I had DH come with me to my appointment today.  It is a little bit of mixed results from my labs and scan yesterday.  The scan looks good other than a small lymph node near my groin area on my left side that is a little bigger than the last scan.  They will keep an eye on that but are not too concerned about it yet.  The bad news is that my CA-125 number has jumped up again - now it is at 51.  They are concerned about that but not sure what it means yet - although DH got them to say that there has been research that shows that the CA-125 number can increase and it may take several months before anything shows up on a scan.  Apparently they reviewed the requirements for the study though and I will not be pulled from it until my number goes above double the normal high of 35.  So bottom line is they believe that my cancer may be slowly trying to come bak but they do not know where or how yet so there is still nothing to do other than wait until something more definitive shows up.  They do feel that the Avastin may be slowing down whatever is happening though so they would like to see me stay on it.  So I came to this appointment expecting to be kicked from the study only to find out that they would like me to still stay on it.

So after meeting with my doctor DH and I headed up to get some lunch before heading to the infusion room.  My blood pressure was in the normal range and we actually got the Avastin relatively quickly.

Had my CT scan and labs drawn today at the South Jordan clinic.  It went relatively smoothly.  It's unfortunate that I consider them routine now...  Tomorrow I have an appointment with my Huntsman doctor and will get the results.  Here's hoping for the best!

My blood pressure was fine again today.  It took almost 2 hours to finally get the Avastin (which was quite annoying), but once it came everything went smoothly.  This may be my last Avastin infusion.

Just got a call from the nurse at Huntsman saying that my breast MRI results came back normal.  Definitely some good news in the midst of everything else.

My dad came to watch MJ while I went in for my breast MRI.  The nurse that accessed my port for me is the same one that I have talked to about my father-in-law in the past so she asked me how he was doing.  I said that he had passed away and she was sorry to hear that.  Although we both agreed that it was probably a blessing for him that he went quickly and didn't have to suffer for an extended length of time...

My MRI went fine and thankfully I didn't have to cough at all!  (I still have a little bit of a cough.)  One slightly annoying thing about each of my scans and MRIs is that I alway seem to have to fill out the same paperwork and answer the same questions everytime.  It is slightly annoying when the answers have not changed from one scan to the next and they should have access to all of my medical records anyways!  So no, I am not pregnant and there is no chance that I will be.  My family history of breast cancer and ovarian cancer has not changed.  I do not have diabetes and I am not on any type of dialysis.  I have never worked as a metal worker or had any type of job working with metal.  The only metal in my body is my power port and a dental implant.  (Although I can never seem to find the right check box to mark for the power port.  I actually had to look up some of the questions on the internet because I didn't even know what they were asking!)  And even though they had called me two weeks before to ask me questions before the MRI that I cancelled, they had to call two weeks later and ask the exact same questions!

We got back in town early this morning from Washington.  We had a really nice funeral for Dad N.  All four of his kids spoke, his daughter sang a beautiful song and all of the grandkids sang, "I Am a Child of God."  My husband helped to write a nice obituary for him:  Dad N's obituary
It all still seems surreal that he is gone.  I imagine we will be feeling that way for quite some time.

Today I had an appointment with my surgeon.  She was wondering if maybe my recent sickness threw off my CA-125 number.  She seemed a little more concerned about the recent jump but also agreed that there is really nothing to do unless we actually have more definitive proof that cancer has returned and that we can see it somewhere.  Other than that things were fine with the appointment.  I will go back again in 4 months.

My husband flew up to Washington this evening to be with his mom and siblings.  There is a lot of planning they need to do and loose ends to tie.

I was supposed to have my annual breast MRI today but called in and rescheduled it for two weeks later.  I have a really bad cold/cough right now and can just picture myself in the tube trying to lay still for my MRI and needing to cough really badly...

Yesterday we heard from my mother-in-law that Dad N is not doing well at all.  Hospice care came in Sunday and said that they gave him about 5 days.  My husband was going to fly up this evening to be there with them but then we got a call just after lunch that he had passed away.  We are still in shock. Dad N was 66 years old.  We saw him just over a week ago and now he is gone.  He lasted less than a week after his doctor predicted 4-6 weeks.

Got word from the nurse on my CA-125 number today.  Unfortunately it has gone up again and I am above normal now.  My number was 41 - with 35 and lower being normal.  The doctors aren't too concerned at this point and are fine waiting until my CT scan in December to see if there are any other indications of the cancer returning.  The nurse said that absent of any other symptoms or cancer indications in my CT scan they still will not do anything.  The nurse also commented that she has never liked having to call people with their CA-125 results because it is not always reliable and at this point they are not going to do anything anyways.  If they have no other signs that the cancer has returned, then they have no way to know how to fight what they can't see.  Unfortunately I have never really had many signs to begin with so we will just have to wait and see with my CT scan.  If my CA-125 is still elevated when I have my labs taken again in 6 weeks then I will be pulled from the study.  So I may just have one more Avastin infusion.  I told my husband that maybe this is God's way of telling me that I need to go off of the study and off of the Avastin!!

