Rebellious Hope

  • #SFD Soooo Why now?

    I’m probably long overdue for any kind of an official “blog” and I’m honestly semi-dreading the project it will be to sort through all of my social media posts since 2020 and sort through the “noise” to really bring in what is most important to share as I try to capture my journey with ocular melanoma. But here we are.

    If you’re reading this page, learning about this blog, I hope you’re just here as a witness to my story, and not because you too, are one of the 6 in a million people diagnosed with ocular melanoma.

    But if you are, allow me to give you a special mantra to focus in on when the days are hard.

    #SFD It literally means “hashtag shit, fuck, damn.” Cuz with this cancer, sometimes that’s the ONLY response you have to…whatever new curve ball you’re navigating.

    I’m now 2+ years into my diagnosis with ocular melanoma. I’ve cried, screamed, laughed, peed my pants, been in denial, and really all around LIVED more than I ever have in all my years prior to a rare cancer diagnosis.

    I am sharing this blog in an effort to capture my cancer story more completely, to piece together the glimpses into my world and mental and emotional processing that I’ve shared and will continue to share on social media.

    If you’re here for the ride, I hope I can inspire you to trust in your own resiliency. To be your own advocate. And most of all, be rebellious in just how much hope you cast out to the universe.

  • 9.3.2020 “Home”

    HOME with my babies. ♥️♥️♥️

    I’m doing sooooooo much better this second surgery which has been a pleasant surprise.

    The procedure to remove the radioactive plaque from my right eye only took about 15-20 min so I was not out and dead to the world for very long compared to the first time. It took about half the length of time.

    I also came out of the anesthesia much stronger and alert than last week. I could open my left eye (non surgical) almost immediately and felt like myself. (Amazing how when you take a piece of shrapnel out of your eye you feel so much better…😬)

    My dad picked me up and we snagged a bahama bucks treat on the way home, and met Danny and the kids at grandma and grandpas.

    They were thrilled to see me of course and I was glad to see them, as much as I can see that is.

    Overall I feel like a totally different person this time and I’m so so thankful I woke up and that it has been a better experience round two than was round one!

    We are going to be home recovering—if you’re local and would like to visit please check in first before coming by.

    We are so incredibly grateful for the help and service we’ve received and all the love and support lately!

    Still a ways to go to recover the vision in my right eye and see the tumor shrinking but for now? For now it’s just time to be home and live life and love my people.

    But first, naps.

    , , ,

  • 9.2.2020 “One more night”

    One more night. 🙌🏻🙌🏻🙌🏻

    That’s it. It’s insane that we’re to the eve of removal day after this insane week. This week has gone fast and been as long as it’s own year all at once.

    Tomorrow is the removal of the plaque. Which means my eye will no longer have a chunk of metal in it. (Yes that has been as painful as it sounds!) And the tumor will be well on it’s way to dying. And life will move on because that is what I want. To move past this.

    (Minus my regular cancer scans every 3-6 months for the rest of 10 years.😬😭)

    I didn’t know at the start of the week if I could make it to Thursday.

    It felt so so hard earlier this week.

    But today has been a good day. A day I’ve felt rested and calm and in way less pain. It’s been a gift and I’m grateful.

    So grateful for all the help and care my mom and dad and siblings have given to me as I stayed here.

    For the random visits from friends and my sisters. For the laughter and absurdities we giggled about late at night. For the phone calls and video messages and the texts I haven’t been able to read all of. For the gifts and the silent prayers. For the meals sent here and to my home with Danny and the kids.

    For the time Danny could take off and be full time single dad for a week—and believe me, our kids are a LOT to handle on your own. We don’t realize how much of a team we are at home until we are separated for a time.

    I’ve missed social time and snuggling and hearing my kids, but I’m also so incredibly grateful for the quiet and the rest here.

    Thank you for the prayers—hopefully we are in the home stretch and after this it’s just a matter of fully healing my right eye and watching the tumor shrink a good amount by the new year so we know it’s on it’s way to a very sure death by radiation.😬😆

    Midnight is my cut off for water and food. Not stoked for that. But here we go again: tomorrow will be here before I know if and when I wake up I get to see my family again.

