Wednesday, 13 August 2008

Been To Peter Mac...

Hi there dear ones, well, I had my much anticipated appointment with the surgeons at Peter MacCallum Institute yesterday afternoon. I am still a little numb as I write this so forgive me if I sound as though I am on auto pilot. This is what I was told, I can have surgery BUT not the full kit and kaboodle. What this means is that, no they cannot cure me! (sob) Yes they can buy me some quality for the time I do have left. In order to buy me this quality they have to do the same operation they were originally going to do but a slightly less radical version. What this entails is that they don't need to take my vagina, well, only a part at the very top where the cancer is pressing it's way through but not as we first thought the entire thing from the vulva which would have required reconstructive surgery. So that is something I guess! Secondly, they don't have to take my bladder which means I won't be left with two bags. Another good thing! What it does entail is still quite radical, I will lose my lower spine, (tailbone), my entire bowel and rectum, everything that you would lose in a hysterectomy plus a bit more, so muscle and some lymph nodes etc. It still requires reconstructive surgery for the rectum which they apparantly take muscle out of one side of my abdomen and make a sort of flap that folds over and creates a false rectum (I think that's right, it's a lot to take in). Anyway, I think what I am saying is that it is good that I don't lose as much during this surgery but the price for that is high as I also don't get cured. The cancer has, unfortunately, spread out of the pelvis area and has been making it's way up towards the liver again. This doesn't necessarily mean it will go into the liver as I understand it and the cancer that is there is tiny. My surgeon described it thus - like a field of mushrooms and he could go in and pick all those mushrooms but next day a whole new batch would be up. He did say though, that these may grow in size or in terms of spreading, very slowly, or one or a few could rear their ugly heads and cause trouble very quickly too. We have no way of knowing! So, it is not worth doing the major radical surgery because even if they remove it all from the pelvic cavity it is still elsewhere in my body, however, they feel that, because of my age, (being reasonably young lol) and because of the pain I will suffer if they don't do this surgery, that it is worth doing this less radical surgery. Am I making sense? If I don't have the surgery, then the tumor that is the cause of all my problems will get worse and the likelihood of chemo working on it is pretty much nil because of the amount of chemo I have already had over the years and same reason with radiotherapy. So the tumor will grow and because of where it is will cause me so much pain and suffering that I wouldn't have any quality of life. I totally believe this as I have already had a sample of how much pain this tumor can cause. Remember I was in hospice because of it and was on an inordinate amount of drugs to try and control the pain, such a strong cocktail that I could barely focus which is no good for a mum and in terms of being here for Jack, totally useless, I may as well not be. So, they will do this less radical surgery to save me that outcome and give me some quality of life before my time is up. As I say that though, there is a chance that all these little cancers will stay small for a long time and perhaps new chemo's will be introduced within that time, new trials, new stem cell research who knows what else may come along, so I can choose to focus on and hope for something of that nature to happen. I need hope at least, without hope it is too difficult to keep one's head above depression. Anyway, if one of the tumors or more, does grow fast I think they believe it will be a less traumatic and painful (how do I put this) decline because the position of the other tumor would have made that decline a lot more traumatic and painful than if they go elsewhere. Some of the places they could go are lungs, bones, liver again, brain.

So, do we celebrate? No! I was hoping that if I had surgery like this I would come out of it with the absolute joy and freedom of knowing the cancer was gone from my body after all these years. I wanted that so very much I could taste it! Do we get terribly upset and feel that there is no hope? No, I make the most of what time is left, I appreciate the fact that the worst of the cancer is removed, I can have some more Avastin after surgery and perhaps am lucky enough to kill off those small suckers for a while! I watch for clinical trials, for new research being done and new ways to rid this evil disease from my poor little body. I take really good care of myself and make the most of what good, symptom free time I am granted because of the surgery. I go on a holiday with my boys, I try and do and see wonderful things with them because I know that time is of the essence but there will be that window of opportunity where I will feel good, providing, of course, that all goes well with this surgery. It is the kind of surgery where complications are not uncommon. Usually fixable complications but complications nonetheless. I will pray that I don't have to bare that as well. The surgeon also explained to me that I would not feel as I do even right now in terms of health, for approximately two months and possibly longer. He said I will be wanting naps throughout the day, I will need help with the housework and will tire very, very easily. So I have to count that time out when I am considering my quality time with my boys. I really do believe though that after most types of surgery, if you can get up and out of bed and push yourself really, really hard, you will recover much more quickly. This is why the nurses and doctors do make you sit up and even get out of bed the very next day after quite severe surgery. They have realized that this helps people heal much faster. So, I will push myself as hard as I possibly can in order to get strong more quickly so I don't waste what precious time I have left with my boys, on getting over the surgery.

