Genetic Testing and 2nd Opinion

Genetic Testing

I got my genetic testing results back. I am one of the lucky 2% that come back with a defective gene that they can't tell if it is poss. or neg! How fun. So my family is willing to get tested and see if any of them carry it. This will help determine if it is indeed genetic or not but it is mostly for research as they have never seen this variation before!!! CRAZY!!! So no real results except that I think a double mastectomy is in my future. We will see what the doctors have to say about the ovaries.

2nd Opinion

What a great day it was at Dana Farber. That place is amazing and the people are so kind and wonderful to work with. We saw the oncologist Dr. Karen Anderson (one of the top docs in her field) first. She was so good at explaining things in terms that we can understand. She did her exam and then came back to explain what she sees and what treatment options I have. She said that the type of chemo I am getting right now is exactly what I would get from her. So we are on the right path attacking this from the inside. She also said that since the tumor has already shrunk some my body and cancer is responding very well to the chemo to kill it!! She said that this usually shows less of a chance of recurrence!! It isn’t guarrenteed but it is a good sign!

After I finish all the chemo treatments I will be having surgery of some type and then will be looking at 7wks of radiation. This will consist of 5 days a week for 7 weeks. The treatment is short (1/2hr) and hopefully we can do that in Enfield so I don’t have to go to Hartford EVERY DAY!!! Radiation is a given no matter what the surgery is that I have. Once all of these treatments are complete I will be put on Tamoxifen for 5yrs to keep the estrogen levels down to lower the risk for a recurrence. This is also the standard treatment.

Next we saw Dr. Susan Troyan the surgeon. She also did an exam and then came back to discuss my surgical options. This was the main reason for the 2nd opinion. This was also the scariest part of this whole thing for me.

Dr. Troyan said that given that my tumor has shrunk already from the chemo and seemed to be mobile that I would be a good candidate for a lumpectomy. She did say that there are some calcifications on that side that could be absolutely nothing or they could be cancerous. They won’t be able to tell until they get in there and get pathology reports on those calcifications though.


Option 1: Lumpectomy and wait for path to tell us about the calcifications. If there are unclear borders of the tumor then I would need a 2nd surgery to go in and try to clean up the borders (take more out). This would be a day surgery and I would need 2wks recovery at home.


Option 2: Mastectomy. This would eliminate a 2nd surgery for the calcifications if there was a problem. With this surgery they would/could put in a skin expander for the reconstruction. I would be in the hospital for 2-3 days and then would recover at home for 3-4 wks.


Option 3: Double Mastectomy. Due to the unknown results of the genetic testing this may be an option to avoid a second or recurrent cancer. One thing I found out is that if I do decide on a double I would not have to have it done at the same time. I could do the one side and then when the radiation is done and 6 months has gone by after the end of radiation then they would do the 2nd side with reconstruction of both sides. This is a consideration given the unknown genetic test results.


Ovaries: We may want to keep these as long as possible!! If I have a recurrence or feel that, again due to the unknown genetic test results, I want them out to lower the risk of ovarian cancer, I can have that done at a later time closer to menopause.


One thing I have realized through this is that this will be a fight I will be dealing with for the rest of my life. Once the cancer is gone it doesn’t mean that I am done with it and never have to worry about it again. When you are diagnosed you know it will be a lifetime battle but it really doesn’t sink in until you are looking at decisions that don’t have to be made for years and years to come!

So as you can see we had a lot of information given to us but it was an incredible day. I feel more at ease given all these different options and knowing that we can do things slowly and not all at once.

I am also so thankful that God held the snow off for our trip and that Cheryl L. could come with us! She had some great questions and really helped us remember all the questions we had and get all the information we did.


The next step with be to talk with my surgeon and see what he has to say about all the options and what he thinks is the best thing to do.


For right now I am headed to my LAST A/C chemo next thurs!!!! That will put me at the ½ way mark in my chemo and the next half will be more tiring but I won’t be nauseous like I have been on the A/C!!! I am actually excited to get that treatment done! Almost half way there and the tumor is already smaller!!! PRAISE THE LORD!!!!

