Wednesday, October 29, 2008

Radioactive Eggs and Bald Heads

Yesterday was an exciting day. It started with going in for a gastric empting study to measure how fast food is going through my stomach to see if that is contributing to my nausea.

I had to fast for 6 hours which was not a big deal since it was first thing in the morning. Then I had to eat a hard boiled egg that had been somehow infused with radioactive material. This was a little tougher since I was already nauseous. They gave me gloves to handle it and was told to be careful not to get any on the floor or counter. It is kind of scary to be given something to eat that is dangerous to handle.
Then I went into the nuclear medicine room where I laid on a table that had what looked like a scanner above me. The cool thing is they had a computer screen that you could see where the egg was in my stomach (it glowed) and over the 90 minutes I could see it moved through my stomach into my intestines. It was cool and creepy all in one.

I decided on Monday that it was time to shave my head. I did not think I would have a hard time losing my hair this time since I went through it before and I did not really like my short hair, but once it started to fall out it was a different story. It was very hard to see hair on my bed pillow, bathroom floor and on my desk. So yesterday after lunch I went to the barber and got it shaved. It was very cathartic and empowering to take control of the situation. It is a little cold out, but I am just back to wearing my hats - all in all a very busy and exciting day.

Monday, October 27, 2008

Time is flying by

I have been very bad about updating my blog lately. There has been so much going on, I have just not found the time to write anything. There is also the fact I have not been sure what to say.

In the last blog entry I talked about how I was struggling with the decision to start treatment and with the knowledge the tumors have grown. I have since decided to go on chemo. I have committed to one month of treatment and will then re-evaluate after tests are performed. I am also seeking a second opinion during this time. I started an oral chemo 3 weeks ago that I take twice a day and I am receiving a infusion cocktail of four chemo drugs every Friday (3-4 weeks on, one week off. They would like to give me 6 cycles of the infusions which would be about 6 months and at least 2 months of the oral chemo.

The last two weekends have not been any fun and I know it will only get worse as the treatments go on. That is one of the reason I am not sure it I want to continue treatment if we do show positive results. The quality of life is just so compromised.

As many of you know I am having trouble with my stomach and it is not just chemo related. I went to the doctor last week and he is running another round of tests to see if we can get to the bottom of this. They think there is damage to the stomach from chemo and radiation but they are not sure and if there is they want to find out how much. I had an ultrasound on Saturday and go in for a gastric emptying study tomorrow and endoscopy next week. The gastric emptying study measures how fast food is moving through my stomach. I will find out more tomorrow what all is involved but from what I know I will eat radioactive eggs and they will take pictures as it is moving through my stomach. I have had more radioactive stuff in the last month I am surprised I am not glowing.

My hair is starting to fall out again. Everyone has been complimenting on it. Saying how cute it is. I hate it. I guess I just do not identify myself with short hair and it takes a lot of work. That said it is very frustrating that every time I run my hand through my hair I get a clump on hair and I found hair on my pillow this morning. I am going to go ahead and have it shaved. I can not take it slowly falling out again. I have an appointment at a local cancer center where stylists come in, but it is not until next week and there is no way I will be able to wait that long. I think I will just go to the hair cuttery tomorrow.

On a good note, last night was the Screw Cancer event. It was a fundraiser for the Ulman Cancer Fund and it was an awesome event. It was nice to see so many people and many of my friends and supporters attended. There were many silent auction items and my friends had a good time bidding. The awesome part is that every item my friends won they gave to me. I am still amazed how generous my friends are.

Work is going great. It is such a rewarding job. No matter how bad a day I have I find I can help someone and that makes feel like I have a purpose. Two weeks ago I had a plumbing problem and then my tooth started hurting (needed a root canal) and I had my first chemo infusion that day. When I came into work I felt like I was going to crying, I could just not handle anything else that day. I received a phone call from a woman whose son was just diagnosed with colon cancer that had spread to his liver. She just needed someone to listen to her and to help find resources for them. I hung up the phone 25 minutes later and knew that that was the reason I was alive that day – to help someone else. I have had several other moments like those lately and it is such a good feeling.

Tuesday, October 7, 2008

Just another week

Sorry I have not updated the blog in over a week. It was a busy week with lots of ups and downs. Actually there were a lot of downs, but few ups. Last week the nausea and vomiting got worse. I went to the doctor on Tuesday to check on my incision as well as the oncologist. The surgeon was worried that there was a bowel obstruction of loop of bowel caught in the incision in the abdominal wall. So on Wednesday I had to go back to GBMC for blood work and CT scan. The upside was I did not have to drink barium for this CT, but I did have to drink the vial lemonade flavored contrast shit. Unfortunately the vomiting reared its ugly head and caused me to vomit the first of the contrast. Luckily they did not make me drink the other 2 glasses of it and went ahead with the scan.

On Wednesday night the vomiting continued to get worse and I could tell that I was very dehydrated. After a very rough night I called the doc at 6:30 in the morning and he told me to come into the office and he would most likely admit me for IV fluids.

Thursday around noon I was admitted to the hospital for dehydration and for them to run more tests to see why I could not keep even fluids down. The CT scan and blood work came back normal, at least normal for a cancer patient.

They started me on some pretty strong anti-nausea drugs. The days in the hospital were fairly uneventful. I had a nuclear scan on Friday morning which showed a very normal gall bladder. At least something is my body is normal. Friday they started me on a liquid diet which did not work, but Saturday things improved and I was able to go home on Sunday afternoon.

After being seen by 10 different doctors, residents and interns the diagnosis is chronic peristalsis where as the stomach is not moving the food through very well. It is their speculation that the chemo and radiation has caused damage to the stomach. I am now taking anti-nausea meds before each meal and at bedtime. Mornings are the toughest and when I feel the worst. I have been getting up to take the Reglan then go back to bed for another hour while the meds go through my system.

When I visited the oncologist last week we talked about my treatment plan and my prognosis. We talked about why they put me on Estrogen (by the way the hot flashes are gone). The doctor said they usually do not put cancer patients on Estrogen, but since my prognosis is not good they want me to be comfortable. The doctor said I may have as little as a year to live. Not surprisingly the news did not go over well and I kind of shut down emotionally. I talked to the oncologist yesterday and we discussed my treatment options and what my prognosis would be if I did not do treatment. The good news is I am allowed to go back on the oral chemo starting next week. They also want to start infusion chemo once every three weeks. I have not decided if I am going to do the infusion chemo. It makes me so sick last year and really affects my quality of life. Yesterday the doctor said that if I do not do any treatment I may only have 3-4 months.

It is not like me to take this sitting down and not fight; I am just not sure how much fight I have left. I have committed to the oral chemo for six weeks and take things from there.

I feel bad that I have not been able to work much, but everyone has been great letting me set my own schedule and work from home. My new friends there are also encouraging me to get a second or third opinion. I am feeling pretty emotional these days and have been crying a lot. I feel like so much of this is out of my control and it is very frustrating. I am happy I have a treatment plan for the next couple of weeks.