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!