Monday, March 21, 2016

3/21/2016 - Post Birthday Check in

Friends, Romans, countrymen / women - lend me your ears....

I thought that was a cheeky opening, right?  No updates from me in some time, my apologies.  Things have been as busy as you would expect them to be with work / kids / general life.

On the work front, my company Primatics Financial was acquired, the tail end of December, by SS&C. I've been working long hours on one particular client often taking work home with me and putting in time on the weekends too. The founders of our company are all in the process of exiting and cashing out, and moving on to find something else.  There is sure to be some elbowing as the void gets filled and there has been some additional fallout as well.  I'm just trying to keep my concentration on my client and trying to prove my worth but stay out of the fray.

Leila and Eli are now 2.5 years old, and continue to be a handful.  They're both talking non-stop, love pushing back and telling us "no daddy" when they disagree with something. Tess has been working on getting them potty trained and I help when I can when I'm home.  For the most part, they've been doing exceptionally well with minimal accidents.  I think if Eli was on his own, he would likely be slower to adopt however he's pressured into it by Leila.  Bribing them with M&M's helps too (1 for a #1 and 2 for a #2).  Being our children, they have learned to game the system (a little bit here, a little 10 minutes later) just to optimize delicious chocolate treats.  Touche twins... touche.

Now to the dark horse.  Cancer, that lovely little friend I would love to get rid of....

I didn't mention it in a prior post because I thought it's really no big deal but then I realize that I want this blog to be inclusive of everything and not really try to shelter new (good or bad) so everyone knows what's going on.  I had three asymmetric moles cut out 2015Q4 at different times.  One day, sitting at work, I got a call from my dermatologist who told me that one of the moles removed was basel cell carcinoma or 'BCC'.  (skin cancer).  I really don't know what that meant, but I knew it was cancer.  At this point on the phone, I just started laughing.  "Are you ok Mr White?" asked the dermatologist.

You just can't make this stuff up.  I told her you just have to laugh at it and then politely ended the phone conversation.  I sat there, stared at my monitors, and thought how I would break this to Tessa.  I figured, I would google it, to find out how serious it is, and then would tell Tessa that night when I got home in person.  Google and a couple of phone calls to people in the medical field and I found it is skin cancer....but it's like a "cancer light".

As I said, I just wanted to mention it to get it all out there.  I just will have to be careful with sun exposure and really watch them post transplant.

To be completely honest, we thought that the surgery would have been completed by now.  But alas, as in life, there are always roadblocks.  At the beginning of the year, we were also given some news about the liver transplant program at Georgetown.  Each program in the United States must report certain statistics post transplant to UNOS (United Network for Organ Sharing.)  Unfortunately, after taking on some "complex cases that had unfavorable outcomes," Georgetown's program had hit their own roadblocks at the 6 month and 12 month post transplant success/mortality rates.  Their numbers hit below par. Therefore, they have taken steps to rectify the situation.  Pump the brakes a little bit if you will, making sure that they are taking on better cases, ensuring better organ matches.  Basically just being really careful.  These are all positive changes, but that has also meant that the total number of transplants has decreased, and wait times has been longer.

So here we are.  Thankfully, the chemotherapy that we did last year has done its job.  The tumors are roughly the same size, allowing us the luxury of waiting for a perfect match.  While waiting for the call is a complete mind game, we are making the most out of time together as a family.

Today I went in to Georgetown for another round of tests.  MRI with and without contrast, CT Scan of the chest, and labwork.  I don't know the results yet but it's a pretty frequent routine for me now having to do this same thing every three months to maintain my spot on the transplant list.

For people who want a little background, humility, and humor this is how it goes:
I try to schedule all tests and labwork for a single day.  The alarm goes off when it's still dark outside, 5am something, jump in to the shower and jump out, long sleeve cotton shirt, soccer warmups or hiking pants with no metal, and slide into my orange crocs.  I get out the door blowing down RT 66 like Dean Moriarity (Kerouc reference anyone?) to try to beat the HOV restrictions heading into the City.

