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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Tuesday, March 31, 2009

Going Blind

I’m going blind.
Not the “my eyes are bad and getting worse with age and I’m blind” variety or the “I woke up and had difficulty seeing so I’m being dramatic” variety.
It’s the “I knew I could lose my site as a result of graft vs. host disease post transplant” feeling.
It is terrifying.
I think it is made worse that I knowingly, willingly, and readily went to transplant with the knowledge it was a side effect.
I said okay to losing my eyesight to stay alive.
I said okay to any state between health and death actually, just some side effects are more common than others.
I’m sad. I want to feel bad for myself. I do feel bad for myself, but I won’t give myself permission. I knew what I was doing to myself.
I woke up one Monday, weeks ago, feeling sick and eyes hurting.
I called my providers and said I had conjunctivitis.
I really wanted to have conjunctivitis.
I do have conjunctivitis.
It just happens to be because of graft vs. host disease.
Now that I’m recovering from the para influenza and the subsequent bacterial infection, I am not feeling better.
I’m feeling worse.
Now I know which symptoms are from my virus and bacterial infection and which ones are from my chronic graft vs. host disease.
This sucks.
These effects could be lifelong.
My eyes are definitely the primary site of attack.
By attack I mean my new immune system does not recognize my eyes. The immune system, who I have named Simone, is trying to do its job and get rid of invaders like foreign materials, bacteria, viruses, and immature, rapidly replicating cells.
Simone is working hard.
She just doesn’t recognize my eyes or the lining in my mouth or my skin so she’s trying to kill them off.
On days she misbehaves, I call her Mona. Actually, I call us Mona.
I know I like this girl.
But Simone needs to love me on her bad days and stop being a mona.
I thought I would research what was available as far as treatment options for the eye pain since drops all the time isn’t helping the blurred vision in my right eye.
Then I wished I’d never looked.
The answer: steroids, maybe, could help.
Let me warn you, don’t look if you don’t want the answer.
Ignorance is bliss.
Now, I didn’t think it was possible, but I’m more depressed.
This is almost as bad as when I read Dr. Alyea’s research and realized he had specifically studied patients who had received allogenic transplants with C locus mismatches and determined a 30% survival rate.
Sloan and Kettering said I had a 50% chance with the mismatch.
Damn it all.
And since there is nothing that can be done to go back in time, I just should stop reading the research.
I can’t. I keep clinging to the hope that the truth will set me free. I intellectualize as my primary defense mechanism.
I do have an undying faith that the cure exists. I just need to find it.
I keep looking and finding bad news!
It’s out there, and I’m going to find it. First, I’m going to call Dr. A to make sure I can see it.
Please, take a breath and breathe a sigh of relief, I’m getting an appointment at Mass. Eye and Ear with some superstar who has seen this before.
I am getting the best care available.
I just hope it’s enough.


Anonymous said...

I am so sorry to hear about yet another impediment to your healthy recovery. But I also know how strong willed you are. Continue to believe in yourself and your total recovery.
As always, you are in my prayers.

Anonymous said...

Keep up the fight! Boston Eye and Ear is the best, and hopefully this Dr. will have some GOOD answers for you. Just remember the army of people that are thinking of you and praying for you.

DebA said...

What can we do but pray Hillary. I am so amazed at you. Your written words carry power and truth...they are well done and amidst all that you bear each day. Bravo. I just believe that this has to come out okay. But to be safe I will pray and ask my gals on my blog to do the same! (they may not be the best bunch to pray..but alas this is Maine).

Anonymous said...

I don't even know her and I already have a love/hate relationship with Simone!

I am amazed and inspired by your tenacity. Keep up the fight.


Anonymous said...

Hill ... I'm sitting here amazed at your strength & tenacity yet again ... you have courage that equals any I've seen in war ... you have the class & style of someone who can teach us all.

I used to work at MEEI (Ma Eye & Ear) ... & they do have the best of superstars there ... & I'm glad you are going there. Please know that you are in my thoughts constantly.

If there is anything ... & I do mean anything that I can do ... a quick call will get me to do it.

Stay strong sweetie ... & I'm with you all the way.


Cancer Becomes Me said...

Ah, you put me to shame.

My fight is over for now, it's all recollection at this point, but're still in it.

Saying I admire you sounds so trite, but there's no other words to explain.

Can we be seeing eye people for you? Sending you my prayers.

I'm going to link to your site on my blog if that's okay? I want my friends to know about you.