Eeek!!!

Time is getting away from me. My ride to the airport will be here in an hour and then I'm off to Seattle until April 8th. I'm going to try to finish up my posts about my DC trip while I'm there. I swear I will get to the really good parts soon!

I've taken two tests today, had an Avastin treatment and a blood draw, and I've run errands to the bank, drug store and gas station. What haven't I done? Oh yeah, PACK!!! That's next on my list, but it's been next for the last hour and I haven't even gotten my suitcase out yet. So why am I posting? I don't know!

Gotta go...

Update Regarding Amendment

For those of you wondering, the Senate passed the budget resolution on Friday afternoon including the Specter-Harkin amendment to increase the NIH funding. Thanks to all who took the time to contact their senators.

Well Hello President Lincoln... and Roosevelt... and Jefferson

After the complete fiasco that was my journey from LA to DC, I was left with only minimal sightseeing time. I had made plans to meet my friend Sara for lunch. I hadn't seen her in eight or nine years so it was a priority for me. That meant I needed to be a power tourist Sunday morning.

I got up early and headed for the nearest metro station. I headed for the National Mall to make the most of my time. It was a beautiful morning - not a cloud in the sky. It was a little bit cold for me. [I'll admit that I have become a complete wimp after almost four years in Southern California. We're kind of spoiled... okay, not "kind of," we're spoiled.]

Lincoln Memorial

I was at the National Mall before 9am and I went from memorial to memorial. For those of you who haven't visited, these are all located in a relatively small area. You can easily walk from one to the next, but by the end, you've covered a lot of ground.

Washington Monument as seen from the Lincoln Memorial

The Whitehouse as seen from Washington Monument

This is zoomed in dramatically and is also the closest I got to the Whitehouse. There was so much that I wanted to see. I had planned on checking out several museums, the changing of the guards at the Tomb of the Unknown Soldier, the Declaration of Independence and the Bill of Rights at the National Archives... All that time I spent working out how to fit it all in, my charts and spreadsheets, and I wound up having to wing it. I will definitely have to go back. I didn't get to see it all, but I absolutely fell in love with Washington DC.

The Franklin Delano Roosevelt Memorial was my favorite. It gave me chills - and it wasn't due to the cold either. The memorial blocks the wind. There are many, many quotes on the walls of the memorial, but the above quote was by far my favorite. For those of you who don't want to squint to make it out, it reads, "In these days of difficulty, we Americans everywhere must and shall choose the path of social justice... the path of faith, the path of hope, and the path of love toward our fellow man."

Specter-Harkin Amendment

Wednesday, Senator Specter (R-PA) and Senator Harkin (D-IA) introduced a budget amendment that would increase funding to the NIH (National Institutes of Health) by $2.2 billion. They could be voting on this amendment as soon as tomorrow (Friday). Please take the time to email your senators and encourage them to vote for this amendment. You can send a prewritten message through the C3: Colorectal Cancer Coalition website by going here. It only takes a couple of minutes. Thanks!

Getting There Is Half The Fun?

I usually avoid non-direct flights. I don't like having to change plans and I always have an inordinate amount of anxiety that I will miss my connecting flight. I was fortunate enought to have a Northwest Airlines frequent flyer ticket donated to me for this trip. Unfortunately, Northwest Airlines does not offer a direct flight from LAX to Reagan National so I had a brief layover in Detroit.

As many of you know, there was a major snowstorm on the east coast last Friday. When I checked my flight information that morning, everything was okay. There was a warning on nwa.com that anyone flying into Boston, New York or Philadelphia should rebook their flight for Saturday or Sunday and no fees would be charged. Washington DC was not on the list and according to weather.com, they were only expecting rain.

My flight from LA to Detroit passed without incident. Then I got off the plane. I checked the departure monitors to find out the gate for the DC flight, but all of the flights to Washington DC were listed as cancelled. I went back to the desk and asked what I needed to do. The man at the counter told me to go to the rebooking gates 41-43 and be prepared to wait. I went to those gates and got in line. I waited and waited and waited. I listened to people whine and complain (which I have very little patience for).

