Saturday, May 29, 2010

Long weeks

This is the first morning that I haven't been treated to puking, so I thought I'd drop a quick line.

My right eye is a mess. I get sea sick using the computer.
Email is nearly impossible.
Facebook is a drive by at best.

For the first time in 30 years, I do no own a car. With my eyes and the meds, I was just scared to death that I was going to hurt someone. Now, I don't have that worry.

I'm currently working with Hospice, taking between 5 and 10 meds trying to find a comfort level in pain management that also allows me to be functional. It seems like it's going to be either one or the other but not both at the same time.

Mom and Dad and Sis have been a terrific help, they come by for visits often. I have to watch those too, though, as they take a toll on me too.

I'm trying to learn to ask for more help. That is so very hard for me to do. I'm a "I can do it myself" kind of guy. Asking for help just bites.

Ok.. I'm pooped now. Time to take of the eye patch and see if I can get Un-sea sick.

Thursday, May 13, 2010

Wow...what a week.

I have been sooo frigging sick.
Out of the last week, I didn't hurl 2 of them.
My body is so sore.

Who needs a gym, right?

Hospice has started coming to my home. They're working on a concoction that will settle my stomach. Once we get that dialed in, we work on other issues that have been hurting/bugging/troubling me.

I'm sleeping good finally, and that's nice... I just wish I wasn't sleeping so dang long.

Getting lots of good visits from family, but I'm having hard time getting friends squeezed in. I'm just exhausted after little things that I pass out hard after a short visit. Hospice says that we'll work together to beat that too.

Gotta jet. Time for my nap.


Monday, May 3, 2010

Any landing you walk away from...

Ok... weird event last night. In the middle of a deep sleep, I came crashing down on my bed. I hit so hard that I even bounced. Freakin weird.

I went to the Relay For Life event at PV this weekend. I had no idea just how many survivors would show and how many "team" members of those survivors would show. I saw SO many friends there... I was floored. I saw Gerry, Kathi and Traci, but by the time I came around again, I missed them. Overall it was a terrific event and I'm very grateful for Team Lifetouch for getting me over there and helping me deal with so many people. I don't do crowds really well, and the Lifetouch folks really saved my tooshie.

Today is my first radiation treatment of 3. These are for pain management on my shoulder. All the materials say that I'll be fine, but they have me face down while getting zapped... with my face resting on a sheet. It's SO hard to breathe that way. I'm going to see if I can arrange from ventilation today.

Tuesday and Wednesday more radiation. I'm not sure what comes next for me.

Friday, April 30, 2010

New meeting with radiation.

Today I meet with my radiation oncologist. We're looking at blasting a sub cutaneous something or other on my right shoulder. We're looking at 4 days to blast that bump outta there and then maybe that muscle group will quit being such a pain in the butt.

Mom and I have been going out on walks for the last few days. Yesterday really kicked my butt. It's getting harder and harder to make the walks. It's getting pretty creepy.

I'm really grateful that I have so many folks helping me out.

Dad came to mow my lawn for me today. Bugs me that my dad "gets" to help me with my lawn... wasn't it supposed to be the other way around? It makes him feel good I think, and I enjoy our time together.

So... I still have to learn to let go of stuff, and I AM getting there... but boy it's tough.

Tuesday, April 27, 2010

The last few days, new happenings and bravery.

It has been a busy week or so. Last weekend the family got together to do family photos. This was mom's get together. It was really nice to get the entire immediate family together for photos. We haven't done than since I was like 10. It was nice. Julie and I also got some photos done. I'm looking forward to the proofs.

I got to spend some time with my mom. Walking together has been really terrific. It gives us a chance to just be mom and son.

Dad and mom came by for a visit. That was really great! I love hanging out with them.

Chelsea and I did lunch yesterday!

Yesterday I finally got to see my eye doctor. My right eye has been a mess. Turns out that my right eye is now extremely far sighted and that funky spot that I see in there is really there. It seems that I have a "mass" in my eye that is reshaping my eye, and thus the vision. It was really no surprise. My eye doctor and I agree that while we could run a truck load of tests, we're each quite confident that its the cancer. So, until I get the really thick lens for my right eye, I get to be a pirate. I were a patch to keep my vision single (no double vision). It helps, but I lose my depth something fierce. I've pretty much quit driving. It scares me too much now since I can't see worth a darn.

Coming up... the cruise is in about 2 or 3 weeks. Rhiannon is taking me to see Rush... a daddy daughter event. My sister's family and I are going to ice cream tonight. Rick is coming up on mom's day for a visit and we're going to try and get together. Chelsea has been meeting up with me for lunch from time to time.

I'm tired a lot. Seems like I get a day that is really good, and then 2 that I'm really tired. I'm in great spirits, just pooped out.

Now for bravery...

