Made it to my infusion this morning.  Everything went pretty smoothly and no problems there.  My blood pressure was normal and there were no problems with my port.  The nurse did ask why I cancelled last week and so I told her that we had a stomach bug going around the family.  On my way home I got a call from the nurse that works with my oncologist letting me know that my mammogram came back negative - so that was some good news as well.

Went in for a mammogram today.  I was able to schedule it at the clinic near my house again so it was a pretty quick drive there and then a pretty quick procedure.  My appointment was set for 1:20 and I got there a few minutes early and was out of there by 1:30.  I should get the results from it in a few days.  I always find the paperwork that I have to do a little annoying though.  They should be able to easily look up all of my records up to this point and the fact that I have to fill out info about why I am having the scan done and if anyone in my family has had breast or ovarian cancer seems a little redundant.  There was also no where on there to mark that I have ovarian cancer.  The questionnaire asked if this was a routine scan or a result of some recent breast abnormalities so I marked routine scan - which it is at this point.  I also think they should add a question asking if the person knows if they are BRCA-1 positive or not.

I was supposed to go in for an Avastin infusion yesterday, but woke up sick to my stomach and not in much of a condition to go anywhere.  I got up around 5:30 in the morning and ended up spending some time in the bathroom dry heaving and then went back to bed until around 10:30...  The kids have been passing a sickness around and I guess it was my turn to have it...  They just pushed all of my appointments back a week so I will go in next Wednesday for my infusion instead.

One of the worst things that can happen to someone who has been through a cancer experience like mine is to hear a message on their answering machine from their doctor's office that they are not expecting...

I came home from running some errands this morning with my two youngest to find a message on my answering machine from someone at my surgeon's office asking me to return their call.  This was a very unexpected call and I immediately returned it when I heard the message and I got the office's answering service.  The lady told me that they were at lunch so I should try calling back after 1:00 (it was about 12:15 at the time).  The only thing that I could think as to why they would be calling was to possibly discuss the results from my latest CT scan.  To this point I had not heard the results of the scan and my husband and I had talked about it just the day before and that we thought it was strange that I hadn't heard anything from Huntsman about it.  I had mentioned that I would try contacting someone in the office if I didn't hear anything in the next day or two so I took the time while I was waiting to talk to my surgeon's office to email my nurse practitioner at Huntsman asking about it.

So fast forward to 1:00 and I try calling the surgeon's office again and again I get the answering service.  The lady tells me that they haven't switched over the phones yet so to wait a few more minutes and then try again.  So I wait a few more minutes and then 15 more minutes and then I call again at 2:00.  Still no response from the office.  I asked the lady with the answering service if I could just leave a message for them to return and she said that they usually don't check with her for any messages - so what is the point of having the answering service?!?!?  At 2:30 she told me that they were in a meeting until around 3:30.  What?!?  This was getting ridiculous!  (And unfortunately my husband was at a genealogy conference downtown and I didn't want to get him all worried and possibly worked up over what would hopefully turn out to be nothing...  The thought did go through my mind though that if my surgeon wanted to see me in her office that afternoon - which would most definitely mean bad news - I would try and get ahold of my husband and possibly pick him up on my way there.)

Around 2:00 my phone rang and I was hoping that it was the surgeon's office (although up to this point they don't even know that I have been trying to call!).  It turned out to be my study coordinator at Huntsman and she apologized for not calling me about my CT scan results.  She said that she thought that the nurse had called me and apparently the nurse thought that the study coordinator had called me...  She said that she had the results back the same evening as my scan and that everything looked good in it!  She said that one of the "scar" areas in my liver had shrunk in size which is good news as well - my liver is still healing from the two areas that were resected.  I asked her if she knew why my surgeon would be calling and she thought that it was probably just a follow-up from my last visit - just a guess though.

