Thelma Strong - Maureen's Journey
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In the Illinois Wine circle, my sister and her wife are known as “Thelma and Louise”. But in our family, they are Maureen (“Thelma”) and Kris (“Louise”). My sister-in-law Maureen Rapier, my sister Kris Kufa and their six children have had a rough time these last six months. Their lives have been turned upside-down by a medical situation that took them completely by surprise.
Maureen was diagnosed in 1997 with carcinoid/Neuroendocrine cancer, which is a slow-growing cancer. Until 2008, it didn’t cause much of a change in her lifestyle. But then in August 2008 Maureen got very sick. Her legs swelled, she lost weight and had no energy. An MRI showed the Neuroendocrine tumor had grown to a grapefruit size tumor in her abdomen and it was shutting off function of one of her kidneys. Surgery was scheduled. The doctors at Loyola University Medical Center planned to remove the tumor in her abdomen and her right kidney, as well as give her a hysterectomy. Unfortunately, the tumor proved to have too much vascular involvement. Nothing could be removed surgically. So chemotherapy was given periodically over the next three years to keep the tumor under control. CT and MRI scans were done to monitor her abdominal tumor. Things seemed to be going as well as they could be.
Then in April 2014, Maureen began getting terrible pains in her neck. An MRI showed Maureen had a large tumor in her cervical spine (back of her neck, in layman's terms) that was pressing on her spinal cord. She would need surgery ASAP to keep her from being paralyzed or dying. After a whirlwind of tests and doctor visits, the Neurosurgeon set the date for Friday, May 9, 2014.
On Tuesday, May 6th, Maureen found she was having a difficult time walking and using her hands. A PET scan and pre-operative bloodwork was planned that day at Loyola; Kris had to push Maureen in a wheelchair throughout the hospital. A doctor prescribed pain-killers to help her get through the next three days until surgery, and they went home.
The pain-killer didn’t alleviate the pain and made Maureen violently ill. That same evening, Kris decided that it was time to go back to Loyola. Maureen had taken a turn for the worst. She had to be carried to the car by one of their sons. After several hours in the emergency room, Maureen realized she was paralyzed. As the nurse called for the Neurosurgeon again, monitors went off. Maureen had stopped breathing. The nurse ordered steroids STAT and ran for assistance. She told Kris to remind Maureen to keep breathing. The Neurosurgeon was there in a matter of seconds. He said she was now “CRITICALLY URGENT” and they were rushing her into emergency surgery.
Maureen’s surgery lasted 5 ½ hours. She woke up in recovery happy to be alive. The tumor was larger than expected and was removed except for a small amount that was wrapped around a vertebral artery; that would require radiation treatment after healing from surgery. The Neurosurgeon removed disks C1, C2, and C3 and put a metal rod, a plate, three cadaver vertebrae, and three screws. This meant she would lose 90% mobility in her neck. An eight-inch scar running from the back of her head to the base of her neck closed with 35 staples is her battle scar.
Declared “a miraculous recovery”, she was able to move her fingers and toes, and was able to breathe on her own when the ventilator was removed two days later. Ten days of in-patient physical therapy in the Rehabilitation Unit would be necessary to re-learn how to walk, use her arms, legs, fingers and do daily tasks like feeding herself and brushing her hair, etc. The biopsy of the tumor showed it is Neuroendocrine cancer, the same cancer that is in her abdomen.
It wasn't long into that hospital stay before the doctors told Maureen and Kris that the PET Scan on May 6th found evidence of a tumor in Maureen's right breast. A bedside biopsy confirmed the tumor was a malignancy that needed to be removed soon. After a 16-day stay at Loyola they were going home. If Kris couldn’t take a leave of absence from her teaching job, however, Maureen would be moved to a rehab facility since she couldn’t take care of herself at that point. It was decided that Kris would take an unpaid leave from her teaching job for the remaining 6 weeks of the school year.
