Chordoma Conference Trip

THURSDAY
Right after work [3rd shift in a plastic factory], I went over to my mom's house to help her finish packing and to head down to Madison, WI. We rode halfway there with my aunt Sandy and my grandma, then we met up with my mom's friend, Chris, who took us the rest of the way down to the Madison area where we spent the night. And I finally got to watch the last of the Harry Potter movies with Chris' daughter, Jessica.

FRIDAY
We headed out to the airport around 3:45 in the morning and arrived there around six. We took off at around 8:30 that morning on AirTran from Milwakee to DC. And I was so excited because I was going to get the window seat, which I did but there was a problem. I had the only window seat without a window. That's right, I got the sucky seat in the middle of the plane that didn't have a window. The plane ride was around an hour and a half long. We also got to ride the metro and honestly, I liked it. It was very convenient because the metro stopped right across the road from the Marriot North Bethesda hotel where we were staying and where the conference was taking place.

Welcome & Kick off Remarks
Three important words were defined in this session: survivor, survivorship, and advocacy. A survivor is anyone with a diagnosis of cancer and for the remainder of life where as survivorship is living with, through and beyond cancer. Advocacy is the act of pleading for, supporting, or recommending.

Care for Caregivers - Walking on Eggshells
This session only I went to. Mom went to the Patient Roundtables and Chris went to Chordoma 101, so I don't know what happened or was said in either of those, but I can sum up with I learned in Care for Caregivers. The main thing is to remember that you are not alone. It may feel like it at times, but there are others out there dealing with the same situations, even if there's only a few or if there is a lot. Also, just take the time to breathe! Just take a few minutes and breathe. Realize that it doesn't have to always be go, go, go. There's always a few seconds to breathe. And occasionally you have to be selfish - take care of yourself. Go out with your friends, watch a movie, just relax and take care of yourself. All is pretty simple advice, but like Amy Sales said, it's things we forget to do when in a situation like this. Amy Sales wrote the book Walking on Eggshells: A Caregiver's Guide to Practical, Real Life Direction on What to Say and Do When a Loved One Has a Life-Limiting Illness. 


SATURDAY


Community Action Panel
People got up and talked about different fundraisers that they had done prior to this conference. There were many neat ideas that definitely got my mind going. I have a few ideas right now that I hope to some day make a reality. But at this session they asked me to stand up and talk about the blankets I've been making to raise the money to be able to go to this conference and for the foundation. 


The Survivors Panel 
A few long time survivors of Chordoma sat in front of us and talked about everything is for them. The main thing they had to say was: hope. Hope was what got them to where they are today. During this session I could tell something was wrong with mom and a few seconds later she turned to me and asked where we were. Chris and I took her out into the hall to calm her down a bit. It took a few minutes, but then she did remember where we were but she didn't remember going from sitting in that room to where we had taken her. 


Ask the Experts
*Is Chordoma cancer?
A tumor is an abnormal growth and cancer can spread or reoccur. Chordoma has been described as a malignant tumor.
*What is life expectancy?
It's gross averages. It's a combo separated by space and time. It's relatively hard to get an average because it depends on how long the study goes on.
*Any clinical difference in radiation types? 
Not really sure. Carbon Ion Radiation can cause damage to the normal tissue. Proton Radiation isn't as damaging to the normal tissue. Over the years a lot of Proton Radiation places have been showing up - if going to one, make sure they know what they are doing and that they have dealt with your type before.
*Surgery vs Radiation.
Sometimes surgery and radiation are better together.  
Surgery can't always remove all of the tumor, but sometimes radiation does more damage.
*Are there any drugs out there that cure Chordoma?
Simply put, no. There are no drugs found to cure Chordoma and there is no reasonable reduction show to happen from taking drugs. Some may have slight effects for a short period of time, though, such as Glivic. 
*How often for Check ups?
After surgery, it takes about 3 months before they can tell if something is still there or if it is just scar tissue. After that, 6 months if nothing looks out of the ordinary. After that, though, at least once a year to make sure. Not sure why some (aggressive) types reoccur after 3 months and some don't show back up for ten years.
*Why do drugs stop working?
Drugs might stop one part but not the others. It might attack the the big cells but not the little cells in the tumor. 
*Calcify?
If it seems to have calcified before any treatment, it's not really calcified. It's more likely that the tumor growing is pushing against the bone and making it look that way. If it is after treatment, then it's because that's the body's natural way to heal.


