4/25/2011 Labs...again!

Things seem to be going a lot better for me right now.  I have not been feeling bad at all for several days.  I am still a little tired, but I guess that goes with not getting enough sleep because I stay up too late and I still got up at 8 am.  Besides which I don't really do enough exercise.  I went into town this morning for labs again.  I hate it when they stick me to get blood!  Although it is just one quick poke in the port, it seems to get more painful each time they do it.  Since I get that poke each week, I should be getting used to it, but it seems worse each time!  Today they asked me if I wanted them to spray me with cold this time.  I think next time I will ask them to try that so I would know if it is easier or not.  The nurse who poked me said that it would deaden the nerves so that I would feel the poke, but that it would burn later.  I guess I will have to try it next time to see if it is any better. 

I get to go back in Friday for a CT and at that time I will get poked again.  This is something that is required for the study I am on.  I guess they will do next week's labs then as well because I am not scheduled to go to the AIU until after I see the doctor next Monday even though that is my first stop before seeing the doctor before treatments usually.  It looks like next week, I see the doctor then go to AIU for treatment.  Hopefully all is well then!

4/19/2011 Pain is better, but still there

I started to post this yesterday and then forgot all about it so now I have to start over again.  AAARRRGGGHH!!!  I went to the doctor yesterday to find out why I had the problem I had last week with having stool coming out through my bladder since I have a colostomy.  It turns out that it can be explained by the fact that they made a loop in the stoma so that they can reverse the process if they are ever able to repair the fistula.  Apparently sometimes some of the stool can escape from the loop and go through the rest of the colon, but that should not be common.  That is a relief to know.  I was afraid they might have to cut me again in order for the problem to stop.  That is not the case.  PHEW!!! 

I have the car again, but I still have not gone anywhere during the day yet.  I will probably go into town again tomorrow to go shopping because I forgot to get any drinks to help when I have diarrhea (gatorade or similar).  I have two weeks to make enough food that I don't have to worry about it during my chemo week.  I made a soup/stew yesterday that had chicken, potatoes, carrots, celery, a little cauliflower, some onion and salt.  I will probably do another one in the next couple of days only using beef.  I like having a slow cooker because, although it takes a long time to cook using it, it sure beats anything I can get out of a can.  I just wish I knew more things I could make with it.

My pain is much better than it was last week, but now I am having some tingling in my fingers like what the doctor asked me about last week.  I have not really experienced this before so it really bothers me, but it is not totally unexpected.  I just wish that the lingering joint pain would go away!  That's all for now!

April 15, 2011 Oh the pain!!!

I woke up yesterday with very achy joints.  I was not able to do much, so I just sat around surfing the internet.  Today was not much better.  I hate these days!!!  It always happens 2-5 days after treatment.  My knees and ankles hurt so bad I want to cry!  Nothing I have tried seems to help! 

I made a soup with chicken and vegetables and ate on that yesterday and today.  It is really hard to get myself to eat right now or even to drink.  I'm having my brother bring me more gatorade tonight so that I don't dehydrate too bad since I haven't been eating or drinking properly these last few days.  At least I wasn't nauseous.  I just haven't been hungry.  I guess it doesn't help that I started having problems with the fistula again. 

I am trying to keep my spirits up right now, but it is hard when all I want to do is crawl into a hole and curl up!  I think I should go to the gym one of these days and see if I can get some kind of exercise in because if I don't I'm going to waste away.  Maybe tomorrow because I will have the car back tonight. 

April 13, 2011

Today started off a little slow.  Although I woke up around 8 am needing to use the bathroom, I went back to sleep until after 1 pm.  I didn't feel much like eating or anything else.  My joints started hurting today and while I took the anti-nausea medications, I still didn't feel up to doing anything. 

I think the worst part of what was going on today was that I started passing feces through my bladder again.  I thought the colostomy was supposed to prevent that.  I called the on-call gyn/onc to report this problem because it was after hours and I wouldn't be able to talk to my doctor at her clinic.  I was told not to worry about it tonight, but that they would try to get it checked out soon. 

I walked over to the convenience store and got something to drink, took some anti-nausea medications and some tylenol and I think I'm just going to try to sleep even though I only woke up at 1 and it is only 9:30 now.  I feel awful!!!  More tomorrow I hope.

