Okay, proton therapy is off the table. But that's okay. (Sorry for my "freak out" earlier. We spoke with the doctor in depth just now and he explained decision not to do proton radiation. Your prayers for us worked because I didn't cry at all during that phone call! It even made sense.)
So, Tuesday's the day! Lorelei will begin IMRT radiation at Integris using photons (X-rays) instead. Surprisingly, the damage to her heart and lungs will be less with IMRT photons than with proton therapy. (The new path of treatment means not such good news for breast tissue but that's much less important to one's daily functioning than being able to breathe.)
They will be shooting photons into Lorelei from nine different angles. How do they come up with this stuff? She'll receive 30 gray over the entire original field and finish up to 40 gray in the resistant active spots. It will take about a month of daily treatment.
The mask Lorelei will wear during radiation is very confining (by design) and requires she breathe through her nose only. This was of concern to Lorelei because nose breathing is sometimes not possible. We asked Dr. Confer what could be done if she's congested. He said we could use Afrin. Or straws. (Yes, he was kidding. Dr. Confer is awesome like that.) Then we proceeded to discuss the merits of the particular straws at our avail. McDonalds straws are bigger in diameter. They won. It was nice to have a little levity in what was otherwise a pretty heavy conversation.
Partially contributing to my panic earlier today was my fear that the field of cancer had grown between Monday and Friday leading to the decision to axe proton therapy. Dr. Confer gave me some relief about that. The CT taken Friday May 3 did not show the tumor to be larger than the PET taken Monday April 29. It was just the magnitude of the original field of malignancy (From January 2012) that ruled out the efficacy of proton therapy. She'd have had to be on the table for two hours every day to do proton therapy and even then it would not have been better for her lungs and heart.
Ahh, I can breathe now. We have a plan to kick this monster and stabilize Lorelei for the transplant later this summer.
Lorelei is in pretty good spirits considering.
By the way, did you hear that Russell Westbrook called her last Wednesday? Seriously! On her cell phone. From his California area coded cell phone. She didn't recognize the number but answered it anyway.
Russell: "Hi Lorelei. This is Russ."
Lorelei: "Ohhhhh! Hi! …"
They talked for quite a while. He heard she'd received bad news the day before. Apparently he can relate to receiving bad news too. ...Something about a knee injury that required surgery and put him out for the playoffs. So, Lorelei and Russ talked about dealing with disappointment when life changes your plans. And about fighting. They are both fighters and are just going to have to learn to fight differently now. She shared a few funny Coach Brooks stories and Russell asked her where she'd be sitting at the game because he was planning to be there too, his first Thunder game to watch ever.
It was surreal seeing Russell in the stands wearing the giveaway T-shirt.
Lorelei still believes in her Thunder. Be sure to check out the video at http://iBelieveOKC.com.
Joyful in hope,
"Be joyful in hope, patient in affliction, faithful in prayer."
Romans 12:12 (NIV)
Posted on Thu, May 9, 2013
by Andrea Decker