My CA-125 number is at 14 again.

I had my annual breast MRI today. I had them use my port for the contrast that they administer for the scan. Afterwards the technician said that next time we should probably not use the port because it makes that part of the breast tissue hard to scan with the needle in it. So he said that unless I have poor veins I should probably have an I.V. put in my arm for the next scan. I had never heard that before so I guess I will consider it for next time. Maybe I'll talk to my doctor about it at my next appointment.

I got the results back later in the day and they did not find anything that appeared to be cancerous.

I had a little bit of an issue with my labs being drawn today. There is one study tube that is supposed to be drawn from my arm - not from my port - so that the heparin that they put into the port doesn't interfere with the results. The tube is to test for blood clotting and I guess the heparin can cause a problem sometimes. After my first round of tests were done that way, my study coordinator said that it would be fine to just draw that tube from my port as well - just have the nurses draw it last. So that is what I have been telling the nurses each time - and most of them did question me on it. Well, I guess my doctor has been telling the nurses to make sure that the labs that are supposed to be taken from the arm are taken from the arm and not from the port. So the nurse questioned me on it and I raised a bit of a stink about it and she finally decided - even after talking to the study coordinator and the nurse that works with my doctor - to just take the lab tube from my port after taking out some extra blood to help clear it. I talked with my doctor afterwards and said that this is how we have been doing it for over a year and a half now and if they are going to raise a stink about it and require it to be done out of my arm, what is the point in me keeping my port in? And why hasn't it caused problems with the results up to this point? Anyways, my doctor agreed to allow me to have it taken from my port so we will continue on as we have been doing for the last year and a half...

Other than that my appointment went fine.

My CA-125 number is at 14 this time around.

Today I met with my Huntsman doctor and I talked with her about my experience with my CT scan on Monday. She hadn't noticed the note that had been added but it was a good thing I mentioned it to her because they apparently flagged me as having an allergy to the I.V. contrast and wrote in the notes that I sneezed 3 times. It was also noted that I was feeling nauseous. My doctor said that the problem with doing that is that we don't really know that it was the contrast that made me sneeze - it could have been something completely unrelated - and if I am flagged as being allergic to it, it would mean that I can only get my scans done at the University of Utah where they can monitor me closely. I wouldn't be allowed to have my scans done anywhere else.

So my doctor called a couple of doctors/techs to consult with them and they decided to change my record so that I was not flagged as having an allergy to the contrast - but that they would do the scan normally the next time and just keep a close eye on me for any potential allergy symptoms. Also she changed the notes to read that I was feeling nauseous before the scan was done and before the I.V. contrast was given to me. We think that the nausea was unrelated to the scan itself.

After thinking about it later, I think that the reason I felt nauseous was because of my empty stomach - not because of the oral contrast. I will have to talk to my doctor about maybe not taking my medication the morning of my scan next time.

The nurse had no problem with my port today so I think I just need to be more aware of the time that transpires between my labs - if it is over 4 weeks again I may need to go in just to have it flushed at the 4 week mark. The Huntsman office there at the South Jordan clinic was pretty busy today so I had to wait a little but thankfully everything went fine with accessing my port.

I had somewhat of a weird experience with my CT scan though. I was having a hard time drinking the oral contrast today and towards the end I almost threw up a couple of times. I occasionally feel nauseous still off and on but I think it is a result of the medication I am on. I tend to have problems if I have gone a little while without eating anything - and I have to fast for 3 hours before the CT scans. When they called me back for the scan I had a hard time drinking the last little swallow before they had me lay down at the CT machine. They way they do the scan is they hook my port up to the I.V. dye and then they do a quick scan just to make sure they have everything lined up correctly. Then they inject the dye and then after about a minute they do two scans - one is for the abdominal scan and the other is of the chest/upper body. While they are doing the scans they have you take a deep breath and hold it while they are scanning. With my second scan I really felt like I needed to sneeze and had a hard time not moving/sneezing while the scan was going on. When they finished I sneezed 3 times in a row. When I told the tech that he said that he needed me to stay there on the table for a minute while he watched me. Apparently this can be a sign of an allergy which can happen over time. He asked if I had any tightness in my chest or if I was having any trouble breathing - which was a no to both. I did feel like I was going to throw up again - so I went over to the sink but managed to get it under control and didn't throw up. The tech then had me go and sit out in the hall for a few minutes and then he came and checked on me one more time before he let me leave. He said that people can develop an allergy that can lead to anaphylactic shock. He said that I appeared to be fine and he would make a note in my chart so that they can keep a watch on me for the next time. I then went and had my port de-accessed and went home and didn't have any other problems.

