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."
Saturday, June 13, 2009
The Bowel Blog Part Deux
I bet you didn't really think I would have anything left to say after yesterday.
To be honest, I didn't remember what I wrote yesterday. The amount and combination of medications I took for relief will do that for a person.
When I started reading comments about "The Bowel Blog," I thought I had somehow, mysteriously posted my writing from bed this morning.
I just couldn't remember when I had found the time.
Thus is the risk of being a cancer patient, "chemo brain" or as I like to call it "cancer brain" is a very real problem. Just ask anybody that hangs out with me for any amount of time, but I at least try to keep it happy.
If you're not laughing at life you're not getting the joke, right?
As far as my bowels are concerned, I really wish this didn't have to be written.
I certainly wish it didn't have to be written with me as the prime example.
There is a reason why the scum of the town or netherworlds people prefer not to delve into are labeled the "bowels of the earth."
Bowel problems are embarrassing, but they exists. This is why I am writing about them.
They are extremely important to discuss with your providers, especially if they keep you running back and forth to the bathroom living life like you are hand cuffed to that one seat with enough privacy that you can comfortably do your business.
Bowels are also the cause of many "un-ladilike" side effects, like gas. Yes, lots and lots of gas, where ever you are, who ever you're with.
I look perfectly normal and healthy so on these days I have to have an contingency excuse plan if my body decides to eminate some stench I am not okay with.
You would think I was the CIA with my escape plans: there is the gas and go, there is the blame it on the kid/ dog/etc, there is also the heavy jacket tied strategically around your waist and waved to fan and protect.
But none of these solve the baseline problem. I walk a very fine line between dehydrating gastroenteritis where I'm living like a backwards fountain and immodium or lomotil are my best friends for the day to inflated constipation where cramps cause me to double over and I am popping triphala pills and eating dried apricots by the handful while still bloated to the point I look 4 months pregnant.Maybe I'll tell people I am pregant. That could also be a good excuse for a young, healthy looking woman not being able to control escaping loud noises from her rear.
None of my personal attempts at balance have kept me from trips to the hospital.
I know for many of you out there a trip to the hospital is a rare occurence. It is something to be avoided like the plague unless some major catastrophe has happened.
My life is a major catastrophe.
The hospital is my second home, doesn't matter which one. If I have to be somewhere, I am going to enjoy it, this includes hospitals.
I have the wisdom to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference. That is how the saying goes, isn't it?
I had packed my activity bag before getting to the Emergency Room. My fingers were crossed that I was showing up during quiet time.
ERs have patterns, ebs and flows of people, in a true emergency time doesn't matter, with abdominal pain abdominal distention, I could wait if I show up during peak hours.
Actually, there was a case very popular with the media a year or so ago where a woman presented to the Emergency Department complaining of abdominal pain only to wait, and wait, and wait, and then die where she had been waiting for a period of twelve hours.
I think this happened in Brooklyn, but take it from someone who knows, these things happen because abdominal pain is a vague symptom, a favorite among drug seekers, which causes can run the gamut from completely benign to catastrophe and death.
It is difficult to tell on presentation. My guess is this poor stalwart woman from Brooklyn put her chin up and undermined her pain and then she sat quietly in an environment that to get help you need to scream, kick and throw a hissie fit, and she was forgotten about until she perforated her bowel and died on the floor.
This poor patient died being a nice, ladylike, polite woman, following directions.
I can almost guarantee the nurses in the department knew very little about her existence. The triage nurse had likely seen her and determined her to be of mid-range acuity, then when he file got to the back she kept getting displaced by bleeders, broken bones, gun shots, beatings, heart attacks, strokes, respiratory failures, etc.
Not one employee capable of assessing her status would have gone to the waiting room to check her status. The waiting room is protected with guards, and for good reason, a group of sick, uncomfortable people can turn into a mob very quickly.
People are not themselves when they are sick. They are in pain, they are desperate to feel better, and they will attack a caretaker who wonders into the waiting room.
That's why these places have gaurds.
This all contributed to that poor woman's death, and I'm still not sure the case was reviewed enough to make a point that something HUGE needs to change so people don't die thinking they are safe in a hospital.
Thankfully for me, it wasn't peak time.
I made myself comfortable watching hgtv and chit chatin with the cool nurse who had traveled and worked in Compton, CA and Conn.
I love to hear stories.
This time the cause of my extreme doubling over pain was not gastroenteritis and water facet diarhhea, it was extreme constipation.
I swore I was normal!
I poop every morning. I'd gone before I went to the hospital. How could this be the case?
But it was and I liked the sound of that over "obstruction" which was a concern due to the extreme pain and distension so bad I couldn't take a full breath.
Luckily, Dr. R was on, the homeopathic guru who is comfortable recommending nontraditional natural treatments that work. He often tells patients to take a concoction of apple cider vinegar for viral sore throats. I bought the cider vinnegar to treat myself and the family. I was given directions to drink mineral oil (yuck) one ounce then repeat two hours later. Then two hours after that drink a bottle of citrate of magnesium, lemon flavored.
This wasn't so bad combined with my favorite fruit spritzers. Drinking that was fine.
Then I waited and I waited and not much happened.
I did go a little bit. I guess I wasn't as FOS as I thought I was because my stomach does feel better, but not quite great.
There is something going on in there. I did have to hit up the morphine today, and I don't like that.
Time will tell. I'm going to try to keep the balance between gastroenteritis and packed up constipation.
When I figure it out. I'll let you know. I'm sure this is all information you are clutching your seats waiting for.