A lumpectomy was performed on June 3rd, the second surgery in less than a month. The surgeon was able to remove a 4cc breast tumor completely. It was diagnosed as a Metaplastic Carcinoma, an aggressive breast cancer. It also was declared triple negative. It is extremely rare and less than 1% of breast cancers are this type. In fact, this cancer is so rare that there is no treatment data about it. And, like Neuroendocrine cancer, it typically does not respond to chemotherapy.
After healing for a few days after the lumpectomy, Maureen began radiation on her cervical spine tumor that was left behind on the artery. It required five days of travelling to Loyola. Then beginning in August for six-and-a-half weeks, Monday thru Friday, Maureen and Kris made the daily trips to receive radiation treatments for the breast cancer. This meant Kris would take every afternoon off of her teaching job for the first 6 weeks of the school year. After the first few weeks, Kris was once again out of sick days, so the rest of the FMLA would have to be unpaid. On September 22nd, Maureen and Kris celebrated the end of radiation with the ‘ringing of the bell’. Finally, they thought, the rough times are over.
The oncologist ordered another PET scan in October for comparison, just to check how radiation treatments took care of her cancers. The bad news was not over because the scan showed a metastasis of cancer to Maureen’s bones. A second scan, an MIBG scan, verified the Neuroendocrine and Metaplastic Carcinoma has spread to Maureen’s bones. With this new diagnosis, the doctors’ appointments and scans and treatments are not going to end in the foreseeable future. In fact, Maureen begins weekly IV chemotherapy ‘cocktail’ on Monday, November 3rd to try to keep the cancer from spreading any further. Again, Kris has to take work off to take care of Maureen. Another battle has begun, along with more medical expenses.
My sister and her wife are not people who ask for help. They are strong women who try to find the silver lining in every cloud. But the time has come for them to be able to focus on taking care of what is important – Maureen’s health. These last six months have been trying for their family emotionally, mentally and physically. They have also been hit financially since Kris has missed, and will continue to miss, work. The medical expenses, travel to and from appointments also has added to their expenses – gas, tolls and parking. So, those of us who love them, and their family, want to give them the assistance they need.
Maureen was diagnosed in 1997 with carcinoid/Neuroendocrine cancer, which is a slow-growing cancer. Until 2008, it didn’t cause much of a change in her lifestyle. But then in August 2008 Maureen got very sick. Her legs swelled, she lost weight and had no energy. An MRI showed the Neuroendocrine tumor had grown to a grapefruit size tumor in her abdomen and it was shutting off function of one of her kidneys. Surgery was scheduled. The doctors at Loyola University Medical Center planned to remove the tumor in her abdomen and her right kidney, as well as give her a hysterectomy. Unfortunately, the tumor proved to have too much vascular involvement. Nothing could be removed surgically. So chemotherapy was given periodically over the next three years to keep the tumor under control. CT and MRI scans were done to monitor her abdominal tumor. Things seemed to be going as well as they could be.
Then in April 2014, Maureen began getting terrible pains in her neck. An MRI showed Maureen had a large tumor in her cervical spine (back of her neck, in layman's terms) that was pressing on her spinal cord. She would need surgery ASAP to keep her from being paralyzed or dying. After a whirlwind of tests and doctor visits, the Neurosurgeon set the date for Friday, May 9, 2014.
On Tuesday, May 6th, Maureen found she was having a difficult time walking and using her hands. A PET scan and pre-operative bloodwork was planned that day at Loyola; Kris had to push Maureen in a wheelchair throughout the hospital. A doctor prescribed pain-killers to help her get through the next three days until surgery, and they went home.
The pain-killer didn’t alleviate the pain and made Maureen violently ill. That same evening, Kris decided that it was time to go back to Loyola. Maureen had taken a turn for the worst. She had to be carried to the car by one of their sons. After several hours in the emergency room, Maureen realized she was paralyzed. As the nurse called for the Neurosurgeon again, monitors went off. Maureen had stopped breathing. The nurse ordered steroids STAT and ran for assistance. She told Kris to remind Maureen to keep breathing. The Neurosurgeon was there in a matter of seconds. He said she was now “CRITICALLY URGENT” and they were rushing her into emergency surgery.