    , , ,

  • 8.29.2020 “Progress”

    Still got my selfie game. 🙌🏻😆😬

    I’m just happy I can finally crack my good eye open a little bit at a time. 👀

    Thank you for the prayers and the kind words I haven’t read yet and love and all the help to my parents family who is taking care of me.

    I’ve had my fair share of discouragement the last few days but it’s gradually getting better. I just have to be patient with my good eye not feeling too tired to focus for more than a couple min. For perspective I typed most of this blind. So that means I have magic memory fingers. 🤪

    Pain level Is okay as long as I keep on top of the pain medication. The rest of this week until Thursday, September 3, I am just supposed to lay low, rest, put in eyedrops four times a day, or rather have my mom or dad to put in the eyedrops. Hopefully I will be able to open my left eye more as the days progress and I’ll be able to like watch some movies or something. Not sure if I could do that yet. Audio books are my friend these days. Currently listening to midnight sun.

    at the moment, I currently have a thick piece of metal in my eye that is pulsing radiation into the tumor. So it’s not exactly very comfortable. And there’s not really any way to make it super comfy. But it’s the kind of thing that it seems like my eye is acclimating to it so it’s not as terribly painful today as it was on the first day.

    I have been able to sleep a lot more last night and this morning so that has helped. I feel surprisingly tired LOL.

    The next surgery is in five days. On Thursday next week. This will be to remove the plaque that is currently in my eye. Then my right eye still has to heal, but it is more likely to heal more quickly without some thing in it so while I am not super sure exactly how I feel after the second surgery, I have hope that I will feel slightly better than I did after the first surgery.

    Also cuz I forgot to mention: my MRI results for my liver came back much better. It’s looking a lot more like hemangiomas on my liver. Nothing looks alarming there so the oncologist will just be monitoring them to make sure nothing changes in the next three months and that will finalize the diagnosis.

    So: good things. This gold plaque in my eye is currently killing the tumor. So all good things.

    , , ,

  • 8.27.2020 “P-Day (plaque day)”

    Snuggled this miss and her brother and sister hard right now and heading to surgery this morning. Wish me luck—I’ll be ready for national pirate day after this. 😬

    Also: I’m human. And I proved it at 3 am today when I woke up in a panic cuz I forgot to bring in 20 fresh freezer meals from my car last night. They were sitting for 7 hours sooooo…yeah. Gotta reorder those. 😭😭😭

    I’m an emotional basket case this morning but thank you for the texts and messages. We will update as we are able later today. …

    …….

    Danny (Danet’s husband here). She is asking for no phone calls or text messages so that she can have her phone on loud and hear when the doctor calls Post op update below:

    Danet is out of surgery and recovering, trying to rest. She currently has patches over both eyes because it still hurts her right if she only tries to open the left. So she’s essentially blind at the moment, but she’s still awesome and will be fine when it doesn’t hurt so much to open her left eye. She is asking for no phone calls or text messages so that she can have her phone on loud and hear when the doctor calls. If you are family, reach out to myself or her mom for any update. Thank you for your prayers, positive thoughts, etc.!

    , , ,

  • 8.25.2020 “Blue”

    Blue

    It’s the only color that I can say I have really truly loved my entire life.

    I’m acutely aware this last few weeks of how blue my eyes are. And how much I love my eyes. And that my babies have my eyes.

    I asked my friend Darian to snap a few photos of my eyes to remind me that after my surgery, when my eye is all puffy and swollen and I can’t see out of it, when it’s covered with an obnoxious patch—this is what my eyes have been like. And they’ll be like that again one day soon.

    Of all my features, my eyes and my hair have always been the ones I felt most confident in. The pieces of myself that have been easiest to love.

    So it’s hard. Hard to feel like one of those eyes is under attack. Hard to let go of superficial things like having eye lash extensions for a while. Harder still to be reminded that it’s because my eye has cancer in it that I have had to stop breastfeeding before I would have chosen to.

