August 30, Journal Entry
Wednesday morning in the hospital. Well, yesterday was a big day. Lots of crying and wondering. Dr. Lewis called me in for an ultrasound at 1:00. It looked bad. The initial suspicions were about tumors in my pancreas (fatal within months). They shipped me off to St. MarkÕs hospital in Murray where I got my own room and rapidly did a chest x-ray and a CT scan of my entire chest and abdomen. I recommend avoiding CT scans as you have to drink lots of barium citrus goo and get shot up with iodine as you get slipped in and out a big doughnut. Mmmm, doughnut...

Anyway, it looks like the latest diagnosis is lymphoma the" cancer to have if to had to choose one". Personally I never chose any cancers, so IÕm not sure what IÕm doing with it. Today is going to be gnarlier than yesterday, IÕll be getting a drain put in to help me loose my lemony complexion. Also, IÕve got a biopsy coming up, which I hope brings good news.

Then, hopefully I can eat as IÕve been starving for the past two days. (it all started yesterday morning. As my fork hovered over my freshly cooked eggs and tofu sausage, the telephone rang. It was Dr. LewisÕ nurse telling me not to eat until after the ultrasound... and I have been dreaming of eggs and sausageever since!)

 

The X-Ray that rocked my world. August 29th, 2000.
My heart is in the middle, the tumor is on top.

 

September 1, Journal Entry
Well, the horror of my situation finally hit me yesterday. I was starting to get irritable and even a little panicked to have some time to myself. I started telling people to leave. More people came. I asked them to leave. The phone rang, dinner came. Every time I turned on the walkman and settled into the Pink Floyd , something would ring or knock me back to reality.

Eventually, things did finally settle, I was in with the tunes. I was just about to dig into some turkey. On a separate plane, my mind was coasting through an imaginary narrative. I thought maybe I could teach art to kids while IÕm recovering. I imagined a young boy asking me why I was bald? "Because I have cancer." , was my response. I started crying immediately upon the though. Finally, I have admitted it to myself, all the pin-pricks, needles, nausea, and all. I have cancer...

So yesterday I slept in well. Chris did too (she spent the night on the floor with her sleeping pad). I am glad she stayed as I needed a lot of help getting up and moving around, ItÕs quite painful having a tube stuck in your side. Anyway, I had barely done anything all day when Dr. Harker came in with a lab guy and two med. students. They took a sample of my bone marrow. Apparently the whole procedure was very painful and I cracked jokes the whole time and a med. student started to pass out, but I donÕt remember any of it. All I remember is getting a shot of something and Dr. Harker, in the end, showing me my marrow lazily drifting in a fluid filled vial. So did I feel the pain or what?

September 2, Journal Entry
In the sleepy hour of 5am, the vampires (phlebotomists) come in to take my blood. I asked to have one of the red stickers she makes off of my bracelet to stick on the vials of my drawn blood. I figured it would look good in my journal. So, yesterday I thought the poking and prodding was over and that I would get to go home. When a new nurse hurried in and asked if I had been eating, I knew that was probably no longer the case. I was right. They had decided to advance my liver drain into my intestines so that I might digest more properly,so that I donÕt have "the bag" strapped to my thigh and so my liver could better process all the wicked drugs I am about to be taking.

The operation hurt. I could feel it all and the drug that was supposed to make me sleepy and forgetful didnÕt come into play until an hour later. Woops. I was in serious pain directly afterwards, but no one could give me any more relief as I was already maxed. I therefor searched for the sleepiness buried somewhere inside of me and fell fast asleep.

Woke up feeling good. I had dinner, took a short walk and played cribbage. Chris slaughtered me by catching 10 points I overlooked in my own hand. I became ready for a nap, again, Chris was becoming obviously restless. We aborted plans for her to spend the night again and she left to play with the dog. I was actually lonely for a couple minutes as IÕve become used to waking up and seeing Chris next to me, on the floor and smooshed up against the wall so she wouldnÕt get stepped on by one of my night visitors.

September 7th, email message. Subject: Hello? (Summary of what's happened up to now)
I've had a rough couple of weeks, and actually a horrible summer trying to figure out why I was never up to snuff. Unfortunately, it all came to a head right after the first day of school [August 28th]...

