Decisions

School has started again and we are trying to get used to our new schedules.  Sam is in all-day kindergarten (hallelujah).  Emily started 7th grade, and Jake is in 4th.  Zach and I are home by ourselves for the first half of the day, and I am enjoying the quiet.  When school gets out, the quiet ends and chaos begins!  We are very busy after school with piano, sports, scouts, and young women's.  Emily and Jacob's piano teacher moved DC, which is sad for us.  We will miss her!  They started with a new teacher at the U of U a couple of weeks ago. The practicing is going to be more intense than we are used to, so I think we are going to have to step it up a notch.  I'll post some videos of their last recital.

I had an appointment with Dr. Dodson, who is the oncology gynecologist that is going to take out my ovaries.  I had been told in the past that I needed to have them out by age 40.  But, he said that with a BRCA mutation, it is recommended to have them removed by age 35.  I kind of freaked out after hearing that because that means I am almost 2 years overdue.  Then, he explained that I need to decide between taking out my ovaries and Fallopian tubes (brca2 mutations increase the risk of Fallopian tube cancer), and having a full hysterectomy.  Apparently, it is impossible to remove all of the Fallopian tubes without having a hysterectomy because part of them are stuck inside the uterus.  The advantage of the just the ovaries and Fallopian tubes is that the surgery is in and out, and recovery is only a couple of days.  The complete hysterectomy is a longer recovery, overnight hospital stay, and has more risks.  Im still not sure what I'm going to do.  I'm leaning a little towards just the ovaries because I don't know if I can face another big surgery.  I wish someone would just tell me the right thing to do!  Either way it is scheduled for November 14th. 

On September 21st I am going to start working again.   I have been off for almost 9 months, and am pretty used to the stay at home mom lifestyle.  I am nervous, but excited to feel like I am getting back to normal.  My 1 year cancer anniversary came and went on August 19th.  I am so thankful to be around to enjoy the craziness of life with my family.  I had just barely been diagnosed when school started last year, and I remember walking my kids to school thinking that I might not ever see them have another first day of school.  I am grateful to be alive, and I am starting to let myself plan for the future!

nancy

nancy

Recovering from surgery

It has almost been six weeks since I had my reconstruction. During this time, I haven't been able to lift anything or bend over. This hasn't been the easiest because of my 18 month old baby. In spite of trying my best to follow these instructions, I have developed a complication called a seroma. It is in my abdomen and is basically a collection of fluid between my ab muscles and my skin. I have had it drained 3 times so far in the hopes that it would not come back, but it just keeps reaccumulating. On Tuesday I am going in to have a drain put back in. I was really really hoping to be fully recovered by now, but I guess it isnt in the cards. Worse case scenario, if the drain doesn't work, I may need to have surgery to remove the fluid collection. Mostly I am going crazy sitting around. I am ready to get back to running and biking.

I thought that I escaped lymphedema, but about 2 weeks after my surgery I noticed some swelling in my right arm. Since then I have been going to the lymphedema clinic and it has gotten a lot better. I hope that it will go away and will be a minor inconvenience that I deal with occasionally. Some of the ladies in the waiting room had huge swollen arms. I hope that this will never be me.

I am having hot flashes like crazy! They are terrible, especially in this weather. I hope they will get better. I have an appointment with a gynecology oncologist in August to plan for when I am going to get rid of the ovaries.

The good news is that my boobs look really good considering that I have no nipples and they are made from my ab fat. My right side is a little smaller than the left because of the tight skin from the radiation. No one would probaby notice but me. But this will be fixed a little later down the road. My belly looks way better than it did before, even with the extra fluid. I knew the surgery would be pricey, but I was shocked when the total came to about 100k! Can you believe that? Good thing it is covered by my insurance.

My kids, especially Emily, have been very helpful this summer. They have been very busy too. Emily went on a pioneer trek, and then beehive camp at Brighton. Jacob went to golf camp, and Sam did swimming lessons. Next week, Emily, Jacob, and I have tickets to Wicked. Then, on the 6th through the 10th the three older kids are going to a camp for kids whose parents have or have had cancer. It is called camp Kesem and is run by college students at different campuses throughout the US. Also, we got season passes to seven peaks and have been having lots of fun there.

