Happy Halloween! Well, I had a hard time falling asleep last night AGAIN!! This time I stayed up updating my blog until about 1:00 in the morning. I think I fell asleep around 1:30.

Well, it's started. I showered this morning and then started brushing my hair and it was coming out in much larger amounts than it ever has before. I'm nervous to lose my hair. It has gotten really long lately and I was planning on cutting it until I was diagnosed with cancer and found out that my hair would be falling out. Then my thought was, "I'm not going to pay to have my hair cut just to have it fall out a couple of weeks later."

My dad came over this afternoon to watch MJ so that Kay and I (and my mom) could go to the school parade. I think Kay enjoyed the one on one attention. After that I put MJ down for a nap and then read for a little bit. I am going to try and not nap at all today in hopes that I will be really tired at bedtime and actually fall asleep at a decent hour. I'm not sure why I'm not just dropping off from sheer exhaustion with the lack of sleep I have had the last few nights!

When Blondie came in the door from school she immediately asked me if Kitty was here. I told her no and asked if she was on the bus. Apparently she wasn't and Blondie and Luke just assumed that I had taken her home after the school parade. I quickly run out to the car and take off for the school. I tell the kids that if Kitty or someone from the school calls, to tell them that I am on my way to school and then to call my cell phone so I know she called. All kinds of thoughts run through my head about what may have happened to her. As I pull up to the school I see Kitty running at full speed towards the school. I turn into the drive-through lane and honk my horn, hoping she will stop, but she keeps going and runs in the school as I pull up to the door. I roll down my window and yell her name and luckily she hears me and runs back out. She is somewhat hysterical and it takes her a few minutes to calm down before I can figure out what happened. Apparently she got out of class after the bus had already left so she went over to to car pickup lane and waited for me there, assuming that I would come pick her up. Kids just kept leaving and leaving until there was only one kid and her out there. I think the parent of the other kid told her to go to the office and call home and that's when I pulled up and saw her running to the front door of the school. What I can't figure out is why the administrators would leave a 1st grader out there in front of the school by herself. I think I will have to look into that. And, we went over what she should do next time if she ever misses the bus next time. (Thankfully this happened at a time where I was well enough to immediately leave the house and go pick her up.)

The weather was perfect for Trick-or-Treating! The kids had a good time and I stayed home with MJ and M&M handing out candy. After we got the kids to bed I asked DH to cut my hair. After thinking about it a little I decided that my hair will probably fall out more slowly if it is shorter - less tangles to have to brush out. Plus I'm not keen on the idea of having long hair all over the house as it falls out... So I put my hair in a ponytail and had DH cut off the ponytail just about the ponytail holder. The I just trimmed a few hairs here and there and we all think it looks pretty good. I put the ponytail in a ziploc bag and I am going to save it. After that I went online and ordered a couple of hats and a wig. Wow that sounds weird! Hopefully I will get it shortly and that I will like the wig. DH and M&M and I spent quite a while trying to decide on the style and the color to order. We all just want it to look natural and not look like I have a cheap wig on my head. Here's to hoping!!

I couldn't fall asleep again last night! I'm not sure what is going on with me. I got up and read again and this time I think I fell asleep around 3:00, so a little bit better than the night before. The weird thing was that when I got up at 7:30 to get ready for church, I didn't feel super tired. Unfortunately, I didn't give myself time to get everyone and myself ready so I ended up sending everyone to church and then MJ and I followed about 20 minutes later. Church was fine. People are still finding out the news about me and I think many people are surprised when they see me there. I had a meeting after church and then came home and laid down for a little bit. We had a TON of people stop by after church or call on the phone to see how I was doing and ask how they could help and to drop by goodies for our family! I feel so loved at this time! I hope that I can return the favors one day!

We carved our pumpkins tonight and then I Facetimed with my younger brother. Pretty cool technology!