So I finally called the surgeon's office again around 4:00 and finally was able to talk to the person who had left me a message at 11:30 that morning...  She said that she had a note to remind herself to call me with my results from my pap smear that had been done at the beginning of the month - of which I had already been called about a couple of days after my appointment.  She thought that she had just left a message on my answering machine with the results, but I remember talking to someone from the office about it.  And everything had been normal with the results...

I was quite exhausted by the end of all of that!  What a nerve wracking afternoon it had been for me!

I got a call from Huntsman this morning to let me know my CA-125 number.  It was 17 this time, so up from my last count of 15 back in January, but it is still well within the normal range.  They said that it will most likely fluctuate up and down a little each time and that that is normal.

So after my infusion was finally finished up at Huntsman I quickly hurried home to pick up a Crystal Light packet and some sweatpants and then headed out the door to hurry to the South Jordan clinic.  I got there and checked in and asked to pick up the gastro contrast for my scan.  The receptionist went to check and see which contrast to give me (gastro or barium) and she came back and said that the tech wanted to do the barium.  I asked if I could have the gastro because I don't like the barium.  So she went and asked again and came back and said that I would have to take the barium.  So she pulled out the barium and started to mark on it and after thinking about it for a minute I said that if I was going to be required to take the barium then I just wanted to cancel my CT scan and I would make an appointment at a later date back up at Huntsman.  I was quite ticked off about the whole thing and on my way out the door I called my parents to let them know that I was coming back home.  When I was making my way out the front doors of the clinic the receptionist chased me down and said that they were going to do the scan with the gastro - that that was going to be alright.  When I went back into the waiting room the radiologist was there apologizing profusely to me that she apparently had been trying to make a joke with the receptionist and the receptionist had taken the answer literally.  So I will hopefully be having the scan here in the next little while.  All I can say is that I wasn't a very happy camper and I'm glad that I complained about it enough to make them change their mind.  And as it turns out the SJ clinic has the drink mixes that they give you to mix with the gastro so you don't have to use your own.  Although I think I prefer the lemonade versions that I have to the cherry flavor that I picked.  :)

I came in to meet with my oncologist today and she is apparently doing rounds at the hospital so they told me I would be seeing the nurse practitioner, but then one of the oncology fellows visited with me instead.  It was a pretty quick visit and everything appears to look good right now.  They asked about scheduling my next CT scan and mammogram.  While waiting in the infusion room the study coordinator came and asked if I could do the scan later today after my infusion...  So now I need to not eat or drink anything for the next 4 hours so I can have the scan done.  I asked about my port access because they usually put a different type of tubing in when I am having a scan so they can administer the IV contrast through it.  The coordinator went and asked about it and they said that my tubing will work fine I just need to tell the radiologist so they can push the IV medication through more slowly.  Thankfully my mom is able to stay later at my house.  I hope the girls are being good for her...  I will be going to the U of U satellite clinic for the scan.  I have had my mammogram there before and that is where I saw my dermatologist, but I have never had a CT scan there before.  I also have never had them use my port there so hopefully everything will go smoothly with this.

Had an appointment at my surgeon's office this morning.  I thought I was supposed to visit with my surgeon but I just met with the nurse practitioner.  Everything is looking and feeling fine so nothing to report there.  I will return in 4 months for another follow up visit.

I seem to be quite distracted today for some reason.  I left for my appointment a little later than I wanted to just because I wasn't paying attention to the time.  Then on my way I accidentally took the wrong exit and had to take the side streets to get to the surgeon's office which took even longer.  I ended up being about 10 minutes late which was annoying to me.  I don't like to be late to things.  After the appointment I was on my way home and almost missed my exit.  Then I wanted to stop at the grocery store on my way home and got to the light where I needed make a left turn and forgot to get in the left turn lane...  Hopefully I will get over whatever is distracting me so I can be more engaged tomorrow!

Not much to report on my infusion today.  I got there on time and nothing really happened out of the ordinary.

Got a message from Huntsman on my phone today letting me know the results of my CA-125 test.  It is now down to 15!  The nurse said that in November it was 19, then jumped to 17 at my December test and now it is 15.  I am enjoying seeing that number continue to go down!

