Thursday, December 9, 2010

Chewing is no longer overrated!

Last night I went to the Hard Rock Casino with my parents. They had a food voucher for the Rock N Raw upstairs, the sushi bar my Dad and I love. He obviously couldn't eat sushi, which was hard for him. He's been commenting on food a lot when he sees it on billboards, commercials, etc. Makes us sad. I ordered a sushi roll I didn't think he would like and he got Wonton soup to eat the broth, which was a task itself since there were green onions in it. It hurt me sitting there watching my Dad strain his Wonton soup as I ate my Beautiful Girl roll. I've never appreciated food so much and the privelege to be able to eat it, much less have it.

Fortunately, this all changes after today's appointment. My Dad is no longer on a liquid diet. Hooray! Dr. Barthel installed three stints into his esophagus to help food get by the tumor. They were only going to install one but three were needed to make it work. It's amazing they are able to do this! He still can't eat meat, but as long as the food is smaller than a dime he can have it! I think we'll be enjoying a salmon dinner with mashed potatoes soon! The liquid diet was hard on my mom. She doesn't really like to cook for just two people so I've been missing our family meals. She did cook chicken noodle soup the other night. I've been sick so it was great for me and the broth was great for my Dad. Now there can be more of a sense of normalcy with my Dad being able to eat and not just drink. Thank God.

Tomorrow he goes his for a follow-up on his mediport and there are more testing appointments next week. After all of these, the radiation and chemo should begin... Finally.

"Even though I walk through the darkest valley, I will fear no evil, for I know You are with me.." Pslam 23

Tuesday, December 7, 2010

The Battle becomes more Complicated

Elizabeth Edwards dies of Cancer at age 61. Seeing headlines like this makes me very sad. Rest in Peace and blessings toward the family. Though she lost her battle, I hope my Dad can find the strength to fight his even harder now.

He was supposed to have a procedure today called an endoscopy where they were going to take a scope with cameras down the esophagus to accurately stage it. The scope wouldn't fit past the tumor. They went ahead and had a surgical procedure which including placing the radiation balls where they could, inserting a breathing tube as there was a piece of dead tumor that was coming off as they were doing the scope. They were afraid it may break off and he as asperate it, so they removed it. I don't really understand "dead tumor" and all that entails. All of this stuff doesn't really make sense to me so I'm just relaying what I hear from the doctors.

They also discovered that the tumor is actuall 13cm large instead of the initially supposed 10cm. The cancer has spread to more lymph nodes and has in fact spread to the lining of the lungs. They are still going to continue with radiation and chemo. But, whether or not they can perform surgery after all the treatments are done is to be deteremined at that time.

Lord give us strength.

My Dad has been sleeping most of the day from the high amount of anesthetic given. I can tell he is scared though, as is my mom. We all have to be strong for each other.

And apparently the doctor said this is only 20-30% curable, which is hard for me to hear.

He has another appointment for Thursday to continue mapping him out for radiation, I believe. And then Tuesday they perform a bronchitis inspection and may insert a stint into his trachea to help him breath and also insert a tube into his esophagus to help him eat more than just liquids. He may be able to eat yogurts, pudding and baby food type products instead of just strictly liquids that poor.

Every time he has an appointment the game plan changes. I understand this is a complicated disease but don't understand how the different doctors find different things and the plan of attack changes. I guess the important thing is that it still is curable and they are still proceeding with radiation and chemo. Thank you all for your continued thoughts and prayers. My friend Carly sent us a a sweet card and some smoothie receipes for my Dad to try. It was the sweetest thing. He really enjoyed the Cherry Berry Smoothie. Thank you Carly! I don't know what I would do without this support from family and friends.

"God is our refuge and strength, an ever-present help in trouble." Psalm 46:1

Saturday, December 4, 2010

The Esophagus Lit Up Like a Christmas Tree

Cheers and claps filled the Moffitt Cancer Center exam room as Dr. Shadir announced to us that the cancer hadn't spread to any other part of the body. It's kinda sad how excited we were for stage 3 cancer, but the most important thing is that it is curable at this stage! The doctor did have a "but." In the PET scan they saw an issue with the tumor effecting my Dad's trachea. It is either putting pressure on it or invading it. If the tumor is in fact invading the trachea than they cannot perform surgery as planned after the radiation and chemo. And they would need to install a stint into the trachea to help my Dad breathe. We're hoping it is just pressure so that they can surgically remove the effected area after treatment. This will be determined by a pulmonary doctor at USF examining the trachea. This is the next step. And on Tuesday my Dad has an endoscopy with Dr. Barthel so determine which type of chemo they are going to proceed with to get rid of this giant tumor in his esophagus!

