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Wednesday, September 21, 2016

Perks (updated)

So, did you know that while yes, I have lost most of the hair on my head, I also am not growing leg or underarm hair?

A gal's gotta find a bright side every now and then, and the ability for the first time since age 13 to not have to pick up a razor in the shower is reason to celebrate.

Let's see...I have time to do whatever I want for the first time in...well...ever!  I have either been a full time student with a job or a full-time mom with a full-time job my entire life.  I have had days off, but those are usually taken up with kids or vacations or chores or whatever.  These last few weeks have been decidedly lacking in tasks or things to do.  I have honestly felt pretty bored (I have no energy, lots of medication, and my brain is fuzzy, so still no work), but it has given me the time to be blissfully self-centered and trivial.  Kinda fun.

I have obviously been reading a lot.  I have finished the books that I had sitting around waiting to be read, and since I have read all of those (I ordered some more that should arrive soon), I am currently re-reading Harry Potter.  Naturally.  I am on book 4.  I find they are good for plane rides (I hate planes and yet find myself flying a lot these days in various states of health), though now that I am in the huge ones, that could be awkward.  I'll try to finished 4 and 5 before my next flight so I can get back down to a manageable book size for the trip.  I also read the sorta newest Harry Potter book, The Cursed Child, which was mostly disappointing, but I am sure is a fun play to see in person.  I do not choose to see it as canon and feel it was not great characterization in many instances, but I did enjoy the read.  I have to say, I have been meaning to re-read HP for a while now, so having the time to do so is super nice.  And to actually focus on it and not be reading in stolen time or in the middle of the night = total bliss!

I have also watched so much TV.  I completely finished Brooklyn 99, Happy Endings, am in the middle of Gossip Girl (I know - my TV taste is amazing), am catching old episodes of Top Chef, Project Runway, Say Yes to the Dress, etc.  Basically, anything light (I don't need hard drama or sadness in my life right now) and available on Netflix or Hulu is open to my gaze.  I have also binged some old Friends episodes, and naturally some Office, Parks and Rec, Buffy, and Angel.

And for the first time in ages, I have started on some current shows now that I can watch them immediately the next morning via Hulu.  I recommend both The Good Place with Kristen Bell and This is Us with Many Moore (despite it making me cry - it was happy/sad crying, so not too bad).  Granted, I have only seen one episode of both, but I liked them and it has been quite a while since I cared or had time for anything that is currently airing on TV.  Kinda nice.

I am thinking I might work on an article for publication for work.  I have been wanting to get something new published (I am currently the editor of a magazine, so my own writing has taken a back seat), so I think I may at least begin work on something of that nature.  We'll see.

I have also spent a ton of time writing thank you notes.  I have been getting a ton of really sweet cards from friends and family and members of churches, and my hands have been really shaky so it has taken me some time to be able to return them all a handwritten note.

I have made a list of small projects I think I will work on around the house as well.  Nothing big, as I still don't have a ton of energy, but little things like finally finishing cleaning up the spilled nail polish on the bathroom floor or organizing my dresser.  Things that need to get done, but have sat around for months and months since I am always too busy to get around to them.

I know it probably sounds silly and trivial, but I am really trying to focus on my day to day, and my day to day does not actually allow me to do much.  So, some TV shows, some books, some writing, and some little household projects.  Those are my perks right now and I am thankful to have them to help me get through these long days.

And oh my goodness, I just found these photos on my phone from back when Cheri and Mom were hanging out with me in Houston at Sharin's house for so long awaiting treatment news.  They were so wonderful, and I think I was so sad and in pain that I did not fully appreciate the specialness of being able to hang out with my mom and sister for so long a time.  It is really unprecedented and amazing and I am so thankful they are the wonderful people they are.

Naturally, the amazing house we stayed at had a pool that looked and felt like a beautiful oasis, so we took advantage of that at all opportunities.  I am glad I did since now I have a tube sticking out of my stomach and cannot even take a bath.  It was so relaxing and nice to have a little dip at the end of long days in hospital rooms.




