Thursday, September 27, 2012

The "Keeping You Posted" Post

I saw my new doctor today and liked him very much.  He has a very different manner than my last radiation oncologist, a bit lighter and not so serious, which I personally prefer.  Plus, he had good coffee in his office.

Although, truth be told, I wouldn't much care if the doctor had the personality of a bed post as long as he or she really, really knows their stuff, but I really don't appreciate arrogant doctors and am delighted to have an excellent, positive energetic doctor who has nary a trace of that "I'm a brain surgeon" swagger.

Anyway, he took lots of time with us in an office rather than an exam room (another touch I appreciate) to explain our options.  He showed us the 3D image of the tumor and where exactly it is sitting.  It is deep inside the brain and as so is inoperable.  So it basically boiled down to two choices:  zap it now or watch and see what it does.  Everyone is so miffed by that last disappearing tumor back in March that there is almost a "let's wait and see" feel.  However, it is growing so quickly (actually already 1.3 cm by his measurements in 3D, not just across one plain that showed the 7mm) that he suggested we get it before it gets any bigger.  This has grown in under three months, since my last brain MRI in June showed no trace of it.  My last doctor would not treat over a centimeter, but this doctor is willing to.

The concern with treating a larger tumor, I learned today, is that while they can be very precise with the intense radiation dose and where it goes, there is a halo of much less intense radiation that will circle the tumor, often leading over time to brain tissue necrosis in the area.  The bigger the original tumor, the greater the halo and the more damage done to the brain.  They are finding, as people with brain mets are living longer and longer, that this incidence is much higher than they had originally thought.  But I still prefer to have more years with my kids than perfectly preserved brain tissue.  They'll still love me if I'm a dummy.  (At least they'd better!)

Today right after our get acquainted appointment, the office staff made my mask (you remember, the one that bolts you to the table and makes an excellent Halloween souvenir at the end) and something new to me...a bite plate that screws my jaw down with my mask so I can't move even the teeniest fraction of a millimeter.  Warning:  if you are claustrophobic or have a serious gag reflex, don't get cancer in your brain!  I was fighting my own mild gag reflex all day.  Breath through the nose, breath through the nose, don't let your tongue touch the intruder in your mouth. etc., etc.

So, net net, I am all set for a single mega dose of radiation on Tuesday.  No decadron (yippee, yahoo!), a thirty minute procedure, and then we wait months to see what it does.  My doctor believes I have a 80-90% chance of a complete response.  I am praying for better odds than that, but I'll take what I can get.

There you have it, up to the minute.  It's in God's hands now...always has been.

Wednesday, September 26, 2012

Here We Go Again

Results from yesterday's brain MRI were not what I had hoped they would be...but they were not as bad as they could have been either.

I have a new tumor on my brain measuring 7mm.   It is located on the margin of the left lateral ventricular and appears to be a regrowth of one of the original lesions.

No, this is not good news.  And, no, I am not totally surprised, as I knew, statistically, that this was eventually a virtual certainty, and that I have been very fortunate to go a year with no regrowth.  Nonetheless, I was becoming pretty convinced by clear scan after clear scan that I was going to be Don Alvaro's miracle, a dream I am not planning on giving up no matter what the medical evidence says.

And it could have been much worse.  If I had a lesion measuring more than a centimeter, or if I had more than six lesions, according to my previous radiation oncologist I would not be treatable, so I am actually counting my blessings that this is at least something we can attack.

I am seeing a new doctor tomorrow, a brain-specific radiation oncologist, and we will decide what to do about this pesky growth. I have no idea what is coming down the road for me in terms of treatment.  Could be gamma knife radiation, could be chemo, could be craniotomy, I really have no idea.  I pray that whatever it is will not be too awful and that I don't lose any more cognitive function, since I have far less to spare in that area than I used to!

Is it impossibly vain to add that I hope I can keep at least most of the bush residing on my head that I have so labored to grow in desert conditions?  Gray and frizzy as it is, it is mine and I am fairly inclined to keep it.

So, I will keep you posted (Get it?  Posted?  Ha ha!) after I see my new doc tomorrow.

Keep praying and know that, truly, though I am acutely sad for my family to have to experience more of this, I am at peace and always, always trust that God unfailingly gives us what we need.

(Whether we want it or not!)

Monday, September 24, 2012

So Much for All That Extra Time

Didn't I say that having help with the house would give me more time to blog?  Hmmm...  It's not really worked out like that so far.

