Patient Profile: Justin Salce

Justin Salce

Acute Myeloid Leukemia

When he was just 17 months old, Justin Salce was diagnosed with, and underwent treatment for, acute myeloid leukemia (AML). Justin is 17 years old now, and he doesn’t remember much about being sick. He says he remembers that the pizza at the hospital was good, but that’s about it. His mother, on the other hand, remembers it all very well. “He had been running a fever for close to two weeks and it would spike,” says Orlaida Salce, Justin’s mom, and even though she was told it was an ear infection, there were other symptoms, such as extreme bruising, that made Orlaida think that something more serious was going on.“People thought I was crazy,” says Orlaida who, despite all the tests coming back normal, says she just knew something was wrong. Justin was the fifth of six children and Orlaida was an experienced mom who knew what she was seeing was not normal. “She kept taking me in and they would say I was fine,” says Justin, but Orlaida didn’t give up. Finally, a test revealed the leukemia, which hadn’t shown up in the blood work because it was in the very early stages. Orlaida was told that the survival rate for AML was 25 to 30 percent, but that those statistics were based on adults because AML was rarely diagnosed in children.

When Justin started treatment he didn’t respond to the typical AML protocol and did not go into remission as expected. That’s when the doctor suggested doing a trial of a treatment program from the 1970s that was no longer being used. Orlaida says the program was very costly and not typically approved, but they were able to customize the trial for Justin. The doctor dubbed it the Justin Protocol and after an intense six months of chemotherapy that Orlaida describes as very harsh, Justin went into remission and has had no recurrence. “It wiped it out,” says Justin. “I just feel so lucky the program was made specifically for me.” While there’s been no other maintenance, Justin does require regular check ups to ensure he stays healthy. “He got a lifetime of chemo in six months,” Orlaida says, “so they monitor his heart.” That happens every three years now. “It used to be every year, but my results were stellar,” says Justin.

The first year though, Orlaida says they basically lived in the hospital. She says it was a very lonely time and the stress took a toll on her. Shortly after a party celebrating Justin’s one year of remission, Orlaida says she ended up in the hospital. They never figured out what was wrong with her but decided it must have been stress-related. She says it was after Justin was in remission for five years that she could breathe a little easier. Her experience inspired her to volunteer with various cancer organizations. “I felt that the reason my son got sick was so I could help others,” she says. “I wanted to help other parents not feel as alone as I felt.”

Justin isn’t sure if having cancer affected the way he lives or not, “I was so young, I didn’t know any different,” he says, but it did affect Orlaida. “You don’t forget for the rest of your life,” she says. “I’m very blessed to have my child.” Both Orlaida and Justin say they feel lucky. “We got a second chance and we’re going to make the best of it,” says Orlaida.

Justin is now a senior in high school; he’ll be 18 in June, and he’s the picture of health. “I’m living a good life now,” he says. He likes computers, his favorite hobby is training at the gym, and he’s very health conscious. “He knows how precious health is,” says Orlaida. And, while he is doing very well, he’s not totally out of the woods. With cancer, there is always a chance it can come back and, in Justin’s case, he could encounter issues as a result of the intense chemotherapy. He doesn’t typically like to tell people he is a cancer survivor. “I feel like they’d treat me differently,” he says, but now, on the verge of adulthood and looking at his future, he’s ready to talk about the experience. “Sharing my story could help other people,” he says. “If I tell my story it could give them hope.”

Health Tips To Support A Senior Through Cancer Recovery

Cancer can happen at any age, but it’s most common in the elderly. The American Cancer Society explains 87% of all cancer cases in the United States are diagnosed in people 50 years old and over. Cancer in older age brings with it many unique problems, including, pain, depression, loss of strength and fitness, cognitive decline, and dementia. If you’re caring for an elderly cancer patient, it’s important you coordinate with their cancer team. Recovery plans focus on physical, social, and emotional health to give senior cancer patients the best quality of life possible.

