MDS>AML New Blog

[Arkrum]

Hi, I have posted a couple of times on this forum but mainly used it as the fabulous resource it is. After being diagnosed with MDS Dec/09 I was transfused bi-weekly to Apr/10. At that point I got a positive response from Vidaza in 5 weeks followed by a 4 month transfusion holiday. I was booked in for SCT in Aug, but my counts started slipping as I progressed to AML by late Aug. Now I'm in Princess Margaret in Toronto, just finished my 3-in-7 induction chemo and feel strangely upbeat and energized after that somewhat rough week. So, feeling need of catharsis I started a blog (what do literary-minded cancer patients do?) which seems to be consuming considerable chunks of my day. I hope some of you might enjoy it. The link is http://hcrengager.wordpress.com/

Thanks and best of luck to everyone here,
Mark

[Neil Cuadra]

Mark,

Your blog is less than a week old but it's already good reading. I like your upbeat attitude.

Maybe musicians are naturally "upbeat" (pardon the pun).

[Arkrum]

Thanks Neil, I've read a lot of your comments over the past 9 mo. You've really selflessly given tons of great information, especially to the so many who are desperately trying to come to grips with the huge left-turn in their or their family members lives that is the impact of MDS/leukemia. I very much appreciate you taking the time to read my blog and make such positive comments.

Best regards,
Mark

[rose mcmillin]

Hi, Hope you keep up your blog. I loved it. Witty and smart and a really good read. What a great combination. This disease is such a monster that it was refreshing to read. Also, It answered alot of questions that I had but in a less clinical way. Thanks so much, Rose

[Arkrum]

You're welcome Rose. I feel it has been healing for me to write. And if others, especially those similarly afflicted as myself can take away a positive from it, mission accomplished.

Mark
www.hcrengager.wordpress.com

[Arkrum]

Hi all, just quick update to let any interested parties on Marrowforums that my 1st 34 day cycle has ended. I am happy to be here to talk about it. I do go into relevant detail about the experience, but confess I get sidetracked with stories on the the triumph of the human spirit. And I'm committed to have fun doing it.

See my blog at hcrengager.word press.com

BTW if there are any issues or contraventions with me posting in this way, just let me know and I'll cease immediately. I'll feel strong and positive as I move down this path and my motivation is strictly to reinforce the convictions of others similarly affected.

Thanks,
Mark

[tytd]

Hi Mark,
Your blog is doing exactly what you said, helping motivate others in the same boat or following behind you on your climb. I, for one, have enjoyed reading your blog and wish you the best. You are a very lucky man to have so many supportive friends and family. tytd

[Arkrum]

Hi tytd,
I really appreciate your feedback. You are exactly right, I am extremely fortunate to have the support I do. I only hope that those with minimal support (and I have seen that big time with others similarly afflicted with marrow failure in the past 11 mo) are able to take some positives away from what I write. I wish to be as inclusive of the reader as possible. We all have at some time had to rise to the challenge and with a lot of effort and a little luck have been able to succeed. I don't see the reason in approaching a health issue like leukemia any differently. Take each day as it comes, trust your instincts and give it your best shot. We really have no other choice.

Thanks again,
Mark

[tytd]

I was very saddened to read that Mark had lost his battle with AML last month. His blog was an inspiration and his spirit shown through. He obviously was loved by many and our condolences go out to them.

Take each day as it comes, trust your instincts and give it your best shot

Thanks for sharing your story Mark. tytd

[cathybee1]

I'm so sad he's gone.

[Neil Cuadra]

Mark died December 31 at age 60. We are very disappointed to lose such a spirited friend after riding some of the ups and downs with him. We feel especially bad for Mark's family, who stood by him so closely.

From his wife Heather:

Mark left surrounded by love and care, from family members, the staff at PMH and his wonderful friends who fueled his energy to the end. May his life be an inspiration to all who have known him to go a little further, to listen a little harder and to care a little more as he would have.

[IRootForMapleLeafs]

I am sad to read this, too, even though I did not know Mark. As a fellow Canadian, it makes me sad to but I can tell he was a very special guy.

[bebop]

very sad to read indeed. it seems we have lost a few in recent months. very sad.