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10 Ways to Help a Friend With Cancer

21 Feb

By SULEIKA JAOUAD  & SEAMUS MCKIERNAN

If it takes a village to raise a child, you might say it also takes one to care for the sick. Cancer is at once personal and communal. Disease lives in the sufferer’s body but the experience of illness is shared, often intimately, by our loved ones. And yet, caring for the sick can feel like writing a travelogue about a country you’ve never visited. You can’t know where you haven’t been.

“What can I do to help?”

This is the sincere, often reflexive, response people have when they find out I have cancer. When I was diagnosed with leukemia last May at the age of 22, my boyfriend, Seamus, sprung into action as my CCO: chief care-giving officer, after my parents. As the news of my diagnosis spread, my friends, acquaintances — and even some strangers — formed a loving support network. It was a comforting reminder of how selfless people can be.

But while most of my friends and family would help me in a heartbeat, knowing how to help can be a daunting, even paralyzing, challenge. Over the past eight months, through seven hospitalizations and six rounds of chemotherapy, Seamus and I have sustained a running dialogue about what it means to be a caregiver and a care recipient; what it means to be in love with one another while my body’s at war with itself.

This guide to helping a friend with cancer is built from parts of our many conversations on the subject of care giving.

    1. Say “I don’t know what to say” — A cancer diagnosis can paralyze the lines of communication between friends. Some people freeze up and don’t say anything at all, while others dwell on finding the “perfect” words. If you’re at a loss for words, say so. If you have a lot to say but don’t know where to start, say that, too. Honesty rules. I’ve never felt offended by someone who doesn’t know what to say, but I’ve felt hurt by those who don’t call or write at all. Don’t let the perfect be the enemy of the good.
    2. Be an equal opportunity listener — Cancer is a gloomy subject — there’s no pretending otherwise. While your instinct can be to immediately steer the conversation towards the cheerful, it’s vital for a cancer patient to feel comfortable venting feelings of fear, sadness, anger, loss, and isolation. One of the most important things you can do as a friend is to make it clear that you are willing to listen to both the good and the bad.
    3. Assess the specifics — Cancer patients are often too tired or too polite to respond to the broad question of “How can I help?” Take the lead and ask specific questions. Without being pushy, you’ll find areas where you can step in: Who is going to look after them during the day? Can they prepare their own meals? What about transportation? Are there other people close to the person with cancer who also need support?
    4. Do what you do best — Do what comes from the heart and follow through. Remember that the patient doesn’t expect you to compose a song if you don’t play an instrument. Lending a hand is easier when you do what’s in your wheelhouse. If you love to cook, drop off a homemade dish; if you’re an artist, make something to hang on the hospital room wall; if you’re an organizer, offer to gather research or to take notes during medical appointments.
    5. Take care of yourself — You hear it a lot: caregivers must take good care of themselves, too. No matter how upset or stressed out you are about your friend’s illness, it is critical to be selfish about your own health. Nutrition is important, especially because “comfort foods” beckon in times of stress. Regular exercise, even walking, is crucial for the body as well as the mind: some of the best thinking happens when your body is in motion. Perhaps most important of all is getting enough sleep. Love does, in fact, have boundaries. You must take care of yourself to be the best ally to your friend.
    6. “No need to write me back.” Since my diagnosis, I’ve been showered with the warmth of letters, emails and cards of support. These messages, filled with love and positive energy, are my daily reminders that I’m not alone in this struggle. But finding the energy to write back can feel like an herculean task. Dissolve any potential stress for the patient by reminding him or her that there’s no need to respond or write a thank-you note.
    7. Distraction is a godsend — While you should be careful joking about cancer (everybody’s sensitivity differs), some juicy gossip, a funny joke, or a good movie can go a long way in lifting someone’s spirits. Humor may feel out of place next to IV bags and bedpans, but it can be an essential counterweight to the gravity and absurdity of cancer. Don’t feel like you can’t be the bearer of good news. Bring magazines, music, stories and sunshine.
    8. Get involved in the cause — As someone who will be receiving a bone marrow transplant this spring, I am deeply moved by my friends who have signed up to become bone marrow donors or taken time to learn about my disease. Sign up to be a bone marrow donor, give blood, organize a fundraiser, or donate a sum (however small) to cancer research or an organization of your choice. It’s a gesture acknowledging that cancer affects communities of strangers as well as the people you know.
    9. “It’s time for me to go” — Long visits don’t necessarily mean better ones. Visits needn’t be rushed, but keep in mind that the sick person doesn’t have the same energy level as you do. Be attentive to signs that the patient needs to rest.
    10. I love you If there’s ever a time to tell a friend how much you care about them, this is it.

 Follow @suleikajaouad on Twitter and on her Facebook Page.

Seamus McKiernan is an associate blog editor at The Huffington Post.

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The ABCs of My Disease

7 Jan

By SULEIKA JAOUAD 

Accepting my diagnosis was difficult enough, but understanding the medical jargon that accompanied it felt as though I was learning a foreign language. A really hard one.

Although my initial bone marrow biopsy results in May 2011 revealed that I had Acute Myeloid Leukemia (AML), following further discussion and deliberation, my doctors determined that I actually have Myelodysplastic Syndrome (MDS), a disorder of the blood and bone marrow.

At first, this didn’t make sense to me: how could the tests results say I have one disease, and the doctors another?

I learned that, in my case, the difference between AML and MDS is a question of semantics. MDS, formerly known as ‘preleukemia,’ is characterized under the ‘French-American-British’ (FAB) classification system as less than 30% myeloblasts (leukemic cells) in the bone marrow. Patients with a blast count higher than 30% are considered to have AML. Under the second system of classification devised by the World Health Organization (WHO), MDS is defined by less than 20% myeloblasts.

