Thursday, January 21, 2010

Today's Thoughts

If you've posted here, you know that I moderate them. I did this at first because of the ads that were being posted (usually for viagra or an adult site) but sometimes the notes are really strange and I reject those. There were a couple recently of note. One person said that this site helped with a school project. Another said that the recent posts were more interesting than the older ones. Huh? I've also had a few requests to post links to noteworthy causes (Haiti relief, healthcare information sites) and I've declined, not because they aren't worthwhile but because that isn't the purpose of this site. Anyways, don't let that discourage you from posting or writing to me. I like hearing from you even if I don't always respond right away. I'm getting better...able to talk on the phone most of the time now without crying the whole time. No promises on the crying part.

Adrienne's death was the most painful thing we've ever experienced and continue to experience. One dad at Compassionate Friends said he already had the worst day of his life and it's so true. Still, I'm thankful for the time we had together, a lot longer than most doctors thought we would. We never lost hope and she lived as full a life as anyone could under the circumstances. I still think back happily on so many things...trips, graduation, dinners out, even TV. A new season of Project Runway just started and it would have made her so happy to watch it. Every time I watch one of our programs, I think about how excited she would be. Oh, and she would have loved Rudy, telling him a thousand times a day how pretty he is, just like she did with Moe (and Prince and Caesar before them).

Sometimes, I feel so hopeless when it comes to refractory Hodgkin's. For most people, a Hodgkin's diagnosis is a few months out of their lives and then things go back to normal, but for refractory folks, it's a constant nightmare. Kelly Urban, whom I met last year when she was in Las Vegas, passed away last week (http://www.caringbridge.org/visit/kellyurban) and Bekah is going through a very rough time right now. I have hope that they'll come up with something soon, but in the meantime, it's tough, really tough.

14 comments:

Chris said...

I don't know what to say Alison except I think about you guys often and my heart still breaks too.

If you hear anything about Bekah, could you please let me know? I just talked to her the day before she went to the hospital and she didn't mention anything (or made it seem like the worst was behind her from the SAHA).

This whole thing sucks...

Chris

The Reeds said...

Alison,
I'm sorry about the odd comments.
We still think of you and Adrienne often. I was telling Mike that I've grieved so much for people I've never met in person. You become family when you get the diagnosis, especially when it becomes refractory.
Love and prayers,
April

JoAnn said...

I have been reading this blog from the beginning but I never posted until I recently started posting on Bekah's blog (another one I have been reading from the beginning). I felt punched in the stomach when Adrienne died because of the way she lived her life and the inspiration she was (and is) in that she did her life no matter what.

I am so sorry for you loss. Although I know the pain of loss, I can't imagine the pain you are going through. I lost a friend from Hodgkins and one from Lymphoma. Adrienne reminds me of one of those friends--a good friend-- whose disease also became refractory. My grief for someone I never knew but who had such an impact, awakened the grief I felt for my friends.

Deb Blake said...

Hi Alison,
I always keep up on your blogs.
I am here for you. See you soon.
love, Deb xoxoxo

j said...

no words...
just lovin hugs
j

Loraine Ritchey said...

I read this for the first time today . I linked through Chris alt delete blog.I am following his story since we ( my daughter and I ) were searching for answers for what was happening to my own son Chris and the HL.nobody ever mentioned "refactory" just let us think this was the curable cancer...My son died on Dec 3rd supposedly from H1N1 ( they even said it was a mild case .yeah well they have said a lot of things.....actually it was from the blood clots from the pic line .......I just wanted to say I am so sorry because I do know the pain .. and in our case it seems to get worse not lessen.. Loraine Ritchey

Kate said...

Hi Alison,

I know what you mean about getting the random viagra comments on your blog- I get them too!
I'm glad that you still update us on your lives and the small joys like your puppies that help to distract you from your loss.
I'm also extremely grateful for the reminder you give me about how adrienne lived her life to the utmost even as cancer was trying to take away her light.
I'll never understand why I was "one of the lucky ones" who hasn't had a relapse on HL...but even if I can't wrap my mind around it, I can see stories like yours and remember how blessed I am. I feel like I have a responsibility to do good and live well because so many like adrienne do not have that chance. It's not fair.

Kate

Anonymous said...

You did not just lose a daughter....you lost your best girlfriend. I am so very sorry for that. I wish she was still here.

A Mom

Unknown said...

I hope you continue to get positive feelings from keeping this blog, even with the occasional weird comments. It has certainly meant a lot to those of us who only know you on-line, but obviously you have to be protective of your own comfort.

Take care, Alison.

Karen, Clare's mom

Veronica said...

Right before I clicked onto your blog, A, W & I were having a conversation about a comment left on his blog - he says 'robots' leave messages.......pre-programmed search things which try to gain information for selling email addresses........means nothing to me, but probably does to you! Just thought that was a bit weird, too, having that conversation right before clicking on here for the first time in too long!
You know we're thinking of you daily - and you know how much we hate this stupid, destructive disease - sending all our love......V & W.........<3

Sharon said...

I am Kelly Urbans sister. She died on Jan 15th and my heart is aching. I can't believe I will never see her or talk to her again. She was a fighter till the end,and I will miss her forever. My heart is aching also for her 11 year and 14 year olds. They were so brave at her funeral and I pray for them. Kelly was a wonderful mother and a great sister and friend. I am so sorry for your loss, I will pray for you also, and will be visiting your site for support.

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