Getting back on her feet — and deeply humbled during recovery

Author Jackie Warren-Moore shares her story of recovery. Below: her dog, Sasha. (photos by Robert Mescavage)

Author Jackie Warren-Moore shares her story of recovery. Below: her dog, Sasha. (photos by Robert Mescavage)

BY JACKIE WARREN-MOORE

It was surreal. I remember the dark, almost slow-motion fall. The scream, mine. Then the confusion, pain, red lights, movement and assurances that I would “be fine.”

I was in Upstate University Hospital downtown. I had tripped over my 100-pound German shepherd and fractured the femur in my left leg. Things were not looking “fine.”

After the emergency surgery, the surgeon smilingly informed me that he had to “be very creative” to put my leg back together, but after rehab, I’d be “fine.” There was that word again. And I knew I’d have to do my own assessment of “fine.”

‘”I was told I could not put any weight on that leg. My one attempt to put weight on it assured me they were right. They also assured me the place for me was at the Physical Medicine and Rehabilitation Program at Upstate’s Community campus.

Sasha, Jackie Warren-Moore's dogI’d previously witnessed scenes on television of people in physical therapy, but my focus had always been on the person between the bars struggling for that first step.

Now, I was deeply humbled to have some incredible people inside those bars with me. I was the one teetering and struggling to stand and attempting a first step.

A young man (I later found out in conversation that he knew my oldest grandson) stood behind me, softly saying, “I got you,” as he held onto the strong Velcro belt that encircled me.

There was the physical therapist, small yet strong, who stood in front of me, gently nudging her foot beneath my left foot and urging me not to put any weight on my foot. She talked to me about what she planned to do on her upcoming vacation to California.

I recall the gentle slap to my hand as I tearfully admitted my pain level. On a scale of 1 to 10, it was a 9.

The beautiful, sassy young registered nurse assured me she’d return with medication and that I’d be “fine.”

There were the daily visits of the soft-spoken nurse practitioner who knelt beside my bed and proclaimed my leg looked good and was healing well.

During the course of nearly a month, I was often seated in a welcome shower with an occupational therapist who shared the plans of her teenage son’s prom and the description of his tuxedo while teaching me how to shower with my weight on only one foot.

I’m grateful to the strong male aide who I discovered loved brown-eyed Susans as much as I do. We discovered this as he lent me his strength as I made the “slide transition” from a commode to my bed.

I could go on and tell about the woman on evenings who always made me laugh and showed me pictures of her beautiful 14-year-old granddaughters. I could tell you about the ever-helpful young aide who shyly told me her dream is to become an RN.

These people and others will forever be a part of a most difficult, yet hopeful, part of my life. They are part of a highly professional and uncommonly compassionate group of caregivers. We are fortunate to have them in our community.

In mid-June, I rolled in a wheelchair down a ramp on the side of my house, constructed by my 12-year-old grandson and my husband. I sat in my backyard, listened to the birds, felt the breeze on my face, stretched out my healing leg to the sun. I’m fine.

Upstate Health magazine fall 2018 issue coverThis article appears in the fall 2018 issue of Upstate Health magazine. The essay originally appeared on Syracuse.com, where Jackie Warren-Moore regularly writes. She is a poet and playwright whose latest book is “Where I Come From” (Nine Mile Books, 2016).

Posted in bones/joints/orthopedics, health care, patient story, physical therapy/rehabilitation, surgery

7 facts about stroke you probably didn’t know

A stroke is a brain emergency, so if a stroke is suspected, call 911 immediately to summon medical help. About one-fifth of strokes happen when a blood vessel bursts. The rest happen when an artery is blocked. The treatment for each type is different, so doctors must quickly determine which type of stroke is happening.

A stroke is a brain emergency, so if a stroke is suspected, call 911 immediately to summon medical help. About one-fifth of strokes happen when a blood vessel bursts. The rest happen when an artery is blocked. The treatment for each type is different, so doctors must quickly determine which type of stroke is happening.

Are you aware of the following facts about stroke?

  1. People having strokes usually are able to hear and comprehend what’s happening around them. That’s because the parts of the brain responsible for hearing and comprehension are rarely affected by stroke, explains Upstate stroke neurologist Hesham Masoud, MD. The exam he conducts on patients reveals how much the stroke is affecting comprehension and their ability to express themselves, and he talks to the patients as he conducts the exam, since he knows they can probably hear him.

