The Big Update
I’m sure you have recognized that I have not updated my website since April. A lot has been going on in the last few months.
May
In May I stopped my trial oral chemotherapy because I had a 9 day stay in the hospital. I went to the hospital because I had horrible back pain and I was having trouble eating. While I was in the hospital I was only allowed to have 2 full meals. Thus, I lost a lot of weight. The Dr.’s found out that I had some blockage in my bile duct and they wanted to put in a few stints to open the blockage. The blockage was not allowing my liver to extract my bile into the intestines. I finally had 2 stints put in the bile duct by using the ERCP procedure. The stints made everything feel a lot better and my liver labs were back to normal.
June
After I was discharged from the hospital my Doctor’s and I decided that we should take the opportunity to find a new chemo trial. So I continued not to take chemo through the month of June. Next thing you know it, I found myself back in the hospital because of pain in my ribs. After some test my liver was still functioning well, but it looks like that I had some gull bladder stones. Plus the doctors gave me some pain medication to help me function throughout the day. I was only in the hospital for 3 days, but during those 3 days I became very excited and at peace with the next decision that I was about to do.
Just a few days after the June hospital stay was Fathers Day. Bahar’s mom invited my family to come over for a Fathers Day dinner. My Dad, Aunt BJ, & Stan came up from central Illinois and we had a great time together. Later that night, I proposed to Bahar! FINALLY!
The proposal
I proposed to Bahar through a photo album. The photo album consisted of all the pictures of the adventures that we had during our relationship. At the top left hand corner of each page I wrote “ W-I-L-L Y-O-U M-A-R-R-Y M-E-?”. At first, she didn’t see the written proposal, so I had to show it to her and she began to cry and said “YES!”.
I didn’t have a ring ready for her at the point in time, but I had an idea of what I wanted to give her. I wanted to give her my great aunt, grandma, and my mom’s diamond ring. She loved the idea and we finally got the ring made and now she can’t take it off. She loves the ring so much. I’m so happy too.
So the next step is the WEDDING.
We decided that we wanted to get married before November and the holiday season. We are ecstatic, happy, honored and excited to be a part of Wish Upon a Wedding. We can’t believe that we were selected by Wish Upon a Wedding to help us organize and manage our wedding. They are an amazing organization that is out there to help couples that are going through hard times because of a disease. There aren’t too many organizations like this out there and we flabbergasted that our wish was granted.
To learn more about the company and to read our wish application please visit this website (Seriously you should read it is really good):
http://wishuponawedding.org/nick-and-bahar-have-been-granted-a-wedding-wish/
New Chemo
After 3 months of no chemotherapy I was finally was able to get into a new clinical trial. Most of the people on this trial are in France. I’m going to be the only person in the United States that will be on these new drugs. My blood work and liver labs are doing great and are under the regulations for the study. I started the 2 new oral chemotherapies.
Netty Pot Video/February 2010 Update
Just a short & quick update for February 2010. All the tumors are stable!! One grew about 5%, but that is still considered stable!! WOO HOO!! Keep up your Prayers! Thank you Jesus!
December 2009 Update
For the past 6 weeks I have been on two chemo-therapies. Chemo R1507 IV therapy every two weeks for about an hour a session & Nexvar oral chemo everyday.
On December 22 I got my results from my CT Scan. Read more
November 2009 Update
As you know I have been MIA from the computer lately and I haven’t updated at all. No videos or posts. I’m sorry about that, but I have been updating a lot of pictures. Especially from my recent trip to Portland, OR. Portland was awesome and I hope to post some information of my trip and other things that I have been doing these last few months.
So, during the summer I was taking a clinical trial oral chemotherapy. After taking that chemo everyday for 6 weeks the Dr.’s saw that the tumors were still growing. Although they did have another trial open for me. They called me the day before I left for Portland and told me to come in and sign the paper work to start another clinical trial.
