Carolyn’s Story

Site created on September 16, 2020

Let's support our beautiful, inspirational, bad ass friend and get her through and to the other side of this cancer thing. Please check the 'Planner' tab and sign up to bring a meal to her and Miles during this time. Click on the date that works for you and then the 'accept' button so she knows that you will be dropping off a meal.  Their food requests are listed below. We will update the calendar with how to help throughout her treatment, so please check back in over the next few months.  

Carolyn had been feeling tired for many, many months, but chalked it up  to the pandemic, having to balance working from home while Miles remote learned next to her.  Then suddenly, her fatigue became profound.  She had to nap after getting her work day in. Nausea suddenly set in, her appetite disappeared and jaundice set in, making her very weak.  She was on top of it with her doctors, getting blood work, which led to an MRI, then an emergency endoscopy.  On September 9th, Carolyn learned she has stage 1 pancreatic cancer.  The good news is the cancer is at the head of her pancreas only, NOT having migrated to the lymph nodes nor her blood vessels. 

The healing journey this year will be long and tough.  She is slated to have 4 month of chemo, a week of twice daily radiation, whipple surgery and then a few more months of chemo. 

Her son, Miles, is lovingly sweet and gentle with her.  Carolyn's great hope is that he revels in his 5th grade year at Cedar Creek and his days are filled with laughter and joy from his wonderful friends and the CCE community.  Her mom flew in to be with her for a month as her dad cheerleads from Tennessee.  Her Aunt Pal and Uncle Perry will come stay another few weeks to help during treatment.

She is absolutely blown over by the love and support you all have shown her.  Tears came into her eyes when she saw how many people wanted to help.  She has been in pain and still weak so though she may not be able to visit with you or tell you directly how much you mean to her right at the moment, she is profoundly grateful to each and every one of you who is helping and holding her in your prayers and metta. 


Should you have any questions about what Carolyn needs, please feel free to reach out to me - Helen - helenluann@gmail.com / 512.917.8793


Food requests:
*  Carolyn has received so much incredible soup, so much that it is overflowing in her freezer.  If you can please hold off until mid-November on making more soup.  Chicken, turkey or fish dishes are preferred right now for some diversity. 
Carolyn has been told she can eat any protein except for beef (she is not a huge pork eater). Turkey, chicken, salmon, halibut, black cod and tilapia are all on the recommended list. 
*  Her belly will be sensitive so not too creamy, spicy or cheesy. 
*  She likes veggies like broccoli, cauliflower (she loves cauliflower Mac n Cheese, Appamada friends) and beans such as white and lentil beans. 
*  She can eat brown rice, quinoa, and pasta. 
* She loves pineapple, mandarins, peaches, grapes, melon, watermelon, berries, and pears. 
* She cannot have any sugar, sugar substitutes, red meat, caffeine or wine (sigh...). 
* Miles enjoys chicken dishes, Tacodeli mashed black beans and flour tortillas (no cheese), Pterry's plain burger and french fries, chicken, salmon and he loves broccoli, sugar snap peas and green beans.

Newest Update

Journal entry by Carolyn Miles

Dear Family and Friends,

I hope you all had a wonderful Thanksgiving holiday. Miles, his dad and I had a whirlwind trip to NYC (see some of our photos below). I was so grateful to see him experience NY for the first time!

I wanted to provide a health update. I received the challenging news a few weeks ago that my cancer has returned and metastasized to my lungs. We always knew how tough pancreatic cancer was to beat, even with the whipple surgery and 8 months of chemo. This news has been a big blow as I realized, when having to face another fight, how exhausted I still am from my first battle. It took me weeks to radically accept that I am living with a non-curable cancer and some treatment will be part of the rest of my life.  Which doesn't mean I am believing the statistics my oncologist has given me. I have always felt like I am an outlier and I believe deeply I can prolong my life for many, many more years. 

