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, March 23, 2011

 Ugh, I made it out of the hospital. I made it home, nephrostomy tube and bag in place. 

What does this mean? 

It means I'm peeing out my lower back into a bag, and it doesn't bother me at all. 

This is the first time I've been released from a major procedure and immediately accepted my new body image.

Maybe I can accept this because I've come home with so many tubes so many times feeling absolutely awful, so now, with peeing out an artificial ureter and fatigue as my worst symptoms, the tube doesn't bother me at all. 

Usually, it's weeks or months for me to understand, accept, and incorporate into myself how the new appendage helps me. 

Usually, by the time I no longer need the oxygen tank, the drainage tube, whatever, I've just finally gotten used to the idea and found how to live with it comfortably day and night.

My mom and I quickly came up with a solution about how to hide the evidence of my procedure, as we have so many times before with draining chest tubes, triple lumen catheters,  and even my medi-port, she gave me her new Couch bag that slings over the shoulder and hangs at my hip.

My nephrostomy bag hangs innocently in there, looking more like a fashion statement than an annoyance.

Hiding my procedures started as a way to help X deny what is happening with me.  Early in my hospitalization this past week, when I was uremic and actively sick, we just pinned a towel over the evidence. 

Now, I have a fabulous purse it hangs in that could also hold my meds and money.

Today, I'm exhausted. I'll be headed back to bed quickly.

I'm irritated I tried to alter my blog to create a second page. What the hell was I thinking? I certainly didn't do anything crazy like read the directions. So now my second page has taken over my first page that I'd loved and nurtured for years.

But whatever. I'll deal with that later. Today, I'm sleeping. I'm trying to drink 3 liters daily. I have a follow-up with my heme team tomorrow. 

The plan is to cap the tube and bag, maybe tomorrow, to make sure that I still have the ability to urinate on my own. The stent will remain in my kidney until their is evidence that my chemo has shrunk the tumors enough to allow the passage of urine through the ureter.

Baby steps. Everything is moving step by step, and I'm okay with that. I'm ok with that because I'm here. 

This is how I feel today. 

But this was how I felt, in a moment of clarity, in a moment when I remembered why I was fighting and what I really want:
------Original Message------

As sick as I am, I feel so lucky. I'm lucky I have a close family who I love and understand. They are my priority. They come first, because of this, I'm a fortunate woman. I love them and they love me, unconditionally. This extends to my friends, whom I love like family. I'm so fortunate for all who take care of me. I wish I could recipricate. Their blessings are coming. Whenever they are in need, they'll have their needs provided. Some people never learn this, some people never know their priorities and what's important. What I've been able to learn first through life, then made clear through my disease are my priorities: God/a higher power comes first, family/friends are second, work/productivity is third. Beyond this comes school/learning then hobbies and fun. Through out my disease when I become overwhelmed, I take a step back and evaluate if my actions are in accordance with my priorities. If they are, I will be happy and worry-free. I finally understand why I "shall not want," everything worth living for comes from the heart.


stonepost said...

Hillary, you are such a fighter and an inspiration and you make me feel so guilty! We had the same disease with such different outcomes! You are a strength that I admire!

... said...

Wow. That original comment at the end was beautiful. God Bless.