COVID has created a sense of low-level brewing anxiety in me that I have never experienced before.  Current events add to this with inflation, ongoing war in Ukraine, and supply chain issues all contribute to feeling overwhelmed with many unknowns. The unknown often creates fear.

Living with acute myeloid leukemia (AML) is one of the greatest unknowns. You don’t know exactly how you’ll respond to treatment, what side effects you may have or how long the treatment will be effective  You don’t know if your insurance coverage will change and impact the cost of your treatment, or if the financial assistance program will have funds when it is time for you to re-apply.

AML causes deeper and even more personal unknowns - will you be around when your child graduates from high school, gets married or to see grandchildren? Will you be able to enjoy retirement with your loved ones?

When my husband was diagnosed with blood cancer seven years ago at the age of 39, a colleague connected us to her friend who also had blood cancer. He spoke at length with my husband and gave him a piece of advice that has guided us through the unknowns the past seven years.

He told him there was a choice that he must make on a daily basis.  My husband would have to decide which one of these thoughts would be allowed to occupy his mind for the day.  

1. Fear and doubt OR

      2. Faith and hope

Each one of these types of thoughts would come with profound consequences.  

Anyone with AML (and their family) knows there is plenty of fear and doubt to go around. We found when we focused on those things, we sunk deeper in despair with compounding fear and even more doubt.

However, when we worked to focus on even an ounce of faith, it generated more hope.  We started small. We did our research, found a qualified specialist and had faith that the recommended treatment would work. As we moved along, we continued to research, discuss options with the care team and had faith that the treatment my husband was choosing was right for him and that it would be effective. As family and friends saw our faith, they contributed their collective faith and our hope grew.

This is not to say there were not (and continue to be) hard days. There have been days filled with discouragement, despair, sadness and definitely fear. It is a continuous effort to focus our thoughts, perspective and energy on having faith and not letting our fear take over.

My husband shares that for him the mental challenge of living with cancer is harder than the physical. The impact of AML on mental and emotional health is real. Maintaining health in these areas contributes to physical health. It is important to give as much attention and focus to our mental health as we do our physical health.

Many have never struggled with their mental health until a diagnosis of AML. It can be hard to acknowledge the challenge and recognize the need for help. Following these three steps can help:

RECOGNIZE YOUR CHALLENGE

• The first step is to recognize and acknowledge you are struggling emotionally or mentally
• Identify the circumstances that are the most difficult 
  • Different time periods in the cycle of your treatment may be harder than others and side effects could impact your emotions and mental clarity
  • Are you having difficulty telling family and friends about your diagnosis, treatment or difficulties?
  • Are you feeling lonely or do you hate going to treatment alone? 

IDENTIFY AVAILABLE RESOURCES

There are many organizations available to offer support including:

• Your Healthcare team- they are available to help you with all aspects of AML and can refer to other professionals
• HealthTree Community for AML- join either the Adult AML or AML Caregiver Chapter. Attend monthly Zoom meetings on isses that are of interest to you. Surrounding yourself by a community offers strength, support and shared perspective.
• Contact the Social worker at your treatment facility as they can provide tools and resources to achieve emotional health
• Seek out Psychology or Psychiatric services at your treatment center because these professionals may also be able to help with common AML side effects like brain fog, fatigue and depression
• Cancer Care: 800-813-4673 or www.cancercare.org offers free, professional support services to individuals, families, caregivers and the bereaved to help them cope with and manage the emotional and practical challenges of cancer
• NAMI Helpline: National Alliance on Mental Illness offers free, nationwide peer support service. 800-50-6264 or info@nami.org
• National Suicide Prevention Lifeline:  1-800-273-8255 (1-800-273-TALK) Anyone thinking about suicide or worried about someone in distress
• Crisis Text line: Text HOME to 741741 - this is for anyone in crisis in the U.S. Free 24/7 support and information via text by trained crisis counselors volunteer to support people in crisis

TAKE ACTION

• Don't be afraid to talk about it
• The resources and tools available must be used in order for them to be effective and even a small step can help bring relief
• Making the effort to take action will bring benefits

May is national mental health awareness month which started over 50 years ago to bring awareness to the mental and emotional challenges experienced by so many. These challenges are REAL and need to be recognized and treated. They are not a sign of weakness. They can often be difficult to understand and accept, especially if you had previously been healthy (both physically and mentally)  and not had to deal with these challenges before AML. Let’s work to break the stigma of mental and emotional health! Take action to provide yourself with the support, care and treatment needed to achieve health.