Several Resources I Counted on During Treatment for AML

When I was admitted to Moffitt Cancer Center for treatment to arrest my acute myeloid leukemia, I was walked through several hospitalization orientation steps. Thankfully, I had my brother at my side. Later I was blessed with a bevy of helpful social workers.

The process can be distressing and emotional. From the get-go, the treatment center required insurance, billing information, medical records, radiology images and pathology slides (for some patients with cancer), informed consent and a list of medications. There was training on the use of a patient portal to access records, messages, appointments, resources and more.

The touchier topics are approached. Do you want to give someone power of attorney? Do you wish to complete advance directives? Do you need to create a will? Do you need financial assistance?

When you’re in a state of bewilderment, and perhaps even physical pain, all these steps can be daunting.

Take a breath.

Caregivers and social workers are godsends. Though genuinely empathetic, social workers are less emotionally affected by your diagnosis and can therefore focus on processes. Lean on them.

My social worker helped my caregiver and me execute forms, including the power of attorney and advanced directive. She provided a list of institutions that could help financially and emotionally. She advised me to submit my social security application. Honestly, I think she did a whole lot more, but I just have a lousy memory. I do know this: She listened. A lot. (Are all social workers born with a sweet voice?)

The list of resources for financial aid was long and remarkable. I reached out to The Lymphoma & Leukemia Society with my social worker’s help and submitted a request to take advantage of their insurance co-pay program. I was bewildered and delighted that they paid a large portion of every monthly insurance premium! They are now in my will.

There were numerous other foundations that provided grants to help with the housing and transportation and other expenses for patients and caregivers. I was hospitalized during the COVID-19 pandemic and there were grants for one time relief help. Almost all my applications were approved. The list had at least 15 resources for financial aid.

Emotional help was also abundant at Moffitt Cancer Center — they had therapy dogs visit select patients. Cellists played music in common areas. Coffee and treats were shared with patients and caregivers in the surgical areas. Volunteers visited patients in infusion centers. I was in the bone marrow transplant ward and could not leave the unit, but for other patients, there was an art room with art supplies and instructors. There was a library and a chapel. There were support groups no matter where you were being treated.

My social worker introduced me to Imerman Angels. Even though I did not reach out at the time, I am now an Angel, myself. Through their unique matching process, Imerman Angels can connect you with a custom-selected Mentor Angel whose life experience and cancer story were much the same as yours. Sometimes we don’t want to share our feelings with loved ones. We may even disagree with our caregivers on a topic. Sometimes patients don’t have remaining family or someone nearby who can be by their side. I remember wanting to talk about death, but not with my family members! The mentor can be an ear for anything you wish to share.

American Cancer Society Hope Lodge communities offer a home away from home for people facing cancer and their caregivers when cancer treatment is far away. A Ronald McDonald House program can help reduce stress and financial burden for families when they must travel far from home to access medical care for their child.

I remember getting treatment. I remember the cellist. I don’t remember struggling with forms or worrying about bills! Thanks to my social workers, caregivers, charitable foundations, institution-provided education, volunteers and support groups, I was able to focus on getting better. And I did.

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