Merry Christmas (And did I mention no more chemo?)

The day of my last scheduled chemo turned out to be a really great day.  As I mentioned last time, I finally got excited as the time ticked down.  I had scheduled it a little later than my usual 9:30 so that I could hopefully attend a little bit of Jonathan's class Christmas party if I was feeling up to it.  Well, I DID feel up to it, and so I went and it felt so good to able to do something normal.  I still felt weak and shaky, and every movement is achy, and I feel just "uncomfortable in my own skin" since all of this started, but Jonathan was very happy that I was there, so that is what is is all about.

Since time was a little tight, I asked my sweet new friend and walking-distance neighbor, Susan, who also happens to have a son in Jonathan's class, if she could drive me to school, then my "companion" for the day could pick me up at school.  But before that, I was surprised the day before by a beautiful and inspiring bracelet from that same friend and another new friend from Whitefield.  In fact, I wanted to wear it to the last chemo, so it inspired my outfit on that day.  On the other side of the silver cross are beads in brown and various shades of aqua blue.  I love it.  But back to the neighbor....on the way to school she shared something with me that touched my heart, and obviously hers too because we both ended up in tears before getting the car parked.  She said she overheard our sons talking at her house the other day, and her son asked mine if he was excited about the Christmas party, aka the last day of school.  Susan heard Jonathan say yes, but that he was more excited that it was his mom's last day of chemo.  Tears.  We were both struck by what a big statement that was for my eight year old, and the fact that our 3rd grade boys were even having a "serious" conversation in the first place!! More proof that this cancer journey is about way more than "just me."

By the way, I am very nervous to keep saying "last chemo" because even though I don't really believe in "good luck" and "bad luck" I also know that I don't get to decide these things, and if I did believe in luck then I would certainly say I've had a run of the bad kind.  Anyway, when I say "last chemo" all I mean is "hopefully the last ever, but at the very least the last one in the foreseeable future."  :)

So, back in August or September my awesome friend Johanna offered to set up a meal schedule for us, along with rides to and from chemo and walking partners, etc.  She came up with the schedule of drivers, and by no action of my own, it turned out that my friend Glennda Baker LeBlanc was scheduled to drive me to the "last chemo."  Glennda and I met when our children attended Covenant Christian School and we were both involved with Development.  She is a fabulous real estate agent and since that time we have worked together a couple of times and I think just hit it off.  She has a big personality, and so back when the chemo schedule came out, I thought how perfect it was that Glennda was my final "companion."   I knew that visiting with her on the last day would be fun no matter what.  She never met a stranger and has so many fun stories to tell.  

Last Monday before the "last chemo" I had a visit from my oncology nurse friend, and one of the things we talked about was "life after chemo."  She warned about some feelings that can arise as a result of chemo ending, and I was so glad she brought it up because I WAS beginning to feel some stress about chemo being over.  I know that must sound crazy, but for me, the after chemo means, uh oh...what do I do now?  Did the chemo work?  Now I (of all people) have to decide what next steps to take...yikes...no pressure.  A weird series of emotions.....  I don't want to take away the feeling of euphoria that was starting to set in about the idea of getting my life back, but really, that is pretty well counter balanced with questions that have no good answers.  Anyway....back to the good stuff.  My nurse friend and I talked about ways to commemorate the "last chemo" and during our talk it just kind of hit me that the best I would feel for at least a week or so would be on Thursday, WHILE I was getting the chemo.  Remember, they give all the pre-meds that make me a little loopy but among good friends, who cares?  Sooooo, I invited my old small group from church and then a handful of other close friends who have really been there through this whole ghastly mess, prayer warriors, one and all, to stop by that Thursday if they were able.

As we prepared to leave the school, I realized I didn't bring the plastic wrap to cover my port after I applied the lidocaine (numbing) cream.  So, once again, sweet people just appear.....the school office assistant managed to find a zip lock bag and my friend Susan got an impromptu lesson in the numbing of the port and how it works.  Then Glennda whisked me off to Piedmont.  

I loved that Glennda dressed for a special day and I just hate that I didn't get a picture of her whole outfit.  In fact, we were perfectly color coordinated...couldn't have planned it much better, except I was "dressed up" wearing microsuede pants, not-too-old sweater,  shoes that weren't completely flat along with a necklace (and my new bracelet, of course).  Glennda was wearing a chic brown dress with brown sequin cowboy boots, usual pretty bracelets and cool dangly ear rings that coordinated with everything.  We were off to a good start.  I had an small epiphany the day before and wanted to get a little something for the nurses, so what's a girl to do who feels tired and ugly?  Go through the drive through, of course.

After we got parked I realized that Glennda had a much bigger and better epiphany than me.  She pulled out her rolling cart, the size of those oversized red wagons for kids, and she literally filled it with stuff.  She brought other treats for the staff and us, and she also brought along lunch for us and whoever else might show up that day, all from one of my favorites, McEntyre's Bakery.  Thumb print cookies, cupcakes, more cookies, mini croissant sandwiches....I don't even know what else.  I remember her saying that no one was going to go hungry on her watch!  Combine that with my usual large bag of "chemo things" and her "go bag" aka "baby llama" per her son, and we were quite the spectacle upon arrival.  I spent the last several months trying to blend into the background and go unnoticed, and suddenly people were looking, but I didn't mind because I was on my way up to the "last chemo."  

I didn't pay too much attention to the the first part of my appointment, other than the fact that the scale tipped upward again.  Yikes.  Between the holidays, not getting up and out and moving, and the steroids, the scale has not been my friend.  All I really remember is that my blood was good enough to proceed, and I shared that all of the other symptoms persisted with no real changes other than the neuropathy and body aches seem to be getting progressively worse.  They said that is all normal.  Boo.  

When we arrived on the Infusion Room floor, Johanna was already waiting there, with balloons!  So happy to see her.  My top three favorite chairs were all taken, but I refused to let it shake me too much.  We found a corner I have never been in, but for that day, I think it was just the right spot.  Several other friends arrived and I was overwhelmed.  But I wasn't overly emotional, which sort of surprised me.  I think it must have been the "busy-ness" of the day, too.  There was lots of talking, eating, laughing, and of course the machine beeps often and the nurses have to switch one thing for another, so all of that kept the time passing and kept me occupied and unable to dwell on the emotional side of the day.  

Yay Johanna!  Thoughtful friend, organizer extraordinaire and wonderful human.

Yay Glennda!  Generous, thoughtful, mighty and fun!

Best Husband Award - Christopher Kern! Loyal, generous, smart, my biggest cheerleader.   

Yay Jennifer!  So faithful, little but livin' large, full of hope and life.

Partial Group shot!  I told y'all I am loopy and I forgot to get a "special photo" with Dawn before she had to go.  Boo me.  

So, toward the end of the infusion time everyone had had to go back to their lives, except Glennda and me.  The next thing I knew, the nurse was unhooking the needle-thing from my port and she said we were done.  And THAT was when I felt the tears coming.  I just sat there a minute.  And really, I should probably talk with Glennda again because I don't remember things well that happen during chemo, especially from mid point onward.  I don't think I bawled or anything, but I know I felt like I wanted to.  I was just pulling myself together a little when more surprise visitors came!  A whole sweet little family, from our small group!  I was so touched that they made time in their day to come by!  With a one year old!!!  I wish I remember what I said or what they said, but I don't.  :(  I just know I was so happy to see them and looking back, it was perfect timing, because it completely took my mind away from where it was going.  

