Today I am pleased to share with you a video of my cervical cancer story. Through a series of people I was connected with Roche. Roche was looking for a cervical cancer patient or survivor to come and tell her story. This story is going to be used to help advocate for women's wellness and the use of the HPV test which can identify if a woman is carrying the strands of HPV which are known to cause cervical cancer: 16 and 18. This test will be an integral piece in woman's health! You may have forgotten, although I'd had several abnormal paps leading to my diagnosis the pap I had when the cancer was found was actually a normal pap. Let that sink in for a minute, I had CANCER on my cervix and the pap came back normal. This test could have caught the HPV and told me I had those high risk strands. If we knew sooner which strands I had, my doctor could have taken the time to educate me on what to look for. I could have taken the time to education myself about what to look for. Education and knowledge are power!
This week has been a whirlwind. It has been challenging on two fronts. First, I was suppose to get my 2nd round of Avastin this week. Avastin is the medication, similar to chemo, which I am taking every three weeks to stop the five spots of cancer we have found in my body from growing and to stop any new spots from developing. On Monday I went in for my blood and urine draws to send to the lab. On Tuesday I received a phone call that I was good to go on Wednesday and could get my Avastin. Great news! Anticipated news! There are conditions which can lead to me not getting Avastin, such as my blood pressure going too high or the protein in my urine being too high, and I'm sure a host of other reasons that I don't even know about. On Wednesday I received a call from the nurse canceling my Avastin and asking that I call her back for more information. It ends up, the protein in my urine is too high and I can't get my 2nd treatment as scheduled. Talk about scary! This medication is suppose to be what is stopping my cancer from growing. If I can't get the medicine, what is stopping my cancer from growing? Now, I have to do a 24 hour urine catch and they have to do another test to determine if I can get back on course with my Avastin. More waiting.
Secondly, this weekend is an event I have been waiting to come for months: Cervivor School. Cervivor School is a fantastic event where cervical cancer survivors get together with a purpose. Cervivor is an organization which focuses on advocacy and education for cervical cancer. I have been looking forward to this for months. When I got home from work Wednesday it seemed like the world was crashing in around me. I had just found out no Avastin. I am having swelling in my abdomen which my nurse suggested could potentially be a bowel obstruction and gave me instructions for what to look for and what signs meant and immediate trip to the ER, no matter where I am (thankfully I don't have any additional symptoms).. Then, at 7:00 when my family got home I took my temperature and it was at 102.8! What? This can't be happening, is exactly how I felt. I know if I went to the ER it is a five day stay, it is always a five day stay. I quickly got my oncologist on the phone and explained the situation, his response, don't get on the plane. I told him I wanted to try and break the fever with ibuprofen and talk to my husband. Fast forward to 2:00 am, seven hours after I took my ibuprofen, and my fever was still not back. I called the oncologist and he agreed I could go on my trip. He said "maybe the fever was a fluke since it hasn't returned". I am having a fabulous, educational, and empowering time here at Cervivor School. Unfortunately my fever does spike everyday. it is being managed with ibuprofen but I fear a hospital trip may be in my future when I land back in Indianapolis on Sunday.
In August I decided that I needed to get some more support for my son, Wylee. He is six years old and has been here through my cancer battle for half of his life. There is a Cancer Support Center just a few blocks from my house. I checked into the programming there during my 1st recurrence but I didn't follow through with going to any support groups. When I was diagnosed again with my 2nd recurrence I decided it was time to get myself, and my family, some more support. Four weeks ago I started attending a weekly women's cancer support group. The first three times it was myself, the leader, and one other individual. It was nice to be able to discuss our stories and find similarities although we each have a different type of cancer and a different story it was a good experience. On my fourth visit I had a different experience. It was "Supper Club" night, this happens every 2nd Tuesday and it is a great time. There is dinner provided as well as additional support groups. This time I met with six other women and my family had the opportunity to go to support groups. My husband went to the friends and family group and my son went to the kids group. It was nice because they were able to meet others going through the same things our family is going through. Wylee had a great time and is ready to go back. It is unfortunate his group is only once per month. He was able to "draw my cancer" as a monster and make a "worry bag" to put his worries in. He was also able to connect with other children going through the same types of things.
