San Jose day

Today Julie and I visited the Winchester Mystery House. We took the "whole she bang" tour. Very cool, very freaky and pretty cold. That place was some kind of drafty. Very cool visit.

Later, The Tech Museum and the Star Trek Exhibition.

Um....

AWESOME!

I have a photo of me in the "big chair" that I'll share later as well as a shot of me in the transporter. The displays rate a 4 out of 5. There were a lot of costumes from the various shows and movies as well as some props and recreated props. I read in Via Magazine from AAA that the bridge set was from the series, though I'm not to sure about that. Overall the tour was nice, but I liked the Mystery House better.

Tomorrow, Monterey!

Merry Chrsitmas!

I don't "get" to do chemo today! In fact, I'm done! Whoo hoo!

Last night was Christmas festivities at my parents house. Freakin awesome just to be there. My sister and her family trip me out with the terrific gifts they find. Being a big Star Trek freak, my sister always finds the neatest stuff. My sister's boyfriend was there too as well as his son. His daughter arrived with his granddaughter as a surprise. That was so cool! His granddaughter was a treasure!

Today, I actually slept in until 7! That's a skill I'd like to learn, sleeping past 4.

Today we're going to Julie's Uncle's home to spend some Christmas time with them.

Then, a few days experiencing, "first star to the right and straight on until morning". We're just going to go and have some "Stan doesn't have cancer" and "Julie would like to get away" time. It's going to be a blast.

The red shirt...

Lately it seems that if I were guest staring in a Star Trek episode, I would be the fella wearing the red shirt.

Today, however, I was treated to a very nice surprise. I had to run to the Post Office to mail off some Christmas goodies. I got there just before the door opened. About 30 people had the same idea I did, get there early. I was a little nervous thinking, "this is going to take forever." With only three clerks working the counter, I was certain my fears would be realized.

12 minutes later, I'm out the door. My transaction, as well as the 20 or so folks in front of me, was complete!

Fabulous!

Things I want to learn and do.

I want to learn to focus on one thing at a time. Doing three at a time is not only impossible at this point, but it never was very productive.

I want to learn to breathe when I get frustrated.

I want to find out why every contractor I deal with is incompetent. Yesterday's fiasco was a discussion with my mail order pharmacy about why they seem to continue to deliver my maintenance meds to my home I lived in 3 moves ago. The first young woman was quite nice, but couldn't help me. She sent me to a "resolution agent" who was equally unable to help me. "We have to pull the conversation to confirm that you did indeed tell an agent your new address. If we determine that you have indeed notified the agent, we will call you within 24 to 48 hours to arrange for a new shipment to the correct address?"

Now I'm insulted. Three times I have phoned and corrected the address because I've caught the error on the company's web site prior to shipment. You now tell me that you have to confirm that I said that? Really? Mighty fine. We are done doing business. I'll go to my local Safeway now. Sure, I'll pay triple for my meds, but I'm betting that they won't ship them to the wrong address and that I can pick them up on my schedule, not 7 to 10 business days.

I want to give something back! I'm working on becoming a volunteer.

I want to lose 10 pounds and never find them again.

Todays goals:

Continue with the turkey jerky project.

Make stock.

Make a terrific dinner.

Help Julie begin the Christmas cooking. (This is were the breathe part will come in handy. Today I'm the grunt, just follow the instructions)

Pretty easy day!

Chemo brain and power outages!

Okie Dokie!

The lights just dimmed, then got really bright, dimmed again... and poof. It's dark.

Shortly thereafter the lights came back on and I'm like, "Crap! All the clocks are flashing 12:00."

I hope that I can figure the darned things out. I had fits setting clocks before chemo!

A side note on Sissy Sushi...

Once the chemo burns out of my system, I can do real sushi. You can't have real sushi while on chemo because your immune system is taking a pounding and adding the potential risk of raw fish is frowned upon.

Yesterday was just cool 'cause I felt like I was being a bit of a rebel.

Sissy Sushi! And AT&T bites ass.

Today I had Sissy Sushi.

That is, I went to Safeway and bought a cheapo plastic box filled with a California Roll that included "no raw fish". The rice was sweet, the wasabi was glorious, and I can still operate chop sticks.

I made a dental appointment! Yeah!

I gave an AT&T rep a hard time. BIG hard time. "Did we provide you with excellent service today Mr. Carman?" My reply using my best patient voice (you who know me know this voice well) "Absolutely NOT!" Her reply was, "well thank you for calling AT.... WHAT?!?!? you got bad service?"

Lookie here sister...

It took me 25 minutes on wait (not hold) to get to Wayne. That is AFTER I spoke to your stupid menu system... "Ok... let me see if I heard you right."

Wayne lacked the skill sets or authority to answer my question, "How much longer on my DSL commitment?"

Wayne forwarded me to DSL Tech Support.

Nearly immediately, I got Chris.

Chris was made to look like an idiot by AT&T. He gets to read the script, but cannot answer my question, " How much longer on my DSL commitment?"

I get to wait on hold for 10 more minutes before I get Myra who barely speaks Engrish and is ready to "provide me with excellent customer serveece."

I finally get my answer and she asks me if I got "great customer service"

UH OH!!! Here comes Mr. Hyde!

NO! ABSOLUTELY NOT!

Lookie here AT&T...

While my puny little local phone line, my DSL and my petty little 5 cell phone accounts will not be missed by you when I leave... and I'm sure that just under 300 buckeroos a month will not be missed by you...

I shall not miss your piss poor attempt at customer service.

By the way... the company I went to for my cell phone service had a human that picked up on the first ring.

The company I am choosing for my phone and internet gave me 2 choices when I phoned and a human picked up on the second ring.

Put that in your pipe and smoke it!

... and the wisdom to know the difference.

I so wish that I had the skill sets necessary to practice that little saying. There are things in my life, or things that are around me that I just don't get to control. That bugs me big time! It is so very hard for me to keep my mouth shut at times and let those in control take care of things.

So, I have a little disruption going on in my life and it is truly stupid that I let my blood pressure get all up in a froth over it. I can't share a lot of details, but I vow to not let it take me over. Somehow, I'll get "the wisdom to know the difference".

Changed up the blog color template this morning. Blue wasn't working for me. Yay! Something I can control!

Again, this morning, I'm reminded that chemo and checkbooks do not mix. There are times I feel like a dumb ass when I see how badly my checkbook register is kept up. I mean, it's not like I'm not trying... it's almost hit or miss though. The good thing is, all my chemo buddies say that I'll start getting my "marbles" back between six months and two years.

Today I plan on tackling my daughter's bathroom. That is one place that makes me shudder... other than her bedroom, and I'm frightened to go in there. I would need my GPS, a good terrain map and a compass to find my way back out.

Speaking of my daughter's cave, I was completely impressed yesterday. For a moment, I thought the dish and the spoon had indeed run off together... and bred! My kitchen sink was full of a variety of plates, saucers, bowls, silverware, glasses and cups. I think someone needs to have "the talk" with the dish and the spoon. I'll wager that the ants leave the cave now... no food laying around in half empty dishes anymore... well... for now anyway.

Good news!

Ok... the short version:

While the CA 19-9 marker is climbing, my PET/CT scan is clear. VERY clear. So, we watch over the coming months/years and see what's going on. That's great news!

Now the longer version:

I went in for my last chemo visit. I was a bundle of nerves. I was shaking and emotionally a mess. I warned my RN that my blood pressure would be up because I was expecting bad news form the doc. It was up! 150/97.

The doc arrived and we discussed my numbers. He indicated that anything could bring that marker up like a change in meds or even an infection. Later, after thinking it over, it's probably this gnarly rash I have on my hands from the Gemzar.

Finished with the doc, and went home to crash and shiver.

I'm feeling a lot better now that the scans came back clear.

Now I get to wait a while and do the following:

Visit the dentist! Once this round of chemo is cleared I can have my teeth cleaned.

Use a toothpick!

Shave with a razor routinely.

Sushi!

Being able to remember again!

Then! Make it to my first birthday following diagnoses and treatments.

Last chemo day

Ok... I just want today to be over. I go in for chemo in 1.5 hours. While I'm getting pumped up with the lost dose (better be)... I'll also be meeting with Doc Hayward to discuss this weeks PET/CT scan.

There's a lingering feeling of dread that I just can't shake. Maybe he'll have good news?

I'll post more this afternoon after I shake off some of the initial chemo crap.

Yesterdays PET scan

I just love working with a sensitive, competent staff. Yesterdays PET scan went very well. And they actually did a combo CT and PET scan.