I had an anonymous post cheering me on for my bravery (very short form for a very nice comment). The sad thing is, I think those close to me are much braver than I am. To tell the truth, I try to keep my attitude up, but it can get scary. But for my family, it's so much harder... at least from my perspective. I mean, really, how do you spend time with a loved one without being so scared? Each visit leaves you wondering how many more you might get... how many more opportunities you get to do things, or to even say goodbye?

I'm not so brave... those who take care of me... family and friends... they're the brave ones.

Friday, April 23, 2010

The human brain on morphine...

I just made the dumbest call that I've ever made in my life. Fortunately, I was able to deal with a customer service rep that was quite understanding.

I used Bill Pay to pay Bank of America.

My online statement said that the bank paid Bank of America Online.

My crappy eyes read that the bank paid America Online.

Sheesh...

I have not felt like such a dork in a very longggg time.


Tuesday, April 20, 2010

Wouldn't the truth just be easier???

AT&T bites ass.
For that matter, so does Digital Path.
Actually, finding out you are going to die and having to deal with anything in an administrative status sucks.

So, with that in mind... I got the word I am going to kick the bucket a little sooner than I thought I would. (THIS ISN'T NEW BAD NEWS SO DON"T PANIC)

Knowing that I'd like to take care of a lot of "easy" crap, I begin taking steps to transfer accounts.

Digital Path, my current phone/internet provider is more than happy to transfer ownership of the account into Julie's name...IF she provides a credit card to auto bill each month.... all new customers must do this. REALLY??? Hmm... I write you a check each month... but not good enough for ya huh? OK... we'll go back to AT&T.

DUMB IDEA

I placed my order last week. I was promised my land line on Monday.
Monday came and went, no land line... but I do have a tech visit scheduled for Friday. WTF???
Call AT&T... cancel visit, promised land line on Tuesday.
Tuesday came and went, no land line.

Call support... after mashing about 15000 buttons, I find a human.

"Oh, they should have told you that a tech had to come out."

Really??? Why the hell didn't they just say that in the first friggin place????


GRRRR

Saturday, April 17, 2010

Wow!

New meds did the trick!

Went from sleep, pain, sleep, pain to sleep, sleep, sleep (over night) and no pain!!!

Yeah!

Friday, April 16, 2010

Oncologist today

Today we meet with the oncologist. It won't be anything super duper, mainly just a pain management meeting. I'll be getting updates to my current meds and finding out what to expect over the next few months.

I'll also be asking about how to maximize my little appetite so that I can get the most out of the little portions that I seem to be able to get down.

It's been getting harder to sleep again. I had a few good nights, but now my back is starting to give me fits. I imagine we'll be upping some doses on those meds.

So that's it for today. Going for a walk with my sister (I hope). Maybe sneak in a load of laundry.

Monday, April 12, 2010

Getting ready for the cruise...

Julie and I are going to take a cruise. It'll be a 7 day Alaskan cruise. I can't wait. My first one!

Yesterday I didn't feel really hot. Kinda shaky and tired. I almost felt like the old days when you drank yourself sober? Yuck! At any rate, I spent nearly all day in the recliner, the one with the nap monster locked up inside. Then slept all night too.

Sheesh.... way too much sleep.

Time to get some stuff done in the garage.

I'll be glad when the sun returns so I can get back to walking again.

Saturday, April 10, 2010

What your brain thinks you can do vs. what your body thinks it can do...

Man... I get so tired these days. I'm good for one or maybe two little project things and then I'm done.

Dad and I moved a recliner out of storage and into the living room. After Julie and I got it located, and plopped down in it and WHAM! Out for a couple of hours.

Then today, I'm still whooped from the activity.

I guess I just have to learn to plan better so that I don't get caught short with any of my "projects".


Wednesday, April 7, 2010

A misunderstanding/ setting the record straight...

I'm either misunderstanding an awful lot of people, or folks don't understand exactly what I'm doing...

Let me set the record straight...

I'm not falling into the seat cushions of the couch waiting for someone riding a pale horse to arrive.
That is, I'm not throwing myself a pity party. In fact, I'm doing more now than what I was doing the last 6 to 12 months waiting for an answer. I now have an answer and I'm getting along with my life, doing things that I want to do.

So please, no rescue squads. I'm not wallowing in depression. I'm ok... REALLY!

I heard the news today, oh boy....

Well, actually, I heard the new yesterday.

I met with my radiation oncologist yesterday and she shared that radiation therapy on my liver isn't going to be an option because the cancer has spread a great deal. Based on her description of the PET/CT scan, I get an image of a shotgun blast...

I have small tumors in my lungs, my back (lymph nodes), my shoulder, my neck, my stomach...etc.

My mom posed the question, "So, how much time are we looking at here?"
After asking me if I wanted to know how long, the doctor replied, "Probably less than 1 year."
We can do some radiation for pain management purposes, but not for "cure" purposes. There's just too much there.

