And now back to our regularly scheduled Cancer program!
A New Day Is Dawning!
After I arrived back at the apartment, still steaming about what had just transpired, I called my Patient Advocate, Ashante. I explain all the mess and that I was going home. I will find doctors that have their shit together! I'm tired of waiting. I'm tried of things not working and breaking. I'm tired of not healing fast enough. I'm tired of having my stomach churning and every time I go to have it looked at something else stops that from happening. I'm tired of nothing getting done....I'm tired dammit!
I'm trying not to be the "pain in the ass" patient. I don't want to sound like a whiner or complainer, but I don't understand why this is so difficult. Ashante is kind and understanding. She doesn't want to see me leave but understands my concerns. "I don't think you're being unreasonable. You have every right to be angry. But you still need your feeding tube checked and you might want to reconsider leaving until that has been addressed," she politely suggests.
She was right. My stomach has been such a mess, which adds to my misery. I already have an appointment set up for tomorrow to have the tube checked. Just one more day and maybe my stomach problem will be relieved and I can stop taking my HINDU RELIEF and stop sleeping with my toilet!!
Ashante asks to make a few phone calls and then will call me back. When she calls back she has verified my G-Tube appointment in the morning and sets up another simulation appointment tomorrow afternoon. She agrees to meet me after my G-Tube check in the morning and will personally bring my stent from dental with her. At this point, reluctantly, I agree to continue with my treatment. But take note, I'm a man on the edge!
Tuesday morning is a new day and I'm trying to face it with a positive attitude. I arrive to my G-tube appointment. I'm escorted to a changing area, given a gown, and told to get on the gurney. I'm wheeled into a familiar room. A room like the one my feeding tube was originally placed. A kind doctor and her nurse prepare me and make me comfortable. I'm fully awake for this procedure. A drape is placed between my face and belly, so I cannot see what the doctor is doing. What I can see are three flat screen monitors that show my innards! I see my stomach and the tube. I can make out many of my body parts. Man was that weird to see.
Then the doctor pulls on my tube extracting a full 5 inches! It tickled a bit as she pulled. I can see on the monitor that my Dietitian, Denise was right. The tube had actually migrated into my small intestine and was dumping my formula directly into it, bypassing my stomach. I watched the monitor as the tube popped out of my intestine and flipped back into my stomach. Damn, technology is amazing!
That was it? I waited a month, with my stomach bumping and grinding, only to have someone pull the tube out 5 inches to resolve the problem! I could have done that myself! That's what was causing my stomach to be a mess all this time? I asked when the stomach problems would be resolved and the doctor explained, "Within 24 hours." And when can I eat? "Immediately."
I waited a month, missed 3 prior appointments due to other complications, and in less than 10 minutes my problem was resolved! OK, maybe today will be a turning point and the rest of my stay here won't be as chaotic.
I'm wheeled back to a recovery area and given some formula. I'm still apprehensive about feeding myself even though I know my tube issue is resolved. As I feed, Ashante arrives with my stent and gives me my simulation time. She's very kind and very helpful. I know it's her job to resolve problems like mine, but I'm very grateful. I guess once you call in the cavalry everybody is on pins and needles trying to avoid any further confrontation.
After having...well lunch, I guess I should call it, I make my way down to radiology with a "Don't Fuck With Me" attitude. I'm still a man on the edge! I wait to be called. Odd I wasn't in my seat 10 minutes and my name is called. Humm...a new day is dawning!
Back onto the black wooden surface they call a bed. I'm told to place my stent into my mouth and strap myself in. The doctor begins to mark my face and body, then cuts out a thick clear rubber material placing it upon my neck with tape. I think they called that a bolus? The mesh mask is lowered onto my face and I'm soon in suspended animation, motionless. I'm surrounded by a half dozen people all scurrying around me like busy little bees. Calculating, discussing angles, taking pictures and directing lasers. This is more like a mock up, a drill preparing for the day the real radiation therapy begins.
I'm extremely nervous. I can't move, can't speak, and I'm starting to understand how a person in a coma might feel. They say when you're nervous you should think of people in their underwear. Well that never worked for me, but I thought I'd try given the circumstances. I begin to uncontrollably laugh even though I'm restrained. I vision everybody in black leather underwear. After all this is the dungeon. OK, this isn't working. I feel like I've just been abducted by aliens and I'm being poked and prodded for my DNA. This is taking forever, but there is a team of physicists that must have all the calculations correct or they could damage areas of me that weren't intended to be radiated.
