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Saturday, November 12, 2011

My parents on their wedding day.  Can you believe these two people had a baby at their ages?  Gotta love my mom's 70's wedding dress.  She wanted me to wear it when I got married. 

It has been exactly 5 years today since my mother passed away. I have been thinking a lot about her, and I wish she was still here. My mom was very eccentric and fun to be around. She was working as a school teacher until she met my dad. They married and I was born when she was 43. Shorty thereafter she quit her job, moved from Salt Lake to Fillmore, and became a full time mom. I could not have asked for a better mother, and she taught me many things. I learned how to read at 3 and supposedly could read from the newspaper. She also made me write in a journal weekly until I was 18 (She picked the topics, a lot of them had to do with politics because she was an ultra conservative right wing republican) She was obsessed with geography and made me memorize the location and name of every country in the world. For a while she thought I was going to be a classical guitarist and I took classical guitar lessons for 2 years. (her dreams didn't come to reality). She signed me up for piano lessons and made sure I practiced. Other favorite memories include fun trips with neices and nephews, secret shopping trips to Provo for clothes, and family dinners. When I was about 18 she started forgetting words and names of people she had known her entire life. This gradually worsened and we found out that she had multi-infarct dementia which is similar to Alzheimer's disease. Her disease was heartbreaking for me, because I lost my mother piece by piece over a period of 10 years. She also developed breast cancer about 1 year before she died.

I thought a lot about my mother and my grandmother right after I had the biopsy. I remember driving home thinking that if they were out there somewhere, maybe they could intervene and somehow make my biopsy normal. I didn't want to go through the same thing they had been through, and maybe they could spare me this trial. I think I just wanted and still want my mother to be with me during all of this. I miss her so much!

I thought I was 2/3rds finished with my chemo until I met with my oncologist for my 4th treatment. Apparently the pathology lab got a new machine that tests for the her2 protein in July. Since then, there have been more her2 positive breast cancers than normal. Her2 testing starts with staining the tumor cells and looking at them under a microscope. Depending on how many cells stain, it is rated 0, 1+, 2+, or 3+. 0 and 1 are negative, 2 is equivocal, and 3 is positive. If the results are 2+, another test is sent called a FISH to look at the DNA. I didn't know this, but my tumor was borderline positive. Because of this and the new machine, they decided in late October to send the FISH test on my tumor and it came back negative. My oncologist wanted a second opinion so he requested that my her2 testing be repeated at another lab. The results came back yesterday. The staining was 2+ and the FISH was negative. So, I guess this means that my cancer is technically her2 negative which is a good thing. (The her2 protein makes the cancer more aggressive and more likely to spread)

The bad news is that I have been treated for a her2 positive breast cancer, and now my oncologist thinks that I should be on a different chemo regimen. I have been receiving taxotere, carboplatin, and herceptin every three weeks for 6 treatments, (I have finished 4 out of 6) then was planning on continuing herceptin every three weeks for a year. If my tumor had not been labeled as her2 positive, I would have received adriamycin and cytoxan every 2 weeks for 4 treatments, and then taxol every week for 4 treatments. Since the taxotere is similar to taxol, he is going to count that as the taxol and wants me to start adriamycin and cytoxan next week. The plan is to do 4 treatments of the adriamycin and cytoxan every 2 weeks. This is frustrating to me because If I would have initially started on this regimen I would have been finishing up the chemo and would possibly be getting my mastectomy in December. Now my mastectomy will likely be pushed back until the end of January. (I had it scheduled for January 10th). Adriamycin and cytoxan are typically harder to tolerate than the chemo I've been on, so I'm scared for that. The plan is still up in the air on what my next step is with the chemo, and I'll know more next week.

I had an ultrasound to make sure the tumor is shrinking, and the radiologist couldn't really find it. She said that if she didn't already know I had cancer, she may have read it as normal. My lymph nodes also look normal! I can still feel the tumor, but it is a lot smaller and softer.