  2. If doctors believe you are having a stroke, an imaging scan is essential. About 20 percent of strokes happen when a blood vessel bursts. About 80 percent happen because of a blockage to an artery. The treatment for each is very different, so doctors must determine which type of stroke is happening, and fast.

  3. Up to a third of the people who appear to be having strokes turn out to have other medical problems that mimic strokes. Plenty of medical conditions (including seizures or urinary tract infections) cause a person to behave in an unusual way, to have an altered mental status or trouble talking. “Any neurologic deficit that is new is a stroke until proven otherwise,” Masoud says. He implores people to seek emergency care promptly.

  4. A short-term stroke whose symptoms resolve is a harbinger of a larger, more damaging stroke. They may be labeled TIA, transient ischemic attack; RIND, reversible ischemic neurologic deficit; or mini stroke. Regardless, “Any stroke is brain damage, and any stroke needs to be treated,” says Masoud. “If you have a neurologic symptom that is sudden in onset, whether it improves or not is irrelevant to me. I want you to come to the emergency department immediately, and I want you to be worked up for it. If it’s something minor, you may get your workup as an outpatient in the clinic. You may not need to be admitted. But the first step is not to make that assumption.”

  5. Many people have medical conditions that increase their risk for stroke – but don’t realize they have these conditions. Two of the biggest are uncontrolled high blood pressure and an irregular heart rhythm. These conditions are sometimes discovered after a person has a stroke, and their treatment becomes important in prevention of additional strokes.

  6. About a quarter of stroke patients may not learn why their stroke happened. The cause may not be readily apparent in 20 percent to 30 percent of patients. Doctors may be able to pinpoint a reason as they care for a patient, but sometimes, especially in younger patients, the cause remains a mystery.

  7. Rehabilitation can make a huge difference in a patient’s recovery. Masoud often shares brain scans with patients and loved ones to facilitate discussions about the extent of damage. He explains that the length and quality of rehabilitation, and the patient’s level of engagement, influence how much functional recovery he or she will have. That’s why early on, he declines to make recovery predictions for individual patients.

While waiting for an ambulance to arrive, be sure the patient keeps breathing and make a list of his or her medications for the medical personnel.

While waiting for an ambulance to arrive, be sure the patient keeps breathing and make a list of his or her medications for the medical personnel.

3 ways to help while you wait for the ambulance

If you call 911 because you suspect someone is having a stroke, here’s what you can do before the paramedics arrive:

  • Make sure the person continues breathing, and if his or her condition changes, make another call to 911.

  • Take note of the time the person was last seen behaving normally. Doctors need this information to help determine treatment options.

  • Assemble a list of the medications the person takes, or collect the medication containers to bring to the hospital.

Source: Nurse Josh Onyan, stroke program manager at Upstate

Upstate Health magazine fall 2018 issue coverHealthLink on Air logoThis article appears in the fall 2018 issue of Upstate Health magazine. For a “HealthLink on Air” interview about stroke with stroke neurologist Hesham Masoud, MD, and stroke program coordinator and nurse Josh Onyan, click here. For an interview about ways to lessen your stroke risk, with stroke nurse Michelle Vallelunga and registered dietitian nutritionist Rebecca Hausserman, click here.

Posted in brain/neurology, emergency medicine/trauma, health care, stroke

‘A perfect example of why we became doctors’: Survival depended on a medical team, skillful surgery and a patient’s will to live

Pat Graham and his wife, Margery Lipinski-Graham, a year after his life-saving surgeries. (photo by Susan Kahn)

Pat Graham and his wife, Margery Lipinski-Graham, a year after his life-saving surgeries. (photos by Susan Kahn)

BY AMBER SMITH

Pat Graham of Lansing wasn’t feeling well the evening of Aug. 31, 2017. A self-described borderline diabetic, he asked his wife to bring a glucose test kit when she came home from her job at Rite-Aid. By the time she arrived, Graham felt worse.

He was in no pain. He just felt lethargic. Something wasn’t right. “You better get me an ambulance. I just don’t know what’s happening,” he said to her.  

Turns out, Graham had an aggressive, life-threatening infection. He remembers being loaded into an ambulance but was unconscious until he was transferred to Upstate University Hospital, where myriad doctors, nurses and technicians worked to save his life.