Well my dear blog family, what do you think about all this? I must admit some of the numbness is giving way as I write this out to you all but in its place is an anger, or rather a hurt kind of anger. I feel like a hurting, throbbing, grieving, sad, sobbing ball of anger and sadness. (I know I don't make any sense saying that) I just want to lash out, I want to yell and scream and ask WHY and WHAT it's all for. Why would I come so close to having a cure but missing out by such a small bit. It just doesn't seem fair and yet I hate myself when I say that because I know that life is not about fair. But it bloody well should be. Why do harmless people get cancer and die slowly and painfully often in front of their most beloved people in the world, their children, and these f%^#*!* paedophiles and creepy so and so's that lock their daughters under their homes for years, creeps that can rape little babies and little children, you know, why don't they die a slow painful death from cancer. Why people like you and me and our loved ones who never mean to hurt anyone, who are basically really good, kind, unselfish human beings who just want to make this world a better place. Or is that why we do die, because we are decent and we do want to change the world into a better place, do the good die young because they are needed somewhere else or they have learned what they needed to learn or what, what is it all about and why do I end up having to leave my little boy sometime in the next few years? (My surgeon ended up saying that this surgery wouldn't buy me time it would buy me quality so I am assuming that the two year mark still stands - I could be wrong - I am too scared to hope). Anyway, I don't know where all that came from. I have typed that last bit like a whirlwind and I suppose I better go and read it and spell check it before I press the publish post button! Sorry my darlings, I just needed to vent and you know what, I think I'm going to need to a fair bit over the next few days, I don't mean just here on my blog, but in my life. I am just so damn angry but it's a sad anger which doesn't even make sense. I'm scared too, I don't know how I am going to stand the kind of pain that I will feel as I get weaker and know that I must leave my son. How do I do that? The pain of it will surely be the hardest and most revolting thing I will ever, or have ever felt. He loves me so so very much and now it's too much. I wish to God I had given him to his Dad when he was born and then he wouldn't be having to deal with such a tragedy so young. Don't get me wrong, I wouldn't want to miss a second of his life but if it meant saving him from the pain that is right now coming towards him then I would have done it, I know I would have but I didn't have the knowledge then. I didn't know and so I showered him with love and affection and time and made him love me and need me and even on top of all that, we clicked in such a way that was special and now I think Great, so all of that just contributes to his pain when I have to leave. How cruel does this world have to get- can someone please explain to me why and how and what but please do not say that I deserved this in any way because no one deserves this except perhaps as I said before rapists etc.

I hope this all makes sense, to recap : Still having radical surgery just not quite as radical. Cancer has spread past the pelvis cavity unfortunately making a cure simply not possible. Surgery will have me exhausted for approximately 2 months but it will give me quality for some of the time I have left. He couldn't or wouldn't tell me how long but he did say when I pushed him and queried whether it would be 10 years at least, that no, I wouldn't get longer actually, unless some new miracle drug came along, but based on what is available now then no, I wouldn't get even ten years in fact, as he said this is not about buying me time it is purely about quality of life for the amount of time I have left. He wouldn't commit himself to say anymore than that as he said he is only the surgeon and they are great at cutting things out but they don't know about all the different treatment chemo options that are available.