Finally, I was able to talk to an agent. The earliest that they could get me on a flight was Monday morning. MONDAY MORNING!!! It was Friday night! They wouldn't cover any expenses - they weren't even helping people find places to stay. I told the agent that Monday morning was too late. I needed to be there by Sunday afternoon. I even explained my situation. She was nice, but couldn't do anything to get me on an earlier flight.

I was determined to get to DC so I asked the agent if she thought I could still get a rental car. She was sure that it wouldn't be a problem and printed out a list of rental agencies with their 800 numbers. I headed for the rental car shuttles and started dialing. Each time I was put on hold, I hung up and dialed the next number. When I dialed Hertz, I got a hold of an actual agent and asked how quickly they could have a car ready at Detroit Metro Airport which could be retunred to Reagan National the next day. The agent said it could be ready in 15 minutes so I booked it.

I picked up the car and since my mom made me promise that I would get a hotel room and get some sleep, I stopped at a couple of the airport hotels, but they were all booked. So I used the very limited map that they had at Hertz and headed south out of Detroit. About 45 minutes later, I saw an exit for Monroe, MI that had a bunch of hotels so I stopped there. I went to the Holiday Inn Express and they had rooms available. While I was registering, I told the night manager my story and she gave me a room at the corporate rate and then said that it was late (almost 10pm) so she probably wouldn't sell it still tonight so she upgraded me to a jacuzzi room.

Saturday morning, I got up at 7:30am - that's eastern time (4:30am pacific) - and headed out. I picked up an atlas that was clearanced at the gas station ($.89). I can't remember the last time I drove somewhere unfamiliar without printed directions from the internet, but this time I did it old-school. Even with multiple stops, I was in Arlington, VA, where my hotel was located, by 4:00pm. I only ran into a little snow for about 45 minutes just outside of Pittsburgh. The roads were good, traffic was light, and nothing was going to stop me from making this trip! I'll tell you right now, it was completely worth it.

*** Happy 100th Post!!!***

I'm back from a very productive trip to Washington DC. It's going to take a while to cover everything about my trip so I'm going to do a series of postings. If you don't count this one - which I don't and I am the queen of Colon Cancer Sucks Ass - there will be five posts. I will give a little preview of things to come though.

Getting There is Half the Fun? I left last Friday. Remember Friday? The day with the snowstorms on the east coast? My journey did not exactly go as planned...

Well Hello President Lincoln... and President Roosevelt... and President Jefferson... What do you see in DC when you only have three hours to be a tourist?

The Amazingly Wonderful Gloriousness that is C3: Colorectal Cancer Coalition Stay tuned for obscene amounts of praise for the staff and the other advocates - and I swear it's not only because a lot of them may read this! : )

Goosebumps and a Polar Bear: My Day on Capitol Hill That should be self-explanatory. Well, it makes sense to me...

If Getting There is Half the Fun, What Kind of Nightmare is Going Home? I'll just say that a coupon for a free alcoholic beverage (which I'm not allowed to drink per my oncologist) on my next flight does not make me any happier with Northwest Airlines...

These posts may not come in this order, but I promise to have them all out within the next week since I leave for Seattle next Thursday.

Stay tuned...

Ready Or Not, Here I Come

All that blood... vials and vials of blood that they took from me on Friday. They tested me for so many things - disorders that I'd never even heard of. The results - COMPLETELY NORMAL!!! Well, completely normal except my liver function numbers which had ultimately led to the barage of testing to which I was subjected. Those numbers still came back elevated. What now? Well, Dr W has referred me to a hepatologist (an internist who specializes in the liver) and ordered an ultrasound of my liver. Now I just wait for Medi-Cal approval (see my last post for an idea of how that is going) on those appointments.

I leave Friday morning for Washington DC! I spent about two and half hours yesterday working out how to best spend my sightseeing time. There were spreadsheets involved and approximate amount of time needed to fully appreciate each monument, museum and historical sight. I wish that I could say that I was kidding. Honestly.