“He came in very sick and basically had to be taken to the operating room emergently, just to stabilize him,” says Joe Jacob, MD, one of the urologic surgeons who took care of Graham. “If he wasn’t taken to the operating room immediately, the infection would have killed him.”

Gennady Bratslavsky, MD, and Graham greet each other at the Urology Outpatient Center at Upstate's Specialty Services Center, 550 Harrison St., Syracuse.

Gennady Bratslavsky, MD, and Graham greet each other at the Urology Outpatient Center at Upstate’s Specialty Services Center, 550 Harrison St., Syracuse.

At age 59, Graham faced a grim decision from his hospital room. The odds were not in his favor. When he arrived at Upstate, a team of doctors diagnosed Fournier’s gangrene (see explanation below), and it was clear that the bacterial infection ravaged his body. He could go home and prepare for an imminent death. Or, he could submit to a risky operation to remove the infected tissue. “He had only a 10 percent chance of survival,” recalls his wife, Margery Lipinski-Graham. Graham decided he wanted to live.

Within the next 10 hours, Graham would undergo two major operations, the first by Jacob and the second by Gennady Bratslavsky, MD, the chief of urology at Upstate. They removed more than 60 pounds of infected tissue.

During that scary time, one thing stood out to Graham. Bratslavsky asked his wife for her cellphone. Nervous and confused, she handed it over. The surgeon punched in his personal number and handed the phone back, telling Lipinski she should call him — anytime — with any concerns.

Graham spent 20 days in the hospital, many of them in the care of surgeon Lucy Ruangvoravat, MD, and her team in the intensive care unit. Life-threatening infections like the one Graham had frequently have detrimental effects on the heart, lungs, kidneys and other organs, requiring the advanced intensive care for which Upstate is known. Ruangvoravat says many of her patients with severe infections are transferred to Upstate from hospitals in surrounding counties, so they can benefit from the expertise of the ICU team, comprised of doctors from a variety of specialties.

Graham, shown here with his wife, says, “Without Dr. Bratslavsky and Dr. Upadhyaya and the team of people working with them, I wouldn’t be here today.”

Graham, shown here with his wife, says, “Without Dr. Bratslavsky and Dr. Upadhyaya and the team of people working with them, I wouldn’t be here today.”

Graham’s surgical wound, left open to heal, continued to drain. He underwent another surgery, this one with plastic surgeon Prashant Upadhyaya, MD, to have more dead tissue removed. Upadhyaya closed the wound. Graham’s recovery progressed.

“I think the reason he did so well is because he was so motivated,” Upadhyaya says. “He did exactly what we told him to do. He and his wife were a great team.

“He’s a perfect example of why we become doctors.”

Graham was within hours of death when he arrived at the hospital. Swift medical intervention, skillful surgery and a will to live pulled him through. For the health care providers involved, says Upadhyaya, “It’s very gratifying.”

Graham has a scar stretching about three feet, from one hip to the other. “Without Dr. Bratslavsky and Dr. Upadhyaya and the team of people working with them, I wouldn’t be here today,” he says.

A big part of Graham’s recovery hinged on improving his overall health. That meant losing substantial weight. Bratslavsky expected Graham would do it. “I could sense that, for him, this had been a life-changing experience.”

Bratslavsky challenged Graham: Could he change the way he ate to improve his health? Could he eat vegetables and healthy proteins and ditch the sodas, the pizzas, the pastas and breads?

“When he told me this, it sounded like it was going to be the end of the world,” Graham admits. “But after a couple weeks, I didn’t even miss it.” A year later, he’s dropped 190 pounds.

What is Fournier’s gangrene?

A bacterial infection that grows from a small cut or pimple in the groin area may develop into a life-threatening condition known as Fournier’s gangrene. People with diabetes or a compromised immune system are more prone to this type of aggressive infection.

Its progression can be sudden, rapidly causing multiple organ failure and death. Even with swift medical care, antibiotics and surgery, the death rate is high. Fournier is the name of the French doctor who described five cases in clinical lectures in 1883.

