CANCER & SICKLE CELL SUPPORT PROGRAMS

Vol. 14 No. 2 Spring 2020 Newsletter/Calendar

Notice: As of this printing, all programs described within are temporarily on hold. We look forward to resuming activity as soon as possible. Please keep safe, stay tuned, and feel free to call for updates at 617-638-7540.

I fully share Dr. Kulke’s excitement in extending our programs to adult sickle cell patients! It’s further testament to BMC’s commitment to see its patients in their full humanity. To all sickle cell patients: We welcome your participation and input as we continue to develop and expand our programming.

To all readers: Please take some moments to learn more about Sickle Cell Disease on pages 2 and 8. And please help us welcome all new patients who join in our programs!

Lastly, during this period of uncertainty, let us all reflect and be kind, patient, careful, and protective of one another... and find the silver linings...

All flower and plant photos by Olga Bedoya

In recent years, we have seen a dramatic change in cancer treatment. In many cases, it has transformed cancer from an untreatable condition to a condition that can be managed and even cured.

Along with providing new cancer therapies, we have created extensive support programs for our cancer patients that address the non-medical aspects of their care. These support programs have played a critical role in improving the lives of our cancer patients, both during and after their treatment.

We are now at the beginning of a similar transformation in the care of our patients with sickle cell disease. These patients can face similar challenges to our cancer patients. As we develop and provide new and better treatments for our sickle cell patients, we also need to make sure they have the other support they need.

Dear Patients and Providers,

I am pleased to announce the expansion of our Cancer Support Programs to also include our adult patients with sickle cell disease.

Matthew Kulke, MD Chief, Hematology/Oncology, BMC, and Co-Director, BU/ BMC Cancer Center

We are an institution that is at the forefront of sickle cell research and care. I am thrilled that we will now be bringing our wonderful support services to patients with sickle cell disease!

Sincerely,

From Bob David, Manager:

THE PATKIN SICKLE CELL

CENTER

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What is Sickle Cell Disease?

Normal red blood cells are round and flexible. They travel easily throughout the body by way of small blood vessels.

When blood passes through the lungs, hemoglobin, the iron protein in the red blood cells, picks up oxygen from the lungs.

As the red blood cells continue to circulate, the hemoglobin delivers the oxygen to the cells of all the organs and other parts of the body.

In Sickle Cell Disease, abnormal hemoglobin causes a number of the red blood cells to change shape. Instead of being round and flexible, these cells become curved like a crescent moon or a sickle (an old farm tool for chopping tall grass). They also become rigid and sticky.

These ‘sickled’ cells can hurt the body in two ways. First, they die early, causing a constant shortage of red blood cells (anemia), which makes a person feel tired, weak, and irritable.

Second, they jam up some of the small blood vessels, preventing healthy red blood cells from carrying oxygen to where it needs to go. This can result in severe pain crises, infections, and other serious health conditions.

Learn about Sickle Cell Disease

The Story of Sickle Cell Disease

Genes are a set of instructions that you inherit from your parents. They determine how your body looks and functions.

Genes do this by directing your body to make various proteins out of the chemical elements inside you. Proteins are what build and maintain every part of your body throughout its lifetime.

One important protein your body makes is hemoglobin. Hemoglobin is the protein in red blood cells that does the job of transferring oxygen to all the cells in your body.

Thousands of generations ago, for some people, the genes responsible for the making of hemoglobin mutated, or changed their instructions. This happened as a natural defense for people who were subject to the deadliest type of malaria. The new instructions were to make hemoglobin that could chemically stop the growth of the malaria parasites that had invaded the blood.

Sickle Cell Disease is the most frequently occurring genetic disease on Earth. It affects an estimated 100,000 children and adults in the United States alone. Boston Medical Center is the largest sickle cell center in New England with treatment for both adults and children. It is also home to a cutting-edge research lab focused on finding a cure.

continued on page 8

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Feature Programs

MUSIC IN MOAKLEY

Inês Andrade is an accomplished pianist who has performed across Europe and the USA. She has a Doctorate in Musical Arts from Boston University. As a current Fellow in the BU Arts | Lab, she is spending Tuesday mornings playing and teaching piano in our Cancer/Sickle Cell Center. You can find her in the small sitting area by the elevators on the 3rd floor. Call to sign up for lessons, or simply drop by on a Tuesday between 10:00AM and 12:00PM to listen and to learn.

PAINTING WORKSHOP with Jonathan the Painter>Reservations required.Thursday, May 28, 5-7pmFGH Bldg, Ground Floor

Jonathan “the Painter” is an inspiring and encouraging teacher. No experience needed, all materials provided.

