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Thursday, December 29, 2016

Radiation

In honor of tomorrow being my last day of treatment, I figured it was time to dust off the blog and record this pivotal experience in my life.

Recap: as you know, I was given a 3-part treatment plan which started with induction chemotherapy, then surgery to remove the tumor, and finally radiation to kill any tiny spots we can't see and also to prevent recurrence.

I completed the first two steps and have recorded my chemo and surgery experiences at length on the blog, so here we go with radiation.

A group of about 8 of us started the treatment at the same time. We had to watch a whole video and have an in person lecture about the side effects and how to care for yourself properly while this treatment tries to break you down.  I have to say, this made me a little worried.  We did not have fancy video warnings for chemo and surgery, and boy those side effects were awful.  It appeared to me that this whole radiation game was not going to be holding back.  The interesting part is that the side effects don't show up for several weeks, so at first it seems like nothing, then WHAM, all the sudden you wake up and realize that video you saw back on day one was not messing around.

My schedule was radiation therapy every day M-F, usually around 11am for 6 weeks, or 30 treatments.  On Wednesdays I also had appointments with Dr. Rosenthal (my radiation oncologist) and Dr. Kies (my chemo oncologist) and had my actual chemo treatments.  Throwing chemo into this mix meant that I did not get to experience those first few weeks of bliss before side effects show up.

Chemo and I are not friends.  I was so nauseous and sick and had several days each week where I did get out of bed the nausea and dizziness were so bad.  I am thankful I have my feeding tube because even when I was sick Brian could keep me on my medications and keep me hydrated and fed.

Let's see, how about a little rundown of a typical Wednesday since they hit everything:


  • 9am: Brian and I arrive at MD Anderson and proceed to the Lab to have my weekly blood work done.  It takes the nurse two tries to find a good vein, but we get there in the end and 2 tubes are full of my blood.
  • 10am: Brian and I head to my appointment with Dr. Rosenthal.  He meets with me weekly to check how I am handling the side effects of radiation now that they have kicked in.  He gives me weird medicated foam dressings for my neck and chin since the burn is getting pretty bad.  He looks in my mouth and offers sympathy once he sees all the sores.  He and his team also talk to us about nutrition and mental health during these visits.  I like Dr. Rosenthal.
  • 11am: Brian and I head down one floor to receive my radiation treatment.  I have a card that I scan when I arrive, then when it is my turn I head into the treatment room and remove my clothes from the waist up.  I get on the table and Joel and Jace (my two really sweet radiation techs) put a silicone guard over my neck scar, give me my mouth stent to protect my teeth and keep my tongue in place, and strap me into my face cage.  They make sure I am lined up properly (this sometimes takes a while since I was losing weight and therefore making my body a different size and the radiation has to be absolutely precise so as to get at my bad spots while not damaging the good ones).  I always appreciated their thoroughness.  Once I am in the right spot, they head out and the huge machine I am on comes to life and circles all around me shooting tiny green life saving lasers at my cancer site.  The whole thing, from walking in to walking out, usually takes 15 minutes.  
  • 1pm: We head next to see Dr. Kies for our weekly check-up with him.  He is so very kind, and really listens to our concerns and tries to make things as comfortable as possible while maintaining the strict plan that this will be curative - period.  Love it.  We talk about my nausea and how I had to jump out of the car twice to throw up on the side of the street. He changes my medication after 2 weeks and then finally just cancels my last treatment altogether.  He says based on my blood work we got great results and there is no reason I should be in so much distress when we have already achieved our goal. Did I mention I love Dr. Kies?
  • 4pm: We get back from eating somewhere (well, Brian eats and for a few weeks I eat soup but by the last few weeks, I just sit and watch while he eats) and head to my chemo treatment.  I check in with the Ambulatory Treatment Center, then I head to the Infusion Center to start my IV.  Remember how it took the nurse 2 tries to get blood?  Well, this is worse.  They need a nice big vein for chemo drugs and my veins are shot after all of this.  Most people just get a quick IV put in at the actual chemo place.  I have to go to the Infusion Center because I need the best of the best to find my veins.  Long story short, it usually took about 4 sticks in my arm before they find one.  One time they used the bend of my arm so I couldn't move.  Several times they did it in my hand, which is really painful and does not hold up well with chemo.  They always have to use the ultrasound machine to see my veins at all. Once my IV is finally in, I go back to the Ambulatory Treatment Center and get my chemo.  They are always running 1-2 hours behind schedule.  Always.  I get my pre-medications (nausea and a steroid), then chemo, then some fluids.  2 of my 5 treatments went well.  2 of them saw my arm or hand (wherever the IV was) swell up which means the medicine is no longer going into my vein, it is now just filling up the area around it and my hand or arm starts to look like a balloon and it is SO incredibly painful.  The last time, we ended up not even doing the fluids due to pain. Chemo sucks.  (I feel like I have said that before)
  • 10pm: We finally get home way later than we anticipated and literally fall into bed to get the needed sleep to head to radiation again in the morning.
And that, my friends, is my experience.  I have my final treatment tomorrow morning and we fly home tomorrow night and don't have to come back until late February.  My current state is not great - I am pretty confident in saying that once again, I have exceeded expectations and managed to get every single side effect.  I currently cannot talk or swallow without intense pain.  I have sores all down my tongue and in my mouth.  I have nasty mucus being formed in the back of my throat that I have been told I need to spit out rather than swallow to help with nausea, plus, gross.  The problem is that my tongue is not great at the spitting motion (remember I only have half a real tongue trying to teach my arm tongue how to keep up) and now with all these sores it is so awful.  If I hit my tongue sores on my teeth...oh, I bit my tongue earlier today and found myself crying like a baby on the bed.  My "radiation sunburn" is pretty bad as well.  It just showed up this last week and it is gross.  I have dressings I have to wear, which make me look like a crazy person, but they work, so I happily wear them.  Overall, this has been a very long process and I am SO glad that tomorrow is the end and I am headed home!  I am told side effects will remain for 2 weeks after last treatment, but then will slowly start to improve. 