Upon arrival at home, my parents had picked up Caroline from school (she only had a half day) and she had busied herself making posters, hanging streamers and blowing up more balloons.  Johanna had delivered yet more pink balloons!  Things looked super festive for me and I loved it.  Glennda even insisted that I keep the big blue buggy that she had hauled all of our stuff around in all day.  I was beyond arguing, and just accepted the gift, knowing that she gave selflessly something that was very useful to her.  Look out fellow soccer moms - that cool blue buggy will be making many appearances this Spring hauling all of our stuff around!  Even though I felt "out-of-it" I knew this was a special day and I am so very grateful for friends who treat me like family, who go out of their way to show they care and who think beyond themselves.  More tears.

My sweet Caroline's handiwork

One of several beautiful posters!  I immediately noticed the "no more cancer" and wanted to talk with her about how we're not sure, etc., but at least had the decent sense to wait until a better time to talk about that topic.

Another fabulous poster!!

Stunning all pink bouquet from Glennda!!

Table centerpiece made by Caroline from her scarf!  Great improvisation!

So, after the dust settled, my parents left, Jonathan was playing at the neighbor's house, I put on my PJs and Caroline and I settled down to watch a Hallmark Christmas movie.  I knew I would fall asleep soon, and I did.

I have felt about the same since chemo as I usually do.  Again, I believe the neuropathy is more painful in my hands...the numbness doesn't bother me too much.  I am getting more random shooting through my arms and legs, and I am so very sore just to move.  I still think the best description is the way I have felt after a big new workout....where it hurts to move every muscle.  On the up side...the hair on my head is really growing.  It is so soft!  The kids like to touch it.  It feels like a baby chick.  I can't wait to see how quickly it grows and when I can get it into some kind of a style.  And I made it through this whole chemo thing without a problem with my nails!  None turned black or brown or began separating from the nail bed.....they got dry and brittle, but none were ever in jeopardy.  The last of my old eye brows just came out, but I have a bunch of new, light colored ones growing in.  For these things, I am thankful.  

Tomorrow is Christmas Day, and it's a Thursday, the day I would usually get another infusion.  Chris and I are so excited to see how my body does now that it won't be knocked back down by the chemo. Here's to a Merry Christmas, Peace on Earth, Happy Holidays and Good Tidings to All!

Getting Excited!

Today is Tuesday morning.  Thursday is my last chemo, God willing.  That is all!!!!!!

One More Chemo!

It hardly feels real to even write that.  It is funny what we adjust to and how quickly a "new normal" can develop.  I only have a little time to write at the moment...I have a friend coming by to visit and maybe I feel up to walking, and maybe she'll help wrap a couple of Christmas presents.  Yay for friends!!

Confession:  I haven't been 100% completely honest on here lately, just because, how sad and boring would it be to read depressing things every time you check in.  I haven't lied, either!!  I would not do that.  But I may have been guilty of a more positive spin on more than one occasion, when what I was really feeling was slightly more "down," shall we say?   I don't think anyone can blame me, hopefully.  I have tried to give factual information about the actual happenings, and mainly factual information about my feelings, too.  I am not sure how to explain it, and perhaps the best way is to say that these drugs are a total beat down, physically and emotionally, and that builds and swells as time passes, and I really can't predict anymore from one day to the next how I am going to be feeling or what my mental state may be.  I wasn't really prepared for a new round of "mind games" (after the initial diagnosis, there was a lot of that....you might recall if you have been reading all along.  Otherwise, go back to July and see what I mean.)  But....with the end of chemo right here in sight.....I am feeling like a fish out of water.  So incredibly excited.  I know it might not look like joy coming through, but I am so very THANKFUL and truly excited, thrilled, happy, in disbelief.....shock...that we have come through 20 weeks of chemo. And the hard stuff.  Remember the beginning...the Red Devil?  The nausea?  Ahhhh.....even that feels far away.

This second chemo has been so different, and I finally "get" what the doctors meant about how it will build in your system and get worse over time.  At first it was more just the drippy nose, no nausea, a different set of digestive/stomach issues (that continue), but manageable.  But as these 12 weeks have passed, the neuropathy has gotten progressively worse.  I am very good at ignoring things, too, making me a "not-so-great" patient.  The numbness, then tingling, then outright aching in my hands has gotten a lot worse.  There are times that I shiver under 3 or 4 blankets just to try to warm up my hands and feet.  The shooting pains come without warning through my arms and legs, sometimes my head and back.  Over the last few weeks, nose bleeds are a regular occurrence.  And the tiredness.......that is probably what bothers me the most.  It brings me to tears to try to walk up the stairs sometimes, only to have to pause and catch my breath before making it up the whole flight.  I am not sure if tired is the right word for that.  Fatigue?  Exhaustion?  A feeling I have never felt before...for sure.  And it is combined with an ache in my muscles like a ran a 10K the day before (which I have never once done).  

Finally - my mind.  I could write non stop and still not get a true description out to you about how I am feeling inside.  Chris has been so amazing.  No matter whether I have been hopped up on steroids and have bitten the heads off of each and every family member (yes, it has happened...more than once) or whether I have melted into a large puddle of tears or just stared into space for too many minutes, or the thing that I know he dislikes but has tolerated so well.....me keeping the TV on til all hours of the night when I can't sleep from the meds or the mind games.  My emotions have been all over the board and everywhere in between.  Lately I have been less able to keep my "game face" on...which I am usually pretty good at.  I have tried to rationalize to myself that all of the above takes its toll over time, and the fact that I am unable to keep myself in check is ok.  But, it's weird.  I get so lonely, because I spend all this time alone.  Between not having the energy to do much of anything, and what I call "the hassle" of getting ready with the wig and all the makeup to look as normal as I can, I usually make the choice to stay in unless there is a compelling reason to leave.  And yet, the flip side of lonely is I often haven't wanted to see people, either.  I haven't felt up to talking, sharing, smiling....things you do when you see people.  It has been such a conflict.  I bet that doesn't make sense....feeling lonely yet not wanting to see people.

Anyway....I just wanted to give a small glimpse into "the mind of Rebekah" lately.  It is a strange place to be.  I am scared of the next steps.  That is part of it also.  But for today, and for this week, I am trying to focus on celebrating the moment.  It is healthy to celebrate the milestones and so that is what I need to think about instead of OPB (Operation Perky Boobs - because I am tired of saying the word mastectomy) or what the chances of recurrence are or what type of anti-cancer diet we are going to implement.  I wish I had the energy to have a ginormous party Thursday night.  But I bet I know how I will feel - exhausted as usual.  Still.... I refuse to let that take away my moment of being finished with this gigantic hurdle that was put out.  What a fabulous Christmas present for our family.  And I cannot wait to find out how quickly I "bounce back."  At this point I am assuming that for every day that passes after the first week (when I usually would have received the next round of chemo), I will feel a little better then a little better again.    Looking forward to finding out!

I Shaved!!!