April 12, 2011

I got home last night around 6pm and the lady was cleaning my room because she didn't have time to do it earlier in the day.  I had promised her several weeks ago that I would buy dinner or something for her because she had done my laundry for me when I couldn't do any lifting shortly after moving in to the motel.  When she finished my room, she ordered pizza and I paid for it and she came down as soon as it got there and we had a fine time.  I went ahead and took an anti-nausea pill when I got home because I wasn't sure if I was feeling queezy from not eating or from chemo  I had trouble sleeping because I had slept so much during the treatment earlier in the day.

Today I woke up feeling pretty well.  I went ahead and took one of the anti-nausea pills as a precaution because I didn't want to start feeling icky and the doctor had suggested taking one every 12 hours for two or three days after treatment.  I found there was a lot of hair on my pillow this morning so I guess it is a matter of time before all my hair is out.  I already miss my hair!

I went into my classroom to check on the final grade for my class and found out that the paper I had turned in got 100% so I have an A for the class.  I am so happy because I was sure that I was going to get a low score on that paper because I didn't put much effort into it at all.  In fact, I didn't put nearly enough effort into the whole class because of not feeling well for most of the six week session.

I went outside a couple of times today, mostly to get to the other buildings to get a drink and so I could get laundry money, to get mail from the office and to actually do the laundry.  I couldn't believe how nice it was outside today.  I wish there was someplace around here I could walk to without having to worry about traffic.  Better yet, I wish I had the car with me.  I was dropped off yesterday after my treatment because there was no way I could drive myself home.  It will probably be a few days before I will have the car again.

I have started wearing a scarf when I go outside now because my hair is starting to thin a lot, especially in the back.  I can't see it, but I can tell by the amount of hair on my pillow that it is coming out fast.  When I run my hand through it, lots of hair comes out too.  That is really scary to me, but not unexpected.  It is just a lot sooner than it happened the last time I went through this.  That's all for now.

Second Round of Chemo

Here we are, 4/11/2011.  I have been shedding for over a week and today I started wearing a scarf to protect my head from sunburn.  I still have a lot of hair, but I am told it is starting to thin very badly.
Soon it will all be gone.  My phone rang at 7 am because I had asked the front desk to give me a wake up call.  I was hesitant to take a shower because the last time I did I lost so much hair and this time wasn't any better.

I got to the cancer center a just before 8 am and checked in.  I went up to the AIU and they accessed my port and drew my labs.  I then went upstairs to see the doctor.  This time she did actually come in and see me.  There was nothing exciting that happened there so I won't go into great detail.  I was back in the AIU by 10 am.  It took a while to get everything together so it was after 11 am before they started the infusion.  As soon as they gave me the benedryl, I became extremely sleepy.  It was after 1pm before I was able to stay awake long enough to get anything done.  Today they did the drugs in a different order, with the Avistan going first, then the Taxol and now (4pm) they just started the carboplatin.  She said I should be out of here by 5pm.  I hope that I am able to get the medication refill before I leave.

I got the medication refilled (I pushed Bobby [the IV stand] down the hall and got it at the pharmacy.  My ride should be here in about 10 minutes and then I don't know if I will go straight home or if we will stop at the grocery store.  I won't have the car for a few days so I might need to stock up.  I will write more tomorrow.

First Round of Chem

March 21, 2011.  That was the beginning of my chemo life this time.  I went to the clinic about 8 in the morning and they accessed my port so they could draw the labs.  I don't know if I mentioned it before, but I had a port put in while I was in the hospital because I have very hard to find veins right now.  With a port, they don't have to look for a vein and it is a lot more convenient all the way around.  After they drew the labs, I went up to see the doctor.  That was somewhat uneventful.  I was out of there and back downstairs before the time I was scheduled to see the doctor at all.

I went back down to the AIU (Ambulatory Infusion Unit) and waited for them to get the drugs together to get me started.  After they gave me the benedryl, I became very sleepy so, although I had my laptop with me, a lot of the time I was too tired to do anything on it.  They had me on three chemotherapy drugs:  Carboplatin, Taxol (same as last time) and Avistan (new this time).  The Taxol took 3 hours to drip and the Avistan took about an hour and the Carboplatin took about half an hour.  Altogether, I was at the cancer center from 9 am to almost 6 pm.  That's like a full-time job!