New Hair

I had a great morning with my sister in law Suza!! We went to the mall and checked out the wig shop. The guy was a bit hard to understand, but was so helpful and kind!!! The first one that I picked out ended up being the one I got!!! He showed me how to style it and fix it any way I want. It is soft and so easy to play with. Of course Bob showed the pictures to the kids on the phone and they said I looked like Harry Potter!! Nice huh!!!

Then we hit target and enjoyed a great lunch of soup, salad, and breadsticks!! Oh so yummy!!! Then off to old navy and I found nada but Suza got a jean skirt for under $5!!!

Once home EVERYONE had to try on the wig!! It was quite funny!! So without further ado here are the pictures!

Robbie!


Elijah!


 Abby!


 Even Bob had to try it on!!


 Now for the real owner!!


I really really like it!! This picture doesn't show the highlights but it is perfect!!!

What a great day, now for a nap!!!

Treatment 3 Down!

Well I had my 3rd treatment yesterday. After the next one I will be 1/2 way done!!!
I am VERY tired this time around and feel a little nauseous. Just trying to sleep when I can. And rest and drink!

There was good news from yesterday's appointment!! The tumor has shrunk and the lymph node that the dr use to be able to feel she couldn't feel and she tried really hard to find it!!!! PRAISE THE LORD!!!!

Next week we get the results of the genetic testing and then the 2nd opinion. Both of these will help with the decision on what I will need for surgery. I am very anxious and nervous about both of the these appts. I don't want to take it all if I don't have to but I don't want to get this back either. Please just pray for wisdom with the doctors and myself to make the decision that will be right for me.

Another prayer request is no more snow!!! Seriously my kids NEED to go to school before they drive me and each other crazy!!! They are doing as well as kids can stuck inside can but going a bit stir crazy!!!

Family Time

I had the best day ever today!!! My mom, sister, brother in law and nephew all came down and spent the day with us. We celebrated Christmas, ate pizza and homemade chocolate cake with homemade peanut butter frosting and laughed a lot!! This is the first time I have been able to see them since I was diagnosed. The kids were counting down the minutes until they got here and Abby cried when they had to go home.

Denise(my sister) and my mom decided to let me "borrow" their hair. I don't think we have ever laughed so hard!!! Even now we just start cracking up thinking about my "hair"!!! Be prepared as you view the pictures below. You will laugh your butt off!!!! We could barely control ourselves when we were taking the pictures!!

My Mommy!

My Seester!

My Nephew Tyler!

Eli loving his chocolate from Grammie!

Denise and Joey tormenting Ezra!

Auntie playing dolls with Abby.

The boys playing Aggravation
 

Uncle and Eli playing trucks!

Are you really ready to see these pictures??? Are you sure??!!! Be ready to laugh!!!







LOVE the "comb over"!!!





Did I mention how much I love them!!!

This one makes me look like a hippy!!! LOL

As you can see we had an a amazing day and I am so glad they came down to visit. I love you all so very much!!! God has blessed me with great family!!!

Jan 11, 2010

The past few days have been really rough. My hair is falling out fast and furiously. It itches and hurts at the same time. I thought cutting it super short would make it easier, but it really hasn't. I scratch my head and get a handful. I am not doing well with that. I am ready to have it shaved off just so that it is gone. Who knew I would be so "attached" to my hair!!! LOL I have to laugh when I can.

We have an appointment for a second opinion in Boston on Jan 26th. We are going to Dana Farber. At that point we will have the results of the genetic testing and will be able to assess what will be needed to be done for surgery. This is what I really want the second opinion for. I don't want to do more than we have to, but I want to do everything we NEED to.

I think that it is starting to really sink in and is hitting me hard again. Starting to look like a cancer patient makes it so much more real. I am told daily how beautiful I am and it isn't how I look that upsets me. I think it is just part of accepting it and fighting it. I am finding that each step has it's own grieving process.

