Jillian

It’s my first loss since becoming an advocate. I knew in June when I got there, that this was me beginning to walk in purpose and that it was going to come at a cost. So many amazing women-at different places in their journey. Some 10 years out, some 10 months out. Some in the midst. Some returning to treatment, many struggling with side effects, and several living with it. Day in and day out, accepting that it will eventually take them but not today. Ladies so alive, stepping out in strength, to share their story so that we can eradicate this ugly awful thing that has derailed us, stolen from us, but made us stronger.

The cancer community is so interesting to me, because cancer does not discriminate. When you walk into the chemo room, it’s raw humanity. All races, genders, socio-economic levels, all in a fight to live. In its own way, it’s a beautiful picture of the human spirit. What I have found is that cancer brings out who you really are. It either makes you bitter, ugly, and angry or it becomes a chrysalis where you transform into this beautiful creation with this ability to love well and see beauty that others cannot.

The advocacy community is full of people who want their cancer experience to mean something. People who live on purpose and seek to share their stories, so there will be less stories. Advocacy costs. It means that you don’t put your cancer in a box and never think about it. It means you’re actively taking it OUT of the box on a regular basis. You’re talking about things that are hard, things that you yourself are still mourning, struggling with, afraid of, and wish never even happened. You are making yourself vulnerable in hopes that others will hear and just maybe that one person will take action. You are walking into hard spaces, where people are still being treated and dealing with life altering side effects that you’re still processing yourself. You are meeting amazing fighters and letting them know that you don’t have all the answers but that they are not alone. These fighters become your tribe. They become your family. And when you meet one, you know it. You know it because their spirit permeates the air and it’s like looking in a mirror.

I “met” Jillian online back in the spring. I had seen this amazing photo of her on the Cervivor page, where she was showing her scars and ostomy bag. At the time I wasn’t sure if I was going to be able to keep my bladder. I was preparing for the worst but hoping for the best. I found her story online and there were similarities. Same stage, SO MANY bladder and kidney problems. I found her on Facebook and reached out to ask questions, as I did with a couple of the other Cervivors who I found with severe radiation damage. Much to my surprise at the time, when I reached out to these women, they actually reached back. Wow. These women and their stories made their way into my mind and heart. I felt stronger for speaking with them. I felt like whatever was next for me, I could do it. They were living so bravely and if they could it, so could I.

Jillian used humor and I was so relieved. So many of our post treatment issues, with cervical cancer, revolve around pee, poop, butts, and vaginas….I had personally found humor but Jillian was the first one to break the ice with me there and make me feel like it was okay to be scared and to laugh at the same time. She had such a balance of honesty and humor. She made me feel normal and like whatever was coming my way, that it didn’t mean my life was over. I could live and thrive with a bag, if that was going to keep cancer out of my body.

Her interaction with me in those moments, meant the world to me. It was Cervivors like Jillian, who drew me into this community. Her spirit and strength will live on, in so many ways-in her boys and those closest to her. For me, I will take her kindness, laced with humor.  I will throw the life line to other Cervivors out there, letting them know they are not alone.  She made a difference in my journey, and I will share my story, and share my story, and share my story, until I have no breath. Until there are no more Jillians. I will walk in this purpose. I have counted the cost and will continue to walk with a vengeance. 

By the time Cervivor School came around, I was well enough to go but she wasn’t able to make it. After a message about watching the poop come out of her bag (I’m telling you this was woman was so funny!), she told me “don’t worry, we’ll meet soon.” I knew she was sick and I knew that it was not looking good.

I got a message from her in July. It was a poem that had been circulating that was written by a young girl with terminal cancer, in a New York hospital.  For me, I have gone back and read it many times since. Little did Jillian know that I was still struggling and needed this to push me, to live my best life after cancer:

SLOW DANCE

Have you ever watched kids on a merry-go-round? Or listened to the rain slapping on the ground? Ever followed a butterfly's erratic flight? Or gazed at the sun into the fading night? You better slow down. Don't dance so fast. Time is short. The music won't last. Do you run through each day on the fly? When you ask, “How are you?” Do you hear the reply? When the day is done, do you lie in your bed, with the next hundred chores running through your head? You'd better slow down Don't dance so fast. Time is short The music won't last. Ever told your child, We'll do it tomorrow? And in your haste, Not see his sorrow? Ever lost touch, let a good friendship die Cause you never had time To call and say,'Hi' You'd better slow down. Don't dance so fast. Time is short. The music won't last.. When you run so fast to get somewhere, You miss half the fun of getting there. When you worry and hurry through your day, It is like an unopened gift.... Thrown away. Life is not a race. Do take it slower Hear the music Before the song is over.

