Cancer Related Information
If you are a friend and/or a follower of this blog, you know I was invited to travel to Memphis, TN last week to learn about the St. Jude Children’s Research Hospital. Because of my own personal experience with cancer, this blog and my other social media outlets, they asked me to join 11 other bloggers from around the country to learn more about ts history, its mission and the possible ways we all can do our part to end childhood cancer (Adult and Childhood cancer!). There is so much I want to share from my three day learning adventure. This is the third year of their blogger tour and in total, they have about 70 bloggers nationwide helping spread the word through their amazing Blogger Ambassador Program.
Here are some high level, meaningful facts that resonated with me about St. Jude:
Families never pay. – If you are a patient at St. Jude Children’s Research Hospital. you will never receive a bill. They do bill insurance but the family will not pay co-pays, lodging costs, food etc. Even if your child has to stay for an extended period of time. I know personally how stressed out I was thinking about the financial burden Scott’s cancer treatment was going to be. We had great insurance fortunately — but think about it – I was already overwhelmed and emotional about his cancer diagnosis in general. Add to that — how am I going to pay for this? Knowing that you would do anything to save the child/husband/family member you love. And then to walk into St. Jude and be told – don’t worry. We got you. First disbelief, then relief and you can focus on the big stuff – getting your child well.
Donations support the hospital. – Last I checked, 81 cents of every dollar donated goes directly towards research and treatment. Based on the info they shared with us, it costs $2.2 million dollars a day to run the hospital and research facility. No non-profit can claim 100% of their donations go directly towards their mission because there are always costs associated with running any non-profit. Considering what a large organization St. Jude Children’s Research Hospital is, 81 cents out of every dollar donated is pretty impressive.
St. Jude Children’s Research Hospital is making a difference. – When they opened in Feb 1962, their overall survivor rates were under 20%. Today, it’s around 80%. They also study other diseases like malaria, sickle cell disease to name just a few. Clearly, they are definitely making a huge impact that resonates globally. Their research is released to the public and freely available to any research facility, doctor, scientist and/or patient.
Danny Thomas – The story behind the building of St. Jude Children’s Research Hospital is inspiring. Mr Thomas made a vow and he kept it and enlisted countless friends and visionaries to help. He believed strongly “No child should die in the dawn of life” and who in their right mind would disagree.
They pay attention to details. – Here are few of the services and details I noticed:
- They have an on site school so kids can keep up with their school work.
- They have their own gardens so they can prepare food using the fresh product (farm to table) as much as possible. And when not possible, they work with the local CSA to grow the crops and offer a Farmer’s Market monthly on site.
- Their utensils, etc are as eco-friendly as possible.
- They have Child Patient Specialists to work with the patients to help them understand what’s going on in an age-appropriate way.
- Legacy Services – End of life is unfortunately something that does happen – they offer services and legacy keepsakes to help.
- Milestone Events – graduations, proms, dances, parties including No More Chemo parties!
- Wagons – when possible, the patients are wheeled around in red wagons instead of wheel chairs – keeping some of their childlike magic in tact.
- The Hospital – obviously it’s state of the art, but it doesn’t smell like a hospital. It may be because of the high end air filtration systems, but it was nice to not be inundated with that sterile, alcohol smell common to most medical facilities. And the walls are adorned with colorful, gorgeous murals and large images of their patients. It’s a warm, inviting place to be — which is awesome AND surprising since it’s not like the hospitals I have seen or visited before.
This trip meant the world to me – Seeing sick kids is hard but I was able to meet some amazing people (bloggers, St. Jude Children’s Research Hospital staff, families, people from Memphis to name a few) and I left there feeling hopeful and inspired – ready to figure out how I can do my part to help. The topic of cancer has always been threaded throughout this blog — so helping spread its important mission and work fits in perfectly. I will be sharing more about my trip, St. Jude Children’s Research Hospital, and ways we can all help, so stay tuned…
I’m still processing the St. Jude Blogger Tour. It was a heavy topic but I came back feeling hopeful, inspired & grateful. My new blogger friend Melissa Fenton talked about “turning guilt into gratitude” as we head back to our families and look at our healthy kids. Be grateful that we have healthy kids that can live their normal lives. I am taking that to heart and will do my part to end childhood cancer. I am even more forever changed..
