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!