I think my bowels are finally starting to work correctly again. Not a necessarily pleasant thought to think about (or write about), but I want to document what I am going through at this time. The Senokot has worked much better for me than the Miralax - just in case you were interested. :)

For some reason I had the hardest time falling asleep last night. DH and I watched a movie after the kids went to bed and it ended at around 12:30. We then went upstairs to bed and I could not fall asleep! I finally went downstairs and sat in the kitchen reading for a little while until I was super cold and too lazy to go downstairs to get a blanket. I think I finally fell asleep around 4:30...

Finally a Saturday with no soccer games! Today we need to clean, clean, clean the house and then if there is time, carve our pumpkins. I got out our old Halloween costumes to find something for Kay to wear and all of the kids thought it was fun trying on the old costumes. Most of them are homemade and it's fun seeing them on the younger kids. Luke was able to pull together a Jedi costume so I don't have to go out and try and find something for him at the store - Yea!

I made homemade pizza on the grill tonight. It's pretty fun to do and the whole family loves it (except for Blondie). For some reason, Blondie does not like any of the homemade pizza I make... We had a little bit of a grease fire in the grill that I finally used some baking soda to extinguish. Then I cleaned out all the built up stuff in the bottom of the grill before I attempting to grill the pizzas again. After we were all cleaned up from dinner and the kids were finally finished cleaning their rooms and assigned rooms, it was too late to carve pumpkins. DH and I decided that that would be an okay family activity for Sunday, so we will do it tomorrow evening.

I am in some pain from my milk still not having dried up. My chest is very tender and it kills whenever MJ leans against me. It has been almost 2 weeks since I last nursed her. I was mostly just feeding her on the left side here towards the end (she was never a great nurser on my right side) so I am tender on the left from that and then on my right side is where my port was placed so I'm also tender on that side! Hopefully one of these days I will be able to hold MJ to me and not have it hurt... Everything that I have read said to just let it dry up without doing anything special and it may take 2-3 weeks to finally dry up. I have been sleeping with an ice pack on my chest and that helps to relieve some of the pain.

I woke up feeling a little nauseous in the middle of the night but it passed quickly. I'm not sure if it was a side effect of the chemo or because my stomach was empty. I took one of my anti-nausea medications and ate a little something and then went back to sleep. Other then that I've felt pretty good all day. My relief society president is an elementary school teacher and she is currently off-track and has been wanting to help me out so I had her watch the girls for me this morning so I could run a few errands and do some grocery shopping without them. It was nice to be able to get out and get a few things done. I also picked up a different constipation medicine to see if it will work better for me. My insides are still not feeling quite right. Got some laundry done today. Unfortunately one thing that is never-ending in a family of 8!

Our neighbor who went through chemo came by this afternoon to lend me her hats and scarves. She also had checked out a book from the library for me that she said she used when she lost her hair. It shows you how to draw eyebrows on your face and other makeup tips to help you look more natural while going through treatment. She also bought the makeup pencils and brush for me at the store! Such a thoughtful person!

I woke up this morning and thought, "Wow! I finally have a clear head! I can think straight!" I realize that I have been really foggy brained the last three days and just couldn't put my finger on what was wrong. It's like my brain wasn't firing on all cylinders the last couple of days. (When I mentioned it to our neighbor who went through chemo she asked if I had ever heard the term "chemo brain". Apparently that is what I was experiencing.) I also finally had a good night's sleep. I sent DH to work and then sat around the house playing with the kids and trying to get some things done here and there. It's nice to finally be able to think clearly! M&M has her final soccer game this evening and I actually think I may go to it. I also have a stake auxiliary leadership meeting this evening. Maybe I'll feel well enough to attend that as well.

