I had a little bit of an issue with my labs being drawn today. There is one study tube that is supposed to be drawn from my arm - not from my port - so that the heparin that they put into the port doesn't interfere with the results. The tube is to test for blood clotting and I guess the heparin can cause a problem sometimes. After my first round of tests were done that way, my study coordinator said that it would be fine to just draw that tube from my port as well - just have the nurses draw it last. So that is what I have been telling the nurses each time - and most of them did question me on it. Well, I guess my doctor has been telling the nurses to make sure that the labs that are supposed to be taken from the arm are taken from the arm and not from the port. So the nurse questioned me on it and I raised a bit of a stink about it and she finally decided - even after talking to the study coordinator and the nurse that works with my doctor - to just take the lab tube from my port after taking out some extra blood to help clear it. I talked with my doctor afterwards and said that this is how we have been doing it for over a year and a half now and if they are going to raise a stink about it and require it to be done out of my arm, what is the point in me keeping my port in? And why hasn't it caused problems with the results up to this point? Anyways, my doctor agreed to allow me to have it taken from my port so we will continue on as we have been doing for the last year and a half...

Other than that my appointment went fine.

I took MJ with me this morning to get my additional labs drawn.  I just had her sit on the floor next to me and let her play my ipad while they were drawing the blood.  They took it through my vein this time.

For the first round of the study drug, they draw labs at the 2 week mark just to make sure that everything still looks good after being on the drug for 2 weeks.  So I went in in the morning for the lab draw and it was pretty straight forward.

Went in for a Breast MRI this morning, followed up by a dr's appt with my oncologist at Huntsman and then an infusion.  I had to be at the clinic at 7:30 a.m. for lab work and then went over for my MRI appt at 8:15.  I was a little nervous about the MRI because the one I had a year ago wasn't very pleasant.  For the breast MRI you have to lay face down on the table and then you go inside the machine backwards.  This one was actually not too bad.  I definitely prefer the way they do the scan at Huntsman to the way it was done at St. Mark's last year.  At St. Mark's they told me that they would not be able to talk to me at all during the scan and I wasn't allowed to listen to any music - they just had head phones on my ears to dampen the sound of the scan.  At first it wasn't too bad but then you lose all sense of time and at one point I almost started to panic, wondering when it would be over.  At Huntsman the lady put me on the table and made sure that I was comfortable and then she said there would be a series of 4 scans - the first three were about 4-6 minutes each and then the last one would be the longest at 8-9 minutes.  She said that she would talk to me in-between each one and then she let me pick what kind of music I wanted to listen to.  It was definitely a much more pleasant experience!

Once my scan was done I had almost 2 hours before my dr's appt.  So I walked over to the waiting room for my clinic and then just sat there doing some work on my ipad and reading.  About 45 minutes before my appt I checked in just in case they were running ahead of schedule.  They called me right back, not realizing that I had already had my lab work done.  They weighed me and took my temperature and blood pressure and my heart rate and then sent me back out to the waiting room for a little while longer.  They when they called me back again I had to wait quite a while before anyone came in to see me.  I had the fellow doctor that I saw back in March again and he did the initial exam before the doctor came in.  Everyone was curious to take a look at my side where I had the sore.  At first my doctor was all concerned about it and telling me that next time I should make sure to call them first and go in to see one of their doctors at Huntsman.  Then when she finally realized that I had gone to a dermatologist at the Huntsman center's satellite office (which is much closer to me), she was much happier and pleased about it.  They were able to pull up the results from the lab work done on my side and print it out for me.  Apparently it was officially diagnosed as a type of cyst.  My oncologist said that if the dermatologist needed to do some minor surgery on the site, it shouldn't be a problem with the Avastin that I am on.

After my dr's appt, I had a little bit of time before my infusion so I went up to the eatery and got myself something to eat for lunch.  Then I went down and checked in for my infusion.  I didn't have too long to wait before they called me back.  I have now become one of those people in the infusion room that I used to envy - those that come in, get their treatment and then leave in less than an hour!  Today they got my Avastin really quickly, even the nurse was surprised.  I was finally in and out in less than an hour!  It was very nice!

CT scan this afternoon. I spent the morning working on some sewing and then my mom came over to watch the kids while I went in for my CT scan. Unfortunately my CT was scheduled for 5:30 p.m. I had to be at the clinic at 4:30 for my lab work and to have my port accessed for the scan. They were running a little late for the scan but luckily it is a quick procedure and I was done before 6:00 so I could go back to the clinic and have then flush my port and tape up my tubing. I decided to have them leave the needle/tubing in my port so that I will not have to be accessed again for my infusion tomorrow. I just have to be careful showering/bathing and make sure that I cover it so that it doesn't get wet.