Had an appointment with my nurse practitioner at Huntsman (the doctor is out of town) this morning, followed by my Avastin infusion.  Everything looks fine with my lab work and blood pressure.  I was a little worried at first when the nurse practitioner came into the room because she had such a concerned look on her face, but the first comment out of her mouth was her asking how a family member of mine is doing who has been diagnosed with cancer.  I thought that that was very touching!  She said that she has been thinking about this person a lot (I mentioned it to her the last time I saw her in December).   I got to the infusion room about 30 minutes early and when they called me back it took quite a while for the lab to send the Avastin down - almost an hour of waiting in the infusion room before it came.  At one point the nurse called the lab to find out what was going on!  Then the machine that I was hooked up to kept beeping saying that there was a problem with my tubing but they couldn't see anything wrong.  I think it beeped about 4 times on me.

We had a snowstorm come through yesterday and more of it today.  DH was able to stay home with the girls and work from home today so that my mom didn't have to make the drive over to our house. I also decided to take Trax in today so that I wouldn't have to deal with driving in the snow.  Unfortunately I left the house a few minutes later than I wanted to (and I had to go back for my cell phone), so I just barely missed the 7:15 train and had to wait around another 15 minutes in the snow for the next train.  Luckily I gave myself plenty of time this morning though and I still made it to Huntsman a half hour before I needed to be there.  It was pretty crowded on the train with the morning commuters and students taking the train this morning.

On the way home the valets at Huntsman drove me down to the Trax station and then it was a relatively quick ride to my stop.  As soon as I got off the train, DH called and asked where I was.  I told him that I had just gotten off of the train and was on my way home.  The snow was pretty deep in a couple of places and it took me a little longer than normal to make my way through some of it.  Then I turned into our neighborhood and had a hard time navigating around the snow piles.  I couldn't make it to the church parking lot that we usually cut through so I went around the other side of the church than I usually do and apparently I just missed DH and the girls.  I showed up at home and no one was there.  I called DH's cell phone and he said that they had gone out to meet me and apparently we just missed each other by going around opposite sides of the church building!  By the time I met up with them finally the girls were freezing!  Kay had refused to put on her boots and was just in her jacket and neither of them had gloves or hats on.  It took me a while to get them all dry and warmed up when we got back home!

Had my hair cut again today.  The top is gradually getting longer so I'm almost to the point where I will need to decide if I will keep it this length or let it grow out.  It is definitely easier to fix this hair style in the mornings.  The top is long enough now that I have tried curling it a few times with a straightener and curling iron.  It gives it a little more body up on top which I like.  I haven't quite mastered the technique yet but it should get easier the more I do it.

I have had many people come up to me, especially at church, commenting on how they like my hair this length.  I have told some people that I would have never dared to cut my hair this length before my cancer, but I am really liking it now.

Sorry it's been a while since I've posted!!  Things have been busy and I guess that is a good thing!  It means that my life is getting busy and back to normal and some days I just don't have time to sit down at the computer and update things!  (I also seem to like putting exclamation points on everything lately!)  I kept meaning to post on my one year anniversary of my surgery and then my one year anniversary of coming home from my surgery (Christmas Day), but I just couldn't find the time to do it.  It is pretty surreal to think about where I was a year ago.  In some ways it seems like a bad dream still.  Sometimes I sit and think, "Did I really go through all of that?"  - even though I definitely have the scars to prove it.  And days like today when I am receiving my next infusion of Avastin.  Another 7 a.m. appointment, but hopefully that gives me enough time to make it back home in time to take the kids to their swim lessons.  Yes, they are off-track again and I was crazy enough to sign them up for swim lessons again!  Even though the outside temperatures haven't been above freezing for the last couple of weeks!  I think it's good to keep them involved in something while they are off-track though so we don't sit around the house all day with them telling me how bored they are.  I also have Luke and Kitty in a soccer clinic that will be Tuesdays and Thursdays and started yesterday.  Swim lessons are Monday, Wednesday and Friday.  

