The first day: each time I head off to a young adult cancer adventure I'm looking forward to what I'm going to take away from the camp that is different from what I've taken away from previous camps. I don't think it's fair to judge camps, as they all have varied experience, facilities, etc. I just really go into the week thinking "how is this week going to impact me in a unique way?" I can already tell this week is going to be special.
This adventure is happening in Squaw Valley and it is going to be amazing!
I can say, arrival day, day one, did not disappoint. We were picked up by Katie and once the three of us she was picking up were packed up and ready one of us mentioned being hungry. Since we were heading into California it was determined we needed to stop at In and out burger, a place not available at home. Julia lives in California, but is from Organ, so she'd had it before. Janice is from Kentucky but now from Florida and we hadn't ever had it before. So, Katie made it happen. The burger was tasty but the fries I could've done without.
Next we heading off to get outfitted. Ski boots, skis, poles, and helmets for all. There was about ten inches of snow yesterday so everyone at the shop was abuzz about their time on the slopes early Monday morning. It just added to the energy and excitement.
On our ride to the amazing cabin I asked Katie how her and her sisters got involved in this space (two sisters run the foundation). I wasn't expecting the answer I got. Her family grew up spending weekends on the slopes. At the age of 32 their brother, Jamie, was diagnosed with cancer. He had been living in Truckee spending days on the slopes and working at the outfitter shop.
One of the key terms used in skiing is "Send It" it can mean: go big, do it, you've got this, etc. Through much name bouncing Send It Project was born. Jamie lived for the mountains, lived to Send It.
It was Jamie who started the foundation, yet, at the age of 35 he passed away and didn't get to see the first camp in action.
Once we all arrived it was great. There are seven participants and we are all females. Our ages and cancer experiences vary. The cabin that we are staying at is amazing with great snowy views. We all did a little sit down and meet each other and then we dug into an amazing meal made by chef Tommy. He made rice, chicken curry, potatoes, salad, and bread (I LOVE to eat bread).
After dinner we all just hung around together and chatted. This morning I woke up early and came down to start on some blogging. I think this is lining up to be an amazing week.
I am so thankful to know the connection of all the staff members to this young adult cancer space and I can't get ready to get out and Send It on the slopes today!
Why should I care?
Stop right now. Look around you. Do you have five people around you? If not picture you and four friends. Of this group of five individuals four of you will contract at least one strand of HPV during your life. That is right. Eighty percent of you will contract HPV. You could ask those same individuals you are around if they know what HPV is and I’d venture to say no one really knows; they might remember something about a shot, they might have heard something about it jokingly in a television show or movie, but can they describe what it is and why it is an issue? Mostly likely not.
What is it?
So, why don’t we start there and learn about HPV? HPV stands for Human Papillomavirus. There are over 150 strands of HPV and some of them are considered high risk strands. The high risk strands are considered high risk due to the direct link between these strands and cancers in men and women. HPV-related cancers include cervical, anal, oropharyngeal/oral cancers, penile, vaginal, and vulvar cancers. There are additional high risk strands which are linked to genital warts; all cases of genital warts are caused by HPV.
How does it spread?
HPV is spread through intimate skin-to-skin contact. That’s right. You don’t even have to have intercourse to spread HPV. Think about those times you have been with a partner and not had penetrative sex, not “added to your number” but you had a lot of intimate touching. You could have contracted HPV during that interaction. HPV can also be spread during vaginal, anal, and oral sex.
How do I know if I have HPV?
There are typically no symptoms of HPV contraction, this is why it is key for males and females to go for annual doctor visits. All women should be visiting a doctor annually for a wellness exam (including a pelvic exam); starting at the age of 21 the current guidelines indicate that women should start having a Pap test. The Pap test will determine if there are any abnormalities on the cervix, if there are abnormalities the same sample can be sent for an HPV test to determine if the woman has HPV. There are guidelines for testing that the doctors should follow. There is no screening available for men for HPV.
How do I prevent contracting HPV?
There are multiple ways to help reduce your risk of contracting HPV, one way is to get the HPV vaccine. There is currently a vaccine available up to the age of 26 which protects against 9 high risk strands 16, 18, 6, 11, 31, 33, 45, 52, and 58. These are the strands which are linked directly to cancer risks and genital warts. Even if you have potentially already been exposed to HPV it is important to get the HPV vaccine if you are within the age that it is available because it can protect you against additional strands you have not contracted. If you are above the age of 15 then the HPV vaccine is a series of shots and you must receive three shots. You can also utilize typical safe sex habits as condoms can help prevent spread of HPV, though it is not 100% effective because HPV lives on areas of the genitals which are not covered by condoms.
Where can I get more information?
If you are interesting in finding more information here are a few great resources for you:
As we got into the Chris Young section of the concert it was pretty late and Wylee was super tired. He started out strong standing on the chair as I sat in front of him so his chair didn't flip, as the songs went on he kneeled behind me, then eventually he sat down, then I felt him leaning his head on me and snapped a picture. He had fallen asleep in the concert! It was equally adorable and confusing. I don't think I could sleep in that setting!
On the way home from the concert Wylee fell asleep. I kept it on our country music Pandora station and a song came on that I used to sing as a kid: Holes in the Floor of Heaven by Steve Wariner. I know some of you will think it is odd that I was singing along and listening to this song since I am not religious but a lot of the songs I have always listened to have things related to religion; many many songs do. So, as I am listening to this song I am thinking how I just had this epic experience of taking my son to his first concert and I'm singing along and really trying to take in the words to the song. I am going to include the lyrics below, but, the part that really hit me is when the kid is getting married at 23 and it starts raining; when it starts to rain they explain it is okay to not be sad because the parent is watching over the wedding from heaven and the dears are coming down in the form of rain.