I could have titled this post many different things.  "Long Time No Write"....."One More Week!"..."Two More To Go!"...."Almost There!"...."Finish Line In Sight!"....but I think the most exciting cancer-related thing for me that has already happened is that yesterday I shaved under my arms for the first time in months.  I know, that has never been a favorite...in fact, quite the opposite.  I'm the girl who really dislikes shaving and has tendencies to "push the envelope" in terms of skipping shaving days (I blame being half brought up in Europe).  BUT - it was pretty doggone exciting to realize that I had actual hairs growing under my arms again.  I debated keeping them just because I loved having them so much.  But, practicality (and old habits) (and just good American hygiene) prevailed.  The doctors have warned that when hair starts growing again there is a good chance that it will be different, maybe permanently, at least for the first year or so.  I don't care.  But in this case, they were right.  I didn't notice them for apparently several days to a week because they were so baby fine and light blond.  Again....don't care, just so happy to have them.

And perhaps even better news is that hair on my HEAD has started growing too!!!!!!  You might remember that I was told that with Taxol (the chemo I am taking now, aka Cocktail #2), usually one of two things happens.  Either your hair starts to grow back, or you lose what hair might have remained after Cocktail #1 (the harsher of the 2 in my opinion).  Well I have been waiting and nothing was happening then all of a sudden most of my eyebrows and many eyelashes came out, so I was scared that I was losing the rest.  (I only had a few stragglers left on my head...remember?....the Minion look?)  But then right before Thanksgiving I realized I have a bunch a new little eyebrows growing in, and some new eye lashes too.  It looks funny in profile to see stubby little lashes then full length lashes.  Not sure how to explain it medically, but either it was a delayed reaction to cocktail #1, or the "shock" of the new chemicals caused the final hair loss, but then my body adjusted and was able to overcome the toxicity and start a bit of normal function again.  The oncologist has talked about how the human body tries throughout chemo to "adjust" and get back to regular function while being hit with all the chemicals...sometimes succeeding, sometimes not.  I guess my "young" age has been a great help to me.  When I look around the Infusion Room and see all the grandparent types it is really hard.  I know many of them have so many other health issues they are dealing with, then to have to endure this on top of that seems almost impossible.  But I don't want to get into a deep emotional post.  I have had too much of that these last few weeks.

Sooooo, the new hair on my head appears to be dark in color, like my old color, so that seems good.  There is not really enough to assess texture or anything else, but let's just say that I am THRILLED to see a darkening of my scalp instead of a skin colored (aka scary, pasty white) bald head.  I was wondering whether it would all come back gray.  :)

Otherwise, we had family here for two weeks from Texas.  Well, my sis-in-law came in from NYC.  It was great to have family around, but I will admit I missed out on my usual afternoon naps and so ended up a bit more exhausted than usual.  But it was my fault.  I chose to push myself a bit and I was able to hang out with them most days, even if it was just lounging on the sofa while they put up a Christmas tree.  Now I am frantically trying to do my Christmas shopping online for the second year in a row.

As for how I am feeling.....no big changes.  White blood is up, red count is down.  Both small changes.  I am aching all over still, and the neuropathy is a little worse, but not a big deal (mainly numbness and I can't get my hands or feet to warm up).  The new drug for the hot flashes still works, but I wonder if it is the reason I had some rough days emotionally.  I think I might have adjusted to it since those feelings have subsided.  But I was feeling so "not normal" and was trying to think of what is different and all I could think was that new drug.  When you actually read the insert from the pharmacy with side effects, you see things like depression and suicidal thoughts (no, I was nowhere in those ballparks), but it reminds me that these are powerful drugs and they have the ability to "mess with you."  Good news....everything seems stable now.

Finally, tomorrow is the second to last treatment.  I am excited and yet a bit numb.  It feels like it just started, and yet like it has been going on so long.  Hard to reconcile.  I remember when I started this blog and added that ticker countdown, it had 130ish days on it.  Wow.  Thankful that time has passed, with the tremendous support of friends and family.  And some total strangers.  I have started planning a Thankful in Pink party for after I am recovered from the surgery.  Can't wait to have a house full of people who have driven, held my hand, cried with me, run errands, checked in, cooked for my family, prayed for us....all together.  I get weepy just thinking about it.  Hold onto your hats....we are moving on to the next phase together soon!

Happy Thanksgiving

Get ready for photo overload.  I finally took a few pics over the last few days with the new wigs, and I am ready to share!  But first, we are fortunate to have family come and spend time with us for this Thanksgiving holiday.  My mother and father-in-law flew in from TX on Saturday, and today my brother-in-law also arrives from TX and my sister-in-law from NY.  Luckily, my chemo this week has been pushed off until Friday so I have an extra day of feeling decent.  I will say, I am feeling pretty doggone tired, like exhausted, but that is to be expected.  I know I am a little more run down than I had been because over the last week or two I will start up the stairs at my usual pace (in real life I am a fast walker), then I need to pause half way up the flight of stairs.  That is just personally embarrassing for me.  I mean...it's a cotton-pickin' flight of stairs in my own house!  I am beginning to get a little nervous about how long it is going to take to "bounce back" after all of this is said and done.  I decided a few weeks ago that I wanted to put a goal out there of running another 5K. Seems like a manageable goal.  I was so proud when I ran my first one without stopping, and it didn't take all that much work (and I am not a natural runner.  Love the effects of running and the sense of accomplishment, but I am not one of those people who wake up in the morning and think that I need to go for a run so that my day can be complete.  I have had many wonderful, complete days without one bit of running, but I digress.....)

Anyway...I will be realistic, but I was *hoping* that with a Jan. 21 surgery, that after 8 weeks (possibly before) I can begin real exercise again, and then try to get a 5K in before school is out.  I am not a good summer exerciser, other than our normal (former normal, I guess I should say) active lifestyle....hiking on weekends, pool time, etc.  If I don't get it in before school is out, then I will kneed to wait until school is back probably....we'll see.  All of that is to say that at the blood check last week, my white blood count was back down quite a bit, which I attribute to the fact that the prior week my body was fighting off a cold or virus, causing the whet blood count to kick up.  My red blood count was up a little again, which was good.  I guess I just keep hoping that the red blood count improvement will give me some energy back but it is not happening.

Otherwise, the new Rx for the night hot flashes works like a charm.  Yay!!!  Thank goodness for sleeping through the night.  The only other changes are more dryness in my skin and as a result I have had a few nose bleeds.  Overall, manageable.  The chemo sessions are long....usually 4-5 hours, but this past Thursday I was happy to have my friend Dawn there who is an RN and worked Oncology for years.  She even knew some of the nurses there, so that was fun, and she answered a gazillion questions that I had (those questions that you wonder about but that don't seem important enough to ask the doctor, or that you know you already asked the doctor but you forgot the answer and are embarrassed to ask again).  I was thrilled that my friend Melissa who works close by dropped by and hubby came by too.  It was quite the party.  :)

Here is the Incognito.  We have come up with a couple of other names, too.  My father-in-law calls it the Cher, and when I put it on and looked in the mirror my first thought was Cleopatra.  It is really dark and really straight and the bangs are what make it so strange looking on my face, I think.  but it doesn't seem to tangle like my nice wig, so I have worn it a few time with a hat on it so it doesn't look so Cleopatra.

A few people have asked about my port, so I thought I would show what it looks like.  It has 3 raised bumps that guide the nurses where to puncture each time I go for a treatment.  This is to avoid getting an IV every time, so I am very happy to have it.  I have an Rx for lidocaine that I apply 30-60 minutes before my appointment so it doesn't really hurt when they "stab" me to get me hooked up.  

Here is a perspective shot.  I don't like that it can be seen in so many shirts, but with the long wigs it is mostly covered up. I will keep the port for a full year since they will use it to give me the Herceptin every three weeks even after the chemo is done.  