The day after our first class I turned yellow! That means my liver wasn't working (not good). That was thursday. By Carols class the next tuesday, I was in the hospital having all sorts of tests, scans, and "procedures". Turns out I've got an agressive case of Non-hodgkins, large cell lymphoma (For healthy folks that avoid hospitals like I always did, that means cancer): A tumor bigger than the size of my heart is crammed into my chest and smooshing off my arteries and lungs, and a tumor in my gut is cramming off a bunch of my digestive proccesses making eating not so fun anymore (I needed to loose some weight anyways, ey?).

I got out of the hospital on Saturday the 3rd. I have been laying low trying to recover from the implantation of my new plastic common bile duct/drain/spicket, researching treatment options, coping, and trying not to get overrun by visiting and calling friends and family bringing flowers, TV's, Holy water, Ben and Jerry's Ice Cream and accupressure wrist bands, etc..Attention has been good, but it has also been draining. I now place a premium on "solo" time.

Chemotherapy has been post-poned once already as my body is still so messed up from tumor pressure, the chemo would do more harm than good..(ie: kill me). Anyways, what bumms me out the most is not being in the trenches with you guys. My Dr. reccommended not going to school this semester, and so far its been impossible, but I'm planning on getting back and involved soon.

First Chemo, 9/8/00. My Nurse is saying, "here's your free haircut"

September 8th, email message. Subject: Possible test study candidate

First chemo session is in my blood as I type. Only side effect so far is horrendous medium to distance vision (prednisone) and red urine (adrimyacin) I'm drinking tons, as reccommended. My dr. proposed that I may be a candidate for a study group. I would either recieve the exact treatment, or I would receive a heavier, shorter dose of chemo, same drugs just more, and a bone marrow transplant, and most likely 1 to 2 weeks in a hospital. The tests is to see wether it's better to knock the cancer hardest right off the bat or not... What do you think? Could be overkill, could help make remission more permanent (ahh, that sounds nice) I have to let him know by next chemo session what I want to do...

Getting tired of these decisions. Can't someone just zip me up in a bag for a year and wake me up on a powder day when I'm all better????? Modern medicine needs to get it's act together!

I'll let you know how I'm feeling tomorrow. I'm really just sitting here trying to feel for something... Going to watch some movies this weekend. What are you up to? Can't wait to ski!

This is what I look like when zonked out on Attivan. I completely blacked out spending all weekend in this hammmock. It wasn't until I saw the photo that I believed it.

September 11th, first group email. Subject: Re: hello

It's been a hard weekend of trying to maintain conscousness. I've been in and out of it for the past three days Since friday night following chemo. I've been ultra clumbsy, groggy, unfocused, and subject to breaking out in tears at any moment. The big news today is that I lost my taste. This could be for a while, or even for a year! I have a mouth full of "aluminum cans" Another one of my worst fears has come true, even water now is completely unappealing. It gives me the sensation of drinking salty Saur Kraut juice.."bagkh" Despite these new setbacks, I feel like I'm eating constantly, but I'm not gaining my weight back. I have hope though. These are supposed to be the hardest days (directly following Chemo) I have a stack of books and movies I hope to start tomorrow, and maybe even some work!!

 

September 13th, group email. Subject: Tastes are back!

I can almost enjoy food once again! I've been pounding protein to regain my weight, but I've got no flab to show so far. what else is new? For the first time I can feel pain coming from my chest tumor. THe Dr.s suggest that's a sign it's melting......"Help me, I'm melting!" So the pain is a mixed blessing. Energy was a bit low today so I surfed ski sites, picked out a new helmut to keep my bald head warm on the slopes, and some skis to match.

Gallium Scan from September 14th. Dark splotches represent lymphoma tumors.

September 14th, group email. Subject: Hair is gone!

Wether than wait for the inevitable (which would have been in a couple days now anyways) I launched off my hair today. The fact that it had all finally gotten long enough to neatly fit into ponytail did not make the job any easier, but I'm already digging my new "look", which places me somewhere in the sewers of "The Matrix".