I am planning on going back to work part time around the first part of September as long as this seroma cooperates. I have been very blessed to have everything work out as far as my disability, life insurance, and health insurance. I am a little scared, but I think it will be good for me to get my life back to normal.

On August 19th it will have been 1 year since my diagnosis. It has been a hard year, but I have come through stronger than I was before.  So...what does my future hold? People always ask me what my prognosis is, or did they get all of the cancer? (cancer patients hate being asked this) For now I have no evidence of disease, and have a clean bill of health. I am doing everything I can to prevent it from coming back elsewhere, and am planning on having a long and healthy life! Thanks to everyone for all the support we have we received.

Nancy

Reconstruction

My breast reconstruction surgery was on Tuesday the 19th. It took my surgeon 13 hours to remove my port a cath, take out my expanders, sew my pectoral muscles back down to my chest, remove the fat and extra skin from my belly, and make new boobs out of it. I am really sore, and have to walk around bent over so as not to stretch the incision on my abdomen. I haven't seen the final product yet, but will tomorrow when I shower. Kind of nervous. The other bad thing is that I am swollen and bruised everywhere. I am carrying around 15 pounds of water weight from all of the iv fluids. Paul has been great and has stayed with me in the hospital for the last few days. Paul's mother Suzanne has the kids, and I am super grateful for her help. If all goes well, I will be able to come home tomorrow afternoon. My dr says that complications are most likely to occur in the first 48 hours, and I am almost 48 hours out right now. Thanks to everyone for all of their support. it has almost been a year since I was diagnosed, and could not have made it without my family and friends.

nancy

What's next...

So now that I have finished radiation, I met with my oncologist to decide what is next.  My breast cancer is stimulated by estrogen, so I have to take medication for the next 5 years to suppress the estrogen in my body.  First off, 90% of estrogen is made by the ovaries and the other 10% comes from other sources such as fat. There are 2 choices: Tamoxifen (for premenopausal women) Blocks estrogen from working on breast tissue and also increases the risk for blood clots.  Arimidex(post menopausal women) blocks estrogen that is made in places other than the ovaries because the ovaries aren't making estrogen anymore. In a lot of cases chemo puts women into menopause, and I was kind of hoping this was the case for me so it would be done, and I could have my ovaries removed without anymore symptoms.  However, my ovaries must be extra hearty, and have started to work again:(. Lucky me! So a normal pre-menopausal girl would start Tamoxifen.  But.....I am anything but normal.  I got another genetic gift from my father called Factor V Leiden, and it increases my risk for blood clots.  So Tamoxifen wouldnt be that great for me to take.  My oncologist recommended that I start Lupron which suppresses ovarian function,  Arimidex for the estrogen, and Zometa which strengthens bones.  There are some studies that show this combination of drugs can decrease the chances of a breast cancer recurrence.  

My big dilemma is what to do with my ovaries.  Early menopause is associated with a lot of problems such as bone loss, weight gain, heart disease, earlier death, etc. Because the BRCA mutation causes ovarian cancer too, I have been advised to have them removed by age 40.  I feel like I have to make a choice with no good options.  1-do nothing and have a breast cancer recurrence or get ovarian cancer. 2-tamoxifen - get a blood clot 3-ovaries out with Arimidex and early menopause 4- Lupron (lots of nasty side effects) to suppress ovarian function and Arimidex.  My oncologist says that no matter what I do I will be experiencing early menopause symptoms and recommends that I get my ovaries removed.  Also, there is no good screening for ovarian cancer, and it is horrible and is rarely cured.   I have decided I will follow his advice and get it done shortly after my reconstruction.  

