Lessons learned #13: each person hears differently

In reference to #13 (each person hears different things), I highly recommend another set of ears for any important doctor appointment. As a patient who has had ongoing chemo for over 3+ years, I definitely hear things differently. My chemo fogged brain or living in pain causes me to definitely hear every other word. On Thursday, my doc arrived to review the lovely checklist that I created. My mom came too. As my doc reviewed the list, I heard, “blah, blah, blah” and next drug has these side effects, surgery, moving to another city for a trial…all info created a bubble of anxiety which made me feel that I was in a tunnel. Meanwhile, my mom heard that there are options and Jim heard that there are still many items outstanding which require follow up, but due to the holiday we have to wait another week. We all heard the same thing about next week. Next week will be the week to know if this drug is providing any bit of disease stabilization. If not, the next drug option would be an every single day chemo. Hmmm…I cannot think about that now. I remind myself that I must stick to the one day at a time.

Before chemo, my niece along with my sister created an amazing carnival of activities for our New Year’s Day party. It couldn’t have been better. Such special family moments of playing, “who is smarter than a 5th grader”, making a mask photo booth, writing a letter to our future 2015 self (I passed on this activity since I cannot think about tomorrow), pick a name from the basket and tell of your favorite memory of that person…and much more. All so creative and all was so meaningful. I enjoyed every minute.

After chemo, I talked to the palliative nurse who gave me some ideas on how to manage things without a ton of drugs. Mostly, she was amazed with my attitude and perseverance. She reminded me mostly of quality of life and making the most of my day, hours, and minutes. She will call me in a couple of weeks. I cannot even think about the couple of weeks. Deep breathing, looking at the wispy clouds in the sky, and seeing the palm trees in the wind, I miss my family who left yesterday. I will find my sunshine and hope you find yours. Instead of your new year’s resolution, why not find your idea of the year that represents you and stick to it. Weight and fitness seem to be so unimportant (especially for me since keeping on weight means staying alive). What about sticking to the simple important priorities like family, friends, and just plain ole’ enjoying your day? What about being kind to others (meaning everyone: on the road, off the road, in the store…)? What about NEGU as it applies to everyday living? What about not stressing about the silly things? What about living in the present? I am asking you to find the idea for 2014 and stick to it. My idea is NEGU and even more focus on enjoying the moments.  Take a look around, there is so much to enjoy. Today is now. Yesterday is gone. I find my joy in the simple things and hope you find yours.

 

Lessons Learned Living with Cancer (but can work with any chronic illness)

1. Be your own advocate BYOA

2 mistakes happen

3. Take control of your treatment TCT

4. Drug dosage based on 200lb man, you may need to adjust

5. Sometimes there are no answers

6. Living with the unknown, part of the journey, try to accept it and live in the present

7 it’s okay to visit the island of negativity, but make sure it is a short flight

8. There is always someone sicker than you, dying today, yelling for your doctor’s attention, so choose to be demanding at the right time

9. Nurses are the best source of info

10. Ask questions, don’t be afraid

11. Ask for help, to friends, neighbors, co-workers,

12 for you to succeed, you can’t do this alone, this journey requires you to get help,

13. Take notes and have someone else present, each person hears different things.

14. Eat and drink, whatever, whenever, your body needs fluids and nutrition to fight the cancer

15. Seek out 2nd, 3rd , 4th opinion, you can learn something from every doc.

16 use your time wisely and save your energy for what is important to you.

17. Think outside the box, have an oncologist who thinks the same way or find a new one.
18. Find your style, dress for a successful chemo! Mind over matter.
19. NEGU: Never Ever Give Up
20. Hope is a 4 letter word, so never lose hope

 

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