The ER physician informed Susan and her family that he wanted to admit her to the hospital immediately; however, Susan's HMO inexplicably would not authorize the hospitalization, and the MacDonalds reluctantly decided to seek treatment within their HMO's plan and authorized hospital. The ER doctor agreed to release Susan only if she first agreed to seek further hospitalization elsewhere immediately. At the same time they were fighting against a possibly serious illness, the MacDonalds were also marshalling their resources to persuade their own insurance company to perform their contractual and moral obligations.

On September 17, Susan presented to Downey Hospital. Laurie had called Susan’s primary physician to inform him that they were proceeding to Downey; she gave him the option of meeting them there or authorizing Susan’s admittance. He agreed to neither and asserted to Laurie that she and her family were overreacting. After more than six hours of testing and waiting at the Emergency Room of Downey Hospital, the physician there informed them that Susan’s primary care physician had refused to admit Susan and expressed his wish that she go to his office the next morning.

The next day, Susan again consulted with her physician in his office. He advised that he was still trying to schedule a CT scan. Laurie, who had been compelled to leave her employment to look after her mother and assist her in finding treatment, called the physician’s office every day, to ensure that the CT scan took place, that the results went to the right place, and that her mother received a referral to a pulmonologist.

Susan underwent the CT scan on September 19. With a good deal of self-assertive effort, Susan was seen on September 23 by a Lakewood, California, pulmonologist to whom her insurance group had referred her. The pulmonologist reviewed the CT scan and additional chest films, including the original taken in May. He determined that there was a pleural effusion covering half of Susan’s right lung and that it had grown substantially since May.

The pulmonologist scheduled and performed a bronchoscopy on September 25 at Downey Hospital. He was unable to biopsy any tissue. He also performed a thoracentesis, withdrawing approximately 200 ccs of yellowish, mucous-colored fluid. Cytological tests upon the fluid were negative for malignancy.

Not convinced by the cytological tests that Susan was healthy, the pulmonologist recommended a thoracotomy with biopsy. As he did so, he also advised the MacDonalds he would have to refer them (again, more delay) and asked that they wait another two weeks for the results of another chest film.

Frustrated to the breaking point by the constraints of their HMO, the MacDonalds chose to switch treatment groups within their HMO. They would have to begin with a fresh consultation with a new primary physician with a new group of doctors and hospitals. They would also have to wait for two weeks; however, they hoped the temporary setback would soon push them further ahead than if they did nothing. On November 1, Susan met with her new primary care physician who, understanding the gravity of her situation, referred her to a new pulmonologist.

A FRESH START

Susan met with the new pulmonologist on Nov 7. He ordered a new CT scan; on November 13, the results of the scan showed that Susan's effusion as expected was growing, and her right lung's breathing capacity was steadily diminishing. Susan’s pulmonologist advised surgery, but as Susan's HMO would not permit such a procedure for several weeks, he advised her to present to the Emergency Room of Hoag Hospital in Newport Beach that same day.

Susan was assigned an oncologist, who on November 21, visited with her in the hospital and advised her that the pathology department had pinpointed the diagnosis as malignant mesothelioma, epithelioid type. He wished to insert a porto-catheter for administration of chemotherapy immediately, but Susan declined, feeling that she needed more information. Susan was discharged from Hoag the same night, the night before Thanksgiving.

A FAMILY FIGHTS BACK

With the support of Geri and the help of Laurie, Susan began investigating treatment options available to her. Everywhere she turned, she found a lack of information and a glut of misinformation. Reluctant to endure the traditional and taxing rigors of chemotherapy with no guarantee of meaningful results, she researched the possibility of ALIMTA trials at the CTRC in San Antonio, Texas. Besides pharmaceutical methods of attacking the disease, the family researched new treatments, clinical trials and any surgical options offered to treat mesothelioma. She researched and reviewed all information about Dr. David Sugarbaker at Brigham and Women's Hospital in Boston, Massachusetts, and his extra-pleural pneumonectomy (EPP) with heated intracavitary chemotherapy wash.

At Susan's request, her oncologist referred her to Dr. Cameron. She was immediately pleased with his "patient-oriented" attitude. She felt comfortable. "I don’t want a cheerleader with all the rah-rah stuff, I just want a capable and honest doctor who will help me fight for my life." After spending an hour-and-a-half consultation with Dr. Cameron, during which she learned about the statistics surrounding her disease and the P/D procedure and her eligibility for the procedure, she felt a mild sense of relief that her treatment was finally moving ahead. Susan is scheduled for surgery in the next month; she will have time to recover, and then she will focus on her next treatment option to win the fight against this disease.