Prepare healthy food

It’s never too late for anyone to start eating healthy. It’s important you give the elderly person you’re caring for enough nutrients from a variety of fruits, vegetables, dairy, pulses, and grains. Red and processed meat should be limited, or preferably avoided altogether. You should also check with their doctor whether they have any special dietary requirements.

Cancer patients often have reduced appetite. The key is to give them calorie-dense food — soups, smoothies, and stews, for example. It’s also important to set routine family meal times. Socializing is an important part of recovery.

Protect their safety

An elderly cancer patient is in a vulnerable position. Do your best to make sure they’re safe around the home before they return from the hospital. Install night lights in the hallways and bedrooms. Ensure carpet is securely fixed in place and remove loose rugs to prevent falls. They may need help with everyday tasks, such as, bathing, dressing, moving around, and going to the toilet.

Encourage exercise

Unfortunately, cancer treatment takes its toll on the body and mind. It often leaves patients fatigued, which is a feeling that can often strike without warning. Nonetheless, a gentle yet regular amount of physical exercise is highly beneficial seniors. Not only does it boost their mood, but it also helps improve mobility, strength, flexibility, and balance.

Give emotional support

Cancer treatment is stressful, but talking about it can help. While it’s up to the senior you’re caring for how much they open up, let them know you’re there for them if they want to talk. They may also be interested in joining a support group for practical advice.

Ultimately, it’s important your senior has a social and emotional outlet to support them and make them feel less alone. If you ever have any problems or concerns, let their cancer team know. You’ll be given as much help and support as you need.


About the Author: Chrissy Rose is a Content Manager and is working to build one of the best senior resource sites.

Patient Profile: Elizabeth Carswell

She was 25 weeks pregnant and felt like she had the flu. It was early July 2015 and she made her way to her obstetrician’s office because the antibiotics she’d taken over the Fourth of July holiday hadn’t made her feel better. A couple hours later Elizabeth Carswell was in the hospital being diagnosed with Acute Myeloid Leukemia. She was 33 years old.

“Obviously, the scariest part was the first two months when I was still pregnant,” says Carswell, known as Liz to her friends. She was immediately transferred to Jackson Memorial Hospital in Miami and began chemotherapy. “It was a very tough decision to be treated, but I wanted to meet my baby.”

The first two rounds of chemo were unsuccessful and her doctors wanted her to undergo a more aggressive treatment. That meant it was time to deliver the baby. Liz was 32 weeks along and the surgery was extremely risky. Her blood counts and platelets were considered too low for surgery, but despite it all, baby Hudson was born weighing in at 4 pounds. Liz continued her treatment in the hospital while Hudson was admitted to the NICU for five weeks.

When Hudson was released from the hospital, Liz was not. Her boyfriend, Hudson’s father, Frankie Lightfoot had to return home to work, so Liz’s father and her sister moved to Miami, rented an apartment near the hospital and cared for the baby. Liz was never alone. Her father and sister alternated caring for the baby and spending the night in the hospital with her. Her friends showered her with gifts for the baby and travelled to her bedside to decorate her hospital room. Meanwhile, her doctors were trying to ready Liz for a bone marrow transplant, but could never get her levels where they needed to be and eventually her Jackson Memorial team told her it was time to go home and spend whatever time she had left with her baby.

That’s when a friend connected Liz with the Leukemia and Lymphoma Society which led her to a clinical trial at the City of Hope Cancer Research Hospital in Duarte, California under the care of Stephen J. Forman, M.D., F.A.C.P. She went the next day. The trial involved very aggressive full-body radiation and a stem cell transplant. Her brother, a perfect 10 match, was her donor.

The transplant put her into remission. It was November 2015. Then, in August of 2016, she found some lumps in her breast. The leukemia had returned in mass form. More radiation and seven more rounds of chemo later she is technically in remission. But, due to a gene mutation that makes her highly likely to relapse, Liz continues with regular rounds of chemo for maintenance.

