaking post-surgery, beyond “yes” I can hear you and “i’m hot” because I was running a high temperature and “my mouth is dry,” was: “Was this a good idea?” Quickly followed by, “I’m never having surgery again.”

I may never know whether it was a good idea. I may be more thankful in a month or so after I have another scan. I’m at least thankful that I made it through and that it wasn’t worse, and that the surgeon actually did take out quite a few tumors by the sound of it. That must have some benefit. I’m thankful for the amazing support I have from family and friends, without which I know this would be much, much harder. I know my discomfort–the shock–is temporary. I just have to get through one day at a time. Today I took two long walks and napped in a real bed. Maybe tomorrow i’ll take longer walks, dress in something other than my baggiest, most horrible pajamas, and take less pain meds.

Maybe there’s no use in dwelling on my three terrible days in the ICU. Or on what happened and could have happened while I was on the operating table. I’m alive. I’m 25 tumors lighter. Everything seems to work the way it is supposed to. The crisis, I think, has passed for now.

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22 Responses to trying to be thankful

  1. Lindsey, please have courage. Each day that passes will bring you more strength and energy. This will all be a bad memory and you will see you made the right decision. I am praying you will be alright, just have faith. I know your family and friends are supporting you and love you and want nothing but the best in the future for you. Just think your wonderful positive thoughts. They will bring you though this and be a healthy young lady once again.
    I love you and you are in my prayers constantly. Love, Grandma

  2. Anna Goodwin says:

    Hi Lindsey, I have been following you very very closely from the beginning. You have the same exact thing that my daughter had, accept her oncologist decided not to have the surgery. I asked her husband why, since I couldn’t talk to the doctor directly. He said Christina just couldn’t have it, but here you are with the exact same thing and you have had the surgery and have come through it. You’ll do much better Lindsey as each day passes, and you will be happy for being alive and having made the right decision. I would love to get to know you since you are a success story of PNETs, and Christina was not. She was 38 yrs. old, and died one month ago today. I am more than heartbroken. I’m a mess.
    Thank you for letting me talk to you, I hope you email me directly and we get to know each other. I want to be one of your friends. I have a huge hole in my heart. I will continue following your progress as you continue to write your stories, they are amazing.
    Thank you. Anna Goodwin

  3. So glad to hear you made it through, though it sounds dreadful. I hope it will feel like it was worth it after you recover. I both hope and dread that I will be able to have the same surgery in the future. As a fellow liver, I’ll be thinking of you and looking forward to your next update.

  4. Debbie says:

    So glad to hear that you are once again feeling well enough to share your journey. That in itself is such a milestone. Young bodies heal so quickly, scars fade and the fluid will go away as quickly as it appeared. Take ur pain meds faithfully it allows your body to heal so much faster if it’s not on overload. Your grandmother is so right that your strength is just a day away. Your family’s devotion will cover you as you lea n on your faith and find your way back to health. Praise the lord for the skill of wonderful doctors, surgeons and of course nurses that have gotten u to this day …..alive and blogging. Go girl!

  5. Worrywart says:

    Your post is always a gift. Thank you. <3

  6. tom says:

    Fight on. I have read your journey and think we would be much poorer without you and your words. I hoe your recovery goes much better and keep on writing

  7. Matt says:

    Second guessing yourself is like trying to teach a pig to sing…it’s a waste of your time & just irritates the pig!

    You did what you had to do..when it ought to be done…whether you liked it or not!

    The surgery took a lot more out of you than you expected.

    I understand…now Cowboy up & move forward.

    You are a survivor, not a victim.

    Focus on the positive….you’re carrying around less tumors today.

    Good morning, Brave Woman !

  8. Heather says:

    I’m a stranger, thousands of miles away from you, but I’ve been thinking about you and am so glad you’re back. I know you feel like crap (understatement), and that will last for a while, yet. But you can – and will – do so much with your life … It would be ridiculous of me to put anymore “but” statements here because I don’t know you and I don’t want to dismiss the pain you’re feeling. But I’m just glad you’re back.

  9. Piggeldy says:

    Good to have you back.

  10. Eduardo Cruz says:

    Glad to hear from you again, Lindsey.
    Prayers and positive thoughts keep going your direction.
    All the best to you and your loved ones.

