Wednesday, November 14, 2007
Everything looked exactly the same today as it did in September, which is a good thing. My neuro test was great, too. Apple, Fox, and Popcorn were the three words to remember, and I even had to correct the nurse practitioner, who was drawing a numeral six on my hand while my eyes were closed, but she was accidentally drawing it backwards.
And there was good news on top of good news -- I had lost four pounds, too.
Unless I develop any weird symptoms I won't have another scan for eight more weeks. I'm a third of the way toward going treatment-free, if things continue to go well.
Much thanks again for all the many prayers that made this possible and bearable!
Tuesday, November 13, 2007
- how to spell pneumonoultramicroscopicsilicovolcanoconiosis
- how to use that word in a sentence for the "please write a sentence here" section of my patient neuro test form
- mental rehearsal of upcoming Messiah arias
- decide: what joke should I share in the chemo infusion room (the one that always comes to mind is: Q. "What is an insomniac dyslexic agnostic?" A. "Someone who stays up all night wondering if there is a Dog.")
- mental review of karate Pinions # 1, 2, and 3; defense maneuvers # 2, 3, 5, 6, 7, and 18; and kempos A, B, C, D, and E.
- brainstorm ideas for my "can't buy it" Christmas present for my husband (our annual tradition)
- brainstorm ideas for celebration activity if we get good news
- create mental picture of healthy glial cells holding up a sign during the MRI that says, "Really, guys -- it's all clear here!!!"
- construct mental list of words that seem to contradict their own meaning (like "phonetic", "abbreviated", and "monosyllabic")
- try to remember the list of the 2-letter words that are legal in Scrabble
- debate practice -- which was named "orange" first: the color, or the fruit? (pick one and defend)
- sing the alphabet backwards (my son and I like to do this for grins)
- decide: which of the dozen books I have in embryo form will actually become a manuscript
- ponder: why do bats have nipples under their armpits?
- happy picture slideshow: my son's grin with his two front teeth missing, my daughter in her new saddle shoes (like the ones I used to love wearing as a kid) and my husband's happy face when he comes home after driving around in Mustang Krista and says, "I love my car!!"
...and, of course--try to count all the prayers that will carry me through this process.
Monday, November 12, 2007
(Speaking of miracles, my dad's surgery went very well, and we are once again grateful for all that works together for our good.)
On Saturday we went to Six Flags for my husband's annual company picnic. I looked wistfully at the rollercoasters that are now off-limits to me, and then I shook it off, realizing that a few minutes of screaming fun on the Titan or Mr. Freeze would hardly be worth risking a brain hemhorrage. (Life lesson: live in the moment, but don't let momentary thrills rob long-term goals.)
I also remembered that the Six Flags picnic in November 2005 was the day before I had my first known seizure. We don't know how long I had glioblastoma before becoming symptomatic, but we know I have been living with it for at least two years. "Living" being the key word.
The nurse called with my lab results on Friday. "You can eat raw fruits and veggies and run down the street with scissors" was the message. It's her funny way of letting me know that my white blood cells and platelets are still at good levels, and I'm tolerating my chemotherapy. (Hopefully any tumor cells are not so lucky.)
There were other reassuring signs of life this weekend. I got an email the from a friend, congratulating me for appearing in this fall's issue of BYU's alumni magazine. This weekend I also learned how to spell "pneumonoultramicroscopicsilicovolcanoconiosis" (a kind of "black lung" disease, relating to the inhalation of fine silica dust found in volcanoes; and more importantly, it's the longest known word to appear in an English language dictionary and something my 26-year-old brother can spell easily). I noticed and corrected my own spelling of the word "isthmus" in my Ode to Thy Roid. (Blog reader neuro test: did you catch it when it was misspelled i-t-h-s-m-u-s?) My son and I reviewed the material from last week's karate lesson, and I remembered all that we learned about Pinion #3, the new form we need to master for blue belt level.
But I still had to search for my shoes as we were leaving for church yesterday. I remain the walking miracle with a question mark on my head. (Figuratively speaking, but also literally, as the surgical scar on my scalp is question mark-shaped.)We'll soon have a better idea of how things are going. This Wednesday is picture day -- the first MRI after going on maintenance treatment, so I feel like I have one training wheel off. It's a nervous time, for sure. If things don't go well, this will be our third holiday season with "special perspective." But if this week's outcome is good, it may be my last scan until January, and I can look forward to finishing out 2007 with happier things on my mind.
Monday, November 05, 2007
In preparation for the festivities I also wrote an "Ode to Thy Roid", which I bounced off my mom (my unofficial editor) and she insisted that it belonged on my blog. It reads best if you use your best Shakespearian English accent:
Thy roid --
That bow-tie shaped gland of thine --
The larger gland of the endocrine;
Is annoyed, thy roid –
Makes you hoarse when you whine.
It must go –
Should not loiter
And turn into a goiter.
(Or worse.) Take it out, for it’s ill –
It’s replaced with a pill.
It’s a pain in the neck,
But oh, what the heck –
With the slash of a knife, thy roid--
Thy bow-tied foe—
Must now go.
We weep not for thy roid,
With its lobes and its isthmus
And its cancerous growth –
Be it gone!
Thy roid – below thy pharynx,
And surrounding thy larynx --
We bid a hasty farewell to thy roid,
Who in its treachery
Has now become void!
(Ah, well, at least it's better than: "Glioblastoma, pack up and go home-a, before I go into a coma...")