I've been noticing that I have had more and more energy lately.  Our dishwasher broke just after Thanksgiving and we just barely ordered a new one last Saturday so we have been hand washing since then and I have actually had the energy to do it!  I have also been doing some deep cleaning that hasn't been done in a LONG time.  Now if I could just get myself to go to bed at a decent hour, I'd be all set!  (I rarely go to bed before 11 p.m. and I have to get up around 5:50 a.m. to make sure that M&M is up for school - and usually she is not...  Although I do usually go back to sleep for a little bit until the kids get me up or I need to drive Blondie to orchestra class at 8 a.m.)  I even had a crazy couple of nights where I was super in to some family history research I was doing and stayed up until around 2 a.m.  

My hair seems to be getting thicker.  I think I need to get in for a haircut again.  I finally pulled my brush out from hiding and used it for the first time last week.  Up until now I have just been using my fingers to style my hair in the mornings!  I have had numerous people come up to me and tell me that they really like this hairstyle on me.  I am enjoying it too - it is definitely easy to fix in the mornings.    I've also had several people ask me about my highlights - they are natural.  I haven't done anything to my hair color, but it looks like I have some blonde or frosted highlights in my hair (although some of it is starting to turn silver/gray too).

Another clear CT scan!  I feel like my Huntsman team is super relieved every time I have a clear scan - almost like they are expecting each time to have to give me bad news.  So I will keep praying and crossing my fingers that something I am doing is working and that the cancer won't come back.  We had a talk about the radiation from the CT scans and they keep saying that the radiologists agree that the amount that I am receiving is acceptable.  My doctor said that she has yet to see anyone present themselves with cancer that was caused by radiation - although how she would know that it was not radiation that caused it, I'm not sure...  She also said though that in the field of radiology they are constantly improving their methods and the technology so that the amount of radiation that the body is exposed to is significantly less than it was even a few years ago.  She also said that any studies that she could pull up on radiation exposure would most likely be out of date already.  I guess that part of it makes me feel better.  Also, since Huntsman specializes in cancer treatments, they use the absolute minimum amount of radiation needed for each scan.  Apparently other facilities that don't specialize in cancer may use more.  I asked if they would have me doing this many scans if I was not on the study and she said that we would probably do them twice a year because of the advanced stage of my cancer when I was diagnosed.  She also said that she had talked with my surgeon about her concerns for the number of scans.  My doctor is hesitant to have me quit the study that I am on because then I would lose the Avastin which appears to be doing what they want it to - keeping the cancer away.  They said that they have other patients in similar situations that they can't get the Avastin for because it is not approved by the FDA for ovarian cancer.

After my appointment was over I went to the infusion room for my Avastin infusion.  While I was there the counselor that works with my doctor's group came over and had a talk with me to see how I am doing.  We talked some about my Avastin treatments and my concerns over the study that I am on.  I think that my biggest concern is that we really don't know if the Avastin is really doing any good or if it is maybe causing some other problems that will present themselves later on in my life.  I am still young and want to be as healthy as I can for as long as I can be!

Pretty routine CT scan today - if I can even call it that.  I decided to do the alternative to the barium drink again - that stuff just does not agree with my digestive system.  It's something that they mix with sterile water and I haven't had the same problems that I have had with the barium.  It does have quite a nasty taste though so I'm glad that they allow you to mix some Crystal Light with it.  I have to get there a little earlier though so that I can get the drink there and start drinking it.  I decided to have them keep my port accessed since I will have an infusion tomorrow.