My husband and I have had discussions before about my cancer and whether or not I have any impressions about whether it will come back or not.  And while I have not really felt one way or another about how long I might live, I told him quite frankly once that while I have met many cancer survivors who try and give me hope on my future, I have never met anyone with stage 4 cancer who has survived...  That doesn't mean that I won't beat it, but it is a sobering thought.

My appointment and infusion went fine today.  Things have been a little crazy with our family schedule though!  We just got back on Monday night from Washington.  My husband's sister got married!  The wedding was very nice and it was good to see family that we hadn't seen in a while.  And it was good to meet our new brother-in-law finally!  The hard part about the wedding was seeing my father-in-law.  He is not doing well.  He has not wanted his health info shared until now so I haven't mentioned it in my blog other than to say that a close family member was going through some struggles with cancer.  My father-in-law was diagnosed with renal cell carcinoma about a year ago.  Right before Thanksgiving he had one of his kidneys removed, but it had already spread to his spine and lungs.  After that they have been trying different chemo drugs on him to see if they can stop or at least slow the growth of the cancer.  It has definitely been a roller coaster seeing how different drugs have affected him, both physically and mentally.  This weekend he was in quite a bit of pain and was definitely having a hard time getting around.  He has lost a lot of weight and doesn't have much appetite.  He slept most of the time we were there and quite frankly the events with the wedding really wore him out.  He was able to walk his daughter down the aisle though and it was a sweet experience for all who participated.  After we left town though they went in for some lab work and doctors appointments and found out that the doctor believes that his liver and remaining kidney are both failing.  There are some things they can try to maybe prolong his life, but at this point they are giving him 4-6 weeks to live.

Sorry, I've been falling a little behind lately in updating this blog!  There has been a lot going on so I will try and update as best as I can.

My blood pressure was normal for my avastin infusion today, but there was some confusion about the amount of the medication that they were supposed to give me or something like that.  I had to wait super long because apparently there was something different this time when the pharmacy went to fill the Avastin prescription and they had to do some double checking with the study coordinators to make sure they gave me the correct dosage.  Pretty annoying since it has been the same for almost 2 years now and my weight has stayed pretty constant through all of that time.  After they finally got it sorted out things went smoothly.

My blood pressure was a little elevated again today at my doctor's appt, but I attribute that to the fact that I was super nervous about the results of my CT scan.  My doctor came in and sat next to me and was trying to make small talk and the whole time I just wanted to know what my results were!  The nurse was at the computer and I saw that she was bringing up the CT scan images and then she pulled it over to where the doctor and I were sitting.  The doctor then said that my CA-125 number had gone up 2 points again, but my CT scans looked really good and so she was really glad that we had the scan done this week.  She is not sure why the CA-125 number is going up (it is at 27 now) but it can unfortunately be caused by a lot of things.

I am now 1 1/2 years out from my last chemo cycle!  I can't believe it has been almost 2 years since I was diagnosed with cancer!  The trial study coordinator came and talked to e and said that I will just have two more CT scans at the 3 month interval and then I will get bumped to a 6 month schedule!

The doctor said that my blood pressure was a little bit elevated but it was low enough already that they could still treat me today.  After I was through with the doctor I went and got some lunch and then checked in at the infusion desk.  When they called me back to the infusion room they came to take my blood pressure and the nurse said to not record it if the lower number is higher than 90.  Well, it was right at 90 and I said that the doctor had already okayed my blood pressure and she said that the pharmacist had called and they want to see my blood pressure lower before they okayed the avastin...  Not too happy about that...  After two more tries the lower number was still at 90 but apparently the pharmacist okayed it and so they gave me the avastin without anymore problems...  I seriously think that they are making me super nervous each time they come to take it!

CT scan and labs today.  My appointment was made for 6 p.m. so it was a bit of a crazy.  It made it nice in the fact that I didn't have to find someone to watch my younger kids, but I think I prefer having it done earlier in the day so I can be home for dinner time!  I showed up at Huntsman 1 1/2 hours early to pick up the gastro contrast drink.  Then I went down to the clinic to get my port accessed and have my labs drawn.  Afterwards I went back to the radiology clinic and waited.  They tried taking me back over 30 minutes early but I hadn't had enough of the contrast drink yet so they sent me back to the waiting room.  Finally just before 6:00 the radiologist came out himself to get me and hooked me up to the machine for the scans.  It went very quickly but by the time I was done my regular clinic was closed so I had to go to a different clinic to be deaccessed.  When I got to the other lab I had to sit and wait 15 minutes or so before someone finally came to take care of me.  I'm a little anxious for what the results will be from this scan since my CA-125 number has been slowly going back up...

So I came home from my infusion the other day with a little bit of a negative attitude towards the medical community in general...  I know that they ultimately think they have my best interests in mind, but I don't like being treated like I have no clue what is going on.  I know that one of the common side effects of the Avastin that I am on is high blood pressure, but I was not convinced when I came home that I am suffering from that.  So I came home with the medication for high blood pressure on Wednesday with the intent to monitor my blood pressure at home and if it really is consistently high, then I would take the medication that I was given.  If not, then I would talk to my doctor about not taking it.

