I felt decent overall on Wednesday but then on Wednesday night, I had a lot of stomach cramps all night long and a lot of heartburn and only got bursts of sleep of about an hour at a time. At one point I finally threw up a few times in a row and it was a nice bright green color - pure stomach acid. My abdomen is still draining a lot and that is a annoying to have to deal with all the time. Thursday morning I pointed out once again to the doctors that my left foot/leg was really swollen so they ordered an ultrasound of my leg to check for any blood clots. I also had an x-ray done of my abdomen to check my bowels and make sure that there was nothing that looked amiss since I still haven't had a bowel movement yet.

A vascular surgeon did the ultrasound of my leg and didn't see any clots, but then he went on to tell me why I have all of the swelling. He says that the beds in the hospital are horrible because they encourage people to sleep with their head and knees up. He says that especially when you are not able to be up and walking around a lot that the fluid in your legs doesn't get pushed back up to your core. When you are sleeping you should sleep completely flat with a pillow under your feet. That will allow gravity to help work that fluid out of the legs. A lot of the fluid too is from the fluid retention that I have because of all the fluids that I am being given plus the fluid build-up from the surgery - I look pregnant right now because there is so much fluid built up in my abdomen.

I try to FaceTime my kids most days and it is sad because they just want me to come home and I just want to be home too - the younger ones are having a hard time understanding why I'm still not home.

Overall I had a pretty good day on Thursday. I am still being pumped with a bunch of stuff through my i.v. - mostly antibiotics and electrolytes because my levels got really low. When my husband and daughter were visiting during the day he had me get up every hour to walk around. I ended the day with making 15 laps around the floor. I still haven't had a huge appetite for anything but I did order a few things off the liquid menu to try and was able to drink more of it than I have been up to this point.

The last couple of times I checked on my fluid drainage, it had almost stopped which I am hoping is a permanent thing! I have only been taking Tylenol today for pain.

So then last night I was feeling pretty good and when I was ready for sleep I got my bed into the totally flat position and laid down on my side and was actually able to sleep pretty good! I think I got about 3 1/2 hours until I had to be woken up for some medication and a Lovonox shot (to prevent blood clots) then (after getting up to use the bathroom and no drainage) I was able to sleep for another 1 1/2 hours when I had to be woken up again to be hooked up to antibiotics and labs. I then tried to go back to sleep but felt that my insides were a little unsettled so I got up to use the bathroom again. And this time I actually had a bowel movement (a lot of diahrrea). And there was very little drainage all night. I was going to go back to sleep again but my insides are feeling quite unsettled so I am sitting up waiting for things to work through my system.

So, definitely some steps in the right direction! I actually have a bit of an appetite right now too so maybe I can talk the doctor into allowing me to try food today.

As far as I know the things that are keeping me here in the hospital are bowel movement (which can be checked off now), I need to be able to tolerate solid foods and then the bacteria in my blood - they need to know that that is under control with the i.v. antibiotics until they can switch me to oral antibiotics and allow me to go home.

Time for another update. (Probably overtime for all of you that have been wondering.)

Well, I am still here at the hospital. :( I ended up having a weird experience Sunday afternoon. Some of the details are kind of gross so if you don't want to read on, feel free to stop reading. (I have put stars farther down the post if you want to pick-up the reading after the gross part.)

I got up to use the restroom around 3:00 in the afternoon and nothing out of the ordinary happened. After I use the bathroom I like to take a walk since I am up already at that point (which is kind of a chore in itself). So I started walking down the hallway and I started feeling something wet between my thighs and then I started feeling some liquid dripping down my legs. My first thought was that maybe I hadn't quite wiped myself good enough after using the bathroom. I quickly turned around to walk quickly back to my room and glanced down at my legs and noticed that the liquid was red. (And I am pushing an I.V. pole at the time.) As I made it to the room I saw an aide in the hallway and asked him to get my nurse because I was bleeding somewhere. I went into the room and stood there by the bed as blood is just streaming down my legs and all over my socks and leg compressors. My nurse took a minute to get there so I went into the bathroom and stood there dripping until she came. She then had me pull down the disposable underwear I have been wearing here and sat on the toilet and blood just shoots out straight from my abdomen - about midway down my incision. It was pretty disgusting looking - like something out of a horror movie! She quickly grabbed a towel and had me hold it on my abdomen with some pressure and she and the aide cleaned up the blood off of the floor. Then they had me go and lay down on the bed - which I was hesitant to do because I didn't want to get all the blood on me onto the bed. They didn't feel comfortable having me stay on the toilet though in case I passed out.

