Here's what we know now.
Much like a significant character in Harry Potter, speaking the name of the bad guy only makes him stronger. So, since our main desire is do the opposite, we really don’t need to name this cancer here.
We can leave it to the pros to know its name because they are the ones with the high tech weapons. They have starvation techniques, heavy-duty poison and relentless precision laser beams to take this thing down. So with that, we can tell you the most important stuff.
Yesterday, Rocco saw his surgeon 10 days post op, had 35 staples removed and was given the OK for his chemo and radiation treatments to begin ASAP.
Your prayers and healing energy did that.
This means he’s strong enough to suit up for battle sooner rather than later.
In anticipation of the specific pathology (still we wait for that) the chemo pill called Tamadar is ready to arrive any day. Ahead of schedule and is well tolerated with anti nausea meds. Radiology and Chemo education classes are complete (with great note taking by our treasured friend Annie Fitzpatrick).
The course of treatment is pretty close to being set now. Small tweaks will be based on Rocco’s specific biomarkers, showing what those nasty cells will be most responsive to. 6 weeks of low full brain radiation will be given once five days a week and chemo every day. Proton radiation is not going to be any more effective. With those specific markers, our second opinion is waiting and will be brought in for additional consult with the current team. We have met most of Rocco’s team and they are all stellar! After the 6 weeks he gets a month off and begins maintenance therapies and that include some newly approved technology and expertise.
Today Rocco got his mask made for the precision radiology treatments along with a CT scan. Thursday another MRI with cast will overlap the CT in all computer calculations to make sure the radiation is as affective as possible on these cancer cells while doing as little damage to the normal brain tissue as possible.
What will make the treatments more affective is getting his body into Ketosis. Studies show that maintaining no more than 20 carbs a day with a high fat, high protein diet, gives the chemo and radiation a bigger advantage. Our dietitian has given us great resources and recipes to use. Those of you who have already offered to help me with these carefully prepped meals, thank you! We are so grateful because I can spend less time in the kitchen and more time being with him and focusing on the right amount of exercise, rest and fun to build into our days.
Rocco’s happiness is important to his healing. He’s not too happy with all of this. The reality is that he is going from a daily speed of 150 miles an hour on the autobahn to 2 miles an hour on a sidewalk and that is stressing him as all of this is still so new. It is new to you too and it is hard to process. Rocco is his happiest when he is teaching, giving and connecting with others all day, every day. Staying busy can do wonders. Doc’s all agree! But the challenge is not getting down while dealing with fatigue.
For now, it is one foot in front of the other.
Keep up all of the good wonderful love pouring his way.
We are sincerely and profoundly lifted by it.
Love,
Denise
Comments (20)
Denise and Rocco, I am sending love & my very best wishes for best possible outcome.
Thanks for the update! That all makes good sense to me. Rocco- I can imagine how annoying it must be to be playing a shaker when your actually the lead guitar player- but... the shaker has a job to do too. He must keep it going because slow and steady keeps the song moving. I know that's a crappy metaphor but it's what I've got tonight. We're packing to go do a big show on Thursday in Green Bay and we're here thinking of you guys and sending our love and voices! Stay strong and stay wild.
While I don't like the content of the update, I so appreciate knowing what the status is. Thank you! I'm keeping you all in my thoughts and prayers, and I'm sending lots of positive energy your way!
Rocco Hang in there. You will get through this! My thoughts and prayers are with you. When you hear that little person in your head begin to get down and frustrated, take a pause - and laugh. Laughter is a powerful weapon against the 'nasty things'!
Thank you for the update. This is a long and arduous road. But we know that Rocco will continue to march forward and reach the finish line cancer-free, as many others of our friends have done. He remains in our thoughts, as do you Denise and Kendall. Stay hopeful and strong!! Love Terry
Thank You so much for the information and updates. So so grateful for them. Please don't hesitate to ask for anything.
Someone here mentioned the healing power of laughter... and Rocco knows how to laugh. If he needs to be reminded that he knows, well, we all need that sometimes! But it's there. If you forget, he can show you. ;-) Thanks for the update and helping us to share the journey.