    Tonight I’m shamelessly eating all the chocolate. And packing some to take to my parents with me for next week. And feeling particularly sad about it all.

    But these photos. I wanted these to remind me and give me hope after Thursday.

    to remind me to have faith in these beautiful eyes of mine to heal well and quickly.

    👀 photos by @darianclousephoto

    , , ,

  • 8.24.2020 “Unfair”

    I’m noticing the times my brain starts to go to all the unfairness of it all.

    The things and experiences I’m feeling robbed of….

    I’m trying to honor that. Allow space for the lost expectations while at the same time actively looking for the gifts of each circumstance.

    Like while I will need to wean Melody from breastfeeding, and that will mean things will look different and be hard for a while, while this wasn’t my CHOICE, I have had the gift of nursing her successfully almost 11 months.

    what a gift I HAVE time to wean her. Many moms aren’t given that gift of extra warning time in a cancer diagnosis.

    And while it’s sucky I have eye cancer, what a gift that I have been dealing with vision issues since I was eight and am highly sensitive to my vision changing at all—which meant that I noticed quickly when the tumor started to just mildly affect my vision.

    While I’m pissed I won’t be able to workout for likely a good month or longer, what a gift that I have been working so hard on my mental health for so long so I have other tools to keep me feeling good outside of endorphins.

    And while it’s been a lot of information in a short time, what a gift that I had an eye doctor who listened, and multiple doctors period who took my vision changes seriously—because many people with this diagnosis are left running in circles trying to find out what is going on since the cancer is so rare and unheard. So what a gift I had doctors who took it seriously and have been acting so fast.

    While it feels unfair I’ll have to spend a week away from my kids and husband and basically be self quarantined for a week away from them, what a gift that I’ll be able to do that, because I have an amazing capable husband who can more than handle solo parenting, and loving family and friends ready to help at the drop of a hat.

    While I may lose the hair (lashes) on my eye from radiation, have other side effects that will potentially affect my vision on some level—what a gift that they CAN isolate radiation only to my eye to treat something like this, so I won’t deal with extensive hair loss like with chemotherapy and radiation for other cancers.

    I’ve decided and keep re-deciding— that there is no rule book for how to do this.

    No rules about how emotional I’m supposed to feel. Or not feel. Or how long it takes me to process it. Or if I have a good day or hard day. Or if I make my family dinner or order out or accept meals from friends. Or if my kids spend a whole afternoon watching tv because I’m on the computer emailing clients just trying to work on something important to me for 30 minutes. Or if I sleep in or wake up early. Or if I feel like cracking jokes or crying. Or if I sing myself hoarse in the car driving back from a COVID test I would rather have not had.

    So yes, while this is a life experience I would rather not live, I HAVE lived my life to this point. Fully. And I’m grateful for the gift of being able to appreciate where I am right now. Even if the next second I want to scream at the next doctors office to call me. 😬

    I’ll end with lyrics from the song, “I lived.” Thats been stuck on my heart today.

    “I, I did it all

    I owned every second that this world could give

    I saw so many places, the things that I did

    Yeah with every broken bone

    I swear I lived!”

    And dammit I’m going to keep on living each moment as it comes.

    , , ,

  • 8.23.2020 “Mid-Conquer”

    “Chin up beautiful. You aren’t struggling. You are simply mid conquer.” Glennon Doyle

    Paddle Boarding adventure this morning with two awesome uplifting friends!

    Thanks @wildhorsepaddleboards for these great boards and @skyedugger for inviting me and @stefanielarson ♥️

    There’s something immensely relaxing about being in nature, and being in AZ that has been difficult with how hot it’s been. Paddle boarding to the rescue! It was gorgeous on the water and so much fun!

    I even tried to stand up and somehow managed not to fall in 😆😅 it was a close one tho. 😬

    Kinda blows my mind that this is my last “adventurous” thing I will be able to do for a while.

    😭
    😭
    😭

    My first surgery of two is in 4 days—this will be the first to place the plaque with radioactive seeds to be isolated at the base of the tumor in my eye.

