Patient Power: How to Maintain Emotional Equilibrium When You Have Myeloma

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How do you and your family find an emotional equilibrium, so you can live positively with cancer? Cancer treatment can come with a heavy emotional load. Andrew Schorr speaks with cancer patients and care partners Danny Parker (myeloma patient), Lori Puente (husband was diagnosed) and Robin P. Katz (social worker) who share their perspective on how to live positively while you or your loved ones undergo cancer treatment.

How to Maintain Emotional Equilibrium When You Have Myeloma from Patient Power on Vimeo.

THE PATIENT, CARETAKER, AND HEALTH PROFESSIONAL

Danny Parker – Diagnosed with multiple myeloma in 2010, father and husband. Focuses on living a life with equilibrium with a healthy balance of nutrition and diet.

Danny practices something called “Zen living.” This practice helps him live a reflective life, as he consistently does a self-check on how he is coping. It also helps him develop the muscles and abilities to weather difficulties, take in the situation, and realize how he is going to move forward in a way that will not have others worrying about him.

“I’m living with myeloma, but I’m not living for myeloma.” – Danny

Lori Puente –  Husband Dave has myeloma and has been through double transplant. She is a full-time caretaker.

Being a caretaker is no easy task. Lori mentions that sometimes she feels very alone, because while she loves her husband and knows what he is going through is hard, she is unable to express her complete thoughts. Lori emphasizes on the importance of taking those moments “to quiet your mind.”

Positivity has become everything to Lori. She said,

“You know what? I am a survivor… I am going to do everything I can to keep him alive, and make sure that we have a good quality of life. And whatever happens, I need to positive and remember that I am a survivor, and I am going to be okay.”  – Lori

Robin Katz – HealthCare Professional and Oncology Social Worker at the Robert H Leery Comprehensive Cancer Center at NorthWestern. Counsels families and patients about cancer everyday.

Robin counsels patients and families about cancer everyday. She emphasizes on the importance of trying to stay in the moment. Although that can be really hard, and at the beginning it may be overwhelming, it is important to do so at the beginning of diagnosis. Medication will change, a patient may change treatment, but Robin said “staying the moment, and don’t look too far ahead.”

QUESTIONS

How can patients and caretakers deal with stress/communicate?

HealthCare Professional Robin Katz recommends three ideas to deal with stress:

  1. Have open, healthy communication with those around you
  2. Journaling – Document your experience (the good and the bad). Patients can either save their journal, or throw it out.
  3. Take time for yourself
  4. Take it one day at a time.

She also recommends spending 20 minutes a day not thinking about your cancer, and thinking about something the will positively benefit them.

Myeloma patient, Danny Parker, has a day-to-day strategy that helps him face the storms attached to cancer. Although it can be difficult, he knows that everyday is important in the life of the patient and caretaker. He said:

We can make our best effort in the moment, because we don’t know what the future will be like. Make a ‘no regrets’ policy and mentality. We don’t know exactly what is going to be happening in the next 6 months. We do know what is going on right now though, so we can make our best effort right now.” – Danny

Patient Power Founder and cancer patient, Andrew Schorr, found that he enjoy visiting those places that give him comfort – whether it’s a walk, playing with a pet, speaking with a friend or family member. “Find that source that can help you.”

Caretaker Lori explained her method of coping by explaining about her “Basket of Worries.”

“Basket of Worries”

Concept: The objective is to take worries and turn them into wishes. Lori explains that with every negative thought, there is a positive through/wish associated with it.

Example:

Worry: A friend is going through something difficult with a child

Wish: Little Jonny is going to come to his senses and everything is going to be fine.

“Say you have myeloma. When you worry about it, think about the positive thing that can come from myeloma or about what you can control. Next time you worry about that, you pull out that wish and remember, everything is going to be okay.”

Lori, how do your kids cope with cancer?

Caretaker Lori said the biggest challenge “was keeping them focused on school.” Mainly because she had to tell them to handle most of their problems as best they could, so she could be focused on taking care of their Dad. They missed all of four years of their daughter’s Diving at Maryland (they never missed a meet before then). She said “you just have to take those moments as best you can. Cancer can be a big interruption in your life, and you just have to make new plans.”

Cancer and the stress it has on marriage?

Lori had a friend who would tell her “Lori, you can not talk to Dave about anything anymore, whether it’s taking out the trash, etc. And don’t worry, when he’s all better, we can strangle him (she said this jokingly).”

“The cancer changed the marriage for the better. You feel like you both have this secret to life, because all of that stuff that used to bug you is not important. They’ve gotten to a really good place. But not all marriages are like that, it can be hard. You really have to work at it. Overall, take care of you, take care of your family, and know how to ask for help.” – Lori

The Power of Yes

HealthCare Professional Robin Katz said the following:

“It is very stressful to worry, and it takes a lot of energy away from the family. Saying YES to activities is such a great and powerful thing for the patient and family. It forces you to do things, even if you don’t feel good and don’t want to. This will give the patient more uplifting feelings, and help the patient be “a participant in life, instead of a professional patient.”

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MyelomaCrowd Editorial Contributor. Studying Nursing. Daughter to a parent with cancer.

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