I spent most of the day letting things sink in. I let a number of my friends and family know what's going on. One of my oncologists staff phoned me to ask how my appointment went. I was shocked! My oncologist spoke about my case with my radiation oncologist the day before. They just don't communicate well in that office at all. She was shocked from the news, just like everyone else. "What will you do now?"

My answer is simple. I will be living each day as though my ass is on fire!

I have a lot of administrative stuff to get accomplished, most of it has already been taken care of over the last year. Mainly, just loose ends to tie up and make tidy.

I also have a lot of vacation type stuff to take care of too. My girlfriend blew out all of her vacation time last year taking care of me. This year, we spend her vacation time on vacation.

I don't know how much more I'll have to add here. I'm sure I'll share symptoms and such along the way, in case someone else with CC stops by for a visit. I'll also share my "vacation" stuff too.

Monday, April 5, 2010

Waking up icky...

I really hate waking up feeling icky.

I did get some stuff knocked out today... completed my list as a matter of fact. So now I'm going to take it easy and watch a movie and pretend that the green tea is a beer.


Friday, April 2, 2010

And the numbers are in...

Blood work results are in...

CA 19-9 is 2337. Not good at all. For those of you who have been following along, 0 - 35 is normal.

Results from the PET scan should be in by Monday, so hopefully we'll know if radiation is a possibility still, or if the cancer is running wildly through my system.

I almost made one of the oncology staff cry today. I guess they get frustrated too.


Wednesday, March 31, 2010

Oh... and new meds too

Morphine makes me sleepy and I forget a lot....

So... they took me off of Vicodin for pain management and put me on time released morphine and moved to norco for "break-through" pain.

Overall a pretty wicked combo. I sleep all night and damn near all day too.

My CT scan and the new tattoos

Well... my CT scan was quite interesting. A lot different at the radiation facility than what they do at the imaging facility. Almost like it was a new thing they were learning. I'm glad it's done.

I also got my "body" mold done. That is like a bean bag pillow with itty bitty beans in it. Once they have you positioned, they use a vacuum to suck the air out of the pillow. That maintains the shape so that you're in the same position each day.

I got 3 new tat's as well. Each the size of a freckle to be used as guides for the radiation operator.

Tomorrow is a PET scan. It's supposed to be a full body scan. That's to make sure that I don't have any other buggers showing up now. It won't make much sense to do the radiation near my liver if there are other areas now showing too.

One of the staff members at my oncologist's office suggested I get my chemo prescription filled with a company in Sacramento. She said they get better buys on the meds from them. Some better buy... my cost for 84 pills... $622.00. Saved me a whole 8 bucks... whoo hoo! There is a patient assistance program that we're going to try for and see what we can come up with.

It seems that the further I travel on this little journey, the more is seems to cost.

Good news is, I've already met my yearly out of pocket expenses for my medical care, and at the rates they're charging for meds, I'll make the yearly out of pocket for pharmaceuticals in no time.

Friday, March 26, 2010

Meeting with Radiation Team

Yesterday I met with the radiation team. Terrific folks. Here's what we discussed.

First of all, we've taken me off of the Vicodin. The amount of Tylenol was too high. The recommended dosage was giving me 6 grams of Tylenol. Way too much for my liver to have to put up with. Now I'm taking time released morphine and I have Norco to handle break through pain. The Norco is pretty much the next step up in Vicodin, but much lower Tylenol. The morphine seems to do the trick so far. We're going to see how that goes, we made need to make modifications in dosage later on.

My Radiation Oncologist is going to review the latest CTs and PET scans. Based on the pain I'm having in my back, she may recommend one more PET before making a decision on proceeding with radiation. If cancer has moved to other spots besides the liver area, we may not be moving forward with this treatment plan.

If we do go forward, it will take about 7 - 8 weeks total. about 2 weeks to get everything set up and 5-6 weeks for the course of treatment.

Side effects I'll possibly see are nausea, sun burn like symptoms at the target point (maybe even blistering), and fatigue. The chemo pill I'll have to take will also have its own side effects.

While a possibility, but not likely, I may get some spine damage from the radiation.
A possibility as well is that I may get some ulcers because of the location of the tumor and it's nearness to my stomach.
And finally, a high likelihood that my right kidney will be wiped out during this activity. That leave one kidney and the likelihood of higher blood pressure to manage.

So there we go... an update.

Sunday, March 21, 2010

My first year as a survivor.

Yesterday I became another year older. 46 is good. We also celebrated 1 year of survival against cholangiocarcinoma (CC). Surviving 1 year with this is a big thing. (pictures to come soon).

Last year between 2000 and 4000 people were diagnosed with CC.
Last year between 1400 and 2800 people passed away from CC.

That means that I now officially fall into the 30% of those who actually survive the first year following diagnosis.

All things considered, it's been a good year.

I've had 2 liver biopsies.
I've had 2 "tummy cams" (EGD)
I've had 1 colonoscopy.
I've had 40% of my liver, my gall bladder, some of my bile ducts and a lymph node surgically removed.
I did chemo for 6 months.
I've had nearly half a dozen CT scans.
I've had 2 PET scans.
I've had nearly half a dozen ultrasounds on various locations of my body.

