Prognosis and children…

I have been struggling lately with the “3-5 year” prognosis that I was given after surgery by my neuro-surgeon. It’s not that I believe that number, it is just hard to get that number out of the forefront of my mind. During my support group last week many people stated that the number they were told after their diagnosis is the one that they remember so significantly, so vividly. One woman was given 6 months…. that was over a decade ago 😉

So earlier today, while trying to relax in the tub, I prayed that the Lord would show me people who have lived with my type of cancer (anaplastic astrocytoma) for more than 5 years. While researching tonight the way to combat the side effects of Kytril, I came across not one, not two, but an entire list of people who have lived way longer than the 3 -5 year prognosis that I was given! One lady, much older than I am, is still alive after 18 years… that did my heart good.

I know that the prognosis is only a number, gathered by the average (or mean) of a group, but I can’t tell you what it does to a cancer patient when a doctor tells them they only have 3-5 years to live. I cant put that feeling into words, much less wrap my brain (or heart) around it. I found myself tallying up what my kids would be doing in 5 years

Easton would be 15
Elijah would be 12
Emma Grace would be 11.

That is not enough time.

I think that as a mother with cancer, my kids become the center focus of my treatment. I bargain with God “If you will just give me until they graduate, I will then know that they are going to be okay.” But when is any child okay after a parents death, especially the death of their mother? When is the “right time” in a child’s life for a parent to die? These are the thoughts I have on a daily basis, and admittedly they aren’t upbeat nor are they positive.

But they are real.

I wonder how other mothers battling cancer do it. I wonder how they juggle chemo and kids. I wonder how much information is too much information for my kids to digest. I wonder how other moms manage the days when they can barely get out of bed, and still have a house to run and kids events to attend. My kids see me at my very worst, and I wonder if that is what is best for them, but then again I don’t want to hide my bad days from them because that isn’t reality either.

That is why I have a love/hate relationship with the drug that is suppose to save my life. The days that I can not function, I feel that I am being cheated out of time spent with my kids. But then I think about how much time chemo is going to give me, and I muster the strength to go another round. I just hate having my kids ask me why I didn’t go to church, or why I am still in bed. It’s not that I don’t want to answer them, it’s just that the answer is just so freaking unfair.

But tonight, after reading the survivor stories of so many people with my type of cancer… I feel refreshed, I feel empowered, and although I am dreading the next round with chemo…I can’t put into words how much I am dreading it….

I will muster up the strength to go through it again, for my family… but not just for them.

For me too.

Out of the depths of desperation, rising from the ashes….arrives Faith

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Comments

  1. Heather,
    I have been reading through your story for some time now & greatly appreciate you sharing your journey with us. God is wonderful how he opens up information for us just when we need it. He sends His blessings through your support group, the Internet, this blog… so many ways. Ask & you shall receive – He will give you the strength to carry on through your chemo sessions.

    God Bless, HL

  2. You know, Heather, I think of you a lot these days. It’s far too easy to put myself in your shoes and feel absolute terror at the thought of leaving my son when he’s so young. I find myself wondering how I would handle a cancer diagnosis. Would my faith in God falter or would it grow stronger, as you faith obviously has? Cancer is quite rampant in our family history so it’s a very real possiblity for me.

    The questions and fears you pose in this post are ones I’ve thought myself. And you’re right, there’s not enough time…no matter what.

    I’m glad you found a list of cancer survivors who have lived longer than the 3-5 year prognosis. You will be one of those people too!

    I’m also glad that you found a local support group. Although your online friends are offering up prayers, I feel better knowing you have people in real life to lean on as well, people that are walking in your shoes.

    Know that you continue to remain in my thoughts and prayers!

    May God bless you and your family!

  3. Heather,
    I’m not going to pull any punches. There is never a good time to lose your mother. Jim’s mom died of breast cancer in April. He is 30 something. That didn’t make it easier. You are fighting to give your kids every day possible. You are also imparting truth into their lives. You are making not every day count, but every moment count. Every child’s mother should do that. I should do that, but I do not. You are not only teaching your readers about faith and love and life, but about mothering. Thank you.
    TK

  4. I’m bawling right now. I’m going through some trials right now, but they are all (hopefully!) temporary and in the long run won’t amount to anything. Here I’ve been stressing and fuming and worrying…Thanks for putting some REAL perspective on it all.

    I have so much to be thankful for!

    And so do you.

    May God grant you another bazillion years and may they be full of joy!

  5. I know this post is a couple of days old, but I’m sure it’s still a fresh emotion. And even tho’ you’ve had tons of great encouragement, I just wanted to add mine (and hope it is encouraging!)

    As I was reading, I was just reminded of Hezekiah. He thought he was going to die. Then he asked God to prolong his life. And just like that God gave him 15 more years.

    I know the doctors are saying 3-5. And even if they could see and know all and IF that was true physically–God still has the final say. But the best part of that story is that Hezekiah asked God and God said, “Sure!” And He’ll do the same for you!

  6. I don’t have cancer but I have similar thoughts at times. I lost my mom in January of this year, I’m 25 & it was too soon. Losing her brought the reality of death to the forefront of my mind at times. I can’t imagine thinking about it with an actual number in mind. I wouldn’t give that number any power though. I think it’s good that your kids see you in your reality, whatever that may be. As they grow up & face challenges they can look to you and know that if you still do your best each day, they can do the same no matter what they are facing.

  7. Hugs and prayers. You are loved by so many.

  8. no matter what, in 5 years, or 25, your kids will be glorifying God and serving Him in whatever way they see best and loving you in the process, because of the things you have taught them by word and example. I know you help me every time I read your posts.

