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!

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!