I picked up my copy of the disk for Stanford and took a gander. Well, I see hot spots in the slices, but actually my understanding of what I see is probably a lot like ancient man's interpretation of the stars. "That one looks like an archer. Ooo that one looks like a lobster." That kind of stuff. So, while the images look pretty slick, I'm going to leave the analysis to the pro. We'll see what Doc Hayward says on Friday.

Yesterday I ran into a fellow combatant. She and I spent a great deal of time chatting. It was nice to speak with someone who "knows". That's not to imply that others aren't concerned or don't understand, but someone with a common bond really has some awesome insight to offer from daily survival to the care and feeding of loved ones who just want to help.

Today I get to do lunch with my sister. I'm really looking forward to that. She's my bestest bud in the whole world.

The difference between a PET scan and a CT scan.

Hiya gang,

A lot of folks I run into have been asking me the difference between a PET scan and a CT scan. I have both coming up.

The PET scan is next week. PET is Positron Emission Tomography. What happens is I report to the imaging center, they give me one of those hot ass-less evening gowns and they take me a dark, quiet room. No, not for that silly! My RN comes in with a little lead toolbox. Inside the lead box is a little vial of a gamma isotope. I get injected with this isotope and I get to sit very quietly and try not to even think for like 15 - 20 minutes. The isotope will lodge into active cells, in my case, cancer cells eat up the isotope like candy. Then they put me into the big donut and scan my body. The images that are created will show any new cancer that may be growing in my body. Likely, since my markers are climbing again.

In January, we do another CT scan at Stanford. We go to Stanford because they have higher resolution scanners than what's available in Chico.

CT is x-ray computed tomography. In this procedure, I drink a pineapple-barium smoothy the night before, and another cup of the same stuff in the morning. They take me to the scanning room and hook me up to an IV. Then they drag out this wicked looking arm that would fit right in a Star Wars movie and hook me up. They inject 300 cc's of iodine into me...all at once. I get the taste of a penny in my mouth and then heat runs through from my arm, into my shoulder and clear down to my toes... really fast... really hot... really weird. Then they take the scans.

At some point, my surgeon at Stanford will compare the disk from the PET scan that I bring (that the Chico imaging center does NOT charge me for). Later, my oncologist will compare the two disks (one that Chico does NOT charge me for and Stanford charges over 200 bucks for). Hopefully we'll find out what's growing in me so that we can get it out of there.

So, now we're all caught up.

Next week

PET scan in Chico next week and a follow-up with the Oncologist on chemo day.

Man, I feel so out of control right now. Waiting bites.

To quote Han Solo...

"I got a bad feeling about this"

Yeah... that pretty much sums the day up.

I went in to find out what my CA19-9 marker was. For those following along, I went from 13 to 16 to 16 to 50 something now to 93. Normal is 0 to 35.

Crap!

We now have "cause for concern". I'll be going in for a PET scan locally as well as the CT scan at Stanford in January. The last scan in October was clean, as far as my surgeon at Stanford was concerned. Now though, markers keep climbing up.

*sigh*

I'm back into wait mode, and that is not good at all.

And then there was one...maybe.

Turkey day was a blast! I"m so glad it came the day before chemo. Terrific food, wonderful family and some intense silliness reigned supreme over the day. It was awesome.

Chemo day went alright. Julie was able to go with me this time. Boy! I sure know how to show a girl a good time! Nearly 4 hours of boredom watching me go from great attitude to sniveling baby. Whoo hoo.

My RN's, bless their hearts, were trying to figure out what cycle I'm on. It turned out to be a nasty math game. Not knowing if I was to get chemo, or if I will have had enough when my next appointment hits. They finally had to call my oncologist because the orders weren't specific enough. Good news was, he was on call. The bad news is, he wasn't returning his calls. Hmm... that seems odd to me, you're on duty and you can be reached? When he finally did call, his cell phone was breaking up (bet he went home to the Bay Area). All of the RN's on staff each waited their turn to ask their questions.

Finally, got m y meds and was able to get the heck out of there. I am so glad I have only one more left.

However, if I get extended past December I'm going to cry. I grow weary of people poking me. I'm tired of getting ill every other Friday. I'm ready to be normal again, at least as much as I can.

Kitty Keemo

Hah!

The evil twins got their shots yesterday. I compared it to "kitty keemo".

Tuffy had it so bad, her eyes were both looking the same direction. She was having fits finding the litter box without her eyes crossed. I guess when you've lived your life like most drunks, seeing more than one potty spot, finally seeing just one (with straight eyes) was just a trip for her.

Today was terrific!

Lunch with Cindy was a god send. Getting to see my old friends at the school was pretty cool too.

Got to grab a quick beer with Rick before I had to jet for a meeting with Social Security. That was great too, but someday I have to slow my life down enough to be able to spend time with Rick when he's able to slow his down enough. Juggling life events is tough on us "old farts".

The afternoon thinking

Ok...

So after an afternoon of thinking, being pissed, being spooked and being pissed again... I've finally got myself thinking straight and settled down.

Nothing I can do right now to change anything. The marker number is what it is for now.

I'm going to phone in and get my PA to request bloodwork ASAP so that I can sleep properly. Until then, I'll just do my best to not worry.

Coming up:

Lunch on Friday with a high school classmate, former co-worker, and friend but most importantly, a survivor! That will be a nice get together for me.

Lunch on Monday with a former high school classmate and one of my bestest buds! Sister of a "combatant"! Another great opportunity for me.

Sometime between now and turkey day a get together with another high school classmate and another of my bestest buds!

A weekend trip out of town...well... doing some shopping in the Bay Area and get to catch up with Julie's family. That will be so nice! I'll also get to show off my Buddha belly zipper!!! They haven't seen it yet. :-)

Son of a ....

Well... I'll leave out the rest of the statement about questionable ancestry.

I just got back from an appointment with my oncologist. My most recent CA19-9 is 52... or 56.... either way.. freaking high since the normal high end is 35.

Doc says a lot of things could kick that number up, even (gasp) a mistake. So, I went 13, 16,16 and 52. We're going to watch the marker, they check at the next chemo visit. Doc also indicated that my last CT scan was perfect, so the high marker is likely not anything to worry about right now.

Right! I feel like the fighter in a cage match who was holding his own and then suddenly finds himself answering, "Friday" when asked "Do you know where you are?" after being put to sleep with a rear naked choke hold.

This will be a long wait until the next blood work.

Chemo and checking accounts do not mix.

So, after 3 months of not getting any bank statements for my new account, I finally visited local bank and got it squared away. I finally got my back statements and began reconciling my check book.

Holy smoke! Nerd boy couldn't handle getting everything entered for the last two months. I had some items entered into my register, some entered into my computer, and some that I hadn't entered in either.

I'm not really sure if it's chemo, or I've just allowed myself to over complicate things. One thing is certain, I really need to be more careful with my "data entry".

Oh! What a kink in the neck!

Yesterday I operated a shovel for the first time since my surgery. I think I tweaked something big time. I can't bend my neck! I visited my chiropractor for the first time in 6 months, and she was tripping out! She was really checking out my hot Buddha belly ;-)

She made me go "snap,crackle and pop" and I'm feeling much better now.

Chemo sucked.

I got my rash back on my thighs, neck and hands. It'll go away in a few days if it's anything like last time.

My attitude is better today.

Starting to get my filing under control! Yeah!

And then there were two...

Two left to go. For that I'm very grateful.

The staff at the infusion center are pretty terrific folks. The RN who was working on me yesterday spent a lot of time talking with me and helping me to understand the crap I'm going through right now. We think we have a plan that will help with the "ickys" for the next month. The "ickys" and the blues too. Come Monday, if I'm still blue in the gills, we'll be taking steps to "elevate" my mood.

So far this morning, I don't feel too horrible. Not great, but not horrible.

I got laid off on yesterday. That's good news. Being back to work while on chemo was a lot more than I had bargained for. It'll be nice to have the break while I finish up the chemo and get my head screwed back on.

Chemo day today.

Today, if my numbers are ok, I "get" to do chemo.

After today, two left.

*sigh*

This is getting so hard.

Dang it

Today I stayed home again.

I'm as blue as can be.

I barked at my oldest, who is now pissed 'cause she didn't have it coming and I was not getting it at all and gave it to her anyway. Dumb ass!

I left the freakin pan on the burner... AGAIN! Thank goodness I was right in the living room.

"Gee, what's that smell?"

"Dang it! Not again!"

Tomorrow has got to be better than this.

Brain spins...

Today I left work early. My little bit of gray matter just started over thinking everything and I went into a tail spin.

It's really amazing how fast you can go from "perfectly good mood" to completely emotionally overwhelmed. This is all taking it's toll on me and I'll be glad when it's over.

