Although this isn't the best picture in the world, it does show how I look now.  I am currently in treatment using temoxefen (not sure of spelling) and I find that I hurt a lot less.  I hope it is effective so I don't have to go into chemo again.  I will see in another two weeks.

My new website

I have just created a new website through MyLifeLine and that supports cancer survivors.  Feel free to check out the site.  It is a work in progress, but there are a series of pictures showing how I have changed over the last six months as well as having information provided by the Ovarian Cancer National Alliance.  Come by and sign my guestbook and learn more!  https://www.mylifeline.org/daeckardt/?page=welcome.cfm

Life goes on...

It has been three months since my last chemo session.  I thought everything was going well at first, but seven weeks ago, my numbers (ca-125, the cancer tumor marker) started going up.  At that time it had only gone up by 10 points and it was "wait and see".  They did another test last Monday and it had gone from 41 to 79.  When the doctor gave me that information, she told me that any time it doubles from the lowest point she becomes concerned.  Now I am scheduled for a CT scan next Tuesday and to get the results on Wednesday, but when I went to pick up the contrast they told me the insurance may require me to wait for an additional day. That would not be good because my doctor only has clinics on Monday and Wednesday but I will do whatever I have to.  I just hope that the necessary treatment is not too bad because I have already been through so much. But I look at it this way...When life gives you lemons, make lemonade.  I'm just tired of all the lemons I have been getting.

Possible problem

I got a call today from the nurse in my doctor's office.  It turns out that I have another bladder infection because of the fistula so I am on yet another round of antibiotics.  But to make matters worse, I got the results of the ca-125 they did on Monday and the numbers are going up again.  That is scary because I am just starting to get my hair back and there is a possibility that they will want to start me on chemo again.  I really hope that is not the case, but I will have to wait and see.  They will have me get another test on September 19 and then I will have a better idea.  I know that no matter what happens that I am strong and I will get through it.  That's all for now.

Update 8/11/11

I have been doing great lately, but I got one little piece of bad news.  It isn't all that bad, but it looks like the colostomy is going to be permanent.  I saw my gyn/onc on Monday and she told me that it looks like the only way they will be able to prevent any further bladder infections will be to remove the loop on the colostomy which would make it an end colostomy which would never be able to be reversed.  The other option to that would be a major operation that would remove a lot of my intestines and bladder and that would be far worse I think.  I have lived with this thing for this long, I guess I can live with it for the rest of my life.

I have started doing more things lately.  I have become active with the Red Cross disaster services again.  I hadn't done that since before I left North Carolina in 2006 and I really missed it.  I am working on trying to get the Columbia office resources up to par so that if we have to send people to a hotel or to get services we will have a list of places that will work with us.  Right now, there are no agreements with places that would be willing to help us to provide housing to our clients that have been burned out of their homes.  This project will give me a definite purpose so that I have a reason (or another reason) to feel good about myself.

My hair is coming back!!!

I have been done with chemo for about 2 months now and my hair is starting to come back.  I have been feeling much better since I started going into the pool about three weeks ago.  I have much more energy now than I had during my treatments and I am starting to get into shape.  I also started volunteering with the Red Cross recently since my previous experience with them gives the local chapter here some insights into things that they didn't know about.

I'm done with chemo!

This post is a little late.  I actually finished chemo about four weeks ago now.  I was told two weeks ago that I didn't have to go through round 6 because my last two CA-125s were normal which basically means I am considered to be cancer free.  Instead of doing chemo last week, they did the CT scan that was supposed to be done after round 6.  I was really excited that they were going to keep me on the Avastin study, but then I got the CT results.  It showed there was a cyst on top of my bladder and there was ambient air in my abdomen.  I am now scheduled for another CT with an interventional radiologist to see if they can drain the cyst.  He was doing the extra CT to see if it has grown at all or to see if they can get a better position so they can access it.  If not, I guess I will be on antibiotics for as long as it takes for it to go away on its own.  And because they found the air in my abdomen, they took me off the study since perforations of the bowel are one of the possible side effects of the study drug.  Oh well...

6/16 update: chemo round 5

Well, I made it to another day, but it didn't go as expected.  I got here and I was in the computer as being expected, but somehow, I hadn't been added to the chemo schedule so they had to call in a nurse four hours early to be in the room with me during the densitization.

