Why the Foundation?

LogoBoxesRegisteredThe Meso Foundation realizes that there are numerous groups that you can affiliate with, provide your stories and attempt to raise awareness but it seems as if many are just going about this in the wrong way. To begin with, have you really looked into the Facebook pages or websites that you are supporting? Are they transparent in who they truly represent? Most often this is not the case.

The Foundation is your only 501(c)3 not-for-profit that is dedicated solely to finding a cure for mesothelioma. Our executive director and nurse practitioner, Mary Hesdorffer, is uniquely qualified to assist you in managing your disease and understanding all of the options that are available, be it a clinical trial or a more standard form of treatment. Mary spent years actively treating mesothelioma patients and writing clinical trials and papers that have been published in peer-reviewed journals. She understands the disease and brings a unique perspective to the Foundation both as a medical professional and patient advocate.

Patient advocate is a term that is widely used in mesothelioma, but who are these advocates? Who do they work for and what motivates them to advise you? Many nurses have been hired by legal entities but do you know that they have never worked in a mesothelioma clinic, and are trained in this disease by the law firm that surreptitiously pays their salary?

Hmmm… seems that we have some serious conflicts in this disease and it is about time that everyone takes a step back and thinks about what is truly best for the patient and the disease in general.

As the Meso Foundation is not a business model, we are not beholden to any institution or legal entity. We are independent and trustworthy which sets us apart from many of the “faces” you encounter on the web. Facebook is new to many of you and we ask that you think before you click the “Like” button, stop before you fill out an on-line form. Think. Where is your information going? Whose cause are you supporting?

You have more power than you realize and the capacity to effect change. We invite you to become more closely involved with the Meso Foundation, support our mission and assist us in getting unbiased information directly into the hands of those who are affected by this disease. We have a peer-reviewed research program where we provide grants which we hope one day will not only lead to more effective treatments but to a cure. We have testified before Congress multiple times. Through our direct advocacy efforts we have secured much needed federal funding for mesothelioma research. You can view this expert testimony here.

We invite you to visit our website www.curemeso.org, call us at 877-363-6376. If you’re on Facebook, please “Like” our Facebook page so you can receive the latest news about research, support, and advocacy. We are the real deal- we are your nonprofit and we need your support!

Follow-Up to NY Times’ article on Palliative Care

In the Sunday Times dated April 11th there were some very thought provoking responses to the article we posted last week regarding palliative care.  I think this is an area of great interest to our patient population and I would like to continue the discussion.  I read with great interest the responses from palliative care experts and I am convinced that so many of you would benefit from requesting that palliative care become part of your expert medical team.  Fran Heller a much respected member of NY Presbyterian Hospital/Columbia University will be leading a group as well as meeting with patients and family members who would like expert advice.  There will be many professionals from various disciplines on hand so please take advantage of their expertise.

Letters to the Editor, New York Times, April 10

If you haven’t read our previous blog, take a look here and also make sure to go through the comments sections.

Holidays and Stress

We are all in the midst of the holiday season and for those affected by mesothelioma this can be an extremely stressful time. I would like to urge those who are in need of support or just a good listener to call, I am in town for the holidays and readily available for a chat. If you would like I can facilitate an exchange of email address or phone numbers for a “buddy” to help you through the holiday. If you have lost touch with a member of the community this would be the perfect time to reach out and renew the relationship. You may find yourself running through a mix of emotions anger that your loved is no longer with you or even anger that they are not well enough to participate in the family traditions. Recognize that these emotions are normal and are part of the grieving process. If you do begin to feel that you can no longer cope reach out to a trained professional for assistance.

Expectations run high during the holidays and we have been trained to try and meet the families expectations less we disappoint someone. This year you might have to set some guidelines for yourself and make some general announcement as to how you can participate in the holiday festivities. Budgets can be particularly tight when you have an ill family member and it might be easier on the wallet and take considerably less time if limit gifts to the small children and if you’d like do a grab bag where you pick a name of one family member to buy for so everyone will have a gift under the tree. If dinner is too difficult you might consider a holiday brunch. If it is too much of a burden on any family member to host it you can consider meeting at a local breakfast place. If your loved one is too sick to attend, you might ask someone to give you some respite care for a few hours thus allowing you the time to be nourished by your loved ones.