The really cool thing... one of the evil twins must have known I was feeling blue... she climbed up in my lap and made me pay attention to her....

OH! It's not because I'm blue? Darned demanding cat ;-)

Tuesday and why I feel sorry for parents.

Yesterday was quite rough. I'm tired as hell and I think I must be fighting something more than chemo. The oncologist indicates that all is well though. I can go in for a visit if issues persist any longer. Oncologist suggested Benadryl cream for my little rash to stop the itch.

Now, why I feel sorry for parents. I woke at 4:15. I let the evil ones out of the office to feed them. Before I could read a note from my daughter letting me know she went to her mom's house, my door bell rings. WTF? At 4:30AM? I peak out the window of the door, and there's a young man there. You know when you get the idea that opening the door for some guy that looks maybe 18 or 19 at 4:30 may be a bad idea?

Well, I opened the door. Turns out the kid was lost and wanted to call his mom. I retrieved my phone and let him make his call. "Mom, I'm cold and it's late, can you pick me up?" Sheesh... late? Dude, it's 4:30... us humans call that early!

I ended up having to speak to his mom so that she could find out where her son was. I let her know a great place, well lit, to pick him up and gave him directions.

I'm really lucky that my kids have their crap together.

OH! The funny thing was, "Dude! Did you have surgery?", he asked marveling at my "zipper" running the length of my hot Buddha belly. I replied, "Nah. I have liver cancer." He went pale. That was funny.

On his way out he asked, "Do you smoke weed, dude?".

No was my answer, my thought was... that's why you're lost dimwit!

Monday stunk!

I spent yesterday at home feeling icky. I got a Jim-Dandy of a rash on my legs and tummy. I'm going back to work today, but I'm still feeling like... um... blah/yuck/itchy.

I'm going to call my oncologist's office today, but they're probably just going to tell me to pop some Benedryl.

Finally... my cats are evil and they have no clue that the time changed. 2:30 is WAY to early to be getting up.

Ouch!

Chemo this week kicked my butt. I thought I was going to hurl right there in the infusion center. I got home and tried to remain in good spirits, but wow.. I was feeling WAY icky!

Yesterday was better, but my legs and forearms were cramping like crazy. Then, in the afternoon, I felt like my acid reflux had come back with a vengeance. I guess I should have skipped the dill pickle with a ginger ale chaser.

This morning, reflux is still kicking me in the butt. That bugs me a lot :-(

On the downhill side.

I met with my oncologist's staff the other day. He was out on a consult. Basically, Stanford won't provide my information to him because I haven't given them his name. HIPPA is a pain.

Blood work is still looking good. My CA199 is still at 16. Normal is 0 to 35.

Met with my family physician too. I haven't seen him since March. It was nice to catch up and get started with a "normal" routine again.

Work is slowing down a lot. I haven't lost my cool :-)

Chemo tomorrow. With the new week on week off schedule, it looks like I have just 4 more to go. For that I am very grateful.

Other than that, life is just kicking right along.

Facing a day...

There are days that I just wake up and say, "grrr".

Yesterday was one of those days.

I woke up tired and pissed for no apparent reason.

Went to work and got really frustrated with a co-worker.

I mean really, why can't everyone have a work ethic?

Though I can't really be that way, I wonder what would happen if I followed the accepted example?

Today, I'm facing a new day.

My belly hurts from spinach, I think. It's the only new food I've added to my current munching list.

I don't want to do anything but hide today.

So, I'll be going in and hiding at work trying not to lose my cool like I'm so well known for.

Oh! One good thing from yesterday.

I did the math.

My hourly wage from insurance benefits is about $106.25. Granted, I'm spending all 17,000+ a month in chemo, but it was kind of fun to put a dollar figure to the benefit package.

Chemo just kicks my butt.

Man, the first few days after chemo are just wicked!

Yesterday, I was tired before the day really got started. I managed to get two loads of laundry done and a quick visit to a shop in the mall before I had to come home and fall onto the couch. I didn't sleep, but turned on the tv and just glazed over.

This morning, I woke up to my right leg being numb and my left arm too. Mr. Smarty, though, sat up first, THEN attempted to stand up. The last time chemo numbed me out I walked like 1/2 a step before I fell. Not this time.

Four more treatments to go...

Chemo day yesterday, no "skip a turn" card tossed at me.

I finally got to do a chemo day. My little white blood cells went from 14000 two weeks ago to 45000 yesterday. Looks like I whooped the cold's butt.

After chemo, I came home and swapped out the keyboard on the laptop (recall the evil kittens?). I am a Dell Certified System Expert and I'm certified to work on this brand of laptop. This was the first time I've ever cracked the case on a laptop in my life. Between chemo brain and the fear that I would ruin the laptop, I was a nervous wreck. I had a nifty set of picture instructions and the caper went without a hitch. Whew! My daughter still loves me ;-).

Oh! Yesterday I got to sit in a new chair! Apparently someone read my blog and decided to get a few new funky recliners. I shared with my mom that I sat in the new chair... she asked if it was made of gold. Funny question! While not made of gold, it was upholstered with gold colored cloth. Fitting huh?

This morning I've been up about 3 hours. I helped Julie make her lunch and I went through a few old files. I'm still looking for that title to my car. Chemo has me pooped out big time. It's just amazing how toxic this stuff is.

Best count at this point is 4 more left until December 11, my target end date. They've modified my schedule again to 1 week on, 1 week off. I'll be glad when I am off forever.

Somebody help me to understand.

Ok... so I'm moving off of COBRA back to my employer's health plan. It's the same coverage, I just am no longer paying as much for the coverage since I am again "gainfully" (right) employed. For another reason not related to this post, I needed to log into my insurance provider's web site to verify that I still will be covered during the brief transition. I managed to get the web site to work long enough for me to pull up an EOB (explanation of benefits).

Now I have no wish for ANY government agency to tell me what coverage I shall have. I have no wish for any president of any party to tell me how good I can have it. I do, however, think there must be some way to regulate costs.

I know... big wish... I want big brother to leave me alone, but I want big brother to watch over me.

I looked over my EOB, and wondered why so many folks blame big insurance for the medical crisis we have. Perhaps some smart person can explain the following to me...

In August, I visited the Infusion Center of my local "not for profit" hospital three times.

I was treated twice to a cocktail of the nastiest tasting shit you can imagine.

Once I was dealt the "skip a turn" card.

My insurance carrier was asked to pay for the following items.

3 blood tests... 3 CBC and 1 CA-199. Payment asked for by " not for profit ", $69.00

2 treatments of Zofran and Gemzar. Payment asked for by " not for profit ", $1166.00

3 times sitting in the funky looking recliner to have my work done. Payment asked for by " not for profit ", $16083.95.

Total requested by "not for profit" $17,318.95.

In all fairness, I should mention that the "sitting" fee includes (based on my best guess) the following:

Being barely greeted by a receptionist at the infusion center. She doesn't even open the window at the counter or mention my name, just a nod of her head.

Being escorted by an RN from the waiting area to be weighed.

Being weighed by the RN.

Being escorted to my "funky chair".

Having a catheter put in by RN.

Blood drawn from catheter by RN.

Blood taken by RN to lab.

Blood checked in lab (separate bill here folks).

Results picked up from fax by RN.

Stats taken by RN (BP and temp).

Pump first IV into me (Zofran).

Pump second IV into me (Gemzar).

Whip out catheter.

Bandage me up.

Send me to receptionist who barely has time to set my appointment.

Walk out fancy door at the front.

Total time spent 1.5 to 3 hours.

I am guessing that they probably have some form of malpractice insurance to cover the work of the RN.

17,000 dollars for that?

Can someone tell me what I'm missing here? My best guess is I've paid for all the furniture in the center twice. I've probably paid the wages for the RN working on me at least 6 times. That leaves about 10 grand for the one month. (I've been at this for 3 now). Am I helping with the new remodel too?

Just one final note at the end of this rant...

I am SO grateful that I have my own insurance to help me with this. While insurance companies gamble that you won't get sick and you gamble that you will... I DID... so I'm freaking lucky again.

I wonder how long I have until my max life benefit hits... at this rate it won't be long.

Perhaps I need to ask to just stand during my treatments? Maybe I can get a discounted rate for not sitting in that expensive chair? I mean ... common... I ask $20 an hour to fix a computer and people call me a criminal. They ask $1925.00 per hour and my insurance company just sends a check???

I almost cried...

I've been trying like mad to find the title to one of my cars. Over the last few days, I've been going through every single file folder I have trying to find out if I mis-filed it.