So there you have it my friends, sorry for the little outburst but you know I went back and looked at it as you do and just decided to leave it in and you know why? Because it is honest, it is how I feel and I don't want this to be a site that is so corrected and tidied up after posting that you get none of the raw emotions that often come out when you are feeling unguarded and want to write purely to express yourself. I also believe that by tidying things like that up you are selling out on others that may be going through similar or even dissimilar but their own stuff and by seeing me like that, it might enable them to be more open. Who knows but basically something told me to leave it so I have. I'll probably delete it after a few hours, then put it back then delete it again. Hopeless. Lol!!!

38 comments:

  1. Hello lovely Jen.
    I am just so sorry.
    I have no words, no answers... just sending out Love your way.

    We're in this with you, Jen. In whatever way we can be.
    Praying peace...

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  2. You must be so angry with every force that you can imagine. The "sad angry" makes perfect sense to me, as well as that sense of desperation and wild, lashing-out.

    We are all holding you in our hearts and minds and offering what comfort and love we can from across the miles.

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  3. Came by to check on you today. Actually, I do this every day, without fail. You are in my favorites, and have been for quite some time now. Words simply cannot express the heaviness in my heart. And I must say again, as I mentioned in a previous comment, even though we have never met, I can't help but think of you often, sometimes at different times during the day. I don't know. Little things pop up and I think of you or perhaps I'm having a miserable day and I'm quickly put in my place, as everything I'm "dealing" with just pales in comparison to what your facing daily. Just know that there are so many people who truly care about you and will always hope for the best. Hugs, Kristen

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  4. Dearest Jen - better catch up this week - best email is karen_mckeownatyahoodotcom as Oaccess that all day. Quality of time is very important for now - many things can happen in medicine in the future. I'll talk to you soon.
    lots of love and prayers
    Karen xx

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  5. It is really not surprising that you are responding like this - to have what seemed like a wonderful promise snatched away and replaced with something less than you'd hoped and prayed for. - Anger, sadness both aren't surprising at all. I felt such feelings when I read this, having been so relieved only a short time ago to read that you'd made your decision. Oh, Jen... I couldn't hope to come up with answers to the "why?" Why bad people survive and the good suffer as you are suffering... and especially why your little boy should face losing you. I can only pray that you will all come through this. I'm so sorry.

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  6. Jen, first, it was NEVER wrong to let your boy know you and love you. LOVE is what makes human, well, the best human they can be! He will always be a treasure for having known and loved YOU!!

    I think this surgery does sound hopeful. Perhaps because it's a little less extensive recovery will be a little less gruesome. Just don't push yourself too hard because that could cause setbacks. It will buy you quality time and you do still have time. The right combo of medicines could buy you time. It could!

    You do sound great! A good mix of anger, fear, sadness, hopefullness and all.

    You are everday in my prayers along with your boys.

    Cindy in Canada

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  7. Oh Jen.... I am so so so so sorry..... and I am so glad you posted, everything, please do not delete anything k?
    I still think there is a little more hope now, removing any cancer can only be good, and at least THAT tumor is gone. We will pray and trust that your recovery will be quick, and that your quality of life will be greatly improved. And then in the meantime.... some other treatment will come up, and it will provide more hope and more time. And any time with Jack will be precious - you are giving him memories with him mom, with the person who gave him life.

    With lots of love and prayers,

    Jeanine

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  8. Thanks my darlings, you are all so wonderfully kind and special. xxxxxxx

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  9. Jen, your boy is a better person for you having loved him - loving someone, caring about them, is never wrong. It may cause pain one day, but it makes us all better people in the end. And your love for him will not end, ever, not as long as Jack is alive, and it will live through his children, and their children, and on and on, forever.

    And you have every right to be angry, so let us have it, get it out there. Holding it in does you no good, and you need your strength for other things.

    Hugs to you, Ginny

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  10. Jen, I'm sorry to hear this. I've been following your story for awhile and was excited with you at the possibility of this surgery being the key. You are most definitely in my thoughts and prayers.

