Friday, December 3, 2010

Thanksgiving and Temple

Thanksgiving was FANTASTIC!! I started off with an average sized meal for me with Jacob’s family for lunch and then I ate for dinner. My family just watched me at times like “Are you really going to eat all of that?” The only thing that was off limits was the turkey. Oh my goodness did I pay but oh was it worth it. I’m all about paying the consequences but this time, I think I pushed my limits. I should of went on down to the emergency room Saturday night because of not digesting but I toughed it out.

We left Tuesday morning for Temple University Hospital in Philadelphia. Jacob and mom went with me which was nice. I had this mentality that Philadelphia would be similar to New York City yet smaller and Temple would be bigger than Baptist Hospital. Oh my goodness, Temple was huge. The x-ray technicians told me they get lost at Temple. It occupied numerous city blocks; you could put Baptist Hospital in Temple.

My appointment went well. I really like Dr. Parkman. He listened and was thorough in his exam. He scheduled me that afternoon for a series a blood work, x-rays and of course my least favorite test of all, an anaorectal manometry. I was semi okay with the manometry until I heard I had to have TWO Fleet enemas. I was getting ready to come unglued. I had just given a bunch of blood, I was cramping and hot, I hadn’t really ate anything and I’m cleaning out in a Philadelphia hospital bathroom. People are knocking on the door and I’m yelling at them. I was not a nice person. I knew what test was coming my way. I did have a nice doctor and nurse though who did the test and they helped me relax through it. Unfortunately I had abnormalities in my test results.

Dr. Parkman talked about my Gastroparesis and how it had advanced. He talked about my stomach and intestines and how a pacemaker might not be the best answer because my colon might not be able to keep up. He went on to say that I may have a condition in my colon known as Hirschsprung Disease. I would be dealing with Gastroparesis and Hirschsprung Disease which would not be good. He wants to do a gastric emptying scan of my whole GI tract which will take four days. I go tack to Philadelphia December 14th.

I can deal with the Gastroparesis. I am just not sure about the Hirschsprung Disease. It seems very overwhelming together. Whatever happened to the normal stomach bug?

Sunday, November 21, 2010

thanksgiving and food...

This is my favorite time of year, from Halloween to New Year’s Day. I love everything about it. The d├ęcor, the music, certain holiday scents like pumpkin and gingerbread, even Christmas shopping but mostly spending time with family and friends.

All I have been able to think about lately is food and for a GP patient, that isn’t always a good thing. I was walking through the magazine aisle the other day; do you know how many magazines pertain to food during this time of year? A lot. After my past two Thanksgivings with GP, my GP is not making any progress in the right direction, each year I keep marking foods off my list. Last year I had a flare up right before Thanksgiving which left me sipping chicken broth and Gatorade while everyone else ate wonderful home cooked THANKSGIVING food. Guess what, I ate and I paid for it.

After this year’s course of GP events who knows where I’ll be next year (not trying to be a pessimist, just trying to be real), I could be right where I am now or I could be on liquids or a feeding tube. Who knows?! I ran this by my mom and ask her if she would host Thanksgiving at our house this year so she would be cooking the food. I didn’t want to offend anyone but what if this is my last Thanksgiving meal, I want it to be my mom’s cooking. Her cooking agrees with me best. She told me to get together some menu options for her and she’d make it happen. (THANK YOU MOM!) I made my list and I have to tell you, I am behaving this week. If I have to be on a liquid diet ALL WEEK to eat this meal, so be it. I’ll deal with the consequences later.

My Thanksgiving Menu

Sweet Potato Casserole (I will pay for this one)

Cranberry Sauce

Boiled Eggs

Green Beans

Crescent Rolls

Pumpkin Pie

Who knows how far I will get into the meal before my body reminds me that I’m breaking the rules and that I can’t eat all of this stuff. The fullness filling will be tough so eating small portions of everything is the trick. It’s not a good idea to be eating all of this but……………………

I did receive a call from my gastroenterologist last week about my pacemaker. They asked me if I was sure about my decision to go forward with the surgery. The pacemaker has a fifty-fifty chance of working and of course with surgery there are always risks. With cutting into the stomach, there is the possibility of making my Gastroparesis worse but there is the hope of the pacemaker working and bring some motility to my stomach and hopefully colon (I’m questioning this one). I told them that I still wanted to go forward with the surgery since this was my last option that we knew of. They said that would hand my case off to the lawyer who worked Medtronic, the manufacturer of the pacemaker. The lawyer would handle getting my pacemaker approved by my two insurance companies. I was so relieved and excited.

To add the cherry on top, I leave a week from Tuesday to go to Temple University Hospital to see Dr. Parkman. Hopefully he will have a helpful insight on how to manage my GP.

Saturday, November 13, 2010

A Three Year Anniversary

In a couple of weeks from now marks my dad’s three year cancer anniversary. That day is burned into my brain, as if someone literally branded me; it’s there, crystal clear.

Growing up, I’ve always a daddy’s girl, that’s just how it is. My dad is a hard, honest worker. He is the type of person that will help you whenever you need it. He’d give you the shirt off of his back. He had always been healthy. What could ever go wrong? One day I heard that my dad was going to have a routine colonoscopy because of some blood, it was probably nothing. After all, my dad travels all across the country for a living so his digestive tract hasn’t had the easiest diet to digest over the years. Again, it was nothing. We all joke around in my family; after all, laughter is the best medicine they say. Watching him go through the colonoscopy prep would be interesting to say the least. Who wants to drink half of the ocean in a jug of Golytely Prep solution?

