Crowning Achievement for Lymphedema

May 1st 2016 was nothing shy of a dream come true! I won the Mrs. Florida International 2016 title and was crowned by my husband, Ruben Santiago! With so many thoughts racing through my mind, I found myself just trying to catch my breath as the euphoric high of every single emotion was hitting me all at once.  This was a crowning achievement in more ways than one and it takes an immense amount of patience, time, support, preparation, empowerment, courage, faith, belief and love to build a passion filled platform.

5 years ago had you told me I would wake up on May 2nd 2016 having conquered many fears by coming out of silence with my diagnosis of Primary Lymphedema and would unlock the “Key” to my significance, I would have never believed you. Through an immense amount of unconditional love from my husband Ruben, encouragement from ALL of my family members, support from the Lymphedema community around the globe and empowerment from countless individuals, as well as a healing approach from the inside out, I have broken the chains that once controlled me and held me captive, yet it was not possible to achieve such things all on my own.

Ruben, MyLove you have literally filled my heart and our marriage with the greatest gifts of all and ones that I could never repay you for! I am honored to be your wife and I Thank You for inspiring me to continue fulfilling this passion filled purpose.

To ALL of my family, your unwavering love and belief for my journey has moved me to tears. My title may have changed, but I will always be “Titi Mimi”

Jason Fontes, I made a promise to you 4 months ago that your life and legacy would live on, as my “purpose” now became that much bigger after Ruben and I experienced your loss. I dedicate everything I do in honor of you and I know you are always shining upon us! We Love You Brother!

My Director of the Florida International Pageants, Marianne Oden. I am blessed to have a woman beside me through this new chapter of my journey as Mrs. Florida International 2016. A role model who is filled with empowerment and inspiration! You not only provide an opportunity for all to share their hearts and platforms, but a bigger chance to see gifts within ourselves that maybe we didn’t notice could create change before.

The judges who endured the toughest job of all. Thank you for investing your time and hearts to listen, watch and believe that I will continue being not only the Voice of Lymphedema but also the Voice of Significance, making the State of Florida as well as the rest of the world proud!

To the incredible team of amazing individuals, every one of you played an important role in preparing and supporting me for this adventure!  The Florida International Pageant Team, Marianne Oden, Katy Carson, Pam Livingstone and their entire Production Team, all the volunteers and the team at Westgate Resorts. Carmen Steffens, mediusa and medi for help in Haiti, Lymphatic Education and Research Network, LymphCareUSA, BSN Medical, Tactile Medical and the National Lymphedema Network. MadSkye Advertising, Clay Spann PhotographyRegalia Magnificent Apparel, Dawn Brinkman, Diane Ventura, Suzy Bootz, Brandi Lamb and Robin Miller.

Mrs International pageant and directors, Mel and Mary Richardson. I am humbled to grace the International Stage in July representing the State of Florida! Thank you for creating an opportunity to bring Women together from all around the world and placing importance on giving voice to various platforms.

My Florida International Sister Queens, I was honored to share in this adventure and together we will create change around the world with each one of our platforms. To my new Miss Teen, Jaclyn Weber and Miss International, Rachel Barcellona. I cannot wait to experience the International pageant in July with you both and am looking forward for the opportunities and memories that we will build as Florida International Queens!

Live to Inspire,

Amy Santiago

Mrs. Florida International 2016

 

 

 

Lymphedema after Breast Cancer

Thousands of men and women are diagnosed and treated for breast cancer every year. We know the numbers are a massive difference when we look at the break down between the two, however treatments are very similar. Most breast cancer survivors are able to continue on with life after treatment or surgery. Others are left with a daily reminder of one huge obstacle they were able to overcome, but now faced with a bigger challenge ahead.

Women

In 2016, it is estimated that among U.S. women there will be:

  • 246,660 new cases of invasive breast cancer (This includes new cases of primary breast cancer among survivors, but not recurrence of original breast cancer among survivors.)
  • 61,000 new cases of in situ breast cancer (This includes ductal carcinoma in situ (DCIS) and lobular carcinoma in situ (LCIS). Of those, about 83 percent will be DCIS. DCIS is a non-invasive breast cancer and LCIS is a condition that increases the risk of invasive breast cancer.
  • 40,450 breast cancer deaths

Men

Breast cancer in men is rare, but it does happen. In 2016, it is estimated that among men in the U.S. there will be:

  • 2,600 new cases of (This includes new cases of primary breast cancer among survivors, but not recurrence of original breast cancer among survivors.)
  • 440 breast cancer deaths

When you are talking about just one year and country alone, these numbers are shocking! What is even more shocking is that 40% of ALL breast cancer survivors will develop lymphedema. At this rate 123,064 women will develop secondary lymphedema and 1,040 men just from the 2016 breast cancer cases. Lymphedema is increased swelling in an extremity due to damaged lymph nodes. Typically the extremity that would be affected in a breast cancer case would be the upper extremities, arms and hands. Some of the reasons are due to Chemotherapy and or Radiation for cancer treatment. When surgery is done for breast cancer, it is more common than not for lymph nodes to be biopsied to see if cancer has spread to them. If there is cancer in the nodes, this can impact prognosis and alter treatment or removal of lymph nodes. The more lymph nodes removed, the greater the risk of lymphedema.

