The Scoop On Lymphedema

Lymph nodes are immune cells that filter out harmful substances in our lymphatic systems.  When a woman undergoes a mastectomy or lumpectomy a doctor may decide to remove lymph nodes that drain from the breasts to help determine the extent of the cancer.  Cancer found in the lymph nodes tends to lead to poorer prognoses.  When lymph nodes are damaged or removed as a result of surgery, radiation, infection or trauma, lymphedema can occur  Lymphedema is the swelling of the arms or legs due to an accumulation of lymphatic fluid.

Lymphedema can occur at any time after lymph nodes have been compromised.  Symptoms include:  persistent swelling of part or the entire arm, fingers and toes, heaviness and/or tightness  in the arms, limited range of motion, aching or discomfort, and in severe cases hardening or thickening of the skin.  If you experience any of these symptoms, please contact your doctor immediately.

There are different stages of lymphedema.  Stage One is known as “Spontaneously Reversible”.  During this stage the skin or tissue indents to the touch.  Stage Two is “Spontaneously Irreversible.”  The tissue in your arms may have a spongy consistency, but does not indent when you touch it.  Stage Three is “Lymphostatic Elephantiasis”.  At this stage the swelling cannot be reversed and limbs will appear large.  The tissue in the arms will become hard.  If left untreated, the swelling will continue to accumulate becoming a breeding ground for bacteria and infections.  Loss of functioning and skin breakdown may occur.  In the most severe cases, a rare lymphatic cancer, known as Lymphangiosarcoma, may develop.

When I underwent my prophylactic bilateral mastectomy I was told by Dr. Campbell that she would remove lymph nodes to make sure there was no cancer.  (Note: It is not common to have lymph nodes removed during a preventative mastectomy, but some doctors prefer to perform the biopsy as a precaution.)  There are two different types of lymph node dissection.  If cancer is thought to have spread to the lymph nodes, the doctor may decide to perform an axillary lymph node dissection.  The number of nodes removed depends on the location of the cancer.  This procedure is the most invasive.  A sentinel lymph node dissection removes the first few nodes that filter the fluid that drains from the breast.  These nodes would most likely be the first to contain cancer if it has spread.  If cancer is not found, then it is unlikely the cancer has spread.

On the day of my mastectomy a nurse came to explain the sentinel lymph node dissection to me as this is the procedure that Dr. Campbell would perform.  The nurse injected each breast with blue radioactive liquid four times.  (It didn’t hurt nearly as bad as the epidural needle they use during labor!  Side note, the blue dye turns your urine blue for a few days.)  The liquid drains towards the lymph nodes and lights up a path for the surgeon to find the sentinel nodes.  My surgeon only took five or six lymph nodes, but the number of nodes taken can be as high as thirty.  The lymph nodes are sent off to a pathology lab for analysis.  I am happy to say that my lymph nodes can back free of cancer!

As mentioned before, if you have lymph nodes removed or receive radiation around your lymph nodes you have a lifetime risk developing lymphedema.  However, there are preventative measures you can take to lower your risk.  After my mastectomy, it was very important to rest my arms and avoid any strenuous activity, but my plastic surgeon told me to begin arm exercises early on.  Raising my arms out in front of me, out to the side, over my head and doing shoulder rolls were great ways to gain my range of motion back.  Not only would it help prevent frozen shoulder, but it also encourages movement of the lymphatic fluid.  I had very limited range of motion in the first few weeks following my surgery, but by continuing with my exercises I now have complete range of motion back.

It’s also important to protect your arms and avoid cuts, burns as scrapes.  Since lymph nodes may have been removed during surgery or damaged during radiation, your lymphatic system may not be as strong as it once was, therefore not able to filter out any harmful bacteria that could lead to infection.

If you’ve had a large number of lymph nodes removed, your doctor may tell you to avoid having a blood pressure reading in that arm.  I always remind doctors that I’ve had lymph nodes removed on both sides.  Some doctors may want to take a blood pressure reading from my leg, however my breast surgeon says that since she only removed a small number of nodes, an occasional reading on my arm won’t do harm.

