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....
Tuesday, April 29, 2008
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!
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!
Wednesday, April 23, 2008
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...
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...
Sunday, April 20, 2008
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
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...
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...
On to Chemo...
At our first doctors appointment for chemo, the doctors and nurses explained what drugs wold be used how one might react. Tons of information. One of the weird things about chemo as we were warned. No sharing of body fluids while on chemo, no kissing, no sex, AND if possible to use seperate bathrooms? Ummm can you so holy cow! If this stuff is so bad why are you putting it in people?? Hello!
Anyway, at this appointment the Chemo doctor recommended my husband go see a big wig doctor here at the University of Florida, Shands, seems this doctor had a surgery he had done in the past to patients with liver cancer, and maybe he could help us! The call was put in immediately to get Myles into see him.
After this Myles went in for a day stay type surgery to have a chemo port put in. This was actually a great idea keeps them from having to put in IV's every time they had chemo.
A few weeks before we were to start chemo we went to our UF surgeon appointment. The doctor explained all the risks involved with this type surgery, even went as far as telling Myles that he may die on the table. If this was something Myles wanted to go forward with and do, then tons of things had to happen first. First being changing his chemo drugs before he started to something stronger, the liver cancer had to shrink before the surgery could take place.
From July 2003 to January 2004 Myles had chemo every other week, on that one day he had chemo he was there ALL day being infused with drugs, at the end of the day they he came home with a waist pouch with another drug that had to be infused over a 24 hour period. Chemo day was a bad day for Myles, feeling horrible, vomiting the works.
CatScans were done every other month to see how the liver was responding to chemo, was it shrinking? December 2003, the cancer on the liver had shrunk by 40%! This was great news! Our next appointment to see the UF doctor was right before Christmas, and he gave us the news that since the liver was responding so great to the chemo, the surgery could now be scheduled, and all chemo stopped as of now! Fantastic news!
Maybe there was a good end to all this after all???
Anyway, at this appointment the Chemo doctor recommended my husband go see a big wig doctor here at the University of Florida, Shands, seems this doctor had a surgery he had done in the past to patients with liver cancer, and maybe he could help us! The call was put in immediately to get Myles into see him.
After this Myles went in for a day stay type surgery to have a chemo port put in. This was actually a great idea keeps them from having to put in IV's every time they had chemo.
A few weeks before we were to start chemo we went to our UF surgeon appointment. The doctor explained all the risks involved with this type surgery, even went as far as telling Myles that he may die on the table. If this was something Myles wanted to go forward with and do, then tons of things had to happen first. First being changing his chemo drugs before he started to something stronger, the liver cancer had to shrink before the surgery could take place.
From July 2003 to January 2004 Myles had chemo every other week, on that one day he had chemo he was there ALL day being infused with drugs, at the end of the day they he came home with a waist pouch with another drug that had to be infused over a 24 hour period. Chemo day was a bad day for Myles, feeling horrible, vomiting the works.
CatScans were done every other month to see how the liver was responding to chemo, was it shrinking? December 2003, the cancer on the liver had shrunk by 40%! This was great news! Our next appointment to see the UF doctor was right before Christmas, and he gave us the news that since the liver was responding so great to the chemo, the surgery could now be scheduled, and all chemo stopped as of now! Fantastic news!
Maybe there was a good end to all this after all???
Stage 4 Colon Cancer
January 2003, I noticed my husband was loosing a LOT of weight, he was looking fantastic! Tall dark and handsome, that was my Myles!
Jump to May 2003.
Myles was STILL loosing weight, but now he didn't look so good, he had that gaunt look about him. I begged daily for him to go to a doctor, and he didn't. Finally I called his father, (Dad could make him do anything LOL) Finally he gave in and made the appointment.
Monday: Day of the appointment he choose to go alone, I respected that knowing he would tell me how it went anyway. He called, the doctor has scheduled him for a CatScan the following morning. We still had NO idea where this was all leading.
Tuesday: Next day came, Myles went to his CatScan, he was told the results would be sent to the doctor in the morning, so he went back to work. We were blissfully unaware how our world would fall apart in a few hours...