I found out this last week that 2 members of my mothers family have tested negative for the BRCA2 mutation.  I am so happy for them because I don't want anyone to worry about getting, or to get breast cancer.  But at the same time it makes me feel a little alone.  I have always felt a little like the odd one out, not because of the way anyone has treated me, but because of my unique family situation.  I was born to parents that were older and have both passed away.  I am my mothers only child and my closest half sibling is 15 years older than me.  My mothers family all lived in the same small town so all of my cousins were raised together except for me.  My half brothers and sister are in a different phase of life than me, and are all grandparents now.  I guess what I'm trying to say is, I don't want to be alone in this anymore.  (Im sure this sounds terribly selfish to whoever is reading this, but it is what I am feeling)  I have been thinking a lot about my mother and my grandmother and also about the other ancestors that have probably had breast or ovarian cancer, and would like to learn more about them.  I would like to figure out beyond my maternal grandmother who this came from.  I feel a strong connection to these ancestors, but especially to my grandmother.    Another interesting thing about my mothers family is that there are not very many girls.  I think this is why it has taken a long time to figure out that we carry the BRCA2 gene mutation.  Both my mother and I are only daughters.  My grandmother had sisters, but one died in a car accident at an early age,and the other one lived until her 80s or 90s,  never had breast cancer, and also did not have any children.  She probably didn't carry the gene mutation.  So, I have a family history of breast cancer, but it's nothing that really stands out, and I think it has been because of the lack of girls.  I feel very strongly about my maternal cousins getting tested.  That knowledge is the only thing that would have saved me from this nightmare.  if I would have known, I would have started screening in my 20's and could have found my cancer a lot sooner. (Normally, women start getting mammograms when they turn 50, 40 with a family history.  Unfortunately,  I didn't make it to that age without getting cancer) I have met some other people that carry this gene in their families, and it is an emotional issue.  Some people prefer not to know.  After going through this ordeal, it does not make any sense to me not to find out.  If you carry the gene, there are some options available to prevent cancer and all that goes with it.  Basically, if you have the gene, you are just waiting to get cancer.  Not knowing about it doesn't change whether you have it or not. Knowledge is power!  (Ok, I'll get off the soapbox for now:)

My reconstruction is scheduled for June 18th.  It is nice to have a date, and I am counting down the days and minutesuntil these expanders are out of me!  I hope to have a month and a half to get over the radiation without too much excitement before the big surgey.  I am also looking forward to having a flat stomach!

I have had a bit of a complex about looking like a man lately, and ask Paul daily for reassurance that I look like a woman.  I have also overheard little kids at the store asking their parents if I am a boy or girl.  An experience I had last night didn't help at all.   We were having dinner at the Cheesecake Factory and the waiter said, "excuse me sir, but what would you like to drink?".  I just sat there for a minute and wanted to say something to make him feel terrible.   I held my tongue and he realized his mistake and apologized profusely.  I wanted to stiff him on the tip, but since we were in a large group, it was already included:( 

Thanks again to everyone for all of your support.  I couldn't have made it through this without your help.  I'll write again in a few weeks with an update on how things are going with the new drugs.  Especially I'll post pictures if I start to grow a mustache from lack of estrogen.  Hahaha knock on wood!

Nancy

 

Radiation is done!

The radiation room

On the table for my last radiation treatment!

Ringing the bell!

I am not sure the significance of ringing the bell with finishing cancer treatment, but it feels really good!

My house was decorated when I came home from my last treatment.  Thanks Mary Jo! 

My hair journey

I am not very good at putting pictures on the blog, so I am making up for lost time.  Here are a few of me over the last several months.

I love this picture!  I think we took it to document how pale my skin was.  

My last day of chemo, ringing the bell Yeah!!!  Not looking so good though

No eyebrows or eyelashes, and I was feeling pretty sick.

Close up of my bald head.  

Hair is starting to come back a little bit.  I think this was taken in early March

This is crazy, but my nails thrived during chemo.    This picture was taken during my blood transfusion.  My skin is starting to look a little more pink.  

Cabo San Lucas in Early February, still bald.

Paul and I on the beach

Right after the whale watching trip

My hair today, April 22nd

  

Radiation

Radiation is like a walk in the park compared to chemo. It is more of a hassle trying to get myself to the appointment on time than anything else. The actual treatment only takes about 5 minutes, and most of it is getting my body lined up in the right spot. I now have 5 tiny tattoos which line up with lasers in the treatment room and once I am positioned, the machine does the rest. My skin is a little red, kind of like a mild sunburn, and mildly sore. But hey, the skin on my foobs (fake boobs) is numb anyway, so who cares. I have done 17 out of 25 and will officially be done on the 25th. Right after my last radiation, I have an appointment with my plastic surgeon, and will hopefully be able to schedule my reconstruction after that. They say I have to wait a minimum of 6 weeks after radiation, so that will probably be sometime in June. I know I've said this before, but I am counting down the minutes until these tissue expanders are out of me! I don't notice them very much during the day, but they bother me at night a lot and make it so I can't sleep. They look so funny, the left one is higher than the right and they are spaced about 3 inches apart. The only benefit is that I don't have to wear a bra. The nipples are gone, and my expanders aren't going anywhere, so I figure, why bother?

