The House

This was the third week of chemo for me. I felt really good but of course that doesn’t always mean anything. Once again my white blood cells are really low and I have virtually no baby white blood cells. My doctor decided to hold chemo this week. Can’t say I was surprised! Since I had two weeks of chemo I figured one of my numbers would be too low.
I did learn that I am done with my treatment plan. Apparently the doctor has to enter a time length for treatment into the computer and I was scheduled for a 4 month treatment plan. So I know that sounds like good news. It just might be. Next week I will go for scans and then the following week I will meet with my doctor to go over all those scans and decide on what to do. I could be doing one of the following:
1. If the scans come back stable or No Evidence of Disease then I would be taken off the chemo and would start back on a hormone. Not sure what hormone I would take but since I have done two of these and they worked for 8-9 months I could go back on one of those or I might go on a different one. We will see what the doctor thinks.
2. If the scans show that the chemo is working and the cancer is shrinking but I could use a little more of the chemo, the doctor would put me back on the Abraxane for another 4 months and then do another round of scans.
3. If the scans show that the chemo didn’t touch the cancer or it seems to be spreading then I would have to try another chemo.

I did get some good news regarding my CTC tumor test. This is the test that started at 861 and has slowly dropped. My September results show that I am at a 3 which is in the normal range. While this is the best news ever, I still have to wait for the scan results to really “see” what the cancer is doing in my bones.

So last time I posted I talked about the new house that we bought. Some of you asked that I post some pictures of our house so I thought I would do that. Let me remind you that we bought this house as a foreclosure and it has sat empty for the past three years. When we bought the house the previous owners took all the blinds and bathroom mirrors. The walls are in pretty bad shape as well. Since we have sold our house in Illinois we now have that money to put back into making our new house look nice. I can’t wait because this is definitely my dream house! Beware there is a lot of pictures. These are my before pictures and you will notice in most of them there are nail holes that have been patched. We are getting ready to slowly paint the house. My hope is that as we finish each room I can post before and after photos.

Here is our living room. As you can see I still have a lot of bookcases to fill. (Goodwill has been a great place to pick up cheap books!) The bottom picture is the view from the front door. I love that it opens up to the kitchen. There is also a screened in back porch area as well as a deck.

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This room is the play room and my sewing room. It has a beautiful window that looks out over the driveway. The plan is to get a longer sewing table and some shelves with basket storage for the toys. Also I would love to get rid of the brown curtains and put some fun, colorful curtains up to make it fun for the girls.

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This is Jett’s room. We are going to get him a headboard as well as a trophy case. I think we will get him a new comforter because while I love this one it is a bit young for him. We have looked at several but Jett can’t decide what theme he wants to go with.

 

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This is the kid’s bathroom. As you can tell there is no mirror. This room was painted a bight blue with white sponged on it. I think they were going for a cloudy day look??? John threw on a coat of paint but I think we will end up painting it again.

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This is the girl’s room. We plan on getting them headboards. The girl’s room has two closets so they have enough room for all of their clothes.

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This is our breakfast area. (Not sure if that is the right name?) We thought we would leave the blinds off these windows but at dinner the sun beats into the windows and it is very hot at dinner. We may have to rethink that!

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This is our kitchen. My favorite part is that it is opened up to the living room so I can see what is going on when I cook. We are replacing the refrigerator because it doesn’t really go with the rest of the appliances and the ice maker is broken.DSCN1459

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This is our dinning room. We need to get a rug to put under the table. Also included a picture of the light fixture. It is very pretty but a bear to clean!

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This is our laundry room. I love the storage above the washer and dryer. There is also a sink which is great!DSCN1464

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This is our master bathroom. We do have a bathtub as well as a shower.

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DSCN1468  Here is our master bedroom. We are planning on getting a new comforter as well as a headboard. Right now we also have our TV stand from our old living room in our room because there is no where else to put it. Soon it will go upstairs.

