Had a message from the study coordinator today to call her back.  When I did she asked, "What do you think your CA-125 number is?"  I said that I didn't know, not really wanting to play a guessing game (wanting to guess lower but thinking that might be too optimistic - or maybe it was right at 70 again).  She said that my number came back at 62!  So lower than my last lab work 6 weeks ago - which was 70!  (This is the first time that my CA-125 number has gone down after it started making its upward climb & I think it completly surprised my group at Huntsman.)  Then she went on to say that my scans came back clear as well!

So even though this is really good news, it kind of puts us in an awkward spot as far as the new study goes.  The study is specifically for BRCA-1 patients who have an active tumor to follow or have a CA-125 number at 70 or higher for two lab tests.  So as of today I would not be accepted into the study.  My doctor recommends that we cancel my appointment for tomorrow and they would like me to come into the clinic in another couple of weeks to have the labs drawn again and see what the CA-125 number is.  If the number is 70 or higher then they can start me on the study drug then.  If it is still below 70 then we will probably enter a watch and wait phase until my number goes back up again or something shows up in a scan.  So I agreed to that and we canceled the appointment for tomorrow - which means I went from two doctor's appointments and an Avastin infusion (which was initially set up 6 weeks ago) - to nothing tomorrow!  (My surgeon's office called last week to say that I would not be able to meet with the surgeon on March 19 but could meet with the nurse practitioner instead.  I said that I would like to meet with the surgeon so we rescheduled for April 2.)  I will go up to Huntsman to have the labs redrawn after my surgeon's appointment on April 2nd.  Now if I could just get rid of this cold!

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.

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!

Another clear CT scan!  I feel like my Huntsman team is super relieved every time I have a clear scan - almost like they are expecting each time to have to give me bad news.  So I will keep praying and crossing my fingers that something I am doing is working and that the cancer won't come back.  We had a talk about the radiation from the CT scans and they keep saying that the radiologists agree that the amount that I am receiving is acceptable.  My doctor said that she has yet to see anyone present themselves with cancer that was caused by radiation - although how she would know that it was not radiation that caused it, I'm not sure...  She also said though that in the field of radiology they are constantly improving their methods and the technology so that the amount of radiation that the body is exposed to is significantly less than it was even a few years ago.  She also said that any studies that she could pull up on radiation exposure would most likely be out of date already.  I guess that part of it makes me feel better.  Also, since Huntsman specializes in cancer treatments, they use the absolute minimum amount of radiation needed for each scan.  Apparently other facilities that don't specialize in cancer may use more.  I asked if they would have me doing this many scans if I was not on the study and she said that we would probably do them twice a year because of the advanced stage of my cancer when I was diagnosed.  She also said that she had talked with my surgeon about her concerns for the number of scans.  My doctor is hesitant to have me quit the study that I am on because then I would lose the Avastin which appears to be doing what they want it to - keeping the cancer away.  They said that they have other patients in similar situations that they can't get the Avastin for because it is not approved by the FDA for ovarian cancer.

After my appointment was over I went to the infusion room for my Avastin infusion.  While I was there the counselor that works with my doctor's group came over and had a talk with me to see how I am doing.  We talked some about my Avastin treatments and my concerns over the study that I am on.  I think that my biggest concern is that we really don't know if the Avastin is really doing any good or if it is maybe causing some other problems that will present themselves later on in my life.  I am still young and want to be as healthy as I can for as long as I can be!

Got my results from the breast MRI - no sign of anything abnormal.  Those are the results that I like to hear!

Got a clear report for my CT scan today.  That's 3 in a row (actually 4 if you count the one immediately following my surgery).  I guess you can say that I have been 6 months cancer free now.  First I need to make it to the 2 year mark to be in remission and then the 5 year mark to be considered really cancer-free.  Keeping our fingers crossed and happy thoughts!!

DH and I decided to try taking the UTA Trax to my appointment today.  We figured that it would take about an hour train ride from the stop near our house and then 15-20 minutes to get from the last stop to the Huntsman center.  My mom got to our house a little more than an hour and a half before my appointment.  DH and I walked to the station and made it with about a minute or two to spare.  It took a little over 50 minutes to get to the last stop and then we crossed the street to the bus stop in front of Primary Children's Medical Center.  While I was trying to figure out if that was the right place to catch the campus bus to the Huntsman center, the shuttle bus that we needed pulled up and it was just a short drive up to our stop.  We got to the clinic about 30 minutes before my appointment - pretty good timing!!

Once we got to the clinic I checked in and figured that we would have to wait for a little bit before they took us back, but we had just barely sat down in the waiting room when they called my name.  Once we were put into one of the examination rooms, it wasn't too long before one of the doctors came in and looked me over and then my main doctor came in.  They asked if I wanted a flu shot and I said that I would think about it and let them know next time I come in.  I showed them the rash on my arm and they don't think that it is related to my treatments but to keep an eye on it - and try some hydrocortisone cream on it.  I have been using a Benadryl cream on it but I'm not sure if it has hydrocortisone in it or not.  I will have to check when I get home.  I also mentioned my bleeding gums and they said to just keep and eye on that as well.  Maybe I need to make an appointment with my dentist (althought that is not one of my more favorite places to visit).  One thing that they didn't give me was my CA-125 number.  I may have to call into the office tomorrow to find that out.