Well, yesterday I had a dentist appointment and things are not looking good with my mouth...  I have been very good about brushing and flossing since a few years ago when I had to have some extensive dental work done and I have been going to the dentist regularly - at least twice a year.  Well, yesterday the dentist found 5 cavities on my teeth and he said that I had more plaque build-up than he has ever seen on my teeth...  He kept making comments on how damaging to the mouth a lot of these cancer drugs are.  This is making me question even more if I want to stay on the Avastin or not...  I have to go back in to get the cavities drilled out and filled and the dentist is putting me on a prescription fluoride toothpaste.  He said that if that doesn't work at keeping the cavities at bay then we may have to switch to me sleeping with fluoride trays on my teeth at night.  He said that he has several other patients who have had dental problems while undergoing cancer treatments and a couple of them he has had to switch to the fluoride trays.  Definitely more to think about now...

I contacted my Huntsman group through email today asking about my upcoming CT scan next Tuesday.  I'm a little concerned with all of the scans that my body has been through over the last year and I know that my surgeon is concerned with the frequency of the abdominal CT scans right now.  The nurse called me back and we discussed it a little.  If I decide that I don't want to have the scans every three months then I will have to drop out of the study that I am in - which means no more IV infusions of the Avastin every 3 weeks (at least not paid for by the study).  Right now it is something that I am considering.  Every time I talk to any kind of doctor and mention how often my scans are, the response is universal:  That's a lot of radiation...  I was at the kids' pediatrician yesterday and she said the same thing, which is making me question the frequency as well.  My other question for my oncologist was that if I wasn't in this study, would she recommend the same frequency of scans.  Unfortunately the nurse did not give me a satisfactory answer.  It was something to the effect of she might, but it would all depend on the status of the cancer of the body - which for me is non-detectible - if there is any...  My gut feeling is that my doctor would not prescribe this many scans for me if I wasn't in the study - the nurse is just trying to give a non-committal answer.  A few visits ago when I was at my surgeon's office I asked her what the standard treatment would be if I was at her office alone and she said that it would maybe be scans once a year at the most.  Most likely they would only order a scan if there was some other indication that the cancer was coming back - such as abdominal pain or bloating or my CA-125 number rising.

I asked the nurse what the protocol is for scans for the study I am on.  She talked to the study coordinator and found out that it is abdominal scans every 3 months for the first two years (from the date of my last chemo session).  Then it is every 6 months for the 3 years following that and then it goes to yearly.  I am free to drop out of the study at any time.  I guess the question I need to think about and decide is if I think the benefits of the tests and the Avastin outweigh any possible side-effects that may come my way.

I had my Avastin infusion yesterday morning.  No lab work needed to be done so it was a relatively quick appointment.  The only hiccup was when the nurse came to deaccess my port.  The two of us were talking about books that our boys were reading and she pulled out the needle and after a few seconds she glanced down and noticed that there was blood pouring out of my port!  By the time we noticed there was a problem it was all over the front of my shirt.  She quickly put the bandaid on it and then applied pressure to my port.  After a minute or two it had stopped and the nurses put a big piece of gauze and a large bandaid over it.  The nurse who had deaccessed me said that she had never seen a port do that before, but another nurse said that it happens every once in a while so she didn't seem too concerned.  I wonder if the Avastin is causing my blood to take longer to coagulate.  I will have to mention it to my doctor the next time I come in.

Here is a picture of my shirt when I came home.  The nurse felt really bad and offered me some hydrogen peroxide to use there at Huntsman, but I didn't want to have to go home with a wet shirt so I declined.

This morning when I took the bandaid off I noticed that the skin covering my port was all yellow - I'm not sure if that is bruising from the pressure on it yesterday or if it is blood under the skin.  I will just have to keep an eye on it.

I'm reminded again today just have fragile life is...

