Life in Lyme Light

Taking a break from wedding planning to announce, IT’S MAY! Time for Lyme disease awareness month, help me spread awareness with your story! Feel free to send me your May Day story post, or shoot me a few sentences about your experience with Lyme (however much you’d like to write). What has helped you on your journey? What inspires you? For the artists out there, there’s an option to create your own butterfly wings to be shared with your story! (Also accepting other health journey stories as well, because we all know… it’s never just Lyme!) 🎗

“Still gangsta”

I whisper to myself

as I lay in bed with pjs on

drinking chamomile tea

with a heating pad on

wearing mismatched socks

and a strict 9pm bedtime.

For esophageal cancer, your medical team will develop a comprehensive care plan based on the type of condition you have, your age, the presence of other illnesses and your overall health. This may involve a combination of chemotherapy, radiation therapy, immunotherapy and surgery. During your treatment, your doctor may recommend periodic PET scans to see if treatment is working, or create a new plan of action. New studies are constantly being done and evolving medicine, so keep in mind that googling cancer statistics doesn’t reflect current patients, plus everyone’s situation is different. Your team will work together to figure out what works best for you.

#notetoself Remember that taking care of yourself is productive. 🦋 Rest = time well spent.

I’m not going to lie, this shiz is tough and I’m still figuring it out. But here are some tips as a caregiver, to hopefully help others that find themselves helping out a loved one. PS - you’re doing amazing. Tips for caregivers:

* #1 - Eat and sleep whenever you can, it’s exhausting and you need your energy

* Stay organized: keep a calendar notebook for appointments, tracking daily calories, protein intake, hydration, medication schedule, weight and blood pressure

* Prepare questions prior to appointments

* Be patient and flexible: understand that the journey with cancer is unpredictable, not everyone reacts the same—treatment plans can change and that’s okay

* Establish boundaries and don’t feel guilty about setting those boundaries, your mental health matters too

* Not everyone is going to understand what you’re going through, probably no one, but having one person to talk to makes a difference (thank you to my husband for being that person for me)

* Feel all the feels, but hit the ground running because life waits for no one, breathe. Give yourself permission to go through the emotions you feel, you’re only human

Just a reminder, no one prepared you for this and you still did the best you could. I’m so proud of you. 💞 Spread awareness with butterfly shirts or share your story at: https://linktr.ee/lifeinlymelight

Hey there little fighter, things will get brighter ☀️

We’ve been through nine treatments so far, as a caregiver I wanted to compile a list of tips that could help someone else going through chemotherapy for the first time:

* Prioritize hydration, balanced nutrition, and rest, and maintain good hygiene

* Bring protein snacks, juice, crackers (or whatever bland snack you are able to swallow for nausea)

* Comfortable clothes that make your medical port and 5-FU pump accessible

* Hat and gloves help with cold sensitivity, which most people get as a result of Oxaliplatin

* Bring activity items; cards, magazines, boondoggle, books, coloring/paint by sticker, knitting and friendship bracelets

* Apply numbing cream 1 hour prior on port access

* Bring anti-nausea medications for after treatment

* Use the bathroom before getting settled, the rolling IV stand can easily be brought into the bathroom with you during treatment too

* Don’t be afraid to ask the medical team questions before, during and after

* Friends/family can join you during treatment and keep you company

* It’s okay to just relax and nap too—bring headphones, earplugs and eye mask! Chemotherapy is tiring and sometimes the overhead lights, digital screens and other patients can be overstimulating.

Another thing I want to point out is if you feel like something isn’t right—say something. Do not be afraid of being annoying, you are never a burden. This isn’t easy to go through and can impact people differently. It won’t be easy, but it will be worth it.

The stomach normally makes strong acid and enzymes to help digest food. In some people, acid can escape from the stomach up into the lower part of the esophagus. The medical term for this is gastroesophageal reflux disease (GERD), or acid reflux. This can cause heartburn or pain that seems to come from the middle of the chest. GERD sets a higher risk of esophageal cancer, specifically adenocarcinoma. As previously mentioned, leaving GERD untreated can turn into Barrett’s esophagus as well. Some people don’t experience any symptoms at all. 

As a caretaker, it was extremely tricky to figure out things someone with esophageal cancer could eat, as it causes difficulty swallowing and even the risk of choking. There are support groups online and plenty of recipes for purees, but keeping up protein and nutrients can be hard. Here’s a list of things I could think of so far that have helped us on this journey (I’m not a doctor, or dietician):

Liquid foods; soup/broth, smoothie w/o seeds, milkshakes, juice, jell-o, popsicles

Protein; eggs, cottage cheese, Greek yogurt, peanut butter, powder mixes

Nutrition shakes, many to choose from

Try crushed, or divided multivitamin

Avoid large meals, acidity, spicy hot, seeds, nuts, pasta, roughage like vegetables, fruit skin, or whole grain

Swallowing is difficult, but try hydrating and remember liquid food counts towards your daily water ounces

Other soft foods include; yogurt, pudding, cream of wheat, brothy pastina, mashed potatoes, avocado, bananas

Calories are your friend—add in olive oil, butter, cheese, unflavored protein powder

Eat what you feel comfortable with!

Stop scrolling! - Mental health check-in;

How do I feel?

What do I want?

What do I need?

What can I let go of?

What can be celebrated?

Here’s a continuation of questions to ask your medical team when starting your health journey, this set is focused on diet. Feel free to comment points you would add. The next set of tips shared after this will be about diet, based on what I’ve gathered as a caretaker for esophageal cancer.

Questions to ask your doctor/dietitian: * Should I follow a certain meal plan? * What about special vitamins, or diets that friends tell me about? How will I know if they are safe? * What should I do to prepare? * What’s the next step?