Mary Sansone is a survivor of acute myeloid leukemia. She was first diagnosed in 2016 at the age of 51, and again in 2020. She received a bone marrow transplant at Moffitt Cancer Center in Tampa in 2020 during the pandemic.

Mary also suffered from depression and alcohol addiction in her past. She has empathy and compassion for all patients and caregivers, especially those suffering with addiction issues.

Mary shares candidly about her own experiences.

Mary Sansone

As a survivor of acute myeloid leukemia, some things are no longer going to be normal, but who wants to be normal? 

4 Years After My Bone Marrow Transplant for AML 

Four years ago, I had a bone marrow transplant to combat the recurrence of acute myeloid leukemia. At every check-up since, I‘ve been told that I am doing remarkably well. I am insanely grateful for the many who spent their lives researching and innovating effective treatments. And for the doctors, nurses, facility managers, caretakers, custodians and oodles of others who helped me — directly or indirectly.

Even though I recovered from cancer, not everything is now normal. But who wants to be normal?

All the important things are normal. By that I mean, my complete blood count (CBC) tests show all indicators are “within normal range.” I do have high triglycerides and low protein, but that is a result of my lackadaisical response to nutrition and exercise challenges. (I must get off my butt and go biking, and then snack on chicken breast and broccoli.)

But CBCs and urine tests don’t rate your hair growth or your mental health.

All the chemo that I received over the years affected my bones, teeth, nails and hair. And attitude.

Four years after the transplant, I now wake up daily to see my baby orangutan hair in the mirror. Bald spots are adjacent to unruly sprouts of very fine hair. I tried shampoo with keratin for years with no change to the density or volume. I frequently trim my patches by just grabbing a chunk and scissoring. No rhyme or reason for the hacking. God invented baseball caps and wigs.

My nails are more fragile than before cancer, and sometimes the nail doesn’t fully connect to the nailbed. I am told to fully dry my hands after washing, keep my hands clean and drink milk. There are also grooves in my nails — a common occurrence after chemo.

My neck and back crack and crunch all day long. I had several bone density tests done and have been diagnosed with arthritis — certainly from aging but exacerbated by all the chemo. It’s getting worse every year. Sometimes it feels great to contort my head so that the joints pop, but I worry when I feel bone on bone. Still…

I react differently now to mosquito bites. If I get a bite on my hand, a large portion of my hand will swell up for days. I used to try to get the venom out which would result in a discoloration of my skin. Now I just apply topical cortisone and wait. Eventually, it goes away.

I don’t mind wearing a baseball cap on my errands and donning a wig during work. I don’t mind yoga to alleviate the arthritic pain. I don’t mind the cooling sensation of cortisone medicine.

I am happy. Before cancer, I went into a depression. After cancer, I decided to do something fun for work, instead of suffering through red-tape-heavy, intense, high-pressure days in the corporate world. I decided to stop the exhausting travel, 3 a.m. emails and constant peer conflict. Come see me in Tampa Nordstrom for some personal styling! For that, and for my life, I thank the chemo.

I do mind cancer. I will always stay connected with my healers and the patient and family community.

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Articles

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.

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.

Before receiving treatment for acute myeloid leukemia, I made it a point to take advantage of all the resources that were available to me. 

Several Resources I Counted on During Treatment for AML 

While spending weeks in the hospital for acute myeloid leukemia, I tried eight fun things to keep me busy. 

8 Things to Do While in the Hospital for Cancer Treatment

I had acute myeloid leukemia twice. Each time I was diagnosed, I was immediately hospitalized to begin induction — a treatment plan that consisted of receiving chemo for 24 hours over seven days. I then had to stay in the hospital until my neutrophil (white blood cell) levels came back up to normal — which for me was another three weeks. Neutrophils are an essential part of the immune system, and they were depleted by chemotherapy.

After the second diagnosis, I not only had induction but four months later, underwent a bone marrow transplant. Again, I spent weeks in the hospital.

Now, I want to preface this blog by saying that I spent most of my time in the hospital doing whatever I could to improve my physical discomfort. I spent considerable time on the toilet. I made efforts to find positions that took away the cramps and nausea. I often had a visitor from my Gemeinschaft (Fancy word for close family and social inner circle. You’ll understand later.). Doctors and nurses constantly attended to my needs. I slept a lot. I tried to eat. I cried. I mostly rested.