 I would also like to get my port removed, but it is almost on top of my expander. My plastic surgeon wants me to wait until I have my reconstruction to have it removed. He doesn't want to take the risk that my expander will become infected. So I guess I'm stuck with it for awhile. I'm supposed to be getting it flushed every month so it doesn't clot off. I let it go two months because I'm so sick of going to the dr. Luckily it was still patent when I finally made it in.

 After consulting with 2 additional oncologists, I have decided not to do a year of herceptin. They both agree that I am officially Her-2 negative, and that there wouldn't be any benefit. I am still very frustrated about the pathology lab mistake. There were a few other women that were involved, but my surgeon told me that I was affected the most because I was the farthest into my chemo. Lucky me! Most of all, I have lost a lot of trust in the medical profession. I feel like I am always questioning everything now, and am more anxious.

The next thing I have to look forward to is starting Tamoxifen which blocks estrogen. I have finally stopped having hot flashes every 5 minutes from the chemo. Some of the side effects of Tamoxifen include hot flashes and weight gain, so I'm sure they'll start up again. (the joys of menopause) I'm already 10 pounds fatter than when I started this fiasco. It's bad enough to have cancer, and now my pants don't fit. But......in a few months I'm going to have a flat belly! Just the thought of losing my muffin top puts a big smile on my face. And, if my foobs aren't big enough when my reconstruction is done, I can get fat sucked out of another place and injected into my boobs.

 I have had about a month now where I am feeling really good both emotionally and physically. I am very positive and actually have days that I don't think much about cancer at all. I never thought I would say that. Spring is here and it feels like a new beginning for me. I have about an inch of fuzzy hair on my head and I am not a pale green color anymore. I have given up the hats and scarves and my hair is long enough that I dont look like I have cancer. I am keeping very busy with my kids right now, and it feels like I am getting back to normal:)

Tissue expanders - Boo

The tissue expanders SUCK! I start to feel like I will survive, and then I get them inflated. This happens every Wednesday, and tomorrow should be my last 60 mls and then I will finally be at the max. Hallelujah! I was joking that I always wanted breasts that were more firm, and in a higher position, but this is not the way to go about it for sure. Next week I should be good to go with starting radiation. I was supposed to meet with my radiation oncologist last Thursday, but got the appointment day wrong and missed it. I have so many appointments, I can't keep up with them all. So now it will be Friday. This week is also busy because we are still trying to decided if I need herceptin. My oncologist suggested that I meet with some other oncologist to get their recommendations. So, tomorrow I have an appointment with Dr. Beck and then on Thursday with Dr. Buys. I'm pretty sure they're going to say no herceptin and in that case, I will feel good about not doing it. I also want to talk with dr buys about when to get my ovaries removed since she is the BRCA expert. My pathology showed that the tumor was 100% gone in my breast, but I had 2 microscopic bits of cancer in 2 lymph nodes. So not perfect, but still good because I already knew I had 2 positive nodes from the get go, and they were very positive instead of just having microscopic areas with cancer. Still having good and bad days, and am tired of thinking about cancer! I wish there was a surgery that could remove it from my brain. I have always heard people talk about survivorship, but now I realize how hard it is to move into that mode. I feel sometimes like I will never be the same because I am so preoccupied with it. I would give anything right now to not think of it for 24 hours. It helps to keep myself busy, so that is what I am doing. We are getting back into somewhat of a routine after the surgery. I took Zachy to get his first haircut today, Sam also got his done. Emily and Sam will be starting soccer again and Jake is doing spring football. Emily and Jake are still doing piano lessons, so we have a lot to keep me busy. During the day while the kids are in school I usually walk or ride my bike. I am hoping with the OK of my plastic surgeon, I can start running again this week! I am also good at inventing little errands to run, like trips to Ikea, or taking Sam to hires for ice cream and a caffeine free diet coke with lime for me. I would love to start working again, but now I have to start radiation and do my reconstruction. So hopefully in June I will be able to get back to my normal life and start working again. Ps. No lymphedema yet, so I'm keeping my fingers crossed!

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.