Archive for the ‘Patient Outlook’ Category

Almudena’s Story:  A Life of Hope, Rejuvenation and Strength

Author: Gail S. Thornton, M.A.

Co-Editor: The VOICES of Patients, HealthCare Providers, Caregivers and Families: Personal Experience with Critical Care and Invasive Medical Procedures

Patient had ovarian clear cell adenocarcinomas (OCCAs) and underwent a complete hysterectomy at age 52. Interview was conducted 15 months’ post-surgery. Earlier in life, patient had thyroid cancer and removal of her thyroid gland and all the lymph nodes in her neck.


Almudena Seeder-Alonso, originally from Madrid, Spain, and now living in Amsterdam, The Netherlands, with her Dutch husband, René, is the eternal optimist, embracing life, reinventing herself, and looking for opportunity in every moment. She is an influential blogger of international relations issues, a career professional in human resources management in both corporate and consulting businesses in Legal, Accounting and Technology, and a lawyer and political scientist with an advanced degree in international relations who is also pursuing a Ph.D. in international relations and diplomacy. And she speaks four languages fluently – Spanish, Dutch, Portuguese and English.

Her story is one of hope, rejuvenation and strength that defines her effervescent personality. One year ago, a routine gynecology exam changed her outlook and perspective on life. She would have never thought that her diagnosis would be ovarian carcinoma of the clear cell, the most aggressive form of cancer.


Image SOURCE: Photographs courtesy of Almudena Seeder-Alonso. Top Left: Almudena’s parents, María and Angel, and sister, Cristina, and her husband. Top Right: Almudena during chemotherapy last summer (2015). Middle: Almudena attending a wedding in Asturias (northwest Spain – May 2016), Almudena and René in Comporta, Portugal (Summer 2014) and in New York (April 2014). Below left: Almudena in New York (April 2014). Below Right: Almudena’s sisters, María and Cristina with nephew, Jaime (May 2016). 

A Small Cyst Turns Into Diagnosis of Ovarian Cancer

In early 2015, Almudena visited her gynecologist in Amsterdam for a regular, yearly appointment.

“I was feeling fine. I had no physical complaints, except for my monthly periods which were heavy. I didn’t think much about it. During my examination, my doctor told me that she found a small cyst on my right ovary and we would just observe it to make sure it was not growing.”

Almudena went back to her gynecologist at the OLVG (Onze Lieve Vrouw Gasthuis in Amsterdam twice over the next month to monitor the cyst, only to find that the cyst was growing slightly. Her gynecologist recommended blood tests, an ultrasound, and a specimen of the cyst to be removed through a laparoscopy, a procedure requiring small incisions made below the navel using specialized tools.

“The pathology report said that the cyst was an aggressive cancer, called ovarian carcinoma of the clear cell. I remember sitting in my doctor’s office once she told me the results of the test, and I got very quiet. I could not believe that this was happening to me. While I was meeting with the doctor, I called my husband to let the doctor inform him about the situation. I was listening to this conversation but from far away. He immediately left his meeting with his client (he is one of two founding partners of SeederdeBoer, a Dutch Consulting & Technology firm), to come home. I left the doctor’s office, went home and cried in my husband’s arms.”

Almudena then called her parents, María and Angel, and her two sisters, María and Cristina who live in Madrid, to tell them the news.

“My Mother was very emotional when she heard about my diagnosis. My Father, who is a quiet man by nature, asked me, ‘How could this be happening to you again?’ I did not have an answer for him.”

Almudena’s father was referring to his daughter’s diagnosis of thyroid cancer in her late 20s.

Diagnosis of Thyroid Cancer As A Young Woman

When Almudena was 27 years old, she was diagnosed with follicular thyroid cancer, a slow-growing, highly treatable type of cancer that forms in follicular cells in the thyroid gland. After a 12-hour surgery to remove the gland through a procedure called a full thyroidectomy, she also needed radiation therapy. Many years later, she is feeling fine and continues to be on thyroid medication for the rest of her life.

“I was not aware at that young age of the scope of the diagnosis, but my life really changed. I was kind of a party animal at the end of the 1980s, and I did not have any amount of energy for that anymore. I needed several months to get back into shape as the scar from the surgery was a large one on the right side of my neck. I could not use my right arm and hand properly for months, even writing was complicated. The worst news came later when I could not get pregnant given the situation that many of my eggs were gone because of radiation. At that moment, egg freezing technology was not as advanced as it is today; it was not normal to freeze eggs for a later time. That was really painful, as I could not become a mother, even after four in vitro fertilization (IVF) cycles.”

According to the National Cancer Institute’s web site, thyroid cancer is a disease in which malignant cancer cells form in the tissues of the thyroid gland. The thyroid is a gland at the base of the throat near the trachea (windpipe). It is shaped like a butterfly, with a right lobe and a left lobe. The isthmus, a thin piece of tissue, connects the two lobes. A healthy thyroid is a little larger than a quarter coin. It usually cannot be felt through the skin. The thyroid uses iodine, a mineral found in some foods and in iodized salt, to help make several hormones. Thyroid hormones control heart rate, body temperature, and how quickly food is changed into energy (metabolism) as well as, it controls the amount of calcium in the blood.

Ovarian Cancer Diagnosis Continues

Almudena then spoke with her physicians in Madrid, as that is where she grew up, to get a second opinion about her ovarian carcinoma diagnosis. The physicians knew her history well and they told her that they did not believe that the follicular thyroid cancer was directly related to the ovarian cancer.

“My local gynecologist in Amsterdam then referred me to a specialist, Dr. J. van der Velden, a gynecologist/oncologist at the Amsterdam Medisch Centrum (AMC),, one of the top university hospitals in The Netherlands for this surgery and treatment. My husband, René, and I met with Dr. van der Velden, and he told us that my cancer was a fast-spreading condition and I needed to have it removed immediately. He answered our questions, calmed my fears and said he would do everything to help me.

