Well, the day has come that I was hoping wouldn't... My cancer has decided to make another showing and I need to have another major surgery...

There is a spot that we have been watching on my scans for probably over a year now that has started to grow and has caused my CA-125 number to jump up again. And the worst part of it is that it is causing extreme back pain for me. I was somewhat secretly hoping that the back pain was the result of a pinched nerve caused by a bulging disc or something in my spine but it turns out that it is being caused by this tumor getting bigger and putting pressure on my ureter on the left side (the tube that connects the kidney to the bladder). The tumor is measuring about 3x4 cm in my latest CT scan.

I met with the surgeon at Huntsman on Wednesday and we talked about the procedure that he would like to do to remove the tumor. I will need to be opened all the way again so that they can get a good look at everything and remove anything else that they see that isn't appearing on the scan. In addition to that, they will most likely have to remove a section of my ureter (they are assuming that it has been compromised because of the tumor) and then reattach the remaining section of the ureter back into the bladder. Because of this they have had to coordinate the surgery with the urology oncologist so he can do that portion of the surgery. I will be in the hospital for 4-6 days and will come home with a catheter in that will stay in for 3 weeks (sounds like fun). The reason for the catheter is so that the bladder doesn't become overfull and compromise the surgery site.

And then after all of the surgery and a couple of weeks for recovery, I will get to do 6 rounds of chemotherapy again. This time around though they will use a different drug that doesn't cause hair loss and neuropathy - so that is a plus. The chemotherapy will be separated by 4 weeks instead of 3 like last time - so a little more time for recovery between the rounds. I'm also hopeful that they can do my chemo sessions at the South Jordan clinic which is about 5 minutes from my house, instead of the downtown clinic which is about 45 minutes away.

Overall I think I am okay with everything. More than anything I want to be free of this back pain that I have been suffering from. I have been trying everything I could think of to try and relieve the pain - exercising, stretching, heating pad, pain medications - and nothing has really helped. And it turns out that it is all being caused by my kidney! I can usually stand the pain during the day but it gets progressively worse as the day goes on and by the end of the day I am usually having a hard time managing the pain - and nights are the worst! I have not been sleeping well at all for the last couple of weeks - I just can't seem to get comfortable. My medical oncologist gave me a prescription for hydrocodone which I have been taking at night and it has helped a lot. I have finally been able to sleep some.

I just found out today that they were able to schedule my surgery for Tuesday, August 22nd. (They were shooting for the 22nd or 29th.) I am glad that they were able to schedule the earlier date except for the fact that it is the first day of school for my 11th and 7th graders. The other 3 kids start the next day so I will miss the first day of school for sure for them. I will not find out my surgery time until the day before the surgery.

I will fill in more details as I find them out.

Felt alright today. Mostly just tired and a headache. Since I noticed my hair falling out at the doctor's office yesterday, I made sure to wear a hat to bed last night. It's a good thing because this is what I found inside my hat this morning:
(This is just a simple knit hat that I made myself a couple of months ago to wear around the house and to bed when needed.)
I'm going to ask DH to shave my head in the next day or two so I don't have this hair dropping off everywhere and sticking to everything. When I get out of the shower it sticks to me and I end up finding little hairs everywhere. For those that are interested, here are a few pictures I took this morning of my hair and some of my scars. If you aren't interested in seeing them, you can skip this post! It's hard taking pictures of yourself, but I wanted to get some taken so I can document everything that has happened. I also wanted to document how much my hair came back in before it fell out again. I can say right now that I never thought that I would be dealing with the hair loss issue twice though!
Okay, these next couple of pictures are of my scars. I've edited them slightly, but you can get a pretty good idea of how extensive the incision was. Right now it's healing really nicely - just one small spot where I have a small scab still. Also if you look on the left side of the picture you can see a dark circle where my drain was for the liver part of my surgery.This next picture is of my port. You can see the nice incision with the bump above which is where the port is. If you look closely you can make out 3 small bumps that are in a circle. The needle is placed in the middle of those bumps. Above the port you can make out a line which is the catheter line that goes into my vein. Contrary to what we were led to believe, this port sticks out like a sore thumb! I can even make it out under some of my shirts... Also in the picture you can see up on my neck where they had a huge I.V. sticking out of me while I was in the hospital. That's the I.V. that was used for the blood transfusions I was given. I've also got several other little scars on my neck from who knows what that they did to me in the hospital!
So there's the show and tell for now. I just wanted to give those of you who are interested a chance to see some of what I have gone through.

Well, I made it through the surgery and both surgeons were very pleased with how things went. I had to arrive at the hospital at 5:30 a.m. to get registered and do some pre-op things. Then there was some confusion when they discovered that I had a port (even though I told them that when the hospital called with some pre-registration questions on Monday). So they had to wheel me all the way across the hospital complex a few buildings over to get my port accessed and then they had to wheel me all the way back. Apparently that made some people a little irritated because it put them behind schedule.

When I finally got to the operating room, I met the liver surgeon and then they took me in the room to get an epidural started to manage the pain. After that they laid me down on the bed and I don't remember anything after that until they were trying to wake me up and told me that the surgery was over.

They started with the liver part of the surgery and apparently there were two small spots there. It had looked like just one on the CT scans. The liver transplant surgeon was able to successfully remove both of those spots with a clear margin around both. They said that it looked like the tumors started on the surface of the liver so they most likely had migrated over from the original ovarian tumor instead of entering the liver through the bloodstream. That was some really good news because it means that the cancer might not be as widespread as originally thought. That part of the surgery took about 1 1/2 hours. The total surgery was about 5 hours. The main surgeon then took over and she said she was really pleased with how the surgery went and how well the chemotherapy had shrunk everything. They did a hysterectomy and removed my omentum as well as some small spots here and there that they found. They also took biopsies of most of my organs. They had to remove a portion of my diaphram, a tiny spot or two on the bladder and then a small, second appendix that I had for some reason.

