Tuesday, October 10, 2017

Kim died March 16, 2017. Here is what we posted on her personal Facebook page followed by her eulogy.

Kim you have left us with hearts ripped open, but you left us better off than we would have been without you. You will live on in us and your impact in our family will last for generations. Thank you for giving all you had. We are forever changed by you.Bye for now sweet baby. We will love and remember you forever. Danny, Shea, Christa, Bethany and David.

Here is Kim's eulogy written by her husband Danny:

First off I'd like to acknowledge the complete impossibility and the absurdity of summing up a magnificent human life in a short thing we call a eulogy.  It's such a disservice to a very full and well lived life and to God's wonderful creation.  You simply cannot begin to even touch the surface of someone's lifetime in a 5 to 10 minute speech. 

But because it's what we do, here is an incredibly incomplete attempt at remembering Kim. 

Kim lived with stage 4 breast cancer for 11 years. That is so, so, much longer than we had anticipated and far longer than typical.  In the end she had over 13 different chemo therapies and most of them worked for a time.  We have to thank the doctors, nurses and staff that made this happen but we attribute the multiple successful treatments to God who in His mercy gave us and Kim a little more time.   Here is a little bit of how Kim chose to use that time. 

Kim sure did know how to live.  She was always eager to move ahead and get on with life. She was quite the planner.  Nothing made her happier than planning a vacation, a party or a holiday get together.   When she was first diagnosed with cancer 17 years ago, her planning went into high gear.  

Vacations, parties and all kid activities were now mandatory.  There would be no taking life for granted.  Life for Kim had changed. 

Almost all vacations included invitations to extended family.  There was also no more relaxing on vacations or weekend trips.  Every day would be packed with seeing God's creation or doing things that might just get you killed if you are not careful. From zip lining over canyons in Texas, to white water rafting in Washington state, to day hiking down into Talullah Gorge in Georgia and even, with the help of her husband, forcing her mom and young children head on into a 5 to 6 foot Hawaiian surf in small kayaks.  Whatever it was, it had to be done because you may never get the chance to do it again. 

Christmas was Kim's favorite time of year.  So as expected, Christmas parties grew to unexpected sizes.  You never know when it will be your last.  So there would be lots of food and lots of people.  Someone once asked Kim, "so if you just talk to someone once, they get invited to your Christmas party?"  Kim thought, "what a crazy question... of course they get invited."  Unfortunately like so many things, those parties eventually had to stop. 

She was also a gift giver and Christmas allowed her gift giving to flourish.  Every gift she gave no matter how small came with much thought and love.  Nothing made her more happy than finding the perfect gift and she worked hard to make sure everyone got something from her.  This last Christmas, even in the troubled state she was in, her main focus was to make sure everyone she cared about had a gift from her.

But Kim's number one priority was her children.  She is their number one fan in anything and everything they do.  Nothing makes Kim more happy than to watch her kids flourish; and flourish they have.  From cheering Shea on as a young cheerleader, to bravely entering creepy dives of New Orleans to watch her sing and make music with her future husband.  To now seeing her become a mom of her own to six kids and counting. 

For the last 7 years Kim has been a football mom at almost all levels.  With two daughters in band and a son on the field, August through October put Kim in the stands multiple times a week and she loved every minute of it.  She went to almost every game she could, and she was always disappointed those rare times when she couldn't be there to support them.  This last year had Kim going to Freshman high school games during the week to watch David in one of the best seasons of Kingwood freshman football.  Then the next day heading off to the Varsity High School games to watch Bethany rock the stadium with the Kingwood High School Drumline and band.  Then waking up on Saturday to head down to the U of H game to catch Christa and the Spirit of Houston band fire up the crowd for the Cougars.  Then finishing off the week with family and NFL football on Sundays.  This last year, though sometimes exhausted and barely able to climb the stands, Kim pushed on with a smile and a love for her children that cancer and chemo therapy could not yet stop. 

So how does a loving God allow someone like Kim to die?  If He is good, how could He take Kim away from us, away from her family and away from her children?

It's a feeling or thought many of you may have today.  But that's not the way it is.  God was not surprised that Kim got cancer.  He was not caught off guard by her original diagnosis in 2000 or cancer's return in 2006.  And He was not unaware of how and when she would die.  When did He know?  Did He find out a few months ago?  No, He knew at her birth.  He knew from the beginning of time.

So what is a loving God to do?  Should He have hidden her away so that no one would have to face the heart ache and pain of losing her?  

No, instead, He gave her to us.  We are all here today because we knew Kim or were blessed through her in someway.  I think we would all agree that it was better to have known her than to not.  

There is also another side to that. God gave us all to Kim.  You have all made Kim's life so full of love.  You have all in your own way made Kim happy and brightened her days.  God arraigned your life so that you would have an impact in Kim's life.  Whether you directly blessed Kim or you cared for and befriended one of her children or are now here to comfort her family members, God put you here today because of Kim.  Then He went one step further and gave His only son to die for Kim and us so the we could escape the total death we deserve and have eternal life and live with Him and each other forever. 

We do have a loving God and He made sure to surround Kim with loving caring people.  There is nothing more sacred than to care for a child of God.  She belongs to Him and she always has.  Thank you for being a part of her life.  

I'm not sure exactly how things will be in heaven. But if God allows parties, vacations and gift giving, I promise you, Kim is already overwhelmed with the possibility of what she can do for you when you get there.  And know that if you just talked to her once, you are her friend.  I personally can't wait.  

Through the redemption of our Lord and savior Jesus Christ, may we all join her again one day in the biggest celebration of all.  


Danny

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.

Friday, November 11, 2016

Ups, Downs, and Updates

What's up?  Well, I just celebrated another birthday, so that must mean something is going right!  It's my last year as an official "40-something."  Unofficially, this may go on for at least a few more years.  :)

I also just added shampoo to my grocery list.  Yea!  It's satisfying to use shampoo on my head as opposed to washing my entire virtually-hairless body with the same body wash.  I've been gradually getting some hair back since getting off of Taxotere, although it's too sparse and a lot more grrrray than I remember.  Not ready to rock this look just yet, but fortunately, the weather is cooling off here in Texas so it's still headwrap season as far as I'm concerned.  It seems I'm always cold anyway!  Perhaps when Spring comes around, I'll feel more comfortable both physically and psychologically to go without any headwear.  And maybe my hair will be long enough and cover enough scalp to justify a color job.

