Monday, December 21, 2015

12/16/2015 - Transplant Market Update

I am always asking where I stand on the transplant list and it's hard for doctors to tell me because it's squishy depending on bloodtype, etc.  On Wednesday Dec 16th, Georgetown Hospital did 3 liver transplants.  I was able to get some information:

Adult - Blood Type B
Adult - Blood Type O
Pediatric - Blood Type O

I also heard through the rumor mill that Eddie Island a transplant surgeon who I met with for my initial transplant meeting, has resigned.  I don't know the details or where he will be going but a little saddened to hear.  I know Dr Tom Fishbeine is still there and he's my #1 choice but I can't control
who I get.

The other surgeons are Dr. Matsumoto, Dr. Girlanda, Dr. Desai, Dr. Hawksworth, and Dr. Kroemer.  I was told that they usually they will come in and speak with me prior to the surgery, so I will have a brief chance to meet the surgeon prior to the operation.

Monday, December 14, 2015

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.  

Thursday, December 3, 2015

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

Saturday, November 21, 2015

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....

Thursday, September 24, 2015

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

Monday, August 31, 2015

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

Wednesday, August 26, 2015

8/26/2015 - Medical Expenses Update


Total Claim Amount: $191,343.95
Paid by plan: $34,220.93
Matt's Cost: $1,635


Sunday, August 2, 2015

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

Friday, July 24, 2015

7/24/2015 - Technology Used: Sure Fire Catheter & Mynx

I found out the the new technology that was used on me to prevent the chemo from spilling back into the artery (and thus losing the "full dose") was provided by a company called SureFire.  The product looks pretty cool.  I like to think of this as the Blowout Preventer which prevents chemo from spilling out into the ocean of my body.  (but this works, unlike the one on the Deep Water Horizon)


Again in this procedure, similar to the first, the Mynx closure system was used.  The product injects a sealant near the puncture site that shoots a gummy blob around the artery but below the skin to prevent any artery leakage.  It then breaks down over the next 30 days, leaving nothing behind (in theory, read my next blog post).

Wednesday, July 22, 2015

7/21/2015 - Procedure and Discharge

Arrival on the 20th with Tessa and my Mom to Georgetown admissions at 6:30am.  We all piled into the Cancer Car and took HOV on the way down with no traffic.

I'm not sure if I've explained the cancer car concept or not.  Since Gtown is starved for space (think no real private rooms, car valet required unless you get there early so they can rotate cars around when the double park them), I've always wanted to take the smaller of our two cars to navigate the parking lots so I won't be upset if we end up with scratches etc.  The 2003 Honda CRV fit this bill perfectly.  I have since referred to it as the Cancer car.  I really like this idea because it will allow me to divest of this car when it is all said and done and I'll no longer have negative connotations associated with the car.  Good in theory, we'll see how this works. But I digress...

As soon as I'm checked in, assigned my hospital wristband (with a QR code) and my allergy wristband, I head to interventional radiology.  "Ground floor of the CCC" for my avid readers.

It could not have been more than 10 minutes when they call me back.  Strip down, nothing on but the gown, I was told.  I asked if I could put a second gown on and the Tech laughed and told me she did the laundry and didn't want the extra work.  I cracked a smile as I was being beaten at my own game.  Now the last TACE, I had a gown in front  back but didn't fight much because there is no modesty in this procedure and pretty much everyone sees you naked over the course of your stay.  Doctors, nurses, students in training everyone wants to check out (and feel) the incision site.  In case you haven't picked up on the location of your artery for this procedure is right in your groin.

Here is where I'm sure questions are going through your head.  

1) Are you just laying there with your package pretty much exposed on the operating table?
2) Do they prep the site? (think bikini wax ladies)
3) Do they do something to prevent you from peeing during the procedure?
4) Are you awake?

The answers to all of these questions is of course yes.  Skip this next section if you're not in to humor or not in need of a good laugh.

The initial TACE I was not ready for any of the above.  I ended up with a condom catheter on and a Brazilian wax. But this time it would be different, I was prepared and armed knowing I was one step ahead of them...or so I thought.

Despite my best job at the self administered Brazilian, they again had to reduce even further.  Always awkward and I was hoping to have to avoid it (no such luck).  Let's just say I'm now ready to hit the beach once the incision site heals!

