Trimmed the hair around my ears today.  It has been getting way too long around my ears and it keeps poofing out, especially when I wear sunglasses!  (Apparently poofing is not a word - at least according to blogger.)  I've been debating what to do with my hair.  I don't mind it being short, I just don't think that I will be able to keep it nice and trim if I keep it at this length.  I'm not the type of person who can/will take time out of my schedule every 6-8 weeks to get my hair done - that's just not my personality.  Maybe when my kids get older and I have more time on my hands (but then again maybe/probably not).  At this point though I think I need to trim a little here and there until the hair on the top of my head catches up with the hair around my face and the back of my neck.

Still have the weird rash on my arm.  Sometimes it really itches - especially at night.  I haven't been doing any work out in the yard and I can't think of anything that I have come in contact with that would cause this reaction on my arm.

I noticed a weird rash on the underside of my right forearm today.  I'm not sure if it has anything to do with my treatments, but I want to document it.

I've also had some annoying gum bleeding with my front top teeth.  Sometimes when I brush and then spit the toothpaste out, there is some blood in it and then I'll notice that the top gums are bleeding.  There have also been a couple of times where I'll just be going about my day and then I'll notice the taste of blood in my mouth and it is coming from those top gums again.

I all makes me wonder if these treatments I am doing are going to end up being worth it or if they are just causing more hidden problems that we'll find out down the road.  Where is the point when the risks outweigh the benefits??  That's what I'm struggling with right now...

Pretty routine infusion yesterday, if there is such a thing.  When I got there and seated (finally a better seat this time), the nurse who was accessing my port asked if she could show it to the student nurse that was working with her.  She had never seen a port before and I said that I didn't mind at all.  The nurse then talked to the student a little about ports and then showed her the procedure for accessing it.  When she was finished the student asked me if it hurt at all.  I told her that it really didn't feel any worse than having the needle put in when you have blood drawn from an arm vein.  I guess that the needle is a little bit thicker, but once it is in I really don't feel much at all.  The nurse then said that some people use the lidocaine cream and I said that I have had some skin reactions to it so I don't use it anymore.  I also haven't really noticed much difference from when I used it those few times to not using it.

After that the nurse for my infusion came and asked me how I was feeling and then a series of questions about side-effects.  I responded no to all of them and she said, "Well, you're boring, aren't you?  But that's okay, we like boring."  My wait for the avastin wasn't too long today so I was in and out in a relatively short time, which is fine with me!

I think that one thing that my cancer diagnosis has taught me is that we need to be careful what we say to people and to not make assumptions just based on one's appearance.  I've had a couple of instances over the last several months that have really struck the wrong chord with me and I know that I need to just take it in stride and recognize the fact that people don't always know the whole story. Our church building is frustrating at times because sometimes it is super cold there and sometimes it seems really warm.  Twice over the last few months I have been in the church building and have commented to someone about how cold I think it is, only to have the person respond back to me that they think it is warm and that I'll understand more when I get older like them.  Well, guess what?  Even though I am/look young, I have gone through a surgically induced menopause - a total hysterectomy.  And yes I have hot flashes and did quite often until I found something that works for me to combat the menopause symptoms.  So on the one hand I'm a little irritated that people just presume that what they are going through I can't possibly be going through as well and on the other hand I'm grateful that I've found something that works for me so that I very rarely have hot flashes anymore.

I need to make a post about a side effect that I have had before I forget the details.  I've been hesitant to write about it for some reason, but several months ago I started having quite a bit of pain on the bottoms of my feet.  Usually it would only hurt when I first got up in the morning or if I had been sitting down for a long time in the same position.  At first I thought that it was just aches and pains from getting older, but when I mentioned it to my doctor the last time I saw her she said that it could be a residual effect still from the paclitaxol.  Then just the next day or so after mentioning it to my doctor, it went away and I haven't really had the pain since then.  For the longest time though I  was feeling like an old lady whenever I got up to walk anywhere and it was really annoying!!

I've had some comments made to me lately that I haven't been sure how to respond to.  I have run into several people over the last few weeks who have not recognized me at first because of my short hair.  They have then gone on to make comments about my hair and asking if I like it that length and asking when I cut it.  Sometimes I just keep my answers short so that I don't have to mention my cancer, but I have a hard time not telling the truth when I respond.  Truthfully I did not cut my hair, it fell out for the most part.  (Although I guess technically we did shave it so that we wouldn't have to find hair all over the house and my pillow.)  Yes I am fine with my hair the length that it is at right now, but I don't think that I ever would have chosen this length on my own.  Just yesterday I had to show my driver's license to someone and their first comment when they saw it was, "Oh you had such pretty, long hair in your picture!"  I just said, "Thanks" and left it at that.

