Please take the time to see the full original post on Cervivor here: cervivor.org/dear-santa/
I wanted to take a moment to share a post that was featured on Cervivor just before Christmas this year with you all. I wrote a letter to Santa with my wishes for this Christmas. I hope that you enjoy it and that it helps you all to get a better understanding of what is happening in my life.
Please take the time to see the full original post on Cervivor here: cervivor.org/dear-santa/
I really truly appreciate people asking me how I am doing, however, sometimes I just don't know how to answer. I feel that when I tell them that I am fine then they simply don't believe that is true. However, my idea of fine is probably completely different from yours. My current idea of fine is certainly different than it was six years ago aka before cancer.
If I tell you I'm fine what that means is that I am fine, for my life. Unless I am sitting in a hospital bed this is likely the answer you are going to get from me, I'm fine. If I am sitting in the hospital bed then something is wrong. In my experience thus far that is typically directly related to a fever, infection, pain, or a combination of the three. So, know, if I am sitting in the hospital I am not fine.
There are daily things that I go through which you might not consider "fine" if you were going through them, and that is okay. This doesn't make me stronger than you, it just means it is the situation I have found myself in. I assume when you ask me how I am doing you don't really care if I have been constipated for weeks on end or if my laxatives finally kicked in and I've had diarrhea for days. I am sure they don't want to hear that if I forget to go to the bathroom for too long I have to worry about my bladder leaking. I figure people don't care to know that my leg is hurting, again, especially considering the fact that I have medication to help with that. I also take for granted that people know that I am tired, hell I've been tired for years now and I don't think that is going to change.
There are a lot of things that people don't see which are a reality for me. If I don't sleep at least twelve hours I am not going to be a very pleasant person, you might not see the unpleasant part of me but it does come out (usually in time for me to get home and lay back down). There is a theory, The Spoon Theory created by Christine Miserandino, for a full story about the theory please check out her website, here. The theory is simply a story that is used to explain what it is like to live with a chronic illness, in my case living life with cancer. The spoon theory uses a metaphor of spoons to turn energy into a measurable concept. As person living with cancer it is like I only have a certain number of spoons in my possession each day, and every small action can result in a lost spoon. Once I lose a spoon, it is very hard to get that back until after a full night’s sleep. Simple actions like getting out of bed, taking a shower, walking, and driving can require enormous amounts of energy. When you look at me my cancer could be visible or invisible.
When you see me doing things and making amazing memories with my family, friends, and/or by myself that doesn't mean that I am not experiencing these daily things that I mentioned. It does, however, mean that I am enjoying myself. I am prioritizing what I think is important and putting my energy into it. It means I am fine and I will keep going until I am not fine anymore.
I haven't posted since October. I need to get it together! This blog is such a special place for me and it helps me so much. It is hard to believe I have been putting off writing for this long. I always have great plans, great topics, things I know I want to write about and then time just slips away from me.
I need to get outside my head more. I need to remember that the order of things doesn't always have to be perfect. If I am ready to write I need to give myself permission to just sit down and write. Not to worry if I forgot about something else I had planned to write about first. Just write.
Well, since it is December, maybe I should give a general update on life. I seem to have done a lot of travel this year, I want to recap the last six months of it. Some spur of the moment and some well planned out; all amazing and nurturing.
As I think through my adventures this year I can pinpoint things that I learned on each adventure. As I think back over the last six months my travel started with our amazing Cervivor School in Florida; this was a labor of love with the rest of the leadership team for Cervivor. As it all came together I learned things about myself in addition to some amazing information from our speakers.
As Cervivor School wrapped up my friend Mallory joined me in Florida for a weeklong adventure of fun and relaxation through Florida and ending in Savannah, Georgia. I learned one really silly thing there: I MUST have rolled ice cream whenever I can find it.
I traveled to Boston to say goodbye to an amazing Cervivor sister at her memorial service and while awake that night in my hotel found that I had lost another Cervivor sister. I learned different things from these women. Through both of them I learned that cancer doesn't really care what your plans are. Jillian taught me to keep going and remember quality of life is important; life is important. Lisa taught me that no matter how prepared we say we are for the end, no one can truly be prepared.
I traveled to New Jersey and I was able to go to Advaxis and speak on a panel about clinical trials. I learned that there is a lot of work that needs to be done to raise awareness about clinical trials. I learned that clinical trials don't have to be a last resort.
I headed out to Wyoming for my first time as a House Mom for First Descents. I learned just now when I went to link to a previous blog post that I never wrote about this. Time is slipping through my hands. Being a House Mom was amazing, it was great to see a new group of FD family members find their way on and off the water.
I was able to go to Hawaii with Project Koru for another type of young adult cancer organization experience. While in Maui we were able to learn to surf while also having a lot of time dedicated to general wellness throughout the week. Snorkeling and pie were also top of the list items for many of us throughout the week.
My family and I went to Washington DC for a great adventure. I was invited to attend a Capital Hill Fly In Day in which we went and spoke to legislatures about the need for funding for clinical trials in the area of gynecologic oncology. While I was doing that JR and Wylee got to adventure around DC and even tour the White House, something I have never personally done. While we were there we all also participated in a 5k Race to End Women's Cancer.
Speaking of races, the week before that we went as a family to Muncie, IN. Chirp Chirp! While there we took part in a 5k fundraiser for Camp Kesem and then the next day we went to a reunion day for Wylee's Camp K. It was great to see him flourish with the camp leaders. He is ready for next year!
Over fall break our family was heading out for our first ever cruise, our first time out of the country, and before we got to the cruise our first time on white water as a family. Little did I know that JR had been secretly coordinating getting some of my amazing FD family on the white water with us. It was a great day on the water with my FD family: Tripps, Hugo, Jam, and other family members too: Shutter (JR's river friend extodinaire), RightEye (JR), Coyote (Wylee), and Wifey (Jam's wife). The cruise was quite an experience. We were able to take Wylee to Cozumel, Costa Maya, Belize, and Honduras for great family time. We took him snorkeling (for my first time ever) over the second largest reef in the world and swimming with nurse sharks and stingrays while we were in Belize. He got to have monkeys sit on him and hold a sloth while we were in Honduras and he got to have some adventures in our two ports in Mexico as well.
Over Thanksgiving JR planned a surprise trip to Jamaica where we were able to check some more items off of my Living Life List! We swam in luminescent waters and then went on an experience I didn't even know was possible. We climbed a waterfall at Dunn's River. It was the most amazing experience I've ever had.
When we got back from this spur of the moment trip I headed out the next weekend for some time with more FD family. I had a date planned with Hugo and we decided to head to Austin, TX. Two of the people from my Wyoming trip joined us there: Marathon and Blue Dot. We were able to stay with an FDer from Hugo's FD1 - Wiggles and we were able to meet Cherry! I got to see cousin Bonnie and little Dora for lunch too. It was a full weekend!
I think that it all the travel from the last six months. As you can see I have been keeping myself busy!
I am going to try and be better about doing my updates here. I am going to try to let go of the thought that it all needs to happen in order and give myself the freedom to just write.
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.