I have been pretty negligent about updating this blog lately so I will try to update everyone now on what has been going on. Here is a somewhat condensed version of the last 8 months or so. I will fill in more details as needed.

I was doing chemo treatments of carboplatin every 3 weeks with neulasta shots the day after to help boost my white blood cell production. Still even with the neulasta, I had a couple of instances where my white blood cell count was too low and we had to put off treatment for a week. My oldest daughter got married a few days after Christmas and we had a lot of company in town for that. My counts were too low for the treatment that I was supposed to have right before Christmas so we decided to put off the treatment until after the new year. My CA-125 counts went down initially with these Carboplatin infusions, but then they started to creep up again shortly after the new year. I had a CT scan at the end of April and it showed some new spots in the lungs and in my lower right abdomen that were concerning to the doctors and indicated that the Carboplatin was not working as well as we want it to.

So starting in May they switched me to a new chemo drug called Doxil, combined with a drug I was on when it was in the experimental phase, called Avastin or Bevacizumab. Before I was able to start on the Doxil, they had to do an Echocardiogram on my heart to make sure that it is strong and working as it should. I will be given the Doxil every 4 weeks and the Avastin every 2 weeks. The biggest side effect with the Doxil is sores in the mouth and on the palms of the hands and soles of the feet. I am not supposed to lose my hair - YAY!

I had my first Doxil infusion on May 21st. They do not give me the Benadryl as a premed for the infusion so I won't be knocked out like I was for the Carboplatin! YAY! The fun part of the infusion though is that they put ice packs on my wrists and my ankles and give me ice chips to suck on the whole time during the infusion to try and prevent the sores on the hands and feet and in the mouth. The idea behind the ice is that it will restrict the blood vessels to help prevent the Doxil from getting to those areas. Other than that the infusions aren't too bad and so far I haven't really had any side effects except the bottoms of my feet are more sensitive and I made the mistake of walking outside barefooted for longer than I should have and ended up getting a really big sore/blister on the bottom of my right foot near the heel. It was pretty painful for a few days and I had to walk around with my tennis shoes on for added cushioning. I still have kind of a skin flap where the sore was but I don't want to peel it off and create any more sores!

I then had an Avastin infusion 2 weeks later and then we left town for a week and a half to visit some family in Washington and northern Idaho. I was fitted for a thigh-high compression stocking just before we left town because I was having some swelling in my left leg - we are not sure if it is caused by the tumor that they weren't able to remove last August or if it some nerve damage or scar tissue caused by the tumor. I wore the compression stocking when we were in the car for a long time and a couple of other times, but it was rubbing the inside of my thigh pretty good and causing some sores there from the silicone that holds the stocking in place. Since our trip my leg hasn't really been swelling up so hopefully that means that the Doxil is working...

My next Doxil infusion was supposed to be on June 18th but my white blood cell counts were way too low so we had to put it off a week. By the next week my counts were much better but when I went in for my infusion my blood pressure was too high... (This is sometimes a side effect of the Avastin.) After taking it several times over the next hour, it still didn't come down where they needed it to but they got permission to go ahead with the infusion provided I would start taking my high blood pressure medication again. So I started taking it that night and the next day when I went back in for my Neulasta shot, my blood pressure was just fine... So either the blood pressure medication works really quickly or there was something weird going on the day before.

This past Monday, July 9, I had my Avastin infusion. My blood pressure was not an issue again which was a relief!

I will say my biggest side effect at this point in this round of my treatments is tiredness and the bottoms of my feet are feeling tender. Some days I have to wear my tennis shoes or slippers around the house so it doesn't hurt to walk. I have a hard time getting up in the mornings - I am not sure if it is because I am not sleeping great at night or if it is a side effect of the chemo treatments. Either way, I have a hard time getting up the energy to get things done some days and it is annoying! One of the side effects of the Avastin is that I wake up every morning with my nose super dried out - to the point where it hurts! Once I blow my nose a few times though it is much better. I have had a few canker sores in my mouth but I have started using a mouthwash that I made with some essential oils and the canker sores that I did have quickly went away and I haven't developed any since! So I am crossing my fingers on that one.