But when I was alone and awake, I had my thoughts. I wanted to do something that would alleviate the boredom, assuage my anxiety and lift my spirits. Surprisingly, I don’t think I turned on the TV once! That’s extra good since I am an ex-smoker. Watching TV made me crave a good cup of coffee and a cigarette. Keeping busy with my hands helped.

My matutinal (fancy word for morning ritual) would be to call for coffee and yogurt. Both tasted like metal (a chemo side effect), but “mind over matter.” I then consented to all the Aesculapian directives (relating to medicine and physicians), proffered by my physicians and let the nurses and doctors do their thing.

Next, do something to make the day not so miserable. As a matter of fact, make it as enjoyable as possible.

It started with water coloring. But I ended up with omnifarious (fancy word for all sorts of varieties) creative outlets that took my mind off cancer. I thought I would share some with you.

Painting: I went crazy with watercolors. I never painted in my adult life. I was gifted an armamentarium (fancy word again) of watercolor sets and brushes. I wasn’t very good, but I became obsessed.I have two brothers and two sisters, but I focused on the girls. I started “The Sister Series — The Early Years.” Now my siblings all have a piece of art framed in their home!

Write: but don’t just do gratitude lists and journaling, although that is important and helpful. I subscribed to Word of the Day. One great way to actually reify (make something more concrete or real) your new vocabulary words is to try and write a fictional short story. Mine was hilarious. I subscribed to a pleonasm style (using too many words to describe things.)

Self-interview: it was a fun exercise that reminded me that I was more than a patient with cancer. It also afforded me to do some self-exploration. I made up some questions. See examples at the end.

Play with your maquillage (fancy Word of the Day for makeup.) I always did the same makeup application. I thought, what a better time to see if I should mix it up? I found out that “cat eyes” are not a good look on me. I got a little blush-heavy and sometimes ended up looking more like a cartoon character. Nurses were very amused when they came into my room. But I will tell you, putting makeup on when I was sick and bald helped my spirits.

Knit: I didn’t do this but it could be fun!

Macrame: I didn’t do this but it could be fun too.

When I was out of the hospital recovering, I was a little sharper and had a bit more energy, so I took an online Zoology class. I love animals.

Learn how to Vlog. I’m not a good editor, though.

Here’s an example of my self-interview.

What would you do if you won $10 million?"

Put $5 million aside for taxes and enjoy the surplus — if any — later. I would give a specific amount here, but at least $2 million divvied up between family, David Sheldrick Wildlife Trust, NDMP (bone marrow matching), Moffitt Cancer Center, The Leukemia & Lymphoma Society, Borneo’s Orangutan Foundation International and the best institution to support whales. For fun, one mega vacation and a great wardrobe. Bank the rest to decide later.

If you could communicate with a wild animal, which animal would you choose?

Elephant. Gorilla and Orca are right there too. I’m fascinated.

If you could pick an album that you wish you could hear for the first time – what would it be?

U2’s Joshua Tree. I was never so moved by music in my life until I first heard the album. (Do they still call it an album?)

A song/music video or movie that makes you cry?

Michael Jackson’s “Earth Song” or Prince’s “Purple Rain.”

If you were given the option to travel to one destination, first class, with all expenses paid, without losing your job, where would you go?

To see Orcas in the wild. Ideally, I would travel the world with a National Geographic whale scientist to see all the types of whales on comfortable safe yachts and in calm seas.

What’s the weirdest dream (sleeping dream) that you can remember?

Elephants in the middle of the ocean flinging me with their trunks into outer space where I had to save my cousins. If I flew past them, I couldn’t save them. I had to stay beneath them.

My dad’s scrambled eggs — he adds a little cottage cheese, chives and bacon bits and doesn’t overcook them. 

You would think it would have something to do with animals, but I would love to be a choreographer or fashion designer. I’d get involved with wildlife sanctuaries.

If you could take one thing to a deserted island where you would have to live alone for a year, what would it be?

Everything I needed to survive happily and comfortably. One could argue that this is “one thing.”

I’m taking “pen to paper” to journal about something I am currently experiencing.

This is slightly embarrassing to share, but I believe that some patients in this community may relate.

I had just gotten out of rehab after relapsing on alcohol following 25 years of sobriety due to depression. While in treatment, I was among at least 30 to 40 other patients all day, every day for months. The recovery journey was intensely social. I then went into a sober living home with other recovering addicts. The house was disgusting but I had the support.

I was beginning my job search while living in this dingy halfway house. Before I began my new life, I visited Moffitt Cancer Center for a routine checkup. I was in remission from acute myeloid leukemia (AML) that was diagnosed and treated in 2016. Dr. Sallman, my oncologist, gently informed me that my leukemia came back.

