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’m so glad that you’ve found a support group. I know that you’ve received so much support from your family and from many, many people around the world, but I think it’s always good to be able to talk to people who experience the same things that you do.

    And your situation is so unique from most of us.

    But the thoughts that play with your mind are so normal for someone with a diagnosis of cancer, esp. on of the trickier cancers,and I’m so glad that you’re able to talk with others about it.

    And I’m so thankful that you’re sharing with us. It’s touching to read about your thougts and feelings.

    I wish I could offer wise advice, but know that we love you and pray for you daily.

  2. There is only One who numbers our days, and He is trustworthy! Praying for peace for you tonight, sweet Heather. And for 50 more years. 😉

  3. Praise Jesus for helping you with this FIGHT!!!

  4. Surrounding your with prayer, Heather.

    Just as words fail to describe your dread of chemo, words also fail to convey what’s in my heart…

    I remember the exact moment, standing next to my son as he was told he had less than six months to live. That was seven years ago. The doctor’s were simply dealing with statistics. The journey is long. But we’ve since learned that ultimately we’re dealing with God whose plans aren’t based on statistics.

    But like I’ve shared before, in that moment the world turned upside down and it has never right-ed itself. Some of the changes have been “gifts” attained no other way. The intimate reality that life is both fragile and resilient. Precious, full of promise but promised to no one. Other realities remain like the haunting of a ghost. Tests, retests, results, more results, living life in 3 -6 month increments, letting go, giving up, waiting…

    Yet underneath it all, He remains Emmanuel.

    Again, I thank you for sharing your thoughts and feelings. Human emotions mixed with faith leaveyou tucked safely in His heart.

  5. You can do this! You can BEAT THIS with bells on!!!! I can’t wait to be reading your blog (or book) in 20 years saying, I remember when she beat her cancer and now look at her, God had big plans for Heather…and He is Faithful!!!

  6. Angie Davis says:

    Heather,
    I was (am) a child whose parent battled cancer-twice so far. One of my earliest memories was pushing my dad in his wheelchair after surgery for testicular cancer…….the treatments were horrible. They were called cobalt treatments back then, and very little was given for nausea. Then again when I was 20, right after the birth of my oldest child, he was diagnosed with stage 2 colon cancer. More cancer, more treatments. And you are right, there is no age a child is ÖK with losing a parent to cancer or even a diagnosis. Because no matter how old you are, once you face the possibility of losing a parent you instantly become a child again. Happily that was 18 years ago and he is cancer free. But I still think about it–alot. Every time my dad has a checkup or his colonoscopy or gets sick, it is at the forefront of my mind. So your children will have to adapt, like myself, to the “ghost” of cancer that will linger in all your lives when it is time for your CAT scan or you have some vague symptom. But , honestly, this will also make them better people. Better husbands, better wives, better mother and fathers to their own children. Because they have learned the valuable lesson of taking nothing or no one for granted. They are now learning what it takes most people their whole lives to learn….what is truly important, what really matters. This lesson honestly does make for a happier life. It causes you to surrender those things that do not matter, and to focus on what really does.
    On a different note we have a family friend named Sarah who had the same type of cancer as you removed 12 years ago. She was in her twenties and she is still doing fine.
    May that peace of God that passes all understanding be upon you tonight.

  7. You are facing my biggest fear and I’m sure every other mother. When I think of this, I always think if God is big enough to take care of me, He’s certainly big enough to take care of my children after I’m gone. Praying for peace for you.

  8. The Lord is truly your strength and it shows in your writings. I pray that He continues to show you such beautiful things. 🙂
    JoAnn

  9. Oh, that would be so difficult to get rid of that “number.” Your days were planned out long ago. I pray that God would remove that number from your mind. Satan wants to steel any joy you have, however he can. He wants to distract you with the time you get to spend with your children. I pray for strength and peace to fill you as you go through this difficult time. Know that you don’t have to fight or do it on your own. God has you in His hands. I am praying for complete healing and a long life.

  10. Heather,

    You continue to be in my thoughts and prayers every day. God did not make this cancer happen to make your life and family’s life miserable. He is using this to mold you and shape you and everyone around you to be the people of His Kingdom. Your thoughts and writings are so humble and inspirational and I know you are being used as a vessel for Christ.

