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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Monday, June 21, 2010

Tweets From the Week

My blackberry wouldn't allow me to post while on vacation, but I didn't stop writing. Here are some quick thoughts that I'll call tweets from the week.

I don't feel like myself. I haven't for a while. 
I hope I'm not forgetting who I am.
 It was easier through the first two bmts to keep my sense of humor. 
I'm having trouble finding the silliness in my lungs failing.
 I love laughing. I love bursting into hysterical contagious giggles. 
It's been a while since that happened. 
Day-to-day I feel like I have to maintain emotional strength so my family won't break.
 I don't feel like I can have a single bad day. 
If I do, someone just hops on the band wagon.
 I want to vent in peace. I want the freedom to be angry and cynicle without someone screaming and hollering about how it's right or wrong or so much worse on them.
 I'd just like my feelings to be respected and acknowledged as okay, as normal. 
Feelings, like pain, is whatever the person enduring the experience says it is. 
I do want to be positive and happy and funny through this. 
It's important to me.
 People without sense of humors scare me.
 They rank right up there with serial killers and pediatric urologists. 
but I don't want to have to be that all the time. 
I still want it to be ok to be me. 

Would you rather make a historical lasting difference in society but live unknown through out your life or would you prefer 15 min. of infamy while alive? 

I want to know who, exactly, get's to decide the difference between art and scribbles?  And if I teach my now second grader (tear) the phrase "pollack splatter" or "pollackesque" would he get away with scribbling in art class?  At 18 m I matted and framed his first finger paintings and have since had them confused with high end art. I guess art mimics life hear, the image is all in how it is framed..... Or treated.... Or respected.                                  

I've been threatened. 
Threatened by my hematologist with surgery and needles again. 
If I don't drink and drink and drink to keep the fluids flowing I may need a stent to keep the passageway open. 
A tumor near the kidney is threatening to obstruct the ureter. 
 Guess who is drinking?  Guess who knows she may still need it despite drinking?
 No amount of fluids are going to slow tumor growth.     
  I start chemo next thursday.
  Thursdays will be treatment days with pheresis in the am and chemo in the pm with an appt in the middle.                  

 We're in dc now and off to check out the zoo.
 We've been watching animal planet to prep.

 I walked two miles today!!!! 
Not all by choice. Some was dragged out of my by misdirection. 
I won't you was leading the pack.
 Walking from the spy museum to the capital I got exhausted on the wrong side of the building. 
We hopped in a cab only to get ripped off by the driver. 
But j won't refuse to pay $7 for half a block ride and he's in charge of paying. 
That man would have gotten the 3.50 base fare and a lecture on lying and taking advantage of others from me.
 On those lines, dc is ok to get around in a wheel chair but I'm shocked at peoples rudeness. 
People still cut me in line or race to beat me to the elevator because it looks a little full. As if our lives need to be made more difficult. 

I wonder if the people making history know what they are doing when the do it or if a true historical event occurs naturally in the context of everyday living. 
Did florence nightingale know she was changing the face of nursing when she brought clinics to front lines or tracked cholera outbreaks alongside river flow patterns?
 I'm pretty confident rosa parks didn't think "hey, I'm making history today." When she refused to give up her seat. 
I can only imagine what was going through her head. 
If I could be remembered, if I could carve out a portion of history, I'd like to be remembered as a nurse patient advocate who blurred the boundaries btwen providers and patients in search of a more transparent, holistic care system resulting in better outcomes. I want our current clinic/hospital setting one day to be so archaic we're amazed it was ever used, replaced with a spa, vacation like atmosphere that promotes healing by taking into consideration neurological and psychological aspects of healing.
 Germany's clinics are basically spas, coming all inclusive with healthy meal planning service and in room massages.
 Barbados "get away" in vitro package is 42 percent more likely to result in conception. Could a "get away transplant" result in better outcomes too? 
I want education to occur in context where ailments will happen. 
Health care is trending towards this. It's also trending towards an outcome based reimbursement rewards system. 
If this occurs, we'll see less in patient care, more convenient hours of treatment, 3-D educational models that will take into consideration the stressors of disease alongside different learning types. 
Health care will finally embrace the person as a whole and understand that each organ system does not work independently and should not be treated as such, but is a part of a whole dynamic ecosystem that must be maintained collaboratively in union including the exterior environment and how it affects the dynamics within a person not only physically but neurologically and psychologically, two aspects of holistic care that we've barely brushed the surface of to harness the healing power they hold. 

I'm so lucky.
X has turned into such a little man.
He's spent the vacation wrangling with whether to run from exhibit to exhibit or push me around in my chair.
I have to tell him to leave my side and go enjoy.
He's actually listening to some of the readings and learning.
I thought the zoo would be the big event, but the spy museum ranked right up there.
The following morning at breakfast he was trying to pick out who, if anybody, could be a spy in the room.
But that wasn't even the final highlight.
He drank in the information at The Natural History Museum like an alcoholic. He just couldn't get enough of the mammals, then the reptiles, then the dinosaurs, and finally the gems.
I remember the sinking feeling I had as a child looking at all the dead animals. He didn't get any of that quesiness. He just thought they looked cool and kept snapping away.
We got to see a show on Dinosaurs in the IMAX in 3-D.
Had we stayed another night we would have come back to watch avatar.
We're all ready making a special date to go see Avatar The last Air Bender in Hookset in 3-D.
It's one of the boys favorites.
I'm not sure what he'll say was the best part, but I'm pretty sure the pool ranks up there.
Everyday after his swim he'd come back to the hotel room (I would nap while he swam) and report on the friends he had made.
He made a new one everyday.
The last day he made 12.
I guess we don't have to worry about him socializing. He seems to pick up fiends every where he goes, just like his mom used to.

1 comment:

Anonymous said...

Hillary, I am wrapping my arms around you, accepting you today just the way you are, givng you a shoulder and a hug...whatever you need.
Stay strong.