On Wednesday I had another Avastin infusion.  My last 3 weeks have been crazy again and there hasn't been a lot to blog about on this blog.  I pretty much feel just fine all of the time.  My feet for some reason feel a little sore when I first get up in the morning, but usually after a few minutes of walking around they feel fine again.  Sometimes when I am sitting in one position for a while I am a little stiff when I get up, but I'm not sure if that is just old age :) or a longer term side-effect of the chemo.

Wednesday was the first day of school for my elementary school kids.  At first they had my treatment scheduled for the afternoon, but I wanted it early so that I could be sure to be home when the kids got home.  I decided it might be nice to take M&M with me to one of my infusions before school starts for her so that she can see what it is like.  Technically visitors are supposed to be at least 14 years old, but I figured she was close enough since her birthday is in just a couple more days.  And I knew that she wouldn't be a distraction to anyone there.  The only problem was what to do with my younger two kids.  At first we thought that DH could just work from home but he had a dentist appointment the following day so we weren't sure if he should miss both days.  After talking with my parents we worked it out so that DH could drop the two little ones at their house on his way to work and then I would pick them up afterwards.

My appointment was for 9:30 a.m. and we got there right on time.  After getting called back into the infusion room they accessed my port and then we sat waiting and waiting and waiting...  And unfortunately we had probably the worst seat in the room.  We were all the way on the far end and all we could see out the window was a little part of the sky and a brick wall.  We decided to turn the T.V. on and found a soccer match - the U.S. Women vs France - for one of the Olympic qualifying rounds.  At one point I asked my nurse what was taking so long and she said that unfortunately because of the holiday the day before (Pioneer Day), they were a lot more busy than usual.  She said that they were open on Tuesday for Pioneer Day, but they had a total of about 14 patients for the whole day.  Most people rescheduled for either the day before or the day after.

Finally around 11:20(!) the nurse brought the Avastin to me and hooked me up to it.  We got out of there around noon.  I took M&M upstairs to show her around the building a little.  Then we went down to our car and drove to my parents' house to pick up Kay and MJ.  We stopped at McDonald's on the way there to pick up some lunch.  I'm glad that M&M was able to come and share the experience with me before she starts into a crazy schedule of marching band and school!

This afternoon I had my doctor's appointment, lab work and Avastin infusion at Huntsman.  My parents were out of town so we ended up just having DH stay home with the kids while I went by myself.  I knew ahead of time that we would have some conflicts and since I haven't really had any adverse reactions to the Avastin infusions we decided that this would be the easiest solution.  A couple of weeks ago I signed up my older kids for swim lessons, knowing that we might have a conflict this week.  I had to give DH quite a few instructions on how to go about getting the kids to their lessons and we discussed what he should do with the younger kids.  He ended up just dropping all 4 of the older kids off at the rec center and then went to a park that is adjacent to it for the younger kids to play at and then he stopped back to pick them up after the lessons were over.  I was hoping that I might make it back in time to pick up the kids from lessons so that DH could go home, but it didn't happen.

I ended up having a really good visit with my "team" at Huntsman.  It was a much more thorough visit than I have had the last couple of times which was nice.  They were able to answer some of the questions that I had and we discussed my next few treatments - and possible conflicts with an upcoming family vacation.  As a part of the study I am on, I will be having complete chest/abdominal CT scans every 3 months (at least for this first year).  I will be on the Avastin indefinitely.  The doctor told me that she would love to have me on it forever because that would mean that it is doing what they hope it will do and keeping the cancer away.  I am free to stop it at anytime if I want and I think that they can stop the study at anytime that they want as well.  So until either of those possibilities happen, I will be receiving the Avastin every 3 weeks.

Everyone at the clinic was commenting on my hair and how nice and evenly it is coming in.  Apparently with some people it comes in in patches.  My nurse practitioner also asked about my family and if I had any pictures of the kids.  They've never asked to see one before so I pulled some up on my ipad and told them the names and ages.

After the appointment I had my lab work drawn and then went over to the infusion center.  It took a while for them to call me back and then for some reason it took forever to get the Avastin again...  My infusion appointment was set for 3:30 but I don't think they started the infusion itself until around 4:30.  Once it started it went pretty quickly and I was home around 6:00.

This morning my dad came with me to my Avastin treatment. We got there right on time at 9 a.m. and after we checked in they took me back and accessed my port to draw my labs. We just sat there waiting for a while for my lab results to come back. After a little while my nurse for the day came to me and said that my blood levels were kind of low again and my doctor's nurse was offering to give me 2 units of blood if I wanted them. I was a little confused for a minute or two and asked if my levels were high enough to be treated. The nurse said yes, they were high enough and the other nurse was offering me the choice if I wanted it. After thinking for a minute I decided to decline the blood. She went back to the phone and told my doctor's nurse that I didn't want the blood and she came back with the response that if I was feeling really tired over the next day or two to call in and they would arrange for a blood transfusion. I asked the nurse for a copy of my lab results so I could look at them and she said she would print them out for me once they were all back from the lab. After some more waiting the nurse brought me the printout and I was surprised to note, after comparing it to last week's results, that my platelet count had gone up from last Wednesday, but my white and red blood cell counts had gone down slightly! I decided to call DH (who was working from home today while watching the kids for me) and we discussed whether I should get the blood transfusion. After talking it over for a few minutes we decided that if my levels were at critical levels, they wouldn't give me the option and my levels would be too low to receive the treatment. So I got off the phone with DH and then we sat there waiting again. A little while later the nurse came by and said that the head of the trial that I am on had called and given the okay to give me the infusion. So I guess at that point they put in the order for the Avastin to the pharmacy and then we had to wait and wait and wait some more before they finally got the drug from the pharmacy. They finally started my infusion more than 2 hours after I got there... The infusion itself lasted 30 minutes, then they had to flush the bag with saline solution and then we seemed to wait some more for no reason once again. The nurse finally came by with the flush for my port and finally was able to de-access me and send us on our way... We didn't leave until about 12:15! We were there for over 3 hours for a 30 minute infusion! While we were there I got a call from DH saying that he had received a call from work and things were not well and that he needed to get down there as soon as possible. Since Luke was home and my dad and I were hopefully going to be leaving soon, I told DH to just go and we would be there soon.

So my dad and I finally left for home and we got there and I had about 5 minutes before I had to leave for my mammogram which was at a different clinic. I sat with MJ for a few minutes and grabbed myself a quick snack to eat and then left my dad with the kids while I left. I got to the clinic just in time and I was surprised with how quickly everything went with the mammogram. I had to fill out a paper when I checked in and then they took me right back to change into a gown and then the technician took me back for the scans and then I was through. I was in and out of that clinic in about 15 minutes - it was awesome! And I didn't think that the mammogram was that bad at all. I would take that any day over doing a breast MRI or even going to the dentist!! The technician said that they would be sending the results of the mammogram to me and to my doctor as well.

After I got home from the mammogram I laid down for a few minutes and then I had to leave to drive the orchestra carpool for M&M and some of her friends from school. By the time I got home from that I was exhausted! Whew, what a busy day!!

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

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

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

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.

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.