We got finished with the doctor pretty quickly and then went up to the cafe to get some lunch before we headed to the infusion room.  Now I am just waiting for the Avastin from the pharmacy so they can get it started.

Got a call from one of the nurses at the Huntsman clinic today.  I was a little nervous when she said that my doctor had asked her to call me.  Then she went on to say that she was calling with my CA-125 blood test results.  Then I thought, "Uh-oh.  It must be bad news if they are calling me with the results."  Well she went on to say that my number had been 22 back in June with my last test and that yesterday the number was down to 20!  (Which is totally good news that it is still going down, but I was thrown off by the call because they have not been consistently calling me with the results...)

I have been a little nervous for my appointment today and had a hard time falling asleep last night because of it. It has taken a couple of days for my bowels to feel back to normal after the barium drink from my CT scan.  M&M left for camp this morning so my mom came over to watch the kids for me.  I showed up at my appointment and when the nurse practitioner came in to talk to me she started out by saying that they had the results from my CT scan and there was something weird on it that they are not sure what to make of.  On the scan there is a small nodule looking thing on one of my adrenal glands (which are on the top of the kidneys).  It is only about 1 1/2 cm in size.  She said that they don't think it is related to the cancer at all because that is not a normal place for the cancer to reappear and my CA-125 marker number has actually decreased again since my last blood work (it is now at 22).  She said that they would bring the scan up on the computer and have the doctor look through it with me to show me what they are talking about.

Once the nurse practitioner finished up my exam she left and then came back a few minutes later with the doctor.  She pulled up my CT scan on the computer and showed me the nodule that they are seeing in the scan and then she went back through my previous scans to see if she could spot it in the previous scans.  It was hard to tell on my scan that I had in March, but on my scan in December and my first scan back in October the doctor thought that she could see the exact same nodule in the same spot in each of the scans.  The radiologist just checked my current scan with the one in March and since he/she didn't see this nodule in the scan marked it as something new.  My doctor said that she would call the radiology department and have them look through the scans with her to make sure that she was seeing what she thought she was.  If this is something that has been there for a while and hasn't changed at all then it is not something new that we need to worry about.  Other than that my CT scan looked fine and all of my lab work was normal.

So after meeting with the doctor I went over to the infusion lab.  Once they called me back to get me seated the nurse came and told me that the doctor was on the phone and wanted to talk to me.  She said that she had talked to the radiology department and that they agreed with her that this nodule was on the previous scans and they just hadn't noticed it before.  They will just keep an eye on it with future scans but we feel that it is not cancer related.  And apparently it is too small to get a good picture on with an MRI so we are just not going to worry about it.

Other than that my infusion went very smoothly and I didn't get the headache with it that I got the last time which was nice!

Now that my treatments have stopped, except for the trial drug, I will not be posting as often - there's just not that much to blog about. My energy is slowly coming back, but still not quite up to normal. The hair on my head is also slowing coming back. Right now I am at the fuzzy stage. You can't really tell that I have hair though unless you look up close or feel it. I imagine it will be a good several months before it is long enough to do anything with (or to go out in public without a wig or hat on).

I did get the results back from my mammogram a couple of days ago and there was nothing abnormal that they were able to see in the images.

Bum deal today!! My parents came by my house this morning so that my mom could watch the kids and my dad drove me to the clinic for my Dr's appt and infusion. Traffic was a mess this morning so we got there a few minutes late and then when the Dr came in to see me he said that they couldn't give me the infusion today because my platelet count was too low! Since I'm receiving the Avastin as part of a clinical trial we have to follow all of their protocol under what conditions I can and cannot receive treatment. The Dr who I met with said that if it wasn't for the study they would give me the infusion anyways because the Avastin doesn't affect the platelet count at all and doesn't really have anything to do with it. The first comment that the Dr made when he walked into the examining room was that I looked tired! I said that I was hoping it was due to a low red blood cell count and after he looked at those numbers he thought that that was probably the case and that my number should rebound here in the next week or two. We think that all of the chemo treatments have finally caught up with me and it is taking me longer this time around to rebound. Even though I wasn't able to receive my infusion today, I'm just glad that this didn't happen on one of my chemotherapy days because that really would have affected things more since that is an all day treatment. So the plan is to have me come back in on Monday and hopefully my platelet count will be back up by then (my number today was 59,000 and it needs to be at 75,000 or higher - normal range is 170,000-450,000). I will go straight to the infusion room and have my labs drawn there and if everything is in the acceptable range then I will have the infusion, if not then I will have to come back in on Wednesday to meet with the doctor. The only problem with Monday is that they had already scheduled me to have a mammogram on Monday at a clinic closer to my home, so they rescheduled that for early afternoon and my infusion will be in the morning (hopefully).

The Dr also said that he had looked at the results of the CT scan and that there were no signs of cancer evident in the scan. He said that there was one spot in the liver where the resection took place that showed some abnormality, but after talking with the radiology tech they were confident that it is just due to the healing still taking place in the liver and that the abnormality was consistent with someone who has had liver surgery. They will keep a close eye on that spot in future scans, but at this point it is not a concern.

After the meeting with the doctor ended I had to go over to the room where my labs are done so that they could de-access my port. So much for leaving it in!! It was a little bit of a pain during the night because it was a little uncomfortable to have my arms close together which is how I usually sleep. I finally had the thought to put a pillow in front of my chest so that I could wrap my arm around it and not have it touching my other arm.