From left: Urology chair Gennady Bratslavsky, MD; trauma surgeon Lucy Ruangvoravat, MD; patient Patrick Graham; Graham’s wife, Margery Lipinski-Graham; plastic surgeon Prashant Upadhyaya, MD; and urology residents Jeffrey Spencer, MD; Priyanka Kancherla, MD, and Garrett Smith, MD. (photo by Susan Kahn)

From left: Urology chair Gennady Bratslavsky, MD; trauma surgeon Lucy Ruangvoravat, MD; patient Patrick Graham; Graham’s wife, Margery Lipinski-Graham; plastic surgeon Prashant Upadhyaya, MD; and urology residents Jeffrey Spencer, MD; Priyanka Kancherla, MD, and Garrett Smith, MD. (photo by Susan Kahn)

Upstate Health magazine fall 2018 issue coverThis article appears in the fall 2018 issue of Upstate Health magazine. 

Posted in health care, infectious disease, patient story, surgery, urology, weight loss | Tagged

Up close: Cancer cells on the move

Some scientists have said the search for CTCs is like looking for a needle in a haystack. One millimeter of blood contains a few million white blood cells, around a billion red blood cells, and – perhaps – one to 10 circulating tumor cells. (illustration by Dan Cameron)

Some scientists have said the search for CTCs is like looking for a needle in a haystack. One millimeter of blood contains a few million white blood cells, around a billion red blood cells, and – perhaps – one to 10 circulating tumor cells. (illustration by Dan Cameron)

“You’ve got to respect the complexity of cancer,” Dario Marchetti, PhD, reminded researchers who gathered for his lecture at the Upstate Cancer Center recently. Marchetti is the director of the biomarker research program at the Institute for Academic Medicine at the Houston Methodist Research Institute.

Upstate frequently hosts guest speakers.

Marchetti spoke about efforts to detect the presence of circulating tumor cells, known as CTCs. These are cells that break off from a tumor and travel through the bloodstream. Most die in the blood, but some embed in tissues of distant organs, where they may form new tumors.

That’s what happens most often in the case of brain cancer. Marchetti says just one in 10 cases arise from a tumor that originated in the brain. The rest are cancers that spread from other parts of the body.

The Food and Drug Administration has approved one CTC test, CellSearch, which helps doctors monitor patients with metastatic breast, colorectal or prostate cancers by tracking the volume of CTCs in the blood. But it is not designed to find all CTCs.

Other methods of isolating CTCs are in development. Researchers want to be able to analyze CTC DNA to identify tumor progression and potential drug targets. That would allow doctors to determine the most effective medications without subjecting the patient to a tissue biopsy.

Cancer Care magazine summer 2018 coverThis article appears in the summer 2018 issue of Cancer Care magazine.

 

 

 

 

 

 

 

Posted in cancer, health care, research | Tagged , ,

These recipes make use of cruciferous vegetables

Upstate family physician Kaushal Nanavati, MD, says research shows cruciferous vegetables can potentially reverse the buildup of plaque in arteries, helping to improve circulation.

“We don’t have medications that can do that,” he says. “And yet, this food can be of benefit.”

And not just for heart health.

Cruciferous vegetables are rich in nutrients including carotenoids, vitamins C, E and K, folate and minerals. They’re also high in fiber.

The National Cancer Institute explains that during food preparation, chewing and digestion, the glucosinolate in cruciferous vegetables breaks down into biologically active compounds that are being examined in research laboratories for their anticancer effects.

So, here’s your shopping list: arugula, asparagus, bok choy, broccoli, Brussels sprouts, cabbage, cauliflower, collard greens, kale, radishes, rutabaga, spinach, turnips, watercress and wasabi.

Here are four recipes featuring cruciferous vegetables (to read how Nanavati includes healthy eating as part of one’s overall wellness, click here):

fresh broccoliEasy Baked Broccoli Tots

Ingredients

2 medium heads broccoli, cut into florets

¼ cup onion, finely diced

¼ cup finely ground bread crumbs or gluten-free pretzels

1 large egg

¼ cup grated Parmesan cheese

Ranch dressing or ketchup, for dipping

Nutritional information per 6 tots

60 calories

2 grams total fat

25 milligrams cholesterol

120 milligrams sodium

8 grams carbohydrate

1 gram fiber

1 gram sugar

4 grams protein

Preparation

Preheat the oven to 350 degrees. Grease a nonstick baking sheet with cooking spray.

Bring a large pot of water to a boil. Add the broccoli florets to the water and cook just until fork tender, about 5 minutes. Thoroughly drain the florets and transfer to a food processor. Pulse the broccoli for a few seconds just until the it breaks down into small pieces. (Do not overmix the broccoli or the mixture will be too wet to form into tots.)