RECIPE SWAP & POTLUCKTuesday, June 16, 6:15-8pmMoakely Lower Level

Write out a favorite healthy recipe. If you have the time, prepare the dish.

Then bring both to share. We discuss the recipes and cooking techniques, have a good time, work up an appetite, and then eat! Don’t miss this multi-cultural treat. You are welcome to participate even if you cannot bring anything.

MUSEUM of FINE ARTS TOURFriday, May 8, 1:45-3:30pm465 Huntington Ave., Boston *Use group entrance on Museum Rd.

An informative tour of several exhibits led by volunteer guides. Meet at the Museum.FREE PASSES to the Museum, good anytime, are available from our office.

Art Workshops w/Nora ValdezApril - September >Info on back page

Healing Spaces

Support Groups

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• Our support groups are open to all patients/survivors, regardless of when and where they may have been treated.

• Registration is not required, but it’s best to call ahead to let us know you are coming and for any additional information.

• Family members and friends are welcome (though men only to the men’s groups, women only to the women’s groups).

• Most groups meet monthly.

• Food, free parking, and limited transportation home are provided.

Participation by PhoneIf you cannot attend a meeting, you may be able to participate by speakerphone. Please let us know in advance (617-638-7540) to arrange the call.

One-to-One Peer SupportIf you would like to speak one-to-one with someone who has had a similar disease and/or treatment experience as you’ve had, let us know and we can likely find someone who will be happy to speak with you.

Support groups offer a unique opportunity for current patients and long-term survivors alike to get to know others who have had similar disease and treatment experiences as their own. In a safe and confidential environment, participants may share details of their experience, ask questions, and offer knowledge and insights that doctors usually cannot provide. True support, encouragement, and uplifting energy are the norm.

Sometimes a doctor or specialist is invited to give information on treatments and self-care and to answer questions; but the heart of the group is always patients talking to patients. Generally what is gained in these groups can seldom be found elsewhere.

The role of caregiver to a cancer or sickle cell patient

can be very challenging. If you feel stressed, have questions, or would just like to talk about the situation, our staff is available.

Caregiver Support

Please call 617-638-7540 to request a convenient telephone or

in-person appointment.

Groups meet monthly unless otherwise noted. LOCATIONMOAKLEY BLDG830 Harrison Ave.

unless otherwise noted NAME DAY TIME

Cancer by Type

BLOOD 2nd Wed. 1-3p

3rd Floor Conference Rm

BREAST 1st Tues. 5-7p

GASTROINTESTINAL (GI) 1st Fri. 12:30-2:30p

GYNECOLOGICAL (GYN) 2nd Mon. 12-1:30p

LUNG 2nd Thurs. 12-2p

PROSTATE 2nd Tues. 5-7p

HEAD & NECK 1st Wed. 12-2p Lower Level Conference Rm

Cancer by Population Group

WOMEN (any cancer) 3rd Wed. 12:30-2p Lower LevelConference Rm

MEN (any cancer) Last Mon. 12-2p

3rd Floor Conference RmHAITIAN CREOLE-speaking 2nd Thurs. 5-7p

SPANISH-speaking Last Tues. 5-7p

YOUNG ADULTS (ages 18-39) Call Molly at 617-582-9617 early evening Dana Farber

Cancer Institute

Sickle Cell & other diseases

SICKLE CELL DISEASE 2nd Fri. 6-7:30p Yawkey Bldg, Basem’t Conf. Rm

AMYLOIDOSIS(Not shown on calendar) Every Tues. 12-1:30p 3rd Floor

Conference Rm

SARCOIDOSIS(Not shown on calendar) 3rd Thurs. 6:30-8p FGH Bldg, Ground

Floor Conf. Rm

Additional Support

SPIRITUALTIY 1st Tues. 3-4:30p 3rd Floor Conference Rm

OSTOMYcolostomy/ileostomy/urostomy 3rd Thurs. 2-3:30p Lower Level

Conference Rm

CAREGIVERS Telephone or in-person support sessions available. See page 4.

BEREAVEMENT For those who have lost a loved one to cancer. Call for info.

*Check calendar on pages 9,10, and 11 for changes in schedule. Call 617-638-7540 to be on the reminder list for specific groups.

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Our ongoing activity groups speak to the interests of many. People get to know one another in the context of skill-building and mind/body activities.

• Registration is not required, but it’s best to call ahead to let us know you are coming and for any additional information.

• Family members and friends are welcome.• Free parking is provided for most groups.