Read Jillian's Cervivor Story

Things I'm Loving in October

I started blogging to find my voice in telling my story, because when I was first diagnosed with cancer, I wanted to hide. I didn't want to tell anyone or even say "cancer." I began to find writing emails to my closest friends, to be therapeutic-which turned into the idea to blog. I had no idea, and still don't, if anyone else is even interested in hearing from me BUT for my own sanity-it's important for me to get it out there. I have found so much healing and strength in getting stuff out of my head and "on to paper." A wonderful friend who happens to be an awesome blogger, has encouraged me to try some different formats and to have fun with writing. So, I decided to start with a list of things I am currently loving in October!

1. LulaRoe

I discovered LLR on Instagram and was kind of confused. I loved some of the bright fun patterns, but couldn’t really figure out what it was or where to get it, just knew I thought it was cool. Then, enters a FB friend who wasn’t even a friend, but the daughter of a friend, who was starting her LLR business. I shopped her Facebook sale and got a couple of things that I ended up REALLY enjoying. But the real love for LLR has been since I had my hysterectomy. Y’all, a hysterectomy changes your body. I feel like I am wearing an inner tube around my pelvis. Seriously. The swollen belly is a real thing, even weeks after. And I have read that it can take quite some time for this to go down, even with diet and exercise. My pre-surgery pants do not fit. SO, I bought some LLR pieces because I’m going to need some staple items for when I go back to work. These clothes feel SO good and make me feel pretty!! I’m not kidding! They are flattering for all body types and I LOVE LOVE LOVE that the patterns are limited. So, that means you’re not wearing the same things as everyone else. How Fun! If you're interested check out my friends online boutique. (You can totally shop in your pajamas. LOVE IT!)

https://www.facebook.com/groups/LuLaRoeRobinDavis/

2. Trader Joe’s Tea Tree Tingle

The past 10 months has been crazy for my body-all sorts of things have gone wonky, including my scalp and hair. I cannot explain how grateful I am that I was able to keep a full head of hair during chemotherapy. However, the chemo and radiation dried out my hair severely and then the hormone changes have done a number on my scalp. Now that I am months out from treatment, my hormones continue to be a source of contention, as I’m 37 and in menopause. This has caused me to have patches of red, flaky, irritation on my scalp, almost like psoriasis. These patches itch, flake, and then burn really badly. I tried dandruff shampoo that helped some with flaking, but didn’t soothe. My sister suggested TJs Tea Tree Tingle shampoo and conditioner.

Y’all….it feels so good and smells awesome-like you’re a koala in a eucalyptus tree. (Do koalas hang out in those, I think they do?) Anyway, I have been so pleased with the way it naturally conditions my scalp and hair. The patches have actually gotten better, so I feel like it’s treating it and not just putting a bandage on the issue. AND it is so reasonably priced at around $4 a bottle.

3. Crispy Mornings

Texas pretty much has the seasons of summer, summer, winter, summer. Not kidding. AND this is the time of year where the weather acts like it has a personality disorder. We are having some cool/mild days and then days where it is sunny and 90. BUT, for the most part we are having some crisp(at least for DFW) mornings.

I am really loving being able to take Luna out for a walk and us both feeling like we can go a little further because we aren’t dying, since the doctors have told me to walk as much as possible. These mornings lend themselves to hoodies, cardigans, and an extra cup of coffee.

4. Shannon Dingle’s Blog

I found Shannon Dingle through my blogger friend (as mentioned above),Casey Chappell. Casey connected me with Shannon Dingle after we had sat over lunch and coffee several times discussing the church, social justice, the current election, life, adoption, police brutality, faith, Jim Crow, Jesus, racial reconciliation, national debt, immigration, refugees, white privilege etc. What I have found to be encouraging about Shannon's blog is that she is unapologetically a lover of Christ, but is not afraid to ask hard questions and enter into hard conversations. She is not afraid to say the things that a lot us are thinking and is willing to risk being labeled a (insert giant gasp) liberal because her conviction is to love first. I am learning a lot about myself these days-and feel like I have wrongfully been unteachable in the past and unwilling to listen to other views. I want to be rooted in the gospel, not some American "cultural gospel" that is another from of the prosperity BS that we so often speak against. I’m loving her blog because she is helping me find a voice and tease through a lot that is whirling around in my heart and brain.
http://www.shannondingle.com/blog
http://www.caseychappell.com/

5. This is Us

So being on medical leave, for the second time this year as left me with watching more TV than I have in the past 10 years of my life. I’m a news junkie, but you can only listen to it for so long. AND with this being an election year, sometimes you just need to check out from reality and watch something that is not directly related to current events.
“This is Us” on NBC is so fantastic.

The writing on this show is amazing. I think that some of my love for this show is due to the fact that it follows characters who are 36 years old. And since I am right around that age, I TOTALLY feel like I connect with these characters, the questions they are asking themselves, and the lives they lead and WISH to lead. If you are looking for a meaningful drama that has the perfect combination of twists and turns, this is your show. Kudos to these writers!

