Here at Lacuna Loft, we are always looking for new ways to add great, informative content that is relevant to your life! (If you have more ideas, we’d love to hear them! Email info(at)lacunaloft(dot)com) Today we are introducing a new feature, personal interviews! Are you a cancer survivor, caregiver, or do you have a long term illness? Interested in being interviewed by Lacuna Loft? Let us know! We’d love to hear from you!
Today Mallory, LL’s founder, talks with a cancer survivor, Erin. She discusses her illness, her emotional and physical health and well being, and so much more!
Mallory: When were you diagnosed?
Erin: In late July of 2008 my boyfriend at the time (now ex) told me one day that I felt “swollen” the last time we had had sex. I kept thinking he meant that I felt swollen as in having a yeast infection – which I knew I didn’t have – so I let it go and told him he was nuts. In the shower that evening, I decided to check myself. To my horror, I felt a golf ball sized hard mass inside me. I made an emergency trip to the gyno the next morning where I was informed that it was most likely a Bartholin’s Cyst (being common for women to get clogged Bartholin Glands) and put on medication to shrink it. A month later, I was checked again and the mass had gotten larger. I was told I could let it go and live with it since it wasn’t painful or I could have the cyst drained. Luckily, I decided I didn’t want something that large in my body and scheduled to have the cyst drained at a local hospital in August of 2008. A 15 minute procedure turned into a 2 hour tumor extraction of a mass a little smaller then a baseball. Again, I was informed that this was most likely a benign tumor since it was completely circular in appearance and was literally just “scooped” out. After two weeks of waiting and two hospitals Pathology teams later, on September 8th, 2008 I was informed I had a rare Cancer – Vaginal Leiomyosarcoma.
M: How did you feel when you were first diagnosed (physically, mentally, emotionally)?
E: I was 23. I was sitting on the couch watching TV with my father and the house phone rang. He didn’t say much but upon hanging up, immediately went outside. I really didn’t think anything of it but when he came back in the house his face was red and he was carrying a paper towel. I remember wondering where he had gotten the paper towel since he was outside. Less than 10 minutes later, my mother arrived (my parents are divorced) unannounced. I already knew this wasn’t good but never expected her to tell me they had found Cancer cells. I don’t remember anything from the conversation other than that. I cried. I locked myself in the bathroom and sat on the floor crying as I called my best friends and my boyfriend. My girlfriends cried with me and my boyfriend asked if I was kidding. I felt as though I was hit by a train.
M: Who/what/where did you turn to?
E: My mom stayed at the house for a while after the news was broke and a few of my closest friends came over that night just to hang out as did my boyfriend. The only people I ever knew to have Cancer had died many years prior to this occurrence so I felt lost. In the weeks that followed I went online to look up my disease but it was probably the worst thing I could have done. Every single thing I read told me I was going to die. Probably a year or so after I was diagnosed, I came across the American Cancer Society and their annual Relay For Life fundraisers. I found one in my area and decided to be a chairperson. This helped immensely because I felt as though I was making a difference. I also got to meet other survivors – one in particular who was extremely supportive and whom I’m still friends with today. The only woman I was able to find online who had Vaginal Leiomyosarcoma emailed with me a few times and that helped as well. Other than that, my mother and father have been amazingly supportive – even during times that I completely pushed them away. My friends are the best ones I could ask for and my ex-boyfriend helped me through those first few years with an incredible amount of strength. I now live with my current boyfriend who is there whenever I need a shoulder to cry on or an ear to listen.
M: What (if any) additional outlets could you have used/turned to that you do not feel you had at the time?
E: I still to this day have never met anyone with my disease that is/was my age. I think it would’ve helped me tremendously if I could have been put in touch with or found someone that went through or was going through what I did – at the age I went through it. Of course there have been others with Leiomyosarcoma – but having it vaginally is extremely rare. The woman I found online was in her late 30’s when she was diagnosed. Although that is absolutely not “old”, it is still a completely different stage of one’s life then being 23. I still felt like a child at that age. I didn’t know what I was going to have to be subjected to that I would’ve liked to have heard from someone who was sharing my grief and misery. The countless physical exams, needles, tests, humility, pain and emotional trauma would’ve been a little easier to bear had I had someone to share it with – who was going through the same thing.
M: What kinds of things did you do to distract yourself when you were going through treatments (either at home or at the hospital… Or both)?
E: I always had guilty pleasure reading material (gossip magazines, books that didn’t require a lot of concentration, etc.). I ALWAYS had my ipod with my fav music so that I could escape into my own world. In fact, during my 1st lung surgery I was soo upset and nervous about the epidural (I have a phobia of needles…) that they gave me a bunch of meds prior to the surgery so I really have no recollection of what happened. But I have photo evidence as well as my parents letting me know that I apparently refused to go into surgery without my ipod because I wanted music to help me relax. Well, if you look at the pictures, my ipod wasn’t even on lol. I was so out of it that I thought I was listening to something when I wasn’t. I also like to take both happy and unhappy pictures of my journey. This is not only for my blog but also to help remind me after it’s over, I survived and everything worked out well. Aside from taking new photos, I like to have existing ones of my friends, boyfriend, dogs, etc that remind me of fun and happy times in order to take my mind off what is happening that moment. I have also painted my nails while in the hospital and had friends come entertain me, haha.
