Monday, December 12, 2016

Count Your Blessings!

Good morning, and hope y'all have been happy and busy gearing up for Christmas.  I, for one, have been busying myself with shopping, because (A) I love Christmas shopping.  It's something I feel I'm good at -- listening for clues or oftentimes lately just flat out asking the kids and other family members what they want or need -- and then choosing that perfect gift.  Sure, I've had some fails, but it's not for lack of trying!  I put so much thought, effort, and time into Christmas gift-giving, I think it borders on crazy overboard.  But that's just who I am!  A little psycho, perhaps.  And hey, any Christmas could be my last.  Or your last!  Seriously I use Christmastime as an opportunity to splurge a little on special people, at least to the extent we can afford.  I lean more toward the "Opening more gifts is more fun" rather than "I'm just going to give them one big gift or a sum of cash."  So there you have it, my Christmas gift-giving philosophy in a nutshell.

Alrighty then, where was I?  Oh yea ... and (B) I'm probably giving my all to Christmas, maybe even more so than usual, to distract myself from the dismal realities of my health situation.  I had a repeat MRI of the brain on the day before Thanksgiving, then had to wait 9 (excruciating) days for the results, because my neurosurgeon was stuck in Canada for a few days more than he had planned.  The results were great!  No new brain lesions, small ones had disappeared, and the large one was significantly smaller than before.  He believes this is just a "snapshot in time" of the improvement that he expects to continue.  This was wonderful news, but being the realist that I am, I was surprised.  And also skeptical and concerned.  Because during the course of those 9 days, I developed a new symptom.  I have double vision in my left eye when I look way to the left.  At first, it seemed to come and go and I wondered if it was even a thing.  But then it kept happening, and I was like, yes, this is real.  So I expected something to be found that would explain this, but there was nothing.  The neurosurgeon did a quickie quick and limited neuro exam and determined that I had a very mild 6th cranial nerve palsy.  This nerve travels a fairly long distance in the brain, but is nowhere near the tumors I had or the Gamma Knife radiosurgery I underwent, he explained.  He said it's possible that the nerve could just be more sensitive and perhaps this is just a temporary sequelae of the Gamma Knife procedure.  It was a brief conversation and he talks fast, and that's what I understood from him.  He proceeded to call my oncologist to tell her of my "subjective" complaint of left lateral diplopia.  I was told to notify him if it got any worse or if i developed any new neurological symptoms.  I felt somewhat slighted, dismissed, but I have to keep in mind that I am very sensitive to changes in my body, and I usually can tell something is happening very early on, sometimes before scans and exams even show anything.  And so, I successfully robbed myself of happiness that I should have felt after receiving good news from my latest MRI.  Of course we did celebrate on the way home by going out to lunch (which I actually deserve after EVERY cancer appointment,) but it was marred by my own worry and doubt. Mmmmmaybe I'm just going crazy!

Later that same day, a Friday, I received a call from Dr. C (onc) to say that she had viewed my bone scan and CT scan of the chest, abdomen and pelvis that had been done the previous day.  The scans had not yet been officially read by a radiologist, but she wanted to call with at least some preliminary results.  This is so nice, and refreshing, and considerate!  Every cancer patient knows what that wait is like-- the wait between having the scans and getting the results.  I am so blessed with a kind, compassionate and competent oncologist!  She said that the lung and bone metastases looked stable, but the liver looked worse.  I was already scheduled to see her on the following Tuesday, so we kept that as planned and she said she would definitely have the radiologist's reports by then. It wasn't great news, clearly.  I had to put it out of my mind until Tuesday.

Even though she had prepared me, or tried to prepare me for the potentially bad scan reports, for some reason, I was shocked when she explained that I was to immediately stop Ibrance and Faslodex, and I would be moving on to a different chemotherapy.  She told us of the two chemo options left (yes, just 2) and said that she would look into what, if any, clinical trials were going on now that I might be qualified for.  In the past, when I've had what they call "mixed results" (stability or improvement in some areas, but progression in other areas,) I've had the option to stay on the current treatment and take a "wait and see" approach OR move onto something else.  I brought this up and she was pretty firm on the fact that it was time to move on.  The metastases in the liver were significant enough to warrant a treatment change.  She showed us the "pictures" from the CT, and yes, it was pretty ugly in the liver.  Evidently you don't mess around with enlarging liver mets.

I am scheduled to start on Doxil, a form of Adriamycin, on Friday, 12/16, unless something works out with a clinical trial before then.  Among other side effects such as nausea & vomiting, fatigue, and cytopenias, I'll lose my hair again.  This is low priority, but darnit, I just bought a bottle of shampoo!

VERY upsetting news, all of this!  You just don't know what this takes out of me, my marriage, my family ... how many times can my death be held over us like a black cloud threatening to rain on our picnic at any moment?!  Since learning of the latest results, we threw together a family vacation to one of my favorite places, the Smokies.  It could be our last!  Looking forward to it so much, and I'm so glad that the 3 kids can all be there.  Also, we are paring down Christmas to just us and the kids and Shea (my oldest daughter) and her family.  Trying to make the best out of our situation.  Again.

To think that at one time, many years ago, I thought having cancer that had spread to the lymph nodes was a death sentence.  Oh, how my attitude has changed!  Then it was stage IV and I thought, you're a goner.  Then for a long time, years even, I was happy that well at least it wasn't in my brain.  And now I'm there, and I'm still here.  A fellow breast cancer survivor struck up a conversation with me in a store checkout line.  She wanted to know all about me and my cancer status, which I never mind sharing.  To be honest, she asked more than some "friends" do!  But I digress.  Anyway, she asked if I had a lot of pain.  And I said "Some, but not a lot, considering."  I do have times with significant pain, though, but it made me think.  I DO have that to be thankful for-- that despite my stage IV-to-the-max diagnosis, at least I'm not in constant severe pain.  And I'm STILL able to get up and go to kids' activities and family get-togethers.

If you're reading this, please say a prayer for me and my family. Thanks.

1 comment:

  1. I am ordering a survivor ribbon charm from your store. Prayers going out to you and your family. Never give up hope! I am a stage 4 anal cancer survivor and stage 2 breast cancer survivor. God will take care of you! Bonnie