It all started when football season opening Sunday's chili seemed to want to launch it's own attack the next morning in September 2015. After several hours in the ER, the doctor told me that it appeared I may be having trouble with my gallbladder and I would need to consult with a surgeon. I didn't have insurance, so this ended up being a daunting task. I would visit the ER several more times over the next few months as I got sicker and sicker until ER bloodwork results led me to be hospitalized in January of 2016. They ran some tests and I was scheduled for surgery to remove my gallbladder. I came out of surgery and was so excited to eat without getting sick...for about 36 hours. As I was being discharged, I got sick after lunch and this would kick off a grueling 5 weeks of violent illness and nearly daily ER visits.
When bloodwork at the ER again revealed that my electrolytes had crashed, I was admitted again in March 2016. After days of testing, a CT scan finally revealed a full blockage in my small intestine. I had surgery a day or two later to remove it and again was so excited to finally be able to eat without consequence. Two days later, all my doctors came in for their rounds one by one and asked in passing if I had been told the results of my pathology report. I hadn't. My fourth, and final, doctor came in late in the afternoon and mentioned this again. I told him I hadn't been told and that all the other doctors had asked, but not said anything. I could tell he didn't want to tell me, but he gathered himself and told me that the blockage had been cancer. I was shocked. My family was shocked. After a few more days with some neurological complications, I went home. I was very weak and often had difficulty standing and walking for a few weeks. During that time, I saw my oncologist for the first time and he told me I would need to go through six months of chemotherapy and then follow ups for five years. I was strong enough and started chemotherapy in May 2016. I had the usual chemo side effects, but mostly did very well and finished on time in October 2016. During chemo, I had blood clots to the lungs twice. The first (May 2016) resulted in a hospital stay, but was pretty straightforward. The second time (September 2016) was what they call a double massive pulmonary embolism and sent me into a squad, the ER, frightening interventional therapy, and the ICU, before finally being discharged a few days later.
One scan after another came back clear after my chemo had ended. In March 2017, my hubby came home from work with chest pain. We rushed him to the ER and within 24 hours he was having a massive open heart surgery. It all just happened so fast! He was in the hospital a total of 12 days and had months of rehab. I had another clean scan in April 2017. We were so grateful to still be alive and together after all we had been through! At his follow up after surgery we knew that he would not be able to return to his job, however, and unemployment and all of its consequences began. He scoured everywhere for jobs, applied for disability, and we held on for dear life. It was time for another scan at the beginning of November 2017 and I went, so very business as usual knowing everything was fine. I had been putting on a little weight...a little overindulgence or menopause coming soon maybe?
I got a call later in the day from the nurse at my oncologist's office. They are always so good about letting me know that all's clear. She didn't sound like her perky self though and told me the CT scan had revealed a 15 cm mass on each of my ovaries. She told me to not let my mind go there and made me an appointment with the surgeon for the following week. I had surgery the day before Thanksgiving and went home a few days later after the surgeon successfully removed the masses, my ovaries, and my fallopian tubes. The following Thursday, my surgeon called and explained that the cancer that created the masses was the same cancer I had before and that the masses were considered a distant metastasis which meant that I had stage 4 cancer. I thanked him for the information and promptly broke down and cried. I would have complications a few days later when my incision got infected and spent another few days in the hospital. I was placed on home health and that lasted until the middle of January 2018.
Just before Christmas, I saw my oncologist. He explained that the way the masses had grown on top of the ovaries meant I likely had microscopic cancer cells all over the surface of my abdomen and they could grow into visible tumors later require treatment. He told me that because of the way the abdomen is designed, outside influences and things carried in the blood did not reach the surface of the abdominal organs very well. That meant that IV chemotherapy and radiation therapy had little chance of curing my cancer. At best it could buy me some time and keep me comfortable longer. My prognosis was very, very poor. He told me about a surgical procedure that was new to the area and very dangerous, but that held the possibility of a cure or well extended life. Only one doctor in the entire region did it and helped get me a consult with him. The first week of January 2018, I had that appointment and he explained the procedure to me. He ordered a huge work up to determine if I even qualified for the surgery including bloodwork, updated CT scans, an endoscopy, and a colonoscopy. I finished all the testing and had my second consult February 1. I qualify for the surgery, so we began preparations with some vaccines I will need if he has to remove my spleen (he doesn't think he will, but it's too late once surgery is under way) and I should have a date soon. The surgery will involve removing any visible tumors in or on the abdominal organs or walls, infusing hot chemotherapy directly into my abdomen, draining it, and rinsing it out. The surgery will take between 6 and 14 hours. There will be drains, a gastric tube, a feeding tube, and possibly blood transfusions. I will be in the ICU AT LEAST one night and in the hospital in total an average of 7-14 days. It will take about 6 months to get back to normal. At about 4-6 weeks, I will either start IV chemotherapy or participate in a clinical trial of an immunotherapy treatment. I still haven't decided, but it is exciting to have options. I will update this when I have more information.
I've come this far and every day is so very precious. I know I have a lot of hard things to endure ahead of me, but I have God, my family, and my friends to see me through. I will continue to tell my story here and I will share thoughts and updates often. This will be the main source of news and hopefully help everyone coordinate together so everything gets taken care of. I appreciate everyone who drops a line of encouragement, stops in for a visit, sends a little something, or helps out in the many ways that will be needed over the next year at least. Love to all!
