Tis the Season

When I was a child, I never quite understood why grown ups didn't get into the holiday cheer.  It was the most magical time of the year, the time when I believed that anything could happen if I wished hard enough for it. I truly believed in Santa Claus well past a reasonable age... Because I believed that over Christmas, anything was possible. Why would I ever have given up on that hope?  I even got that 10 speed bike with a bow on it one year. The exact one I dreamed of.

In 3 years, I have become a wife and a mother of twin toddlers. If you read those ridiculous hashtags of literally millions of blog and Instagram mothers out there, they say #2UnderTheAgeOf2! Meh... eye roll. If you had asked me at the end of last year if I thought that that had made me an "adult," I would have told you no. Big deal, we just dealt with our hectic, but completely awesome life!

In the last 8 months since Whitey got diagnosed, I have become one of those adults.  A little stressed about finding the perfect gifts, decorating, logistics, etc. More shocking is that I even consider myself an ADULT. To anyone who knows me, it is probably hard for you to imagine this, either.  True, I am still the same quick tempered, impatient, sometimes foul mouthed girl (sorry mom and dad!) who thinks flatulence jokes are the BEST (because they are), and can win almost all beer chugging contests. That is still me, take it or leave it. I thank god everyday that Whitey took it, as we are polar opposites in those ways. Hey, opposites attract, right?

But ever since the end of April, the proverbial shit has hit the fan.  Adulthood has come flying at me like Miley Cyrus' wrecking ball.  To be clear, I think Miley is absolutely revolting, and I would do almost anything to run away from it (and her!)

In 2015, Whitey and I officially became grown ups. We have gotten dealt some of the crappiest hands... Cue drum roll with the pitiful violin playing in the background:

• Second Cancer diagnosis.
• Getting told that my husband needs a liver transplant.
• Chemotherapy.
• Feces throwing, mentally ill, HIV infected roommate for Whitey after Tace surgery.
• Countless visits to doctors.
• ER visits for both Whitey and Leila.
• Whitey having surgery on his mouth and surgery to extract moles that are inconclusive whether or not they could be cancerous now or in the future.
• Leila Bean admitted into the hospital for a week for a staph infection that infiltrated her bone. By far one of the worst experiences, having this tiny little girl not able to walk because she is in so much pain, crying (literally) 24/7, can't tell us what is wrong... And having to hold her down with 4 other grown ups, to keep her body still for an IV which they'd ultimately miss to get to her tiny veins... All while she screams "mommy!  I'm sorry. Please no hurt Yay-uh (Leila). I'm sorry...please.." Multiple times a day. Looking at me like I am punishing her for being so sick. It still makes me cry thinking about it.

Top it all off with major (negative) insurance changes, toddlers who have an affinity for getting buck naked with zero regard to the state of their full diapers, and the stomach flu over Thanksgiving? To be completely honest?  I am tired.  Exhausted mentally.  Is it okay to not be into the most wonderful time of the year?

You see, this time of the year, Whitey will definitely move up the donor list. Why?  To be blunt, there are more car/motorcycle accidents during the holidays, and therefore more organs become available. Actually, with every holiday, we knowingly look at each other and think, "this could be it!!"  I feel like a horrible person hoping that one family's final misfortune could be our ultimate gift.  It is like the saddest Gift of the Magi story ever. 

A thanksgiving turkey is awesome... Especially when it is fried to perfection... But a thanksgiving liver would be even better. I know, I know. It is morbid, sue me! But it is our reality.

It seems like everything in our life hinges upon the transplant. We have sadly missed and will miss weddings and celebrations of people we hold dear to our hearts. Our friends and family pause to give us their awesome news, in fear that they don't want to rub it in our faces (which by the way, please please please tell us!  We are social people, and LOVE to hear great news.  Your happiness fuels us!!) We cannot travel more than an hour away, and we jump when the phone rings and it is a number we do not recognize. Just in case. And when we do get "the call"... It could very likely be a false alarm. Yes, I have heard these false alarms can happen for a number of reasons:  someone else needs it more, it isn't a good quality liver, it isn't a good size, not a great match... You name it. We are ready to be called multiple times just to be let down. It is just the reality of this waiting process.

