From My Heart, To Yours

Good evening to all of you exceptional and amazing people in my life. You have all shown time and time again just how truly important it is to live your life, to share your lives, to care for each other and to make sure that no person is ever alone. It’s been a long and hard journey, and unfortunately, it is not going to get any easier. It’s hard to accept, but acceptance and moving on is what I have come quite accustomed to.

I have been asked how do I do this? How do we do this every single day? It often brings up the topic if this is the real me. I assure you it is. I do assure you, however, that I do have my bad days. You cannot avoid them, but I do not broadcast them as they are not what defines my situation. If you and I talk on one of those days, you will get an idea of what I am talking about. You also have to keep in mind it isn’t something to place upon the entire world. It is my intention through all of this not to convey that this is easy by any stretch of the imagination, but to allow you to understand that life does not end with a cancer diagnosis or any obstacle big or small. Life goes on.

Do I ever embellish? No and never. It is impossible to do so. Cancer is too honest of a disease in life. It teaches us about so many different facets of the emotional spectrum that you cannot possibly accept anything other than pure and honest emotions. I do not get angry at life, nor do I feel I was dealt a bad hand. I have learned so much about the human experience that I cannot possibly consider this anything other than a blessing in disguise. I have met some of the most amazing people; I have traveled the country learning new things, loving new people, and sharing my amazing family with all of you. Death does indeed scare me, but I cannot sit in those thoughts for very long. I have too much I want to accomplish, too many people I want to help and meet, and too many life lessons I want to teach my sons.

If I pass, I hope my life goes on through my wife, children, family and friends. It is my job to leave behind a life filled with as much happiness, love, caring and respect that teaches my sons and allows my family to live as if I were still here. These posts are meant to portray who I am, not what cancer can do to someone.

I have lost far too many friends to this disease, but I get comfort in knowing how their lives carry on through the very same people who are hurting so severely. Their strength carries them through. Their smile, memories, and love are always going to shine. This is what I want to happen. I want a story of inspiration and hope, not agony and pain. I want to be remembered for love, friendship, and advocacy, not bitterness, resentment, and anger. By doing it this way, it becomes more accepting for whatever course this journey takes because I know my sons will remember their dad in a positive light, and their mother, my wife, will have lived with me as long as possible with the notion that I am still me; happy, loving, caring, and full of life. And of course for all of you that you remember through me what it’s like to smile through danger and despair, to laugh through heartaches and tears, and to enjoy every aspect of the human experience, good or bad, in order to live a life that is as full and complete as humanly possible with whatever small amount of time we have here before Heaven calls us home.

As for my current situation, it’s complicated. It brings everything into play. In regards to the most recent scans, the findings are very inconclusive. If I were to have received a normal CT with contrast instead of a PET/CT, the impressions from the report would have almost undoubtedly declared me NED. It’s why we did the PET. Even still, the findings from the PET (low uptake in two clavicular nodes, thymic region, and inferior left pleura) are too small and seemingly insignificant to truly come to any conclusion. The only way to be of any certainty is to wait and see with the next scan. If the spots grow in size or increase in uptake, it’s cancer. If not, it’s not cancer. What a game to play, no?

For Dr. Tap of MSKCC, his impressions were there was nothing serious enough to scream cancer or that jumped out at him. His approach was to wait and see, rescan in 6 weeks with another PET scan. We did discuss waiting to see how his radiology department reeds the scan. With cancer, anything and everything is suspicious on a scan and rightfully so. Our approach, if it changes anything, is to have someone look specifically at an angiosarcoma case with all of my HPI (history of prior illness), and determine if more needs to be done right now. Dr. Tap is a very knowledgeable physician, and he errs on the side of conservatism with treatments of new and path-finding capabilities. Without data, he doesn’t see the reason for the risk. I agree with him on those regards, but angiosarcoma is anything but normal.

My thoughts before Dr. Ravi’s consult synopses are simple. Although SUVs (standard uptake values – value given to the level of uptake on a PET scan) are generally not worrisome below 5.0, my case has proven otherwise. My previous, now excised through pneumonectomy left hilar tumor had a max SUV of 4.3. At the time of surgery, it’s SUV was 2.8. To me, this becomes significant when viewing my current remarks on my most recent PET scan. The SUV of the two clavicular nodes were 1.7 and 2.8. The SUV of the thymic region was 3.8. Finally, the SUV of the pleural finding was 3.1. We cannot determine what is going on. It most certainly could be post operative inflammatory changes, or it could be disease. What we do know is the likelihood of there being a recurrence now or later is very, very high. It just is, and that is a fact for my case. This leads into Dr. Ravi.

Dr. Ravi’s approach is always and will always be of the path-finder type for me and for all angiosarcoma patients. He has dedicated his work to treating and curing angiosarcoma. All of our current regimens against this disease are by the book and somewhat effective, but none are entirely curative in nature. With that said, out of the box thinking can and should be utilized. However, the approach is risky and can be very dangerous.

He recently did a presentation on immunotherapy, specifically recombinant interleukin-2 (rIL-2), and it’s efficacy against this very disease. As almost all signs point towards an environmental disease and most scientific signs point to AS genetic and protein over-expressions to be treatable by immunotherapy targeting agents, it seems logical to use our patient population in a study of some sort with this treatment. There are many hoops to jump through, but a drastic approach seems to be the most logical path at this time. He wants to somewhat treat it as a pre-clinical clinical trial. In other words, get some case studies to develop a compelling case for this approach. I will go into more detail later, especially when I know more as this is all very new. Case in point, he emailed his boss as I was sitting in the room about getting this started for us. In short, it would mostly be administered at a very high dose, an experimental procedure for insurance purposes (read expensive for us out of pocket), and I would have to live in Houston for awhile.