This is the Ariel, and I am really loving her.  I realized yesterday why....she reminds me of the 80s and the spiral perms that I loved so much.  But really, she is easier to maintain...at least so far.  You can't see if she is tangled up at the back of your neck so easily.  By the way - I am the WORST at selfies - yikes.  Side note - see how I have drawn in eyebrows and you can barely tell they are fake unless you look really closely.

Ariel with the purple cap - my new carpool look.  I wake up 5 minutes before needing to leave the house and voila - ready to go.  

OK - I guess you can tell I have a new favorite. I also like the color.  Or maybe I just never realized how much I wanted curls.  Not sure.  Here Ariel is clipped back (which I enjoy having the option of doing).  

Downside of Ariel - she can be a wild child.  By the way - I know that Ariel the mermaid has a different shade of hair (as my girl quickly pointed out), but regardless, I refuse to give up the name Ariel until someone comes up with something better! 

So there are some photos to bring you up to date!  Meanwhile, I truly hope you have a happy Thanksgiving.  Last year at this time I had family here and I was looking back at some pictures and the left side of my face was paralyzed and I looked angry in the few photos I had take of me.  So, the good news is I don't look angry this year.  Yay.  But really, I guess the point is, a lot can happen in a year.  I would have never guessed I would have been diagnosed with Ramsay Hunt Syndrome (the Shingles on my face combined with Bell's Palsy), let alone the cancer the following year.  I hold out hope that next year will bring change as well, and I pray that it is for the better, for good health, for friends and family to be protected, and for faith to carry us through!  HAPPY THANKSGIVING, FRIENDS!!

75% Of The Way!

This past Saturday, Nov. 15, marked 75% of the time undergoing chemo.  Pretty pumped!!  In fact, in terms of actual infusions, I am down to FIVE more!!  Really cannot wait.  Cannot wait to unclog my head.  Cannot wait to get my energy back.  Cannot wait for hair to start growing back.  Cannot wait for all other body functions to return to normal!!!!

I don't have much time for an update right now....I have a friend stopping by soon.  But the major points include.....no big change last Thursday.  I received a NEW Rx for the hot flashes and hallelujah, it seems to work.  NO side effects that I can tell.  I take it at night and it has a sleep aid effect, but with no hangover effect in the morning.  I am still getting a few hot surges during the day, but again, that is only momentarily miserable, not disrupting my sleep.

I met someone new at chemo on Thursday.  My friend Kati was with me, and she ran into someone she knows, introduced us, and we briefly shared stories.  Again, it's all about perspective.  This young lady (I think quite a bit younger than me) has a two year old, plus two older children, went through 10 months of chemo for lung cancer last year, now the cancer has spread to her brain and she is back getting chemo.   Sounds devastating.  She had two wigs she wanted to sell, since they hurt her head with the cancer in the brain and her equilibrium is off, among other things.  Anyway, I bought them sight unseen, mainly because I couldn't figure how to say no off the top of my head and I knew she was really wanting to get rid of them.  And....you all know my feelings about R2.  They have tempered and we are mostly friends, even though she drives me crazy some days.  But...I thought it might be "neat" to have another choice, so now I have them.  There was no struggling to name these gals.....Chris took one look at me in one of them and said I could go incognito with it.  He said I could run into 5 people in Publix in that wig and no one would recognize me.  I am not sure about all that, BUT it's funny how different I look.  Of course, I quickly named that one The Incognito.  I put the other on (the one I was more excited to see) and my first thought was "Ariel" (you know, the Little Mermaid).  I secretly really like it, though my family is not fully on board. It is also really different, but how I can imagine having my hair in an hair commercial.  It is long. a pretty reddish brown, with loose curls, and none of the bangs or bangs-like stuff from R2.  That hair around my face drives me bonkers.  I get that wigs have to "disguise" themselves with hair like that, but I wore this out to the soccer games yesterday and I was able to pull it sideways across my forehead (like I used to wear my real hair) and then because it was so big and full (with all those curls) I pulled it back in a clip like I would have done my real hair.  That part felt nice...just clipping it back.  Anyway - I will take a pic in them soon when I have my face "done" and you can see what you think.

Otherwise, white blood was up to about normal range, which I guess was good but I felt like it was higher because my body was fighting that cold last week.  Red blood count continues to lag....a tiny tick up was the only change.  Thursday through Saturday/Sunday remains my exhausted and achy times, with things beginning too improve on Mondays usually.  Oh, and I gained a pound.  Fantastic.  They keep telling me that most people gain weight on chemo (which was not my perception at all before any of this!!), and that those who don't are really, really sick.  Ugh.  I guess I can't complain, but seriously...talk about adding insult to injury.  I am hoping half of it is water weight that will "melt" away when all is said and done.   Of course it will also help when friends stop bringing me yummy food plus decadent desserts.  Again....no complaints here....but I will have to join "my new reality" after the "excuse" of chemo has expired.  :)

OK - gotta run!  Have a great week and stay WARM!!  It is COLD outside!!!

We Have A Surgery Date!

This week has been a little different.  Last Wednesday we picked up the medication, Effexor, they prescribed to combat the hot flashes that were keeping me awake at night.  From the beginning I did not seem to react well to it.  I woke up the next morning feeling queasy, and I felt more nauseated when I moved around or bent down, just like with the first chemo.  My eyes were twitching and my muscles were shaking.  The worst, though, was when I would try to sleep I had difficulty getting my brain to slow down.  It was really strange....reminded me of my reaction to a few prescription painkillers I have had, where the "noise" from my brain was so loud I thought I was going to go nuts. I have always said I hate taking medication, especially anything with a narcotic effect.  It does strange things to my mind.  The shaking reminded me of the shots they give at the dentist.  They always warn me that it has a bit of an epinephrin effect, and I really don't like that shaky feeling.  After the second dose we finally realized we could move the time I take it up earlier in the day and that did help a little with the sleep.  Not so many crazy, fast thoughts.  But, all the rest of the "effects" remained, so I basically stopped taking it on Sunday.  All the symptoms went away within a day.  And the sweats stayed away for a night, too, but they were back again last night.  I guess we will see what else they can come up with to fight the hot flashes.  In any event, I prefer the hot flashes/sleeplessness over all the stuff above.  Yuck.

Otherwise, my red blood count climbed up in the good direction again, and my white blood count stayed about the same overall, but with my Lymphocytes decreasing.  I am not sure how to explain that.  I am curious to see how everything looks this week.  I have been fighting a sore throat and a bit of an ear ache since shortly after the chemo last week, and I know my glands are really swollen on the left side of my throat (they hurt!), so I get the feeling my body is trying to fight something off.  Mouth sores are back again, but luckily I have the Magic Mouth Wash, which is helping (though it doesn't seem quite as miraculous as last time).  The only other thing I realized is that my eye brows and eye lashes are really, really thin now.  However, I am amazed at how "decent" it looks to make fake eye brows by drawing them in the way they taught us in our little chemo beauty class.  I notice the thinness immediately in the mirror first thing in the morning, but once I use the brow tool, I don't notice at all.  Yay - good news.

