How things could go

Pre-reading warning: This isn’t the happiest post you’ll find on this blog, but don’t worry there will be a good video at the end that should make you smile especially if you’re a Jean Claude Van Damme (JCVD for short) fan.

I finally was able to meet with a neurologist this week. Apparently I should have been going to see one since my surgery, but since I didn’t pick up their appointment call (umm I was drugged and sleeping after surgery) they didn’t bother with another call nor did one of my regular docs tell me I should be seeing one until last week. I could bitch about many scheduling and patient care issues I’ve had (been trying to focus only on the positive), but I’ll end that here for the moment.

All that being said the meeting with the neurologist was for me one of the most helpful and informative meetings with a doctor I’ve had since all this began. You think when being diagnosed with a terminal illness the docs would give you more information than just an estimate on how long you have left to live. I’ve spent the last couple months trying to figure out, and to be honest scared shitless, about what would happen to me as I got closer to death. I’ve not been scared of actually dying (a lot of other emotions about it, but not scared), but I have been scared about the cancer growing back in my brain and what it might do to me while I’m alive. Would it change my personality, would I become angry and aggressive, would I go blind, would I forget about the ones I love? The list of such questions has been growing and growing and driving me nuts.

So what I was told is that the area of the brain where that piece of shit tumor will most likely re-emerge will mainly affect my short term memory, ability to use correct words/phrases, and it will make me more tired. He said that for most people who have the tumor in a state where it can’t be surgically removed, or if the patient doesn’t want another surgery, they keep sleeping more and more, and generally pass away in their sleep. I know that sounds depressing, but for me hearing that I felt a ton of weight lifted off my shoulders. Having someone tell you you most likely won’t suffer some terrible pain from death is to me a welcome thing to hear.

Friends and family have been hoping that the cancer takes its time to come back, long enough for some kind of cure for it to come out. I’m wishful for that as well, but it’s not something I can be blindly hopeful about and not deal with what has a higher chance of actually happening. I’m not giving up, but I am preparing for best and worst case scenarios.

Okay, so here’s JCVD dancing to a good tune. Close the annoying ads.

10 Comments

  1. Kim

    Hey Loren,
    I am so glad you are being open with all your feelings. No matter how old we both get I will always have a mother’s love for my son. When you are sad I feel your sadness, when you are happy I feel your joy; when you are worried and fearful,I feel your concerns. ( I think I may take on your feelings sometimes too much). But you are my son! If your worst fear should happen, I want you to know that Dad and I will be there to surround you with our love and care all the way. We have known you for 33 years and no personality change caused by this disease will change our thoughts about who you are or diminish our love for you. You have been so strong with all you have been through already. You have been so practical and trying to keep positivity and hopefulness for each new day. It is ok to plan for a worse case scenario, but please keep living each day with hope for tomorrow. We dont know how the Lord wants to use us in all the days he has ordained for us. Please my son, keep seeking the Lord always and you will find. “Draw near to me and I will draw near to you”. Persevere everyday in learning more and more about Jesus Christ. Dad and I love you so much!

    • Jessi

      ,,,,,,,,,,apparently can’t type, LOL, wiping a way a tear. OK, where was I.

