10th annual Mesothelioma Awareness Day

About a month ago, Cameron Von St. James that blogs at The Mesothelioma Cancer Alliance Blog, contacted me about promoting the 10th annual Mesothelioma Awareness Day.  His wife, Heather, is one of a few survivors. I love the blogging world because it connects you with other advocates and advocates are awesome, passionate people!

In 2005, at the age of 36, and only three months after giving birth to a beautiful daughter Lily Rose, Heather Von St. James was diagnosed with pleural mesothelioma. Upon learning of this life-altering diagnosis, Heather, together with her husband Cameron, embarked upon a search to find the best mesothelioma treatment care available. Their search eventually led them to Dr. David Sugarbaker, a renowned mesothelioma surgeon at the Boston based Brigham and Women's hospital. Dr. Sugarbaker recommended a relatively new surgical procedure called extrapleural pneumonectomy, a groundbreaking treatment option offered through the International Mesothelioma Program. Although there were some risks associated with the procedure, it also carried promise for the best possible outcome. Heather, with full support from her husband and family, agreed to have the surgery.
Today, Heather Von St. James is an eight-year mesothelioma cancer survivor and continues to provide unending inspiration to mesothelioma victims around the globe. She carries out her mission to be a beacon of hope for those afflicted with mesothelioma by sharing her story of faith, love and courage both as a keynote speaker at conferences and through social media forums. (http://www.mesothelioma.com/blog/authors/heather/bio.htm)

Cameron is husband to Heather Von St. James, survivor advocate for the Mesothelioma Cancer Alliance, and father to Lily Rose.  When faced with the very real possibility of raising Lily on his own, he fought alongside Heather in her battle with mesothelioma. It was his determination and refusal to compromise on doctors or treatments that led them to Boston to receive radical surgery from esteemed mesothelioma surgeon, David Sugarbaker. Heather continues to thrive 8 years later. (http://www.mesothelioma.com/blog/authors/cameron/bio.htm)

Watch Heather's story in her own words.  This is truly an amazing story of resilience and grace in illness:

Mesothelioma.com states that Mesothelioma is an aggressive cancer affecting the membrane lining of the lungs and abdomen. Malignant mesothelioma is the most serious of all asbestos-related diseases. The primary cause and risk factor for mesothelioma is exposure to asbestos.

Making a correct mesothelioma diagnosis is particularly difficult for doctors because the disease often presents with symptoms that mimic other common ailments. There is no known cure for mesothelioma, but treatments such as surgery and chemotherapy have helped to improve the typical mesothelioma prognosis. Pleural mesothelioma (affecting the lung’s protective lining in the chest cavity) represents about three quarters of all mesothelioma incidence. Peritoneal mesothelioma, which affects the abdominal cavity, and pericardial mesothelioma, which affects the cardiac cavity, comprise the remainder.

According to David Rice, MD, a cardiothoracic surgeon and nationally known mesothelioma expert who practices at the University of Texas MD Anderson Cancer Center in Houston, TX, the very rareness of the cancer—only about 3,000 people a year are diagnosed in the United States—makes it difficult to run the kind of research studies needed to compare treatments and determine the ideal therapy at each stage of the disease. “There isn’t a lot of evidence-based science in this disease,” Dr. Rice admits. So when his patients ask him what the best treatment is for the disease, he tells them what we tell you in this section, adding that “we don’t have a reliable cure for this disease.”

 Mesothelioma is a form a cancer with a notably poor prognosis; mesothelioma life expectancy following diagnosis ranges between eight and fourteen months. The primary reason is the lengthy mesothelioma latency period as well as the fact that early mesothelioma symptoms are indicative of numerous other respiratory diseases as well, often delaying a correct diagnosis. While Stage 1 or stage 2 mesothelioma is often potentially curable, Stage 3 and stage 4 mesothelioma is not; such patients are often relegated to palliative treatments to relieve symptoms and restore quality of life. Mesothelioma prognosis is officially determined by a standard measure known as the relative five-year survival rate. This number indicates how many patients are still alive five years after being diagnosed with the disease. Currently, the relative five-year survival rate for mesothelioma is about 10 percent, a number that is significantly higher than it was a few decades ago. The one-year survival rate has also improved throughout the last 20 years or so and now sits at approximately 40 percent. Nevertheless, the overall mesothelioma survival rate remains poor. ( http://www.mesothelioma.com/mesothelioma/prognosis/survival-rate.htm#ixzz3EHm1mVhz)

Heather's survivor story is one that beats so many odds.  Today on the 10th annual Mesothelioma Awareness Day, I urge you to educate yourself and check out all the facts about Mesothelioma at Mesothelioma.com.

