Good morning everyone. I hope you are all having an amazing week, and that you continuously can find something to smile about. This life is a wild ride, and we never know when we will get a break and a chance to catch up with what is going on so make the best of it. As for us, there is no breather in sight yet but for reasons somewhat unforeseen.
First and foremost, the most exciting aspect of this week’s trials and tribulations is that the PET/CT came back as clear.
If you want to read the official PET report: October 14, 2014 PET
This is very exciting news, but one that was very short-lived – if you can say it was celebrated at all. Please do not confuse any of this with us not being grateful and blessed for this amazing result, but had you noticed I did not use the term NED, it is because we were hit from left field. When that happens, I first shut down. I sulk for a bit. I confer with those closest about what to do, and we go into scheduling and planning. We are still in scheduling and planning mode.
With that said, the day of the scan went very smoothly. Rather, the morning went as smoothly as I anticipated. I had a very nice conversation with the technician who is fighting her own demon of ovarian cancer. After so many scans and so many years, we all start to become a big family and openly share our lives. Following a very routine scan, I had a nice, long conversation with a nurse turned amazing family friend about life, kids, etc. I was taking my time because I didn’t have much to do since I couldn’t be around my children until later that evening due to the radioactive nature of my PET injection, its half-life, and the rapidly reproducing and growing nature of my children’s normal cells. I felt good. I felt as if there was a shimmer of light, and things might calm down for a bit.
I was wrong.
The very moment I sat in the car of the parking garage, I received a phone call from Houston. It was the generic number for them, but it was a call I was expecting. However, the news I was not. I had no reason to expect it. The MRI was a done deal, or so it seemed. The week prior the one physician we could not meet with was our neurosurgeon, Dr. Lang. He was out of the country for the week so we would have to wait for his interpretation of the scan. I emailed his team at the beginning of this week for any sort of update, and this was the call I was expecting. We had no reason to believe anything would change as the report was read as just watch the large lesion. Our radiation oncologist, Dr. Li, was not overly concerned about it. Lastly, Dr. Ravi voiced no panic over the lesion in question.
However, Dr. Lang disagreed wholeheartedly with all parties involved. His nurse, Cheryl, was the one I spoke with and whom delivered this news. He strongly believes the large lesion progressed and wants to operate on it soon. They wanted to schedule the surgery right then and there, as I was just getting out of my PET scan sitting in my car. I still had no idea about the PET report, but here I am about to schedule open brain surgery. What. Just. Happened?!
I told her I would call her back later as I had many emails, texts, and phone calls to make.
I called my Houston oncologist, Dr. Ravi. He didn’t answer, but responded with a text a few minutes later wondering what was wrong and said he was in Germany. I informed him of the day that turned drastically south, and he sent out an email for Dr. Lang to contact him. I am unsure if they ever spoke, but receiving a text from Dr. Ravi that says “Don’t start the temodar. Go to surgery” says enough for me.
In summary, the PET report was clear, but I will now be having open brain surgery in just 2.5 weeks down in Houston. I have a consult with Dr. Lang and anesthesia as well as a mapping MRI on November 3, and the surgery is scheduled for November 4. I am planning on being down there, recovering, for most likely 10 days to be on the safe side. I know there are a lot of questions. I have a lot as well, but they will hopefully be answered as time moves forward. In the meantime, we have to scramble to get things taken care of and have all our affairs in order. I no longer have my flight benefits with my airline so our medical costs just went drastically up.
After 5+ years, not a single thing in regards to my case is getting easier. We are actually traveling more now. As a side note on all of this, we need help, and it takes a tremendous amount for me to admit this. Some amazing friends are getting things underway for us. If you have any inclination to help or have any ideas of your own, I put down my pride and humbly ask for any assistance. I will not bankrupt my family. I just cannot do that to them, and we need to get ahead of this before it’s too late. As for me, I have surprisingly not shed a tear over this yet. Denial? Possibly. Honestly, I think it’s just shell shock right now. Ask me how I’m doing on November 3 – the night before surgery. I may paint a different picture. I just want my family taken care of. It’s all I ever want. It’s all I really ever need to get by on this journey, but it is taking a toll on our family as of late. Please pray for peace, understanding, and continued faith.
This news is shocking and disheartening to say the least, but it doesn’t take away my “every day”. What do I mean by this? I can still walk. I can still take care of myself and help my wife raise our boys. I can still take Landon to preschool every day, and watch him learn and grow. I still have my precious one-on-one moments with Logan while Landon is at school. I can still exercise, and I feel great physically. It is not going to take me without a fight! Or should I say war since it’s been so long of a battle? Either way, I still have a strong will to live.
We are blessed beyond all measures in the grand scheme of things. After the shock, this surgery itself is a blessing. Not all brain tumors are operable. Not all brain tumors are in a relatively “safe” location as mine is. It is still a very serious surgery, and it most certainly doesn’t come without severe risks. However, it’s the course we are plotting, and we will do it together. One day at a time, and thankfully, we are not in this alone. Not by a long shot.
We thank you for your patience in all of this. We will update you as things unfold. If you have any questions, or any ideas on how to help, please let me know.
We love you all so very much.