A couple of weeks ago our family attended a picnic put on by our orthodontist.  The manager for his office was there and her son and M&M were on a soccer team together a few seasons ago and they are also in our LDS Stake.  She hasn't seen me since my diagnosis and she made some comments about my hair and was asking when I cut it.  I decided that I didn't mind telling her (since no one in that office has known up to this point) so I mentioned that I was diagnosed with ovarian cancer last October and she was completely blown away.  She wasn't sure how to respond and felt embarassed for asking the questions that she had asked (even though at this point there is really no way for people to know by looking at me that I have had cancer).  I kept telling her that she was fine and that I would not have shared with her if I didn't want her to know.  We then got on a discussion about how I found it and what treatments I am going through.  It was a little awkward at first, but I am slowly getting better at talking about the cancer.  I still get a little emotional, but after the first little bit I am composed enough to be able to talk about it reasonably well.

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...)

Dr's appt at Huntsman today.  It still feels weird to only come up here to the Huntsman Cancer Institute every 3 weeks and to only meet with my doctor every 6 weeks!  Today while I was having my port accessed and blood taken for my labs, the nurse mentioned to me a fundraiser run that is coming up in September, specifically for Ovarian Cancer (and other gynecological cancers).  Another nurse went out and got me a flier about it.  It will take place on September 8 in downtown Salt Lake.  I found out some more information about it online.  Now I need to decide if it would be worth it for me to go and take some of my family with me or do I need to be at my kids' soccer games that morning.  (I am helping to coach my son's team this year and then our 7 year old is playing for the first time.)

Afterwards I met with the doctor and things are looking good for me, so I keep telling people that we are at the wait and see phase - which is a hard stage to be at.  Everyone is amazed that I am not taking medications for anything, but I'm not sure what they expect me to be taking.  I asked the doctor today if she would recommend that I take anything and she just said I could take just a standard over-the-counter multivitamin if I wanted and she also said that she usually recommends women take calcium tablets with vitamin D in it.  Maybe I'll take a look and pick some up next time I'm at the grocery store.

I got another winner of a seat today in the infusion room...  In the far corner once again with a great view of the cinderblock wall outside. ;)  When I checked-in for my infusion they told me that they were behind and the wait would be about a half hour - just to get in the infusion room.  After they finally called me into the infusion room it was quicker than it has been the last few times I have been there.  They took my blood pressure and then maybe 20-30 minutes after I got in there they had me hooked up to the Avastin.

Met with my surgeon last week (Aug 7).  I am feeling fine and everything checked out fine with my appointment.  She asked me how long I was going to be on the Avastin and I told her that the Huntsman team said that I will be on it indefinitely.  The way she asked me though I was curious what she thought about the drug, so I asked her.  She said that since I was sooo young she thinks that it might help to give me an extra edge to keep the cancer at bay.  She said that if she were in my position she would probably do it as well.  Right now since I haven't had any noticeable side-effects I think we will carry on with the Avastin.

Picture updates of my hair:

This first one is with my hair standing straight up after my shower.  I wanted to show this one because you can't tell how long my hair is after I put mousse in it and force it to lay down on my head.

I have quite the bed head in the morning when I get up.  This morning my son saw my hair after I got out of bed and he said, "Whoa Mom!  You're hair's getting really long!"  I'll try and get a picture of it one of these mornings.

So here are some advantages to having very short hair:

- I haven't had to use a brush in a LONG time.
- You save money on shampoo and conditioner.
- Hair dries almost instantly after showering or swimming.
- Hair never gets in your eyes.

My hair is at a length now where I'm not sure what to do with the hair around my ears.  If I was going to keep my hair at this length then I would just trim it around my ears but I think I still want it to grow out more so I am hesitant to do much cutting.  Right now I try and get the very front hair to come down the side of my face and then I try and sculpt the rest of the hair around and behind my ears.  The problem comes when I wear my sunglasses because it moves the front hair back as well and then it looks funny and sticks out to the side.  It's so funny how there are different problems at different lengths!  At least at this length I don't have to worry so much about my scalp and ears getting sunburned!

