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.
@ShikhaJainMD is back sharing an original article on this topic in the New England Journal of Medicine by Dr @ShashShillcut and @JulieSilverMD . She offers great advice on women’s topics for all women in the workplace and has her own facebook group for women in dual physician marriages. Please contact Shikha Jain MD if you are interested in joining this group. Finally we discuss mentors and the use of mid level extenders in our practices. Enjoy this episode! Dr. Jain is also sponsoring a meeting at Northwestern. Sign up if you are interested.
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!
Maeve shares her unique perspective – and also may make you cry. Beware of our StoryCorp type episodes. This week is a chemo week and I slept 20 hours yesterday. I find the more I sleep, the less I notice the side effects. But I am groggy and tired and nauseated and have had a bad taste of metal in my mouth. If my foot wasn’t broke I might walk 1/2 mile with one of the dogs and a young adult. I had a great meal from a neighbor cooked at her home on Sunday. Thank you Dianne, Steffi, and Addie. It was almost like a pre-chemo party. Love those kind of evenings. Now 1/4 of the way through. I also spent some great time with old friends from my “Return of the Masterminds” and allowed them to inspire me – to write a book before this time next year.
My post is a bit delayed this week – as last weekend I broke my foot. I would like to have a clever, fun story – like, I did this dancing on a bar and I fell off. But this would not be true – I simply stepped off the sidewalk, my foot twisted under me and I fell gracefully to the ground. Thus the fracture I have is known as the dancers fracture. Thank you to Orthopedic One for your care and diagnosis and the walking shoe!
I hope you enjoy this week’s podcast. Dr. Joseph Hofmeister joins me and I have the link to his website on mine – so you can find his resources easily. Dr. Joe makes the diagnosis of cancer easier for his patient as he takes the complicated medical jargon and makes it understandable for his patients.
I am frequently asked did the diagnosis of cancer scare me – and I would say for about a hot two seconds. The first was – how will I tell my family and will they be ok – and the second was what will the treatment do to me? I never had the fear of not knowing the medical jargon. I knew the system I was entering and was comfortable that the challenges I might face in the system, I could deal with and get through. Dr. Joe helps all of his patients, and anyone who reads his book or engages with him on his multiple social platforms, to make this giant leap of knowledge and join him on the other side. I so appreciated the time Dr. Joe gave to me for this podcast and I hope you do as well – and find value in what he shares!
Enjoy the photo of our daughters at summer camp – Camp Jeanne D’arc – a most beautiful, empowering and peaceful place on this earth!
That is so true. Organic pea soup with mint and some cream of broccoli soup have been excellent as well. Thanks for all the chefs who stopped by as Maeve recuperated from tonsillectomy. I do believe her pain, discomfort, and misery were well beyond any post operative discomfort that I had. She has had the opportunity to read on line that women who go through childbirth say the pain scale is the same – just not as long to have a baby. Maeve does babysit – she she realizes when childbirth pain ends new issues arise that last longer than postoperative pain. Downtime always give one time to wonder – so she is wondering if she would have potential in real estate. I am sure she will reach out to Laurie Elsass and my frieds Deb Goldach and Brad Weatherford to get some insights and a path forward on this.
In the mean time, I had chemo yesterday and Owen came with me. That is such a comfort to have one of my peeps with me. Of course, another lively patient, brought 4 of her friends and it was like a kitchen klatch. They didn’t mind us joining in occasionally – so a bit of a party at chemo! Got to embrace the good stuff. I spoke with the pharmacist and we went over alot of options to help with five days of unremitting nausea. We added another long lasting medicine yesterday and discussed a few others. All the medications in the phenothiazine category – I have had great practice with in three pregnancies that had nine months of hyperemesis. So even some of the new more powerful antiemetics are out. We discussed using the erythromycin family of medications and azithromycin (known as zpack) is from along ago study that helps with gastric emptying. This seems to add to the nausea in that gemzar slows everything down – so we are going to try this. Also more ativan and that seems to be helping today. No appetite but nausea at a mimimum. Physical movement except between chair and kitchen is about the max of efffort that prevents nauses escalating for me.
Owen left to go to work before chemo ended – it was a long session yesterday – and Lisa Williamson brought me home – remember, it takes a village. She stayed and heated up soup for Maeve and helped her settle down more.