      I am your friend, it didn’t hit me till at a recent gathering where someone was saying he had been his “longest friend”, it made me begin to think about who was my longest, first friend in this crazy, great, sad, scary, sometimes awesome and sometimes sucks, world. DUH…… YOU! And how cool is that!!! lol God gave me an awesome first friend!!! I have a scar that I can remember I got when we were told not to mess with the can and we did and I got cut, LOL, I see it as a memory where sure I got a scar, but we had fun doing it, but boy did we get a talking too afterwards. Or when you got your driver’s license and convinced your Dad to let us go on a ride, just down the road, but we went a bit further, to the GPD’s portable which totally freaked your friend Dan out, not knowing I knew the GPD, and we BEEPED, and BEEPED. LOL Or when Jodi was born and boy you were happy and ready to meet your sister and your love for her. You always had such a kind heart, and I know where you get it from, your Mama and Daddy. I had to learn a long time ago, my Mom is going to worry about me, even now I hear every time I am to take my meds “Jessi did you take your meds” lol. I am pretty good about it, but I’m like “Yes!” lol They just love us, and we are so super blessed to have the parents we do, Your Mom having tears for the fact that your going through something so unexpected, and so not fair, and she’d take on herself if she could, is just how God made Mom’s. They love us, they cry for us, we love our “fur babies” and we cry when something happens to them, imagine if you’d carried them inside for 9 long months, and wanted to protect them from the things like broken hearts, in my case, divorce, illness, 9/11, all the bad stuff, and while we were in their belly’s they felt some control, making sure to feed us, give us prenatal vitamins, no drugs or alcohol, smoking, but then we are pushed, literally, into this world and no matter what they can’t keep all the bad stuff from us, but by God they will try and they take on emotions we have, I hold it together most of the time, but someone, a “bag boy” told me as I was just so upset and angry and he said “Sometimes you have to cry before you can laugh”. That stuck with me. . My Mom is always just wanting me to be as happy, free of worry and pain, and she’d trade places with me in a heartbeat. I may not be able to have kids, and that kinda stinks, as I love kids, but maybe I would just be a totally paranoid, worry wort, and never let my kid live, too afraid to lose him or her. Our parents are just like we are, not afraid of dying, or where we go next, but of not making the most of what time we have left together in the here and now and make it last as long as we can and be thankful for every day or moment we are able to share together. Sometimes Mom worries so much about every little thing, and after facing dying myself, and tons of time time sit and think about it in the hospital, I came to the conclusion we are all born dying, from our first breath, I guess that is why they say “cherish each breath we have as we are not promised another.” Sorry for getting all deep on you. I just was reading your Mom’s post, and thinking is all. And thinking of how my Mom is that way with me. It is a blessing, many walk around this world with parents who could care less. Yours couldn’t care more. And my Mom loves you like a son. So she couldn’t love you more. I can’t remember many times in my life you were not in it. And I plan to make more memories with you and Alex, as your able. Just know what you mean to me. When one of my best friends passed away, her daughter sent me a beautiful “purse” in it a album of her Mom’s life all the way from NZ She ended it with this quote, I thought I’d share with you.
      “The Majority of us lead quiet, unhearaled lives as we pass through this world, But that does not lesson our possible impact on scores of people waiting for us to come along, someone who will live a happier life merely because we took the time to share what we have to give.”
      And You have given and still have alot to give. I am blessed to be one of the recievers. I hope this makes some since. Know I love you very much. Give your beautiful wife a big kiss and hug from us, well, we’ll let you do the kissing 🙂 LOL I’m so glad you found each other. Much love to you both!!!!
      To My First Friend!!!! Hope today was a good day. Rock on!!!!
      Jessi
      Mama and Mattie too!!!!

  2. Jessi

    Hey There!
    My last post was so serious so I thought I leave a lighter note. I know it can be so scary when there is so much unknown of how things will go, will it hurt, will I have time to say “goodbye” to those I love, time to tell those I love just how they have made my life better by being in it. I am glad some answers came with your visit. I hate “goodbyes” there is a song called “Say Goodnight, Not Goodbye” so I’d rather say “Goodnight”
    I just want you to know you can’t remember what I said five minutes ago, it’s OK. If you talk and the wrong things come out, it’s OK. If you offend me, hmmmmm, well I will handle it:) Just tell me to get over it and that is OK. And if you ever don’t know who the hell I am, like you could really forget someone, a friend as cool as me, REALLY! Just joking, it’s OK. And know we love you, all of you, but hate the damn cancer. BUT LOVE YOU. ALWAYS. So we’ll just say “Goodnight” for now, and know how much we care, and no matter what that will never change. Keep that great sense of humor as long as you can, I so admire that. I sometimes make fun of things with Mom that are so NOT funny or wouldn’t be to most, but keeping a sense of humor and laughing is good medicine. Sometimes a good cry is good medicine, and to know you have a wonderful soul mate to be there to laugh and cry, to know you have such a wonderful Mom and Dad to laugh and cry, and Friends and Family, and list goes on, who stand by you all the way, is the best medicine. Just keep your awesome attitude, don’t be afraid to be YOU. Because I am sure I can speak for everyone, YOU are AWESOME!!!!
    Goodnight for now,
    Jessi

  3. Jessi

    Hope you and Alex and family have some much needed time together at the beach. Hope it gives you some much needed time to sit, relax, rest, restore. Would you do me a favor and run your toes in the sand for me?
    Love you much,
    Jessi

  4. Robin Hull-Kress

    Hi Loren, I know you and Alex and the rest of your family have worries about what is ahead in your venture. I think it is so great that you have such a positive attitude and if will, friendship and love has any part in a cure being found it will happen! I want you to know that I am here with all of your other family and friends to take this journey with you and you are not alone but surrounded with positive and loving energy!! As always let me know if you need anything!!! BTW Tori and I had lots of fun with Zelda!

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