My doctor's group was paged and one of them came and took a look at it. She seems to think that it is just a normal fluid pocket in the body that has mixed with some blood and found an opening to come out of. They decided to just bandage it all up with some gauze and tape and see what happened after that. They nurse and aide then cleaned me up and put new everything onto the bed so I could lay back down on it. It didn't take long to soak through though bandages though and I think we had to change the sheets at least once more that day.

** I am finished with the gross details!

They did finally switch me to a clear liquids diet on Monday which is a good step forward. Unfortunately I have been having a lot of heartburn and everything on the menu is acidic. I ordered a few things from the menu but couldn't drink more than a few sips of them.

Yesterday as they were taking the tape off of the dressing covering my incision, I looked down and noticed some pink looking skin. I reached down and touched it and almost cried because of the pain. I have very sensitive skin and so having to put this tape on and remove it multiple times a day has given me a couple of sore spots that hurt really bad. So we covered it up again and this time only used tape in the non-sore area but even after that and talking to one of the doctors, we decided to try just laying the bandages onto the wound and me just holding it in place with a towel and pillow. It worked most of the time - I think I did leak out onto the bed again but they had covered it in waterproof pads so it was as bad to clean as the last time.

Last night another nurse suggested a different way of holding it place - using the disposable underwear and that is working wonderfully and allowing me to get up and walk around again.

Today I was upgraded to an all liquids diet - which is a little better. I have not had a bowel movement yet which has the doctors concerned and I am still on I.V antibiotics for the bacteria that was found in my blood culture.

Today my abdomen is really swollen from all of the liquids that they are having pumped into me and I am still draining from that one spot on my incision line. It is still draining pretty good which is quite annoying but we are constantly finding better ways to cover it to contain the fluid. They let me take a shower today which felt good - my last one was on Saturday. DH happened to show up while I was in the shower so he was kind enough to help me get the new dressing mess on and situated.

Sorry I haven't been in much of a mood to update lately (and now I have the oxygen sensor on my left index finger). Quite frankly I was hoping to be home by now but I am not. I did really good the first couple of days after surgery and felt really good and things were looking like I might be released as early as Friday.

Then Thursday night into Friday I started taking a turn for the worse and felt really nauseous, heartburn and even threw up several times and didn't feel like eating much at all. They decided there must be something going on with my bowels so they put me on an NPO diet (which basically means I can't eat or drink anything) and they are just giving me I.V. fluids to try and give my bowels and stomach a break. I have had several x-rays of my abdomen area and a lot of lab work done to try and see if there is actually a problem or if my bowels just need a little more recovery time. So far results have been normal except they had one lab come back with a positive for bacteria in my blood which may mean they will need to do a ct scan to figure out if there is a problem.

They tried one afternoon to put a GI tract up my nose and down to my stomach to try and clear out some of the gas there but it hurt so bad just getting it up my nose that I made them take it out. It felt like they were breaking things in my nose to get it up there. They were going to try it again later but I was able to talk the doctors out of it and they said as long as my nausea and vomiting could be kept under control then I could get away with not doing it. And thankfully I haven't thrown up since then.

DH brought the kids except M& to visit me last night. They have been missing me. :( It is sad because I had to miss Kay and MJ's first soccer games. Kay kept trying to hug me but we had to call her off because of my incision right down my middle - she was only allowed to do side hugs. They just stayed for a little bit because quite frankly there is not much to do to entertain them here and I am pretty tired most of the time so I am not much company either. All I want is a nice big cup of ice water! And they won't even allow me to have that! The only thing I can do is swab my lips with water and drink a time sip with some of my medication.

Well, things didn't go as we were hoping yesterday during the surgery... Apparently the tumor is a couple of smaller tumors that are somewhat imbedded into my abdomen and close to a main artery so the surgeon didn't feel comfortable removing any of it. He took a couple of pieces to biopsy and then closed me up. He was going to talk with my medical oncologist about treatment but he is thinking we need to do some chemotherapy and possibly radiation therapy first to try and shrink things and then go back in and remove what is left. Needless to say I am not too happy with that bit of news.

The surgeon is supposed to come in shortly here and talk to me this morning about our next course of action.