I was dressing to go to work at 1pm, sitter was here playing with the baby so I was doing my thing when the phone rang. It was Myles' doctor he needed to see us BOTH in his office as soon as possible, it was a matter of grave importance, okkkk, hung up. I wasn't sure what to think, but the called scared me a LOT, I called Myles at work and told him, he was coming home for me. I called into work sick, I had to go to this meeting no way around it. Fire me if you must, I was going!
Doctors office, we were took straight into the back at the doctors office (that NEVER happens) the doctor came right in (I knew something was very wrong now) All the doctor said to us was he was very sorry but the results of the CatScan showed what he believed was colon cancer. He couldn't tell us what stage at this point, but it looked bad on the scan.
Wednesday: Gastro Doctor appointment, they schedule him for an immediate colonoscopy the next morning. (Can't be same day you have to do major body clean out first, can you say yuck?!)
Thursday: Colonoscopy, now scared out of our minds, we have had time to research colon cancer, and it wasn't good! The procedure was about 2 hours long start to finish. Waiting was so hard, I paced, I walked, I called people, anything to help pass the time. Finally I was called back, it was over, the doctor wanted to speak with us both about the results. They took me into the recovery room and over to where Myles was laying on a stretcher. He was still a little out of it, but I could see it was fading pretty fast. 1o minutes inside Myles was getting pretty clear headed, so they called the doctor and let him know Myles was ready and that I had arrived.
In comes the doctor, now this is where I KNEW he was giving us bad news, he stood beside me and as he talked to us, he reached out to took hold of my hand and squeezed it. Yep, news was bad....stage 4 colon cancer, the worse stage it could have been. The doctor gave Myles 6 months. WOW in the blink of an eye a death sentence for a 43 year old man. The doctor went and called the surgeon to schedule Myles in as soon as possible. Surgeon appointment was the next day Friday.
Friday: Surgeon appointment in the afternoon, by this time I wasn't working anymore, I had to be with Myles no matter what. In to see the surgeon, surgery had to be done immediately, so it was scheduled for first thing the next morning (Saturday). Home we went to try to prepare (Ya right) for the next day. Family called, and coming in, sitter called, we spent the evening the three of us playing games, whatever just spend time together.
Saturday: Colon surgery, our time came and went, seems we had been pushed aside for late starting surgery before ours. Finally 10am they came for Myles, we hugged, we kissed, said our I love you's and they took him away.
3 Loooong hours later the surgeon came in, surgery was over, Myles was doing well in recovery, bad news was, his liver was 80% covered in cancer too, we had prayed, but worse case senerio they had told us about before surgery, well happened. After a month in the hospital recovering from everything that could have went wrong, Myles finally came home to recover.
And then there was chemo......
Jump to May 2003.
Myles was STILL loosing weight, but now he didn't look so good, he had that gaunt look about him. I begged daily for him to go to a doctor, and he didn't. Finally I called his father, (Dad could make him do anything LOL) Finally he gave in and made the appointment.
Monday: Day of the appointment he choose to go alone, I respected that knowing he would tell me how it went anyway. He called, the doctor has scheduled him for a CatScan the following morning. We still had NO idea where this was all leading.
Tuesday: Next day came, Myles went to his CatScan, he was told the results would be sent to the doctor in the morning, so he went back to work. We were blissfully unaware how our world would fall apart in a few hours...
I was dressing to go to work at 1pm, sitter was here playing with the baby so I was doing my thing when the phone rang. It was Myles' doctor he needed to see us BOTH in his office as soon as possible, it was a matter of grave importance, okkkk, hung up. I wasn't sure what to think, but the called scared me a LOT, I called Myles at work and told him, he was coming home for me. I called into work sick, I had to go to this meeting no way around it. Fire me if you must, I was going!
Doctors office, we were took straight into the back at the doctors office (that NEVER happens) the doctor came right in (I knew something was very wrong now) All the doctor said to us was he was very sorry but the results of the CatScan showed what he believed was colon cancer. He couldn't tell us what stage at this point, but it looked bad on the scan.
Wednesday: Gastro Doctor appointment, they schedule him for an immediate colonoscopy the next morning. (Can't be same day you have to do major body clean out first, can you say yuck?!)
