Good evening. I might as well write this, and get it over with. I’m exhausted and overwhelmed. It’s been an extremely long 5 years of battling this disease. Fatigue, stress, anxiety and nerves sure do compound over time. How many times does one have to be knocked down? Can I not just enjoy my life that I love? 5 years….and going. Something has to give eventually, right?
We’ve been through a lot, and unfortunately we aren’t any closer to being out of the woods. Dr. Rapson (my local oncologist here in Lansing) called me from the hospital. I asked her to call me when she found any news, and she did. First, there is no official report, but she decided to go and sit with the radiologist to view the MRI.
The spot I had radiosurgery on (Gamma Knife) is still there. This could mean many different things, especially since she couldn’t tell me exactly how it contrasted in the imaging – different contrasts mean different things – blood old and new, scar tissue, etc. It isn’t larger so that is a great thing.
The most troubling thing and one that is the most devastating is that there is a new spot near the previous one. Without an official report, I cannot get a true understanding of its description. Dr. Rapson said it is very small and indiscriminate, but worrisome. She seemed reserved about it, but said I should see my neurosurgeon soon.
This finding has many implications. First, it means the original spot most likely without a doubt is/was angiosarcoma. There was a glimmer of hope it was a more benign cavernoma, but this is proving to be false. It would have made a world of difference. Second, disease in the brain takes almost all clinical trials off of the table as well as many standard therapies due to the seemingly impenetrable blood-brain barrier. It leaves us with very few options if we cannot get stable or no disease from here on out. It’s very scary, and I am so very tired of all of this.
I was so very excited to go camping this Wednesday. This is crushing me. We still have a lot to figure out, but we are heartbroken right now. It just feels like I am dying slowly, and this disease is toying with me. You might think “slowly” is a good thing in order to get quality time in, but it is excruciating to continue to go through these gut-wrenching decisions on my life, time and time again; to continue to visualize my wife without me; to look at my sons and their innocence, only to dread what may be coming for them losing their father; to watch them play, laugh, learn, cry, and just want to be with me, knowing their worlds could shatter. It’s horrendous.
I play “death videos” in my head on what I want to say, what lessons I want to teach that I won’t be there for, what life memories will be made without me being around, how it is okay to go on with life without me…..this happens to us all going through this – we just never, ever want to have to do them. It is the most awful pain to force yourself to go through, but in order to get it done, I would rather do it sooner rather than later. However, in my mind, doing them admits that the end is death, sooner than later. It’s a whirlwind of emotions. So, yes, this delayed suffering is amazing to spend time with my family that God has given me, but this is the 5th time my mind and body have to go through this, and it’s not even a physical pain.
I am exhausted.
What now? We do what we have to in order to survive. At this point, I am not even sure what that means. I don’t have the final report yet, but it doesn’t sound promising as far as any chance at a good report. I’m also waiting to hear back from a few people in my life who are reviewing the images as well. I have had an appointment scheduled this Wednesday for a while with my neurosurgeon at MD Anderson, Dr. Lang. I kept that appointment for this very reason. I also overnighted my scan images to MD Anderson before knowing the results for the very same reason. Instead of camping Wednesday to Sunday (on a trip we have been looking forward to for so very long), I will be traveling to Houston for my decisions on my health, life and future. I am truly and utterly destroyed right now, and there isn’t much life can do. I’ll pick myself up as I have in the past. Adversity and despair are not strangers to my life, but neither are miracles, hope and courage. We will get through this.
As for silver linings and blessings, God has granted us some as always. It’s not wide spread. It’s very small. The other spot didn’t grow. I kept my appointment with my neurosurgeon still. The ducks are all in a row to get a plan going quickly. I am still alive and well, and physically able to do just as much as I have before. Hopefully, I should make it back home by Thursday or Friday to spend some time camping with my family still. We will get through this.
Please pray. Pray for guidance. Pray for control of this disease. Pray for an answer and a plan. Pray for safe travels and peace of mind. And pray for my family’s safety as they go camping without me. Please pray for an unremarkable PET scan in less then a month (beginning of July).
For now, we just need some time alone as a family of four. Thank you for continuing to love us all unconditionally. We have yet another battle to forge in this never-ending war.
We love you.