Friday, May 19, 2017

A Day for Mom!

We had a very beautiful Mother's Day in Oxford and Memphis!  The weather was fantastic, and my kiddos were SO excited this year.  They kept giving me hints about my gift and being all hyper leading up to the weekend.  It was really precious.

Saturday, we attended our last Ole Miss baseball game of the year.  My amazing family got me season tickets this year, so we have been to a ton of games - but this was the last home-stand.  Ole Miss won, there were fireworks, Jeremy caught a t-shirt, and we had a great time!  I have to admit my favorite part was when my 5 year old daughter was scoring balls and strikes in my book and started yelling at the umpire when she felt he made a bad call. I feel as though my parenting work is officially done.

Sunday morning, I woke up early as I do, but i had to stay in bed because the kids have been telling me for weeks that I am supposed to get to "sleep forever" on Mother's Day.  When Violet finally joined me at around 7am, she was so upset with me.  "Mom, you need to sleep more!"

Turns out my awesome gift they had been hiding from me was the 2nd Harry Potter book in the new, gorgeous, illustrated version.  They gave me the 1st one for my birthday in March and we had just finished reading it as a family about a week before.  They were beyond excited to get started on the 2nd one.  Jeremy has read it before, but it is all new for Vi.  I love so much that they love Harry Potter.  I have kept all the movies and spoilers and everything away from them in the hopes they would love it, and so far it has worked!

I also got a metric tonne of handmade crafts from the kids.  They were so proud.  I am running out of space in my office and the house for displaying this stuff, but I try to keep the special ones.

Violet then did my nails.  For real.  We were getting ready for brunch (she insisted on wearing her flower girl dress) and she demanded we do our nails together.

We headed to Memphis to have brunch with my mom, my grandmother, and various aunts, uncles, and cousins.  It was beautiful, yummy, and expensive.

My mom is the real Wonder Woman, so I got her a plush doll and the promise of a mother-daughter day of fun to see the movie and have a meal in a few weeks.  This was her 50th birthday.  I love her.

Joey and Megan joined us for an afternoon at Guardians of the Galaxy, Vol 2 and then Japanese takeout for dinner.  Yummy and fun!

I feel as though TRUE Mother's Day began on the drive home, though.  We just passed into Mississippi on i-55 when Violet started breathing heavily saying her stomach hurt.  I will spare you the details, but here is a summary.  An hour and a half later, we got back on the road and headed home.  Violet was naked and wearing Brian's dress shirt, all the windows were down to keep the smell at bay, the kids were sitting on wads of toilet paper to keep their legs from sticking to the seats, Vi and I got to ride in a security guard golf cart, rest stops that only have air dryers and no paper towels should be outlawed, toilet paper dissolves in vomit, and projectile vomit x 3 in your car has the ability to get into every single nook and cranny and can indeed make it from the backseat to the front windshield.  In case you were wondering.

And my precious baby girl was so brave.  She never cried, tried to catch the vomit in her hands, and told me she would clean it all up herself since it was Mother's Day.  She kept telling me it was all OK.

So, like true motherhood, my special day was full of the highest of highs and the messiest of messes and the loveliest of loves.  Wouldn't change a thing.  Except my car still smells.  

Saturday, April 29, 2017

Easter Fun

Pretend for a moment with me that it has not been over a month since I updated this blog, mkay?

I love Easter.  It is a beautiful holiday and has always had positive memories for me.  I have tried to create the same for my kids.  This year, Brian took Jeremy fishing on Holy Saturday while Violet and I baked a bunny cake, made deviled eggs, and cleaned fruit for the party the next day.  Check out Jeremy's fish and the cake Violet helped make!

The bunny came that night and left some candy and two summer outfits for each kid.  He was even nice enough to leave both me and Brian a chocolate bunny and a treat.  He was given a few carrots for his trouble.  

The kids were delighted with their treats!  I have no doubt that one day they will realize what other kids are given for Easter and think I horribly abused them, but right now I am happy they don't see this as a holiday about toys or presents.  It is about the hunt and the fun and the family and yes, the sugar high. 

Our little family tradition includes the bunny hiding their eggs in the yard overnight for a quick little hunt first thing in the morning.  They are just full of jellybeans and candy with a golden egg for each with $5.  They love it.