This morning, I started looking for my op report. Oh No! It's not anywhere to be found. I thought I must have shredded it with other trash.

I was miffed and about to cry.

Finally, in desperation, I looked in a file folder in my filing cabinet.

Whew! I had put it away.

Darned thing is, I don't recall putting it away!

Darned chemo brain.

Feeling lucky?

Yesterday and the day before was a series of, "Man! Am I lucky or what?"

I made my first solo trip to Palo Alto. I felt like I was losing my mind without my co-pilot with me. Chemo brain only added to mild levels of panic at each interchange. "Oh my god, I'm gonna get lost for sure!" ran frequently in my mind. I only missed one turn, and that was in Redwood City. Quick U-Turn and I was back on track. (I missed that turn every time, even with a co-pilot). That was a long 4 hour drive, and I feel lucky that I made it.

My room was ready for me. It was a terrific room in a great spot on the strip. I felt lucky to have it knowing the horrible motel about 2 miles up that I've stayed in before.

I got to my CT scan location a little early. I felt lucky I didn't get lost.

The CT folks called me in about 5 minutes late. I felt lucky. Sometimes Stanford runs a little behind schedule.

Later, while waiting to meet my surgeon, one of the staff members came by to offer water or coffee to "guests" who were waiting. When asked when her appointment was, one guest replied with a time that was over an hour ago. "Sheesh! Gonna be a long day.", I thought to myself. I actually got called in only 40 minutes late. This is by far the fastest I've ever been called in. Lucky again!

The surgeon tells me that I need to lay off the Big Macs (my liver has some fatty spots building up in it). Other than that, I'm in terrific shape. That's great news! Lucky again.

Ok... now the real kicker. I should have bought a lotto ticket on June 4th.

My local family physician and my oncologists have been waiting for the Op Report that never seemed to arrive. While meeting with my surgeon, I asked for a copy that I could hand carry to my practitioners here. Never EVER read your op report. You find out that your surgeon is a lot like an Army recruiter. They don't lie, but you don't always get the whole story.

For example:

I was told following my surgery that I was given 2 units of blood because I bled a little more than they anticipated. The entire story comes from the op report...

Much to my shock, the left hepatic vein slipped out of the vascular clamp. It turned out that this was not a vascular clamp but a vascular instrument which was used as a passer; therefore, there were no teeth inside, but it is looking exactly like a normal vascular clamp. Therefore, I was left with a large hole in the left suprahepatic vena cava. I was able to close this with a 4-0 Prolene but not before I had lost more than a liter of blood in just a few minutes.

... however, it was a frightening few minutes of the case.

Holy crap! I'll bet that surgeons butt puckered up BIG time when my veins were doing a water-wiggle impression. Imagine the student's learning opportunity while I laid there squirting all over the place.

Lucky? You're damned right! Reading the report REALLY makes me look at things even more differently than I had only a week ago.

My week off.

It's been a pretty uneventful week. I have a bit of a cold that is looking like its going to linger on.

I met my new oncologist the other day. Not a bad fella. I'm looking forward to establishing a good relationship with him. He seems a bit more attentive than my former doctor. I felt bad for him when he brought out my blank "patient history" form... his first experience with the high level of incompetence from "blondie cutie". I bet he doesn't stand for that for very long.

I leave this afternoon for Stanford. I get my CT early tomorrow morning, then a follow up with my surgeon. Back home after a day of fun and frivolity in the waiting rooms. ;-)

My life in an Uno game...

Jeez... like for me right now is a bad hand of Uno. I keep getting the "skip a turn" card.

This time it appears that the little on-set of a cold that I've been fighting has knocked my white blood cells down below my cut-off point. Actually, one component of my white blood cells, NE, was down to 1400. The cut off is 1500. My RN this week called the NE component the "baby white cells".

So my goal the next two weeks is to watch the crowds, wash my hands frequently and NOT get any sicker. I don't feel badly now, just the typical, "Oh crap, I'm catching a cold" feeling.

Next week I return to Stanford for another CT scan and a surgical follow up. I also have to remember to get a copy of the OP report for both my family physician and my new oncologist. Out of all the reports that have been taken on me, this one is the only one that never made it this far.

The first Monday at work after a Chemo Friday.

Oh my god! I really missed the mark when I thought how I would handle working while on chemo. This is no easy task at all. I was dragging all day at work. Got home and could barely function. Woke up on the living room floor around 8 to take myself to bed.

I hope after week two it will be better, but I'm not hopeful.

Chemo brain sucks, Shrimp Etoufe rocks and Coach dances divinely.

Ok... so I can't spell really well...

Chemo brain bites. While shopping today, I ran into a number of old friends from my school district job... couldn't come up with a name to save my butt.

Made Shrimp Etoufee tonight. LOVED IT!!! It came out perfectly!

Coach danced with me in a dream last night.... I was at the Army motor pool with my dad. I don't know why he was there. Coach grabbed me up and whisked me around the blacktop. I woke up and thought, " Now that was just weird!"

Ok... so much for my weird day. :-)

Being frustrated with life's speed bumps.

I am so tired of this chemo crap. I'm over the hump now, but I am SO ready to be done.

This week at work went well. I managed not to hurt myself or any of the equipment. That's a good thing.

Medical professionals are leaving a sour taste in my mouth. I'm sure you may recall my last venting on incompetent boobs who work in these offices.

I am NOT good at spontaneity. I like to have a nice nifty schedule to follow.

Last week my PAC phoned me to get me to get my blood work done a day early so that I could see my former oncologist before he left for his new practice in Seattle. I was a bit miffed (my schedule was thrown off) but I went on in and got it done. My platelets were way down, so we canceled my treatment (another ding in my schedule). I met with the oncologist (an unscheduled appointment) and we changed my schedule from 3 on 1 off to 2 on 1 off.

That brings me to this week.

Oncologist receptionist (blondie cutie that uses post-it notes as a project management program) phones to confirm my appointment for Wednesday. Sorry toots! You're a freaking month off. Chemo brain or not, I KNOW my schedule! I didn't even bother to return her call.

Thursday the infusion center phones me, "Where are you? You've missed your appointment!" Ok... PAC thought I was doing Thursday infusions... no big deal. We rescheduled for yesterday (Friday).

Friday, I show up, and my RN cannot do anything with me because PAC sent no orders. *sigh* PAC runs around trying to get it squared away. Old oncologist is in Seattle, he can't sign. New oncologist is out, likely trying to get his new life in town organized. Finally, she gets the Doc across the hall to sign my orders. This finally gets me into a chair an hour late. *sigh* THEN the orders aren't even complete. No Zofran on the order. Great... I almost had to get all pukie while getting my Gemzar. Fortunately, the RN got it all together for me. My 90 minute appointment was nearly 3.5 hours.

I wished people would quit changin my life around! Don't do me any favors, stick to a schedule!

Grrr

What's happenin...

New blue color for the blog. It was time to change it up.

Work is going well. It's a lot of voodoo and scotch tape making it all work, as well as a little tug here, move this a smidgen there. But... it is a job and my insurance payment will drop significantly. I guess in time I'll get it all figured out. I'm with a great team and they help me out a lot.

I'm tired. Part of it, I'm sure, is the chemo. The other part is, I haven't had to do anything physical in about 15 years. Sitting on my butt, working on computers has not prepared me for standing up all day and being on the move. In time, that will improve as well.

I do not miss working in an I.T. shop. This new position is so busy, you flat out run and the day flies by. I like not having time to stare at the clock all the time.

Another skip week.

Well, my number plummeted again. Platelettes were down to 88 from last night's blood work. So, I got to miss today. We've modified my schedule. I now go 2 weeks on, 1 week off.

Work is a trip, a lot harder than I thought. My 6 month vacation has made me fat and sassy. So, I need to build back up. A good rest this weekend, and I'll be good to go for another week of fun and frivolity.

Pizza tonight! Yeah!

Back to the coal mine.

Today I went back to work. I like my new position, and so far, things are going well. I am pooped though.

I met with my oncologist on Tuesday. This was my last visit with him before he moves on to other opportunities out of state. I'll meet my new oncologist during my next appointment.

I may get set to 2 on 1 off for my treatments, mainly because my numbers are getting SO hammered. I still will follow a 6 month course, just a different schedule. That works fine for me!

That's all for now. More in the next few days.

8 down, 10 to go!

Over the course of the last week, I thought about attitude and how things were going.

I tried to keep a positive attitude this week, much more positive than in the prior week. Attitude and ginger ale along with ginger snap cookies seemed to help a great deal.

Last week, my week was filled with activity. That was good. It seemed my phone rang off the hook. Some of the memorable calls:

"Dad, I was rear ended... what do I do now?"