The entire event was shot digitally for your viewing pleasure. You may view this "shortened length" feature on my website as soon as my technical master gives me a hand with the proccess which he assures me is "easy". I'll keep you posted.

Feeling good today. I finally broke down and went rollerblading. I had been afraid of fallling and accidentally yanking out my biliary tube, but hey, sometimes you just gotta shred.

I went to REI today to touch skis and to try a helmut on my little head, but the fools didn't have any ski gear out yet! WHATS THE HOLDUP! Don't these people know how important the scent of new skis is to my treatment! It's the best Chemo there is! I'll take a shot of fresh P-tex any day over vincristine. That'll melt em.

I wish I had walked about in public more with my wonderful nasal attachment.

September 22, group email. Subject: not for the squeamish

Well, I just haven't been my usual self since last thurs night. That's when and incredible abdominal pain rolled in, started plaguing me, and has kept me bed and toilet ridden since..... Friday morning I went and had my tube checked. The doctor decided to yank out (literally) the old one and to shove in (also literally) an new one. My pain never went away but now it had the "adjustments" of the new tube to give it complexity. This was also probably the third day I had not had a BM, and had not yet made a mental note of it. Saturday the pain was incredible. I called into the doc to have a pain reliever prescribed. The day fluctuated wildly between pain induced semi-suicidal turmoils, and pain reliever induced "the world is a beautiful place" respite. Unfortunaltely, the prescription wasn't really enough so I had to experience both as I stretched the pills out to last through the day. As night progressed, I reallized my BM problem. As directed by the Dr. I started bombing myself with laxitives. Sat night Scott took care of me and spent the night. We watched "the stigmata". It was hard for me to watch, but a very interesting flick. Sunday dad arrived, to the rescue! Pain continues. The laxitives don't work.

Watched "romeo must die" and it was a lot of fun. Stayed home all day. Monday saw Dr.. My bloodcounts seemed normal. On schedule for chemo on friday the 29th. Despite the fact that i've moved to a stronger prescription laxitive it's still not working. The chemo treatment simply put my bowls on hold... Saw what i guess is a kung foo classic "iron monkey". Well, to sum it up, a new laxitive started working tuesday night. I was cleard out by wed. My guts are still screaming in fury wondering what's going on, I guess. At least I've managed to stop taking pain relievers, mostly. yesterday I weighed myself first thing in the morning. I weighed 107! Then I took a look at myself in the mirror (side-view) and I noticed that my butt was completely gone! I know some people have been saying this for years, but i noticed that a huge chunk of my biggest muscle had just completely faded away.

That's when I decided to start getting fed in my sleep. Of course this sounds easier than it is. This morning I had a tube poked up my nose all the way to my small intestine ( this tube actually crosses the path of the biliary drainage tube in my duodenum). A home nurse came this afternoon to show me how to hook myself up to the juice that's hopefully gonna give me my butt back...

Thanks for everyones concern who notice the gap in my updates...I've been trying but just haven't had the gumption to use this device...Didn't check email for two days and today there's 19 new messages, wow. Anyways, With any luck I'll be back on schedule soon. Talk at ya.

 

September 23rd, group email. Subject: Arghh!

my VCR blew up today! a fate worse than death! now what am I gonna do with myself?

The "Cancer Shelf" was created so I didn't have to look at cancer paraphenelia all over the house.

September 25th, group email. Subject: fast recovery

yup, I made a fast recovery: I already have a new VCR. Yes, the movies are flowing once again. Well, I've been having some decent days lately: I've been able to start taking walks again. Shorties but goodies. My walks have to be short to allow me enough time to eat! Yes, eating has become my full time job as I try to regain my butt and more. 2nd chemo is coming up and the sooner I can get this feeding tube out of my nose the better! Another new development in the chemo world: The anticipation is over, my hair is finally starting to fall out! It doesn't really matter now though because I've started wearing a thin black knit hat all the time, anyways. No one will ever know!!

 

Sept 27th, group email. Subject: Idea solicitation

Been feeling good lately, up to going to the video store even.

<< previous month

journal index

next month >>