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.