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,

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