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!

Tuesday, May 5, 2015

05/23/2015 - Eff Cancer and the Horse it rides in on

I realize this will sound like a fairly blunt and emotionless communication, but I wanted to let you all know that roughly two weeks ago, I was diagnosed with liver cancer.  

For those of you who don't know, I fought and beat cancer when I was 7.  During this time I received a blood transfusion (which at the time was not screened for other liver damaging disease agents).  I got Hepatitis C from this transfusion at the age of 7 which was only detected when I tried to donate blood in HS, nearly 10 years later.  In the late 90s, there were only some very basic treatment options available, so I tried twice with no success to cure it.  I had a very difficult strain to overcome with medicine.  Some of you may remember when I took a semester off, and it was to try a new treatment.  These treatments were horrible where you self-inject several times a week and are on other drugs to balance out the ill effects of one drug or another.

Fast forward to pre-babies.  There was a new drug from Gilead that became available at nearly $1k per pill per day that was available but the medication was / is known to cause birth defects.  I waited on the treatment and we took our shot at having kids.  I honestly never thought Tessa and I would be able to have kids because I was treated with both Chemotherapy and Radiation when I was 7 and was told I might be sterile.  That whole myth was debunked when we found out we were having twins. (Super lucky to have two cute babies who are healthy).

After the twins were delivered I started on Gilead's Sovaldi treatment, June 24th, 2014.  When the bottles arrived with the pills, it was nearly $100k of pills in a single FedEx envelope.  I took a picture of them, popped my first pill, and continued on this for just over 3 months.  After this treatment, the virus was eradicated (they test 3 months and 6 months post treatment).  I was cured of the liver damaging virus.  Sweet!

<Skipping the banding procedures that I had in the throat to prevent rupture / bleedout which were horrible and had to be done 3x in the last 1.5 years>

People who have had HCV for long periods of time usually have long lasting damage done to the liver, and I was no exception.  Because of the damage, the doctors had told me that I would likely need a CAT scan every 6 months as I had higher chance of liver cancer.  Post treatment, a CAT scan was performed.  

The scan they perform is with "contrast" or an agent that is injected into the vein and they can trace with pictures to show where the tracing agent is going.  In the scan in December 2014, the noted that there was a 20mm mass in my liver.  They thought it was odd but had noticed it in a previous scan when they compared it.  Usually, tumors double in size every 6 months so it was encouraging that it was roughly the same size.  Concerning about the Dec scan though was that the contrast could be seen circulating through the mass.  Blood going to the mass nearly certainly meant cancer.  

They sent me to a Georgetown hospital liver specialist in Fairfax to get a second opinion.  They advised that I get another scan at Georgetown to repeat the same test.  This test, done April 26th, did show the same results.  I was immediately contacted by Georgetown hospital after the scan and told that with the existing damage done already to my liver and with the cancer, that they would recommend localized cancer treatment and then a liver transplant.

Tomorrow, 5/62015 I will go with Tessa's family and my family to Georgetown to get screened for liver transplant.  This would determine all aspects needed to know what I would need for a compatible liver.  We're armed with questions to ask (Thank you Tessa!) and there is a lot of uncertainly as to next steps.  I will try to setup a blog or something if I can to keep a running status so people can check up on it if they want to know what's up.

My point in writing is to communicate this news to you all.  I'm not looking for pity and although very stressful and downbeat news, my family are trying to keep our spirits high and worry about the things we can control and not that things that we cannot.  I am not certain yet the physical / emotional toll this will take on us, but I want to let you know that if you do not hear anything from me, don't see FB posts, or i'm not as responsive as's not's me.

Cancer sucks and nobody should have to go through with this even once...but that's what's in the cards....fair or not.  I'll leave you all with my favorite John Wayne quote:

"Fuck Cancer and the horse it rides in on"