The condom catheter is just that with a twist, the whole interior of the condom is chock full or adhesive.  What luck!  I'll let you imagine (or not) what a show removing this is with adhesive remover once you're able to move around and use the bathroom on your own.

But....back to the procedure. As I drifted in an out like in a dream, they asked that I take breaths so that they can thread the artery with the catheder that will administer the chemo.  I was awake for this but it's really not that painful with the drugs they provide.  Before I knew it, the 2 hour procedure was over and I was being wheels to 7 West.  (The Penthouse of the hospital that they call the PACU).





For those who read my previous posts know that I had a crappy (pun intended) deal with my shared room.  The PACU was divided up into isolated bays and the nurse to patient ratio was very high.  Also, as things wind down for the day, they move most patients into shared rooms but stayed in PACU, meaning that there were maybe only 4 people for 20 bays who would be staying overnight.  This was like staying at at a nice Marriott as opposed to the Motel 6.  Somebody was looking out for me and I want to thank that/those person/persons.

The biggest difference that I notice between this procedure and the last (and they're virtually identical) is that I've had greater stomach / abdomen pains with this go-round as opposed to last.  I'd like to think this is because this means the chemo is working more, but that's just my thought based on zero medical knowledge.  I've also had some slight nose-bleeds (very minor) as my platelet count is somewhat low (88k).  I'm not sure if that is related to my existing poor liver function or chemo related.

Two days later, I sit here typing hoping that soon, I'll be able to have my follow-up tests and that they'll show signs of the tumor shrinking.

Don't forget that my good friend in New York is raising funds for the Leukemia / Lymphoma society and honoring me by dedicating her marathon run to me (#WineglassForWhitey).

Best,
Matt

Sunday, July 19, 2015

7/19/2015 - Let's get ready to ruuuuumble.....

So here we are, the night before my next procedure.  I'm not to eat anything after midnight so I managed to have a burrito this evening to make sure I don't stave for calories over the next couple of days.  Actually, you'd be surprised, the Georgetown hospital has french toast that's made from croissants.  It's not in the standard menu but the cafeteria where the doctors eat has it, and Tessa has been known to bring it to me.

I'll check in at 6:30am tomorrow, "ground floor of the CCC".  People at the hospital love to sling around names thinking that it might make being in a hospital somehow more cool (which it does not).  I'll get tagged with my wrist band, and head down to interventional radiology to get my IV set and strip down to those highly trendy hospital gowns and clown socks that always fit up to size 12 feet (I'm size 13.5 so they look even more goofy).  Pray for no wind since they do not let me wear underwear.  Last time, I came out of the changing room swinging my underwear around and yelled out, "let's get this party started".  I definitely got some laughs.

If there is one thing that I've learned from dealing with people; nurses, doctors, the mail man, or the dreaded Verizon phone rep, it's that you can win people over with humor and make their day better.  When you do, they'll do whatever they can to smile with you or dish the sass right back.  That always makes me happy and takes a little of the uneasiness out of the discussion / situation.  I challenge you to try to crack someone this week who you think you can't break down.

(Just 36 minutes to snack or grab a drink for anyone counting)

I've been taking some time to grab go-pro videos here and there when we head in to the hospital or doctors office.  Not the most entertaining footage but I'll work on trying to post something if I can.

Here is wishing you all good health and a happy start to the work-week.
~Whitey

Tuesday, July 14, 2015

3 Years to be Grateful!




Three years ago today, Whitey and I were in Littleton, Colorado.  The Manor House was getting set up, we were getting all gussied up, our family and friends were starting to arrive. Looking down the aisle at my gorgeous boyfriend, I felt like my heart was going to explode. I wanted to run (not walk!) down that aisle to him, before he changed his mind!  We partied all night, got toasted by best friends and family, cried tears of happiness, danced, kissed, and celebrated with most of our closest family and friends.  I never thought I would be as happy and grateful as I was on July 14, 2012.  I was wrong.

By our second anniversary, incredibly we had topped the joy we felt at our wedding!  Despite giving birth almost 10 weeks early, Eli and Leila thrived in their 2 month stay in the NICU. To top it off, they were two of the most healthy, and most adorable babies we had ever set our eyes and hearts on (in my humble and completely unbiased opinion!)  I was a stay at home mom, which was a role that I never thought I would love.  Yet, I did, and I found myself pinching myself daily.  I was able to spend my days witnessing them grow, thrive, and watching them hit their milestones early!  I couldn't believe my luck!  My life seemed perfect.

