Missing Pieces and Parts: Grieving for the Familiar

1. Missing Pieces and Parts: Grieving for the Familiar Kristi Schmitt Burr Executive Director Basal Cell Carcinoma Nevus Syndrome Life Support NetworkBurton, Ohio

2. Loss can be as simple as popping an artificial fingernail . . . Or stressing over where you put the car keys

3. But for the person with skin cancer

4. Contributing member of society or victim? Loved one or patient? Dependable co-worker Provider Spouse Caregiver Child The roles they have worked their entire lives to establish, may be changed in a second, with a snip, cut and cavernous hole or absent facial piece left behind in the office, on the stainless steel tray, never to be the same again.

5. Role of the Ear • Better to hear you with, my dear • Holds the glasses securely on the face • Achieves the symmetrical balance to the way others perceive you, and how you perceive yourself • Defines the hairline and style • Fits well below the cap, hat, chapeau

6. Before & After-Ear

7. Nose • Centerline to the face; • Establishes character, definition • Butterfly symmetry whether large or small • Place holder for glasses • Hides the sinuses, mucous, hair • Permits air passage • Creates an image

8. Before & After-Nose

9. Eyes • Sight • Balance • Symmetry • Expression, • Windows to the spirit and soul • Eyelashes, brows, color “Save the eyes, save the eyes, save the eyes!”

10. Ancestry, culture, heritage

12. Eyes: The windows to the soul: We still yearn and miss the faces that we were born with.

13. Losing his sight was difficult, but losing the respect of his family, unbearable, until reconstruction

14. Tell-Tale Signs • Chalazion • Missing Eyelashes • Pimple • Areas that Evaporates or Erodes • Scaly upper/lower eyelids • Bleeding on the eyelid

15. When surgery alters our looks, it alters who we believe ourselves to be • We begin to experience loss as a reflection of how people react to the visual field . . . now defined, not by character nor personality, but by the absence of a piece of skin.

16. Having a spare- provides security Losing one of the pair, (eye, ear, kidney), you become keenly aware that you no longer have a spare, and with any irritation you become more alarmed, fearful Consequence of losing olfactorysystem Smelling a gas leak Harmful substances, toxic food, infections Taste - Food becomes difficult to appreciate Aftermath

17. Where is the clean margin? Where is the origin? What is the prognosis? Ulcerative, morpheaform, nodular? Are we done yet?

19. Repair can rekindle hope and happiness, pride and synergy • Reconstruction • Prosthetics, implants, grafts, flaps

20. Social Acceptance • Can there be happiness, love and a bondedunion, following extensive skin cancer?

21. Affecting Long Term Family Relationships . . Who will care for severely affected children now adults when their parents cannot?

22. If sunscreen were really the answer, would these children be safe? Or are they destined to be isolated, apart from their friends?

23. High School Class president, voted “Most Congenial”, and now The Gorlin Advocate and proud Grandpa.

24. Who is that person looking back at us from themirror? Is perception the new reality?

25. What we dream, and what is real: we mourn the loss of our own perception of attractiveness, struggling with discovering our inner beauty & developing strength to cope.

26. Stage IV Metastatic Disease

27. There is no such thing as JUST a . . . Squamous Cell Basal Cell Small Melanoma Evolving Skin Tag Colored Mole Spitting Suture

28. Which require . . . • MOHS • Biopsy • Excision • Curettage To reveal . . . • Tumor • BCC • SCC • Melanoma

30. Everyone knows how to do a breast self exam but . . . Do you know how to do a skin self exam?

31. Head Shoulders Knees & Toes Knees & Toes Head Shoulders Knees & Toes Knees & Toes Eyes & Ears & Mouth & Nose Head Shoulders Knees & Toes Knees & Toes

32. Inheritance Factor Family histories and early intervention teams are essential for genetic counseling, reproductive knowledge and changing the course . . .

33. It is not just about the reconstruction, but accepting that which we cannot change How do you live in a neighborhood and be accepted, respected, and contribute to the community, when adults and children avoid you?

34. Biting Nails Over/Under Eating Smoking Emotional Social Vocational Acting Out Despondence Fear Isolation Anger Reclusion Obsessive behavior Sarcasm Separation Anxiety/Loss * At the St. Louis BCCNS Symposium in 2005, 50% of participants were at risk for clinical depression and in need of further assessment.

35. Skin Cancer is not a“Sexy Disease” • One in every four people will experience some form of skin cancer • Not a cocktail party subject • Suffers from public misconception • Personal inter-relations • Suppresses intimacy • Cannot hide the effects, the scars are visible; hence no relief from public scrutiny

36. US Cancer Statistics-2008 • Skin cancer is the most common form of cancer in the United States. More than one million skin cancers are diagnosed annually. • Each year there are more new cases of skin cancer than the combined incidence of cancers of the breast, prostate, lung and colon. • One in five Americans will develop skin cancer in the course of a lifetime. • Basal cell carcinoma (BCC) is the most common form of skin cancer; about one million of the cases diagnosed annually are basal cell carcinomas. Basal cell carcinomas are rarely fatal but can be highly disfiguring. BCC’s can metastasize and are responsible for severe morbidity and mortality. • In 2004, the total direct cost associated with the treatment for non-melanoma skin cancers was more than $1 billion. References: BCCNS Life Support Network; Skin Cancer Foundation

37. What can You do to help? • Pre-medicate to reduce anxiety • F/u calls after surgery that are initiated by the office • Referrals to support group, counselor, psychologist, patient advocate • “I’m so sorry!” Focus on what is good, healing, positive.What constructive things can you say/do? • Build a medical dermatology practice support team • CURE- Campaign for Urgency to Reduce and Eradicate Skin Cancer • BUDDY UP FOR SKIN CANCER • Much is expected, from whom much has been given

38. Hold a hand, save a soul

39. Early intervention • “Beauty may be skin deep, but the physical and emotional damage caused by skin disease affects a child for life.”Christine Tenconi, Children’s Skin Disease Foundation

40. It takes a NETWORK • Join and support patient advocacy organizations • Coalition of Skin Diseases, Cleft Palate Craniofacial Association, Commission on Dental Accreditation, Genetic Alliance, NORD

41. Thank you for your kind attention • Special thanks to our MAB Members: Dr. David Bickers, Columbia Univ.; Dr. Ervin Epstein, CHORI; Dr. John Hellstein, Univ. of Iowa; Dr. William Lynch, Univ. Dermatologists Inc.; Dr. Maulik Shah, Dr. Marc Levine, Ophthalmic Consultants & Surgeons of Cleveland, Inc. • Dr. Murad Alam, Northwestern Univ.; Dr. Simon Yoo, Northwestern Univ.; Sheila LaRosa, BCCNS Life Support Network; • In honored remembrance of: Dr. Robert Gorlin; Dr. Alan Oseroff; Wilbur & Eleanor Schmitt; Sarah Burr; Ren Bradley; Jim Costello

42. We can become what we dream if fat, furry worms can fly.