I was in quite a bit of pain after they brought me out of the anesthesia and I remember laying there on the table just moaning because of the pain. After a little bit they were able to get the pain under control and took me to my recovery room where DH was waiting for me. He is the one that broke the news to me and I was quite upset to find out what had happened. The only good news is that I don't have to go home with a catheter in...

Okay, the surgeon just came in as I was sitting here typing. He says the best news is that everything is confined to that one specific area and he is hopeful that because of that, we can successfully attack it and have a positive outcome. He said that the tumors were too close to the main artery in the leg and he and the urology surgeon were not optimistic that they could remove it without causing damage to the artery or nerves of the leg.

Anyway, taking things out of order, I had a rough day yesterday and was quite out of it and wasn't much company for DH and then my parents who came by later. I was able to FaceTime with the kids twice yesterday which I think was good for them. Kitty and Luke had their first day of school. Luke said he was already given a lot of homework on his first day! One of our neighbors took MJ and Kay to the open house for their new elementary school where they were able to meet their teachers and find out a few of the kids in their classes. MJ also had her first soccer practice and luckily her friend across the street from us is on the same team so they were able to give her a ride to the practice. She was pretty excited to talk to me about the practice,

I tried eating some salad last night for dinner but ended up mostly just picking at it and didn't feel like eating much of it. I was super tired and kept zoning out in the afternoon & evening yesterday. And then when the family FaceTimed me, I kept zoning out as well... I slept so so last night. I am in control of the pain medication and have to keep pressing the button to get it administered through my I.V. There are so many lights and noises and interruptions during the night that it is hard to get much sleep. They also have devises on my legs that keep inflating and deflating to help prevent blood clots - also, the bed inflates and deflates in places periodically for the same reason (I believe). Sometimes that is pretty noisy and distracting as well.

This morning they took out my catheter just before 6 a.m. I tried going to the bathroom a little bit after that and was able to get a little bit out. That was my first attempt at walking and I felt okay doing it. After that I asked if I could walk out into the hall for a few minutes so I have my first "walk" out of the way.

Alright, I guess I will sign out for right now. I will try updating again later today - and let me point out that it is hard to type with this oxygen sensor on my right index finger!

Surgery day tomorrow. My check-in time for the hospital is 7 a.m. Hopefully once they get started with the surgery, it will only last the 2 hours that they are planning, instead of the 5 hours that the last one took! Nothing to eat or drink after midnight - except I can take my pain medication with a small sip of water if needed.

Earlier today my parents came over to watch the partial solar eclipse with me and the younger 5 kids. It was neat, but not earth shattering! I'm glad I was able to purchase some solar glasses for each of us last week.

Tonight my parents came over again and DH and my dad gave me a priesthood blessing. I am holding together pretty well at the moment but am sad that I won't be here for the kids for their first days of school this week. Hopefully things will go well and smoothly for them and hopefully I will be able to come home Saturday! That is my goal. Well, wish me luck! I'll post an update as soon after my surgery as I am able.

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.

Another appointment today. I asked about what our next step would be if my numbers continue to go up and the spot on the scans continues to get bigger. Dr Werner said that if that happens, they will look into doing a biopsy of the spot to see if it is cancerous or not. Also, my scan next month will be done without the IV contrast. That will make it a little more difficult to see things on the scans but since they have a spot that they are keeping an eye on, they should still be able to see it in the scans. They also said that they have the new protocol for the study drug written up and sent to the NIH (or the FDA - I can't remember which now) for approval. That will allow us to do the scans less frequently as well as doctor visits if we want to.

Well, my CA-125 number has jumped above normal... It went up to 36 this time around.

I met with my oncologist first and we discussed the results of the scan and the CA-125 number. The spot on the scan is maybe slightly bigger than the previous scan - but really not much. The CA-125 number consistently going up is also concerning. At this point though there isn't much they can do about any of it.

Afterwards I had an appointment with my newest new surgeon... This is the first male doctor that I have gone to and I wasn't terribly impressed... He is an older man and while he was friendly enough, he didn't seem at all concerned about my scans or my CA-125 number. He checked me out internally and things appear to be fine to him. He wants me to come back in about 3 months to see him.

