How my story begins: I began bleeding (I had already gone through menopause, so this was really scary) one evening after planting my onions. I was very concerned since I knew it wasn't a period because I hadn't had one of those in five years. By the second day, I knew that something was badly wrong. My mother lives only three hours from where we were in South Carolina, so we made the decision that we needed to move back into mainstream society and get this taken care of. With the understanding that we could pick up our dream when I was better. This was May 2018 and only three weeks before the grandchildren were coming for the summer. Thankfully, a friend and mentor from my high school days had a rental that he was more than happy to let us have. So we put some things in storage and moved to North Carolina. The next week I had ultrasounds and the following week, I had scans. The grandchildren flew in on June 1st and I got my diagnosis just ten days later.
Life before my diagnosis: My fiancee and I were living on our property in South Carolina. For 8 months we were living in a tent, getting our off-the-grid supports sorted out. We were planning which trees to cut so that we could build a home, ourselves. We cleared a space for my garden and a temporary shelter for us. I was so happy to be doing what I'd always dreamed of doing: building our home with our own hands and living a homesteading lifestyle. Every morning I woke up to the sounds of the birds singing and squirrels playing.
How I felt after diagnosis: I felt surreal, like I was walking in a fog. I asked how I got HPV and we even had my fiancee tested (he was negative). The doctor explained to me that it can lie dormant for years and years. Then I figured out where I had gotten it over 20 years ago. I asked if that was possible and when my oncologist said that yes it was possible, I was very angry. and I am still angry!
Telling my family and friends: My grandchildren, ages 13 and 11, heard the phone call from my oncologist because they are sneaky children and know how to use buttons that grandma doesn't (speaker phone). I didn't have any problems telling my family and close friends. I cried a lot. I had never felt so scared. There was nothing I could do to fix it and no guarantees that it could be fixed.
My treatment: My treatment consisted of 8 doses of chemo, 30 external radiation treatments and 8 high dose internal radiation treatments. I was so scared watching that isotope go into my body. Being alone in the room and unable to move made it feel like a punishment.
How I felt after treatment: After treatment I felt weak, tired, exhausted. I couldn't clean my house, which made me feel like a failure. My fiancee hired someone to come in and clean the house, as I was still sleeping a good deal of the time.
What was most difficult for me: I'd see people that I went to school with and they were so healthy and moving around and doing things that just a few short months ago I'd been able to do. I shared my cancer diagnosis with my friends online, so I thought everyone that should know about it already knew it about it.. As it turned out, I kept having to inform people why I looked like death warmed over. I couldn't go to church or any other crowded place because I had no immune system left. I spent most of my time at home with my cat and my fiancee. I have other medical problems - diabetes, fibro and osteoarthritis - but amid the cancer treatments I was so weak that I didn't even care how much I already hurt.
What I did to help myself: I started keeping a journal and writing down the things that I was thankful for, but also the things that annoyed me or made me angry - mostly things that I couldn't do. I saw other people bouncing back and I felt like I was deformed because I felt so tired all the time and had only energy to do two or three things a day. I also tried to find a support group. There isn't one in the county that I live in. The closest one is over an hour away and I just didn't have the energy to drive myself there and back. I started having days where when I felt like I couldn't emotionally take one more ounce of failure. I would get into my nice warm bath tub and I would think about everything that I had been through. The anger was always present. Sometimes I'd cry and other times everybody and their brother got a good cursing from me. These were MY alone moments and were really very helpful because I could get the emotions out in private and not scare the hell out of anybody. I also talked to my fiancee a lot. His mother had a 20 year fight with cancer and finally lost that battle April 2, 2018. She was one remarkable woman and she will be missed greatly.. She was a great encouragement to me. When I couldn't talk to anyone else I could talk to her because she understood!
My life after cancer: I don't even know where to begin. My memory is shot and I have to make lists all the time. Even then, there's no guarantee that I'll actually get to what's on the list because a lot of the time I forget to take the list with me! My life is totally different in that I get winded just sitting on my butt planting flowers or seeds. I get resentful because the one person that understood exactly what I was going through is no longer with us. I have nobody to talk with about any of it that truly understands. I'm not as active as I was. It seems like chemo and radiation activated all sorts of other problems including another cancer under my left eye, what I just had removed three months ago. I've heard the phrase "your new normal" so many times that I feel like I could slap the next person that says it. I want my old life back, where I had some energy and could do what I wanted to do. I'm unable to work at all and my doctor says that I can't ever go back to work and that going back to our property in South Carolina is not going to happen. I guess that cancer was the last straw for my body.
Where I am today: I'm not much farther along than where I was when I finished treatment one year and eleven days ago. I'm still very tired. I sleep a lot. This past summer I only managed to grow some tomatoes and squash. I still can't clean my house by myself so my lady comes twice a week to help me and my fiancee (who works 70 hour weeks) does what he can. I try to walk a little every day as my joints will allow. The biggest change is in my mental attitude. I have gotten back into my sewing and I began to make dresses and pants for Samaritans Purse, a charity that sends boxes all over the world for underprivileged children. I've also gotten involved in the costuming community- as I have been sewing for almost 50 years and used to enjoy my Drama elective in college because I always did the costumes. Now, I am making costumes for myself and planning to attend Costume College in California in July. I'm also planning on having some garden boxes in the spring so it will be easier for me to enjoy my garden. My oncologist just says "you're not 25 anymore." I've come to hate that statement! I know how old I am and definitely don't need to be reminded. He's baffled by the residual effects that don't seem to be going away. I still can't taste some foods. Others either smell or taste awful, so I'm very picky about what I eat now. It's a different world post cancer and I have to adjust accordingly.
What I want other women to know: That there is HOPE... there is always hope... NEVER give up, no matter how badly you feel. Be WHO you are in that moment and if it isn't your best self, so what?! No matter how many people love you or support you, you are still doing this alone. YOU are the one feeling everything and unless people have walked in your shoes they can't possibly understand the frustration and the anger or resentment. Just be YOU, warts and all. Love yourself!!
How I will try to help others: My grandchildren have both been vaccinated for HPV, because this is something that both me and their mother have had. Nobody should have to go through such horrific treatment just to stay alive. I tell every woman that I know to get checked out and to NEVER miss that yearly exam and to always make sure they are screened for HPV. I know the women in my community get sick of hearing me say it. But if I can make just one person aware of what they need to be doing so they can be proactive with their healthcare, then I've accomplished something.
Any additional information you'd like to share: During radiation treatment I got what everyone thought was a cyst on my eye. I was sent to the eye doctor and got another biopsy. It was cancer and had to be removed. Now I make sure that every time I bathe I look at every mole or spot on my body to make sure that nothing is growing. I think I'll probably do this for the rest of my life. I'd never been fearful of anything until cancer showed up in my life and now I will do anything that I have to do in order to keep it from being in my body.