Gratitude

I had my appointment with Dr. Sosland today.  In case you are counting, yes this is my fourth cardiologist. As a quick recap, the first one was a pompus ass (although really, really grateful to him for saving my life!).  The second one I loved but he went to practice in Topeka.  The third one I liked pretty well, but her office was not warm and welcoming.  Her staff was not friendly and it just wasn't the place for me (if you are a doctor and reading this, your staff or billing office is really important to your patients.  If they suck, you lose patients).

Dr. Sosland's office was warm and welcoming as soon as I walked in. The front desk staff was awesome as was the MA, PA and Dr. Sosland herself.  I have been dreading this just as I do before every cardiologist appointment--what if I have to go to the hospital, what if I have to have CABG? These things fill me with dread, but  I suddenly did not dread it so much when I walked in her office.  I have found my forever cardiologist home.  Thanks to my heart sister Julie for the fabulous referral!

I have struggled so much with depression and anxiety and I was so comfortable with her talking about it.  We talked about my not sleeping.  I could not stop the tears as she told me I could sleep easy because I am well.  Of course she did not mean well from heart disease, but well from my heart attack.  My EKG was good, my blood pressure was good and my ejection fraction is good.  We talked about the 8 week fitness challenge I am doing with my jr. high friend Monica.  She said that if I keep that up, the depression and anxiety will take care of itself. I do know this to be true, I feel hopeful about sleep tonight. She also asked me if I had ever read How to Prevent and Reverse Heart Disease by Dr. Caldwell Esselstyn.  That seals it, we are kindred spirits!  I told her I completely believe in this but it is so hard to do.  I told her that I was strictly following this immediately after my heart attack but that it is so hard to follow. I explained that when I went to the cath lab the second time giving me the total of five stents in my LAD, I figured if I had to go back to the cath lab, I was going back to meat and dairy. She reminded me that my trip back to the cath lab was not due to anything other than the scar tissue build up from the first stenting. 

So, I had a flood of happy tears and had them run down my face all the way to the mall.  Of course, once I got to the fabulous sale at Dillards, the tears were because they had such a fabulous sale going!  I was originally going to work after my appointment, but changed course and decided to revel in the good news and let the stress relief last the entire day. The stress will be waiting for me to walk in the door tomorrow--this I know for sure!

My third heart anniversary is approaching and I have so many things to be thankful for.  I have as clean of a cardiac bill of health you can get for having five stents in your LAD and so many fabulous people to share this with!  So, on October 28th, we celebrate!  We celebrate life, gratitude, love and bowling.  I get to celebrate knowing my work with the AHA Kansas City educates the women in the Kansas City area.  I have been named the Social Media Chair for the next two years--quite an honor as this is a new position.  If you follow me on Twitter, @skinnybitchchro , you are shocked, I'm sure:)  If you are friends with me on FB, shocked as well;)  My story is up on the AHA KC website: Jodi Jackson.  I love that social media provides a story such a far reaching audience and I hope far reaching education!

I leave you tonight hoping you can feel the gratitude for life that I feel tonight.  I hope you don't have to have a major medical crisis before you get to feel it.  It is a very powerful thing. 

2014 Invisible Illness Week

I have been so busy that I did not realize that it was Invisible Illness Week.  Luckily, Carolyn over at Heart Sisters posted her Invisible Illness Week post yesterday.  It came across my phone and I knew I had to do the Invisible Illness Week Meme again this year--30 Things About My Invisible Illness You May Not Know.

My heart attack was in October of 2011 and by the first Invisible Illness Week in September of 2012, I still thought this didn't apply to me.  It took a long time to really realize that this invisible illness week thing would actually apply to me.  I can clearly remember a nurse coming in and talking to me about managing heart disease before they moved me out of the CCU.  I know I looked at her like she had lost her mind because to me I'd had a heart attack, it didn't kill me so now I was better.  I had no idea what the diagnosis would mean for me in my life. I know now exactly what the diagnosis means and that it is, indeed, a lifetime invisible illness.

30 Things About My Invisible Illness You May Not Know

 1. The illness I live with is heart disease post widowmaker.

 2. I was diagnosed with it in the year 2011.

 3. But I had symptoms since: Looking back probably since I was pregnant the second time.  The horrible indigestion and the dentist thinking I was crazy constantly complaining of toothaches when I didn't have a dental issue I know now were early signs of heart issues.

