We decided to start this blog to document the journey of my beloved mother-in-law, Mrs. Barbara, as she battles Stage 3 cancer. Our hope is that we can update our family and friends about her progress and new developments, while sharing the reality of the pilgrimage to healing…the beautiful parts, the hard and ugly parts, and the realization that God is with us in the joy and the pain. I heard on the radio last night that “Suffering is not the absence of God’s love because He is present in the pain.” How true!! God is, and has been, all over this journey, and we will continue to share that with you.
Mrs. Barbara and Coach (Charles) have decided to seek an additional opinion from MD Anderson in Houston, TX. She has an appointment there on Tuesday next week. I will be traveling with them, as well, and plan to keep everyone updated along the way.
For those who may not know what is going on, below I will describe the journey up to this point…
In October of 2013, Mrs. Barbara began having some abdominal pain and indigestion. She sought the care of her GI doctor, and when he found nothing on CT scan, he encouraged her to see an OB/GYN. She eventually followed up with an OB/GYN, and this doctor, after doing an ultrasound, also found nothing to explain the symptoms. Off and on for the next several months, she continued to have the symptoms. In August/September of 2014, the pain increased, became more regular, and she noticed a distention in her abdomen. Her work pants began to fit tighter and her pain was keeping her up at night. In early October, she called the GI doctor and he ordered a CT scan and ultrasound. After reading the report he immediately referred her to a gynecological-oncologist (gyn/onc). Her first appointment was on a Monday. This GYN/ONC had her in surgery that same Wednesday for a “debulking” surgery.
During her surgery they removed a volleyball sized tumor which had begun to attack her bowels. They removed her omentum (a fatty organ protecting the intestines), a significant amount of mesentery, the main tumor, 12-15inches of small intestine, 12inches of sigmoid colon, her right ovary and fallopian tube, and several smaller tumors in her abdomen. She remained in the hospital for 13 days. While there, she received a beautiful prayer shawl from church that she wrapped up in every day and beautiful cards and flowers, gifts and fruit arrangement. After returning home from the hospital she had a wonderful surprise visit from Nick and his family. A week later, she met with the GYN/ONC and pathology showed that she has Stage 3C carcinosarcoma. Pathology was unclear of whether the cancer originated from the ovary or was considered “primary peritoneal” so to make things easiest, it has been called Stage 3C ovarian carcinosarcoma. Both types of cancer are initially treated the same way by the same type of oncologist. A first-line treatment plan was suggested: 6 cycles of chemotherapy using carboplatin (a platinum drug) and taxol. This type of cancer, carcinosarcoma, is rare (Only 2% of ovarian cancer is carcinosarcoma) A few days later she had a chemoport placed in her chest that they would use to deliver the chemo through. They checked her blood levels including a test called CA-125 which is a tool to judge how much cancer/inflammation is in the body. Hers started at 78.8 after surgery. She had an orientation with the chemo nurse on 11/18/2014, where she told us everything we needed to know about the chemo treatments, showed us the chemo treatment room, and they took additional bloodwork. The chemo nurses have been amazing, graciously and compassionately answering our 5 million questions! That weekend, Chad surprised Mrs. Barbara with a week-long visit over Thanksgiving…just what she needed to begin her 1st chemo treatment on 12/1/2014!
Family and friends came together put together a chemo care package with a bag to bring to chemo appointments, photo album with old and new family photos, chemo care essentials, a notebook for tracking all her appointments, labs, insurance info, side effects, etc., a journal for writing, a devotional and pens, little stuffed animals and so many other helpful items (She still uses several of these!). Others sent her cards which were placed in her bag each week for her to read during chemo treatments (because family isn’t allowed in the infusion room with you). She LOVES reading the cards!
Chemo was TOUGH! On Cycle Day 1 she received both drugs and on Cycle Day 2 she received Neulasta, an injection to stimulate the bone marrow to produce white blood cells (WBCs). This helps keep her immune system stronger while the chemo does its job. On Cycle Days 8 and 15 she would receive just the Taxol. She would get her blood drawn every week to check her immune system (chemo can attack this and make a person not able to fight off infection or need blood/platelet transfusions). At the end of each cycle they check the CA-125 again. Cycle 1 went well as we learned how she responded to treatment and on what days she felt better and which days were the bad ones. We found a “pattern”. We spoke with nutritionists and read books on which foods helped what side effects. We went back and forth with insurance to get all the meds she needed covered. Nausea seemed to be her biggest battle. She was also battling the pain from the Neulasta injection (caused severe bone pain in the first week after getting it) and still recovering from the surgery, but overall each day would get better. On week 3, her hair began to thin significantly, and she was fitted for a free wig by the American Cancer Society. They are an AMAZING resource for cancer patients and their families! By the end of Cycle 1, we were getting the hang of things, her CA-125 had dropped to 39, and there was an amazing surprise visit from Chad and his family!
