Monday, January 28, 2008

And Treatment Has BEGUN!!!

Woo Hoo! I started radiation today and will begin Chemotherapy in a few minutes.

We started the day with a meeting with Dr. Ian Robbins, our Medical Oncologist and Diana, the Clinical trial coordinator. They explained the chemo process which is 175mg of Temodar sp? daily. The funny part is that to get to 175mg, I have to take 7 pills. :) You would think they could make that a little easier, but I am not complaining.

We also spent some time drilling Dr. Robbins and Diana on a barrage of questions that we had from exercise, to nutrition. They overwhelminly stressed for us to stay on a normal healthy diet and not go overboard with ANY supplements or special diets. They will be monitoring my bloodwork weekly and will tell me if they want any changes to my diet. They were absolutely emphatic that my diet should stay the same... STARBUCKS STAYS!!!! :) This is a huge relief to me as I had started to READ TOO MUCH and was getting crazy ideas into my head. I much prefer to listen to these doctors, who are significantly smarter than me, and who I have come to trust. They even told my wife to BURN THE DAMN CANCER BOOKS. :) We all laughed. The saying "Being the Smartest Person in the Room" only applies to financial dealings...Let your doctors do what they went to school for 20 years to do. :) I TRULY BELIEVE IN MY DOCS and I am truly comfortable in the treatment environment at UW Madison. I would recommend it to anyone. I actually met some people from Rockford in the Chemo Waiting room that were much further in their treatment and raved about their experiences as well.

Diana said something to us today that really felt good. I asked what the goal of this course of treatment is (again, I have read too much about the stats on Grade 4 Glioblastomas...). Her reply was simple...to make this disease chronic. In otherwords, focus on making this a treatable long term disease like asthma or diabetes. Very realistic goals. Quality of Life will be tremendous and extended indefinitely. That is an excellent goal if I do say so myself!!! Seriously, I really appreciate the way this group/team of Dr.s and Nurses talk to me. They absolutely refuse to quote stats to me because... I am not a statistic, I am an individual. I am Younger than most with this disease and in great general health. Everything is on my side.

They explained that it takes a long time to kill off the cancer cells and that they do not expect any changes and possible even growth immediately after radiation...the explanation is that they are irritating the hell out of my brain for the next 6 weeks and that irritation could look like growth. We will be having occasional MRIs after Radiation, during the 6 to 12 months of chemo cycles. No Growth is what we are praying for. If it stays the same size, that is a good thing. That is important, cause I want to know what I am trying to attain...where am I driving this boat too? :)

After meeing with Dr. Ian and Diana, I went to my first radiation treatment. I will have to get pictures to better explain this process, but the process is similar to a CT Scan or XRay. I lay on a table with a plastic mask form fitted to my face.... (kind of feel like Hannibal Lecter from Silence of the Lambs. :) )

They started by taking X Rays with my mask on to ensure they target the right areas. The target areas are the Right Temporal Lobe - where I had the mass removed, and the top of my head where they found the other mass. They marked up the mask, and had the Radiation Oncologist come in to verify the placements of the marks/targets. They then all left the room, I heard a buzzing for about 30seconds... first wave done... Then the table that I was laying on shifted about 90 degrees so they could get the shot at the top of my head. 30 more seconds of buzzing...then I AM DONE. It truly was that easy. Kim gets to come in to the room tomorrow to observe...We will try and get some pics!!! :)

After the radiation, because this was the beginning of the chemo process, I had to go to where the IV Chemo is adminstered and have an antibiotic infused to me via IV. The process took around two hours and I napped through much of it...thanks to the IV Benedryl that they started me with.

Some great news from Diana and Dr. Ian. They truly do not expect for me to have to deal with many side effects. That is some great news and I truly hope they are right!

So upon finishing the IV, around 4pm, we headed home! In Kim's bag (the size of an overnight bag I might add) is new anti nausea drug, refills of other drugs, and 40 days of chemo pills. All said and done, I spent $63.00. Thanks to this clinical trial, the $50,000.00 worth of chemo meds are free! That is truly a blessing. Dont get me wrong, I am blessed with a great insurance company, but not only do I have an opportunity to get aggressively involved with my course of treatment through this clinical trial, but the meds are free! You can only imagine the amount of stress that has been released from the financial sense knowing this.

So, all in all, a great day. I wrote a new song...it goes like this... 30 Days of Radiation on the Wall, 30 days of Radiation... Take one down, pass it around... 29 Days of Radiation left on the wall... I plan to sing it every day and reduce the number by one until we get to ZERO!!!

Keep your eyes out tomorrow, we will do everything in our power to get some great pics to share, including one of me looking like Hannibal Lecter. :)

3 comments:

Anonymous said...

And to think I almost sold my Starbucks stock!! Great to hear all went well..

markopat said...

Wow...I am so glad everything went well for you today Steve. I have been thinking about all day!

Just so I understand, the treatments are weekdays only, then you are home on the weekends with only the chemo treatments right? Please let us know when the best time to call you would be. Can't wait to hear your voice! Great post today!

Mark

~Val said...

Go get 'em! Being proactive always feels better than being reactive!