I got to the hospital at about 10 am or so, but since they weren't expecting me for chemo, the pharmacy didn't have everything that was needed so we had to wait until 1pm before they could get me started.  Everything went as expected during the first half of the treatment and it was ok through the first bag of the carboplatin.  About 2/3 way through the second bag of carbo, I started itching and I showed it to the nurse that was with me.  About 5 minutes later she decided to turn it off.  She had the other chemo nurse come in so she could call the doctor for instructions.  The other nurse started the procedures for handling the reaction (more benedryl and steroid).  Less than an hour later the reaction was gone, but the word came back from the doctor that there would be no more carbo given ever.  If I reacted to 5.66 mg of it, there was no way to use it at all.

I talked to the doctor this morning when she came through and she didn't know if I would be allowed to continue on the study since the carbo was part of it, but if they try to kick me off of it she was going to talk to them to try to convince them that since I had received it 4/6 of my treatments that not having it for the last one shouldn't affect the study results.  Even if they don't continue me, she is still considering keeping me on the avistan because it showed good results on studies for first time occurrences and the purpose of this study was to see if it helps on recurrences.  I really do hope that they let me continue!

I just got my discharge papers and finished my lunch so now I just need to pack up this machine and get ready to go home. 

June 7 Update

I thought things were a bit strange over the last week or so.  Over the weekend following the last chemo session, I slept almost the entire day.  I didn't eat or drink much so I became extremely dehydrated.  I went in on Wednesday last week to get my labs drawn and mentioned to them I was feeling a bit light-headed.  I got a call from the nurse the next day telling me that I was "dry".  They told me to come into Ellis on Friday to receive some IV fluids to rehydrate me.  I got one liter of fluids and had planned to wait until the results came back before I left in case I needed more.  After almost an hour, the nurse said that I didn't need to worry about it and she de-accessed the port and sent me home.

About 15 minutes after my brother dropped me off, I got a call from the nurse in my doctor's office telling me that I needed to go to women's and children's hospital to get a blood transfusion.  If it had been earlier in the day, I might have been able to get it done at Ellis, but since it was already after 3pm, there was no way it could be done there.  I left a message for my brother to come back and get me and the fun all began again.  He had just got home from dropping me off (he lives 10 miles from me) so he had to come back out and get me and drive me back into town.  He dropped me off at the hospital around 4:30 and I went into the check-in desk and they had no information on why I was there so they told me to go wait until they got my information.  They finally got me checked in about 5pm.

After doing the paperwork, they sent for someone to wheel me up to my assigned room.  Because they had already de-accessed my port, it meant that they had to stick me again in order to even draw blood to do they type and cross-match so I was given the choice of doing the stick with numbing (which would have delayed everything by an hour) or doing it without so they could get started right away.  I went ahead and did it without because I had already been delayed this long.  It really didn't hurt as bad as it had been the last several times that they had done it without the cold spray, but the hospital didn't use the cold spray.  Oh well...

Once they got the blood drawn, they hooked me up to another liter of fluid that they put in twice as fast as they put the first one in at Ellis.  After an hour, they hooked up another bag that they had running all night.  Around 8pm the hooked up the first pint of blood and about 2 hours later they hooked up the second.  All the blood was in by midnight and I was actually allowed to sleep until they came and drew blood from my port for labs.  I think as far as sleeping in a hospital, that was the best night sleep I had ever had since they didn't need to keep poking me every time they needed blood or something.

I went home around noon on Saturday, but I still didn't feel totally great.  I'm still afraid to drive the car because there are still times I feel light-headed.  I just hope that things start getting better or I may need to move closer to town sooner than I had hoped to.  More to come later!

One long day!!!

I knew it was going to be a long day, but when I got up at 5:45 in the morning, I had no idea just how long!  I was picked up at 6:30 by the transportation company to get me to the cancer center by 7:15 and half way there there was the sound of a tire going flat.  The driver kept going until we got to the freeway exit and got to a parking lot.  By that time, the tire was totally gone!  They brought another car to get me the rest of the way to the cancer center (even though I was only a block away) and I still got there before 7am.  Fortunately, the doors were open.  I had to wait for the people to open the check-in desk, but at least I was dry and warm. 

I got up to the infusion unit and waited...and waited...and waited...after about 8am, the nurse came in and said they would be moving me to the hospital because there was no way that the treatment could be completed in the time that the center would be open.  So I went down and got a voucher from social services for the transfer and went to the hospital.  That was not a very comfortable place.  I didn't know any of the staff and I was used to the way things were at the cancer center.  Once again I waited...and I waited...and I had to wait for the orders to get transmitted to the hospital and the orders to be filled.  It was almost noon before they even started the pre-meds!  At least I did get two hot meals out of the ordeal.