Lymphedema can occur immediately, or over time and can be so mild as to be hardly noticeable or so severe that it is painful and disfiguring. The goal would be to catch it in its early stages so the extremity can be maintained and not cause permanent damage to the body. Since the lymphatic system is part of the immune system, its job is to protect against bacteria, viruses, fungi and even cancer. The lymphatic system includes the spleen, thymus, lymph nodes and lymph channels, as well as your tonsils and adenoids. A normal functioning lymphatic system is critical to our health. Although at this time there is no cure for lymphedema, it can be managed with complete decongestive therapy (CDT) by a certified lymphedema specialists and suggested compression garments. Education, awareness and knowledge are crucial when it comes to treating breast cancer, as it can leave you with a secondary situation such as lymphedema.

To learn more about breast cancer related lymphedema, please watch the latest CBS News story on Academy Award winner, Kathy Bates and how she is now a voice for lymphedema around the world.  I am honored to share this platform with her through the Lymphatic Education and Research Network as we continue to build momentum for the 140+ Million individuals around the world that are affected by all types of Lymphedema and Lymphatic related conditions.

Live to Inspire,

Amy

 

Additional Resources for Lymphedema at: Amy Santiago’s Website

Source Used for Breast Cancer Statistics: Susan G. Komen

Traveling with Lymphedema

I know that traveling with lymphedema is a big concern for many people. There has been a lot of discussion over the years about the use of compression and the “dangers” of flying. It saddens me when I speak with people who are afraid of traveling because of their lymphedema.

I am a strong believer that I won’t let anything get in the way of me living my life, especially my lymphedema. I would never want to miss out on the experiences I get from traveling. Traveling with lymphedema is very doable, you just need to do a little extra planning and be aware of situations that might cause you extra stress. As Amy said in her last post, stay in control and don’t sweat the small things!

Here are some of my travel tips:

  1. Compression: Since I have lymphedema and wear compression all of the time anyway, I know that I need to wear compression during after my flight. Talk to your CLT before you fly for the first time to make a plan that works for you!
    • I typically wear my daytime garments (sleeve and glove) through security.
      • Try not to get upset if TSA ask you about your compression garments. I have been pulled out of line and had my garment swabbed so many times that I now expect it and have my answers ready.
      • Try to think of this as an educational experience. If you are asked about it, you can simply explain that you have a medical condition that requires a medical device. In my experience, TSA workers are nice and helpful after that explanation.
    • Once I get through security I go to my gate and bandage my arm (for me that means putting on my bandage alternative). I find that my bandage alternative is more comfortable and provides me with better compression for the flight than my day garments.
  2. Drink plenty of water! I know that many people think drinking water will make them swell more, but remember that lymphedema is a buildup of lymphatic fluid and not water. Drinking water will actually help move the fluid through your system and is helpful for you!
  3. Luggage: If you have upper extremity lymphedema, think carefully about what luggage you plan to bring. You don’t want to have a carry-on bag with a shoulder strap that goes on your lymphedema side.
  4. Food: As Amy so wisely stated in her last post, think about your food options and try to bring snacks from home that you can eat on the flight. You want to avoid sodium filled snacks that can make your swelling worse.
  5. Move around! If you’re going to be on a long flight, you want to make sure that you stand up and move a around a little to help keep things flowing. Don’t keep your limbs bent in one position for too long.
  6. MLD: Especially for long flights I like to do a mini version of MLD while I’m on the plane. This doesn’t need to be a full session, but I like to at least take a few diaphragmatic breaths. It’s calming and also helps my lymphatic system.
  7. Heat and humidity can make you swell more. When I’m traveling somewhere hot and humid, I try and keep my compression on as long as possible before getting the pool or ocean. Water has compression in it, plus swimming is great for lymphedema, but be aware of how long you keep your compression off. You’ll start to feel it when it’s time to put it back on!
  8. Jellyfish: I would encourage you to try and wear clothing that covers your lymphedema if you go snorkeling somewhere that might have jellyfish. From my personal experience, getting stung by a jellyfish (in two different countries) didn’t cause me any physical issues with lymphedema. It did, however, freak me out both times! It also freaked my CLT out when I emailed her from Costa Rica to tell her about it!