I tried really hard to take happy pictures to send home to Brian and the kids.  
We also played a lot of Yahtzee.  If you know my mom, you know she always has a game, and this was an easy one to pick up each night and play for a little bit without much pressure.  This was after she got a Yahtzee and then the picture Cheri drew for me.  :)



We had several whole days to kill as we waited for news, so we went to 3 movies! That is more movies in one week than I saw in the theatres all of last year combined.  We saw Bad Moms, Star Trek, and Ghostbusters - all really fun and good for getting yucky things off your mind.  Plus, I got to take this photo with Cheri in the theatre, which is a win for life.

I finally moved back to the Memphis area, but my amazing sister no longer lives there.  I miss her so much, and I really cannot even explain how her giving up 10 days with her baby (right when they were moving apartments) to be with me while I was in a bad mood means to me.  She is the best.

And now that I have updated my perks with my amazing mom and sister, I find myself missing them a ton (and sad seeing these photos with my hair).  I am going to make a decided effort this weekend to get out and be social and create more perks in my life.  :)

Thursday, September 15, 2016

Chemo Sucks

And that is the understatement of the century.

I am going to try my hand at describing what it is like (for me) to undergo chemotherapy.  I will undoubtedly be unable to fully achieve this objective, but I really do want to try.  I simply had no idea, and I really wish I had.

Ok, so my cancer treatment plan is 3 rounds of induction chemotherapy, surgery to remove my tumor/rebuild my tongue and the floor of my mouth, and then radiation treatment to really cure that goose.

I am currently a little more than halfway through my 1st of 3 steps.  I am focusing only on this first step of chemo, as the others are equally terrifying and it is way too overwhelming to look beyond today right now.

My first chemo round was several weeks back when my mom and Cheri were with me for our first trip to MD Anderson in Houston.  We extended our stay by a day to get in the chemo treatment and the follow-up shot that occurs 24 hours after.

I was all prepared with my positive attitude (sorta), and while I really hate needles, I did ok with this IV (I am a hard stick they tell me and it is hard to find my veins).

This first time took over 10 hours.  That is not a typo.  They have to give me fluids between all the medicines and since it was the first one and they were being really aggressive, it took over 10 hours to inject me with all the different medicines necessary.  I slept for most of it since part of what they gave me was Benadryl, and my poor mom was a trooper with her iPad.  I had to pee like a million times and had to keep taking the IV pole down the hall with me to the bathroom.  It is hard to pee when you have an IV pumping into your arm.

Anyway, we survived, and went home really, really late that night to Sharin's house.  The next day, we went back and I got my follow-up shot 24 hours later.  Then, we headed home for real to Mississippi and Tennessee, respectively.

Now, I was told there would be side effects.  I was given both a booklet and individual packets for my different medications.  I spoke directly to a doctor and a pharmacist about them.  I was told I would be tired, nauseous, have muscle fatigue, get bad acne, lose my hair, have possible hand and feet tingling, etc.  Cool.  I was also told some people are energized by chemo if their tumors respond, and that there is really no predicting side effects for different people.

Now, let's recall that at this time, my tumor was huge in my mouth.  Like huge.  I was eating only pureed soup at this point for weeks and had been losing weight already.  My tumor was bleeding regularly (clots, so gross), and it was horrible.

I arrive home from MD Anderson after 2 weeks of being gone, and all I can think is "oh my God, I need my bed."  Not, let me hug my beautiful children and husband.  I need bed.  Now.

I fell into bed and did not move for I don't even know how long.  Chemo sneaks up on you and apparently tends to be the worst on days 3-5.  It is quite tricky how it leaves you alone for 2 days, isn't it?   Lulls you into a little belief that you are fine and then BAM!

I found myself in bed with no energy, no will to live, no will to sit up, no ability to move, and constant spit.

Yes, spit.  This, I was not warned about.

Since my tumor is in my mouth, when the chemo attacked it (yay - good thing!), it had to react and it reacted by creating thick mucus-y discharge that KEPT COMING out of my mouth.  Constantly.  It was so disgusting and if I swallowed it I felt nauseous, but I literally went through 2 boxes of kleenex spitting it out and I wiped my lips into oblivion.  Seriously.  I lost my bottom lip.  I am not joking,  It was over a week before it healed back properly.

But, that did not even matter because I had more serious issues at hand.  Everyone kept telling me to drink and eat and stay hydrated.  Cool.  I will just do that while I cannot move and am nauseous and keep creating spit and have no lip anymore.

