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July 11, 2011

Bad News on Thursday

Filed under: — brendan @ 20:35 IST

It’s taken this long to be able to share this.

We learned last week that the doctors believe my leukemia is too aggressive for successful treatment. Any further chemos would do more damage to the good bone marrow cells, and still not stop the bad ones. My diagnosis grew by a couple of words: Primary Refractory Acute Myeloid Leukemia.

On Wednesday they saw my white cell count jump from 0.4 to 1.0 in a day, which is not the normal rate of growth—it should go up by tenths, over a few days. The haemotologist said he wasn’t going to make any judgements until they see the numbers from the next day’s blood sample. On Thursday morning, the liaison nurse came to tell me they saw them move from 1.0 to 1.9—in one day. The consultant doctor was going to look at the blood sample under a microscope to examine it more closely, and then he wanted to meet with Elana and me in a couple of hours.

That’s when we learned the third round of chemo, some sort of industrial-strength version, hadn’t wiped out the leukemia cells and that they were there in full force, despite the power of the treatment.

I’m not eligible for stem cell transplant unless they could have gotten my current leukemia into remission (less than 5 percent of blast cells in the bone marrow). But that hasn’t happened, and they believe they cannot get it there.

I was discharged from the hospital today, and prescribed hydroxyurea, a tablet form of chemo which is intended to slow down the generation of the immature white cells, and hopefully at least reduce them a little bit. I’m going in next on this coming Thursday, where they’ll take a blood sample and in particular make sure my platelets are okay, since that medicine’s major side-effect is reduction of platelets.

The doctor said if I’m able to stay healthy and avoid infection, we’ve got a window of up to six months—if we’re lucky. Right now, I feel fine, and will be trying to do what I enjoy and be with those I love as much as we can make possible.

I’m so sorry this is the way so many of you are learning about this, but it’s as close as I’ve been able to come to actually saying the words, particularly with any frequency or involving more than one or two people. Or even acknowledging what’s happening. Part of it is still very surreal, though I’m making progress on that.

Don’t stop your positive vibes, prayers, karma, lamb sacrifice, and ritualistic bonfires. I am still happy to accept any and all donations.

B

 

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59 Comments »

  1. I don’t want to say how I feel, because I want to stay positive for you! I love you man, and wish you all the best! I know this is a tough time, but stay positive and enjoy it all! As stated previously, Carpe Diem! 🙂

    Comment by Rambo — July 13, 2011 @ 16:00 IST

  2. I am totally lost for words. You have shown such courage over the last couple of months that I feel humbled.

    Comment by HelenMc — July 13, 2011 @ 17:20 IST

  3. am way late to the game. And am sitting here in my little office space ready your writings… B am keeping you in my prayers, I’m sending LOVE your way, and asking the God I believe in to be with you EVERY step of the way. E – I love you my dear and have ALWAYS known you had an uncommon strength. You are both.. strike that .. your whole family is being uplifted by SO many around the world. We will pray, meditate, hum … whatever it takes.

    Comment by Michaela — July 13, 2011 @ 19:22 IST

  4. Stumbled here, stayed to read, writing to send love and best wishes – feels futile, but unless you say different, that’s the most I can think of to do.
    Hugs xxxx

    Comment by Cookknitwine — July 13, 2011 @ 21:02 IST

  5. Stay and fight! Visualize those white cells going away- smash them. find joy in everything you do– and the power of love from your friends and family. Don’t give up— you’ve fought the fight before and won– you can do it again. you’re in my prayers, and thoughts… i’ll sacrifice my boss for you— anything and anyone…
    with lots of love
    diana

    Comment by diana barnes — July 13, 2011 @ 22:57 IST

  6. Hello Special, Not only are you Special, you are a hero. Loie & Terry have kept Roger and me in touch with this turn of events in your life, Elana’s and the children. Your last post was indeed nothing short of heroic, your clarity and honesty touch me as much as your wonderful spirit. I guess I’m writing just to tell you you are loved far and wide. Islesboro is lucky to have you. TLC bring our love when they visit soon. Best wishes to all, Marny & Roger

    Comment by marny Heinen — July 14, 2011 @ 02:16 IST

  7. Brandon – I wanted to know that you are in my prayers. I have been following your blog for several months and was saddened to hear of the latest developements. Keep fighting – I’ll continue to pray for your health.

    Comment by Tim McCarthy — July 14, 2011 @ 07:22 IST

  8. B and E and boys, hugs to you all! Sending you all of my positive energy for you guys! Stay strong and as others have said, Fuck Cancer!

    Comment by Heidi — July 15, 2011 @ 01:05 IST

  9. Brendan,

    I’ve been following your blog for a while. I’m so sorry to hear your news. My thoughts are with you, Elana (feel like I know her!) and your boys.

    I know you have been robbed of quantity, I hope you can embrace quality. Make a memory box for Elana and the boys, write letters to them all, take a thousand photos, make everyone a scarf 🙂

    I know you must be so angry at the moment, try not to let it consume you and try to live what you have left. Don’t be afraid to seek help to get what you can out your life. Just smile, laugh, love and cry together.

    Thank you for your honesty. One part of your legacy is I understand the experience of people with cancer better and, hopefully, I will be better able to care for them. Thank you.

    Ciara

    Comment by Ciara — July 15, 2011 @ 13:40 IST

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