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This is a room built over our garage. In Savannah they don’t have basements so this is considered the basement. Most of these boxes have garage items or basement items in them. We do have a large attic space off of this room that most of the stuff in the boxes will go in but it is just a matter of deciding what John needs in the garage and what he wants to store. The plan for this room is to make it into a “man cave” with couches and TV.

 

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Here is a picture of our deck. This picture was taken inside the little screened in porch off the living room. This porch area is nice because in Savannah we have mosquitoes and sand gnats. This allows you to enjoy the fresh air without getting ate up!

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This entry was posted on September 25, 2013. 4 Comments

Another round of Chemo

Yesterday I received another round of chemo. This would be week 2 in my cycle. I honestly didn’t think I would actually wind of getting chemo but my numbers looked pretty good. I think the doctor and chemo nurses were really surprised that they were so good. My white blood cells and red blood cells were the same as last week and my platelets actually went up. How that happened I have no idea! My mom always says that God knows when I need chemo so I know that he helps those numbers move in the right direction. And maybe when I don’t get chemo because my numbers are too low he knows I need a rest so he allows them to drop. It is great to know that I have someone who knows just what my body needs. I am still waiting to see when my scans will be scheduled so we can see if the cancer is stable yet or hopefully gone! It would be nice to hear the words NED (no evidence of disease). When you are stage 4, remission is not the term used but instead NED is what we work towards.

My hair is starting to make its comeback. I have some longer peach fuzz that is pretty patchy and now I can feel new stubble growing. This is actually the second time I have lost my hair. Both times I never was actually totally bald. This time however my hair seemed to be thinner than last time. I am kinda worried that it may not come back as thick. It makes me wonder if perhaps each time you lose your hair, it doesn’t come in as much each time. This time I also found that my eyelashes and eyebrows have thinned too. I am hopeful that if I get to stop or cut back on the chemo my hair will grow in.

I do have to say that it has been nice to finally get some normalcy back into my life. I usually get chemo on Monday and Tuesday is usually my hard day. However by Wednesday I am back to “normal.” When I was on Affinitor, I was unable to take care of my house because I was so tired all the time. It really felt that I was going down hill health wise and that wasn’t the direction I wanted to go. While my numbers were dropping so too was my quality of life. The scary part was when John’s work took him off the schedule so he could take care of me, the kids, and the house. I knew that wasn’t a good sign at all. Then I ended up in the hospital. Talk about taking a long look at your life. Did I teach my kids everything they would need in the future, did I spend enough time with them? Of course that answer was NO! Now that the chemo is working and I am once again looking at normal CTC numbers and hopefully good results on my scans, I know I need to start fixing those things. I guess when things are going good, you forget about what having stage 4 means. Now that Abby and Jett are in school, I feel as if I don’t spend enough time with them. The weekends will become about the only time we have to spend that special time together that I know my kids will need with me.

One of those things we have decided to do is to take the kids to Disney World. Abby and Jett get a small fall break in October so we are going down for a small vacation. When John mentioned this trip in June I was quite surprised. The last time we went, John said we wouldn’t be going back for at least another 5 years. Of course we lived in St. Louis at the time so it was a big trip. Now that we live in Savannah it is only a 4 hour drive so going for a quick trip is possible. When we started planning, John said that one of his favorite memories were the outfits I made for the girls and how special they felt in them. They had so many people comment on their outfits and many of the Disney characters talked to them, pointed and waved to them from the parades, and made special comments on their outfits. John asked that if I felt up to it, could I make them some special outfits again. Of course how could I say no, I mean if a daddy remembers that being special for his daughters, I knew I could at least make a few easy outfits. When I started planning and looking for ideas, I had a hard time just picking one outfit. You guessed it, I started sewing like a madwomen. I now have an outfit for each day as well as princess dresses for breakfast with the princesses (we don’t yet have a reservation but are hoping that there will be a cancellation). I still have other things I want to sew but I don’t know just how much I will finish. I do have to say that being back at my sewing machine makes me feel happy and healthy again. The girls love trying on the outfits and I think they are getting really excited. Of course I will post pictures when they are all finished as well as pics of our trip.