Some pictures for your viewing pleasure:
Getting chemo early on in the radiation process
My beautiful niece Penelope came with me to my last radiation before Christmas, and here she is scanning me in with my card


In this pic, I have my mouth stent in and my mask is on - you can see Jace and Joel snapping me into place so I can't accidentally move and mess it up

In this one, you can see the machine.  It rotates around me and shoots out radiation (haha) - it administers radiation to the precise locations that Jace and  Joel tell it to via computers and cameras in the next room
This just cracks me up - this is the first stage of my dressings for the burn.  They give you big rectangular sheets of medicated foam and you cut them to fit the area you need.  I have since given up on trying to do the upper lip - not possible to stay on.  The neck part is most important...
...and you can see why.  Look at how bad it has gotten!  I took this picture today right before putting my dressings back on after radiation
This is me right after I walk out of the radiation treatment room.  You can see the marks on my head from the cage to understand how tightly they strap you down.  Even more reasons for people to stare at me in public as if I am some crazy monster.  
My radiation ends tomorrow, which means my 3-part treatment program that I started back in August is finally finished.  It always seemed so far away, so impossible to achieve.  It was a bumpy road with more lows than highs, but once I get my scans back in February with the good news, it will all have been more than worth it!

Monday, November 14, 2016

Grrrrr

Today I am pissed.

Stop reading now if you are not in the mood for completely irrational, emotional, and insane whining.  I have warned you.

Brian and I are once again in Houston - inconveniencing Kendall, my mom, my brother, and his wife.  Using up the money and flyer miles of friends and family.  Ignoring and once again not raising our children.  It's cool.

I am here to "prep" for radiation.  Awesome.  I went to the cancer dentist and had a contraption made for my mouth that will hold down my tongue and protect certain parts of my mouth during radiation.  It is horrifying - like the worst retainer known to man.  And my mouth is still massively swollen from surgery to the point that I cannot open it properly, I can't speak properly, and I eat out of a tube in my stomach rather than my mouth - for 4 freaking weeks now with no end in sight.

Anyway, I got a horrible mouth thing made then I got a head, neck, and shoulder cage made.  Yep.  That's right.  I don't actually know what it is called, but this is what it looks like.

They made one that fits me today and I will wear it everyday, 5 days a week, for 6 weeks starting Monday during my radiation treatments.  They literally strap and lock me to the table with it.  Fancy.  Oh, and I have to wear the mouth thing at the same time.  Fun.

I am tired of consent forms.

I cannot even count how many I have signed at this point.  Today, I signed the radiation ones.  You know, the ones that say I understand I may get mouth ulcers, skin blisters, permanent dry mouth, loss of the few remaining taste buds I have, etc etc etc.  The best part about radiation side effects as opposed to chemo or surgery ones is that they are long-term and/or permanent!  Jackpot!  I don't need to be able to swallow.  Not important for my life!

Oh, and I have to pay $300 for fluoride trays that I will have to use on my teeth every single day for the rest of my life if I don't want my teeth to rot out after radiation.  For the rest of my life.  

May I remind you that they already pulled 4 (4!!!) of my molars during surgery because my mouth was too small.  This has caused the other ones to get even more crowded (like that was possible), so maybe I want them to rot out and just save the $300 bucks.  No one gave me that choice.  Hmmm.  I already have to get a denture for the entire row of missing molars on my left side, why not just do them all while we're at it?

Oh, and do you want to hear my absolute favorite news of the day?

Apparently, I will be getting chemo along with my radiation.

Chemo.  CHEMO.  As in chemotherapy.  As in it put me in the hospital for a week.  As in I hate it.  As in I already rang the damn bell and was told this shit was over.

And all those radiation side effects?  They are more likely and more powerful when the radiation is paired with chemo.  Plus, we remember the fun chemo side effects don't we, class?

The hits just keep on coming!

And my plastic surgeon told me to take the bandage off my thigh skin graft site, to put some aquaphor (lotion) on it, and go about my day.  Cool.  I took the bandage off, screamed bloody murder, put on the aquaphor while my hands were shaking and I tried not to go into shock from the pain, and then stood there wondering what the hell I am supposed to do now with a bloody pulp of a thigh covered in Vaseline.  I specifically asked him if I cover it and he said no.  Hmm.  How does this work on planet Earth?  I ended up putting on a nightgown and tucking the end of it into my underwear to keep it from hitting the pulpy mess.  It goes very high on my thigh.  Like indecent.  At night I cover it so I don't have to buy new sheets and today I also covered it so that I don't have bloody Vaseline pulp jeans.  It may never heal since I am not following instructions, but when said instructions are stupid, I'm out.

And my arm is still wrapped.  It does seem to be getting better (I can dress it myself now so Brian doesn't have to), but I still get shooting pains up and down it when I make a fist or move my fingers or straighten it or lift it over my head.  So, you know, there's that.

My last appointment today was with a speech therapist.  She gave me two pages of swallow exercises I have to do everyday, 7 days a week, for 8 months.  Some of them are literally impossible for me to currently do since my tongue is hugely swollen still and I can't move my neck well due to surgery scars, swelling, and pain.  I ended up crying and snotting all over her office.  It was classy.  The day just got to me.  Random strangers in the elevator offered me hugs and words of support.  I am officially that person.  Ugh.

So, here I am.  I spent my day whining and wallowing.  I hate my life at this moment.  I am making everyone else's life worse and I feel like shit on top of steaming shit.  I know I am being self-indulgent, not helpful, and ridiculous.  But you know what?  I don't care.  At all.  

I'll say something nice some other day.  Today I am pissed.

Saturday, October 29, 2016

My Heart

After a kind of negative (but 100% honest) post last time, I am going to focus today on my loves.  The wonderful people who get me through the day, because sometimes it is really hard to get through the hours.

First up, I have not thanked her enough, but Kendall has opened her home to us for ALL of our Houston visits, AND let us use her car.  This has saved us literally thousands of dollars.  And she is just incredibly kind.  She has bought us food, washed our linens, and helped me get the gunk out from under my fingernails last night (I can't shower or even wash my hands properly - I am gross).  Thank you for being so generous, Kendall! 

