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.