For those that have lost loved ones some have told me that establishing new traditions made the day pass easier. Some volunteered at shelters and served dinner, others went to hospitals, nursing homes and some traveled to a far away place finding distance made it easier to fend off the holiday blues. If you have just lost your loved one and are physically and emotionally exhausted and have the means to do so, consider a spa where you can be pampered and begin to heal physically as stress takes a physical toll on all of us. If this is not within your budget, stay home and treat yourself to something special. You must give yourself permission to enjoy life and to heal and the holiday time can be the start of a new year and a new you. We also need to recognize that everyone in the family has been affected by this loss and are in different stages of grieving. A quiet call to discuss how best to handle the holidays can help to avoid misunderstanding or hurt feelings. Being alone is okay, just take some time to decide how much time is healthy for you to be alone. If you are able set a holiday table, prepare a simple meal, light some candles and cherish your memories they will always be with you.

~Mary Hesdorffer, NP

Click here to contact Mary Hesdorffer, Nurse Practitioner or call 877.363.6376

Hospice Care

Choosing hospice care does not mean that one is giving up on life but rather choosing to  end treatments aimed at attempting to cure the disease or condition and elects treatment that eases pain and discomfort Hospice services are available once a patient is thought to be in the final 6 months of life. Hospice nurses receive special training in both pain management and grief counseling.

The Medicare benefit for hospice care does not cover expenses for room and board at nursing homes or long-term care and assisted living facilities. Medicaid and some personal insurance plans, however, cover these room and board expenses.  You should discuss this with your private insurance companies to find out what your benefit options are.  There is no stigma attached to having your loved one admitted to a facility. Many of you require complex care, have caregivers with multiple health problems or feel ill equipped to render the necessary care.  Many skilled nursing facilities have hospice services so if you have extended care insurance you will be able to obtain inpatient hospice as well.   Find out which facilities are  covered and visit them to see if they meet your expectations.  If you are currently receiving visiting nurse services  some have contracts to render hospice care as well.  This can be so comforting as you will already have established a relationship with many of the nursing staff.

The decision to accept hospice care should be made by the patient.  There should be a frank discussion with the oncologist about his/her present condition and if any further treatment would be thought to be beneficial.  Sometimes chemotherapy is not given for a ‘curative” effect but to relieve symptoms such as shortness of breath or pain control.  Radiation therapy is also given for the same reasons.  Some insurance companies will permit short term therapy aimed at relieving symptoms while on hospice but this usually entails a process of denials and appeals.  The most difficult time for the caregiver and family is to accept the patients’ decision to enter hospice.  So many view this as giving up and feel that if they all rally behind the patient they can encourage them to change their minds.  This can cause quite a bit of tension among family members and results in the patient retreating and not being able to express their wishes.  If the oncologist thinks that hospice is appropriate and if the patient is in agreement then the decision should be supported.  If on the other hand the oncologist is not a mesothelioma specialist and you have doubt about whether all options were explored, then seeking a second opinion might be valuable.  If the patient is exhibiting signs of depression and you feel that in their normative state they would make a different decision than they should be treated for depression.  Remember, there is no harm in choosing hospice nor is it a decision that cannot be reversed.  Patients often times leave hospice care if they feel stronger and some begin treatment at a later point in time.  There is definitely the exception to the rule but the possibility always exists.

If you have not chosen hospice and your loved one dies outside of these services it does not mean that you cannot access their bereavement services.  Most hospice facilities offer support groups and grief counseling and this can be so helpful to those of you who have lost a loved one.  While I am not going to address grief and dying in today’s blog I am going to encourage all of you who might read this to call a friend or family member who has lost a loved one.  It is all too common that we are all there to offer our support in the immediate mourning period but forget that grieving takes place over a prolonged period of time and anniversaries and holidays are especially difficult.

~Mary Hesdorffer, NP

Click here to contact Mary Hesdorffer, Nurse Practitioner or call 877.363.6376