Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Wednesday, June 22, 2011

My New Health Gauge

I'm writing this morning, because I need to stay awake. I have plans this am, a coffee date. X dragged me out of bed at 7, like he has for almost every other summer morning of his entire life, and I'm going with it.

X got his very first summer mohawk yesterday.

I know. I know, but it's not your typical high flying, pointy, all the way down the back hairstyle. 

He said he wanted it. We went online to look at pictures to see if it was even a possibility and the first decent picture we stumbled on was David Beckham. Damn, did he look fine. So I decided could have that one. I called it his soccer style, but X wouldn't give up a pic to show you. Not yet, anyway.

I'm working on a schedule that allows me to rest while still enjoying just X during the summer and family time. So far, I've been able to have x half days with mom-in-law taking the other half. The hope is that after her time, J and I can pick him up and we can all play together, but sometimes I still need rest. It will take time to get my stamina back. Next week summer school starts, so he'll be gone in the mornings. I'll have to adjust to resting then.

I did manage to coach last night. Yes, we're at it again, coaching summer soccer. I actually got off the chair onto the field, and told 16 2nd and 3rd graders what to do and where to go, for almost 30 minutes. That's half the practice!

This could be my new health gauge, the coaching ability health monitoring system. If I can't get out of my seat, if I can't even go, uh-oh, but if I continue to get up and do my thing, lasting more than a half an hour, I'm improving. I'll keep you updated.

I saw Dr. G yesterday, and we agreed to a "treatment holiday." I'll have a PET scan in late July or early August to check my status, hopefully just to reassure that I made it to significant remission, other refractory Hodger's have with Bendamusteine. Cross our fingers and pray, maybe it could last until August, or 6 months, 9 months, a year! 

This appointment came just in time, because I got an email from The SAMfund! It's grant time. For any of you survivors out there, or cancer patients who are not currently in active treatment, between the ages of 17-35,  The SAMFund gives out grants for a range of things from medical expenses to graduate tuition to rent. Previously they've given out over $100,000.

The hitch, you can't be in active treatment, and luckily, I haven't been since my last chemo. I just confirmed it yesterday.

If you meet the criteria, google The SAM Fund for more information. The deadline for submitting Part I is Wednesday, July 6th at 5pm EST.  

I'm hoping this avenue of funding my medication works. I hate asking, and the asking factor hasn't gone so well since everyone seems to be in need. I need to find something, that's for sure. Refinance the house is top on the list. 

1 comment:

Anonymous said...

Hi! This comment actually isn't related to this post, but I wanted to leave a little snippet of possibly useful information. I read your blog often and thought of you this morning during a conversation with a family member who has Lupus. She has chronic, constant pain and has been helped tremendously by a recent procedure which implanted a 'pain pump.' It sounds like it pumps morphine into her at a constant rate and it has really helped her quality of life. You probably know about this already but I just thought it might help. :)