I still have no eyebrows or eyelashes.  Why this is, I really don't know, but I try not to think about it too much.  I can't give too much thought to my appearances, or I'll cry.  (I also can't bear to look at old pictures from my past, or I'll cry.)  Issues.  Not dealing well with them lately.  Try as I might to wear nice clothes and pretty headwraps and jewelry and such, I never feel good about myself and how I look.  And that's because I look like death warmed over.  I look like your stereotypical dying cancer patient:  thin, frail, and cachexic (if you're not familiar with it, look it up ... it's your new word for the day.  You're welcome!)  My neck and chest and hands are sunken in, and I suffer from noassatall (There you go, another new word.  Just kidding, I made it up, but you have my permission to add it to your vocabulary because it's a good one!)  I am still dealing with over-watery eyes which has caused me to stop even trying to wear any eye makeup because it comes right off in a fairly short amount of time.  As I've said before, I'm never far from my tissues because the water just pours out and sometimes people mistake this for tears.  Which of course it is, except I'm not crying.  I've self-diagnosed this as lacrimal duct stenosis, but am I really up for the procedure of having stents inserted in my lacrimal ducts??  Sometimes I AM! but most of the time I am not, so I live with the condition and resent my circumstances much of the time.  Wow this has really turned into quite the rant!

I think if it weren't for my kids and their activities and events, I just wouldn't go out much.  As I've said many times before on this blog, cancer has taken so much away from me.  There is really little of the old me left.  I'm in here, but I miss my old self.  I miss hair, eyebrows, mascara, happiness, energy, strength, beauty, vacations, dancing, love, sex.  I miss having a good memory and the ability to think clearly.  I miss feeling respected.  I miss being team photographer.  I miss being a bus chaperone.  I miss big family gatherings at my house.  I miss the ability to wear a variety of shoes.  I miss being outgoing instead of mostly keeping my head down and avoiding eye contact.  I miss the days when cancer wasn't such a huge part of my life.

Well now I've gone and made myself sad.  I know, I know, I need to focus on what I CAN still do.  In my head, I know this to be true, but it's not always easy.  Good thing I still have opportunities that MAKE me get up and out of the house, am I right?  I am down, but things could be worse.  For some reason, I am still here, having another birthday and checking my "sick" teenager out of school and typing this blog post on my new, big, and bright birthday-gift laptop.  I voted.  Last week we got to see David play his final freshman football game and hear his name called a couple of times over the stadium speakers.  Go Mustangs!  Now he's moving on to a completely different sport, wrestling.  We watched as Bethany played percussion at her last high school football game and we proudly viewed her band make it to the finals at an area marching contest.  We visited and toured a way-too-far-away campus as she considers where she will attend college.  Go Warhawks!  We excitedly check the mailbox for the acceptance letters and scholarship offers that are starting to arrive.  Last night we enjoyed a concert by the University of Houston's Spirit of Houston and visited briefly with my college girl, Christa.  Go Coogs!  And I even "won" a dinner out and hotel stay at the silent auction.  What in the world will I do with myself when all the kids are out of the house??  I know there will be less conflict and less mess!!  But what's that they say about a messy house and happy life?  I forget ...

Alrighty.  A cancer update.  I had my second go round of Gamma Knife Radiotherapy and supposedly they "got it all."  Again.  Hopefully that means that when they review my next MRI, scheduled for the day before Thanksgiving, there will be nothing to look at but a healthy brain, free of "lesions" or "masses."  Right?  I have decided that I will not have any more Gamma Knife procedures.  Why?  Well I guess they didn't give me enough sedation last time!  The process of attaching the head frame needed before the actual radiation is administered is a painful and awfully barbaric procedure.  The first time I did cry but afterward didn't recall it being that bad.  This last time I also cried from the pain and ended up being in the frame for 4-5 hours due to the extent of the tissue that actually had to be radiated.  And I was thinking, just because a person is sedated and doesn't remember some aspects of a procedure, doesn't mean it didn't happen.  It seemed to take a long time to heal afterwards and my head was sore for longer than the first time.  I decided that the neurosurgeon and his team of assistants should be required to EXPERIENCE the procedure before PERFORMING the procedure.  I have a strong feeling that they would be much gentler with patients after experiencing it themselves.  The application of the frame ... the tightening ... felt like my skull was being squeezed and it might just crack.  Ever heard the phrase "I felt it 'down to my bones'?"  This is it, quite literally.  The snapping on of the different headpieces (I know this is a complete and total dumbing down of the actual terminology, but work with me here) caused a vibration, a jolt, to be felt IN MY TEETH.  Really bizzaro, and I just felt like saying "HELLOOOO!  Human in here!  Can you guys take it easy a little bit?"  It was all too much to take.

After doing some research, I found that a different procedure, well actually it's still stereotactic radiotherapy but using a different technique, is a LOT more appealing.  The CyberKnife supposedly does the same thing to tumors, but does NOT require that a headframe be screwed into your skull beforehand.  I'd call that a win-win.  And what do you know, they are doing it at Baylor College of Medicine in Houston, which is where I'm being treated now.  Join me as I shout "Woohoo!  Bring it on!"  Wait, I can't believe I just said that.  I'm really not that enthusiastic about it, but zapping tumors without needing a metal frame sounds like an improvement to me.

Lastly, the Ibrance/Faslodex chemo combo seems to be working on the rest of my metastases.  Still no more lung or cough issues, and my tumor markers are trending downward!  Yes!  Unfortunately the Ibrance is taking a huge toll on my blood counts, specifically my white cells and platelets.  There were so low that I had to postpone starting my 2nd chemo cycle by 2 weeks!  Instead of having just one week off in between cycles, I had 3.  Not good for the cancer treatment.  Low counts of course are contributing to my fatigue, and I'm more susceptible to infection.  Trying to hug less and not shake as many hands!  I am over the shingles, which thankfully was a mild case of short duration, but this week, I was "blessed" with a sudden-onset 103 degree fever (unknown cause.)  Again, thankfully, this was short-lived and after starting on 2 biggy antibiotics (Cipro & Augmentin,) I no longer have a fever, but I do, however, have pretty severe diarrhea and a general icky feeling in my tummy.  Ohhhh the joys of cancer treatment!!!

Fingers crossed that nothing else happens between now and my next procedure, the MRI of the brain on November 23rd, that will mar my nearly 2 weeks off from anything cancer-related.

Thanks for reading.  Love y'all.