Maureen’s surgery lasted 5 ½ hours. She woke up in recovery happy to be alive. The tumor was larger than expected and was removed except for a small amount that was wrapped around a vertebral artery; that would require radiation treatment after healing from surgery. The Neurosurgeon removed disks C1, C2, and C3 and put a metal rod, a plate, three cadaver vertebrae, and three screws. This meant she would lose 90% mobility in her neck. An eight-inch scar running from the back of her head to the base of her neck closed with 35 staples is her battle scar.
Declared “a miraculous recovery”, she was able to move her fingers and toes, and was able to breathe on her own when the ventilator was removed two days later. Ten days of in-patient physical therapy in the Rehabilitation Unit would be necessary to re-learn how to walk, use her arms, legs, fingers and do daily tasks like feeding herself and brushing her hair, etc. The biopsy of the tumor showed it is Neuroendocrine cancer, the same cancer that is in her abdomen.
It wasn't long into that hospital stay before the doctors told Maureen and Kris that the PET Scan on May 6th found evidence of a tumor in Maureen's right breast. A bedside biopsy confirmed the tumor was a malignancy that needed to be removed soon. After a 16-day stay at Loyola they were going home. If Kris couldn’t take a leave of absence from her teaching job, however, Maureen would be moved to a rehab facility since she couldn’t take care of herself at that point. It was decided that Kris would take an unpaid leave from her teaching job for the remaining 6 weeks of the school year.
A lumpectomy was performed on June 3rd, the second surgery in less than a month. The surgeon was able to remove a 4cc breast tumor completely. It was diagnosed as a Metaplastic Carcinoma, an aggressive breast cancer. It also was declared triple negative. It is extremely rare and less than 1% of breast cancers are this type. In fact, this cancer is so rare that there is no treatment data about it. And, like Neuroendocrine cancer, it typically does not respond to chemotherapy.
After healing for a few days after the lumpectomy, Maureen began radiation on her cervical spine tumor that was left behind on the artery. It required five days of travelling to Loyola. Then beginning in August for six-and-a-half weeks, Monday thru Friday, Maureen and Kris made the daily trips to receive radiation treatments for the breast cancer. This meant Kris would take every afternoon off of her teaching job for the first 6 weeks of the school year. After the first few weeks, Kris was once again out of sick days, so the rest of the FMLA would have to be unpaid. On September 22nd, Maureen and Kris celebrated the end of radiation with the ‘ringing of the bell’. Finally, they thought, the rough times are over.
The oncologist ordered another PET scan in October for comparison, just to check how radiation treatments took care of her cancers. The bad news was not over because the scan showed a metastasis of cancer to Maureen’s bones. A second scan, an MIBG scan, verified the Neuroendocrine and Metaplastic Carcinoma has spread to Maureen’s bones. With this new diagnosis, the doctors’ appointments and scans and treatments are not going to end in the foreseeable future. In fact, Maureen begins weekly IV chemotherapy ‘cocktail’ on Monday, November 3rd to try to keep the cancer from spreading any further. Again, Kris has to take work off to take care of Maureen. Another battle has begun, along with more medical expenses.
My sister and her wife are not people who ask for help. They are strong women who try to find the silver lining in every cloud. But the time has come for them to be able to focus on taking care of what is important – Maureen’s health. These last six months have been trying for their family emotionally, mentally and physically. They have also been hit financially since Kris has missed, and will continue to miss, work. The medical expenses, travel to and from appointments also has added to their expenses – gas, tolls and parking. So, those of us who love them, and their family, want to give them the assistance they need.
Organizer
Michele Horst
Organizer
Castle Rock, CO