"Dad my bike had a blow out, can you send sister?"

"Dad, I lost my key ring somewhere... can you make copies."

My week went ok compared to my kids. Last week, if it weren't for bad luck, Rhiannon would have no luck at all.

Yesterday's visit went well, but my numbers took a pummling. Platelettes are way down this time. Hemoglobin was way down. White blood cells were down hard. I hope I don't have to skip again next week. My oncologist did say that we might go to 2 weeks on and 2 weeks off. I guess that will be ok.

On to survice another few days of fealing icky!

Over the hump month!

Tomorrow starts "over the hump month". After the next three weeks worth of glorious chemo, I'll be on the downhill side of things. I'm looking forward to completion.

Fun events during the last 21 days I've had off. (I had to skip a week, then my normal skip week makes 21 days) :

I can't remember shit. I cannot tell you how many times I've walked away from the stove, leaving it on! DOH! Not good! Thank goodness I do it when others are around.

I was a rebel and shaved with shaving cream and a razor! OOOO!

I am losing SO much hair on my body. My head seems to be safe so far but my back, chest, feet. Holy smoke... I look like I'm 15 again!!! Well... not counting the "budda belly". Ah.. to be 115 lbs again, with a lot of hair to boot!

I can't remember shit. I cannot tell you how many times I've walked away from the stove, leaving it on! DOH! Not good! Thank goodness I do it when others are around. OH Wait!!! I already said that. Never mind.

Season 1 of ER has more liver, cancer and hurting baby story lines than I wish to count.

Both of my kids started at Chico State this year. Yeah!!! That rocks!

I can't remember shit. I cannot tell you how many times I've walked away from the stove... crap... do I have chemo brain, or am I just getting old?????

That's enough fun for now. More to follow later!

Little victories and little losses.

Overall, it's been a pretty great week. Lots of good things happening, a few yucky things:

Good: We got a hammock! I've always wanted one and it's freakin great!

Bad: One of the cats ran off.

Bad: Finding out that you aren't 15 anymore is not a good thing to find out when you literally fall on your ass jumping off the back fence while looking for your cat that ran off.

Good: The cat came back after a "night out".

Good: My girlfriend said, "It wasn't your fault" when the cat split, and she meant it.

Bad: My computer took a shit.

Good: I can still muster enough mental horse power to actually rebuild it.

Bad: I have WAY too many usernames and passwords.

Good: I got to spend a few hours working with my dad on a little sidewalk project.

Good: Got to talk with my friend Dr. Macsalka. I haven't spoken with her for a long time.

Bad: I felt like I was struggling to get the words from my brain to my mouth. It just wasn't coming out right.

Good: I like Windows.

Bad: Could they make just one freaking update? These updates are bloated BIG time.

Good: I like World of Warcraft.

Bad: Could they make just one freaking update? These updates are bloated BIG time.

That's 6 good things, 6 bad things. Hey! I'm pretty balanced! Now if I could just balance out my mood swings :-)

Skip a day.

Today would have been my 3rd week in my 2nd cycle.

However, my platelette count was down to 94. 100 is my cut-off point.

SO

No chemo for me, I get to skip a week.

Yeah!

Yesterday's chemo and onconolgist visit.

Cool stuff first! The image on the left is from my CT scan in July. See the sparklies on the edge of my liver? little white X's? Those are my sutures inside!!! Freakin cool huh? This image was cut from a screen capture of my CT scan that was provided to me on a cd. Very awesome stuff. God! I'm such a nerd.

Yesterday went pretty ok. I still feel yucky from the chemo, but that just means it's doing it's job.

I met with my oncologist yesterday. My CA199 marker that started at over 300 when this whole trip began, had dropped to something like 27 on my last visit with him. Now it's at 13!!!! Freaking great news. He also discussed other options I can look at if this chemo is making me cry uncle. Options that will draw out the time of treatment, though I'll still only have 18 treatments total. It's my hope that I can tough it out and stay on schedule. I will be done in mid December... I'd rather not be sick during the holidays.

So, 5 down, 13 to go.

For me, chemo is like...

Ok... think back to the last time that you drank WAY too much of your favorite alcohol. For the sake of argument, we'll use rum as an example. Remember how the smell of rum made you feel like you had to hurl for years after you over did it?

That is what chemo is like for me for about three days. Sure, they give me meds to take that ease this mild crap, but it's just a pain in the rear. That icky feeling right below your jaw line... that same spot the mustard hits sometimes when you make a sandwich and your salivary glans go nuts.

4 down, 14 to go.

Chemo Day!

Whoo hoo!

Today is chemo day. The first in month two. Just four more months to go after this month.

I'm really tired of being poked with sharp objects.

They call me... Patches!

I've been really lucky with side effects on this chemo trip. But a funny one, I guess, has been hair loss.

I haven't started losing any on my dome yet, at least as far as I can tell. It was already starting to get a bit shiny top side any way. But my shoulders now have smooth spots. I haven't had smooth spots since I was a kid. It's really pretty funny looking, patches here and there. If my head starts going out in patches, I'm going to shave it.

I am feeling better. I'm still tender in the tummy from my spill. Now I just take it real easy when I get up. I feel like Thomas Covenant in the Chronicles of Thomas Covenant the Unbeliever. He was always taking inventory of his health and welfare. Though I'm not a leper like he was in one reality, I do take inventory BEFORE I stand up from bed. Have to make sure those legs are wide awake and ready to face the task at hand.

I get tomorrow off from chemo, and for that I'm really grateful.

Wow... week three

Week three on this cycle has been a tough one. I spent yesterday sleeping and shivering. Never had a fever, but couldn't seem to stay warm most of the day. Standing up stinks, my hemoglobin levels must be bottomed out. I have to take everything very gingerly.

Night before last's fall wasn't too good for me. I think in either the fall itself or the effort to get my butt back up I pulled a stomach muscle. With the zipper down my belly, that's a little unnerving. I feel a lot better today, so I think I just strained my muscle group there, but it sure is tender.

I hope today shows some improvement in the way I feel. I'm always pretty good in the morning, but I seem to get worse as the day progresses.

3 down, 15 to go

Man, this one whooped me. Queasy and tired for two days. :-(

Now I have 13 days off until the next round, so that will give me a bit to recover. All of my numbers for my CBC improved except my platelets, they were down to 107. No more running with scissors for me.

Last night, on a side note, I found out what really old folks feel like when they fall. I awoke in the middle of the night and got up to use the rest room. Although I didn't know it at the time, my right leg was asleep (so was I still at that point). My right big toe caught the carpet. My leg apparently didn't pull up high enough when I took my step. I tried desperately to regain my footing, but 1 second later, I was on the floor holding my foot and then trying to get up. My still asleep leg was going to hear nothing about getting me up and bearing weight. My toe was wide awake, screaming at me like it had a hang-over or something. My girlfriend thought she heard the cats, saw that I was missing from the bed and looked down on the floor to find me whining about my toe and apologizing for waking her. Jeez!

This morning, I have the beginnings of a purple toe. Dang it, right along the base of my nail. I hope I don't lose it. It's a pretty color of purple though.

Dread

I am SO not looking forward to today. Today is treatment 3 of 16.

The nice thing is, I am looking at my skipped week a little differently. I was looking at the entire program as 3 weeks on one week off. It is actually more like 3 Thursdays, and then 1 Thursday off. My dad pointed out that I will get like 14 days off from chemo just by missing one Thursday.

So, I just need to tough today out and then I get 14 days away. That will leave me 15 treatments to go, just 5 months.

2 down, 16 to go

Wow! Yesterday's chemo visit kicked my butt. I didn't get sick or anything, but man... I was wiped out. I could hardly keep my eyes open all evening, and was just a vegetable on the couch.

So far I'm having only mild side effects from the Gemzar. I get really tired really easy, the sun cooks me in a hurry and my brain is a bit on the foggy side. Overall, no real big deal.

What really floored me was the result of yesterdays blood work. They have to do a CBC (complete blood count) at each visit. They check three things. My WBC ( I think this is white blood count), my Hgb/Hct (these are red blood cell numbers) and PLT (platelettes). The change in the numbers was mind bogglling considering how well I feel (so far).

Week one numbers: WBC - 6.8/ANC 4.6, HGB./HCT - 12.8/38.0, and PLT 203.
Week two numbers: WBC - 4.1/2.0, HGB./HCT - 12.2/35.4, and PLT 145.

That's a trip! Seeing the PLT count drop so fast makes me understand why I'm supposed to be VERY careful with sharp knives, shave with an electric razor and wear shoes all the time. I could really bleed a lot if I'm not on the ball.