I load all of the kids into the car for M&M's game. The field she'll be playing at has a nice playground right next to the soccer field so it will probably be nice for the kids to get out and have some fun while we're there. DH will be stopping by the game on his way home from work. The weather is a little chilly at first and then gets really cold once the sun goes down. I end up leaving just after halftime because the kids are getting cold and they're not doing a good job of watching the little ones. I go home with the four youngest and warm up leftovers for dinner. MJ is starving so I'm having to feed her and can't take the time to get myself ready for my meeting. DH finally gets home from the game right at 7:00 (when my meeting starts). I turn MJ over to him and the older kids and run upstairs to quickly change and get myself ready for my meeting. I get there about 15 minutes late and wander around the building a few minutes trying to figure out where I am supposed to be. It's a good meeting. I'm glad I went. I had a TON of people come up to me afterwards and give me hugs and wish me well and tell me that I'm in their prayers and asking how they can help. It's been very overwhelming and touching how many people want to help me and my family. It's also very humbling to realize that I/we need those prayers and appreciate them. Somehow through all of this there is something that I need to learn and hopefully I will end up a better & stronger person.

Today I have to go to Huntsman to have my blood drawn. I slept a little better last night, but not great. M&M is supposed to have a meeting with a school counselor and one of her parents this morning to discuss what classes she wants to take over the next few years. I had already talked to DH about going to it with her and then going into work right afterwards. My parents are coming over so my mom can sit with the kids while my dad drives me to Huntsman. DH ends up just coming and working from home after the meeting at school. My parents came over earlier than I was expecting them and I haven't even gotten in the shower yet. Not quite feeling myself again this morning. I feel a little lightheaded again and have been a little nauseous again. I finally get in the shower and get myself ready to go.

We get to the clinic and I check in and then wait to be called back. At one point my dad said that the nurse that came out called my name so I got up and followed her. She took me back and weighed me and took my pulse and then took me into an examining room to take my blood pressure and she asked me a few questions about pain and how I was feeling. I was a little confused by all of this because I thought that they would just draw my blood and then I would be sent on my way. The nurse that was doing all of this said that she was a new nurse and she had another nurse with her who was making sure that she did everything correctly. Well, then she said, "Okay, you need to get undressed from the waist down and put this drape over your legs and the doctor will be in to see you in a few minutes."

I said, "Now, why do I need to do this? I'm just here for a blood draw for lab work."

The nurses look at each other. "Um, what's your last name?"

I tell her and she looks at her chart kind of puzzled and said, "Is your first name Leslie?"

"No, it's Stephanie," I say.

Apparently my dad heard a name that sounded like mine and since I was a little foggy brained that day and didn't even hear the nurse at all, I went with the wrong nurse! And not once did either of those nurses refer to me by name or ask me my name or my date of birth (which is something that they seem to be doing every five minutes they are meeting with you to make sure they have the right person). So my weight and pulse and blood pressure were all marked on someone else's chart!! (I just have to chuckle every time I think about this!)

Well, the nurse quickly takes me out of that room and has me sit down in a chair in the hallway while she figures out where I am supposed to be. She hands me over to one of the nurses that I recognize who draws blood there, but when she takes me to the regular blood draw area I mention to her that I have a port which is done in a separate room there. So she has me sit back down in the hallway and hands my orders over to another nurse. That nurse then takes my blood pressure (which is something that has to be done each week as part of the clinical trial I am in) and tells me to just sit and wait and then she walks off. So I sit and wait and sit and wait and finally after about 10-15 minutes I begin to wonder if they even know I am there. Just then the social worker from my oncology team walks by and recognizes me (and remembers my name even). She stops by to talk to me for a minute and I mention to her that I'm not even sure if they know I am here and she said that she would ask. It turns out that I was in the right place, but they already had a patient that they were currently working on so I just had to wait a few more minutes. Wow, what an exciting day so far!

Finally the nurse that works with ports comes out and gets me and takes me back where I will go from now on to have my port accessed each week. (And the first thing she asked me when I sat down was what my full name and date of birth were.) It was quite the sterile procedure - using gloves, face mask, all the tools straight out of sterile packing that they sit and open there right at the table. I put the numbing cream on my port before I left home so I didn't really feel any of it. I also didn't watch because I get queasy around blood and I have learned that I can't watch when I have needles poked into me or I will pass out. Every time I have to close my eyes and turn away and try and think about something else. It was quite weird knowing that she was poking into my chest though and I tried not to think about it while she was doing it. The nurse just had to draw one vial of blood and then she slapped a bandaid on me and sent me on my way.