“I have an open attitude towards people so it was easy to create a good connection with the doctors and medical personnel, which I consider very fundamental in such a process. I talked to them about my concerns or doubts and shared my worries about the process that I was going through. I have to say that all of them were wonderful in every aspect!”

Dr. van der Velden explained to Almudena that as clear cell is an aggressive form of ovarian cancer, it would need to be treated that way. One month later, Almudena underwent a procedure called open surgery, rather than laparoscopic surgery, requiring an incision large enough for the doctor to see the cyst and surrounding tissue.

“My incision from the surgery is a constant reminder of the struggle I went through. The cyst, which was 3cm, was a solid mass on my right ovary. It had adhered itself to the ovary and had to be broken to be removed, so some cells spilled out into my reproductive organs, namely, in my uterus and fallopian tubes. During this surgery, which was a complete hysterectomy, the doctor took additional tissue samples of my reproductive organs to be analyzed by pathology. Weeks later, he found no other metastases or extra cancer cells.”

The Process of Healing Begins

One month later, Almudena’s body was still recovering from the operation. Now, she had to start chemotherapy back at the OLVG.

“The doctor, Dr. W. Terpstra, hematologist/oncologist instructed me that I would be going through six full cycles of chemotherapy, which means full doses of carboplatin & paclitaxel every 21 days. At first, I felt reasonably good, then as each week progressed, I became more and more tired, nauseous, and just feeling terrible. I was not sleeping well and even lost the sensation of my fingers and toes as chemo attacks the nerves, too. Then, I started losing my eyelashes and hair so I shaved my long, flowing hair and wore a scarf wrapped around my head.”

Almudena would report to the hospital for her weekly chemotherapy session, starting at 9am and leaving at 6pm. The medical team would put her in a room with a full-size bed so she can relax during the infusion. Her husband, two sisters and some close friends would take turns accompanying her during this time, as she had a nurturing and caring support network.

“I could not have gone through this condition without my family and friends. It tests your relationships and shows you who your friends really are.”

The chemotherapy affected Almudena’s red blood cell count halfway through the process and she felt weak and tired.

“Anemia is normal during this time, but always being tired made me concentrate and focus on things less. I would watch a movie or read a book through the chemo session, and then I would fall asleep quickly.”

After Almudena finished the complete cycle of chemotherapy infusions, she had a follow-up appointment with her doctor, which included blood work, CT scan, and other diagnostic tests.

“My doctor said the tests results were very good. Now, I see him every three months for a routine visit. That was such a wonderful report to hear.

“During this process I learned to love myself, and pampered myself and my body. I learned to improve in terms of beauty, even in the worst circumstances. I wanted to feel beautiful and attractive for myself and for my close family. After three chemo cycles, I started even to think about how my new hair style would be in the moment that I finished chemo.”

Ovarian Carcinoma Pathophysiology Facts

According to published studies, ovarian clear cell adenocarcinomas (OCCAs) account for less than 5 percent of all ovarian malignancies, and 3.7–12.1 percent of all epithelial ovarian carcinomas. By contrast, early‐stage clear cell ovarian cancer carries a relatively good prognosis. When compared with their serous counterparts, a greater proportion of OCCA tumors present as early‐stage (I–II) tumors, are often associated with a large pelvic mass, which may account for their earlier diagnosis, and rarely occur bilaterally. Very little is known about the pathobiology of OCCA. Between 5 percent and 10 percent of ovarian cancers are associated with endometriotic lesions in which there is a predominance of clear and endometrioid cell subtypes, suggesting that both tumor types may arise in endometriosis.

The National Cancer Institute’s web site offers these statistics. In most families affected with the breast and ovarian cancer syndrome or site-specific ovarian cancer, genetic linkage has been found to the BRCA1 locus on chromosome 17q21. BRCA2, also responsible for some instances of inherited ovarian and breast cancer, has been mapped by genetic linkage to chromosome 13q12. The lifetime risk for developing ovarian cancer in patients harboring germline mutations in BRCA1 is substantially increased over that of the general population.

Words Of Wisdom

“Throughout this journey, I found myself again in some way and found my strength as well. When it seemed I could not stand it anymore, either physically and mentally, I realized that I could.

“At the beginning of my diagnosis, I asked myself, ‘Why me?’, and I then changed it to, ‘Why not me?’ I discovered that I have the same opportunities as anyone who becomes ill. The important perspective to have is not whining and dwelling on my bad luck. The important thing is to heal, survive, and recover my life, which is very good!

“I learned the real value and importance of things: to differentiate and give real meaning and value to the care and support of my husband, René, who was always there for me, and my parents and sisters, who came to Amsterdam very often during the process. I also made sure that René was well-supported and accompanied by my family.  René was feeling terrible for me, but he never showed it — and I learned this fact after I was starting to be back on track.”

Almudena’s Life Today

“At a significant moment in my life during my cancer diagnosis and after a long professional life in many corporate and consulting business in several countries, I decided to re-invent myself and start a new career, this time, in the battle of the opinions. I always liked foreign affairs and diplomacy, so why not share my thoughts and write about current international issues.”

That’s when Almudena started a blog to discuss relevant international political issues with her background specialization in International Relations, International Politics, International Law and Governance.

“I consider myself politically liberal and have been influenced by J.S. Mill and A. Tocqueville’s tradition of thought, as well as their ethical conception of the defense of freedom. This is what I try to capture in my political approach and in this blog.

“Regarding my profession, I have already reinvented myself, leaving the corporate life with all that is included regarding life’s standards, and do what really makes me happy, which I´m doing right now. It seems after all, looking back with perspective, I did the right thing.

“I am grateful for my life and never take anything for granted. I am the happiest when I am doing things that please me or give me the utmost satisfaction. I now have balance in my personal and professional life, something that I’ve never had before. My husband, René, likes it too and I have his full support.”

She recently ‘liked’ this saying on LinkedIn, the professional network site, ‘I never lose. I either win or learn,’ which was attributed to Nelson Mandela, the deceased South African anti-apartheid revolutionary, politician and philanthropist.