Second, my babies.  They are being watched by a rotating committee back in Oxford and Memphis, and I love them all so much for helping.  From my staff members at Ole Miss to Emily to Jeremy's friend Isaac's family, so many people have stepped up to volunteer who did not have to, and we appreciate you more than you know.  My family in Memphis has taken on the biggest load and have spent the night at our house for large chunks of time taking time off work and their own incredibly busy lives.  Thank you to Megan, Dani, Joey, and Mom for your selfless love of your niece/nephew/grandchildren.  You say it is silly, of course you would do anything for them, but the reality is there are so many families who don't help each other out or so quickly and lovingly step up to help with no thought of payment in any form.  I just love you all so much.  And I cannot leave put Cheri, who despite living in NYC and therefore not physically watching the kids, she set up the whole care schedule, which is super complicated, so hats off to her.

Brian and I miss the children so much it is insane.  I see the photos I am sent and it just makes me cry.  I simply cannot believe we are missing Halloween.  Ugh.  We call them on speaker phone at night and their little voices are so beautiful.  They sound so happy.  I can only grunt, but they are convinced I can say "hi" and a few other things.  Bless them.  We are not ready for Skype until my face has healed a bit more.  We were given a DVD and a bag of goodies for helping explain cancer to kids.  We have already done a lot of that explaining, but I think the physical changes from my surgery are scarier than the hair loss (they witnessed the cut to soften that blow) and the stomach tube (which is under my clothes so not really a constant issue).  I have hope the drain may be gone before we go home, but the trach will most likely still be in place.  That plus the neck scars plus my tongue plus my arm and leg will be a lot for them. 😔

Some of the photos we have been sent over the weeks from various people: (I am doing this on my iPad so I can't size the photos properly - sorry if this looks weird when published)


Finally, I have talked about him in every single other post, but my husband is simply the most wonderful person ever.  

This was written about Brian.  We actually had it as a reading at our wedding (I was chosen to read it as a 5th grader at a big Mass with the Bishop so it has always been special to me), but it was not until this ordeal that I finally see these words coming to life and walking and talking before my eyes.

Brian has been so selfless, gentle, dedicated, loving, and fantastic.  He has also been terrified, sad, stressed, mad, and frustrated.  He gives me all of my medicine via syringes into my PEG tube.  He has a chart to keep up with them all - and they are around the clock, even at 4am.  He cleans all of my wounds daily.  My arm donor site is insane.  I have an open nasty wound from wrist to elbow where they took skin and muscle from my forearm to reconstruct my tongue.  It is a huge, deep wound, and he has to clean it daily.  While I cry from pain daily.  He does such a good job, and I try not to cry, but it freaking hurts like hell.  He hates to hurt me, but it is not him.  He holds my good hand while we sleep. He reads to me since I can't hold a book properly (which sucks, I had a pile of books I bought for my recovery not realizing I could not hold them).  This made the nurses totally fall in love with Brian, by the way - the reading.  So sweet.  He is an excellent orator.  

I am so lucky.  My husband is not perfect.  I told you about the skillet in the last post (heehee), and yesterday he accidentally squirted oxycodone (bright red liquid pain reliever) out of the syringe onto the wall and ceiling in our guest bathroom at Kendall's.  He was so mad.  It was hilarious.  As was watching him climb onto the sink to clean it up.  

That's why I love him so much.  He is so real.  He lets his emotions out.  He cried when talking to the kids the other day and he cussed when we got the run-around from a dumb nurse on the phone.  I love that - his honesty and his fierce love for me.  When we get good news about my progress, no matter how minor, Brian always has to take a moment to collect himself.  He is SO invested in my recovery and cure.  I seriously could not ask for a more wonderful partner to walk through this nightmare with me.  He brings the light that helps us see through the dark.  My light falters regularly, but his can be counted on to be shining brightly even in the darkest of times.  

Thank You so much for giving him to me.  

I am still trying to figure out the big picture and the "why" of all of this.  I know there is a reason I have been chosen to deal with this, and so far, the one clear positive I see daily is the love and care in the eyes of my handsome husband.  

Thursday, October 27, 2016

Out of the Hospital...Out of Control

We were discharged from the hospital on Tuesday late afternoon and came "home" to Kendall's house here in Houston.  She is Brian's cousin and has so amazingly let us stay with her during all of our trips to Houston (after the first one when I came with mom and Cheri).  Kendall is currently out of town, which is a very good thing since Brian and I are a total mess and really no one needs to witness this.

It is so funny, people keep saying, "yay!  You are out!  Aren't you so happy?"  Sure, I am so happy to no longer have professionals respond at the touch of a button.  I am happy to leave my cool bed that I can adjust with a remote and endless pillows and clean sheets whenever I ask.  I have wound drains and skin grafts and huge gauze dressings and injection tubes and bite blocks and tongue stitches and my medication list at discharge was 2 pages long.  But yes, I am super excited to go to my not home and have my poor scared-he-will-mess-up-and-hurt-me husband do all the things that took teams of nurses and doctors to do around the clock.

Yes,  we are super duper happy to be out of the hospital.  Does it make you feel better for me to say that?  Ok.  We are delighted.

In the day and a half that we have been out, we have had to call the emergency line twice and have broken down sobbing (yes, both of us) countless times.  I am in a shit-ton of pain and feel so guilty for putting everyone through this, and my amazing husband is terrified of hurting me or messing up the incredibly complicated medicine schedule (all of which has to be measured and administered via various sized syringes in my stomach PEG tube).  

The first night we were out, after hours (not exaggerating) of prep with medicines and gauze, etc. to get in bed, we noticed the skin graft blood/fluid bag on my leg had burst.  Blood and wound fluid all over the beautiful guest room bed and still dripping.  Brian freaked out and grabbed the first thing he could find - a skillet - and put my leg so that the blood all drained into the skillet.  Yummy.  We had no freaking idea what to do.  We had no instructions on the skin graft leg site since it wasn't supposed to need anything from us this week.  We couldn't even remember which of our three doctors we were supposed to call for that particular site.  But, my lovely better half only let his panic last a minute or two before his awesomeness kicked in and in the end I have a much better secured and very little pain skin graft donor site lovingly wrapped up in gauze and tape like a pro.  It was funny and crazy and scary for a hot minute, though.  And my big concern - Kendall's mattress - all is good, Brian did laundry to clean the bedding and the blood did not seep into the mattress at all. 

And the skillet has been washed and is ready for a blood-free meal.  
I know you were worried.