If you travel by air or are exercising, wear compression arm sleeves.  I received my first pair in the mail last weekend.  The cabin pressure in an airplane can cause increased swelling in your arms.  When exercising, especially in heat, your arms and fingers may begin to swell also.  The idea behind compression arm sleeves is help circulation and prevents swelling.

If you are experiencing any of the symptoms mentioned, please reach out to your doctor.  For more information on lymphedema, please check out the following links:

www.lymphnet.org
www.mayoclinic.com
 

Did you hear about Angelina?

“Wake up!  Angelina Jolie had the same surgery as you!” is how I like start off all of my days.   I mean, we have so much in common so it was no surprise to me.  We both have brown hair.  We both have handsome husbands (I love you, Jason!).  She has a daughter named Shiloh and I have a dog named Shiloh.  We both speak English.  Oh yeah, and we both have the BRCA1 mutation and chose to have a mastectomy  to ensure that our children won’t lose their mommy to breast cancer!

Angelina Jolie wrote in the New York Times, “We often speak of Mommy’s mommy, and I find myself trying to explain the illness that took her away from us.”  Angelina’s mom died of ovarian cancer after a decade long battle with the disease.

Jason woke me up at 5am to tell me that Angelina Jolie underwent the same prophylactic double mastectomy as me during the same time frame (January-May for me and February-April for her – technically I was first).  I love being woken up early in the morning to hear about celebrity gossip.  I may have muttered something like, “That’s great.  Copycat.” and dozed back off to sleep only to be woken up several more times by facebook notifications (“Did you hear that Angelina Jolie had the same surgery as you??”) and my mother-in-law (“Put on the news!  Angelina Jolie had the same surgery as you!”).  All these interruptions while I was trying to sleep made for a grumpy morning.  I already hadn’t been sleeping well since my exchange surgery on May 7^th, but I was still very sore and achy and had to be at Dr. Campbell’s office by 9:45am.

I was being bombarded by Angelina’s mastectomy on every radio station on the way to my doctor’s office.  People debating whether they would remove their breasts if they had a high risk of breast cancer.  Most of the women said they would do the same thing as Angelina and commended her for being “so brave”.  Every radio station was talking about Angelina’s breasts, but all I wanted to listen to was a Bruno Mars or Fun. song!

After a quick stop at the new Wawa for an iced coffee, I arrived at Dr. Campbell’s office.  Unlike other doctor’s offices that are cold and unwelcoming that resemble the hospital in One Flew Over the Cuckcoo’s Nest, Dr. Campbell’s office is very comforting and relaxing.  Classical music plays in each room (I’m not really sure where it’s coming from, it’s like the music is just in the air!) while angels are all around you making you feel safe. Dr. Campbell greeted me with a hug and asked me how I was feeling, and then asked, “Did you hear about Angelina Jolie?”  I may have muttered something ackward like, “Oh yeah, now it’s cool to have a mastectomy!”

My visit with Dr. Campbell went well.  She said that everything is healing wonderfully since my exchange.  I gave her a few FORCE brochures and my cards to hand out in case any women want to reach out for support, and she released me from her care.  It was bittersweet.  Dr. Campbell played such a huge part in my decision to have a prophylactic mastectomy.  Without her warmth and compassion, I don’t know if I could have gotten through my surgery as optimistic as I was.

As I was leaving the office I received a voice message from Linda Hurtado of ABC Action News.  I had interviewed with her before my surgery, and ABC aired my story on April 1^st.  The voice message said, “Hey, Terri, it’s Linda Hurtado.  I’m sure you heard the news about Angelina Jolie…” and so began my whirlwind of a day.

Linda Hurtado is a breast cancer survivor who was diagnosed with breast cancer almost two years ago.  She had a double mastectomy and has spoken out about her journey many times on the air.  In January I decided to e-mail her to see if she would be interested in sharing my story.

