Yesterday was a whirlwind of appointments and we were at Stanford from 9:30 am to 5:30 pm yesterday. We started with my full PET CT in the morning, followed by an impromptu CT of just my c-spine, then a meeting with the neuro oncologist to discuss options for treating my spinal lesion on my C3 vertebrae, a blood panel and then a meeting with the ENT to scope my airway and determine what we need to do. After all of that, my oncologist came in and we discussed things further with the ENT docs until we left the hospital.
I have to admit, I am really impressed with the amount of coordination between all the doctors I've seen thus far. They all connected yesterday, talked about options for my plan of attack, called other docs and other sources and references and got additional opinions - all while Mike and I were in the room. They included us actively in the discussion and didn't dismiss any of my questions and talked us through the options. I felt very good about the care I'm receiving there when we left the hospital yesterday, and so did Mike.
It's hard to pick a place to start - so I'll start with the little bit of sunshine we received yesterday. The preliminary read of my PET CT told us that the metastasis has not spread to any other vital organs - no liver, brain, or lung involvement - and there is just one other spot on the bone in my left thigh bone. Thus - most of the mets are in the areas we've already identified thankfully. Mike and I cried with relief and joy to receive this news. We truly are thankful for all the prayers and positive energy sent our way. Thank you all - so, so much. That said, we're still waiting for the "official" read of the scan to get all the final details regarding size of the lesion on my thigh and other official details of what's there currently, but we're optimistic ... and so very, very grateful for this news. This news changes my odds and my oncologist was much more optimistic about my prognosis yesterday than he was on Monday - which was a relief as well. We're talking more time - more time for me to be mom, wife, sister, daughter, niece and friend. More time to be me.
That said, the first critical steps we need to take are to secure my airway since the lesion on my cricoid cartilage has narrowed my airway to about half the size it needs to be. The concern is that any additional narrowing will put me in a very dangerous situation. THUS ... the ENT docs recommend a tracheotomy procedure this week. Additionally, because the airway is narrow, they don't think I can be intubated safely so the operation can be done while I'm asleep - which means I will have to be awake when they do it. Needless to say - I'm having lots of anxiety about that. After they get the trach in, they'll put me under completely and do a biopsy on my cricoid and we'll finally be able to get a picture of what we're dealing with. If you don't know what a tracheotomy is - feel free to google it - but be prepared. I'm essentially getting a pipe put down my airway. The pipe will be in for a few months until it's safe to remove. But there will always be the chance it will need to be put back in if the lesion ever returns and threatens my airway again. As far as treating the lesion, that is still up in the air. The initial plan is to attack it with chemo - a more systemic approach - and hope that is shrinks. If it doesn't, surgery to remove what they can and radiation will be the next option. I'm also pushing them to see if using the Cyberknife technology is an option. This is a very targeted radiation therapy. The ENT docs said they've never seen it done before in this area, but to me that doesn't meant can't be done. So we'll see what they say. The issue with the cricoid cartilage piece is that my voice box sits on top of it - so it's in a precarious position. So I'm hopeful we can get it treated with very minimal impact to surrounding tissue.
|trach in neck|
The next lesion of equal importance is my C3 vertebrae in my spine - the one threatening my spinal cord and spine stability. The left side of the vertebrae is pretty covered with the lesion, so it's pretty compromised. The neuro oncologist wants to protect the stability I do have right now until we get through the procedure to tackle the lesion. For that, we're looking into the Cyberknife procedure - a very targeted radiation treatment that will limit impact to surrounding tissue. Radiation to bone mets is supposed to be very good and supposed to prohibit any future return of growth in that area, which would be great since this is on my spine. So I'm in a neck brace as of today through 6 weeks after the Cyberknife procedure (which isn't scheduled just yet). Sexy right?
As an aside - we had to wait for the neuro oncologist for about 45 minutes in the exam room because he was squeezing us in between other patients. While we were waiting, I realized it was the first time in a few days that Mike and I had a private moment just to ourselves that wasn't in bed falling asleep. I asked him if he wanted to make-out since we had some privacy. Might as well take advantage of the time right? :)
Back on track.
After these two procedures, we'll move into chemo - the systemic treatment to shrink the lesions. We don't know if we can use radiation on the lesion on my left thigh bone yet. We haven't had that conversation with my oncologist. But we will, once we get through these two critical steps. Am I scared? Heck yeah. Awake for an operation? Scary as hell. But it's better than suffocating and having this procedure done as an emergency. Better to be proactive. Am I worried about how the lesions will respond to chemo and subsequent hormone therapy? Definitely. And I'm going to constantly carry the concern about the threat to my airway and the potential for a permanent tracheotomy.
We made it home around 7 pm last night. Camden was avoiding his dinner and Nicholas was napping in the swing. My mom was waiting to have dinner with us, so we all sat down with Cam. And after dinner, we had a dance party. We turned up the music, danced with Cam and each other and just enjoyed being a family. Even Nicholas got in on the dance moves. And after everyone was asleep and Mike and I were turning in for bed - we got on our knees and gave a million thanks for this little bit of sunshine in the middle of a storm.
I feel better today than I did on Monday. More optimistic about my prognosis. While this is still going to be a life-long battle, with intervals of scans and treatment in between intervals of regular life - it's life. It's my life. And I'm sure as hell not going to let go of it.