January 21, 2018
Ray, Anne’s husband, and Holly, an excited fluffy lab-mix, met me at the gate. Inside the fire was keeping the house a balmy 75 degrees (so the Floridian guest didn’t get too cold, I was told), Christian music played the background, and the smell of roasted pork ribs was coming from the oven. Anne apologized as she finished dusting a shelf, explaining she wanted to get as much done while she still could.
This was the night before Anne went to her fourth surgery in less than three months. As we sat around their table with a red folder that holds every discharge paper, pamphlet, and medication sheet from the last three months, they shared the details of the events leading up to this point.
“The red folder” is always with Anne. It contains every document since starting this journey.
September 2017: Anne started experiencing symptoms: fatigue (low energy, not exhausted), weight loss without trying, constant lower back pain, and bladder infection. However, she attributed each symptom to something else, as each in itself is not cause for alarm.
October 28: Anne felt a mass in her lower abdomen and thought about scheduling an appointment.
October 31: Anne started having heavy bleeding and clotting that was not part of her normal cycle. She went to UrgentCare at the local naval hospital and was prescribed a high dose of birth control pills.
November 2: Ray took her back to UrgentCare. While checking in, the corpsman noticed Anne was extremely pale and immediately took her into the exam room where she was given IV Estrogen to try to slow the bleeding. The doctor consulted with OB/GYN, trusted his gut, ignored their recommendation, and admitted Anne to the hospital for further observation. An ultrasound was performed to reveal what was thought to be a fibroid.
November 3: The bleeding was not stopping. The doctors started blood transfusions and more medications to contract the uterus to stop the bleeding so surgery could be performed to remove the fibroid. Ironically, and through no fault of the doctors, all the hormones were actually “feeding” a tumor.
Anne prepares a family favorite the night before surgery.
November 4: The blood transfusions were going straight through. Anne headed to surgery to have what was thought to be a large fibroid removed. In surgery, the doctors could not find the blood supply to the fibroid or her uterers (the tubes from the kidney to the bladder). Fearing they would not have enough blood on hand or cause more harm than good, the doctors stopped the surgery and life-flighted her to a larger military hospital. In what was supposed to be a standard hour and a half procedure, Ray was left waiting for four hours. Anne only remembers bits and pieces of this day and has relied on the hospital staff and family to fill in the holes.
November 6: This time with gynecological oncologists, Anne went to her second surgery where they had to perform a complete hysterectomy. Within twenty minutes of sending a sample of the grapefruit sized “fibroid” to pathology, it was confirmed that she had cancer. Since Anne was first admitted to the hospital, she had received 12 blood transfusions.
November 8: The type of cancer was determined: leiomyosacroma (LMS).
November- December: At this point, Anne did not consider herself a cancer patient. They had gotten it all. Now she just needed to recover. However, that was slowed by an infection. Luckily, Anne’s mother-in-law was able to come to help care for Anne’s son and the house as Anne was not allowed to drive. Anne began doing general research of LMS and joined a local women’s cancer support group.
Anne slowly regained her strength. She started walking on the track at the Y. Her mother-in-law was able to return home. She started to feel normal and get back into the daily routine. She had a PET scan, but its results were inconclusive because her body was still healing.
On one side the medical equipment that has become necessary for Anne post-surgery. On the other side, Anne’s gym bag as become her hospital bag. She did pack her resistance bands, but don’t worry. Ray took them away.
January 4: Eight weeks post-surgery, an MRI revealed the cancer had returned. The tumor measured 7 centimeters. Anne’s mother-in-law returned. After a brief period of “why me,” Anne began more targeted research on everything related to LMS including treatment options, coping strategies, and chemotherapy
January 5: Anne made the following post on her Facebook page. (Names and locations have been omitted.)
Now that family knows, I figured I’d put the word out here. This past Wednesday, I had an MRI, followed by an appointment with my gyn oncologist. The cancer has returned. I go in early Tuesday morning for a biopsy for verification, and also to have a port put in for chemotherapy. Yes, the next step is 6 rounds of chemo. We’ll be seeing a local medical oncologist for the chemo, so I’m not traveling the distance home (from the military hospital). My care will still be overseen by my gyn oncologist (at the military hospital), so regular trips will still happen. I need you all to understand, leiomyosarcoma is a rare, aggressive type of cancer. According to the National Organization for Rare Disorders, only 6 in 1,000,000 women in America will be diagnosed with uterine leiomyosarcoma every year. It also only accounts for 1-2% of malignant uterine tumors. Mine is even more rare. It was in my cervix. Honestly, Google has not been my friend lately. Because it’s not something that a lot of women have, there is not a large base population to study for long-term survival rates. The percentages aren’t in my favor because of that. It’s why I felt compelled to donate a paraffin block of my tumor to a tissue bank for researchers to study. It’s why I registered as a patient for the Coordination of Rare Diseases at Stanford. It’s why I’m grateful and blessed to have a doctor send me in to get scanned a month before I was scheduled to. It’s why I’m doing everything I can not to crawl inside myself and give up. I need to be around to properly embarrass my teenager. While I haven’t seen the word “cure” associated with this type of cancer, I have “met” through Facebook LMS support groups, many women who live with this disease for years. I look at this as disease management. There are many diseases out there in which there is no cure for. I just so happen to be “extra special”, and have one that happens to be cancer.
This post was followed by an outpouring of offers of help drive, cook, clean, and just be with Anne’s family. Gifts from friends around the country arrived at her door: books, socks, blankets, lotions, brownies, and a prayer quilt.
Friends and family are invited to silently say a prayer (or positive thoughts) as they tie a knot on the prayer quilt. It is never far from Anne.
January 9: Anne went to her third surgery to have a port placed and a biopsy of the tumor taken. They joked she got a “two for one” deal: two procedures, one appointment. At this point her doctors consulted with other specialists to determine the best course of action.
In true Anne form, as the young doctor was explaining the port procedure and the chance it may slide down into her breast tissue, she asked if she could get a lift if that happened.
January 14: Anne posted the following on her Facebook page:
…Side note tonight. And I said this at church today, the strength you see in me, is not from me. My strength, currently, is from all the amazing people who keep me (and my boys) in their daily prayers and positive thoughts. If it was just me, I’d still be curled up in bed, covered in my blankets, only getting up to use the bathroom. This, is larger than I can handle by myself. So, thanks to all of you who are giving me the strength to battle, and beat, the monster inside of me. Cancer will not win!
January 18: Anne got a pre-chemo haircut, and her doctor called to inform her of their recommendation. While hesitant to subject her to another surgery, the rapid growth of the tumor required its removal before starting chemotherapy. She would be having her next surgery on January 22.
A glance at Anne’s end table will reveal the important parts of her life: Jesus, health, raising a teenager, and surviving cancer.
Nothing about Anne’s journey so far has been “normal.” In retelling the events, her family jokes at every unanticipated event and exception that was made (life-flight, 12 blood transfusions, etc.) is because Anne is “special.” They joke, but we all know it is true. It will take a special person to walk this path, to bring awareness and education by being honest and vulnerable, and without trying, bring people together to support her along the way.