Brain Surgery and Radiation/Full Update from Lizzi

Recovery was a bit harder than I expected, especially coupled with chemo. I’m so thankful we had family here at all times to help with me and our little guy.  I did develop what’s called radiation somnolence. It felt like narcolepsy, I’d fall asleep doing anything. I’d taken to paint by numbers to keep me busy and my loved ones were constantly finding me asleep with paint brushes in my hand, it was pretty funny. And, apparently, I was just out of it. I’d fall asleep in any position. From surgery, I still have some trouble typing and need a cane to keep me on the straight and narrow, but continue to improve. I have trouble finding words sometimes still.

Now onto the full update. I was rehospitalized after my second chemo for a fever of 104! So, I missed trick-or-treating (major

My sister and I at chemo enjoying lunch.

bummer) but I was so out of it I kept forgetting. I did have a chest CT which showed minor pneumonia so I was bombarded with antibiotics. Unfortunately, the CT went low enough to incidentally show my liver. They found teeny tiny metastasis there. Everything (good news I guess) is tiny; scans like PET’s hadn’t caught them (PETs resolution is about a pencil eraser, these are too small) so now we know they are there to treat too. I’ve finished 3 cycles of Carboplatin/Taxol (I hadn’t had the Avastin due to potential effects to the irradiated blood vessels in my head), I’ve also had 2 blood transfusions in the process due to low red blood cells.

I saw my oncologist before my last chemo and he decided to change my regimen. My CA-125 (cancer marker) crept up between treatments and he wasn’t comfortable holding out on the Carbo/Taxol/Avastin routine so we are switching to a Cisplatin/Gemzar/Avastin cocktail. I’ll probably feel better (Woohoo) and grow my hair back. I had my first dose of Cisplatin/Avastin. I’d had the Cisplatin 2 years ago when I was originally treated, will start Gemzar next week (it wasn’t in yet) and slept like a baby last night, sleeping is hard during normal hours for me during cancer treatment! Naps, however, are easy! If you are in treatment and having trouble with it, with pain, anything DON’T be afraid to tell you Dr. I wasted weeks keeping things to myself which only hurt me. So be your own advocate, please!

HAPPY HOLIDAYS from our family to yours. We are working on Wayne’s “Cheese” smile! But I did have enough energy to go with my dad and hubby to cut a Christmas tree!

We are getting back in touch with MD Anderson to see if they have more tricks up their sleeve. In the interim, I’m still not my full self but know I will be soon. This felt like the first blow but my oncologist just says it’s like a shovel and sand, the previous treatment was working and we were getting the sand out (my two palpable lymph nodes are gone) we’re just looking for a bigger shovel and we’ll find it. I like him a lot and I know we’ll find it.

Read Lizzi’s original post here.

Cancer Broke My Cup

Sometimes I still can’t believe that I even have had cervical cancer, much less still dealing with the fallout from it-complications from surgery, side effects of radiation. I intellectually know that it happened, but there are moments where I look at myself and my life and go, “Wait…what?” Sometimes I actually look at and feel my radiation tattoos before getting in the shower. Yeah, I know that is weird, but there are times I need to connect with it — I need to stare at my markings, touch my port, my scars- to physically say, okay this happened and to remember just how far I have come. To have a slight even if for 20 seconds-mini celebration that I am here-that I have endured.

See, I believe we all have a choice when it comes to how we are going to look at our cancer, much how we all have choices in how we view anything in life. Are we going to be the cup half full girl? OR are we going to be the cup half empty girl? Before cancer-the answer was easy for me. I definitely was a silver linings person, taking lemons and making lemonade. I have had laugh lines since I was 10 and have always been able to find something to smile about. But enter a cancer diagnosis..enter in chemotherapy and radiation…enter in internal radiation…enter in infertility…enter in surgery…enter in (fill in the blank).Suddenly, being the cup half full chick was not as easy. I had faced some really tough things before, but never was my life on the line. Never had I been told, “You can either do treatment or live for about 3 more years.” Of course, I had thought about life after death, but NEVER had I really truly sat with it as a possibility. And what would treatment look like for me? Could I even do it? I remember sitting there with my oncologist when she was explaining to me where the cancer was, giving me my stage. She started explaining the action plan and what was going to happen to my body. Time stood still as I looked at her mouth moving. Nothing was really the same after.

Now back to that choice. I had to consciously ask myself, “How are you going to approach this?” I was scared of all of the unknowns. I had never even been in the hospital! Was I going to STILL be the cup half full girl? I remember coming home alone that day and crying one of those big cries — where you just lay and cry, and cry, and cry. The kind of cry where you get up and look at yourself in the mirror and your face is puffy and you have a sinus headache. That’s where I was. Half full? I was afraid and devastated. How could I even be a half full girl? I felt like someone had just taken my cup and shattered it on the floor. My cup was broken. Dreams were stolen. I was afraid. Cancer had come in my life like a thief.

Yet. I still had this choice to make. Cancer had broken my cup, but I was still here. Life would never ever be the same, but there was a plan forward. It was a hopeful plan-not without risks and not without pain and loss, but there was a plan.

There is a Japanese art form, in pottery called “kintsugi.” It is a process that embraces damage-where the broken vessels are not discarded, but where broken pieces are mended. The artist takes the ceramic pieces and mends them with a lacquer dust of gold, silver, or platinum. The flaws of the piece are actually highlighted and not hidden at all, often resulting in a piece that is far more beautiful than the original plan. The art form ties in the Japanese philosophy of “wabi-sabi” that embraces the flawed and imperfect, that actually emphasizes rather than hides the broken pieces.

So as I looked at the pieces of my broken cup-this vessel I had plans for, this vessel that was not operating on the original plan; I chose to start picking up the pieces. The cup does not look anything like it did before, but just like in wabi-sabi, the more I embrace instead of hide, the more beautiful it becomes. I have to constantly remind myself of these truths. Oh how I wish, it could be where I just pick it up mend it and move on. For those of us who have faced cancer-we know that it’
truly never “over.” I feel like mending my cup is a daily choice. I find myself even now, while being declared “cancer free” in October, still very much dealing with complications from a life-saving surgery-complications that will more than likely be part of my life in some way from now on. In addition to the reality of “scan-life” and other life altering side effects from treatment. So the question constantly remains for me, for us: Your cup may be broken like mine-will you leave it shattered or will you begin to piece it back together with gold and platinum, turning your brokenness into purpose and beauty? The choice is yours.

We need to talk. We need to have conversations about cervical cancer and prevention. Let my simple t-shirt design, help you begin that conversation AND help me pay both past and current medical expenses related to cervical cancer.

 Unfortunately, I am in need of another surgery due to post radiation side effects, from a life-saving hysterectomy. This surgery will repair significant damage that has been done to my bladder and will require a 6-8 week recovery. Just as with the past leaves I have I had to take, I will not be getting paid during this period. Donations through my t-shirt campaign can significantly help with expenses and you’ll look super cool! There are hoodies and t-shirts for guys and girls! https://www.bonfire.com/start-the-conversation/