 

This entry was posted on September 17, 2013. 3 Comments

Good News

Yes that is right I do have some good news to share with everyone.

But let me first update you on what is going on with my chemo. Last week I was unable to get chemo because my white blood cells were too low and once again I didn’t have any baby white blood cells to replace the low ones. OK so I know that sounds very confusing. Apparently your white blood cells have a very short life span, lasting between a few days to two weeks. When I get my blood tested they also test my production of white blood cells. Apparently my body hasn’t been making any new white blood cells to replace the old ones. Because of this I can’t do chemo. So my doctor decided that last week could be my week off and I would try again on Monday. So far I haven’t had a consistent schedule when it comes to chemo. I am hoping that my body has repaired itself enough to get chemo tomorrow.

OK so I think it is time to share the good news. I know that is what you are waiting for. I actually have two pieces of good news. The first has to do with some testing results. As I have previously explained I get a CTC test at the beginning of each month. This test measures the amount of cancer cells are in my blood. If you will remember when I started chemo I was in the 800s. The last test done showed that number had dropped to 21. Are you ready to jump up and down now? My August test shows that my new level is 5. That is right folks, I am now in the single digits!!! OK I can hear you asking what does that mean. Well a normal reading would be less than 5. That means I am one number away from being in the normal range!!! Are you praising God yet? It is the best news we have had in a while, that is for sure. I am still going to have scans done in September to look at what the cancer is actually doing in my bones but hopefully it will show that the cancer is gone or at least stable.

The other good news, while not quite as exciting as what I just shared, is that we finally sold our house in Illinois. When we moved we found a buyer for the house but he couldn’t buy the house until he sold his house. Because he didn’t want to lose the house he agreed to rent it until he could buy it. It really was an answer to prayer to have at least some of the house payment paid for each month. What a great relief not to have to worry about that payment anymore.

I thought I would include a quick story about Abby. Today we went to the beach. While we were there John, Jett, and my dad all got stung by jellyfish. The jellyfish left little welts where they had stung them. Apparently they were really bad this weekend and many people got stung. While we were at the beach, we saw many people jumping and running out of the water. John decided to take the girls out to a sandbar that forms when the tide starts to go out. The girls were having a great time on the sandbar because the water wasn’t very deep. All of a sudden I hear Abby screaming at the top of her lungs. Instantly I knew she had been stung too. I have to say when I saw her leg I couldn’t believe what I was looking at. Apparently the jellyfish that stung Abby was bigger than the ones that had stung the boys earlier. Here is what her leg looked like:

photoYou can see where the tentacles brushed across her leg.

 

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These were taken an hour or so after she got stung. It started to turn really red. It doesn’t hurt anymore but I think she cried about it for about 30 minutes after the sting. The lifeguard put some vinegar on it but when we got home I read that only makes it sting more. We have never had a problem with jellyfish before but apparently Tybee has an issue at certain times during the year. We will have to be careful when we go to the beach now.

This entry was posted on September 8, 2013. 5 Comments

Stuck

This week my numbers were good enough to get chemo. While they were no where near normal I was very surprised. They had actually gone up quite a bit in only a week. My red blood cells were all the way down to 6.9 the week before and this week they were up to 8. My platelets had dropped to 67 and this week they were 84. I guess my body needed that extra week of rest. Chemo went pretty well. My biggest complaint would be the fatigue. This could be because of the chemo itself or could be because my red blood cells went down (that is a common side effect of dropping red blood cells). I basically tried to rest when I could and did work around the house when I had energy. I am finding that I can do a lot in the morning as long as I take it easy when Kaylee is taking her nap. By the time the kids get off the bus I have more energy to deal with homework. I do go tomorrow for another round of chemo so we will see what my numbers look like.
So I know everyone is wondering why the title of this post is stuck. I think the best way to explain is just to show a picture.
photoYes that is John’s truck and it is stuck in the mud that is our back yard. I laughed so hard when I saw this. He called two of his friends who had large trucks with winches to come help him. It was a lost cause. They just couldn’t get the truck out. It was quite comical! The next day the men working on the backyard came with the heavy equipment and they ended up getting the truck out.