On my drive to my infusion this morning (I left around 6:15 a.m.), I heard a news report on the radio that there had been an auto-pedestrian accident at an intersection very close to my house.  I didn't think much about it until my husband called around 8:00 a.m. to tell me that that section of road was blocked off (and this was more than an hour after I first heard about the accident).  I looked around on the internet to see if I could find any news reports on the accident and the only thing I found was what I already knew.  Then on my drive home I purposely drove by that section of road and it was still blocked off - there was a fire truck there and they were hosing down a section of the road.  When I got home I found that the news report had been updated and that it was a middle school gym teacher who was jogging to school and had been hit and killed!  I knew immediately that it was M&M's gym teacher.  He is in our church stake and I have frequently seen him jogging to or from the school for work.  He has been teaching at the school for 17 years.  We have seen him frequently outside of the school setting at church events and he has a son that was in the marching band with M&M.  Right after I had read that news report I got a message from M&M confirming that it was in fact her teacher.  This was her response after I asked a few questions:

"It was really sad, we passed it on our way to seminary. A couple of girls in our class were there when it happened, and when they came in they were shaking, so when our class found out it was pretty much dead silent."

I had just been commenting over the last month or two about how neat (and strange at the same time) it was to see so many people that we associate with on a non-church level at church functions.  I have seen M&M's gym teacher at numerous events both with the church and marching band in the last little while.  Even though I did not associate with him on a personal level, I am saddened to think about those people that he was close to and how it will affect them.  It really brings to home the fact that life is so very fragile and any of us can be taken home to our Heavenly Father at any time.  That fact hit me really hard last year when I was first diagnosed with cancer and even though my life has been prolonged for the moment, it is events like these that make me realize that I need to be grateful for every second that is given to me and spend my time and energy on those things and people that are most important to me.  

My thoughts and prayers are with this teacher's family & friends at this time.  I hope they will find peace and feel of Heavenly Father's love.

Had a pretty full day today.  I started out with my mom coming over to watch the kids for me so I could go to my appointment with my surgeon.  It was a pretty routine visit and everything looks fine as far as she can tell.  (Although my blood pressure always seems to be really high when I am in that office!)  I think she is a little concerned with how often I am having CT scans done, but it is because of the study that I am on...  I'm not sure if there is much I can do about that...

After my doctor's visit I went to get my second haircut.  The lady that has been cutting my hair said that my hair in the front just isn't growing as quickly as the hair in the back and on the sides.  That is something that I had noticed as well but I thought that maybe I was just imagining it!  She cut a little more off of the back and sides since it has grown so much since my last visit - already 6 weeks ago!  I was definitely feeling shaggy again!  I especially don't like the hair around my ears when it gets long!  My hairdresser thinks that I will probably need one or two more cuts before it is all an even length on the top.  Then I'll need to decide if I want to keep this length or not.

After my hair appointment I fed the girls lunch and then my dad came over to watch the girls while I went to the dermatologist for a follow-up appointment.  The dermatologist was really pleased with how my side was healing and said that she didn't think we needed to do anything more to it unless I start to feel it coming back.  She then asked if there was anything else that she could do for me and I asked her about a couple of red, raised spots that I have had on my skin for years.  She said that they could be easily removed and that she could do it right then if I wanted.  So she numbed up both spots and scraped them off and then bandaged them up.  One of the spots is on my chest and whenever I would wear a lower cut shirt MJ in particular would play with it whenever she was sitting in my lap.  I was given some vaseline to keep the spots from drying out and told to keep them covered.  Apparently dermatologists are finding that people are becoming sensitive to many of the topical creams out there so they just recommend that you put vaseline on any spots that need to heal instead of something like Neosporin or some of the other creams out there.  I thought that that was interesting.

After my dermatologist visit I got home and was able to sit down for just a few minutes before M&M came home and I needed to take her to get her hair cut - it has been a long while for her and I have always been the one to cut it.  I thought that she might like a more professional cut this time (plus she wanted some bangs) so I took her to the lady in the neighborhood that has been cutting mine - nice and convenient.

Then I came home and made dinner, rushed off to a pack meeting for our cub scout pack and then rushed off to the last hour of my Sounds of the Season rehearsal.  I am loving playing with this group again - I missed it last year - and they actually needed a bassoon this year so we are having M&M play with us as well.  It's been pretty fun playing with her and helping her out with the music.  She is doing really good for being as young as she is and having not even been playing bassoon for 2 years yet!

It was a super busy day today!!