Basically, I tried, I really did.  But, I am pretty sure I was severely dehydrated and constipated on top of it all.   Brian took me to the ER in Oxford and I got fluids, was diagnosed with a UTI, and they tried to help my reflux (caused by serious constipation) by giving me something to swallow (dumb) and I vomited blood all over the hospital bed.  It was fun.  I felt worse when I got home from the ER.

So, our doc at MD Anderson said to get my butt back to Texas and they would sort me out.  This sounds crazy in hindsight, but we were really scared and I was a total mess.  We were on a plane the next day.  I was wheeled through two airports in wheelchairs and given such amazing service by the crews at both locations, for the record.  I was feeling like crap, but I do remember the kindness of all the people who went out of their way to help me.

So, Brian was now with me and his wonderful cousin Kendall happens to live in Houston and picked us up and took us straight to the ER.

Where I was immediately admitted and stayed for over a week.

Sheesh.

Chemo.

Seriously.

Very long story short, I was dehydrated and could not eat because of my tumor going through its transformation thing.  They decided to place a peg tube in my stomach and that way, no matter what, I can get hydration and nutrition even if I cannot orally eat or drink.  I knew I was going to have to get one of these anyway later during the surgery part of this process, so I guess getting it early was not too horrible.  I kind of felt like a failure, though.  Like, I couldn't handle it.  I had to talk to the social worker in the hospital multiple times before I finally started to let myself off the hook a bit.  I want to handle this.  I want to be the one who stands up to cancer and fights it down and says suck it.  But, I was the one who was literally knocked to the ground and it was a hard pill to swallow for me.

But, I swallowed it, and once I stopped being so hard on myself, things slowly began to get a bit better.  I got un-dehydrated and that helped the chemo finally work is way through my system.  I got my tube and they taught us how to use it at home.  I slowly got back on my feet and eventually got out of the hospital and rescheduled my next treatment to get back on track.

The good news of all of this was that the chemo was indeed working.  My tumor is smaller (not hugely in surface area, but as far as bulging out of my tongue, that is pretty much gone).  I can eat again (which makes this tube superfluous most of the time), and the doctor redid the formula for my treatment to give me a different combination of medicines that would not have such a strong side effect on me.

I have full chemo every 3 weeks and I get a "booster" dose in between.  I had this booster before we left Houston again to head home.

Luckily, the booster side effects were mainly acne, a really bad taste in my mouth, and tiredness.  No dying this time.

I went back for full round 2 this past week and I am not going to lie - I was nervous.  It did not take 10 hours this time, more like 5 or 6, and Brian and I were on our way.   Even the shot 24 hours later was easier to handle this time.  I was feeling good.

We got back home to Mississippi, though, and all the sudden, I needed that bed again.  Bed.  It was all I could focus on the whole drive from the airport.  Again, no kids or hugs or love.  Bed.

And that is where I have been for the last 4 days.

Bed.

And this is what I believe chemo to be, for me:

Absolute, utter exhaustion of the mind, body, and soul.

The first 2 days were the worst.  I could eat and drink better this time since the spitting did not come back (thank God!!), and I had my tube, so we used that to make sure I was getting everything in and out properly.  No dehydration - yay!!

The muscle fatigue is no joke.  It would take me about 15 minutes to work up the energy to move my legs out from under the covers to even begin to sit up and contemplate walking to the bathroom.  Like, moving my arms to move the covers off of my legs and then in turn move my legs into a sitting position.  I would focus on this act for ages to get it done.

And then there was the crying.  Poor Brian.  I cannot say enough how he is a saint.  I could not handle anything that put me into sensory overload - noises, lights, smells, touch, etc.  He catered to my every whim, and I love him.  The random crying I think bothered him the most, though, and I don't blame him.  I cried about everything - why did I get cancer, I am so sorry for being crazy, the blanket hurts my leg, I don't have a desire to see the kids, I miss the kids, I hate this, my stomach hurts, etc.  All the time.  So embarrassing, and yet 100% out of my control.  Ugh.  Awful.

So here we are.  I am now past the worst of my 2nd round of chemo.  I am not 100%, but today I put on a dress and makeup and Brian took me to the Square for lunch.  I spent most of the afternoon in bed since that was a lot of energy, but my head is clear and I can walk and do things as needed now.  I have reconnected with the kids (I still need to work on some of that...), and I am alive to tell the tale.

