I have Leukemia

Posted on Jun 21, 2013 | 45 comments

True.

I found out on Friday. I had no idea. I thought I was a bit run down. Possibilities: thyroid problems, early menopause, plain exhaustion. I have a daughter with severe disabilities in case you hadn’t heard.

I could try to describe my thoughts but it would be a mesh of absolute panic and total denial with a bit of delirium thrown in. On Monday, while I got my bone marrow biopsy (all you need to know is: long needle into bone) I visualized that scene in Total Recall where Arnold Schwarzenegger pulled that metal sensor out of his nose. He screamed. I sang Igglepiggle’s theme song. That makes me officially stronger than the Terminator.

Like I said panic + denial + delirium.

Anyway, thought you should know.

I start chemo today and I can’t wait.

45 Comments

  1. Stacie…

    from oceans away, worlds apart, lives that barely touch… I reach through the net and hold your hand and say “I care so much. Let me know how I can help…” True. If you can think of anything… let us all know. We support you.

    Sending love,
    tee

    • Thank you, Tee!

  2. I was shocked to read this. I am so sorry this is happening to you and I hope all goes well with your treatment. Thank God for the NHS.

    • Ditto your NHS comment. I’m getting amazing and very fast treatment so far.

  3. Mama Lewis

    I’ve followed your blog for a couple of years now and I have great admiration for how you so capably and strongly deal with everything in your path. I’m gutted to hear about your health situation but I know you can use your strength to get through this. Sending you love and very best wishes for recovery.
    Yla, mama lewis blog fan x

    • Thank you very much!

  4. So shocked to hear this dreadful news. We are thinking of you and praying for you and your family. From Penny and family in New Zealand, including a 5 year old boy with CP who loves looking at photos of May x

    • Of course, your son is in love with my daughter! Thank you for the good wishes!

  5. Hugs & Prayers, Stacie!

    Adrianne

  6. Thoughts, prayers and wishes for health and strength through this unexpected journey.

  7. Tons of positive thoughts and wishes for strength coming your way. Kick leukemia’s a$$

  8. Stacie, I am absolutely astounded and gutted to read this dreadful news. Sending you all the love and strength I can muster – hope it can reach you through the Internet, even though I don’t know you in real life. will be thinking of you, your husband and of May and Ieuan during this very difficult time. love, Alexa xxxx

  9. Dad & I wish you well! We wish for you the easiest time you can possibly have and an amazing recovery!We love you very much, and are always proud of you in everything you do, so this should be no exception! Lots of hugs to our special daughter! Love, Ellen & Dad

  10. I stumbled on your blog at Babycentre and love to hear updates about your children and the amazing way you deal with your challenges. I was hoping everything was okay with May as you hadn’t posted in a few days, but now I see why. I’m sorry to hear your news and hope you know there are many of us out here you’ve never met, who usually just read and never comment, who are wishing you the strength and courage to get through this next challenge.

    • Thank you, Kerry! Yes, I figured people would be wondering what was up. And, I need support so I really appreciate you sending it my way!

  11. Stacie,
    This can’t be true,we are all gutted and completely knocked of our feet.But we are sure that if any one can fight and overcome this it will be you!
    Wishing you a speedy recovery and thinking of you all the time.
    Love from us all as well as to Gareth,May and Ieuan and the best of luck girl.
    Marcel and the Jenkins family

  12. Speedy remission to you. Holding you in the light. Shocking news but with all the advances you will soon be leukemia free. Glad you are getting prompt service and health care. I know what an advocate you are for May and now for yourself with loving support from family and friends.

  13. Stacie I can only echo what the previous comments say…I’ve been reading your blog since May was little and I’ve always been so impressed with your strength and courage. Even though I don’t know you, you have impacted on my life in such a positive way. I’m sending you healing and positive thoughts, you and your family will be very much on my mind, love Rosie

  14. Fucking hell. (Swearwords definitely appropriate). Never mind teaching, anyone with the guts to be funny under these circumstances should run some kind of ethical black ops thingy – think Indiana Jones crossed with Amelia Earhart and you’re almost there. I am in awe.

  15. I am so sorry to hear this Stacie but you know what…..? YOU WILL BE FINE. No one is as strong as you, not even the Terminator.

