The bump in the road has grown.

Paul here.

You may or may not have heard, but we found out last March that Nancy has had a recurrence of her cancer.  It is Stage 4 (non-curable) and it came as devastating news and continues to be.  The plan for her treatment is to provide as high of a quality of life as possible for her for whatever amount of time she has left. Our family is doing our best to process what the diagnosis means and how we will move forward.

The first thing that comes to mind for most people is the inevitable and understandable response of “how long”? The short answer is we don’t know.  The average survival time for people who are diagnosed with metastatic breast cancer is roughly 2 years.  Those studies were done years ago, there are newer treatments and each person has their own story. That is one of the hardest things to deal with, the simple uncertainty of not knowing how Nancy’s story will play out.  We are focusing on trying to make the most of the time that we do have together and to make it as good as possible.

For a variety of reasons, we have not been good about getting the news out nor about putting out updates. That has created a situation where many concerned people or people that we care about are either unaware or wanting to know what is going on.  If this is the first that you have heard of this news, we are sorry that it did not come out sooner.  When the news first came, it was very difficult to process and felt all encompassing.

I can assure you that we are in good hands and that we are thoroughly seeking the best treatments and options available.  Nobody wants the outcome to be better than we do.  Cancer is very tricky and unique for each individual, so news of a cure for a specific cancer may not apply.  While well intentioned, it is not usually helpful to be given advice of new cures or treatments.  Nancy is currently in a new study very specific to her and her type of cancer. Thanks for understanding.

Moving forward, I am planning on having regular updates.  I will probably do them by email and blog.  This is an attempt to help people we care about feel in the know and to get the message out in a more controlled way.  Up until now, we have updated people as they would ask by text, phone or in person.  That requires a lot of constant updating and is less efficient.  By getting our regular updates, we can help people know what the current status is and will need fewer touch-points to do it. 

While I am thinking about it, we would be very ungrateful to not recognize those who have been so generous and caring to us in this process.  We have an amazing family, the world’s best friends and the Church’s best 2 wards. Our community has been better than we could have ever hoped for in every way imaginable.  Between the meals, the rides, the walks, the trips to and from the hospital, the fill-ins the visits and everything else, we have been truly blessed.  If you are reading this and have in any way helped us out in the last 11 months, we really do recognize the help and support and appreciate it – even if we haven’t always said so. We have been blessed in many other ways that we could not possibly adequately describe here. 

We are trying to stay positive, hopeful, and have faith.  It is not always easy, but I do think that we are trying.

Current Status/history

There is lymphatic spread throughout most of her chest and reaching up her neck and down towards her abdomen.  There is slight involvement in her lungs, sternum and a rib.  Her pericardium has had a lot of issues and she has had 2 windows placed.  That is where they cut holes in the lining of her heart. Her pericardium filled up 2x with nearly 1 liter of fluid.  The fluid and the pericardium tested positive.  She has been on a couple of different treatments and will likely transition to more.  If you are interested in specifics, I can expound later.  There have been 2-3 stays in the hospital and various surgeries and side effects.  She had multiple pulmonary emboli, effusions (water on her lungs), and massive clots the length of her leg into her abdomen.  She has paralysis in a vocal cord.  She at one point had completely lost her voice but has improved a lot.

She has been home for a couple of months now and feeling relatively well.  Her ‘well’ is relative.  She is able to get around for the most part, but at times is fatigued, nauseated or otherwise not feeling well.  The illness has had a mental effect as well. 

The next thought usually goes towards our kids. A quick update on them; Emily is a sophomore at BYU and recently got back from a study abroad in Jerusalem.  Jake is a junior at Highland High, Sam is in 7^th grade and Zach is in 3^rd.  They are resilient and doing about as well as could be expected.  While I might be biased, I think our kids are amazing. 

As I mentioned, I would like to get updates out more regularly.  If you would like to get these updates, either sign up for the blog or let me know and I can add your email address to an email group. My email address is plimburg@certapro.com.  My phone number is 801-554-0440.  Email or text me your preference.

Once again, we thank each and everyone of you for your caring and for everything that you have done – whether recently with Nancy’s illness or in the past.

-Paul and Nancy.

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.

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.... 

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

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