 

To give everyone a little background, when we bought our house, the backyard was mostly filled with the tiny trees  you see behind the truck. We decided we wanted more grass so John cut down a lot of trees. Then we had some men come in with large equipment and start spreading sand and dirt. Then came the rain. We have been dumped on all of August. It seems that every day we have a thunderstorm or a very heavy downpour that lasts several hours. While it is typical for Georgia to see rain, usually it is a small rain event that passes quickly every afternoon. This has been unusual, or so we have been told. Needless to say our backyard has turned into our own personal swamp. Here is what it looks like after it rains. It has been a long wait and we still have a mud pit in the back. As I look out back today it looks like it is finally drying out so hopefully they can start working again and we can remain dry for a while. On a positive note, we have seen several deer in our backyard. We have seen a baby deer that seems to explore on its own. The kids love it when they see it!

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This entry was posted on August 25, 2013. 4 Comments

No Chemo Today

Well today I went in to get chemo and because my numbers were too low I couldn’t get chemo. I know what you are saying. “Didn’t you just have a week off?” Yes. Last week was my chemocation. I did, however, go in last Monday to check my red blood cells and they were at 7 (normal is 12). They didn’t go down from the week before when I got chemo. The thought was that because I had that week off my numbers would rise a little. OK so my body decided that it wasn’t going to cooperate. Today my red blood cells were 6.9. Too low for chemo. Also my platelets were too low. Mine were 57 and normal would be 150. Because platelets are what clot together if you cut yourself, I have to be extremely careful! The plan is to take this week off and then try again next week. Hopefully my body can make some more red blood cells and platelets.

On to other news, I got a new wig. Because Gulfstream’s insurance doesn’t pay for wigs, I am stuck with the wig I got several years ago. While I love the one I have, I am not happy with the top of it. The top of the wig feels crunchy and I can see little pieces sticking up. The top of the wig looks like they just hot glued the hair on the lace not threading it through. While John says that you can’t see it, I can feel it. I decided to see if I could find an affordable wig online. I found one that was only $27. I love the top as it has a piece of rubber that the hair comes out of so that when I wear it, it looks like my actual scalp. So I thought I would show you guys both pictures and then take a little poll to see which one you like better. So which is it long or short?

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This entry was posted on August 13, 2013. 15 Comments

I Have Awsome News!

Yesterday I went in for chemo. This was week three in my cycle so I really wasn’t expecting to get chemo. I was surprised last week when my numbers were really unchanged and I did get chemo so I assumed that this week my numbers would drop due to two weeks of chemo. Well the only thing that really dropped were my red blood cells, however they were not really that low. I had to promise to come in next Monday so they can check my red blood cells (If this round of chemo makes them drop any more I might have to have a transfusion next week). So I was approved to receive chemo.
Ok so that was good news but I have even better news. You may want to sit down (really for two reasons- it is really good news and it may take a while to explain- but worth it in the end!)
There are two tests that have become very important in this fight. The CTC and the CMP. I will try to explain each and give you a little history and update on each.
CTC- this measures how many cancerous cells are in my blood. While this test helps my doctor keep tabs on what is going on in my body, it isn’t “The Test” to determine 100% what my cancer is doing. (That would be the scans I do every three months). The CTC for me has been a good predictor of what is going on. This test is done once a month on the first weekof treatment and I usually get the results on the third week of treatment. If you score anything less than 5 you would be considered in the normal range. I thought I would share with you what my scores have been so you can get a good picture of what has been happening.

10/1/2012- This test was done when I first moved to Savannah. I scored a 1 which is in the normal range

3/1/2013- This test was done after a scan showed that my cancer had started to grow in several new places. I scored a 196 which confirmed that this test did show when my cancer was growing. At this time I was placed on Affinitor (oral chemo) at the highest dose possible.