Almudena’s life continues on a path of balance, richness and thankfulness for the person she is and the many blessings she continues to have along the way.

Editor’s note:

We would like to thank Gabriela Contreras, a global communications consultant and patient advocate, for the tremendous help and support she provided in locating and scheduling time to talk with Almudena Seeder-Alonso.

Almudena Seeder-Alonso provided her permission to publish this interview on August 10, 2016.


Other related articles on the link between Ovarian Cancer and Thyroid Cancer:

Other related articles/information:


Other related articles on Ovarian Cancer and Thyroid Cancer were published in this Open Access Online Scientific Journal include the following: 

Ovarian Cancer (N = 285)


A Curated History of the Science Behind the Ovarian Cancer β-Blocker Trial

Model mimicking clinical profile of patients with ovarian cancer @ Yale School of Medicine


Preclinical study identifies ‘master’ proto-oncogene that regulates stress-induced ovarian cancer metastasis | MD Anderson Cancer Center

Good and Bad News Reported for Ovarian Cancer Therapy

Efficacy of Ovariectomy in Presence of BRCA1 vs BRCA2 and the Risk for Ovarian Cancer


Thyroid Cancer (N = 124)
Experience with Thyroid Cancer



Thyroid Cancer: The Evolution of Treatment Options


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Marcela’s Story:  A Liver Transplant Gives the Gift of Life

Patient is HCV Positive, liver transplanted from a 22-year-old donor performed at age 70. Interview conducted 14 years post-liver transplant.

Author: Gail S. Thornton, M.A.

Co-Editor: The VOICES of Patients, HealthCare Providers, Caregivers and Families: Personal Experience with Critical Care and Invasive Medical Procedures

For Marcela Almada Calles of Valle de Bravo, Mexico, a picturesque town on the shores of Lake Avándaro about two hours outside of Mexico City where she has lived for 30 years, life is about seizing the moment and having “an open mind and positive attitude.”  An active woman in her 80’s, Marcela’s days are full of professional and personal achievements and a long list of activities still to accomplish. However, life wasn’t always so positive as she put her life on hold for two-and-a-half years to relocate to Los Angeles, California, so that she could have a liver transplant.

“My spirit and attitude have always been what has carried me through life and difficult situations. This time was no different.”

Image SOURCE: Photographs courtesy of Marcela Almada Calles.   

Marcela’s story started 20 years ago during a time when she operated a successful event planning and catering business for high-profile government and social dignitaries, pharmaceutical companies, and luxury department stores.

“I normally worked long hours from early morning until evening, until one day, I felt exceptionally tired and it became a huge effort to concentrate. My ankles were swollen and I was out of breath all the time and my skin was yellow. I felt sleepy and would sometimes become tired during the day. This was unusual for me. I knew something was not right.”

At that point, Marcela decided to make an appointment with her local physician and friend, Dr. Sergio Ulloa, a highly regarded rheumatologist and corporate and government affairs leader in Mexico, who examined her and took several blood tests. When the blood results came back, Dr. Ulloa immediately referred her to Dr. Sergio Kershenovich, a well-regarded hepatologist, at his private clinic, who checked her for symptoms of Hepatitis C. After that Marcela decided to get another opinion and went to see Dr. Fernando Quijano, a general surgeon, who immediately wanted her to have surgery because he had found a cancerous tumor in her liver.

“My doctors’ opinions were that I needed to have a liver transplant immediately because I was in liver failure. It appeared that I had a failing liver — and a tumor there as well and my liver was not working properly.”

Relocating Life to the United States

At that point, my six children – Marcela, Luis, Diego, Rodolfo, Gabriela, Mario — who live in parts of Mexico and Singapore became involved in my health care decisions and treatment plan.

“My son, Luis, believed the best treatment for me was to see a liver specialist in the United States so that I received the best care from a leading liver transplantation hospital. He made some connections with friends and that next day, Dr. Francisco Durazo, chief of Transplant Hepatology and medical director of the Dumont UCLA Liver Transplant Center in Los Angeles, told me to come immediately to see him. I remember my children were supportive and concerned, but were afraid for me as we all knew that I had a long road ahead of me.”

At that time, she was put on a national liver transplant list by the UCLA Transplant Center.

“What I didn’t know was that more than 9,000 potential recipients are currently awaiting liver transplants.”

“Dr. Durazo was very concerned and told me that my liver was not working at all and I had to have a liver transplant as soon as possible, so he asked me to stay in Los Angeles, since I was now part of a transplant list.”

Evaluation By Transplant Team

Marcela’s case is no different than any other patient awaiting a liver transplant. According to their web site, the UCLA Transplant Center conducts evaluations over two or three days. During this time, the patients meets with a social worker, transplant hepatologist, surgeon, transplant coordinator, psychiatrist and dietitian, as well as other specialists as needed. The evaluation is customized to each patient’s medical condition. Once the evaluation is completed, each patient’s case is presented at a weekly meeting of the UCLA Liver Transplant Consultation Team. This group includes specialists from surgery, adult and pediatric hepatology, cardiology, pulmonary, nephrology, hematology, infectious disease, as well as transplant coordinators and social workers. At this time, the team determines if any other tests are required to ensure the patient’s candidacy for transplant, then the patient and the physician are notified of the recommendation made by the transplant team.

Waiting For Answers

Marcela arrived at UCLA in Los Angeles with her family on Mother’s Day — May 10, 1999 — for what she describes as “the best time in her life to be alive with the help of medicine and technology.” That meant that she needed to rent an apartment and live near the hospital in case the doctors received an anonymous donor who would give her the gift of life.

“I had to wear a beeper 24 hours a day and I was never alone. My children took turns over the next two-and-a-half years to give up their lives with their families to live with me and help me navigate the health care system and my upcoming surgery.”

Marcela filled her days at her new apartment in Los Angeles reading about her condition, meditating to quiet her mind, watching television, and talking with family, friends and neighbors.

