I guess the answer is: a bit of both. And you should know right now that I am seriously breaking "Pansy Protocol" with this post. I NEVER put anything "out there" until it is a Completely Finished Big Picture and I always hang it up with at least a dozen sturdy railroad spikes. Now I am flinging out a bunch of out of focus, poorly framed snapshots on pins and needles. I am a wreck.
What is wrong with me? Who, with "inoperable, incurable, unknown primary cancer", would not pay Cash American Dollars (hell, I'd even throw in some Fake Australian Pesos if that would help) to be told they had an 80% chance of being cured? I have actually lived long enough to have science come through for me. What the fuck are THOSE odds?
My oncologist called me on the phone last week and said he knew what kind of cancer I have and that I now have a chance at a CURE. I have "nonresectable bile duct cancer" and I can have a liver transplant. I gasped and shouted at him "WHAT? You could not be scaring me more or shocking me more if you tried." I am certain he put his phone on "mute" after that first of many more shrieks out of me during our conversation.
There was a real disconnect between my doctor thinking he was telling me good news and me hearing words that instantly made me want to run and hide under my bed. Some big ass (turns out it was mine) prevented me from getting completely under that bed and as much as I struggled and yelled "no no no no no", he deteminedly pulled on my legs. Good thing I had just shaved them. And, worse, he was not "pulling my leg." Then I spent the next 72 hours like a wild animal feverishly trying to chew off my leg to free myself from this trap I suddenly felt I was in.
For once in my head-in-the-sand approach to my cancer, I went all internetty. And inner-nutty, too. When I hung up the phone after talking with my doctor I was alone in my house. Good thing, because I scared not only myself but all the pets with the primal howl that came out of me and I was close to hysterical: crying and incoherent. Mr. Pansy happened to call me and I sounded like I needed an ambulance.
Even when I went on the internet and found "good" information, STILL I have continued to mope around in a puddle of tears and flop-sweat.
PROS:
--We now know I have bile duct cancer. All this time it has been "undiagnosed primary".
--It does not matter if we had known this 6 years ago. Or even sooner. So no angry "why didn't/couldn't you find this out sooner?"
--Because until fairly recently a liver transplant for bile duct cancer patients was NOT an option. Why waste a liver on someone whose cancer might come back?
--We know my cancer's name because my doctor HAD to do a liver biopsy a couple weeks ago. (more on this later)
--Bile duct cancer liver transplants have an 80% success rate (live for 5 years)
--I can have a live donor and don't have to wait for a dead donor. [looking at YOU to go get tested. har!]
CONS:
--if it doesn't work I am dead on the spot. I will lose what time I would have had left if I had not done the transplant.
--if it does work I would need to take immunosuppressive drugs forever. And they "can" cause high blood pressure (already got that); high cholestrol (who cares); diabetes Type 2 (that's a biggie but.......).
I just want so much to keep on with my cancer life "as usual": the weekly chemos, routine CT scans, occasional port replacement surgery, the new addition of occasional rogue tumor removal via RFA (radio frequency ablation). I truly feel so Perfectly Healthy. I can do anything I want and those things I no longer can do I am okay with not doing them.
And what's with my onco doctor? He is my Second Husband. Why is he trying to "divorce" me? haha.
Why do I have to make a "Pansy's Sophie Choice" of throwing away everything on a risky transplant?
Dammit, I really do know that my doctor IS giving me good...fuck, make that: GREAT NEWS. I can have a liver transplant. It is considered a cure. But now I know Just How Easy it is to hate that dreadful "5 years" timer overhead.
I am surgery-phobic. I could never get that rockin' set of boobs no matter if they were free. I could never do a face lift or tummy tuck or any kind of cosmetic surgery. I don't know why. Just not on any lists of mine.
In fact, the ONLY list I have ever had is my "TO DO" list. Of men. AFTER Mr. Pansy dies, so you can just go slap down that tent in your pants now, boys. Stupid horndongs. (nice typo/pun there, Pansy) Sheesh!