The trial is 2 chemotherapies. The 1st one is an iv chemotherapy that is an insulin growth factor. The 2nd chemotherapy is just like the oral chemo that I took during the summer. I have been looking for an insulin growth factor since May of 2008. It has been hard to find this chemotherapy because of the limited amount of people who can been on this trial. Finally, I’m on the insulin growth factor chemo. Dr. Rushing from Indiana University has been talking about this chemo for a long time. I’m sure he is just as glad that I’m on this too.
Chemotherapy schedule: IV chemo every 2 weeks at the University of Chicago. Oral chemotherapy taken twice daily.
I’m not really sure how long I will be on this, but I’m just happy that the University of Chicago has given me this opportunity. They have been extremely helpful on getting me the treatment that I need on a timely basis.
Just one step closer to killing these tumors!
August 2009 Update
Just after the trip to Costa Rica and before the 197 mile CowaLUNGa bike ride I was going to have chemo in Louisville. I have been going to Louisville for over a year and I was pretty sure I was going to go, so I bought airline tickets for my next 2 sessions. Usually they have patients only do 4-6 round of that type of chemo. I have done way, way more than that, probably around 17 rounds.
Well I had an MRI in Chicago because I was going to leave the next day for Louisville. I brought up my old scanned images for a pathologist compare.
Turns out, there was a new tumor by/in my liver. To be honest, I was a little upset. Bahar & I left everything at her house and walked about 8 miles on the lakeshore after we received the news. After the walk, I was fine and I talked to my Dad & BJ to give them the news.
The next thing was to call up Dr. Rushing in Indy to see what he thought. He wanted me to do an insulin growth factor receptor chemo. Well I remembered a doctor at the University of Chicago, Dr. Undevia that actually was doing the hands on study for the insulin growth factor. So I called him up and he called me that day or the very next day.
He told me that he may have a drug that is even better than the insulin growth factor and the chemotherapy was in a pill form. I immediately said, “I love you”. I was really excited to hear a oral/pill form chemotherapy!
I met with him and he told me that the insulin growth factor study is closed at the time and maybe open again back in September. There is no way that I could wait until September for chemo. Then he told me about a new study that he is “excited” about. The oral drug is called Bravanib. It’s just like the Yondelis in Louisville, the drug tries to cut off the blood going to the tumors. But this drug was in a pill form and I would take 4 pills a day.
On August 11, 2009 I started daily taking the Bravanib pills. I have to take the pills in the morning so I can feel any of the side effects and write them down in my diary. Yes, I have a diary of when I took the pills and the side effects.
The first few days, I was hazy (I call it “drunk”) for about an hour or less. Then I feel perfectly normal. A lot of people who have been on this drug have felt tired. I am not tired at all, I feel perfectly fine.
I actually started to get back in the water at Northwestern University. I have been swimming alone and a daily basis. I’m planning on racing the 2.5k for Big Shoulders on September 12, 2009. I have never swum anything that long (2.5k converts into 1.55miles.) before, but I know I can do it no problem. As long as all my wounds are healed up from the old and new port. I do have a stitch still hanging outside my new port, but no infection. I would like to get it covered before I jump in Lake Michigan.
I will be posting on Teamschmult.com more events that I plan to do soon. (e.g. City Chase on August 22, 2009).
It looks like I’m just going to have to kill these tumors by working out and getting back into shape, however I KNOW these pills are going to work too. Thank you JESUS! And God, well same thing.. and everyone who still prays for me, well just everyone THANK YOU!
Piet’s Ceremony
Late June I went to Colorado Springs to celebrate my friend Piet’s ceremony. He got married and Bahar flew all the way in from Chicago. She was stuck at O’hare airport for 9 hrs because of a storm. She took a red eye flight to Denver and met with some guys that were driving to Colorado Springs. She finally made it on the day of the ceremony at 5am.
I was in Colorado for a number of days to partake in the bachelor party, rehearsal dinner, ceremony, & BBQ.
Just before I left to Colorado I bought a new camera. The camera I bought was the Panasonic DMC-ZS3. It is an awesome picture camera and shoots video in HD. All the pictures of the trip to Colorado are here: http://www.flickr.com/photos/nickschmidt/sets/72157620601202093/
This is my favorite picture from my new camera: http://www.flickr.com/photos/nickschmidt/3672859461/in/set-72157620601202093/ (It took some amazing pictures at night.)
Piet & Lisa asked me to actively participate in the ceremony. They had 3 people speak under 4 mins about equality, respect, & perseverance. Just to let you know, everyone went over 4mins & they all used notes when speaking. I did it under 4mins & I didn’t have notes. Jason & Lisa asked for me to talk about my battle with losing my mother & cancer. So it was a very emotional subject for me to talk about around a lot of people I have never met before, but I was up for speaking. So just to warn you ahead of time, I started talking about my mom and I saw Piet cry. Then I started to cry. Yes, the rest of the time I didn’t really look into the eyes of Lisa or Jason.
Check out the video.
To see how accurately I spoke from my rough draft here it is:
I have been asked my Piet & Lisa to come up here and talk about my life over the past 3-5 years, under 3 mins. Yea right! So bare with me.
Well to sum it up fast my grandma, great aunt, and mom all died. Then 2.5 years later I was diagnosed with an extremely rare type of cancer. I have been going through chemotherapy for about a year and half
The earlier presentations talked about responsibility and equality. Neither of those will work if you don’t have perseverance. I’m here to tell you MY secrets of how to persevere through the difficult times and stay happy.
You need 2 things:
1. GOD- Weather or not you believe in GOD we all know that there was an intangible force that brought you two together. So we all know there is something out there!! There are many things that we cannot physically or mentality fathom about faith because is intangible. Faith makes everything possible and if you don’t believe in it, you will stop your future.
a. There are a lot of people that live by statistics. It’s one of the first things people ask when you have cancer. I have no idea what the statistics are because statistics are when something is completed or dead. I’m not going to die. Statistics are a way of the world, I live in this world, but I choose NOT to be that part of the world.
b. Another thing that comes to mind when you are single that you will never find a girlfriend or have a family. But I didn’t give up and I knew GOD would put the right person in front of me that could handle all this. 10 months after starting chemo I met my current girlfriend Bahar.
Which leads me into #2 and has 2
2. Friends & Family-Friends and Family are a critical backbone to get you through hard times. Let me rephrase POSITIVE friends and family members help you cope. However, you have to reach out to them as much as you do, so you both benefit.
My mom was a huge part of my life, maybe we were a little too close because we were like best friends. She has rheumatoid arthritis for 30 plus years and I’m sure she was in pain a lot. However, you would never know because she was still positive, fun, loved, and laughed. She is the strong woman that I know and probably will ever know.
My friends have been a huge supporting team behind all my treatments. For at least 8 weeks straight I received a present everyday in the mail from one of friends to show support.
After looking back at my family & friends I noticed 3 things that have helped me.
a. Never give up-Done
b. Laughter- Laughter has brought my mental state up to a higher level. Laughing at things give you a break from actually what is going on. Some people may say not believing in statistics and laughing everything off is an act of denial. Well it maybe denial for some people but not this person. Sometimes that hard for people to grasp. When there is laughter you feel no pain. Except when you almost pee your pains, or your cheeks hurt for laughing. How bad is that?
c. Love-Another powerful intangible element is love. It’s unconditional. You friends and family will always be there for you. It’s something hard to explain, but it works and gives you a gut feeling. It’s the reason why we are here. Everyone person here Jason & Lisa loves and wants you to take part of their special day. And every person here is here to show support of your marriage. I think I can speak for everyone here that we will always be there for you at any point in your life and we will make sure you are going on the right path to persevere through anything.
The Lesatz’s, Bethandy, Bahar & I also took time out to go to Pike’s Peak. Part of the video is Jen being scared on the bee.
Update June 2009
It has been a long time since I have given everyone an update with my treatment. I should say, my continuing good updates of recovery from cancer.
I haven’t given an update is so long because I have been having an amazing time spending with friends and family. I have also developed a new website called .com. Please go there to the website and join! Of course, I will be posting more about it later.
It’s brand new and I finally got done with the theme for the website, but it is always subject to change. I really hope you enjoy the website and join. Seriously.
By the way, how do you like the new theme for Schmult.com?
As for the treatment update. I have been battling Carle hospital about having my MRI results in a DICOM format so I could have IU double check the measurements of the tumors on a CD. Finally, I got that figured out.
I still need to send the CD’s over to IU so they can double check it. However, I will give you the results of what I have so far:
2 out of the 3 big tumors are sustained or not growing. The tumor that is in my pelvis area is shaped like a dumbbell and is hard to measure. . The results of that tumor are that is has grown 1 cm in the last few months. Which is nothing!!
Overall, it is a very good report. Thanks to God, Jesus, friends and family.
Keep up the prayers and I will continue entertaining you with a miracle, .com, & Schmult.com.
Walking across the Golden Gate Bridge
At the end of our 1st day in San Francisco we finished the 8 mile walk across the Golden Gate Bridge. There we found a trolley and took it back to Fishermans Warf.
I also had to touch the water to see how cold it really is, people were swimming in the water and it didn’t seem all that cold. While we were on the bridge we saw a helicopter go under the bridge. Turns out we were going to do that the next day, so that was really exciting to see!
Check out the video of the Golden Gate Bridge.
Walking from Fisherman’s Warf & Across the Golden Gate Bridge from nickschmidt on Vimeo.
Quicktime iPod
1st time in San Francisco
A few weeks ago Bahar had work meetings in San Francisco, so I decided to tag along. I have never been to San Francisco and it is the tech world mecca. So I wanted to check it out, however not much was going on in the tech world during that time because everyone was at SXSW.
So Bahar and I stayed at the Marriott on Fishermans Warf. We were shocked on how many people smoke in San Francisco. The hotel hallway smelled a mixture of skunk, cigarettes, & lavender air freshers.
We took tons of pictures that can be found on Flickr:
Set of pictures of the flight, 1st restaurant, & view of our room.
The first day was did a small video to show our room and a little present that we found from the previous occupants of the room.
1st time in San Fran from nickschmidt on Vimeo.
Quicktime iPod
The 1st day we walked from Fishermans Warf to across the Gold Gate Bridge. Total we walked about 8 miles that day. It was an amazing view and amazing time to spend with Bahar. I hope you enjoy the pictures as well. Of course I was wearing my F.S.R. t shirt.
See 2 sets of pictures of the “Walking the San Francisco Bay” & “Walking the San Francisco Bay 2″
Tomorrow I will have the photo set of the Golden Gate Bridge and video of us walking across.
HEARST JOURNALISM AWARDS
Do you remember the article that was in the News Gazette? If not check it out here
Well the article that Brittany Abeijon wrote about me won an award!!
She just sent me an email about her winning!!:
“I just got a letter in the mail saying I won Fourth Place with your story in the Personality/Profile Writing competition of the Hearst Journalism Awards Program!
I won a $750.00 prize and a matching grant goes to the U of I journalism department.
There were 106 students competing from 61 journalism schools across the country in this category. I am ecstatic.
Check out the other winners here: http://www.hearstfdn.org/hearst_journalism/press_release.php?id=56.”
Congrats Brittany!! I’m so happy for you!!
Brittany has a tumblr blog as well, feel free to stop by there.http://brittanyabeijon.tumblr.com/
Here is a snipet of what is on her blog “I love creative writing, literary non-fiction and feature writing. I love hard news and celebrity gossip. I am a self-proclaimed fashionista with a weakness for white wine and sushi.”
Flickr Pictures
