Friday, June 17, 2016

Improvements and Struggles

When Dr. C first offered Taxotere as my next treatment option, she said there was a once-every-three-weeks regimen and also a lower dose, once-weekly option.  I initially opted for the every three week schedule.  However, after having such a rough go of it, and honestly wanting to quit it altogether due to the sucky side effects, I reluctantly agreed to try the lower-dose, weekly option:  Three weeks on, then one week off.  This week I received the third infusion of the first 3-week cycle, and I can honestly say, the side effects are MUCH kinder on this lower dose!  Woohoo!!  I'm not having the bone & joint pain, or the teeth pain.  I'm not having the gastrointestinal issues (nausea, vomiting, diarrhea, indigestion) I was having before on the higher dose.  Yayyyy!!

I still do have fatigue.  I still do get the face rash.  I am still dealing with progressive neuropathy causing numbness and weakness in my extremities.  But at least I can be a little more active around the house and I'm not just laying around, SICK!  This is a huge improvement, and for that, I am truly thankful.

Despite all of this, and let's not forget the super duper scan results that prove that Taxotere IS working on my cancer, I'm really struggling with maintaining my "things could always be worse" philosophy.  Although I KNOW in my HEAD that I could be SO MUCH WORSE off, side-effect-wise, the absolute worst issue I'm dealing with right now is the inability to taste food.  My tongue has a metallicy-taste and it feels numb.  I can still taste a little sweetness and little hints of flavor in some things, but most foods have no taste at all.  I've been hitting the BlueBell and Ben & Jerry's, oh and some cookie dough ... and cookies ... and snowballs, but a girl can't live on sweets alone.  Well, she could, but you know, there's the obvious nutrition issue.  So, I've also been eating other things like proteiny and vegetably type things, just to get it in, but it's thoroughly NOT enjoyable!  What fun is that??

I had another bout of oral thrush, and I'm aware that that condition also causes alteration in the taste sensation.  I was thinking (overanalysing, actually) that perhaps it could be a chronic thing because my white counts are really low (all chemo's are so different ... Carbo/Gem wiped out my red cells; Taxotere is wreaking havoc on my white cells.)  I had taken Diflucan (oral treatment for thrush) with the first bout and it worked well, and quickly.  However it didn't seem to work as well for this bout, and I even stayed on it for a few days to test out my theory on it being mild yet somewhat chronic.  Ohh, the pain of thinking too much about everything!

No taste ... It's bad enough to get me thinking that I (still) don't want to go on like this, on Taxotere.  And reading more about it ... again, probably a bad idea ... but one article said that it sometimes takes months or up to a year for a patient's taste to return to normal, and that's AFTER stopping Taxotere!  Ummm ... No, no, and NO!!!

The struggle is real, and I'm not just saying that to be funny.  I have to grapple with this question:  Is this "quality of life" issue worthy of discontinuing Taxotere even though it's keeping my cancer at bay?  While I'm IN the battle, the answer is yes.  I want to taste my foooooooood!  If I'm able to step back and look at it rationally (which is really difficult,) it would seem a small price to pay to stay alive.  Right?  Yea, easy for YOU to say!  Prayers, please!  These are really needed.  I can't seem to get my mind off of how horrible it is that I can't taste anything.  It's pretty much consuming me, no lie.

With that said, I'm going to leave you with some pictures of some happy, more upbeat aspects of my life.  Perhaps sharing and discussing them will help me to focus more on the positive!

Me & Bethany on my chemo day @ MDA.
Although she is "officially" a licensed driver now, Bethany's on a mom-imposed 2-month probationary driving period.  Long story, but I will say that we've been spending a lot of time in the car together and she is improving day by day.  She has accompanied me a couple of times now to MD Anderson for my chemo appointment.  Love my pretty girl.

My single Hibiscus flower.  I have two plants that were given to me but were somehow neglected for quite some time. In my efforts to resuscitate them, they needed a pruning which in retrospect was probably done too late in the season, so I'm thinking that's why we've had no blooms ... til this one!

Duranta "Sapphire Showers"
Forgive me if I've already posted a shot of these beauties that are in my front garden.  Not loving how the plant grows (tall but not strong enough to stand alone, so it droops ... probably not getting enough sun,) but who can't love the rich, purple blooms?!  Ahhh.