    I also believe that attitude plays a big part in the healing process. And I believe you will survive this cancer in ways you never expected. . .hang in there and take one day at a time!

    Blessings, Laurie in TN

  11. Sweet Dear Heather,
    This all breaks my heart, I cant know what you are feeling or going through but I can tell you that my heart does ache for you and I am storming heavens gates as are 1000’s of other on your behalf! The Lord loves our children more then even we can imagine, I pray for peace and comfort for you, for the children and your family! I pray for healing and many many more years with your precious family!

    (((Hugs)))
    Tiany

  12. I don’t think anyone ever feels like there’s enough time. I know my days here are numbered, that God set my timeclock the moment I was conceived. I don’t know how much time any of us have, and like most people, I get caught up in the great “What if’s” in life. Mostly, I just pray that I’ll have enough time to do the things I’m supposed to do, the things that God knows I’m supposed to do. I’m praying for the same for you.

  13. campstamper03 says:

    Heather,
    I know what you are facing. When I was diagnosed, I asked God to let me see my youngest daughter finish high school. Now 13 years later, I’ve seen all three of children marry, and they have given me 8 grandchildren with number 9 due in February. Now, I just want to see them grow up and to remember their grandmother. You see, I have a cancer that is not cureable but through a bone morrow transplant I’m in remission. We always have those numbers there and no matter you can’t forget them. You just continue living your life the way God wants you to and he will continue to bless you, take care of you and he will manage to convey to your children what they need to know to give them peace of mind as well as you. I’m sure your children understand far more then we give them credit at time. Have faith that God is taking care of them while you heal.

    Hugs and Prayers,
    Norma

  14. So good hearing from you again. I have been checking in sporatically. I will know how to pray.

    I concur with the median life expectancy number. Always in the back of my mind as well. Just remember that it is a number from the medical community NOT God. For He has already ordained our days.

    kate

  15. For some reason, you’ve been on my heart all day today.

    No brilliant words of wisdom, just wanted you to know that I’m praying for you.

  16. Heather,

    Unfortunately, I haven’t posted on your blog before. But I have read it faithfully for months now. Don’t ever change your positive attitude. It’s because of that and your determination that the years given in a diagnosis is nothing more than a number. People with your positive attitude and determination affect the outcome of those “numbers” every day and change them for the better. God bless you. You are a beautiful soul, a true inspiration and a gift from God to all of us out there who are daily being inspired by your posts. If I am ever faced with what you’re going through, I want to be just like you and have the exact same attitude and determination that you have. Thank you Heather. Thank you for sharing your story and making all of us reading your blog to appreciate and live our lives much differently than we ever would have if we had not been touched by you. You are and will continue to be in my prayers daily.

    Leisa

  17. Heather,
    I have been there and done that!! I finally had to come to the conclusion that I have absolutely no control over how long I will live. I also had to realize that doctors are not God and cannot give any number. I also had to realize that God is God and that He had ALL of my days numbered before one of them came to be. Psalm 139 was such a great comfort when I realized that His thoughts toward me are precious and number more than the sands of the seashore! He will do what is best!
    Praying that His grace will be sufficient and His mercies new every morning for you!
    Love,
    Gina

  18. I think about this often when you come to mind… wondering how on earth a mind wraps around such a thought about time… my mind can’t even imagine it and my heart just hurts to think of it. There just aren’t words, sometimes, Heather… so I’m just saying I’m praying for you as always.

  19. Hi Heather, I was thinking of you and I came by to check on you. I hope you have a better week this week. I know you have many questions and concerns. Why? How Long? Whats Next? Me or no other person can answer that question, the best we can do is listen and be here and pray, please know that we love you and I would wish that sometime in the near future you will be well enough and you wil be able to continue with the idea of a book. I would love to see you stronger and at book signings, giving that encouragement to others that you have here on your blog. Who knows maybe Heather the next 5 years will see you as a guest on Oprah, Being interviewed and I could just hear her ask where your strength and courage came from. I believe God has a GREAT plan for you. Please just think about this.
    In our prayers….
    Sheila

  20. Heather,
    Only God has your days numbered…we know dr’s mean well but we also know that God is “BIGGER” than cancer. Remember the Lord took 39 stripes across his back to cover every disease- By his stipes we are healed. When my Michalea was born, she was given 4 % chance to survive…they we’re so negative , but I just had to trust the Lord. Today she is alive, yes we have faced trials -health issues, hospitalizations & (autism) but I know a God who is able…just live each day to the fullest with your family and just trust God with your life. Have a blessed week Heather!!!