Things to bring with you:

  1. Compression supplies: I always make sure to pack extra bandaging materials, an extra set of garments if I have them, and plenty of lotion. It might seem like a silly thing to point out, but it’s much easier to have these items with you than have to worry about replacing something when you’re away.
  2. First aid kit: I always travel with a small first aid kit with antiseptic, band aids, and a topical antibiotic cream, just in case I get a cut, scrape, or anything else while I’m away. (This also lives in my purse at all times!) You are at a higher risk of infection because of your lymphedema and it’s good to be able to clean and cover any wound when it happens.
  3. Prophylactic antibiotics: This is something you should discuss with your doctor, but when I’m traveling out of the country, into the woods, or anywhere that isn’t close to a hospital, I always bring a filled prescription of antibiotics. In my 9 years of having lymphedema I’ve never had to take them, but they make me feel like I have a safety net. If I were to get a cut or even a bug bite that starts to look red or infected, I can take them right away and then find a hospital. This gives me a lot of piece of mind.
  4. Sun screen and bug spray: You want to try and avoid getting a sunburn in general or getting bug bites on the areas with lymphedema. I always make sure to wear and reapply sun screen and bug spray as often as the package tells me.

The most important thing to remember is that you need to live your life WITH lymphedema! Don’t let it or your fears take control. Have fun, experience new things, and most importantly, laugh! Laughing is also great for keeping your lymphatic system flowing! 🙂

Travel well,

Robin

p.s. Here are some photos from my most recent trip to Mexico.

Robin.lymphedema.sleeve Robin.lymphedema.sleeve.dress Robin.feet.beach.lymphedema mexico.lymphedema

Are you Heating Up or Cooling Down?

Does anyone else find his or her symptoms worsening during the summer months? Just because summer is heating up, does not mean your Lymphedema has to. I have made it a point to keep track of my personal journey and have also spoken to others affected by Lymphatic conditions to provide you with some helpful tips and tricks. The most common effects of increased Lymphatic symptoms more so during the summer months seem to be heat, humidity, travel, diet, dehydration and stress. So how do we stay mindful of these effects in order to maintain a healthy lifestyle and thrive with our conditions?

First I encourage you to journal, take photos and track your symptoms good and bad. I have gained so much from doing this since being diagnosed. It has allowed me to mentally and visually track my progress and grasp a more in depth understanding of tools that may not work, and others that are rewarding for my body and condition.

For those of us who live in areas where heat and or humidity are as common as the air we breathe we have to be extra cautious that hydration and diet will play a huge role in aiding proper lymph flow. Extremities tend to expand when temperatures heat up causing swelling and possible infections. Paying close attention to healthier food options and consuming plenty of water has been known to help eliminate built up protein fluid within the body, known as Lymphatic fluid.

When it comes to traveling with conditions that can be taxing on the body it can be stressful, believe me I know first hand. I used to sweat the small stuff, like the fact that TSA would question me through security about the garments I would need to wear on the plane. Having to plan my travel attire and footwear around my garments or having to place my garments on once I got on the plane. Not anymore! I realized the things I was choosing to stress about were completely out of my control. These affects are part of living with a condition so I had to change my perspective on how I dealt with them in order to thrive with Lymphedema.

Some helpful tips for those of you traveling on aircrafts and may need some extra time to get settled with your garments and luggage, I encourage you to speak with the gate agent and ask for a “pre-board” ticket so you don’t stress yourself out by thinking you are holding anyone up in the boarding process. Also bring your own healthy snacks with you, since aircraft options tend to be filled with sodium and fillers that impair the Lymphatic system. Lastly, choose your clothing and footwear carefully, something that is not restrictive. Extremities are going to expand due to high altitudes and the last thing you want is to be uncomfortable especially on long flights.

You have the power to stay in control of your condition by being present and mindful of your symptoms and how your approach can either heat things up or cool them down.

Living to Inspire,

Amy

The End of March – Lymphedema Awareness Month

Historically March isn’t a great month for me. I was diagnosed with cancer (both times) in March and also developed lymphedema in March. If my life was a fictional book, I might see the timing as some sort of epic foreshadowing, as if I was destined to one day declare March lymphedema awareness month. Developing cancer-related lymphedema was one of the most defining moments of my life. It changed the trajectory of my career, my goals, and the way I see the world.

I’m usually happy to see March end, but this year I’m a little sad to see it go. There has been such an incredible surge in lymphedema awareness this month that has both energized and consumed me. I find myself on Twitter and Instagram late at night searching #lymphedema and #LymphedemaOnEllen just to see if there are new posts.

By far, the best part of my new social media addiction is the wonderful people I’ve met. Even though I’ve worked in the lymphedema world for 8+ years, this is the first time I’ve had lymphedema friends and I’m loving it. It makes me feel connected and gives me hope that we will succeed in our shared mission to spread lymphedema awareness.

