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.



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!

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!

Tuesday, April 26, 2016

Today sucks

I should never wait this long to post when there's so much happening.  I always think I'll remember how everything went down enough to produce a coherent and chronological account, but with my permanent chemobrain in full swing, THAT will never happen!

Let's just start with today, shall we?  Today sucks.  Any food that's not sweet, I can't taste.  It doesn't taste bad or unpleasant, it just has no taste at all.  Specifically, I can't taste salt.  This seems to have come on in the last few days or so.  I haven't gone my usual way of overanalysing everything so I can't yet comment on my ability to perceive bitter and sour, but the inability to discern saltiness is disconcerting to say the least.  The implications of this particular side effect of Taxotere are devastating to me.  I love to eat.  You might say I'm obese in spirit.  What's the point of eating when you can't taste anything?!  I also love to cook.  What's the point of cooking and exploring new recipes like I like to do if I can't taste anything?  Enjoyable events in my life and my family's life are celebrated around and with food.  I'm being robbed of one of life's basic pleasures!

This is familiar territory for me.  Two of my previous chemotherapies were drugs similar to Taxotere.  One of those caused altered taste sensation in the same manner (inability to taste saltiness.)  It sucked then, too!  I can't stop my thoughts from going to the long term here.  If this drug WORKS on the cancer, then I will stay on it for as long as it does.  Not being able to taste salt is not a valid or even remotely life-threatening reason to want to stop taking it!  I mean, sure, I've lots of side effects that I dislike.  But this one ranks pretty high when you consider it a quality of life issue.  I know, I know.  I know what you're thinking.  I sound so pathetic!  REALLY, Kim?  Yes, I'm having a pity party.  I want to taste my foooooooooooood!

And the icing on today's cake?  I have not one but TWO kids home sick today with stomach issues:  vomiting and diarrhea.

Uggh, NOT a good day.  Sorry y'all.  Obviously I can't even get past today's woes to discuss the past few weeks on this new treatment.  I won't return here til I'm in a better frame of mind, promise.  Prayers for that, please.

Monday, March 14, 2016

Time for a Change

It's been a week since I received my latest scan results from Dr. C.  Haven't really felt like writing ... trying to let it all sink in and get my mind in proper "strong" mode in preparation for a (another) treatment change.  I'm usually able to do this rather quickly, but then as time goes by, I work out the various side effect scenarios and get myself all nervous.

In a couple of weeks, I'll be starting on the chemotherapy Taxotere.  Carboplatin and Gemcitabine have run their course and do not appear to be working as well as previously:  The CT scan showed fairly significant tumor growth and new tumors in my liver.  The lungs are mostly stable, as are the bones.  Also, my CA 15-3 tumor marker is elevated again.  It's been trending upward for a little while now.

What I expected was that the scan would show "slight" progression, but not significant enough to warrant a treatment change.  This seems to be the way my cancer operates.  Progressive, slow growth for a few scans, then at some point a determination that the slow and steady growth is clearly too much.  My liver metastases have never really been a concern.  My lung (the pleura=lining) and the pleural effusion (fluid in the lung) have always been the squeaky wheel.  As I mentioned in my previous post, I'm having no respiratory/lung symptoms/issues.  So I was surprised when Dr. Coscio showed us and described the CT results.  She handed me a copy of the report, which described in painful detail the cancer progression seen in my liver.  My liver!  Dimensions of several metastatic lesions were notated, and those were compared to their previous dimensions.

I was even more surprised when she outlined the options.  Number one:  Stay on Carbo/Gem and "wait and see" what the scans showed in 3 more months.  Number two:  move to a new drug -- not just new to me but a relatively newly approved drug-- which is given in combination with some type of hormone therapy.  Some of the hormonal options were drugs I've been on before and they either didn't work at all or stopped working at some time.  However, there is a possibility they could work or work again in combination with this new drug.  Option number three:  switch to a different chemotherapy drug-- Taxotere.  Taxotere is related to Abraxane, which I've been on before and actually had some success with.  I was on it for approximately 15 months so clearly it worked for a time or I wouldn't have lasted that long with it.  I also tolerated it pretty well, from what I recall.  It's really hard to keep track of all of the different treatments I've been on and their associated side effects!  Not to mention the effectiveness (or lack thereof) of each one.  It's not my job as a patient to manage all of this, but ... I do try.  I keep a running record in my iPhone notes of the names and dates of my cancer treatments.  Not each individual infusion, mind you, but what I'm on, when it was started and when it was discontinued.  More and more often, I am also adding notes of why they were stopped and what troubles I had with each.  Hard to believe I've been in cancer treatment of one form or another for 16 YEARS!  10 years as stage IV.