I will share my entire experience in the next week — as it was full of information, emotions, fun and hope and what being a St Jude Ambassador Blogger means –including all the programs and ways people can get involved.
Childhood Cancer Awareness Month
Next month is Childhood Cancer Awareness Month and there are a ton of ways to help, including a walk/run in many cities around the country. To search for an event in your community use this link: Find an event near you or Donate.
We dropped the kids off for their yearly sleep away camp. Camp Kesem is a week long camp that serves children who have lost a parent to cancer, have a parent undergoing cancer treatment , or whose parent is a cancer survivor. The camp is an opportunity for kids to just be kids and to hang out with other kids who have experienced the life altering effects that cancer has on an entire family.
While Scotty is now 8 years cancer free, the long term effects are still present and the changes within our family are forever there. HB didn’t really want to go but we explained that in many ways, it’s important for other kids to see different perspectives of cancer and whether they see it or not, our kids were affected forever.
While they are at camp, I am heading to Memphis, and am excited and honored to be given this opportunity. The agenda over the next three days is full from 9a – 9p. They have us meeting with families, doctors, doing projects with the kids, touring the hospital, meeting with the Communications department and finding out being one of their ambassadors and what that entails. I will be sure to share some of each day’s events while i am gone if i can. But as a I said, they have us booked all day, learning.
And last week, my brother and his two girls were here for the week. It’s been a very long time since I had toddlers in my house. It was quite an experience –and a lot of work. I forgot all the demands and attention they require. They were adorable and we had a great time. The most popular member of our household it seemed was Trooper. The girls loved him and he loved them back. It was awesome to see how gentle and affectionate he was to them. As big as he is, he can be gentle and playful. When they left, he moped around the house for a day or so missing them. He’s now back to normal – thank goodness!
Planning for a Family Visit with Toddlers
Their week long stay had me playing tour guide, so I thought I would share how I handled making plans for them knowing that because of their ages (2 and 5), we needed to have fun, be flexible, and get a taste of the beauty of Virginia (aka “grassy land” – which is what my 5 year old niece calls Virginia)….
I wanted to find events/attractions that would not take all day either — because as anyone that has had young kids — their attention spans are limited and they need naps. Here’s what I came up with and then also planned pool time, walks, and art activities at home. I was pretty pleased with myself for being so organized and planning activities that really worked out well for everyone…
|National Aquarium||Baltimore, MD||Adults: $39.95
Children (3-11): $24.95
Seniors (65+): $34.95
|National Harbor is a great place to take the kids –they can run around and the aquarium also offers the chance to touch jelly fish and other sea creatures on the 2nd floor.|
|Smithsonian Butterly Pavilion||DC/Smithsonian||Adults: $6.00
Children (2-12): $5.00
Seniors (65+): $5.50
|Butterflies are EVERYWHERE in this small enclosure. The kids loved it.|
|Great Country Farms||18780 Foggy Bottom Rd, Bluemont, VA 20135||Weekdays: $8/Child & $10/Adult kids under 2: FREE||Ride the Cow Train.
Solve the giant Mazes.
Grab some air on the Pumpkin Jumping Pillow.
Make friends with the Barnyard animals.
Hook the big one at the Fishing Pond.
Much, much more!
|FLY DANCE COMPANY||Wolf Trap – Theater in the woods||$10.00/Ticket Thursday, August 4 at 10:30 am||So you think you can dance? Check out this high-energy, gravity-defying dance crew as they mix hip-hop, pop n lock, and modern dance with colorful costumes and comic delivery. Kindergarten through 5th grade.|
|Great Falls Park||Great Falls/Mclean VA||8.00 Park Entrance Fee||
Scenic National Park, with hiking and climbing on rocks.
I have some exciting news to share. Yesterday evening I invited to be a special guest for a St. Jude Blogger Tour – an exciting and educational three-day experience in Memphis, Tennessee this coming August where I will visit St. Jude Children’s Research Hospital, tour the facilities and witness first-hand the holistic care doctors, researchers and staff provide to their patients.
I am beyond honored and speechless to be offered an opportunity like this which includes learning more about how St. Jude Children’s Research Hospital is leading the way the world understands, treats and defeats childhood cancer and other life-threatening diseases. They are also generously covering my expenses for the trip! I have confirmed my availability and am waiting for additional information about this three day event.