As I read back on what I just wrote, I realize more and more that yes. Adulthood is here. Whitey and I are definitely grown ups, with grown up issues to deal with.... And sometimes I wish I could just tell Santa that all I want for Christmas is for my husband to be healthy. Because he deserves it. But other times, I just wish that Santa could take away some of these "adult" issues, and just allow me to be a wife and mother again.  Because I felt like I was good at being those things, and this new adulthood is a completely new ball game.  One that I feel sometimes that I am the worst player on the field: dropping the ball, and completely missing the goal all together. 

But before you go and think that I am too filled with bahumbag to want to welcome
Christmas into our hearts this year... I still have hope. It comes everyday in little ways:  a Christmas card from our family and friends, the look on the faces of Eli and Leila when they saw the Christmas Tree for the first time. I mean seriously.  Look at those faces.  How can I not LOVE the holidays? You would think that they saw Rockefeller Center's Tree for the first time, instead of the twinkly lights only, tree in our kitchen (Yes.  The kitchen...which is usually off limits to them via baby gates. To minimize breakage of the ornaments!)

"Oh my goodness, daddy!  So Pretty!  I like it!" - Leila

"It's SANTA!  I KNOW HIM!!!"- Eli

When close my eyes, I remember that the holidays are supposed to be about love, hope, and family.  It is undeniable, that when Whitey, Leila, Eli, and I are huddled in our family hug and kisses every night before bed... We have all 3 of those in abundance.  I can actually feel it from my heart to my toes.

I am most thankful for these 3 people, and from them I have more than I can ever wish or ask for from Little Baby Jesus and Santa combined... Including the reindeer.  But just in case any of them are listening... A liver for Whitey would be awesome, too.

We love you all. We hope you had a happy thanksgiving, and will have an incredible Christmas and New Year. For all of you who still believe in the power of Christmas and Santa and all that... Put in a good one for the Whites... Because through all of it, if I search deep enough down in the pit of my heart, I still believe in Christmas miracles.

Xoxo,
Tessa

Besties in Christmas jammies!  But don't let them fool you.  2 Seconds later, they were pushing each other off the chair.  

Tessa loves Whitey - Photo credit http://www.jenniferwinder.com/

The naughtiest, cutest boy ever.  Photo credit:  http://www.jenniferwinder.com/

Swoon.  Please stay this age forever, my sassy little lady. Photo credit:  http://www.jenniferwinder.com/

Whitey's holiday party this past weekend

Finding our tree at the Merrifield Garden Center.  

11/21/2015 - Facts and Feelings

Backstory on the Post Subject:
I remember one day when Tessa came home from the office and was laughing and told me a story where she had been talking to her boss (one of her good friends at work) and he was demanding that she give him "Facts, not Feelings".  So in the words of Friends, I'll pivot on that idea...

Feelings:
Sometimes I think it's the waiting and uncertainty that gets to you.  If I were talking about the markets I'd say that uncertainty, and lack of definitive information about interest rates, is the reason we see choppiness in stocks.  People are generally impatient and when lacking information, can get spooked.  I think the lack of definitive timelines or transplant date is causing the same effect on Tessa and I.  Each us us is just a little more on the edge and we're both a little more chippy.  I think it's totally normal, but that doesn't make it easier.

My company was just acquired and they're making some changes to the healthcare pan (which means more out of pocket), so that's had me occupied more over the last week as I've been trying to determine what that might mean.  In addition, it looks like they might have changed their Short Term Disability policy in terms of how much they pay out while I'm on Short Term Disability.  That actually has larger implications than the insurance change as I'm predicating I'll be out for 3 months.  Of course, since I cannot know for sure if the transplant will be 2015 or 2016, I really don't know how to best choose the right plans.

Facts:
My MELD score was upgraded
Old MELD score: 25 (set on Aug 18th)
Current MELD score: 28 (set on Nov 18th)
Next MELD score: 31 (set on Feb 18th)

Today, I reached out to my Doc for some "market color" on the liver transplant market. Specifically I was trying to determine what the liklihood is that a transpant would be a 2015 thing vs a 2016 thing.  You cannot fault him for not knowing for sure, that's the squishiness that I've alluded to earlier.  Below is his response (note, names and e-mail addresses altered to protect his awesomeness. I'd also like to call out how fantastic he is at communicating both in and outside of the office.