6. Nightgowns

Why have I not been wearing nightgowns?? When I found out that the next stage of treatment was a hysterectomy, I sat down with a friend who has had one, for what to expect and tips. One of the first things she suggested was nightgowns. Nightgowns?? I’m a pajama or yoga pants girl-a nightgown? I haven’t worn a nightgown since I was a kid, and isn't that what grandma’s wear? She suggested gowns because when you’ve had major abdominal surgery and swelling, you don’t really want anything touching your stomach. Sounded reasonable, so I got several before my surgery and they have been a LIFESAVER! The ease of having something on, that provides coverage for when you have guests, that does not bother incisions and provides easy access for the restroom is AWESOME.  It has been the BEST tip I received and I am loving them. I am rocking the granny gowns with pride and plan to find some not so granny-ish ones when I’m all healed up. I have found a wide variety at Kohls. So I guess you could say, thanks to Amy Cox, I am loving nightgowns AND Kohls.

7. Cervivor

The power of social media is mind boggling to me sometimes. The power of a hashtag and the ability to search and find those dealing with the same thing is pretty cool. Since my cervical cancer diagnosis, I started taking advantage of social media as I had never known someone with my kind of cancer and felt like I needed to read and connect as much as possible. Knowledge is power, right? So through social media I have found tons of encouragement and camaraderie in the cancer survivor community. The most encouraging has been through an organization founded by Tamika Felder, called Cervivor.

Felder is a cervical cancer survivor who started the organization to bring women together, to help them find sisterhood, and to educate them; preparing them to be the very best advocate possible for cervical cancer and HPV. The website itself is packed full of stories and resources, so helpful for someone with a diagnosis or caregiver. Part of Cervivor is “Cervivor School” where women actually spend the weekend together connecting and learning-preparing them for advocacy. These are held all throughout the states during the year, making them accessible to most everyone. I cannot WAIT to attend one of these!!! Cancer has a funny way of setting you on fire for the things you love, desire, and dream. Part of my dream is advocacy, telling my story, and survivor empowerment. I look forward to learning with other women and refining those skills to be the very best I can possibly be. In the meantime, I am loving cervivor.org and encourage you to check it out!

http://www.tamikafelder.com/

http://cervivor.org/

Leaning into the Storm of Cancer

You may have read them-the “What Not to Say to People with Cancer” articles. I used to skim over them, thinking I was all good. Me? I would NEVER say anything to offend someone with cancer! I am a thoughtful person-I’m the person who won’t even tell someone I’m praying for them unless I can actively remember to do so, so yeah...I was good I didn’t need to read such articles.

WRONG!!

‘Cause guess what? When you’re on the other side and actually HAVE cancer and a gynecological one at that-AND one that is caused by a virus. Guess what? People say some crazy shit. Stuff you would never imagine would cross the lips of someone who is supposed to care about you. Now, as I stated, I see myself as a reasonable person-so most of this crap I worked really hard to brush off and tell myself, “Well, they are well intended. They didn’t mean it the way it sounded.” My counselor even worked with me on phrases to shut people down in person. She encourages me to tell people they are being jerks, but I am still trying to find that voice. Perhaps this is it, through this blog post. I usually just tell myself that people don’t mean it really,  and then later call my absolute closest people to vent or screenshot messages from people and type in all caps to my best friend. I have found lots of articles on this subject, yet when meeting other survivors it is often a main topic of conversation. It’s hard enough having freaking cancer, and managing the feelings of those who are the very closest. Much less managing idiots on the fringe, who think they “have to say something.” Why is that? I think it’s because no one really cares until it’s them or someone they love. Like really love. So if you’re reading this and think you don’t need to, then you’re the exact person who does. If you're gonna lean into this storm, be prepared to be uncomfortable and teachable.

Here are some common mistakes that I have personally experienced MORE than once.