Finally, my breast surgery has been scheduled for January 21st.  When the nurse called me today with the date my first reaction was panic, yikes, this is really happening.  That lasted a split second, followed by, ok, well now we have a date so I can get this figured out and move on.  For those who know me well, you know I immediately went to my iCal to add it and get going on getting organized with childcare, etc.  That led to my 3rd reaction, which was total dismay, because I quickly saw that January 21 is Muffins with Mom at school.  A once a year event.  Boo.  I am so sad about this, but I don't have the heart to try to change the schedule because I know that nurse had to coordinate THREE different doctors' schedules to make this happen.  I will get over it.  Jonathan will get over it (haven't had the heart to tell him yet - that can wait).  I should have looked forward at the calendar to start with so that I could have maybe requested NOT to have it on that date, but I'm not nearly firing on all cylinders here.  Anyway - you might be thinking this isn't a big deal, and I guess in the big scheme of things it isn't, but really, they are only little once, and so the number of times a mom attends an event like this is about 6 times per child EVER, then you're done.  I will try to put my "thinking cap" on (in quotes because Chris and I joke about chemo brain all the time now since I regularly struggle to pull words out of my head that I know I know) and come up with an alternative to Muffins with Mom.  Enough about that!!

So, the surgery is scheduled at 8:00AM, with a 6:00AM arrival.  I prefer that over the later surgery times.  I think it is about a 4-5 hour surgery.  Seems long, but I know they have a lot to do.  Also, having the early surgery slot enhances my chances of only spending one night in the hospital, I bet.  I pray that I can have a calmness going into this surgery.  I am going to work on that.  I am not feeling very calm right now.  I was scared of the lumpectomy, and this is so much more that I am not quite sure how to get over being afraid.  But, I am praying about it and trusting that this is (unfortunately) a common surgery, and the doctors know what they are doing.  It will not be my first time with anesthesia, so that is reassuring.

I think those are the main updates.  I have a regular Thursday chemo this week.  Jonathan is performing this Thursday in the school Variety Show, and I really, really don't want to miss it.  I haven't ever tried to do anything on a Thursday before.  You have read how I feel.  On the day of chemo the main feeling is pure exhaustion, especially after it is over.  Part of it is the "relaxing" drugs they give me.  All I want to do is sleep.  BUT....we shall see if I can pull this off.  Having Chris to lean on will be key.....stay tuned!

Time Marches On

I missed my regular Monday update yesterday.  I guess it's because I haven't felt very good over the last few days.  Last Thursday went about the same, so that was pretty good.  Finally both the red and white blood counts took a move in the right direction, as the doctors predicted.  It was only a tiny, slight move, and they are both still below normal, but at least it was a move in the right direction.

Friday was Halloween, and we usually have friends over for dinner and fun before trick or treating, but I was nervous to commit to anything with it being the day after the chemo.  I know it might sound shallow, but I was pretty bummed (along with kids) about not being able to do the social events that we have loved so much in the past.  And it's not just Halloween...just add that to the list of things cancer has "robbed" from us.  Anyway, as it turns out I was feeling good enough to reprise my Princess Leia costume from last year (with Chris who agreed to wear his Darth Maul outfit again), which went perfectly with the kids' choices to do Star Wars for the second year running.  Caroline went from Queen Amidala to a female Storm Trooper and Jonathan went from General Grievous to an Arf Trooper.  It worked out nicely that I bought that Leia wig last year.  In photos you can't really tell, but I have ended up losing a bunch of eye lashes and brows.  I LOVE the magic brow pencil/tool, but am beginning to wonder if any eye lashes are going to remain by the time it's all said and done.  Time will tell.  Our neighbors in the cul-de-sac very kindly offered to bring their fire pit out and hang with us, so it was nice to be a little social without a lot of planning.  I was surprised that I was able to keep my energy going as long as I did, but by the time the second round of rain came along, not only was trick or treating o.v.e.r. but so was I.

Kern Family Star Wars 2.0

Action Shot!

For anyone in the Atlanta area, you know that the next morning was crazy cold, especially for November 1.  Of course the kids both had soccer games at the same time in different places, so I took the one close to home.  Even at 10:00 there was a wind chill of 29 degrees.  We survived that game and I planned to lay low and watch the TCU game later.  I am not sure if I overdid it on Halloween (sad as that sounds since I didn't really "do" anything) or if being out in the cold and wind affected me, but I felt pretty lousy that evening and all day Sunday and Monday.  I was congested, my throat hurt, I had what felt like a sinus headache and my whole body was aching.  Add in sporadic shooting pains and frequent hot flashes and that pretty much describes my days.  Ugh - not fun.

As I have mentioned, it is much more difficult for me to be positive when I am tired or in physical pain, so I have struggled over the last few days with keeping my mind in a good place.  I began to think about those "big" questions that don't have real answers and wonder too much about the what ifs and whys.  I let my emotions get the best of me over the last few days, but today I am in a better place.  Thank goodness.  I cannot think too much about the future, because with or without cancer, no one knows their future.  No one knows how long we have or how their "end" will come and cancer hasn't changed that.  It feels like it has but I guess it hasn't.  I keep thinking about graduations and weddings, but I need to focus on here and now, and so long as I do that, then I am fine.  So many people have advised "one day at a time" and "one foot in front of the other" and that is the best advise, I think.  At the very least, I know, when I pause a moment to be sane and smart, that stressing about the future or even wasting too much wondering about it, is just that....a waste of time and energy and unhealthy.  Not to mention.....it reflects a lack of faith.  So.....I have to reign myself in on a regular basis.

Anyway - this week is a little abnormal since I have chemo tomorrow (Wednesday) instead of Thursday.  This weekly chemo seems SO much faster than the other.  I really don't like having only one day maybe of feeling better.  And though the other chemo was more difficult (so far I still think this is true), it was nice to have that quite distinct feeling of "coming out of it."  That does not happen with this.  I feel a little better as the days pass but I never get back to a point where I would say I am "out of it."  The only other update is that tomorrow I plan to ask for the prescription for something to help with the hot flashes.  This last week beat me down too much, and I need to try to stay sane and mentally healthy.  I didn't want to have to deal with the side effects of the Rx for the hot flashes, or add yet another drug to the long list I am taking, but the need for restful sleep overrides!

I almost forgot - today was our appointment with Dr. Barber, my regular surgeon.  We shared with him our choice for plastic surgeon, and thanks to my friend who has been through this process recently, I learned about a nerve block and have now requested that we schedule an anesthesiologist who uses that technique.  The surgery will be mid January.  The doctor explained a lot more about his part of the mastectomy, particularly how my lymph nodes will be treated and why.  During the surgery they will remove a portion of my remaining lymph nodes on my right side, due to the fact that I had one positive sentinel node.  The expectation is that no additional cancer will be found.  Of course I have learned that the expectation is not necessarily what will happen, but it's good to know the odds.  We will not get those results immediately as we did with the lumpectomy.....it will take 3 or 4 days.  Worst case scenario would be to see active cancer there.  Possible scenario is to see that there had been cancer there but the chemo attacked it and killed it.  Best case is to see 100% healthy nodes.

With this surgery I will only spend one or two nights in the hospital, then will be sent home with drains for a few days and then best case scenario I can drive after a couple of weeks.  It sounds like they think I will need some physical therapy to get the full range of motion back in my right arm.  I probably will never get all of the feeling back in it.  In fact, it is still numb on the underside from the lumpectomy.  I didn't like hearing that due to the risk of lymphedema (swelling of the arm due to lack of proper movement of lymphatic fluid after the nodes are removed) they will give me a special "sleeve" to wear during "risky" behavior, like flying.  The sleeve squeezes your arm to promote proper flow of lymphatic fluid.  But, I guess that is a small price to pay.  There was a lot more information, but I think I hit the main points for anyone who is still reading this long post.  Anyway - I love that this doctor takes a lot of time with us and doesn't seem rushed and seems to welcome questions.

