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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Friday, April 9, 2010

My Mea Culpa

I have to offer a mea culpa. I had no idea the over powering response I'd receive from my april fool's joke. I apologize for the hurt feelings. When I first started receiving responses, I thought the threats to stop reading were counter jokes! I do have a morbid sense of humor, but I'll be sure not to "go there" again.   .    On the flip side, thank you all for caring so much. I have been to the point where I was considering stopping treatment. I was at this point in december. I never announced how seriously I thought about the possibility of a world without me. At some point, that event, those feelings, need to be processed. It's easiest for me to make it into a joke, especially knowing how close I've been, and how close I could come again, to making the decision to limit treatment.       This has brought light to an important issue that I've avoided speaking publicly about, and that's where to draw the line in treatment.   Overwhelmingly society supports the fight the disease full throttle to the end mentality. Anything other than taking this route is considered "giving up.". I'm happy I consider this point "acceptance," and at that point, what else can you do but joke about the situation. Feeling obligated to accept harsh treatments knowing it will cause suffering and may have no results is becoming too much for my body and my psyche. It's become too much for my family to handle. When the stress and suffering of treatment outweighs the benefit and joy it can bring to my life and those I encounter, then I believe the treatment is extraneous, even if it's life saving. I don't think about the possibility of ending up where I was: where not a single organ system works without medication, where I can not complete the simplest task, like showering, without assistance, where every action is so taxing on my body I feel like I could die with any movement.  It's too much to think about and would infringe my enjoyment now.  . But I have had time to decide where I will draw some lines in my treatment and what I will and will not do.   . For example,  I do not ever intend on undergoing a lung transplant. I don't even know if I'd accept another wedge biopsy. I probably won't travel to germany or run all over kingdom come, bankrupting my family, and spending my time and energy focusing on the disease. . I like where I am now. My treatment takes into consideration the life I want to be living and enjoying while still receiving life extending treatment. It minimally disrupts x's schedule and I can still enjoy my family and friends.     The joke was a nasty social experiment but for a moment you all felt how we have dealing with the issue of what is giving up and what is receiving treatment while living what life I have. Anticipatory grieving is a huge part of chronic life threatening diseases, and everyone who has encountered me and enjoyed my company has probably grieved in anticipation of my possible loss.  . As of now, I have plans to continue with photopheresis and active intervention. I have no idea what my prognosis is but I'm happy taking it day by day.


linda keenan said...

im very sorry that people who are perhaps close to you were offended but that joke perfectly illustrates what makes you really unique. you are not afraid to push the limits. the best humor hits the darkest places. and you've been to those dark places. as for 'giving up', i think being a brave cancer patient means defying these absurd and presumptuous expectations of what you should be doing (pulling out all the stops..) and doing what feels right to you. i dont know where the whole idea of brave got into cancerland, but frankly i think we'd all be better off if 'bravery' and phrases like 'giving up' just went away.

Anonymous said...

Hill ... I'm sorry ... I have fallen behind on the blog ... as such, I knew you'd written a blog that got a reaction & that it was meant to be an April Fool's joke. So it didn't have the same impact on me when I went back to read it that it would have had I read it timely. And while I wouldn't have liked it, I do hope people will get over themselves.

I don't know a person who has not tried humor that misfired. I also hope that you don't beat yourself up too much over this. You've got bigger fish to fry than worrying about a bad joke.

As for giving up ... I'm afraid I'm not as thoughtful as maybe I should be. I am one of those that would want you to fight on ... because my world with you would be a considerably different place. Selfish? Probably!! Insensitive? Again, probably!! But being an eternal optimist & believing in things getting better for you is just so deeply ingrained.

If the time ever comes that you wish to give up ... I hope I'm strong enough to honor your wishes & accept it. But for now (& with apologies in advance to those who struggle with this disease), I will admit to being one of those who wish for you to enjoy a better life ... here with us.

Take care girl ... know that you are in my thoughts.


Anonymous said...

Hillary, as I said to you at the time, "if you are up for sick jokes, you must be feeling better, and that is a good thing!"

As for people's reaction, you aren't responsible for that.

Keep doing whatever you need to do to feel well and have fun with your family and friends!

Always praying for you,