I made my way back out to the waiting room where my dad was waiting and I sat down and told him that they hadn't called my name at all! He thought that that meant that I hadn't even been seen yet, but luckily that wasn't the case. (I hope the nurse that was training the other nurse felt stupid for that whole fiasco!) We then went back to the car and drove home. My dad then had to go and visit one of his patients (he spends several hours a week helping out some homebound people through a volunteer program) so my mom stayed to help out with the kids while I tried to take a nap. We had another dinner brought in that evening from the other counselor in the primary presidency.

Do not feel well at all this morning. I don't feel like even getting out of bed. Unfortunately M&M has a band concert at school this morning and I am supposed to go and video tape it. I already have someone lined up to watch the two little ones for me so I don't have to manage them, but I'm not sure if I can manage just myself at this point. Luckily DH sees that I am probably not going to be able to manage on my own today so he changes his plans and stays home from work and goes to the band concert. Then he comes home and takes care of the kids pretty much the whole day while I try and sleep. The constipation medicine has helped some but I still don't feel alright on my insides. I also can't think very clearly and have a hard time concentrating on anything. I also don't have much appetite. I force myself to eat here and there throughout the day, but nothing really sounds appetizing to me. I've had a few bouts of nausea but no vomiting at this point. The bishop's wife calls and emails me offering to bring dinner and I send her an email accepting the offer. I get several phone calls throughout the day but I'm not really in the mood to talk to anyone. I've never been a phone talker and I especially don't feel like being one now...

The dinner was great. The kids especially loved the homemade bread that was brought with it! We've had so many people in the ward offer so much to us already it has truly been a blessing! Hopefully I will feel better tomorrow...

Had another rough night last night. I really need to buy some medicine at the store to help me out. One of my goals today is to try and make it to the grocery store - a tall feat with just me and the two girls. The kids make it off to school just fine. I'm feeling alright other than the constipation so DH goes on to work again. I finally manage to get the girls dressed and then get myself in the shower. I almost give up on trying to go to the grocery store, but I finally pull myself together and manage to get a few of the essentials on the list. Unfortunately I for some reason forget to get the constipation medicine... I feel like I'm having a hard time thinking straight at times - I can't quite put my finger on what the problem is. The other item on my to-do list is to drive the carpool for the Youth Symphony group that M&M has rehearsals for on Mondays after school. I just have to pick the kids up after school and drive them to the rehearsal every other week. I'm not 100% sure I should be driving right now, but it's something I have to do today. Thankfully I get them there alright and get back home alright. I may need to look into changing that schedule on days where I'm not feeling well. Later that evening we take a family trip to the library. Afterwards DH thankfully makes a run to the store for me to pick up some medication. I hope it works so I can start sleeping at night...

Had a rough time sleeping last night. So far my biggest side effect of everything is constipation and I was very uncomfortable all night long and up every hour or two. When the nurse in the infusion room hooked me up to one of the drugs she said, this one will either give you diarrhea or constipation - apparently for me it's the constipation end of it. They recommend some over-the-counter drugs for it but I haven't had the chance to get to the store to get some yet. They also recommend that you drink more liquids, which I am trying to do, but my appetite and desire to drink hasn't been great since my infusion day.

I went with the family to a broadcast of Regional Conference at our local meetinghouse a block away. We were really surprised at how empty the building was for the broadcast! (I think it didn't help that it was the big fall break off of school weekend.) Thankfully the kids were relatively well behaved (with the exception of MJ at times) and there were some good messages given.

After we came home I ate a little lunch and then laid down for a nap. During that time Blondie came in to try and tell me that MJ had a dirty diaper and I shooed her out of my room and told her to tell her dad. Well, the next thing I know, DH is coming to check on MJ and her diaper has leaked and it has been smeared all over the carpet in the upstairs rooms... There's a spot in my room, all over the little girls' room, in the hallway and even down a few of the stairs... Why it took the kids this long to notice, I'm not sure, but it was disgusting... So we spent what should have been a relaxing Sunday cleaning up and steam cleaning the carpets (we have a Bissell, deep cleaning vacuum).