I am so thankful to all of my wonderful friends and family that have helped me in so so many ways. God has blessed me with each of you and without you this would be so much harder. I love you all!!!

Round 2 complete

I saw my dr. yesterday and that went very well. My white blood cells were up so I was able to have treatment no problem. She also did an exam and said that it is less red and that it hasn't gotten any bigger!!! She couldn't tell if it is smaller though because I was so swollen the last time she examined me. But the key is it isn't any bigger!!!!

I am now half way through the first set of treatments!! 2 more A/C treatments and then 4 Taxol treatments to go. I was very very nauseous last night. We are altering the meds and steroids due to the reaction I have from the steroids. After taking the meds last night I did much better. I am doing ok today too. If I lay low and don't do much I am pretty much nausea free! If I move too much though I start to feel nauseous. I hope I do ok for the trip to Hartford for my booster shot.
Speaking of the booster shot, I was approved to have the shot given at home!!!! It was too late for this time but the next 2 times will be at home!!! Now I wonder if I know any nurses that would be able to come and give me a shot!! LOL :)
Erin and Ann are here today and they are working like crazy!!! My house smells so good!!!! It is so refreshing to look around and see such clean!!! My kids did a great job today too. Robbie took out the trash this morning, Abby swept the dining room and Elijah fed the cats!! They did a great job with their chores and I am so proud of them!!! They are doing really good at keeping their toys picked up in the living room too. We are still working on putting them where they belong in the bedrooms. But it is progress!!

Katie and Alyssa came and stayed with the kids while Cheryl brought me to Hartford to for my shot that next time I can get at home!!! Thank you ladies for your help!

On a bad note, Elijah is sick. Around 6pm he started throwing up. We were hoping it was a fluke but then he threw up again. :( The worst part is that I can't even cuddle him because of the sickies. 1 day post Chemo is NOT the time to be getting sick. If I get sick and start throwing up they will admit me at the hospital. Not good. So to top it off Eli is sick and we were suppose to have my family here tomorrow. It makes me really sad that I can't see them tomorrow. I was so looking forward to seeing them. I miss them. :(
Everything happens for a reason, doesn't mean I have to like it!!

Clean Sweep

This week started with a check up at the center. They did another blood culture to make sure that the antibiotics are working and they checked my white blood cell count. My count is actually up so that is really good for Thursday's treatment. I won't know the results of the culture until Thurs. I also had a CT scan of my head. I have been having some mild headaches and they wanted to make sure everything was ok. That came back clear so I am good!

Today was CLEAN SWEEP!!! I can't thank Ann, Cheryl, Katie, and Alyssa enough!!! We got so much work done and my house looks great!!!! It is such a relief to look around my house and not see a disaster. I won't feel so bad laying down because my house looks good!!! Thank you, thank you, thank you, thank you, thank you!!!!

Now to get some knitting done and relax!

January 2011

Happy New Year!!

Tomorrow is another week of appointments and treatment. Monday I go for a check up from being sick last week. I am feeling better, except for the thrush. I keep getting headaches too.

Tuesday some wonderful women will be coming to help me organize my house before treatment!! We have already done the kitchen(still some stuff to pack up) and our bedroom so we have the dining room and the kids' rooms and maybe the hall closet and bathroom left. One thing at a time and we will have this house in order so I can relax and not worry about clutter! I can't wait!! Until it is done I will just relax in my wonderfully clean bedroom!!! :)

Thurs is my next round of chemo and then the shot on Friday. From reading my BC board I have found that we all get that knot in our stomach as another treatment approaches. We know that is what we have to do but really don't like the "taste" of medicine!!

I am looking forward to next Sat though. I will feel icky and be tired but my Mom, sister, brother in law, nephew, 2 aunts, uncle and cousin will all be here!!!! I love them all so much and can't wait to see them. It will be a good distraction!!

Thank you all for your sweet comments on my hair. It was great to get ready for Church this morning in 5 min!! It is amazing how much time hair can take!! LOL

Here are some pics we took with the kids!