Friday, July 24, 2015

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).

Wednesday, July 22, 2015

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).


Sunday, July 19, 2015

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.

Tuesday, July 14, 2015

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

Monday, July 13, 2015

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:

Monday, July 6, 2015

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.