Things wen pretty smoothly once it got started.  The beginning part was the same as always...pre-meds, avistan, taxol (about 4-5 hours there).  Then they had to do another round of pre-meds to make sure that I didn't react to the carbo.  That was where the time started changing.  They had it divided into four bags.  The first bag had .056% of the drug that was infused over an hour.  The second bag had .56% infused over another hour.  The third bag had 5.6% infused over an hour and the fourth bag had 56% infused over 3 hours!  It was after 2am before they finished with me so they let me sleep for a couple of hours and I went home at 6am (a full 24 hours after I left home!!!). 

I talked to the study coordinator to see what the schedule will be the rest of the time and she told me that they would be doing the desensitization for the rest of the treatments.  But she said that they would be done at a different location because she was not pleased with the way they handled things at that hospital.  She will be giving me all information when I go in on Wednesday for labs.  At least that will still be done at the cancer center even though I will be going to the hospital for actual treatments.  I just hope that it goes better next time than it did this time!!!

Time for another treatment

This has been an awful three weeks.  Not only did I have an allergic reaction during my last chemo treatment, but a week later my nephew was killed in a motorcycle accident in Thailand.  I have had fevers off and on during the entire time and a lot more aches and pains than I normally have.  I have survived, but I don't know how.  My brother made the trip to Thailand to recover his son and I had to help with that.

Normally, I would have treatments on Monday, but this week they changed it to Wednesday because they don't have enough staff on Mondays to keep someone one-on-one with me.  They have to do that because they are going to try to desensitize me to the carboplatin (the one I had a reaction to) to make sure I don't have another allergic reaction.  Normally it takes about 30-45 minutes to infuse that one and this time they will be doing it over 6-8 hours.  That is in addition to the 3 hours for the taxol and another half an hour or so for the avistan and more time for the pre-meds.  I don't know how they will fit it all in between 7:15am and 5pm.  It's a good thing they left the port accessed after they drew the labs today.  I will let you know how that all goes tomorrow. 

Another week gone by..,.

Hi everyone,

I have had a hard time of it this past week.  I'm doing ok overall, but my stomach has been giving me a little trouble.  I guess that is what the anti-nausea medications are for, but usually by the time a week has past since treatment, there is no problem.  Today, I don't feel like eating and I haven't eaten very much today.  I was hoping to have a good lunch, but it just isn't going to happen.  I still have some joint pains, but it isn't as bad as it has been in the past.  I guess I am just getting used to it.  I think numbness is more a problem, especially when I am trying to open some kind of package.  Life is treating me well and I hope that I can continue to do more things as time goes by.

Today, I went to the Activity and Recreation Center (ARC) and walked laps and spent some time on one of the bikes that works the arms.  I really think that I need to get more time working out so that I don't waste away.  Already, I feel like I have aged and it scares me.  Maybe now I look my age instead of 10 years (or more) younger than I really am.  I shouldn't complain because it is good to look young, but it is frustrating when you are close to 50 and people tell you they think you are under 30.  I talked to one old lady and she told me about a fitness class that might do what I'm hoping to accomplish.  I was really surprised when she told me she was 72 because she looked so young.  I hope that I look that well when I get to be that age.  Note that I said when.  I don't plan to give up even if the going gets tough.  I guess I will wait and see what the future holds in store for me.

5/3/201 CT scan/Chemo 3/ alergic reaction/hospital stay

Hi everyone,

A lot has happened in the last week. I had a pain free week last week, but since I had a CT scan last Friday I had to take the contrast Thursday night.  The instructions said to take at bedtime.  Ordinarily that would not be a problem, but since I have a colostomy, I had a serious problem four hours after drinking it.  I had a two-piece appliance on and I didn't wake up when it became full.  When I did wake up at 4am, the bag popped off the phlange holding it to my body and I got sh-t all over me and my bed.  I took my dirty clothes off when I got in the bathroom and walked around like that until after I took a shower and put on a new ostomy appliance.  That was so embarrassing!  I got the CT done and had similar filling of the bag 4 hours after drinking the contrast again but since I was awake, I was able to empty the bag before it became a problem.

On Monday, I saw my gyn/onc and she told me there was "no measurable disease" on the CT.  The good thing about that is that it means that the tumors they saw during the surgery did not grow.  She also told me the CA-125 was decreasing.  It started out above 100 before treatment and was at 40 after the first treatment and was down to 30 on the labs performed last week.  As long as it continues to go down that will be good.  I got down to the AIU around 10am, but it took them until almost noon to get the pre-medications to me and it was really slow getting the rest of themto me as well.  I did ok most of the time, but when they finished with the last medication, I had a severe reaction to it.  It was really scary the way the staff reacted.  They brought in a doctor to deal with the reaction and they gave me some stuff to reduce the reaction and had me taken by ambulance to the hospital.  I was kept overnight for observation and now I am waiting for the discharge orders.