    ~ Emily

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  11. Jen-

    I've been reading along and following your story for a bit, but have never left a comment. I was so happy to hear about this surgery and the potential of it saving your life, so you could remain here with your children. My heart, thoughts and prayers are with you during this difficult time.

    Jaime

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  12. Dear, I am so sad and sorry for you. That just sucks.

    One thing that struck me while reading what you wrote about Jack... maybe you have that special relationship that just *clicked* to allow you to give him a long lifetime's worth of a mother's love in a shorter amount of time than what you deserve.

    That surgery was even possible was a surprise, right? So maybe more surprises are in store for you. I hope so. But for now, I'm so sorry that this is the news you've received.

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  13. Fight the good fight, Jen!
    Your time is not near being "UP"! And your anger is well-said.

    It makes no sense to me WHY God allows sickos to flourish and destroy while good, well-meaning folk's lives are cut short.

    Another very dear friend of mine (7 mos into a healthy pregnancy) died a few months ago along with her sweet baby girl from complications from an infection. It all happened so sudden--her husband was on a mission trip with their school during this awful ordeal and they couldn't get ahold of him right away. Everybody was STUNNED!!! I was so angry with God!!! WHY HER? She loved the Lord more than her own life! They even taught Sunday School!!!! She left behind a 3 yr old son, husband and loving family. It just wasn't "right" or "fair". I was miffed!!!

    But when I went to her viewing, somehow I understood instantly why she was here. It was completely packed with the line going WAY out the door. Not a dry eye in the house. She had touched so many, many DIFFERENT people during her 33 yr old life. (She was a teacher, coach, mentor). Funny as all get out. (I love funny people to hand around with!) Her love for Christ allowed her to reach out and connect with people without beating them over the head or making them feel condemned, I had a revelation that day....IT REALLY IS our quality of life while we're living on this earth and how we choose to spend our time. That's all we leave behind!!!

    I have to agree with your surgeon, if only to buy quality of time to spend with your precious family. You want them to remember you happy and at peace--not hurting all the time. They hurt when you hurt and that alone will stress them out beyond question.

    I pray you can find peace in this resolution and come out of it with a passion for living more than you have ever felt, you DO deserve that!

    God love you and be with you, Jen!

    Hug & A Smootch,
    Kat

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  14. So much to comment on, but I will limit myself to what you said about protecting Jack from the pain of losing you by giving him to his dad. First of all, I don't believe you believe that in your heart of hearts. But if you had chosen to do that I think he would have forever suffered from the pain of wondering why you didn't love him. In my opinion that would have been worse than losing the mother HE KNOWS loved him with all her being.

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  15. Dearest Jen, Thank you so much for sharing your feelings with us. I'm so sorry that things have not worked out as you hoped but grateful they will help you some. I pray more good things will come along and will not give up hope. As for Jack he is so very, very, very lucky to have you as his Mom however the future unfolds. No matter what he goes through in life this love between you will forever be inside of him just as it is in you. Sending hugs and prayers and love.
    ~Cathy

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  16. Here on the other side of the world, I'm sitting with you in spirit. Holding your hand, making you a cup of tea, crying and shouting, full of angry sadness right along with you. I wish with all my heart that there was something more to offer you.

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  17. Jenn,
    Shoot, what a bummer! I am so sorry to hear this. This is not what any of us wanted to hear.

    Glad to hear that you are going to go through with the surgery anyway. Still sounds radical to me!

    Yes, they want you us soon so that you don't get pneumonia or blood clots from lying around in bed and so that all your bodily functions work...bowel and bladder, etc. But you will need to be rest.

    Don't push yourself too hard at first or you will take longer to recover. Push yourself to get out of bed to walk around and take showers when you are allowed, to eat meals and to perhaps play a game with the kids or scrapbook a little, but for awhile, no housework or anything like that.