I've also been to Alcatraz.
I've been to the Winchester Mystery House.
We went riding roller-coasters at 6 Flags.
We went to Monterey to the aquarium.

I finished my little sidewalk project.
I'm almost debt free.

It's been a busy year. The next one will be just as good I hope. We have plans to go to Ireland for starters.

There are concerns for me though. The last 2 weeks have been pretty rough. I ache a lot. Sleeping through the night is nearly impossible. The couch and I are now good friends. I know more about late night/early morning TV than I care to. I get way too tired way too fast. I get anxiety attacks now. Overall, I just don't feel all too hot.

Maybe once we visit radiation, that will change.

Friday, March 19, 2010

Finally.

Radiation finally called me... now I have an appointment next week.

Or... perhaps I should say, radiation finally got my paperwork. Holy smoke... they are literally 10 steps from my oncologist. I had to pester the front desk staff at the oncologist to get the paper work moving. Hell, "blondie-cutie" doesn't work there anymore, but it's apparent that she trained her replacement.

Friggin idiots.


Thursday, March 11, 2010

'bout time I wrote something

I have folks now asking me, "When are you gonna tell us what's going on?"

I phoned my physician that performed the EGD (tummy cam) to get my results. He returned my call later in the morning and was apologetic that I hadn't been notified of my results by the surgeon. The results are in, I do indeed have cancer.

So, that headache is gone.

My surgeon phoned later on that evening and also updated me with the same news. I pressed him with a "why" can't you do something surgically. He said that my body has systemic disease at this point. He told me that the resection of my liver was like closing the barn door after the horses got out. The problem was, we needed a little time and a few more scans to show that the "horses" had gotten out. His suggestion was chemo.

Today I met with my oncologist. He has some good things in mind to try, and I'm quite excited to be doing something again.

Here's what's on the schedule:

I'll be referred to the radiation department for a consult. The idea here is to see if I'm a candidate for radiation ( no tumors in the liver). If they are close by, then we may be able to focus the radiation field to the proper area. With that radiation, we'll be doing Xeloda. The Xeloda works to strengthen the radiation.

So, if radiation is not an option, we will run a course of the Xeloda for 3 months, and then I will be taking a drug "off-label" called Tarceva.

Wow... just saw on the news Merlin Olsen passed away from cancer. Bummer.

In earlier meetings with my oncologist, we had discussed Radio Frequency Ablation. That is currently not an option because of the location of the tumors... yes... you heard right, tumors. So... if the tumors or tumor was in the liver, we could do that. But one is located close to the porta hepatis and other major veins and bile ducts that remain. Hit those with RF and poof! you're bleeding internally.

If we don't get radiation okay'd, we'll be looking at Stereo Tactic radiation while we start my chemo runs.

Ok... so now I'm doing something. I know that I am indeed a "repeat offender" and I have a plan that we're putting into action. That's good stuff.

I had "a" beer yesterday. I felt it, but it didn't bring to me my knees. That's good stuff too.

I've also canceled Cancer Treatment Centers for now. They will be staying in touch with me and we may go yet... but for now, I'm staying home.

Friday, March 5, 2010

The phone call the day after?

Oh dear lord... this just feels like a bad date...

Stanford just called back to make sure that I was doing ok... which is good.

What is bad is my brain running rampant in the gutter.... crap... did he like me so much he's going to ask me to come back for more????

No more garden hoses for me, thanks.

Things I learned during this tummy cam session...

Short form for this post: getting an EGD (tummy cam) while even mildly awake (somewhat sedated) is not fun.

Ok... here is the only warning you will receive. There will be adult content in the remainder of this post. If you are offended by adult content, I recommend coming back for future posts. This isn't XXX stuff, but there are some innuendos.

That said, here was my day yesterday and some things I learned.

Lesson 1: When your RN who is getting you prepped for your tummy cam worked at your local hospital first, don't allow him to reminisce. He will get all focused on the past, and not keep his mind on where he is, what he is doing. "You will feel a little prick here Mr. Carman... say! Do you remember Sins of Cortez?".... JAB POKE STICK!!!! Holy smoke, you are a little prick!... I mean... that was not a "little" prick. You bruised me big time ya big ox!

Lesson 2: "We will be spraying some stuff in your mouth that will taste like orange juice mixed with gas. It will prevent the gag reflex. While it tastes bad, you'll thank us for this." Hmm... I don't recall that stuff before... HEY! Wait just one minute, aren't I supposed to be out for this? "Yes. You will be mildly sedated, it makes it easier for us to direct you." So, the Cepacol on steroids did taste like orange juice and gas... and it worked... more on that next.