The doctor showed us the PET scan. It was crazy to look at. The tumor takes up pretty much the whole esophagus and it was glowing on the scan. They inject $7,000 worth of nuclear radiation to read this scan. It is a mix of a CAT scan and an MRI. Wherever there are cancer cells, they say you will light up like a Christmas tree. Thank God the esophagus was the only glowing part. It isn't stage 4!!!

My Dad also volunteered for them to take some of his cells to run a study on to help future patients. They will treat the cells with different types of chemo and see the results. Anything to help cancer research!

They are planning to start radiation on Dec. 20th. They have to scope out the trachea, esophagus and install golden radiation balls in him to get the treatment going. It is amazing how much time, tests and research all of this takes.

Today we are spending the day decorating the house for Christmas while jamming out to Christmas music! We've spent many Christmas' in FL but this our first official FL Christmas living here so it is pretty exciting! All of this has made me really appreciate the little moments like these. Every Christmas it is always my Dad and I that place the tree topper. Ever since I can remember he would pick me up to put the Angel on top of the tree or hold me as I stood on a chair (obviously I'm not a little girl to be just picked up anymore!). Well back to decorating. Thank you everyone so much for your prayers and thoughts. We're so thankful that it didn't spread and that he is curable!! Keep them coming!

Wednesday, December 1, 2010

Lets get the ball rolling ...

Yesterday my Dad had a follow-up with Dr. Coris, primary doctor. I went along for the appointment. He is kinda our family doctor now. It is great. Once I get health insurance I'll go see him!

Dr. Coris assured my Dad that he needs to remain positive. He prescribed liquid forms of his medicines, took him off some to save his liver for the chemo and prescribed some anti anxiety/depressing medicine as well. He chatted with my Dad for over an hour. He was great. Said some people don't react to the chemo and some do. We won't know until we start.

Which, is going to start with Moffitt, which is where we went today. My Dad met with 5 doctors today. This morning he met with the radiologist. I missed these earlier appointments as I was at work so this is all the basic information I was told about when I got there. They will set up the appointment to start the mapping and radiation for the week of the 13th. He has to have the radiation for 5 days straight for 6 weeks. He is off on weekends. He also met with the Moffitt surgery team and when I got there he was meeting with the endoscopy team.

Remember how our hopes were built up when we were told it was ust a mass to be surgically removed? Well, Tampa General got our hopes up too when they told us it was Stage 3 Cancer and they were going to proceed with chemo and radiation at Moffitt. Tampa General also told us that the cancer hadn't spread to the lungs or liver. Huge relief. Well, Moffitt wants to run their own tests which there is a slight chance that the results will be different. They want to do a PET scan where my Dad gets a nuclear chemical injected and they run a scan. Wherever there are cancer cells, he will light up like a Christmas tree. Obviously we all hope that this test is confined to the esophagus. It just absolutely SUCKS because we were under the impression that it hadn't spread. Now, we have to wait for this test, which the doctors wanted done tomorrow! Well, discharge didn't happen until 6 p.m. so they were unable to schedule it for the next day. So, they may be able to squeez him in or they will do it Dec. 7th at the latest.

Waiting to get that test is the worst feeling. Hopefully it is confined and then the endoscopy team can run their test to determine if it is Stage 2 or 3. If the PET scan shows it has spread it is Stage 4 and they will just do chemo and make him comfortable. I don't think I can handle that option.

If it is Stage 2 or 3, they will proceed with the 6-8 weeks of chemo and radiation and do surgery regardless of if it shrank away or not. Even if ONE cancer cell remains it can grow. I've learned so much about this disease. I was naive about it before and fear I still am. The American Cancer Society sent up a lot of literature on the Esophageal Cancer. They have come a long way with this form of cancer. Any information online that is older than three months, they told us might as well be 10 years old. It is very agressive so it will act agressive to the chemo as well, which is positive. With the surgery they will remove his esophagus, re-attach the stomach and move everything up. After surgery he will be on a feeding tube for three months while the esopha-stomach-gus heals. This was difficult for me to hear. My Dad is going to get so frail and skinny with all the treatments and then being on a feeding tube.

So here we are again with no definite answer.

I hope Moffitt can get my Dad in tomorrow or Friday for the PET scan. The nuclear injection costs them $7,000. Crazy.

Please pray that it isn't Stage 4.
Please please pray.