“The doctors called me two times over the next few months, saying they had an anonymous liver donor and I needed to come now to the hospital for tests. Unfortunately, those blood tests and other diagnostic tests showed that I was not a good match, so the doctors sent me home. It was a frustrating time because I wanted to have the liver transplant surgery and move on with my life.”

Finally, after waiting eight months for a liver transplant, Marcela’s outlook on life was greatly improved when an anonymous donor gave her the gift of life – a new, healthy liver.

“The donor’s blood type was a match for me. The surgery took eight hours and it was successful. The doctors told me that my immune system might reject my new liver, so I was given a cocktail of medicines, such as anti-rejection drugs, corticosteroids, calcinurin inhibitors, mTOR inhibitors, and antibiotics and watched very closely in the hospital.”

Marcela was then permitted to leave the hospital only a week after her surgery.

“That was the happiest day of my life. My spirits were high and I had a life to live.”

Her children served as her strength.

“My children took turns flying back and forth to Los Angeles to stay with me. They had a long list of instructions from the doctor. I could take some walks and eat small meals for the next few weeks, but I couldn’t exert myself in any way. I developed a cold over the next few weeks, as my immune system was low, so I had to take special care to eat right, get enough sleep and, most of all, relax. My body, spirit and mind had much healing to do.”

For the next 1 ½ years, Los Angeles was my “second” home.

“I needed to remain there after the procedure so my doctors could monitor my progress. During that time, I felt stronger each day. The support of my family was a true blessing for me. They were my eyes and ears – and my greatest advocates. My doctor recommended that I come weekly for check-ups and go through a physical therapy program so that I could regain my liver function and physical strength. I followed all my doctor’s orders.”

Day by day, Marcela believed as if she could conquer the world.

“I decided, one day many months after the surgery, to become ‘irresponsible’ and spent time with a few good friends, Gabriela and Guadalupe, who traveled to see me. For a weekend, we went to Las Vegas to see shows and go to the casinos. I laughed, played and walked all I could. My children didn’t even know what I was up to, but I felt good and wanted to enjoy the world and my new freedom.”

Marcela was able to return home to Valle de Bravo with a fresh perspective, a long list of things to do, and many happy memories.

“Since that time, I have kept myself active and busy; I never let my mind and heart rest. I am also forever grateful to my anonymous liver donor because it is because of a 22-year-old young man who died in an unfortunate automobile accident that I am here today.”

Liver Transplant Facts

The liver is the body’s vital organ that you cannot live without. It serves many critical functions, including metabolism of drugs and toxins, removing degradation products of normal body metabolism and synthesis of many proteins and enzyme, which are necessary for blood to clot. Transplantation is the only cure for liver insufficiency or liver failure because no device or machine reliably performs all the functions of the liver.–procedures/liver-transplantation.aspx

According to a hospital transplant web site, overall, outcomes for liver transplantation are very good, but vary significantly depending on the indication for liver transplant as well as factors associated with the donor. Currently, the overall patient survival one year after liver transplant is 88 percent. Patient survival five years after liver transplant is 73 percent. These results vary significantly based on the indication for liver transplantation. The encouraging trend is that over the past 20 years short- and long-term patient survival has continued to improve. With advances in surgical technique, organ preservation, peri-operative care, and immunosuppression, survival will hopefully continue to improve in the future.–procedures/liver-transplantation.aspx

Life For Marcela Today

Science is helping rebalance medicine with the most innovative discoveries and new ways of treating illness.

“I am happy to be part of the solution with a happy ending, too.”

Today, Marcela leads a rich and full life.

“It’s been 14 years since my liver transplant. I continue to feel healthy and alive. Nothing will keep me from doing what I want to do.”

Marcela has an active social life. She takes frequent vacations around the world, including a three-month holiday to Asia, where she travels multiple times to Bali, Cambodia, China and Singapore, where her daughter lives. She is an avid golfer and organizes tournaments in many private golf courses. She is learning to speak French, which is an easy transition (she says) from speaking Spanish. She plays cards with a group of friends weekly, sings in a musical group, and takes dance lessons, too. Life is very, very good.

Editor’s note: We would like to thank Gabriela Contreras, a global communications consultant and patient advocate, for the tremendous help and support that she provided in locating and scheduling time to talk with Marcela Almada Calles.

Marcela Almada Calles provided her permission to publish this interview on July 21, 2016.



Other related articles:

Retrieved from

Retrieved from–procedures/liver-transplantation.aspx

Retrieved from–procedures/liver-transplantation.aspx

Other related articles were published in this Open Access Online Scientific Journal include the following: 


AGENDA for Adoptive T Cell Therapy Delivering CAR, TCR, and TIL from Research to Reality, CHI’S 4TH ANNUAL IMMUNO-ONCOLOGY SUMMIT – SEPTEMBER 1-2, 2016 | Marriott Long Wharf Hotel – Boston, MA

Technologies For Targeting And Delivering Chemotherapeutics Directly To The Tumour Site


3-D Printed Liver

Newly discovered cells regenerate liver tissue without forming tumors

Novel Approaches to Cancer Therapy


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President Carter’s Status

Author: Larry H. Bernstein, MD, FCAP



Most Experts Not Surprised by Carter’s Status 

But early response does not mean ‘cure’

by Charles Bankhead
Staff Writer, MedPage Today


Former President Jimmy Carter’s announcement that he is free of metastatic melanoma surprised many people but, not most melanoma specialists contacted by MedPage Today.

With the evolution of modern radiation therapy techniques and targeted drugs, more patients with metastatic melanoma achieve complete and partial remissions, including remission of small brain metastases like the ones identified during the evaluation and initial treatment of Carter. However, the experts — none of whom have direct knowledge of Carter’s treatment or medical records — cautioned that early remission offers no assurance that the former president is out of the woods.

“If I had a patient of my own with four small brain mets undergoing [stereotactic radiation therapy], I would tell them that I fully expected the radiation to take care of those four lesions,” said Vernon K. Sondak, MD, of Moffitt Cancer Center in Tampa. “The fact that President Carter reports that it has done just that is not a surprise to me at all.