I made a crockpot meal and left it cooking before I left so the family was able to get dinner on the table before I got back home a little after 6:30 (traffic was surprisingly light for that time of day). When I was a couple of miles from home my stomach started turning flip flops and not feeling too good. I was worried that I wasn't going to make it home in time. As soon as I pulled in the garage I rushed into the house and up to the bathroom. For some reason this time around the barium contrast that I had to drink for my CT scan gave me some severe muscles cramps and diarrhea. I was finally okay again by the time I went to bed, but those were a couple of not too pleasant hours. I almost felt like I had taken the Miralax again (which is what I had to take to clean out my bowels before my surgery).

My stomach muscles have been sore today from having to fight with MJ at the bookstore yesterday. She is definitely a handful and I had to carry her around quite a bit so she wouldn't run away.

Yesterday I wore my wig out in public for the first time. I've been wearing it around the house a little to get used to it and to try and style it more the way I want. Then yesterday I had to go to BestBuy to pick up something and then run a few other errands, so I decided to try out my wig. When I got to the store and got out of the car to go around and get the kids out, I saw someone from my neighborhood who had also just gotten out of their car and was walking towards the store. I saw her and looked straight at her to say "hi" to her, but she didn't even look at me or acknowledge me at all. I just started chuckling to myself because I think the wig is a very different look for me and this lady did not recognize me at all!

My CT scan was scheduled for later that afternoon so I found someone that could watch the two little ones for me for about 30 minutes until M&M got home from school. MJ was quite sad when I left her. Hopefully one of these days she won't cry when I have to leave her at someone's house... I had to get my blood drawn first for my lab work and then they left my port accessed as we went to another part of the building for my CT scan. I had to drink the Barium drink again and I had a hard time getting it down this time. Nasty flavor and aftertaste... I had the mixed berry flavor again, but it just tasted gross this time around. It was a pretty quick procedure - I think I was away from DH for less than 10 minutes. Afterwards we were supposed to go over to the U of U Hospital Imaging department to pick up a copy of the CT scan to take to my surgeon's office. First I had to go back downstairs to have my port de-accessed and then it took us several minutes to get over to the University Hospital and apparently the imaging office closes at 5:00 which is when we got there and there was no one around to help us. Luckily my surgeon was just able to have her office call over there to get a copy of the scan couriered to their office before my appointment the following Tuesday. We had dinner brought over to us that evening again which helped a lot since we didn't get home until around 6:00 again.

We met with Nereida who is in charge of the clinical trial at Huntsman. We agreed to participate in the trial and signed the necessary papers to get approval for that. I had to have an EKG done as well as some blood drawn to make sure that I qualify for the study. She also took me over to see the infusion room after we were through. I don't think I was emotionally prepared for that. All I saw in that room were people about twice my age who all looked sick. I did not feel like that was a place that I belonged. One of the nurses introduced herself to us and was answering a few questions about a port (I still hadn't made up my mind about getting one yet). The nurse then asked me when I would be starting my treatment and we said probably in the next week or two and then I lost it at that point. DH noticed me tearing up and grabbed my hand as we left the room. We then parted our ways with Nereida and she said she would be in contact with us as soon as everything was approved (or not) and hopefully have a starting treatment date of either the following Wednesday or at the latest, the Monday after that. She was hoping to hear by Monday if I would be accepted into the trial.

CT guided liver biopsy today at St. Mark's Hospital. It's sad when the receptionist at the outpatient desk recognizes you when you come in. This is my third day in the last week that I have been through here... There was a little bit of confusion at first on the test I was there to have done. Apparently the lab didn't inform someone that I was coming in so they weren't quite ready for me at first. Finally they took me back and hooked me up to all sorts of monitors to monitor my vital signs and had me sign all kinds of consent forms. With this method of biopsy they numbed me up some, gave me some type of drug some that I would be conscious, but not really feel much. They did a CT scan of my liver so they could mark the spot where the tumor is located so they can position the needle in the correct spot. Once they marked the spot, they did another quick CT scan to make sure the positioning was right and then inserted a long needle just under my right breast, into the liver to extract some of the tumor cells. After that I was taken back to the recovery room to be monitored for about the next 4 hours. They brought me a turkey sandwich and some soup for lunch since I had been able to eat yet at all since midnight. Unfortunately as it got close to my dismissal time, my left hip and leg started really hurting again. I tried changing my position a little, but could only move so much with everything I was hooked up to. The nurse noticed the pain I was in and had been left with instructions that she could give me some pain medication. So I agreed to take some and then I was free to go. We got home early afternoon.

With all of the drugs that were put into my system for the liver biopsy we decided that I needed to not breastfeed MJ at all that day and night until everything was out of my system. It was really hard because she loves the comfort that comes from her feedings. DH got her to bed that night and then got up with her when she woke up in the middle of the night. She was not at all happy to see him! He took her downstairs and forced some milk from a cup into her. Finally after struggling with her he managed to get her calmed down and then he put her back to bed. She immediately started screaming and cried probably for a good hour or so before she finally went back to sleep. Amazingly Kay and the other kids sleeping next door somehow slept through all of it.