  16. I just couldn’t believe it when I read your post.I have been looking every day for news about May and realise now you have been served a double whammy.I have been following your blog for a long time and you are an amazing person.I have such admiration for you.treatments for leukaemia have come a long way and are so good.Stay strong and remember there are loads of us out here sending you positive vibes and virtual hugs.I shall be thinking about you.

  17. Oh, I’m so sorry to hear about this! All my love for you. (add me to the list of Americans super glad you’re covered by NHS btw. I’ve had family & friends faced with maybe or certain cancer and one of their first concerns then had to be how to pay for it… even if they had insurance. So, so glad that’s not something you have to worry about.)

  18. I am stunned. I have no words to express how sad I am to hear of this! I have been reading your blog what seems like forever and feel like you are a favorite cousin. Sending you and your family lots of positive thoughts, prayer, and hugs. I would normally say stay strong but I know you are a lion at heart.

  19. Hi Stacie
    Really shocked and upset to read you news. I’ve only recently started following your blog and its been such a great source of information for me about babies with brain injuries and is helping me to help my 17 month old with cp. as others have said you are such a strong person you will find the reserves to get through this. Hope May’s post op recovery is still going well and she’ll be back bouncing soon better than ever. Best wishes Gina x

  20. Devastating news. It’s impossible to say anything that can take away your fear I know. 18 months ago I had a huge op to remove a tumour which was of an unknown type until removed. It turned out not to be cancer although locally invasive and the size of a grapefruit. My son with CP was 3 and my youngest only 13 months. I know how distraught and devasted I was. How scared about the future and how terrified for my children. I still find it all very hard to talk about. I hope you have lots of support and love to help you through this, if you ever want to talk and think I can offer a listening ear, I’m here.

  21. Oh my. All the best, healing thoughts out there to you and your family. And know that others are thinking for you, “Seriously? WTF? Not fair.”

  22. I saw these updates in my twitter timeline and couldn’t believe it. I came to your blog and saw this update. My first reaction was shock and sadness, but I know you will come out of this! This will pass.. My best wishes for a speedy recovery.. you go beat it, girl!

  23. I’m so very sorry to hear of this turn of events. :( But as others have said, they’ve made huge stirdes in treating cancer, including making it easier than ever for living donors to donate bone marrow. You’ll be kicking cancer’s ass in no time!

    The tiny silver lining: all that time strapped to an IV pole can be very useful for some therapeutic coloring. ;) Not that that’s what I do during the infusions of my immune suppressants… lol. (But seriously, there are some awesome adult coloring books out there these days, including some really neat mandala ones.) Other fun things to do while strapped to an IV pole: watch movies on your ipad/tablet/laptop, read/listen to a book, play mindless games (if you’re a solitare/logic puzzle person, I recommend Set), knit/crochet/cross stitch (patterns have become majorly awesome- it’s not your grandmother’s crafting anymore!), etc. I personally prefer having the IV put in my forearm, as it gives you much better range of motion, and no pain when moving the hand or arm.

    Don’t forget, the IV will make you cold! The saline is room temp to cool normally, which lowers your body temp significantly. Dress in layers, lots of them. Shawls are especially nice, as you can throw them on and off easily without messing with the IV. So are fingerless gloves, since your hands will likely freeze, too.

    If the meds make you nauseous, there are a lot of anti-emetic (anti-nausea med) options out there. I’ve personally used them in injection, IV, topical, pill, dissolving tablet, and suppository form. I find the suppositories work fastest (yes, faster than IV!) but they can knock you out cold very quickly, too. The dissolving Zofran gives me the best combo of fast acting/not loopy, which is very imnportant when caring for the kiddos.

    I highly recommend reading Spoon Theory. Just google it, it’ll pop right up. It’s an essay by a young girl with lupus on what it’s like to live with a chronic illness. I know cancer’s a bit different, but the basics are the same- you’re run down, have less energy, things are harder to do, all that fun stuff. It’s amazing how the simple story helps you understand your own body better. I also recommend passing it on to family and friends. Which brings me to my next point- DON’T HESITIATE TO ASK FOR HELP! You may be an amazing Super Mom, but that doesn’t mean kyrptonite is your only weakness. Take the time and energy to take care of yourself, and you’ll have the time and energy in the future to keep being there for May. I’m sure your family and friends would be very happy to come over and help out. I know a big tradition here in The South (that’s ‘Merica, for ya) is to cook for a family in a situation like this. If people can’t help in any other way, ask them to prepare a meal, especially one that can be frozen for your family. Then when you feel like garbage and don’t want to cook, you can defrost and go. Also, don’t hesitate to ask for helping with cleaning and errand running. That will leave what energy you have left for caring for May. You also might qualify for in home nursing assistance to help out with May’s care with you being sick. Don’t hesitate to ask.

