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.