Go to St. Mark's hospital for the chest CT scan and breast MRI. No eating or drinking after midnight for the CT scan, but luckily I don't have to drink the barium drink again. For the MRI I had to wear clothes with no metal on them anywhere - no zippers, snaps, buttons, jewelry, etc. The CT scan was pretty easy and straight forward and quick. They put in an IV and then left it in so they could use the same one for the MRI. The tech put some tape over it so it would't come out and later I had some nice cuts in my arm from the tape cutting into my skin... The breast MRI was quite the experience. I had to lay down on the table face down and I wasn't allowed to move for the duration of the scan - about 25 minutes. They put earplugs in my ears and then ear muffs over that to protect my ears from the noises during the MRI. It was still pretty loud even with all of that protection. They don't let you listen to music and they don't talk to you at all during the procedure because they have found that it causes people to move more or get anxious if the techs haven't talked to them in a while. My biggest fear during the scan was that my abdomen or leg would start hurting during it and that I wouldn't be able to stand the pain during the procedure. Luckily I did fine during it and only got a little panicky at one point when I kept thinking about all of the implications of what I was currently enduring. The frustrating part about the MRI is that there is no way to tell how much time has gone by. I was just laying there hoping that we were getting close to finishing, but no way to tell at all!

My parents have been great with being there to help out with the kids during all of this. M&M had the day off of school and when we got home from the hospital the kids and my mom had finished putting up the rest of the Halloween decorations.

Later that afternoon we got a call from my oncologist saying that she had the results for the scans that day as well as the lab work from Wednesday. Finally she had some good news for me! The chest CT scan and breat MRI both looked just fine and my kidney and liver function tests all came back normal except for one for the liver - which can be caused by other factors such as breastfeeding. She also had been in contact with some cancer treatment groups in the area and found that I may qualify for a clinical trial at Huntsman Cancer Institute and she strongly recommended that I talk with the doctor in charge of the study to see if we would be interested in it. She also wanted to schedule a liver biopsy for me ASAP so we can get a definitive diagnosis on my condition before we move forward on a course of treatment. The oncologist sounded much more optimistic with the good test results and it definitely helped to improve my spirits.

I got a call not too much later letting me know what time to show up for my liver biopsy on Monday. They also gave me instructions for the procedure - stop taking any kind of ibuprofen or aspirin (Tylenol is okay), no eating or drinking after midnight Sunday night. I needed to show up at the hospital at 9:45 in the morning and to plan on being there most of the day - I will have to stay for observations for about 4 hours after the procedure to make sure there is no internal bleeding.

I also got a call from the Huntsman Cancer Institute asking us to come in Tuesday morning to meet with the Cancer team in charge of the clinical trial. I asked if there was any way we could meet on Wednesday instead, but with their schedules that was the only time that week they could get me in. DH had a research conference for work scheduled for Tuesday and Wednesday of that week and he was doing a presentation during it. He was originally scheduled to present on Wednesday but when my surgery was scheduled for that day he contacted the organizer and asked if he could be moved to Tuesday instead... DH was out picking up the kids from their piano lessons so I called him as soon as I got off the phone with Huntsman. As soon as he got home, he checked the schedule for the conference and it looked like they still had him scheduled for Wednesday.

Sent DH to work because I was feeling fine and didn't have anything scheduled for the day. He had some people visiting the office from out of town and had missed them from the previous day because of my appointment. I got a call a little later that morning telling me that the oncologist wanted me to come in at noon that day. I asked what for and she said she didn't know. I called my mom to see if she could come and watch the kids for me and then called DH at work. He offered to come home to go with me to the oncologist, but I felt that I would be fine and could go on my own. I said a little prayer on the way over and felt a calm feeling that things would be okay.

When the oncologist called me back to meet with her, it was anything but good news. She told me that she had the results from the CT scan and the X-ray and she had been shocked by the findings. A large mass was found in my liver and the tumor on the ovaries is compressing one of my kidneys, limiting the outflow of it. I asked if the liver could be operated on and she said that the amount of liver affected is too large to remove without damaging the function of the liver. I asked if there was a chance that this was non-cancerous and she said there was a slight chance, but the results were consistent with Stage 4 Ovarian Cancer - meaning that it has spread beyond the abdominal cavity through the blood stream. She mentioned that she had consulted with the other doctor in her practice as well as some other colleagues in the area and they all agreed that we needed to cancel the surgery and go straight to chemotherapy in the hopes of shrinking everything enough that they could operate successfully and even hopefully remove the mass in the liver.