I am pooped after all of this.  I have a couple of pictures to add, too.  In an attempt to end on an up note, I will post one of the many quotes that are posted around our bedroom and my closet area.  I like seeing these every day, since I need constant reminding of what is important.

Deuteronomy 31:6 Be strong and courageous. Do not fear or be in dread of them, for it is the LORD your God who goes with you. He will not leave you or forsake you.

I meant to add this last week, but here is a picture of R2 inside out.  I never realized that maintenance of a wig would exceed maintenance of real hair, but it does.  Real hair doesn't knot up the way this does, and then it is a SLOW process to gently pick it apart then flat iron it to "repair" it.  I remain thankful for the wig option, but thought you might find this interesting!

Beautiful flowers - ending on a happy note!

Finished 8 of 16

Good morning.  I guess I am developing a "Monday" routine for writing these updates.  Thursday was uneventful (good!) as far as treatments go, except I fell asleep on my friend Anne Marie.  I feel pretty lame when I wake up and see my friend sitting there and realize they have been watching me sleep, but what can you do?  This is one of the reasons they say it's best to have a friend drive, I suppose.  I was a bit sleep deprived going into it also, as the "flashes" continued to wake me up, though they seemed to decrease on Tues./Wed.  I almost missed the fact that this was treatment number 8 out of 16 total.  Another milestone.

When my initial blood work came back before the chemo, the good news was my red blood count, and specifically hemoglobin (oxygen in blood), finally took a turn in the right direction.  It didn't move much, but at least it stopped dropping.  Unfortunately my white blood count (immune system) went down further, but apparently while it is below healthy range it still has room to go before getting overly concerned.

During our consult time I also asked some questions that came about as a result of our two appointments last week with plastic surgeons.  I like both doctors, but prefer one over the other, so I am glad that decision wasn't too difficult.  We had examined several on paper, based on experience, schooling, credentials, etc., then met with two.  The one whom I liked better on paper before the face to face remained the fave after meeting, based on his "portfolio," personality, office and answers to our questions.  Let me just say, for me, having zero knowledge and experience with plastic surgery, and being the type that has given this no thought at all....this whole experience is eye opening.  I am a modest person, and clearly the personnel in these offices are accustomed to the body being an open canvas, where nudity is no big deal and even taking photos of your body are "normal" and apparently not uncomfortable for some.  I was totally out of my comfort zone!!!  I will not get into details, but suffice it to say, while I appreciate the fact this type of option exists, the whole array of options  seems crazy and I really can barely believe I am going down this path.  If everything remains on the current schedule, my surgery will be sometime in mid January.

After all of the research and questions and talks with the doctors, we are about 92% sure we are going to go with the double mastectomy.  I was really waffling there for a bit, wanting to make sure that there were medical reasons behind the double versus single.  I can definitely see the argument for a single, particularly after I realized that you could still do less invasive surgery to "augment" your remaining breast to "match" your new one (even if you choose to keep the same size, they would have to tweak for symmetry).  However, given my age and remaining projected life span, aggressiveness of my type of cancer (grade 3, the most aggressive), and the intense "surveillance" that would be done on the remaining breast every 6 months (including the reasonable potential for false positives leading to additional biopsies, etc.) and the difficulty in "matching" the old and the new, we decided the double provides some peace of mind in these regards.  The healing time really does not increase, though of course my left arm will be affected whereas it wouldn't otherwise be a factor.  We meet with our regular surgeon on November 4th, and I bet we will get a surgery date set soon.

Otherwise, the only other "news" is that I finally have taken advantage of two classes offered at the Cancer Wellness Center.  The first was called Look Good Feel Better and the hair lady, Jennifer, had insisted that I attend.  This is a class offered across the country to breast cancer patients, and over 50,000 women attend every year.  When I went, it was just another woman and myself, so it was nice to be able to talk with her.  She was the first person I spoke with at length who was also going through chemotherapy and she was wearing her wig, etc. and it felt very comforting just to meet her.  I cannot remember her name, and I had completely discounted the idea of therapy and/or meeting a stranger going through this, but now I am realizing there is value in that.  Even if the encounter is for only a couple of hours, there was value in simply talking with another person who really is dealing with the same things you are dealing with.  As it turns out, the aesthetician who taught the class had gone through chemo in her 20s after she was diagnosed with lymphoma, so she was a wealth of knowledge.

The class was all about how to deal with the effects of the chemo and/or radiation as it relates to your beauty routine....skin, hair or lack thereof, makeup.  We were given a very generous bag of full size, name brand beauty products, so of course that was exciting.  I think I posted not too long ago about how my eye lashes and eye brows were hanging in there.  Well, as luck would have it, shortly thereafter I realized I have lost a lot.  My brows are very thin, which shows up a lot on me since mine are so dark.  The beauty bag included this great eye brow enhancer tool, and we were taught how to use it, and it makes an amazing difference.  The same with eye lashes.  If you apply mascara the traditional way, you risk pulling out eye lashes.  So she showed us a new way to do it that is gentler on the remaining lashes, and how to apply eyeliner to try to mimic eye lashes if they all end up coming out.  Again, it is easy to get down in the dumps about this because I really, really do NOT like to spend this long getting ready, but I am thankful there are products out there to help.  Moisturizer is another big one.  My face and body are so very dry, which is very strange for me since I rarely ever have dry skin, so I am not in a good routine of applying moisturizer.  All of these changes are manageable, it's just an adjustment.

The second class I attended was a Mindfulness class.  The thought on this (for me) is to learn to relax in any given moment and to create a routine of having good down time each day.  I am a pretty high strung person as most of you know.  I do not think there is anything wrong with that, except for the fact that I (used to) be running so "fast" that I would either miss moments that should be savored or overreact to situations that could have been handled in a slower, more calm manner.  I love being around calm people, and so I am trying to create more quiet moments for myself.  I realized in the first class that one barrier I have had is that I have not placed adequate value in taking time out for myself.  I realize that there is value in things like working out (healthy body=healthy mind, long life, etc.) but I really have never placed value in taking quiet time for myself (other than my Bible study).  This type of quiet is different from all of those.  It is meditating and cleansing in the sense you are (supposed to be) clearing your mind of all things except your body and your breath and by getting to this point of relaxation, your body releases endorphins, etc. which are healing.  I was not very good at it, but I plan to continue and try to learn how to "unwind" and really just sit for 10-15 minutes at a time without running through a to-do list in my mind, or replaying a conversation in my head, etc.  Up until cancer, if I found myself with 15 minutes of unscheduled time, I would feel the need to fill it.    In fact, I still do to some degree.  However, I am working to change that.  I am trying to teach myself that those 15 minutes are a gift, and it is ALL RIGHT to just sit out on the deck and enjoy the Fall colors and listen to the birds.  No guilt.  No waste.  This does NOT come naturally to me and I am nowhere near where I would like to be on this, but it was eye opening and I see the value in it.  The human body and mind DOES need a break, and we are (sort of) in charge.  At least we are in charge enough to offer ourselves the opportunity for calm and quiet.  :)

Just realized I might sound kind of preachy.  That is not the intent.  I am half trying to remind myself about these things.  I know I cannot change my personality, and I really don't want to...just looking to create a healthy habit, that is all.  For today, I have a friend coming over for a walk, and I think I actually feel up to walking a little bit.  Saturday was rough, felt chilled most of the day and super congested/achy/sinus pressure.  Yesterday was a little better.  As a family, we began to think about what we might want to do to celebrate the end of chemo.  We might do something, but with the surgery looming right after Christmas, I think I prefer to hold off and have a real celebration after I am healed from the surgery.  It was fun to brainstorm things to do for Spring Break or maybe we should hold out until summer.  We let our imaginations run wild, and it was fun.  And yes, there will be a party in there somewhere!  Rest assured!!