Once that chaos was finally under control we headed over to my parents' house for Sunday dinner. My sister and her family were also there so we had a nice visit with them and then it was back home again so the kids could get all of their school stuff together. Tomorrow the elementary school kids finally go back to school after their 4-week off-track break. I'm not sure if that's a good thing or a bad thing at this point. It will be nice to not have all the chaos of the 5 younger kids at home, but it will also be sad to not have the older ones around to entertain the youngest two and help out with them. I'm not sure how much energy I'm going to have to deal with them by myself for the whole day.

When we got home from my parents' house we had 5 little plastic pumpkins on our doorstep with candy in them for the kids and a vase with a single white rose in it. We found out later that the pumpkins were from a good friend in the ward (the stake president's wife) and the rose was from the last rose from the yard of our recently released Relief Society president who also brought us some funeral potatoes that we had with dinner the following day. We also got a call from another aunt of DH's who stopped by to talk with us and let us know of their love and care.

DH has a cousin getting married in the Salt Lake Temple this morning, but I send him by himself - I'm not really in the mood to socialize with the extended family right now and I don't want my known condition to detract from the happiness of the event. Today is also supposed to be the last soccer games of the season, but M&M's game is postponed until next week sometime... I go to the other two games - one win, one loss. I enjoy watching the kids play soccer, but I'm ready for it to be over for the season.

After the games I lay down for a little bit and then decide I'm feeling well enough to go to our adult session of Stake Conference. DH will join me at the end because his cousin's wedding reception is also at the same time and he feels a family obligation to go and support his cousin. I arrive a few minutes late to the conference and sit in the back on a folding chair. Unfortunately I wish I had chosen a seat closer to the door because after sitting there for a little while I start to feel a little light headed and not sure if I can stay sitting upright. I really just want to go out in the foyer and sit on the couch out there so I can rest my head for a few minutes, but I'm not sure if I can make it without passing out on my way. I keep sitting there and checking my cell phone and hoping that DH will show up at any minute so he can help me out. I finally get a text from him asking it it is still worth it for him to come. I quickly respond, "yes". He still doesn't show up and then I notice that I have two new messages from him - how did I miss that first one? The first one was saying he just pulled into the house, should he still come and then the second said that he was sitting right behind me. I turned around and didn't see him anywhere. Finally after looking several times I spot him about 10 rows behind me on the other side of the row - not quite the "right behind" that I was expecting. At this point we were on the closing hymn and somehow I was still sitting upright. After the prayer, he came up to me and I said I wasn't feeling well so he helped me up and we quickly hurried for the doors. Once we got outside to the cool air I felt a little better and we only live a block from the church so we were home within a couple of minutes. On our way up to the front door one of my neighbors who went through chemotherapy for breast cancer a couple of years ago was passing by our house on her way home from the meeting as well and asked if I had a few minutes to talk to her. Ever since I was first diagnosed with cancer her name immediately came to my mind as someone that I should talk to about her experience and someone that I could ask questions of since she has been through something similar. It was good, but emotional to talk to her. She has offered to lend me her hats and scarves and even her wig if I want to try it out. I'm sure I will have more questions for her as I go through all of this. (I did really enjoy the talks from the conference though - and I even took notes during the talks. Partly to keep myself conscious and try and get my mind off of how poor I was feeling...)

Woke up feeling alright and all the kids were home from school so DH went in to work. Spent some time cleaning and organizing and doing laundry - nothing too exciting. My port still looks and feels pretty gross. It's still tender to the touch and seems to poke out an awful lot more than they led me to believe. Hopefully it won't stick out so much once the healing is done.