I am so happy to have help with the never-ending laundry and ceaseless feeding of the kids that I have been busier than ever!  I have been helping the kids with their homework every night, quizzing them on vocab and for tests and, for the first time in years, really understanding what they are doing in school and sports.  I actually took Natalie to the library and have been reading to her.  I can't remember the last time I did that with one of my kids (for awhile now, I have been having the older kids read to the younger ones, truly a shame in retrospect).

I am getting ready to paint the little girls' room and have been busy attacking piles of accumulated junk around the house.  I have updated girl scout vests, spent time playing the Dora matching game, Scrabble, Club Penguin and Racko to my kids' delight.  I have taken them to the scooter store, out for ice cream and shopping when they need something specific.  I have read the books my older kids are reading so I can discuss with them and help them as needed with related assignments.  For someone who has spent much of the last year asleep and every waking moment fulfilling the basic needs of the family rather than enjoying the family, I feel as if I have a new lease on life.  There is so much to do, especially with the kids, who I almost missed grow up in my stupor.

I would be a fool if I weren't taking advantage of this extra time to sleep as needed, but I'm no fool!  I am not the same physically since my brain radiation and get terribly fatigued each afternoon.  Being able to give into that and nap, knowing that the house, dinner and the kids are being cared for is such a blessing in this regard.  When I wake up I am ready for the evening shift, altogether more cheerful than I was when I was trying to "do it all" and failing miserably.  I am most definitely counting my blessings and thank God for the resources he has provided us to be able to get me the help I need.

I have a brain scan tomorrow--nothing suspicious, just my regular three month check for malicious activity.  I am praying harder than ever that it is clear, because I am most definitely not done with my work--the only work that truly matters in the end.

Monday, September 03, 2012

Always a Student

I have learned several things this month that I thought I would share with you.  In no particular order...

First, I learned that there is such a thing as "right" and "left" socks.  Imagine my surprise when Joey, who has always been particular about his socks (I remember hours of preschool torture when his sock seam wasn't lined up properly), rejected his folded and paired socks because I put two right and two left socks together.  Seriously?!

My first reaction was, "You're kidding, right?"  Socks don't have rights and lefts, they are simply socks!  Plus, it is hard enough to keep socks for 9 people straight without adding THAT particular complication!  He looked at me like I was the dumbest person on earth (he is fourteen, you know) and set me straight immediately with an exaggerated show of pointing out the microscopic R and L printed on the toe.  I hung my head in horror when I realized that not only had I given in to buying this ridiculously overpriced brand of sock because my budding football star's feet were uncomfortable in "regular" socks, but that I had created a right and left nightmare for myself in the process.  What a dummy I am.

The second thing I learned is that school assignments are no longer turned in on actual paper.  Joey's first real high school assignment is due tomorrow, and I only just learned that it has to be submitted online through a plagiarizing-detecting website.  What?!  Back in the olden days when I was in high school, I didn't even type papers.  There was no internet to cheat off of.  There was certainly no way to check that it wasn't someone else's work.  I have now been educated that there is a whole new world of cheating now, thanks to the world wide web, and these are the lengths to which we must go to keep our kids honest.  Who'da thunk it?

The last and likely most important thing I learned this month is that I need help.  Real, extended help.  You have no idea how difficult it is for me to admit this, especially since I feel I am getting stronger every month.  Nonetheless, my amazing and ever supportive family, extended family, and friends, who have gone to great lengths to help me every day with all sorts of things ranging from rides to meal prep to laundry and endless childcare, have at last convinced me that my situation is unsustainable.  Even with my army of helpers, I fall further and further behind in my household chores and in caring for my family.  As I am finally realizing that it is statistically (not divinely) unlikely that I will ever be much stronger than I am now, I have accepted his reluctantly.

So, beginning Wednesday, I will have that help.  Through a wonderful and trusted reference, I will have someone here with me Monday through Thursday in the afternoons, when I am most tired, to help me with laundry, cooking, grocery shopping and child deliveries as needed.  This will take some burden off of those who help me so much (and aren't getting any younger, as one of my parents put it) and it will allow me to spend more time with my kids, which is what I really want to do.  I can help them with their homework, hopefully be more cheerful instead of snappy and tired, and be generally less stressed and upset about all the things I can't do.  I can say yes when my kids ask me to play board games with them or read to them because I won't be falling asleep on my feet at 7pm.  And guess what?!  I should have more energy to blog.  Let's hope!