    Then it stays and I turn into quazimodo for a week with a thick piece of gold in my eye. I’ll be mildly radioactive 🎶 during that time and then 7 days later it comes out and the radiation continues to do its damage to the tumor.

    And my eye can heal as much as it possibly can after wards. Externally it shouldn’t change in appearance much-but we still don’t have any way to anticipate how much of my vision in the right eye will remain as the radiation continues to do its work on the tumor within my eye.

    My goal is to go paddle boarding again with Danny at the end of the month as long as I’m in the clear🙌🏻

    But I think starting the 7th I will see if I can do a 3 week food based cleanse called the ultimate reset—more to come on that later but DM me if you’re curious!

    Now to just be patient and find my inner calm waiting for this crazy season to pass.🙌🏻

    , , ,

  • 8.21.2020 “Staycation first, then surgery”

    And this is as close to the beach as we could get this year. 😅🙌🏻😬

    GREAT WOLF LODGE 2020

    March beach trip? Cancelled.

    September cruise trip? Cancelled.

    This trip!!? TOTALLY HAPPENED🙌🏻😍😅

    And it was the perfect solution for me having to be home in time for surgery in less than a week.🙌🏻😬🥴

    It was SO nice to unplug, just be present with these sweet kids of mine and my awesome hubby—the kids ran us ragged 😆!

    Mel LOVED the waves the best—the wave pool was also a fave of Joshua and Tatum. Specifically the “howl of the wolf” that announced when the waves would be starting. Mel would chase down the little waves as they got to the zero depth and she had a blast every minute (minus like 90 minutes when she was tired)

    There also were these GIGANTIC slides that we could go on with all of us (taking turns to keep mel down at the bottom)—they were pretty awesome and def our favorite to go on as a group.

    Joshua and Danny braved the wolf tail drop out slide (I was so nervous about it I almost didn’t let joshua go on it but he was so brave and so proud of himself for doing it!). Tatum grumpily sat at the bottom to wait cuZ she’s 7 inches too short!

    All the kids slept BOTH nights in the hotel really well, which I’m insanely thankful for!

    All in all the 2 nights and 3 days went fast, but it was the perfect length “staycation” for our family right now with everything going on. ♥️♥️♥️

    , , ,

  • 8.18.2020 “Finding meaning.”

    This ♥️

    And sometimes you find the reality you’re facing is something you never ever ever could have expected or would have wanted: but you’re facing it anyway.

    Like a cancer diagnosis.

    I feel like I’ve had a LOT of practice this past year in releasing expectations.

    But the rollercoaster of feelings comes to a whole new level when you’re suddenly looking at medical forms you’ve never looked at before (like a will and advanced medical directives) and trying to reconcile that you NEVER expected to be looking at one of those DNR consent forms at age 28.

    So I’m doing my best to be curious about my feelings—and allow them, but also recognize and remind myself that I’ve been through some hard crap in my life, and sure I never would have “picked” this as the next thing to get thrown at me in life—

    But I have been training for TODAY and anything tomorrow brings—for my entire life till now.

    And that is a hell of a lot more empowering that sitting in fear wondering.

    Doing my best tonight to just allow myself grace for not being sure how to handle this new wave of feelings, to remind myself of all the things I never thought I could handle that somehow, someway, I DID.

    I have been training for THIS—in every workout I’ve done that I didn’t want to, every loss I’ve faced that I didn’t expect, every HARD THING—has all been practice for right now.♥️

    UPDATE:

    In case you missed the stories:

    MRI brain clean ✅
    MRI liver ehhhh likely okay? But still not 100% okay 🥴

    Sooooo tomorrow I meet with a medical oncologist. We will have a biopsy by early September of my eye tumor, but at this point we need to evaluate if a biopsy of the liver is the best next step or just watch and wait. Uncertainty is a beast of a best friend these days.😱

    PS to the person/people who surprised me with this shirt, thank you. I love it.

    “Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.” Dumbledore

    , , ,
Design a site like this with WordPress.com
Get started