I called my older brother while I was in the room with my doctor to share the news that my AML returned. When he realized we were on speaker — before the diagnosis was even shared — he knew what he was going to hear. He was by my side from the “Hi Chris, I’m here with Dr. Sallman.”

Chris had the task of telling my three other siblings and parents about the news and my bone marrow transplant treatment plan. I was pained when I heard that they “They didn’t take the news well,” but it also warmed my heart. I didn’t feel alone.

Doctors, nurses, chaplains, social workers, brothers, sisters, parents and friends all attended to my physical and emotional well-being. Even my ex-husband flew from Chicago to Florida to visit me. My brother was helping me with my will and became a Power of Attorney to deal with my financial obligations during treatment. Social workers were connecting me to amazing Not-For-Profits that helped with my insurance co-pays. Physical therapists, hair groomers (shavers), massage therapists and volunteers popped in to guide me on the journey.

I was blessed with generous gifts of precious time taken from peoples’ busy schedules. They comforted me and provided coveted distractions from nausea and fear. Pajamas, beanies, watercolor sets and stuffed animals were presented during visits. Phone calls made the time go by.

In the meantime, nurses and medical team members were checking in on me. At Moffitt, they want to check on 

 of you, and not just the physical discomforts. Sometimes doctors stayed with me for up to an hour explaining procedures and side effects — drawing on all the whiteboards in the room. Their delivery was never condescending or patronizing. Male doctors never “mansplained”; they talked to me like a smart and worthy partner in the journey.

I was so grateful when I was finally sent home after a bone marrow transplant. I stayed with my brother and his wife in their lovely home for a year recuperating. My younger brother was living there as well. At follow-up appointments, I was told that I was “the poster child for bone marrow transplants!” 

Eventually, I moved out and got a job. Ahhhh. Alone at last!!

I loved being able to jump into the world again and steer my own ship. I enjoyed watching whatever I wanted to watch on the TV. I liked sleeping in when I could. I enjoyed the quiet of the night.

I had a bad day at work. I am a commissioned-based jewelry sales associate and personal stylist. Yesterday I received staggering returns from customers — one big return after another. It was almost laughable. This would drastically affect my paycheck. Was I being punished? As I struggled with this thought, I admonished myself for having a flimsy spirituality. “I’m so shallow!” I was upset with myself for feeding the pain with anger and frustration. I was supposed to be an Ace at Acceptance given my attendance at all those AA meetings.

I came home from work to my apartment. I sat by myself. Why am I focusing on the frustration rather than seeking peace? I have money in the bank after all.

It kinda clicked in. I realized that I was experiencing some loneliness.

I sent a quick text to my sister Amy. Immediately she shared positive reinforcement. We joked, “Are you reciting the framed motivational posters in your bedroom?”

On a bigger and broader level, loneliness after treatment is a part of many patients’ stories. While sick and in the hospital, many of us experienced a plethora of unpetitioned compassion and attention. We didn’t need to “hope” that a doctor would check in on us, or “hope” that someone was thinking about us.

Many patients with cancer who leave the hospital after being treated for cancer have a sense that their safety net has been pulled away. The calls and visits dwindle. Loneliness may set in. This may be subliminal yet powerful.

Some former caretakers or family members may think that once treatment is over, we will return to living our lives exactly like before, even though this may not be true. There may be some shifts in how we approach life’s challenges. And some new peek-a-boo scary moments of uncertainty.

I volunteer and I’m among many people at work. I go to dinner with my friends. I talk to my family.

Loneliness can still strike, albeit not too often.

I appreciate Marianne Moore’s prose: “The cure for loneliness is solitude.”When I feel at home in the here and now, I feel more at home in the world at large. Solitude gives me space to just exist without the expectations from work, family, and friends.

1.)Shift my self-perception from loneliness to sweet solitude.

2.) When I am vulnerable, I ASK for help. When I don’t reach out, I dip into pity-party territory.

3.) Do not beat myself up when I go through the process of dealing with disappointment or sorrow. I would be intolerable if I was a walking talking “Gratitude Gumby!” I am human.

After receiving cancer treatment and leaving the hospital, sometimes it feels like a safety net has been pulled away and loneliness sets in. 

Mary Sansone

4 Years After My Bone Marrow Transplant for AML

Several Resources I Counted on During Treatment for AML

8 Things to Do While in the Hospital for Cancer Treatment

Experiencing Loneliness as a Cancer Survivor

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