“My Best Advice as a Caregiver” by Annie Achee of the National Leiomyosarcoma Foundation

I am not the patient, but the caregiver of my husband, Dr. Mitchell (“Mitch”) D. Achee, Radiologist, and Leiomyosarcoma (LMS) survivor of 5 years.

Leiomyosarcoma (LMS) is one of 50+ subtypes of sarcoma – 13 -17% roughly of all sarcomas. Sarcoma is 1% of all cancers. LMS is a designated rare disease.

He is currently the Medical Advisory Chair for the National Leiomyosarcoma Foundation (NLMSF). He speaks to LMS patients all over the world. Throughout his career, he has exemplified noteworthy compassion and great concern for patients, continuing to this day. He has presented information about radiology studies for patient education programs to help patients and caregivers better understand diagnostic interpretation and findings and the significance of monitoring disease progression through such studies.

During Mitch’s diagnosis and treatment phase, I decided I needed to be more than just an “observer” of the processes. I needed to be involved in each phase of this cancer journey. I had to arm myself with knowledge about the disease, what treatment side effects to expect so I could be prepared to help minimize them, sidestep them if possible, and manage them in the best possible way. I read everything I could get my hands on to learn as much has I could, as fast as I could.

This all made me stronger somehow. I was so focused on doing the right things for Mitch, and trying
not to make any mistakes or miss something I could have prevented. I was empowering myself, and
I did not even think about it that way at the time. But looking back, I am glad that I approached my
caregiving role in that way.

I researched many articles in order to prepare questions for the oncologist, and sent them ahead
of our appointments – about three weeks ahead, to be respectful of her time, and allow for time
to respond.

I still to this day, continue to research, learn, and reach out for help and support. I don’t want to isolate myself, but rather grab hands and move together in the direction that will do the most good, one patient at a time. My research now applies to helping other patients.

I want to help them build their self-advocacy skills, to make a difference in their oncology appointments. They too, must educate themselves to be able to ask the right questions of their oncologist about their treatment options, what to expect during treatment, after treatment, and how to take care of themselves through nutrition, exercise, etc. to maintain quality of life and hopefully sidestep a cancer recurrence.

My advice to caregivers based on my experiences in the rare disease and rare cancer journey is this:

1. Take care of yourself. You must stay healthy so you can be well enough to care for your loved one.
2. Don’t lose your sense of humor. Watch a funny movie together – to give you both a break from stress and anxiety, even if it is for just a little while. The old adage “laughter is the best medicine” still applies!
3. Seek an oncological massage for your loved one; have one yourself – some cancer treatment hospitals offer oncology massages for stress release.
4. Stay connected with friends. They can be a source of support and strength.
5. Keep notes (a journal perhaps) of your loved one’s treatments and appointments. I kept a medical appointment notebook, with pocket tabs for CT/MRI scans /reports, blood labs, my notes; information from the oncologist, a list of questions to ask. This helped to stay organized and be able to prepare for the next appointment by having previous appointment information readily available in chronological order.
6. Finally, the National Cancer Institute has a resource information for caregivers –“Caring for the Caregivers.” Go to: http://www.cancer.gov/publicatons/patient-education/caring-for-the caregiver

It is my honor and privilege to be able to reach out and touch someone through a personal phone call, patient education programs, talking with LMS/sarcoma researchers, or work with state and federal legislators for an LMS Awareness Day– all in an effort to amplify the voice of the LMS patient community through advocacy.

Caregivers are the “first responders” to what it takes to keep “their patient” in a positive emotional and physical place to continue the treatment journey in the best possible way, for the best possible outcome. It takes courage and strength to overcome the fear of uncertainty and the unknown relative to a rare disease/rare cancer – for both patient and caregiver.

I am continuously inspired by everyone I meet in the rare disease community – from patients and caregivers, to social workers, nurses, other patient advocacy resource organizations, and the researchers on the front lines, working hard to accelerate research breakthroughs in order to advance treatment options.

I appreciate Global Genes, for the scope of their mission and focus to support the Rare Disease Community on so many levels.

Annie Achee
National Leriomyosarcoma Foundation
Caregiver for 5 years