Once I get there, I have to pay for parking (the single thing that drives me crazy because I'm already paying through the nose for tests and such).  I walk in to the imaging department and have to fill out a form saying I'm not pregnant, I don't have shrapnel in my body, and that I don't have prosthetic limbs or a penile implant.  This last point has had Tessa and I snickering every time.  I''ll leave it to Google and you in your spare time, but apparently the can put metal rods in there.

I know who is on the overnight shift and the early morning shift.  I know Patrick the happy go lucky Jamaican who frequents listening to NPR and travels to visit family in London.  I know Kelly, the lady at the front desk, who is grappling with fertility treatment after treatment, and the debt collectors who are calling her.  In general, all of these people are like family in an odd way, you see them all the time. You care about them, and they care about you.  It's the golden rule exemplified.

Anyway, they drop in an IV, immediately test my kidney function (also to be used to administer the Gadolinium test during the scan), I throw all my stuff in a locker, put on a pair of hospital socks that are supposed to fit up to size 12 (and I'm a size 13.5-14), and walk over to the MRI room.  I lay down to be pushed through a tube for 45 minutes being told when I can breathe and when I can't.  It's pretty relaxing usually because it's so early in the morning and I'm exhausted and haven't eaten anything in since the night before.  They do put headphones on you and you get to pick a station to try to drown out the MRI noise.  When the MRI gets going, it is a truly weird feeling.   Kind of like a warm knife quickly moving through a cross section of your body. Just when it's almost uncomfortable, it stops and then they do it again.  Just such an odd feeling.

So how am I feeling and what's the outlook?

I don't feel sick and I don't have any symptoms that I can notice.  I feel healthier than people my age which is scary.  If I hadn't gotten tested I'm sure things would be in a much less optimistic state right now.  Thank god for scans / check-ups.

I'm still playing soccer at least once a week right now which I don't know how I'll do without when I have the transplant.  The transplant still looms over me and I have no idea of when things will happen. My current guess is May time frame because that is when my next MELD upgrade is.  I'm a 29 now, and it will either push to a 30 or higher. One of my big fears is not so much.  Surprisingly, surviving the transplant is not my biggest fear.  I've got faith in my body, how it will handle the surgery, and that the doctors at Georgetown are more than capable.  My biggest concern/fear is how my quality of life will change.  I'll be needing to take immuno-suppressant medication daily for the rest of my life(to ensure that my body does not recognize my "new liver" as a foreign body and try to fight it.  That would render it unsuccessful.)  I worry about how frail I might be, or if I'll be able to resume normal activities like my outdoor adventures etc.  (Maybe less so for myself but I desperately want to be a guide in the wilderness for my kids and really teach them to love and appreciate the outdoors and power of mother nature).

It's getting late...I hope that my comments / thoughts help to keep you up-to-date and I appreciate you reading / following.  It means you care.  I've never met anyone with a perfect life yet so it's always good for us to all express our fears / weaknesses / and secrets.  I feel like it helps you heal.

Best to you....


  1. Big hugs & kisses from the Patels. Trust me, no one is worried about you being frail. We are worried that we'll be so embarrassed by your great health after the liver transplant that we'll have to get off of our a**es and do something. MWAH! M&M

  2. Thanks for sharing your honest thoughts (and fears) Matt. Frailty isn't in your nature though. You may know of this player already but in case not check out Eric Abidal - professional soccer superstar both before and after his liver transplant.

  3. So glad for the update, Matt, you're always in my prayers...May seems so close, but far also. I just want to hold today still and close and be happy you feel so well, all the while quietly hoping an unneeded liver is near. "It's a conundrum," truly, which is also a phrase every 2.5 year old needs to be taught so they can solemnly, thoughtfully say it while munching on M &M's they have fanagled by dispensing bodily fluids out in well planned intervals... :)