Sunday, October 9, 2016

Random Thoughts, Hope, and This Week

It's amazing how little comments and brief moments can produce so much hope!  I discussed with Dr. C a couple of weeks ago how concerned I was that the brain metastases seem to be so much more aggressive than the rest of my metastases.  With each MRI, there is growth and new lesions to worry about treating.  She explained that first, the brain mets have been untouched by any treatment, since chemotherapy doesn't reach them.  And second, the MRIs done at the time of Gamma Knife Radiosurgery are much more "sensitive," or higher resolution, as I understood it, than a regular (not the correct medical term, I know) MRI.  So it's expected that the Gamma Knife-time MRI done on August 17th may show more or even larger lesions than the first MRI done on July 5th. Surprisingly this information gave me some hope.  Sort of a "Oh, it's not as bad as it seems" moment.  But now that I'm putting it all on screen (paper would be the wrong word here!), I'm like, wait ... I've had 3 MRIs.  July 5th, August 17th (at time of GK,) and September 13th.  The last one on September 13th still showed growth.  Soooooo, scratch the hope!  Just half-kidding, here, there is always hope, right?  Right?

I have a lot of people praying for me, and I feel the results. I am feeling better already on my new treatment of Ibrance and Faslodex!  No more coughing, and I just have a feeling of overall improvement.  I need to work on increasing my activity level and regaining my strength, and I'm not only motivated to do so, but I feel up to it.  My issues with nausea have lessened, and my pain is also improved although prolonged activity of any kind, or lack thereof, kicks in the discomfort.  I am SO thankful for these improvements!

Here is a link to an article about the new drug I'm taking, Ibrance.  I don't think I've shared this here before (if I have, sorry!):
http://www.curetoday.com/articles/fda-approves-ibrance--plus-faslodex-for-hormone-receptorpositive-breast-cancer.
It describes my exact cancer and the exact combination of drugs I'm on (Ibrance & Faslodex) now. And I even more recently read about a couple of even newer drugs that are similar to Ibrance that are showing promising results as well. This just out on one of them: https://www.eurekalert.org/pub_releases/2016-10/esfm-rip100716.php.  Yayyy!  Keep the metastatic breast cancer treatments coming!

Speaking of new treatments, I'm going to briefly swing back onto my soapbox about the pink ribbon themed breast cancer awareness crusade.  There is so much backlash toward pink ribbons and pink events in October, that there are now fewer fundraiser walks/races happening.  This is not what we want!  Of course there will always be organizations that misuse funds.  This is true of all charities and not only a few well-known ones in the breast cancer world. However, you can't deny the fact that the big K has donated MILLIONS of dollars to breast cancer research. Unfortunately, many folks have withdrawn their support to not only Komen, but to other breast cancer funding entities as well.  How can de-funding research possibly be a good thing in the long run??  I'm seeing "pink" events, but not hearing about how much money was raised at such events.  I think the public is now well "aware" of breast cancer, unless you've been living under a rock.  It's about more than awareness-- Yes, early detection does matter, but bottom line is WE WANT A CURE!  Please donate, and donate wisely. Women are still dying and people like me are still fighting this very complicated disease.

It's only recently come to my attention that very little research monies are directed at metastatic breast cancer.  I guess because there are fewer of us than early stagers?  I am happy to see articles such as this:  http://mbcn.org/2016/10/03/mbcns-metastatic-breast-cancer-research-leadership-award-2015-recipients-included-johns-hopkins-dr-andrew-ewald-and-baylors-dr-matthew-ellis/.  And even happier to be a patient at Baylor College of Medicine's Lester and Sue Smith Breast Center!  I have mentioned before that the physicians there seem to be more intimately connected with research, and there you have it.  Dr. Ellis actually told me that he wanted to use my cancer cells (obtained during the liver biopsy) in the laboratory for research purposes.  I wholeheartedly agreed, of course!  (and then I asked if the mice would be named after me, because I sometimes have a sick sense of humor-- but seriously, I think it's the least they could do.)  If I have to go through all that I have, I might as well donate some cells along the way so docs at Baylor and MD Anderson can use them for the good of all patients like myself!  I mean really, who needs extra cancer cells just existing, multiplying, wreaking havoc, and going to in waste in their liver??

I've seriously digressed, but these are my thoughts, and I am happy to share them with all of you who will read them!

This week ... is kind of a big deal.  I've had so many of those lately. Grrr!  I'm currently off of Ibrance, as it's a 3-week-on, 1-week-off schedule.  As I mentioned before, another Gamma Knife is scheduled for Wednesday, but Monday's labs will determine if my white cell counts and platelets have bounced back up to adequate levels.  They were fairly low two weeks ago already, after just a short time on Ibrance, so it'll be interesting to see where they are now.  I must have been pretty low, because I'm now on an antiviral to combat shingles!  Why, God, why?!  Anyway ...Hopefully all is good so the GK doesn't need to be rescheduled.  I am already anxious about it, wondering if anything has grown in the brain since the last look 4 weeks ago, or if anything new has popped up.  The way it's been going, there really is no reason to believe that they've just stopped growing and multiplying, except that I've had no neurological symptoms, and LOTS of prayer has been going up.  I know that prayer can work miracles, but only if it's God's will to do so.  I shall see, right?

Meanwhile, I'm still going through life and living as much as I can. Some recent moments...


God's handiwork, right at my mailbox
Great view of the city of Houston from TDECU Stadium @ University of Houston.  

Our reason to attend a UofH football game!

 
The guys WAITING... long game delay due to weather!















My mom visited!

Proud of my baby, a KHS freshman football player


Me & David














Me & my girls at Bethany's Senior Night football game, and, coincidentally, KHS's Pink Out game
My favorite snare drummer, wearing her letterman jacket on Senior Night.













Pink drumsticks for the Pink Out game.  Love all these kids.







Finally a fall-like day-- my view from my back patio.  Ahhh.
Self-caricature by my oldest daughter, Shea.  What talent!  Wish I could see her more often!


Some examples of her work at a local festival in Katy, TX

























Tigger loves me!

Saturday, October 1, 2016

The Latest ... and Whac-A-Mole

Well hello there!  I was so happy to realize today that I have NO APPOINTMENTS of any kind this coming week.  Woohoo!