I have been blogging regularly for over 8 years now, focusing on health, wellness and family inspired by my husband’s experience with colon cancer. I started blogging to keep people in our lives up to date on Scotty’s progress and treatment and during that time I found a passion for living healthy and fit. Live Fit and Sore was born out of that original blog and I haven’t looked back. I share the info and experiences to help others find support and motivation to make changes in their own lives, but more importantly, to keep myself focused on health and wellness. It’s a passion of mine and it has introduced me to the most amazing people and has brought me opportunities that I could not have even imagined.
I have no idea what to expect but I have always respected the St Jude’s Organization and am so beyond touched to be invited. I will share the details of my trip when they are confirmed.
- “She put on a lot of weight”
- You Asked: Are All Calories Created Equal?
- Why Some People Handle Stress Better Than Others
- How to keep girls in the game after puberty
I’ve been putting off reading Sheryl Sandberg’s commencement address to the 2016 UC Berkeley grads – knowing it would bring out the feels. I read it this morning to help fire up some inspiration – sure enough, it hit me just like I expected…
The entire speech is poignant, funny and meaningful, but here’s what resonated with me the most…
“when life sucks you under, you can kick against the bottom, break the surface, and breathe again. I learned that in the face of the void—or in the face of any challenge—you can choose joy and meaning.”
‘Finding gratitude and appreciation is key to resilience. People who take the time to list things they are grateful for are happier and healthier. It turns out that counting your blessings can actually increase your blessings. My New Year’s resolution this year is to write down three moments of joy before I go to bed each night. This simple practice has changed my life. Because no matter what happens each day, I go to sleep thinking of something cheerful. Try it. Start tonight…”
‘Build resilient communities. We find our humanity—our will to live and our ability to love—in our connections to one another. Be there for your family and friends. And I mean in person. Not just in a message with a heart emoji.’
Scotty’s cancer battle profoundly changed me. And, while I do at times find myself getting dragged under by the minutiae of life, I try my hardest to focus on being thankful and choosing joy. It’s about perspective – my life could be a lot worse as I found out. I choose to be thankful and look for the meaning and joy in every day. It sounds schmultzy, but it’s true. Life is way too short to hold onto anger, be resentful, let fear control you or hang out with toxic people.
Thank you goes out to Ms. Sandberg for sharing her very personal, intimate experience with the world. By sharing it, she is helping others find meaning in their challenges. I’m glad I finally read it – it was definitely worth it.
Have you heard of the Mediterranean diet? Here’s the basics…
- Eating primarily plant-based foods, such as fruits and vegetables, whole grains, legumes and nuts
- Replacing butter with healthy fats such as olive oil and canola oil
- Using herbs and spices instead of salt to flavor foods
- Limiting red meat to no more than a few times a month
- Eating fish and poultry at least twice a week
- Enjoying meals with family and friends
- Drinking red wine in moderation (optional)
- Getting plenty of exercise
Recent research has shown that eating this way can cause weight loss and help prevent heart attacks, strokes, type 2 diabetes and premature death: Science Daily: ‘Mediterranean’ diet linked to lower risk of heart attacks, strokes in heart patients.
“A ‘Mediterranean’ diet, high in fruit, vegetables, fish and unrefined foods, is linked to a lower risk of heart attack and stroke in people who already have heart disease, according to a study of over 15,000 people in 39 countries around the world. The research also showed that eating greater amounts of healthy food was more important for these people than avoiding unhealthy foods — a ‘Western’ diet.”
In addition to lowering the risk of heart attack and stroke, the Mediterranean diet is also associated with a reduced incidence of cancer, and Parkinson’s and Alzheimer’s diseases. Women who eat a Mediterranean diet supplemented with extra-virgin olive oil and mixed nuts may have a reduced risk of breast cancer.
If you look at the basics of this approach, you can call it whatever you want. It’s eating healthy: not eating a lot of processed foods and exercise! (I’m sure many of us love the drinking red wine part!) No shockers, no surprises. Most if not all major scientific organizations encourage healthy adults to adapt a style of eating like that of the Mediterranean diet for prevention of major chronic diseases.
