Throughout my life with what I have been taught and through self reflection, I always wanted my home to be a sanctuary. A place where no matter how hard a day has been or how much despair life has bestowed upon me, that once I step foot inside, by the shear thought of seeing my wife and sons, that all is not lost and life makes sense. It happens every time.
We leave our problems at the door, and just love each other. It’s like a tidal wave of grief, sadness, stress, anxiety just washes down from my shoulders through my body, and out the door. A weight is lifted. A new life and fight has begun. I have been blessed with an extremely formidable army of supporters in my life spearheaded and lead by my amazing and beautiful wife. God has blessed me beyond comprehension, and I strongly feel He continues to give me all of the tools and firepower necessary to slay this dragon. We beat it before. We will do it again. It’s great to be home. I missed my family dearly. It’s been a very grueling and exhausting week, and the plan still isn’t quite put together. My case is complicated, and the steps forward have to be carefully calculated by all parties. There is a very clear and present danger within my brain, and it needs to be addressed.
On a separate note, to help clarify things, I did have a clear scan 2 weeks ago with my PET/CT. Think of it as I have two fronts (Brain/CNS and the rest of my body) that I am facing and fighting, and every month or two I re-stage both fronts. The PET/CT scans are to address my body minus the brain. We had amazing news with that scan, and it was a huge relief. Unfortunately, it was quickly followed by a devastating MRI which revealed two new lesions. Although they are small, they are very worrisome. My emotional peaks and valleys are getting much more steep and are taking a much larger toll, but we will get through it.
The options are plenty, but the choice is complicated and stressful. We are going to do GammaKnife surgery again, and it is scheduled for next Friday, July 25. My medical team did everything in their power, from contacting heads and chiefs of departments to researching when certain people will be back from leave and vacation, but it just didn’t work out in the end. They don’t seem concerned, but they are not me. Normally, a week of waiting wouldn’t be that big of a deal.
However, the approach this new lesion has taken from nothing 4 weeks ago to 1.6cm today is unprecedented in my case. My specific disease has always been a slow grower, but this is definitely not slow. Waiting another week could mean another 25% or more increase in size (since it took only 4 weeks to get to this point), and possible other lesions arising.
The neurosurgeon and radiation oncologist both agree that whole brain radiation therapy (WBRT) should not be used right now. They feel the side effects, both short and long, are not worth what benefits we may get. With that said, Dr. Ravi had two approaches or paths once we knew their opinions. First, if we did GammaKnife (SRS) followed by WBRT, this would hopefully take care of the brain, and we wouldn’t have to be as selective with chemos that may or may not cross the blood-brain barrier (BBB). However, it seems the more complicated approach by treating locally in the brain, but not the brain as a whole.
Now begs the question – what chemos (and there aren’t many) could effectively cross the BBB while being highly effective against angiosarcoma? That is what Dr. Ravi is currently trying to figure out through research and consulting with other doctors. I will start chemo again, but the type, combination and regimen is unknown.
In the past, we have discussed immunotherapies and other experimental drugs to possibly help fight off a disease that may or may not be there. However, it is Dr. Ravi’s opinion that since we have active disease, we should go with something that has worked in the past. It is a theory that whatever chemo I was on before was either holding off the disease, or trying to eradicate it completely. Currently, it is between taxol (my last chemo) or gemcitabine/docetaxel (my second regimen). With either of these, we are considering adding another drug for better BBB penetration.
Long story short, I have GammaKnife next Friday, July 25 in Houston. I will have chemotherapy again, but we just don’t know what yet. Hopefully, we will have a decision made soon. I will keep you updated, as always!
From the depths of my heart and soul, thank you for being in my life and enduring, yes enduring, all of these trials and tribulations along with us. It is no easier for you to read about someone’s suffering than it is for someone to go through it. It’s emotional for us all, and thank you for your courage and dedication to stay by our side no matter what comes to fruition.
Life is what you make of it, so make it count each and every day. I have learned so much about life, love, friendship, patience, understanding, and commitment. I have learned many lessons I would not have otherwise. I have been given 5 years and counting of a life I love. I have been blessed with remarkable triumphs, and somehow a body that is capable of withstanding many deadly assaults.
I pray your life is as blessed as mine. I pray you see all the good you provide me and each other. I hope you know the beauty you possess, and the true power of prayer; the true strength in numbers; and the true meaning of love and selflessness. You have taught me to live. You have taught me to love. You have taught me that my family will be taken care of no matter my result. My family is everything to me, and that is an enormous burden you have lifted from my shoulders.
Now. We fight, and fight we shall.
I love you all so very much. You are everything to me, and we could not do this without you.