I started my new chemo, Ibrance, a couple of weeks ago, and I do feel some improvement already in that I'm coughing less than I was.  Hey, it's a positive, and I'll take it.  I'm also on Faslodex injections every 2 weeks.  One in each glute -- yuck!  Yes, I'm a wuss.  During the "procedure," (haha) I have to mentally tell myself that it's not that bad, it'll be over soon, I can take it, etc.  The stuff burns going in, takes a long time to be administered, and leaves a bruise and then a knot.  Not nice!  Not nice at all.  Six years ago, when I first received Faslodex for the first time, I remember it making my urine and breath and sweat have an unpleasant odor. Well, the Faslo-stench is back.  It's a mediciny, chemical-like smell. Hard to describe but it's extremely noticeable, first in the breath, than even more powerful in the urine.  It seems to reek from my core! for about 3-4 days, and then tapers off and finally completely leaves at about day 7.  Of course the doctor had never heard of such a side effect.  When I have something this noticeable, I Google right to some stage IV cancer patient forum-type websites that are out there and sure enough, I can always find others with my same side effects.  This comforts me, or sometimes scares me, but at least I know that I'm not just crazy.  Or there are others just as crazy as I am!

The liver biopsy went well.  No complications or issues, just a loooooong day.  Results so far show that my cancer is unchanged from previous biopsies, as far as markers and the possibility of expanded treatment options.

I decided, once again, to NOT seek the clinical trial treatment path. I simply cannot take a risk with a drug with unknown clinical success over something that has been proven to work for at least some patients.

I am so, so happy to be reunited with Dr. C at her new clinic.  I like the smaller and more personal nature of the new facility, and I really like how the physicians seem to work more closely with breast cancer researchers than at MD Anderson.  I'm pleased with my other doctor there, as well, Dr. E, who is working alongside Dr. C in managing my care.  It's a completely different environment than I'm used to, but I feel like I'm being well-cared-for.  I am still under the care of some specialists at MDA, such as my radiation oncologist and my neurologist.  And my neurosurgeon, although not officially an MDA physician, remains the same, as he works with my radiation onc on the zapping of my brain metastases...

Speaking of brain mets ...
This, by far, has been the most scary and anxiety-producing issue I've faced thus far on my stage IV cancer journey.  I had no idea how much the treatment diverges once cancer spreads to the brain. Brain mets is not treatable with chemo drugs used to treat all other areas of metastasis, because the chemotherapy agents are unable to cross the blood-brain barrier.  I've determined that treatment for brain mets is akin to a high-stakes version of Whac-a-Mole.  They locate a lesion, and go GET IT.  Then, oop, there's another one --- GET IT.  Oh, there's more, let's zap that one too.  Radiation is the tool, the "mallets."  The metastatic lesions in my brain are the "moles" that are pounded whenever they pop up.  You get it.  I know it seems a rather crude analogy, but I get the feeling this is how it works.  At least so far, in my case.  It's not customary to scan the brain for routine restaging scans.  So until you develop symptoms of brain mets, they don't want to have a look into your brain.  It seems to me such a reactive treatment instead of a proactive one. I'm going to add here that I believe NONE of what several physicians have told me regarding the small, 4-5mm lesion NOT being the cause of my one and only seizure on July 4th. There is just no freaking way that the two are completely unrelated and coincidental!  Nope.  The seizure was my brain's way of saying, "Hey!  Something's going on here!  Something ain't right!  Hellooo, have a look at me!"  It was clearly a sign.  Just saying.

After my gamma knife radiosurgery procedure, where growth of the initial lesion to twice its previous size and the appearance of 2 more lesions were found on the MRI, I was scheduled to have a follow-up MRI 4 weeks later.  Unfortunately, another small (5mm) lesion was found.  And even more unfortunately, yet another, large one was found not in the brain proper (yea, I know, that's probably not an accurate medical description,) but in the "dura" which is the outermost lining of the brain, closest to the skull.  The tumor measured 2.5 x 1.2 centimeters, and there was some swelling noted in the its surrounding tissue.  I'm really less than thrilled that this one can be measured in centimeters instead of millimeters. Compared to the previously discovered lesions, this one LOOKS huge on the MRI images (at least to my untrained eye.)  My neurosurgeon said he would try to Gamma Knife both of the new lesions, but the dural one, being so close to the skull, is not usually amenable to Gamma Knife Radiotherapy.  So, the consensus among my team of doctors & surgeons is that they will Gamma Knife both lesions, but will probably have to perform a different procedure on the dural lesion to thoroughly obliterate it.  This would be "electron radiation."  All that I know about that is that it's more effective on a superficial lesion such as this than GK, and it's less damaging to the rest of the brain than whole brain radiation.  Oh and it will likely burn my skin and will definitely prohibit hair from regrowing in the area that's radiated.  Just greaaaaat!  The large dural lesion is in the frontal area of my head, so not certain what this will look like on me, but suffice it to say that me & my headwraps will remain tight.  Like, forever.

As scary as the Gamma Knife procedure was, it turned out to be not as bad as I thought, so yes, I'm doing it again on October 12th.  I asked Dr. Neurosurgeon "How many times can one have Gamma Knife?" and he responded that it's "virtually unlimited!"  He's had patients have repeated GK for 2+ years!  And I wonder, what is really left of your brain tissue after so much radiation?  But what do I know?!

Soooo, you may be wondering, OK Kim, but how are you FEELING?  I'm having some pain and I do get out of breath very easily.  I'm battling intermittent nausea and sometimes vomiting, too, especially with pain medication.  I have to rest often and I sleep more hours than I used to require.  However, I am finding ways to go places that I deem worthy of the discomfort (my kids' events, out to eat occasionally, and, well ... that's really all. It's a short list!)  So there's that!!!  :)

The anxiety that is hanging over me has been difficult.  I am supposed to be watching out for any kind of neurological symptoms that could indicate growth of the brain lesions, such as sudden onset weakness, numbness, headache, vision issues, etc.  I feel like a ticking time bomb!  Gotta. Keep. Going.  Like the Energizer bunny!  If you've seen me lately, you'd realize this statement is quite comical!  I am literally, the opposite of the that pink bunny.  Just a couple days ago, I had a very embarrassing, near fall at the high school football stadium.  Uggh!

Some advice for all you healthy folks out there:  enjoy life and appreciate your abilities, while you still can!  You never know when this will be taken away from you!

Friday, September 9, 2016

Updates & So Much Happening

Hello all!  Again I've waited entirely too long to post, so I have a lot of news.  No way I'll remember everything that's going on, but here goes.  It's probably better this way because I like to think I'll remember, but the details tend to get lost and y'all end up getting less of them.  You may even prefer this way, right?!

