On my last post, dated 5-20-24, I wrote some questions to God just before my most recent MRI:
Malabsorption – “I do believe my body is experiencing Malabsorption:
- extreme, painful bloating in the entire abdominal cavity
- difficulty digesting and eliminating unused portions of food
- sagging, thin skin on arms, abdomen and upper thighs
- loss of weight and muscle mass
- inability to gain weight and robustness of tissue under the skin
I guess the reason doesn’t really matter. I must focus on: what to do about it?
1. Do I continue to try to fix it myself? I spend a lot of time making purées, soups, quinoa, proteins. Are they even being turned into nutrients that can be absorbed, that will help me regain the weight and skin robustness that I had? How can my body fight cancer cells and inflammation if it doesn’t have proper nutrition?
2. Or, do I start taking the pancreatic replacement enzymes (PRT) ordered by my Oncologist, at my request?
3. Questions about the Pancreatic Enzyme Replacement medication: CREON:
Can I take it short-term?
What is the lowest possible dose?
Do I have to have on-going blood work to monitor?
What are the possible side effects?
4. Did my Oncologist make a referral to see UCLA Pancreatic Cancer Nutritionist?”
How Did I Get The Answers To My Questions?
1. I paid attention to the symptoms my body was having: I have an exquisite relationship with my body and KNOW when something is not right.
2. I was assertive with my whole team of doctors (surgeon, Interventional Radiologist, Oncologist and his Nurse Practitioner. “I want to find out what is happening and find the right treatment.”
3. I pray and journal daily, asking God to lead and assist me with taking the best possible care of my body.
4. I don’t give up until I find the answer.
5. Finally, it was my surgeon who suggested, “Maybe you need Pancreatic digestive enzymes.”
6. I flew with his suggestion and told my Oncologist I wanted “Pancreatic digestive enzymes and a referral to be evaluated by the Pancreatic cancer Dietician.”
7. I asked my Oncologist’s Nurse Practitioner to discuss possible side effects of the medication and when she said, “I have never seen a Pancreatic cancer patient have any side effects,” I started with one pill/meals and snack (rather than the 2 pills/meal that was prescribed. I lowered the dose because my body is extremely sensitive to medication)
The effects over a 10-day use have been remarkable:
1. Easier digestion and elimination
2. Lack of bloating
3. Increase in appetite
4. Increase in robustness of tissue underneath the skin
5. Ability to return to eating my normal diet
6. Return of this Foodie’s Joy of Eating and Living
Yesterday I had my consult with the Dietitian who specializes in Pancreatic cancer. She told me: “Every Pancreatic cancer patient eventually develops Pancreatic Enzyme Insufficiency (those who had a Whipple surgery, Distal Pancreatectomy, Removal of the entire Pancreas, and those with an intact entire Pancreas. It’s only a matter of time. I am ordering blood work that will examine for 10 different vitamins in your body. Based on the results, you may also have to take vitamin supplements. These results will also tell us how long you have been suffering from Pancreatic Enzyme Insufficiency.”
To say that I am relieved and ecstatic is an understatement:
I thank God for His Goodness and safe keeping.
I thank the entire UCLA system for supporting my Pancreatic journey and treatment.
I thank Medicare for covering most of the cost of this very expensive drug.
I thank my husband, Hopie, Brutie and entire family for supporting me during the trying time
I dedicate my life and journey to serving God and sharing what I learn with cancer patients and their families around the world.
Blessings to all people who suffer with digestive problems. Don’t lose Hope. Solutions can be found. WE ARE STRONGER TOGETHER!
Please visit my website for empowering cancer patients around the world: