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.”
Welcome 2009 (a month late)
As you may know it has been a while since I have posted anything on my website.
A lot has been going on behind the scenes here: new girlfriend (Bahar), online consulting, videos, pictures, marketing, social networks and more. Here is the longest blog post ever on Schmult.com. It’s a brief summary of all the things that are going on with my life.
J.O.B.- those of you that know the movie “Friday” will understand.
I have been doing a lot of online consulting for the University of Illinois, Worldmedassist.com and others. I’m looking to gain more clients i.e. more jobs.
However it is very very very (said like the captain from the Police Academy movies) important that I try to find a job. I haven’t been focused because I was enjoying the holidays, friends and family. Now is the time to step up.
I want to get involved with a job that doesn’t keep me in an office all day. I would like to have the freedom to be on the run, out and about or work from home. My ideal position is one where I can have fun and do more of what I love to do, like social media, new gadgets, video and music editing, producing, and giving my opinion to anyone that will listen. I have the techie experience and creative mind for that niche.
Although times are tough with the unemployment rate, I know that that job is out there. That may mean relocating but I’m open to options.
Videos & Pictures
I have been taking a lot of pictures with my Oktomat Holga and regular Holga camera. It takes a lot of time to figure out a way to get 120mm film developed, plus trying to find ways to convert my Holga into 35mm and not expose the film to any light before developing. I will be posting the pictures on my Flickr, Facebook, Tumblr, & Schmult.com.
Music
You may or may not know that I produced 2 tracks for Saint Louis University (SLU). I did a track for the men & women’s basketball team. At the beginning of each game they have an intro video on the jumbotron that includes my audio track. Another track that I produced is being used throughout the games to pump the crowd up.
My plan is to go down to Saint Louis to see a basketball game, hear the songs in the flesh, record a video of it and put it online.
It has been a long time since I have made some music. I have been receiving tons of good music CD’s from friends (John, April, Carrie, Sara, & more-Thanks). Plus I received Rockband for Christmas from Bahar. The new music has inspired me to start playing more guitar, bass, producing.. And maybe record some tracks with some vocals. Which is scary. Who knows? I just purchased the new iLife 09 that has a new upgrade for Garageband. It’s pretty cool so far but I haven’t had a chance to play with it enough. This is a good time to start.
I would maybe even like to record with some of my old friends. Maybe send you some tracks/audio and you record some audio from your location and we can collaborate. Anyone interested?
Schmult.tumblr.com
My goal is to try to continue updating my www.schmult.tumblr.com on many things that I find over the internet on a daily basis that consist of social media, tech news, fashion, consulting, music, marketing/advertising, gadgets, video blogging, pictures, creativity, positivity, entrepreneurship, movies, and more.
I have had a hard time trying to figure out if I should continue two separate websites (tumblr and schmult.com). All of it is a part of me but I would like to have more people involved on both sites. I just don’t know which direction I should go. What do you think?
Schmult.com
I have been recording lots of videos. But, in my mind, they don’t have the quality content that I like to produce, hence I haven’t edited them. I am looking for a new camera for video and pictures. This has been tough because it is hard to find a good camera that can record HD video in a video format that’s easy to edit in Final Cut Pro that also has a good megapixel camera at the same time. Maybe it isn’t out there. I’m not sure. Maybe I should have one video camera & one picture camera? Suggestions?
I have tons of ideas for videos, but the ideas involve more than one person. Things just pop in my head. I don’t have a team like Collegehumor.com does, nor do I have great sponsors and a show coming up on MTV. Although, if you know of anyone that would like to sponsor. Let me know!!
It’s hard to be the one man in a one-man act/video, cameraman, and audio guy and record a good quality video. I can’t just go to a populated location, sit my camera down and push record. My camera maybe stolen and I already look like a weirdo for filming myself anyway. LOL.
But, I gonna do it. I decided that if you enjoy the videos and they entertain you and you tell other people about them, then I have done my job.
Soooooooo, I’m going to post at least one video a week. So spread the word to other people and tell me what you think about the videos. I WANT to hear what you think. So comment, email me. Please?
Travel
Portland, OR
I have wanted to go to Portland next week to see my childhood friends, Carrie & Sara for their birthdays. However, planning hasn’t worked out and I’m not sure if that is going to happen.
I have the tendency to plan last minute and pay for it, literally. But that is how the cookie crumbles with all medical appointments I have and mostly my poor planning.
Florida- Mid February
I haven’t been on vacation in a long long long time. I haven’t been to a beach in a long time either, so I am tagging along with my girlfriend on one of her business trips down to southern Florida.
Costa Rica- Late March
I just got my passport and I have never been to a foreign country. Bahar’s best friend (Jodi) is pregnant and married to a guy I went to highschool with (Thad) so she is going down there when the baby is born. So why not? I want to pet monkeys!
San Francisco- Mid March
Again, I have never been to San Francisco. Bahar has another meeting in San Francisco so… why not ride the coat tails once again. I have a lot of techie connections out in San Fran too. Especially, from the old Jobulee.com/Project Elliott.com start up company that I worked on. At one point there was idea for me to be a guest speaker for a college Marketing course out there. I have some clients out there too, so it maybe a good idea to finally meet them face to face.
Cayman Islands- June
A while ago, Kerch had been talking about doing an ocean mile swim in June. I’m not sure if he is still going to do it. Either way, I am getting back in the water to train. My goal is to be able to do something like that too.
Denver
Going in June. Piet is getting married!! Plus I’m talking at the wedding!!!! But that means I can’t go to the Cayman Islands. Thank a lot Piet for your “ceremony.” Jerk.
Exercise
My oncologist in Indy told me that one of the most important things I can do while battling cancer and survive is to be active.