My every-three-month scans finally happened on August 23rd.  As I expected, there's been progression.  I could feel this happening even while I was still on Taxotere, which made the wait especially excruciating.  In my left lung I have increased pleural thickening, new nodules, new enlarged lymph nodes, and new loculated pleural effusion (my understanding of this last item is that it's a pleural effusion-- fluid in the pleural space-- that's thickened so it's not removable with a thoracentesis [procedure where a needle is inserted into the pleural space and the fluid is sucked out] that's worked for me in the past.)  My right lung also now has a pleural effusion and increased pleural thickening.  So sad!  My right lung has thus far escaped my cancer and has, during a very low point in my cancer journey, done a bang-up job at compensating for my highly-cancer-burdened left lung.  Also, my liver has several new lesions.  My liver function labs are good, however, so I can be thankful that it's still working fine, even though new spots are visible on CT scan.  Oh, and by the way, I have a "Stable incompletely-healed left posterior 12th rib fracture."  Good to know!  I was never notified of this, so who knows how long that's been there or how it happened.

Interestingly, when the doctor came in with the test results, she said they showed "slight progression," then went on to spend at least 10 minutes explaining it all!  Hmmm ... Perhaps compared to others who are worse off than me??  Or maybe she sees it every day and it truly is slight progression?  Doesn't sound like or feel like slight progression to me.

Both the CT scan and the bone scan proclaim that my "diffuse, multifocal, osteous metastatic disease" is stable.  I call BS on this! How do I know this?  Because I'm having pain.  I haven't had bone pain in over 2 years, and now I do.  Clearly something is going on. Left femur, left hip & pelvis, left lower back are at times requiring pain medication (uggh.)  And who can forget (not me! haha) a couple of years ago, my CT and bone scan showed stable disease in the bones, right up to when I developed a symptomatic growing lesion in my lower spine which required radiation.  This showed up on an MRI, but not the CT or bone scan.

The recommendations were as follows:  see the clinical trial doc on September 6th, as planned;  give my body time to recover from the Taxotere.  At first this sounded like sound advice.  But the more I thought about it, the more it didn't.  I have breathing issues that I attributed to fluid changes in the lungs that have now been confirmed with CT.  I have bone pain which I have not had in years.  My tumor marker is slowly climbing.  My activity level has been reduced to a pathetic level-- I get short of breath very easily.  I really don't feel like I have the luxury of waiting.  I feel like I already have been waiting for quite a long time for clinical confirmation of what I've known in my gut for many weeks.  All of this, and also considering the rapid progression of my brain mets... let's just say I'm not doing well.  I seem to be the only one in a hurry to get going on another treatment.  There doesn't seem to be an urgency, besides my own!

My doctor also went over some treatment options (to be decided and carried out after I see the clinical trial doc.)  There were three. My understanding was that these were the only three left for me. For the first time ever, my doctor didn't say "Oh, we have lots more options available for you."  We discussed the three drugs, and their respective side effects and potential issues.  It was so discouraging. Three.  That's what I'm down to.  :(

It all seems to be happening so fast!  On July 28th, I had lunch with a friend.  I had to look up the date, because I distinctly remember telling her that I felt "inklings" of cancer progression.  I could feel changes in my lungs.  The "inklings" quickly turned to true (no doubt about it) shortness of breath, increased coughing, and problems with "running out of air" when I spoke a long sentence or yelled upstairs to the kids.  Then the bone pain.  And of course the fatigue that didn't go away, even after discontinuing the Taxotere. Worsening ever since.  It's like to me, it's all moving so fast, but no one seems to understand/believe me.  Was about to insert another sad face here, sorry.  You get my point.  I'm in a pretty bad way, can you tell?

After much deliberation, I've decided to look into treatment elsewhere.  The time has come in my metastatic breast cancer journey where I need to see ALL of my options.  I have to have more.  I'm now seeing another doctor, in addition to the doctors I see at MD Anderson.  I'm being seen at another facility, because perhaps they have research studies going on that MDA doesn't.  Maybe having some fresh eyes look at me and my long and complicated treatment history can uncover something new. Treatment in a different direction, with a different approach, perhaps.  Ironically, my doctor leaving MD Anderson has turned into a blessing, allowing me to think outside the box and to see the big picture.  With my favorite doctor no longer there and my treatment options dwindling, I feel the freedom to broaden my options by considering facilities other than MD Anderson for my care.  God is at work, even when our circumstances don't make us feel like He is.

As it turns out, my appointment with my MDA clinical trial doctor had to be rescheduled because my Guardant test results (a blood test ordered after my first visit with that doctor) weren't back in time.  So I'm still kind of in limbo with that treatment avenue.  In the meantime, I have seen another oncologist who recommended that I have a liver biopsy.  The idea is to get a fresh, updated look at the cancer that's growing in my body right now.  Cancer cells can mutate over time and certain characteristics and markers noted in a person's original tumor tissue can also change.  In my case, my first breast biopsy and subsequent mastectomy were 16 years ago in 2000!  I've actually had, I believe, 2 biopsies since then, the most recent being in 2010.  One was in 2006, taken from a new and noticeable lump right on my mastectomy scar, when I was first diagnosed as metastatic.  Another was in 2010 when I developed palpable lesions in the soft tissue on my left side, right about where the left lung drains.  Not only can your own cancer cells change, but the testing that can be done in pathology has also grown to include genetic testing, etc.  I'm scheduled for the liver biopsy next week.  Oh boy!

Next week's gonna be a rough one.  Three of the five days are entirely taken up with my health issues.  Monday, the biopsy.  Two hours to pre-op, short actual procedure, then 6-8 HOURS post-op observation!  Because it's the liver, a very vascular area, that a needle will be stuck into and tissue removed.  Tuesday, another doctor appointment and I'll be starting my new chemo drug, Ibrance!  It's been approved by my insurance company, which I was told could potentially be an issue.  Let me say here that I was going to have to open a big can of whoop-ass on them if they didn't approve it.  This is my life, people!  Literally, could be life or death.  Thankfully I didn't have to do that.  The Ibrance is by mouth, so I get to poison myself, at home!  Woohoo!  It will be in combination with 2 other drugs, which are injections.  I should be receiving the injections Tuesday, as well.  I'm a big baby when it comes to injections, not gonna lie.  I'll try to be a big girl this time, promise.  Tuesday evening, I have my four-week-post-gamma-knife MRI of the brain.  I'm nervous about this one, because my last MRI showed progression after just 6 weeks from my first one.  Then Thursday, I see Dr. Karp at MDA, the clinical trial doc, to get my Guardant results and word on if I'm eligible for anything.  Unfortunately, a diagnosis of brain metastases tends to disqualify a patient from many research trials except for some Phase 1 trials, which in my opinion would be last resort.  That is, after I've exhausted all existing drugs that have been proven to work for some people.