Video Interview
That afternoon I had a video interview where they asked me questions about how this has affected my life and family. Along with other various questions.


SUNDAY
The morning meetings/sessions that we had kind of recapped the previous days. Also we talked about future fundraiser ideas such as: a cook book, bake sales, blankets, and a personal e-mail asking people to donate 1-5 dollars and send the message onto their contacts - copied and pasted, not forwarded.


That afternoon Mom, Chris and I went to visit places in Washington D.C. since we were only about twenty miles from there. We saw the Washington Monument, White House, WWII Memorial, Korean War Memorial, Lincoln Memorial, and the Vietnam Memorial. After that we took a pedicab back to the WWII Memorial before going to the National Mall. There was a cop by the metro so we couldn't get on at the stop we planned but ended up walking by the Castle of the Smithsonian. After that we took the metro [that we could get on] to Union State to eat before heading back to the hotel for the night.


MONDAY
We  went back to Washington D.C. because we had stayed an extra day in Maryland so that we could spend a day sightseeing, even though we did a lot of that Sunday afternoon. But on Monday we did go to the Smithsonian Museum of Natural History and the Smithsonian Museum of American History. We headed back to the hotel after spending almost all day at those places. 


We ended up meeting up with my cousin Travis who lives out there and who I don't get to see all that much. The Cheesecake Factory is where we went with him and let me tell you, if there was one near me, I'd be broke. It was sooo good. 

TUESDAY 
We flew back to Wisconsin, where it was cold! Maryland had much better temperatures. We ended up staying over night down in the Madison area because of bad roads and then on Wednesday my dad took off of work and met halfway so I could be back home in time for work on Thursday night.


Through a lot of the trip we had to remind mom of small things like when we had gotten to Bethesda, when we were heading home, what day it was and what time it was. 


If my notes are confusing, I'm sorry. I'm currently doing this off of little sleep and I have been trying to fix mistakes as I catch them, but sometimes they slip by. Also there are more things we hear, did and said. As of right now, though, this is most of what I remember/have access to.

On the Way

Today my mom, her friend Chris, and I are heading out to go to Bethesda, Maryland for the third international Chordoma Community Conference from March 18th to March 20th. Short update due to finalizing packing and heading out early. Will post all about the conference shortly after getting back next week.

Chordoma Cancer

When I was only six months old, my mom was diagnosed with Chordoma Cancer, a relentless bone cancer in her brain. In 1994 my family went out to California so my mom could get proton radiation at the Loma Linda University. We were out there for about ten weeks and I don't remember much about it, but we were only about an hour away from Disneyland. Of course, because of that, my sister - who was seven at the time - didn't complain too much about being out there because we were on vacation and we got to go to Disneyland many times throughout the ten weeks.

Fast facts:

Location: Occurs in the skull base and spine.

Incidence: 1 per million per year: about 300 new cases per year in the US.

Average age at diagnosis: 49 for skull base, 69 for spine

Average survival: 7 years

Gender distribution: Affects men more frequently than women.

Treatment options: Primarily surgery and radiation.

Source: http://www.chordomafoundation.org/


 My mom, who was diagnosed at the age of twenty-nine, is still alive and kicking twenty-one years later. Sure the years have been tough and things have not always gone as planned, but my mom always has a way to see the brighter side of things and make everyone laugh. There isn't a day that goes by where she can be totally serious. Many think it is because she lives life to the fullest and enjoys everything that she is able to still be here with us.