Today, we just finished our morning medicine injections, measuring drain fluid output for our chart, changing the ointment, gauze, and wraps on the absolutely horrific and huge wound on my arm, when I noticed I had some sort of liquid running down my stomach from my neck area.  Now, this could be like a thousand different things: trach fluid, drain fluid, actual blood, drippage from my mouth or tongue (happens constantly since my mouth is open all the time), tube leakage, etc.  I grunted (I really am a monster) and Brian abruptly ended a call with his brother to figure out where the mess was coming from.  It look a while and he had to remove my trach collar, which is so scary because it holds everything in place and if the trach falls out, well, I don't even want to think about that.

Brian found the source of the fluid was the hole in my chest where they removed a drain before we left the hospital.  That area was supposed to be done, but here it was literally squinting out fluid (like a mix of yellow fluid and watery blood), that was by now totally sopping my whole torso and nightgown.  Sexy.  

Long story short, I am happy to say we panicked even less this time around and after some time spent naked in the kitchen getting cleaned and wrapped back up by my increasingly skilled husband, I am now in a clean gown with split drain sponges in place and comfily sitting on the couch writing this post.

We have talked to lots of nurses and doctors and I am so proud of Brian.  He has been able to follow some very complicated instructions and is really impressive.  It gets to us, and we let the stress and fear out at times, but overall, I think we are making a good team and doing ok.  He is translating my grunts really well.  ☺️. He reads to me at night (I can't hold a book), and we talk a lot about the kids and go through old pictures of them on our phones.  We miss them a ton.  

Again, sure, we are out of the hospital, but we are not home.  We are out of the hospital, but I can't talk or eat.  We are out of the hospital, but we spend about 8 hours a day on wound-care, medicine, tube feeds, ointment application, tongue cleaning, etc.  We are out of the hospital, but I still wake up in the middle of the night crying for pain meds.  We are out of the hospital, but we are not overly happy.  

Is that ok?  I think people want us to be happy so they are projecting it upon us.  Really, though, we just want our reality to be validated.  This sucks.  It fucking sucks.  There is absolutely nothing happy about where we are right now in this process.  Stop trying to make me find a silver lining.  I am not dumb.  I know it will pass and that I am getting better every day.  I know.  Stop shoving it down my throat.  Right now, we are in the trenches and it is not pretty.  Acknowledge our now.  It is shitty.  Period.  I want to throw stuff, but I am not allowed to exert energy or lift my arms above the shoulder, damn it. 

Sunday, October 23, 2016

Recovery...if that's what you want to call it

Well, as my last insane post possibly implied, I had surgery on Monday.  Today is Sunday, and writing this is still exceptionally difficult (and being done using one finger to type one letter at a time).  I am still in the hospital, and I still feel horrific.

Do you want to hear about it?

Have you eaten recently?

So, first of all, the surgery was a huge success!!  Dr. Weber got out all the cancer.  Brian apparently made him say it 3 times.  They ended up removing half the tongue, several lymph nodes, the whole left side floor of my mouth, and my back 4 bottom teeth - but he did not have to take jawbone.  I am kinda shocked about the teeth, but they did it to make room to reconstruct and attach the new tongue, so ok I guess.  The pathology report came back and confirmed all the cancer is removed, and showed there was indeed a small cancer spot in one lymph node, so I am so glad he removed them even though it showed clear on all the tests.  Thank God.  I really don't want to do this again.  

Dr. Merclili then took over and reconstructed the floor of the mouth and the tongue.  He was able to use my forearm for the needed skin and muscle, so yay for arm-tongue!  He then took a skin graft from my thigh to cover the arm donor site.  

My arm is currently in a pressurized splint - the tubes coming out of it are to various drains for blood and fluid.  One drain on my arm goes into a machine that actually pumps the blood and fluid out.

I also have drains (these are the drain receptacles) pinned to my gown - I have 3 - gross, right?

Here is part of my skin graft site on my thigh.  It is in like a plastic bubble for healing.  Strange.

I also have a huge scar across my neck on the left side - from behind my ear to my chin.  That is where they went in to do the surgery.  

My mouth is the strangest part.  I cannot close it, and in case I wanted to even try, I have a bite blocker in my mouth, which holds my mouth open - 24/7 - for almost a week now.  Try to imagine that, please. It is horrific.  Just being real.  

Half my tongue is real and the other half is arm and called a flap.  They check my flap every hour (I get tons of great sleep, haha), and apparently it started out two different colors but now is getting more matchy and everyone raves about how much the swelling has gone down already.  It has been checking out perfectly in terms of connecting properly with the blood vessels, etc ever since the beginning, which is cool.  I feel confident it will heal really well thanks to my fabulous team of doctors.  But it freaking sucks right now.  Sucks.  I hate it.  So much pain I cannot even describe.

Finally, I have my tracheostomy, which I just got downsized yesterday, on my throat so I can breathe.  I start meeting with speech and physical therapy tomorrow to learn to talk with the trach and to start swallowing with my new tongue.  We were assuming the trach would be gone before we leave the hospital, but apparently that is wrong.  We may even still have it when we go back to MS a week after discharge, which really sucks since I didn't want the kids to see me needing/using one.  Ugh. 

You will notice there are no pictures of my scar, trach, or mouth.  I have not yet been strong enough to look at myself.  

I know.

No photos, and I had the nurses cover the mirrors for me.  I have gotten more feeling back in the last few days and got brave enough to feel around a bit with my hands.  From what I can tell, my neck is about three times its normal size, my left cheek is twice its size, and based on the looks of people when I walk the halls, I am some sort of disgusting monster.  It's cool.  Brian says I am beautiful and while super swollen, it is not that bad.  I have 2 days before discharge, so I need to learn to look at myself soon.  

Discharge also means poor Brian takes on my home care.  He had to go to a class on trach care, and while we are hoping not to have them (fingers crossed), he also had to learn to take care of my wound drains.  I do not have the words for how lucky I am to have Brian.  He has not left my side.  He waited over 12 hours during my surgery and sent updates to friends and family.  He sleeps every night on the uncomfortable fold-out chair in my room.  He is so fantastic.  All the nurses love him and tell me they love working with us because they enjoy seeing how devoted Brian is to me.  He puts cream on my lips and my real tongue side, helps translate my grunts, holds my tubes and IV poles when we go on walks, gives me sponge baths and foot massages, and lets me cry on him at least 3 times every day when I decide I can't make it anymore.  