Follow Up with Oncologist

Today was a pretty terrific day for me.

Before the surgery, my marker count for CA199, my cancer, was at 317.
After surgery, my marker count is at 28!
Normal range is from 0 to 35.
This is very good news!
Dr. Keech says that the ongoing blood work is a really good way to keep an eye on this in between the more detailed visits back at Stanford.

I'm stoked!

Tomorrow is day 2 for chemo!

Super Sniffer 2.0

I wonder if this is another side effect? After my stay at Stanford, I came back with a heightened sense of smell. Everything smelled so strong, so nasty.

Now it's back and driving me nuts.

Wowie

One of the side effects that the staff told me about with the Gemzar is fatigue. They weren't kidding! About 12:30 yesterday, I zonked out and slept for like an hour. I never nap, it usually just makes me cranky. But yesterday, I just couldn't help myself. I woke up and noticed I had slept for an hour and made myself get up.

I was falling asleep on the couch by 7:30 last night. I gave up at 8 and went to bed. I only woke up once in the middle of the night.

So far, no other side effects, but they are starting.

1 down 17 to go

Chemo went pretty well yesterday. It was a long afternoon though I had expected to only be there 30 minutes. My oncologist had indicated 30 minutes, but on the best days it will be 90. Adding all of the "training" for my first day, it made my first visit nearly four hours.

The staff at the infusion center was terrific, and so were the other guests. There were a lot of people getting a variety of treatments. Everyone seemed to be pretty happy and jovial. It was a nice first day.

Man! Talk about a number of restrictions. I have so many things I have to watch for as I go through the next six months. I have to avoid groups, have to watch for all kinds of infections and illness. I need to shop when the stores are slow so I don't get exposed to sick people. I need to avoid kids who have recently been vaccinated for chicken pox and polio types of vaccinations. I even have to watch for bleeding. Had to switch from razor blades to an electric razor to prevent nicks.

It's going to be a long 6 months.

Today I go for another CT scan to set a baseline view of my new liver. It should nearly be done regenerating by now (yesterday was 5 weeks after surgery).

As things go on with the chemo, and as I get side effects, I'll keep posting. I'm interested to see what side effects I'll be experiencing. So far, nothing! That works for me.

Why are we SO tolerant?

Why is it that we as paying customers tolerate increasing levels of incompetence????


What fired me up is the 25 minutes I spent punching numbers and telling the fruitcake voice from ATT my telephone number over and over again. Yes this is broke, No this isn't broke...


Friggin machine took me SO long to report that my voice line was down.


GOOD NEWS! They will call me in 48 hours to arrange repair! Are you friggin kidding me?!


Incompetence is rampant, and we continue to tolerate it! Why?

2 days for a MAJOR phone carrier to call me back about my broken phone service?
Office Admin staff at doctors offices running the operation from post it notes?
Check out clerks that don't know the difference between Bok Choy and wheat tortillas?
Leaders who know they hired a computer tech, but haven't got a clue why?



I'm up to here with this bull-loney!


And to think, I was just telling a friend last night on the phone that it's all small stuff... maybe that's the problem... we've allowed it to all be small stuff and are content to pay outrageous monthly payments to be screwed with less than adequate customer service. It's crap I tell ya! Crap!

Getting ready for my first chemo.

Nothing much has been going on this last week. I can sneeze without feeling like I'm going to drop to my knees in agony. Today I mowed my own yard for the first time in 5 weeks. That was fun! Well... sort of!

Chemo is on Thursday. I'll be ready to get that under way just so I know what to expect.

The Cheemo Consult.

Today I met with my oncologist. We are going to proceed with chemotherapy.

He was pretty impressed with how well I've recovered so far! I rock!

SO... now to the nitty gritty.

The bile duct was the originator of the tumor on my liver. They took that all out with the portion of liver and the gall bladder as well as the lymph node.

The chemo that I will be taking is GEMZAR (gemcitabine). It's a 30 minute infusion through IV once a week. That happens for 3 weeks and then I get a week off. During this time, we'll be monitoring platelet levels and white blood cell counts. If I get too out of whack, then I take that week off and do the next one. This will go on for 6 months.

No guarantee on hair loss... but overall this drug offers pretty mild side effects.

In addition, I'll be going back to Stanford every 3 months for blood work and CT scans. That goes on for about a year (though my oncologist indicated that the CTs would go on for 5 years, but decreasing in frequency). If I make 5 years without any other signs, the we mark me as done!

Surgical Follow Up

I'm back from the follow up at Stanford. It was a great meeting with my surgeon and others.

Things were running behind schedule, so we were about an hour and a half late getting in. We got to spend some time with some folks who used to live in Chico, but retired to cooler climates.

Once we got in, Dr. Chen (one of the residents) came in. He shared some good news about the liver... I think what he said was that no further tumors were found on the material that they removed from me. Then he said, "now... let's take a look at your incision". THEN he poked me right down the line top to bottom. Poke, poke, poke. I was thinking..."Oh my god! I'm gonna poop my pants!" But, it didn't even hurt, and Dr. Chen seemed quite pleased. I'm not sure if he was pleased that I didn't poop my pants or squeal like me friend who hates spiders or if he was pleased at my recovery. At any rate, we were told to wait for Dr. Vissar.

Dr. Vissar came in, and I jumped up off the table to shake his hand. We spoke a bit, and then I asked questions like, "When is it REALLY safe to drive? When can I vacuum? Can I ride a bike?" He gave me a look and said, "You make liver surgery look easy. I should have you share your recovery with other patients as most of them don't do this well."

I was told that all of my activities could be resumed IF my body said it was ok. BUT I wasn't going to hurt anything.

Then the beer!

Yessiree Bob! I can have a beer now and then. YES! Fat Tire never tasted SO good!

Cheemo appointment on Monday!

No new news to report...

Well, there just hasn't been much happening. I'm spending a lot of time "getting better" after the surgery. That pretty much means that I'm hanging out at the house bored out of my skull.

I go back to Stanford on Friday for a follow up with my surgeon. I'm going to ask what steps I can take to hasten recovery of this cut, but I have a funny feeling that I'll be told, "Patience young man." That will bite.

I'm also going to ask how long until I can have a beer. When we met for the consult, I was told, "in time you'll be able to enjoy beer again." The "in time" part is what I'm curious about. How long is "in time"?

That's about it. More when I have something to share.

2 weeks after surgery.

Well, here were are, 2 weeks and 2 days following surgery.

I've come to the conclusion that healing generates a lot of heat. I don't have a fever, but boy do I get warm... REALLY warm... when I'm sleeping.

Staples are out, and while it feels better to have the metal out of my belly, things are still really tender.

I also have my driving privileges back, but now after my doctor told me what (who) to watch our for, I'm still scared to get out there. One little accident (they happen all the time) and POP! I'm splattered all over the window. I think I'll skip it unless I really, really need to get out for something.

The hard part now is allowing myself time to heal. From what I've read and been told by my surgeon, it's going to be 5 to 6 months before this cut is healed...well... the cut and all the internal stuff too. I feel like Veruca Salt... "I WANT IT NOW!"

Just a post...

Staples come out tomorrow! Yeah!


I miss driving privileges. There is an incredible amount of independance lost by losing your wheels.


Back to Stanford next Friday with a follow up with my surgeon.


Cheemo discussion appointment the week after that.


Lots of walking, increased activity this week. I'm making good progress!

My first good night sleep in a while...

Finally! I got a good night sleep. Last night was my first full night without any pain meds. Here's why...


I had the most horrible dreams on the Oxicodone (sp?). My belly was killing me even if I took the stuff. I finally worked out some "plumbing issues" related to the oxicodone but was still hurting like crazy. Finally, day before yesterday, at 3 AM, I said forget this! These aren't working, I'm not taking them anymore.


Yesterday, my first day off meds, was freakin awesome! I didn't hurt, I went and dit a little shopping trip (I rode, Julie drove and lifted the bags etc). We went to the movie rental store and picked up Gran Tarino. (Great flick!). I also knocked out two little loads of laundry and cooked dinner.


Last night I managed to get five hours of sleep at one sitting (rather than the 10 minutes I was getting at best on the meds). Then I toook an hour break from sleep to stretch out the shoulders a bit (unrelated or maybe stress related tension) then went back to sleep for like four more hours.

I woke up tired, but rested ... if that is at all possible.

This morning I was reminded that it's still very hard to shave. The cut they made was right down the center of my tummy, and now it's still a bit tricky to lower my upper torso to get my face wet.


And for a bit of humor, a memory from Standford...

RN: "It's time to take out your epideral Mr. Carman."
Pretty Drugged Up Me: "Duhhh.... ok"
RN: "First we have to remove the tape, slow or fast?"


