Holiday Suggestions for the Bereaved

by Mary Hesdorffer, Nurse Practitioner
Executive Director, Mesothelioma Applied Research Foundation

Learn more about supporting those affected by mesothelioma.Having suffered a profound loss can make the holidays appear to be the most dreaded time of year. How do you cope when others around you are caught up in the giddiness of the holidays and you find yourselves perhaps a little resentful of their good cheer? I think a basic principle is that to give is to receive. Perhaps you can volunteer for an organization that has an event during the holidays. This provides you with a ready excuse to reject invitations to events that you are not ready to attend this year and an opportunity to focus on the suffering of others rather than yourself. It is not uncommon to meet others who volunteer during the holidays who also have suffered a loss. It may prove to be fertile ground to establish new friendships in addition to igniting a passion to help others less fortunate than you.

If you do wish to participate in some of the holiday gatherings, establish that you intend to “drop by.” This will provide you with the comfort of knowing that you can leave at any time if it doesn’t feel right or if you begin to feel overwhelmed without having to offer excuses. Mix it up a bit – perhaps stop by a few events, which will keep you moving and interacting on a less focused conversation. The first is always the roughest. Perhaps you have a friend who also suffered a loss who would be willing to be your “partner” at these gatherings. You can cover both families and friends, and brining an unfamiliar guest with you will distract the conversation from your loss to a more superficial meet and greet, which is perhaps all you can handle this holiday.

Maybe the best plan of all is an escape. A friend or family member might be a willing partner to travel with to explore an unfamiliar region of the country or perhaps new customs and celebrations in a foreign country. You can be selfish this holiday, and most will understand and give you the space and time needed to heal from your loss.

I just finished reading “The Year of Magical Thinking” by Joan Didion, and I found it very helpful in understanding the first year. Though many in the community have shared their loss and grief with me, this book presented a very clear insight into the loss and the effect on those left behind. You may read it, or perhaps gift it to someone who wonders what is “wrong with you.” Grief is real; it can be measured by many physical manifestations. The healing process varies from individual to individual with no time frame or expectation to return to the person you once were. It is a time of sadness, personal growth, and emergence and reflection on what was lost, but also a hope that the future is still yours to enjoy.

Those affected by mesothelioma can benefit from support year round. Learn more about how you can get involved.

The Holiday Table

by Mary Hesdorffer, Nurse Practitioner
Executive Director, Mesothelioma Applied Research Foundation

Holiday table place settingThe holidays are approaching, and the dreaded holiday feasts begin. The mesothelioma patient who is undergoing chemo, or perhaps has not regained their appetite, can be very uncomfortable sitting at a table laden with holiday goodies and an expectation that they will dive in with relish.

So what tips can we provide for those of you preparing the meal? If you are fortunate enough to have a full set of china, pull out those 7-8 inch luncheon plates and set the table. If not, thrift shops have a ton of mismatched sets that you can put together to create a unique holiday-scape. Placing a scant amount of food on a smaller dish gives the appearance of a well laden plate, thus making the patient‘s lack of appetite less apparent to others at the table. If you are pouring a holiday cocktail, move to sherry glasses. Your guests can refill, and the patient again can enjoy some holiday indulgence (check in with the medical staff or pharmacist for possible medication interactions with alcohol). Most cancer patients can enjoy a glass of wine, which can help in terms of relaxation and appetite stimulation.

If you have been stretched to the limit with your caregiving activities and are hosting the holidays, not only enlist your guests to prepare an entrée or appetizer, but consider catering some or part of the meal. This is a time to enjoy your family and friends, and to do so means that you have to ease some of the burden that you carry. Perhaps you are like me – someone who truly takes pleasure in the whole process of cooking, planning and executing the meals. If so, then you may require some respite care with your caregiving duties. This is a perfect time to call upon friends or family members to assist. You can consider hiring someone to help around the house in whatever capacity you need. A patient in this role can ask friends and family that they work well with to be their “kitchen assistants” and do more of the directing and tasting of the courses to be served.

Often, we get so caught up in the gifting and the appearances of the perfect holiday that we forget the true spirit of it. How simple would it be to request that, in lieu of gifts this year, you would like to plan an evening out with close friends and family?

This is your holiday to plan and enjoy – savor all the joy of the season.

Update from the ED: My time at UPenn and the Fox Chase Cancer Center

by Mary Hesdorffer, Nurse Practitioner
Executive Director, Mesothelioma Applied Research Foundation

Mary HesdorfferI received an invitation to attend the first ever community lung cancer day at Fox Chase Cancer Center in Philadelphia, Pennsylvania. Though the focus was on lung cancer, I was given the opportunity to have a table where I could promote the work of the Foundation as well as mingle with the community. I did not meet any mesothelioma patients, but I did speak with two individuals who lost parents to mesothelioma, and they thanked me for our work.

I was also able to meet the lung team, one of whom trained with Dr. David Sugarbaker (small world indeed). The thoracic nurse navigators were very interested in our work and agreed to provide their patients with our brochures, as did the respiratory therapists. We have awarded a number of grants to the researchers at Fox Chase Cancer Center, and Dr. Joe Testa, a past recipient, was given our pioneer award last year.

This event followed a very successful one day mesothelioma conference at UPenn.  Melissa Culligan took on the main responsibility of organizing the conference and did a superb job. Don’t be fooled by the sweet and quiet disposition of Melissa, as underneath is a stern taskmaster keeping the docs on their toes. She is the heart of the UPenn program. Dr. Joe Friedberg assigned the topics for our presentations and kept the momentum going with his usual god humored quips. I was given the presentation title “the unmet needs of the mesothelioma patient.” As promised, I brought your voices to the presentation, and attendees were moved by your stories and our pleas for new drug therapies, better opportunities to participate in clinical trials, as well as more supportive care services.