“I would also tell my patient that the focused radiation only treats the known cancer in the brain, and that if other small areas of cancer are present, they will likely eventually grow large enough to need radiation or other treatment as well, and that periodic brain scans will be required to monitor for this possibility.”

Carter also is being treated with the immune checkpoint inhibitor pembrolizumab (Keytruda), which is known to stimulate immune cells that then migrate to tumor sites to eradicate the lesions, noted Anna Pavlick, DO, of NYU Langone Medical Center in New York City.

“Melanoma is no longer a death sentence, and we are really changing what happens to patients,” said Pavlick. “It really is amazing.”

Carter’s melanoma story began to emerge in early August when he had surgery to remove what was described as “a small mass” from his liver. Following the surgery, Carter announced that his doctors had discovered four small melanoma lesions in his brain, confirming a suspicion the specialists had shared with him at the time of the surgery.

Carter subsequently underwent focused radiation therapy to eradicate the brain lesions and initiated a 12-week course of treatment with pembrolizumab. The radiation therapy-targeted therapy combination was a logical option for Carter, given observations that the PD-L1 inhibitor has synergy with radiation, noted Stergios Moschos, MD, of the University of North Carolina Lineberger Comprehensive Cancer Center at Chapel Hill.

“I have seen this in other patients with metastatic melanoma,” said Gary K. Schwartz, MD, of Columbia University Medical Center in New York City. “It is remarkable but absolutely possible within the realm of immunotherapy today.”

Although Carter’s announcement is undeniably good news, the optimism should be tempered by a long-term perspective, suggested Nagla Abdel Karim, MD, PhD, of the University of Cincinnati Medical Center.

“We do have similar stories; however, we would be careful to call it a ‘complete remission’ and ‘disease control’ and not a ‘cure,’ so far,” said Karim. “We would resume therapy and follow-up any autoimmune side effects. Most important is the quality of life, which he seems to enjoy, and we are very happy with that.”

Darrell S. Rigel, MD, also of NYU Langone Medical Center, represented the lone dissenter among specialists who responded to MedPage Today‘s request for comments.

“I’m happy for him, but it’s very unusual, especially in older men, who usually have a worse prognosis,” said Rigel. “He is on a new drug that may have a little more promise, but there is no definitive cure at this point.”



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Life, connections and striving

Larry H. Bernstein, MD, FCAP, Curator




I have been writing about life, illness, and end of life experiences.  I am recalling the untimely death of my mother in her 50s of Linitus Plastica.  Then I recalled my cousin, Robert E. Liss, who was a reporter for the Miami Herald who came down with Hairy Cell leukemia and sought a cure. He wrote a book about the experience that would be a read for medical students.  He died of his illness in 1980, leaving a wife and three children.  I had not seen him since our youth, but I see his sister, Barbara, and my only living aunt, Bernice, who is 95.  I accidentally came across a cousin he had on the Liss side who loves photography a few years ago, as I also have done photography and darkroom work some years ago, which complicated my recent move to be near a daughter, her husband and grandson.  I am reminded of what I missed in seeing my terrific children growing up.  I have been totally absorbed in Medicine for so many years that retiring was difficult.  My surgical colleague, now deceased, once told me that all of his colleagues died in their boots.  That may be a passing generation.

I admit that I am somewhat off the topic. I’ll return to a brief picture of Bobby Liss, author of a “Fading Rainbow”.  He and his were of a more activist generation, despite the fact that they were within a decade of my birth, my mother coming to US in 1941 at 18 years age with her 11 year old sister.  They settled in Cleveland where that side of my family lived.  Bobby and Barbara’s mother married an airforce pilot who had served in the Asian campaign, and they settled in Chautauqua, New York, where my family visited when we were children. I remember my father hitting a deer in the travel in upstate New York.


Fading Rainbow: A Reporter’s Last Story
by Robert E. Liss

Renee‘s review

Oct 03, 10

Unfortunately, Bob Liss died before completing this book and it shows. He’s an amazing writer and it’s obvious this book would have been a masterpiece had he been able to complete it himself. His wife, Bonnie, did a good job finishing it, but I’ve never yet read a book that was started by one author and completed by another that was a great book. But it’s still worth reading. Facing one’s own death is never easy, but Bob (my cousin, by the way) has an amazing outlook and I feel like I really learned a lot. Plus, it’s an easy, quick, engrossing read.,204,203,200_.jpg

Fading rainbow: A reporter’s last story Hardcover – 1980

by Robert E Liss  (Author)

Published by Methuen

ISBN 10: 0416006310 ISBN 13: 9780416006315

Leukemia – Biography. | Journalists



For architect Bonnie Holmberg, writing began with tragedy. Diagnosed with an incurable form of leukemia, Holmberg’s first husband, Miami Herald reporter Robert Liss, had written most of Fading Rainbow, a book about his experience with a terminal illness. When he died before the book was finished, Holmberg completed his last few chapters in 1983, and the writing bug bit.

As the head of corporate design for now-defunct Eastern Airlines, she wrote her next book, Cruising at 30,000 Feet, aboard planes, writing about her life as a new widow and mother of three school-age boys (two of whom are now writers).

These days, Holmberg, 60, is remarried, retired, and a guide-in-training at Monticello, working under first-place winner David Ronka. Neither knew the other had entered.

Her winning entry, “Felonious Monk,” she says, was inspired by a friend who had put her home in her son’s name.

“I thought, ‘Oh gosh, what could go wrong there?'” she says. Fortunately for that friend, nothing terrible happened, but the thought stayed with Holmberg– and a recent Charlottesville bank robbery offered further inspiration.

The judges were drawn to her “felonious but strangely empathetic central character,” suggesting that the story’s only flaw was “a sense that the ending may best serve as the end of a beginning!”

They must have ESP (or else Jefferson really was whispering secrets from beyond). It turns out that “Monk” is her first short story, and it’s actually a part of her third novel. The first two, she laughs, “no one seems to want.”