Met with my new surgeon today (since my original surgeon moved over the summer). She was nice. She was very impressed with how nicely my incision has healed. She said that she doesn't think she has ever seen one look so nice! I am actually surprised as well how much my scar has faded. I will try and take a picture that I can post on here when I remember. :)  The appointment went fine and everything looks good as far as they can tell.

My CA-125 number is at 12 this time around. :)

My appointment for this time around was scheduled for a Monday so that we could have it the same day that I met with my new surgeon. As it turns out though, whoever scheduled my appointment with the surgeon created an appointment at a bogus time that wasn't in the system and they had to call me and reschedule it for the following week...

Since it had been almost 5 weeks since my last appointment, the nurse had a little bit of trouble getting my port to work correctly... (I actually think that the nurse was a little too hesitant at sticking the needle into it and didn't get it in good enough. We will have to see though - that is just my personal observation from someone who has had her port accessed at least once every 4 weeks for the past 4 years...) Once she got the port working, it was much slower at drawing the blood out than I ever remember it taking. Hopefully it was just a one time thing - we will find out in 4 weeks when I have my next CT scan.

They also didn't have all of my normal labs listed to draw today so I made them call the nurse who works with my doctor to get them ordered. Again, since I have been doing this for a while now, I pretty much know the routine and try to make sure they get it right so I don't have to have my port re-accessed - which they've had to do before.

After all of that, everything went fine with my appointment. The study coordinator who I have been working with for a little while now apparently just recently took a new position up at Huntsman so there was a new coordinator there today. She seemed nice though - it will just take her a little while to get up to speed on everything that she has responsibility over now - she was the previous coordinator's assistant.

After my appointment I had an interview with someone who is conducting a study of young cancer patients and how they can best be helped and supported during the cancer treatments. It was interesting and made me think a lot about what I have gone through up to this point and maybe what would have helped me more while I was going through my initial diagnosis and early treatments.

I had my follow up appointment today. Everything looked fine on my scans and my CA-125 number came back at 13 which is fine. I asked if it helped to do my scans the day before so we can have the results in time for my appointment but the study coordinator said that they can't sign to have the drug released to me until they have physically seen me in the office - so getting the labs done sooner makes no difference. The nurse today asked me how long I have been coming into the office (she has only been there a little less than a year). I told her that it has been about 4 years and she said that she was wondering because I always have all of the routines down pat and know where everything is and everything just goes really smoothly for my appointments.

I had my CT scan this afternoon. Up until this point my scans have usually been on Mondays in the morning/early afternoon but because of the Labor Day holiday and the fact that MJ is in afternoon kindergarten, my scan was scheduled for Tuesday afternoon. Everything went fine for the scan but it upset my stomach some and I had to skip going to soccer practice because I needed to be close to the bathroom! I ended up having them draw my labs today so I could get my results back before my appointment tomorrow.

Just checked out my CA-125 results from yesterday. It is at 11 once again so good news there.

Another 4 week visit today. I met with another research fellow and she also had a high school student who was shadowing her. Apparently I am a model patient (and an easy one to work with) so they like to have all the newer/student doctors see me and read through my chart.

This visit was a little harder for me because my baby has started kindergarten and she needs to be driven to school right after lunchtime. Thankfully there is another little girl in her class from our neighborhood so MJ was able to get a ride with her and we will be carpooling from now on. It also worked out that my 12 year old hasn't started school yet so she was able to watch MJ until she was picked up for school. I asked the scheduler to give me afternoon appointments from here on out. Apparently the afternoon ones are easier to get because most people want a morning appointment so they can have their chemotherapy on the same day. I don't have to deal with that right now so I will be switching to afternoon appointments.