  21. No wisdom, just wanted to let you know I am still standing in prayer for you, Heather.

  22. Beth had this on the LPM site a week or so ago– “So do not throw away your confidence, because it has great reward. For you need endurance in order to do God’s will and so receive what is promised.”
    Hebrews 10:35-36. I am memorizing it…and now? I am praying it also over you, dear friend!

    Keep those sites on your favorites and read them and be encouraged over and over until you feel that confidence rising.

    Fight dear One…do not throw away your confidence.

    The Smith’s are praying for you and your family.
    Love,
    holly

  23. I’m a silent reader, but always lifting a prayer as I check in on you. We serve a great God, and I can feel your faith. I just wanted you to know that I really enjoy your honesty, and I know God treasures your real faith. I’m praying He gives you all you need and all the time you need.

  24. Dear Heather,

    Once again I’m so deeply touched by your journals… I can’t imagine all the thoughts and emotions you deal with daily.

    I do know you are truly connected to the vine, and His grace sustains you for the journey you are now on.

    My mom was dx with cancer when I was a teenager, I was so afraid, and the statistics were grim. She beat them all.

    Now I have a son with brain cancer, and he’s beating his odds too.

    I’m so blessed every hair on our heads, (he remembers your Heather!) has been given account for.

    Praying for you daily,

    Susan

  25. Thank you for that beautiful post and for sharing your heart.

  26. Aloha Heather I am so happy to see you up and writing..I know what you mean about the children, especially about the bargain with the Lord about graduation..But I know the Lord has the final say and the final report. Here is a poem I wrote one day I call it. .Soul Cries.

    Trying to make sense of it
    Wanting to fight than quit
    Going from laughter to tears
    Going from courage to fear
    How did I end up here.

    I ask the questions why
    Needing an answer to justify
    Because I did not sign up for this
    And who put me on this list
    Is this real is this legit.

    Deep within my soul cries
    Stay strong or your spirit dies
    My mind tries to comprehend
    My heart just does not understand
    So what is the plan.

    Then hope arises from within
    With strong fluttering wings
    His spirit inside me starts to soar
    I feel his strength more and more.

    It’s okay the spirit says to me
    Life is full of questions you see.
    I know it’s hard to understand
    My perfect will for you and plans
    Your not alone but in my hands..

    I hear your soul cries.

    Copyright © 2007

  27. I hate that the prognosis numbers loom over you. I simply hate that for you. But, I’m soooooo thrilled that you found so many survivor stories. Our God sure did answer you quickly! 🙂

  28. You will live more than 5 years… I know you will…

    HUGS,
    liza

  29. Another survivor was told 6 months when he received his diagnosis of a GBM in 1996, Heather. His name is David M. Bailey and he is now putting out beautiful music of hope and inspiration (still!) and touring to spread that message. (you can hear snippets and download from iTunes if you want to hear a sample)…

    This is called Hey and tells a little of the story but inspires about that particular number you are struggling with and was a great comfort when we do battle with the number still on occasion (Keith has also surpassed numbers and we no longer listen or believe in them. We ALL only have today, after all…

    Hey – from David M. Bailey… (used with permission)

    Well he said I only had a year to live
    I said, “Maybe so, Maybe not.
    Could be that I only have tomorrow,
    And who are you to tell me what I’ve got?”

    Chorus
    I said “Hey, Hey, Hey, Hey, Hey!”
    Rpt.

    Well he said, “I’m a man who’s wise and learned.
    Everyday I get paid for my advice.”
    I said, “That’s fine but I’ll remind you
    I’m stronger than your laboratory mice.
    (Yes I am.”)

    Chorus

    He said, “Yes, but I can’t ignore my numbers.
    I’ve got a chart that spells it out in black and white.”
    I said, “Yes, but I see the world in color.
    It kinda puts it all in a different light.”

