I woke up this morning barely being able to talk.  My throat has been sore the last couple of days and today it still hurts and now I can't talk very well.  Unfortunately because of my tooth that was pulled, I need to not suck on any hard candy yet which means no throat lozenges for me...  Then this afternoon I had to start fasting for my CT scan.

Originally I was scheduled for the scan in the morning down here at the clinic near my house but I got a call last week from the study coordinator who said that if I was going to enroll in the new study then I needed to sign the consent forms before my lab work and CT scan were done.  So we rescheduled the scan for the downtown location on that same day but the only time they could fit me in was 6:15 p.m. (and pick up my contrast at about 4:45).

Then around 2:45 today I got a call from the study coordinator again asking if I could get there any sooner because they needed to try and get the lab work off to the drug company that day and the last FedEx pickup is at 5:00.  I said that the earliest I could leave home was 3:15 when my son gets home from school and can babysit the little ones for me.  That should still get me to the clinic around 4:00.

So I left as soon as my son got home and got there right around 4:00.  I went to the radiology clinic to checkin and get my contrast drink first and they said that the tech wouldn't bring it down to me until 5:15.  I was a bit confused by that because they have always had me start drinking the contrast 1 1/2 hours before my scan.  I asked the receptionist about that and she said that different radiology technicians do things differently and this one likes to have you start it only an hour early.

So then I quickly went back downstairs to check in at the clinic where my labs will be drawn and where I will talk with the study coordinator.  I told the receptionist that I was there for labs and needed to meet with the study coordinator.  Apparently she chose to just process the first part of my information and only told the nurses that I needed labs drawn.  So after sitting around for almost 10 minutes they finally called me back to the room where they access my port and I said that I needed to meet with the study coordinator before I did any labs.  So after asking several different nurses I finally saw one of the nurses that works with my doctor and she went to let the study coordinator know that I was there.

She came out a few minutes later and we discussed the study and the drug and what it does and I asked her a bunch of questions about it.  Basically this part of the study is specifically for BRCA-1 patients and the drug is supposed to help prevent the formation of new cancer cells and hopefully even kill off cancer cells that have already formed.  It would require me to take 2 pills a day and get labs drawn every 4 weeks with a CT scan every 8 weeks (not too crazy about that requirement).  Unfortunately the most common side effect is nausea which can hopefully be controlled with other medications - not too crazy about that either.  The good news is that I can pull out at any time and for any reason.  So I decided to sign up for the study and then went to have my labs drawn.  The person from the lab that needed to process the blood work was standing right there almost pacing, ready to grab the blood as soon as it was ready.  I still think they managed to not get it ready in time because I heard the study coordinator talking on the phone to someone about it.  Not really my concern though at this point.

So after that I went back to finally pick up my contrast drink and the study coordinator came with me because she still needed to get an EKG test done on me before I left.  She asked the receptionist at the radiology clinic if there was a room they could use there for it but she said we would have to ask one of the radiologists.  So after they finally brought me the contrast drink we went back down to our clinic and she took me into a room and called someone down to run the EKG test.  They had me lay down and put about 12 different little tapes on me on different areas of the body and then hooked them up to the machine and it took about 2 minutes - pretty painless.

Then I was finally ready to go back to the radiology waiting area and had not quite an hour to wait for my scan.  Once they called me back for that it was pretty quick.  I have learned to wear clothes that have no zippers or metal anything and then I don't have to change at all and they just have me lay on the table, hook up my port to the dye contrast and then start the scan.  Afterwards I had to go to the after hours clinic to be de-accessed.  Talk about running around today!!

I just read the other day that Pierce Brosnan's step-daughter Charlotte just passed away from a 3-year battle with ovarian cancer - I'm not sure if she was 41 or 42 - it depends what source you read.  Apparently her mother and grandmother also died of ovarian at young ages - her mother was 43 and married to Pierce Brosnan at the time.  The family has the BRCA-1 mutation that I also have.  I wish that I could find out more about her battle with the cancer, but so far I haven't been able to find anything other than statements to the fact that she has fought it for 3 years.  That's one reason why I am keeping this blog in the hopes that it might help someone else down the road that is going through a similar battle with ovarian cancer.  It is sad to hear news like this though and I hope that their family is able to find peace.  She leaves behind a husband and two young children.

