Month: December 2017

Dear Santa

Dear Santa,

It is getting down to the special night.  The night you will be delivering the gifts to the people from the good list; the things you know they wanted by reading all the letters you get from around the world.  Well, I might be a little late on the letter part but I figured better late than never.  Since we all know you can see us when we are sleeping and when we are awake I won’t even bother to try and use the “cancer card” on you and tell you all the things I want and obviously feel like I should get because I have cancer.  I am not going to ask you for material things.  I am not even going to ask you for an unrealistic wish of being cancer free; a wish that given my medical past is not a reasonable request.  Honestly, I am just going to get real with you.

This year, my first wish is for the gift of time.  However, it isn’t just any time that I am wishing for.  I am wishing for more time to make quality memories with my family.  More time for travel.  More time for advocacy.  More time for things I enjoy.  More time for life.

My second wish this year is the gift of stability.  I want to hear the words “stable disease” more frequently than I hear “your cancer is growing.”  Santa, I recognize that I am not going to magically wake up cancer free, it isn’t likely I will ever have a time that I receive the news that my cancer is in remission, I won’t hear those four little words every person with cancer hopes to hear when receiving scan results:  No Evidence of Disease.  I just want my cancer to stay as close to how it is now as possible; is that too much to ask?

My third wish is that you could give those people around me the gift of understanding and acceptance regarding where I am at in my cancer experience.  It can be challenging and emotionally hurtful when other individuals dismiss my very valid feelings about where I am at in my cancer experience. If I am talking about an upcoming scan it is hard to hear people tell me “I hope it is all clear”, I feel like I am disappointing them if it isn’t a clear scan.  Then, I find myself not talking about scans or results even if they are good enough.  I find myself afraid to share my version of good news; a version that does not meet everyone else’s idea of good news.

My fourth and final wish is that through my advocacy work I can give a gift; the gift of a life for someone who might have otherwise developed cancer.  I hope that through my voice and my story I can encourage women to seek annual wellness exams, ask questions of their gynecologist, and to take the time to learn symptoms of cervical cancer.  I hope that through my advocacy work I can help ensure that this generation is the last generation to have to worry about HPV related cancers by helping to educate individuals about the importance of the HPV vaccine in males and females.  I also hope that my advocacy work related to clinical trials helps to find a plethora of new treatment options and a cure for cancer.

Santa, I know that it might seem like I have a lot of wishes this year.  Honestly, I suppose I do.  These gifts are difficult gifts too.  They are not things you can touch or feel.  They are not gifts you can wrap.  However, aren’t those the best gifts of all?

Cervivor Love Always,

Erica

www.t0g.ce7.mywebsitetransfer.com/erica

 

My “New Normal” and the Holidays

I am still trying to figure out how to be around myself and now the holidays are here.  I am expected to be around all these other people.  What am I getting myself into?

Over the past year, I’ve been navigating a very new life after whirlwind treatment for metastatic cervical cancer. Immediately after finishing treatment, I felt broken. My normal life as I knew it was over. I didn’t recognize myself.  My face and body didn’t seem to be my own. Throughout much of this year, my recovery consisted of a lot of alone time; time trying to figure out how to be myself. A lot of the time was spent chasing information (and then trying to remember it), advocating for the HPV vaccine, regaining strength, managing menopause, going to physical therapy, and trying to quell pain and anxiety…seemingly all while sitting on the toilet. Thanks to pelvic radiation for all those bathroom trips! I still have so far to go that it’s hard to picture a day when I’ll be fully recovered and be my “normal” self. That’s okay— I’ll manage. I have no other choice.

I’ve developed a lot of social anxiety – I often feel so isolated from others in their mid-30s.  I feel like they couldn’t possibly understand how I’d suffered – how I continue to suffer. It takes a lot of mental energy to function in the outside world.  It is mentally and physically so much easier to stay home than to go in public and deal with being in pain or in embarrassing situations (especially if I eat the wrong thing).  It takes a lot of convincing to even physically get out the door.

I am grateful for the holidays; this time of year, really forces me to suck it up and get out there.  I have found that once I get out socializing, I feel better for having done it and it gives me confidence that it will get easier. I adore the people I choose to spend my time with and laughter heals.

There are still challenges.  When going to a holiday party or night out, do I just pretend that I’m fine? I am surrounded by people who don’t understand what it took for me to even get out the door.  People who didn’t have to take Imodium, remember a coccyx pillow, put on compression garments, and maybe even take an Ativan just to get out the door? Yes, I pretend I am fine and that none of those things are going on. When people say, “oh you look great”? I say, “thank you.” When they ask how I’m doing? I respond the way we have all been taught, “I’m good, how are you?”

I respond in these ways because, I truly believe, people mean well and are being kind and polite; I assume they probably DON’T want to know the state of my bowels this evening or the fact that I used a whole tube of concealer under my tired eyes. While I am there, I’ll order my weak cranberry mimosa because I want to be normal again, but my body can no longer drink OJ, non-carbonated beverages, or much alcohol. In an act of self-care, I’ll allow myself to relax and just be with my loved ones, eat food that I shouldn’t and pretend remember that cancer doesn’t have me!

While out, I strive to continue enjoying the evening, as though my body won’t revolt in horror at the first chance it gets.  I know that this time socializing will come with a cost, it does most likely mean that I’ll spend the next day elevating swollen legs, possibly wearing a diaper, and I remember that still won’t be too much different from any other day when I am home.

My advice to anyone dealing with similar issues as mine and dreading the holiday event calendar due to all of the managing we must do just in order to show up: Be kind to yourself and listen to your body. If it’s telling you to rest, then rest. Show up everywhere or cancel plans with abandon. Enjoy the moments however you choose to celebrate, or not celebrate, the season. And always keep wipes in your purse.

Learn more about my story here: https://cervivor.org/stories/mary/