I feel the more people I tell and the more prayers and positive thoughts there are out there the more God will hear and help with strength.

Positive thoughts and prayers everyone as we play this waiting game.

Much to be Thankful for!

This Thanksgiving was the first time we had all been together since I can even remember! My sisters, nieces, parents and brother-in-law were all together for a lovely Thanksgiving meal. We played Taboo, watched football, ate/drank and enjoyed each other's company. We had a plate full of food and my Dad had some lovely blended drinks:

Blended extra mashed potatoes and gravy
Blended sweet potatoes, which he really liked
Blended cranberries
Blended dressing/stuffing with gravy
Blended pumpkin pie with ice cream for dessert!

He may not of had to chew his dinner but he sure got to taste everything!

Every year we go around the table and say what we are thankful for. We were all thankful for family. My Dad, who usually is thankful for his health, is thankful for the care and that all will go well and for his family and support.

We had a wonderful, wonderful day together.

Letting it all sink in ...

I really don't like the word cancer. I can type it just fine. It is another word amongst the many others. But, when it comes out of my mouth in relation to my Dad ... it just doesn't work.

My sisters and I all called into work those days in the hospital and some of the next few. When I did go into work my manager told me I looked pale (this was out of concern). All my friends and coworkers have been great about all of this. I'm overwhelmed by all the support. I truly believe that positive thoughts and prayers will help my Dad and us get through this.

Please pray for strength for my Dad.
Please pray for strength my my family and I.
Please pray that the chemo and radiation work.
Please pray that surgery goes as planned and recovery is great.
Pleas pray that it doesn't spread.

My Dad went in last Monday to get his mediport installed at Tampa General. They squeezed him in at last moment since at Moffitt it would take weeks to get installed. This is what they will pump the chemo through so they don't have to prick my Dad multiple times. He is bad with needles. So now he has a small bump under his skin in his chest area. It healed up well.

The liquid diet is hard ... he misses his food. He has to have 2400 calories a day. We need to plump him up for chemo and he lost 10 lbs the last three weeks. I was right... he had lost weight. But I'm sad it was because of this. Smoothie King has a smoothie called The Hulk, which we light to get for him with strawberry ice cream. 1035 calories! I stuck to the Angel Food smoothie with 300 calories. As Smoothie King says, "Chewing is Overrated." Great slogan guys.

I'm still in a state of shock I think. My Dad is being a trooper. He has his ups and downs but overall I think he will have the mental strength to get through this.

November 19th ... Time to go home ...

They were hoping to send my Dad home today, but there were still more tests to be done and doctors to meet. He met with the surgery team and oncologists. They did a Berryum test on him to see what he could eat/drink. This is where you drink this glowing chemical as they x-ray you. They discovered that ONLY liquids were to be consumed as nothing else could get pass the tumor. During the endoscopy they said the tumor was pliable and soft. They deteremined it was Stage 3 Esophageal Cancer. The tumor was 10 cm and would need to be 5 cm or less to be surgically removed. This is all what Tampa General told us. From this point we were going to deal with Moffitt Cancer Center, a world-renowned cancer center here in Tampa. The tumor is to be shrunk with 6-8 weeks of chemo and radiation. Every day. A month after the treatments they will scan to see what the results were. If 5 cm or less, the tumor infected esophagus would be surgically removed, the stomach moved up and the intestines stretched. If it didn't shrink ... they'd continue treatment or just make him comfortable. Tampa General even told us there was a possibility that the tumor would radiate all away.

Barry was super sweet and bought the whole family LIVESTRONG bracelets so we would remember to be strong thoughout this whole experience. We are so blessed to all be together for this.
Discharge was at around 8 p.m.

My Dad was really excited about going home. Melissa, Barry and my parents went and watched the sunset. Gorgeous.


November 18th ... D-Day

Today was the day my Dad was supposed to have surgery to remove said mass in his esophagus. My sister, Tonya, and I got there around scheduled surgery time and my Mom and Melissa were already there. As we were driving there we were told that the biopsy results showed that the mass was a stricture and was going to be surgically removed. Huge relief. As we go into the surgery prep room we are joking about removing the mass and getting a McRib after all is over with. My Dad was hungry since he hadn't eated in a few days since the GI and all of these tests. Dr. Mamel came in as we were saying a prayer for a safe surgery. He told us that it is still a possibility that it is a tumor. We all blankley stare at each other as they take my Dad in for surgery.


