Tuesday, 25 March 2008

When Life Hands You Lemons....

Cheesy but true....You Make Lemonade!!! Well why not, you know, you've got the lemons anyway, it kinda makes sense to do something constructive with them doesn't it. Only problem is sometimes you just don't have enough energy to go around making a whole lot of lemonade. Sometimes you just need to take a rest and kind of wallow in amongst the lemons for a while, slowly taking a good look at the lemons, turning them over and over in your hands, checking out the texture, the size, the shape, just in case you've missed something somewhere, just making sure they actually are lemons....yup they are lemons. Alright I'll get off the lemon metaphor, I just kind of got stuck in it actually. Still it is true, it is more about what you do with the hand you're dealt. I firmly believe this. I am not sure why some of us seem to go through some things and others through things that are totally different, I don't claim to know the answers to these and other perplexing questions. I don't know why innocent people will die of cancer or heart failure or countless other diseases and accidents and why pedophiles and rapists can get away seemingly free of any kind of punishment. We know they do, so let's not kid ourselves. Perhaps though, it is not about this life as much as it is next...we definitely do not have all the answers, which to my mind is why we should try to make lemonade. Take some time, check out the lemons for sure, make sure they are what they seem and when you are sure, have a good long think about what you can do with them. You always have choices.

I have taken some time lately, I haven't been on the computer for almost a week which is a long time for me! I have needed to do this, I wasn't exactly sure why, it was just instinct. Now that I have done it though, I realize I just needed to regroup, to sort out what I was going to do about these lemons. I am trying to come to terms with the fact that I will most likely be dead within about 3 years. Not because I am negative or maudlin or because I am particularly strong, it is because I am the type of person that needs to deal with every scenario in my head, I need to come to terms with things that are likely to happen to me or to those I love and care about. I realize a miracle could happen and I may last longer than 3 years, I realize it's possible that a huge miracle could happen and I could shock all the medicos and last years longer than that but I also realize that Doctors are pretty accurate these days with these types of diagnosis's and I know that I have run out of options in terms of surgery, in terms of radiation, and after this lot of chemo I have also run out of options there too. There is hope of a new trial possibly, if I can live long enough to qualify for it, however, at best that is risky and no guarantee. So, I am the type of girl who needs to know the worst case scenario, or most likely scenario and come to terms with that somehow in my mind. I need to dwell on it, turn it over and over, think, think some more and keep on doing that until I can come to some place of acceptance or some semblance of acceptance. Not easy but I am working on it and this is why I have needed time out from the computer lately. Just time to think, to feel, to adjust. I have done some reading and have found some interesting and helpful things, not the least of which is that most people that are diagnosed with cancer will also undergo Post Traumatic Stress Disorder as well. It appears to go hand in hand. This information helped me a lot as I couldn't understand some of my behaviour, it was as though I was frozen, paralyzed, I still am to some degree, truth be told, but at least now I am understanding that this is part of PTSD. I thought I'd have been a lot more pro-active than what I have been and I have been quite horrified at the fact that I haven't really done much at all. This is not unusual, it is not helpful either, but not unusual and it can be treated. I am looking into some counseling to help me with this at the moment so I do feel there is a light at the end of the tunnel. Apparently people diagnosed with cancer often go one of two ways, either flight (me) or fight. You might think 'fight' would be the better way to go but not really as this is the type of person that will go and go and go, do everything possible for themselves but feel as though they must do all these things or they will die, there is a desperation attached to it and it is all about saving their lives not truly embracing a lifestyle as such. Trying to meditate becomes a stressful event, too much pressure makes it impossible to achieve, there is a sense of desperation to all that you try. True there is a fine line at first glance but the further I looked into this information the more I liked what I saw. This is the outcome I would like to get to and I now see this is where I have been heading lately as I come out of the fog of despair and fear. 'Fear dispels, self mastery begins, you begin to live well with your illness, you practise self care and begin to prioritise your needs. The motivation is different - not initiated by fear or desperation but rather by a desire to search for life meaning. Meditation, awareness and mindfulness mean that you begin to 'space in' rather than 'space out'.' Which is what I have found myself doing a lot of, spacing out that is. Not a good place to be but I guess it was necessary in a way, perhaps to protect me a little while I came to terms with what was happening. I'm not quite sure but I do know that there comes a stage after dealing with PTSD that is exactly where I want to get to, it is described in this way:

- Mindfulness is a part of your day and meditation flows into your day as well.
- There is innate trust and faith that you will be okay whether you live or die.
- A sense of self mastery in your life has developed. The struggle has gone.
- Your boundaries are healed and restored allowing you to exude a spiritual resilience and presence that others notice.
- You are living authentically, true to yourself.
- Relationships with those who matter are healed and communication is working for you.
- Life has become easeful.