NAME DAY TIME LOCATIONMind and Body

OBSERVER MIND Learning & practicing how to be mindful. 2nd Mon. 5:00-6:30p

Moakley Lower Level

YOGA Gentle and relaxing. Mats provided.

Every Tues. & Thurs. 5:00-6:15p

BODY • ENERGY • AWARENESS • MOVEMENT(BEAM) Exercises to loosen joints, fine-tune movements, and balance energy.

Every Wed. 4-6p

HEALTHY STEPS Exercises to improve lymphatic drainage, range of motion, flexibility, and balance.

3rd Wed. 6:15-7:15p

ZUMBADance exercise for all levels of fitness. 1st & 2nd Wed. 6:15-7:15p

Handiwork KNITTING

No experience necessary. Instructions and materials provided.

Last Wed. 6-8p Moakley Lower Level

ARTS & CRAFTSSimple, fun projects.

All materials provided.3rd Thurs. 5-7p

Moakley 3rd Floor

Conference Room

Diet and Nutrition

COOKING LESSONS for:Cancer (shown on calendar)

3rd Wed. 2:30-3:30p

Yawkey 2nd Floor Teaching Kitchen

Diabetes 1st & 3rd Wed. 12-1p

Weight Management3rd Tues. 11a-12p

3rd Wed. 5:30-6:30p

General Health 3rd Tues. 4-5p

*Check calendar on pages 9,10, and 11 for changes in schedule. Call 617-638-7540 to be on the reminder list for specific groups.

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Support Activities

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OBSERVER MIND - Bob DavidOur thoughts and feelings greatly affect our mood, stress level, and peace of mind. Research shows more and more how they also affect how our body functions.Participants in these monthly sessions learn and practice a series of short meditations designed to help them observe their thoughts and feelings. By observing, we become less controlled by these thoughts and feelings. We see things more clearly and gain power and choice. This also opens the door to greater self-discovery and awareness.

HEALTHY STEPS - Susan DeCristofaroA routine of guided exercises that are engaging and therapeutic. They aim to improve lymphatic drainage, range of motion, flexibility, and balance. They are particularly beneficial to those who have had breast surgery with removal of lymph nodes.

ZUMBA - Cyrena GasseFun dance exercise inspired by Latin and international rhythms. The classes are for all levels of fitness and ability. You’ll definitely have the opportunity to get a good physical workout!

COOKING LESSONS- Olivia Weinstein

Registered Dietitian Olivia Weintstein, the head of BMC’s fabulous Teaching Kitchen, demonstrates how

to make tasty, easy, healthful dishes and provides recipe sheets and samples.

YOGA - Betsy Simmons and othersTwice-weekly classes at BMC. Safe exercises in stretching, deep breathing, and relaxation help to reduce pain, fatigue, and back and joint aches. They may also help with insomnia and anxiety. Classes are tailored to the needs of the participants.

B•E•A•M: BODY • ENERGY •

AWARENESS • MOVEMENT - Bob DavidA series of low-impact exercises, some set to music, designed to help us:

• activate and loosen the joints• isolate, stretch, and strengthen

muscles• free up and fine-tune movements• improve coordination• tune into and release body tension• focus on balance and weight shift• feel and unify energy throughout

the body

In this weekly class there is often a fine line between what is exercise, Tai Chi, dance, and meditation. We cross all the lines. The activities and movements are healthful, satisfying, and relaxing. The overall goal is awareness of internal energy and greater awareness, comfort, and facility with our bodies.

KNITTING - Patty Doggett & volunteersKnit and socialize with other survivors. Materials, patterns, and instruction are provided for all levels of experience.

ARTS & CRAFTS - Pat Oliver and Cyrena GasseFun, simple craft projects. All materials are provided. Come get creative!

Activity Descriptions

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American Cancer Society Free resources and services from the American Cancer Society are available through the BMC Oncology Patient Navigation Program. For help with wigs and for information on one-to-one mentorship programs for breast cancer, cancer education classes, and more, call Madeline Booth at 617-414-0914. For info on other ACS services and events, call Nicole Sanders O’Toole at 508-897-4344.

ACUPUNCTURE CLINICAcupuncture is a 2,500-yr-old method of treating pain and many other symptoms. Beth Sommers, PhD, MPH, LAc, has 40+ years experience in this field. She offers sessions to BMC adult sickle cell patients and to BMC cancer patients currently or recently in treatment. Thursdays, 9am-12pm, Moakley Bldg, 3rd floor. To request an appointment, call Bob at 617-638-7540.

