Good evening everyone! As some of you know, this month has been trying for me. Ironically, the less aggressive chemo regimen has taken it’s toll on myself, both physically and emotionally. It has been the hardest month of my life. My wife and children have been amazing in adapting their lives around my side effects. My family has been by my side through the very worst of times. This journey is far from over, and I know I face many more trying times, but I promise I will not give up. I do not share many of my down days for several reasons.
I’m not a complainer, and life is too short to fill everyone’s lives with negative news on a daily basis. Please don’t take that as I do not care about you, your thoughts or that I don’t need you with us. We very much do! In a way, I am protecting you. I want you to know life doesn’t need to be defined by negative and painful news. This journey is that enough without filling these pages with issues that are out of our control. I need you for exactly what you are doing. I need positiveness and encouragement. I need stories of your lives and happy times. I need suggestions, recommendations, and articles that you come across concerning treatments, cancer itself, or survivor stories. Without any of that, I would not make it. I would NOT make it without your support. In short, I have been in a lot of pain lately (emotionally and physically), and I try my very best to get through it. On the positive side, I do not hold it in. I do have a core group, besides my wife and children, that I do share what I am going through with. I only say that because I do not want you to think I am keeping things completely to myself. It would be very unhealthy and damaging to our fight to go about life that way.
Another reason I withhold the negatives is because I do not want pity. I do not want you to feel sad for us. I want you to know my life is filled with joy and happiness ALL the time. I just have obstacles to get through from time to time. We all have our problems to get through. Honestly, mine are no different. We will persevere. We will get through what we have to. I will endure anything if it means I get one more day with my beautiful wife and children; one more day to share my life with you; one more day to live. It won’t always be easy. We both know that. Nobody’s life will be. We have each other to lean on, and I couldn’t do it without you. With that said, I apologize for the delay in informing you of this week. Our appointments and plans have changed a little. I will go over the new schedule at the end. In the meantime, my Aunt Jodi was kind enough to summarize what we went through and learned this week. I am still too exhausted to write a detailed report. This is what our week entailed:
We went to see Dr Ravi at MD Anderson. He has come highly recommended by many online patients with sarcoma. We know this is very rare but to put it in perspective; sarcoma is only 0.1% of cancer and angiosarcoma is 0.1% of sarcoma. Dr Ravi said that 50% of his patients have a form of angiosarcoma, which in this very rare disease gives him the most first hand experience available. Not only does he have the expertise but he has a great personality that Ryan seemed to identify well with. He was very good at explaining the issues at hand so we could relate without talking down to us. Here is a summary of the key points we discussed.
The first concept to understand regarding the personality of angiosarcoma is the multifocality of tumor sites. Dr Ravi used the analogy of looking out the window of an airplane. When you look out the window of the plane all you see are the big cities. You know there are farm houses out there even though you can’t see them. With angiosarcoma the CT shows the larger collections of cells. We know there are also smaller collections of cells even though we can’t see them. This means we must assume there are more sites present and treat the entire body.
The other characteristic that makes angiosarcoma unique is it’s durability. There are 7 steps for a cancer to metastasize.
1) develop the ability to be mobile
2) travel to a blood vessel
3) develop the ability to squeeze through the lining of the blood vessel
4) travel through the blood (described as a small town guy entering the autobahn)
5) attach to the wall of the blood vessel at another site
6) move the rough the wall and enter another site
7) develop new blood vessels to this new site to stay alive and grow.
In general many cancer cells do not survive this journey so it is really not that easy to metastasize. However, angiosarcoma cells originate from the wall of the blood vessels and therefore skips many of these steps. They grew up on the side of the autobahn so tend to survive better.
As a result of these differences between cancer in general and angiosarcoma, primary treatment needs to be systemic as opposed to focal (surgery or proton therapy). Chemotherapy is used to reduce the size of the primary site, which we use as a marker for what we hope is also happening to the scattered “farmhouses”. If we can reduce the size enough then surgery may become an option eventually, but this would need to be followed up with more chemotherapy.
