Evelyn, as a teenager, and the oldest sibling, has a perspective of caretaking of her siblings and those around her that is unique to both her age at my original diagnosis (11) and her birth order. Now at 25 and living far away, she remembers the onion analogy and how helping sometimes is asking questions and listening.
Listen to a discussion with my friend and psychiatrist, Dr Julie Guthrie, about learning to put yourself first. Physicians with their background of being altruistic can get hung up on taking care of others. This is true for many other people as well. Listen as Dr. Guthrie and I discuss how to recognize when you need to put yourself first and how this can be of benefit to all of those around you.
One goal – end cancer! Well it’s Pelotonia week and I can say – last year was a blast and wishing all the riders this year the best. I will be back next year. I am a virtual rider this year if you care to donate to my ride: www.pelotonia.org/GratefulForEveryDay
My podcast this week talks about my own journey with chemotherapy, being allergic to chemo, port placement and other items I needed some education on this time around. The physician, nurses, and pharmacists who take care of you are also there to answer your questions. Feel empowered to ASK! Enjoy the podcast. I am past the half way line – just have heartbreak hill to get up! (Pelotonia riders into Gambier know what I mean!)
Through Entrepreneur’s Organization I have been able to meet some amazing entrepreneurs and members of their family from around the world. Today, I am with the Canadians!. Dan Lionello shares his journey with prostate cancer. He has two business ventures that I know of – one is Painted Picture -a way of moving your life in the direction you want it to go – by visualizing it. And using that visual to keep you moving towards your goals. The second is an Omnae.com – a global sourcing, supply chain and quality management platform. You can meet Dan on LinkedIn to read more about this. On top of these initiatives, he had prostate cancer. So – that means, yes he had the exam and then was given the diagnosis. Like so many others of us – he researches and reads on google what the journey may be – on top of using his doctors insights. With all of this information combined, he knew he wanted to approach this process with his own painted picture outcome and used neurolinguistic programming skills to help him stay positive and focused on the outcome he wanted for himself. Dan will take you on his journey to a return to health – which was four years in the making.
In the mean time this week, a friend, Jennifer Carroll, published a book with her and her family’s walk through life. They even learned to live while Phil was dying. Beyond Invicible is the book. This is a proactive health message book – please make your doctors appointments and get checked.. Phil’shad aggressive prostate cancer and his family lived their journey through this illness in the most positive light – and Phil is the most positive person I have ever met posthumously! Jennifer Carroll and her family embody that spirit as their legacy. Her book will fill you with gratitude and positivity. You can pre order her book to learn how to be positive, carry gratitude rocks and be grateful for all of life’s adventures.
Finally, a promotion for my favorite fundraiser for our local cancer hospital. The Pelotonia is in 9 days. Here is a link to my virtual ride this year. The research and patient advantages that have occurred in The James as a result of this fundraising effort in the last 9 years has been amazing to experience and appreciate. My podcast with Lisa Hinson addressed this. Here is a link to my fundraiser if you are so inclined.
As you may remember – I am lucky enough to be from a large family. We are scattered around the globe at this point – yet find ways to connect. My cousin Charlie recently lost his son Scott to brain cancer. Scott was an educator and coach.. I thank Charlie for sharing this most personal story and hope that Scott’s message sticks close to your heart. It does mine. Charlie recalls the range of emotions he went through when his adult son was diagnosed with brain cancer. He learned a lot about the man Scott had become and the effect he had on his students. Scott’s mantra to his students had always been “Be good humans,” and embraced “Choose happiness” during his time battling cancer. We are never too old to learn. Feel free to subscribe on your favorite podcast site, share, rate, and comment. If you find this content valuable, doing these activities helps others find it too!
There are very few days that someone can call the worst of their life – and losing a child is one of those days. Meet my friend, Eileen Caramela, who lived this day – weeks, months and years. Derek accidentally drowned and Eileen used the strength of friends and their caring to help her through. As this is now 13 years since this event happened – Eileen will help you through what to say, what hurts or doesn’t make sense to say, and what is helpful as the years go by and you have memories of her son. I appreciate Eileen taking the time to talk about the death of Derek and using this moment to help others – Thank you Eileen!