As malaria has continued through the ages to be a serious health threat, so has this gene mutation continued to provide a natural defense. People today who have Sickle Cell Trait or Sickle Cell Disease are much more resistant to malaria than everyone else.

However, on the negative side, the abnormal hemoglobin produced by the mutated genes also causes some of the red blood cells to change their shape. Instead of being round and flexible, they become sickle-shaped, hard, and sticky. These sickle cells can potentially clog up blood vessels and prevent healthy red blood cells from delivering oxygen. Also, sickle cells die early, reducing the overall supply of red blood cells.

A person has Sickle Cell Trait when they have this mutated gene. In Sickle Cell Trait, the body makes enough abnormal hemoglobin to resist malaria. But there is not enough sickling of cells to cause problems in the amount and in the circulation of healthy red blood cells.

The Story of Sickle Cell Disease continued from page 2

Complementary ServicesGroup offerings by BMC’s Program for Integrative Medicine are changing. Look for an update in our summer edition. Or contact 617-414-6264 or integrative.medicine@bmc.org for info.

A person develops Sickle Cell Disease when they inherit Sickle Cell Trait from both parents. In this case, too many sickle cells are produced. Because these sickle cells die early, there is a constant shortage of red blood cells in the blood stream (anemia), leading to fatigue, weakness, and irritability. And the larger number of sickle cells more easily clog the blood flow, causing severe pain crises and other serious health problems.

If both parents have Sickle Cell Trait, there is a 25% chance their child will inherit Sickle Cell Disease. If it is inherited, the child will likely start to show symptoms at the early age of 4 to 5 months.

Sickle Cell Trait and Sickle Cell Disease mostly affect people of African descent. Others affected are people of Middle Eastern, Indian, Mediterranean, Caribbean, or Central or South American descent. t

Mon Tues Wed Thurs Fri Sat Sun

1Head/Neck CSG 12-2pB • E • A • M 4-6pZumba 6:15-7:15p

2 Yoga 5-6:15p

3 4 5 GastroInt. CSG 12:30-2:30p

6 7Spirituality SG 3-4:30p

Breast CSG 5-7p Yoga 5-6:15p

8Blood CSG 1-3pB • E • A • M 4-6pZumba 6:15-7:15p

9 Lung CSG 12-2pHaitian CSG 5-7pYoga 5-6:15p

10 11 12“Healing Spaces” 5-7:30p FGH Bldg

Sickle Cell SG 6-7:30pYawkey Basem’t Conf. Rm

13GYN CSG 12-1:30p Observer Mind 5-6:30p

14Prostate CSG 5-7p Yoga 5-6:15p

15 Women’s CSG 12:30-2pCooking Lessons 2:30-3:30pB • E • A • M 4-6pHealthy Steps 6:15-7:15p

16Ostomy SG 2-3:30pArts & Crafts 5-7p Yoga 5-6:15p

17 18 19“Healing Spaces”

2-5p FGH Bldg

20 21Yoga 5-6:15p

22B • E • A • M 4-6p

23Yoga 5-6:15p

24 25 26

27Men’s CSG 12-2p

28Spanish CSG 5-7p Yoga 5-6:15p

29B • E • A • M 4-6pKnitting 6-8p

30Yoga 5-6:15p

black = Moakley 3rd Floor Conference Rm green = Moakley Lower Level red = Moakley Lower Level Conference Rm orange = Yawkey 2nd Floor Teaching Kitchen blue = other location

April 2020 Call 617-638-7540 to confirm schedule.

SG = Support GroupCSG = Cancer Support Group

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Mon Tues Wed Thurs Fri Sat Sun

1 2 3GastroInt. CSG 12:30-2:30p

4 5Spirituality SG 3-4:30pBreast CSG 5-7p Yoga 5-6:15p

6Head/Neck CSG 12-2pB • E • A • M 4-6pZumba 6:15-7:15p

7Yoga 5-6:15p

8 9 10Museum of

Fine Arts Tour 1:45-3:30p

Sickle Cell SG 6-7:30pYawkey Basem’t Conf. Rm

11 GYN CSG 12-1:30p Observer Mind 5-6:30p

12 Prostate CSG 5-7p Yoga 5-6:15p

13Blood CSG 1-3pB • E • A • M 4-6pZumba 6:15-7:15p

14Lung CSG 12-2pHaitian CSG 5-7pYoga 5-6:15p

15 16 17“Healing Spaces” 5-7:30p FGH Bldg

18

19Yoga 5-6:15p

20 Women’s CSG 12:30-2pCooking Lessons 2:30-3:30pB • E • A • M 4-6pHealthy Steps 6:15-7:15p

21Ostomy SG 2-3:30pArts & Crafts 5-7p Yoga 5-6:15p

22 23 24“Healing Spaces” 5-7:30p FGH Bldg

25

MEMORIAL DAYClinics Closed

> Men’s Ca gp moved to 6/1

26Spanish CSG 5-7p Yoga 5-6:15p

27B • E • A • M 4-6pKnitting 6-8p

28Yoga 5-6:15p

Painting Workshop

5-7p FGH Bldg

29 30 31

black = Moakley 3rd Floor Conference Rm green = Moakley Lower Level red = Moakley Lower Level Conference Rm orange = Yawkey 2nd Floor Teaching Kitchen blue = other location