“My doctor expects recurrence,” she says. That’s why she will undergo another stem cell transplant within the next couple months. This time, from an unrelated donor so that a new immune system can be introduced. She will spend another six weeks in the hospital, but she believes this is what she has to do. “I know it’s needed,” she said. “I trust it’s needed. I trust my doctor. He’s pretty amazing.”

Liz is undaunted by what lies ahead. “There are lots of ups and downs, but a positive attitude is a must if you’re going to survive,” she says. Though she credits Hudson, now two, as her main motivation. Early on she felt it was Hudson growing inside her who was keeping her alive and now being his mother keeps her going. “I’m not scared to go through it again,” she says of her upcoming transplant. “I’m excited to do it again. I’ll do anything that will give me a chance to watch Hudson grow up.”

Liz has kept a record of her journey on her Facebook page, Prayers for Elizabeth. She continues to keep her page updated and in addition to helping her, she hopes that sharing her story can help others. You can keep up with Liz here.

Presentation Tips for Patient Advocates: Developing Effective Speaking Skills

As a patient advocate you may be invited to speak in public about your cause, and while some of you will relish this opportunity, many others will find it daunting. According to the National Institute of Mental Health, 74% of people suffer from speech anxiety. Surveys show that the fear of public speaking ranks as one of the most common phobias among humans. There’s even a name for it – glossophobia – the fear of public speaking. Whether you are daunted or excited by the prospect of speaking in public it pays to have a plan in place to communicate effectively.  For a presentation to impact an audience and be memorable, you must structure the content, design the slides, and use public speaking techniques effectively. Next time you are asked to deliver a presentation, follow this step-by-step guide designed to help you become a more confident, prepared, and persuasive speaker.

STEP ONE: PREPARE YOUR TALK

Good presentation skills begin with thorough preparation. Here are seven tips to help you prepare for your next talk.

1. Decide what you want to say. What is the purpose of this talk? What do you want your audience to know, feel, or do after they have heard you speak? Your presentation should have a purpose, something that the audience walks away eager to do. Write down your core message in one or two clear sentences. Include a call-to-action (CTA) detailing exactly what should happen next. If you find that you have several messages you would like to deliver, challenge yourself to focus and simplify your message. Once you have a clear focus for your talk, you can then group your other ideas around it.

2. Know your audience. Who will be coming to your talk? Why are they coming to listen to you? What do they already know about the topic you will be speaking on? Find out as much as you can about your audience so you can better speak to their interests and in the language they are most familiar with.

3. Do your research. Do you want to present facts and figures in your talk? Are there any research studies you could incorporate to make your core message stronger? Use online tools like Symplur, the Journal of Internet Research (JMIR), and Google Scholar to help you with your research.

4. Structure your presentation. Now it’s time to put your key messages and research points together in a structured way. Having a structure is a helpful roadmap to keep you on track and to allow the audience to follow along with your points. Start with astrong opening, for instance, share some compelling statistics, outline a current problem, or share a memorable anecdote. If you feel comfortable sharing a personal story, this is one of the most effective ways to get your audience to pay attention. Stories leave a lasting impression on listeners. Patient advocate Martine Walmsley points to the importance of sharing your patient story because the story “behind the diagnosis is a side researchers and clinicians don’t usually see. Don’t assume they already know those details.” (Read Why Your Patient Story Matters for more tips on how to tell your patient story). Healthcare consumer representative and patient experience consultant Liat Watson advises patients to speak from the heart. “People want to connect with you and your story”, she says, “Share like you are sitting around the kitchen table”.

Next, organize your main points into an order that will make sense to your listeners. Reflect on your key points and how you might emphasise them.  Finally, determine the take-home lesson (CTA) you want to close with and how you will convey this to your audience. Your CTA should transmit a sense of urgency. Why is it important they hear your message and act now?  What will happen if they don’t act?

