Saturday, January 10, 2009

It's Not Fair

Time to update, I had my 1st round of the Herceptin only on Wednesday and so far no real known side effects. Here I thought that I would be in and out of there faster than I was, but with my oncologist being gone last week he was very busy seeing double the patients and he got behind, which made my infusion get behind. So I started at 9:30 and did not get out of there until 1:30. The good news is that my next infusion should only last 1 hour total by the time I get checked in and out because I don't have any lab work or an appointment with the doctor. I'm definitely looking forward to that. It is not my favorite thing to do with my free time is to wait around at the cancer center.

My oncologist was very happy with my scan and that everything was still cancer free. I asked him if I was considered to be NED (no evidence of disease)and officially I'm considered NED, which I have been since my scan that I had in October, but I wanted to hear it from the doc. In regards to the inflammation that was seen on the scan he thinks is related to the chemo and if I have any digestive issues that I think are abnormal to let him know and they will perform a test that puts a scope down into my stomach to investigate, not sure what the technical name for it is called sorry to all you medical people. I'm bad with terminology.

I had my bloodwork done and my hemoglobin is still low at 10.8, but rising. There were tears brought to my eyes when I saw my alkaline phosphatase result. Your alkaline phosphatase(ALP) is an enzyme that is in your blood and if it is high it is usually related to a liver or bone disorder. It has been indicated that this test is the most sensitive test to indicate metastatic tumor(s) to the liver. When I first had my blood drawn back in August, my ALP was 219. The normal range for this is 50-136. On Wednesday my ALP was 75, the lowest it has ever been. I was so excited that I couldn't wait to share with everyone. Of course my tumor marker test was much higher and drop tremendously, but the ALP concerned me a lot since it was the test directly related to your liver, that I dwelled on it in the beginning although I have read on some of the discussions boards for some women of it being much higher then my has ever been.

In regards to discussion boards, I have listed on the site a couple of websites that I visit frequently for support. The Young Survival Coalition is one that I visit often and I feel like I know some of these girls without even meeting them face to face. This website has really helped me keep positive and stay strong besides all you of course who read this and leave me comments. There are a number of girls who are stage IV and they have given me alot of HOPE. But at the same time I feel for the ones that their treatments are not working and they struggle and at times some of them pass away leaving behind their children, husbands and other family. It's not fair that young women who may be mothers or wives have to go through this. It's not fair that children have to grow up without their moms. It's not fair that husbands have to be widowed way too young. With all of this said I want everyone to visit this site http://www.caringbridge.org/visit/amytaylor and know that life is way too short and we need to cherish it everyday and thank God that he has given us one more day to spend with our families. Even though I have never met Amy, her story has touched me and she has been taken way too soon from her family and they have been robbed by this horrible disease, but I know someday, SOMEDAY no more families will have to face what her family has faced. I feel fortunate that my treatment has responded so well, but there is that 1% that I fear could this be my family someday. Thanks for letting me vent, I don't express my feelings too much, but felt that I needed to share with everyone what my thoughts have been lately.

On a much happier note to celebrate Bryan's birthday we all went out to eat and bowling tonight and it was FUN by all! I included a couple of pictures to share.

Brock watching his ball go down the lane with the help of dad


In picture is our niece Paige, Bryan, brother-in-law Brad, and nephew Noah

8 comments:

Anonymous said...

Good Morning sweet Nicole,
After reading your last blog I did visit Amy's blog and immediately welled up with tears as I drank my coffee. What a beautiful family and Amy a beautiful woman. I feel your sadness seeing Warren and children lose their wife and mother. Thanks for sharing this with me. I love you. I'm so glad you had a great time celebrating Bryan birthday. HAPPY BIRTHDAY really late!! Looks like a ton of fun bowling also, Brock investigating the roll of the ball. On another note, WIPPEE!!!! For NED AND NORMAL PETSCANS, NORMAL BLOOD TESTS (except one that is on the rise, in this case a rise is good!). You plow on beating this monster trying to disrupt your life!!! The lessons learned and the awakening of appreciating life even more have been and are overwhelming the past 5 months as I watch you battle this disease head on and with such determination. I pray for NED to infinity!!! Love the Brock & Kitty photo.
Sandy

Aunt Brenda said...

Dearest Nicole,
Amazing!!! What wonderful news. With prayers galore, your positive attitude, and miracle medicine, we are all truly blessed to read that your tests came back normal. You are an inspiration to many others. Stay strong. We love you.
Love,
Aunt Brenda

Stacie said...

Nicole,
You made me cry reading the last part of your post because I follow those sad stories also. I really cry though knowing you fear this being you and you're family. You are doing sooooo miraculously well and I don't think you should dwell too long on this fear. Maybe way, way, way, down the road (God forbid) you can revisit it but for now lets celebrate NED! Not too many Stage 4 ladies get a visit by NED so you must be very special! I pray he stays with you for years and years to come!

But I do totally agree with the "it's not fair" statement and believe we used this phrase quite frequently in August and September too;) Personally-on this side of Heaven, I will never understand.

We had so much fun last night bowling. Next time we need to do the moonlight bowl right off the bat! It was a fun place and their hershey bars tasted like chocolate(ha!ha!).

We love you!!!!
Stacie

Anonymous said...

Nicole and Family Thank you so much for sharing all your great news!I wish we were close enough to help you celebrate.All we can say for now is, Thank you dear lord for listening to all our prayers and thank you lord for giving Nicole and her family a new lease on life it's self.God Bless you. C&D Griffin

Aunt Brenda said...

Dearest Nicole,
I spent quite a bit of time on Amy
Taylor's website. It was very touching and inspirational. Thanks for sharing. You are a strong woman and are doing such an amazing job in your treatment. Stay strong as we continue to pray for you.
Love ya,
Aunt Brenda

Bev said...

Fantastic news, Nicole!!
Praise God!
I admire your spirit and fight!
May 2009 hold only good things for you and your family.
Bev

Anonymous said...

Nicole, this is wonderful news. God truly has listened to our prayers. We had so much fun bowling and watching the little ones bowl. Now we'll keep praying that you stay in the NED mode. Love you Mom & John

Anonymous said...

Nicole, we have continued to keep you and your family in our prayers. I had not visited your blog site recently, so was so very happy to read all that has been added to it in the last couple months!!! How sweet our Jesus is to be seeing you through all you are over coming!

I hope you continue to feel good, and was so pleased to read about your Employee of the Year Award which you received at work!! Thanks Stacie for telling us, so we can rejoice. That was such a great honor, and well earned from all I have read. You will have to tell us all about your Valentine's Trip. That is the neatest thing they could have done. Sent you on a trip to just relax and enjoy!

I'll try to check back sooner next time, but always know your Grandma will alert us to anything out of the ordinary we should be aware of!

Those boys are the cutest. Thanks for sharing the pictures.

Sue & Ron(your mom's cousin)