-------------------------------------------------------------------

Awesome, Dr  <Doctor.Is.Awesome@gunet.georgetown.edu>

4:54 PM (12 hours ago)

to me 

Transplants have been busier recently but that's not always a predictor of what's to come. Timing is still unpredictable other than as your MELD rises the chances increase. However, before year end is still possible.
-------------------------------------------------------------------

It's only fitting that I leave you with a John Wayne quote:
Courage is being scared to death . . .
and saddling up anyway.
~John Wayne

10/16/2015 - MRI Results & Other Shenigans

Friday 10/16, was a big day that I was nervous about, 3 big appointments.

Medical Appointment #1, MRI with Contrast (5:30am)
5:30am?! - You might say, Matt, why the hell did you choose 5:30am for an appointment?!  Well I didn't want to be there that early.  I got a little heated with the scheduling assistant after they had canceled my appointment the week or so before on a Friday at 7pm leaving me with no way to work things out with them and insurance.  So I did what any person in my situation would do, leverage resources at my disposal.  I turned loose my awesome Transplant Coordinator on them.  It's like Georgetown is a fenced in property that I cannot get in.  It just so happens, I have a Pitt Bull on the other side of the fence and I can use this to get what I need sometimes.  In this case, I got the appointment on the day I wanted....but it was at the crack of dawn (i'm sure trying to stick it back to me but no bother....)

I had an MRI with Contrast to check to see how the two tumors were doing.  This was 6 weeks out from the last TACE procedure and it would be an indication of how the tumor twins responded to the chemo.  I never know the results right away as it requires someone other than the Tech to read it and post results in the computer system.


Medical Appointment #2, MELD Score Labwork (10:30am)
This is a pretty straight forward appointment with 5 or so vials of blood drawn at my local Quest Diagnostics facility.  The only note-worthy thing here is that they drug, alcohol, and peepee test me.  Always fun to see the other winners who have to pee into cups.  Mostly in my area, BMW salesmen are rotated through all the time.  Then, there's always that hugely pregnant woman doing the glucose test who looks totally miserable.

Most notable on this trip was that for the alcohol test blood draw, he wiped my arm with alcohol before the needle stick, drew the tube, and pulled the needle out.  He then looked at me....and said...hmmm...I don't think I should have done that.  So he and I agreed, and a second stick was needed without an alcohol wipe just to be sure.  I guess I never really thought about it, but I'll blow on on my arm the next time to make sure it's dry before the next Tech jabs me.

Again, the point of all of this was to satisfy the MELD score upgrade requirement and to keep me in good standing on the transplant list.


Medical Appointment #3, My Liver Doc (3:30pm)
Tessa came with me to this appointment.  It's kinda like a state of the Union talk only less applause and an infinitely shorter duration.  They ask me how I feel, if I'm eating, if I'm exercising, etc.  Usually the Doc and PAC come in and I joke a bit, then talk serious.  Lucky for us the test results were back from the MRI that morning. (Yeah for Medical Electronic Records!!!).  I've highlighted the key points in yellow below. Basically, Tiny Tim (the smaller of the two) is likely done-zo.  The larger of the two, is still basically the same shrunk in one direction, larger in another direction, call it a wash.  But, this means no more TACE is needed and they'll re-evaluate in January sometime.

What does this all Mean?

I still have cancer, but it's not spreading.  I'll still need a transplant and I'm moving up slowly with more and more MELD points on the wait list for a new liver.  Until then...it's waiting, waiting, waiting, waiting....

9/24/2015 - Where are we now? An update from Management

It's been a while since I've added any sort of post and I owe it to you all to keep you up to date.

Summary:
I'm still here, still enjoying family life, and still playing soccer (and yes, still working).  I'm in a holding pattern until my next set of tests to see what the tumor twins are up to in my liver.