It just hit me as I was driving and I started to cry. You never know when the emotion is going to hit you, the reminder that I won't be here forever and I won't be able to see all of the special moments in my son's life. I hope he remembers that everything will be okay in the end. Now, I think it is time to get started on more letters for Wylee's special times in his life. I want him to have letters written by me that he can open up as special events happen; if I am here still we can open them together, if I'm not then he will have them.
One day shy of eight years old,
Today has been a writing day for me, and it feels great!
I worked on editing and publishing a blog post for Cervivor, it is Cervical Cancer Awareness Month you know! #CCAM I worked on a piece about my story that someone is wanting to use in a project. I worked on finalizing the book Wylee and I have written. I also worked on my journal.
I had the idea yesterday while I was in treatment to start a group that focuses on Surviving & Journaling. At first I thought, just cancer survivors only, then I realized we are all surviving something. Many of us need the outlet of writing and it gets lost in our year. It gets lost in my time also I find.
So, I started the group yesterday. The group goal is a entry per week, so 52 entries. I have a personal goal of many more than that. Today I picked the topic that will be our first entry goal, it is going to be released in the group on Friday. I wrote multiple entries in my journal about the topic I am using. I wanted to try out a variety of types of journaling and you know what, I learned something new about myself in each of my entries even though they were based off of the same topic. I have so far used traditional journaling, letter writing (this time to Wylee), and bullet point journaling. I am hoping to do another entry about this topic as well. If you are interested in joining here you go!
I think there is something special about writing, although I do most of my writing on a computer it has been cathartic to do some pen to paper writing. Writing that doesn't have to be perfect or go in the perfect order. I did however want to share what I wrote about yesterday. It is a bit of a health update I had been avoiding.
With that update, please know that we are following the protocols and will be doing a follow up scan at the end of this month then we will talk about options moving forward. I am still on treatment and overall it is working. The rest of my cancerous areas are not getting worse when you look at them as a whole.
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.
I never realized how much the old saying "don't judge a book by its cover" was true for cancer as well. You don't have to "look sick" to be sick.
A few weeks ago I was in the hospital for a few days. I was there due to pain I wasn't able to get under control. The pain was, and continues to be, in my right upper leg on the outside of it. I have this pain daily, the management I am still working on though. I was released from the hospital on Friday night so I could make it to a wedding I was going to be in on that Saturday. I was released without a real reason for the pain and given options for pain management.
On the next morning I headed out for a day full of wedding activities and I remember saying to myself and aloud to others when they would talk about it that today wasn't about me or cancer, today there was no cancer. Today was a wedding day for my friends. It was a non-cancer day. However, just wishing away cancer doesn't make it so.
While I was refusing to let it be a "cancer day" I was also not managing my pain the way I should of. I knew we would be having drinks throughout the day. I didn't want my pain management medications to interact with the mimosa or two so I wasn't taking them the way I should have. That resulted in, what I knew would happen, me being in extreme pain when the evening rolled around. Try as I may my friend's amazing wedding day was still a "cancer day" for me. It was a pretty enjoyable one though!
This brings me back to the fact that you don't have to look sick to be sick. The wedding pictures were great. I loved seeing all the pictures taken throughout the day and evening. Then I found a picture of JR and myself. Honestly, it is a great picture. We accidentally had matched (Jackie made this amazing necklace for me which happened to match JR's tie for the event) and I feel like we look pretty badass. When I saw the picture I had two thoughts - 1. We look badass; 2. Wow, I honestly wanted to cut my own leg off if it would remove the pain I was having at that moment.
I sent this picture to friends and just said "this is the epitome of the idea that you don't have to look sick to be sick."
Next time you are wondering why someone is boarding a plane with the disabled group, parking in a handicap spot, or just struggling to keep up I hope that you remember. Think of this post, this picture and know you don't have to look sick to be sick.
Five years ago today I was in the stirrups in New Albany seeing Dr. Baldwin. Five years ago today he was taking a biopsy of a tumor on my cervix. Five years ago today I asked "what could it be other than cancer?" Five years ago he told me, "you have cancer, this is just a formality."
Today I have met the five year statistic. I am part of the 80% of women who are diagnosed with stage 1b2 cervical cancer who will live at least five years. I am a part of the successful statistic. This survival rate statistic is explained by the American Cancer Society: Statistics on the outlook for a certain type of cancer are often given as 5-year survival rates. The 5-year survival rate is the percentage of people who live at least 5 years after being diagnosed with cancer.
However, I don't feel like a success story. I thought that the 80% who make it to five years would be healthy, cancer free, not still dealing with cancer. This is not what I realized this statistic could mean. I didn't realize you could be a part of the the positive side of the statistic but still have cancer.
Today, I am going to work on wrapping my head around the statistic in a different light. I am going to celebrate that I am still here after five years. I cannot imagine what my family's lives would be like without me here for these five years. My son, at 8 years old, I cannot imagine what it would be like for him if I didn't make it these five years.
During the upcoming week my family will be having the celebration of a lifetime together. I am going to embrace the five years we've had together since I was diagnosed and hope that we can continue to keep my cancer maintained for many years to come.
Today, please take a moment to read my story: www.cervivor.org/erica and do something nice for someone. If you are in the drive through buy the person behind you their meal, help someone who looks lost, just do something nice. Tell them you are doing it in honor of my five year cancerversary, even with cancer still being a part of me I am alive. That alone is something to celebrate!
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.