Lesson 3: Men have unrealistic expectations when it comes to certain activities they expect their girlfriend to participate in. "Please close your eyes Mr. Carman." Something big and slick gets jammed into my throat. "Please try to swallow Mr. Carman." Jeez Louise. I was expecting him to pinch my nose, slap my ass and pull my pony tail next.

Lesson 4: I now understand that I could not be a porn star. Please refer to lesson 3.

Lesson 5: While sedated, one tries to roll or move and feels many hands pressing down on you to prevent this. Talk about feeling like you are being gang raped!

The final lesson: My next EGD, if I ever have to do one, will be done in Paradise by Dr. K. Now he and his staff know how to do it right.

Wednesday, March 3, 2010

My last breakfast... so to speak.

I just finished the last breakfast I will eat until Friday. I can't have anything to eat or drink after midnight tonight. My procedure isn't until 12:30 PM tomorrow. Sheesh... I'm going to be one cranky man by the time they finally get me knocked out.

I met with my therapist yesterday. It went well, but was more of a "get to know you" session. As time progresses I'll be able to really tackle this blue funk I've been fighting.

My back is still thrashed, but getting better. I would really like to quit taking this vicodin. It works well, but there are other side effects that I could certainly do without.

The weight loss continues. I'm down to 198 today. I was 209 in December, 207 in January. February I kicked down to 199. I'm down a pound in the last 2 days.

Saturday, February 27, 2010

Neutral Ground

Well... there's lots of stuff coming up in the next month.

I'm going to meet with a therapist next week to discuss this "blue period" that I've been dealing with. My thoughts are that I'll be meeting a complete stranger to discuss what's going on in my life. As funny as that sounds, I'll be on neutral ground... that is... I won't feel like I have to watch each word I speak in order to not offend or hurt a friend or loved one. I have more friends ready to hear me out than I can count, but I always feel as though I have to be the tough guy. I know that's not how it is, but that's how it is... does that make sense? Welcome to my current mental state ;-)

Tummy cam is next week.

I meet with my oncologist the week after that, and hopefully with results from the endoscopic ultrasound biopsy I'll at least have information in order to again begin making decisions. Not knowing is the worst.

At the end of the month its out to Chicago to meet the Cancer Treatment Centers of America. They will at least provide me a tie breaker to the surgeon's "you're doomed" and the oncologists "we're not entirely sure". Again, knowledge is power... being able to make a freakin decision is even more power.

I've been walking my fanny off. I've been floating around 200 pounds for the last week. That's an 11 pound loss over 3 weeks time. I was getting nervous there for a while about the weight loss, but holding at 200 I can deal with.

My back is killing me. I need to make another visit to my chiropractor in the near future.


Thursday, February 25, 2010

Another "tummy cam"

Next week I am scheduled for an Endocscopic Ultrasound Biopsy. How they're going to get to the area where my newest "spot" is is beyond me, but I guess they're going to try.

I'm not getting a lot of communication from Stanford other than staff members calling to schedule the procedure. I haven't even met the doctor that's going to perform the procedure.

I think my relationship with Stanford may be drawing to a close soon.

I've had a cold for nearly a week. My back is still thrashed. I've had a case of the blahs for about 3 days now. My family physician is having trouble getting documents completed for me in a timely manner. I can't even drink a beer without it hurting... literally.

*sigh*

Maybe I'll just go eat some worms?

Friday, February 19, 2010

Green??

I'm not so sure about the green template that I've selected. I think I'll leave it up for a bit, but it is a bit too much for me.

We will be going to Cancer Treatment Centers of America, Illinois, in late March. We'll be flying out the day before our appointments begin. So far I know that our first day will be spent getting to know the facility and staff, getting registered and getting the rest of our appointments scheduled for the week.

CTCA paid for our round trip airline tickets. They also made arrangements for us to room at a local "big name" motel for a terrific rate. We get a limo ride from O'Hare to the motel. Shuttle service will be provided each day to the facility and back. We also get meal vouchers for our meals each day.

I paid off another credit card this morning! That leaves one more and my student loan and then I"m officially debt free. It took me just over 5 years to get this one paid off. It's been a longgggg time coming.

Wednesday, February 17, 2010

What a week!

Man... this week has been loaded with activity.

I met with my oncologist this week. He's going to have the pathologist that reviewed my most recent biopsy to rewrite the report so that it reflects correct information. Basically, if something tests positive for "neoplasm" (cancer), then it cannot be "negative" for cancer.

You ever feel like your life was a washing machine on spin cycle and you were the single towel in the load making the machine go thump thump thump as it wildly roamed around the laundry room floor?

The oncologist is also going to email the surgeon to find out why he cannot/will not go in to remove the most recent "negative" spot located and biopsied near my liver. He is also going to look into two other forms of therapy.

One is stereo tactic radiation. (Please note, I more than likely have this term incorrect). This allows pin-point radiation to a specific spot. This is done at either UC Davis or UC San Francisco. He will be emailing two colleges to confirm and make arrangements for this to possibly happen.

