Friday, February 25, 2011

Money, money, money, money, MONEY!

I've got this song stuck in my head with the lyrics "Money, money, money, money, MONEY!"  I can only remember one line of it, and since, let's face it, they lyrics aren't exactly uncommon, I have NO idea what song it is.  It's annoying to have a song running through your head that you can't figure out.  Oh well, I imagine it will occur to me at the oddest of times.

On the subject of money, last night, I got home to find a brochure in the mail from the hepatology department at UCLA with very helpful tips for starting my treatment.  The section that stuck out the most was the bit about finances.

Turns out that the market price for pegylated interferon and ribavarin (the standard treatment) are about $1700 and $1400 respectively ... a month.  They very dutifully warn me that some insurance companies don't cover the medications and that others have a huge co-pay and that I should get my financial house in order if I'm planning on paying for the meds myself.  I pull out my calculator, press a bunch of buttons, and find out that if my insurance doesn't cover the meds, the course of the treatment will run about $28,000 (assuming 9 months of treatment).  Oh. My. Frickin. G-d.

I must admit I panicked for a bit, and I went online to find out my pharmacy coverage.  Of course, that part of Healthnet's website was down for maintenance (that's how I roll).  I went to bed, only to be completely awake 3 hours later obsessing over the whole thing.  I didn't get back to sleep 'til about 4:30.

I got up about 6:45, and went back online to check my coverage.  Turns out self-injectibles (as pegylated interferon is classified as ... I hope) are covered, but I need to pay 20% of the price.  The ribavarin is an oral medication, so my $30 a month co-pay should cover that one.  Which brings the cost for me from a maximum of $3,100 a month to $370 a month.  MUCH more doable.  Still difficult, but doable.  Especially since I don't have the monthly budget to pay for it every month, and will have to rely on savings. Fortunately, I also received my tax returns this morning in my checking account, so I have a couple of thousand dollars to devote to this.  The tax return doesn't cover everything, but it will cover a great deal of it.  Okay, now I'm breathing easier.

I'm going to have to do some fancy footwork toward the end of the year, but in the meantime, I'm going to get through it all.  Oh yes, I am!!  Brief panic aside, I'm incredibly grateful that I have resources to deal with all of this.

I have calls into UCLA to figure out where I go from here, get the pre-authorization stuff rolling and find out when I'm actually going to start getting the meds.  It all should start in the next couple of weeks.  I'm starting to get a little antsy about getting it started, so I'll be closer to getting it ended and back to my old self!

Tuesday, February 22, 2011

Things I did this weekend

Last weekend was the last three day holiday weekend until Memorial Day at the end of May. 

So, here's what I did:

1.  Auditioned for an AFI film in which my character was a middle-aged schlub who works as a fast food employee and is having an affair with a married woman.

2.  Auditioned for the title role in a short film (paying!) based on Aeschylus play "Agamemnon."

(It really is too bad that my casting is so limited.)

3.  Played a truly scandalous amount of an online game called "Battle of the Immortals."

4.  Made (yes, made) pillows for my truck, so if I need to take a nap, I'll be comfortable.  (I'm thinking about changing my middle name to "Martha.")  Pictures to come soon.

5.  Bought the rest of the fabric and batting for my mother's quilt that I'm hoping to get done this year, if not by the summer. I also cut a bunch of fabric for the same project.  I'm hoping to post some pictures soon.

6.  Cleaned my kitchen (and boy, did it need it).

7.  Did all of the laundry but the towels.

8.  Got the finishing touch-up done on my leg tattoo.  By the way, if you ever want a tattoo done and are in the Los Angeles area, Dave Davenport at Marginalized tattoo is not only an amazing tattoo artist, but is just the sweetest guy, and totally adorable.  Alas, he's already taken.  His dog that keeps him company while he works is also very sweet.  You can check out Dave's stuff at (some very adult stuff in his blog, just FYI).

9.  Watched Piranha 3d.  Best. Movie. Ever.  I can't remember laughing that much in such a short period of time.  Michael described it as the Citizen Kane of monster fish movies.  He's not far off.

Friday, February 18, 2011

That was interesting

Yesterday Michael, and I trekked to UCLA so I could have an upper endoscopy done.  It wasn't nearly as scary as I thought it was going to be, although I'm sure it was fairly boring for him.