Note: My back used to be quite hairy. I had no idea they used what felt like duct tape. I had no idea HOW much tape they used.


Pretty Drugged Up Me: "Go slow, I'm not sure I can take it fast."
RN: OK Mr. Carman, here we go.


RRRRRIIIIIIPPPPP, tear, rrrriiippp, yipe, rrrriiiiippp, tear.


RN: "Ok Mr. Carman, all done. You did great! No charge for the waxing! "


Though painful, it was funny that my RN had a sense of humour. Great guy! I wish I could have had hime the entire time.

7 days after surgery.

Well.. sorry for the long delay. I've been a bit "under the weather.


The very short version is, they took about 40% of my liver, my gall bladder and a "suspect" lymph node. One of the resident surgeons who did not believe that I weighed 218 was quite "amazed" at the amount of fat I had crammed in there. Gee... I'm not sure I know how to take that ;-)


Overall care at Stanford was pretty good, but I did get the roommate from hell. On the second night of him turning the lights on and off, the tv on and off, and running the nursing staff crazy because "I lost my medicine" (Dork... It's the magic green button they pinned to your jammies... just like they told you 50 times the first night) I finally walked my ass out to the nurse and said, you either move me to another room or I'm walking home to Chico. I think he took me seriously, because I was moved into a two person room, with no roommate the first night.


I'm tired, and drugged up. They gave me this pain killer that gives you the dreams from hell. My god! I was on a bus, a rabbit was driving it... but I couldn't see his face unless I got onto bus number 103.... sheesh... then Charlie Tuna was trying to kill me one night. That stunk.


So now I'm home. I can barely focus on anything for long. I walk twice a day... a generous amount. I would guess maybe 1/2 mile each time. I cannot drive. Cannot lift anything over 5 pounds.

The last two days I've spent sleeping for the most part. Sleeping and working on getting real food working in my system again.

The really wacko thing... smells! It is like my sniffer went into hyperdrive. So much stuff smells like crap... just reall rotten.

OK. I gotta go take my nap (I'm tired of thinking).

The big day! #2

Well, yesterday after sitting in the waiting area in the hot looking evening gown, I was notified that I had been bumped to today.

The woman before me did not have a good time in her procedure and some emergency surgeries came up (my dad figured they were the helicopters that came in).

Today I report at 11 for surgery at 1. My surgeon says it will take a bus roll over to bump me one more time.

Yesterday was hard. Waiting is rough, your brain can spin up some kind of big yarns while you're stuck there.

The big day!

Today's the big day. Report at 8:40, procedure begins at 10:40. Three to five hours later, I will be waking up and looking forward to recovery fun and games!

Man, I'll be glad when this is over.

Well rested after getting home.

Man! It felt so good to be back in my own bed last night! I slept like a baby.

So...here we go with the "action" stuff.

Wednesday I go in for a left hepatectomy. What that means is they're going to take about 40% of my liver out. Some weight loss plan huh? The surgery will take about three to five hours to complete with about three to four hours recovery time. I may or may not end up in the I.C.U. following the surgery. That all depends on how well things go. Dr. Visser, my surgeon, feels confident that everything will go quite nicely. He did, however, point out that "things" can happen while they are in there. Stanford takes a very conservative approach to care and recovery, airing on the side of caution. So, if I wake up and hear the bells and whistles of I.C.U., I don't need to freak out.

I'll be spending five to seven days in the hospital. I get my first day off after surgery. Thursday, the real fun starts as I begin attempting to move from my bed to my chair. Friday might bring walks down the hall and even maybe some food!

I'm making light of this, but it's going to be a really hard haul this time. This is major stuff, but I'm confident that I have what it takes mentally and physically to make a rapid and good recovery.

After I return home, I will have home recovery of about five to six weeks during which time my liver will begin to regenerate. The liver will not take on it's old familiar shape, but will "poof" out returning to the same volume it was prior to the surgery.

Every three months or so, I will return for another CT scan to make sure I don't have more cancer again. That will continue until the folks at Stanford get sick of seeing me ;-). Then I'll be marked as a "free man" so to speak.

The hospital is both cell phone and computer friendly. So, I'll be able to post while I'm there to tell you how much fun I'm having!

CT yesterday - Surgeon Today

Yesterday I had to do a new CT scan to check on tumor growth. More blood work as well.

Today, we meet with the surgeon.

I'm pooped. It's been a long week and I"m ready to head home.

Just for kicks, while killing time waiting for our appointment time, we took up driving in San Fransisco and finally found our way to the "Rock". Neat tour!

Slept like a baby last night! No loud neighbors.. girl-friend did good!

Yesterday at Stanford

Yesterday Julie and I met Dr. Fisher. After a brief check-in with the front desk (should I mention they had their act together?), we were led to quite possibly the warmest exam room I have ever visited.


Briefly, Dr. Fisher shared with us a number of options and scenarios. But he seemed to indicate the based on my good health, the early detection and the location of the tumor, that removal by surgery is a likely course of action.

He said that the surgeon had already looked at my CT scan and pet scan. The surgeon indicated that if no great amount of tumor growth has happened, then we will move on it.


Today's events:
A fresh CT scan to confirm that the tumor hasn't grown too much and more bloodwork. Then, maybe back to Chico or perhaps an appointment with another doctor on Friday. If we don't get an appointment tomorrow, we get to come back next week.


NOTE: Girlfriend picks motels from here on out. I finally gave up at 4am and threw a Carman "fit" at the neighbor who seemed to think that shouting a conversation with his wife all night long was ok. We never have this problem when Julie picks the rooms.

At Redwood City

We made it to Redwood City yesterday, though before the morning had passed, I was beginning to wonder.

I phoned the staff to make arrangements to pick up the files, slides and cd's that were going to be ready on Friday. (Couldn't pick them up Friday because the office left for an early long weekend). No answer, or a busy signal... I guess that was understandable after the 3 day weekend.

I drove over to the office, and requested the files. The office worker was surprised that I was going a day in advance (even though the worker was sitting right there when the doctor suggested I do just that. She checked to see if someone else had already copied the files. The files had not been copied. So, I offered to return 2 hours later to give the worker time to complete the task. THEN she reached into her desk, rifled through a stack of Post-It notes, found the one with my name and the instructions for my files and went to work.


Just a suggestion: Post-It notes are for helping you remember. They are not a project management system, and they probably aren't much help if they are in a stack in your drawer. a stack! About the size of a pack of cigarettes. Sheesh.


I return, and one of the two copies I was promised was ready. That's ok... I have a copying machine. I asked if the slides from the biopsies where there. The worker just glazed over! Oh my god! This cannot be happening to me! Office mate, also glazed over, got on the phone. 20 minutes later, I'm directed to pick up the slides myself across town.


This office must be one of the rings in Dante's inferno. I'm quite positive I am paying for past transgressions.


Sheesh! Today is going to be better! Stanford can't be that bad.

Moving right along!

I go to Stanford Cancer Center early next week. It'll be an all day event to meet with a specialist who who take the history, slides and CDs with my scan results and add to that a history he will start with a question and answer period as well as a brief examination.


That doctor will release us for a while the team meets to discuss my options for liver treatment as well as confirm the suggested chemo course of action for the pancreas.


Now... just gotta get those files from the oncologist!

The best night sleep in a long time...

Last night I slept like a rock! Man I feel like a million bucks!

Later this morning, I'll be posting a longer version of what will be happening in the next few weeks.

Freakin Yeah!

Ok… VERY short form here….

My PET/CT scan came back negative.
All of my blood work with one exception came back negative.

The marker for the pancreas came back elevated. It’s supposed to be 30 something, it was 300 something. That means that my pancreas may or may not have the cancer. Odds are, the pancreas does have cancer, and that it’s so tiny it cannot be seen with our equipment. THAT’S GOOD!

Ok… so I’m in a box that most people don’t get put into because of an accidental find during that ultrasound.

I will be going to Stanford to get a secondary consult to discuss treatment options for the liver tumor as well as chemo options to address the elevated marker.

Liver treatment will take place at Stanford. Chemo here.
The type of chemo (I can’t recall the name) is well handled… won’t lose my hair… may feel blah the next day.

VERY FREAKING COOL!

The "tummy cam" results.

Diagnosis: Gastric antrum (biopsies): No diagnostic histopathologic abnormality



English translation: no cancer in my stomach, esophagus or throat.




That's a good start! Now to just wait for the PET scan update tomorrow.

Thought I'd better put something here....

I haven't been doing anything new yet. First appointment tomorrow. FINALLY!


