Surgery

I had my mastectomy on Thursday and everything went well. It is so nice to know that the cancer is out of me! I am waiting for the pathology report which will be back on Monday to make sure that all of the margins were clear, and I will also find out howtwill the chemotherapy worked. I am very sore, especially in my right shoulder where the lymph nodes were removed. It also hurts to breathe, I think that this is from the tissue expanders that were placed under my pectoralis muscle. I also have 4 drains in place, these don't hurt, but I have to drain them and record the drainage every 8 hours. Today I get to take off my "surgical bra" and dressings and shower. I haven't seen what I have been left with after the surgery, so I am a little nervous. I think we will do the "unveiling" after Paul gets home from church this afternoon. The plastic surgeon wasn't able to put very much saline into the tissue expanders ( think inflatable implants) because apparently the skin on my breasts is very thin. In the next week I will have my drains removed. In about 2 weeks, my plastic surgeon will start to inject more saline into the tissue expanders. Once they are inflated, I will start radiation. This should be in about 4-6 weeks from now. After the 5 weeks of radiation are finished, then I will have my final reconstruction. The mastectomy has been more painful than I expected, so I am not looking forward to the reconstruction. Paul and I have been overwhelmed with all of the support we have received. We feel very loved. Suzanne has been taking care of the kids and me for the last several days. Zach has been wanting me to hold him, and can't understand why I won't. I'm not supposed to lift anything over 10 pounds for a few weeks. Yesterday, she took Zach and Sam to Fillmore for maybe a week until I am able to take care of Zach again. I am hoping that I will start to feel a lot better soon. Thanks again to everyone for their support. Nancy

Vacation from cancer

Paul and I have been in Cabo San Lucas relaxing since last Wednesday. We decided to take a break before my surgery next Thursday. It has been nice to have no drs appointments or tests. Also, I am feeling really good, I ended up getting the blood transfusion and I think that helped. We have played tennis twice and I actually ran a mile yesterday and did OK. I am not pushing myself with running because after the mastectomy I won't be able to run anyway for a while. We went whale watching and saw some grey and humpback whales up close. Other than that, we have sat at the beach and by the pool, and have done a lot of reading. I love Jane Austin and have been reading Sense and Sensibility. I wish I could stay here for longer because I know when I get back I'm going to have to face the reality of my upcoming surgery next Thursdsay the 9th. I know I have to do it, and have been looking forward to getting it done, but when it comes right down to it, I am scared. I do not want to have my breasts cut off. I am also worried what will be found during the surgery, like how big the tumor actually is, and how many lymph nodes are involved. Paul keeps reassuring me that everything is going to be okay, and I am trying to focus on that. We are fasting today for strength, and that everything with the surgery will go well. I spoke in church last Sunday, the topic was choose you this day. I decided to talk about choosing how to react to, and staying strong and faithful during trials. Preparing for this talk helped me to remember what is most important in my life, my family, and my faith. A girl came up to me in the lobby of the hotel, she noticed that I was goig through cancer, and had gone through the same exact thing as me 1 year ago. She said how she turned to Jesus for help and was helped by prayer during her darkest times. Such good advice! A scripture I came across the other day talked about how god works by light rather than darkness. So true! I will update my blog after the surgery to let everyone know how it went.

I finished chemo!

I had my last round of chemotherapy on January 3rd. Even though I'm almost 2 weeks out, I'm still not feeling that great. I am soooo tired, and wanting to be through with cancer. I look in the mirror and am shocked by what I see. My skin is a yellowish pale green color, I am completely bald with no eyebrows or eyelashes. There are dark circles around my eyes and bags under them. I have also started having hot flashes at night (chemo induced menopause). I am super anemic, my last Hct was 23%, and that was before the last chemo, so it is lower now. It is causing me to have shortness of breath, and even doing simple things like going up the stairs wear me out. I have stopped running, but am still getting out for walks with my neighbor and friend Heidi a couple times a week. Tomorrow I am going in to have my Hct checked and will likely get a blood transfusion. I was hoping to make it through this without, but I don't think I am going to make it, especially with my mastectomy surgery coming up on February 9th.

 I am happy to have a date finally to get my mastectomy. I never felt really good about the surgeon I had been initially referred to, so I decided to change. I don't think he does a lot of mastectomy's, and I was unhappy with the way his office told me about my positive BRCA results. (It was one of my first days back at work and I got a message from the medical assistant telling me that she had my results back and she was going to lunch, but I could call her back after lunch, or I might want to call my oncologist and talk with him about them). Of course I knew that the result was positive after that message! I ended up finding a room where I could be alone, calling Paul, crying, and trying to finish the day like everything was normal) Anyway, I decided to go with Theresa Reading, and have a better feeling about her. The plan is to have a bilateral mastectomy with the full axillary lymph node dissection. Dr. Ferguson (plastic surgeon) will then place tissue expanders at the time of the mastectomy. 4-6 weeks later, I start 5 weeks of radiation. After the radiation, it will take a few weeks for my skin to heal, and then Dr. ferguson will complete my reconstruction.