The other problem with angiosarcoma is it’s durability. It tends to respond well to chemotherapy but tends to not continue to respond in the long run. The reason for this he related to Darwinism (survival of the fittest) at it’s best. The cells replicate very quickly and as a result evolve through each generation of cells to select for the cells resistant to the chemo. This means we need to be very vigilant in monitoring the effects of each round of chemo, do not back off, and make changes as we progress. He recommends a repeat CT after every 2 cycles of chemo (every 6 weeks). Dr Ravi is very interested in any minute changes and prefers to have the scans done at MD Anderson followed by our reevaluation with him every 6 weeks. At each of these appointments he will make the appropriate adjustments to Ryan,s treatment.
Dr Ravi also spent time discussing the quality of life issues. He agreed that our primary goal is quantity and that is where the medical decisions are going to focus. However, he stressed the importance of making the most of every day. His first recommendation was to not waste time rehashing the past. It is easy to wonder if the decisions made this far were incorrect and may have had a negative impact on what is happening. He said you should use the experiences for learning purposes only and not waste energy on things you can not change. In the same sense we should not worry about what will happen in the future. It is his job to follow the progress, keep up on literature and decide what the next treatment will be. It is ok to read and be informed but try not to become obsessed with the options. He admitted it is easy for him to say this but difficult to place into reality. He knows this from personal experience because he was once in our chair, when he sat with his brother who also had sarcoma. The other lifestyle change he recommend is to outsource. Don’t wast time doing the little things when you could spend that time doing what you love like spending time with family and friends. He said to hire someone to cut your lawn unless you have a burning love for this (we laughed because Ryan kinda does).
As far as the CT result are concerned, we did get some positive news it appears. We will still remain reserved until Dr. Ravi gives his input. However, it appears as if this chemo regimen is working in our favor. The tumor appears to have shrunk an appreciable amount.
We also had a follow up appointment with Dr Chang, the cardiothoracic surgeon at U of M today. We discussed the CT results from this past Monday with him also. He agrees that there has been an interval decrease in the size that is statistically significant. Once again, this means the current chemo (which is truly been very challenging for Ryan with the worse side effects yet) is having an effect.
Proton therapy and surgery have both been placed in our back pockets for now. They will be reconsidered at each re-eval and likely will play a significant role in the future when the timing is optimum. Dr Ravi will be monitoring and measuring the response every 6 weeks and if the conditions are optimal he will recommend surgery, and Dr Chang is willing to do the surgery if it is appropriate timing.
I honestly have the most wonderful support group imaginable. I have been very blessed, and God truly is helping and looking after us. As for the coming weeks, our plan has obviously changed. I will start round 7 this upcoming Monday (October 1). It will be the same chemo regimen I have been doing this last month and a half. Please pray my side effects are minimal and the tumor continues to shrink. We will travel back to MD Anderson to consult with Dr. Ravi after the 8th round of chemo (in 6 weeks). Proton therapy and surgery are obviously on hold. We will continue to send scans and reports to Mayo and Memorial Sloan Kettering in the interim to keep them on the team, but Dr. Ravi (with his expertise in angiosarcoma) will be the team leader and directing treatment through Dr. Rapson (my local oncologist).
Thank you for your love, support, kindness, understanding and generosity. We have a challenge, but we always knew that. We all live not knowing when life on this Earth will end. In a way, the rarity that causes me not to get a prognosis is a blessing. This means I am back to life and not knowing exactly when it will end. Granted, the odds are against us, but it doesn’t matter. All that matters is the task at hand, and we will face this adversity head on with full force. We will beat this together. I truly love you all. I love what you do for us. And I love how much you are living your lives, enjoying your loved ones, and sharing your hearts with me. At times this is surreal, but I truly enjoy being in your company and having you with me.
My beautiful wife and I will be taking a retreat this weekend in Holland, MI. Bluebird Cancer Retreat is hosting a couples weekend for cancer patients and their loved ones. It’s on Lake Michigan, and the weather couldn’t be more perfect. They pay for everything and pamper us couples for 3 days. We get to share our stories, our lives, and our fears. We get to embrace each other with our love and support. We get to share life and have a stress free weekend. Andrea, above anybody else, needs this weekend more than anything. We will miss our boys dearly, but we will be so happy just in each others arms, alone and without interruption. Have a wonderful weekend! We love you all!