Our first family picture!

Going into our 3rd year of marriage, we prepared ourselves for another year, slaying life ;)  New hepatitis C drugs had surfaced, and my dad pointed Whitey to a new practice to speak about treatment.  We were hopeful that this was to be the year of health, and that these new drugs were the answer to our prayers.  I prayed that Whitey would be cured, so we could live our life to its fullest, and that he would be around to get old and gray with me.  So he could be there to witness our own children getting married as well!

On July 24, 2014 at10:50AM, Whitey began Olysio and Sovaldi to treat his hepatitis C. On October 30, 2014 at 7:26AM he had to undergo his last of 3 throat banding surgeries as a result of his disease. After we rang in 2015, we got the news that we had been praying for.  Whitey had zero viral load!  It was a miracle, and he had officially kicked hepatitis' gnarly ass!  I was on cloud 9.


Third banding surgery, and the start of Olysio and Sovaldi!


That euphoric feeling lasted all of 4 months.  Then things drastically changed.  

On April 26, 2015 Whitey asked me to join him getting an MRI.  It was a Sunday night, which I thought was a little weird, but he just said that was the appointment he was able to get.  I rolled with it, thinking it was routine. Sadly, hospitals were no new thing to us.  There was also a surprise!  That night, after his MRI, we were able to go on a date, just the two of us!!!  With the kids taking up 99% of our time, those dates are few and far between.  I was siked!  He got the MRI, and we jetted off on our date.  We got a few pounds of crawfish at Chasin Tails.  Delicious!

April 27, 2015 was the day our lives forever changed.  I knew something was up.  It was a Monday morning, and Whitey stayed home from work, awaiting the results.  He seemed quiet and nervous.  A good friend of ours works at Georgetown hospital, and had gotten an early read on the results.  They weren't good.

Whitey told me calmly and quietly that the previous night's MRI was to get a better read on a tumor in his liver.  Except it wasn't only 1 tumor... it was 2.  And they believed it was cancerous. 

Cancer.  It couldn't be fucking cancer.  Look at him!  He LOOKS so happy, and he seems so healthy!  I mean, the man still plays soccer at least twice a week.  People with cancer are supposed to look sick, so they were wrong.  Hell, he was more healthy than ME!  Or so I thought. 

I asked him how long he had known about this.  "Since last Thursday.  I just didn't want to say anything before I was sure.  I didn't want to worry you, babe." he said.  Here I was, all excited about our date, and he had been carrying this news in his heart for days.  It was the worst news probably anyone could hear, and he didn't want to upset me.  Immediately, I crumpled down to the floor and started sobbing.  Hyperventilating.  Shaking.  And there my beautiful husband was.  Hugging me, telling me that he loved me, and that things were going to be okay.  That is how unselfish he is... and how selfishly I reacted.  He was hurting, yet he was comforting me.  

That is the kind of man that I married.  

The next few weeks and months were difficult to take.  The bad news kept coming to us like a freaking tsunami:

  1. Yes, it is cancer.  My husband has cancer.... again.  It was a result of receiving hepatitis C tainted blood during the 7 blood transfusions that saved Whitey's life battling kidney cancer at age 7.  (Re-read this point, and think of Whitey.  I guarantee that it will hurt your soul.) 
  2. Yes, he had beaten the disease earlier that year... but his liver is too far scarred from cirrhosis to regenerate.
  3. No, it can't be cured by chemotherapy... although he will have to endure it, to keep the tumors small enough.  
  4. Yes, he has end of life liver disease.  
  5. Yes, he will need a liver transplant to save his life. 

The bad news waves kept on hitting us over and over again.  And you know what happened?  We got knocked down on our asses.  Hard.  So what?  Just like in that stupid ChumbaWumba song in the 1990s, we got back up, brushed ourselves off, and keep fighting. Most importantly, we keep fighting as we started 3 years ago... together.  We love our kids fiercely. We love each other just as hard.  Everyday.  And when it seems like we can't keep fighting, we are surrounded by the BEST family and friends.  Just like we were on our wedding day.