    Thanks for posting. You are loved!
    Ruthie

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  19. Oh Jenny! If we could only publish a book of your blog! What an example of peace , dignity and love you are! Your positive and able to just vent and say "This F'in Sucks-when it does"! No, life is not fair and just know that we send you our love and from around the world we are full of admiration and learning oh so much from you.

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  20. I am completely gutted for you...you are right, it is so not fair!

    Always keep your hope alive. No one knows how long their journey will last, and with medical advances...there is always room for hope.

    No matter what, your son will be strong enough to cope with what will come. You have filled him up with love and self-esteem, and your mothering is firmly a part of him now...

    Hugs and prayers I send to you,
    Linda

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  21. Jen,

    I am sorry to hear that the surgery won't be all you were hoping for and glad to hear that at minimum you are a candidate for the less radical kind that will at least give you some better quality of life. There could be different and more medicines etc that can see you though later - I am glad to see you are keeping hope for that. You are strong and I just feel that there are still great things ahead in life for you.

    My brother died young just this last January and my Mom has terminal cancer - it has spread to beyond what can be treated. I like to think God wants good people like them with him and that is why sometimes good people do have their lives cut short. It is a very simplistic thought, but it gets me through the grief I feel for my brother and the sadness I feel at the thought of losing my Mom.

    Take good care of yourself Jen - you are an amazing person!

    Jemma

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  22. love you!

    over the oceans!

    through the mountains!

    with the anger!

    together with the sadness...

    along with HOPE....

    for more tomorrows...more laughs with your sons,

    and always giggles and tears with friends!

    I love you xx

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  23. Shit Jen. I'm so sorry and so disappointed for you. It's not fair, not fair at all. In fact your cancer is just one of the suckiest, crappiest, fuckiest, things that could happen. I'm sorry. I wish they could cure you, I really do.

    And I HOPE there's some bigger meaning out there. Something bigger than us, some spiritual reason for this that makes some kind of sense. And I think there is.... don't know exactly what, where, why, how, but SOMETHING.I hope....

    And I think loving Jack as you have is just a complete and total blessing in his life and always will be no matter what happens. Truly. He'll always have that self-esteem and knowledge inside him because of how much you've loved him....mother-love....it's a very valuable and powerful and wonderful thing, Jen. And I'm sure he'd rather receive as much of it as he can, whether for a shortened time period or not, than have less of it because you're afraid of him being hurt. (Although, saying that, I really don't mean to be glib or underestimate your fears. I can see why you're upset - It's an awful lesson for a young boy to have to learn, isn't it? that love can hurt so much. But I still think having so much of your wonderful, intense love will have been worth it for him. Absolutely.)

    Jen, I can't offer much comfort, but can only let you know that I'm thinking of you. If we lived closer I'd bring over a bottle of wine (or two) and drink it with you and have a good old (cranky, frustrated) sobbing session.

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  24. Hi Jen,

    I have read your blog for awhile and have never commented. I am awed by your strength, your courage, your love as a mother. You are quite an inspiring woman. I was so hopeful for your surgery. I will continue to keep you and your boys in my prayers. I have 3 small children myself and all I can say is you have given Jack every bit of yourself in his early years which is shaping the rest of his life. His core beliefs are already there or on their way. He knows he is loved, he knows he is special. You have given him these gifts so clearly and they will travel with him every day for the rest of his life. He may (or may not) lose you but you have created the strongest foundation for him that he will still flourish and flourish well. He is so very lucky to have a mother like you even if it is but for a short time. You make every moment you can count. You have a close bond, he knows your love so clearly. Many children are not as lucky.

    I am thinking of you and praying for you,
    Anna Katherine

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  25. You are really strong. Your boys are very very lucky to have you for a mom, no matter what happens they are blessed.

    susie

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  26. I am so, so, so sorry Jen.

    I am thinking of you and sending you hope and good wishes.