Well, the truth is – it has been a bit rough. The medication I have been taking to control the nausea is just not agreeing with me. I either am sleeping non stop and completely out of it, or I can’t sleep, or if I am awake I can’t think straight. So I guess it is a no go on that nausea medicine – olanzapine. I’d rather not be a zombie. The xray is my foot. As usual, I had great plans that I would be healed at 4 weeks (I swear this is what I heard the orthopedist say at my first visit). This is my foot yesterday – it is healing – but not healed. The great news is the weather is hot and I can swim. And, I can walk short distances.
I had the opportunity to talk to some other patients going through chemotherapy and realized there are a few resources I want to share.
What really works to keep you from loosing your hair: cold therapy. Polar cold caps is one company. Some chemotherapy infusion sites have a cap that circulates cold and does not rely on dry ice. Here is Mayo Clinic’s explanation and schematic on how this works. OK – so let me just say – cold can be magic for reducing hair loss – and for reducing fat! Follow the link to Timeless Skin Solutions if you want to know more about that!
The National Cancer Institute has a comprehensive site for all cancers if you want information about any cancer. Up to date is a great way to find out the latest on any therapy for any disease – including the latest on nutrition and other treatments outside of medications that have scientific basis for working. This would include supplements that I am taking to lessen the possible side effect of neuropathy – a painful sensation in my feet. This does require a subscription – but is worth the money for the sheer volume of what is available. The Cancer Support Community is also helpful for both patients and caregivers. Twitter is also becoming a place where influencers in the medical community are posting the latest research before it is even published.
Finally, if you want a thoroughly researched, connected and recommendations for your serious medical illness – Private Health is a company that for a fee (substantial) will gather all of your information on your illness, review all the literature and science and latest in genetics on your issue – and make recommendations. I have not done this – but if my situation was more dire, I would access this resource.
Here is my podcast on how I am doing – enjoy!
So, this morning I was asked how I am feeling. I thought I would let you in on the good and the bad. Chemotherapy was yesterday. I had an allergic reaction, noticed by my astute nurse, just prior to discharge. This means my infusions will run longer during the time that I am there, but as of this point won’t have to change chemotherapy drugs. I receive five different types of medicine for nausea. Here is how I feel:
Slightly buzzed, tired, nauseated and a really bad taste in my mouth from the chemo. That’s the real behind the scenes.
Also – good, Positive, another step closer to getting better. And grateful for everyone picking up the pieces of my life that I love and doing them for me or without me.
For the positive today: I will walk 1/2 miles today – a goal for my foot that hurts less since the fracture – and I think I can wear a pair of tennis shoes for the first time since the end of May. And I will get in the pool. Someone else will water my plants today and pick the blueberries and blackberries that have ripened.
Wish this is what I had planned: a great party celebrating cheese, Boska, my friend Martijn’s company, and a great night with friends in NYC. If I can’t be doing it – I can be remembering it!
Introducing you to Dr. Shikha Jain today on my podcast. Dr. Jain uses social media to help patients understand the latest scientific studies. She uses the platform to demystify and break down the important advances in oncology into understandable language.
Over the weekend, I had the opportunity to chat with a few friends and one of them brought up this study: https://nyti.ms/2LV9TvX which talks about certain groups of patients with breast cancer who may not need chemotherapy. It is exciting that social media can be used to get this information out to patients and can be found as early as studies are presented at conferences. We are moving into a time when scientific studies can be found online and the research brought into your doctor and discussed regarding the latest advances. Feel free to follow Dr. Jain on twitter at @ShikhaJainMD or follow me at @DrCarol . Twitter is a place where physicians are speaking out about the latest scientific based advances in medicine.
On a more personal level, last week I had a new medicine (for me) for nausea – olanzpine. This really helped with nausea but made it difficult for me to do much else. I felt jittery with this medication and my sleep has been off since I took this medicine. One day I slept 20 hours – other nights I could barely stay asleep for a few hours before needing to get up and move around. It is so hard to know if side effects are worth the lower nausea level. I keep a journal as a result to record how I feel during this chemotherapy process and would recommend others do that as well. It can help you and your physician sort out what is the next best step in relieving symptoms – or just living with them. I am now 1/3 of the way through treatment – and on my week off of chemotherapy it does not seem so long. During the week of receiving chemotherapy – it seems like an eternity! Thanks for all the continued support, emails, notes, facebook messages. I so appreciate it and I hope the introduction to Dr. Jain today helps anyone searching for medical information for themselves or a loved one! Episode #12 is linked on the side bar here. Subscribe to my podcast (three platforms are also linked on the side bar). Rate it, share it for others to benefit!