He still brings me flowers.  He still kisses me first as soon as he walks in the door.  He still puts me first.  He always thanks me for taking care of our babies.  And getting those dates in?  We treat every appointment or hospital visit like a date day.  We always make time to get breakfast, lunch, coffee, dinner, or dessert in.  Just the two of us! :) And when we walk into and out of the hospital, he still waits for me with his arm out, just to hold my hand.  

As I look back 3 years ago exactly, I am still flooded with the same feelings as I felt saying my vows.  Completely grateful.  100% more in love, if that is even possible.  Year 4 is going to be incredible.  It will be the year that Whitey finally gets healthy, one that gives him the chance to walk Leila Bean down that aisle to her prince one day (...or princess.  Who cares?!  Yay SCOTUS!) Happy anniversary, Loveface!  Cheers to our perfectly imperfect life!  While I know that it will be an immeasurably heart wrenching time, I vow to always love you, above all others.  Forever and always.  In sickness and in health.

2015 Kentucky Derby, Churchill Downs.  A week after cancer diagnosis.

May 2015, OBX.  Pete and Penny's wedding
July 4, 2015.  Long Beach Island



Monday, July 13, 2015

07/13/2015 -TACE consulation debrief & Getting My Own Hashtag

Friday was a perfect day weather wise with lots of sunshine, which was awesome.  I had some stuff for work that I needed to get done but I know I could work on later in the weekend.  Tessa and I were able to take the kids to the playground in the morning, before my Doctors appointment at Georgetown. (Maybe she'll post some pics?).

Both our sets of parents are out of town now (with Tessa's in the Philippines and my parents at an Adult summer camp hosted by Chautauqua Institution).  Given that, we needed to take the kids with us to the hospital as I really couldn't ask Tessa not to attend with me (She's been great at asking questions and remembering all the things that I do not).  We went to the interventional radiologist's office.  He's the guy who navigates through my groin artery (while I'm awake but drugged) and asks that I take a breath in or out so he can slip the artery catheter up and up and closer to the liver tumor. (Next scheduled on the 20th)

He reviewed the same set of MRI pictures that my Hepatologist reviewed.  Except, he explained them a little further.  The smaller tumor showed signs of necrosis!  What's that you ask?  We're kicking the little tumor's booty.

The larger tumor is still being stubborn.  So on the 20th of July when my next surgery (TACE) is scheduled, they'll go in and do it all over again.  Same chemo and same dossage but this time, they'll add the element of a new catheter gadget.

NERD ALERT!  Did you all ever read about the Deep Water Horizon oil spill in the Gulf?  It could have been prevented if the Blowout Preventer hadn't failed.  This new catheter gadget acts as a blowout preventer.  It will fully block the artery so that when they inject the localized chemo into the area with the tumors in my liver, there isn't any chemo "blowback" that comes down the catheter.  The doc said it might be more painful for me, but they did a good job of drugging me up the last time, so we'll see.

Until I can report back more, i'm off.  Be sure to keep your eyes open for the next post:
#WineGlassForWhitey
http://pages.teamintraining.org/nyc/yourway16/WineglassForWhitey

Monday, July 6, 2015

07/06/2015 - Dates Set for TACE

The last thing that I did right before the long 4th of July weekend, was set dates on my TACE procedure #2 and the pre-meet on the TACE procedure to get a more detailed walk through of what worked and what didn't work with the first TACE.

The pre-meet for TACE#2 is Friday 7/10 and the actual procedure is on July 20th (Monday), at 8am.  I'll be in the hospital likely Monday / Tuesday and likely discharged if all goes well late Tuesday.  Wed-Fri I'll be at home recovering.

Friday, June 26, 2015

06/26/2015 - MRI, CT, and Follow-up (Another TACE needed)

Hello Family!

Matt had another full day of follow up appointments today.  Thank you to Nana, Dad, and Mom for watching the kids!

We went to Georgetown early this morning as Whitey was scheduled for an MRI and CT scan.  We also had an appointment with his transplant Hepatologist this afternoon.

Good news:

1.  There are no new tumors in Whitey's liver. Yay!

2.  The 2 tumors are not bigger in size.  Yay!

3.  The smaller tumor *may* have gotten a little bit smaller in size after the TACE (chemo) procedure.  If so, it is only a teeny weeny bit smaller. The small tumor also used to have a rim around it, which signified that it was indeed a live tumor, and an artery was still feeding into it.  This rim is now no longer there, so the chemo definitely worked on it!  

