Here Comes the Sun

I actually had a great appointment with Dr. Sun today.  

Dana was able to come and help fill in some holes about my healing process from the times that I was so fatigued and weak and could fall asleep mid-sentence, for which I was truly grateful!

It was time to get real with this young doctor, especially now that I am so much closer to being my normal self than when we last met for a follow-up.  

I asked why it took so long for us to get started on treatment.  That concerned me and actually upset me, as I know my past with cancer and how aggressive it has always been.  My catch phrase for it has been, "It   grows like a weed, but dies like a weed."  When we find the right treatment, or weed killer, it dies off,  sometimes miraculously.  

I was shocked by his response:

"To be honest, I didn't know if I wanted to treat you."  

He further explained, not that I wanted to do nothing, but I wanted to make sure this was the plan that I wanted to take for where you are in your journey.  His honesty was incredible.  He explained how he and Dr. Scranton were hoping that gamma knife radiation would be an option.  He spent quite a bit of time researching and consulting with colleagues and peers for second and tenth opinions.  "Most everyone said to go ahead and treat you."  He still was researching dosing amounts, meds to add or not add, and pretty much everything he could before he made his own decision, also inspired by my desire to proceed.  He knew he needed to do something, but he just wanted to do his due diligence on all he could find before committing to this second whole brain radiation, which doesn't have a high success rate and is not a guarantee.  "There's no magical technologies out there, and I have not had previous experience with a patient like you.  I always reach out to my peers and medical experts in radiation oncology.  There is only so much that can be gained from published papers."

I then ran him through all the side effects after brain radiation (and choosing to have chemo on the same day as the last day.). He asked questions.  Between my memories and Dana's we were able to explain the quick decline for the weeks after the original treatment: super-fatigue, extreme weakness, not able to walk unassisted, collapsing to the floor and needing help to get back to a couch to standing position, night hot sweats and cold sweats, incontinence, needing more steroids, mouth sores, quick weight loss (from 172 to 157) in a matter of a few weeks, dry mouth, not able to complete some sentences without falling asleep mid-conversation, not accurately texting or having ability to use my phone, and a few others.  

Once I got adjusted steroid dosage and other drugs worked out, and was able to keep my body fed and set alarms to keep on a good schedule, all that started to turn around, as the old Sun doc could see today.  

I was grateful for his honesty in discussing this with me.  I explained that if there is a treatment, I want to pursue it.  This is part of my goal in this journey--to help other patients not have to endure the years of metastatic disease that I have and help put information out there, possibly to benefit my own treatments in the future, but for sure for the benefit of others.  I think he responded well to that.  

I even think the Sun is FINALLY starting to truly understand my determination, strength, positivity, and humor in this journey.  I actually made him laugh today.  It might have been more of a quick chuckle than an actual guffaw, but we are getting somewhere.  I told him that he's lucky that I was born a genius and still had most of my memories intact.  

I also told Dr. Sun about my GOAT oncologist.  He looked her up and is planning on getting in touch with her, which is so comforting.  

It was another good day.  

Sunny is making my follow-up brain MRI, which will be in Lubbock, and he will schedule it for a day when he can meet with me that day to review results.  As I come off of steroids, he told me to call if I get super cranky, fatigued, or have frequent headaches or other negative side effects.  

How great it is to finally feel on the same page with this young and somewhat timid and quiet doctor of mine.  Communication is key!

After that, Dana and I went to lunch and I'm home to rest and write.  

Baby steps are becoming Toddler steps now.  I'm on an upward trend and still expecting miracles!