The other is radio frequency ablation. (Thanks Anjie!). This is pretty much the same deal, but uses radio frequency instead of radiation.

The surgeon phoned yesterday and he has a colleague at Stanford who is willing to do a endoscopic ultrasound biopsy. In English: a throat cam with an ultrasound device attached. Whoo hoo!

Cancer Treatment Centers of America has been working with me and it looks like we'll be going to Chicago in late March to meet with their staff. My local oncologist supports this decision to get another opinion and options, but he did say that this "for profit" organization will do "wallet biopsies". That is, they may run tests that may or may not be necessary in order to create bill-able items. I guess they have to pay for the plane ticket they are providing us somehow.

I've been volunteering at the local "not for profit". That has been VERY satisfying. I'm still in "job shadow" mode and that has been going so well. It's nice to get out of the house, and the hours are just right.

I made a $300 error on my Federal taxes. I get more on my refund! Holy smoke! That never happens.

I paid off another credit card this morning! That was a terrific feeling.

I having breakfast with my dad on Friday. It'll be nice to spend a t little father/son time with him.

Wednesday, February 10, 2010

You must be this tall to ride this roller coaster....

Ok, it's just about 4 AM. I've been up since 3. It's taken me nearly a week to digest my last visit to the surgeon to be able to actually write something about it. Hopefully, getting it down in words will get me to a point that I can actually sleep an entire night, or perhaps even sleep an entire night in my bed. Some nights I have to go try the couch because my back hurts or my head hurts or my stomach hurts.

Stress sucks!

We went to Stanford to see my surgeon as directed by my oncologist. We went taking with us great news about the negative results that had been obtained on my last liver biopsy. After a few meaningless words between the three of us, the surgeon stated his verdict. "You have cancer and there's nothing I can do surgically to extend your life. Don't get me wrong, I like to cut, it's what I do for a living, but there's nothing I can do for you."

Huh?! My biopsy came back negative, doesn't that mean something? His answer was, "none of the samples were diagnostic." Well... let me tell you... the first 2 were not diagnostic but the third one was. The third sample taken was reviewed by a number of doctors and was determined to be negative. But the surgeon had determined that based on my high marker and my last CT scan that I have cancer... no ifs ands or buts.

While I trust my surgeon with my life and truly think that he is a master in his craft... I think I'll stick with my oncologist and multiple reviewers of the "spot" discovered in my CT scan that was biopsied to be negative. Hopefully, going with the majority will at least help me keep my attitude right.

I made a phone call to Cancer Centers of America. I'll be working with them a bit soon, perhaps even flying out to there place in Arizona for a third opinion. We're working on that now.

I'm tired. Mentally, I'm beat. Physically, I hurt. Emotionally, I'm a wreck inside.

Today calls for sun and warm weather. I'm going to go to the park and find a spot near the creek with some sun, some water running over the rocks and try to empty my brain.

Wednesday, February 3, 2010

The biopsy and what my mom didn't say...

Ok... first the good news. My biopsy came back negative. We're still going to Stanford for a second opinion (they'll probably tell me I'm ugly too)...

While mom and I were getting me prepped up for the biopsy, the RN taking down then information about me asked what my big ass scar was all about. I shared with her the liver resection.

What mom was thinking and didn't say, and I'm terribly glad she didn't...

"He had his head stuck so far up his ass they had to cut a window for him to see where he was going."

That's one for Bill Engvall, Here's Your Sign!

Saturday, January 30, 2010

The biopsy.

This time my biopsy went MUCH better than the last one.

The staff in the pre-op area was terrific (most the same as last year). However, darling I.V. Student needs a little more practice to build her confidence. Poor thing! It took her like 5 minutes to select a vein in my hand to work with, she was so careful and delicate, she had the IV in... and pushed again! POOF! The vein went flat! She was a mess when they sent her to the next victim. She got a really good vein on the next victim... it was like splattering all over the place.

I got wheeled over to radiology and most of that staff were folks that I saw last year.

The doctor performing the procedure was very open to questions and very sympathetic to my anxiety over my last experience. He talked me through how it would go this time, and it sounded like it would be at least tolerable.

My RN juiced me up with the "good stuff" and we began. A local was poked into my belly, right below the tip of the breast bone. Not between the ribs this time. And it felt like a bee sting. Then we got started. A little pressure as the guide needle was inserted, and that was it! WOW!!! After two pushes and two pictures to check placement, we went for the third push, that one caught my attention. The doc stopped pushing, got me another hit of pain killer and we went again.

It took three attempts to get a good sample for the pathologist, so between each sample, the RN and I chatted it up. She was great!

Finally, we got a sample, but post-op was filled up. So I got to wait in the CT room and everyone came in from time to time to chat a bit.

Then I got wheeled to post-op and got some water and some graham crackers. Man! I didn't think graham crackers to taste so freakin good.