Chemo Cycle 1
My infusion appointment is for 10:00. I had to take 5 steroid pills before bed last night and 5 more this morning. My parents come over again to watch the kids. They have definitely been a lifesaver during all of this. We check in at the infusion desk and then take a seat in the waiting room. I take a look around at those that are there with me. There is a wide range of ages. One younger looking man is there with his wife I assume. We have seen him working in the parking garage. DH heard him give his birthyear as 1971 when hr checked in, so a few years older than me. A lady comes through pushing a cart with small juice cans and snacks on it and makes the rounds asking if anyone wants anything. I get an apple juice and a bag of peanuts. DH also gets something.

After waiting for a few more minutes they call me back into the infusion room and show me to my chair where I will spend the majority of the day. It's kind of a lounge chair where I can fully recline if I want. They see that I have a port and ask if we will be using it today. I said that the doctor wants to wait since I just had it put in on Tuesday. They look at it and agree and then get someone over to put an IV in my vein. Apparently they start at the hand and then work their way up the arm until they find a good spot. Mine they put in right around the wrist on my left arm. They tell me some warnings to watch for that indicate that the IV spot is potentially going bad or leaking out - a burning or stinging feeling. It turns out that the nurse that will be serving me today is the same one who introduced herself to us last week when we came by to visit the room. She was a really nice and friendly nurse who talked us through everything she was doing. There were several medications that she had to administer to me through my IV before we start the chemo drugs. The reason they do these first is to hopefully counter any side-effects that I may get from the chemo drugs. We're all a little unsure how I will respond to any of the drugs because I am the type of person who only takes medicine if I feel I absolutely have to. The first one that they gave me was Benadryl (which I have not taken in recent memory because I don't have allergies to anything that I know of). It turns out that this was the only drug that I showed any type of reaction to. I felt really loopy and light-headed for about 45 minutes or so and then that wore off. After the Benadryl they gave me Pepcid and then more steroids. They then waited about 15 minutes before we actually started on the chemo infusion - which we didn't start until about 12:15!! Then it was 3 1/2 hours of the first drug, flush the bag and then 1 1/2 hours of the second drug with another flush of the bag. Then I think they just gave me some saline through the IV. The second drug they started out really slowly because it can cause some reactions, but when I didn't show any they increased the rate. Overall I think the nurse was pleasantly surprised that I didn't appear to have any reactions to anything (other than the Benadryl) and that I felt relatively fine at the end.

Wow it was a long day! I had brought some reading material and then my ipad so I could start this blog. I ended up not reading anything, but I did write several blog entries. Towards the beginning we kept having people come in to talk to us. The lady in charge of the clinical trials came and gave me my appointment/infusion schedule for the next couple of cycles and then a lady came and asked if I would sign up for another trial they are doing where you call in each day and answer questions about the symptoms/problems you have been having and then offer solutions to help you deal with them. There is a small monetary stipend that they give you for participating. I agreed to do it and I was "randomized" into the group that gets follow up calls from a nurse practitioner if you trigger certain alerts with the computer system. She thought that was the better group to be in. Then we also had another person come in and hand us some financial help info in case we need it.

DH stayed with me the whole time - only leaving twice to get us some lunch from the cafeteria upstairs (once to take some pictures of the menu for me and then the second time to get our food). I can eat or drink anything I want while I'm there and can have up to two visitors at a time. The snack cart came by once or twice to see if we wanted anything and they have a small refrigerator with some drinks in it as well. They come by about every hour to take your blood pressure and temperature - man that blood pressure cuff hurts sometimes!

By the time we were done, it was almost 5:00!! It was depressing seeing people come in and then leave while I was just sitting there the whole time! And because of traffic and construction we didn't make it back home until after 6:30! Thankfully an aunt and uncle of DH had offered to bring us dinner that evening so when we got home we had dinner there waiting for us. It's been nice having people offer to bring us meals so that we would have one less thing to worry about!

After all of that I was a little tired just from everything that had gone on that day, but I didn't have any trouble sleeping that night.