Linda and her cameraman came over to my house around 11:30am to do a follow up interview.  We talked about how I am feeling since my exchange surgery, and of course Angelina Jolie. 

About ten minutes after Linda Hurtado left, I received a call from my genetic counselor at Moffitt.  I haven’t spoken to her since last May when I went in for genetic counseling.  She asked me if I would be interested in talking to a few news stations about my story with BRCA.  I thought it was kind of strange.  Am I the only previvor that Moffitt has on record in Tampa Bay?  I know for a fact that I’m not!  But I agreed to speak with other news stations if it will help spread awareness.  Two minutes after I hung up with my genetic counselor, Patty from Public Relations at Moffitt called me.  She wanted to meet me at Moffitt in an hour to set up the interviews.  Part of me wanted to say no because I was exhausted (I’m still recovering from surgery!), but I’m always saying how I want to help other women in my situation and didn’t want to miss this opportunity.

At Moffitt, I met with Fox news for an interview and Bay News 9.  As I was leaving I received an e-mail from Sue Friedman (founder of FORCE) asking me to speak with the Tampa Bay Times for an interview.  All these interviews, and I actually had to turn two down because I couldn’t make it to their interviews on time!  It felt really good and empowering to spread awareness of my BRCA mutation.  However, I was running here there and everywhere that I overworked myself.  I became very lightheaded and weak.  That is not good for someone who is only a week out of surgery.  I tried to relax when I got home, but I was just too excited!

I think the media did excellent jobs telling my story and mentioning FORCE.  Jason was so excited that he was mentioned in the same sentence as Brad Pitt!  “In the end, having a preventative mastectomy is a personal and family choice.  One Terri’s husband and Angelina Jolie’s husband supported.”

Before I learned of my BRCA 1 mutation last year I had never heard of having a preventative mastectomy.  At first the idea sounded drastic to me, but I soon realized that dying of breast cancer was more drastic.  I praise Angelina Jolie for coming forward and speaking of her journey.  Choosing to have a preventative mastectomy is a scary decision.  You may feel like you’re mutilating your body and wonder if you will feel less of a woman.  I can speak from experience that you are not mutilating your body, and I feel stronger as a woman who could make this life changing decision.  I hope that Angelina’s message will help inspire women who may be scared and feel alone in their journey, or who may think they are high risk for breast or ovarian cancer to speak with their doctors and know there are great resources out there to help them with their decision.

ABC News Interview:  http://www.abcactionnews.com/dpp/news/health/locals-react-to-angelina-jolies-decision-to-have-a-double-mastectomy-to-avoid-breast-cancer

Fox News Interview:  http://www.myfoxtampabay.com/story/22250193/2013/05/14/my-whole-world-came-crashing-down

Tampa Bay Times Interview:  http://www.tampabay.com/news/health/angelina-jolies-decision-draws-praise-from-tampa-bay-patients-physicians/2120976

Angelina Jolie's Op-ed:  http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?_r=0

 

 

Cancer Doesn't Discriminate - One Family's Battle With Mesothelioma

Mesothelioma is a cancer caused from being exposed by asbestos.  Often times symptoms do not appear until several years after exposure, which makes it difficult for doctors to make an early diagnosis.

I was contacted recently through my RainyGenes blog by a man named Cameron whose wife was diagnosed with mesothelioma 8 years ago.  He asked if I would share is story on my blog.  I am more than happy to spread awareness of any type of cancer whether it be breast cancer, lung cancer, brain cancer or mesothelioma.  Cancer doesn't discriminate no matter what form it comes in.

Here is Cameron's story...

How My Wife's Cancer Changed Our Lives

My wife Heather and I were an ordinary couple with an infant daughter Lily in November of 2005.  That was when our life took a most unexpected turn after Heather was diagnosed with mesothelioma.  It was a frightening time, since neither of us knew how the disease would proceed, but I did my best to stay strong for her and to support her as best I could as she began to undergo the necessary treatments.

