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

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).

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

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