Not a lot happened yesterday. I've had some severe cramping in my lower abdomen, but that has to do with some female issues that I wasn't supposed to have to deal with anymore. I will have to ask about that when I see the doctor next Wednesday...

Today the cramping has lessened some and M&M is home from school for thend of the quarter. I took her to get her pictures taken at J.C. Penneys and then we did some clothes shopping there. She has recently grown out of just about all of her jeans and we were able to find her several pairs there as well as some other things so it was a very productive shopping trip. We put away the Halloween decorations and got out the Harvest/Thanksgiving ones.

Later on Luke, Blondie and Kitty had piano lessons and I went grocery shopping while M&M watched the little girls. I also picked up a movie from Redbox which we watched later that evening. I'm trying to get as much done as I can while I am still feeling well! I figure I have until next Wednesday and then we will start the process all over again.

The incision for my port has been bothering me today so I put a big band-aid over it. Now hopefully my clothes won't irritate it anymore while it is trying to heal.

I think I finally slept well last night and went to sleep at a decent hour again. I also didn't notice any significant hair loss this morning after my shower. I took off the last of the surgical tape over the incision where my port was put in. It is a larger incision than I thought it would be - probably a little longer than an inch across. The tape has been rubbing against my clothes and been kind of annoying which is why I took if off the rest of the way. It is a little tender still, but feeling better than it has.

My parents came by this morning so my mom can watch the girls while my dad takes me to Huntsman for my blood draw. I feel well enough to drive myself, but he wants to drive me. This time it is a very quick, uneventful visit to Huntsman. I checked in at the desk and then sat down for about 30 seconds before they called me back. They immediately took my blood pressure (which was a little high) and then she had me sit down for about another 30 seconds and then the nurse came out to take me into the room for my blood draw from my port. She was getting it all setup to access my port and was about to poke me with the needle when I realized that I hadn't put on the numbing cream before I left home! I thought about saying something because the nurse last week told me that if I ever forgot they could put some on there before they access the port. I decided just to suck it up and try it without anything - and I hardly felt it at all. It felt a little sore on my way out of the office, but I think it was just from the pressure of it being pushed on and still in the process of healing. I don't think I was there in the office for more than 15-20 minutes total.

The ward has arranged to provide a meal for us each Wednesday so we had one brought over by some neighbors of ours. I love the homemade breads and rolls that people have been making for us!

My milk is almost completely dried up - finally! I can now hold my little girls on my lap without it hurting me!

Filling in some blanks:

Here is some info that I forgot to add to some of my posts. I will add it to the correct day, but wanted to add a separate post for those that are already up-to-date on reading my previous posts.

Monday, October 17
I got a call this morning from the director of Sounds of the Season. I was going to email her today to let her know what is going on with me, but apparently someone beat me to it. I have been debating what to tell her and what to do about it this year. I would love to play with the group again because it is something that I really enjoy doing, but I'm not sure if it is something that I will even be able to do this year. Plus it is looking like my surgery will most likely be scheduled sometime in the first week or two of December - right around the performance time of the group. Well, the director basically told me that she doesn't want me to participate this year because of everything I will be going through and that I need to just focus on myself and my family and getting myself better so that I can come back next year. I am kind of sad, but know that this is for the best with everyone's best interest in mind. The last thing I want to do is have them plan on me to play with the group and then not be able to do it when the time comes.


Wednesday, October 19
I got my first flu shot today. I asked DH on our way to Huntsman if he thought that the doctor would want me to get a flu shot with everything that will going on with my immune system during my treatments. Well, DH asked the doctor while we were meeting with her and without hesitation she said, "Yes, we'll do that right now." So the nurse went off and got the papers for me to sign and gave me the shot right there before we left. I didn't even have time to think about it. DH also decided that he should probably get a shot as well this year so he did a couple of days later at work.


Thursday, October 20
Before I left the infusion room they gave me a shot of something that is supposed to shut down my ovaries. One of the absolute worst things that could happen right now would be for me to get pregnant while I am going through chemotherapy and having all of these drugs pumped into my body. They said that one of the side effects of the shot can be hot flashes - basically like I am going through menopause. What fun! Not only do I have the chemo drugs in me that will have who knows what side effects on my body, but I also may have menopause like side effects from this shot!


Friday, October 28
Today is the first day I have worn jeans in a while. I have mostly just been lounging around the house in sweats and workout type pants. I have lost some weight because the jeans that I usually wear are practically falling off of me. I think it a combination of not having a big appetite lately, stopping breastfeeding and hopefully the tumor shrinking...

I think I need a new pillow. I finally went to sleep at a decent hour last night, but I don't think I slept too well and I woke up with a headache. That's always bad news for me. It usually means that my neck is out of whack and the headache will get progressively worse throughout the day. I also had some weird dreams last night about waking up and finding clumps of my hair had fallen out in the night... I am able to manage through the day without taking anything for my headache, but then take some Tylenol before bedtime. I didn't take a nap again in hopes that I will get another good night of rest.

When I showered and brushed my hair this morning, I didn't notice any hair coming out so I am crossing my fingers! Hopefully cutting my hair will slow down the process. I'm nervous to even touch my hair during the day for fear that too much contact will make it fall out quicker!

A friend watches the girls for me this morning so I can make a run to the store again. It is definitely a much easier task without my kids with me. It's a pretty normal day for me and I feel fine. How can I feel so normal and healthy with something so deadly inside of me? It just doesn't seem possible...

I get an email this afternoon from the company I ordered the wig from saying that the package has been shipped! Talk about quick service!! I'm nervous/excited all at the same time. The estimated delivery date is next Monday.

We had a primary presidency meeting this evening. Wonderful ladies that I serve with. It is definitely a frustrating calling at times though! We seem to have so many callings that we are always trying to fill and not enough people to pick from! We have a lot on our plates to deal with and lots to prepare for when the kids all move up classes in January. I hope I am able to stay healthy enough to fulfill my calling and not need to be released. Right now I am able to manage just fine, but unfortunately I know that there are many rough days ahead of me. I know that it is a concern of the bishop (and stake president), especially since our president is dealing with her own major health issues.

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.