New patio furniture!  Have had my eye on these for quite some time, and finally, they went on sale for a great price and with 12-month interest-free financing.  Woot!  They fit perfectly on my tiny back patio, right under the ceiling fan.

Interesting story, here!  We had to drive to Lufkin, Texas, almost 2 hours from home, to pick up the new patio furniture.  Believe it or not, there is not a similar patio set to be found anywhere but K-Mart.  The nearest K-Mart to us is in Lufkin!  Along the drive on a Sunday evening, we got stuck in a traffic jam caused by a stop light outage in a very small town.  This guy, "Dogg" honked me and this is what I saw when I looked over.  Sweet!  There is hope for this world, yet.

This is my front porch, slightly reconfigured.  The little bench shown here had to be relocated from the back patio to make room for the new furniture pieces shown above.  I think the front looks darn cute now!

Okay, this is rather lame, I know.  Just a little pot 'o' fresh herbs.  It's the little things that can mean a lot on the happiness front, know what I mean?

Bethany and I attended a survivor celebration put on by MD Anderson yesterday.  16 years as a cancer survivor -- Go me!

Alopecia Issues

It's not the first time I've disliked a chemotherapy agent!  I mean, really, who likes getting chemo?  Once I came to the conclusion that Taxotere is evil, I went ahead and allowed myself to Google it. I like to read the forums after reading the "official" and medical sites.  You can get a list of potential side effects from many sources, but to get the "real" scoop, the forums are the way to go.  Real stories.  Real people, speaking of their experiences and telling it like it is!  I especially like the ones that are specifically geared to stage IV breast cancer patients.  These ladies know what I'm going through!  They know the struggles and challenges of ongoing, indefinite treatment.

It didn't take long to find that A LOT of folks agree with my assessment of Taxotere.  It's just bad stuff, y'all!  Oh and get this.  After doing my reading, I started getting "ads" about LAWSUITS against the makers of Taxotere alleging that the drug caused PERMANENT hair loss!  Whaaaaat?  Admittedly, losing my hair, and being bald for most of the past four years, is not an issue that upsets me too much anymore.  Sure, I did enjoy having a little hair during the past year.  Because women just don't look good bald.  There I said it.  One can look good, "considering" that they're bald.  But I think most people would agree that a woman with hair is prettier than one without.  I'm digressing here, sorry.  Back to the lawsuits ... permanent hair loss has got to really suck for those who have completed their cancer treatment and expect their hair to come back.  Now, part of the hand I've been dealt in this cancer game is that it seems I DO have permanent loss of my eyebrows and most of my eyelashes.  This is seriously a question that I'm going to have to discuss with God when I meet Him in Heaven.  Really ... I have stage IV cancer.  Last year, after a miserable, months-long decline in my health, I nearly died.  Yet I was fortunate enough get on a chemotherapy drug combination that provided me with a miracle turnaround, and the reprieve lasted for many months.  During that time my hair grew back, albeit thin.  But my eyebrows never did! Why, God?  Having no eyebrows looks funny!  Yes, I know, I could paint them on, but I'm totally not handy or crafty or artsy, and honestly, I've never been very good at makeup and haircare. Thankfully, for most of my life I was blessed with naturally curly hair that didn't require a lot of work.  Good thing because I truly am rather spastic with a curling iron and not so great with a blow dryer either, although I did get pretty good with a diffuser attachment when big hair was in!  My poor girls had to tolerate my giving them lame and simple ponytails all their young lives .. but the upside to that is that all 3 of them learned how to do amazing braids all by themselves!  But back to my eyebrow & eyelash issue ... the other thing is, I'm lazy.  No, I mean low-maintenance.  Yea, that's it! I really do not want to have to do paint eyebrows on or stick eyelashes on every day, or any day for that matter!  Anyhoo ... very funny, God, very funny.  I see what you did there ... growing my hair everywhere but my eyebrows and eyelashes so I STILL LOOK like a cancer patient.  Good one.

Well that was quite the go-off on my feelings toward my alopecia!  Sorry, y'all, once I got started it just kept flowing.  Evidently it bothers me more than I like to admit.

Saturday, June 11, 2016

Update and Good News

Well hello!  Long time no blog, right?  So much to report here that I'm going to apologie in advance for what may be a lengthy rant on a hodge-podge of topics.

