Tuesday, August 26, 2014

The Latest from the Cancer Front

My long-awaited appointment with Dr. M to discuss getting on a clinical trial finally happened a couple of weeks ago!  After a VERY long wait to see the doctor, what she presented was not what we expected.  She said that currently there were no clinical trials available for me.  :(

However, she did offer me a couple of options.  The first option is another shot at hormone therapy -- a combination of three drugs.  (1) Aromasin - I've taken it in the past and it didn't work.
(2) Afinitor - I have not taken this before.  It's supposed to work in concert with Aromasin, somehow addressing cancer's resistance to hormone therapy.
(3) Zolodex - I took it for 4 years in conjunction with other hormone therapies.  It's a monthly injection that works to shut down the ovaries' estrogen production.  The thought is that even though I've not menstruated in several years (as a result of various breast cancer treatments,) my body may, in fact, actually be producing estrogen.  If that is the case, then my cancer is having lots to "feed" on, hence its recent significant growth.

The second option is a chemo drug called Doxil.   This is a potent chemotherapy drug closely related to Adriamycin which I received 14 years ago as part of my initial breast cancer treatment.  Doxil is supposedly less cardiotoxic than Adriamycin, although the literature is very scary regarding its potential cardiac effects!  It also has many other nasty side effects ... soooo, I decided to try the hormone therapy route again (as explained above.)

I was able to start Zolodex and Aromasin right away, but  it took over two weeks to get my insurance to approve Afinitor, the most important part of the drug trio!  So frustrating!  I am finally taking all 3.  Yay!

In the interim, I was stressing out because for over 6 weeks, I was on NO cancer treatment.  This was a result of my week-long vacation, having to stop previous chemo because of severe neuropathy, and multiple brief waits for doctor appointments that just added up.

Additionally, for a few weeks I was running a low-grade fever of mostly 99's, 100's and the occasional 101.  Often I would feel a little chilly, and that's when I would check my temperature and discover the fever.  I had a nagging dry cough that was getting worse.  I'm pretty sure the coughing was just as aggravating to my family as it was to me!  I reported this to Dr. P and she ordered a chest x-ray and prescribed Cipro.  She said that I may need to consider thoracentesis if the coughing didn't improve.  I am not too keen on this!!  It's an invasive procedure that involves placing a needle or tube into the pleural space of the lung and removing fluid.  Yuck, yuckity, yuck yuck.  And, what I've learned from my reading is that the drainage ALWAYS needs to be repeated in the cases of pleural effusion caused by malignancy.  I don't want to start that!

The chest x-ray showed a large pleural effusion, which we already knew was there.  BUT, the radiologist reported that an underlying infection could not be ruled out.  A few days into the 7 days of Cipro, my fever shot up to the 102's and stayed there for a whole weekend.  The coughing was so severe that I was actually considering having the effusion drained.

And then, the fever subsided!  I guess the Cipro did its job and handled whatever infection I had.  Dr. Kim thinks she had pneumonia!  Since then, the coughing also has almost completely subsided.  Go me!

I was beginning to feel pretty good, better than I had in a while.  My foot is healing, although still a little sore when putting weight on it.  The coughing, as I said, is much improved.  My hair is growing back, which has perked my psyche up a bit.   Unfortunately I recently began having severe indigestion which has decreased my appetite and prevented me from eating much.  Guzzling the Mylanta, because I have a lot of gurgling in the throat/upper chest area.  I've lost some weight, but not really in a good way.  I'm beginning to look like an emaciated cancer patient!  Also having periodic diarrhea, which can't be good.  I'm a mess!  At my nurse's recommendation, I spoke with a nutritionist who recommended small, frequent meals/snacks, and possibly adding a supplement such as Boost.  I tried to increase my intake after that conversation, and I think it was starting to go well.

But then, about a week after starting Afinitor, I developed a mouth sore.  Most of you know how painful that can be.  For me, they usually just have to run their course before dissipating.  But this time, the "course" seems never ending, and right now I am up to 6!  Tongue, lip, under the tongue, both cheeks, and throat!  Now I really really can't eat.   I am rinsing with what the doctor recommended, but nothing seems to help.  Well, actually, chocolate snowballs feel really good and don't burn at all!   Chocolate malt from Sonic, not as good.  But woman can't live on chocolate snowballs alone.  It's getting to be a problem.

Wait ... didn't I just say that I was feeling better than I had in a while?  In some ways that is true, and for that I am very thankful.  I still have numbness in my hands and feet, but what has improved is the weakness and balance issues in my legs.  I no longer require pushing the shopping cart to feel steady on my feet.  I can walk from the car to the store without feeling like I'm simply not going to make it.  I can go up steps and get into/out of cars without assistance.  I was in a bad, bad place with severe neuropathy symptoms!  If those areas have improved, I am hopeful that I will improve in other areas as well, such as being able to type, open things, and clip my own nails!