Thursday: Colonoscopy, now scared out of our minds, we have had time to research colon cancer, and it wasn't good! The procedure was about 2 hours long start to finish. Waiting was so hard, I paced, I walked, I called people, anything to help pass the time. Finally I was called back, it was over, the doctor wanted to speak with us both about the results. They took me into the recovery room and over to where Myles was laying on a stretcher. He was still a little out of it, but I could see it was fading pretty fast. 1o minutes inside Myles was getting pretty clear headed, so they called the doctor and let him know Myles was ready and that I had arrived.
In comes the doctor, now this is where I KNEW he was giving us bad news, he stood beside me and as he talked to us, he reached out to took hold of my hand and squeezed it. Yep, news was bad....stage 4 colon cancer, the worse stage it could have been. The doctor gave Myles 6 months. WOW in the blink of an eye a death sentence for a 43 year old man. The doctor went and called the surgeon to schedule Myles in as soon as possible. Surgeon appointment was the next day Friday.
Friday: Surgeon appointment in the afternoon, by this time I wasn't working anymore, I had to be with Myles no matter what. In to see the surgeon, surgery had to be done immediately, so it was scheduled for first thing the next morning (Saturday). Home we went to try to prepare (Ya right) for the next day. Family called, and coming in, sitter called, we spent the evening the three of us playing games, whatever just spend time together.
Saturday: Colon surgery, our time came and went, seems we had been pushed aside for late starting surgery before ours. Finally 10am they came for Myles, we hugged, we kissed, said our I love you's and they took him away.
3 Loooong hours later the surgeon came in, surgery was over, Myles was doing well in recovery, bad news was, his liver was 80% covered in cancer too, we had prayed, but worse case senerio they had told us about before surgery, well happened. After a month in the hospital recovering from everything that could have went wrong, Myles finally came home to recover.
And then there was chemo......
Meeting and Beyond!
We knew each other for over a year before meeting in real life. I can remember like it was yesterday the first time I saw him. I had no idea it was Myles, this handsome man came out of a door and was walking my way smiling, I tell ya my heart skipped a beat! This gorgeous guy came up to me, ME, and introduced his self, I was speechless, I couldn't believe this was the person I had been chatting with online. There was no shyness like one would expect, we started talking just like we did online, it was amazing! Four hours later we both went to our separate homes and got on the computer and talked more! After that night we continued talking daily and would meet face to face once a week, this went on for 3 years. I guess I should mention here we were both married to other people at this time. both of us divorced our spouses in the 3 years.
We had a beautiful friendship, and we continued it with a wonderful marriage October 1999. We both had always wanted children in previous marriages but the EX's didn't! So one of the first things after getting married that we both longed for was a family. We had purchased a home before we were married so the stage was set! All we needed was to get pregnant!
New Years Eve 1999/2000, lots of loving and baby dust flying around! 2 weeks later we discovered we were pregnant! woo hoo! After a very uneventful pregnancy I gave birth September 2000 to a beautiful, healthy baby girl whom we named Marissa Rose.
My world was complete, we were happy in our marriage, our baby was thriving from our love, what could possibly go wrong.....
We had a beautiful friendship, and we continued it with a wonderful marriage October 1999. We both had always wanted children in previous marriages but the EX's didn't! So one of the first things after getting married that we both longed for was a family. We had purchased a home before we were married so the stage was set! All we needed was to get pregnant!
New Years Eve 1999/2000, lots of loving and baby dust flying around! 2 weeks later we discovered we were pregnant! woo hoo! After a very uneventful pregnancy I gave birth September 2000 to a beautiful, healthy baby girl whom we named Marissa Rose.
My world was complete, we were happy in our marriage, our baby was thriving from our love, what could possibly go wrong.....
Welcome to my personal blog!
This blog is my therapy, I needed some place to write about our battle with colon cancer. Only a hand full of people actually know our story, so it feels good that after 3 and a half years I can finally put Myles' story out there for other that maybe facing the unknown with colon cancer. If you or someone you know has colon cancer, I know you feel alone, but your not.
My advise to you, do your research before you do anything! Make the doctors answer your questions, it IS their job to keep you informed!
Have a great day, and don't forget to hug the ones you love often!
Denise
My advise to you, do your research before you do anything! Make the doctors answer your questions, it IS their job to keep you informed!
Have a great day, and don't forget to hug the ones you love often!
Denise
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