I'm tuckered out... and I don't know if it's because of the cancer, or just my mind (stress) making my pooped out. I'm sure I'll feel better once I have a plan of attack!

When is a "promise" not a promise?

Yesterday I felt like I went one round with Mike Tyson (with any other boxer in my weight class I may have made 2 or 3 rounds).


Anyway, people who I love and care for were doing their jobs as part of "Team Stanley"... to make sure that I don't miss something along the way.


The 1 round part came when I was pretty much told to be a little more "proactive" with this an not wait until Wednesday to at least get my results.


I caved in and phoned my oncologist today asking for my results of the lab work on the PET/CT scan. The person who took my call indicated that they would speak with the doctor and see if he would allow the results to be shared over the phone. "I promise to call you one way or the other" was what I was told.


Six and one-half hours later I phone back. "The doctor prefers to discuss your results in person, during your appointment. There aren't any cancellations yet, but if one come up, I promise to call you and let you know.


Ok... I'm still waiting for my call back from last Friday to reschedule my appointment. That was one promise broken.

I had to call you back to find out that promise two was broken.

You really expect me to believe that you'll really call me back to let me move up if there's a cancellation?


Yeah... Right!

So far, I like the doc and I'm not too terribly impressed with the front office. Perhaps I'm just having a shit day? Ya think? Yeah... that's probably it.


Bottom line for me is, don't promise something you cannot stick to or have no intention on doing. I've got cancer, I'm not stupid.


GRRRR

OH... and one more thing....

Folks worked for years to teach me to be patient, now I'm being too patient? Yikes! *grin*

Nothing new to report in my world.

Until next week, I won't know anything. It's kind of rough, the waiting game. I'm ready to get things started, start beating this.

PET/CT scan

Today I went for the PET/CT scan.


I started my morning with a tasty pineapple-barium smoothie! Yummo!


Then a little itty-bitty needle to test my blood sugar and to pump in the isotope.


Finally! Something perfect! Lisa (my PET/CT operator) said my blood sugar was perfect at 99.


The hardest part of today was sitting calm and still for 45 minutes while the isotope made its rounds in my body. I am like a 6 year old little boy and it just kills me to sit still. I did well though.


Once they put me in the big donuts (there were 2, one for the CT and another about a foot away from the first for the PET). I'll be darned if I didn't wake myself up snoring. This was WAY better than the liver biopsy!


Results are next week, so I get some time away from doctors and needles for a while.

Yesterday's Tummy Cam Adventure.

Yesterday I felt like Norm from the TV show Cheers. He walked into the bar and the crowd yelled Norm! I walked into Adventist Hospital and a number of folks said (didn't yell) "Stan!"


Talk about a smooth operation. That place has their act together. From the moment you check in at the volunteer desk, to admitting, to pre-op and then in for procedure.... freaking awesome!


The hardest part of the entire process was when they asked me my name, date of birth and what I was there for. Name and date of birth was a piece of cake... I had to tell them I didn't stand a chance of correctly pronouncing the proceedure name so I hoped the EGD was good enough.


I didn't feel a thing... not even a sore throat afterwords.


Initial findings were two erosions that were sampled for biopsy and a small hernia. We already knew about the hernia, so no biggie there.


I have my PET scan on Friday, then hopefully... if I feel ok after getting gamma rays pumped into me (hope I don't turn into the Hulk or something) I'm going to go catch Wolverine!

The word of the day...

The word of the day today is:

esophagogastroduodenoscopy

Very loosely translated into something understandable:

Tummy cam!

Todays appointment!

Today I met with Dr. Keech at the Enloe Cancer Center. Terrific gentleman who fielded a lot of questions from me and my mom.

He told me today, that my prior blood work was "bland". Pretty much, he indicated that if I hadn't gone in for another issue, nothing in my blood work would lead anyone to believe there was any problem.

He also indicated that the mass on my liver was "unremarkable". That is, it's not all that big and I am a great candidate to have it surgically removed. Basically, this mass is about the size of a walnut.

Now what remains is to narrow down where this cancer may have originated from. My colonoscopy was terrific. A pair of polyps that were "hyperplastic" (non cancerous). Other than those the entire pathway is good to go.

Tomorrow, I go in for an EGD. They'll give me a "conscious sedative" and send a scope down my throat and take pics of everything down to the stomach.

Friday, I go in for a PET scan. Dr. Keech indicated that this will look at everything inside me, even the bones, to drill down where the bad guy is.

Finally, today I gave a blood sample at the lab. I've been told that certain cancer in certain organs have markers that can be detected with specific tests. Again, more drilling down.

Today was a great day! I still have my work cut out for me, but I feel like the numbers are more in my favor now.

Today's the big day!

Today I finally get to meet the doc at the Cancer Center. It's been what? Like 5 days or something? Sheesh...

I'm all worked up. Partly excited to get things going... partly spooked cause I'm not really sure what to expect when I get there... and WAY shakin from WAYYYYY tooo much freakin coffee!

Thursday, April 30

Thursday was a busy day. That was very good because with some of the things I'm working on, I'm feeling more in control of what's going on and what I'm doing.

I picked up a copy of my complete medical history from my primary physician. That goes into the Journey binder so that I always have everything with me when I go to see any docs. All the new stuff will go in there as we go.

I spent lunch visiting great friends over at the zoo... I mean Lifetouch's lab. That was fun!

I spent the better part of the day at the Social Security Admin office. GREAT folks helped me out a lot!

Spent about 35 seconds at the VA office. Nice folks... no help at all.

Then, an unplanned trip to Ft. Bragg. Julie (my girlfriend) needed to get over here to do some emergency things with/for her mother.

Today, I continue to work on my binder ... I had a truck load of medical history.

Trying to sleep and not think so much!

I think the next thing I have to master until I get to go to my first appointment with Dr. Keech on Monday is how to actually not think all the time. I woke up again this morning, and man you can get dizzy with all the spinning that your mind can do.

My friend, Dana, suggested I put together a binder to keep track of all my stuff during my "journey". This journey binder will have all my results, calendar to track all the appointments, etc. I got that started right away.

Part of that binder is my health records. I phoned Dr. Peterson's office (my primary care physician) and let them know I wanted to make a request to get a copy of the latest lab work, the ultrasound, the CT and then the liver biopsy. Heather there said, "I'll make you a copy of your entire record. You're friend had a terrific idea." Man! That was easy :-)

Had a test with the City Of Chico yesterday for a job position that they have an opening for. There were two test periods scheduled. There must have been 50 candidates at my test period. They'll be taking the top 20 scorers on the test for the interview. I feel pretty good about that.

Today will be another busy day. Need to follow up with a number of agencies, just to make sure I've covered all my bases. Need to "kid proof" the kitchen, the cats are into everything. Finally, I think I'll go hide a while in Warcraft and blow up some monsters.


Most of all, I'm going to try not to think too much!

This mornings smile.

I didn't sleep well last night. I guess that's no surprise. Once the cats woke me up bright and early, my brain started spinning out of control. Once that happened, it was all she wrote.


I got lots of great email from friends and family overnight. That was really terrific!


The big smile came from a message from Dr. Mary Macsalka. "Quit looking shit up on the internet!" You don't know who these people are posting this crap.


Basically, I will be saving my questions for the doctors and not my Google Search Bar!

OH Yeah... BTW

Yeah

I'm freakin scared!

The events leading up to today's news...

I was having fits with my belly while at work. My former employer has a really interesting training program. Pretty much they (programmers) throw new software applications at you and disappear like a fart on the wind. "Good Luck lil buckaroo! We've removed ourselves from app support!"

Yeah.... so I have this nasty freaking belly ache.
My doctor prescribes some meds to get me through the bull shit.
My doctor sends me in for some tests to make sure I'm not just stressing out.

During my ultrasound, a 9mm mass was detected on the left lobe of my liver.

I went in for a CT scan to confirm the mass, and Yup... it was indeed there.

I was scheduled for a colonoscopy (my 3rd in the last 8 years). They found polyps again... but the doctor I saw indicated these were "hyperplastic and not cnacerous".

So, where I'm at now is to figure out what body component passed the cancer over to my liver.

My doctor has me moving on to other doctors to further address this issue.

Needless to say, I'm freaked out beyond belief.

I found out today...

Today I found out that I have cancer in my liver.

The doctor phoned me with the crappy news. I felt for him. (I guess that I'm still a bit in shock over this news).

So I have adenocarcinoma in my liver.

I meet with a specialist on Monday.

I guess where I'm going with this blog is a little record of whats going on so that everyone can keep track ( and so I don't have to email/phone so many folks each moment I get news).

I give a little pre-history in the next few posts.