Today I met with my surgeon for my 4-month follow-up appointment.  She asked how the Avastin infusions were going and I asked what her thoughts are on the drug.  She said that in studies that she has seen just recently, patients that stay on the Avastin seem to do better and keep the cancer away longer than those not on it.  She said that her feelings are that with how advanced my cancer was that she would probably stay on the Avastin if she were in my shoes.  I also asked about my CA-125 count going up and she said that that is within the scope of the accuracy of the test.  She said that if the number was doubling each time then that would raise red flags to her, but with it being just a couple of points here and there she says that isn't much to worry about.  Other than that everything appears to be fine - although my blood pressure is always high there when they measure it...

I had a little bit of a problem with the office and this appointment which I scheduled 4 months ago.  Apparently they doubled booked the time slot that I was in so they tried calling a week ago to have me move it to Wednesday instead but I said I couldn't because I had family in town.  Well a couple of days after that they called to confirm my appointment and apparently moved my appointment back a half hour without telling me.  I said that I couldn't meet a half hour later because I had a appointment for one of my kids at Primary Children's Medical Center right after my appointment so if they were going to keep me at 9:30 then I would have to reschedule for another day.  Well, I guess they got something worked out because they called a day or two later to confirm my appointment for 9:00.  Talk about frustrating!!

So my CA-125 number has crept up to 19.  At my lowest it was 15 - back in February.  They are not concerned yet with that number, but if it continues to go up they may order some more tests.  I am still well in the normal range which is 35 or lower.

I didn't get my normal reminder call yesterday about my appointment this afternoon so I called in to make sure that I had the date and time right.  When I got in to the office, I found out that the regular nurse that works with my doctor has been out for the last 2 weeks because she had her tonsils removed.

It was kind of weird today at the office because I sat around in the waiting room for a while before they finally called me back.  Then when the nurse called me back she took my vital signs and then took me straight to an examining room without having my labs drawn first.  I asked the nurse about it and she said that they would do the labs afterwards.  That made me a little nervous while waiting for the doctor to come in, wondering if maybe they had some bad news about my CT scan and so they weren't going to do the standard labs today.  When the nurse practitioner came in though, the first thing that she said was that my CT scans looked good!!  Yea!!  The nurse practitioner talked to me and then did my exam.  We talked about some lower back pain that I have been having and we talked about getting a bone density test done the next time I come in.  Then the doctor came in to see me and she said that she is always so happy to get the scan results back and seeing them clear!  She said that she still remembers the phone call from my surgeon back in 2011 telling her that she had a very young patient with stage 4 cancer and would they be able to see me at Huntsman.  The doctor said that it gave her chills thinking about that and that she still very clearly remembers that phone call.  In some ways it seems like a long time ago and in other ways it seems like just yesterday...

After I finished up with the doctor, they took me over to get my labs drawn.  Then I went and grabbed a quick bite for lunch before heading to the infusion room.  I went outside to eat my lunch because it was such a beautiful day but afterwards I had a hard time finding my way back into the building where I needed to be.  Somehow I ended up in the hospital side of the building on the floor I needed to be on and then found a door that said it was to the waiting area so I went out the door and was right at the infusion check-in desk.  When I went up to the desk the lady behind it asked, "Where did you come from?"  It was kind of funny.

My infusion itself went pretty smoothly.  I will most likely hear my CA-125 results tomorrow.

I finally got my hair cut this morning!!  I have been wanting to get it cut for the last 2 months but just hadn't gotten around to it.  It has been getting longer and longer and harder and harder for me to get fixed and looking good in the mornings.  There have been several days where I just didn't have the time to do anything with it so I threw the top part of it into a very short ponytail and then went about my day.  It feels much better having it cut!  I was feeling very shaggy!  I think I will keep it short for the summer and then decide what I want to do with it (although right now I am leaning towards short).  I will try and post some pictures when I get a minute.

They have rescheduled all of my upcoming appointments so I won't be going in tomorrow to visit the doctor.  They have bumped it back a week - which unfortunately means that I will have to go in on my husband's birthday...

