October 9, 1999

9 years ago today I married the love of my life, my soul mate, we had 5 beautiful and short years together. We had a wonderful marriage, a beautiful daughter, then we found out my husband had Stage 4 Colon Cancer, and our world fell apart. Myle passed away December 24, 2004 at the young age of 44, yes you read that right, Christmas Eve, our daughter was 4 at the time.

So… Today is our 9th Wedding Anniversary, do widows still celebrate their Wedding Anniversary’s? Well I’m going too! My daughter and I baked a cake last night and tonight I think we are going out to dinner! Ya, I think we will do that!

Don’t forget to hug the ones you love,

Denise

The Recovery that wasn't....

Myles spent the next 2 months in the hospital, July and August, waiting and hoping for the hole in his tummy and bowel to heal. Finally they decided hole or no hole he could come home. They sat it up for Home Health Care to come every few days. The first day they came was to teach me to change his ostommy (spelling) bag and to hook his IV nutrition up at night. Ugh, so NOT fun, but necessary! The ostommy bag was a pain to us both, but we accepted it.

Myles was home in September for our daughters 4th birthday, and a small hurricane! LOL It might have been fun had it not been for worrying so much about the power going out and Myles' IV, thankfully his boss brought over a truck with a generator in it for us to use.

October, Myles' tummy is healing, and in the healing of the wound, he keeps bursting blood vessels, and loosing too much blood, so off to the ER and back in the hospital over night!

More next time...

More surgery...

June 2004

10 am the next day, Myles is really out of it now, he's not aware of much of anything around him, we are im-patiently waiting for them to come and take him to another round of surgery. Finally they come for him and I follow them down to surgery holding. Doctor comes in warns me the surgery may be long again, and what they will be doing....

Reverse the flow of the liver using shunts, what does this mean? They put a shunt in his portal vein, shunt is in coming, portal vein is out going. Normally in coming is from the veins on the top of your liver, in Myles' case those are the ones that shrunk! Doctor warns me that Myles's chance for survival is somewhere around 10% not good odds!

After I think around 5 hours of surgery, I finally get the call, Myles had made it through! And the shunt was in place, the next 24 hours would be touch and go.

I go in to the hospital the next morning expecting the normal day after surgery of Myles being out of it, but MUCH to my surprise he was fully alert and sitting up in bed smiling and talking! Not only had he made it, but with flying colors!

Next morning to the step down floor, and the next after to the regular floor! He was doing awesome! When I got to the hospital this morning (3 days after the surgery) Myles was worried, seems as an intern was checking over his surgery wound he put a little pressure on it and something blackish looking came out?

Doctor came in shortly after I did to examine the wound, he took the bandages off and reached down and put pressure on it and the same black stuff came out. Stepped back and said "Looks like you have a hole in your bowel, I Knew I had nicked something on the way out!" OMG now what? Well, nothing, Myles has been through too much, they doubt he would survive another surgery AND they don't think the surgery would help to close it. He needs to recover some before they try to repair it.

More on life with Myles and a hole in the bowel next time....

Home!

April 2004

Myles is home now, doing awesome, eating good, gaining weight, everything he should be doing to recover from the major surgery he had.

After a month of being home from the hospital we received a call from the Shands Cancer center, Myles had an appointment to start chemo? What the hell, he just had major surgery reconstructing major arteries and they wanted him to do chemo? Call me stupid but doesn't chemo shrink tissue??? Anyway his appointment was for this same day! I put a call into his doctor, trying to find out what was going on, of course no call back. Myles decided to go in to the appointment and make them give answers BEFORE allowing them to do chemo. Come to find out the doctor had a meeting and all decided he needed to have a few rounds of chemo to make sure no extra cancer cells were floating around in there.

First chemo, not a lot of problems, minor swelling in his ankles, and of course sick and throwing up.

Second chemo, about the same only a little more swelling.

Third chemo, his ankles doubled in size, he was starting to look bad. I called to the doctor, they asked me to bring him in so the doctor could see him. After a few minutes in we were sent to ER. Next day they ran all kinds of tests, Myles is steading going down hill now. They decided they needed to do a cathrization (sp?) and see what was going on in there.