Dr. Lee Krug, who will be accepting the role of BOD chair in January also presented, and I was so pleased knowing that this well-respected medical oncologist will be leading us to fulfill our mission. Dr. Raffit Hassan, former SAB chair caused quite a stir with his report on the progress he is making with his trial of SS1P. I received some exciting news from Dr. Steve Albelda, a member of our SAB; He will be taking a sabbatical in Hawaii for 3 months to collaborate with Dr. Michele Carbone. It is very nice to see these relationships building and the sharing of resources and data.

As is usual at UPenn, their energy and enthusiasm for treating mesothelioma is heartwarming, and I left knowing that they will continue to build and expand upon the terrific services that they already offer to mesothelioma patients. Dr. Friedberg trained a young surgeon from Taiwan, and he flew in to be part of the conference as did Dr. Paul Bass from the Netherlands. I was proud to be among those who presented, and I will be updating you on the science sessions at both this conference and the conference in Sydney. It is obvious to me that we are seeing the fruits of our labors with more trials having a targeted approach based upon much of the science that we have funded.

Mary Hesdorffer, NP, to Present at UPenn Conference

Mary Speaking at 2013 SymposiumMary Hesdorffer, Nurse Practitioner and the Mesothelioma Applied Research Foundation’s executive director, will be presenting at a conference at the University of Pennsylvania (UPenn) on November 15. Penn Mesothelioma and Pleural Program and Penn Presbyterian Medical Center will be hosting the conference titled “Pleural Mesothelioma 2013: Multidisciplinary Diagnosis, Treatment and Investigation.” Mary has been selected to present alongside national and international mesothelioma experts “to provide the full spectrum of perspectives on the many challenging and controversial topics surrounding this cancer.”

Mary Hesdorffer received her undergraduate degree at the College of New Rochelle in New York and went on to receive her Masters of Science at the same institution. She is a fully credentialed Nurse Practitioner and has spent 16 years actively treating patients with mesothelioma. Mary has an expertise in the development and implementation of clinical trials. She is published in peer reviewed journals and has lectured nationally on topics pertaining to mesothelioma with particular emphasis on clinical trials, as well as symptom and disease management.

At the University of Pennsylvania conference, Mary will present “The mesothelioma patient – what are the unmet needs?” This lecture will review what is currently being done for mesothelioma patients and examine what aspects can be improved and what additional measures should be taken to better fulfill patient needs. In the “Pleural Mesothelioma 2013” brochure, Mary Hesdorffer is described as “the person with likely the greatest number of contacts with mesothelioma patients in the world.”

Lee Krug, MD, a member of the Meso Foundation’s Board of Directors, will also be presenting at “Pleural Mesothelioma 2013”. Dr. Krug is an Associate Professor of Medicine at the Division of Medical Oncology at the Memorial Sloan-Kettering Cancer Center. Described as “an acknowledged world leader,” Dr. Krug will present “Mesothelioma – Is there a standard of care, is there a staging system?” This lecture “will discuss the current staging of malignant pleural mesothelioma, including the limitations of this system, and will review what is currently considered ‘standard’ treatment.”

View the full brochure for “Pleural Mesothelioma 2013: Multidisciplinary Diagnosis, Treatment and Investigation” for further conference details.

Notes from Mary Hesdorffer, Executive Director of the Mesothelioma Applied Research Foundation

mary1The past four months have rapidly flown by and I had hoped to correspond with you more often and in greater detail since assuming my new role. I am enjoying this position and I must confess it has its challenges, but each day, with the assistance of the Foundation’s talented staff, we make progress and work toward fulfilling our mission. Our mission statement is posted online and was crafted with the input of board and staff. We feel that we have clearly stated the objectives of the organization and are anxious to hear what your thoughts about the direction of the Foundation. I have scheduled a town hall meeting for next week as I have not had an opportunity to thank many of our supporters and to hear their viewpoints on the mission of the Foundation and how it is meeting their current needs.

Right now my focus is on the peer-reviewed grants program. I meet with the Board of Directors (BOD) on Thursday night for a decision on the number of grants to fund. As you may recall, the Foundation administers a robust peer-reviewed research grants program which is one of the major focuses of our Scientific Advisory Board (SAB). Please view the bios of this talented group of scientists who review the grants in great detail in a process based upon the system used by our National Institute of Health. Why such a laborious process? Simple – without a strong scientific review, and oversight following funding, your research dollars would have little value. We ensure that each dollar donated to our research program is treated with respect and good faith that it will be used as intended, with oversight and transparency. The SAB recommends the grants that are worthy of funding and the BOD has the fiscal responsibility to allocate budgeted funds for this purpose. I want to personally thank Dr. Lee Krug, Chair of our SAB for leading the process and keeping us informed of progress of the grant review. His strong leadership and scientific knowledge guided this rigorous process.

It is with great excitement that I await Thursday’s meeting and we will share this news with the community quickly and with great enthusiasm.

TOWN HALL MEETING
WHAT: Town hall meeting (conducted via conference call)
WHEN: 8:00 p.m. EST Wed. Jan. 23rd
WHO: Everyone is invited
WHY: To discuss Foundation updates and its programs and to allow for question/answer with executive director
WHERE/HOW: Conference call in number: (605) 475-4000
Participant Access Code: 216145