It all began in June of 2017 with an irregular period (I’ll spare you the details). An ultrasound at the end of June revealed that I had Fibroids on my uterus and polyps in my uterus. My period in July caused me to loose a fair amount of blood that I questioned the reasonableness to loose that amount of blood and have no other physical repercussions. Well, after seven days of bleeding, I started to feel dizzy and light-headed. So, Jeremy and I made a trip to the ER. This resulted in my being official diagnosed as anemic. I was put on birth control pills to control the bleeding and iron for anemia.
A month to the day later, I was seven days into another period. Jeremy and I were cooking dinner when all of a sudden I had excruciating abdominal pain and felt faint. Jeremy says I went as white as ghost. He rushed me to the ER, again. This time I was hospitalized and given four blood transfusions over two nights. My hemoglobin level was around a 5 and my hematocrit was around 20%. Normal ranges for females is 12.0-15.5 for hemoglobin and 34.9-44.5% for hematocrit. Needless to say, I was in the danger zone. After this visit my medications were adjusted in such a way that I didn’t experience any more normal periods. Instead, I had constant spotting and light bleeding with occasional clotting. I felt like the woman in the bible that was subject to bleeding for twelve years.
In a follow-up appointment with my OB-GYN, we discussed my options for managing my fibroids. All options but one had a high probability of not working. This option was to have a hysterectomy. So, we moved forward with the hysterectomy. In preparation for it, my OB-GYN wanted to do a DNC and biopsy the polyps in my uterus for precancerous/cancerous indicators. If precancerous/cancerous cells were found, special precautions would have been made during the hysterectomy. None were found so a normal procedure was scheduled. In the months and days leading up to my hysterectomy, I continued to experience lower abdominal pains, light bleeding and clotting.
Now that you have a picture of what I was going through here is a timeline of the events that followed.
October 10, 2017 – I had my hysterectomy.
October 22, 2017 – OB-GYN makes a house call to tell me that they found a sarcoma tumor in the fibroid attached to the outside of my uterus. I consider it a work of God that my only options was a hysterectomy. Otherwise the tumor would not have been found because the DNC in August was only of the inside of my uterus. Remember, no precancerous/cancerous indicators were found.
October 23, 2017 – Meet with Oncologist in Tacoma to learn about the Sarcoma tumor and what our next steps would be. Brief lesson on Sarcoma cancers – they are very rare. Each one is different by where it originates and its genetic make up. It can travel through the blood stream. They present differently in each person and have different treatment options. To analogize it in educational terms, I have the autism of cancers. (I couldn’t help it. I am a former Special education teacher.)
October 31, 2017 – Met with the Sarcoma clinic at the Seattle Cancer Care Alliance. They had a VERY aggressive approach with no bed side manner that left a bad taste in my mouth. They wanted to talk treatment options before even confirming what type of Sarcoma cancer I had and if it had spread. At this appointment I learned that sarcoma cancer have a 50% chance of returning in the first five years. Thus, their reason for pushing for chemotherapy. I did have a CT scan done there which came back negative. The cancer had not spread. Praise God!
November 6, 2017 – Met with Oncologist in Tacoma, again. Liked her way better than the Sarcoma clinic. She was very educational in her explanation of my cancer and had great bed side manner. Since Sarcoma cancers travel through the blood stream and have the potential to go to the head, my Tacoma Oncologist want a PET scan done. The CT scan was only of my chest, abdomen and pelvic. A PET scan takes imaging of your whole body, head to toe.
November 27, 2017 – PET scan completed.
November 29, 2017 – Met with NEW oncologist for results of PET scan. It came back negative. Meaning, no signs that the cancer had spread to ANY part of my body. The oncologist gave me two options in moving forward, start chemo or be on observation. My thought, why would I want to be on chemotherapy if there are no signs of cancer. I understand the return rate of sarcoma cancers, but still! So, I choose to be on observation. This meant that I would have three month check-ins with imaging (CT Scans or PET scan) every six months. (New oncologist – In the middle of all this my work changed their medical insurance companies causing me to have to change my in-network providers. What a headache!)
February 28, 2018 – Three month check-up. All looked good and I wasn’t having any other health concerns.
May 29, 2018 – Time for my first six month imaging, a CT scan was done.
May 30, 2018 – Six month check-up appointment. I had started coughing two weeks prior to the appointment. I didn’t have any other symptoms like nose congestion or runny nose. So, I didn’t think anything of it and was waiting until my sixth month check-up to discuss it with my oncologist. When he entered the room for my check-up I was having a coughing attack. He went straight to the news. “The CT scan showed numerous nodules on your lungs. The cancer has metastasized to your lungs. We need to start chemo.” Not what I was prepared to hear sitting there by myself. The appointment ended with me talking to the Care Coordinator about setting up my Chemotherapy.
There you go. Now you are all caught up.