I wrote this on my ever-present dry erase board to have him remind me to calm down and take things slowly.  This was after I freaked out and cried and he talked me off the ledge.

So here we are.  I am told by every doctor and nurse that I am healing quickly and extremely well.  Everyone reminds me that it just takes times and the swelling will go down.  I know this.  I have already gotten off the catheter and IV.  The drain pump comes off tomorrow, so my only tubes or wires will be my peg tube for meals - which is exclusively how I eat now.  

I am recovering, but it is going to take a loooong time before I feel better.  

I am ending with a photo of my precious monsters from Megan.  I miss them so much it hurts.  But, they are having such a great time with the literal community of people who have come together to help us raise them.  Oh, my heart.  Look at them.  Please let them know how much I love them and that I fight through this for them.

Monday, October 17, 2016

Here We Go

I am currently sitting in the waiting room for my surgery.  

I am not sure how I am supposed to feel right now.  

Brian and I went out last night and had the most amazing meal ever.  I was told by my doctors to go and enjoy my favorite foods, and I was encouraged to splurge since this could be the last time I ever taste food somewhat properly.  Houston recommendations had us end up at Truluck's, which is known for its seafood and steaks.  Oh my goodness, it was definitely the best meal ever - and thmost expensive one I have ever had.  I got a virgin strawberry daiquiri, crab Mac and cheese, a hothouse tomatoe salad with hot bacon and buttermilk dressing, then surf and turf filet and lobster tail with asparagus.  It was a religious experience and totally the best food ever.  Then, of course, we ordered dessert and the manager gave us two desserts for free!  Well, our waiter bought us one and the manager bought the other one.  People are so nice!  We had a berry and cream layered pound cake surrounded by chocolate and then also a baked Alaska, which was so fun to see set on fire!  Again, best desserts ever!  I totally recommend Truluck's if you are super rich and happen to be in Houston with a million dollars to spend.  The food was phenomenal and the staff was even better.

And it was so great at keeping my mind off of surgery and just enjoying good food with my favorite guy.

I finished my Harry Potter re-read and movie watch.  I forget every time how much I love these books.  The movies get better as they go along.  I feel kinda empty now that I am finished with them, but I have a big stack of books lined up for my hospital stay and recovery in Houston.  Again, gotta keep my mind occupied and off my actual life,

I spoke with Jeremy and Violet last night.  They are currently with my sister, Dani, who is so nice to give up 5 days to stay with them in Oxford and cart them around to play dates and sacrament classes and school.  She is the best.  Their little voices are so wonderful to hear.  Violet speaks for both herself and Slipper these days, so I got to hear all about her day from two perspectives.  Jeremy seemed sad a little so I kept a very upbeat voice and attitude.  I warned them I won't be able to speak to them for a little while, but I will be able to hear them and Daddy will be callIing them every day.  Gosh I miss them. I know it is dumb, but while their care is totally covered - they will eat, sleep, get to school, 

Ooh, nurse came and now I am in a little room and have put on my gown and all my clothes in the little white paper bag.  Vital signs will be taken soon.

Anyway, I know the kids will be fed and taken to school and played with, but no one will hug them like I do.  Jeremy does not invite hugs, and neither really does Violet, but they love them.  I cuddle them in bed and squeeze out their stuffing.  I sneak in at night and kiss them and retuck the covers and say "Mommy loves you" - almost every night since they were teeny tiny.  They are usually sound asleep when I do it, but sometimes I see that little twitch of the lips that lets me know they are awake and happy I am there with my sentimental mom-ness.

I don't want them to miss any of the love.  The care is there, but I want them to know they are so loved.

Ok, well, it was funny brushing my teeth this morning.  I will most likely wake up later tonight without back teeth on the left side, so I said a little goodbye to my teeth.  I have a love/hate relationship with them.  They are so horribly crooked and yellow, but I have never had a cavity or any real issues, so I do thank them for their service.  You will be missed.

I do not thank my tongue for its service or say goodbye to it.  I am happy to have this cancer cut out and removed.  I have dealt with this weird tongue thing for over 5 years now, and I am done.  Ready to go.  Get out and stop trying to attack the rest of my body.  Good riddance.  I am delighted to keep half of you, the rest can get on out and let the door hit you.

Hmm. Let's see... Keeping my mind occupied in the hospital...I hate hospital gowns.  Everyone can totally see my butt when I get up and walk since I had to take everything off.  Even I don't want to see that.  Yuck.

I posted on Facebook about my vanity.  I feel silly, and really it has just now hit me.  My hair falling out is not a big deal to me since I know it will grow right back in a few months.  I have weird acne all over my face and back due to chemo and my cheeks and stomach are super swollen and puffy due to my steroids, but again, all temporary.  This surgery, however, can drastically change my face.  I will have a large scar on the side of my neck along my jaw line and depending on what happens when they are in there, I could have jaw bone removed.  That would change the shape of my face.  And my tongue is going to be weird for about a year until I get it contoured they said.  What?!  So weird.  I am going to have my tongue contoured.  How very Kardashian of me.

I don't want to seem petty, but I have not been an unfortunate looking person throughout my life.  I am not beautiful, but I think I am pretty (if I keep my mouth shut and don't show the teeth).  It is strange to know I am going to be ugly - at least for a while.  And this is not me being silly, this is what the doctors and nurses have warned us about.  They said to be patient and remember it will all settle down and I will look normal again one day.  But, they used the word ugly, so I feel justified in saying it as well.  I have told Brian to not let me - ooh, nurse just came in with warm blankets, yay! - look at myself until he thinks I can handle it.

I do tend to have anxiety, so I am worried about my reaction tonight when I wake up.  I don't want to freak out too much.  I have tried to prep myself, but we'll see how well I do in real life.  I am not so much thinking appearance for this, more so I will wake up with a trach and not being able to close my mouth around some humongous tongue flap thing and I will just get overwhelmed and lose it.  I think it is a fair concern.