Went to the satellite clinic for another CT scan today and thankfully it went much more smoothly than the last time.  I had to go to their infusion clinic to get my port accessed and deaccessed, but it was just right around the corner from the imaging lab.  I was supposed to have labs drawn as well but when I was looking at my calendar last night I realized that I am going to be out of town right around the time of one of my avastin infusions so I have been trying to get ahold of my doctor's office to see if we need to reschedule my appointment this Wednesday and shuffle all of the appointments around.  I think I can have up to 4 weeks in-between my infusions so maybe we can push them all back a week or so so that I won't need one while we are out of town!

Pretty routine infusion today.  Once again I am asking myself if I should continue these treatments or not.  Unfortunately there are no guarantees either way...  I am supposed to have a CT scan before my next appointment in 3 weeks and I feel like I was just having my last one...

Got a call from one of the nurses at Huntsman to let me know my CA-125 number.  It is 17 once again which is good.

I am now more than a year out from my first CT scan after my last round of carboplatin/paclitaxol chemotherapy - so halfway to remission (which is two years from that CT scan).  It is humbling to see where I am today versus where I was a year ago.  I have been very blessed up to this point and am thankful everyday for every extra day that I have been given.  I feel great and have been fitting better into my clothes and my hair is growing nice and long!  At the same time I get a little anxious whenever I have another dr's appt or scan, especially when I get a phone call from the office that I am not expecting!  My constant hope and prayer is that I have beaten this cancer and that it will not come back!  I want to be here for my children and my husband, to help them out and to watch them learn and grow.  I enjoy being involved in their lives and helping to teach them.

It has been hard watching another family member go through some similar and yet different cancer experiences.  I remember very vividly the feeling of the first diagnosis and the fear associated with it.  I understand the feelings of doubt and loneliness, the feeling of hopelessness and total lack of control.  When I found out my diagnosis of Stage 4 ovarian cancer I started looking at everything as if it were going to be my last:  my last Christmas?, my last Halloween?, my last birthday?, the last soccer game for my kids that I go to?  It was so hard and is still hard to think about.

The chemo treatments were very hard, although I think that being young definitely helped me.  At the same time, being young and with a young family was a blessing in some ways and harder in other ways.  It has definitely given me something to live for though and a reason to get up every morning and keep going.  Now things are pretty much back to normal - although I still have routine doctor's visits and my maintenance chemo that I have every three weeks.  Other than my scars and the port I still have in my body, the kids I don't even think that I have cancer anymore.

A couple of months ago Luke came home from school and told me about a writing assignment that they had to do at school where they had to write about a wish that they had.  Luke said that he wrote that he wished that there was no such thing as cancer or that there was a cure for it or a way to prevent it.  I thought that that was very touching.  It's sad that these kids at such a young age have had to experirence first hand what cancer can do.

Another fairly routine doctor's visit at Huntsman.  It seemed more busy than usual today at the office and it took them a while to get to me and get my port accessed and labs drawn.  Then there was a new nurse in the port access room who accessed my port.  She didn't do a very good job, but I guess she is still learning.  There was one of the regular nurses helping her out and she had to fix the needle in my port because the first nurse went in at a little bit of an angle so it didn't engage the port...  It was kind of annoying and it is a little more uncomfortable for me.  My skin also turned bright red again but I think that was due do all of the manipulating that the nurses had to do.  By the time I made it to the infusion room it was back to normal color.  The doctor printed out my scan results for me and said that everything looked normal in the scans.  So we are still keeping our fingers crossed with that.

I was a little early for my infusion so I stopped upstairs and grabbed some lunch first.  Now I am just waiting for the Avastin to show up.  My blood pressure continues to be normal and I have lost several pounds from my last visit.  My clothes have been fitting much better lately and I am fitting into things that I haven't worn in quite a while.  I also have some of my regular clothes that are getting baggy looking on me - especially some of my pants.

My hair is getting super long.  I think it has grown quite a bit over the last couple of weeks.  I had many people in the clinic commenting on my hair today.  I am at the stage now where I need to decide what I want to do with it.  If I am going to keep it short then I think I want it a little shorter than it is right now.  The top is getting harder and harder to get looking the way I want and the sides are getting really shaggy.  My normal hairdresser that lives in my neighborhood just had a baby a month and a half ago so I haven't wanted to bug her yet about a haircut!

The Avastin just showed up - I think this is the quickest that it has ever been.

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!