I find it amazing how the story of my cancer journey can overlap with the stories of women who all had different types of cancer. I look forward to the next Supper Club night because it helps to make the support group a bigger group. I also look forward to hopefully meeting these wonderful women again and digging deeper into our cancer stories. It seems like the time we have together is spend telling our stories so we don't get time to talk about specific topics. I'm hoping to be able to get a little deeper at our next meeting.
I am looking forward to attending Cervivor School in San Diego in a few weeks with a group of cervical cancer survivors. I am sure the fellowship I find there will be unparalleled.
Yesterday we met with my gynecologic oncologist to discuss my case and the new developments. As you might remember on my most recent PET scan they saw new spots: one on my right hip, two in my pelvis, one on my ovary, and one adjacent to the one removed via surgery on my 30th birthday this year. The meeting did not go as I had planned in my head. I expected we would go into this appointment and hear a plan of attack. This was sort of the case, they did have a plan, however it isn't an aggressive attack plan.
We are planning to start Avastin, I opted to start ASAP which means I begin tomorrow morning. Now, most of you out there not in "Cancerland" have no idea what the difference between Avastin and chemo is. Hell, I have lived in Cancerland for a few years now and I didn't realize they were different but my doctor explained they are in fact different. In a previous treatment I had Avastin in combination with an aggressive chemo regimen. This time I will only have Avastin. You see, chemo attacks fast-growing cells, like cancer cells but doesn't differentiate between types of cells. Avastin works differently than chemo.
For cervical cancer, Avastin is typically used with chemotherapy to hit the cancer from another angle. As I said, we've already gone that route so now we are trying Avastin alone. Avastin is a tumor-starving (anti-angiogenic) therapy. The purpose of Avastin is to prevent the growth of new blood vessels. This includes normal blood vessels and blood vessels that feed tumors. The picture below helped me really see what was meant.
Now, what does that mean for my cancer? Where will I be in six months? Two years? Twenty years? Well, in short, I will be living life with cancer. If the Avastin does it job the existing cancer cells I have will be contained. The goal is to maintain the level of cancer which is in my body. Studies have shown that Avastin can do this. My concern was what if it progresses and I don't see the symptoms. My doctor assured me I would be under a microscope basically and we will do a PET scan every few months to ensure that the Avastin is doing its job by keeping my cancer in check.
This wasn't a choice which was made lightly. There was a lot of thought which went into this plan. My case was discussed between all my specialists and we opted for this plan to help preserve my quality of life. You might remember last year when I had aggressive chemo. I was in treatment one full day and then typically a week and a half later I was in the hospital for a week. What most of you never saw was that I couldn't keep up with my son. I was too sick to care if I ate. I was tired, sleeping 16+ hours per day. All of this while trying to be a mother, wife, friend, and teacher.
After much deliberation my doctor brought this plan to me to help me improve my quality of life. The Avastin has minimal side effects and only takes away a small part of my day every three weeks. I don't have any external symptoms of the cancer so all my symptoms have been side effects of treatment. My body needs a break.
It has taken me some time to process the thought of living my life with cancer. It is hard to grasp that we are not aggressively attacking this. My doctor assured me we do have future options if the Avastin doesn't work but for now, here I am, living my life with cancer and no end in sight.
I am grateful for all my friends and family and the support. Looking forward to a long life, even if it has to be with cancer.
Erica is a 32 year old cervical cancer advocate who is out living cancer for the third time. When she isn’t advocating for cervical cancer and HPV awareness as a Cervivor Ambassador, she previously oversaw the STEM program at the school where she was an educator; she now helps coordinate the robotics program. Erica enjoys spending time with her husband and son in their Indianapolis neighborhood, as well as pursuing new and adventurous hobbies. She can most recently be found fawning over kayaks and daydreaming of returning to whitewater kayaking with First Descents, an organization for young adults impacted by cancer.