COMPASSION AND RESILIENCE

Despite steeling herself for her upcoming surgery, Susan evinces true concern for other patients out there facing the same predicament. She and Geri have been side-by-side since they were children and married 43 years with five healthy grown children and six grandchildren. They feel fortunate to have one another and their family. They have supported each other and worked to make a recalcitrant system work for them. They faced an HMO that would not grant their requests, a doctor who lost a crucial part of her file, and nurses irritated that a united family would dare to enter the doctor's office together and bother to ask so many questions, instead of letting the doctor speak. Susan thinks about the people she knows in the association she runs and others like them -- most of them elderly, some of them without families -- trying to get medical care and the answers they need. With those considerations in mind, she says with despair: "God help them, they haven’t got a chance."

She adds: "I was unfortunate enough to have been in the first medical group and very fortunate to have switched into the new group and to have had this new group of doctors respond so quickly and so effectively on my behalf. I was also fortunate enough to have a family member who can devote all her time to working on my medical issues daily and another daughter who can stay with me continuously for support and care."

At the same time, she resents the asbestos-producing companies that put profit over people, and exposed her to asbestos through her husband’s clothing, a career machinist in the Navy. She and Geri were planning to begin building a home in Maine this summer, near one of their daughters, and enjoy their retirement. With the onset of Susan's illness, they have had to put their retirement on hold. Susan is the rock of her family, a dedicated wife and mother who devoted her life and beautiful spirit to her husband and children. She is dearly loved and respected. Susan continues: "I'm only 62. We had great plans, and I was so excited about the future. I am young, and young at heart."

Susan MacDonald plans to live. She is a resilient and strong woman who intends to fight back against this disease and win. She is rallying in her own fight against mesothelioma. She has the fortitude, and her family will do anything to ensure her success in this fight. Together, they are seeking treatment and believing in prayers and the blessings of God to get them through this ordeal. They remain positive and hold on to hope.

We will keep you posted on the progress of this beautiful and compassionate woman and her family.

My Mother had a second evaluation by Dr. Cameron completed this month. This November will mark the one year time period from the date of diagnosis and she has come along way in that 12 month period and is now showing remarkable leaps in the overall recovery process.

She started the Interferon Injections on September 16, 2002 without side-effects and the process is relatively easy to inject. She also opted to start physical exercising under the care and direction of a personal trainer that she sees 2-3 times a week. This treatment combined with the physical therapist 2 times a week as proved to be a remarkable routine and the improvement has been excellent. She only dedicates about 6 hours a week to the routine but she is more active now, breathing much easier and is gaining back her old strength again. She is able to take walks in moderate time frames, do some shopping, and once again visit the beaches and enjoy small walks and dining that she so loved to do before that dreaded diagnosis in November of 2001.

The pain is only moderate now and is only occurring at times when she has done strenuous movement that day so the pain in the incision areas and the diaphragm is moderate to rare at this time. She has eliminated the need for prescription pain killers and is now only taking an over-the-counter pain reliever as needed. Of course, with the control of the pain, then the mental attitude has also greatly improved and there is more joy in day to day living.

They have also found their new home a mile from mine that is absolutely beautiful and what they have always wanted to own. They will be moving into it sometime in December and they are excited now to shop for their furnishings and other needed items to complete the home in time for Christmas this year. We plan a very special Holiday again this year with all the family members again flying in from out of state and this Holiday will be even more special as she is in remission and much healthier of course then she was at this same time last year when we faced the diagnosis and the upcoming surgeries and the fear of what would happen and how things would turn out.

Her weight is strong and she has even gained a few pounds which is showing her marked improvement. Her immune system is incredible and her blood work is excellent. She looks beautiful and there is no outward signs of illness in her appearance at all.

As a family and her personal thoughts are that she can beat this cancer and that they are making huge strides in the treatment of Mesothelioma and we are in close contact with Dr. Cameron at UCLA and other remarkable people assisting in, donating to or dedicating their time to helping with the treatment and cure of this disease. It is hopeful and promising at this time with all the new information that is becoming available.

