Thursday, October 29, 2009

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.

Wednesday, October 21, 2009

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.

Sunday, October 18, 2009

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...

Saturday, October 17, 2009

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.


Wednesday, October 14, 2009

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???

Sunday, October 11, 2009

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.

Saturday, October 10, 2009

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.

Thursday, October 8, 2009

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. ;-)

Saturday, October 3, 2009

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.