3/29/2013 – This test was done to check if Affinitor was working. I scored a 17 so the thought was that it was working. Shortly after this test I started have issues with a cough, and my liver enzymes started to go through the roof (more on that later) so we cut back my dose.

(5/1/2013) I did another CTC but somehow the lab messed up and they were unable to give me any results.

6/1/2013- This test was done while I was at the lowest dose possible of the Affinitor (oral chemo). I scored a 209 which meant that the lowest dose of Affinitor wasn’t going to work for me. During this time I was admitted to the hospital for my persistent cough.

6/21/2013- This test was done while I was in the hospital and I had been off the Affinitor for almost two weeks. I scored a 861. WOW!! The cancer was really growing while I was doing nothing! To put it into perspective, my doctor said they have seen patients at 3,000 but that didn’t really make me feel better!

7/27/2013- This test was done after only two treatments in June of the Abraxane. I scored a 21. That’s right, a 21. We are praising God!!! This is awesome news. Since this last test, I have had three more treatments and will get tested again at the beginning of August (won’t learn results till the end of August) and we are hopping for even better results. I will also be getting scans sometime in September to get a picture of what the cancer is doing in my bones.

OK now for the other test- CMP. This has just become important due to the damage that Affinitor did to my liver. I also get this test during week 1 of my chemo cycle and get the results on week 3.
There are two numbers they look at to check for damage to the liver. They are AST and ALT. Normal numbers for the following are:
AST- 40
ALT- 32

3/27/2013- This was the first test that showed that the Affinitor was causing damage to my liver and boy was it shocking. My numbers were:
AST- 380
ALT- 626

Over the last few months we have kept an eye on these numbers to make sure they were going back down. Since I am no longer on Affinitor the thought is that my liver can repair itself. I am happy to report that my numbers are now down.
AST- 92
ALT- 72

This means my liver is slowly fixing the damage done!! All around it was a day of good news.
Well that was a lot of numbers and I hope I didn’t confuse everyone but the only way to explain the good news was to give a little history.

On a lighter note I thought I would share a picture of you. Yesterday I had my wig fitted and the bangs cut. I am still working on the bangs. They stick out really far from my forehead and it makes it look like a wig. Because it is synthetic, you can’t use any heat on it- no curling iron, hair dryer, or steam rollers. The hair dresser suggested using those pink foam rollers and dampen the hair and leave overnight to give it a little curl under effect.

Here is a picture of the bangs. Also in the mirror you can see the back which is cut in a short bob.

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Here is what it looked like yesterday after I got home and played with it a little bit.
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This entry was posted on July 30, 2013. 5 Comments

Excited About Getting Chemo!

Yes you read that right. I was excited yesterday to get chemo. I know that sounds really odd. Well yesterday was the second week in my cycle. Last week when I got chemo all my numbers were below normal still. They went ahead with chemo anyway. I felt really good by Wednesday and was able to get a lot done the rest of the week.
Yesterday I wasn’t sure what my numbers were going to be. I felt good but that isn’t always a good indicator of what my numbers are doing. If you remember last month I didn’t get chemo my second week because of low white blood cells so I was expecting the same for this week. It seems that this chemo really hits my white blood cells, red blood cells, and my platelets hard.
We were in for a big surprise. All my numbers hadn’t changed. They were the same as last week and some of them even improved a little. My doctor and chemo nurses were all surprised! We had discussed that I might have to change my schedule to every other week if my numbers kept falling. Well yesterday we went ahead with chemo. Also last week they ran my CTC (shows how much cancer is in my blood) and my CBC (shows my liver enzymes- see how much damage my liver is still dealing with) that should be returned sometime this week. These tests will be a way to see if the chemo is working and if my liver is healing itself. I still don’t have any pain in my bones so the thought is the chemo is at least keeping what I have stable and hopefully killing the cancer. Also because my eyes are no longer really yellow (wish I had taken a picture because they looked bad!), we think my liver has started heal.

All that being said, I know God is answering prayers. I feel really blessed to have so many people praying for me.

This entry was posted on July 23, 2013. 8 Comments