M: How did you decide to start blogging about your experiences?
E: After about 2 and ½ years with the disease and two vaginal surgeries later, my tests kept coming back clear. I was put on a 6 month schedule instead of every 3 months and was starting to see a glimmer of hope that this may have just been a fluke thing and would never happen again. Then I received a call from my doctor one day after getting scanned stating that he would like me to see a lung doctor they had at the hospital (I was then at Memorial Sloan-Kettering Cancer Center in NY). I knew this was not a good sign. Long story short, I was told my Cancer was back and now in my left lung. Due to the location of the tumor, I was told until I was cut open on the operating table, they would not know how much of my lung would need to be removed. I ran the risk of losing half or more of it – which as a singer, was the worst news I possibly could have imagined. I was scheduled for surgery the end of June and lived in fear and constant worry until then. Because writing has always been an outlet and stress relief for me and since I’ve never been one to keep my mouth shut, I decided to start a blog to outline what I was going through. It would not only be therapeutic for me, but perhaps someone going through what I was would find it and take comfort in knowing they weren’t alone. I have been keeping my blog (www.shouldishaveit.blogspot.com) since June of 2011.
M: Have you had any complete strangers reach out to you after finding your blog?
E: I like to keep track of the pageviews and have had many people from all over the world contact me in regards to my journey with this disease. Some have just offered me words of encouragement but others have written that they appreciated my honesty and candor and that I had helped them – if only to give them a chuckle in a dark time. There is no greater reward then this for me.
M: Could you describe how sharing your story has affected your journey with Cancer?
E: If I could have found someone so open and blunt while documenting what they were going through, perhaps I wouldn’t have felt so alone. Yes, the people in my life have been nothing but truly amazing and supportive (and I honestly mean it when I say I have the most incredible parents and friends) but they are not me and aren’t inside my head on good days and bad. They don’t know what it’s really like to be told time and time again that the Cancer is back, suffer through 8 surgeries, feel as though your life is a revolving door of pain and recovery and basically live from one set of tests to the next. I have had some extremely dark times where having someone who’s been there or is still there tell me it’s going to suck, but be alright, would have helped. It’s definitely different hearing it come from someone whose actually had to endure the same crap you have then just a supportive person in your life keep telling you to be positive and keep going.
M: Where are you now in your journey with Cancer?
E: A few years ago I was informed through some tests that my Cancer is estrogen based. I was put on injections and daily medication to remove the estrogen from my body. This has kept the tumors in both of my lungs at bay but since being diagnosed, I have unfortunately had this ugly disease pop up many more times than I would have imagined. Since being on the injections and medication, I have been in a perpetual state of menopause – and will be until the meds stop working and I am taken off. This means I have the physical side effects of menopause and the mental side effects. I am currently 29, and was 27 when I started this regimen. The most traumatic thing out of all the side effects is that I will never be able to have children. Ironically enough, when I was younger I never used to want them. Of course now that I’ve been told I never can, I want this more than anything. I think this weighs more heavily on my mind then having the disease itself. My emotional state has been almost unmanageable at times and I have been working hard to relax my mind as much as possible. On top of going through the daily torments of the disease, being in menopause also makes me crazier than I ever wanted to be! I receive my injections every 4 months as well as CT/PET scans of my entire body. To date, I have had 8 surgeries (including 3 vaginal, 2 lung, 1 calf, 1 butt cheek and 1 pelvic), gone through a clinical trial and have had 7 weeks of radiation – aside from countless needles, tests, exams and physical/emotional horror.
M: What “words of wisdom” and/or advice would you give any young adult facing Cancer or another life-threatening illness?
E: There are going to be some extremely crappy times – beyond what you ever could have imagined. BUT, you will soon learn how much stronger you are then you ever dreamed you could be. I am coming up on my 6 year “anniversary” with Cancer and have been through way more than I ever thought I could handle – but I’m still here. I’m still fighting and will never give up (even though there have been times I definitely wanted to). Surround yourself with supportive people and don’t be afraid to talk about what you are feeling. If you’re sad, cry. If you’re angry, yell. If you’re happy, laugh. Disease brings a rollercoaster of emotions along with it but bottling it up and trying to keep a smile on your face all the time even when you feel like your world is crumbling around you will help everyone else but you. Put yourself first and take everything one day at a time. That is my greatest struggle and one I am trying to work on as much as I can. Don’t worry too much about the future and what will happen next week, next month, next year – focus on the now and today.
Thank you so much for sharing Erin! If you are interested in reading more about Erin, or learning more about her story, you can find her personal blog here.