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Sunday, September 6, 2015

Unexpected drama

My life has been going along very smoothly for the most part since I have last posted.  Paul's business has been doing well, and I have been trying to keep up with the kids.   I have had a few breast cancer recurrence scares with a breast lump that my oncologist felt during an exam that turned out to be a cyst, and shoulder pain which ended up being a rotator cuff injury.  In the beginning of June I started having right sided chest pain that would come and go and a feeling of fullness in my chest.  I was still able to work out and wasn't that bothered by it.  I even did a hundred mile bike ride without problems.  In the back of my mind I was concerned that it could be pain from metastatic breast cancer (breast cancer that has spread).  But I have learned that I can't get upset about every little ache and pain I have or I will drive myself crazy!  I went to Philadelphia June 17th -20th to a conference for people with BRCA mutations like myself and was having the pain there off and on too.  On June 22nd, which is my mothers birthday, I decided to ride up Emigration Canyon after work  with my 12 year old Jacob.  About half-way up the canyon I started getting what felt like a really terrible side ache.  I told Jake to go ahead and I would meet him at the top.  The pain started getting worse and I started having a lot of shortness of breath.  I wanted to stop but felt like I had to get to the top because Jake would be there waiting, and also in my mind, I thought that it was just a terrible side ache and would go away as soon as I started going down the canyon.  I finally made it and we started down the canyon.  About half way down the pain was increasing and I started to get scared so I called Paul to see if he could come and get me.  He was in Murray and started driving towards the canyon, so we coasted down the canyon.  After arriving home we went to the ER and driving there I was pretty sure that I was going to have a metastatic pleural effusion from breast cancer metastasis to my lung.  It turned out after a chest x-ray, I had a pneumothorax, which is a hole in the lung that leaks air out into the chest cavity.  It is also called a collapsed lung.  By that time I was a little more comfortable and wasn't having too much trouble breathing so instead of draining the air, the Dr started my on Oxygen and sent me home with instructions to see a pulmonologist the next day.  I spent a week on Oxygen and slowly my lung healed and the air outside my lung absorbed.  I had a CT of my chest and everything looked great.  A week later I was given clearance to go back to my usual activities so I went out running and felt great!  I went again the next day and about 1 1/2 miles into my run I started having the same chest pain and shortness of breath.  I called a friend to come pick me up and take me to the hospital and sure enough the pneumothorax was back.  Because it had happened a second time I needed to have surgery to repair the hole in my lung.  I was sent to IMC admitted and scheduled for surgery the next day (July 8th).  I had the top part of my right lung removed and a procedure called a pleurodesis which basically scars the lung to the chest wall so it can't collapse.  The surgeon was concerned that the hole in my lung was caused from breast cancer metastasis, but the pathology showed no cancer.  It turned out the my lung was fried from the radiation that I had 3 years earlier to treat my breast cancer.  This is an extremely rare complication from radiation for breast cancer.  I spent nearly a week in the hospital and had to have a chest tube which was quite painful.   On the day I left the hospital I noticed some pain with swallowing, it has persisted and after a lot of testing, we think that it is from the staples that were used to seal my lung.  They are lying right next to my esophagus and airway.  I am almost 2 months out from the surgery and still having a lot of pain, irritation, and difficulty swallowing.  My original surgeon pretty much told me I was crazy and there was nothing wrong with me and I needed to see a counselor.  He said that the difficulty swallowing had nothing to do with my surgery or pneumothorax and would probably have happened anyway????  He stopped returning my phone calls which made me feel very panicked.  I have switched surgeons since.  Emotionally it has really set me back.  I think I have a lot of PTSD from my original cancer diagnosis and a lot of my anxiety has returned.  Because of all the stress I started waking up at night with panic attacks, and crying a lot during the day.  I had a lot of plans for the summer to do fun activities with the kids but haven't felt like doing much at all.  I had a few weeks when I didn't feel like even getting out of bed, and didn't get up very much.  I ended up finally seeing a counselor and I started an antidepressant/anti-anxiety medication which has helped.   I am afraid that I will have this pain and difficulty swallowing forever.  I am trying a course of steroids now to see if it will help with the irritation, but I haven't had any improvement yet.  I am back to work and just try to keep myself distracted which helps but I really haven't had any improvement.  I have some more appointments this week so hopefully we will come up with a plan for me to get better.   I wish I had a better update.....another 3 months of my life that cancer has ruined.

Sunday, November 3, 2013

Life after cancer

Things have been going really well for my family and I recently.  We went on a family trip to Spain in April and May, which was amazing.  I ran 2 half marathons and a triathalon over the summer, and have also done a lot of road biking.  I have been back to work for a little over a year, and am liking that.  Because things are going so well, I am a little nervous that something bad is going to happen.  For the last 3 weeks I have had pain in my lower right back.  I let it go, thinking that it would go away, but after 2 weeks of worrying and angst, I decided to go in.  My new primary care Dr. reassured me that it was probably just a muscle strain, or bulging disc, but with my history she recommended getting an xray just to make sure the pain wasn't from breast cancer metastasis to my spine or ribs.  The xray came back normal, which is reassuring, but I am still having the back pain:(  I am tired of thinking that every pain I have is breast cancer metastasis.  I am wondering if this worry will every go away, or if it is something I will be dealing with forever.  