I had dinner at my parents' house this evening and my younger sister and her family were there as well.  My younger sister is also positive for the BRCA-1 mutation gene and has some difficult choices ahead of her.  She said that her OB/GYN wants her to decide now how many kids she wants so that as soon as she is done they can remove her ovaries (they recommend it be done at age 35).  She just had her second child in November and will be 34 in August.  I told her that looking back I don't know that there is anything that I would have done differently or could have done differently.  I was 35 when I was diagnosed with my cancer!  I also felt very strongly before we had MJ that there was another spirit that needed to come into our family so I know that I was supposed to have her.  I also know several people with the BRCA-1 mutation who had their ovaries removed when they were much older than me and never developed ovarian cancer.  Unfortunately I don't have any good advice for my sister or anyone else in a similar position except to pray about it and do what feels right for you and your situation.  The unfortunate part about ovarian cancer, and the reason that it usually isn't detected until stage 3 or 4, is that there is no definitive test to diagnose it and there are no symptoms that are conclusive to it either.  We have no idea how long I had my tumors before we found them - sometimes the cancer is very fast growing.  My sister also knows a fellow nurse where she works that was diagnosed with ovarian cancer in her 20s but didn't want her ovaries removed because she still wanted to have kids.  I can't remember the details of what kind of treatment she received at the time but I know that they treated her and she kept at least one of her ovaries and went on to have a couple of kids.  She then had the cancer come back and I think at that time she had the ovaries removed and went through more chemo.

I had the hardest time falling asleep again last night. Once I was finally asleep though I seemed to sleep alright. I did wake up with a headache though which isn't a good thing. Things were super busy at the Huntsman clinic today. We got there on time but ended up seeing the doctor an hour and a half after our scheduled time! We discussed the treatment that will follow my next chemo treatment. I will be coming back every three weeks for the Avastin infusion (an experimental drug offered through the study I am on). With the Avastin (aka Bevucizamab), I will not need to have the weekly blood tests and blood pressure checks which will be nice and I will only have to meet with my doctor every other visit. I will have a CT scan after my 6th chemo treatment and a mammogram or breast MRI every 6 months to screen for breast cancer since I am at higher risk for that as well with my positive BRCA-1 mutation. My blood counts were reasonably good today and I didn't have any problems with the infusion - other than the ones I typically have - blurry vision & foggy brain, sleepy feeling with the Benadryl.

We were in the infusion room for way too long today! With us starting so late they didn't get my chemo drugs started until 1:30 and we weren't finished with the infusion until just after 7:30! A big thanks to my parents who watched the kids for us! My mom came over just before 9 a.m. and then my dad joined her a little later (he wasn't feeling great yesterday so he wasn't sure if he would be able to make it to help out). My parents also gave M&M a ride to the local high school for a bad concert tonight (which we ended up missing because my infusion went so late). M&M called us on our way home to tell us that she was ready to be picked up. Luckily we weren't too far and were able to pick her up on our way home. We finally made it home around 8:40 and were able to eat some dinner and then get the kids to bed. MJ amazingly seemed to be in a happy, good mood when we got home so hopefully she is getting over the whiny attitude. After eating dinner my stomach started hurting a little and I started feeling really hot. I think it may be because I ate too much a little too fast! Hopefully I will be able to get a good sleep tonight and will feel better in the morning.

And on a side note I noticed at the doctor's office this morning that my hair is starting to fall out. I will probably have my husband shave my head in the next day or two so we don't end up with tiny hairs all over the house and my clothes and hats...

I attended the Worldwide Leadership Training Broadcast this morning broadcast by the church. DH was supposed to come to but he wasn't feeling well again when it was time to leave so he stayed home and ended up taking a nap while I was gone. A little later in the day I ran a few errands to get some Valentine stuff for the kids to make Valentines for their classes. After that I helped the kids make their Valentines and then gave DH a quick haircut.