When I am on point, this is very much how I eat – although I do use Kerrygold butter and don’t eat legumes often. I am also gluten and dairy free (minus the butter!) for sensitivity issues Through trial and error, I have found that Dairy causes eczema and congestion for me and gluten seems to cause me gut and fatigue issues. So, when I do partake in eating them – it’s after careful deliberation on the pros and cons of what’s being eaten.
Want to learn more? Mediterranean Diet 101: A Meal Plan That Can Save Your Life
Even though David Bowie was as far removed from my real life as possible, waking up to the news of his death from cancer caused my heart to sink. I wouldn’t even say I was a huge fan of his music other than an appreciation of his talent and art – but to me, he represented the freedom to be different, to reinvent yourself any time, and how to live life on your own terms. He was a part of the fabric of my youth– the 80’s music scene. Bowie, Queen, Duran Duran – huge musical influencers during the eighties.
Why do deaths of icons hit people so hard?
I think it’s a reminder of the passing of time and the realization that we are getting older, even though it feels like yesterday. Cancer hits everyone. He was 69 years old: way too young to die no matter how. But cancer doesn’t discriminate. You can be famous, rich, kind, amazing or poor and anonymous. Cancer doesn’t care.
Bowie was an artist – writer, creative genius, actor, musician. I love that he was also able to see the humor in his legacy:
He just released his final album last week – and like his musician friend Freddie Mercury, his final video was a parting gift and a goodbye on his own terms.
David Bowie’s last release, Lazarus, was ‘parting gift’ for fans in carefully planned finale : The producer of Blackstar confirms David Bowie had planned his poignant final message, and videos and lyrics show how he approached his death
It was a stressful morning – Scotty had his regular colonoscopy scan which should be no big deal at this point. It’s a routine scan that he has to have every three years not only because he had colon cancer, but turns out he is a polyp maker. While we were in the pre-op room, waiting for the doctor to call for him, the feelings started building inside. I started to tear up and fill with anxiety which then started to make Scotty uncomfortable. It’s not that there was any inkling that anything was wrong, but it brings up a lot of PTSD-like feelings. The memories of being in the same situation 7+ years ago when I heard he had cancer. I took some deep breaths and told myself it’s all OK -it will be OK and regained control of my emotions. The last thing I wanted to do was upset Scotty as he headed in to get a scope up his hiney. He had not really eating in two days, and no coffee – he didn’t need to see me bubble up with fear. As they wheeled him away, i stopped in the hallway to watch until he was out of sight. The little voice in my head telling me it was all going to be OK.
An hour or so later, he was wheeled back into recovery laughing with the nurses as he was hooked up to the monitors as he recovered. Dr. Crenshaw explained they found some polyps, which he removed and are being sent for a biopsy, but saw nothing concerning and to come back in 3 years or so. Wheww – I took a deep breath and instantly felt lighter. I can’t explain the feelings stuff like this bubbles up – it’s a reminder that life can change at any minute and be ready.
As I waited for Scotty’s procedure to be done, I was reminded how important it is to do what you can to stay healthy. While I was sitting in the waiting room this morning, I looked around the waiting room and noted what some of the people waiting were eating – most of were eating shit food. Sugar filled granola bars, a bag of chips and one particularly large guy was sipping on an over-sized Coke. Here we are in a hospital waiting room and people are eating shit. Maybe they don’t care, maybe they don’t know how to eat better, maybe they do eat better and this is a once in a blue moon snack. It was just an observation that caused me to pause…
The week started off great, with a clean scan – I can handle whatever the rest of the week brings and so can you!
I’ve been very retrospective and contemplative lately – thinking through things that have and are happening in my life. One of the things I have been doing, healthy or not, is revisiting some of the blogs I used to follow during Scotty’s cancer treatment. I’m not sure why I revisit them. Maybe it’s to remind me how fortunate we were to catch his colon cancer early. Maybe it’s to remind me how precious life is. Maybe it’s to remind me that there are many, many people out there with bigger, life and death decisions they are dealing with. Maybe it’s the real knowledge you can glean from their journey. Maybe it’s all of the above and more…
A few of the blog authors’ have died – my stomach drops when I revisit a blog and find the most recent post is their obituary. The blogs I followed were written by people who wrote so eloquently about their journey and held onto their strength until the very end.