I have a little bit of a headache today but not as bad as I have had after some of my treatments.  I've been trying to drink more water because I'm wondering if some of my headaches are being caused by dehydration in addition to the Avastin.  I had my vision act weird today again.  I was driving home from dropping my daughter off somewhere and my vision started going kind of blurry.  Once I got home I laid down for a little bit and tried closing my eyes some.  It finally cleared up after a little while but it is quite disconcerting.  I'm not sure if it is caused by not getting enough sleep or if it is a side effect of the Avastin...

On Wednesday I had another Avastin infusion.  My last 3 weeks have been crazy again and there hasn't been a lot to blog about on this blog.  I pretty much feel just fine all of the time.  My feet for some reason feel a little sore when I first get up in the morning, but usually after a few minutes of walking around they feel fine again.  Sometimes when I am sitting in one position for a while I am a little stiff when I get up, but I'm not sure if that is just old age :) or a longer term side-effect of the chemo.

Wednesday was the first day of school for my elementary school kids.  At first they had my treatment scheduled for the afternoon, but I wanted it early so that I could be sure to be home when the kids got home.  I decided it might be nice to take M&M with me to one of my infusions before school starts for her so that she can see what it is like.  Technically visitors are supposed to be at least 14 years old, but I figured she was close enough since her birthday is in just a couple more days.  And I knew that she wouldn't be a distraction to anyone there.  The only problem was what to do with my younger two kids.  At first we thought that DH could just work from home but he had a dentist appointment the following day so we weren't sure if he should miss both days.  After talking with my parents we worked it out so that DH could drop the two little ones at their house on his way to work and then I would pick them up afterwards.

My appointment was for 9:30 a.m. and we got there right on time.  After getting called back into the infusion room they accessed my port and then we sat waiting and waiting and waiting...  And unfortunately we had probably the worst seat in the room.  We were all the way on the far end and all we could see out the window was a little part of the sky and a brick wall.  We decided to turn the T.V. on and found a soccer match - the U.S. Women vs France - for one of the Olympic qualifying rounds.  At one point I asked my nurse what was taking so long and she said that unfortunately because of the holiday the day before (Pioneer Day), they were a lot more busy than usual.  She said that they were open on Tuesday for Pioneer Day, but they had a total of about 14 patients for the whole day.  Most people rescheduled for either the day before or the day after.

Finally around 11:20(!) the nurse brought the Avastin to me and hooked me up to it.  We got out of there around noon.  I took M&M upstairs to show her around the building a little.  Then we went down to our car and drove to my parents' house to pick up Kay and MJ.  We stopped at McDonald's on the way there to pick up some lunch.  I'm glad that M&M was able to come and share the experience with me before she starts into a crazy schedule of marching band and school!

Okay, here are some updated pictures of me.  For a while I was only wearing my wig to church and would wear a hat most other places (or go without anything on my head).  June 17 was the first time I went to church bareheaded since I started losing my hair in November.  It felt good and weird at the same time.  I much prefer not having to wear anything and I think I look alright with my hair the length it is right now.  It has been weird trying to make out the color of my hair.  At times it looks like it has a frosty look to it - but I'm thinking that is a combination of some silver and blonde hairs that are coming in along with the brown.  I am at the point now where I need to put some mousse or gel in my hair or it has a fuzzy look to it.  Other than that it is really low maintenance!

Fuzzy hair right after a shower:

With a little bit of mousse in it:

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!

I had my CT scan today (the day after returning from being out of town for almost 2 weeks). Things have been super busy trying to unpack and get things cleaned up from the trip. Plus it doesn't help that we got in late last night and I am just super tired from everything that we did! I was getting ready to eat a late lunch this afternoon when I happened to glance at the instructions for my CT scan and it said not to eat or drink anything 3 hours prior to my scan. Well, at that point I was within that 3 hour time span so I had to wait until after my scan to eat anything. I also had to drink the wonderful barium solution and it was starting to make me feel a little nauseous at the end since I hadn't had anything to eat since breakfast this morning. I ended up having to wait an extra half hour for my scan because they were having a hard time getting an IV into the patient they were scanning right before me. I decided to post a comment to my facebook page about having to wait and having an empty stomach and I got so many comments from concerned people about my scan and hoping that things turned out well with it. I honestly wasn't nervous at all for my scan until I read all of those comments and got to thinking about what results they might find in the scan. Now I have to wait until Monday to find out what those results actually are. This was just a standard abdominal/chest CT scan that I will have done every 3 months to hopefully catch any cancer early if it decides to grow back. After the scan was over and I was on my way home I ate a few snacks that I had taken with me. Once I got home though I started feeling a little sick and ended up having to run to the bathroom with some diahrrea. I think that this is just a side effect to the barium drink. I was told that there is something else I can take in place of it so I'll have to ask about that before my next scan.