Hmm, I am going to try to go to the bathroom one more time before I get hooked up to the IV.  I ate a lot last night.  :). If I don't actually end this properly, it was because I came out and they started on me. In which case, see you later!

I'm back.  Here's my view right now from my holding room bed.  Fancy gown, sexy legs (will have either a tibia or thigh scar after this), hair net, and glasses case at the ready.  Fun times.

Ooh, so I have been collecting my hopitsl bracelets.  I have no idea why, but from my very first day at MD Anderson, I have kept my bracelet.  I have like over 20 of them.  What do we think I should do with them?  I wasn't sure if I wanted to make a keepsake so I could remember the people who were so wonderful and saved my life, or if I wanted to collect them all and burn them as a cathartic cancer sucks gesture.  Thoughts?  Today they gave me two, so double the fun to add to my collection!  

See how attractive I am?  Heehee.  It has been kinda fun to not care at all about what I look like.  I shower in like two seconds (except the hot water feels so good and it takes so long to wrap up my tube in plastic that I tend to just stand their and soak it in), and I have no hair to dry to brush or pretend to fix.  It is so nice!  Like, not having dripping hair for an hour after my shower is a game changer.  

Ooh, the assisting Doctor came in and went through everything with me again.  Then, the nurse checked my blood pressure, oxygen, heart rate, and temperature.  I am perfect.  Oh, except for the cancer parts.  They also took some blood, gave me compression socks (see above) and two more bracelets!!  I have never had them on my ankles; I feel very special.  4 bracelets at once, what's a gal to do with so much excitement in her life?

They said the surgery will take about 10.5 hours.  

Oop, another doctor came in to mark my arm and leg for plastic surgery.  She was nice.  Now I have marker on my neck, left forearm, and right leg.  

I feel like we are closing in on go time, but I must admit tying this nonsense has been very helpful at keeping me calm.  This surgery is super long and I hate that poor Brian has to sit out there all day just waiting.  At least I will be peacefully asleep and totally unaware.  He will be worried and anxious.  His younger brother, Rob, happens to be in Dallas visiting with his in-laws, so he is going to drive up and sit with Brian for a while today.  That is super nice of him.

Oop, nurse came back and warmed me anesthesia people are coming.  I should probably stop now.  I am feeling ok going into this.  I have the best doctors and the best husband taking care of me.  I am looking forward to the drugs that are on their way.  I'll post again soon once I can wrap my head around my crazy recovery.  Thanks for all the prayers and well wishes, and sorry to anyone who reads this - it was totally just my way to keeping sane this morning.  Here we go!


Thursday, October 13, 2016

Surgery Prep

Wow.

Brian and I left home on Tuesday night to get to Houston and prep for my surgery that is coming up on Monday.  It is strange to leave your kids for 3 weeks.  What do you even say to them?  The childcare chart Cheri and Mom made is 4 pages.  Insane.  I am going to miss their little faces so much.

That being said, they were being total monsters when we left, so that made it a little easier. :)

And, to be honest, I am so preoccupied and scared of this surgery that now we are here, I am doing ok with missing the kids.  I am mostly trying to not lose my mind thinking about what is about to happen to me.

We started off with all new scans and tests.  They needed to see how the chemotherapy ended up affecting the tumor now that my induction therapy is done.  AND - it was fantastic news!  My tumor size decreased by 50%.  Insane!  They all said it was the absolute best case scenario.  They showed us the actual CT scans today, and it was cool seeing the tumor pre and post treatment.

All that being said, though, the surgery is still being performed based on the original tumor site/size.  I want to be mad at that, since the whole point was to try to shrink this sucker, but really, I just want to be cured, and the best way to be cured is to get all of it and to get all of it, we are not going to take any chances.  I don't want to have to do this crap again, so let's do it right the first time.

Dr. Weber is my surgical oncologist, top 1% in the world, and apparently super famous.  He told me today he will be taking half of my tongue.  And my back teeth.  And possibly some jaw bone.  And the floor of my mouth.  And my lymph nodes.  Should be fun.  They will have a pathologist testing sites as they go to check millimeter by millimeter for more cancer and they will take more or less based on what they find.  There will always be microscopic cancer no one can see, and that is why I will do radiation about a month after surgery, but the goal is definitely to remove as much now as humanly possible.

Then, after Dr. Weber is done extracting everything, Dr. Mericli, my plastic surgeon, will take over in the operating room. His job will be to reconstruct everything that Dr. Weber took out.  And he won't fully know his game plan until he gets in there and sees what Dr. Weber had to actually do.  So, we are prepared for several scenarios.  I may only need a small portion of soft tissue and it can come from my forearm and I will have a new arm tongue and a skin graft on my arm.  Or, I may need more surface area than that and they will use my thigh, so I will have a chunk of thigh missing and a new thigh tongue in my mouth.  Or, if they end up having to take jaw bone, then they will use my lower leg and take bone from my tibia, so I will have tibia jaw and leg tongue and a boot on my leg.  All fun options.  Obviously, I am hoping they don't need to take bone, but I am good with anything that needs to happen as long as it removes the cancer successfully.

Recovery is going to suck no matter what.  I am going to have a huge flap in my mouth that may or may not resemble a tongue for a long time.  I will have a tracheotomy and a wound on my arm, thigh, or leg - depending.  I will have drains and be using my tube to eat exclusively for at least two weeks before I learn to swallow safely again.

The amount of paperwork and instruction sheets we have been given already is overwhelming, and it will be even more once we are actually in the hospital being taught how to do home care for all this stuff.  It is pretty overwhelming.  I am super glad right now that I already have my PEG tube and know how to use it.  One less thing to learn.  I remember when I got it and I was so overwhelmed with how to clean it and use it.  Haha.  Seems like child's play now.

I did find out, though, that I totally messed up my steroids.  I am not supposed to be taking them at all!  Oops!  They were supposed to be for 3 days after chemo, and I have been taking them every single day for like 2 months.  No wonder I am so puffy and crazy.  I felt SO stupid when the doctor figured it out.  I was complaining about my stomach distention and some chemo side effects and we eventually traced it to the roids.  In my defense, when I was released from the hospital back in August, they told me to take them.  So, I have been taking them.  No one told me to stop and I never ran out, so I thought I was being a good little patient and taking my meds.  Oh well!