My biopsy results showed that I had 20% blasts in my marrow, meaning that by one count, I had Acute Myeloid Leukemia, and by the other, I had a late-stage form of Myelodysplastic Syndrome.

Confusing, right?!

What was clear from the get go, however, is that my disease was high-risk and very advanced when it was discovered. By the time I was diagnosed I was already very ill. I was bedridden, suffered from painful mouth sores that made talking and eating very difficult, and had frequent infections due to my compromised immune system. My white blood cells (the infection fighting cells) and red blood cells (which deliver oxygen to your blood) were very low. The biopsy results also showed many chromosomal abnormalities in my marrow, with both an atypical number of chromosomes and structural abnormalities.

This all meant that I needed intensive chemotherapy right away and a bone marrow transplant (now called a stem cell transplant) as soon as my blast count could be reduced to under 5% and as many of the chromosomal abnormalities as possible could be erased. The only cure for my disease is a transplant. Although the chances of a successful transplant for someone in my situation are not as high as I wish they were (30-40%), I can only hope that I will land on the right side of the statistics.

In June 2011, I received one round of induction chemotherapy using a ‘7+3’ regimen (7 days of Cytarabine and 3 days of Daunorubicin). I spent almost 6 weeks in the hospital in ‘isolation’ and was finally released on July 7, 2011, 2 days after my 23rd birthday. My blood counts never quite recovered from this kamikaze blast to my system, and following this treatment, I was even sicker than before. A bone marrow biopsy showed that the treatment had had virtually no effect on the disease. I was completely bald, 20 pounds lighter, and dealing with increasingly painful sores in my mouth and throat. It was (literally) difficult to swallow the notion that these weeks of suffering had been for nothing.

One month later, I began a low-dose chemotherapy clinical trial, comprised of a combination of Azacitidine and Vorinostat. This treatment was supposed to improve my quality of life and allow me to live at home, while also aiming to get me into remission. As it turned out, this treatment proved, in some ways, more difficult than the first. I’ve now completed four rounds of the clinical trial over the past 5 months. I’ve had many side effects from the treatment (nausea, vomiting, chronic fatigue, neutropenic fevers, and mucositis). The most unexpected aspect of this experience, is how much time I’ve spent in hospital and unable to get out of bed. Since beginning this treatment, I have been hospitalized 6 times and have spent over 2 months of the past 6 months in the hospital for various infections and complications. On a more positive note: biopsy results in October showed that the treatment seemed to be working and that my blast count had been reduced from 20% to 4% and that there had been an overall decrease in the number of chromosomal abnormalities.

Today, I find myself at a crossroads. Last week, I received some startling news: my latest bone marrow biopsy showed that my blast count has gone up and that the number of chromosomal abnormalities hasn’t changed since October. This could mean that my disease is getting more aggressive and is no longer responding to treatment, in which case I would need to proceed to transplant immediately. My doctors have issued a second test and on Wednesday, I will have a better understanding of the situation.

If I’ve learned anything since falling ill, it’s that the road to recovery is rarely straight and without potholes. Although I never feel prepared for bad news from my doctors, I know to roll with the punches and to take things as they come, one minute–one day at a time.

Follow @suleikajaouad on Twitter and on her Facebook Page.

Good Afternoon, You Have Cancer

7 Jan

By SULEIKA JAOUAD

One rainy spring morning in Paris, I woke up with flu-like symptoms and decided to take a “me” day from work. Little did I know, I would never return.  Three months later, exactly one year after graduating from college, I found myself in the oncology ward of a New York City hospital, undergoing my first of many courses of chemotherapy.

Back in France, my doctor had attributed my symptoms to burnout syndrome, an umbrella diagnosis that might well apply to any sleep-deprived college grad in her first year out in the “real world.” He sent me home to the US with orders to rest.  But when I continued to feel unwell, I did what all doctors tell you not to do: I typed my symptoms into Google.  There were hundreds of matching hits but the word cancer jumped off the screen.  I can remember the momentary chill I felt in seeing that word, but I promptly dismissed it: life-threatening illnesses, after all, only happen to other people.

My Internet search proved ominous at my next doctor’s visit:  “Acute Myeloid Leukemia,” my doctor said, his voice quavering as I began to cry. Most people, while peripherally aware of their mortality, are unprepared to receive such news. In the time it took the doctor to utter those three words, my life suddenly felt like a house of cards, ready to collapse on my dreams for the future. I was 22 years old.  My friends were busy starting their lives, and I was worried that mine might end before it had really begun.

Everyone told me how difficult chemotherapy would be.  The doctors and nurses prepared me for what to expect, gave me pamphlets explaining the disease and its treatment, and guided me to websites and support groups. I learned to accept that when it comes to the medical treatment, my role is limited: I must trust the wisdom and instruction of my doctors and hope for the best.

Today, as I prepare for a bone marrow transplant, I’ve learned my biggest challenge is not just physical. It is enduring the boredom, despair, and isolation of being sick and confined to a bed for an indeterminate length of time. There have been remarkable advances in cancer treatment over the past few decades, but there is no magic pill to cure the emotional distress of illness. I have discovered it is up to me to help myself.

Through much trial and error, I am creating a roadmap for emotional health and spiritual wellbeing. The way I spend these long hours in bed holds remarkable power over the way I feel, both physically and psychologically. In the hope of helping the many others who share the struggle of a long and uncertain convalescence, I’ve decided to share my experience–the good and the bad, the deflating and the inspiring.

 

Follow @suleikajaouad on Twitter and on her Facebook Page.

A version of this post was published on the front page of the Huffington Post on 1/10/12. 

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