So, so much I wanted to cover here, but I see this is already pretty long, AND, I'm tired.  Thanks for reading!  We could use some prayers-- it's been pretty rough on me and the family.

Friday, August 19, 2016

Gamma Knife ... Check!

Gamma Knife ... CHECK!  Well, I made it through Gamma Knife radiosurgery two days ago.  I admit, it was scary, especially after I Googled it and looked at "images."  How dumb was that?!  Alright so, some of it was helpful information, such as this graphic:


 Well-written, informative, good to know.   Thanks, Google!


Others, such as these of actual other people goin' under the Gamma Knife ... well, let's see.
Smiling

Smiling

Smiling


Notice how I've captioned each of these.  These folks are all SMILING for the Gamma Knife photo.  I showed some of these to my 14-year-old son the night before my procedure, and it was he who said "Why are they smiling??".  And then I said I didn't know, but I thanked him for pointing that out.  Because if they're all smiling, it mustn't be that bad, right?




My hero
Then there's this guy.  I only WISH I could face cancer with this kind of intensity.  Dayum.  You rock, fellow Gamma Knife patient. YOU. ROCK!


And then there's this wimpy chick-- me.  Here they had applied the EMLA cream onto the four sites where the frame would be screwed into the skull.  No big deal, just numbing cream onto the skin.  A sort of pre-local-anesthetic anesthetic.  Once it was applied, I just sat there and Danny was smiley-chuckly.  I'm like, "What?"  I kept seeing something in my periphery, up toward the forehead, but I was thinking that I was getting glimpses of the cream.  He says, "Look at it with your phone."  So I do, and feel goofy as heck because I was unaware that there were 3x3 gauze pads stuck to the cream in each spot.  Have some mercy, nurses!  Aren't you supposed to maintain some level of dignity for the patient?  :)  For good measure, I added more goof to my facial expression.  Do not look at my old lady neck.
I told you not to look, and you did anyway!  Ewwwww!

Next, the time had come for the wire frame to be applied to my head.  Here's me and Dr. Frankenstein, I mean Dr. Shedden.  NICE guy, this neurosurgeon, (and very experienced and very gentle) but considering what he's doing to me, and I cannot get the name Frankenstein out of my head.  I mean no disrespect, Dr. Shedden, honest.
Do you SEE this contraption that is now attached to my head??  Thanks to the sedation, I'm real fuzzy on what exactly was going on. All I know is that at some point, there was intense pain, although thankfully it was short-lived.  I think that was when he was injecting the local anesthetic.  Or it may have been when the screws were being screwed into the skull.  It makes more sense that it would be the injections, which are meant to numb the area so the screws don't hurt.  Right?  I think so.  I'm also not clear on all the pieces parts that were involved.  We have the frame, and we have the box-like thingy on top of the frame, and we have the alien attachment (or astronaut attachment, take your pick.)

These two pics are just sad.  I've just finished crying.  The face is totally taking away from my own cute pajamas they let me keep on.  Danny tells me that the pictures don't do it justice ... that being there, like he was allowed to do, looked much worse.  There were tears.  There was bleeding.  Poor baby had to look away at some point.

Once it was all set up and in place, there was no more pain, and I was OK!  The whole get-up was heavy!  It actually reminded me of big football helmets on little kids.  Of course those aren't attached to the skull, but it's probably a similar heaviness.  Maybe.  And it was weird because if they worked on one area, such as one of the screws or as they attached the different helmets(?) to the frame, I felt it deep inside, like down to my teeth.  Can't say I've ever felt anything like it before.  Nor do I wish to feel it again.

At the MRI machine, they guided my head back into this cavity where my head, in its wire frame, sorta snapped into place.  There was no moving my head, even if I tried.  Which was the whole idea in the first place-- Precise radiotherapy to blast away my small, 4-5mm brain metastasis in the right frontal lobe.

After the MRI / Gamma Knife was completed, they sat me up and I asked my radiation oncologist if all went as expected.  She said yes, but added that the lesion seen on my first MRI (6 weeks earlier) had grown to 1cm in size, AND there were 2 MORE smaller lesions seen.  They "got them all."

Here are a couple of pics post Gamma Knife, but before the frame was removed.  No pain at that point, so you see some little smiles, but we were quite discouraged with the findings of growth and new lesions.


I'm two days post Gamma Knife, and I have just a little soreness that feels like a bruise (well, 4 of them.)  Now just anxiously awaiting my scans next week.

This week I received some special gifts!  The first was from a friend who vacationed in NOLA and thought enough of me to bring my favorite king cake from my favorite bakery.  The second was a beautiful bouquet of flowers from a good buddy whom I've known since nursing school (we met when I asked if I could borrow her notes from the following day because I was getting married!)  Thanks, ladies!



Oh, and since I'm including lotsa photos in this post, here's another one that makes me happy.  My baby boy, on his 14th birthday!

Friday, August 12, 2016

Cancer, you suck!!!

I am now in what feels like the longest three weeks of my life. Well, maybe not really, but it's darn long!  I decided last week to discontinue my chemotherapy until after I get my scans on August 23rd.  I can no longer stand taking Taxotere.  In the healthcare profession, when a patient doesn't want to take a particular medication or treatment, they say she is "refusing" it.  When she takes it upon herself to not do what a physician recommends, she is considered "noncompliant."  Not sure where this falls along that spectrum.  Perhaps it's different with cancer patients and the decisions that sometimes have to be made.  Never having worked in the cancer specialty and only been a patient (albeit a very experienced patient!), I don't know.  All I do know is I'm done with Taxotere, for good.  The best way I can think to describe it is this:  I'm getting off of Taxotere because either it's no longer working and the scans will show progression, OR I'm getting off of Taxotere because it's too damn toxic!  See there?  Either way I'm getting off Taxotere.  Case closed.

Unfortunately, I am fairly certain that my scans will show some progression and I will have been switched to a different therapy after the scans anyway.  What started as "inklings" of changes that I could feel, is now, "yea, there's definitely something going on."  I can feel it in my bones (literally) in the form of pain and in the lungs in the form of breathing changes.  And some other stuff.  I know things.  I sometimes wish I didn't know my body so well.  It is really, REALLY hard to wait 3-4 weeks for scan results while feeling myself deteriorate.