I'll be meeting with my of congressional representatives on Tuesday. Please consider contacting your senators and representatives that day to ask them to increase funding for colorectal cancer research and prevention. Information about our cause can be found at C3: Colorectal Cancer Coalition.

In other news, I ran over a traffic cone today. Okay, I ran over several traffic cones today, but only one was temporarily lodged under my car (it fell out after about 100 feet). A special thank you goes out to the woman who was so important that she couldn't break for a moment to let me switch lanes, but instead needed to pass me as quickly as possible just so she could sit in line at the traffic light to make a left turn. An apology goes out to the man who had blocked my lane with the traffic cones and was standing on his truck trimming the tree. I hope I didn't startle you, but judging by the look on your face, it was just another day on the job (maybe next time you could put a sign somewhere to let us know that you've blocked our lane).

Can't I Sleep A Little Longer?

I'm exhausted. I've been sleeping each night and taking naps every day, but I'm still tired. It'll be fine though as long as this passes before I head to Washington DC (9 days!).

Dr. W has ordered a bunch of blood tests for me. I'm going in Friday morning to have the blood drawn and then I meet with him on Monday so I'll get the results then. I guess that we're still eliminating possible causes for the low platelets and shoulder pain. There is also some ankle pain that I have to mention to him. He might send me back to Dr. K (my internist) to deal with that. I still haven't gotten approved for physical therapy or for a MRI of the neck. Medi-cal is being particularly slow.

I went to the Getty Museum today with my roommmate, Robert. He had never been there and I'll use any excuse to go there. We had a really good time... and the weather was great. We sat outside and had lunch. The only dissappointing part was the haze (read: smog) which obscured the fantastic views of the city.

Making Decisions

In the aftermath of my initial diagnosis, I made a vow to myself that I would do whatever it took to beat this. Up to this point, the steps were laid out for me: colon surger, chemotherapy of Folfox with Avastin, liver resection, adjuvant chemotherapy. There has always been a clear direction to go. That is until we reached adjuvant chemotherapy. What I would like to do - Xeloda and Avastin consistently for a couple of months - it not an option because my platelets are still low (55 at last count). With the low platelets, I cannot receive any chemotherapy drugs. Since mid-September, I have been receiving Avastin as a single agent; however there is limited clinical evidence that Avastin is effective alone. It really needs to be combined with something. We tried it combined with Erbitux one time in December. That led to the worst rash that I've ever had - more accurately, the worst rash my oncologist has ever seen!

At my last appointment with my oncologist, he encouraged me to at least consider trying Avastin with Vectibix. Vectibix is a new drug - I was enrolled in a clinical trial for this drug, but I was in the control group. I have been very hesitant to do this for one huge reason. Vectibix works the same way as Erbitux. 89% of patients experience a rash as a side effect and in 12% of patients, those rashes are severe. The difference between Vectibix and Erbitux is that Vectibix is a fully humanized drug whereas Erbitux still contains mouse protien. So there is a difference, therefore there is a chance that I may not have as severe a reaction.

I asked my oncologist for some time to think about it. I didn't want to even consider starting it prior to my trip to Washington DC. Really, I didn't want to consider starting it at all, but it has really bothered me that I wasn't considering it. I did vow that I would do whatever it took and my rational side says that it's just a rash. Well, I talked to my psychologist about it. We went through the pros, the cons, what I would tell someone in my position (if you're wondering - "suck it up"), and if I were to decided to try it, what would make it easier to get through. It was the last part that really started to make me think. I'm going to talk to my oncologist about this, but right now, I'm actually willing to give it a try with some conditions:

1. We don't start until April (after I get back from Seattle).
2. I see my dermatologist prior to the first dose to have a plan of attack in place.
3. If the rash is severe (painful, fever-inducing), I want to be admitted to the hospital.

Shocking, isn't it? I hate being in the hospital, but in retrospect, I think I should have been in December. It was brought up, but I didn't want to go and they didn't push it.

Since I started actually considering this line of treatment, I have been much more productive. I hadn't realized how much it was bothering me, but thinking that I might actually do it has been a huge weight off my shoulders. I AM willing to do whatever it takes to prevent a reoccurance.