I leave tomorrow for a quick trip to Houston for my booster (hopefully it will be easy once again), and then I still have one more round of chemo waiting for me on September 29th.  I am not going to lie - I am terrified to go through 3 days of crap like that again, but it was infinitely more bearable the second time, so I will stock up on more Hulu and Netflix movies and books and do what I can.  Hopefully, my tumor will continue to respond, at least a bit, and this 3rd round will indeed be the last and we can move on to the surgery part of this whole fun process.  :)

Sunday, September 4, 2016

Milestones

I left the house today.

That was a big deal for me.  I got dressed in actual blue jeans (I have not worn real clothes with actual waistbands in weeks) and put on a blouse and sweater, a hat, and went out to eat with Brian and Violet.  Jeremy is at a friend's house for a sleepover.

We went to a Mexican restaurant and were gone for less than an hour.

And I made it.

With only a little bit of social anxiety.  I am proud.

I ate my whole plate of food, too, which is also a big deal.  I currently have about half my tongue in working condition, and of that half, about 1/3 of the taste buds kinda sorta work, so it is interesting trying to taste food properly.  I have the feeding tube for the times when my medications and tumor leave me unable to eat, and I supplement with it daily, but I am supposed to still eat normally as well. Partially because apparently one can forget the muscle memory of how to eat (crazy) and also because it is supposed to make me feel more normal.

I have started putting the tube end up in my bra strap between my breasts.  I think it is less intrusive on my stomach there and it pulls up rather than down, which makes me feel more secure and less like the tube is pulling out (which I know it is not, but I mean, I have a tube sticking out of my stomach and it feels weird no matter what - I am trying to find what works for me).  I put on a black shirt and then a sweater on top to cover up the bulge.  For some reason, I think everyone can see it and is staring at my stomach.

I did not know what to do about my head.  We cut the hair off last night since it was coming out in handfuls, but I still actually have a ton of hair.  I did not shave it, but it is falling out all the time.  It just feels odd to me, and I of course am overthinking it to death.  I am not good at the scarf thing, and I am not so sure that is my look, but I do love baseball hats.  I have a tiny little head, so I had to search Jeremy's room and find his stash.  I have settled on the kids sized Boston Red Sox cap I bought him on my trip to Fenway years ago when he was like 2.  Funny that that is the hat that fits me.  He has other kids hats that are legitimately too large for my head,  I have lots of visors, but well, visors are not really the right kind of hat for this situation.

It felt good to have on jeans with a waistband and the tube up in the bra and the hat on the head.  I even wore my purse across my body and it did not irritate the tube placement.  Overall, I felt more human than I have in a while.

I am on methadone as my background pain medication.  I take it 3 times a day.  It makes me able to stand the tumor and the tube and the everything, but it is methadone.  Like, it is the drug they give you to help you come off of heroine.  I always feel just a little bit off center.  Like I turn my head and my vision is always a split second in catching up, you know?  It is unsettling when you go back into the real world where things move at a normal pace and reflexes are required.  I kind of felt like I was falling over a little bit the whole less than one hour in public.

We had a nice time.  No one actually stared at us, of course.  I probably looked 100% normal to everyone who bothered to glance at me, Violet was great, and our food was good (from what I could tell).

It is funny that this is my milestone.  Yesterday, my beautiful family came down to Oxford, hung out with me, we taught them to use the tube, and they gave me my "cancer cut".  Probably that was the bigger real milestone.  But for some reason, today felt bigger.  I had to do it on my own, and I made a step out, not a step in.  I think a lot of my issues have been with my own internal dialogue wanting more out of myself.  I am bound and determined to worry to death about step number 728 when I am still on step number 3.  Today, I actually focused on step number 3 and it was more than achievable.  These are the milestones I need to collect.

I need to get up each morning and put on the real clothes with the waistband.  I need to have a list of things to accomplish (today, the kids and I cleaned the kitchen floor, I worked on thank you notes, and I wrote this blog).  I need small purpose and tangible steps I can focus on and accomplish.  I need to stop worrying about what comes next and enjoy the fact that I actually can enjoy today.  Just a week ago, the idea of "enjoying" anything, or even having a clear enough mind to think straight at all, was too much to imagine.  Right now, I am sitting at my kitchen table typing with my beautiful daughter sitting next to me drawing my portrait with her markers and pad.  It is a dream.