Because I got done so late, the pharmacy was already closed so I wasn't able to get the nausea medications before I left.  That was a problem over the next two days because I did become nauseous until I got the medications.  As soon as I got them, I took some of each, but it took most of a day to stop the nausea.  The best thing to do, I find, is to take the medications BEFORE the nausea begins.  In fact, the doctor told me today to take the one pill every 12 hours starting tomorrow and take the others as needed.

About half way through the cycle (middle of week 2) I started having fevers.  I hadn't been feeling well and decided to take my temperature and it was 101!  I was told to call in if it ever got above 100.4 so I made a call.  All they could suggest was to take tylenol and drink gatorade.  By doing that the fever went down, but by the next morning it was back up again.  I went for labs in week 3 and they checked and found that I had a UTI.  I was put on antibiotics and I am almost finished with those.  Since I started on those, I haven't had a fever once.

I purchased a car last Sunday (4/3) and spent Monday getting labs done then I tried to get the car inspected on Tuesday so I could get it registered; but it didn't pass.  The shop said it would cost over $200 to fix, but the guy I bought it from did the job for $30 plus the part.  I was able to get that done last Friday and I took care of all the paperwork so now my car is totally legal!  That's all for this post!

The Big C Rears its Ugly Head

After over 7 years of thinking that it couldn't possibly happen again, the impossible happened.  This time, the problem was discovered because I was passing stool through my bladder.  At first, I didn't think anything about it because I thought maybe I wiped wrong or something; but when I wiped when I hadn't had a bowel movement and there was still stool on the paper, I knew something was wrong.  The biggest problem was that I was in China and I didn't have access to an English-speaking doctor.  I asked around at a foreigner's dinner (Christmas Eve of all days!) and there were no real suggestions.  On Christmas day, 2010, I mentioned it to my niece, she put the symptoms into the search engine and it came up right away: vaginal fistula.  Of course we called my boss right away and he got me to the hospital nearby.  They weren't able to do anything there so we went to the main hospital in the city.  We described what we found on the internet and all the doctors laughed and said "impossible".  It turns out that it wasn't a vaginal fistula, but I didn't find that out until later when I was examined in the US.


They ran a few tests that night and decided to have me admitted until they could run all the necessary tests to determine what the problem was.  That hospital stay was really a unique experience for me because it was so different from being in an American hospital.  The first thing was, you had to pay upfront for everything.  Before they would examine me in the emergency room, my boss had to pay a fee, even though my school had required that I purchase insurance at the beginning of the school year.  When they decided that I needed to be admitted, he paid 3000 RMB (a little over $400USD).  Each morning, I received a statement telling me how much of that had already been spent.  On the third day, my statement said that my balance had been used up.  Fortunately, the doctors also told me that I didn't need to be there any more as there was nothing else they could do for me.  They told me that I had colon cancer.  I kept telling them "no way".  I told this to my brother and he talked to doctors in the US and was told that colon cancer was slow growing and that there was no way that it could be that since I was given a clean bill of health before I left the states in August.  Be we decided that the best thing I could do was to return to the states for treatment.  My brother made reservations for me to fly on Jan 2 (two days to prepare).  I made arrangements with my co-teacher to take over my final exams and prepared to leave my job.

I arrived at the airport in St. Louis on January 2 in the evening.  After a 15 hour flight, I just wanted to sleep.  But the first stop that my brother decided to make was at the emergency room at the University Hospital in Columbia, MO.  He had talked to doctors there about my situation while I was still in China.  He was sure they would admit me right away.  After sitting in the exam room for a while, they sent me for a CT scan.  This was a lot more comfortable that the one I had in China a week earlier because the whole building was heated (when they took me from my room for the scan in China, they had to put my winter coat on even though we didn't go outside!).  Once they got the results back from that, they sent me home and set me up to meet someone in the surgery clinic the following week.  They said my condition was not life-threatening and there was no reason for me to go into the hospital.  Since I had no place to go, my brother checked me into the Regency.  I stayed there until I was admitted to the hospital on January 12.  I was only supposed to get a colonoscopy that day, but it turned out that I was all blocked up down there so they admitted me.  As soon as they got me into the room, they put a tube in my nose.  That was in place until after surgery when they figured it would be safe for me to eat again.