Because of the Yondelis clinical trial I am on and my lack of exercise since my surgery in May 2008, I have gained a lot of weight. Packing around 200-210lbs.
I have been observing a few people for motivation: Kerch, Lance Armstrong, Chev, EIU swim team, friends, and more. Bahar is really active too and it is just good health to exercise. I’m going to teach her how to swim and kick her butt!
My surgeon after the surgery was impressed on my short recovery. He mentioned that my past history of exercise might have helped.
That reminds me. If I have learned anything from all the doctors I have seen, I’ve learned that you have to treat yourself right with diet & exercise.
Recently, I consulted with the Dr. who installed the Meta Port in my chest. I wanted to see what kind of exercises I could or could not do. He basically told me no more swimming and no big arm motions. No motion above my head or anything like a chest press/push up.
I was really discouraged for a while, but when I went to Indy and talked to my oncologist and surgeon they both laughed out loud and said I could do anything I want. Swimming and lifting is fine!! WOO HOOO!!
So the next day I went to Bloomington, IL to swim with Kerch and his masters swim team. I have been working out as much as I can in Champaign & Chicago. Since the lack of exercise and the chemo, my cardio stamina has lowered. So slowly, I am building myself back up and remembering to not get discouraged because I am not at my peak performance like I was in college. My shin splints hurt when I run so I have been riding the bike, walking, and using the elliptical machines instead.
The next phase is establishing a regimen for swimming in Champaign & Chicago. Chicago is basically taken care of (thanks Bahar!) but in Champaign there are a few challenges I will get through. The University of Illinois has a master’s swim team that I used to swim with but I am not a student or faculty at U of I so I need a sponsor that is for membership. Anyone?
I have started to develop a regular schedule of weight lifting. I never really lifted while I was training in college because back then, I was more focused on the yardage for all my distance events. Now, I just want to be huge.
EXERCISE KILLS TUMORS!! SO SIGN ME UP!!
Bahar took this literally and I am doing the Hustle up the Hancock with her on February 22nd.
Nutrition
One of the things that the doctors haven’t told me much about is nutrition. I think legally they can’t tell you want to eat or tell you about different vitamins and herbs. They did tell me to watch out for what supplements I do take because they may have interfere or have bad effects when mixed in with my chemo.
Bahar picked up a book called “Beating Cancer with Nutrition”. In a short summary, everything I have liked before is BAD. Except, fruit!!!! YES!!
So we are both trying to find new recipes to incorporate into our diet.
I’m taking everything step by step to kill the tumors even more including eating a better diet. WHICH I’M GOING TO DO.
My old high school coach’s son, Trigger Jr. (little trig) is a nutritionist. He has told me about a few products, like Resveratrol & Genesis. Both products have been proven to reverse and/or kill tumors.
SO SIGN ME UP!! I have started to take Reseveratol on a daily basis plus some other vitamins/herbs that my doctor said were ok.
Cancer Update
I’m still doing the Yondelis clinical trial in Louisville every 3 weeks. Just last week I had new CT & PET scan and sent the CD images to Indiana University for review.
I scheduled the scans after seeing my oncologist & surgeon at Indiana University in Indianapolis. I went into the appointment thinking I would possibly be ready for surgery since all my tumors have shrunk and continue to shrink during the clinical trial.
I’m also thinking about going to the #1 cancer center in the US, which is MD Anderson in Houston, TX. I’m thinking about going down there just to get another opinion and for some reassurance that I’m doing the right thing. MD Anderson also has a Dr that specializes in my rare type of cancer. Once all that is scheduled and finalized I will let you know!
Dr. Rushing (my oncologist) is happy with my results because it is slowly working and that I look healthy. But he thinks we may have to go with a new trial, an insulin growth factor chemo clinical trial. Remember the plan I had to go to Ann Arbor, MI? Yep, that is it. But I did ask Dr. Rushing if he could find a way for me to get that clinical trial closer to me. So he thinks that I can have the trial in Park Ridge, IL. I’m waiting to hear back from Indy to find out all the details to start that trial (so more chemo ahead).
As you just read from the previous paragraph, I’m still not ready for surgery. I saw Dr. Toloukin and he agrees with Dr. Rushing to not do surgery. It could make my life a lot worse and I’m already a healthy person with a full life. So, I’m not looking towards making my life any worse. Although, he did tell me that most people at this point with this type of cancer are dead. I knew the personality of Dr. Toloukin from my surgery and expected something like that, but I really wasn’t ready to hear that.
I also wasn’t ready to hear from my Dad that in May when I was in the operating room, he was told from a Dr. that I had a 10 in 100 chance to make it to the end of 2008.
I spent my new years at Chemo in Louisville with Bahar. She decorated the room with Christmas lights we got dressed up and toasted 2009 with sparkling water…
But hearing that messed with my head and still kind of does, but is it slowly going away and it will go away.. I’ve beaten all the odds and now no one has any idea how this will play out but me and my odds of making it to 2010 are just as good as any of yours!
But you know what? I’m healthy just with a bunch of tumors in me that aren’t affecting any of my organs. At least no one said they are affecting me in a bad way. FYI THEY WILL NEVER WILL!! HA HA HA HA DEVIL!!! How do you feel about that!!
Guess what? I’m not going to be leaving you guys either! I’m going to be an old man with children and grandchildren. Maybe even great grandchildren!!
If you don’t believe in: Miracles through Jesus & God. Then you got a problem. It’s just shocking if you don’t have that faith. It’s really really really simple.
I’m living proof and I will continue to be living proof!! SO WATCH OUT!! DEAD MAN WALKING!!!
BRING IT!!!
Flickr Pictures