For the first time I can see that those things listed above are possible. Definitely if I didn't have children to worry about leaving behind. My struggle is going to be trying to get to this place whilst being afraid for Jack. I am so terribly afraid for him that I haven't been taking time to focus on me and how I feel in regards to me as separate to Jack. I know all of this takes time and I don't want to be hard on myself at all, that is not what this is about, of course I am going to have trouble separating myself from Jack, I wouldn't be a mother worth her salt if my first concerns were not my Son. I believe any Mother of a 6 year old would be terribly concerned at leaving them motherless and not only motherless but with them seeing you become more and more ill as time goes by. Not something anyone would wish for their child. Still, I am aware that there must come a time where I look at this from another perspective and that is just from the perspective of how I feel, apart from Jack losing me, how I feel about dying young. I have been so worried about Jack that I kind of feel as though it would be a luxury to only have yourself to worry about. I honestly think I would see this as chicken feed compared to how I see it now, if I didn't have my young child to worry so much about. That could be really wrong of me to say but I am just winging this and typing as I feel it or think it and that is pretty much how I feel. When I stop for a minute and think,' wow just imagine if what was happening to me didn't affect Jack at all, how easy it would be, how great would that be,' it is like a huge weight lifted off me, so for me it is not the fear of dying it is the worry of leaving Jack, this is what I need to come to terms with somehow because this is my worst fear. I need to somehow know that he will be okay, eventually. I guess, I know eventually he will be, it's not eventually, it's right when it happens and those first few years, that's the part that I am worried sick about but you know what - I am so worried sick about it that I am scared I am making the cancer worse, ya know? You're not supposed to get so stressed out and here I am stressed to the absolute hilt for Jack. How can I not be? I guess all I can do is hope and pray and keep trying to make lemonade. I don't know anything else to do about leaving him. I may just not have a choice and that's the way life can be sometimes. Harsh isn't it. But Lemonade I guess.


  1. I feel for you, deeply. I went through my own brief bout with colon cancer and surgery a couple years ago - I'm 49 now. My boys are grown up, though, no little ones to worry about. But I certainly thought about how it would feel if things had been worse for me, as they are for you. This thing might still get me someday but I'm nowhere hear where you are. I am so sorry you were misdiagnosed at first - I was very fortunate to have excellent doctors who caught mine very early on.

    I don't think many people realize that colon cancer kills far more people than breast cancer does, and yet, it certainly doesn't get the attention or the sympathy. It just seems icky and when you suggest to people that they really ought to get a colonoscopy they find that so traumatic.

    So sorry for all you are going through. I've blogged about my situation before, but am not facing the issues you are. Thanks for being brave and letting people know how serious this disease is, and giving it such a personal face. We struggle so often in our silence, and sharing pain is never easy.


  2. HI Jen, i want to offer you my friendship.... will do my best to spend time with you each day. I'm headed out the door with my toddler... just wanted to quickly ask you if you've heard of the book "A new Earth" by Eckhart Tole. It's $14.99 at Borders and $7.99 at costco. His approach is a little philosophical but he makes a lot of sense. Not sure if it's what you want to read right now. but he says a lot about living in the present. I know you are worried about Jack... who wouldn't be? Anyway, Oprah and Eckhart Tole have a live web class tonight at 9pm eastern. if you just want to check them out, you'll need to register at oprah.com. If you don't feel like it, that's fine too.

    take care and i'll talk to you again. God bless.

    I have a toddler who's almost two.

    God bless, I love you.

  3. Jen -

    Space in. I had not heard those words together before. What you write about here, how you would experience this all so differently without Jack, speaks to everything. How relative things are, how much our vantage point determines our experience. What is the difference between perception and experience and the stories we tell about them? Then it seems ridiculous to ask such theoretical-sounding questions when you're talking about lemons.

    I'm with you.

    xo Jena

    P.S. "Chai" - the Hebrew word for "life" - is comprised of two letters (chet and yud, I think) which correspond numerically to the number 18. Thus, tzedakah (or charity/justice) is often given in multiples of 18. Just wanted you to know. Wish I could give more.

  4. The blessing is that your older son has moved back and promised to take care of you and Jack. Isn't that nice, to know that Jack has an older brother who will look after him? I came across this quote in one blog: ..." the longest journey is the journey within..." I believe this journey is just starting for your sons. How blessed they are to learn much in life at a young age. Although it is something you didn't wish would happen to them, God, in His perfect wisdom will make everything make sense to all of you in time. I know that you can give your best to your boys today. You can give them all that you can today, limitations and all. Your best will give you that peace of mind and heart and they will see that in you, and find comfort in that.

    have a great evening Jen!