A cancer diagnosis throws a monkey wrench into a typical life.  Instead of going to work every day, our hours became consumed with traveling to see doctors and specialists for consultations and treatments.  It was time-consuming and scary, and Heather had to endure the physical challenges of surgery, chemotherapy and radiation.  Meanwhile, I had to take care of her and Lily and provide her with the emotional strength that she needed in order to get through this difficult period.  My perspective changed, and my ideas about what was important in life altered radically.

Throughout the whole process, I became much more aware of how precious time with our loved ones is.  Now that Heather has miraculously come through her ordeal and is cancer-free, I treasure every moment that we have together.  I also have taken the opportunity to return to school and study Information Technology, a challenge for which Heather's illness equipped me, since I learned so many lessons about time management and dealing with stress during her illness.

I also learned that as much as I wanted to provide everything that Heather needed, I could only do so much.  That is something that every caregiver should keep in mind, especially when an illness comes up unexpectedly as this one did.  I had no qualifications or expectations that I would be assisting my wife in this manner, but it became my daily reality.  While I don't regret that for a minute, I learned that a caregiver has to be willing to count on others for support during these times.  We would have had a hard time managing if it hadn't been for all of the friends and relatives who generously offered their time and resources.  

Allow others to help in a time of crisis is not weakness.  It is merely a part of being human.  As terrible as Heather's cancer was for both of us, it brought us a deeper appreciation for the bonds of friendship and love that exist among us and so many other people.  Despite the terrifying odds that come with a mesothelioma diagnosis, Heather is still here, healthy and cancer-free over seven years later.  She refused to take her diagnosis as a death sentence, and because of that she has been able to see our baby daughter grow into a beautiful little girl.  We are so thankful for everything we’ve been blessed with, and we hope that our story of success over cancer can be a source of hope and inspiration to all those currently fighting cancer today.

 

For more information on mesothelioma:

http://www.curemeso.org/site/c.kkLUJ7MPKtH/b.5610103/k.9477/Mesothelioma_Treatment_Help.htm

http://www.mesothelioma.com/

 

Heather, Lily and Cameron

Cameron, Lily and Heather

 

Happy BRCA-versary

April 16th marked my one year "BRCA-versary." I don't think being BRCA positive is really a means for celebration, but it was a moment in time that changed my life. I used to pretend that I was invincible from getting breast cancer. If I didn't think about it then I wouldn't get it. That is a very dangerous thought process and quite ignorant for someone with a strong family history of the disease, but it's how I lived prior to April 16, 2012.

 

After I received the news (over the phone!) that my BRCA results were positive I immediately went into a confused and sad frame of mind. Why is this happening to me? How did this happen? My life is over! 

 

I had very little knowledge of what my options were to prevent myself from getting breast cancer. Sadly, this happens far too often. Women receive their BRCA results from a doctor rather than a genetic counselor and their mutation isn't explained to them. All my doctor told me was that I have a mutation and I should have a preventative mastectomy with expander placement as soon as possible, before I have any more children.

 

I'm so glad that I didn't rush into making any decision right then. Instead, I began researching. I called my OBGYN who referred me to speak with an oncologist. Then I called Susan G. Komen to find local support groups. They directed me to FORCE (www.facingourriskofcancer.org). That is where I found an abundance of support. I learned that speaking to a genetic counselor could give me unbiased information on my options with surveillance and surgery. I began talking about my BRCA mutation to just about anyone who would listen - FORCE message boards, Facebook support groups, friends, strangers, my dogs (okay, maybe not the last two, but you get my point).

 

I did my best to cover all of my options to find what was the best decision for me.

 

Eating a healthy diet and exercising - it's important to do this anyway,  but could I prevent breast cancer by eating broccoli and cutting out junk foods? Probably not and there is no guarantee.

 

Surveillance - I was really leaning towards surveillance at the beginning of my journey. Most doctors would recommend alternating a mammogram and MRI every 6 months for high risk patients. After my first MRI, which showed a suspicious spot, and an ultrasound (everything was fine), I realized that early detection is key to beating breast cancer, but prevention is even better.