She keeps her spirits up in a writing support group– an idea she suggests to anyone who wants to get into writing.

“It’s really given me a lot of encouragement,” she says, “kind of like AA.”

Bonnie Holmberg

Anyone who’s ever started a sentence with “I’m too old to…” should take a few pointers from first-place winner David Ronka.

“I was 49 or 50 when I went back for the MFA,” says Ronka, a long-time government worker who earned his graduate degree from University of Massachusetts-Amherst where he studied fiction under famed novelist John Edgar Wideman.

These days, Ronka, 61, is a historic interpreter at Monticello, but writing remains a passion.

“It’s something I can be doing when I’m 90,” he says.

His winning story, “What Can’t be Cured,” explores death through the eyes of a man whose marriage has also expired– but just might be resurrected.

Judges offered glowing praise.

“By putting an interesting twist on some recognizable male emotions, the author delivers present conflict and resolution in a light, but sincere vision of a man willing to admit his mistakes and try again,” they wrote. Ronka’s compliance with the contest rules, they said, earned him high marks as well.

So just how does one come up with the idea for a winning story?

“By observing, listening, asking myself constantly, ‘What if?'” says Ronka, whose inspiration for this story– originally a 61-page novella– came when a good friend passed away.

So what’s his favorite part of the story?

“The opening line is a pretty good hook, if I do say so myself,” he laughs. Getting readers interested immediately is “pretty essential,” he explains, “so I’m pleased with that.”

David Ronka


Oh, no birds that flockin’ round my feet
No pockets full of grain, of crumbs
The wiener cake, the soft ice

So I left my fading life
I left my hands with an open door
Left it like an open sore
I couldn’t stop the wind from flowin’

So I left my fading life
I left my hands with an open door
Left it like an open sore
I couldn’t stop the blood from flowin’

So I left my fading life
I left my hands with an open door
I left like a fading rainbow

So I left my fading life
I left my hands with an open door
I left like a fading rainbow

Oh, I left my fading life
I left my hands with an open door
I left like a fading rainbow



Jacobson, Richard
Fear and loathing on tenure trail

I do not know if she took my advice. Although I

offered to act for her, she left my office in the company

of her husband, who was still angrily demanding that

any letter contain the declaration that she had really

earned tenure. She never returned my calls.


The effect of an adverse decision is shattering. I

have noticed that rejected professors typically become

rather careless following the decision: they cross

streets without looking, they speak indiscreetly. One

client, following each of three adverse decisions, would

accidentally drop a pot of hot coffee on his hand or

foot. This symbolically suicidal behavior must be a

comment on the awful event: either it is an internaliza-

tion of the rejection-if you reject me, I reject

myself-or else it is a kind of dramatic reproach, as if to

say, if this is what you think of me, look at how great a

result you caused.


My advice to those I assist is nearly always that the

most important thing they can do is exactly what they

did before. They should go on with their work of

teaching and writing, if possible more energetically

than ever. This serves several purposes: it not only

diverts the mind from the powerful sense of grievance,

but it also confirms the identity of the client as teacher

and scholar. They have been put through a symbolic

execution, and it is up to them to carry out a symbolic

resurrection of their professional and personal vitality.


While I have always given this advice-and taken it

in my own case-I have only recently been able to ar-

ticulate the reasons for it. While I was writing the first

draft of this essay, I read a book written by a college

friend with whom I had lost touch, and which was

published posthumously (Fading Rainbow, Methuen

1980). Robert Liss was a very good writer who had

never quite achieved what he hoped. At the time he

learned he had a rare form of leukemia, he was a

reporter for the Miami Herald. He found a way of

transcending his pain and fear when he remembered

what he was, first and foremost: a writer and a jour-

nalist. So he spent the time remaining to him in-

vestigating his disease and writing about it in an in-

spiring and utterly truthful book.


If the basis of dispute is ultimately the fear of an-

nihilation, of a loss of the self, Liss teaches us that the

way to transcend the fear is through regaining your

Self. The effort may not change the external reality,

but it can alter the more important one. Courage is also

a denial of death.


Why do I bother with this’ business of helping

grievants? In most cases they do not pay me, and it

carries certain disutilities in my personal and

professional relations. The Authorities do not thank

me for it-although arguably my activity helps

legitimize their own. Being at odds with one’s world is

an extremely uncomfortable feeling: one grows

suspicious of other people, and one feels oddly guilty

about challenging Authority.


In one sense I think this kind of work is my own ef-

fort to achieve transcendence. I take pride in doing it

well, and most of those I have assisted have won sub-

stantial concessions, despite the conventional wisdom

that you can’t win these cases.


When the client soberly determines to undertake the

struggle to reverse the adverse decision, knowing the

immense stamina required, we both must face the in-

tensity of self-justifying response.



Family Hospice Care:
Pre-planning and Care Guide 

Copyright © 1986, 1989, 1993, 1999, 2002, 2006 Harry van Bommel

In the twenty years since this book was first published, hundreds of thousands of patients, family members, professional and volunteer care providers have learned the basic fundamentals of providing physical, emotional, spiritual and information supports.
People need to relatively pain free and alert for as long as they can. The hospice philosophy of care is about living life to its fullest before you die. That is not what typically happens for people near the end of their lives. Their physical pain is often not controlled well. That is inexcusable. No one need suffer unbearable pain. No one.
Many people hope that their last weeks and months will be filled with compassionate medical support, well-informed and caring family and friends, and information on how to live life fully. That is what excellent hospice care is all about. That is what Family Hospice Care is all about.
Harry van Bommel helped his mother, father and grandfather to live at home until they died. He has helped countless others through his writing, speaking, teaching and one-to-one support turn an end-of-life experience into something to be treasured rather than feared. His detailed suggestions help people take some control of the roller coaster ride of emotions, feelings and experiences.
The journey at the end-of-life will have moments of frustration, anger, tears, despair and overwhelming fear. That is too often the only experiences people have. Family Hospice Care is a tool that helps you minimize these negative experiences while providing specific ideas so that you can also experience profound moments of love, laughter, joy, retelling of stories, bonding with family and friends and care providers. Like birth, death can be an incredible opportunity to review your own life and its direction and find out the wisdom of all ages: it is our relationships with others that matter most at these times. Living fully until you die provides an opportunity to nurture those relationships to an even greater degree.