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  27. Oh Jen I am shaking and saddened beyond belief. I was so sure that you would have the surgery and be okay. I guess we all want a happy ever after ending for you and your boys. And your raw words and feelings so hit my soul. It is so true that there are no answers and we don't understand how these things can happen to the best among us. I don't know what to say except that there must be a reason. There must be! Please lean upon us, vent, cry, yell at the top of your lungs, hope, dream and don't give up. My son wrote a song for a dear friend dying of rhabdomyosarcoma and one line is "don't give up the fight in the darkest hours of the night". That doesn't mean that you shouldn't acknowledge the darkness though, just move through it, reaching out to those around you to help guide you. As for those dear boys - the love and joy that you have given them was not something you should regret. To be loved in this lifetime, even for a small time, is a blessing beyond anything else. They will carry all that you have given them with them, into their adulthood. They will know that they have a mother who doesn't give up, who loved them beyond anything in her life and did all she could to remain with them. All of that will far outway the pain they will feel. Jen I'm showering you with love and friendship and prayers. Lisa L.

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  28. This isn't fair. It just isn't. I can't wrap my head around why things like these happen. A friend lost her infant daughter this week - she only looked away for a second. I can't count how many times I've looked away for a second - and my children are still here. What did I do differently? She made a mistake - a mistake that is only a mistake because of what happened. There are people out there willfully killing other people, sick people who hurt others...
    You, a wonderful person, have this horrible disease - and many like you are dying of cancer everyday. I just don't understand. I can't make this into any sort of greater 'plan.' I just can't. It doesn't seem right for a mother to lose her baby - or a baby to lose his mother.

    I am sitting here hurting and disappointed, crying for you and for my friend. I feel so guilty for the time that I have with my children. What did I do to get so lucky? But I am looking at things with a new perspective. I know that things can change in a heartbeat - things are just that fragile. Maybe I don't have as much time as I think. Quality might be everything.

    I think that the operation for 'better quality' is disappointing, but still worth it. It's so hard to say this, and I swear that I am not some hard-hearted curmudgeon - but you could be cured of cancer and hit by a bus the next day. Quality is everything - no one knows how much time they have left.

    I am sorry for this convoluted comment. I am a big ball of unrestrained emotion right now. The tears won't stop. I am truly so very sorry for your situation - I would be angry too. You and Jack, your whole family - are in my thoughts all of the time.

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  29. Jen,
    I am so very sorry to read your post this morning. You are right, life is so unfair. Pray and don't lose your hope that you can be cured. God has the last word, not doctors. I am here for you praying for you. You vent however you need to vent, it's your right. We are here for you dear. Stay strong.
    Hugs,
    Rose

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  30. You most assurendly did not deserve to have this happen to you. I am full of hope for you and this new surgery!! It will be difficult, but you have already proven your strength. You are a fighter. Your son has a wonderful role model in you! Still praying for you! :)

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  31. Jen - I hope and pray that it buys you enough of the good time for them to find the magic cure and give you enough more.

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  32. Jen, I prayed for you today, for you to experience peace and wholeness even in the face of such huge change. You are not alone.

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  33. hope makes the world go round.
    you can't give up hope. i don want you tp spend time depressed. wat good dpes it do? for your own sake, no tha your life is still priceless and so v. meaningful. dont lose sight of that.
    i know i dont know your real pain. i hope i have not overstepped the boundaries.
    take cre. love,

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  34. PS: i am so not drunk when i wrote that so excuse the typos. i was typing with one finger and then the keyboard was acting up, HA!

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  35. My heart aches for you and Jack. The surgery is so extreme! You are such an amazing warrior woman. The battle you fight for more time with Jack is so loving and selfless. You stay in my thoughts....

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  36. Jenni darling-
    I still have great great hope that the time you have left with your boys (be it 2 years or 20) will be miraculous and wonderous. This surgery sounds like a good option to help with the pain--something that has been such a tremendous burden on you. I hate that the news was not that a cure is around the corner. I love you dearly.

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  37. I'm so sorry to hear this. I wish they'd initially presented the idea to you as less than a cure, then waited to see what the surgeons said to offer more hope than that. I think the disappointment makes it worse. Am just so sorry you have to go through all of this. Hugs.

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