I was able to pick up a blood pressure cuff from my mom and have been trying to take it daily - which is a hard thing for me with a very active family of 6 young kids!  The times when I have remembered it and actually tried to sit down for a period of time to take my blood pressure, it has been normal...  

So I got a call from the pharmacy the week after my infusion and they asked how I was tolerating the medication - to which I gave maybe a misleading answer.  I said that I was doing fine and they asked if I had been monitoring my blood pressure to which I replied that I had been.  When I responded that it had been normal, the pharmacist asked for some of my readings which I read to him.  He quite frankly sounded surprised that my blood pressure was normal and responded that it sounded like the prescription was doing what they had hoped and that they would not need to up to dosage.  So, now I guess I need to talk to my doctor and the study coordinator and admit to them that I have not been taking the medication...

I'm a little bit irritated about my infusion today...  They tried to take my blood pressure right when I got there to the infusion room and it was high.  So they came back a few minutes later to try it again and it was still high.  Then another nurse came and tried it and it was the same.  Well, this sent up warning flags all through my team of care givers and finally the study coordinator came over and said that my oncologist had okayed them to give me my infusion anyways but they were then going to give me a prescription for a high blood pressure medication.

Frequently throughout my adult life I have suffered from white coat syndrome, and particularly when maybe things might not be going quite right at an appointment or I am anxious about anything, my blood pressure will be high.  I kept telling the nurses about my white coat syndrome and that with my first pregnancy, the midwife office that I was attending actually wrote in my chart to make sure and take my blood pressure by hand because it was always much higher with the automatic machines.  But of course no one would take it by hand or listen to me.  So after they okayed my infusion drug, a pharmacist from the pharmacy here and an assistant came to talk to me about the drug that my doctor had prescribed and the possible side effects of it.  They said that I was going to be started out on a very low dose to see how I tolerate it and then if needed they will up the dosage.  Apparently the most common side effect is the blood pooling up in the ends of the fingers and causing some swelling.  They also asked if I had a blood pressure cuff at home so that I could monitor my blood pressure every day.  I mentioned that my mom had one that I would see about borrowing.  They said that they would call me in about a week to see how my blood pressure was doing and how I was tolerating the drug.

So, after the issue with my blood pressure, they finally gave me the Avastin and then I went down to the pharmacy to pick up my prescription.  Thanks to my mom for having to spend extra time at my house - I was probably gone an extra hour and a half longer than I typically am gone on my infusion only days.

Got a call from Huntsman today.  My CA-125 number has gone up again.  This time it is at 25 (from 19 last time).  I am not happy about the increase but they say not to worry about it too much yet.  They said that the CA-125 test is not as good of a test indicator as the CT scan is so when I have that done next time they should be able to tell more definitively if the cancer is coming back.

We had to do some rearranging of appointments and bump my doctor's appt and infusion back a week because we went out of town as a family and then I went to YW camp for a few days.  (I don't mind though!)

Today's appointment was pretty uneventful.  It took them a few minutes to find the results from my bone density scan, but once they found that it was fine.  I am right on the edge of where they would like me to be as far as my bone density goes.  They say that some exercising can help with that though so I will need to try and work that in to my schedule!  My calcium levels were good though so the calcium supplement I am taking is a good one.

My infusion was pretty routine today.  Afterwards I had a bone density scan scheduled at the U of U hospital.  It was in a really old section of the hospital and they gave me a piece of paper with directions on how to find it.  It was quite the labyrinth to get there.  Once I found the room I wasn't sure what to do.  There was no one in the entrance to the room and there were several old office type chairs in the hallway with a lady sitting on one of them knitting.  So I walked in and there was someone there meeting with some people for their appointment.  She told me to just wait in the hallway.  (It would have been nice if there had been a sign or something on the door.)  I was quite early for my appointment because when they set it up for me they wanted to make sure that I had plenty of time to get my infusion and then make it over.  Luckily they were able to take me about an hour early so I didn't have to waste too much time there.  The scan was pretty quick and easy.  Since I am post menopausal now this may be something that I will have to have done periodically.

I just read the other day that Pierce Brosnan's step-daughter Charlotte just passed away from a 3-year battle with ovarian cancer - I'm not sure if she was 41 or 42 - it depends what source you read.  Apparently her mother and grandmother also died of ovarian at young ages - her mother was 43 and married to Pierce Brosnan at the time.  The family has the BRCA-1 mutation that I also have.  I wish that I could find out more about her battle with the cancer, but so far I haven't been able to find anything other than statements to the fact that she has fought it for 3 years.  That's one reason why I am keeping this blog in the hopes that it might help someone else down the road that is going through a similar battle with ovarian cancer.  It is sad to hear news like this though and I hope that their family is able to find peace.  She leaves behind a husband and two young children.

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!

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).