Sunday at church, parts of the sermon really spoke to me.  It was on contentment.  I know I have contentment issues.  In Philippians 4, Paul speaks of being content regardless of your circumstances.  Even though my circumstances seem rather grim at times, I still have a lot to be thankful for, so I must dwell on that!

Wednesday, August 6, 2014

My "imperfect," but memorable, vacation

Vacation is over, and my long awaited appointment with Dr. M regarding clinical trials was last week.  So lots of news to report!

Danny & I had a nice time on our vacation DESPITE our circumstances.  It helps to have a sense of humor!  But sometimes it's difficult to find humor in a situation until after it's past.  If you recall from my last post, we booked a little cabin in the woods of the Hill Country while the kids were at camp all week.  We prefer a vacation rental that's secluded, as opposed to one that's in a row of cabins or grouped closely with others such as part of a resort or campground-- especially when it's just the two of us and not the whole family.  I, being the executive planner of all family vacations and getaways, take pride in selecting just the right rental.  Good location, yet secluded.  Clean, but a little rustic is acceptable.  Equipped.  Must have a kitchen that allows us to do some cooking. An outdoor grill is nice, too!  Although we love to eat out, it's just not financially feasible to eat out for every meal, such as what you pretty much have to do when you stay in a hotel.  Over the years, we have stayed in a lot of rentals, so perhaps we are cabin snobs.  But I like to think that we are experienced renters and have a good idea of which amenities are more or less standard.  All of that said, I tend to be my own worst critic of the rentals I exhaustively research before reserving.

Upon entering the road/driveway of the cabin, we were excited as usual.  We were off the beaten path in small-town Texas.  As the cabin came into view, the first thing I noticed was a small, about 2-feet-tall concrete gargoyle "welcoming" us from the garden.  Sorry if you're a fan of gargoyles, but I am not!  They make me say "Ewww!"  We press on.  The cabin is quite cute and very secluded.  Great!  We see the hot tub, Adirondack chairs with table & patio umbrella, and toward the property's cleared perimeter, two chaise lounges.  Wait!  What's that beyond the lounge chairs??  OMG it's a GIANT gargoyle!  No lie.  Standing "guard" behind the chaises is a four-foot concrete gargoyle -- facing the chairs!  I was so creeped out!  Needless to say, we never sat in the chaise lounges, the entire 4-night stay.  Who could relax with that monster watching from behind??

However, the cabin's interior is very nice.  Adorable, in fact.  Perfectly-sized for two.  There are some thoughtful little touches, as well, such as homemade cookies & granola, milk & OJ in the fridge, coffee & accoutrements, dvd's, beach towels for hot tubbing, and spa robes to name a few.  I'm thinking "Aww, maybe this place is really not that bad after all."
We later discovered that the kitchen, although cute, had no stove!  For cooking, it had only a microwave and portable electric burner.  :(   There goes any thought of cooking any meals.  Thankfully neither of us can eat as much as we used to, so we got by just fine on sandwiches & snacks and the occasional eat out.
But this cabin wasn't done with us yet!  There was a hornet nest on the cabin's corner near the porch/door which was also near the Adirondack chairs -- mean & vicious hornets that attacked us whenever we tried to enter or exit.  Danny found some spray inside and sprayed them daily, because every day there were always more!  Consequently we had to buy more hornet spray to keep up with their daily fortifications of the nest.
And the kicker:  we were awakened nightly by the sound of a mouse/rat inside the wall of the bedroom closet!  The interior walls appeared well-sealed, so we didn't think there was a possibility of the critter visiting us in bed, but he sure was trying to chew or claw his way out!  In between the chewing/clawing sounds we could hear his squeakity-squeaks.  Eww!  Fortunately for our sleep needs, we only heard him when the air conditioner wasn't running, which in the Texas summer heat wasn't really that often.
Danny found a mousetrap in the water heater closet (in the bedroom,) so between that and the hornet spray it was evident that the cabin owner was aware of the issues.  We placed a piece of cheese in the trap and it was gone the next morning, trap unsprung, there being no trace of the critter that ate the cheese.
Our plans for this vacation were to relax and enjoy our time together.  We also planned on some driving tours, site-seeing, and perhaps some historic site or museum visits.  We knew that in my current state of weakness we wouldn't be able to go hiking or do other physically demanding activities.  We visited the LBJ Ranch (Lyndon B. Johnson National Historic Park) and took a tour... And I got a stamp for my National Park Passport -- Yay!  (Yes, I'm a national park enthusiast, collecting stamps from every National Park Service site I visit.)  Anyway ... interesting place, this "Texas White House"!