Option number one doesn't really sound good to me, and I don't think Dr. C approves either.  Although, if I would have wanted to stay on it another 3 months, she would have allowed it.  "Wait and see"?  I think not.  She explained that since there is growth in the liver metastases and slight growth in the lung pleura, it is only a matter of time before the lung starts producing fluid again (pleural effusion has been the bane of my cancer fight for the past year and a half.)  I get it:  We don't want to let the cancer get that kind of foothold again.  It was a miracle from God that I overcame the colossal fluid buildup, massive "tumor burden," and emaciating weight loss.  Let's switch now and hope for a fabulous response before the downward spiral to death starts again.

Option number two involves the latest and greatest drug for advanced breast cancer.  I could be excited about it, but I'm not because we'd have to add hormonal therapy to the mix.  Some of these didn't work at all.  Some worked for a long or little while, but at some point stopped working.  Along the course of "sampling" a vast array of different drugs to treat my cancer, we have already "revisited" hormone therapy (in other words, abandoned it because it didn't work, then went back to it at a later time) and it was unsuccessful.  So, I don't have much confidence in it as a whole.  As an aside, one of the hormonal drugs being considered is given as an intramuscular injection-- TWO OF THEM-- every 3-4 weeks.  I HATE injections!  The kicker, though, is that I've been on that particular drug (Faslodex) before, and not only was the delivery method painful and extremely stressful for me, but it didn't work on my cancer.  No motivation to continue on it then, and definitely no motivation to get back on it now.  I'm willing to tolerate a lot of side effects for a drug that's working, but, well, you get the idea here.  

Option number three ... Dr. C said that typically if one drug in the class is successful, others may be also.  Considering this and the above mentioned facts on my success with Abraxane, I chose #3, the Taxotere chemotherapy.  I will lose my hair again, but I'm okay with that.  Thin, sparse, and slow-growing though it's been, I've been enjoying my short 'do.  A single large bottle of shampoo is all I've purchased in the last year.  Just the other day, after getting the new chemo news, I had the following thoughts, in a span of about 3 seconds:  Hey, I'm running low on shampoo, finally ... Oh goodie, I think I'll buy a different kind/scent this time ... Wait ... I won't be needing more shampoo any time soon.  :(  So, sure, there's a little sadness about it, I'm not going to lie.

The other thing is-- and I've discussed this before-- that it's so OBVIOUS that you have cancer when you're bald.  There is no pretending that you're just a normal woman.  You are a cancer patient, and everyone knows it.  Additionally, once your hair is back, people think you're done with treatment and everything is looking up.  I'm going to AGAIN lose my hair, which will signal that things are not looking good, which in this case IS true.  However, having hair when you're a stage IV cancer patient doesn't mean that all is peachy. The Carbo/Gem combo I've been on for the past year has been very harsh on my body, even though it doesn't cause total alopecia.  I'm operating on extremely low blood counts (red and white cells,) platelets, magnesium levels.  It is amaing how the human body can adapt and get by fairly nicely on such out-of-whack insides (case in point:  how in the world did my heart continue to function when it was displaced to the right side of my chest?)  Even when my counts are "good," meaning at a level adequate to receive my next chemotherapy dose, they are still way, way below the "normal" range.  There is lots happening behind the scenes with me that are "invisible" to others.  My point is that just because a chemo drug causes hair loss, doesn't necessarily make it a "stronger" one than others.  The perception of outsiders is that losing your hair is the worst!  But it isn't.

In fact, Taxotere may be "tolerated" better than Carbo/Gem of the past year, as it doesn't always severely affect the blood counts.  The unknown is what is unnerving.  Only time will tell which side effects I'll have on this new drug.  I'll receive the infusion and wait and find out for myself.  Will I be tired?  Will I be nauseated?  Will my neuropathy worsen or improve?  Will I be plagued with persistent low blood counts and platelets?  Will my low magnesium level improve?  Will it cause diarrhea?  Who knows!  It will be an "adventure" of finding out just how I'll be affected and figuring out what will work to counteract the SE's.  Fun ... not.

On the plus side ... I won't have the "Carbo Glow" to deal with any longer.  This is the embarrassing reddish-purple face rash that I always get a couple days after my infusion.  And I won't have the extreme-tenderness-to-the-touch of my skin that follows the Carbo Glow.  And I won't have the sensitivity to sound and intolerance to anything remotely aggravating (such as my kids, family, and virtually anything that I deem an unsettling incident or situation.)  At least, I HOPE these things will go away!!  Hoping, praying that my time on Taxotere is low on side effects and high on effectiveness!!!