We got there extra early because we were afraid of the traffic on the 405 (a freeway I try to avoid 95% of the time, even though I live right next to it).  After the initial scare that we wouldn't be able to find parking in the crowded parking lot, we parked and headed up to the third floor of the 100 UCLA Medical Plaza and popped into the Medical Procedures Unit.  I signed what felt like 8 billion pieces of paper, and then waited for over an hour and a half.  Finally, all the pieces came together, and they called me in.

The best part?  They didn't put me on a scale to find out what my weight was.  They just asked what I weighed.  Yes!!  Also in the good news category, my blood pressure was initially 140/84, which is WAY lower than it is when I check in at my other doctor.  Pat put an one id bracelet on my left wrist and another bracelet that said, "Falling Risk" and

The check-in nurse, Pat, then left me alone for a bit with the curtains closed, so I could take my shirt and shoes off and put on the attractive patient's robe.  I snuck out to use the bathroom, and when I came back, a very peppy young gentleman by the name of Clarence came in and observed that I wasn't ready to be transported yet.  My IV hadn't been started.  5 minutes later Pat and another nurse came in while Clarence hovered.  A flurry of activity occurred all at the same time.  An IV was started, blood pressure was taken, an oxygen tube was stuck into my nose, and questions were asked.   Many, many questions.  "What are you having done?" (Ummm, don't you know?), "Are you allergic to any medications?" (for the fourth time, just penicillin) "Do you have Hep C?" (Ummm, that's why I'm here) "Are you on a transplant list?" (What??  Why should I be on a transplant list, my liver's not that far gone, should I be on a transplant list?)  They quickly assured me that it was okay, that they were doing this so I wouldn't have to be on a transplant list.  (Whew!!)

Before I knew quite what was happening, everything was set up, and all the tubes connected, and Clarence was wheeling me into another room where Dr. D said hello in that very charming italian accent of his, and shook my hand.  A student doctor named Maya from the University of Massachusetts was introduced, and I was told she would be observing the procedure.  The nurse whose name I don't remember, (I'll call her Winny, just because) must have asked me three times why I was there and what they were going to do.  I think this was more to make sure I understood what was going on, and that they were indeed doing the right test.

Winny then positioned me on my left side and put some support under my right side, and turned the oxygen on.  I actually felt very comfortable.  Then she said that she was going to give me some medication via my IV.  I said okay.  A couple of seconds later, I felt a little dizzy, but fine.  Then she said she was going to give me some more, and I don't remember anything until another nurse woke me up back in the original curtained area by asking me if I would like some apple juice or ginger ail.  Whoa!  I thought I would be semi-conscious, but I could have been sleeping in my own bed at home, I was so out of it.

After a while, I finished my apple juice (which is good, considering I hadn't eaten or drank anything in almost 20 hours), and I was sufficiently alert so that I could get dressed and ready to go.  Pat thought the doctor was going to come in and see me, but it would take some time since he was in a procedure.  I ended up waiting for him by the patient lockers.  She finally said that since my paperwork said the test was normal, she said I could go, and that I was to call him if there were any questions.  She handed me a couple of instructions papers, one of which was a series of pictures of my esophagus, stomach and upper colon and the words "Normal Test" on it.  I have never actually seen that part of my body from that angle, so found the whole thing quite interesting.  It was really brightly lit though.  I'm thinking about framing it.

I ambled out to the lobby, where Michael had fallen asleep, and then went to the parking lot where I paid for the parking ($11.00!!!).  Next on our agenda was FOOD!! and to get his cat from the vet.

Except for a splittling headache about 10:00 p.m., it all went fabulously, and I'm very happy to know that I don't have to worry about any bleeding nodes as I start this whole medication treatment!

Wednesday, February 16, 2011

Tomorrow is another big day ...

Tomorrow I go in for an upper endoscopy.  Fun, fun, fun!  I have to admit, I'm a bit nervous, but it will be fine.  They're sedating me, and then when it's all over, I'm going to do some serious eating.

On Friday evening, I have an audition for an AFI film, and on Sunday, I have an audition for a short film based on "Agamemnon."  I am auditioning for Agamemnon. I'm kinda excited to be doing some film auditions.  Need to beef up my film repertoir and skills.  I love theater, but it's never going to pay the bills here in Los Angeles, but will help me keep my chops in good working order.

On February 28, I have a liver biopsy scheduled.  Oh yes, that will be fun.  My sister is being a doll and coming in from the Inland Empore to take me to and from the doctor and to keep me company.  After it's all over, there will again be serious eating.  Just sayin'.

