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.

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.

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.

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.

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.

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.

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

Wow!

New meds did the trick!

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

Yeah!

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.

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.

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".

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.

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.

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.

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.

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.

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.

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.