    Chorus

    “So please be careful with the words you use.
    There are those who will believe the things you say.
    But you and I know both you’re only guessing.
    The truth is that we only have today.”

    Chorus

    So there we were just staring at each other
    While the birds are outside playing in the sky.
    Well I’ve got no time to waste but I’ve got lots of time to spend
    And I think it’s time for me to say goodbye.

    So I turned and I headed for the door.
    Then I turned again with one more thing to say.
    “Well thank you for all the things you do now,
    But remember that you only have a day.”

    Chorus

  30. fly, brave Phoenix, fly

  31. Heather,

    Bookmark those pages and go back to them when your spirits lag. You have touched every mother’s heart with your post. As many others have said, only God knows the number of your days. God bless you richly and may your days be long!

  32. Carolynn from Western Australia. says:

    Heather,

    I know my situation is totally different to yours, but I am a great believer in positive thought, it will carry you a long way in whatever you do. I’ve also seen it work many a time in my Nursing Career with other people.

    My doctors have been totally gob-smacked at how long I’ve carried on and continued to work into the bargain, but I took the attitude that no-one tells me what to do. Especially when it came to telling me to give up my job, but there was no way know I was going to give up looking after all the tiny preterm babies that I look after and in turn there families. I absolutely love what I do, I also took up at as well, I’m not a great artist but I love having a go.

    Look at your Chemo Cycles as one Cycle closer to the last. My Cycles are “Forever” whatever that may mean, they are weekly with one drug and six weekly with another, it is the 6 weekly one that occasionally totally knockes my socks off but to still be here is totally worth it. Having just celebrated my 50th I will now aim for 60 years and hopefully so I will go on.

    Keep your chin up and keep smiling at everyone you pass. I now go out and about most places without a headscarf now and feel proud to do so. The reaction s somewhat amuse me now, especially from those young ones.

    Thinking of you all the time and checking on you several times a day.

    Take Care
    Lots of Love Carolynn xx 🙂

  33. KimberlyDi says:

    My mother died when I was 36. It was too soon. It will always be too soon.

  34. Oh, I’m so glad you found those stories!

  35. (((((((((((((((((((Heather))))))))))))))))))))) I do not comment very often, but I do read and I do pray.
    I want to tell you that you are a testimony of God grace. The other day I was talking to my pastor and I was telling him about you and how you always point people to the Lord. You are inspiring and I know this is a very hard time for you but you willingly share it with those you don’t even know. You are a true blessing and I will continue to pray for you and yours daily.

  36. only God has our timetable written and planned. i can’t imagine what you are feeling but please know my prayers are with you daily.

  37. Casey Phelps says:

    Heather,
    I cannot begin to imagine having a countodown of our lives. You and your family have overcome so many odds. Don’t let the doctors numbers get you down. If I have learned one thing in the past week it is that doctors do not have the final say on our lives. Smile!

  38. Heather,

    I’m not a mother with cancer, but I am a mother who’s husband has stage 4 colon cancer and liver cancer and our son Ethan is 15 months old. When we were told Christopher had stage 4 and it had spread to the liver and was covering 50% of it. I felt as if the doctors were telling me that Christopher was going to die in a week. Every time I looked into their eye that’s what I felt they were trying to tell me. Every night I would go home and try to read about the type of cancer he has and see what his “numbers” would be. Everything I read was 12-15 months. My first thought was, Christopher will get to see Ethan turn one and that’s it (Ethan was 11 months old at the time) – and that’s not right. Christopher is great dad and couldn’t wait to be be a dad – why would our Lord do this to him now. And one night while up in the hospital Christopher turned to me and told me that he was going to be ok and not to worry about him. He told me how his aunt had stage 4 breast cancer and gave her a year – that was ten years ago.

    Forget what the doctors say – it’s your life and your family needs you right now as much as you need them. You’re life is yours and numbers don’t mean squat.