 4. The biggest adjustment I’ve had to make is learning that I really am sick.  Sometimes I try to ignore that and that is really not the best idea I've ever had!

 5. Most people assume that because I don't look sick that my cardiac event was not very major.  It was major enough that only 20% of women survive the kind of heart attack I had.

6. The hardest part about mornings are remembering to take my medicine. This answer has not changed since last year! Even if I put them in a day of the week pill box, I still forget to take them, get halfway down the street on my way to work and have to turn around.  Just yesterday, I put some in my desk at work so I don't have to turn around.  It is hard to turn around when you are a mile from work and have driven 50-60 minutes to get there!

7. My favorite medical TV show is: Royal Pains

8. A gadget I couldn’t live without is my cell phone.  I do social media for the AHA KC Go Red Ambassadors.

9. The hardest part about nights are worrying that I won't wake up in the morning.  I cuss that first cardiologist who told me that if I had laid down to see if I felt better I would have never woken up.  I know he was well meaning and trying to stress to me that calling an ambulance was the reason I lived.  The result though, even three years later, is that I lay down to go to sleep sure my next cardiac event will be while I am asleep and I won't ever wake up.  I may have to break down and ask my cardiologist for some sleeping pills!  This has been the reality of nighttime every night for the last almost three years.

10. Each day I take 9  pills & vitamins.

11. Regarding alternative treatments I strongly believe they work great in conjunction with traditional medicine. I use both traditional and alternative treatments.

12. If I had to choose between an invisible illness or visible I would choose visible.  I can't remember what I said last year but this year I think visible would be better.  Sometimes when I don't take the stairs I can see the looks at the office.  Truth is, I never take the stairs on days I have chest pain.  I have words in my head for those that give me those looks and most of those words contain 4 letters.

13. Regarding working and career I kid myself most days.  I have a high stress job but I try to lie to myself and say it is not.  It affects my health because all stress affects your health.  I have started five days a week exercise --Zumba, Yoga, Pilates and Barre.  I can tell my stress is better controlled this way.  I am good at what I do and I love my job. This means I need to  control my stress  so my doc doesn't make me quit working.

14. People would be surprised to know that hmmm....I am a pretty open book so I am not sure there is much that surprises anyone.

15. The hardest thing to accept about my new reality has been that it is my new reality.  Most days I wouldn't give it back but some days I just want to forget that heart disease is my reality.

16. Something I never thought I could do with my illness that I did was speak publicly.  I guess I have more confidence about public speaking because I know the subject so well.  It is kind of hard to screw up your own story:)

17. The commercials about my illness have finally started to include women.  Yay!

18. Something I really miss doing since I was diagnosed is sleeping.

19. It was really hard to have to give up bad food.  I gave it up and lost some significant weight and then depression hit.  I gained it all back plus and now have to start the process over.  Giving up quick, processed really bad for me food has been harder the second time around.  Especially since my kitchen hates me (and trust me the feeling is mutual!) and I don't really spend any time in it.  I missed any form of domestic gene that most women get!

20. A new hobby I have taken up since my diagnosis is an old one--photography.  I went back to my hobbies when I realized I really do not have endless days to enjoy them. I love taking senior pics. This time of year in Kansas is amazing--sunflowers!  I am meeting two seniors at the fields on Sunday as well as one of my favorite co-workers for some family pics. This makes me smile.

21. If I could have one day of feeling normal again I would really cherish it and I would sleep:)

22. My illness has taught me that you should really live every day of your life--don't waste it and don't leave things unsaid.

23. Want to know a secret? One thing people say that gets under my skin is "I about had a heart attack."

24. But I love it when people ask me about what happened to me and ask me to educate them on signs and symptoms of heart attacks.

25. My favorite motto, scripture, quote that gets me through tough times is Stop Chasing Ordinary.

26. When someone is diagnosed I’d like to tell them to take their time and process what happened to them.

27. Something that has surprised me about living with an illness is that I am much stronger than I ever thought I could be.

28. The nicest thing someone did for me when I wasn’t feeling well was stay away.  I don't like visitors when I an not feeling well. I find having been in the CCU twice in  the last three years that the second time was better because I didn't have anyone in my hospital room.  The worst thing is to feel like you have to be awake to entertain visitors when you are really sick and if you are in the CCU, generally you are really sick.

29. I’m involved with Invisible Illness Week because it is a great exercise to remind myself of both the good and bad.

30. The fact that you read this list makes me feel the same as last year. It makes me feel like I lived for a reason.  I lived so I could educate all of you.   Please make me the voice in the back of your head when you think something like this can't happen to you.