I found out a couple of days ago that my neighbor's cancer had spread more than they were hoping. She had her surgery and was diagnosed with stage 3C ovarian cancer - just one step better than my diagnosis. They were hoping that it hadn't spread that much... I went to the hospital today to visit with her. This whole experience has been bringing back a lot of memories and emotions from almost 4 years ago. I can't believe that it has been that long! They also found out that she does not have the BRCA-1 mutation - which surprised everyone. That will make her experience and treatment a little different than mine was. She will meet with her oncologist next week to decide on a chemo treatment schedule. (I will only give brief updates here about my neighbor because I don't want to share too much of what is her story.)

My CA-125 number this week was back down to 11.

My husband left for scout camp yesterday and M&M and Blondie left for YW camp this morning.

Today is Blondie's 12th birthday - my 3rd child! They are growing up too quickly!

Everything went fine with my appointment today. My scans looked good once again. Today is the surgery date for my neighbor - hoping for the best for her.

I had another scan today. Things were uneventful with the scan once again.

My CA-125 number was at 12 this week. I am not worried about it bouncing around like this though. I asked my doctor about it one time and she said that the bouncing around is fine - it is if the number started doubling each time that she would start to get concerned.

The other day my husband and I were talking about how we felt strongly for some reason to move to the house that we are in and we were wondering what that reason was. Then a day or two later we were at church and I was up on the stand because I was playing the organ for Sacrament Meeting when the bishop went up to the pulpit and announced that a neighbor of ours that had just had a baby had been diagnosed with ovarian cancer. My husband and I just looked at each other and I had an overwhelming feeling come over me that this is one of the reasons that we are in this house at this time - so that I can help be there to support our neighbor and her family. After church DH and I went to the hospital to visit with her and I had written her a letter beforehand about some of my experiences and feelings at the time. I also gave her my contact info and the link to this blog and told her to feel free to call me anytime for help or with questions.

Today at my appointment I talked with my doctor and nurse practitioner about my neighbor and they gave me some contact info so she can try to get in to the doctors at Huntsman. Other than that my appointment went fine. It is nice having the older kids out of school now so I don't have to find someone to watch MJ for me.

My CA-125 number this week is 11!

Had my 4 week appointment today. Everything looked fine with my CT scans. I am one of only a couple of patients still on the study that I am on. My doctor is hoping that pretty soon here they will let me space my scans further apart. Since my last appointment I have started trying to cut down more and more on the anti-nausea drug that I am taking. Right now I am down to taking a quarter of a pill before I take the veliparib.

Routine CT scan today. Nothing out of the normal to report.

The office called me yesterday and said that the machine for testing the CA-125 number was down for some maintenance so I would have to wait another day for the results from the test.  I checked online today and my number has risen slightly to 12 (from 10 the last couple of times).  Hopefully that is nothing to worry about yet.  Hopefully it will not continue to go up like happened a little over a year ago now...

Had my 4 week appt today again. I had to wait a long time for them to even call me back for my lab work today. After waiting for about 20 minutes I went and asked at the receptionist desk and they said that they were just really busy and would get me back as soon as they could.  I ended up finally getting called back for the labs and by the time I saw the doctor it was about an hour past my appointment time.  (Usually they are pretty close to schedule and I am usually called back for my labs within 5 minutes of checking in at the front desk.)

I met with another resident fellow today. I'm never sure what to say to them because I really don't have any symptoms to complain about and not much to really discuss with them.  After that the doctor came in and I let her know that my surgeon is moving.  We think it would just be easier to transfer my care up to Huntsman so we are not having to send results back and forth between the two offices.

I also asked the doctor if I could ever be considered in remission. I have people ask me all the time and I am never really sure what to say to them.  She said that yes I can tell people that I am in remission - since I have no evidence of disease and my CA-125 number is within normal levels.  She said that I am just receiving maintenance therapy for the cancer - we are not actively treating any cancer.  So "YEA" I am in remission!!

I had a mammogram today.  It went pretty quickly and then the technician said that the doctor was going to look at the scans while I was waiting in case there was something of concern on the scan that they wanted to take another look at.  So after waiting for a few minutes back in the waiting room, the technician came out and said that things looked good and that I could go home.  That was kind of nice - better than the last time when I had to come back a couple of days later to do some rescans.