May 2020 Call 617-638-7540 to confirm schedule.

SG = Support GroupCSG = Cancer Support Group

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Mon Tues Wed Thurs Fri Sat Sun

1Men’s CSG 12-2p

2Spirituality SG 3-4:30pBreast CSG 5-7p Yoga 5-6:15p

3Head/Neck CSG 12-2pB • E • A • M 4-6pZumba 6:15-7:15p

4 Yoga 5-6:15p

5 6 7GastroInt. CSG 12:30-2:30p

8GYN CSG 12-1:30p Observer Mind 5-6:30p

9Prostate CSG 5-7p Yoga 5-6:15p

10Blood CSG 1-3pB • E • A • M 4-6pZumba 6:15-7:15p

11Lung CSG 12-2pHaitian CSG 5-7pYoga 5-6:15p

12 13 14“Healing Spaces” 5-7:30p FGH Bldg

Sickle Cell SG 6-7:30pYawkey Basem’t Conf. Rm

15 16Yoga 5-6:15pRecipe Swap

& Potluck 6:15-8p

17 Women’s CSG 12:30-2pCooking Lessons 2:30-3:30pB • E • A • M 4-6pHealthy Steps 6:15-7:15p

18Ostomy SG 2-3:30pArts & Crafts 5-7p Yoga 5-6:15p

19 20 21“Healing Spaces” 5-7:30p FGH Bldg

22 23Yoga 5-6:15p

24B • E • A • M 4-6pKnitting 6-8p

25 Yoga 5-6:15p

26 27 28

29Men’s CSG 12-2p

30Spanish CSG 5-7p Yoga 5-6:15p

black = Moakley 3rd Floor Conference Rm green = Moakley Lower Level red = Moakley Lower Level Conference Rm orange = Yawkey 2nd Floor Teaching Kitchen blue = other location

June 2020 Call 617-638-7540 to confirm schedule.

SG = Support GroupCSG = Cancer Support Group

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PATRICE OLIVER, Assistant617.414.5773patrice.oliver@BMC.org

BOB DAVID, Manager617.638.7540robert.david@BMC.org

CYRENA GASSE, Assistant617.414.5726 cyrena.gasse@BMC.org

FGH Building, 2nd Floor820 Harrison Ave.Boston, MA 02118

www.bmc.org/cancer/support-services

BU College of Fine ArtsThe Boston University College of Fine Arts has canceled its theater and musicalperformances for the spring season. The fall season starts early October. All performances will again be offered free to our patients.

A project made possible by a grant from the New England Foundation for the Arts’ Creative City Boston Program, with funding from The Barr Foundation

Healing SpacesArt Workshops for

Cancer & Sickle Cell Patients & Families

with Nora Valdez & guest artists (noravaldez.com)

The Healing Spaces Art Workshops will take place over six months at Boston Medical Center, with a few sessions at the Dana Farber Cancer Institute.

Patients/survivors from both facilities, along with their family members, are invited to participate together in as many of the sessions as they would like. Food will be provided.

The energetic and enthusiastic Nora Valdez, along with several guest artists, will lead workshops in a variety of expressive media. At the end, Nora will assemble the works created into three movable, thematic “houses” to display at BMC, Dana Farber, and Urbano (an urban arts center in Jamaica Plain).

All patients whose efforts contribute to the workshops will be represented in the final exhibit. Come and be a part of this exciting, collaborative venture!

Nora Valdez is an international, award- winning sculptor and

community artist from Argentina. Her work has

been exhibited and installed in public spaces in Europe, Asia, North & South America, and many states in the US.

FGH Building 820 Harrison Ave

(outdoors in nice weather)Ask about FREE PARKING

Two FRIDAYS/month5:00-7:30-ish pm

May 15May 22

June 12June 19

July 17July 31

Aug. 14Aug. 28

Sept. 11Sept. 18

Apr. 10 Apr. 17 (2-5pm)