THIS ONE IS THE BIGGIE:
I truly cannot keep my "current cancer life as is." That ship has already long sailed away. And I didn't even really know it until right now.
At the beginning my doctor told me that if they knew that I had, say, liver cancer (since that is where the tumors are) they would have just done a liver transplant and we would have all gone on our merry ways. But with an "undiagnosed primary" all they could do was try chemo and see what happened. As we all know, I totally snuck under that limbo stick.
He also declined over the years to do another biopsy because a biopsy leaves a slight trail of loose cells which could rile things up and make the cancer go "boom". And since everything was "working", the risk of a biopsy rocking the boat was not worth it. And everything WAS working until.........
Summer of 2008 a singular tumor went rogue. But it was a tumor that had been there since Day One, so we took a chance on an RFA and, as we all know, I really snuck under that limbo stick. Sprained myself a little bit with the "post ablation syndrome" but even that was actually just another adventure.
My doctor is a wonderful guy and he really will not play "self fulfilling prophecy" games. So he does not go very much into the "what ifs" of anything. We just deal with the "what is-ers". But when that first rogue tumor happened, that is when my doctor started NOT telling me something.
Spring of 2009 another singular tumor has gone rogue. And it is a brand new tumor. Well away from all other tumors. Now my doctor had his back unwillingly shoved up against his own wall. The risks of a liver biopsy of this new tumor were outweighed by the fact that a brand new tumor is seriously bad shit news. I do not think he expected at all to learn what kind of cancer I have. That is ANOTHER medical advance that has occurred over just these past 6 years. And, now that we know, it does explain why my cancer is acting the way it is. Bile duct cancer is a very tenacious cancer that will do all it can to overcome chemo and it appears it has found a crack in my armor.
And here I thought I had just jumped into the ocean and was swimming for all I was worth. Who knew I was still tethered to that fucking cancer ship? Guess I'm gonna have to grab that tether and learn how to waterski. I already know how to "regular" waterski and even single ski. Now I have to also fucking throw in jumping tricks, probably while skiing backwards? Hmmm. What shall I wear?
[pulls on Big Girl Ruffly Rhumba Panties]
I TRY to keep remembering my deal with God so I am also upset that I am upset At All. I was supposed to not get upset ever again. Another thought that trails through my brain is this: if not for the brave patients and doctors IN RECENT TIMES going for The Brass Ring there would be no history of successful bile duct cancer transplants and I still would not have a chance. Now I have 80 chances (or some mangulation of math). Too bad that ring so closely resembles one of those Rings of Hell we all hear about. haha!
If they could step up to the plate, I really ought to at least honor them by trying to step up to my own [damn fucking piled with shit] Big, Shiny, Pretty plate. [makes forced smile]
I cannot wait to see my doctor tomorrow and hear what he has to say. [grunts for awhile] Well. I see I have lost my powers to "move the space and time continuum" so evidently I am going to HAVE to wait. hahahhahaha!
It's One Day At A Time for now. Tomorrow I say "go" to the doctor. dammit.
Hope I get time enough to buckle up.
Tuesday, September 15, 2009
Wednesday, September 2, 2009
Pansy had to get a Liver Biopsy...
and all they gave her for her agony was a single, ordinary, "flesh color" band-aid. God forbid ANYONE's flesh is ever THAT color. When will they humor me and give me a big old mummy wrap to impress/scare others? [pouts]
In case you need to ever get a liver biopsy done: they are totally a non-event. Anyone who claims otherwise must be some kind of Quite High Maintenance Bitch, says Pansy The Most Manned Up Woman in the Universe.
Of course, there were some wonderful gory moments: the vein in my right arm "blew". I told the nurse to never say that word in my conscious presence again. The vein in my left arm just would not cooperate and when I finally HAD to say "ow" she apologized and stopped digging. They decided they could access my chestport at which point I demanded to see their qualifications to do so. They did a remarkably believable approximation of what the chemo nurses do to me so I let them access my chestport. Without any numbing but sometimes you have to bite the damn crochet hook needle and just do it.