Earlier this week, on Monday, I was so sick at my neurosurgeon appointment, that I had to reschedule my Gamma Knife procedure to next week.  It was a pretty miserable day, and I couldn't imagine going in to have Gamma Knife Radiosurgery while feeling like I did (nausea & vomiting all day.)  I did meet with the neurosurgeon, however, and he seemed competent and pleasant.  I admired his honesty in telling me about the worst part of the procedure:  the discomfort of the injection of the local anesthetic into the four places on the scalp where the wire frame will be screwed/secured into.  (My other doctors have totally downplayed it like it's really no big deal.)  Docs like to use the term "bee sting" to describe this sensation.  I've never had a bee sting, so I don't have that point of reference, but I have had local anesthetic before, and I recall it being unpleasant.  The idea of getting it four times into the head is unappealing, to say the least.  Hopefully I'll be adequately sedated which should "take the edge off" according to Dr. Neurosurgeon.  I also hope it helps me to not remember much of the procedure!

Soooo, next week, Gamma Knife (on Wednesday,) and the following week, scans on Tuesday then doc appointment for scan results on Thursday.  Nervous about it all, but ready to move on.

And believe it or not, I have intentionally left out many, many medical details because to be honest, I am tired of hearing myself talk about my own problems.  It's overwhelming to me, so I can imagine it might be to some of you, too.

Alrighty then, so, moving on.  Originally I thought this was not good, but right now it feels kinda sorta like a good thing that Summer is about over and the kids' schedules, and hence ours, are getting busy.  I have some events to look forward to and these motivate me to get out.  (But they also stress me out -- there is no pleasing me.)  Today we moved Christa into her dorm at U of H.  We live close enough to commute, but it's a tough commute for an inexperienced driver, plus she will be in the marching band which is very time-intensive, and lastly, she just plain wanted to live on campus (out of her parents' house!)  Here's a picture of us outside the U of H stadium.  Fun times ahead!
Tomorrow is David's first scrimmage as a freshman Mustang! High school football, people!  Can't believe my BABY will be in high school.  Looking forward to seeing him play, but honestly not so looking forward to going to tomorrow's event.  I'm expecting there to be quite a few moms there whom I know, and when you look like I look lately (like *#@!), you just don't want people to see you. No I'm serious.  It's embarrassing.  Shocking, even, for those who haven't seen me in awhile.  Planning to make little eye contact and keep to myself as much as possible.  Sad, isn't it?

Sighhhhhh ... Cancer, you suck!!!!

Tuesday, July 19, 2016

If I'm Going to Have Brain Mets, It May as Well Be Small

It's 10:30 p.m.  It may as well be the middle of the night, because normally at this time I am in bed and on my way to dreamville.  Tonight, however, I'm supposed to make myself "sleep deprived" in preparation for my EEG which is scheduled for tomorrow morning at 11:00.  Why I have to be sleep-deprived for an EEG, I don't know.  My plan was to go to bed around 9-ish and sleep til around 12-ish, then get up and stay up until my test, an electroencephalogram.  I really don't know what (in the world) made me think I could actually FALL asleep at 9-ish, as my usual routine is to GO to bed at 10-ish and then read, play Words with Friends, and catch up on Facebook until I'm good and sleepy.  It appears that the simple fact that I NEEDED to fall asleep has made sleepiness all the more elusive!  I thought that this overnight period of sleep deprivation would be a good time to update this blog.  It is, but just thinking about what I'm going to blog kept me awake in bed.  That, and remodeling plans for every area of our home.  Oh and fantasizing about having Chip & Joanna Gaines come by to share with me their amazing "Fixer Upper" style ideas and expertise.  What is WRONG with you, Kim??  Too much HGTV-watching, for sure.  Seriously, though, should I ever win the lottery, I really do have it all worked out.  I'll open up the kitchen, totally re-do both the master and upstairs baths, perhaps add more gameroom upstairs, and add deck & patio to our outdoor space.  A girl can dream, can't she?

Ahh, OK, back to reality.  Tomorrow is my neurology consult at MD Anderson's main campus downtown.  I'll have an EEG and then I'll see the neuro-oncologist.  These appointments were added to my schedule after I had a grand mal seizure on July 4th.  The last time I saw a neurologist, it was to evaluate severe chemotherapy-induced peripheral neuropathy.  I have that going on too, though not yet as severe as when I was last seen.

Last week, I saw my radiation oncologist.  I hate that I actually HAVE one of those.  Now that I've had time to really process my conversation with her, I've concluded that my brain mets (again, hate) could really be SO much worse.  The doc was like "it's a very small spot ... we could just watch and wait and see."  Yea, no.  But she really has me convinced that it's not that bad.  For one, it's just one spot.  As opposed to "multiple" lesions, am I right?  Two, it's only 4-5 MILLIMETERS in diameter.  That's pretty darn small.  And three, she does not believe that said lesion is the cause of my seizure.  It's too small, there's no swelling of surrounding tissue, and its location on the frontal lobe does not lend itself to causing seizures (a temporal lobe lesion would be more likely to be the culprit.)  I have to admit that #3 is a doozy.  Alrighty then, what DID cause the seizure??  Perhaps it happened so that the lesion would be discovered and hence treated EARLY, before it had time to grow and multiply and cause other problems??  I know God could do this, but I would have preferred a nice note or kind message of some kind ... not a big scary seizure which carries with it the threat of happening again at any time and in any place.  Yea, lots of questions for my God when I meet Him in Heaven.  Lots.

I'm also scheduled for Gamma Knife Radiation (should that be capitalized?  I'm thinking yes, it's that serious) on August 10th.  I'll meet the neurosurgeon on the 8th, because he will be placing the wire "frame" that will be used to guide the Gamma Knife on the day of the procedure.  This is the frame that will be attached to my skull in 3 or 4 places.  You'd think I would know if it was 3 or 4 ... I guess the mind turns to jelly after you hear that screws will be attached to your skull!  Like Frankenstein.  But the radiation onc assured me that it's not as bad as it sounds.  I'm told there will be sedation, and for that, I can be thankful.  I was also thankful to find out that my Gamma Knife treatment will be a one-time thing, not several days of treatment like my previous two experiences with radiation.  And, I'll be able to continue on my regular chemotherapy schedule, too.  Oh boy!  That's me, not missing a beat.