 

Prophylactic Mastectomy - it reduced my risk of getting breast cancer from 87% to about 2%. I would rather have a mastectomy and reconstruction while I was young and healthy rather than waiting to get breast cancer and have to go through surgery AND have chemo or radiation.

 

I waited nine long, anxiety-filled months before having my mastectomy.  It's been 13 weeks since underwent a surgery that forever changed my life and my perspective on life.  I could have easily been diagnosed with breast cancer, but God gave me a chance to take my destiny into my own hands.  Not many people get that.  So I've made a vow to cherish every moment I have with my little boy, my husband, my family, my friends and my dogs.  I won't take things for granted anymore, especially life because it's too precious and can easily be taken away from you in the blink of an eye.  Watching my little boy splash in the waves at the beach or laughing at Mater as he watches Cars for the 50th time or staying awake to watch his angelic expressions that he makes as he sleeps are what makes my existence meaningful.

 

My life was so different a year ago.  I didn't think I would have the courage to face the toughest decision of my life, but here I am.  I made it.  I survived.  I am stronger than ever.

Happy Birthday, Charlie!

My baby boy is THREE today! I truly cannot believe how fast times flies. I found out I was pregnant on July 11, 2009. I took two pregnancy tests because I didn't believe the first one, then spent the day at Siesta Key. I was on cloud nine with excitement!

On April 2, 2010 at 10:32pm after 27 hours of labor, the most beautiful baby boy I've ever laid eyes on was placed in my arms. My life was forever changed. Gone were the nights of sleep and rest, making plans on my terms and putting myself first. My world revolved (and still does) around Charlie. Since Charlie was born I've had a handful of decent nights sleep. I know all of the words to Mickey Mouse Clubhouse and Special Agent Oso. I spend my days playing with trains and puzzles, making chocolate milk and going on bear hunts. Such simplicity can bring children so much happiness.

I owe Charlie thanks for bringing meaning into my life and helping me appreciate the finer things. Charlie is such a delight to anyone who meets him (except maybe the young couple in the booth behind us who are trying to enioy a nice dinner but have a toddler staring them down and carrying on about Oso). He is funny and smart, clever and creative, shy and personable. He's my baby and as his mama I hope to make him proud.

I made a video for his birthday, but you can only view it on a computer (sorry, I'm stikk new to YouTube). Enjoy!

http://www.youtube.com/watch?v=p4rT04eRZMc

Happy birthday, Charlie Ryan! Mommy and Daddy love you SO much!

Xoxo

My Television Debut

Today was my big television debut! Two days before my prophylactic mastectomy I interviewed with Linda Hurtado from ABC news in Tampa. I told her and her cameraman all about my family's history of breast cancer,  my fears of getting breast cancer and why I chose to have remove my breasts to see to it that I dont get breast cancer. It's a very personal story, so I was stepping out of my comfort zone to try to help other women facing these same fears.

Check out my news story on ABC news!

The news story asks, "Is removing a healthy breast taking control of your destiny?" When a doctor tells you that you carry a genetic mutation that brings with it an 87% chance of developing breast cancer, but you can drastically reduce that risk to less than 1% if you have a preventative mastectomy, then YES I took control of my destiny. Of course you can never be 100% certain that there isnt residual breast tissue left that may develop breast cancer, but it's highly unlikely.

I'd like to share this link below. It's absolutely beautiful, yet heartbreaking. A husband documented is wife's battle, and defeat, with breast cancer through a series of pictures.
http://mywifesfightwithbreastcancer.com/

Some may say that my decision was "drastic" or "unnecessary."  I think dying from this dreadful disease is "drastic" and "unnecessary." I did what I could to help ensure that breast cancer doesn't steal me away from my family. I would go through the anxiety, surgery, drains, fills, shooting pains in my back and arms, emotional roller coaster of seeing my body be so foreign to me and another surgery for my "real" implants again and again if it means that I won't see the same fate as my Aunt Rainy and millions of other women.