When one has a huge purpose for living, that purpose takes over. Supporting Miles until he graduates from high school, which is SIX years, is my goal.  He has changed so much since my first cancer diagnosis and being his mom is both the greatest gift of my life and richest experience in being able to support his emotional and physical growth. My ex-husband, Adam, and I are embracing his teen years, with his desire to spend lots of time with friends and of course, electronics! Secondarily, my career switch to becoming a psychotherapist has also given my life such rich purpose and depth. For as long as I am able, I will continue to practice as a therapist in private practice. I joined a psychotherapy practice, Louis Laves-Webb & Associates, in August after graduating with my master's in social work and truly feel I am contributing exactly how I should be with my unique set of skills. 

As a first line treatment, I started chemo again two weeks ago and will go every two weeks, until chemo doesn't work. We know the chemos developed for pancreatic cancer do not cure my cancer, but they can shrink or maintain the tumors. Right now, my tumors are micro size on my right and left lungs, which means I actually feel no symptoms.  So until the cumulative effect of months of chemo takes hold, I feel great. Once chemo stops working, we go to clinical trials. And what two years since my diagnosis has meant is that there are so many more promising treatments that target my unique KRAS and TP3 biomarkers. So the longer I can stay alive, the more hope we have to get me into trials move from Stage 1 (which is in mouse models) to Stage 2 trials. 

As with the first battle, I once again am focusing on what I CAN CONTROL. This is where all the contributions to my Go Fund me page, which I saved knowing this recurrence news was likely, for just this moment.  I gave up sugar 1.5 years ago, but now will switch to a full keto diet, which is tricky as I cannot afford to lose any more weight. I will continue working with oncologic naturopath in Austin and will now expand to the 2.0 version with Dr. William LaValley. I continue to exercise 6 times/week.  My aunt found incredibly promising research on high dose Vitamin C infusion so I will start this weekly to support me through chemo. To all of you who were able to contribute to my Go Fund Me, thank you SO MUCH. Your support is life altering in enabling me to use these complementary treatments, which I know will extend my life. 

And every moment and hour, I have a choice. While I fully allow myself to be angry, because I am seething in rage at this reality I am facing, and grief, as there is so very much I am sad to lose and know I will lose that it makes my knees buckle, I have to shift into mental states that help me feel good, stay focused and positive. Because I feel so good right now, I am in some level of denial that cancer is in my body.  I choose how I exert my energy and focusing on negative things does not feel good. I am focusing on living every moment to the best I can, fully experiencing LIFE and making so many more memories. That is why we jumped on the trip to NYC for Thanksgiving as I want as many memories as possible with Miles. 

MY REQUEST FOR YOU ALL:

  • Most important! Please do not only see and treat me like Carolyn who has cancer. Yes, I want to talk about my cancer and the emotions and feelings that arise. But I aso want to feel as normal as possible. Which means wanting to hear about your lives, celebrate and cry with you as you go through your own events and challenges.  Deep connection is such a priority so please, please keep allowing this between us. I am adamant that I do not want cancer to take over my life. Which means celebrating being alive and embracing all the precious moments I get with you all.
  • I am back on an every other week chemo schedule so will need transportation to and from chemo. I usually get there between 8-9 and leave between 12-1. So if you are free during these windows, this would be extremely helpful as I am too zapped after chemo to drive. My next chemo is Nov 30, then 14 and 28th. 
  • Eventually I will ask for support with meals (keto diet). I know it sounds crazy, but I especially would appreciate any people who enjoy baking to make me keto desserts, keto bombs and breads as these are the most challenging time and energy-wise baking tasks right now.  It is amazing we live in a time of stevia and monk fruit products!
  • Prayers, prayers and more prayers. I truly believe the collective prayers from all of you last time made such a significant difference. If you can pray for my cancer to shrink or by miracle, to disappear again. And please pray for Miles, his dad, my family and dear friends who I know will be so profoundly impacted by my cancer as it runs its course. 

I so appreciate all of your support, positive thoughts, and love. I am so grateful for the richness of connection I feel with my family and friends. I will continue to provide periodic updates and in the meantime, leave you with this. Hug your loved ones, bask in their presence, call that family or friend you've been meaning to connect with and live as if you may get news that will change your life as mine has. For we all forget with the business of normal life what a privilege it is to be alive!

With love and gratitude,

Carolyn

Patients and caregivers love hearing from you; add a comment to show your support.
Help Carolyn Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Carolyn's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top