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

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

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.

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

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.

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

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

All,

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 usual...it's not you...it'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"