Thursday, February 3, 2011

Endoscopy ... here we come

I received a telephone call from UCLA this morning to set up the appointment for an upper endoscopy.

We've set it for February 17 at 12:30 p.m.  The procedure should take about an hour and a half total.  I will be sedated.  Fun, fun, fun.  I'm hoping Michael will be able to take me, but if not, then I'll start looking around for somebody else to go with me and get me home.  ( anybody?  Hey, it worked for George Rekers.)  They won't do the procedure unless somebody is with me to take me home.  I can not take a taxi or a bus.  This really grates on my last "I'll just do it myself" nerve, but learning to ask for help is something I'm working on, so here we go!

Yesterday, I informed the managing partner that I will be going through some medical stuff this year, and that while I hope nothing changes in work attendance, etc. I might have to take more time off work for illness than I normally would.  We didn't discuss what would happen if that time goes over what I have allotted.  I'm assuming I would have to make up the time.  He asked if he could tell the other two attorneys, I said that was fine, but that I didn't want to have long drawn out conversations about it with them.  Mostly, I don't want to have to discuss all my intimate medical details with each of them.  Keeping a healthy distance between my personal life and them has kept me mostly sane for the past 16 years.  Of course, given the fact that I'm recording all of these datails on this blog makes this a bit weird, but hey, welcome to the dichotomy of my life.

I asked about the liver biopsy procedure, but apparently my insurance has declined that procedure.  I'm not sure what that means as of yet, but hopefully it won't kink up any of the works.  I'll call and get more info from Dr. D. soon if it comes down to it.

Wednesday, February 2, 2011

And so it begins ...

I finally saw Dr. D. yesterday (he's my liver doctor), and we agreed to start treatment for the Hep C.

Whew.  The waiting was starting to really get to me.

I can't say I'm not a bit nervous, but, frankly, I'm happy to be starting.  Because once we get started, the quicker we are to having this behind me.

On the side of "life is ironic," there are four genomes for Hep C, conveniently known as Genome 1, 2, 3 and 4.  Types 1 and 4 are the most common in North America and the most difficult to treat.  Types 2 and 3 are rarer, but respond to treatment easier.  I have Type 3.  Type 3 is easier to treat, but I had to laugh a bit yesterday because the new medication I've been waiting for (Telapravir) is not used to treat Type 3, only Type 1.  So, one of the main reasons that I've been waiting for treatment is moot.  However, I'm glad I waited and did the artistic things I did before starting the treatment.  The wait gave me an opportunity to prepare a bit, not get thrown into anything without arranging my life first, and allowed me to do some amazing projects over the past year.

Of course, the FDA has not gotten their heads out of their asses long enough to release Telapravir for treatment, and I'm not willing to wait anymore anyway.

So, it all works out for the best.

As it stands now, the plan for treatment over the next month is to have an endoscopy done to find out if I have any nodes in my esophagus and stomach that might bleed under treatment.  If so, they treat the nodes before beginning treatment.  If I understand correctly, treatment consists of placing rubber bands around the nodes.  Sounds like fun, huh?  Fortunately, when they do this, they sedate me.  I don't know if that means that they knock me out and wake me when it's over, or if they just put me into a twilight zone.

At about the same time, they want to do a liver biopsy on me to see the extent of the damage to the liver.  I've had this before, and it's not horrible.  Again, I'll be sedated (although I don't remember being sedated the last time, but that was years ago).  They also keep me for four hours afterwards to make sure that I don't bleed.  I guess I'll have to bring my kindle.
The only issue is that I'm not allowed to drive myself home after either of these procedures.  I'm also not allowed to take the bus or a taxi.  So I guess I'm going to have to prevail on the kindness of one of my friends, or a convenient stranger.  Maybe I can find somebody on  hahaha.  Just kidding about that last one.  Michael has expressed his willingness to take a day off work to transport me.

I have an appointment with the doctor on March 7 to follow up on all of this, and then I think we schedule the appointment with a nurse to teach me how to administer the new medications, and I'm off to the races.

I also need to make another appointment with Dr. M to adjust my HIV meds because some of them might be contra-indicative with the Hep C meds.  Anemia, etc. is apparently not fun.

All of this reminds me that I need to have some blood drawn today or tomorrow and have the test results sent over to the doctor.


P.S. -- today is my 43rd birthday!  Woohoo!!!