4.  His CT scan of his lungs is still the same.  The same small nodules are there, but they still don't seem to be as concerned.  

Not so great news:

1.  His spleen is still enlarged.

2.  His platelets are still super low.

3.  The larger tumor is still being problematic.  The last TACE (chemo) procedure, it was not as successful.  The MRI still showed the rim around it, meaning that an artery is still feeding into the tumor, and it has not shrunk in size.  This could be for 2 reasons:  1.)  Another artery is feeding into it, keeping the tumor alive.   or 2.) There could be another lesion (tumor) growing on top of it.  Neither of these outcomes are great.

What's next?:

Whitey is unfortunately going to have to go in for another TACE procedure, and another round of chemo.  To review, this surgical procedure involves opening an artery in his leg, going up with a scope/camera to find the tumor(s), injecting it with a high dosage of chemo, and then plugging up the artery to ensure that the chemo stays in the tumor, and that the artery does not keep feeding into it.  

As you know, the last TACE procedure wasn't Whitey's favorite procedure.  His roommate situation was a DISASTER, as the roommate threw feces all over their shared room and bathroom.  Foul.  The next procedure will probably be the same, with an overnight stay... but hopefully not a horrible roommate.

We are aiming for the TACE/chemo to occur after we come back from July 4th holiday with friends at the beach in Long Beach Island!  We will firm up the date next week. The last time this occurred, we were gone from early morning Friday, and he was released Saturday afternoon. 

Love,
Tess

Monday, May 18, 2015

05/18/2015 - MELD Score Listing - Official Letter

Got my official MELD score letter today and was listed with UNOS.  As you can see my initial listing is a score of 22.  High 20s is when I was told people are currently getting transplants.



Wednesday, May 13, 2015

05/13/2015 - Pre TACE meeting

Hello family!

Yesterday's appointments to Georgetown were very reassuring!  Matt saw many different people, and his spirits were high. Mainly because we stopped off at the Italian Store for hoagies and rations before we went. (Last all day visit, we had no food. And if you know us... Hungry and stressed is not a good combination!)

Here are the highlights:

1.  First visit was with Dr. Alexander Kim. He is a vascular and interventional radiologist and his nurse practitioner Michelle Jones.  He will be the doctor administering Whitey with his chemo this Friday, May 15 at 8:00am.

2.  The procedure is called Chemo embolization, or TACE.  Dr. Kim will go in through an artery in Matt's groin, cut off the blood supply to the blood vessel that feeds into the tumor in his liver. They will then inject it with a high dose of localized chemo. This will hopefully stop the growth of the tumor. He will be awake during this procedure, but sedated.

3. Why would they do this TACE procedure rather than just remove the tumor?  First, the cirrhosis is not reversible, so Whitey needs a new liver. TACE is preferable for the following reasons:

•  if there are too many tumors (greater than or equal to 3) OR if he tumor is too big, Matt will be taken off the donor list.
•  if they remove the tumor, Whitey will be taken off the list.
•  in a nutshell, they want there to be tumors, (but not many and small ones) to get a transplant.

4.  Good news:  the chemo is called doxorubicin, and hopefully will only be done once. Fingers crossed. Side effects include fever, nausea, stomach pain. Most patients are asymptomatic.

5.  Whitey will be there overnight. The procedure will take 2 hours. And he will be laid down flat for 4 hours. He will be released around midday the next day.  I will be with him to keep him company and make sure everything is ok. Myrna will be here Thursday night to Friday afternoon. Linda and Mo will be here Friday afternoon and stay to Saturday to watch the kids (thank you guys so much!!!).

6.  They did a chest CT to make sure no cancer had spread to his lungs. Results not in yet. If all clear, one step closer to transplant.

7.  They did an echocardiogram with bubble study. This ensures that his heart is healthy enough for transplant. The bubble study was cool. They agitated saline between 2 vials. Then they injected through the IV, and we were able to see that the bubbles in the saline only went through one half of his heart, while doing the echocardiogram. (This is a good thing).  They also did an EKG.

Today we wait. Again. And wait for the results. Side note? Matt is really being so positive.  It cannot be easy for him to be poked and prodded, etc.  But, he still manages to be kind, polite, and make the people laugh. Love him.

Love you guys!
Tessa