    I’ll be keeping all of you in my thoughts. If you have any questions about the joys of being sick as an adult, don’t hesitate to ask. I’m well versed in Patient 101 (and 201, and 301, and 401…) and if I don’t know the answer, someone in my amazing support group probably does.

  24. Ugh. Been there, done that, burned the tshirt! I know how scary it is in the beginning but you’ve got awesome medical care and you’ll beat it. You’re one of the toughest Mamas I know and those stupid blood cells that are misbehaving will rue the day they tried to mess with you! Lots of love coming from another Mama who has been there. <3

  25. Yeah, like you have time for THIS! Ugh. I am so very sorry that you have to deal with this. I can’t imagine. There are no words other than you have dealt with worse in such an amazing way. I wish you the very best and have confidence that you will pull from the well of optimism to deal with this challenge. You are a rock star and amaze me all the time. You can do this. Love, Amy

  26. Thinking of you all the time Stacie, and sending you my hippy-dippy Reikhi vibes (cuz I’m mad). Text, call, email – anytime x

  27. I’m so sorry to hear this. I’ve been reading your blog for ages and don’t always get a chance to comment, but wanted to offer some words of support in this case… Wishing you all kinds of strength, and for the leukemia to be kicked squarely in the face by the treatment.

  28. Oh Stacie, I am so sorry to hear this. I have followed you and May for a long time and I have so much respect for you. I am gutted to hear this, how completely unfair. I wish you a quick remission and I hope that May is continuing to do well in her recovery as well.

  29. Stacie,
    I am an avid reader of your blog but have never commented on anything (been a ‘lurker’) and my heart has just broken for you and your family. Vibes and hope to you,
    Bella

  30. Stacie, I have been reading your blog for some time. I am so sorry to hear of your leukemia diagnosis…last thing you needed, right? I work with special ed kids like May in the southeast United States and have enjoyed hearing of May’s progress. I wish all my student’s parents were as involved and caring as you! Sending prayers and good wishes your way in hopes of a quick remission. Like everyone else, I wish there was something I could do to help….

  31. My stomach dropped when I saw this. How crappy and unfair. I have a friend in the hospital right now, diagnosed with AML just over a week ago out of the blue after what seemed to be a really bad migraine. She just finished her first round of chemo, waiting to see if it sent her into remission… You will be in my thoughts and prayers.

  32. All my family wishes you the best of love and luck for the coming weeks. It is going to be a tough road but if anyone has shown the necessary strength for this, you have.

  33. Been following your blog for a while now from West Yorkshire, and you are absolutely, definitely stronger than the terminator. Sending love and prayers your way. Xxx

  34. Stacie you are amazing, beyond that even. If anyone can knock this horrible situation away it is you. I admire you so much. Keep your strength up and keep being the amazing person you are. Xxxxxxx Sarah I Xxxxx

  35. I just want to reach out across the ocean and give you a hug. I know that you are a super strong person and you will be beat this. You and your family are in my thoughts.

  36. Officially stronger than the Terminator. True. Lots of love and best wishes to you.

  37. I too have followed your blog for awhile but have never commented before. This post rocked me. I. cannot. believe. how unfair the world is. Sending thoughts of strength, healing and love to you and your family from far across the world (Zambia). Would you ever have guessed you have fans and support all the way in Zambia!?! Stay fierce. We’ll all be fighting for you in our thoughts.

  38. I wish I could find this leukeamia and punch it in the face! sending lots of love, hope and virtual punches your way. you are one of the most inspiring women I ‘know’. stay strong girl!

    • Like the visual gozogirl!

  39. Oh Shit Stacie. That’s so unfair. I already know you are super strong, but I am sending you more strength from the other side of the world. xx

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