So, the nice thing about this visit is that ...even though I ache a bit, my morning yesterday was not spent with me screaming, "Oh My God!", "Holy Smoke!" or making comments about my staff's questionable ancestry... or a doctor telling me, "I'm sorry Mr. Carman, I know it hurts." We went in, we knocked it out, and I came home.

That's the way it should be done!

Wednesday, January 27, 2010

A long winded update.

Here's what got covered at the most recent appointment with the oncologist.

Basically, we're doing the biopsy to determine IF the spot the surgeon pointed out on the CT is indeed cancer. If it is cancer, then, is it the same cancer or a different one.

The oncologist indicates that any wide variety of things could cause the CA 19-9 to climb like it has been. He indicates that there is a 10% + or - margin of error on both a PET scan and a CT scan. He indicates a PET scan can show a false negative, but it CAN show cancer. He indicates that a CT can show a false positive for an image of something being on another something that may or may not be cancer, but a CT CANNOT be cancer positive.

With all of that in mind, the oncologist reiterated that the PET scan was negative for cancer as determined by the radiologist. He indicates that the radiologist is top notch in his field with a number of years analyzing PET/CT scans. He (the oncologist) is confident that the PET scan is negative (keeping in mind the 10% plus or minus).

The oncologist indicates that a number of things can cause a CT to throw an image off, or produce inaccurate images. One example he gave was the metal sutures that are still in my liver. He described that the sutures can cause a scatter effect of the radiation during the CT scan and might provide a false image in the area of the surgery, in this case the porta hepatis.

SO, after all of that, we go with the biopsy to determine for sure that this is indeed cancer, determine that it's not scar tissue, a spot of blood, a benign piece of junk just hanging out... that kind of stuff.

My best guess here is that the surgeon may not have even looked at my PET scan disk that I took and perhaps made an educated diagnosis based on my climbing CA 19-9 and the possible something near my liver and in my lower left lung from the most recent CT scan.

Now... about the lung stuff. In multiple CT scans throughout this "journey", these spots have appeared. In each case, they were interpreted as "calcified" things. The oncologist indicates that something can either be calcified, or they can be cancerous... however, something that is calcified cannot be cancerous. Ok... good for the lung issue.

Now, where do I go if I pull up a positive on the biopsy?

The oncologist indicates that cancer cannot be "cured" by chemo. That surgerical removal is the only way to have a chance to beat it. He indicates that chemo will kill cancer cells, but not cancer. To illustrate his point, he made a number of dots on our note paper with his pen, and also drew some odd shaped circles. Now, he demonstrated with "X" marks that the dots could be a cell, and that chemo would kill that cell, but not the circles. So the dots can be killed with chemo, the circles have to be removed.

Ok... whew this is long....

The next flavor of chemo, IF we decide to go that route, will be Cisplatin. A really nifty cocktail that causes life long side effects. Some of those are nerve damage, kidney damage, electrolyte disorders, nausea and anorexia.

As it stands now, until we get results from the biopsy, we are not going to do chemo. The oncologist's stand on that is he won't do something just to be doing something, especially noting the side effects of cisplatin.

Radiation is not an option. This is because the liver is not a strong as cancer and radiation would destroy the healthy liver before the cancer.

So, I was directed by the oncologist to begin looking for a surgeon who will do a re-resection. However, he indicates that it will be tough to find a surgeon who will do this because of the location. (another nifty picture detailing why).

I've set up an appointment with my surgeon again to get a consult on the re-resection. If he doesn't with to chance it, then the concologist does know one surgeon in Los Angeles who may be interested in giving it a go. As I understand it, this surgeon is a liver specialist like my surgeon at Stanfordr.

If we can't find any surgeon who is willing to risk this surgery, then we will begin looking into clinical trials.

So, there you have it!

Friday, January 22, 2010

I"m sick of lemonade...

When life gives you lemons...


RIGHT!!!!!


Thursday, January 21, 2010

Oh great!

More fouled up news on the cancer front.

My CA 19-9 marker is now at 519.
Normal is between 0 and 35.
I was only at 350 something back in March before they sliced me open.

*sigh*

Gonna be a long night while I try to sleep tonight.

Wednesday, January 20, 2010

Finally! Some information.

Stanford phoned me this morning. My RN there apologized for being so delayed in returning my call. My thought was, "hmm... you were off yesterday, you've been back to work for 5 minutes and that's slow?"

The call went very nicely, and she gave me the following information.

Since we (I) have 2 new spots on my left lung, AND since they are down low on the lung, AND since that portion of the lung touches the liver from time to time, AND that area that it touches is near the cut section, they want to confirm from the porta hepatis biopsy that it is the same cancer and not a new one. This was a surprise to me because what I've read is that once you've been diagnosed with one cancer... it's your's for the duration regardless of where it pops up next.

No biopsy on the lung, because that isn't practical. Hmm... but getting a flag pole jammed between your ribs is? Perhaps I need to be grateful they're doing the liver biopsy and not the lung?