I also met with the Radiation Oncologist Dr Avizones. She recommends that I do the chest wall radiation because it increase survival by 10%. I have decided to do it, so I won't be able to get my mastectomy and reconstruction at the same time. This is because radiation damages tissue and dramatically lengthens healing times. Instead, my plastic surgeon will place tissue expanders. I will then have 25 radiation treatments. Then I can have the DIEP reconstruction which probably won't be until May or even June. It's Depressing that this is going to take that long.

I am intermittently having anxiety, and continue to struggle with my thoughts. For example, while getting my teeth cleaned I wondered if I should even be doing it because I was going to die anyway. I have also been shopping and wondered if it was a waste buying clothes since I am going to die. In events such as birthdays, piano recitals etc, I think that maybe this is the last time I will do these activities. Then I start wondering if these thoughts are premonitions, but Paul says that the spirit doesn't speak to people with fear and anxiety, so I think it's the adversary trying to get me down and test my faith. I had a day last week where I felt negative about everything, and kept feeling that all of this was unfair. Why did I have to get breast cancer at 35 while breastfeeding? Why did my BRCA test come back positive so I have to worry about getting my ovaries removed? I feel like I am so distracted by breast cancer, that I am not even enjoying my baby's first year, or my other kids. I feel like my kids are getting cheated by having to worry about their mother all the time. I decided to let myself have that day, and then move on and try to be more positive from there.

I need to express my thanks to so many people who have been so supportive. We have had countless dinners brought to us on the weeks of my Chemo. My Friends at work have set up a housekeeper that comes every 2 weeks so I don't have to worry about cleaning when I am sick. People have dropped off treats, hats, books, and been very helpful with driving my kids around. We feel so blessed by the outpouring of support we have received. Thank you!

7 comments:

  1. Oh, Nancy this makes me want to bawl. I am so sad for what you are having to go thru but you are amazing and are doing it so well. I know a little about being cheated, Courtney was only a couple months old at the start of Lauren's cancer and I felt like I missed out on her 1st year for sure. It's no fun AND no fair, but you are going to make it thru. We all love you!

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  2. I am so so sorry Nancy for all that you are having to go through. No one should have to endure all of that. You are always in my prayers each and everyday. You are such a strong person and you will get through this. Love ya!

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  3. I like hearing about Grandma Shirley. It brings back some fun memories. Like how she'd make you wear nylons under your shorts and how she liked to get every last crumb off the counter:) I miss her giggle. She was always so proud of you. I really wish she could be here right now too.

    I can't even imagine what I'd be like to go through something like this. If anyone can handle it though, it's you. I bet being in such good shape really helps too. Hang in there Nancy. You're going to beat this!!!! My family and I would love to be able to help out somehow. Love you!

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  4. Nancy, It was so great to visit with you and Paul and your amazing kids today! You and Paul are doing such a wonderful job with your family!

    Dr Avazonis (sp?) was my radiologist also! I loved her! She really did her homework and really explained everything to me so thoroughly.....tell her I'm still alive ok? She may not remember me but may remember the case. You are in good hands! Really loved hearing about your mother! I am certain that amazing mother continues to guide you from the other side just as I am sure you would do for your children!

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  5. Wow, Nancy, I didn't know all those things about your mom. That's neat. Thanks for sharing them. She really was a good mother. I can't imagine how hard it must be to go through all of this without her. You are in our prayers! You are such a strong person. Who else could lose their mother one day, give birth the next day, and then plan the funeral while in the hospital? You are an inspiring person. But that doesn't mean you have to be strong ALL the time. :) Glad your friends are helping to take such good care of you guys during this time. Love you!

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  6. Thanks for sharing. I feel so helpless. How can I help YOU.

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  7. Nancy, I really liked your Mom. She was wonderful. It was always great to be around her and your Dad. I miss you and only want the best for you. I admire you. Thank you for inspiring me.

    Janet

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