I have a tube in my stomach, my hair is shedding horribly, I am a wee bit high, and I am fighting cancer.  But, more importantly, today I went out to eat with my family and it was not as scary as I thought.  It was a baby step of a milestone, but I did it, and I am proud.

I got this.

Monday, August 15, 2016

While Mommy's Away...

While I am here in Houston still anxiously awaiting specifics regarding my treatment plan, my beautiful children are back home in Oxford living it up with their Daddy.

Before I left, I was able to attend Meet the Teacher for both of their schools.  Violet is at Bramlett Elementary for kindergarten and Jeremy is at Della Davidson Elementary for 3rd grade.  I really wanted to be able to be at this day, since I knew I would miss their first actual days and weeks of school.  I was able to talk to their teachers and explain what is going on.  I think I threw the teachers for a loop with my little bombshell, but this was my only opportunity, so I had to take it.  I feel good about both schools and sets of teachers, and the kids seemed excited as well.




I can't help it - the Student Affairs and Housing professional in me has to note that the bulletin boards at Della Davidson were on point.  SO cute.






Here are my photos from my last day with my kids.  Violet came in and snuggled me, which she does every weekend, and then later I said goodbye to my monsters and was so proud that I did not cry.


Jeremy's first day of school was Monday, and Brian sent me this picture.  I cannot believe how big my little man is.  I feel like we were taking him to the UT Early Learning Center for preschool yesterday.  He is at that funny age where school starting is only mildly interesting.  He is excited to see friends and learn "cool science experiments", but he is also aware that homework, earlier bedtimes, and no phone privileges are also part of school days.  He is such a good kid, but this year I am hoping to see him grow in his penmanship, critical thinking skills, and verbal communication with adults (proper eye contact, less stammering, etc).

And my Violet started kindergarten a day later on Tuesday and was SO excited.  She has been playing school with her dolls and pretending to do homework for weeks.  My fears with her are that she is building it up in her head to be something that it probably is not - constant playtime with kids who will follow her orders, fun snacks, recess, and songs.  She will probably have a rude awakening regarding the strict schedule, lack of being the center of attention, doing what she is told, actually sitting still and learning things, you know, all the school parts of school.  My hopes are simply that she grows in her interpersonal skills, gains confidence in her academic abilities, and learns to follow the structure set out for her while also making some good friends.

So far, the reports from Daddy have been good.  Jeremy has been very enthusiastic about school and is enjoying the experiments with worms.  Violet comes home exhausted and takes a nap(!) to get out her grumpies before even attempting her homework.  This is a big transition for our little spoiled kiddo.  But, she will be good once she gets the hang of it.  And shoutout to Brian for his own transition to being a single parent trying to get the kids to and from 2 different schools each day with all their supplies.  Other than the 1st day lunchbox snafu, he is doing such an amazing job!!
The poor left behind lunchbox on the very first day of kindergarten.  Oops!
I have begged Brian to send me photos, so here are some of the pictures I have spent tons of time staring at as I miss these kids so freaking much.
They look so tired!  And I think Daddy gave up on even trying a headband in her hair after one day.  Oh well.


Who is this incredibly handsome young man?!  I saw this on my phone and my heart literally skipped a beat.  This kid. 

I had to give Violet a pep talk to get her through brushing her teeth one night.  It is so very traumatic that we make her actually use toothpaste!  So unfair!!



I have tried to Skype with them each night before bed (I have not always been able to due to pain), and hearing their little voices is so much fun.  I have no idea what they are talking about most of the time, but it is great to hear them and see their smiles regardless.

This past weekend, Joey, Megan, and Dani (who are also rotating to keep Penelope since Cheri is here with me) grabbed the kiddos and took them to Megan's parents' place to swim and play with the model train set.  They had a fantastic time and luckily were well-behaved and sweet to the Travis family.
These girls!!

How sweet are Joey and Megan?  And how exhausted must they have been at the end of this day?

Absolute heaven.


