Morning VP's...what a @$&%&$# week this has been. Remember that "rabid sky-diving" we did and wrote about in the early stages of our journey. Well some son of a $#%^ left the keys to that plane out and just when we sort of had our guard down, that damn insane pilot found them, and took us on another wild-ass ride that scared the absolute &^$# out of us. Do you have any idea how much we HATE that?
Michele's visit was like an IV of "Happy, Encouraging, Witty, Hyper, Determined, Scholarly, 'Really' Juice." It was sandwiched between 2 horrible clinic days and really did a lot to temper how brain-fried both Brenda and I were after those doctor visits. If we could just bottle some of this juice Michele produces, we could all retire and live happily ever after on a beautiful Tahitian island. Having dinner with Koko just helped bring back some of the sun and fun we all had on our last 2 Olivia Cruises to Barbados and Tahiti. Skyping with Karen and Michele and the Aussies just helped us sooooo very much fell closer to you all. Seeing you and being able to see your expressions is priceless. We laughed till our sides hurt. Really Karen...technology & your new MAC are fantastic...don't be afraid...walk to the light!!! Ha!
OK...OK...I'll get to what we learned yesterday from the main guy...Dr. Hong. The chemo regime is a little different than what Mary first told us. Things are CONSTANTLY changing!! It's the norm and really frustrating, but Bren and I learned a long time ago to move with things and not get too hung up when paths changed...everything always worked out and most of the time it was for the better. Instead of chemo once a week, like we thought, chemo infusion will be on the same schedule, with the same drugs, as Stage 1 only at a lower dose. So she'll have another 3 rounds of chemo. Each round is on a 21 day cycle with the first 3 days of each cycle as infusion days where she actually gets the drugs. The other 18 days the drugs just work through her system. Needless to say, it's going to be a VERY busy time going back and forth to the clinic for infusion, radiation, office visits because both Dr. Hong and Dr. Schwartz want to see her weekly. Then I'm sure there will be Nulasta shots, blood draws, educational clinics and heaven knows what also inserted in there. Pray for us a lot...PLEASE!!
We tried to pin Dr. Hong down on several issues, but he's just taking a very conservative approach when discussing outcomes and side effects with us. In retrospect, I think that's all he can do safely. He said that Brenda's tumor's presented some significant challenges and that her cancer was quite advanced when we arrived. That is why they are hitting this so hard...every one is after the CURE!! He said that...we are in the CURATIVE mode. He said that is the main mission right now and even with all the scans and knowing Brenda's case so well...he still feels that her cancer is "POTENTIALLY CURABLE." He said that he will worry about long term side effects AFTER the CURE! He said there was no other approach to take right now. He's wants to take the less invasive route to see if they can kill the cancer...especially the small lesion in her brain, and avoid having to do that cranial surgery. We totally get that part. He felt all around Brenda's neck and said that the treatments were affecting the tumors "satisfactorily." It's just one day at a time and we HAVE to be patient with that. It's a very slow process, but we're ALL working toward the CURE!!!!
We haven't gotten the chemo schedule yet but I can envision that most likely starting next week along with radiation. I'm thinking we should hear from Mary today or see that on the MD Anderson scheduler. While Brenda is feeling so well, we're going to try and get out and have some fun and eat some good meals. We're both still pretty exhausted right now so we'll be trying to recharge our batteries in preparation for the days ahead.
To all of you who are hanging in there with us on this long walk...a thousand thanks from the bottom of my heart. Words just can't describe how comforting your efforts are to us. I can't imagine having to travel this path alone. Many do unfortunately. We see them wandering around the clinic and it's so very sad. We really do feel your presence and know that we can reach out for you when we need something specific and you'll be there even though hundreds of miles in some cases might separate us. I really don't know how we could do this without you. It DOES take a village to get through this.
So I need to get off my keester and go for a walk while it's still just warm outside instead of oppressively hot and humid. Brenda is napping and thats good...she needs to build up all the strength she can muster for the days ahead. She is such a brave and determined soul and will remain, forever, my hero.
Love and blessing to you all...
Nurse Dee and our favorite Chemo-sabe