 I had to stop working mid December, which has been really hard for me. I have so many good friends at work, and I love my job! At first, work was a nice distraction, but then it became an added stress and I was getting so tired by the end of the day that I could barely keep my eyes open. Also, I was not recovering in between the chemotherapy rounds. Because of having the baby last December, and also taking some time off around the time of both Paul's and my father's deaths in the spring, I had very little paid time off. I only qualified for 6 weeks off work. It is not enough time to do everything I need to do and to heal. I also feel like I need to be around more for my children, since they are going through this too and need their mother. Luckily, I purchased short and long term disability insurance, so I will at least get some pay during this. My co-workers and supervisor have been extremely supportive during this, and I am taking a leap of faith that my job will be there for me when I am ready to come back.

 The holidays were hard, but fun at the same time. The chemo made it difficult to do a lot of the things I wanted to do, but a highlight was going to the Mormon Tabernacle Christmas Concert. Paul's grandma gave us her front row tickets and I invited 3 friends. We had a great time! I ended up having chemo on Zachys first birthday, so I missed his first birthday party. My brother and sister in law John and Tracy had a party for him and sent me the video. I am happy to say goodbye to 2011, our family had a rough year, but I am planning on 2012 being much better!

 Emotionally I am still having good and bad days. I feel worse emotionally when I am physically sick. Now that the chemo is finished I am ready to start feeling better. This is not happening as quickly as I would like and it is easy for me to start feeling down. I am trying to be more patient with myself as it will likely take months before I start to feel like myself again. Paul's mother gave me some good advice that I am trying to follow. I am listening to uplifting music, especially my favorite Mormon Tabernacle Choir cd, 'Consider The Lilies'. The Internet can be very informative,but also scary, so I am trying to avoid reading anything related to cancer. She also suggested I read my mothers journal to help me feel close to her. I have had Paul give me many blessings of comfort, and pray daily for peace and for Heavenly Father to take away my fear and anguish. I am not going through this alone and He knows my feelings and struggles. Even though this has been a terrible trial, He has sent me little tender mercies through friends, family, and my children to encourage me. I am trying to put my trust in Him that I will be healed and will be able to raise my children and live a long and happy life.

New chemo

I started my new chemo drugs, Adriamycin and Cytoxan, last Tuesday.  My case was discussed at tumor boards, and it was agreed that it would be best for me to switch regimens.  I have been pretty sick this last week with nausea that is worse than in the past.  Adriamycin is nicknamed the red devil (it is red) and I am learning that the nickname is justified.  It is a very scary drug that has a long list of side effects including cardiac toxicity.  I had an echocardiogram before starting the chemotherapy because herceptin (which I was on before the her2 drama) can also cause cardiac problems.  Last Wednesday I had a follow-up echocardiogram and there were some abnormalities.  Since I had it done on Wednesday at 4:30 right before the holiday weekend, I haven't been able to discuss it with my oncologist.  I have been worried about it all weekend, and am hoping that everything will be OK.  I am also getting quite anemic.  My hematocrit started at 45% and is down to 29%.  I have lost 1/3rd of my blood volume which, according to my oncologist, is what is making it so hard for me to run.  I was just starting to get faster this summer after having the baby last December, and now can barely run 10 minute miles.  I have to stop and walk frequently.  

Suzanne, Paul's mother, took the kids to Fillmore on Tuesday night for Thanksgiving.  We thought about driving to be with them for Thanksgiving dinner, but I wasn't feeling well.  It made me feel really down to not spend the holiday with them.  Some neighbors brought Paul and I leftovers from their dinner, but I was too sick to even try anything until the next day.  

I am feeling a lot better, and today is the first day since the chemo that I haven't taken anti-nausea medication.  We picked the kids up and I am hoping that I will be back to normal tomorrow.  I am trying to stay positive, and in the spirit of Thanksgiving, here are the things I am thankful for.  

1- My children.  I am lucky that I was able to have my children before breast cancer because chemotherapy induces menopause and infertility.

2- My supportive husband who constantly listens to my anxieties and is always so positive and strong.

3- Paul's mother Suzanne who has helped me so much with my kids.

4- My friends who help me to stay positive and keep me pre-occupied.  (Thanks Jamie for the shellac nails)

5- My religion.  I am trying to let go of the things I can't control and put my trust in God.  I have faith that He will guide and support me and everything will be OK. 

The haircut

 Mohawk

 Fixing the mohawk

 Final product

 Shaggy (aka Jacob) doing his schoolwork

 Emily (left) and friend Ivey as flappers

 Dr. Evil, Austin Powers, Shaggy, shark, and monkey.

 Shark (Sam)

 Austin Powers looking for Dr. Evil

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!

My bald head!