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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Thursday, June 16, 2011

You thought your day was bad

I forgot another reason why the terminally ill kill themselves in my article, just plain old, human, i-cant-take-it-anymore, frustration. 

I'm lucky I started having my break down a couple days ago, because if I hadn't, I may have lost my mind. I would have been pushed over the edge. 

Right after I wrote my "I'm broke note," the tax bill showed up. Yes, we pay our taxes every six months.

Then As if I haven't been suffering enough stress, I turned on the car to go to see my chinese naturopath, which I agonized about seeing since I'm BROKE but it is my life, I reverse, start driving forward, then FLASH, DING, lights every esp, 4 wheel drive, anti lock. 

"GGRrrrrrr, my breaks" I remember vaguely something last august during inspection aboit "possible" break prob. I drove to my parents and hopped in the 11 yo "silver bullet" a gray chevy town n country van with 100000 mi more than my car with lights on that I knew meant nothing. 

Then I proceded to the doc who says I must stop chemo now or I'll die. 
He's surprised I'm alive right now I'm so sick ,and my best chance is a very expensive herbal regimen, Tibetan Worms, and diet additions on top of the $570 monthly out of pocket we currently pay just for my medications.

Yes, I said it, you heard it. I'm going to go eat worms, at $800 an ounce for 2 months! I guess:
Nobody likes me, everybody hates me,
Think I'll go eat worms.
Big fat juicy ones, Eensie weensy squeensy ones,
See how they wiggle and squirm.

Chomp off their heads and squeeze out the juice 
And throw their tails away
Nobody knows how I survive
On worms three times a day.

He said even remaining in remission is possible with this (but he looked down and away, not meeting my eyes so I don't know if he really thinks that).

Now,  I need to consider how much my life is worth monetarily. I'm feeling a little devastated realizing we probably can't pay to save my life. It's looking clear that I'll die from what I've been screaming about and trying to save so many from: inability to afford the best, correct treatment.

I want to curl up in bed and stay there. Instead, I'm going to my sister's.

 Then when I rushed to get x from school for therapy I saw a very small, red, thin, matted mangy looking fox headed towards the schools field. I had the pleusure of notifying the school, which then had to call an emergency to get the kids inside from their end of year picnic because a possible rabies carrying fox is no joke. 

I would have shot it myself to save everybody the trouble, I just left my 22 home that day. 

And the good stuff didn't stop there though.

 X was a whine ass I wanted to drop kick (am I allowed to say that?) While getting an emergency shoes. 

I bought a $5 a pair of walmart shoes for him last week and got a $5 pair of walmart shoes, which didn't last a week. 

The secretary at the appt was so slow we didn't register until after 3, then she failed to page the therapist so we didn't get seen until 3:20, which threw everybody off. 

The therapist was hurrying and not understanding things. I tried to explain that X could not move out of our room to sleep upstairs because it's too far away for me, but she kept talking about the bedtime routine and how I didn't need to do it. I kept saying I know but the room is still upstairs and I just can't get to it. 

I was about to cry from being told he had to go upstairs even though there is no possible way I can get upstairs to take care of him when I realized she was so focused on bedtime she wasn't thinking about wake up time, which is my job. 

I wished I could have gotten a refund from our crappy service at the appointment, but healthcare just doesn't work like that. It certainly should.

Coming back was uneventful as we rushed to X's soccer camp, which was supposed to take place from 6-8, but exactly at 6 a storm starting moving in, maybe 6:02 a rumble of thunder came over, by 6:05 a clap of thunder followed by lightning officially canceled soccer, and everybody ran for cover like we were ants escaping from a kid with a magnifying glass. 

I tried to run home and go to bed, but I never just get to run home and go to bed. 

For some reason, through all these years, I do the "bedtime routine." Really, because if x is going to brush his teeth, take a bath, and be kissed goodnight, it's going to be me doing it, usually after I've all ready fallen asleep at 7, only to be woken up from my sleep to do what I can. If I'm not being physically woken up I'm being dragged out of bed.

At least now he's eight so I can ask him to do it himself.

 I'm going to my sister's in Mass. until Sunday before all my rage from the past five years lets loose on somebody.


Loraine Ritchey said...

Go to a quiet place and screammmmmmmmmmmmmmmmmm- I do when I am alone....... because if I don't I will explode from emotions and pain that is bottling up inside me every day and I am not dealing with one tenth of what you are dealing with ..... hang in there Hillary ......... and don't eat the worms.... I know they are full of protein and good stuff but don't eat the worms ... I am sure you can get the same nutritional benefit elsewhere - I will google and see what they have and what is similar.....

Anonymous said...

I know you will try anything and I don't blame you however, expensive worms. What is the benefit and why can't you just did them up for free. Unless these worms have already been proven to something really special I would consider this a real scam

Loraine Ritchey said...

Hillary afer some very quick research it looks like it is the fungus that isassociated with the worms that is supposed to have healing properties...... but I would think you would have to ingest an awful lot to see results if any.and to put a fungus into your system in its weakened immunse system may be dangerous...... please be careful