Shortcomings aside, the area around the cabin did offer a nice little walking trail through grasses, cacti, and oaks with a divergent pathway to a scenic road, country fence, and a prairie with grazing deer -- nice!

Next we took a drive to Marble Falls, a town we've never before visited.  We ate at a restaurant that overlooked Lake LBJ.  Wow!  Gorgeous views!!  Average food.
We checked out the nearby Balcones Canyonlands Natural Wildlife Refuge after reading about it online.  Turns out that this refuge was created entirely because of an endangered bird in the area!  I find this to be a little nutty, but what do I know?!  It's a beautiful area, and there are hiking trails which again, we were unable to even attempt.  Can you tell how sad that makes me?!  At some point we found ourselves on this narrow winding road that followed a creek.  We stopped at a scenic area where Cow Creek was crystal clear and there was a small cascading waterfall.  Looked like a great swimming hole and we had it all to ourselves, although we did not swim.  So peaceful and beautiful.  We snapped a few pictures and admired the beauty of God's creation, then headed back to the truck.
And then, IT happened.  As we were walking back to the truck, my ankle gave way on the uneven ground, causing my foot to roll outward.  I heard and felt a c-c-crunch on the outer portion of my foot.  I cried and cried and cried, not because of the pain (even though I did have pain,) but because this was my life now.  My once active vacations, reduced to driving tours that couldn't even include a stop at a picturesque creekside location without incident.  I believe I bellowed out something like "This is SOOOOOOOO SAAAAAAAAD!!"  Never having broken a bone or even sprained anything before, the reality of our new existence hit us both like a ton of bricks and we BOTH cried for several minutes.  Weakened by neuropathy caused by a chemo drug that didn't even work, my ankle gave out on the slightest uneven ground, causing me to break a bone in my foot.  I repeat, all from a drug that didn't even work on my cancer!  Ugggh.
I could move the foot, and even walk on it, though painstakingly, so Danny thought it probably wasn't broken.  I couldn't be sure, but the crunch sound had me convinced that it was.  Shortly down the road, he very sweetly stopped the truck so I could photograph some pretty flowers.  To move us on from the sadness!  He knows that I always like to snap a pic of at least one example of local flora, wherever we may be visiting.  (Oh and similarly, we like to see how many different animals we can spot when we're on vacation.  This trip:  deer, rabbits, roadrunners, giant lizards, hummingbirds, and hornets!  I know ... we're nature geeks.)  Here's my favorite cheer-me-up flower photo taken just after "the fall."

We were well into the nature preserve, so it was going to be quite some time before we were out, and even then, quite some time before we were back at the cabin.  My foot still hurt, but it wasn't excruciating ("see, it can't be broken.")  We pulled off to a scenic overlook gazebo kinda place called "Sunset Deck," and the view didn't disappoint, although we weren't there at sunset.  We were higher up than we thought we were, and could see the snaking Colorado river and Lake Travis in the distance.  Of course a picture, as is often the case, can't do it justice.  Here we enjoyed a private, tranquil (and delicious) picnic lunch before heading back to Gargoyle Cabin.

It was a loooong drive to our temporary home.  Once there, I removed my shoe to discover a large egg-shaped area of swelling and a big ugly bruise on the outer portion of my right foot.  For the remainder of the vacation, I kept it elevated and applied ice packs to it as often as possible.  We watched movies and chilled more than we had planned.  We were good with that!

For the last night that the kids were away at camp, I had booked us a one-night stay at a little inn in Round Top, Texas, so we wouldn't have to drive so far to pick them up in the morning.  We were pleasantly surprised at the beautiful grounds, charming cabin, and historic Lutheran church next door to the inn.  No gargoyles!

And finally, near the end of our little getaway, we dug in to some world-famous pie at Royer's Round Top CafĂ©!  Yummy!
Just fyi ... the lady behind me in this pic is eating quail.  I know this because her plate smelled so delicious when it was delivered that I had to ask what it was.  Umm, no thanks, just gimme my pie & ice cream please!
The foot:  fractured 5th metatarsal.  Doctor's orders:  boot and rest for 4 weeks.  Who has time for that?!  Thankfully, no cast or surgery required.  Woohoo!
Wow, I went on so long about the vacation, I've run out of time for a cancer update.  Soon, I promise!
As always, thanks for reading.  Hope you enjoyed the pictures.  I've decided to start including more of them so you guys can put faces to the names.