Anyway, Brian and I are going to try to enjoy the next few days leading up to surgery.  Between the actual surgery and then the radiation to follow, I will probably never taste food properly again, so we are trying to eat up yummy foods now and basically say goodbye to my taste buds.  Which is funny, since I can barely taste anything now, but having 1/4 of my taste buds is better than having none, so I am going to enjoy what I can these next few days.  Send me the strength to have fun and not totally freak out as we lead up to this insanity!!

Sunday, October 9, 2016

I don't want to...

Sometimes I need to whine.

Brian and I leave on Tuesday evening to head to Houston for my surgery, which takes place the following Monday.  I have 6am appointments starting Wednesday in preparation for this huge surgery.  Like, for real, I currently have 9 different appointments/tests/scans/etc set up for the 3 days leading up to surgery.

I really, really, really don't want to go.

They have not yet given me the full rundown of the scope of my procedure.  This is intentional. They have told me very specifically not to look it up on the internet and to be careful of listening to other people's stories since this is so different for each individual person.  I understand and appreciate all of this, but it makes me even more nervous that it is cloaked in mystery.  I do know that I will lose at least 1/3 of my tongue, and a portion of the bottom floor of my mouth which could or could not also include parts of my jaw.  My tongue will be reconstructed using skin and muscle from my thigh.  I will wake up with a tracheotomy (so that I can speak not using my mouth) and my tube (already got it) for eating and drinking directly into my stomach.  Apparently my tongue will be so large that I will not be able to close my mouth around it until the swelling goes down.

I really, really, really, really, really, do not want to do this.

I will be in the hospital for about a week in recovery, then I need to be in Houston for another week or so to do physical therapy. Again, I am not totally sure what level they want/need me to be at to go home (will I be talking and have the tracheotomy removed?  will I be eating normally?) so again all the mystery.  This means, though that Brian and I will be gone for upwards of three weeks.  That is a really long time to be gone from home - and our children.  We will miss Halloween and all the various festivals and parties and traditions that lead up to it.  We will miss report cards and picture day.  We will miss the school pumpkin patch field trips.  We will not see our kids trick or treat this year, or carve pumpkins with them.

I really, really, really, am pissed off about this.

Fuck cancer.

Fuck it.

Fuck it to hell and back.

Damn it.

Ugh.

Fine if you want to put me through the ringer and make me feel like shit.  Sorry I never smoked or drank and was just randomly chosen for this horribleness.  I am sorry for whatever I did to make this happen to me, but stop taking it out on my kids.  Just stop.

We say the word "Houston" and the kids get this sad, dark look on their faces.  Violet gets panicky before we leave town and takes comfort in counting the days until we get back.  Telling her it would be at least 21 days this time was heartcrushing.  Jeremy sees the school counselor every Tuesday to talk about how he is dealing with all of this.  He has brought home library books about cancer so he can read more about it.  He seems to feel a bit better when he can quote and recite facts and was really happy to read that I do not have the most deadly cancer and that from his research, my chemo is working really good since my hair fell out.  Why does my 8 year old know so much about cancer?  He is 8.  I don't want him choosing cancer books from the school library.

Why do Brian and I have to miss a month of their lives - in addition to all the time we have already missed this year and will continue to miss (I literally have no idea how long radiation takes - days? months? no idea - the mystery continues!) as this fight rages on?  Why do my kids have to see me so pathetic?  Why does Violet come into my room in the morning and ask if today I will be able to get out of bed at all to play with her?

And my poor family.  They have not complained at all.  But come the freak on.  They have already covered the kids 7 different times.  This time is so long they have had to make a schedule and charts and a shared calendar.  I believe 5 different people will be spending the night at my (very dirty - I have totally given up housework) home over this time period.  I can't even count how many different people will be picking them up from school and taking them to my office to do their homework until a relative can get to them from their own jobs in Memphis.  The kindness and flexibility and generosity of these relatives - and good gracious the AMAZING people at my work - astound me daily.  They talk of no big deal and happy to help and least they can do - but I know better.  Those kids are monsters and it is a big freaking deal to wait in 2 car pick up lines for over an hour and pack lunches for persnickety eaters and make Violet brush her teeth with actual toothpaste and keep Jeremy on task when doing his homework.  I feel so embarrassed and sorry that we are in a position to need this kind of help.  Cheri is coordinating all of this from New York and has strategically not shown me the charts or lists.  I think I will freak out if I know how much trouble we are causing so many other people.

I really, really, really hate this.  Have I mentioned that?

Meanwhile, the bills continue to pour in.  Do you know that I pay Ole Miss $1200 a month to keep my insurance?  I get a paycheck of $0, but I pay them $1200.  It is a pretty fun deal.  Luckily, we still have the money given to us by so many wonderful friends and family members from our fundraising account, but if this continues much longer, I am seriously concerned.  Everything we spend (rent, our normal monthly bills, food, I just bought the kids some fall/winter clothes when I realized neither of them owned jeans that fit), is money given to us by someone else.  So depressing.

And I still feel like crap on the regular.  My official "chemo haze" has ended (thank God!), but my lasting side effects seem to be muscle fatigue in my legs, horrible tingling sensations in my feet (to the point that they feel like foreign objects all the time), and no taste buds in my mouth.  I can suffer through the taste issues (super depressing, though, to think I may never taste some of my favorite things again), but I do need to be able to walk and use my legs normally soon.  Please.  Pretty please?

Ok.  I have vented and whined and cussed and purged.  I do know how lucky I am to have good treatment, to have family and friends who will keep my kids, to have money so graciously donated to us.  I am not negating any of that. I just wish it was not necessary.  I just want it all to go away.  I just don't want to leave my children and watch them suffer through this at such young ages.  And the baby inside of me really does not want my mouth and tongue totally annihilated next week.  I am straight up terrified.

But, I have been so blessed so far, and I know I have literally the best team in the world working on me.  Everything will be ok.  Brian will be by my side and he makes everything safe and better in my world.  My kids will probably have way more fun with Aunt Megan, Aunt Dani, Emily, Uncle Joey, and Nona than they ever would with Mommy and Daddy.  It will work out in the end, just as it is supposed to.  I have faith in that.