  11. Sharon larsen says:

    Lindsey, It’s good to hear from you! I am so sorry you are questioning your decision. I hope that with time, as you get stronger and stronger, you will know that you made the right choice. I’m one week away from my surgery. I wish I could talk to you more about yours but I realize you are not yet up to it. I’m praying for you and that you will feel better every day! hang in there… you truly are a liver!

  12. Michael says:

    I’m so happy to hear that you made it through the surgery and that it went well. I hope that you continue to recover and feel better soon!

  13. matti says:

    thinking about you, Lindsey :)

  14. You don’t know me, I stumbled here from a twitter link, but let me tell you that if one piece of writing is anything to go by, then yes, yes, you made the right choice. Tumours are not your friend, they need to go.

    You have a way with words that works even under the most awful pain and suffering.

    Wishing you much strength in the oncoming days. I am sure it will be difficult and painful at times, but I hope you heal and live a wonderful life.

  15. Kenya says:

    You’ve been through a hella trying experience (just a little Bay Area lingo there).
    I thought having a craniotomy was bad, but hearing you describe what you have been though over the last ten days in addition to the previous years puts everything into perspective. That feeling of questioning happens to all of us who have to take drastic measures to preserve our life. I remember having similar thoughts when an antibiotic-resistant strain of bacteria took hold of me while I was in my last month of in-patient chemotherapy. This happens to all of us.

    Right now you may want to consider just all of that you have been through and remember, you have survived what most could not even stomach. And you’re on the other side and blogging about it. Even when your insides feel like they are ripping apart, remember you will get past that too. For some reason my scar on my head is bothering me right now but I think it’s just a psychosomatic illustration of the trauma that we share. Just keep in your mind that this too shall pass. At least that works for me. I wish you a speedy recovery and that you find that anchor that will keep you sane through this hard time and the days to come.

  16. Cathy says:

    Lindsey so good to see you feel well enough to write and let us know how you are.
    Sending a huge hug and know you are in everyones prayers. Allow your family and friends to support and care for you as your body rests and regenerates. Feel the circle of love that surrounds you….

  17. Jill says:

    Lindsey- although the experience was/is miserable, it’s the longer picture you can look at now. 25 tumors lighter is music to all our ears. Each day, remember to recognize any little progress….day by day, it will be easier. I promise. Every thing you try, and every thing you do now, is helping your life. And that I am truly grateful for. Sending you love and complete refuah shlema.

  18. Juliann Long says:

    25 tumors sounds like a great success! Don’t second guess yourself; you made the best decision you could with all the information you had. Thanks for updating us through the cloudiness.

    I’ll keep sending positive vibes up to LA
    xoxo

  19. Juli says:

    25 tumors sounds like a great success! Don’t second guess yourself; you made the best decision you could with all the information you had. Thanks for updating us through the cloudiness.

    I’ll keep sending positive vibes up to LA
    xoxo

  20. Bonnie says:

    I am new to your blog, but I just had to leave a comment on this post. Almost five years ago, I had liver surgery. I was diagnosed with cirrhosis when I was 19 and had the surgery about two months later. During my recovery, I dealt with many of the same issues as you stated above – tiredness, a scar that hurts and drips disgusting goopy stuff, difficulty walking, feeling like my body weighs 100 pounds more than it did before the surgery … It’s tough. The important thing is that you eventually move past this stage. I couldn’t sleep in my bed for the first 3 months after my surgery because I was unable to lay flat enough. My incision was 10 inches long across my abdomen, and I worried that the stitches would suddenly rip open if I moved too much.

    Now, almost five years later, it seems like a bad dream. It was a nightmare. I focus on the positive aspects, though, which are that I am a happily married 24-year-old who weightlifts, runs, and dances as if she has no health issues. I will always have liver disease, but I refuse to let it run my life.

    I wish you all the best in your recovery. Always remember that it will get better. I absolutely promise you.

  21. Stephen Haney says:

    Thinking of you. I’m hoping your pain has eased and you are recovering well.

  22. Kristin says:

    The bravery and grace that you face life’s difficulties with is inspiring. You’ve made more than a big impression on me and I hope you know that you’ve influenced my perspective in a way that no one else could. Thank you for that gift. I know you will triumph over this recovery, and over cancer in general and will come out the other side the type of rare person that can only be created in the crucible of life’s most challenging situations. We will all die someday, but very few of us will be able to say we faced our fears head on the way you most certainly do. Congratulations on showing the world how it’s done. <3 Best wishes and you are in my thoughts very often.

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