I was taken into surgery January 14.  I was told that they were going to take out a portion of my colon and a portion of my bladder in order to fix the fistula and that they would do a colostomy to ally my colon to heal following the procedure.  They also gave me an epidural which would allow me to be relatively pain free.  That was a life saver for me because it was the first time that I was able to walk in the time they wanted me to do so following the surgery and I didn't get pneumonia!  But they told me they couldn't do the repair because they found too much cancer in my colon.  They also found it on my liver and diaphragm.  It was a recurrence of my previous cancer, not a first time occurrence of colon cancer like the doctors in China had led me to believe.

A week after surgery, they had me off the epidural, I no longer had the catheter, I was eating regular food, and physically there was no reason for me to remain in the hospital.  Only problem was I had no place to go, so they kept me there.  It was January 26 when I finally checked out (two weeks after I was admitted) and I checked into the motel where I am still staying.

Dancing with NED (No Evidence of Disease)

I had made it through six rounds of chemotherapy with carboplatin and taxol.  I had been out of work from mid-September to about mid-February and I was going crazy!  It was nice to have the freedom to do volunteer work for the Red Cross whenever I wanted to, but I wanted to get back into being productive!  Three weeks after my last chemo session, I was told I was cancer free!!!

For the first two years after treatment, I was checked out every three months.  After that, I was checked every six months for another two years.  I was supposed to be checked out once a year after that, but it didn't always happen.  For example, when I went to China in September 2006 to teach English, I didn't get checked before I left.  I did go to the point of asking the hospital (through a translator) to do a CT and a CA-125 test and it appeared that all was well in the spring of 2007.  I didn't get checked again until the following year when I had returned to the states for another problem.

I would like to go into a little detail about my trip to China because it was an important event in my life.  I took a job teaching English at Beijing Normal University in Zhuhai.  I was teaching non-English majors, but I was making better money by comparison than I had ever made in the states.  I had a free apartment so I only had to pay for food and electricity.  In 2007, I moved to Meizhou, a city about 600 KM away from there, but still in Guangdong Province.  I taught at JiaYing University and was teaching English majors at this time.  This was far more rewarding for me because the students actually wanted to learn English.  The money wasn't quite as good, but for the hours I worked it was not bad.  I had to cut that year a little short because of medical problems.

I returned to the states in May of 2008 due to stress and some abdominal problems.  I went to the doctor soon after returning and found out I had an incisional hernia.  I was looking at another surgery.  It had been five years since the hysterectomy and I was tired of holding my side all the time.  My brother thought it was strange that I was always doing that.  It turned out that they had to cut me on the same incision because the whole thing had apparently herniated.  This time, not only was I in the hospital for a week due to pneumonia, but by the end of that week, I was still not able to walk the hall easily so they transferred me to a rehab center.  They didn't want me going home because I was living alone in a third floor apartment without any elevator.

While I was in the rehab center, they tried to get me up and walking more than I had been.  It was hard at first because of the pain, but also because I was still on oxygen and it was hard to push around the tank when they wanted to have me walk.  It got to the point where they got a wheelchair that could hold the tank while I was pushing it and if I got tired, I could be pushed back.  That was a miserable time for me because they only got me into physical therapy a couple of times a week so it was not very productive most of the time.  I was eventually able to climb a flight of stairs and that was a pre-requisite to them letting me go home.  I was using a walker most of the time, but I stayed in my room more than wandering around because of the oxygen tank.  If I tried to go without the oxygen, my level would go down to a point where they worried about me.  I was sent home with the oxygen and a company brought equipment to my apartment so that I could be free from a tank unless I went outside.  Being tied to a machine, even with a 50 foot tube was a pain, but I guess it was better than carrying a tank around all day.  Eventually, they got me the smaller tank that I could wear on my back, but shortly after that, they told me to stop using it because the drop in level when I was off it wasn't enough to warrant continuing to use it.  During the time I was in Arizona, I was also rechecked for cancer and all was well at that time.

I moved to Missouri in January 2009.  I know I had my CA-125 checked while I was here, but I don't think I ever got a CT because I couldn't afford it.  I wasn't able to find any jobs most of the time I was here (I had two temporary jobs lasting maybe a month or two each).  Finally after a year and a half, I decided to return to China.  This time I took a job in Yancheng, Jiangsu Province, about 5 hours from Shanghai.  I went there in September 2010 and was there until December.  But that is another chapter.