5. Add visual interest. If you decide to use slides in your presentation aim to create highly-visual slides with minimal text. Never cram information onto your slides. Instead, present one idea per slide so the audience can process each point fully before being presented with another idea. By presenting only one point at a time the information is easier to understand, and the audience is less likely to experience information overload.  Avoid excessive use of bullet points, not only do they contribute to the phenomenon known as Death by PowerPoint, but they are also proven to be an ineffective method of communication for presentations. Take care when choosing fonts for your presentation– how you present your text is an important factor in making your slides clear and compelling.  Type Genius is a useful tool to help you find the perfect font type and which fonts complement each other.

For a change from the usual PowerPoint presentation, consider using an alternative such as Keynote (for Mac) Prezi or Haiku Deck. Whichever tool you decide on, your slides should be visually engaging.  Make good use of diagrams and charts and find some compelling images to hold your audience’s attention. When choosing an image make sure it is high resolution so that it will still look pleasing to the eye when it is blown up to full-screen proportions. Don’t be tempted to use an image you have sourced from a Google search unless the image is licensed “Creative Commons”. Instead look for images on sites such as Foter, Pixabay, and Unsplash, all of which gives you access to a bank of high resolution free-to-use photos. As a general rule of thumb, stick to one image per slide – anything more than that simply looks too cluttered.  If you want to add text to a background image, choose a background with plenty of “whitespace” which will allow the text to be read clearly. If your image is lacking whitespace, try applying a blur effect or a gradient fill when you want to add text to your background.

6. Stand and deliver.  Rehearse out loud using whatever slides, notes, or props you plan to use during your talk. Don’t simply practise by sitting at your desk clicking through your slide-deck; stand and deliver your talk as if you are doing it in front of an audience. Work on your voice intonation and emphasis, flow and transitions, and practise controlling filler words, like “ems” and “ahs” (Toastmasters Internationalpoints out too many fillers can distract your audience). Crohn’s disease patient, Nigel Horwood, who has spoken to a large audience of nurses at Kings College Hospital, London, UK, recommends reading your talk out loud when you are practising. “I find that simply reading through what I have written doesn’t pick up the likes of over used words or even ones that are missing. Much better to hear it being read,” he has written in his blog Wrestling the Octopus.

Modulate your speaking voice to a lower pitch (if you can do so without sounding unnatural); the deeper the pitch of your voice, the more persuasive
and confident you sound. In “The 5 P’s of Powerful Speaking for a Memorable Speech”, professional speaker Pam Warren points out that “in public speaking clarity and tone are far more important than volume in that they imply authority, a certain gravitas and above all, confidence.” When speaking on certain points you may want to stress their importance, so practise the power of the pause – a slight pause before you’re about to say something important.  Take a printed copy of your text and make marks, such as a forward slash (/) or use color coding in your paragraphs to remind you to pause at key points in your talk.

The most important thing you should practise is the opening of your talk. Focus on conveying a strong, confident start which will set the stage for everything that follows.  Time your presentation using a stopwatch, or one of the many free countdown timers available online. After practicing a few times on your own, ask a friend to listen to you. If you don’t want to do this, video or audio record your presentation so you can play it back and see how you might improve on delivery.

7. Final preparations. Make sure you have a good night’s sleep the night before your talk and have your clothes freshly pressed and ready on hangars. Back up your presentation to a flash drive (or the cloud), pack a plentiful supply of business cards and handouts (if you are using them). Health consumer advocate Melissa Cadzow recommends making it easy for people to follow up with you after your talk, by having a dedicated business card for your patient advocacy work. She also recommends including information on your LinkedIn and Twitter profiles and providing an email address in your presentation slides.

 

STEP TWO: DELIVER YOUR TALK

It’s the day of your big presentation. Plan to arrive early so you can familiarise yourself with the room, meet the technical team, check your slides are working correctly, and practice using the microphone.

When you take to the stage, resist the urge to begin speaking straight away. Take a few moments to ground yourself – set your feet slightly apart, toes pointing towards the centre back of the room (this gives you balance and is the most secure and comfortable way to stand when talking).  Pull your shoulders back and down – this allows your chest to expand, so you have more breath when you begin to speak.  Make eye contact and smile at your audience which will help to relax you if you are feeling nervous.
When you begin to speak, do so slowly and clearly to give your audience time to absorb your words. Remember to take full breaths between sentences.