My parents came over to watch the kids while we went to Huntsman to meet with the oncologist and do the initial baseline lab work. The appointment ended up taking longer than we thought it would and then we had to wait around to get all of my prescriptions filled. I have a steroid prescription that I have to take the night before and morning of my chemo and then for the first several days afterwards. I also have a couple of anti-nausea medications if needed and a cream to put on my port to numb it up before they access it. I think that the total price ended up being less than $10 for everything - thank goodness for insurance and generic brand drugs...

They took a look at my port but feel it is too early to use it yet. I will get my first dose of chemo through an IV in my arm tomorrow. Plus it's still pretty tender and sensitive to the touch.

I still can't believe that all of this is for real... I keep thinking that I'm going to wake up and find out that this is all just a bad dream. This is something that I should not be having to worry about at my young age with such young children! In so many ways this would all be so much easier to deal with if it was just me and DH and our kids were older and grown...

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.

Went to church again. Managed to make it through with only tearing up once. People are finding out more. It's nice to have people that are willing to help when needed and are praying for you - very humbling... The former counselor in the primary presidency that I just replaced found out at church today (her son who was my age just passed away from brain cancer). She has offered to do Sharing Time for me if I ever need it, or to help out any other way she can.

Found out after church that the Stake President (who is in our ward) announced my condition in his stake meetings this morning. Luckiily most people are asking DH about me - it's still a really hard thing for me to talk about.

Went to some of the kids' soccer games again. It was a pretty low key day.

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.

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.

Later on that afternoon I called the person in charge of the clinical trial at Huntsman and asked what our next step was now that we had the officlal word from the biopsy. She setup an appointment to meet with her the next day to sign some papers and start the ball rolling toward treatment. While it was upsetting to officially hear that I have stage 4 cancer, it is nice to finally know what we are dealing with so we can start fighting this.

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!

Meeting with my cancer team at Huntsman Cancer Institute. It feels a little weird meeting there when I don't have the results from the liver biopsy yet. My oncologist said she would call me with the results as soon as she heard, probably within a day or two of the biopsy. We had my cell phone out through the whole appointment hoping that we would get a call from her while we were there. Unfortunately we didn't. The meeting was really lengthy and involved. We received a ton of information and handouts, even a 3-ring binder with lots of information as well. They went over the information they had received from my oncologist at St. Mark's Hospital (Dr. Rhode) and went over the results as they saw them. One of the tests that I wasn't told the result of was a blood test called CA-125. This is a test for a specific marker in the blood that is consistent with ovarian cancer. The normal results are 35 and under, my number was over 5000... The medical team was pretty sure that I had cancer, but until the official results of the biopsy we would not move forward with any treatment. They discussed with us the clinical trial that they are currently conducting, but even without participating in the trial I would still have the option of receiving the same treatment. The trial basically consists of the patients being treated for ovarian cancer to be divided into two groups. The first group receives the standard chemo treatment every three weeks. The second group receives the same treatment, but one of the drugs is divided up and a third of the dose given each week, instead of all at once every three weeks. The study will monitor the side-effects experienced by the two groups to try and make a decision on which treatment is better overall, taking into account the quality of life and the effectiveness of the treatment in treating the cancer. Also as a part of this study you can opt to receive a third drug during your infusion which is an antibiotic to specifically target the blood supply to the cancerous tumors and kill them off and prevent them from forming. This drug is offered free of charge through this study and if the side-effects are too severe, you can choose to opt out of this at any time. They sent us home with all of the information and told us to call back with our decision after we get the results from the biopsy.

Another thing that they mentioned to us was the possibility of having a port-a-cath implanted in my chest so that I can have blood drawn through there and receive the chemo infusions through it instead of being poked in the arm each time. The weird part was that before they came in to talk to us DH was joking to me about possibly having something permanently installed in my arm so I wouldn't have to keep getting poked. They gave me a handout about it and talked about the advantages of it and that it is all under the skin so all you really see is a slightly raised circle where they would attach the needle each time (and you numb it up beforehand so you don't feel any of it).