Measure out 3 packed cups of the broccoli and add it to a large bowl. Add the diced onion, bread crumbs, egg and Parmesan cheese and mix until thoroughly combined.

Using your hands, portion out about 2 tablespoons of the mixture and mold it into a tater-tot shape.

Arrange the tots on the prepared baking sheet, spacing them about 1 inch apart.

Bake the tots for about 20 minutes. Then flip them once and bake them an additional 10 to 15 minutes until crisped. Remove the tots from the oven and serve them with ketchup, ranch dressing or hummus for dipping.

Source: JustaTaste.com

bowl of coleslawAngie’s Dad’s Best Cabbage Coleslaw

Ingredients

1 medium head cabbage, shredded

1 large red onion, diced

1 cup grated carrots

2 stalks celery, chopped

1 cup white sugar

1 cup white vinegar

¾ cup vegetable oil

1 tablespoon salt

1 tablespoon dry mustard

Black pepper to taste

Nutritional information per serving

131 calories

8 grams total fat

Zero cholesterol

364 milligrams sodium

14 grams total carbohydrate

1½ grams fiber

12 grams sugars

1 gram protein

Preparation

In a large bowl, combine cabbage, onion, carrots and celery. Sprinkle with 1 cup sugar and mix well. In small saucepan, combine vinegar, oil, salt, dry mustard and pepper. Bring to a boil. Pour hot dressing over cabbage mixture and mix well.

Cook’s note: Best if made ahead, from a day to two weeks. Just drain juice prior to serving. This makes 20 servings.

Source: AllRecipes.com

grapefruitRaw Kale, Grapefruit and Toasted Hazelnut Salad

Ingredients

2 pink grapefruit

½ small red onion, thinly sliced, divided

fresh kale¼ cup fresh lemon juice

½ cup fat-free plain yogurt

2 tablespoons extra-virgin olive oil

½ teaspoon kosher salt

¼ teaspoon black pepper

8 ounces kale, very thinly sliced or  baby kale leaves

1 ounce toasted hazelnuts, chopped (1/3 cup)

Nutritional information per serving

184 calories

12 grams fat

bowl of hazelnuts1 milligram cholesterol

18 grams carbohydrate

3 grams fiber

179 milligrams sodium

5 grams protein

Preparation

Peel and segment grapefruit, reserving 3 tablespoons juice in a large bowl. Mince 2 rings onion. Add to grapefruit juice, with lemon juice, yogurt, oil, salt and pepper. Whisk until well mixed.

Then, toss in kale. Top with remaining onion, grapefruit and hazelnuts. Makes four 1¾ cup servings.

Source: Health.com

green peasCauliflower Risi e Bisi

Ingredients

2 tablespoons extra-virgin olive oil

½ cup sliced scallions

3 cloves garlic, minced

4 cups cauliflower rice, fresh or frozen

bowl of grated Parmesan cheese2 cups peas, fresh or frozen

½ teaspoon ground pepper

¼ teaspoon salt

2 tablespoons water

1 cup whole milk

2 teaspoons cornstarch

½ cup grated Parmesan cheese

2 tablespoons chopped fresh parsley, plus more for serving

Nutritional information per 1-cup serving

160 calories

8 grams fat

10 milligrams cholesterol

256 milligrams sodium

15 grams carbohydrates

4 grams fiber

6 grams sugars

7 grams protein

Source: EatingWell.com

Cancer Care magazine summer 2018 coverThis article appears in the summer 2018 issue of Cancer Care magazine.

Posted in diet/nutrition, health care, recipe

Mind-set to thrive optimizes quality of life

Kaushal Nanavati, MD, leads meditation in the meditation room at the Upstate Cancer Center. In the back, from left, are medical students Megan Taggart and Alison Stedman and intern Amani Mike. (photo by Susan Kahn)

Kaushal Nanavati, MD, leads meditation in the meditation room at the Upstate Cancer Center. In the back, from left, are medical students Megan Taggart and Alison Stedman and intern Amani Mike. (photo by Susan Kahn)

BY AMBER SMITH

A cancer diagnosis can produce stress, no doubt. How a person responds to that stress impacts his or her quality of life.

Family medicine doctor Kaushal Nanavati, MD, is medical director of integrative therapy at Upstate. He reminds his patients who have cancer that no one is guaranteed to live another day, regardless of whether they have cancer.

