LUNG FORCE Heroes
Beth's story really begins with her mother. In 1981, Beth's mother Rita, found out she had cancer quite by accident. Rita had fallen and thought that she may have broken a rib. Further tests revealed that she had cancer that was widespread to her lungs. She was given a grim prognosis with only six months to live. In September, 1981, Beth's mother Rita lost her short battle with cancer only six months after her initial diagnosis, leaving behind six children, the youngest, Kevin, only eight years old.
Journey ahead 32 years to May of 2013. Beth had been struggling with completing her thoughts and sentences. She scheduled an appointment with her family doctor to see if there was anything that might be causing her issues. Beth had suffered from migraines in the past and was hoping that her struggles may just be stress related. Our family doctor gave Beth a script for a cranial MRI just to rule out any issues with her brain.
A few days before Beth's scheduled MRI, she was at an end of year school concert at Shaull Elementary school where she taught an autistic support class for 3rd through 5th grade students. A fellow teacher noticed that she didn't seem to be herself. She said she wasn't feeling well and was going to go home. Her fellow teacher stopped her and realized something was very wrong. Beth didn't know what year it was and failed to answer some easy questions. The teacher who was also an EMT called for an ambulance, fearing that Beth may be having a stroke. I was in Ohio at the time helping our daughter, Corinne, move back home from college for the summer. Beth's principal called me to let me know that Beth was being taken to the hospital. The principal was able to contact my son Zach and daughter, Jen at our house, and they met Beth at school and followed the ambulance to the hospital. Beth's friend Hope also met Beth at the hospital.
Beth was given an cat-scan as soon as she got to the hospital. The doctor told Zach and Jen that Beth had a brain tumor. I kept calling Zach on our seemingly endless ride to see if they had any news on Beth. When Zach told me that we could talk when I got there, I knew the news wasn't good. We drove straight to the hospital with the car fully packed with everything from Corinne's dorm room. When we got to the hospital and found out about diagnosis I immediately realized that Beth had taken the news much better than anyone else. The ER doctor said they were going to admit Beth and do some more tests in the morning.
We all went home later that night except for Beth, of course. I remember praying that this was just all a bad dream. The next morning I went back to the hospital where they gave Beth a CT-scan to see if the brain tumor was a primary tumor or a metastasis that had spread from somewhere else. When Beth came back to the room following the CT-scan, a nurse pulled me aside and said "I don't mean to scare you but the results are really bad". She went on to say that an Oncologist had been called and should be there shortly. Beth only said to me "Please don't let them tell me anything bad". I barely heard her say those words and turned to my right to see the oncologist standing next to me. I asked the doctor to step outside to talk privately. The oncologist told me that Beth probably had lung cancer that had spread to her liver, spleen, kidneys and of course her brain. She told me that Beth could be treated palliatively and that her Stage IV disease was incurable. She said that Beth didn't have weeks or months to live but she definitely did not have years to live. I pleaded with the doctor that there must be something we could do to give Beth a chance to grow old with me.
Beth's brain tumor was removed successfully and she was home and in good spirits within a few days. Beth never wanted any of her doctors to put a timeframe on her prognosis. She wanted to remain positive and do whatever she needed to win her battle with cancer. She would always ask me "Am I going to be OK". I would somehow always answer her with a smile and tell her, "You'll be OK". Beth enlisted her "prayer warriors" throughout her battle and remained positive and confident.
We went to John's Hopkins hospital in Baltimore to get a second opinion. Beth's sister and our brother-in-law went with us for support. The news was the same and the doctor told my brother-in-law and me that on average someone in Beth's condition had a 10 percent chance to live for nine months. Her doctor at Johns Hopkins called Andrews & Patel Oncologists in Camp Hill and helped us to get Beth started with chemotherapy shortly after that.
Beth also had a gamma knife surgery on her brain to make sure that the brain tumor was fully removed. Beth did extremely well with her initial chemotherapy. She responded so well that she started treatments which were considered more of a maintenance chemotherapy. Beth continued to do very well for several more months. She would go for chemotherapy every three to four weeks and she scheduled them on Wednesdays so that her worst days were Saturday and Sunday and she wouldn't have to miss school that way. Beth would go for chemotherapy in the morning and go to school immediately afterwards.
Beth's battle against cancer was a roller coaster ride. She responded well to her initial treatments and was able to be on a maintenance regiment for a while. Eventually her cancer had spread to the lower part of her spine and she needed to undergo radiation treatments. The radiation treatments were hard on her and she ended up losing a significant amount of weight. The cancer and the radiation treatments left her with neuropathy or numbness in her right leg. Her cancer had also once again spread to her brain and she underwent another gamma-knife surgery to mitigate two small tumors in her brain.
