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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Saturday, March 26, 2011

I couldn't remember the last time I'd written.
I left the blog frustrated, ready to throw my computer, after I tried to finish an already added page for my jewelry and destroyed my existing template I was so happy with.
I have a tendency to believe I have the capacity to do things I can't.
I have delusions of grandeur.
I don't think I would have gotten this far without them.
Either way, my playlist is deleted from the intro and I can't get it to re-paste permanently, not even in the sidebar.
And now, for some reason, the template looks blank.
It's a horrible, terrible, no good very bad day.
I'm moving to Australia.

Luckily, I am still alive and that's what I've gotten online to report.
My check up Thurs. didn't yield the best results.
My creatine, an indicator of kidney function, didn't decrease, which would have showed improvement.
Well, it did, from 1.6 to 1.5.
My goal was for a  0.6.
I've increased that to 0.8.
My providers were hoping for a 1, but I think they've increased that in their heads.
Apparently, the nephrostomy tube and bag are what is allowing my kidneys to rest and improve. One those are removed, my kidney function will probably not improve anymore.
I desperately need my kidneys to function at their greatest capacity.

Please, everybody, stop for a moment, close your eyes and focus. Ask for my kidney function to return, for my blood levels to normalize, and for my creatinine to return to 0.6 by Mon.
I've been trying to drink 3 liters daily. I've gotten at least 2 into my system daily.
If I drink only coconut water I begin to fear overdosing on potassium, so I have drinking options.

I did think my kidneys would be the next organ that tried to fail on me. I thought it could be prevented. I'm trying to help myself in anyway possible. I need them to continue to filter my medications.

I also suffered what could have been Tumor Lysis Syndrome, but more on that later.

X got sick with a virus Thurs. and was out of school both Thurs. and Fri, exhausting me.
This is the pattern after I suffer a severe setback, the following week he'll get legitimately sick, and I'll have to care for him.
I used to call these days "super-mothering." He needed to get over a virus, but he also needed reassurance that he was still the child, that I could still care for him.

I do, but this time it just about killed me. I've  been recovering, lots of sleep.
Thanks for your love and thoughts.  

4 comments:

MOTILAC said...

Hillary,

I've watched this blog ever since you started it here...as I followed the original "baldie's blog".
It however is my first time leaving a note.

My thoughts and prayers are with you. Stay Strong. Stay spirited. I think you are incredible.

Thomas

Lysa Wilder said...

Hi Hillary,

I know this recent set-back has you pretty frustrated and I can certainly understand but keep positive thoughts honey. We all love you and we're sending all of our positive energy your way. We hope to see you at Dyaln's B-day party. Love Aunt Lysa

Anonymous said...

Hillar, I'm a friend of F's....think of you all the time and am forever amazed at your tenacity, courage, and strenght!!!! You are in inspiration to every woman out there...

Anonymous said...

Thinking of you and sending prayers heavenward in your behalf, and your family's. Take care.

Marleigh