Study Finds Shu Gan Liang Xue Herbal Formula Has Breast Cancer Anti Tumor Effect

Posted in Uncategorized on June 25, 2014 |




interesting finding. Of course, you won’t find a large scale study for a medicinal that is regulated as a FOOD. Whatever the cost, if the side effect were insignificant, it would be a challenge to pharma, but the cost is not picked up by insurance.

Fading Rainbow
A Reporter’s Last Story
by Robert E. Liss
Methuen, Inc. 1980
Leukemia – biography
ISBN: 0-416-00631-0


Reporter for Miami Herald, merit scholar graduate from Brandeis U., father of 3, develops Hairy Cell Leukemia, going out like a “failing rainbow”, tells the story of tests, hospitalizations, treatments, pain.  Story completed by his wife – Bonnie Liss.


Renee Liss

But what really stuck with me, what really is making a difference in my life, the thing I need to remind myself of every single say is this: One of the characters goes to see a published author speak about his latest novel. They end up having a brief affair and she suggests one of his books for the group and he attends to meeting. In the course of speaking about his process, he tells the group that he used to putter around the house all day waiting for inspiration and it never came. So now he sits down at his desk at nine every morning and just starts. And the words come and he writes twenty pages a day.

So I’m trying something similar to that. Since I have a full-time job that is not writing a novel, I can’t sit down at nine every morning and just write all day. But I have decided to dedicate a minimum of one hour per day to it. I’ve done that for three days now and plan to continue today.


My friend Amy over at Mrs. Thor is in a similar situation — trying to get inspired and trying to make significant changes in her personal and creative life. So we’ve started our own private little writing group, though I don’t know that’s the appropriate term. We’re going to speak on the phone once a week and set goals for ourselves (like my writing an hour a day) and then check in by e-mail each day on whether we met the goals. It’s no pressure, but it’s still being accountable to someone else and hopefully inspired by the other person’s progress.

So far, I’ve added 3,100 words to my novel and rewritten a short story from a few months ago. It feels good.

Posted in My Thoughts on WritingTelevision


long before the idea of a corporation or land ownership or anything else modern, people traded and bartered for goods and services. We use money in our modern society, but humans for most of our very long history, have in one way or another purchased items for life from each other. It may have been that I have a cow and you have an orange tree so I traded milk for oranges.

But beyond this, let’s think about whether we truly want to model human society based on what other species do or do not do: ……

  • No more central heat, air conditioning or indoor plumbing.
  • Give up your cars, bicycles and all other forms of transportation other than swimming or walking.
  • Build your own house with no power tools.
  • Build that house without tools made with any form of power tools.
  • Quit your job to do nothing but hunt and garden and fight for resources.
  • No more flower gardens.
  • No one will be allowed to keep pets. In fact, you can’t have that cow I mentioned above because what other species keeps cows? Or dogs? Cats? Horses? You’re on your own. PETA will be happy.
  • No music.
  • No dancing.


Sun isn’t considered Hemingway’s greatest work and it was a strange book in that there really was no plot. Or maybe a very weak plot that the reader has to kind of search out. It was just a story about a series of events that happened to this group of people. But I still enjoyed it on a certain level. Almost like a course in creative writing without having to sit in a classroom.

I’m discovering how very much I have in common with this man. It’s all very strange. I’ve always said that my time as a journalist was the best thing that ever happened to my creative writing style. The quick, active, short way one must write newspaper articles — getting to the point quickly and using limited space to convey a vast amount of information — translates excellently into short story and novel-writing. One learns to not waste words or over-describe. Turns out, Hemingway learned the exact same lesson in the exact same way I did. He began his writing career in journalism and he learned to write fiction by emulating the journalistic style.

I hate to compare myself to him because he’s considered so widely to be one of the best writers in history and especially of the twentieth century and I haven’t even published a short story. Maybe I’m arrogant in my comparison, but I see so much of my style in his. I see the writer I maybe am not yet but want to be some day.






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An ambiguous course of psychosis

Larry H. Bernstein, MD, FCAP, Curator



It is not always clear what the diagnosis is when a young person develops a psychosis, which is usually a clear break, but the features are not typical.  In the New York Times Opinion Page of Nov 17, 2015, Norman Ornstein describes the development of such in his son – How to help save the mentally ill from themselves.  He describes legislation in process to deal with the problem of when you institutionalize a potentially suicidal patient.  This was the situation that I described in the murder of Rabbi Adler on the podium by Richard Wishnetsky so many years ago.  In the case of Ornstein, his oldest son Mathhew died at 34 of carbon monoxide poisoning 10 years after his problem was discovered.

The son was a brilliant student, and he excelled in debating.  He was compassionate and empathetic.  This young man was a standup comedian and after graduating from Princeton wh went to Hollywood. The father describes his son’s condition as anosognosia, meaning lack of recognition of his illness.  I recall that a prominent cancer surgeon who was manic depressive psychotic and required lithium might have behaved that way when he failed to take his medication. He had a tragic surgical failure that ended his career when he was doing a rectal dissection and got into the posterior vascular bed and was in trouble, needing the assistance of the Chief of Urology.  The patient who died received over 100 units of blood. This very intelligent surgeon would throw the specimen he removed to the pathologist who entered the operating room in poor judgement.  I also recall a valued colleague of mine, a mathematical genius with MD and PhD tell me how the great surgeon and father of kidney transplantation could work tirelessly, but he died in a plane crash – himself as the pilot. I’m not in a position to disagree with Norman Ornstein’s conclusion that the son had a serious mood disorder, but the presentation he describes is similar to the two cases I mention.  In addition, I did not mention that my dear colleague was himself manic depressive, and he would work tirelessly, except when he was down and out.  He wrote an incredible program to diagnose heart attach from the serum enzymes for the IBM PC-XT in apl.  He sailed through difficult mathematics classes without taking notes.  He bacame interested in Shannon Information Theory when he heard a lecture by a microbiologist colleague who had done seminal work in classifying organisms by their biochemical features, which led to extending the use of feature extraction and combinatorial classes.