And I have faith in me.  Even though I really, really, really don't want to...I will face this next step in my fight head on and with a positive attitude.  It will be hard, but we will be just fine.  I got this.

Sorry for the vent - I needed to get the toxins out.  Thanks for listening.

Thursday, October 6, 2016

I Survived Chemo!!!

On Thursday, September 29, Brian and I went in for my third round of chemo.  First we did blood work (per usual), then I had a follow-up with my chemotherapy oncologist, Dr. Kies.  He was very happy with the state of my tumor and brought in my head doctor and surgical oncologist, Dr. Weber to have a quick look.  They both agreed the tumor has shrunk, the surface area is smaller, and they approved my surgery date for October 17th.  They were very positive and complimentary of how everything was progressing so far.

That means this was my final chemo treatment!

I don't even have to go back for the booster - this is it!

I will be totally honest when I say that I have really hated chemo.  Obviously, it put me in the hospital for a week, I had to have a PEG tube inserted, and it made me a crazy insane bed ridden person for days and days after each round.  I mean, I guess no one likes chemo, but I have heard from several people that it wasn't bad for them or it was no big deal or even gave them energy.  I don't like those people.

I will say, though, I appreciate the chemo and what it has done for me.  My tumor has shrunk.  MY TUMOR HAS SHRUNK!  I no longer have a huge massive lump in my tongue, I don't spit up blood, and I can eat!  (Taste is another thing, but I'll take what I can get).  As much as I have hated my treatments (I have technically had 5 if you count all the boosters), I so much appreciate that it has worked in my case.  I know how incredibly lucky I am to be able to see progress, and I am not taking that for granted.  This hopefully means that that incredibly terrifying surgery I will be having soon will maybe be a bit smaller in scale and they won't have quite so much to cut and remove and rebuild.  

But, surgery fears later - I am celebrating!

So, September 29th, we were in Houston at MD Anderson, and my nurse for the treatment was Martha.  I have to say all the nurses and doctors and staff at this center are insanely awesome.  And Martha was fantastic!  My treatment took about 7 hours and it took them two tries to get my IV in (I have horrible veins) and so they ended up having to do it in my wrist of my right hand, which sucks, but I kept telling myself - last one!!

Brian brought me pizza and snacks and I watched some Netflix and read Harry Potter.  I had a nice room this time, too, which was good.  It is silly, but having the bigger room with the good beds really does make a difference.

And at the end, Martha took us to ring the bell.  

Apparently, this is an MD Anderson tradition for people on their last chemo treatments.  It is a celebration that we made it through this part of our fight.  For many people, this would be their ultimate finish line - the chemo could eradicate their cancer.  For me, it was my first rather than last step, but it was still huge and significant and we were sure as hell going to celebrate it.

Please don't judge - I know I look terrible these days.  I can't bring myself to care much and I surely don't dress up for 7 hour chemo treatment days.
Ringing the bell
Brian is seriously my rock
I 100% could not do this without him - he puts up with me even when I am straight up horrible to him
the bell
celebration selfie with Martha
I cannot believe that I am 1/3 of the way through this craziness - and despite how hard it has been, it has also been successful!  I am so lucky and blessed!  Crazy fear-based surgery posts are bound to come next, but I want to bask in the positivity of this step first.  I did it (thanks to my amazing family mostly), and now that the chemo haze is over (though my legs and feet are still tingling horribly), I am so proud of myself for making it and of them for helping and supporting me.  1/3 down!!  We got this!!

Thursday, September 29, 2016

Hair Today...Gone Tomorrow

I feel like I should write something about my hair.  To be honest,other people seem more upset by it than I do, but it is definitely a significant part of this whole cancer process.

This one day when I got hair done and it looked nice:

I was told that most people lose their hair due to chemotherapy, and that I should expect it.  I was also advised by various cancer survivors to just go ahead and cut it off since the actual act of losing it is emotionally upsetting, and it is yucky to have to clean up hair off your pillow each morning.

And it was.  In the midst of the crazy chemo yuckiness that I experienced, I had huge wads of hair falling out all over the place.  I am not particularly attached to my hair, as I never learned how to brush it or style it or do anything with it, but it was still sad to run my hand over my head and come away with gobs of hair.  And it was gross.

So, I invited my family over and my amazing sister-in-law, Megan, went to town with the clippers for me.  I still had a lot of hair at this point, but it was shedding so badly that I needed to do something.  This was very helpful, and while I was still shedding like crazy after this cut, it was more manageable in small pieces.  Megan was wonderful and it was nice having my mom, sister, brother, and family around to give me moral support while we chopped it off.


Then, when Brian and I got back to MD Anderson for my next treatment, we went to the free salon and had it cut even more and were given a free wig.  This cut felt better, as it was so close I don't really notice the shedding anymore.  I actually still to this day have a lot of hair, but the bald spots around my noggin are getting more and more pronounced each day.  Not sure if I will ever have the completely smooth bald head or not.  We'll see.

The wig is hilarious.  I have only worn it in public twice, I think.  It is really uncomfortable and HOT.  So much sweat up under that thing.  But, it does look decent and it is nice to have it as an option if I want to look or feel a bit more normal one day.

I still prefer the baseball hats (and thanks so much to Kathy Alspaugh for the awesome new hats!!) and have recently started embracing the scarf a bit more since baseball hats are a bit too casual for all events.  I much prefer comfort over style, so the wig I think will be for special events or at the children's request only.


The lack of hair does not bother me much - I think have too many other concerns to really care about my appearance - but it does feel super strange in the shower, and in the few instances when I have gone out in public bald, I feel like people are staring at me a lot.  Not so much in the hat or scarf, but when bald, I definitely get the weird stares.  I wear a little cotton sleeping cap thing at night and during the day when I am just hanging out at home, as it is really comfy.  But, I look crazy.

Jeremy has been sweet and tells me every day that I am beautiful.  He says I look like a cool army woman when I am bald.  Violet has been unimpressed, though she did enjoy playing with the wig.  Despite losing your hair being one of those quintessential "cancer" things, it has really been a non-issue for us, which is totally okay with me.

Still, I am super excited that Thursday is my LAST chemo treatment (should all go well...which it WILL), and I look forward to getting this hair growing again.  My face is entirely too round for such a short cut.  :)