The next morning we all said goodbye and went our separate ways. That Friday around lunch time, our lives were forever changed as a family. My mom called me at work (I was currently work as a pharmacy technician) and told me that they had found a mass in my dad’s colon; they believed it to be cancer. They were doing a biopsy to confirm. She went through the details and tried to calm me down. How could this happen to MY dad? What had HE done to deserve this? The rest of the day at work was a blur. Another co-worker came in complaining and I blessed her out. To this day, she is one of my closest friends but what did she have to complain about, homework? My dad mostly likely had cancer and next week was Thanksgiving. What in this world did I have to be thankful for?

That night the whole “cancer scene” took place. Nothing felt real. People started calling asking questions, what could they do, what was going to happen. I was a mess, my brother seem numb and my parents handled it was such grace. Tuesday the hospital called to confirm it was colon cancer. My mom called my dad and told him. He was out hunting and he took the news with such dignity and grace. I cried in the bathroom at work for at least twenty minutes. What if I he died?

My dad is such as a strong person. The day of surgery I never saw him give. That was the only time he has ever had surgery, he went down the hall to surgery giving high fives and peace signs. He handled his hospital time well. We are such opposites; he doesn’t like a lot of people in his room at a time. Me however, I love visitors. I’ll lay and start thinking about morbid things that could have took place in that bed that I’m in. Whenever he came home on Christmas Eve, I went to have his pain medication filled. The man had over a foot of his colon removed; he was going to need it for pain control. He never took a pill.

He had some issues with infection and had to have his incision reopened and packed twice daily. He basically healed from the inside out instead of healing from surgical stitches. He stayed out of work for a few months to get his chemotherapy started and to finish healing. He never complained. When the chemo burned his hands and feet, he kept working. In so many words he said that this was that life had given him and there wasn’t anything he could do about it. There wasn’t any reason to complain. His faith in God never wavered.

The past three years have flown by even though the first few months seemed like the days would never end and we were walking on a sheet of thin ice. I am so thankful that my dad is cancer free to this day.

Wednesday, October 27, 2010

Where do I go from here?

Where to begin?

The past couple of weeks have been eventful to say the least. I went to the dermatologist and told her I had lost a third of my hair, she immediately starts pulling chunks of hair out from various places. Hello?? I need that!! Luckily she did agree with me that I had a hair loss issue going on. The following Saturday, I gave in and got my hair cut. I had worked so long on growing my hair out and I just had it chopped off into layers. The negative side is I doubt I will ever get it to grow to that length again, the positive however is that my hair looks much thicker.

I started prepping on Monday, October 11th for the Sitz Marker test. The test involves swallowing a capsule that contains twenty-four to twenty-six rings that run your GI tract. During this time you are not to take any laxatives, I can’t function without them. I had to go a total of eleven days without any laxatives (a.k.a. no magnesium citrate). To recap, five days of prep and on the fifth day take the capsule. You then have to let this wonderful capsule run your GI tract for five days. On the fifth day, you go to the hospital for a series of x-rays to see if all of the rings have cleared your tract. A “normal person” will have zero to five rings left in their tract.

I had to endure another test call an anorectal manometry. Out of all the tests that I have been through, this was the worst. It wasn’t painful, it was just unpleasant and I couldn’t do parts do parts of it. When I was diagnosed with Gastroparesis, my dignity went out the window.

The last two days before the test were the worst. I stayed home from work and just stayed on the couch. I looked pregnant and it got to a point that almost every time I moved I hurt internally from being so full of food. I was telling Jacob and mom “Never again will I have this test!” Let’s be real here, I’ll probably have that test again in the next two years with how things go with me.

Thankfully Friday came and I stayed home from work to clean out, I was miserable. I had this feeling that two weeks of food and a bottle of magnesium citrate would make me feel horrible and probably take a while to work. It was Friday afternoon and I had been asleep in the recliner and I woke up in really bad pain. I thought to myself that it was just a cramp, it would go away but it never did. The pain kept intensifying so I had my brother call my mom. By the time she got home, I was regretting everything, who needs test results anyway?! I called and left a message for my doctor and then I got this “feeling”. I got up out of the recliner and slowly poked my way to the bathroom when I started getting hot and everything started going black. I made it to the bathroom and I was going down for the count. I could hardly hold myself up as I yelled for help. My mom, who is great in any situation walks in and takes over. Again, my dignity out the window as I’m sick passing out in the bathroom and there’s my mom “Oh, it’s okay.” You got to love your mom.

For the rest of the day that was pretty much the routine. Cramping, nausea, get out of the recliner-feel like you’re going to pass out. My doctor’s office did call back and tell me to come to the emergency room because I had some issues going on from the x-rays on Thursday and they would ease the pain but I was too sick to make it to the emergency room.

As for my test results, I received those today. The Sitz Marker test showed that I had twenty-six rings in my GI tract which my doctor said was not good. He said the anorectal manometry showed that my muscles were weak and I would need to do some physical therapy to maintain or possibly improve their capabilities. To make life a little more “interesting”, I now have Gastroparesis in my intestines and my colon. I have three organs that have paralysis. My doctor said that it was not a good situation. He said there was a possibility that I have an underlying auto immune disease/condition that is yet to be diagnosed but I am not ready to deal with that. He wants to do a breathing test to see what kinds of bacteria are lurking in my intestines and colon since the food tends to stay there for long periods of time.

So after the past few weeks, especially today, it would be so nice to be child again – no major health issues.

Sunday, October 10, 2010

Going to Philadelphia!

I have an appointment at Temple University Hospital in Philadelphia, Pennsylvania!! I am so excited. My appointment is December 1st. I could not believe I got in so quickly. I am going to see Dr. Henry Parkman. I feel so happy. No more worry, no more stress. I get to keep my gastroenterologist here in Winston who I love seeing and I am going to get to see this doctor for a second opinion. It’s the best of both worlds.