Dealing with presentation nerves: Feeling anxious or being nervous before a big presentation is normal. If you feel nervous, focus on the fact that your audience wants you to succeed. They are on your side. You were chosen to speak and you are the expert they have come to hear. There’s no need to tell them that you are feeling nervous – people probably won’t even notice if you don’t mention it.  Whenever you feel those first signs of nerves such as a racing heart, sweaty palms and shallow breathing, bring awareness to the physical sensations, take some deep breaths and anchor yourself by touching something physical, such as a table or the slide advancer, or push your weight into your toes and feet.  It’s perfectly natural to feel nervous, but try to focus your attention away from your nervousness and concentrate instead on what you want to say to your audience. Recognize that nerves are a signal that this is something that matters to you. Turn your nerves into enthusiasm and passion for your topic.

 

STEP THREE: AFTER YOUR TALK

Spend time after the presentation to reflect on how things went. Ask yourself (or others) what you thought went well and what could have been better? Take some notes on which techniques worked to help calm your nerves, which stories resonated with the audience, and how you answered any questions in the Q&A.  The purpose of this exercise is to become a better presenter the next time you are asked to give a talk, by putting the lessons you learn each time into practice. Take every opportunity you can to practise speaking in public. Not only is it an important way to get your message out into the world, but mastering the art of public speaking is a wonderful way to boost your personal and professional confidence.


Editor’s Note: For another creative presentation design tool, please check out Canva.

Success is Being a Survivor

Author and 3X cancer patient, Jodie Guerrero

Author and 3X cancer patient, Jodie Guerrero

Success means so much – its definition is reflective of the heart & soul of the perceived successor. To me – Success is not just about chasing a dream and securing it – true success is a lot deeper than pushing through a physical barrier to win the prize on the other side.

I believe true success is flying in the face of danger, marching towards the fire and leaning towards the negative perception that your efforts will reap nothing or your existence is un-important.

Success is proving that your hunch was right, your dream was correct and your gamble paid off – NOT because you put in resources to get back (something for yourself). But, rather you gave your all for the good of others, for the delivery of kindness, for love in the form of understanding and ultimately sacrificial leadership for the fulfilment of a need in your community. Success can take many years and in most cases it does. It’s a gradual slope of hard work and its rewards are up there – on top of the mountain.

Why do I believe this? I am a survivor of cancer x 3, medical negligence, a disability as a result and currently 77 doses of cancer treatments to keep me alive and very soon a bone marrow transplant. I’ve seen people lose their fight, right in front of me. I’ve heard people tell me to be quiet and stop fighting for the suffering of others. Success is being a survivor and that’s what I am!!

What do we need to be a survivor? What do you need to be a survivor? A very important element for me has been faith and foundation. My faith is everything and the family who love me, combined with my faith are my foundation. Without a strong foundation – we may topple and fall, either mentally or emotionally. However, many people find other elements of underpinning to keep them strong, through the largest hurricanes of life.

Even with these ropes of strength in our greatest storms, we may still topple – however a secure footing will help us find it easier to rebuild again and seek help when we need it. This may include a shoulder to cry on, someone to take us to medical appointments/assist with medication or someone to call a Psychiatrist. There is nothing wrong with asking for help, I believe it proves our strength and resolve.

Being a survivor takes a strong desire to continue no matter what, a resolve to not listen to the masses or those who do not support you – this may include family and friends. Believe it or not, when we have a difficult health journey, people walk away – even folk who should not or those we thought we could rely on. Some of us often discern these individuals, as they run for the hills and never return, yes – even those who are related to us.

We may not understand this behaviour at the time, but often the ones that run cannot cope with our journey (even if it’s a long-term success) and in the end, we may find that these relationships weren’t contributing to our health anyway. For myself personally – of course, there are days when physically I find my daily duties difficult to fulfil – these days, I discipline myself to know & practice when I need a little extra medication/a little extra rest and a little extra prayer, these things are what survival currently look like for me.