The doctor was not utterly optimistic before the procedure because he had several obstacles: a very specific and relatively small tumor in a liver crowded with tumors had to be biopsied; needle biopsies can only take limited tissue and that can result in a "not enough to make any determination" sample size....necessitating a do-over or, more likely, an invasive surgical biopsy. Then he reviewed my CT scans, felt around my liver and realized the tumor is miraculously quite set apart from any others and somewhat accessible, BUT ONLY IF I HELD MY BREATH. When I held my breath my expanded lungs pushed the liver out "just enough" which meant we could do the biopsy without a live-feed CT scan. This is desireable since the less radiation I have to be subjected to, the better. He ultrasounded me, got a lock on the tumor position and we were off to the races.
We worked out a deal where I would hold my breath and he would do what he could in that time frame; then we'd take a breather (pun!) and so we continued to shampoo/rinse/repeat until he got a tissue sample. THREE tissue samples, thank you very much. The creepiest part was the lidocaine injection. The doctor, of course, cannot merely numb the skin. He has to numb all the way down and into the liver. The needle's pointy part was seriously 6 inches long. And just about all of it got pushed with emphasis into my abdomen. I fiercely closed my eyes during that part. Ick. He'd stab, inject, the stuff would burn/sting until it numbed me, he'd wait a couple more seconds, stab further, inject, burn/sting, etc. That took about 4 deeper and deeper stabbings to complete. When he hit the liver there was a "whoosh" sensation of my entire liver/right side being flooded with something. Fortunately, the numbing kicked in REAL QUICK.
Then he did the part where he stuck something inside me to snip off tissue. And when it "snipped" it did so with a very loud, echo-off-the-walls, metallic SNAP. I never saw that device because I had put Super Glue on my eyelids by then. I was also getting "mild sedation" via the chestport IV. I would advise them occasionally that I really did not feel very sedated at all. They'd laugh and buzz me up a bit. We really had a good and cooperative time. The doctor was proud of me.
Now I am not to lift anything beyond 15 pounds for the next 72 hours. Like I ever lift that much of anything except maybe a pie. No activities that might "strain" me, like running. So I am going to include bicycling for that 72 hour restriction period. But, of course, I CAN go back to work FULL TIME as soon as tomorrow if I "feel up to it". I also decided that Mr. Pansy should not "feel up to it" for 72 hours. I might get a "strain". He definitely is going to be feeling strained by the end of 72 hours of celibacy. hahahhaha!
And then, this morning, Pansy Completely Forgot about no straining and let Mr. Pansy have his way with her! Then, in the middle of it all, HE remembered and got all upset and "stopped" to ask me if I was okay. When did HE forget that if Pansy is "not okay" the whole world comes to a screeching "not okay" stop? Doofus. But he's Pansy's Doofus so that's okay.
The mildy-sedated Pansy (Oh, ~weep~ she looks SO life-like.) Actually, I rather look like a "big old mummy" all wrapped up and kindy scary. Gotta watch what I wish for. haha!
All this hoopla is because 3 months ago a new tumor showed up on my CT scan. Drat. Then, the most recent CT scan showed the new tumor has doubled in size. Double Drat. So, Pansy will be getting some gawdawful procedure to remove said new tumor in the very near future. She will be SURE to regale you with the horrors of that exciting episode on the ongoing, hopefully long-running, mini-series: "Perils of Pansy". How worried is Pansy? She is so worried the tumor removal might put her on the "temporarily disabled" list, she will not schedule it before the upcoming Baby Pansy Wedding. I want that meal we're paying the Big Bucks for. Sometime after 9/19/09 [burp] it's more "off to the races".
In case you need to ever get a liver biopsy done: they are totally a non-event. Anyone who claims otherwise must be some kind of Quite High Maintenance Bitch, says Pansy The Most Manned Up Woman in the Universe.