First, the good news, or shall I say GREAT news!  I've been on Taxotere for about 3 months now and my scans are looking good!  Lesions previously seen in my liver have all decreased in sie, and there is NO pleural effusion noted.  Wowwww!  The bones and lungs are reported as "stable" which is not NED (no evidence of disease) but pretty happy news nonetheless on the stage IV cancer front.  Additionally, my tumor marker (CA 15-3) is down to 35 from a previous high of 51 ("normal" range is 1-25, but a decrease is still a decrease, let's be honest.)  I really, really needed this news!  Of course, you say, who wouldn't want to receive this kinda news?  Right!  But you see, I've found Taxotere to be a horrible, nasty drug and without seeing some sort of positive results, I was considering getting off of it.

I was put on a every-3-week regimen.  It didn't take me long to come to the conclusion that I absolutely hated the drug.  It affected what felt like every part of my body and it really brought me down, leaving me emotionally and physically drained and unhappy.  Digestive issues such as nausea, vomiting, diarrhea and constipation; deep, intense bone and joint pain; weakness and exhaustion.  I've already covered the issue with my sense of taste being altered.  At some point this worsened to the sense of taste completely leaving me, oh and my tongue feeling numb and tingly, as a result of oral candiadiasis (thrush.)  What fun!  My eyes watered excessively and my eyelids were itchy, irritated and peeling.  I was hoping/expecting that I would no longer have the "Carbo-Glow," a purply-red face rash that developed a day or so after each infusion, however, the Taxotere also caused the same reaction!  It's a little uncomfortable ... an intense heating of the cheeks that kinda sorta makes you cold as a sunburn would, but it's more of an embarrassing appearance issue than a physical problem.  Taxo-Glow.  Yay.  But hey at least I'm not tender to the touch all over along with the redness.  There's that.

I've put off writing because it's so depressing what comes out of me if I try to blog when I'm deep in the throes of chemo misery (case in point, see my last post.)  So what you're getting here is an abbreviated version (you're welcome!  Thank you, Kim, for small favors, right?)  The side effects I've listed were collectively short-lived, not all simultaneous and of varying durations.  Some started the day of the infusion and all were improved by about day 10 of the 21-day cycle.  Additionally, they seemed to get worse with each successive infusion -- the recovery came more quickly after the first infusion than the next two, taking a full 10 days after the third infusion. However, I can't stress enough how intense this period of time was, and just how low it brought my psyche.  Time slowed to a crawl and the week to 10 days of hell seemed to take forever to crawl out of.  I was ready to give it up!  I was thinking this just isn't living, and I don't want to take it anymore.

I feel the need to explain further, lest you think that I'm just a wimp.  Plenty of people get through chemo, even worse ones than Taxotere.  I know this.  But with stage IV (metastatic) cancer, you have the added factor that there is no end date.  There is no magical number of infusions when you'll be done with treatment and can go back to your life.  I'm definitely not downplaying this, the most common and generally well-known cancer treatment path.  I'm aware that every cancer treatment is life-changing.  No one comes out of their cancer journey unscathed.  However, the permanent nature of one's stage IV cancer treatment gives us "metasurvivors" (I personally hate that term, but it's a thing) a unique perspective that is difficult for others to completely comprehend.  I don't wish true comprehension of this on anyone, for it requires that you experience it firsthand!

I'm also starting to think that the longer I'm in treatment, the less tolerant I get of the side effects.  Perhaps it's a psychological issue.  Most likely, yes!  It just wears you out, ya know?  Super survivor chicks like to say "Cancer doesn't define me!" and other such statements.  And Ok, sure, it doesn't define me, but doggone it, it sure has taken over so many aspects of my life!  It's exhausting.  And after years and years of treatment, it gets old.  Really old.  I'm sure anyone with a chronic illness can relate to this.  Everyone has at least one thing in life they are dealing with ... maybe even issues that are not visible/obvious to others.  (no longer my case, because alas, I'm bald again, since about day 10 on Taxotere.)

I'm going to call it a day on this blog post.  I will say that the scan results and decrease in tumor marker has given me the strength and resolve to continue on Taxotere, despite the fact that it's of the devil!  Well, that, and I'm now on an altered regimen that actually is more tolerable.  Details later.

Goodnight y'all!