Unfortunately, the medication is not causing these things. Rather, it is the 15 or so roughly centimeter-sized metastatic tumors that were uncovered in my brain today. Yikes.
After a brief freak out, I sensibly made use of my anti-anxiety medication. Turns out that stuff really works for major anxiety (it was actually prescribed to me for chemo-related nausea and that is what I nearly always take it for, so I was delighted at its effect on my very raw nerves). 30 minutes later I had regained control of myself and was ready to speak with my doctor to figure out what this all means for me.
There is no doubt this is a very unfortunate and major setback for me. Nonetheless, the cancer is completely controlled in my liver and bones right now, and this is a very good thing. Because of this, they can focus on treating the brain aggressively right now without worrying about more than maintenance for the rest of my body because nothing there is on fire. Thank goodness.
So, the treatment plan? First of all, I need lots and lots of prayers. Please kick them up, especially through the intercession of Bishop Don Alvaro if you are Catholic (or even if you aren't but are so inclined). I do believe he obtained for me my first amazing healing of the liver which remains clean even now, so I'm sure he can do a heck of a job with the brain! Prayers are what give me peace and the strength to face this with all I've got, so I thank you for them, in whatever form you care to pray them, from the bottom of my heart. I am specifically asking for COMPLETE HEALING. Oh, and prayers for my family would be appreciated as well please, as this is very difficult for them.
I am officially off the TDM1 trial now, but so love that drug that did so well for me for so long. It did its job beautifully but never had a chance in the brain because of its molecular weight. So, we are switching to a new chemo tomorrow. This one is called Tykerb, is for Her2+ cancers, and does cross the blood brain barrier. Those suckers aren't going to know what hit them in a few days. This chemo is in pill form and does not require a port infusion. I am guaranteed to have tummy troubles with this one, but we'll take it one day at a time with that. I will also have Herceptin infused every three weeks to maintain the disease outside of the brain. That one is no big deal. Very similar to the drug I have been on all this time, just a little milder.
In an amazing, and I mean truly amazing, flurry of activity I began the radiation portion of the show today. Same day as diagnosis, can you believe it? It often takes weeks to get started but my wonderful oncologist made a phone call and pled my case with the rad onc and he saw me within 20 minutes and I was actually receiving treatment a few hours later. I did not know it was possible for radiation oncology to move that fast and am so grateful that I was already able to attack this rather than wait seemingly incessantly for treatment to begin.
I will be having 20 treatments of Whole Brain Radiation (WBR). Every business day for 4 weeks. I will have these in Mission Hills so at least I don't have to go all the way into UCLA. I cannot drive for now, so I will need lots of help from lots of people, most of whom don't even know yet that they will be called on. Sorry! But if I've learned anything from all of this, it is that I need help. Humbling, to be sure.
WBR is an intensely fatiguing experience I am told, and this will last for several months after treatment. I have been advised by my doctor to accept all the help I can with the children during this time, as I will have no desire to remove myself from the couch. Hmmm...we'll see how that works out, but a nice thought! I may have some short term cognitive processing problems, so please bear with me if I can't remember what I was talking about or have a hard time finding a word. I am likely to continue to be off balance for awhile as well. But all this should get better over time.
I will be losing my hair in about a week. It may grow back and it may not. The plan is to cut it super short this week so I have less gobbing off. Maybe I'll look like Halle Berry. Or maybe I won't.
I am now on a fairly powerful steroid called Decadron to control the swelling in my brain. This should significantly reduce my numbness and headaches in a few days. That's the good news. The bad news is that I am virtually guaranteed to become an emotional wreck overnight. You may want to avoid me for the next few months. (Unless you want to see what I look like bald, of course!)
I am truly sorry to report such dreary news and pray that all of you who read this will adopt the cheerful and positive attitude that I must maintain to see this through. Lurking under this sunny outlook, however, is enough fire in my belly to attack this, so don't worry that I am going to turn into a passive little flower. I am mad at this sneaky, rotten disease, and I want it out of my body. Now. All of it. ESPECIALLY out of my brain, for goodness sake.
Thank you for your prayers, your kind thoughts, your patience with me and the help that always comes when I need it. I am blessed in family and community and wouldn't trade that for anything.