The final part of the call was an apology from the RN that no one told me what the devil was going on. In her words, when two physicians speak and come to an agreement on detection methods or treatment, the physician making the arrangements (my Chico oncologist) would be the party to notify the patient.

I'm still not happy with this new fella, and I will be letting him know on my Monday appointment. The hard part will be to let him know in a manner that is more of a critique rather than a personal attack. But I'm so freakin good at the personal attack... I can do it without even trying ;-)

Tuesday, January 19, 2010

Where oh where did I leave my red Star Trek shirt???

Well... more freakin good news. Not only did my local oncologist miss the diagnosis from the PET scan (surgeon at Stanford says that the two items on my lung were PET positive) but now I have to go through another biopsy.

This biopsy is a CT Guided, Fine Needle Aspiration of the Porta Hepatis. The English version of this medical techno-babble is "A Flag Pole Jammed Between Two Ribs to Suck a chunk of your body into a small jar". The target, porta hepatis, is the area where one of my lymph nodes used to be. Right close to the liver. Actually from pictures I've seen, right against the liver.

The last time I did this, it was quite possibly the greatest amount of pain I have ever experienced. This time when the RN asks if I want something for the pain, my response is going to be , "You bet your ass! All of it! Give me everything!" There's got to be a way they can do this with me asleep. I'm going to find out for sure.

I guess you can tell that I'm not getting much sleep again. Being in limbo really sucks. I don't have any information and my new oncologist seems to me to be throwing shit at the wall to see what sticks. Frankly, why the biopsy? Don't we already know that I have cancer? Sheesh. My belly is a mess, my brain is a mess, I'm a mess.

I think I'm going to look around and see if I can get into another oncologist who is more "on board" with what's going on... someone with a little more interest in what's going on with me and what's going on with my treatment.

Saturday, January 16, 2010

Well Shit!

Well guess what? Our little trip to Stanford was ended with shitty news. First indicators are that the cancer is back. My elevated CA 19-9 marker plus the results of this last CT scan show that I have two small images in my left lung (each smaller than a pea) and one in the area near my liver where they removed the lymph node in the last surgery.

My surgeon is in contact with the tumor board, specifically a Doctor (Sue)... I've already forgotten her last name. They are going to discuss "what's next" for me and make recommendations to my new doctor here in town.

Surgery isn't an option in this case, because though he could easily scoop out the current offending little shits, it won't take care of others that will come up in the future.

Since the Gemzar didn't appear to work, I guess we'll be looking at other wonderful flavors of toxicity. Great! Just Great!

I'm physically up to another round of force fed toxic drink mixes... but I just don't know if my mind is up to it. I'm going to have to reach really deep to find the balls to go on with this... and I will... but my heart just isn't into it right now.

I dropped the CDs with my scans on them to my doctor and hopefully his office will call in the coming week to discuss my next battle plan.

Part of me is scared out of my wits, the other part of me is just in shock.

Now ... where did I leave my cool red Star Trek top?

Thursday, January 14, 2010

First trip to Stanford this year.

We're heading out to Stanford this afternoon. Do a CT scan tomorrow morning and follow up with the surgeon, Dr. Vissar, mid-morning.

I'm feeling really good physically. I've started watching what I eat a lot more closely. It's my opinion that when you need 3 strong men and a "come along" to button the top fly of your jeans, you've let it go too far. I started tracking my calorie intake as well as my physical activity. I even started a "beginner" running program. But I'm finding that my knees, at near 50, don't care much for the pounding. So I'm going to have to find another method of burning the calories.

Hopefully, tomorrow, we'll get out of the Stanford clinics soon enough to stop by Jelly Belly and see a pair of dear friends. Its been WAY too long and I miss them.

I'll post how the trip goes maybe tomorrow evening.

Saturday, January 9, 2010

One month out from chemo.

Yesterday was my first month out from chemo. Good things are going on. It seems the fog is lifting from my mind the longer I'm away from chemo. I'm thinking better... a little better.

No jury duty for Monday! Yay!

Stanford for a CT and and a follow up with the surgeon on Friday.

That's about it.

Oh yeah... the Star Trek Exhibit photo...





Sunday, January 3, 2010

Time won't give me time...

Thought I'd better drop in and write something. It has been a while.

I've been away from chemo now for 3 weeks. I seem to be working the effects out of my system. Daylight, for example, doesn't hurt my skin when I go out into it anymore. I'm not as tired. I'm able to sleep past 3 am.

I think my brain is beginning to work properly again, to some degree. I think it's recharging... I keep having the most vivid nightmares. Well, maybe not nightmares, but bad dreams. And such detail too. While I was on chemo, not many at all.

The hard thing I'm dealing with right now is the concept of time. I can't seem to grasp that... it's like three weeks just go by in a blur... and I can't recall things that have have happened or things that I've said... drives me bonkers!

Folks say it'll take 6 months to 2 years to get it all back. I'm a little on the greedy side... I want it now! ;-)