So my husband was supposed to drive me to my CT scan today since my daughter is away at college now, but he had a conflict with a conference he was supposed to be attending - actually not too far from Huntsman. So I ended up taking Trax to my appointment and then my husband met me there and he drove us home afterwards. I took the same premeds again today along with the Zantac. (Looking back though I think I only took half of the dose that I was supposed to take of the Benadryl.) They administered the IV iodine contrast a little slower which I think helps with the nausea that I have felt in previous scans. Afterwards I had a little bit of a tickling feeling in my throat along with the other symptoms that I have been having up to this point. Afterwards the radiologist came and talked to me and is going to recommend that I not do the IV contrast anymore. I guess the concern is that the reaction may get worse and that is something that they don't want to play around with.

My CA-125 number jumped back up this time around. This time it was a bit of a bigger jump and it is at 30... Slowly getting closer to the normal upper range of 35...

Another routine appointment today. I will find out my CA-125 results tomorrow. When I was done having my port accessed though, I went into the restroom for the urine sample and when I was washing my hands I looked in the mirror above the sink and my shirt had blood all over it! Apparently my port had bled afterwards and it was completely noticeable!! I was wearing a bright green shirt and it was very obvious! I went back to the nurses station and showed it to the nurse and she cleaned me up and used some hydrogen peroxide to get most of the blood out of my shirt. (And after I got home and washed it, all of the blood did come out.)

Well, my CA-125 number went down slightly to 23. My appointment went fine again. We talked a bit about my allergic reaction but other than that, not much to report. They are still seeing the same spot on my scans but it appears to be about the same size.

At my last appointment they gave me another premedication regimen for my next ct - scan which adds me taking a Zantac pill an hour before the scan with the Benadryl and Prednisone. I had M&M drive me again. Unfortunately they were running behind and I ended up having to wait an extra 45 minutes or so before they finally took me back. When I was waiting for my oral contrast I had M&M run down to the pharmacy to pick up some Benadryl for me - which I am supposed to take an hour before the scan.

My reaction was pretty similar once again, although I didn't throw up this time which was good. I got super flushed again and one hive appear on one leg. They allowed me to just wait out in the waiting room for about a 1/2 hour to make sure I didn't have any more reactions. The bottoms of my feet felt really itchy but that didn't last too long.

My CA-125 number went up to 25 this time around.

Things were pretty routine at my appointment today. Nothing really to report.

Well, unfortunately today I did not get the best of news at my appointment... My CA-125 number jumped up to 24 and that one spot that they identified in my last scan appears to be slightly larger this time around... My doctor said that she isn't too happy with either of those developments. So at this point they will continue to monitor both the CA-125 number and that one spot. If it is larger next time around, we may start discussing surgery with a surgeon at Huntsman...

So today I had M&M come with me to my CT scan because I had to have a driver with me because of the premedications that I had to take. I also had to go to the Huntsman hospital instead of the satellite office which is closer to my home. So we got there and I picked up the contrast drink and then had my port accessed for the scan. I was a little nervous for the scan but made sure to warn the techs that I had an allergic reaction last time and that I had taken the premeds that they prescribed me. Well I ended up having the same reaction this time... I felt super warm and flushed and my skin turned bright red and I also threw up and had one hive appear on my leg... They had a physician come and monitor me and then they took me to a small room to wait and make sure that nothing else happened. They had M&M come and wait with me in the room. After about a half hour they let me leave and after having my port deaccessed, M&M drove me home.

My CA-125 number went down to 18.

Dr's appointment went fine today. Nothing really to report. I picked up some Prednisone that I will have to take before my next scan. I have to take the Prednisone as well as Benadryl.

Right before my appointment they released the results of my CT scan. The radiologist wrote in the results that there is a spot in the scans that is slightly bigger that they have been following for the last several scans... What?!? There has been no mention of this before in my previous scans.

When my doctor came in she asked if I had read the results of the scan and she said that this radiologist is a little too thorough sometimes and he flat out made that part up about there being a spot that they have been following... So, apparently there is nothing that I should be worried about at this point in my scans. There is a very small spot but it is hard to tell if it is really something to be concerned about or if it is just a blood vessel. So they will keep an eye on that area for future scans.

We also discussed my allergic reaction to the scan today at my appointment. Unfortunately at this point the study will be ending but not for a few months until they can rewrite the criteria for the study drug. So next time I have a scan I will need to take two drugs prior to the scan to hopefully counteract any reactions.

I also got my CA-125 number today and it went up again to 19...