Monday, September 23, 2013

Still Here and This Week's Travel Plans: CTCA Here We Come

Just so ya know, I am still alive. I seem to avoid the computer a lot lately, for some reason. Perhaps because it is a reminder of how little I seem to be capable of doing proficiently anymore. My hands shake now, worse than ever, which makes typing somewhat frustrating for me. I've always had shaky hands (as my students know - they were happy to come to my defense and inform the uninformed when questioned, "that's just the way Mrs. Brigman's the way God made her"). Wellll, this shaking is more than the way God made me. And it comes and goes. I'm like a 90 year old woman, in more ways than one. But I will attempt this quick blog post, which will involve lots of backspacing and editing, I am sure.

Not a lot has changed since last blog post, including our unfinished bathroom. Yes, we have plumbing and flushing toilets, so a now untiled concrete floor, missing tile around vanity, and missing trim...we can live with. Of course, something not mentioned in the last blog post was the fact that our hot water heater decided to die within a couple of days of getting our plumbing repaired.  Luckily our sons caught the flood in the garage before it got out of hand and prevented a much bigger mess. 

Wish I were as easy to repair as our plumbing! I have not had the bottoming out episode of the last round following chemo. I believe the steroid I am on is helping, plus Dr. Beck has backed me off of Afinitor - every other day now. That, I believe, is the hardest drug I may be on. If I am going to throw up, it's usually not long after taking Afinitor. I am still taking Xeloda, 3 tablets, twice a day, 2 weeks on, 1 week off, plus my every 3 week infusion of Carboplatin. I begin my week break from Xeloda tomorrow, so yay.

I don't know for sure which drug to blame, or if it's still the effects of the whole brain radiation, but my fatigue is chronic and non-stop. Each week when I go for lab work and check up they ask my pain level (always 0) and my fatigue level (usually 8 on a 1-10 scale). Yuck. I make it from sofa to chair to bed to chair to sofa. Not a lot of vertical, on my feet time in my life anymore, which is so not like me. Thankfully, we have had some amazing weather lately, so I have been spending a crazy amount of time sitting outside. It's so much more pleasant than my dirty house.

Biggest news for the week though: We leave for Cancer Treatment Centers of America on Thursday. I had hoped to go to the center in Tulsa, which would be maybe a 2 hour drive from here. However, they do not take my insurance (BCBS). Oddly, their center near Chicago DOES take this insurance. Not only that, but they arranged and are paying for our travel and hotel...up to 6 days. Seriously!? I asked how they could afford to do this and was told they have a foundation - anonymous contributors, employee contributors, and others. Very nice. So how could we not go? 

I normally love flying, but am not looking forward to this time. They have arranged a wheelchair, so I will get to experience a different type of air travel. Ugh. Independent me is not looking forward to this.

Anyway, please remember us in your prayers. I don't know what to expect at CTCA, and am hoping for some new info, especially in relation to my side effects, longevity, and any holistic treatment that might help.

I will try and do a better job of posting to this blog. I just need to learn how to shorten these things. I'll be the first to admit that I can be too long winded. Typical teacher.

And a big PS: Thank you to the many, many cards, notes, meals, groceries, and kindnesses that have shown up in my mailbox and doorstep in the past few weeks. I continue to be flabbergasted and thanking God for so many kind friends and students. This is a crazy time in my life, one I hoped to NEVER experience (and hope none of you ever do), but I have felt so blessed during it all, thanks to your support and kindness. You have no idea. Much love to you all. Patti