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.