Mask

May 15, 2007 | Filed Under cancer, feeding tube, medicaid, radiation, stress | No Comments

Today has been a busy day already.  It started early in the morning with a trip to the social services office in Vineland.  Before leaving home, while brushing my teeth, I noticed some bile had drained out of me and into my feeding tube.  Actually, it was quite a bit of bile.  I drained it out until the tube was clear.  Wasn’t sure it was normal so I tried to get ahold of Dr. Tassakis’ office.  He didn’t come in until 8:30 according to his answering service.  So I went ahead to social services.  It’s the usual bullshit with social services — sign-in, take a number and wait.  Then when I got back there all I could do was talk to someone about getting an appointment to come bach to  apply for Medicaid.  Another form for the doctor to fill out and more running around to fetch documents. I got home around ten and got ahold of the doctor.  He said to come a 10:45, so I’m back to Vineland.  He tells me that it’s not unusual for bile and various stomach contents to leak out of the tube, tugs around on it and loosens the band near the stoma.  I’m back home by 11:30 — enough time to answer a few emails and collect myself before heading to the cancer center.  Today is the day they’ll fit me for my radiation mask. 

 So I get there a little early — my appointment’s at 1pm, but I’m there at 12:45.  I tell one of the nurses there, Shirl, that I need the doctor to fill out these two forms for social services.  She says she’s the one who handles the paperwork and grabs the forms but can’t promise she’ll have them completed this week.  Stuck between a rock and a hard place, everything dependent on when this one or that one will complete one form or another, I shrug but am disappointed.  I am excorted back to the men’s dressing area and change into a gown.  I’m nervous and pace around the room.  I am distracted for a moment by news on the TV that Jerry Falwell is dead.   Rats, I think, should’ve had him on my Dead Pool list at DirtyRotten.com.  Oh well.  A woman pops into the room to tell me that they’re backed up and it’ll be another 45 minutes before they can get to me.   More waiting — great.  I want to get this over with.  But, I sit down, finally and attempt to watch television.  After flipping channels, I settle on an old episode of Judging Amy.  After a bit, a man stumbles into the room.  He’s just had radiation and is in bad shape.  He can barely stand, much less walk but after bracing himself against the lockers for a few moments he manages to make it to the dressing room.  Eventually he comes out, fully dressed and walks slowly out the door.  More time passes and the therapist — Amy comes to get me.  She explains the procedure but doesn’t really communicate fully what an ordeal this will be for me.  I’m instructed to lie down on a long board facing the CT Scan machine.  After making sure my body is lined up properly, she applies the mask.  It goes on hot and wet and I suddenly find it hard to breathe.  When it dries, she marks it in various places.  Several minutes later, they start to scan me, but this is nothing like all the other times I’d been scanned in the last several months.  This is even worse than the MRI I had done on my tongue and throat awhile back.  I’m wearing this fucking mask and I feel like I’m suffocating.  I have to keep still, but I’m taking deep breaths — sucking air through my nostrils as best as I can, but it’s not enough.  Although, I’m not entirely sure how long I was wearing the mask altogether because I don’t know what time it was exactly when I was brought back into the CT room,  it’s about 20 minutes ’til 3 by the time I’m escorted back to the dressing room, so it had to be at least an hour in the mask.  

People keep telling me how strong I’m being.  Some days, they simply have no idea.  

Welfare Office

May 10, 2007 | Filed Under cancer, charity care, feeding tube, medicaid, social worker | No Comments

I’m supposed to be home resting.  I’m still sore from the feeding tube and haven’t been allowed to eat anything for 36 hours and won’t be able to eat again until I get out of the welfare office.  Don’t even know how long I’ll be there, but . . .

I get there early like I was told, made sure I’m the first one to sign-in at the front office.  Pretty soon, the waiting area is standing-room only — just like down at community healthy.  Although, I am the first one there, I am the fifth one called into the office in the back.  The caseworker is friendly enough, but it’s as if she’s never met anyone who doesn’t want to be on public assistance.  She keeps asking my why I waited so long to apply and my only answer is that I didn’t think I’d have to.  In fact, if my diagnosis had been anything less than cancer, I still probably wouldn’t be in this office.  The rest of the people there out in the waiting room — you could tell they’d grown up in this system, knew their caseworkers like another member of their family.  My family had never had much money, but my parents would do anything not to end up on welfare and raised me to be the same.  I’d always paid my own way.  And as long as I could work, I didn’t have to worry.  Just shows, what one devastating turn of bad fortune could do to a person.  But this process talking to a stranger about my economic and health woes didn’t make me feel better.  It was a pride-swallowing, experience and just reminded my how far I’d fallen.  Lots of forms to fill-out and sign.  More forms to take with me.  Feels like a drowning. My lungs filling with dark water and I can’t fucking breathe.

Feeding Tube Pt. 2

May 9, 2007 | Filed Under cancer, feeding tube | No Comments

The last thing I remember before losing consciousness was the nurse telling me what beautiful, clean hands I have and complimenting me on shaving my own belly for the procedure.  I did it because I’m a hairy guy and the last two procedures I had, they got me good with those cheap plastic razors, yanking gobs of hair out by the roots.  I figured, this would be easier on all concerned.  anesthesiologist had allergies and was sneezing.  After a sneezing fit, she stuck me good and just before passing out, Dr. Tassakis, the same man who handled my liver problem back in the Fall 2006 came into the room.  The next thing I remember I was waking-up in recovery with this stange tube sticking out of my belly.  The dope was starting to wear-off and I was in more pain than I imagined I’d be in.  It was like when I had that liver biopsy some months back only worse.  I kept thinking, how will I get used to this and I hope I never have to use this feeding tube.

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