So ... as the dust is settling from the seizure a couple weeks ago, and my appointment schedule has filled even more, as if weekly chemo wasn't enough to do, I have continued on Taxotere.  Yes the side effects are greatly improved with the lower, weekly regimen (as compared to the higher, every-three-weeks regimen,) but I am still hating it.  Something about it elevates its status to the "worst chemo I've ever been on."  That's saying something!  Actually there is a cluster of drugs that are all near the top of my worst chemos ... all for totally different reasons ... but overall the Taxotere has SO MANY bad qualities and side effects that I'm calling it the worst of the worst.  Have I said how much I hate Taxotere??

Saturday, July 9, 2016

Complications and Sadness

If you've been reading here regularly, you know that Taxotere's been pretty rough on me in many ways.  What I haven't yet mentioned is that in the midst of my side effect woes, I also found out that my oncologist, Dr. C., was leaving MD Anderson.  So upsetting!  She has been with me for 4 years now and I must say, we have developed quite a bond (at least from my perspective.) She "gets" me.  And she knows how to handle me, too (Danny thought this particular statement was quite funny.)  It's the truth!  My last visit with her was on June 21st.  :(  For now I have been assigned to see another oncologist at MD Anderson's Woodlands location -- the same one I saw for a few months when Dr. C. was on maternity leave a couple of years ago.  It's unfortunate that I don't have the same confidence in this other doctor that I've had with Dr. C., but we shall see how it goes.

THIS week's news, however, has outweighed and in many ways compounded the news that my favorite doctor was leaving.  On the evening of Monday, July 4th, I had a seizure at my home.  I remember loading and starting the dishwasher, then sitting down on the sofa and reclining it.  Danny was on the telephone in his recliner which is adjacent to the sofa.  The next thing I remember is sitting on the toilet and Danny "cleaning me up."  I remember crying, and apologizing about the mess.  Paramedics were there to take me to the hospital via ambulance.  Danny told me about what had happened, but I wouldn't know the full story for a few days.  I was confused for a good while and repeated the same questions the rest of the night.  Even when I arrived at the hospital, I still didn't know what day it was.  It's disturbing to discover that something has happened to you and you don't remember any of it!  I do recall in the ambulance knowing that this could probably only mean one thing:  brain mets.  The cancer has spread to my brain, which caused a seizure.  This had yet to be confirmed, of course, but that's what was the most likely explanation.

At the hospital, I received IV fluids and they drew blood for labs. They also did a chest x-ray and a CT scan of the brain. Surprisingly, the CT scan was negative.  Normal!  What??  I know I was supposed to be happy with this news, but it threw me for a loop because I just assumed it was brain mets causing a major seizure as its first sign.

My magnesium was low at 1.5, so I received a mag infusion while there.  My mag's been way lower than that, down sometimes to 1.2. I've had chronically low magnesium levels for many months now as a side effect of the chemotherapy drugs.  I've received many magnesium infusions and I also take a supplement by mouth at home twice daily.  I suppose the potential is there for a low magnesium or any electrolyte imbalance to cause one to have a seizure.  At this point, based on the objective medical evidence, it is the only known potential cause.  Of course, some people have seizure disorders with no known etiology.  Hm. Very distressing!

Thankfully, when "it" happened, I was in the very cush, safe location of my recliner sofa.  And, my husband was nearby, witnessed the whole thing and was available to help immediately.  I can only imagine how badly I could have injured myself if I had fallen anywhere else in the house on the tile floor, or if I had been driving somewhere!  Danny says that my whole body stiffened up and flexed repeatedly, my head jerked back and my eyes rolled into the back of my head.  This lasted for 4-5 minutes.  It had to be quite a sight!  He said he laid me down on my side and kept calling my name.  At some point when it seemed to him that it wasn't stopping, he called 9-1-1.

My son, David, heard the commotion from upstairs and saw the goings-on from the balcony just above the sofa where I was.  He was crying hysterically, according to Danny.  My poor babies. Heartbreaking that he had to see his Momma like that. Bethany was out with friends for the 4th, and Danny notified her at some point that we were heading to or at the hospital.  Her sweet friends accompanied her there, then later back to the house to keep her & David company.  My brother- and sister-in-law visited us in the ER. Danny spent a lot of time at the hospital talking and texting family about the evening's events.  It is amazing the support I have from so many!  He even packed me a bag for the hospital (he says while the ambulance sat in our cul-de-sac for a long while with me and the paramedic in it.)  And the bag was REALLY well packed!  I wasn't admitted to the hospital, though.  I just stayed in the ER for a few hours and then was sent home.

The next day, I messaged my MD Anderson care team and scheduled an appointment.  They recommended that I have an MRI, which I did.  The MRI showed a small lesion in the frontal lobe which the radiologist described as having no surrounding edema and not resembling a metastatic lesion.  But he had to "presume" it was metastasis based on my history.  Hmmm, interesting.  I really didn't know what to think at this point!!!

My oncologist went with the brain mets presumption and immediately suggested that I change treatment course, calling it "progression."  Danny and I weren't so sure.  It has been over 2 years since I've had any sort of brain imaging, and at that time I had no lesions in the brain, only on the skull.  Our thoughts were as follows:  the past year and a half has seen my cancer at its absolute worse.  Perhaps it did progress into the brain, at that time, but it's also possible that whatever was in the brain has greatly improved like my lungs, liver, and bones have since then.  This little spot (4-5mm, with no accompanying edema) could very well be just a remnant of something much worse ... in which case it would not be cause to give up on Taxotere, but stick with it.  Because my latest scans of the chest, abdomen and pelvis, in addition to my tumor markers, are much improved and actually pretty good.  My biggest problems right now are the SIDE EFFECTS from the chemo!  (well and now that pesky seizure I had last Monday.)

So it's complicated!  The oncologist is also recommending gamma knife radiation to the lesion.  This is supposed to be a lot more specific to the target area, as opposed to whole-brain radiation. Also supposedly easier on the side effects, which sounds good to me because I'm SO not interested in any further deterioration in my memory or cognitive abilities.  I've had radiation before, so I'm not afraid ... change that to I wasn't afraid until I went and Googled the gamma knife.  Before one undergoes gamma knife radiation, a neurosurgeon places a wire frame around your head and screws it into your skull. Agggghhhhhhh!  Wait a minute, can't I just promise to be a good girl and hold real, real still??!  Aye, aye, aye, not sure how much more of this I can take, y'all!

Currently, the plan is to remain on Taxotere for now.  I am consulting with a radiation oncologist next week to discuss gamma knife radiation, because the fact is, I do have a lesion, albeit a small one, in my brain that wasn't there 2 years ago.  So let's just zap that baby and have it be all gone, right?  Right.

Prayers are much appreciated, my peeps!