At this stage we will keep monitoring my CA-125 number and I will have my next CT scan probably in another month or 2 to see if the Doxil is working or not. As of right now, other than the tiredness and my sore feet, I feel pretty good and my left leg is feeling better than it has in over a year - although there is still some pain there when I press on my inner thigh.

So by the time Thursday rolled around I was feeling really, really sick.  All I could do was lay around on the couch and sleep.  I had no desire to eat anything and had no energy.  I was also having a really hard time getting myself to even want to take the study drug.  By this point I have tried two of the three nausea medications that I was given and neither seemed to do any good other than to make me constipated.  This morning I emailed the study coordinator to let her know what was going on and that I wasn't sure I wanted to continue on the study if it doesn't get better.  The nurse practitioner called me back shortly after that and we talked about some things we could try.  She had me get the last prescription filled and said to take it 30 minutes before I take the veliparib.  She also decided to send me down to the clinic to get some I.V. fluids with anti-nausea medication as well.  My kids were off-track at this time so I was able to leave them home and go over to the satellite clinic.  After some problems with the nurse not quite knowing what she was doing with using my port things went fine and I was able to get the fluids and I felt quite a bit better afterwards.  I also was given a prescription to take at night that is supposed to increase my appetite so I will feel like eating again.

By this point in the week I had skipped out on mutual on Wednesday night and ended up canceling soccer practice on Thursday.  I also was supposed to teach a combined YW lesson on Sunday but found someone to trade with me so I can concentrate on feeling better.  I had been contacted by my relief society president on Thursday morning so I emailed her back and let her know what was going on as well and we decided to have a few meals brought in until I felt better.  So she brought the first meal that night which was a great help.  My poor husband has been going to work and then getting home around 6:15 in the evening with me on the couch, the house a mess and the kids hungry.

Last night I started feeling a little nauseous.  I feel like I need to try and keep something in my stomach at all times or I will start to feel sick.  This morning I went to the grocery store and was feeling alright but not too long after I got home I started feeling sick and ended up throwing up.  After that I felt a little better but then later that evening I didn't feel well at all.  On Monday the doctors gave me 3 different prescriptions to try in case I get nauseous.  So I went and filled the first prescription and tried taking that.  It didn't seem to make much difference.

Started my first doses of Veliparib today.  I went in to meet with the doctor and have some labs drawn. They also did another EEG of my heart (for the study).  I took the first dose after the appointment and so far feel fine.  The most common side effects are nausea and lack of energy.  They said that it side effects usually come within the first few hours of taking the first dose.  I will be taking two pills twice a day.

Well, yesterday I had a dentist appointment and things are not looking good with my mouth...  I have been very good about brushing and flossing since a few years ago when I had to have some extensive dental work done and I have been going to the dentist regularly - at least twice a year.  Well, yesterday the dentist found 5 cavities on my teeth and he said that I had more plaque build-up than he has ever seen on my teeth...  He kept making comments on how damaging to the mouth a lot of these cancer drugs are.  This is making me question even more if I want to stay on the Avastin or not...  I have to go back in to get the cavities drilled out and filled and the dentist is putting me on a prescription fluoride toothpaste.  He said that if that doesn't work at keeping the cavities at bay then we may have to switch to me sleeping with fluoride trays on my teeth at night.  He said that he has several other patients who have had dental problems while undergoing cancer treatments and a couple of them he has had to switch to the fluoride trays.  Definitely more to think about now...

My CA-125 number is now down to 19!

I've had a little bit of eye-twitching in my left eye once again.  It comes and goes.  Not sure if it is related to the infusion or not.

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...

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 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...

Headache city today! Other than that I have felt alright. I think my bowels are a little stopped up right now, so I am slowly taking some Senokot so that I hopefully won't go to the other extreme like last time. I tried to run a few errands today but after going to another fabric store with the little girls I didn't feel like I had the energy to go to the grocery store with them as well. After lunch I was able to cut out some fabric for one of the girls' Easter dresses and then after dinner I went to the grocery store without any of the kids.

