Stacy’s Story

Site created on March 11, 2018

Many of you who are here visiting this site know me and know at least part of my story. You know that the story of my cancer journey began back in 2014 while living in Thailand. I was experiencing lower back and leg pain and odd symptoms which culminated in me receiving the news that I had a tumor in my sacrum (lower spine). My then-boyfriend-now-husband, Matt, and I rushed back to the States where we discovered in early April that I had Ewing's Sarcoma, a rare type of bone and soft tissue cancer that mostly occurs in children and young adults. 

It was then that I underwent chemotherapy on an IE/VDC regimen that spanned 14 biweekly rounds in six months. Because my tumor was inoperable due to its location, it was crucial that my treatment was intensive. This led me to also complete radiation in the second half of my treatment. I spent five days/week for seven weeks receiving 33 doses of proton beam radiation in Knoxville, TN on top of my chemotherapy. By the end of that scary six-month period, I was exhausted, but over next six months I focused on my recovery and I slowly began to make gains in my physical, mental, and emotional health. 

The road to recovery post-treatment wasn't easy. Yes, I didn't have to sit in an infusion clinic two and three days a week to have drugs dripping into my veins and I could finally walk up the stairs without getting short of breath, but picking up the pieces of your life after being told you have a life-threatening and debilitating disease can be not only frustrating but also confounding. Even after my treatment, Matt and I had hard days. Because as 20-somethings, you never believe that you could have cancer. As 20-somethings, you're invincible... until you're not.  I still felt physical ailments most days, we were scared what the future might hold for us, and we were plainly broken.  On top of all of that, we were financially devastated. Our unexpected return to the U.S. brought us home to almost nothing in terms of security. We had Matt's caring family nearby-ish in Kentucky, one car, and Matt was taking multiple jobs while caring for me since I couldn't work. Times were hard, but we pushed through with hopes of better days and getting our lives back.

Fast forward three years and nine months later to January of 2018, Matt and I lived in a new city (Lexington, KY), we had a new home, new cars, new jobs, and most importantly, a clean bill of health. I had been rock climbing harder than I ever had and I even recall saying that I felt better and stronger than ever. Of course, I have some physical limitations, but many of those didn't seem to be exacerbated by my climbing. I could walk and hike with our dog, Layla, climb, and do yoga regularly. Life was good. 

One day in late January while working at home, I noticed that my typing had slowed down and I kept missing keys. This was my first clue. I didn't think too much of it, other than that maybe I had been tired causing my work to be sloppy. The next day as soon as I began typing the same pattern arose and I figured out that it was my left hand. Over the next two days, I had trouble lifting dishes and came close to spilling my drinks if they were in my left hand. I kept thinking I had slept on it too long during the night and it would soon resolve. Thursday of that same week I had been doing my climbing training workout at the gym, lifting weights and hangboarding. I complained to Matt and a friend that I was having pain in my left shoulder and that I generally felt week. I even noticed that the kettlebell weight was swaying uncontrollably in my left hand, causing me to decrease my weights, which was my second clue- I should be increasing my weights, not decreasing them on a training regimen. I made clear to Matt that I was concerned, but I would start looking into the cause of these odd symptoms. That night, shortly after going to bed I became restless. My left arm wasn't responding like it should and at one point in the night I picked up my heavy arm and it was completely numb and almost lifeless. I was trying not to panic at 2:00 am. 

I woke up early the next morning and made an appointment with a sports medicine doctor. He squeezed me in for a consultation. I had x-rays completed and I thought with my training program that I had pinched a nerve.  I told the doctor about complete medical history, including having ES back in 2014 but I've not had any complications since treatment as he performed neurological checks on me. He stepped out of the room a few times to review my x-rays and, I assumed, to discuss my case with the med students. He continued to do more and more neuro checks which seemed to never end, and in my mind it was overkill. About an hour later, the doctor looked at me gravely as he said that he didn't think this is was caused by a pinched nerve. Everything in my shoulder and neck was fine. I immediately panicked, breaking into tears thinking that I had a devastating neurological disorder. I had no inclination that this could be related to my past history. 

He sent me to the University of Kentucky Emergency Department where I completed a full workup of scans and lab work to determine what this could be. Matt and I anxiously waited in the hallway into the evening hours to find out what this possibly could be. Finally, the Attending Physician rounded the corner and took a seat in front of us. He revealed to us that I didn't have a neurological disorder, but a brain tumor. Matt and I immediately embraced one another and began crying as our world started crumbling. I was admitted that night and told I needed to stay in the hospital until I could have brain surgery early the next week. We canceled all of our plans, made arrangements for friends to watch Layla, and tried to mentally prepare ourselves in between the sobbing as much as we could for this big surgery and the next few months. At this time we only knew that there was only one tumor, but we weren't sure at this time if it was malignant vs. benign. We'd have to wait for the biopsy results to learn what kind of tumor this was. 