All of this was somewhat overwhelming! They even gave me a catalog of hats, scarves and wigs to look through for when my hair falls out (typically 2-4 weeks after the first chemo treatment). The girls were quite interested in looking through the magazine to help me pick out a wig. The synthetic wigs are surprisingly cheap - only about $45 for a shoulder-length hairstyle. I really can't see myself wearing scarves, but there are some really cute hats in the magazine.

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.

I woke up feeling fine on Sunday so I decided to go to church. What better place to be then at church with my family on a Sunday? I have a hard time staying home when I can be with them and I am feeling alright. Plus I knew that not many people are aware of my situation at this point so I wouldn't be approached by too many people. I haven't told the rest of the primary presidency at this point so there were a couple of awkward moments where I was being a little non-committal about some things coming up in the next few weeks and wasn't quite sure how to respond to some questions. Other then that I only got a little teary when the Relief Society President came into primary and gave me a hug and said it was good to see me there.

After church I decided to email the rest of the primary presidency to fill them in on what was going on with me health wise. Other than that I haven't told many people yet. Still waiting on the official diagnosis from the biopsy scheduled for Monday.

Later on that evening I had some really severe pain in my abdomen/back/hip/leg all on the left side. I was finally able to get it under control with some acetaminophen and a heating pad. I think the ovarian tumor is able to move around inside of me and with all of the testing and manipulating I had done to it the previous week I think it got moved into a spot where it occasionally sits on the nerve going to my leg. While I was in my bedroom trying to manage the pain, DH had a family meeting with the kids to let them know a little what was going on with me and that I would probably have to go through some treatments that will make me sick before I will get better again. He also mentioned that my hair would most likely fall out and that really got the attention of a few of our girls, especially Blondie. He stresed the fact that the kids are going to have to step up some to help more around the house while we deal with my health issues. We feel that it is important to be upfront and honest with the kids so they aren't afraid to talk to us or ask questions. My only concern is how open they will be with sharing the news with others and what they will say based on their limited understanding!

Went to the kids' soccer games. I knew at this point that not many people know what's going on with me so I am able to fake it all pretty good. The kids are all on teams this year with friends from the neighborhood which is nice, but also causes me to run into people that I may not be ready to face yet. Our bishop was at Luke's soccer game and at one point I was moving my chair to be closer to the position Luke was playing and he came up to me to talk to me a little. I was able to stay pretty well composed and we just talked about the latest news and testing that I had coming up. He also has been letting me know (mostly through my husband) that I don't need to feel obligated to come to church if I am not able. At this point I hadn't quite decided if I would attend the next day or not.

By this time my parents have informed all of my siblings as to what is going on with me (of which they told me after the fact). I got a call Saturday night from my oldest sister wanting some clarification on what she had been told. After that I sent an email to all of my family letting them know all the details so they could have all the facts straight. At this point the only one in DH's family that knows is his father. His mother is currently out of town visiting his sister and it was decided to wait until she returned from the trip to inform her of my condition.

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.

Pretty much an emotional wreck off and on throughout the day. DH stayed home from work to be my support person. The soonest they can get me in for the breast MRI and chest CT scan is Friday so it is a pretty low key day. During this whole time the kids are off-track (except for our oldest) so it's difficult in some ways to get some peace and quiet. At this point we decide that I need to wean MJ, our one year old. This is a pretty emotional decision for me because I have loved nursing all of my kids and have nursed all of them to at least 18 months (MJ is almost 15 months). She doesn't really need it anymore, it is more of a comfort thing for her. She loves to be nursed to sleep for naps and bedtime and then throughout the day, especially when she is upset. I also have lots of thoughts throughout the day about possibly not being around to see the kids grow up and them having to deal with me being sick as I go through treatments. I get the most upset when I think about everything the kids and my husband will have to go through as I deal with this illness.

I spent some time doing some cleaning and organizing of our storage room and getting Halloween decorations put up throughout the house. This kids really enjoyed doing this and it was fun watching their excitement over all of the fun decorations and wanting to help. I figure while I have the energy I need to get as much done as I can to get the house in order before I am laid up from the upcoming surgery.

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...