Good morning and happy Monday! I hope life has been treating everyone very well, and your days are filled with nothing but happiness and joy! For us, it is almost a false reality between rounds and especially between re-staging scans and consultations. We have so much fun, laugh often, and enjoy each others company to no end.
I was discharged from the hospital from my 4th round of chemo on July 20, 2012. We have been busy ever since. We seemed to have figured out the nausea issue. For the last two rounds of chemo, I tend to bounce back in about 2 days. This does wonders for us because I am able to function and gain more precious days as a “normal” person with my family. I have learned to dig deep and do all I can to potentiate the chemo. I start to swim, do yoga, lift weights, and run/walk as soon as I can. This exercise, coupled with eating very well, does wonders for my psyche and overall physical self.
I will digress for a short while and update on what truly matters most to me; my family. The Monday after my discharge, we had Logan’s 1 month appointment. We are happy to report he is as healthy as can be and growing like he should. He is in the lower percentile in every category but so was Landon. As long as he is eating well and accomplishing all the milestones, we do not have to worry. We cannot wait to see the interactions between Logan and his bigger brother. Landon already randomly hugs and kisses Logan. It’s the sweetest thing to watch. We are very blessed parents with two wonderful and beautiful baby boys.
As for big brother Landon, we could not be more pleased with the person he is becoming. The words and phrases that come out of his mouth speak wonders of his imagination and creativity. He blossoms each and every day, and his manners, respect and trust for us grows right along with his intelligence. He alone is cause enough to fight forever, but couple that with my beautiful wife, his wonderful little brother, my amazing family and support group, I have no choice but to gain strength, determination, and spirit each and every day against this awful disease.
As for my amazing wife, she is my strength. She had her 6 week appointment after birth, and she is as healthy as our boys. We are so blessed and thankful for the uncomplicated birth of Logan. The timing was ideal, and he is such a great and mellow baby. Andrea, without question, is carrying our family on her shoulders. Every day I thank God for her in my life. Every day I cannot imagine what she is going through and how she does it. She is my inspiration, and she inspires many others. I love you sweetheart!
As for me, a few things happened after the 4th round. Some decisions were made, and some groundwork was laid for other directions we may take. After my discharge, we traveled to the western suburbs of Chicago for a consultation for proton therapy. Once again, proton therapy is more precise than traditional radiation and is ideal for my situation. The effects of proton therapy on the tumor may somewhat be the same as traditional radiation, but the collateral damage to surrounding tissue is far less. Being close to many vital organs and vessels, this is a good thing.
Typically with radiation, surgery is not an option due to the extensive scarring. With that said, one has to decide between either radiation or surgery. First and foremost, IF surgery is an option, it is choice number one. Unfortunately, surgery is not an option for me yet. On the other hand, with proton therapy (and the concurrent chemotherapy I will be receiving), we are hoping that my surgeon will be comfortable and confident about doing surgery due to the greatly reduced scarring. Time will tell.
There are only about 10 proton therapy centers in the US. With that being said, the facility in Chicago is the closest for us. I/we would have to move to Chicago (Warrenville, IL) for 7-8 weeks if I do the first course. This will greatly increase the costs for us. As a side note, please continue to spread the word about our journey and possibly get more financial help. We cannot thank everyone enough for the time and energy already spent for our family. The support is amazing.
Moving forward, here is the consensus and plan:
1.) I am going to undergo another PET scan today. If the PET scan shows improvement or the status quo, I will finish out my current regimen of chemotherapy. This includes 2 more rounds. If it shows anything worse (our greatest fear), we will move on to another option.
2.) After we decide whether to undergo this regimen of chemo further or not, we will discuss which route to go next. This includes more consultations between my local oncologist, Mayo Clinic oncologist, and Sloan-Kettering oncologist.
3.) After my current regimen, the next step is up in the air still. There is another course of chemo I can start. I can also start proton therapy coupled with chemotherapy. With the proton therapy, we can do half of the treatment, re-scan, and see if surgery is an option, or we can just do the full treatment of 7-8 weeks. As a far fetched option, surgery may be an option now (depending on what the PET scan shows). Lastly, there are a couple of clinical trials to be utilized.
The further you go along in this journey the more you realize what oncology really is and what it entails. It’s a science and an art. There really is no right or wrong decisions. And every question does not have an answer because the doctor honestly does not know. We do not know my prognosis. We know the statistics, but statistics give an average and past patients have to establish both the good side and bad side of the average. We are hoping for the very far end of the good side of the curve.
I was told by a stranger (and now a friend) to get as many opinions as possible. Every one thinks differently, and each doctor has their own unique background. It is reassuring to have the checks and balances in my medical team. We make decisions together, and we hope and pray they are the right ones.
As far as medical updates, this is where we are currently. I would now like to take a moment and share the positives of the past month. We have been humbled and honored at the out pour of help and generosity for our family. My friends and colleagues at the Grand Rapids airport held a bake sale for us. It was truly a remarkable experience. Thank you, from the bottom of our hearts, to Cindy and Scott Senior, Amy Fannin, my American Eagle colleagues, the Delta employees, and the entire passenger and airport employee personnel that stopped by to give support and join our fight. Thank you!
In addition, thank you to Troy Heverly, his entire family, and all the supporters they brought together for their annual golf outing. This outing is in great, loving memory of Troy’s father. I never met him, but what a passionate and determined group that comes together each and every year to honor this great man. Through this golf outing, they sponsor a family (this year they sponsored two families) each year and donate the proceeds to them. We were very humbled, excited, and brought to tears when they decided our family would be one who is sponsored this year. Thank you, Hevery’s, for the wonderful opportunity to be a part of your lives. Thank you for your support and generosity! It was a perfect day.
Lastly, I want to thank you to all of our friends and family who have benefits in the works. We truly need all the help we can get, and every little bit helps. Thank you for volunteering your time, energy, and wonderful efforts for our family. We cannot and will not do this alone, and you all make that possible. We look forward to seeing everyone at these benefits and fundraisers. Thank you from the bottom of our hearts for your selfless efforts, your loving hearts, and your support each and every day. You all make this fight all the more important for it is a great and wonderful world we live in. It shows through in the darkest of times. We love you all very much.
Please say an extra prayer or two for our family, especially today. We dread the days I have to get a re-staging PET scan. As you go about your Monday’s, please keep us in your thoughts as we find out what my cancer is doing; as we find out if it spread, shrank, decreased/increased activity. We hope and pray for good news today, and every day! Make it a great day everyone!