Monday, Sleepy Monday

Good morning friends.  Here is a quick update.  Today we meet with our first reconstructive plastic surgeon.  We have an appointment with a second such doctor on Wednesday.  We are meeting with our "regular" surgeon the first week of November, and he advised that we should have made good progress on selecting our plastic surgeon prior to the appointment with him.  I am looking forward to getting "educated" on this upcoming process, but I will admit I am scared of it and obviously dreading it.  In case I haven't mentioned it, the mastectomy (still assuming that is what we will have done) is performed by the breast surgeon (whom I already know from previous procedures) and the reconstruction part is done by the plastic surgeon, so two doctors are involved in this process.  It has been easy for me to be flip about this so far, saying things like "It'll be like the C section...all I have to do is show up!" but deep down that is not how I feel.  I was scared of the c section, too, but I knew I would get a baby out of that deal.  :)  And I knew it wasn't really optional with the way the baby was positioned.  This feels different and we are making some choices, and that brings so many questions.  Then, there are so many different options with breast surgery....who knew??  Different ways of doing it, different scars, different end results, and to me the biggest question is....do I really have to do this and is it the best choice for my overall health.  Feeling some stress from all of this for the first time.

In other news....this 3rd round has been harder.  I don't like the chemo coming around every week.  I keep telling myself that it is nice that we are ticking through the doses in double time, but I was also "enjoying" the almost week of "feel better" days in between.  Last Thursday went as well as the prior Thursday.  They also gave me a flu shot.  I was wiped out and slept from carpool onward, waking up to eat dinner sometime in there.  My white blood count and lymphocytes remain low, but the red blood count and hemoglobin is what is really, really low.  I was hoping those would have crept up, but we can hope for next time.  I am eating meat every day (more meat than I have eaten over the last few years!), resting, taking vitamins, etc. so we will see.  The only other thing that came back after my appointment that I want to ask about this Thursday is the ALT and AST numbers.  I looked this up and see that they can be indicators of liver damage, and I am sure this is a "normal" side effect, but I would like to understand why my numbers have jumped up so much and what does that mean.

All of the previous side effects have continued.  The only change has been increased sinus drainage and associated pain and the big one is the increase in hot flashes.  It seems that I am also having cold flashes too, but it might just be my body readjusting after the hot flashes.  But when it happens I get really cold (Chris says I am cold to the touch) and I feel like I need to wrap myself in a blanket to stave off true chills with teeth chattering.  In the day time these are annoying, but at night, these flashes are keeping me awake.  I plan to see what the dr says or if this goes away before Thursday.  However, I cannot handle not sleeping on top of the body tired feeling I have, so something needs to give on this.

Last thing.....I think a person's attitude about "heavy" things comes and goes, and it is easier to be positive at some times more than others.  I think it might be easy for our friends and family to think that Chris and I stay positive because that is what they see.  We try really hard to put on a brave face, not in an attempt to deceive anyone or be less than transparent, but because in general, it takes a lot of time to explain these deeper feelings and because no one likes to feel vulnerable or broken down.  Anyway, I guess maybe because I haven't felt quite as energetic this round, or maybe it's because of this new round of doctor's appointments, not sure, but Chris has fallen into one of what I call his "deep thinking" modes....quiet and preoccupied.  This, of course, affects me and so this weekend we spent time talking and pondering the future, pouring out our fears, trying to figure out how much we should let this cancer "control" our decisions, etc.  It is crazy not to factor cancer in, and yet, no one wants cancer to be the reason they do anything.  Again, my prognosis is pretty good, but there is always that BUT at the end of the sentence.  I absolutely hate that.  I hate that cancer exists and I hate that we are dealing with this and I hate that ANYONE has to deal with this.  My heart breaks to think of all the CHILDREN I have heard about with cancer.  And I hate to use the word HATE because I teach my children that is a very strong emotion and it is not to be used lightly, but I think in this case I am justified.  Sorry to be going on a tangent here, but this is what happens when I am tired and sleepy and thinking too much.  So I guess what I am saying is that I am not feeling very positive right now, and I don't need anything from anyone other than continued prayers and encouragement.

Chris made a comment this weekend that I hadn't thought much about, but I thought it was interesting.  He said every time we see people they make comments about how "good" I am looking.  I asked why that bothered him, and he said it doesn't so much bother him as much as he thinks people aren't seeing the "real deal."  Of course everyone is being super nice in giving any compliment at all, but I told him I didn't really want people to see the real deal, and that is why I put so much effort into getting ready to go anywhere and have someone come by the house.  The "real deal" is too depressing and I don't feel like sharing that.  He understood after that, but I guess because he is my husband and he sees everything, that conflict makes sense now.  In case you are wondering, the "real deal" is me ripping off the wig, my lovely friend R2, as soon as we walk in the door.  It is me getting my contacts out of my eyes as quickly as possible because the eye drainage makes my vision through contacts so blurry. It is me laying down more than sitting up.  It is no tinted moisturizer and no under eye concealer to attempt to cover the deep dark circles.  It is sweat pants and slippers.  I feel a little guilty about all of this, but we are on the same page in terms of why spend energy doing "extra" on days when I don't have to?

I think that is about all of the news, if that is what we want to call it.  There is a lot going on this week.  I attended my first class at the Cancer Wellness Center last week and I have my second tomorrow, so I will have to share something about those later.  Until then, stay strong, be kind and have a great week!

HALF WAY THROUGH!!!

Good morning friends!  I am sniffling and sneezing and wiping my eyes (not tears, just goo), but I am in a good mood because today marks HALF WAY through the total number of chemo days!!!  This, of course, assumes we stay on the current schedule.  And, it is not half way through the total number of treatments, since those have accelerated to every week.  But, I think counting the total number of DAYS of this process makes the most sense, so that is how I am declaring us HALF WAY through the chemotherapy regimen.  YAY!!  I remember when this point felt very, very far away, and getting here seemed treacherous and scary.  Yet, here we are....kicking and not too much worse for the wear, so that is encouraging for me to think about.  Bald maybe, but even that is not nearly as scary as I thought it would be.  It's all about perspective - I am reminded of that on a daily basis these days.

Plans for the day include a board game or two and then watching the TCU v Baylor game.  I love that that game is being played today because they are both my alma maters (TCU undergrad and Baylor for law school), so it's a win - win situation.  I know this is stretching it a "bit" and I am reading waaayy too much into a college football game, but I like to think that the win-win situation of today is a "sign" of more winning and positive things to come, since "my team" will win regardless of the outcome of the game today.  OK, I admit I have more loyalty to TCU, but I always pull for Baylor also, so it's not too much of a stretch.  All right - end of football analogy.