  39. Oh Heather. This is my biggest fear also. We just got a 3-5 year diagnosis for my mom — different, she’s got Alzheimer’s and won’t recognize us in 3-5 years. How sad. BUT, we know that God doesn’t make any mistakes and we also know that even if we can’t figure out His plans, He does have plans and His plans are perfect. So I trust in that. You (or my mom) have no less days to live now than you did before you were born!!! All of our days are numbered, and have been before our days came to be (Psalm 139). Your death and mine (and everyone else’s) is planned already — and that’s a comfort. The Lord is using your life mightily and He will also use your family’s testimonies — and your children’s. It will be difficult for sure. And it has been already. But diagnosis or not, your times are in His hands — and that is a huge comfort! ((( hugs ))) Good to ‘see’ you back again — I’ve missed your posts.

  40. Just thinking of you and praying for you. A man in my church choir was given 6 months to live with his brain cancer and is now going on 5 years.

  41. Oh Heather! You are so strong! May God give you extra blessings and reasons to smile throughout your day. It was so good to see you back on your blog. Day after day I would check, waiting…and praying that you were enjoying time with your family and that you would be back to blogging soon. You are such a great witness to others.

  42. Hi Heather,
    Thank you so much for your honesty in heart and words. I too heard the
    3-5 diagnosis # and after being really bummed about it, I asked the Lord if it would be okay if I took the (-) out of it and stretched it to 35 years. That was 11 years ago, so according to my calculations I still have 24 more to go.
    Of course this is not totally practical, but it got my mind off of the numbers and back on Him. He does have our days numbered and nothing will change that. Praying for your next round that you are dreading to be gentle on your body, making the going through it smoother for you. God is so good all the time and He has you in his hand and heart Heather. Give your worries to Him and let Him give you rest and restoration for your heart. You are so loved by so many. May you feel His gladness and His joy all over you this week.

    Laurie in Ca.

  43. Heather, you are the MOST honest person on all the Blogs. You tell it like you feel it. That takes courage. With your courageous personality, you WILL beat this 3-5 yr. thing and be here to rock your great-grandchildren.

    Love and Prayers,
    God Bless you Richly,

    Betty (Oklahoma)

  44. Haven’t had a diagnosis myself but have lost a mom when I was 5 to cancer.I pray that I never die when mychildren are young because it was hard to grow up without a mother,but for a strange reason that was part of God’s plan for my life!I do keep you in prayer that you live for a long time.I can tell you I wept for a few days when Amy Whilhoite passed away-yes it was sad but i was also angry that God didn’t answer my prayer the way I wanted it to be–see her out of the hospital and in remission forever.

    I am glad that you are in a support group that the people you talk to have been there and done that-more understanding of what you are going through.Hang in there .Just for the record at times I wish deep down doctrs would never give a time line of how long has to live-many go way before it or even long after.Doctors aren’t God.One thing I can asay is people are living longer and better lives with cancer then before-my died of malignment melanoma -almost 45 years ago and now most people recover from it.

  45. I really believe Heather that prognosis is just an educated guess. My brother-in-law was diagnosed with brain cancer as well and was given 6 months to live. He beat those odds and lived for 11 more years. It is my hope for you that with all the prayers and love and support that you too will beat those odds and I will be reading your incredibly inspiring blog for many, many more years to come. Always thinking of you and will continue to send you healing thoughts.

  46. Heather,
    Those of us who have young children/homeschool/etc. do chemo just the way you do…one day at at time, fully reliant on His grace that is sufficient.

    I’m glad you were encouraged.

  47. Heather, I cannot even begin to imagine how you get through each day with that fear in your mind. Your daily witness to others through this blog shows that God has a purpose for your life and hopefully you will live for many years so that you can be the example others hold up to show that people can survive this horrible disease!

    Now for a favor, if I may be so bold. My friend, Kim, is a full-time law student raising a teenager and battling breast cancer. She’s been nominated for a $10,000 scholarship for blogging on her battle with cancer while in law school. I was hoping you might consider a post asking others to vote for her. She’s up against 19 other blogs, mostly full-time undergrad students. Obviously, as you know from the money many of us pitched in to help you early on, the money from this scholarship would be a huge help to Kim and her family. Her blog is at: http://blawgcoop.com/lawmom and the voting link is at: http://www.collegescholarships.org/blog/2007/10/08/vote-for-the-winner-of-the-2007-blogging-scholarship/

    Thanks!
    PT-LawMom

  48. Praying for you. Those numbers the Dr. gave you initially are only numbers. The Lord is the one that numbers are days, not the Dr. PTL!