If I can help just one woman traveling on the same journey as me, then I will be satisfied.

Xoxo

P.S. shout out to my Hags who were shown at the end of the news story. Love you ladies!

Scar tissue goes POP!

Yet another restless night.  I'm becoming quite the night owl.  This Thursday will mark my eight week anniversary since my mastectomy.  Sometimes it seems surreal, but I am becoming quite accustomed to my "new" body.  I started a diet two weeks ago and have lost about 7-8lbs.  I'm eating healthier and I feel good.

Today I had my 6th fill in my expanders.  I am now up to 700cc's in righty and 690cc's in lefty.  Why the difference you ask?  Today I went in for my weekly fill with nurse Debbie.  The fills take about 30 minutes, but aren't painful.  Debbie and I share a nice conversation that ranges anywhere from talking about yoga, our kids and our husbands to how large I want to go with my expanders.  She normally fills me with 50cc's in each side, but last week I asked her if we could try more since I wasn't having much pain anymore.  Last week she put 75cc's in each side.  Lefty was pretty sore for about two days, but I was feeling better by Thursday.  Today she put the same amount in each side.

Debbie filled righty first - no pain at all.  In fact, because I am completely numb where the port is I felt nothing at all.  The port on lefty is up a bit higher where I still have some feeling, so I always feel her inject the needle.  I still had a bruise from last week and so it hurt more than usual when she started filling me.  I was trying to be a trooper and not complain about the pain, but the more she pressed down on the pump the more I could feel my skin stretching and the pain starting in my back.  Still, foolishly, I didn't say anything and continued on with our conversation.  When we had about 10cc's left to go she stopped for a second because her hand was hurting her.  I asked her if we were almost finished because I was feeling the stretching "a little bit".  She said we could stop, but since we only had 10cc's left to go I said to finish it.

Then I heard, and felt, a big snap in chest.  As soon as Debbie started to fill again I was in excrutiating pain.  I cried out.  Of course she stopped immediately.  It felt like something broke in the upper left part of my breast.  Then the pain shot up my shoulder and down my left arm into my fingers.  The pain brought me to tears.  Debbie explained to me that it was most likely scar tissue tearing from being stretched.  She offered to take some of the saline out, but I just wanted the needle as far away from me as possible.  Once the pain began to subside I went home and promised to call her if I wanted her to take some of the saline out.

I was still in tears when I got home, which scared my husband.  The pain was getting worse.  I decided to take a percocet to see if that would ease the pain.  It certainly did.  Unfortunately I didn't get any rest because Charlie wanted me to play with him all afternoon when he got home from school.  Once the percocet wore off this evening they pain was back.  I couldn't get comfortable.  If I laid on my back the pressure of the expanders made it hard to breath.  I couldn't lay on my side without pain shooting down each arm.  Finally, around 11:00pm I went back to my trusty old recliner that helped me sleep through the first two weeks post-op.  I slept for about two hours when I woke up in pain again.  Then Charlie woke up and wanted to cuddle.  (I have to admit, his cuteness helped.  I said, "Mommy's boo-boo's are hurting me.  Would you rather cuddle with Daddy so I cant get better?"  He said in his sweet little voice, "Nope.")

So. here it is 2:23am and I resorted to another percocet.  The pain is now tolerable, and Jason rubbed my arm to ease some of the tension.

As I've said before, you can't ever be truly prepared for all of the aftermath of a surgery like this.  There are good days, and there are bad days.  I've been blessed with mostly good days, but today has been quite trying.  I'm exhausted (what else is new).

In other news, I received my business cards from FORCE, and I am very excited to be an Outreach Coordinator here in Tampa.   I will post more about that (hopefully) tomorrow, as long as this pain has subsided.

Goodnight, everyone!  Let's hope these pain meds help me get some much needed rest.

Xoxo