Matt's Stats:
Blood Type: A+
Current MELD score: 25 (set on Aug 18th)
Next MELD score: 28 (set on Nov 18th)

Georgetown Hospital Update:
Georgetown had a Labor Day transplant for an O blood type individual.  Currently, for my A+ blood type, my transplant coordinator communicated that at a MELD of 24, is where Georgetown sees folks see offers come in.  Note that this is dependent of the quality of the livers.

Having said that, the following are some dates where I might know more:

Key Dates:
Friday October 2nd - The day I got engaged to Tessa!
Monday October 5th - Routine Lab tests (prior to MRI)
Monday October 5th - 11am - Flu Shot through work (recommended by my transplant coordinator)
Monday October 5th - 1pm - Pulmonologist visit (been having some trouble breathing but I think it's just related to Ragweed season)
Thursday October 8th - 8am - Teeth cleaning (worried that once the transplant goes down, I might be out for a while and not able to get them cleaned.)

Sunday October 11th - 8am - MRI with and without Contrast.  This is the big one.  Have the tumors spread, shrunk, stayed the same?

Friday October 30th - Chest CT to make sure there is no funny business in my lungs.


November 18th, MELD upgrade from 25 to 28?

Understanding the MELD breakdown:

In interpreting the MELD Score in hospitalized patients, the 3 month mortality is:

• 40 or more — 71.3% mortality
• 30–39 — 52.6% mortality
• 20–29 — 19.6% mortality
• 10–19 — 6.0% mortality
• <9 — 1.9% mortality

9/1/2015 - TACE Results In!

I'll be honest (actually I'm always honest but with a heavy side of sarcasm), I was smiling today.

I know there is still a very long road ahead in terms of waiting for transplant, false alarms when I go in for a liver if it's not suitable, the surgery, and the recovery.  None of these things will be easy on me, or the family. (The latter I'm more concerned with because I know I've done this...i'm a living breathing proof of concept).

I can say however, that I got good news today.  Great news really.  Sunday 8/30/2015 at 8:30am, I had my MRI with and without contrast and I was dying to know the results (ok, that's a really bad dad joke).

I called my Gastroenterologist (liver doc) today and asked if he had the results from the latest MRI.  His front desk told me that they did not have the results and that the radiologist will still need to read them before sending them over.  So I did what any impatient kid would do.  I was polite, hung up the phone, and moved along in my Medical Phone Tree to the Interventional Radiologist's office (will refer to them as IR from now on).

Here is where the "golden rule" factor comes into play.  I always try to break people down, make them smile, Once, Tessa and I took the twins into the office and Leila wouldn't stop hugging one of the nurses.  We had made an impression and I was no longer a patient, but was now a name with a face.  When I called today, they knew me right away and took down a note.  The IR was performing procedures all day they said, it might be tomorrow before he could get back to me.

You know when you really love your job (hopefully you all have experienced it) or when you're really into something, it's your passion.  Well, that's my IR.  He loves being the best at what he does and has an impeccable bedside manner (probably a really awesome manor too!).  He finished up his cases today, must have immediately reviewed the MRI.

The MRI itself can locate nodules or tumors but the contrast will flow into the tumor if the tumor is alive and growing (this is all my non-doc speak).  So ideally, what you're looking for is a tumor that's just a void.  A dark void that doesn't pass any contrast.  And if not a complete void and it's still passing contrast (still vascular) then the smaller the better.

Remember that I have two tumors. One is 22+ mm and the other was 8mm according to the first MRIs.

Following the second TACE procedure the second MRI on Sunday showed:
Tumor One (Yet to be named): Resulted in 22mm tumor/legion showing completely dead, no contrast.
Tumor Two (Yet to be named): Was previously showing signs of necrosis and at 8mm.  This tumor is now down to 6mm and is still "enhanced or enhancing"

Wow.....I was so happy to hear that news.  The big guy was whipped up on....go Dr Alexander Kim (my IR)!.  Now I call BS on tumor #2.  It was the one that looked to be cooperating before but now isn't sure it wants to place nice.  It is however smaller, which is good. (I'm taking tumor name ideas, winner gets a pickled tumor in a mason jar)

So for now, no more TACE / Chemo.  We'll schedule a follow-up MRI in 6 weeks (mid Oct?) and we'll re-evaluate then.  I'm totally on-board with that.  Gives me time to build up energy levels, do some projects around the house, and fight with insurance on all the things they say that they don't want to cover (more on that later).