I got to the hospital and the information on getting me admitted go to the hospital, but not to the emergency room.  They weren't expecting me, but at least they didn't turn me away.  They got word on my right before they knew what room I would be in.  When I got there, my arms and face were all red and splotchy, but by two hours after the redness started, it was all back to normal.  My gyn/onc came through a few minutes ago and said that they would be calling a prescription that will help me come off the steroids they gave me to deal with the reaction.  I will pick that up when I go to pick up my shoes that they didn't find until after I left by ambulance yesterday.  Life really sucks.  At least the joint pain and nausea haven't started yet.  I hope they give me a break this week because I am so tired of dealing with that.  One thing the doctor said was that this kind of reaction doesn't happen with carboplatin after the first round of treatments, but usually after two or three treatments of the first recurrence there will be a reaction.  She needs to check with the study protocol of what to do about the reaction.  She says there are three possibilities:  1.They can do a desensitization where they give me the drug in smaller amounts at a time to get me used to it again or 2.they can change me to cisplatin which is a "cousin drug" or 3.they can drop it all together.  She said she would let me know before the next treatment.  This is a much nicer hospital than the university hospital was.  All the rooms are private and they all have their own shower which is really nice since there was only one shower room on the wing I was on and the nurse had to schedule times for such things so I only got maybe 2 showers for the 10 days I was there.  I haven't taken a shower here, but it is good to know that it is available.  My nurse just came in and said I would probably be out of here by noon.  That's all for now folks!

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.

First Chemotherapy (6 rounds, once every 3-4 weeks)

About a week after I left the hospital, I had to go in and get the staples removed.  I couldn't believe how much easier it was to sleep after that was done!  The doctors also discussed the treatment options to ensure that all the cancer cells were killed.  It was decided that I would start chemotherapy in about three weeks which would allow my body enough time to heal before bombarding it with the chemicals that would hopefully leave me cancer free for the rest of my life.


When I went to the clinic for the checkup, I was using the walker still because it was still difficult for me to walk upright without it.  This was embarrassing for me since I was only 43 at the time and I thought only old people had to use those contraptions, but I guess it was better than depending on a wheelchair.  Some of the other thoughts that were going through my head at this time included:  "Why me?", "It can't happen to me because I'm too young!", "What did I do wrong?" and similar thoughts.

I got my hair cut short a few days before my first chemotherapy session thinking that I didn't want my long hair falling out all over the place.  It was cut short, but not shaved.  I don't think I could get myself to shave my head even though I knew eventually I would be bald anyway.  I had several people trying to talk me into buying a wig and others telling me I didn't want to do that.  In the end, I decided to go with hats and scarves because it was less...pretentious.  I think if I was teaching or something I would have thought differently, but my doctor wouldn't even let me work while I was in treatment.

On the day of my first treatment, one of my coworkers took the day off work (I think he was off for the whole week, actually) and he and his wife drove me to the hospital and spent the whole day with me.  They made sure that I had everything I needed for the whole day!  The whole thing took over 5 hours and on the way home, they were worried that I would be sick because the last person they had know who had gone through chemo was sick all the time.  Fortunately, there were some very good anti-nausea medications by this time.  This was some time in October.

I had to go in every week to get blood drawn so they could make sure that my counts were not too low.  I know one of the treatments was scheduled to fall the week of Thanksgiving and they let me wait a week on that one so that I would be able to enjoy the holiday.  Unfortunately, they didn't let me do the same thing the week of Christmas.  It was about this time that I finally started losing my hair (after the third treatment). 

My life was a pretty dull routine during this period.  On the days that I went for my blood draws, I drove myself around.  After I left the lab, I would go to visit my two employers so they would know I hadn't forgotten about them.  First I would go to the grocery store (my part time job) and then I would go to my full time job.  On these visits, I always wore a mask because my sister-in-law was worried about me catching a cold from someone I encountered.  Once I left there, I went to the Red Cross where I was a volunteer with disaster services.  I would spend time there helping catch up some of the paperwork that was backlogged.  I was never able to do that when I was working 60 hours a week so I loved the fact that I could go there a couple of hours a day sometimes. 