Well, the nurse from Huntsman called this morning to tell me that my CA-125 number has dropped to 26! So I am down in the normal range now! Yea!! I didn't get a chance to talk to her so I'm not sure if that means that I am officially in remission or what. I guess I will find out for sure in 3 weeks when I go back in to meet with my oncologist.

I'm not sure what's up with MJ's sleeping schedule but it has been completely messed up since she got sick the last time. She didn't take a nap Tuesday or Wednesday of this week (just stayed awake in her bed for an hour or two) and today she played in her bed for an hour before she finally fell asleep. Then once the kids got home from school they woke her up before she was ready so she was completely cranky for a while. When I put her down for bed this evening she has been playing and crying off and on now for the past hour. Hopefully we will get back on a regular schedule here pretty quickly!! I got a facetime call from my oldest sister today and it was nice to talk with her for a few minutes.

I forgot to mention yesterday that on our drive up to the Huntsman Institute, I realized that I had forgotten my purse at home with my I.D. in it. Unfortunately we were almost there and it didn't really make sense to turn around and go back for it. The Huntsman Clinic has a policy that each time you go in for an appointment you're supposed to have an I.D. and your insurance card with you. We decided to just take a chance and hopefully they would let it slide this time. Plus it is usually the same receptionists working there each week I go in so I was hopeful that they would recognize me and not worry about the I.D. Well, as luck would have it when we got up to the clinic there was a man working behind the receptionist desk that I had never seen before! He asked for my I.D. and insurance card and I mentioned that I had forgotten my I.D. at home and he said that that was okay. Whew! DH had his insurance card with him so we used that and then DH paid the copay for me. DH and I have discussed the I.D. policy before and have wondered who would want to go in to a cancer clinic to have lab work done or receive chemo treatment just for fun, masquerading as someone else??

Side effects so far from chemo treatment #3:

- Super tired - Since Saturday I have just wanted to lay around not doing too much of anything. My sleep has been good some nights and poor other nights. Saturday morning I went to the two baptisms for our ward and played some prelude & interlude music for it. It's been a while since I've played like that. That night I didn't sleep too well with Kay waking up partway through the night and then her waking up MJ when I tried to take her back to bed. My husband is also battling some head congestion so his sleep has been a little more noisy than usual - keeping me up in the middle of the night. I ended up sending the family to church without me and then I joined them for Sacrament Meeting.

- Lack of taste - Quite a few foods just have no taste to me the first week or so after my chemo. Two of the foods that have the most altered taste that I have noticed are yogurt and chocolate. Yogurt just tastes nasty to me and chocolate has hardly any taste at all. On Sunday I made a potato/cheese soup for dinner that the whole family loves and I sat down and ate a bite and could hardly taste anything - it was very disappointing!

- Tingling - The tingling in my fingers and feet hasn't seemed to be as bad so far this time around. I am crossing my fingers that it will not get any worse.

- Headache - My head has been absolutely pounding these last couple of days. It makes it hard to think clearly and I find myself super short-tempered all day long - especially with the kids.


Yesterday I put my wig on after my shower in the morning and came down to show Kay and MJ. Kay immediately saw me and said, "Whoa! I like that on you." MJ just sat there staring at me for the longest time trying to figure out what was going on! I think the wig looks fine. It is just a very different look for me - not my usual style so it will take a little bit of getting used to. I figure that I need to start feeling comfortable wearing it around the house or I will never feel comfortable enough to wear it outside of the house. I think I want to take a little bit of time to try styling it a little more to my liking, but so far I haven't had the energy to do that.

Sickness is abounding in our household! DH, MJ, M&M and Blondie all have coughs/colds and I think we have had some type of stomach virus going around the house as well. DH was up for a good chunk of the night last night with some stomach problems and MJ and Kay have had a little bit of something too - luckily no throwing up... My bowels have not been completely happy either, but I'm not sure if it is the same thing or side-effects from my chemo. MJ has been super whiny today and I hope that she starts to feel better soon! I don't have a lot of energy right now to deal with sick kids...