Last Tuesday was another 6 month visit with my onologist, Dr. Whisenant.  Everything is looking good, Yeah! We talked a lot about my having lots lots of hot flashes, sometimes as many as 20 a day.  (This is a side affect of early menopause from having my ovaries removed, and the anti-estrogen medication arimidex)  The ones  during the day are just an annoyance, but the night ones wake me up.  So a lot of the time I feel kind of tired.  He thinks I should start taking low dose Paxil, which is an antidepressant.  (It was recently approved by the FDA as the first non-hormonal treatment of hot flashes.  I'm not a candidate for hormonal therapy because of the breast cancer)  I am not 100% sure I want to take this, but am seriously considering.  We also talked about my bone density, which is not so good.  The chemotherapy, early menopause, and anti-estrogen medication have not been very good for my bones.  We were hoping that the Zometa (medication that has been shown in studies in Europe to decrease breast cancer recurrence in combination with arimidex, and also increases bone density) would stop the osteopenia that I have in my back, but it was worse on my most recent bone density test.  Don't get me wrong, I am grateful to be alive, but sometimes I wonder what my quality of life will be like a few years down the road.... 

Saturday, January 12, 2013

Happy New Year!

I hope everyone had a Merry Christmas!  My life is getting back to normal, which is so nice, but it doesn't make for a very interesting blog.  I've had a little medical excitement, which included having my ovaries removed on November 14th.  I debated back and forth for a month trying to decide whether I should do a full hysterectomy or a bilateral salpingo-oopharectomy (This is a fancy name for the removal of the ovaries and fallopian tubes which I will refer to as a BSO).  There are advantages and disadvantages to both procedures, and I waffled back and forth until 5 minutes before I had the surgery.  In the end I opted for just the BSO.  A hysterectomy is a bigger surgery and has a 6 week recovery time which includes no lifting.  This is a problem because of my 2 year old.  I have already had 2 surgeries which made it so I couldn't take care of Zach, and couldn't face another one so soon.  The BSO recovery was only about 1 week, and had no lifting restrictions.  Also, a full hysterectomy would give me no advantage as far as getting ovarian cancer.  So why suffer more than necessary?  I am 6 weeks out from the surgery and it wasn't bad at all.  It was a laparoscopic procedure with minimal pain.  And, the best part about it is that my pathology was clear! No Cancer! My Dr. told me that about 10% of women my age with a BRCA mutation already have ovarian cancer by the time they have the surgery, so I was really worried.

The worst part about having no ovaries is menopause.  Natural menopause is gradual, but surgical is instant and it is way worse and irreversible. (If you have had breast cancer, hormone replacement is not an option) People laugh about it, but it is isn't funny,  I am not sleeping well at night because of multiple hot flashes and night sweats. It is also not good long term because of increased risks of dementia, heart disease, and osteopenia (weak bones).  It actually shortens your life span.  So, I will have to be really careful about diet and exercise from now on.  That being said, at least I won't have to worry about ovarian cancer, and in the whole scheme is things, it is not the worst thing either.

I am still dealing with a lot of fear about a recurrence.  I talk about my cancer very openly, and try to find the humor in all of it, but inside, I am worried that it will come back.  I had a cough that just wouldn't go away from September until the first part of December.  You can guess what was going through my mind during that time.  The anxiety culminated about 3 weeks after my surgery when  I started having chest pain on the right side.  It lasted for 2 or 3 days, and I think the angst about it exacerbated everything.  I ended up in the ER thinking for sure I had a pulmonary embolism or lung metastasis.  I had a CT scan of my chest and lots of labs drawn and everything came back normal.  I was so relieved when the dr told me the results that I started crying.  The pain went away the next day, and I felt so dumb for going in.  Especially for getting the CT scan that exposed me to so much radiation.  I did get some peace of mind, and it taught me a lesson to not overreact and be irrational, so I guess it wasn't all a loss.

Five of my cousins have come back positive for the BRCA mutation, and one of these has been recently diagnosed with breast cancer at the age of 40:( When I heard about the diagnosis, it made me sick to my stomach, because I remember how hard it was when I first got diagnosed.  I want this to be the last time someone in my family gets breast cancer, and I feel the only way this can happen is if everyone gets tested.  The knowledge that I was BRCA positive would have at least given me options.  It would have allowed me to have a prophylactic mastectomy and BSO, or I would have caught my cancer much sooner.  If you are reading this and if you are related to me on my moms side.  Please please please get tested for the BRCA gene mutation, and go get a mammogram.  Early breast cancer has NO symptoms, I felt completely fine before I was diagnosed, that is why it is so scary.  I am worried that I have cousins walking around with breast cancer right now, and they have no idea it is there.  The men in my family need to be tested too because they are at an increased risk of breast cancer, and also, they can pass it to their daughters.  I feel so strongly about this, because I don't want anyone else to go through what I have been through in the last year and a half.  I am thinking a lot about my cousin that has been recently diagnosed and I am hoping and praying that all goes well for her.

My next surgery is planned for May 3rd.  I am going to have my radiated boob, abdomen, and sides of my abdomen touched up a little bit.  I hate to have another surgery, but I feel like my body is so messed up, and I want to get it a little more back to normal.

On a lighter note, we are going on a fun trip to Spain in April.  This is our third attempt at this trip and I think it will be a go this time around.  It was initially planned for 2 years ago right before Paul's Dad passed away.  He always wanted to go there and it was going to be his last trip before he died,  but his cancer progressed faster than expected and he didn't make it.  We were going to reschedule for last year, but I was undergoing treatment for my cancer. We are taking all of the kids except for Zachary, and Paul's mom is going too.  I am really looking forward to it!

I am back to work and liking it.  It has been 4 months now, and is it is good to be back.  I missed taking care of babies, and all of the fun people I work with.  A lot of my co-workers are still wearing the Team Nancy pink bracelets.  I am grateful for all of their support!

I have a lot to be grateful for at the start of this year.  Foremost, I am thankful to be alive, and that my family is healthy.  I hope that everyone will have a happy and healthy new year.

Nancy


Monday, September 10, 2012

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

Sunday, July 29, 2012

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



Thursday, June 21, 2012

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

Saturday, May 5, 2012

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