Ok, fine, this little angel was not actually at our family egg hunt, but I can pretend, right?
After our little family fun, we headed to Memphis to spend time with extended family.  This year, my Aunt Lynn and Uncle Mike hosted everyone at their home and we had a great time with a big egg hunt, tons of food, and beautifully fantastic family.  I managed to get one family photo before Violet and Jeremy got covered in water from the fountain and dirt from the hunt. Aren't we cute?  

SO many thanks to Lynn and Mike for hosting a wonderful Easter.  I am so happy I got to spend a great holiday with my family.

Wednesday, March 15, 2017

Minor Setback

I don't like it when I am not given all the information I need to do my job, make informed decisions, help my kids, or you know, understand why I am all the sudden unable to eat, sleep, or function as a human being in any sense of the word.

But that is exactly what happened to me this past week.  And it sucked - big time.

As you know, I went to MD Anderson for my 6 week follow-up in February.  I had 3 days of packed doctor appointments, including my pain management doctor, who I like very much.  I do want to note that he is a wonderful doctor and has helped me tremendously with some really horribly pain during my cancer journey.  BUT, this is the second time he or his staff failed to give me all the pertinent information.  The first was when I initially went on methadone in August way back when my mom and sister were with me in Houston the very first time.  I still had a huge tumor growing in my mouth and was spitting up blood regularly.  Ugh, those memories are so awful.  Anyway, the pain was obviously horrible, so the doc, knowing everything I was about to go through as well, put me on methadone as a long-term less addictive pain killer.  What he did not tell me was that it takes several days for methadone to build up in your system.  He just said, take this instead, so that is exactly what I did.  I stopped my previous medication and took methadone.  Which immediately led to me writhing on the bed in intense pain for probably a day (? I was out of it and have no sense of time back then) until my mom yelled at them on the phone and found out I was supposed to take both medicines until the methadone built up in my system.

Gee, that would have been super nice to know.  Thanks.

Fast forward to February 22nd and I am happily talking with the doc about my lack of real pain (I no longer have "pain" in my neck and mouth, it is more just discomfort - it is hard to describe - it feels thick and stiff and weird).  We were all excited, and he gave me a slow plan to wean off the medicine - taking it down in gradual increments each week until I was down to none.  Yay!  I started that very day and moved from 3 does of 7.5ml daily to 3 doses of 5ml instead.  Perfect.  I was on my way to finally not having any outside crap in my body.  Woohoo!

Things progressed nicely for several weeks and I was finally down to only 1 dose of 2.5ml a day.  Right?  Only half a teaspoon once a day - so fantastic!  But then I started noticing a lack of energy, then a lack of appetite (which is a big deal since I am still way too thin and am trying to prove to different doctors that I don't need a feeding tube any longer).  Then my body temperature started fluctuating unexpectedly at random times.  I would be in the middle of a meeting at work and all the sudden I would be a block of ice to the point that I could not concentrate.  Then, in a matter of minutes, I would be so hot I could feel sweat pouring (seriously) down my back.  I tried to make light of it at work and to poor Brian who immediately noticed a difference, obviously.

Sleeping was the worst.  I could rely on my tube since I had no desire to eat, and I was kinda used to not having energy, though I was sad since I thought I was doing so much better in that area.  But the insomnia and temperature issues kept me tossing and turning all night. One night I remember changing clothes three times due to sweat but I was shaking uncontrollably with cold and did not actually sleep a single minute.

At that point, I knew something was wrong and contacted Houston and called out of work.  I also texted my mom and older sister for advice.  Cheri was the first one to officially figure it out, though I think I knew what was wrong the whole time, I just had no confirmation or information about it.

Methadone withdrawal.


I have never done drugs in my life.  I have never even held a cigarette (I know, I am weird, but no one has ever even offered them to me).  I have confiscated drugs in my job and have been through training on how to spot a meth lab in a dorm room and make sure I am up to date on the popular forms of drugs to watch for it in my college students.

But I was certainly never going to go through drug withdrawal.  It was something you see in movies about musicians with alcohol and pill problems.  Not college town moms who work a full-time job and did nothing wrong other than the apparently horrible sin of getting cancer with no risk factors.   I do recognize my privileged frame of reference, but the truth of it informs my experience.

So there I was reading the google articles Cheri pointed me to as I sweated and shivered under a blanket.  My shaking fingers read the text on my phone and clicked off all the symptoms one by one on the list.


That sucks.

The doctor finally called me back and confirmed.  I asked why no one told me to expect this - I do much better when I know what is coming, and he apologized and said some people don't experience it and it shouldn't have been so bad since we decreased so gradually.  He also reminded me it could have been much, much worse if I had just quit cold turkey.