Sorry that I have been MIA lately. The month of June was totally crazy for our family! I just realized that my last post was on the day of my last infusion so I want to mention that just briefly. June 6th I had an Avastin infusion and it was pretty uneventful. It was the last day of school for my elementary school kids, but my oldest daughter was already out of school so she babysat the younger two for me. I got home just a few minutes after the kids got home from school. The infusion took longer than I had planned (again)... It seems to take longer and longer each time just for them to get my infusion medication from the pharmacy. Once they finally get that things go pretty quickly. I didn't even need any labs last time but I still had to wait almost an hour before they finally got the Avastin for the infusion... I have been noticing a headache during the infusion time and it usually sticks around for about a day. After the infusion I had to go up to the radiology lab to pick up my yummy barium drink for my CT scan that will take place on June 29th.

I hope that no one has been worried about me! I just haven't had a lot of free time lately to do much blogging! The school year is coming to an end today and things have been crazy between end of the year school activities and the swimming lessons that I have had the kids in. I have been feeling just fine lately and have been able to do just about anything that I want to. Just to give you an idea: Yesterday I went on a zoo field trip with my 1st grader (and took along my oldest and two youngest kids). As soon as we got home I dropped off M&M and Kay and MJ and left again to drive to the school for my 3rd grader's class awards program. Then after we had dinner that evening I went outside and mowed the front and back lawns in just over an hour (and it is a push mower, not a self-propelled mower). I think that that is the quickest I have ever mowed the whole yard! I thought that I might be sore today from everything I did yesterday, but I feel just fine.

Things have also been crazy because we are making plans for some trips and family visits coming up this summer and some of those events are almost upon us!! It is definitely going to be a fun, eventful summer!

I had dinner at my parents' house this evening and my younger sister and her family were there as well.  My younger sister is also positive for the BRCA-1 mutation gene and has some difficult choices ahead of her.  She said that her OB/GYN wants her to decide now how many kids she wants so that as soon as she is done they can remove her ovaries (they recommend it be done at age 35).  She just had her second child in November and will be 34 in August.  I told her that looking back I don't know that there is anything that I would have done differently or could have done differently.  I was 35 when I was diagnosed with my cancer!  I also felt very strongly before we had MJ that there was another spirit that needed to come into our family so I know that I was supposed to have her.  I also know several people with the BRCA-1 mutation who had their ovaries removed when they were much older than me and never developed ovarian cancer.  Unfortunately I don't have any good advice for my sister or anyone else in a similar position except to pray about it and do what feels right for you and your situation.  The unfortunate part about ovarian cancer, and the reason that it usually isn't detected until stage 3 or 4, is that there is no definitive test to diagnose it and there are no symptoms that are conclusive to it either.  We have no idea how long I had my tumors before we found them - sometimes the cancer is very fast growing.  My sister also knows a fellow nurse where she works that was diagnosed with ovarian cancer in her 20s but didn't want her ovaries removed because she still wanted to have kids.  I can't remember the details of what kind of treatment she received at the time but I know that they treated her and she kept at least one of her ovaries and went on to have a couple of kids.  She then had the cancer come back and I think at that time she had the ovaries removed and went through more chemo.

I stopped penciling in my eyebrows this week and haven't been wearing my wig as much.  I've started wearing some of my hats more often again.  I'm still a little hesitant to go out without anything on my head.  Maybe another week or two.  It's nice to not have to worry about my eyebrows anymore though!

My husband is out of town this weekend so I have been on my own with the kids.  Yesterday the weather cooled off a lot and I was feeling good so I mowed the front lawn in the afternoon while MJ was napping.  I thought that I might be sore today from the mowing but luckily I wasn't!  My kids had 2 soccer games back to back today so we spent a chunk of the late morning/afternoon at the games.  The weather was perfect for soccer but it turns out it was a little sunny too because I ended up with a slight sunburn on my right arm and so did Kay - not too bad though.  Luckily my hat covered my head, face and neck well so I didn't get burned there as well.