OK – post tonsillectomy recommendations: Liquid Tylenol with codeine if possible – easier to swallow – may need up to 1 liter but can be dispense in 2 500ml bottles, magic mouth wash (lidocaine and maalox mixture) In addition studies show https://www.ncbi.nlm.nih.gov/pubmed/25902839 talernating ibuprofen is OK (studies done post opiod epidemic) with the Tylenol with codeine. If you want to go to straight Tylenol that is OK to dose Tylenol and then Motrin every 4 hours for pain relieve. Lots of swelling – so if no complications and pain is severe – steroids as a medrol dose pack can help. Finally, fever and bleeding require emergent calls to your doctor and possibly the hospital. Expect 8-10 days of serious discomfort. And get ready with ice packs! Drink or eat whatever tastes good – tend to be soft and lukewarm to room temperature – although I did see a HaganDas bar eaten two days ago. Discuss these items with your doctor before surgery.
Now – next episode is up for “I’ve got skin in the game” Here is the lead in: and don’t forget: Subscribe, share and rate your experience on iTunes or wherever you get your podcasts. There has been so much great feedback from the community to which these are shared – messages they needed to hear in their life or cancer journey. Thank you all for making my dream come true,
Title: Are you a CEO in your life? CEO stands for Chief Energizing Officer in so many ways. Join Denise Blaskevich, CEO of S3Agency, discuss her journey as a CEO as she provides an energizing way to keep your employees, families and coworkers engaged at the work they do. This is a great podcast for CEO’s, parents, and anyone finding themselves managing a team of people. People work for people – money is important but as we have seen in the #MeToo movement, you can make alot of money and have very negative life consequences from an unpleasant work environment,
Guest: Denise Blaskevich of the S3Agency represents some of the best know brands in the world. Find out how she chooses the team to work with her and what she does to celebrate and motivate her valued team. She also brings these lessons home.
This has been quite a week. First of all, Owen and I recorded a podcast. This reminds me of NPR’s StoryCorps – a weekly favorite of mine. The podcast is a short one that packs alot of insight and emotion. He gives his perspective of being a child whose parent is diagnosed with cancer. He went through this at age 9 and now again at age 22. He really wants his fellow children of cancer patients to know – you are going to be OK and that you will find great comfort from people caring. People will show their caring in many ways and it is ok to be vulnerable to that caring. It helps you in your journey.
And I have spent the week focusing on my energy level and continue to eat well and take walks. I have found that watering the plants can be enough to make me need a 2 hour nap. The lack of energy is so surprising to me and the need to nap such a welcome relief.
Finally, it was great to see the team at Timeless win the Red Nose contest on social media. MJ2 did a great job raising awareness and money for children’s hunger.
My next podcast will come out tomorrow. I have not had enough energy to record in the last few weeks.
Life continues – and milestones are celebrated. Owen graduated from University of Arkansas on May 11. We were together as a family – and with our extended Arkansas family that took such great care of Owen during his time in Fayetteville. It is hard to believe how quickly the time passes. Maeve finished her first year at University of Vermont. Maeve and Owen are home for the time being – both with work lined up and time available for me. With the help of a friend, as most things happen these days, Maeve was able to get her tonsils out yesterday. Since this past fall she has had almost a constant sore throat. As I am ending this second round of chemo, she and I are enjoying simultaneous recuperation.
Chemo round 2 started the Monday after we returned from Arkansas. I slept most of the time in the infusion room due to fatigue from the travel. I was grateful to be able to enjoy the graduation, a few dinners out, and morning walks to get a cup of chai in Fayettechill at Owen’s favorite hangout.
Thankfully, my memory of chemotherapy in 2005 is somewhat akin to going through childbirth. Something you remember as unpleasant – the memory of discomfort is less than the reality.. While I am still taking a platinum based chemotherapy agent due to the long nature of my time without evidence of disease, a second (different) drug has been added. I remember being fatigued in 2005 – I did not recall the unremitting nausea, lack of taste, and days long periods of not being able to do much more than walk around the house and the yard. The good news is that napping comes easy and spring is in full glory here in Ohio.
A friend came by last week and added annuals, perennials, herbs and vegetables to our gardens around the house. Each morning I wake up, I take a moment of gratitude for this special gift and something I surely could not have done for myself this year.
While Memorial Day celebrations occur this weekend, I hope to have the energy to have a few friends stop by – feel free to consider yourself invited if you are in the area. Chemo round 3 begins on Tuesday morning – and then there will be 9 rounds left.
I am grateful this morning to feel good enough to be up as the sun rises and enjoy the singing of the birds. Have a great day and enjoy the special gifts today brings.