Remember how chemo shrinks? Guess what it shrank? You guessed it! All those NEW veins they had JUST made! The main veins coming into his liver had almost shrank and closed up. So...now Myles needed emergency surgery to save his life! Surgery is first thing in the morning!

After the surgery...

Day 1: I had to call the ICU unit and ask if I could see Myles, they had forgotten to call me! Had I not wanted to see Myles so bad I would have raised hell! 3 hours after his surgery my Mom and I went in. They had him in a drug induced coma, machines everywhere, considering all he had been through that day he looked good! After 15 hours in the hospital I "finally" went home to hug my little girl and rest up to go back the next day!

Day 2: You can't get into ICU till after 11am, so I called in to check on Myles he was same condition I was told. At 11am I was at the hospital for what I thought was a short day. Went into the Pod Myles was in talked to nurses, held Myles' hand. The nurse came over to check Myles' tummy and pulled his blankets down, OMG he looked pregnant! The nurse said they believed Myles was bleeding internally! I start asking to see a doctor, finally the "big" doctor came in and confirmed that one or more of the new blood vessels was leaking! If it continued Myles would have to go back in to surgery to repair them, he would make the decision to fix or not in 2 hours. More waiting, you can only stay in the ICU pod 15 minutes at a time.

2 hours later (5pm) back to surgery he went! He was loosing blood way to fast. 2 hours of surgery to repair the blood vessels, he was taken back to his pod, Doctor said he had a "few" bleeders and that they were fixed..phew! At 9pm I got in to see him again, he was still in a coma, but didn't have a prego tummy, yay! 9pm another long day at the hospital.

Day 3: All was well, Myles was stable and recovering as expected.

Day 4: He's awake and alert! Still can't talk because of the tubes and such, but his eyes are open and he is somewhat alert!

Day 5: Tubes are coming out! Considering all he has been through he is doing awesome! He can talk and stay awake longer!

After one month in the hospital, Myles was released to go home, he wasn't 100% but he was getting better by day.

More another day.... Our Journey does not end here...

The "Big" Surgery.... Ex-Vivo Liver Resection

February 2004, contrary to Press Releases, the surgery WAS in February!

Thursday February 26, bright and early, to the hospital for pre ops, final surgery times are set, talk to doctors. We are set.

Friday February 27, 5am, we have to be at the hospital by 6am, surgery begins at 8am sharp. I don't remember much about this morning, except a lot of hugs, not much talking. The only thing I remember talking about is him telling me where the insurance policies were, bank information, power of attorney that kind of stuff. We woke Marissa, Myles wanted a chance to be with her before we left.

The six miles to the hospital went by so fast, we held hands the whole way. Once inside we waited for about 45 minutes to be taken to the surgery waiting area. After we arrived there, blood was drawn, IV's started. Then in came the parade of doctors, and I do mean parade! This surgery had a lot of doctors involved and we saw them all! Myles was very nervous as he should have been, they finally came in and gave him something to settle him some, he went to la la land and I was a nervous wreck!

Finally around 8:15 they came for him, they were ready to begin, the "big" doctor had arrived! Plans were made then and there, that I was to be called in the surgery waiting area at the top of each hour with an update on progress. 9 very long hours later, the wait was finally over, Myles had survived the surgery and was cancer free! I could finally take a deep breath one hurdle down.

Now on to recovery for Myles...

To read the official News Release on the surgery here is the link:
News Release

The Month Before the surgery....

February 2004:

Once the final decision was made to go ahead with the surgery we decided since the end result was so unknown, to spend as much time as possible being together as a family. Myles' birthday was in February so we made plans to take our daughter to Disney for her first time. I made it all the more special that Daddy would be with us to enjoy the moment.

We spent three wonderful days at Disney, we went to the Magic Kingdom, Animal Kingdom, and MGM. Who could be sad at Disney? We put everything aside and focused on fun, it was the best three days we had, had in months! It made it all the more special celebrating Myles' birthday too. Our last day there we spent at the Magic Kingdom. We stayed all day till the final fireworks display was over at 11pm, Marissa was on Myles' shoulders watching, she was 3 and a half by this time. Watching the 2 together, as they watched the fireworks was so hard, specially not knowing if this might be our last time together as a family. Thank god for the fireworks noise and the darkness, I was in tears the whole time.

Myles is now 44.

One week to the "big" surgery...