This seems to take about a half hour and then I'm finally released from my prison. The relief is written all over my face I'm sure. My mouth is stiff when the stent is removed. I'm promised the time I will be strapped down for radiation will be more like 10 minutes, when we begin the actual treatment.
I'm told to take the wax stent back up to dental and they will fabricate the real one that will be used in treatment out of a clear plastic. Gee, what a great idea. Something harder than wax so it doesn't break in half again! I can't understand why that wasn't done in the first place.
After my visit to dental (not my favorite place by now) I head back for the bus. I'm scheduled for a radiation orientation on Friday and then I will receive my schedule for treatment. All I know at this point is I will be receiving 2 gray (Gy) of radiation per day, a total of 60 gray, over a 6 week period. (gray, or Gy (physics) -- Encyclopaedia Britannica) I will have 5 treatments per week, one per day, weekends off.
Friday arrives and I've had a few days of much needed rest. I think I slept straight through! In my class are four other people, all being treated for some type of head or neck cancer. I'm the youngest of the group and appear to be in the best shape. I figured if this were a contest I'd win hands down!
The nurse tells us what to expect. It's not pleasant. The skin will redden, become raw and sore to the touch. It might break down and weep. A moisturiser, Aquaphor, much like Vaseline is recommended. Daily exercising and stretching of the mouth, jaw, and neck is a must. The mouth will become inflamed and pain medicine will be needed. (My favorite part...WEEEEEE!) A feeding tube is recommended. The throat will become raw and sore. Most people wont get enough nutrition and lose too much weight during the process. For once I'm ahead of the game. I'm the only one with a tube placed in the class. The saliva will become thick, a milky yellow, and difficult to swallow. The salivary glands might slow secretion and cause the mouth to become dry. This could be a danger to your teeth. A mouth moisturiser is recommended, along with oral rinses, as the mouth will also become acidic. All sense of taste could be lost. Again I'm ahead of the game. I've already lost 1/2 my taste when I lost 1/2 my tongue! Any hair in the radiation field might fall out and perhaps not regenerate. And most important drink liquids, even if it's just a few sips! You must keep the throat muscles active or there is a chance the throat could atrophy. Boy this sure ain't Disney!
The reality of the severity of this is starting to set in. This is some serious shit! After orientation I meet with Dr. Morrison for specifics about my treatment. A nurse asks what time would work best for my treatment everyday. I figured anytime after 11 AM would work. A short time later and the nurse comes in with my schedule. He hands it to me and I read my treatment time. It's 8 AM! There's NO WAY! I'd have to get up at 4:30 AM every morning to make that time! I'm not doing it! I have to shower, which takes a long time because of all of my wounds. Then the wounds (arm, leg, feeding tube area, and butt) all need to be treated and dressed. After that, an hour for feeding. Then there's the wait for the bus and the ride to the hospital! NO WAY!
I hand him back the schedule with a simple, "No." He asks, "What's wrong." Then hands me back the schedule. I hand it back to him and say, "I'm not coming in at 8 AM." He hands it back and says, "But that's the time you were given" I hand it back to him, "Then why did you ask what time worked best for me in the first place?" He hands it back to me and says that was the only time available. I push it back, "I'M NOT DOING IT FOR 6 WEEKS! NO!" I'm beginning to feel like John McEnroe. This isn't a discussion, it's a tennis match! The poor nurse attempts one last serve. As he begins to hand me back the paper I now feel like Tiger Woods. I ask if he plays golf. He has a puzzled look on his face and says, "No. Why?" Then in anger I say, "If you shove that piece of paper in my face one more time you're gonna know what a hole in one feels like! Get that time changed! NOW!" He scurries out of the room. For now I've won this match!
He soon is back in the room, eyes to the floor, handing me a new schedule. My call time is 4:30 PM. That's doable. I know what some of you are thinking..."He's baaack!" Yes, I think at this point I was starting to feel like my old self. I'm tired of taking all the crap. Time to give some back!
My 6 weeks of treatment begins next week. I'm not sure at this point when I start Chemo. I have the weekend to rest and it should be a pleasant one now that my stomach is tame. I just want to get this all over with, go home, and get back to living again!
NEXT BLOG ENTRY (CC14)
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For first time readers...my journey begins here: THE VERY FIRST BLOG POST (CC1)