Ornstein points out that his son was over age 18, so that neither the family or professionals had any legal authority to make a decision about his hospitalization or related matters.  This is not quite like what I had seen with my brother.  But in my brother’s case, he was completely fractured, but he also was in no way belligerent.  In the case of Mathew Ornstein, he was never belligerent, but he was unkempt, kept himself poorly, and grew a beard.  He also becaame ultra religious.  The religiosity was also a feature of my own brother’s illness.  Matthew took a position that he could not take medication.  What is not clear is what medication he would have been on, which might be informative.

see more at –




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A Cousin’s Experience with a Pituitary Acromegaly

Author: Larry H. Bernstein, MD, FCAP


I have been given the need to think about resilience in the face of serious conditions, such that they require special surgery.  How do we account for the resilience?  I can’t quite get my hands around this question.  My grandfather lived a long life and retired at age 70 years as a mechanic so that a younger person could take the job.  He looked after my loving grandmother with dementia with great care.  He woke up early every morning and walked a good several miles before embarking on his day.  He loved to have his grandchildren visit at least every Friday.  He also loved to come to Detroit from Cleveland and fix anything in our house that could use fixing.

His younger son was a brilliant scholar, always reading, and a top student in his school in Hungary, so that he tutored the school principal’s children.  He was unable to finish his medical school studies because of the incursion of WW II.  He came to Cleveland and had a good career in selling insurance, and he could manage difficult calculations in his head.  He could recite the prologue to the Iliad throughout his life.  He lived to 99 years.  He liked to dance and enjoy himself.

My Uncle Herman had an only daughter.  I nickname her Lulu.  She and her husband have lived in Georgia for many years.  My sister was visiting her and told her that she was not like her younger pictures and was masculinizing in her features.  She had a serious anterior pituitary tumor called acromegaly that secretes growth hormone. She has used the Cleveland Clinic all her life and she was referred to a former NIH physician in Los Angeles who is recognized as a world authority.  She has had two surgical procedures in about two decades and is followed assiduously.  There have been complicated events that were related to her present condition, but she has managed it all well.  I get a call from time to time for assistance in a second opinion to review the radiology and pathology reports.  Despite her condition, she has an ability to take it all in stride.  I had made a recommendation many years ago on a diet that included sufficient omega 3.  The downside was that when visited by relatives the use of a good restaurant is not as enjoyable.   However, as I still recall, going to dinner in Florida with Herman’s brother was an experience because Dave’s wife was a far better cook.

When I was handling my own thyroid condition in the last two years I heard from Lulu. She encouraged me and said that I was a Schwartz.  That was the story.  Our only living aunt is 95 and doing quite well except for her macular degeneration.  She lives in upstate New York near her daughter, my cousin Barbara and her husband Stanley.  Barbara had a motorcycle accident many years ago, and she was afflicted with an enduring pain that she managed well.  It was difficult to visit when she was younger because she was so busy raising her children and taking them to activities.

One might look at this as having good genes, or is it good Jeans.  The significant factor is a healthy world view.


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Larry H. Bernstein, MD, FCAP, Curator



Mind-body*. Core Strength. Core Stability.

You’ve heard those terms before but what are they? Well, they are much more than the latest fitness buzzwords – they are keys to a healthier lifestyle through mindful movement and Pilates.

Pilates is an innovative and safe system of mind-body exercise using a floor mat or a variety of equipment. It evolved from the principles of Joseph Pilates and can dramatically transform the way your body looks, feels and performs. Pilates builds strength without excess bulk, capable of creating a sleek, toned body with slender thighs and a flat abdomen. (Yeah, we know – who doesn’t want that?)

It is a safe, sensible exercise system that will help you look and feel your very best. It teaches body awareness, good posture and easy, graceful movement. Pilates also improves flexibility, agility and economy of motion. It can even help alleviate back pain.

No matter what your age or condition, it will work for you, but don’t just take our word for it. According to the SGMA, in the U.S. alone nearly nine million people participated in Pilates in 2009 – a staggering 456% increase from 2000.


A group experience

Does working out with others help you stay motivated and focused? Do you need the camaraderie (and discipline) of scheduled classes to keep you on track? If so, group reformer or mat classes at a localstudio or club may be the best fit. Many clubs offer free mat classes to introduce their members to Pilates. Most group Reformer classes typically carry a fee.

To find a studio, club, rehab clinic or wellness center near you that offers Pilates, visit our Pilates Studio Finder.


Pilates and physical therapy

In addition, Pilates is now offered at many rehabilitation clinics and wellness centers. If you’ve been injured or are seeking physical therapy for chronic neck and back pain, hip/knee replacements, multiple sclerosis, fibromyalgia, scoliosis or other conditions, research is showing that Pilates can be an effective treatment. Discuss any treatment program with your healthcare team.

For more on Pilates for rehabilitation and sports medicine applications, our Library may be helpful.


Good Pilates technique includes intricacies of both movement and breathing that are best explained and demonstrated by a qualified instructor.


For all of us in this community, it’s about movement and how it can change people’s lives. And that’s what we are – a community. We’re all partners in this and when you do well, we do well, so we want you know you have our unwavering support.

We’re a diverse bunch – different nationalities, different styles, perhaps even different philosophies. But the big picture remains the same. We are all trying to make this world a healthier place. Whether it’s our own health, a friend’s, or a client’s, we’ve made a conscious decision: we believe in Pilates and mindful movement and the life-altering benefits they can bestow.

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