  9. I just want to tell you that my husband Dave’s prognosis was only 9 to 12 months. He had a glioblastoma. But Jan will be four years and up until this past month, he hadn’t had any recurrence (and with a GBM you ALWAYS have recurrence). I decided that day when they told me that, that I do need to be informed, but their report is nothing more than an educated guess. The doctor’s cannot overrule God. God is the only One who can say, “time’s up.”
    Right after Dave’s surgery God spoke to me in an audible voice while I was driving and told me “Don’t be afraid for David. Life and death are in My hands and My hands ONLY. Ultimately sickness has NOTHING to do with it. You must trust Me and trust that My timing is always perfect. When I say it is time for David to die, there isn’t anything you or any doctor can do to keep him alive, BUT until I give the final say that it IS indeed time, there isn’t anything any accident, illness or even any devil in hell can do to take him out.” Now God wouldn’t tell me David will be fine or that he won’t, just to trust Him. I found the most peace in that…definately the “peace that passes all understanding” because I can’t even start to explain how I felt during that time. I told David that while we were there in the hospital I almost felt guilty because so many people around us were facing terrible situations of sickness and trauma, but I felt so securely enveloped in the Hands of God I felt like nothing could touch me. I literally felt like I was floating and my feet were not even touching the ground. I said all of that just to say…..when dealing with cancer (or any sickness) we need to be as informed as we can and educated so we know what we are up against, but I really believe that our “faith” often is not just believing for healing…it’s so much more….our faith needs to say…”Lord I love you and I TRUST YOU WITH MY VERY LIFE and with the lives of my family. I know that you have a plan and a purpose for each of us. I trust you to help me fulfill the plan you have for me whatever it may be.” When we learn to truly trust Him with “our time to go” whether it be today, a year, five years or fifty….that’s where we find true peace and contentment. We already know that God already knows exactly how many days each of us have been allotted. I truly believe He goes out of His way to give us as much time as He can within His perfect will for our lives.

  10. You hit the nail on the head, Heather. “More time” is NEVER “enough time”. I’ve lived it with my Mom. God gave us much more time than she was originally told and as grateful as I was/am, it wasn’t enough … at least, not from my viewpoint. I’m only 33 …. she was only 58 … it’s only been 8 months, but it feels like a lifetime. As much as I still need my Mom … it’s not in the same capacity as your children need you. :-( I shall continue to remember you to our Father who can do FAR MORE than we can ever ask or IMAGINE!!! Praise His name! Keep the faith! ~ And yeah, those numbers, they stick in a brain like gum in hair, don’t they? :-( May it not discourage you from your fight.

  11. I first want to let you know that you remain in my thoughts and prayers and that I am believing for your healing.
    Izzy was given 48 hours. Not cancer i realize, but doctors are not always right… A woman who works with my mother and has a very special needs child was hit by a car last week on her way to work. Her husband cared for the daughter during the day while she worked and provided insurance for the multiple medical needs of the daughter. Today the doctors have said they had to remove over half of her brain and give her 1% chance of living. Makes my heart so sad. I pray daily for God’s love and protection over my life and the lives of those I love, but this life is a temporary one. I see that more everyday.
    love to you Heather.

  12. I can’t even begin to imagine what its like to deal with the chemo. With my two battles with cancer, both times my tumors were encapsulated, preventing their spread, and while they tried to talk me into chemo and/or radiation after my breast cancer in 1999, I refused. My liver cancer doesn’t respond to chemo or radiation…its get it surgically, or not. So I was incredibly blessed and fortunate.

    About the kids…my kids didn’t get to see me until weeks after my first surgery. By that time, I was extremely frail looking (I’d almost died) and they were in shock. For the rest of the YEAR last year they treated me as something fragile, easily damaged, and it was really really hard on them when I came home because they couldn’t associate the emaciated, weakened me to the mom they’d seen leave them 7 weeks earlier. To this day, I believe that had they been there to see me through my entire ordeal, *I* would have recovered better, at least mentally, and *they* wouldn’t have been so terrified at the changes they had no chance to see occur gradually.

    Every moment you have with them is precious. I pray for you daily. *hugs*

  13. When I read this ..I agree its not long enough.
    When I was first dxed with a different cancer non hodgkins lymphoma a blood cancer that was stage 4 and in the bone marrow. No donor available.
    They told me three months. At the time my kids were 11, 13, 15 and we had a nephew living with us who was 16. I looked at the doctor right in the eye and said *so its terminal* He said * yes however very treatable* With his word *treatable* I felt okay we can fight this thing.
    Its funny I look back and think of one thing he said ..And that was say a prayer for me that I have the knowledge to fight it with everything out there.
    In the first three months it was grueling..I won’t lie. It was. But my focus stayed on making sure the kids knew I love them and getting them ready if I didn’t make it. But something told me I wouldn’t die. Something deep within said ..*You will be ok!* Just a gut feeling I guess.
    I remained focused on family and day to day stuff. No matter how rotten I felt mentally emotionally or physically..I still had my family right there pulling for me to survivor. So when I think back it was a grueling time but a very sweet time to know how others felt about me and all of us.
    Time no matter how much we have is so precious.
    I would of never thought back then I would be here ten years later and still doing relitively well. I still deal with cancer daily so does my family.

    My doctors never dwelled on the issue of how much time I had left after the first time. However they told me that my disease was chronic and would return which it did in 2000 and 2001 . I was treated with clinical trials and I am here to say…Give it all you got and what the doctors have to help you move forward. With strong faith its doable.

    As a Mom I don’t thing there is never enough time with our children. When we have cancer..we are always fighting the issues of time..I wanted more

  14. Good Site! Keep Doing That!s

  15. I just stumbled across this post, which is from 2007 already. You got a 5 year prognosis and you’re still alive in 2014! Maybe your faith really has helped you!