I had my craniotomy that Monday, from which I recovered very well. I was allowed to leave the next day. We received my biopsy results a few days later, which showed that the brain mass was cancerous and was an "Ewing's-like" Sarcoma. With further genetic testing, we discovered that the tumor was indeed ES. I would need to start chemotherapy within the next few weeks. I would also need to do a PET scan and undergo a one-time dose of gamma knife radiation to my brain. 


To add to things, my PET scan in early February showed that I had a mass on my left side of my lung and heart, for which I will also need surgery. To date,  I received the gamma knife radiation (March 6th) and a VATS  procedure (on April 3rd). I have recovered well from both and I will continue to keep my hopes high during this journey!

Newest Update

June-July Update

Journal entry by Stacy Hodges —

Hi friends!

Since my last post things have been looking up. As some of you may know, my latest brain MRI showed that the first brain tumor is still gone and the second one has shrunk significantly. This is the kind of news I've been anxiously waiting for. Although we are also ECSTATIC over the news that I have no other growths in the rest of my body and that the other current tumors (in my hilar lymph node and L5 disc) have been stable, I had been most concerned over the tumor(s) in my head. This goes to show that whatever we've been doing is working! Whether it was the chemo, radiation, my alternative methods, or all the above, I'm led to believe that it's doing the trick. Therefore, I will continue complementing my clinical therapy with my "at home" therapies. 

As you may know, I've been trying for the last 2 months to be accepted into the clinical trial involving immunotherapy at Cincinnati Children's Hospital, but, my circumstances have changed. I was scheduled to begin the trial in late June/early July but after many suspicions, we solidified that I have Hashimoto's Thyroiditis, an autoimmune disease that involves your immune system mistaking your healthy thyroid cells as "invaders" and launches an attack. This is a very common disease with my case being very mild at this time. With me having Hashimoto's, an autoimmune disease, I was permanently disqualified from the study. This is because the protocol to be used in the study enhances the immune system and could likely result in it attacking my healthy cells throughout my body and very likely going for the thyroid first. Even though there are a few more clinical tries out there that we are considering, my docs here in Lexington are going to replicate, in a sense, the therapy provided in the Cincinnati Children's study. So, I will still be receiving immunotherapy!

In actuality, I've already received my first dose of the immuno drug Pembrolizumab a week ago. With immuno drugs there is the concern that your immune system could target your healthy cells, resulting in autoimmune-like conditions. So far, it seems that I have tolerated my first dose of Pembro very well with no major side effects. Next, we will be adding in radiation to my hilar lymph (1 dose) and L5 disc (3 doses) this and next week. Because the radiation compounds the effects of Pembro, if I continue to tolerate these two therapies over the next couple weeks, I'll also receive Decitabine, a low-dose chemotherapy drug. This also adds to the desired effect of disturbing tumors' defenses and allowing my immune system to recognize the cancer cells so that they can be targeted.

I'm relieved that my docs have put together a treatment plan that is tailored to my desires and that is also cutting-edge therapy. Let's hope it works! As the super optimist that I am, I believe that this new treatment + my alternative methods will achieve the results that I want (permanent remission).

On another note, I want to thank several people who have made a difference in my life lately:

Lauren McCloy & Helen Smith- Thank you for organizing and fundraising toward our goal of $15k. Also, thank you for becoming baldies with me! Welcome to the bald and beautiful club! I'm so thankful for you two.
Joel Booth- Thank you for also shaving your head on camera and being an awesome long-time friend. I'm grateful for your support!
Molly Johnson- Thank you for putting to use your mad hair-buzzing skillz to help with our fundraiser. You're amazing as always!
Jaime S. & the Livongo team- Thank you for my Thrivosity box and for continuing to support me with donations and gifts. You've all given me so much and I can't say how lucky I am to work with such a generous and compassionate company!
Anna Fuller- Thank you for the lovely teas. I'm excited to try them!
Anna Fielder- Thank you for putting out so much effort to keep up with me and arrange to see me on your vacation. I also want to thank you for your patience even when our plans fall through. You're a rock to me <3.

I also want to thank all of you who are reading this who have donated to my fundraiser and/or supported me in some kind of way. Saying that I am grateful for your support doesn't do it justice, but I truly am.

Wish me luck these next 6 weeks that I tolerate this new treatment well with no adverse side effects and that it does the trick! 
 
Love & light,
Stacy
Read More of the journal titled "June-July Update"
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