So, enjoy your day, and let's all be thankful for the gifts we have been given.  Half way through any challenge is cause for celebration.  Hugs to you!

So Far So Good

It is Friday morning after my 2nd round of Cocktail #2.  I am feeling a lot better than I would have at this same time with the first cocktail.  In fact, I was able to drag myself to the school to watch the I Love To Read Week parade, and several sweet little moments happened.  I had under-estimated the parking situation, so had to park far away and parallel.  I am not too shabby of a parallel parker, but under pressure with cars waiting, etc. I was thinking..."oh boy, here we go" but a dad had come forward and was directing the mom in front of me, then directed me and everyone behind me, stopped the other traffic trying to get through, etc. and just made it easy.  Then as I stepped out of the car, here comes an employee on a golf cart and offered me a ride up to the school.  I just thought....another little blessing, and that's what I told him on the drive.  He had no idea what my story was or how tired I was feeling, and he could have gone up to any of the other parents getting out, but that just worked out the way it was meant to, and I felt so happy to be there and reassured that all was ok.  The parade was so cute and the kids were just adorable all dressed up in outfits to go along with the books that their classes are reading.  And the best part.....walking up to the group and Jonathan seeing me and rushing over with a giant smile and a big hug.  Again...not really a big deal, but it was for this mom who feels like she has missed out on a lot of "moments" over the last few months.  So thankful that I didn't miss today.

My little Tom Sawyer!

3rd grade ready for the parade

Yesterday went better than last week.  This time my blood results before getting started were the lowest they have been.  I am not happy with this trend but I guess it is normal.  Without the Neulasta shot that I had been getting the day after the chemo, my white blood count took a really big hit.  And my red blood/hemoglobin numbers were down to their lowest point yet.  That really does help explain the fatigue.  The only other new thing I learned is that if my red blood numbers don't flatten out and/or begin to increase, and if I continue to have more fatigue, then we will have to look at a blood transfusion.  I didn't like the sound of that, but they seem to think it was no big deal.  Sounds like a big deal to me.  The PA said that some people with numbers as low as mine get them, but since I seem to be doing ok (and again, I have the luxury of resting a bunch throughout the day), then we will just wait and see.  

Otherwise, we talked about my big time congestion from last week (seemed to get better the last couple of days) with headache (like a sinus infection feel), little bit of neuropathy (coming and going), lots of fluid retention, new and different digestion issues, and my reaction to the Benadryl last time.  All of the first stuff was completely normal, and she gave me a little advice on things to change.  This time they gave me Ativan (relaxer) first, then slowed down the Benadryl drip and I was fine.  Thank goodness.  Also, they gave me the steroids again, and maybe I just missed it last week, but I wasn't expecting that.  Still, I am done with the oral steroids.  

My friend Karina and I passed the time catching up and just dealing with the different things going on there.  Chris often asks me what we talked about and I guess maybe I am more drugged than I realize, but I usually have a very hard time recalling much specific.  Most days I have many moments of frustration, embarrassment, fear or humor (depending on my mood) when I simply cannot recall the names of objects, a specific memory, a person's name, etc.  Again, I think this is normal but I really, really don't like it.  I hope and pray all of the cognitive ability I might have ever had comes back!!!

The only other related item is about a remote possibility of adding a new med to my cocktail.  The short version is basically:  Back when we consulted with Emory, a new medicine, Perjeta, was brought to our attention.  One trial had been released that did not completely match my current situation but it was close enough that the Emory doc said she would probably give it a try, but that insurance would probably present a problem.  Perjeta attacks the Her2 protein that feeds my particular kind of cancer (I believe I am saying this right).  That is the same thing that Herceptin is doing right now, but Perjeta attacks in a different way (so in my non-medical opinion it is another weapon to throw at the cancer).  Of course there are risks associated with the Perjeta, just like the Herceptin (heart failure/weakness...not to be taken too lightly).  Anyway, back when we returned from Yellowstone and the clock was ticking so quickly, we talked with our Piedmont doc about the new drug, but he wasn't willing to "go there" with the new drug since it was not approved for my situation specifically and because of the risks associated with it and the unknown factor given my situation.  We went with that.  Last week or the week before a new trial involving Perjeta was released and it is back in the news and we are second guessing the decision.  If we were going to take this drug it would need to be starting now or really, really soon in order to get in 8 weeks of doses before my chemo regimen ends.  The new trial still does not match my situation perfectly, and the closest speaks to the pre-op setting.  We are frustrated that we could have been given the Perjeta IF they had realized I was lymph node positive before my surgery.  But we have to deal in reality and trust that no one expected me to be lymph node positive based on valid tests and that for whatever reason things have happened the way they have.  

Chris went back to my Piedmont doctor last week and revisited the Perjeta issue.  Doc still says no based on the trials not fitting my exact circumstance, wanting to go with accepted and tested protocol and given the risks to me.  Chris asked him to please consult with MD Anderson about me (where my doc used to practice), and my doc agreed.  He just came back to us and said MD Anderson agrees with his decision.  This all sounds right I think, but Chris especially is struggling with accepting the idea of a new drug being out there that I cannot have.  He has asked for a new consultation with Emory, and as much as I dislike the idea of changing doctors and hospitals, we would do it if the Emory doc says yes.  We are just knocking at this door one more time, and we will trust and accept the final answer that comes....hopefully today.  We are trying to leave no stone unturned and to be our own best advocate.  I will admit that I personally have not been too stressed about this new "bump" or question.  But my dear husband has lost a lot of sleep over it, and I can see the look in his eyes and the stress on his face.  He is really focused on the long term and the life that we want to have together in old age, and I love him for that.  It is not easy to watch him try to mask relaxation, mainly because he is such a bad actor.  :)  I can see right through him.  Luckily, the kids can't, so that is good.  If you feel moved, please pray that the doctors take the time to think through this decision specific to me and what is in my best interest, and that we are doing the right thing, and for us to trust and accept the answers when they come.  Chris went over my "stats" as a refresher with my current doc, and that is always a sobering reminder of why we are going through all of this.  I tend to block these things, but the numbers discussed with my current plan are that I have a projected 85% survival rate at the 5 year mark.  The Perjeta would increase that to 87% or 88% I think.  I believe I also remember the idea of that statistic including EVERYONE, all ages, etc.  IF that is true then I'd like to believe that I am on the high side of those numbers, maybe higher??

So there is the update.  I am pooped and planning to stretch out and maybe try to read a book.  All of the fluid retention is bothering my vision, though, so maybe I'll just watch another episode of NCIS on my DVR.  I am glad to have discovered this show at the beginning of this cancer chapter.  There were so few programs that we regularly watch, and I tend to fixate on one show and watch all episodes, then find another show, etc.  And I really don't like most sit coms, anything gory or too scary or most reality TV, but I like a little tame drama.  Yes, you are probably thinking it so I'll go ahead and say it....I am sure my TV thinks I am 70 years old based on my viewing habits.  Soooo, it has been kind of perfect that I discovered a show that has been in production for a decade.  My DVR always has about 20 episodes waiting, making me a relatively happy camper.  From the girl who never turned on her TV in the middle of the day and might have been known to scoff at those who do, I have come a long way, mostly guilt free.  :)  Have a great weekend!

Schedule your screening tests friends!!  Do those self exams!  Don't procrastinate!