She also said that they could not make out any semblace of an ovary on either side - the tumor is basically taking over everything. The doctor was also slightly concerned with my chest X-ray and wanted to order a breast MRI and a chest CT scan since they can both be done when breastfeeding. They also sent me to get some blood drawn to run some tests to check my liver and kidney function.

I actually did fine emotionally until the end. I just sat there across from the doctor and said, "I am healthy and strong. I feel fine. I'm 35 years old with 6 young kids. I just had a baby a little over a year ago. I just don't understand how this could be happening to me...". I was still able to keep myself composed until I left the hospital and got into my car to drive home. Then I noticed a text from my husband wanting to be updated on what was going on. I sent him a text and then he called and said he would meet me at home.

Once I got home I told my mom the update (and once again was able to stay composed). I told her that DH was on his way home so she could leave. Once DH came home I was pretty much an emotional wreck the rest of the day... Luckily our Primary President wisely postponed our presidency meeting scheduled for that evening and even brought over a dinner for our family!

Appointment with the Gynecological Oncologist. She was a really nice lady who seemed very optimistic about my recovery and options. We discussed the implications if it is cancer or not and then she did some examinations on me. She could feel the tumor, and was pleased that it seemed about to move around so it did not appeared to be anchored to anything major. We scheduled an abdominal CT scan and chest X-ray for later that day and then scheduled a surgery to remove the tumor for Wednesday of the following week. At this point things seemed very optimistic and positive.

After drinking 2 full bottles of barium, I was ready for the CT scan. I was given a choice of the flavors I could drink: vanilla, banana and berry flavor. I chose berry flavor, but when the lady checked she only had one berry flavor that was chilled so she gave me that and then she had me pick another flavor so I chose the vanilla (she said that the drinks taste much better when they are chilled). We ran home to check up with the family for a few minutes and grab some lunch for DH (I had to fast until after the scan). I thought that the vanilla flavor started out tasting okay but by the end I was having a hard time getting it down. I thought that the berry tasted much better, but still had a gross aftertaste. We then left to go to the imaging center, I had the chest X-ray first and then I had the CT scan. Then we went back home.

Our ward had an Activity Days Achievement Night for the 8-11 year old girls and I tried attending it with DH and Blondie, but I started feeling really awful once we got there and the room was super hot - I was afraid I was going to pass out. I ended up leaving not too long into the meeting and the Primary President came up to DH afterwards and asked him if I was alright, so he filled her in on what was going on with my health as we knew it at the time. DH gave permission for the Primary President to inform the Bishop and Relief Society President, who both called DH later that evening.

At this point we didn't want to share the news with too many people until we had all the facts and questions answered as far as my diagnosis and the treatment I would need. We have told the kids that there is something growing inside of me that shouldn't be there (the tumor) so the doctors are going to perform surgery to remove it. Depending on how involved the surgery ends up being, I will be in the hospital overnight for at least one night and possibly up to three or four. Not looking forward to that at all...

Came home from driving someone somewhere and had a message on the answering machine from the OB/GYN. He wants me to come into the office to discuss the results of the ultrasound. At this point I still think it is just routine. I don't feel nervous about having to go back in - just a little annoyed that they won't just give me the results over the phone. I call the office back and make an appointment for the following day.

Ultrasound today. I seriouly felt like calling and canceling the appointment because I have felt fine since I met with the OB/GYN. They had me drink a ton of water before the appointment and I was just about ready to burst before hey finally called me back for the ultrasound. The tech started with the standard ultrasound on my abdomen, then she thankfully let me use the restroom, followed by an internal ultrasound - not comfortable at all. The tech gave me no results or hints about anything that she may or may not have found. She aked me at one point how long I had had the pain and I said off and on for about 1 1/2 months - around the beginning of August. When she was finished, I got dressed and went home.

I met with an OB/GYN today about a pain I have been feeling in my lower left abdomen - and sometimes in my lower back similar to my back labor pains. I think I started feeling it around the beginning of August. The pain has just felt like a cramp like I get when running or over-exerting myself and it comes and goes. My abdomen is also a litle tender if one of the kids steps on me. Nothing constant at all, but I will feel it periodically when I am just sitting not doing anything. I've looked up symptoms on the internet and am not concerned at all about it. Probably just an ovarian cyst which can go away on its own. I finally called to set up an appointment just to have it checked out.

We discussed my family history (which isn't good as far as cancer is concerned). I also know that I have a breast cancer mutation gene called BRCA-1 which puts me at higher risk for Breast Cancer and Ovarian Cancer. The doctor felt around some and could feel something there that he wanted me to have checked out with a pelvic untrasound. The doctor also had some blood drawn for a blood test. He also recommended a mammogram with the history of breast cancer in my family. I asked if that could be done while I am still breastfeeding and he seemed to think that I could (turns out that he was wrong and I was right). Since my husband was leaving town the next day for a business trip to China I decide to wait until he gets back from that to have the ultrasound done.