Dear Denise and Rocco, thank you for the update and sharing your journey with us. I was trying to share with my Mom in-law, who Rocco is, and how much he means to me... a difficult task when the vein runs so deep. The words "beacon of light" came out, which has been said a thousand times on this sight alone, and while not original, very true. It then occurred to me that "beacon" implies a light moving outward, and I wondered if Rocco feels his own light? I think that's a tough one for humans in general. Rocco, yours is a healing light. It brings clarity, calm, and a way forward. Insight that brings forgiveness and allows wisdom to walk in the world. It radiates through people, through action, at once practical and transformative. So while you are adjusting to this moment, focusing the light within, then perhaps all of us on the outside are mirrors, shining the light you give us, back to you. That' s a lot of light coming at you, oh Master of Reflection - that's one of your titles, in case you didn't know : ) My Love to you both, André
Dear Denise, Thanks for the very clear update. I am SO with you in this walk, dear Rocco. And yes, laughter is a terrific medicine. Also, my dear predecessor at UW, when asked how she was, would respond "hopeful". That always stays with me....."hopeful". With fulness of love, Karen Ryker
I will be happy to send some terrible jokes if Rocco needs a laugh. In the meantime, thanks for the detailed update, and I'm sending ever more good, healing, strengthening thoughts your way!
OK. Here we go: WHAT'S IT CALLED WHEN YOU RUN BEHIND A CAR? ....................................................................................................................................................exhausted WHAT IS TIME CALLED IN THE SUMMER?..........................................................................................................................................................................summertime Are you laughing? Rocco man, above all, you have taught me that what you put out, happens. You teach, "Love." You have said, think of loving when you walk into a room. Project love! Nothing can withstand the force of love! Blast through the obstruction as you send your love outward....from your core. That's how you have lifted me. We all blast love from our core so it can lift you. What goes around, comes around. Be still. Here us. See us. We are right there with you. Dear man....Healthward Bound.
Denise, you sound like such an amazing person. You and Rocco are so lucky to have each other. I don't know you but feel I do a little. Slowing down is hard. A little grief is ok. But the hope and a constant reaching toward the light of recovery is a balance. I hope that you and Rocco are lifted by our hope too. Much love to you both. --Cory
Thanks for the update! I hope your mask fitting goes well, and you can decorate the mask with feathers and bright colors to help direct the radiation to where it is needed and give yourself the fun of knowing your mask is helping protect the wonderful, stellar brain inside your head. May the combination of the chemo and radiation with your ketosis knock this invader and give you peace and love and wonder! Lots of love, Anne
Lots of love and healing white light coming your way...The strength and love that you two share will last for years...I pray for the day when you will both look back at this time and laugh and say " No way were we going to let that interfere with the life we have ahead of us" God speed for a complete recovery and many bright years ahead...Rocco, just think of this as an irritant on your journey through life that you will leave in the past.....With LOVE Joyce Korbin
Sending our love, good thoughts and prayers to all of you....from all of us at CAM.
Rocco, Denise & Kendall - You are all so loved by so many that your full recovery is the only possible outcome, Rocco. I wish I lived closer so I could cook for you. I've been on a low carb high fat diet for years...unless I forget to NOT eat a whole pie. 😨 Now imagine that the pie is blackberry, and I'm eating it with my hands, in an Ambien stuper, sitting on the kitchen floor, wearing a crown...and Hello Kitty slippers. Nothing else. 👀 If that doesn't make you laugh, we have bigger things to worry about! Lots of love, powerful prayers and complete confidence in you. 💝 Your silly friend, Jeannie
Thank you for this update, Denise. Rocco is lucky to have you with him every step of the way. You are wonderful. One foot in front of the other. What an great coincidence that a man with such a deep understanding of emotion is faced with an important, recovery-dependent task of fostering happiness in this time... if anyone can do that, it's zen master Rocco. Sending all my love. Your friend, Jen
Love you Rocco!! Denise thank you for the update. Your love for each other is a beautiful thing. Sending love and prayers always❤️❤️
You are in my thoughts daily- I know that you are surrounded by a vast, caring community- but please count me among them and let me know if there is anything at all I can do to help- food (carefully prepared), rides, visits, really lousy puns- anything at all Love, Susan Winters