“If we distress about the fact that we might not have a tomorrow, we’re missing out on the today,” he says“That sounds very simplistic, but when you live it, it shifts your thinking, and it shifts your biochemistry.”

A recent study from the National Human Genome Research Institute showed that social interaction during cancer treatment can affect a patient’s response to treatment. That finding does not surprise Nanavati.

He also believes a calm, nurturing treatment setting can have an impact and that being around people who exude positivity is beneficial — although neither have been proven scientifically.

What we do know is that people who are stressed or anxious trigger a stress response in their body that increases heart rate, blood pressure, respiration and muscle tension — conditions that can be detrimental if they become chronic.

Nanavati promotes a “core four” for wellness that consists of stress management, good nutrition, physical exercise and spiritual wellness. He’s liable to prescribe yoga, or meditation, along with conventional medical care. And he helps patients learn how to optimize their quality of life after they receive a diagnosis of cancer. He helps them believe they can not only survive, but thrive.

HealthLink on Air logoCancer Care magazine summer 2018 coverThis article appears in the summer 2018 issue of Cancer Care magazine. To hear Kaushal Nanavati, MD, discuss overall wellness in podcast/radio interviews, click here and here.

Posted in alternative/integrative medicine, cancer, diet/nutrition, fitness, health care, mental health/emotional health, spiritual care | Tagged

A dad’s perspective on his child’s cancer

Theron Blair’s elder son, Trey, 7, has leukemia. In the two years since his son’s diagnosis, Blair has learned what it takes to be the parent of a kid with cancer. He shares his insights:

Theron Blair of Baldwinsville with his sons Tyler, 5 (left), and Trey, 7. Chemotherapy left Trey bald for a while, and now that his hair is growing back, he's not cutting it. Now, Trey has daily oral chemotherapy medication and sees pediatric oncologist Andrea Dvorak, MD, and nurse Yvonne Dolce monthly at the Upstate Cancer Center. (photo by Robert Mescavage)

Theron Blair of Baldwinsville with his sons Tyler, 5 (left), and Trey, 7. Chemotherapy left Trey bald for a while, and now that his hair is growing back, he’s not cutting it. Now, Trey has daily oral chemotherapy medication and sees pediatric oncologist Andrea Dvorak, MD, and nurse Yvonne Dolce monthly at the Upstate Cancer Center. (photo by Robert Mescavage

  • Answer the phone when your wife calls

My wife phoned from the grocery store and said she’d gotten a call to take Trey to the hospital. We’d taken him to the pediatrician because his legs hurt and his stomach was bothering him. A blood test showed Trey’s iron was low.

When we got to the Upstate Golisano Children’s Hospital, they sat us down and explained that he had acute lymphoblastic leukemia (see box, below). Within

24 hours, Trey was in surgery having a port put in his chest for chemotherapy.

It was April 23, 2015.

  • Shave your head

Early on, when Trey had heavy chemo treatments, his hair started falling out. I’ll never forget him saying, “Dad, why is this happening to me?” as he looked in the mirror. That day, I shaved my head, so we’d be matching bald guys.

Last April, his brother, Tyler, shaved his head to raise money for pediatric cancer research.

  • Learn to give shots

Everything is hard when your child has cancer, but giving chemotherapy injections at home is really difficult. Your child is going through a lot, and you have to put him through more. But you’ve got to learn to do it, and do it well, so he can get healthy.

  • Invest in paper towels

Everything needs to be extra clean, so you can avoid exposing your child to infection. Wash your hands. Use paper towels and disinfectant wipes. (Sponges and cloths spread germs.) Don’t be afraid to tell friends and neighbors, “You have a runny nose? Don’t visit!”

  • Pay attention to both sons

“Doesn’t my brother like me any more?” was our younger son’s fear when Trey came home from the hospital. Tyler had welcomed Trey home with a punch which, in the past, would have led to wrestling, but Trey didn’t feel good.

Children understand more than you think, so listen and talk with them about what’s happening.

  • Be understanding

Trey had times when he couldn’t control his anger because he was on steroids. He would say, “Mommy, I’m yelling at you, and I don’t like it.”

Help your child understand that it’s the medication, and the condition, that are affecting his actions. Remind both children that they have good hearts.

  • Eat healthy

Steroid treatments made Trey crave salt. Salty foods made his edema (swelling) so bad that he couldn’t walk. We knew we had to change our diets, so we set ground rules. Now our sons know, “We have to eat something healthy first.”

