My mother was diagnosed with Acute Myeloid Leukemia (AML) at age 66, just a month after retiring. At first she just thought it was a bad cold, then a week later became short of breath, to the point where she couldn’t walk up the stairs. She went to her doctor, who realized something was wrong and sent her straight to the emergency room. A pathologist I worked with was able to diagnose her condition right away. For the next six months my mom would endure a harsh treatment regimen of intense chemotherapy, blood transfusions, whole body radiation, immune suppression and bone marrow transplantation.
According to the Leukemia Research Reports Journal, AML is a relatively rare, but aggressive form of blood cancer. Less than 5% of older adults diagnosed with AML will be alive after 5 years.
This is partially due to the treatment regimen, which is difficult to endure and puts patients at risk of contracting fatal infections.
If you or someone you know has been diagnosed with this deadly form of cancer, it’s important to realize there are things that can be done to improve the odds. As a medical professional, I knew the stakes were high when my mom got sick and did everything I could to help her recover. The following seven things helped her leave the hospital an entire month sooner than doctors expected. Although some of these are specific to leukemia patients, others can be applied to all forms of illness requiring an extended hospital stay.
1. Support
Leukemia is an illness that demands a great deal of support from friends and family. Patients will often be too weak to cook for themselves, care for their home, or drive to appointments for many months after bone marrow transplantation or chemotherapy. If at all possible, get multiple people involved in helping, as this can be stressful for one person to manage everything.
2. Socialization
While someone is hospitalized for a lengthy period of time, it’s important to talk to about what’s going on in the outside world when visiting. Being confined to a hospital floor can sometimes give patients a sense of being trapped. Talking about things other than their illness can help them feel like a person again. My mom likes to talk to people, so we set up a candy dish in her room to encourage hospital staff members to stay a bit and chat. The candy dish was also a good way to thank the staff for their care and build rapport. Mom is still friends with people at the hospital and takes them plates full of baked goods whenever she has appointments.
3. Sanitation
It’s extremely important for leukemia patients to be strict about hygiene because of their increased susceptibility to infection. Doctors told my mother that most older bone marrow
transplant patients usually contract some form of infectious disease during the course of their hospital stay. Here’s how she made it out of the hospital without getting any bugs.
We frequently cleaned her cell phone, phone case, and charger cord. I would often wipe them down with the little alcohol wipe packets the hospital had everywhere. The amount of dirt that gets on these devices was unreal!
We insisted on frequent linen changes. In a normal situation, constantly changing bed linens and wearing new hospital gowns isn’t needed, but in the leukemia unit, it’s a necessity. Sometimes my mom’s bed sheets weren’t changed as often as they should have been. On those days, I sought out the unit’s linen department representative and gently requested he change them. We had become friends with him over the course of my mom’s stay, so he was happy to oblige.
Shower and change clothing as much as possible. There will be many days that patients don’t feel like bathing or even changing underwear or clothing. If at all possible, try to make this a priority. Underwear should be at the top of the list to avoid bladder infections.
Caregivers need to be clean too. Before entering a patient’s hospital room, hands must be washed. Disposable hospital booties should also be worn over shoes to avoid tracking outside dirt into the room. People who are sick should not visit. Occasionally visitors may be required to wear a gown or mask while in a patient’s room. Follow hospital instructions at all times.
Keep catheters clean. Intravenous catheters are the most common site of infection in leukemia patients. Caregivers can directly help decrease the chances of an infection happening by properly tending to catheters. Most leukemia patients will have a catheter due to the need for frequent medications, transfusions, and blood tests. The catheter should be flushed, or cleaned, with saline once a day as long as it is in the patient. Hospitals will provide training in catheter cleaning for patients and caregivers.
Patients should wear an N95 mask in public for at least one year after bone marrow transplantation. Bone marrow transplant patients are required to wear a particular kind of face mask called an N95 when out in public. Blood counts take about a year to return to normal following transplant, making patients particularly susceptible to catching respiratory illnesses from other people while their counts are recovering. N95 masks are are the only type of mask that will prevent viruses like the flu. Unfortunately the masks are thick and uncomfortable to wear. It may be tempting to go for a lighter mask, but that won’t do. Lightweight masks prevent the wearer from viral illnesses, but they can still contract them.
Be crazy with the hand-sani usage and handwashing. For once, it’s ok to be that person.* Carry alcohol based hand sanitizer when out and about and frequently wash hands. This practice is important for both caregivers and patients.
*2021 edit: This was written before COVID was a thing. If you're reading this now, basically continue to do what you've been doing since March, 2020.
4. Prayer
Our family is small and scattered around the country so we didn’t have much physical support during my mom’s illness, but we did have spiritual support. My mother-in-law had her entire church pray for my mother every day. As a person of faith, I believe this is why she is still here. Even if you don’t believe in God, ask others who do to pray for you or your loved one. It can be comforting to know people are thinking of you.
5. Advocate
After working in hospitals for 13 years, I’ve learned that it’s important to advocate for yourself or have a healthcare practitioner who can advocate for you when hospitalized. Hospital staff may not always provide patients with detailed information about their care, but are likely to talk with other medical professionals accompanying the patient.
As a patient, try your best to be involved with your care and learn as much as you can about your condition. If something doesn’t sound right to you, speak up! Be respectful, but ask questions. Remember that doctors, nurses and technicians are human. They are experts, but can still make mistakes, just like everyone else.
6. Exercise
Although leukemia treatment leaves patients feeling weak, it’s important to get up and move. This will aid in a faster recovery and prevent bedsores, which can lead to painful, hard-to-treat bone infections. My mom would try to walk around the unit first thing in the morning on days when she felt well enough to get out of bed. At first she needed a nurse to hold onto, until she felt steady enough to walk on her own. She would also often wake up in the middle of the night and take a few laps around the unit when she couldn’t get back to sleep. After her bone marrow transplant, she would use the exercise bike on the unit while watching “Keeping up with the Kardashians.” I’m not an advocate of this particular program, but would recommend doing whatever it takes to get moving.
7. Attitude
Attitude is everything when it comes to healing from a major illness, but it can be difficult to stay positive. If a patient has something to look forward to when they are released from the hospital, it gives them a goal to work towards. Mom and I talked about how nice it would be to see her grandchildren again, and made plans to move closer to them. This gave her hope and made a big difference in her outlook. She would make it through the tough times for her grandkids. Three years later, my mom is still in remission and able to make regular trips to Texas to see her two grandchildren, who bring her great joy.
Leukemia is an incredibly difficult illness to face, but with the right support and proper care, you or your loved one can get through it. Mom and I are cheering for you.