Cycle 2 began with the visit with Chad and Jacqueline’s families. But by the end of the week, the nausea was unbearable and vomiting started. Her GYN/ONC told her to go to the ER for fluids and nausea management, which helped tremendously. From that point on, we had a nausea management chart and kept all her meds constantly in her system to stay ahead of it. Compazine, Phenergan, and Reglan Oh My! She took them all! Her GYN/ONC also began giving her a new drug, Emend, during chemo treatments to help stay ahead of nausea. We also began to notice that the Decadron you are required to take before receiving chemo was causing her to have anxiety, so we began to look for a Palliative Care specialist to help us manage the side effects of treatment. By the end of Cycle 2 we felt we were managing things much better, her CA-125 was down to an amazing 9.7 (hallelujah!!), but Mrs. Barbara began to feel a butt bone pain and made sure she told her GYN/ONC at her Cycle 3 appointment.
Cycle 3 began on February 26th. After telling her GYN/ONC about the butt bone pain, she realized the doctor was concerned. She ordered a full body bone scan, which came back negative, so she then ordered a CT scan. She wanted to make sure that she was not missing something…an action we are very grateful for, as she was not going to do a CT until after completing 6 cycles. The CT revealed a new tumor growth in the area of the original large tumor. Her doctor informed her that she would be referring her to a specialist at the Vanderbilt Cancer Center. She completed her Cycle 3 treatment and we waited for the first appointment at Vanderbilt. During her 2 weeks off of chemo, she felt great and even made a trip down to Baton Rouge to visit family and surprise Maw Maw Dean for her birthday! It was a wonderful time spent with family and friends!
On March 2, we visited a medical oncologist in the Vanderbilt Cancer Center. She discussed how the Vanderbilt system works and then got us set up to see a GYN/ONC within Vanderbilt and also with the Palliative Care specialist. She also checked her CA-125, which was 10.9, which confirmed that the CA-125 test probably isnt a good tool for Mrs. Barbara as the number continued to drop while she had cancer growing in her body. On March 16, we met with the new GYN/ONC and she discussed more in detail about Mrs. Barbara’s cancer diagnosis. She explained how rare carcinosarcoma is and that once the first-line treatment fails, there isnt as much success with other chemotherapy drugs. She mentioned starting a chemo drug called, Doxil, but mentioned that it has about a 20% chance of working and some not so great side effects. We left that appointment with a reality check on the severity of Mrs. Barbara’s disease, but a strong desire to do more. By that evening, we started the process of a 2nd opinion.
Within 48 hours, we had 2 appointments, 1 to MD Anderson (MDA) in 1 week and 1 to Cancer Treatment Centers of America (CTCA) in Atlanta by the end of the month!! Praise God! We will keep the 2nd appointment at CTCA in case MDA isn’t a good fit for Mrs. Barbara, and if MDA works out, we will hold off on CTCA. Both institutions have been full of compassion and fantastic to work with. After some hours of research and joining a support group of others with carcinosarcoma, we are encouraged and inspired by the treatment options potentially available. Though just over 4 weeks with no chemo, Mrs. Barbara still is feeling the effects of the drugs. She has “chemo brain” (a foogy-headed feeling where you forget things and misinterpret things, so if you talk to her, give her grace here!), just lost her eyebrows and lashes this week, but is physically feeling much better. We hope this break has been what she needed to build up some strength to take on whatever is coming around the corner. Just over 5 months post-diagnosis…it has been a roller coaster of emotions, a journey taken day by day, a humbling experience, another witness to the loving/giving/supportive nature of others, and a clear reminder to let go and let GOD. Whatever has been needed along the way, He has clearly provided it, and because of that we are trusting in what He has planned going forward.
So, if you made it this far, we’d love for you to join us on this Pilgrimage to Healing!