It’s always a reminder to me that cancer happens to real people, rich, poor, young and old. It doesn’t discriminate.
I read a recent blog post from Julie Yip-Williams: My cancer fighting journey, who is battling Stage 4 Colon Cancer that really struck me…
I had grown over the months from the belligerent warrior who was determined to beat this cancer to the more contemplative philosopher who seeks above all else to find meaning, peace and acceptance in a life over which I have little control. Cancer, at least for me, truly is a journey that makes me question and analyze all my beliefs about myself (as in whether I am strong or weak, brave or cowardly), about the existence of a higher being and its role in the affairs of mankind, about commitment and love (as in how far will I go to stay alive for my family), about the meaning of my life and life in general, about death and what awaits. If you are open to these inevitable questions that only something like incurable cancer can force into the forefront of your mind, if you allow yourself the time and patience to mull over these complex, baffling, painful and impossible queries, the journey both will change you (for the better I believe) and make you more of who you have always been.
If you want to learn more about Julie, who is a prominent NYC attorney, here’s a good article: One Story: How The Challenge Of Colon Cancer Stage 4 Is Making Julie Yip-Williams Better, Smarter, Kinder
This month is Breast Cancer Awareness month. A recent article I came across had the title Celebrate Breast Cancer Awareness. The use of the word celebrate seemed odd to me. Real women and men are battling right now and while they celebrate their personal victories, the fact that they are dealing with this horrible disease at all is not cause to celebrate. We shouldn’t celebrate by talking about boobs and wearing pink. Instead, let’s figure out a way to make breast cancer detection methods easier and cheaper to access, learn ways each of us can influence brands and countries to limit exposure to the harmful chemicals that are invading our daily lives, and become more educated and aware of the ways each one of us can prevent cancer ourselves.
I was inspired when I read about football player, DeAngelo Williams, offering to pay for mammograms instead of wearing pink as a way to honor his mom who died from breast cancer. What an honorable way to make a true impact as opposed to just wearing pink or forgoing a bra for the day. Not every can afford to do that kind of gesture of course, but it certainly is leading by example. Maybe more professional athletes will learn from his actions and start putting money where their mouth is.
This morning we made the drive to the Lombardi Cancer Center like we did so many times during Scotty’s colon cancer treatment. It was odd that today’s appointment was on a Tuesday, because it was every other Tuesday for months after his surgery, that we settled in for all day chemo appointments.
The hospital is undergoing renovation, so it didn’t look the same but the feelings came rushing back all the same. When we wen to to check in, the lady asked “have we really not seen you since 2011?” We smiled and headed towards the back to take a seat.
We didn’t wait long before we were ushered into the exam room and a fellow, who is a doctor in a period of medical training after completing a specialty training, greeted us. Each time we went in for chemo, we experienced a different fellow before seeing Dr. Marshall. Lombardi is a learning hospital so it’s expected.
After a bunch of questions from Dr. Marshall – we were told to get out of there! We don’t need to come back. Scott was advised to continue seeing his primary doc regularly and get his colonoscopies as recommended. He has one scheduled for December already!
We hugged, took a SEVEN Year pic, and said our goodbyes. Before we left the hospital, we stopped by to surprise our amazing nurse, Mercedes, who helped us get through all of our chemo sessions years ago. We found her at the front desk on the 5th floor and as she turned around, I could tell she didn’t know who the heck I was. But, once she saw Scotty, it was all over. Seeing the huge smile on her face as she came rushing over to hug us both warmed my heart. She asked about our kiddos, and as I showed her their first day of school pics, it occurred to me that she hadn’t seen them since they were 4 and 6 years old. We do send a holiday card each year but other than that — time just goes by.
Scotty had his surgery August 2008 and we began his chemo seven years ago this month. So much has changed in our lives, I wrote this paragraph Feb 2011 and it still holds true…
I haven’t spoken much about our cancer journey lately – not because it doesn’t continue to color everything we do, but more so because we are moving on – living our ‘yes we had cancer‘ life. Moving on doesn’t mean that there aren’t times when the reality of what we have and are still going through doesn’t come back at us like a Mac truck.
As we drove back home, we both let go of the breath we were holding…