I remember the day that I was at the doctor and they said my hair was coming back.  This was a couple of weeks after the last chemo session.  I thought it was the last remnants of my old hair because I was never totally bald.  I couldn't believe how soft it was--like a new born baby.  If you shave your head and it grows back it feels stubbly; but if your hair falls out from chemotherapy, it comes in soft.  It was a great feeling!  By the time it started warming up, I had enough hair that I didn't feel a need to continue to wear a head cover of any kind.  I did look like a boy/man because my hair was so short, but that was ok! It just meant that I didn't need a comb.

In the fall, I was sent to Western North Carolina with the Red Cross to help with the flooding caused by one of the hurricanes that year.  When I was in the hotel, I finally had to ask them for a comb because my hair was starting to grow a little bit!  I hadn't needed a comb in about 8 months!  I was finally getting back to normal!

One thing I forgot to mention about my full time employer.  I could have been over 4 months without income because I only had about 200 hours of leave accumulated.  Between my coworkers and some friends in another department, over 500 hours of leave was DONATED to me!  I got my full pay the whole time I was out of work.  During the last month before returning to work full time, they allowed me to work 20 hours a week (only 4 hours a day and they gave me a 30 minute break after 2 hours).  I didn't tell them that I was also working at the grocery store on the weekends, but I did.  It felt really good to get back into earning again!

Initial Surgery and Hospital Stay and First Days Home

I was admitted to Duke University Hospital on Wednesday September 13, 2003, knowing only that I had a large tumor in my abdomen and not know exactly how serious the situation was.  My brother dropped me off in front of the hospital on his way to work.  I had to negotiate the halls of the hospital on my own to find the surgery check in area.  Because no one was with me, they put my personal belongings into a locker to be recovered when I was able to.  My doctor came by to check on me and to let me know what to expect.  I was then put under anesthesia. 

When I woke up, not only did I feel very groggy, but I was very painful.  I had been cut from above my belly button to my pubic bone in order for the surgeon to be able to remove all parts of the tumor as well as taking out the lymph nodes and anything else that could have possibly been affected by the cancer.  They also removed all fluids from my belly.  I was told that I would be in the hospital until I was able to start passing gas and eating regular food.  They insisted that I needed to start getting up and walking right away.  I know that would have been helpful in my recovery, but I was hardly able to stand up, let alone walk the length of the hall like they wanted me too.  They also wanted me to cough and breathe into the machine to build up my lungs, but doing so was painful so I didn't do it.

Because I didn't get up walking or do the breathing exercises, I wound up getting pneumonia.  I have never been a great fan of pain so whenever I was in pain, I wasn't able to do anything.  After what was supposed to be a 3 day hospital stay (which wound up being 8 days), I was released to go to my brother's house.  I had a room on the second floor so I had to negotiate the steps any time I needed to go to appointments.  I was able to stay on the second floor if I didn't need to go anywhere, but I had to use a walker even to walk up and down the hall because I couldn't stand up straight without it.  But the excitement was just beginning...

Initial Diagnosis

It all started with having trouble buttoning my pants.  This was the summer of 2003.  I didn't think anything of it at first, but then I started not being able to eat very much and I was starting to look pregnant.  I finally broke down and made an appointment with my doctor.  She tried to tell me that I had a urinary tract infection, but that wasn't what I had gone to see her about.  I went ahead and took the antibiotics and got that problem taken care of, but I told her I wanted to get the problem about my waistline taken care of.  She told me if the problem didn't clear up in a week to come back.

When I went back a week later, she scheduled me for a CT scan.  This took several weeks to get scheduled and the whole time it was hard for me to get into my clothes.  I had to start wearing stretch pants even though they weren't part of the uniform for my job.  I got a call from my doctor's office a week after the scan and was asked to come in to discuss the results.  This did not sound good because she would not tell me over the phone what she found.  The first thing she told me was that the radiologist could not see my ovaries, but that could have been the result of only scanning the abdomen rather than also scanning the pelvic region.  They also recommended an MRI of the abdomen and pelvis.  This was scheduled within days (rather than weeks). 

Less than a week after the scan was completed, I received another urgent call from my doctor's office to come in to discuss the results.  It turns out that I had a 18cm x 16cm x 12cm mass in my abdomen.  No wonder I couldn't fit into my clothes any more!  I can't picture how big that is, but I am told it is the size of a small baby!  I was scheduled to see a gynecologist a week later.  I was in her office at 10 am on a Wednesday morning and she scheduled me to see her former teacher from Duke University that afternoon!  I was worked in at the end of his day in the clinic not too far from where I was working.  I was scheduled for surgery one week later.  That was September 13, 2003--the day I was diagnosed with stage 1C ovarian cancer.