Basically, there was not much to do, I just had to get through it at that point.  He said I could increase the amount I was taking to stave off the symptoms and in the meantime he could send me Valium or other medications to help, but I did not want to go backwards and I had already gone through several days and it supposedly only lasts about 10.

So I just spent the last 5 days at home, not working, not sleeping, not eating, and trying to hide my pitifulness from my kids.  I watched a lot of TV and movies on my ipad (flashback to chemo days!) and read a lot.  Distractions necessary.  About 20 different people told me to get some weed and a few offered to literally bring some over for me at that moment.  So sweet - I really have so many people who care about it me it is humbling.

Ultimately, I decided to grin and bear it the old fashioned way.  I did not increase my medication at all and am now officially taking zero meds for the first time in, sheesh, I guess since my first biopsy in early June.  The symptoms eventually slowed down and came less frequently.  I began to sleep in more than 30 minute increments, and that helped my energy.  My appetite slowly woke back up, and though eating is still a constant struggle, I am almost back where I was before.  I am back at work and wearing a short sleeved shirt in my office - with no cold shakes or sweats!  Whodathought?!

I am not actually sure it is totally over, but I feel mostly better.  I still have some temperature issues and am not sleeping well, but definitely better.

I like 'better' in whatever form it comes to me these days.

My kids were confused, but I just told them that I was saying goodbye to all my medicines and it would make me sick for a few days.  They were happy for me, probably remembering the sink covered in pill bottles, then liquid bottles, for months.  I am not sure if I am thankful for the fact that they know how to handle a mommy who lays on the couch in pajamas for days on end or if that is sad.  I'll take it as a good thing for now knowing that it will not be the norm for their memories of me.  It is what it is, I hope to God it is over, and I write this to process my feelings, record my reality, and maybe help someone else who could be caught as unaware as I was.

Minor setbacks on the road to full recovery.

Surely that is all, now.  Right?  Right?

Wednesday, March 1, 2017

Jeremy Turned 9! (Back in December...)

I am so awful, but better late than never!  Back in December right in the middle of my daily radiation treatments in Houston, my oldest child got even older.  My baby boy somehow turned 9 years old!  It hurt my heart so much not to be there with him, but Aunt Cheri happened to be on kid duty that week and she made sure he had a wonderful day and party!

On his actual birthday, Cheri made him treats for his class and took him to get frozen yogurt after school.

She also planned his birthday party at the Oxford Bowling Alley and Arcade.  She made the invitations, RSVP-ed with the parents, reserved the space, bought the presents, and made the cake.  I feel so bad for missing this time with him, but I cannot imagine anyone doing a better job that my amazing big sister.

They had a blast at the bowling alley with friends and family celebrating our crazy little man!

Jeremy will always be my first born - the baby I dreamed about and toddler who stole my heart.  I lost more sleep over him than I ever have for Violet, and I am still so proud of all he has accomplished.  He is a big 3rd grader and his interests lie in being a train engineer or a crash test engineer.  He loves to build things and has an eye for details - when he wants to (so, not so much when it comes to tedious school work, for example).  We recently signed him up for a week-long inventor summer camp and he is over the moon excited.  Where I would have wanted to attend dance camp or play a sport, Jeremy wants to go to inventor camp and build a homemade alarm clock.  He reads voraciously, has the absolute best sense of humor, and can bring me to my knees with those huge blue eyes.  He is getting more independent each day, but he still sleeps with his Mrs. Moo wrapped in his arms.  He loves video games, the apps on his phone, and you tube - but, he only gets to do those things on weekends.  He is patient and kind to his sister, and his teacher tells us he is never without a friend at his side and is universally liked in class.  He still meets with a counselor once a week to talk through his mommy's cancer, and he struggles with paying attention in class and in general not caring about his school work.  He is honest, determined, creative, and funny.  He has way too much hair and never unbuttons his pants since he is so skinny with no hips.  He is super hyper and never stops moving.  I cannot believe how huge his feet are.  He still floods the bathroom when he takes a shower, and he has an insatiable sweet tooth.  He is the best and he is mine and I love him to pieces.  Happy Birthday a little late, my man.  I love you and promise to never miss a birthday again if I can help it.
I love this picture that was texted to me while I was in Houston.  He is hugging a new toy he got from a friend, but you can see Mrs. Moo peeking out from under his head.  He has the sweetest smile.  Snug as a bug in a rug.

Friday, February 24, 2017

Cancer Free!