With the help of two doctors at Andrews & Patel, we were able to get an appointment at Dana-Farber in Boston for genetic testing on Beth's cancer cells. They found out that her cancer had a HER-2 mutation which is common in breast cancer but not common in lung cancer. There is an immunotherapy treatment for HER-2 mutations for breast cancer that is very effective. However, treatment was not approved by the FDA for lung cancer, and Beth's insurance would not approve the treatment for her.
Throughout Beth's fight against cancer she never complained or felt sorry for herself. The only time I saw her cry was just before her last Christmas. She was going to start a new line of chemotherapy which would most likely cause her hair to fall out. We went to a salon to find a wig for Beth. She started to cry when she was having her hair trimmed for the wig to fit better.
Beth did very well with the new treatments, but with all chemotherapy certain cancer cells can be resistant to the chemotherapy. We started investigating clinical trials with the help of her doctors at Andrews & Patel. We went to Sloan Kettering in New York to see if Beth would be eligible for a Trial being administered there, but were told that the trial was already full. Beth had just had a CT-scan before the appointment and her result were promising. The doctors at Sloan-Kettering thought that she was doing well based on recent test results and thought that continuing her treatments were the best thing to do.
Beth had always wanted to go on a family cruise and we were able to make that happen last June. Towards the end of the cruise Beth was very tired and dehydrated and we spent the last two days in the ship infirmary were Beth would receive fluids to help with her dehydration. While we were on the cruise one of her doctors was able to gain approval for Beth to receive treatment of an immunotherapy drug that was effective for treating HER-2 cancer mutations. She would be able to start the new treatment immediately.
Beth was starting to become more fatigued and weaker when we got back home but she was looking forward to a trip to visit her sister in North Carolina along with her other sister. Her trip started out well, but on her return she became weaker. Her sisters convinced her to stop at an ER on the way home. Beth only agreed to stop because her niece was an ER nurse at the hospital they stopped at. Beth's oxygen levels were very low and she was sent home with a portable oxygen tank which she used for the remainder of her life. We contacted the Hospice of Central PA so that Beth could receive palliative hospice care. We didn't want to place her in full hospice care because she wanted to continue to fight her cancer and receive treatments.
Beth continued to receive chemotherapy but continued to lose weight and continued to become more fatigued. She was starting to have problems with her speech and an MRI on her brain revealed that her cancer had spread to her brain in many locations. She underwent 15 whole brain radiation treatments over the course of 4 weeks. She continued to get weaker and would be able to get up and downstairs by crawling backward with my help. It would take 25-30 minutes to get from one floor to the other. Eventually Beth needed a wheelchair to get around, and would sleep on an inflatable mattress in the family room while I slept on the couch next to her with "one-eye open". I would often help her out of bed to help her into her wheelchair and hold on and hug her and tell her she would be OK, because I never wanted her to give up hope.
Beth lost close to 50 Lbs in 6 weeks from the middle of July until the end of August. She was looking forward to the end of August for the wedding of our oldest child, Zach to his wonderful wife Erica. Beth continued to get weaker and weaker but was able to attend Zach and Erica's wedding. She made it to the ceremony and the beginning of the reception, but was too weak to enjoy any of the dinner and celebration. Over the next two weeks Beth's health continued to decline. She continued her weekly immunotherapy treatments because she wanted to beat her cancer. I vividly remember her last visit to Andrews & Patel. The doctor came back to the room to talk with Beth and asked her if she wanted to receive her treatment and if she was up to it. Beth replied "give me whatever I can take." He replied "Ok, that was very clear".
The Friday after Beth's last immunotherapy treatment, I called The Hospice of Central of PA to ask them for complete Hospice care. A hospice nurse came to our house by 2 p.m. to start hospice care immediately. A hospital bed arrived at 4 p.m. and was assembled and ready by 5 p.m. My brother-in-law Dan and I lifted Beth into her bed as soon as it was available. One of us was by her side continuously.
Around 7 p.m. that Friday night, my niece Rachel said it is time. We gathered around Beth in her hospital bed in our family room. Beth's breaths became distant, our dog, Gus started to become increasingly active circling the room and kept barking. As Beth took her last breath, Gus our dog kept looking up at the ceiling and circled towards the door. Beth had passed surrounded by her family.
In summary, Beth was diagnosed with Stage IV lung cancer at the age of 50. She had never shown signs of respiratory issues and never smoked. The lung cancer was found after it had spread to her brain, liver, spleen, kidney, and spine and was evident when her speech was impaired. Beth had brain surgery, two gamma knife surgeries, three different courses of radiation treatment and six different chemotherapy/immunotherapy treatments. Throughout her treatment Beth never complained or thought why me. She fought valiantly and never gave up hope.
Beth's mother was the third daughter in her family, Beth was the third daughter of her parents, and Brooke is the third daughter of Beth and myself. I will do everything I can to prevent what happened to Beth and her mother from occurring a third time.
First published: January 26, 2017
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