My mom came over in the evening to watch the kids while M&M was at the school play and DH and I were out. My neighbor who went through breast care treatment a few years ago invited me and DH to attend a cancer support group dinner with her and her husband. It is a support group for women diagnosed with cancer in their 40s and younger, called the Young Survivor Sisters. Right now the group consists solely of women with breast cancer so I felt a little weird there. While I have gone through some similar experiences as these women, a lot of it is also very different. There are also several of these women that have the BRCA-1 gene, so that is one thing that some of us share in common. I saw two women there that I actually know personally. One of them (one of the founders of the group) lives in my stake and was diagnosed with breast cancer at age 26. The other women is M&M's Language Arts teacher this year at school. We talked for a little bit after the dinner and she expressed her concern for M&M and wanted to know if there was anything she could do for her. I got a little choked up talking to her. I think whenever my kids are mentioned I have a hard time keeping it together. That and the fact that I kept thinking about how my experience that I am going through is so different than so many of these other women. The keynote speaker/performer for the evening was Hilary Weeks - an LDS singer/songwriter. She was hilarious to listen to and had some very inspirational songs as well. It's nice to hear how similar kids and parents are, no matter who you are. It was a very nice evening and dinner and it was nice to be invited by my neighbor. Right now I am trying to decide where my place fits with this group. On one hand I think it might be nice to join and use this experience to educate these women about ovarian cancer, and on another hand maybe I need to look into starting up my own group that focuses on ovarian cancer or BRCA-1 positive women. A few of the women in the group had made some necklaces for everyone in the group that had the pink ribbon on it and the letters YSS (Young Survivor Sisters) underneath the ribbon. I was reluctant to take one, but finally did after the urging of several people there. I honestly can't see myself ever wearing it because the pink ribbon is specific to breast cancer and I am not a breast cancer survivor. Each type of cancer has its own color and the color for ovarian cancer is teal. I've been looking online for something specific to my type of cancer that I can buy and wear. So far I've found a necklace, bracelet and hat that I like but haven't ordered anything yet.

DH stayed home to work on his presentation that was to take place in the early afternoon. I don't carry my cell phone with me when I am at home and at one point I picked it up and looked at it and noticed that I had missed a call from Dr. Rhode. I'm not sure why she called my cell phone because on Friday she had contacted me on my home phone several times. She left a message on my cell phone informing me that the results from the liver biopsy were consistent with a metastatic tumor caused by ovarian cancer. I now have the official diagnosis of Stage 4 Ovarian Cancer.

When I first heard that this is what I might have I did a little bit of looking on the internet and then decided that that wasn't a good thing to do. Stage 4 Ovarian Cancer is not curable. Once it has left the abdominal cavity through the blood stream, it can be anywhere in my body and impossible to totally cure. The doctors are very optimistic about my recovery because I am young and healthy, but it is something that will have to be constantly monitored for the rest of my life. The doctors at Huntsman said that people with the BRCA-1 mutation gene typically respond better to chemotherapy than those without the mutation so that works in my favor, but it is also most likely the reason that I have this disease at such a young age. They are confident that the chemotherapy will quickly shrink the tumors that I have and that there is a very good chance of a successful surgery to remove the tumors once I am finished with my third cycle of chemo treatment. We are looking at around the first two weeks of December for my surgery, provided everything goes well up to that point. After my third chemo cycle I will have a CT scan of my abdomen to make sure that things look good for surgery and then we will proceed from there.

This has all been hard to come to grips with. Aside from the occasional pain I get on my left side, I feel completely healthy! I've tried my whole life to refrain from things that I don't think are good for my body. All of my kids were born with natural, drug-free births and the last 5 were born at home! I rarely take medicine for anything. It seems so wrong that I have these tumors growing inside of me and if I don't do anything about them they will kill me! I have so much to live for and such young kids! I keep thinking that this is all some bad dream that I need to wake up from. It's shocking how much the course of my life has changed in just a month!

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.