He said it best when he mentioned my family and the Christmas card we sent him. He looked at it and said it does me no good to sit around with coworkers patting him on the back, saying you did your best, that this patient made it seven/eight/etc. years more than expected. No. His goal is simple. He said he looks at our beautiful Christmas picture and that is what he wants to preserve and protect. His patients dying far before their time gives me no comfort when it is said we treated by the book and did the best we could. Don’t get me wrong, as I am sure my other doctors feel the same way, but Dr. Ravi is willing to take the risk. By doing the status quo, the odds are forever against me. Something needs to change, and I am healthy enough to do something drastic, or at least I think I am. I owe it to my family and fellow patients of AS to try something new and attempt to find a path for a better treatment.

We have by no means made a decision. I haven’t even discussed it in depth with anybody. I have a lot people working out the logistics and details, but please do not hesitate to give your input.

Please continue to pray for us. It isn’t an easy task to decide such a drastic approach, especially when we don’t even know what we are treating. However, do we do this now (with any treatment really), or do we wait for the odds of recurrence to come to fruition? I vote for the first option.

Thank you for supporting us, loving us, helping us spread awareness, and most importantly, for carrying us on your shoulders. It is incredible what you all have shown us and each other, and there is not a day that goes by that I do not stop to smile about what God has given me through all of you and yes, through this journey. I’ve learned to forgive easier, love stronger, live more, stress less, and share more. Live with no regrets and please protect each other. Everybody needs somebody sometimes. It is life, and let’s always remember to live it together with each other and not against each other. Through you all, I know what we are all capable of. Please do not forget what I am saying, and please take it to heart how truly amazing and special you are not only to myself, but to all whose lives you have entered. I love you all so very much. Thank you for loving me.

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5 Responses to From My Heart, To Yours

  1. BL says:

    I will repeat your own words back to you and say that “there is not a day that goes by that I do not stop to smile about what God has given me” by allowing me to become a friend to someone like you and how you and your family have welcomed me with open arms, allowing me to follow you and share your struggles and this journey. I can say with complete conviction that I have learned so many things through your writings that I would not have realized if you hadn’t expressed them. You, someone 23 years my junior! I should be teaching you things, not the other way around. I have learned through you and your writings quite a lot of things about myself and what I want in life. I agree with you that through the journey of being a cancer survivor, we’ve both “learned to forgive easier, love stronger, live more, stress less, and share more”. I pray the journey holds a long road ahead for both of us! Love you my friend, my OLB. 🙂 xxoo

  2. Cindi Dickey says:

    Dearest Ryan: At 54 years of age, I have learned a great deal from you, a man who is the same age as my younger son! (Similar to what BL says, above!). Through my mom’s two year battle with angiosarcoma, finding Angiosarcoma Awareness, Inc., and trying to offer what support I can to other members of our Facebook page, I have become a different person in that I appreciate what blessings I have, catch myself when I’m tempted to complain, and always try to express to my family and friends what they mean to me and how much I love them. I *tried* to do that before, but now it’s consistent. I am a better person for knowing you. You know as well as I that none of us is guaranteed the next minute, the next hour, the next day. And showing God’s love and helping one other and cherishing our blessings is what it’s all about. And you’ve got that down pat, my friend.

    As for the pre-clinical clinical trial, I’m a bit afraid for you and what it will do to you, but it also sounds like it should be done sooner than later, as is your instinct, too. :-/

    As you have so graciously offered to all of us, I will always be here if you ever need to vent, celebrate, cry, laugh. I hope that our paths will cross this year. 🙂

    Much love, prayers and only good wishes for you and your lovely family!

  3. Cory Sise says:

    Ryan as a physician I’ve been watching your case unfold and wondering what would I tell you if I was your physician. Would I look at this inconclusive PET and say watch and wait or would I go recommend an off-label, aggressive treatment that is linked to the hypothesis that this disease, like many, is rooted in the imbalance of our immune system? Now I add the perspective that I am a daughter whose mother is fighting this disease — all science and logic goes out the door! You add in your young age, your beautiful family and I see why Dr. Ravi took the approach he did.

    I don’t know what the right answer is for you, but I will give you the same advice I have given many patients over the years…there is no right or wrong answer in situations such as yours. If you are the type of patient that needs to know they died fighting, then you will likely chose to proceed ahead with treatment. My only word of caution is that when you fight the immune system with immunomodulating agents there can always be some unforeseen harm. I’m not referring to the typical, short-term chemo side effects, but rather the type of harm that comes when you’re trying to fix something and you end up breaking something else. As one of my patients said, “Dr. Sise you realize that we never really cure anything. We just trade one set of problems with one treatment for another set of new problems with the other treatment.”

    I have full faith that you and Dr. Ravi will assess the risk/benefit of the rIL-2 treatment and in the hearts of you and your family, you will come to the “right decision” for you. A decision that comes with a sense of peacefulness that transcends all the facts. I respect your bravery and willingness to embark on this new road.

  4. Renee Levasseur says:

    After I read your posts, I am at a loss for words. I have a hard time typing what is going on in my thoughts. Your writing is so fantastic. I pray for you and your family every night. You are right…we are not promised a single minute by God. It’s all God’s blessings and timing. You have made me look at life so differently. I don’t know if Lisa or Jan have told you.. I am the sister who was widowed at 37. After 10 yrs of marriage, my husband entered God’s Paradise. Yes life was so very sad for me and still is…but God has seen me through so much and I try to count my Blessings every day. Reading your posts…just reenforces my feelings and moves me along. I thank you so much for that. Your attitude is another of God’s gifts to you and all those around you. I thank you from the bottom of my heart. Your work here is not done yet. God Bless you and your family.

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