Trey likes broccoli, and Tyler likes bell peppers. Once in a while, we have pizza and ice cream, but fresh vegetables are every day.

  • Stay positive

Try to stay positive, even when things are rough.

What kind of cancer is that?

Acute lymphoblastic leukemia, abbreviated as ALL and sometimes called acute lymphocytic leukemia, is the most common type of childhood leukemia.

ALL is a fast-growing cancer that develops in lymphoblasts, which are immature forms of the white blood cells called lymphocytes found in the bone marrow.

The cancerous cells can build up, crowding out normal cells, then spill into the bloodstream and spread to other parts of the body.

If not treated, ALL would probably be fatal within a few months.

The usual treatment is a varied course of chemotherapy that typically lasts two to three years.

Source: American Cancer Society

Cancer Care magazine summer 2018 coverThis article appears in the summer 2018 issue of Cancer Care magazine.

 

 

 

Posted in cancer, health care, mental health/emotional health, patient story, Upstate Golisano Children's Hospital/pediatrics | Tagged , , , ,

National media featuring Lola Muñoz raise attention for deadly brain cancer

Lola Muñoz hoped the treatment she received in a clinical trial would help other cancer patients. (photos by Moriah Ratner)

Lola Muñoz hoped the treatment she received in a clinical trial would help other cancer patients. (photos by Moriah Ratner)

BY AMBER SMITH

Photographs of a 12-year-old patient of Melanie Comito, MD, accompanied recent stories in the Washington Post and National Geographic magazine. Lola Muñoz lived for 19 months after her diagnosis with a deadly brain cancer called DIPG, diffuse intrinsic pontine glioma.

She died in April.

Upstate pediatric cancer chief Melanie Comito, MD, gives Lola a goodbye hug.

Upstate pediatric cancer chief Melanie Comito, MD, gives Lola a goodbye hug.

Lola chose to participate in a clinical trial of a new combination of chemotherapy drugs to treat DIPG, even though the treatments would make her sick. “I wasn’t doing it for me. I was doing it for all the other kids who suffered,” she told photographer Moriah Ratner, who recently graduated from Syracuse University’s S.I. Newhouse School of Public Communications. Ratner spent almost 18 months taking pictures of Lola and her family, including parents Melissa and Agustin Muñoz.

DIPG is a tumor of the nervous system that forms in the glial tissue of the brain and spinal cord. It typically grows rapidly, spreading through the brain stem, making treatment difficult. Surgery is usually not an option because of the precarious location of the tumor. Radiation can shrink the tumor, but it usually grows back within the year.

Comito, chief of pediatric hematology and oncology at Upstate, was one of Lola’s doctors. For 20 years she has not been able to offer much in the way of treatment for children with this type of brain cancer. She recently attended a medical symposium and felt the excitement in the room as researchers discussed the potential of a new targeted therapy they want to try.

One of the reasons research focuses on DIPG is because of families like the Muñozes, who share their story to raise awareness, Comito says. “She was a very special person,” she says of Lola, “and I think Moriah captured that in her photos.”

(Related story: Teen with DIPG launched H.O.P.E.)

Nurse Kristen Thomas draws Lola’s blood for tests at Upstate after six weeks of radiation.

Nurse Kristen Thomas draws Lola’s blood for tests at Upstate after six weeks of radiation.

Cancer Care magazine summer 2018 coverThis article appears in the summer 2018 issue of Cancer Care magazine.

 

 

 

 

Posted in brain/neurology, cancer, drugs/medications/pharmacy, health care, patient story, Upstate Golisano Children's Hospital/pediatrics | Tagged ,

How to protect yourself from colorectal cancer

Jiri Bem, MD

Jiri Bem, MD

Sekou Rawlins, MD

Sekou Rawlins, MD

 

 

 

 

 

 

 

 

BY AMBER SMITH

Colorectal cancer kills some 50,000 men and women in America every year. The death rate could decrease by 90 percent, says Jiri Bem, MD, medical director of Upstate’s colorectal oncology program.

“If everybody would be compliant with recommendations in terms of screening and surveillance, the number would drop to 5,000, which is clearly a striking difference,” he says.

Cancers of the colon and rectum are largely preventable. The majority of these cancers begin in polyps that can be removed — if they’re found before they’ve developed into cancer and spread. Most cancers found at screening are curable.