Of course, there were some wonderful gory moments: the vein in my right arm "blew". I told the nurse to never say that word in my conscious presence again. The vein in my left arm just would not cooperate and when I finally HAD to say "ow" she apologized and stopped digging. They decided they could access my chestport at which point I demanded to see their qualifications to do so. They did a remarkably believable approximation of what the chemo nurses do to me so I let them access my chestport. Without any numbing but sometimes you have to bite the damn crochet hook needle and just do it.
The doctor was not utterly optimistic before the procedure because he had several obstacles: a very specific and relatively small tumor in a liver crowded with tumors had to be biopsied; needle biopsies can only take limited tissue and that can result in a "not enough to make any determination" sample size....necessitating a do-over or, more likely, an invasive surgical biopsy. Then he reviewed my CT scans, felt around my liver and realized the tumor is miraculously quite set apart from any others and somewhat accessible, BUT ONLY IF I HELD MY BREATH. When I held my breath my expanded lungs pushed the liver out "just enough" which meant we could do the biopsy without a live-feed CT scan. This is desireable since the less radiation I have to be subjected to, the better. He ultrasounded me, got a lock on the tumor position and we were off to the races.
We worked out a deal where I would hold my breath and he would do what he could in that time frame; then we'd take a breather (pun!) and so we continued to shampoo/rinse/repeat until he got a tissue sample. THREE tissue samples, thank you very much. The creepiest part was the lidocaine injection. The doctor, of course, cannot merely numb the skin. He has to numb all the way down and into the liver. The needle's pointy part was seriously 6 inches long. And just about all of it got pushed with emphasis into my abdomen. I fiercely closed my eyes during that part. Ick. He'd stab, inject, the stuff would burn/sting until it numbed me, he'd wait a couple more seconds, stab further, inject, burn/sting, etc. That took about 4 deeper and deeper stabbings to complete. When he hit the liver there was a "whoosh" sensation of my entire liver/right side being flooded with something. Fortunately, the numbing kicked in REAL QUICK.
Then he did the part where he stuck something inside me to snip off tissue. And when it "snipped" it did so with a very loud, echo-off-the-walls, metallic SNAP. I never saw that device because I had put Super Glue on my eyelids by then. I was also getting "mild sedation" via the chestport IV. I would advise them occasionally that I really did not feel very sedated at all. They'd laugh and buzz me up a bit. We really had a good and cooperative time. The doctor was proud of me.
Now I am not to lift anything beyond 15 pounds for the next 72 hours. Like I ever lift that much of anything except maybe a pie. No activities that might "strain" me, like running. So I am going to include bicycling for that 72 hour restriction period. But, of course, I CAN go back to work FULL TIME as soon as tomorrow if I "feel up to it". I also decided that Mr. Pansy should not "feel up to it" for 72 hours. I might get a "strain". He definitely is going to be feeling strained by the end of 72 hours of celibacy. hahahhaha!
And then, this morning, Pansy Completely Forgot about no straining and let Mr. Pansy have his way with her! Then, in the middle of it all, HE remembered and got all upset and "stopped" to ask me if I was okay. When did HE forget that if Pansy is "not okay" the whole world comes to a screeching "not okay" stop? Doofus. But he's Pansy's Doofus so that's okay.
The mildy-sedated Pansy (Oh, ~weep~ she looks SO life-like.) Actually, I rather look like a "big old mummy" all wrapped up and kindy scary. Gotta watch what I wish for. haha!
All this hoopla is because 3 months ago a new tumor showed up on my CT scan. Drat. Then, the most recent CT scan showed the new tumor has doubled in size. Double Drat. So, Pansy will be getting some gawdawful procedure to remove said new tumor in the very near future. She will be SURE to regale you with the horrors of that exciting episode on the ongoing, hopefully long-running, mini-series: "Perils of Pansy". How worried is Pansy? She is so worried the tumor removal might put her on the "temporarily disabled" list, she will not schedule it before the upcoming Baby Pansy Wedding. I want that meal we're paying the Big Bucks for. Sometime after 9/19/09 [burp] it's more "off to the races".
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