Update & Movement Forward!
Today was a very long day. Kimmie met us early this morning at the condo and she and Jason played the audio of the talk the surgeon had with them immediately after the surgery. I had not really been ready to hear it, but since I knew we'd be hearing lots of new information today, I figured I needed to. After the recording we debriefed on how they were feeling at the time, what happened immediately after (I was still waking up in recovery while this had been going on), and how they felt about knowing things that I did not at the time. And then it was time to get to our first appointment of the day.
We arrived for our 8:45 appointment and quickly realized that MDA was on day 2 of their transition to the new medical records system, which was delaying everything all day. No problem, just led to a more exciting day. Our first appointment was with the head of neuro-oncology and his team, who will be coordinating the follow-up treatment. During that process there was one research group after another signing us up for every study we qualify for. It was actually a whole lot of fun! That was 4 hours of meeting folks & learning about the chemo pill and updating records. We had 45 minutes to grab some quick lunch and then we got lost trying to find radiology for the 2pm appointment. There we met the radiology team and signed up for yet another study (I'm now in 7 research and 1 clinical trial), we are waiting to hear if we will have proton or photon radiation (yay for random assignment!). We also learned that this week will involve the radiology & oncology team designing and prepping for the treatment to start. That process will take 7-10 days. Once that was done, around 3:30 pm, we went to the follow up with the surgical team so that they could see that I am doing well. I got my sutures removed and I can wash my hair tomorrow! Lastly, I had some labs done and we were finally able to leave at 5:30. It was a long day.
At the surgical appointment we were able to get the pathology report, a good look at the scan from after the surgery, and a good idea of what we are going to be up against. The tumor was a Glioblastoma (GBM), one of over 400+ types of brain cancer. Don't Google it. It will scare you. Let me tell you what the wonderful people at MDA are doing and what my outlook is. GBM is a tumor that is completely random. We do not know how it starts but we do know several other things: 1) it's a white collar, educated man's disease but women get it too; 2) it's recurring and without treatment it will grow back in 3 months; 3) it does not metastasize, it will grow back in the same region every single time and will not jump elsewhere in my body; 4) the place where my tumor is growing is apparently not that crucial to who I am 5) the best survival rates are in women in their 40's who are strong, healthy, and fighters.
So...what do we do about it? We start radiation & chemo in 7-10 days. We do 5 treatments per week for 6 full weeks at MDA. We take off 4-6 weeks, then we are back at MDA every 4 weeks for scans. We watch. We know where it will be if it comes back. If we see it, we zap it. If zapping it doesn't work, we open up my now easily accessed cavity and remove rogue cells and then we zap again. The best news I heard today is that if I am willing to do this one day at a time and wait, watch, treat, we can keep this at bay for a long time. I was told today that there is a lab here where they have made major strides toward a cure for GBM, and they are now working on multiple methods (viral attack on cancer cells; stem cell delivery to cancer cells of toxin that offs them). If I will go through the treatment and keep the cells in check, like so many others have here (many for 20 years or more), there is a cure in sight.
Comments (18)
You. Are. Amazing... but then again I have known that for a long damn time.
This is such a wonderful update. You have a great medical and family team. I have this image of you logging on to MDA's Sona to sign up for all of these trials. If anyone can kick this, it's you. Lin
What a day, stay strong and know you are loved!
There you go being Bad Ass again...I love that you keep us updated...it just reaffirms how strong you really are... So many people love and care about you...we are all sending many positive vibes your way...
Shannon--woman, in her forties and willing to fight. You will do it. I so appreciate you explanation. And as long as you are fighting, I will keep my Shannon candles going. We think of you every day. You, too, Jason. In fact, we need to think of the candle as the Shannon and Jason candle.
How wonderful to hear this good news- thank you for taking the time to update us. So happy that you are receiving the very best care- sending much love your way!
I am so excited that you are in research and clinical trials -- and the prospective treatment plan and outcome is much better than I feared! You are a perfect candidate for success. I'm sure there will be dark days when, like many of my patients have explained to me, you just want to put a bag over your head - but take deep breaths and count and suddenly the sun comes out again. You are a Super Star -- You can control this!!! Love you tons.
Love you, Superwoman!!!
You go, Warrior Woman!
Thanks for sharing your journey with everyone who loves and admires you so much. Stay strong, sweet lady and your prayer warriors have got you covered!
That is outstanding news. With a kickass attitude, a chance to explore experimental design from the inside and unlimited support from friends and family ... it is a can't miss combination.
Hi Shannon, Love to hear that your struggles and Jason's are paying off. Keep your chin up and keep your heart open to a change of mind toward things unknown til now. Love you. Dave and Lynne Rinaldo
All the best to you, Dr. Rinaldo. You're a warrior with every sense of the word. Love you <3
Yea for a plan in place! I like that...it makes the one day at a time thing easier to do. Love you my friend!
Sounds incredibly encouraging! You can do this!!
And just remember you have never been the average anything...........you are an amazing outlier in the best sense of the word. You are in my heart and thoughts everyday.
Shannon, Not to say that this is about me (really?), I am so relieved to hear all this coming from you. Let me first say that I am so very sorry you and your family have had to deal with this. I was so hoping to hear that there was no cancer and that this would be a one stop shop, but if anyone can beat this, you can. I remember when the doctors told us that Brennan would not wake up. Hardest news to process ever, but it was reality. Unlike you, he did not have another chance, but as long as you are on top of the earth, there is such hope. (We just past the third anniversary of that fateful day). Jason told me he had never seen anyone with such resiliency, (talking about me continuing school after B's death), but he can now update that status. You are amazing, sweet girl! I read so much good news about so many progresses in nearly every disease corridor. Hey, I will be living till I'm 120, probably (if Joe or my kids don't kill me first,lol) You have the best, most positive attitude I have heard coming out of surgery from such a short time ago. You have so many people who love you and that energy is channeled right to your recovery efforts. Together with the best medical treatment in the world, you are going to be ok. I always wanted to know you better and was so afraid that I would lose touch with one of the nicest, funniest, smartest people I had ever met, but I feel that I am now woven into the fabric of your being. You have made sure that I will never lose touch with you or your family. Thank you for your posts, and thank you for including me in your life.
Well, OK. Sounds like you are taking it all in. Lots to do & think about. Keep your positive outlook & stay healthy. I know this is scary but you have lots of support & love coming your way. I will continue to pray for all involved. Love you.