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...