  5. also as I read your posts I know I have much to learn from you. Thank you for sharing your life with us.


  6. Oh Jen, with my son now safely in adulthood, I can only try to imagine how it might have been if I'd had to contemplate leaving him when he was so young. The very thought brings my heart into my throat. And my heart goes out to you right now. You have done and are doing the thing that will stand most to your precious Jack for his future - letting him know that he is loved. Your courage in naming your fear is immense. Bless you.

  7. Peace to you, and trying to send comfort across the miles.

  8. thank you for teaching us sooo much about life !!!

    and geez....what a writer you've become !!!

    prayers, prayers and more prayers....xo beth

  9. hey jen...just wanted to let you know that i'm still here listening. i posted about the auction on my blog and also answered the question you posed a while back if you're interested. take care dear. we love you.

  10. Jen,
    Reading your words, I feel panicky. I can't even imagine what you are going through, having no children of my own.
    I've been reading for a couple of months and I'm so happy to see that you are on the crest of obtaining some sort of inner peace.
    You are one strong, brave and amazing mother and woman.
    All of my good energy is being sent your way.

  11. Hi Jen,
    Glad to see you're back and that you took a much needed break. About the clinical trial, is it for Avastin? Can you come to the US and get some here? Sort of a silly question but it was just a thought I had. Not that travelling is any small feat especially with Jack and all but again, just a thought.

    Fwiw, my dad lost his mom when he was 4. She was this amazing woman that left an indelible impression on him and taught him so much about life in such a short time. I have to say, he is the most grounded, kind and generous person I know and he attributes it to his mom.
    I have no doubt that Jack will be an amazing adult as he's already far surpassed kids his age in depth and kindness. You've done and are doing a great job and I truly hope that you are around for decades more than anyone anticipates!

    Sending you healing thoughts and lots of love,

  12. It is in your mother nature to think of him, worry about him, give your energy to him.
    And it sounds like you are beginning to have space for some of your own experience to move around as well.
    You are on a journey. I know its not the one thought you'd be walking. And yet you walk with it as hero, as warrior.
    love to you.

  13. Jen-
    There is so much here in this post. It is rich and beautiful and lush--just like you. I know I will come back to it many times to think through all the kinds of issues you raise. I sense a new centeredness to you that is beginning to emerge and beautiful to witness. I am so honored to be in your gaggle of friends, to be a witness to your journey. Love to you--and more soon as I digest this thougthful, beautiful post

  14. I agree completely that the kid thing is what makes it all difficult. I was at a point where death didn't frighten me- until I had kids.
    Cate is so right about how much you can do for your son now. And really, some of what you can do for him is showing him your courage in facing what you are facing.
    That said- here's my religious part, because I don't know how to go around in life without God- it's just too scary. God is there with you and your boys. And S/He brought Jack to you for what you can give him, all that love you hold, knowing that you wouldn't necessarily be around for all of Jack's life. So, the comfort is, S/He will take care of Jack in the future, too. It sounds like that care is being worked out. Y
    ou are now in my heart. Blessings.

  15. Jen - just to say I'm here...listening, reading, thinking, loving, being, crying, caring, wondering, wishing, praying, doing, nestling, cuddling, being with you. xx

  16. i forgot to add that i am praying for you continually Jen and I know that God hears all the prayers of His children. He is the ultimate comforter.

  17. sweet Jen,
    there is such strength coming from you under the deeper layers of that fear. let that fear go and turn it into TRUST. trust that God in His grace will carry Jack through...God will take care of the details. it's what He has done in my own life...yes, what i have struggled thru pales in comparison to what you are dealing with, which i have always said, is a mother's deepest fear coming true...but it is really the only choice left...and honestly, it is the only choice any of us can make on a daily basis. i have no guarantee that i will be here tomorrow to mother my sweet babies, but i trust that no matter what happens to me, God will take care of it for me. turning our fear into trusting God is where I find my own true inner peace.

    i truly believe that our peace will come not by telling God how big our storm is, but telling our storms how big our God is....even when the storms of life are as big as the one you facing.

  18. Hi Jen,

    I've just read your blog for the first time. I was directed here by my sister's blog, eclectic recovery. I don't have a terminal disease, but I know a little of how you feel. I worry so much about something happening to me because of how it would affect my two children. For this reason, I always work on making sure their relationships with our extended family is strong. I pay attention to who they are the most comfortable with trying to decide who would best take care of them. I also would want to leave them lots of pictures, videos, and a diary just for them so as they grow, they can still get to know me, know the wishes I have for them, know how much I love them.

    My heart is with you

  19. Hi Jen,

    I have been away and not blogging but I have always been thinking of you. Sending you strength, love and peace on this day....