Thank you to Amy, my friend and blog co-author, and all of my new lymphie friends and siblings out there! You have helped make this an unforgettable March for me. Lets continue to keep the momentum up. I know in my heart that one day we will see lymphedema talked about on Ellen’s show!

All my best,

Robin

Drawing my new lymphie friend, Sarah, made of us! :)

Drawing from my new lymphie friend, Sarah.

Using my lymphedema for good: A NEW information paper for patients at-risk

I was diagnosed with stage III breast cancer when I was 21 years old. Because I was so young and the tumor was large and fast growing, I was treated very aggressively. I had eight rounds of rough chemo, bilateral mastectomies, reconstruction, and radiation. A PET scan showed early on that I had two infected lymph nodes, one in my axilla (armpit) and one under my clavicle, so I was told that I would need a full lymph node dissection and an extra radiation field to my axilla.

Because of these factors, my chances for lymphedema were high and I was sent for lymphedema screening after surgery. Both of my arms were measured for baselines and I was taught about lymphedema. I was read what seemed like a long list of things I would never be able to do again and it crushed me. I remember sitting on the sofa at my parents’ house crying to my father about how terrible lymphedema sounded and how I never wanted it. My plans to get through radiation and move on with a normal life seemed to get further and further away.

I have often thought about how upsetting my initial lymphedema education session was, but was never sure what to do about it. When I talk to patients, I try to explain the reasons behind many of the risk reduction practices, and attempt to make it less terrifying for them. However, it wasn’t until this past September at the NLN conference that the idea finally came to me. I was sitting in a session about Risk Reduction that my good friend, Sarah Stolker, MSPT, CLT-LANA, was teaching and heard her explain that many of her patients react the same way. I realized that I wasn’t alone in this knew I needed to work on the delivery method.

The information needed to be presented in a positive manner! In a way that would encourage safe behaviors and highlight the uses of education and a good working relationship with your medical team. It took me a few tries to figure out the best approach for presenting the info, but I finally figured it out. I am proud to say that it received the stamp of approval from the NLN’s Medical Advisory Committee last week!

This is one of the projects that makes me grateful that I have lymphedema. If the new paper can make the knowledge of lymphedema easier for even just one patient, I will know I accomplished my goal. (Keep in mind though, these healthy habits are good for those with lymphedema as well!)

You can download it here along with the NLN’s other position papers.

I hope that you like it as much as I do!

Best,

Robin

Stronger Together – An open letter to the lymphedema community

One of the major reasons that we wanted to start this blog was to bring together primary and secondary lymphedema in the same place. We understand that there are some differences in our challenges, but we will never lose sight of the emotional side that connects us. Encouragement towards one another makes us stronger as people and friends. We grow from our struggles and thrive with the success of managing our lymphedema together. It is discouraging to hear people complain that cancer-related lymphedema gets too much attention in the media. We understand that it is frustrating for people with primary lymphedema to feel ignored. The reality is that primary lymphedema is much harder to diagnose. It is less likely to have an obvious cause and it can show up at different times in a person’s life. However, we believe that the major point is often missed: LYMPHEDEMA IS BEING TALKED ABOUT IN THE MEDIA! Most people have unfortunately had cancer touch their life in some way. New research and treatments are constantly coming out to try and cure this horrible disease and that makes it a hot topic in the media. Because of this, when cancer patients talk about lymphedema as a side effect of their treatments, the media tends to be more willing to cover it. Our focus as a lymphedema community needs to be on getting the message out there as much as possible, regardless of the outlet in which it is coming from. There is an old marketing term called the “rule of seven” that says that people need to hear a message (ie the word lymphedema) seven times before they will remember it or take an action about it. Seven times! If that is true, we need to focus on getting our message and the word lymphedema out there as much as possible. We want to live in a world where all health care professionals know the word lymphedema. Even if they’ve heard about it from cancer patients, they are still more likely to think of it when they see a formerly “mysterious” swollen limb. That can ultimately lead to more primary patients being diagnosed right? There are over 140 million of us living with lymphedema, yet very few of us bring awareness to it. We need to join our voices TOGETHER to give lymphedema the spotlight it deserves. It’s not until lymphedema is a household name and recognized by the masses that it will start to be diagnosed regularly. We strongly believe that no matter how the message gets out there, it’s important to get it out there! We need to stop being upset if someone mentions cancer-related and not primary lymphedema. Instead, use it as an opening to talk about primary lymphedema also. We, the lymphedema community, need to get our stories out there and make them heard. One way we’re trying to do it is through a campaign to get lymphedema on the Ellen DeGeneres show! If you want to get YOUR story out there, make a 15 second video about why YOU want to see lymphedema featured on her show. Post it to all of your social media outlets with #LymphedemaOnEllen. We will make sure to help share it as much as possible. TOGETHER we can give voice to lymphedema and create a global movement! Love and respect always, Robin and Amy