I am specifically dedicating my time to assist where needed in the race for the treatment and cure of the disease. I am in contact with other patients other then my Mother and keep contact with their symptoms and progress as well. The small group of patients that we know of, some of whom were under Dr. Cameron's care and others under Dr. Sugarbaker's care are also doing quite well at this time. Some are only at the 6-8 month mark since treatment but others are at the 1 year or 1-1/2 years from their dates of treatment and still not showing signs of reoccurrence. This is uplifting and offers so much encouragement to others.

I know that the course of treatment of this disease is up to each individual patient and their families. However, it is our strong belief that with the doctors currently treating Mesothelioma, as in our case, Dr. Cameron, the treatment is worth every bit of time it takes to go through it and recover. The terms used to describe it to us initially was hideous, horrible, difficult etc. We found that the surgery was no more intense than any other major surgery and that the recovery and aftercare was relatively along the same lines. We would describe it as major surgery but not hideous in any way. My mother actually looked better after the removal of the tumorous tissues then before and yes, there was some days of intense pain but for the most part the pain was manageable and the recovery time was approximately 3-4 weeks for an almost full recovery from it. We cannot praise Dr. Robert Cameron enough for the brilliance and knowledge he has in the treatment of this disease. We still marvel at his abilities and his attitude in treatment.

Her incisions have healed well, some of them are almost completely gone, just small white lines at this point. Again there was some struggle in the aftercare issues but this was finally conquered by trial and error in what to do and what not to do and we are seeing the success of that now.

I am thankful and I thank God as we have seen the presence of him throughout this ordeal and know that we have had divine intervention to have been so fortunate. So many wonderful things have come from such a terrible situation. We have met wonderful people, we have had so many people help us that we did not even know, we have had some of the best doctors in the world, we have had wonderful and loving support from family and friends. We have also had wonderful opportunities present themselves that forever have changed the course of all our lives in a very positive way. I think that is important to share. It renewed my faith in God, in people and in the remarkable courage of people when faced with diversity of this magnitude. It made my stresses in life (the little things) pale in comparison and I realize how lucky we all are in the big scale of life.

I would like to continue to keep everyone posted on her progress as it is wonderful and exciting and positive.

We have met several people in our area that have recently been diagnosed with Mesothelioma through various medical facilities and were told that nothing could be done for them. These patients went home facing the possibility of short-term life with no hope. There is much work to be done in spending the word that there is treatment out there that is very promising that offers relief from the pain, the chance to prolong your life and the possibility and hope for a cure. These patients finally stumbled onto the information that is offered through MARF and other critical websites and from word of mouth more and more people are spending the word and referrals to Dr. Cameron at UCLA and Dr. Sugarbaker in Boston. We are dedicated in assisting in spending this information to the public and to other medical facilities who are not up-to-date and aware of all the treatment options available today to fight Mesothelioma.

The key point would be to seek immediate treatment with these doctors, never give up hope and continue to involve yourself in the fight.

Laurie MacDonald

An Update -- 6/22/04

Prepared by: Laurie MacDonald-Treiber (Daughter)

Prepared by: Laurie MacDonald-Treiber (Daughter)

I thought it was important to share that is has been 32 months since my Mom’s diagnosis of Mesothelioma (November 2001).  It seems so long ago that we were informed that she had this rare and incurable cancer.    We have also been fortunate that things turned out as well as they have for her.

The original prognosis was 12-16 months to live and treatment was originally described to us as experimental and not a cure which is true.  Most people we conferred with described the treatment as hideous and worse than the cancer itself.  This proved not to be the case for her.  It was not as severe as that description.  Yes, it was difficult.  The treatments were not a cure and she went through several months of pain and several more months of radiation treatment but we felt in her case that the aftermath of the surgery was worth the recovery that she has experienced since.   We realize that each person will have different results and different outcomes and we know that my Mom is one of the few fortunate ones that had such positive results.   

Since October 2002 her health has markedly improved overall.   Both she and my Dad are retired and are enjoying the leisure time they now have to relax a bit and enjoy life.  After various trial and error we have determined that my Mom responded extremely well to:

• A good overall diet (it is critical that the patient maintain weight)
• Working with both a physical therapists initially and then;
• A Personal Trainer on a regular basis each week.  Her overall stamina, breathing, energy and state of mind improved.   Exercise for her has been a critical key to overall well-being
• Avoiding Stressors as much as possible
• Continuous support – she has a very strong family support system

Her symptoms at this time are mild with some breathing difficulty only after over-exerting or in certain weather conditions which are both frustrating and at times scary for her.   

The pain in the back and around the front rib cage is mild and manageable.   She uses caution when exercising muscles in this area to avoid any damage to the muscle or bones. 