When they brought me out of sedation I felt really nauseous and sick and I ended up throwing up a couple of times. They quickly gave me some anti-nausea medicine to counteract that. I was in the post-surgery recovery room for an hour or two until I was stable. They gave me two units of blood while I was there. I was really dry in the mouth and finally was able to get them to bring me some ice chips. I couldn't get enough of those. It also took me a while to finally get them to bring in a pillow to put under my knees. My back was killing me!

Then I was taken up to my room where DH was already waiting for me. Man did I feel out of it. I ended up just laying there trying to sleep. I heard DH call a few people on the phone. I had a really hard time finding a comfortable position for my back, neck and belly and it really hurt to try and change positions. I was pretty swollen after the surgery and had a hard time opening my eyes all the way. I have tubes and wires poking out everywhere. The worst one is an I.V. that sticks straight out from my neck. It is a large I.V. so they can give me things like blood through it. It looks pretty gruesome though.

DH ended up leaving around 8:00 to go home and take care of the kids for the night - my parents had been watching them all day.

Yesterday was an okay day. More than anything I was just tired - not many other side effects except the tingling in the hands and feet. We had an excellent meal brought to us by a family in the ward.

This morning I took the girls over to a neighbor's house while I ran to the store. Unfortunately I think MJ cried almost the whole time I was gone. She's been a little under the weather lately because she is cutting her first set of molars.

Well, today I got my first Christmas present - a surgery date scheduled for December 21st... My choices were December 21st or January 4th, and with insurance rolling over to a new year in January, it makes more sense for us financially to have the surgery before the new year. My only wish now is that I will be out of the hospital by Christmas. On the other side it does give me more time than I initially thought I would have to get things ready for Christmas. I was initially thinking that the surgery would be the first or second week of December.

Tonight was pack meeting and Luke got his Webelos award and also his Arrow of Light. I'm grateful for the excellent Webelos leaders in the ward that have helped him earn these!

Got up super early to make it to the hospital for our appointment time. This is really the first surgery I have ever had and I was more nervous then I thought I would be. It was another conscious sedation procedure, similar to the liver biopsy. A surgical resident came in to explain the whole procedure to us and then we met the surgeon. I think the resident did most of the work in the surgery room with the doctor looking on. The whole procedure was pretty quick and I only had to stay around for about an hour for observation. We were home in time for lunch. My hip was hurting again when it was about time to leave so the nurse gave me some painkiller for it. They made two incisions in my skin - one where the actual port was placed and then a second one up higher where they put the tubes for the catheter into the vein. It all looks pretty gross (what I can see so far). Most of it is covered up with gauze and surgical tape. I'm supposed to let the surgical tape just fall off on its own in the week or two. While the surgical spots are a little tender, I'm not really in a lot lf pain from the surgery.

The primary president brought us dinner that evening - very much appreciated! After we ate some of us headed over to the church for Luke's last Pinewood Derby. I don't think most people who were there are aware of my condition at this time. Probably a good thing because I wasn't really in the mood to talk about it much.

Sent DH to work again. He came home a little early to help finish up Luke's Pinewood Derby car. Why does it sometimes feel like everything hits at once? (I also got a summons for jury duty right when we started going through all of this diagnosis and testing. I had to ask the oncologist at Huntsman to write me a doctor's note excusing me from it...)

Got a call from Nereida at Huntsman letting me know that I was accepted into the clinical trial. We will go in for some lab work and to meet with Dr. Werner (my medical oncologist at Huntsman) on Wednesday and start my first cycle of chemotherapy on Thursday. I can't believe that this is really going to happen... She also informed me that I was randomized into group 1 which means that I will have the full treatment dose every three weeks, with just blood work on the in-between weeks.

Also got a call from University Hospital to answer a bunch of background questions before my port surgery on Tuesday. They also informed me that I needed to be at the hospital at 6 a.m. with the surgery scheduled for 7:30.

This was the last day that I nursed MJ. She has been so good about it, but it has been hard for me emotionally, especially when I know it is such a source of comfort for her. We quickly cut her down to twice a day and then once a day. She has woken up at night once or twice since that first night of no feedings and we havr just let her cry herself back to sleep. That's hard for me to do, but necessary at this point. Hopefully she will start wanting to just sit and cuddle with me without wanting to nurse. I miss that.

I sent DH to work today. He was reluctant to go, but I assured him that I would be alright and that if anything came up I would call him and he could come back home. Unfortunately he works about 45 minutes away (and in the opposite direction of the Huntsman Institute), but I was pretty sure that I wouldn't have to go in for anything that day. It was nice to not have any tests or appointments finally.

I got a call from Nereida informing me that everything looked good from the lab work and that she was hoping to hear from their parent company on Monday if I was accepted into the trial. She also asked if I wanted her to setup an appointment with a surgeon to have a port installed. We had pretty much decided that that would be a good thing for me to do so I told her to go ahead and set that up for us.

Later that afternoon I got a call from the surgeon's office letting me know that they had me on the schedule to do the port for me on Tuesday - and to be prepared for it to be early in the morning, like 6 a.m. The receptionist gave me a number for the University Hospital to call on Monday after 2 p.m. to find out my surgery time for Tuesday. She also gave me the instructions for the surgery: no eating or drinking after midnight, no ibuprofen or aspirin, no makeup, no lotion, no jewelry, wear comfortable clothes, leave valuables at home or in the car.

Updated the bishop and other ward members of the official diagnosis and that we are okay with people being told of my condition as needed.