Yesterday I spent the day doing some cleaning/organizing and getting the laundry put away. I took a couple of the kids to the library and then a quick stop at the grocery store. I had a hankering for some pumpkin bars with cream cheese frosting so M&M and I made the bars yesterday and then frosted them today. Delicious!!

I didn't sleep great last night for some reason. I wish I could just get a decent night's sleep and not keep waking up 2 or 3 times a night... I had a scout meeting before church this morning and then ended up going to the whole 3 hour block of church - even though I wasn't planning on doing so at first. Right now my immune system is supposed to be at its lowest point so I need to be really careful around people. They say around day 8-14 from my chemo treatment is when my white blood cell count will typically be at its lowest. It's been hard though because that is around the time when I really start feeling better and have more energy and yet I'm supposed to avoid crowds and people that are sick (which is going to be hard as we go into winter/sick season here). I've been battling a headache all day. I'm not sure if it is from the chemo or from not having slept well last night.

I just have a very thin fringe of hair at this point. I still look okay with a hat, but it is looking very thin and wispy. I have a few comb-over type strands on the top of my head and then a little bit on the sides. My kids think it looks like an old man. Unfortunately my scalp is very sensitive with pimple-like bumps on a good portion of it - not very comfortable at all - and it itches...

Well, I threw up last night for the first time since starting chemo. It was weird because I woke up around 3 in the morning and felt just fine. I used the bathroom and then went downstairs to get something to eat (I have been feeling a little nauseous lately if my stomach is empty). After I came back up to bed I was laying there and the furnace was on and I started feeling really hot and sick, but I didn't want to get up. Finally I decided I better hurry to the bathroom. I took one of my anti-nausea pills and after doing some business for a minute started feeling like I was going to throw up. Luckily I remembered that I had a cleaning bucket under the sink and managed to grab it in time to throw up in it... I felt much better after a few minutes and was able to go back to bed feeling fine.

DH stayed home from work today to get some yard work done. He was hoping to do it on the weekend, but for the second weekend in a row we are supposed to get a cold front with snow coming through and the work needs to be done before winter sets in. My dad came over and worked with DH while my mom and I and the girls went to Huntsman for my blood work. It was supposed to be just a quick blood draw again and then a quick injection so we thought the girls might have fun with the diversion. Well, as I am learning with the clinic I go to, nothing seems to go quickly or effortlessly... When I checked in the lady said that she would quickly get the order called in so my injection would be ready to go. Then they called me back and I sat waiting for several minutes before they took me in to draw my blood. (The nurses that draw the blood said it had been a super busy morning already. They had had as many people so far that day as they had all day the day before.) When the lady was getting the order ready for the blood draw she thought that they had the wrong test ordered so she called my nurse, Stephanie, and she said she would look into it. A few minutes later she called back and said that the test order was wrong and she would be by with the correct order. So they finally got the blood order right, then the nurse said that they would be by to take my blood pressure and then I could go. I told the nurse that I was supposed to have an injection today as well - she said she'd look into it. After probably at least a half hour of just sitting there, they finally got things sorted out and got the injection for me and administered it to me. (I heard that there was a little bit of hassle either from the pharmacy or the insurance because I am supposed to get the injection every 28 days and it had only been 27 days...) I was probably back in the office for almost an hour during which time my mom had to entertain MJ and Kay by wandering the halls with them and feeding them some snacks that she found in the diaper bag...

After we came home and ate lunch I took MJ outside to play while I sat in the sun and watched DH finish up his work. It was a little on the cold side, but the sun felt really good and MJ loved running around out there.

The rest of the day I really fluctuated between feeling good and not feeling good. My stomach was upset a little off and on and I had a hard time keeping a constant body temperature. One minute I would be freezing and then a half hour later I was dying of the heat. My feet and legs have been find today, but my fingers have been a little tingly lately. It hasn't affected me too much, but it is just kind of annoying. I've also had a bad headache off and on throughout the day. And wow my scalp hurts today - kind of a combination of itching and just general discomfort - especially when I touch it.

A couple of neighbors stopped by with dinner and one of the activity day girl groups stopped by with some cute turkey cupcakes they had made.