After my Bone Marrow Transplant, I will have less cancer pain and more resolve to survive in a different manner – I will continue forward and enjoy each day blessed and given to me. I will enjoy every day granted to me with the family and friends who love me and the ones that have stuck around – they are the ones we are surviving for. They are the people who value our survival – we may not realise how many people around us cherish our life and the energy we put into surviving, however, I know most of us have a good handful and many more supporters after that.

Treasure the people who cling to you and love your survival – you are worth more than all the gold and jewels, on our beautiful planet – your life and the days you have are more significant than you could ever know – just ask the people who love you.

Thank you for reading, please feel free to contact Jodie at the following email address: Jodie@jodiesjourney.com

Advanced Care Planning – What to Do Now!

This is important! And often overlooked, neglected, procrastinated, or ignored…for many reasons. If you are an adult, you need to think about your future and your wishes and desires in terms of your health care. And you need to discuss these wishes and desires with those close to you. It is only by doing this that you can ensure that your choices will be heard.

Chicago Patient ForumIt is sometimes a difficult conversation to start, but those around you and close to you need to hear you. Start by thinking about quality of life, choices, and what is important to YOU. Think about who you can trust to listen to you and carry out your wishes if you are no longer capable of doing so.

If you are a cancer patient, think about what treatment options are available to you, what makes sense to you and what doesn’t. Do your research, talk to your provider or medical team and talk to those close to you. Then think about those discussions and what is important to you.

This is ultimately an individual and very personal decision. However, family members need to hear and respect your viewpoint, so include them in the conversation early on.

So many times, it happens that when a patient is unconscious or incapacitated in some way, family members get together and try to make decisions. Often, the family members cannot agree on what the patient would have wanted and their opinions and emotions cause conflict, anger and heartbreak. And then, since the patient never made her wishes clear, they are not carried out.

You can avoid this.

Take action now and start the conversation.

Once you have discussed your wishes with family members and loved ones, it is important to fill out the correct Chicago Patient Forumpaperwork. Medical directives are legal documents that will state your wishes and help to see that they are followed. But do not rely on medical directives alone. Be sure to talk to family members or others close to you.

According to a recent article in the New York Times, large national studies showed that although more patients are completing medical directives, these directives are not always available to hospital staff when they need to be. Patients often keep them filed at home and they do not find their way into patient medical records or into the hands of those caring for the patient in an emergency situation. Be sure and make your wishes know to those closest to you and give them a copy of your directives.

Advance Care Planning is also a process. You can change your mind and may do that as time progresses. Be sure and update family members as your wishes change.

You do not have to do this alone. There are numerous avenues of help.

Resources

There are many resources that help with Advanced Care Planning. One good website is The Conversation Project.

Here, you can find information, a “starter kit” to help you get your thoughts together and start the conversation with your loved ones. This kit is available in Spanish, French and Mandarin as well as English.

There is also a PDF on how to have the conversation with your doctor, in Spanish and French as well as English. The website has a blog with patient stories and stories from staff members and advisors.

MD Anderson has an entire web page dedicated to Advance Care Planning . Specifically for cancer patients, this page was developed by an interdisciplinary team of doctors, patients, social workers, health educators and other health care professionals.

On this page, you will find step by step guidelines on how to start discussions with family members, talk with your provider, assign a family member to be your spokesperson and how to complete the legal paperwork necessary. PDFs are available in English and Spanish.

There is also a 5 part video series explaining the process of Advance Care Planning in depth with patient viewpoints and advice on how to make the decisions and discussions go as easily as possible.

The MD Anderson web page also includes information on Advance Medical Directive documents such as Living Wills, Power of Attorney and Out of Hospital DNRs (Do Not Resuscitate) with links to the legal documents and instructions and advice on filling them out.

This page is an excellent resource and also includes a number to call for further questions.

Don’t hesitate. Start the conversation now.