This was the gorgeous view of the waiting room that we cried and waited in. Melissa is crying as there's a strong possibility as Daddy has cancer. Tonya, my Mom and I are more so in a state of shock. Barry comes. A doctor comes in to let us know what is going on and to sign a few paperwork. At about 10 a.m. they say surgery is over and we can go see him. He is still a little out from the anesthetic. He wakes up. Dr. Mamel comes in. He has pictures from the endoscopy. There was no surgery obviously. He is showing us pictures of his esophagus, which are just aweful. So, I have to sit down since I have a weak stomach. Dr. Mamel starts saying the word cancer. My sisters, Mom and I stare at each other with eyes like deer in headlights. The pictures and the word cancer are overwhelming me, and I ask my brother-in-law Barry, a firefighter/EMT, for a bucket as I feel like I am going to throw up. Instead, I pass out, hit the bed rail. They end up yelling Code Purple on me and I end up in a bed with an IV and oxygen mask hyperventilating. I have asthma but no health insurance so this is a bad situation. They wanted to take me to the ER, thank God they told them not to. Barry helps take care of me. My poor Mom and sisters are now worried about me as Dr. Mamel keeps talking. I see my other brother-in-law, Jose, out of the corner of my eye and the next thing I remeber is waking up in a room (with a view of the bay which my mom and I joked about because my Dad joked about having a room with a view) and a TV with a deer and flowers on it. There was an ER unit team that came up. They told my Dad I passed out because I didn't eat (we think I have hypoglycemia) so he wouldn't worry about how I reacted to the news about him. My Mom later told me that as Dr. Mamel was talking about all of this she saw a tear run down my Dad's face.

We spend the rest of the day in hospital. They run all sorts of tests on him. All sorts of doctors come in and talk to us. Internal medicine, surgery teams, etc. Melissa is constantly crying. Tonya cries in spurts. I may not have cried, but I reacted. My Dad didn't understand his diagnosis at first. He asked my Mom ... so it isn't cancerous or anything? We left the room and let her explain to him. I spent the night at the hospital with my Daddy that night. Melissa stayed, too. My Mom needed some rest. I slept surprisingly well but woke up right away when my Dad did and needed to go to the bathroom or when the nurses came in to check vitals and take blood at 4 a.m. He was actually quite the trooper and his spirits were pretty high. But, of course hadn't really sunk in yet for him.

November 17th

(Warning: this one is a bit graphic)
This was the day my Dad went in for his upper and lower GI at USF Health with Dr. Mamel. The day before he had to drink just the cleansing liquid. I drove him and my Mom to his appointment at 7:30 a.m. It was going to take four hours to complete the set up, procedure and recovery from anesthesia. My Mom called me at 11:30 a.m. telling me she needed me and to get to USF. I was under the impression that they were ready to go. Well, I get there and come to find out, the lower GI went great but not the upper. As they went down the esophagus for the upper GI they actually discovered rotten food, mostly meat lodged in his esophagus. They proceeded to pull this out, which they said smelled like death, until they got to a point where it was no longer meat/food. The said it could've been tissue grown over food, a stricture or a tumor, but they thought it was a removable mass. So, they proceeded to admit him to surgery but at Tampa General Hospital. Surgery was to occur at 7:30 a.m. the next day. They discharged him from USF and off to Tampa General we went. They did some blood work, ran some scans and a biopsy on the mass discovered in his esophagus. No results that day. My sisters and I went home for the night and my Mom spent the night at the hospital with Daddy.

From the beginning ...

Expressing my feelings in writing seems like the best option for this situation. Also, this will be easy to update family and friends on my Dad's experience. So ... here we go.

In February I moved to Tampa, FL with my parents. They were the typical retire to FL and my unemployed self came along and transfered Coach stores in search of full-time employment. My sisters, Melissa and Tonya, and lived in Tampa for years with their families so it has been a blessing us being all together. Little did we know how important it actually was for us all to be together.

Once we were settled in we encouraged my Dad to get to the doctor for a check up as he hasn't been in a while and is 66. My Granny is in a home for Alzheimers so we wanted to make sure he was all right since he was showing some worrying signs. My brother-in-law, Jose, is the USF Womens Basketball Coach and has a great relationship with Dr. Coris, one of the team doctors. My Dad proceeded with check up appointments and went in recently with chest pains and difficulty swallowing. He felt bad for a few weeks and I noticed that he lost a signifcant amount of weight the last few weeks. "Daddy, you look skinny," I said one day a few weeks ago. The doctor suggested he set up an upper and lower GI so my Dad did ... for November 17th.