I had my 6 month appt with my surgeon today.  She said that she is moving at the end of June so this will probably be my last time seeing her.  Her husband got a new job in Michigan so she is transferring to a practice out of the University of Toledo.  She said that I can either transfer my care to one of her partners in the office or just transfer to one of the doctors at Huntsman.  Other than that everything went fine for my appt.

My CA-125 number is still at 10 this time around.

Went in for my 4 week appt today.  I asked the doctor about the labs that they wanted to draw on Monday and they were a little confused by it too.  Apparently I could have had them draw my labs on Monday but they have to do the study labs right before my appointment so it doesn't really matter either way.  I just couldn't remember if I was allowed to take my study drug on the morning of the regular labs so I didn't want to risk it on Monday.  I am not supposed to take the study drug before the labs for the study are drawn, but apparently it is fine for the other labs.

We also discussed my bone scan briefly and they said that my bone density levels are pretty close to what they were with my last scan and that my vitamin D levels look good so just keep taking the vitamin D supplements.

CT scan today. Things went fine for it.  When I went to get my port accessed, the nurse said that I had lab work for her to draw and I was a little confused because we usually just do it right before my appointment at Huntsman since they have to draw special tubes for the study anyway.  So I told the nurse not to draw them. Other than that, everything went as usual.

The bone density machine finally worked today! The scan went pretty quickly and then I was out of there and back home again.

I had my bone density scan scheduled for this morning.  When I showed up the technician came out and said that she hadn't used the scanner since that last time when it had broken down and when she showed up this morning there was a note on her desk saying that everything was working.  Well, she tried to turn the machine on and it wouldn't even turn on this morning.  So we had to reschedule again! And they gave me another $6 gift card to the eatery again.  Luckily this time I hadn't traveled very far to get there.  So I will cross my fingers that everything will work next week...

I also go my CA-125 test results back and it is at 10 again.

I just had my routine 4 week visit today.  Everything looks fine with my labs.  Since my kids are off-track from school, I dropped them off at my parents' house on my way into the clinic.

I did notice that my last CT scan was not paid for by the study like it was supposed to be.  I let the study coordinator know and she is looking into it.

I had an appointment for a bone density scan right before noon today.  I took MJ over to my parents' house and helped them pack up their kitchen for their cabinets to be redone and then I drove over for my appointment.  After sitting around for a little while I overheard someone talking to some ladies and it sounded like there was some machine broken and they were having to reschedule appointments.  I asked the technician about it and she said that it was the dexascan machine - which is what I was there for.  Apparently it quit working during someone's scan and after rebooting the machine it still wasn't working so they were having to reschedule all of the appointments for that day.  They usually only have appointments one day a week but the following week they were not going to be having any appointments.  I now have to wait until the day after my next doctor's appointment to get my bone density scan done.  They did give me a $6 gift card to use at one of their eateries though...  I think I will save it until I go downtown next time since it will be over lunch time.

My CA-125 number went up one digit to 10 but nothing to cause alarm.  The nurse called me to let me know that my vitamin D level is slightly below where they would like to see it so they want me to take more vitamin D supplements and calcium as well.

I took MJ over to my parents' house while I went in to the Huntsman clinic for my dr's appt.  Everything was clear with my CT scan and lab work.  I asked the doctor if she thinks it is worth it for me to stay on the veliparib drug and she said she definitely thinks it is helping to keep the cancer away - but I can take myself off of the study at any time if I want to.  They are hoping that the drug manufacturers at some point will let us scale back on the CT scans and allow us to space that out more. I asked about the parp inhibitor drug that was just approved by the FDA for cancer treatments and the doctor said that I would not qualify for it (or my insurance company would reject the treatments) because they require that you have to have tried the standard chemotherapy options 3 times before they will pay for the drug.  Also she said that the other drug has to be taken something like 8 times a day.  She thinks that the drug that I am on is a much better version of parp inhibitor.

They tested my vitamin B12 level and it was actually slightly above the normal range - so that is not what is causing my red blood cells to be abnormally shaped.  They think it is just the drug that I am on - although they have not seen that side effect in everyone that is on it.

Another routine CT scan today.  My mom came over to watch MJ for me.