She has not had to use any pain killers or other medication for well over a year now.  She continues to do follow up testing and evaluations with Dr. Robert Cameron at UCLA every 3 months.   Occasionally she still battles sleeplessness and will take a sleeping aid but that too has improved over time.

She has extensive blood tests done and a CT/PET Scan done for his review through Hoag Hospital.    I am in touch with Dr. Cameron on a regular basis and I contact him with any irregularities or issues immediately so that he is apprised of her condition at all times.   She was on a low dosage of interferon for approximately 10 months.   Her blood tests on the 11^th month showed a low white blood cell count which is to low so she was taken off the interferon and proceeded to have her blood tested every 2 weeks for 8-10 weeks to see if the problem was the interferon usage.

With repeated testing over a 3-4 month period of time her blood count came up but was still not within the normal range.   She is continuing to be monitored regularly and may need to seek additional treatment to help assist her white blood cells.  Overall she is not feeling anything but minor symptoms from this problem and some fatigue.  However, it has been recommended that she go back to daily injections of the interferon but is unable to do so until her cell count is normal.   It is also possible that the interferon usage could have caused the drop in the white cells as a large majority of patients using interferon could suffer this particular side effect.

We thought at Christmas 2001 that we may never have an opportunity to experience Christmas 2002 and we have had the joy of 3 Christmas’s since the dreaded words from Dr. Zusman, “You have a rare lung cancer called Mesothelioma and it is terminal”.  We have had some very difficult times mostly during the initial diagnosis, treatment and than follow-up treatments (radiation) and recovery.  We have also had some of the most wonderful times during 2002, 2003 and now moving into 2004 in which my Mom has felt good, looked wonderful and was not in pain. 

We have learned so much about Mesothelioma over the course of this journey and we continue to learn every day.   As a family and as individuals, my Mom’s illness has changed all of our lives..   The old saying “life is to short” became our reality and we truly understood the real meaning of those words and have all adjusted our lives to live it.   We have met wonderful and caring people who have offered so much support and we have seen so many miracles that its been a truly spiritual experience that is difficult to explain in words.  We have also had our struggles.  It is a difficult thing-learning to live with incurable cancer.  It is hard to adjust for both the patient and the people who love them.   It is hard not to worry or project out the future at times and it is hard to fully accept it but you continue to have hope.   We take it one day at a time and our thankful for  each day.  My Mom continues to be a GREAT mom who even in an illness this serious is still the one teaching all of us the importance of life and the courage it takes to truly live it.  She really is remarkable in facing this devastating situation in her life.

Laurie

An Update -- 3/13/07

Five years after her pleurectomy with decortication surgery with Dr. Robert Cameron and five and a half years after being diagnosed with mesothelioma, Sue MacDonald and her family recognize they have been blessed. Sue was originally given a fourteen month prognosis provided she recovered well from the surgery and the follow-up radiation and interferon therapies. In March 2007, she has made it 63 months past surgery, but more importantly, she is not just alive, she is living.

While Sue’s health limits her ability to do some activities, she doesn’t hesitate to shop, go to the grocery store, or take walks on the beach with her family. Sue works out with a personal trainer twice a week for about an hour and a half, working with weights and limbering up her upper body. For a portion of that time she walks on a treadmill, as well and works on breathing exercises, too. Once every two to three weeks, especially when the humidity gets bad, Sue’s breathing becomes too labored and she has to use one of the small oxygen bottles the family keeps around the house.

Gerri recalls how the whole thing started over five years ago when Sue quit smoking and began to exercise at her doctor’s bequest. Soon after that, she noticed she was short of breath and coughing much more than what a “smoker’s cough” would be. After weeks of doctor visits, Sue was diagnosed with mesothelioma. That’s when Laurie, their oldest daughter, began her research online and found three specialists across the nation, including Dr. Cameron, was also luckily, close to home. Beginning on day 1, Laurie chronicled all of the research she conducted, specialists’ opinions, doctor visits, tests results, and Sue’s health in a binder. The MacDonalds still have every piece of paper that Laurie catalogued, neatly organized into three large binders, each eight inches across. Gerri says that Sue would not be here if it weren’t for Laurie who became the expert on mesothelioma, arranged the medical visits, and oversaw every phase of treatment. He believes they have been blessed by God who has given Sue this time to spend with family, blessed by Laurie’s diligence, and blessed by Dr. Cameron’s superb medical treatment.