Consultation Synopsis and CT Results

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:

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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.

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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!

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10 Responses to Consultation Synopsis and CT Results

  1. Barb says:

    Ryan I hope you and Andrea (a/k/a Amanda) have, as Zach would say, a GREAT & AMAZING weekend at your retreat!! Over 400 people came to the spaghetti dinner fundraiser for him last week. He continues to do well. He says hello and that you are “brothers fighting cancer”. They have “Great & Amazing” tshirts and I’m going to send you one. I am also going to order a Team Humphrey one for Zach! As always, you’re in my prayers. We will be kind of near you guys this weekend. Taking my mother-in-law to Grand Rapids to see the Meijer Gardens and Sculpture Park. Looking forward to it!! I hope you guys have a great experience and enjoy your couple time. Well deserved! xxoo BL

  2. Donna Holmes says:

    Press on dear one! Many things about tomorrow we don’t seem to understand. But, we know who holds tomorrow and we know who holds our hand. Have a wonderful weekend with Andrea! Enjoy the season of Fall in Michigan. It is one of the most beautiful places I’ve ever known.

  3. Katie W says:

    Ryan – thank you (and your Aunt) for the update! We are so thankful that you have found an amazing team of Doctors who are coming up with the best solutions for you. I just want you to know, that at least for me, it is OK to show us some of your down days too. You are such an inspiration, but if getting out some of those thoughts on paper helps you – then we can all definitely help you with that! But that is totally your decision! We are always thinking and praying for you. I hope you and Andrea have a fantastic away and soak up every minute together! You guys deserve this weekend away – at the very least!
    Constantly praying for you.

  4. Leann says:

    One of my friends at Bible Study today said this was her favorite verse when she was
    helping a family member during his fight with cancer…..
    You will keep in perfect peace all who trust in you, whose thoughts are fixed on you!
    Isaiah 26:3
    We prayed for you and Andi this afternoon.
    May God bless you as you take time out at this special retreat.
    Blessings,
    Leann

  5. Patrice says:

    ((Ryan))…I am so glad you let Aunt Jodi do the reiterating of the report from Dr. Ravi. The doctor made a wonderful point when he said to concentrate on the simple things and joys of your life each and every day. Let those that love and surround you do the things that they can to enable you to spend your time doing all the things that make you feel wonderful in every which way…I know your lovely wife and two precious boys are on the top of that list undoubtedly!! The more you fill your time with pure love, happiness, positiveness and wonderful thoughts and memories of all those blessings in your life…the easier your body can rest and continue to persevere. I’m certainly in no way minimizing what you are enduring, I just simply want you to pamper yourself to the fullest and fill your every moments with goodness… so that your body can do it’s absolute best for you and keep on keeping on! I am so excited for both you and Andrea to have the opportunity to enjoy God’s country on Lake Michigan for the weekend. I know you both will find absolute PEACE in each others arms as you soak up all the natural beauty life has to offer us. I hope your weekend is nothing short of miraculous in so many ways. <3 I continue to think of you all every single day and pray for constant love, support and wellness. I want to share this quote with you Ryan…. you immediately came to my mind when I read this…

    β€œWhen everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” ~ Henry Ford~

    YOU can do this Ryan!! Sending you a big hug filled with love and prayers!!!

    May God Bless You and continue to hold your hand every step of the way.

    Much love!

  6. Jodi, thank you for the thorough and very well-written explanation. I learned a lot reading what you wrote. And Ryan, I’m so glad to hear that you and Andrea will be away on a couples retreat this weekend. I can’t imagine anything better for the two of you right now. As the Dr. said, “live in the moment” while you’re there. Don’t think about the past, don’t think about the future. Just think about “now” and learn, share and enjoy your time away.

    Something Jodi wrote struck me. The part about outsourcing. What is it that you truly hate doing every week? Okay, so it sounds like you like to cut your grass. But do you hate getting gas in your car? (I do!) Find a friend who lives near you that can come to your house, drive your car to the gas station, fill it up for you, and bring it back to your driveway. (Any of Ryan’s local Michigan friends reading this? Listen up!) The thought of having a perpetually gassed up car sounds like heaven to me. πŸ™‚ When our friend was sick and his wife was working round the clock, I did their grocery shopping for them once a week. It got to the point where I knew exactly the foods they ate and exactly where everything went in their house. Maybe a friend who lives near by (who might be reading this!) can shop for you while they’re shopping for themselves. That’s what I did and I know it helped my friends immensely. If I lived in Michigan I’d do it for you – AND get your gas for you, too! Laundry? Bed making? Vacuuming? These are all things your friends can help with. People don’t realize, but sometimes its the little things that help the most. Again, if I lived closer, I’d come every weekend to do a little something for you. If there’s something I can help you with long distance, let me know. I’d be glad to help.

    Anyway, continued good thoughts being sent your way. Stay strong!

    xx
    Lisa

  7. Regan says:

    Thinking of you Ryan

    Your family is in our prayers

    Love,
    Regan

  8. carol burnham says:

    You are in our thoughts. Keep strong.

  9. carol burnham says:

    You are in our thoughts.

  10. Donna Holmes says:

    Thoughts for you:
    never pass up the opportunity to go for a joyride
    allow the experience of fresh air and the wind in your face to be pure Ecstasy
    take naps
    stretch before rising
    thrive on attention and let people touch you
    on wam days, stop to lie on your back on the grass
    when you’re happy, dance around and “wag” your entire body
    if what you want lies buried, dig until you find it
    falling down is part of LIFE
    getting back up is LIVING
    Have a great weekend! Lie on your back in the grass and watch the clouds!

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