I simply don't know what I would do without so many amazing family members who were falling over themselves to step up and help when we were suddenly hit with the immediate need.  I hate all of this, but it has reminded me once again of how lucky I am to be a part of the best family in the world and married to the absolute best and most selfless partner and dad.

Tomorrow morning I have my follow-up appointments with my team of doctors, so I will have some treatment information to both process and share.

Wednesday, August 10, 2016

Patience is a Virtue

So, I put my pretty updates on Facebook for all to see, but I feel I can be real on my blog since only the tried and true actually read it.

Real talk: my Facebook update is totally true - we are making progress, my neck biopsies came back negative, and my team of doctors absolutely seem to be at the top of their game.  Awesome.  But, after my first meeting with Dr. Weber when I heard that I would not see him again or get a treatment plan until possibly Tuesday, Tuesday!!!, I literally started cussing and crying in the office the second he walked out the door.  What the hell?  Does he think I came to Houston to see the sights?  To take in an Astros game and see a movie?  I freaking don't get paid anymore starting Friday.  Meaning, I am literally living off the kindness of others to pay my rent, feed my kids, and keep my electricity on.  That makes me sick.  SICK.  I have always provided for my family, and this is so upsetting to me.  And sitting around Houston, TX doing nothing while the state of Mississippi garnishes my pay is not amusing to me in any way, shape, or form.  The social worker came in and told me that she could sign me up for the Christmas program where I will get $75 for each person in my household to buy them gifts.  I cried so much, I could barely sign the stupid form.  And I was not crying from the generosity of others who would donate that to us (which really is so kind), I was crying because how ridiculous and awful that I won't be able to provide Christmas gifts for my children?  I have a master's degree.  I have worked really hard to be successful in a field that I love.  I got a big promotion.  And I am basically having to flush it all down the toilet and have some stranger hand me money.  I know it is silly, but I really, really hate it.  I will get over it, but I am not yet.  It hurts me in so many ways.

And this stupid tumor is in my mouth.  In my mouth.  There is not a single second of the day that I do not feel it.  I only eat liquids now. I get soups from a store, put them in a blender, then put them though a sieve so I can ensure there will not be any chunks (actually - Cheri does this for me, and I love her so much for it).  It is depressing.  It hurts to swallow and I wake up in the mornings with blood on my pillow and dried to my face and neck.  Too much?  The tumor is getting so large, I cannot help but sometimes hit it with my teeth, and it starts bleeding - a lot.  Today, while walking through the cancer center, I had to stop and sit down and pulled a huge blood clot out of my mouth, spit up a bunch of blood, and then kept walking.  My life is a horror movie.  The extremely strong medicine I take for pain causes horrible bowel issues, and I am also dealing with those super exciting side effects, just for a little cherry on my sundae.

I know that I am in the best place. I know I am SO lucky to have so many people on my side, but this is my truth - 80% of the time, I am rational and thankful and level-headed about this.  The other 20% of the time, I am crying, spitting up blood, and feeling like I am tumbling down a black hole.  I am told that these feelings are normal and get better, but I just get overwhelmed sometimes.  I want to be strong and live up to the wonderful things people are saying about me, but ultimately I know I am just an normal person with normal insecurities placing her life in the hands of others.  I randomly burst into tears when they finished my 2nd neck biopsy today.  Not because it hurt or I was worried about it - it just hit me in that moment that I am a cancer patient sitting in a hospital gown with my paper bracelet and no control over what is going on around me.  I love my life: I have the best husband, the best monster children ever, and I am so lucky to have a fantastic job.  I want to keep living that life.  I have done nothing to cause this to happen to me, and I am a bit bitter that it has happened to me - me, who has followed every rule and met every deadline and gotten all the As and never done the bad things.

Whew.  I am sorry, again, I need to let this stuff out so that I can acknowledge it, honor it for what it is, and move on.  This is taking longer than I hoped, but we are moving forward.  There are some yucky physical side effects, but it could be so much worse.  I have $0 to contribute to my family upkeep starting Friday, but I have friends and family who will not let my kids become homeless or starve.  I know these things, but this has all been so much so quickly, I sometimes need to take this time to reflect and remember.  One day at a time, this will work out, and I, and my family, will be stronger for it.

Next post I promise cute pictures of the kids from their first days of school and the fun adventures they are having with their awesome Daddy!