Brian and I just got back from a quick (for us) 3 day trip to Houston where I finally heard that my months of treatments worked and I am officially cancer free!  I will go back every three months for the first two years (the risky years), then it slowly comes down to every 6 months, then once a year for the rest of my life to keep monitoring and making sure I am in the clear.
Me in Dr. Rosenthal's office right after I heard the news!
I also had a little bone spur removed from my gums, got information on my bridge, got re-inspired to work harder on my swallow exercises, and no longer have to wrap my arm.  My biggest concerns were simply the minor swallowing issue and how weird my arm feels to now be bandage-free.  I also still have my feeding tube, which was expected.  I know for sure it will be gone at our next visit on May 22nd, though.  I have to be able to maintain my weight for 2 weeks without using it at all.  Right now, I am able to eat more and more real food each day, but we are talking a few small bites of various bland, soft food.  No actual meals.  My weight is down to 135 (I have lost almost 30 pounds since this started - don't judge my weight Cheri and Dani, I am much taller than you both), which is less than I was at my wedding.  People think I am happy when I share this, but I am not.  This is certainly not how I wanted to lose weight (nor did I ever want or need to lose that much for my height and frame), and I look bad.  Like, sickly weird thin (for me) with no muscle tone versus healthy glowing thin and fit, which is what I want.

My plan is to start a regular regimen of walking and low-effort yoga.  I have to start very small since I have no energy and have lost all my muscle.  I'll get it back, though.  Just knowing that I am in the clear and don't have to start back up on that that horrible treatment makes me so positive and excited about the future.

I have slowly been getting my taste buds back, so that will help with eating as well.  It is hard to make yourself eat when you can't taste the food - the enjoyment is completely gone.  While we were in Houston, I ate one Reese's peanut butter cup - slowly and in tiny bites - and when the peanut butter taste exploded in my mouth I almost cried.  I can barely taste chocolate at all, but that peanut butter was so vibrant!  It is funny the things we take for granted, huh?

My swallowing concern is a minor one, but still a big deal.  Though my ability to swallow drinks and food has increased dramatically the past few weeks, I am told it will be a life-long struggle.  My speech therapist said some people come back 20 years later and describe new issues.  I have head and neck exercises, as well as swallow exercises that I do every single day to try to help.  So my issue right now is that when I drink a liquid, some of it is able to get into the area where my voice box is located since my muscles don't pinch shut as tightly as they once did.  This causes me to have to clear my throat after every single sip of water.  I need to do my swallow exercises multiple times a  day now to hopefully counteract that issue and make my muscles stronger in that area.
This one is not me, but we got to watch a video of my barium swallow study that looked just like  this - it was pretty cool.
I bought an MD Anderson t-shirt while we were there.  It is funny, I have seen them for months and I told myself when I got good news I would buy one and wear it proudly.

There is also this sign right by the check-in desk at the Head and Neck Center where many of my appointments have been over the months - including my very first one.

Over the months I have read that sign with varying emotions - doubt, annoyance, anger, inspiration, etc.  This trip, I saw it and smiled.  For the first time, I actually felt like a survivor rather than just a fighter or a depressed patient (let's be real).  It was a good feeling and it struck me how that one little sign tracks my emotions through this journey so well.

We got home from the airport around 11pm, but I had to go in and hug the kids.  Brian and I laid on top of them in their beds (I know, we are nice parents) and woke them up to say we were home and reiterate my good news (Mom told them as soon as we found out - Jeremy was so nervous).  When I got back to my office, I found the huge sign below, and I received so many sweet texts, emails, cards, and hugs from my staff, colleagues, and bosses at work.  So sweet.

I am relieved, happy, and exhausted.  I feel like anyone who has fought cancer can understand this perfectly, but the waiting continues.  I think I will be waiting forever.  I will be tested the rest of my life...just to be sure.  I hope so much that I never have to go through that again, and I feel really confident that I won't, but the possibility remains and always will.

My goal now is to turn my attention to living my life in the best way possible.  Surviving cancer does not magically make me a better or more profound person, but I am going to do my best to live my life more fully and to live up to the many prayers and kind words bestowed on me by so many during this struggle.  I want to give back more than I have been given and be the person who truly deserves the blessings I have received.  I hope that I can take this experience and make it serve a lasting purpose beyond the scars on my tongue, neck, arm, and leg.  I want to leave my own marks and now is the time to figure out just how I want to make that happen.

I am so grateful just to have the opportunity.