For tonight, I'm good with the results.  It's a great win.  I'm not getting super happy, because in the back of my mind, I still have the transplant... BUT a win is a win!  Tonight...I go to bed smiling and if you see me tomorrow, it's not coffee, I'm high on life.

Your Medical Carrie Bradshaw,
Whitey

8/26/2015 - Medical Expenses Update

Total Claim Amount: $191,343.95

Paid by plan: $34,220.93

Matt's Cost: $1,635

8/1/2015 - Fat crotch and the Mynx

Well if that title doesn't have simultaneously disgusted and struck with intrigue, then I have failed you as a blogger.  Read on, but if you are about to eat lunch or easily get an upset stomach, save this post for later or skip it altogether.

I was recovering well from my 7/21 TACE procedure and had even been out to play an hour and a half of soccer on it with no issues.  I had a college friend visit on Friday 7/31 with his wife and three daughters on their way to the beach in the Outer Banks in NC.  On our way to dinner I complained a little to Tessa that crotch hurt a little where the incision site was but didn't think twice about it.  We had a great pizza dinner Friday, put the kids down, and sat and talked until just after midnight.

It had been a long day and I wanted to hop into the shower before bed (is a midnight shower before bed weird?).  As soon as I dropped my shorts to head into the shower, I looked down and realized I was in trouble.  A giant bubble had formed under my skin somewhere between the size of a golf ball and baseball.  The site was red and itchy.  Anyone who has gotten an infection knows this is a sure sign.

I called the message line for the on-call interventional radiologist who promptly returned the call.  Without hesitation she told me to come in to the Georgetown ER.  We politely informed my college buddy and his wife, called my parents to spend the night with the kids, and we took off just before 1am in the cancer car headed to Georgetown ER.

By 1am, we were in the thick of the ER with everyone else waiting.  I'm sure I said it before and I'll say it again, but your health is the great equalizer.  The wait room had:

• people who were complete divas demanding attention
• it had a crazy old lady who would try to start up a conversation and comment on everyone entering the waitroom (later to find out she was worried she had a mosquito in her ear but really her ears were just full of earwax)
• it had drunks
• it had druggies
• it had young babies

Lucky for me, the IR on-call had phoned ahead and told the ER to expect me.  This did help to get me into an exam room but didn't do much to help me get out before 8am.

Once in the exam room, they used a permanent marker to circle the swelling (to ensure it did not spread more while I was waiting).  They started up a line and drew some blood.  The big concern was that the artery where the infection was near could have meant it would infect my heart. (I'd had pericarditis once, and I really was hoping I wouldn't get it again, painful).  I eventually made my way down to get a 4am ultrasound to ensure that i didn't have a pseudoaneurysm (don't worry, I had to look it up too).

Lucky for me, tests came back negative and they put me on a 10 day antibiotic treatment (3 pills, every 8 hours).  The antibiotics are supposed to be ok to take given my single kidney and cirrhotic liver.

Story over, right?  Wrong....

 I came home to crash, and woke up 3 hours later and decided to check my bandage.  It looked like a maggot was trying to escape out of my incision site.  I knew it wasn't anything alive, but it looked nasty!  Now it being Saturday afternoon, I again called the on-call IR specialist.  They told me to head in and I could actually catch my surgeon at 2:45pm, so Tessa and I head out to the cancer car for our return trip.

Upon arrival, the doc put on gloves, and pulled this little guy out of the incision site.  It looks nasty however it's actually the Mynx closure device and my body was rejecting it.  After it was pulled out, he compressed the swollen site and hand drained fluid, puss, and other stuff my body didn't want.

I didn't lose the golf ball / baseball immediately but after 3 days of being on antibiotics and the fluids that were drained, I'm well on my way to becoming myself again.  Thank goodness.

Hope you all had a better weekend that we did.

Whitey & Tess