Screening recommendations

Bem recommends people at average risk of colorectal cancer start screening at age 50 and continue at least through age 79. Those at higher risk may need to begin screening earlier, and several gastroenterology societies say African-Americans should start at age 45.

People at increased risk of colorectal cancer include those with a personal history of colorectal cancer or certain type of polyps, a family history of colorectal “cancer, a personal history of inflammatory bowel disease (such as ulcerative colitis or Crohn’s disease), a confirmed or suspected hereditary cancer syndrome or a personal history of radiation to the abdomen or pelvis to treat a previous cancer. (Hear Bem speak about colorectal cancer and its prevention in this podcast/radio interview.)

Types of screening tests

Stool tests can be used to detect blood or to examine genetic changes that may occur in colon cancer cells.

Two options provide a look at the structure of the inside of the colon and rectum for abnormal areas that might be cancer or polyps. In a colonoscopy, the doctor inserts a flexible camera into the rectum to inspect the interior walls of the intestine. A virtual colonoscopy is an imaging scan. For both tests, the patient must empty his or her colon by consuming only liquids and a bowel preparation solution prior to the test.

Signs and symptoms

“Many people who are diagnosed with colon cancer don’t have any symptoms, which is why the screening strategies are so important,” says Upstate gastroenterologist Sekou Rawlins, MD. “A lot of people felt perfectly normal, and then they had their cancer found.” (Hear Rawlins discuss colorectal cancer screening and colon health in this podcast/radio interview.)

Contact your doctor if you notice

— A change in bowel habits, such as diarrhea, constipation or narrowing of the stool that lasts for more than a few days.

— A feeling that you need to have a bowel movement that’s not relieved by having one.

— Rectal bleeding with bright red blood.

— Blood in the stool, which may make the stool look dark.

— Cramping or belly pain.

— Weakness or fatigue.

— Unintended weight loss.

Prevention

These steps may help reduce your risk, but there’s no sure way to prevent colorectal cancer.

  • Maintain a healthy weight.
  • Participate in regular moderate physical activity.
  • Eat a diet high in vegetables, fruits and whole grains, and limit your intake of red meats and processed meats.
  • Avoid excessive alcohol use.
  • If you smoke, quit.

Do you need an appointment?

For help scheduling a colonoscopy, contact the Upstate Cancer Center at 800-464-4673 or Upstate Gastroenterology at 315-464-1600.

Cancer Care magazine summer 2018 coverHealthLink on Air logoThis article appears in the summer 2018 issue of Cancer Care magazine.

 

Posted in cancer, digestive/gastrointestinal, health care, prevention/preventive medicine

15 words for the newly diagnosed

abstract display of letters of the alphabet

Understanding this vocabulary may help you understand your cancer

Active surveillance – a treatment plan that involves closely watching a patient’s condition but not giving any treatment unless there are changes in test results that show the condition is getting worse.

Adjunct therapy – treatment used together with the primary treatment.

Adjuvant therapy – additional treatment given to lower the risk that cancer will return.

Acute – symptoms that begin and worsen quickly; opposite of chronic.

Biopsy – a procedure in which cells are removed from a suspicious area, so they can be looked at in a laboratory to see if cancer cells are present.

Chemotherapy – treatment using drugs that stop the growth of cancer cells, either by killing the cells or stopping them from dividing. Depending on the type and stage of cancer, drugs may be given by mouth, injection, infusion, or absorbed through the skin.

Clinical trial – a research study that tests how well new medical approaches work in people.

Combination therapy – therapy that combines more than one method of treatment; also known as multimodality therapy.

Immunotherapy – treatment that stimulates or suppresses the immune system to help the body fight cancer, infection or other diseases.

Metastasize – to spread from one part of the body to another.

Oncology – the branch of medicine specializing in diagnosis and treatment of cancer.

Prognosis – likely outcome or course of a disease.

Radiation therapy – killing cancer cells or shrinking tumors through the use of high-energy radiation from X-rays, gamma rays, neutrons, protons and other sources.

Stage – the extent of cancer in the body, usually based on tumor size and whether nearby lymph nodes contain cancer.

Tumor – also known as neoplasms, tumors are abnormal masses of tissue that result when cells divide more than they should or do not die when they should. Some are benign (not cancerous), and others are malignant (cancerous).

Source: National Cancer Institute

Cancer Care magazine summer 2018 coverThis article appears in the summer 2018 issue of Cancer Care magazine.

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