1. If someone you know gets a diagnosis and you find yourself overwhelmed with not knowing what to say-figure that out before opening your mouth. What I mean is, if you’re not comfortable saying something, just wait. That’s okay. You don’t have to say anything right away and perhaps you’re in shock yourself and need sometime to gather your own emotions and thoughts. That is better than getting in front of the person, fumbling, and saying something trite. Survivors are fighting. Really fighting, real things-life and death stuff at any given moment. REAL. We don’t want to hear trite empty sayings-we know to hang in there, we know to keep our head up. Perhaps instead of throwing out a “chicken soup for the soul” comment you could say, “I’m thinking of you.” or “I’m here for you.” or something I personally appreciated was someone acknowledging my pain by saying something like “I’m so sorry you’re having to deal with this. This sucks.” or “I know things are really hard right now, I can’t imagine.” THOSE seem more real and do not minimize the person’s cancer. The prior ones, that are more of a “hang in there” often make the survivor feel like cancer is not a big deal, and that you’re equating it with having a bad week or day. If you are really close with the survivor just being WITH them can make a difference.
2. If someone you know gets a diagnosis of a gynecological cancer or oral cancer that is caused by HPV, they already feel the very real stigma of that. You turning up your nose and saying, “Isn’t that caused by an STD?” Or “Isn’t that preventable?” Yeah, that doesn’t help the survivor, makes them feel shame, guilt, and again minimizes the pain and fear they are feeling with a cancer diagnosis.
3. In my personal case, I had not had a pap in several years. They were a few people who said things like, “WHY?? Oh I bet your oncologist got all over you for that!!” To which I had to say(after picking my jaw up off the floor), “Actually no she didn’t. She encouraged me that I can’t change the past but can change the future. She didn’t shame me for choices I have already made.” Y’all, I would say this was one of the most hurtful. If your friend or loved one missed paps and abnormal cells have grown and she gets a full blown cancer diagnosis, the LAST thing she needs is YOU making her feel guilty for not staying on top of check ups. I personally have reasons why I didn’t go, which will need to be another post, but listen to me; while there may be truth in those words, when you’re facing CANCER, you do not need people in your life making you feel worse about ANYTHING.
4. If you are someone who is into alternative/preventive medicine, great. I am super into nutrition, highly believe in it and there is a place and time for that conversation. But only if the opportunity presents itself, or you are very close with the survivor, and you feel they are open. Walk lightly.  I had two people, independent from the other, tell me in the height of treatment, that I needed to eat more mushrooms and the other was pushing cloves. Again, I feel these people were well intended but honestly I am not super close with either of these people-one came in the form of a message and the person had not said boo to me the entire time, and the other was from someone who said this definitively, in passing. Y’ALL!!! Seriously?? Again, it  minimizes cancer and invalidates the survivors treatment. I understand that there are cases where the survivor has been in constant treatment for months/ years and there may be an opportunity for someone to say, “Hey, have you talked your doctor or thought about___?” But most of the time that is just not going to be your place unless you are walking very closely with the survivor.
5. If the loved one is diagnosed with a cancer that will or has the potential to make the survivor infertile, PLEASE don’t say “Well, there’s always adoption. Lots of kids out there need a home.” It’s not that this, among the other things are not true-it’s that when you are in the throws of cancer AND you’re losing fertility, it sucks. It’s painful. It’s so overwhelming and can make you feel sorrow on a level you weren’t sure even existed. To hear someone say, “Well, you can always adopt…” makes the survivor feel like their feelings and emotions of grief and sadness are not warranted and again, minimizes what they are facing. We KNOW there is adoption. We aren’t stupid, we are grieving a loss, a death of a dream that has been inside since we were little girls playing with baby dolls. Yes, there is adoption and it is oh so beautiful, but let us grieve and feel what we are losing.
6. Lastly, try to steer away from the, “If you need anything, let me know.” I know, you’re probably thinking, what is wrong with that?? Well, you see when you get a cancer diagnosis you are completely overwhelmed and your brain is in a thousand different places from-What am I going to do about work? How am I going to take care of my kids? How much is this going to cost? How long is this going to take? Am I going to die? For myself, I am already the person who is notorious for not asking for help and trying to do everything on my own, so I have grown a lot during this time. After talking with other survivors though, I have concluded that when someone is specific it is waay more helpful. For example, “I’m coming over on Tuesday to bring you food and will do any errands you need.” or “I am coordinating a dog walking schedule for you or a meal schedule for you.” or “I’m coming to take the kids on Friday night to a movie and dinner, so you don’t have to worry about that.” THOSE things are so helpful and takes the thinking responsibility from the survivor. The survivor doesn’t need something else to think about. Even the smallest gesture can go long way. Think about times when you yourself have been sick with something like the flu-what were some things that were hard for you to get done? Think about your survivor feeling like that long term, and get creative in some specific things you may be able to help with.

I guess my overall advice would be to be more quiet than not, if you’re feeling unsure. Be present for your survivor but don’t feel like you always have to have the “right words.” Sometimes not saying anything and just being-is the very best. I would even go as far to say, if you feel like you need to “say” something and you’re not sure...say THAT. I found so much comfort when people close and not that close to me said things like, “Holly, I’m sorry. I just don’t know what to say.”

A cancer diagnosis of any kind or stage is hard. If you’re feeling overwhelmed, think about how much more the person you love with cancer feels. I have found for myself and other survivors, you really find out who is legit and who’s not. It surprised me who leaned in and who steered away. If you’re gonna lean in-be thoughtful and present. Your survivor may not have the ability to say it, but she needs you.

I have had an army of support and don't have pictures of everyone, but here are several of my people who chose to lean in.