Blown Away

I am simply awestruck by the outpouring of encouragement and support received daily recently in the form of prayers, cards, texts, emails, blog & facebook posts, flowers, food, jokes, sweet treats, calls...the list goes on. I have never felt so loved nor have I experienced such kindness and compassion. "Thanks" falls woefully short of accurately conveying the immense gratitude in my heart.

Brain radiation occured last week as scheduled and was largely unremarkable, save being confined to a very Hannibal Lector-type mask for about an hour. The procedure is not for claustrophobes! I finished with a craving for fava beans & a nice chianti, as well as with relief that it should be a one time procedure. Future scans beginning in two months will reveal its effectiveness, but predictions from my radiation oncologist are encouraging. The effect of the brain tumors to my left arm & hands has unfortunately worsened but I am hopeful that function and sensation may be eventually restored so that I may resume important activities such as two-handed typing, talking with my hands and applying make-up while driving.

My trip to MD Anderson for treatment options went well. It was reassuring to present at an actual sarcoma center and to connect with a sea of other patients from around the globe who have also been stricken with this rare cancer. They have accepted me as a patient and, while they were not able to offer a miracle cure, are dedicated to working alongside my amazing team of Indiana doctors with some fresh strategies and treatment options which will hopefully help to manage my cancer, with a much appreciated emphasis on quality of life while I continue to undergo therapy. I will travel to Houston every eight weeks or so for testing and ongoing care.

Prior to my departure to Texas I had to have a chest tube surgically placed through my side due to a pneumothorax (partially collapsed lung) secondary to a hole which formed in my lung from the cancer. As the result, I was restricted from flying so a long road trip to and from Houston ensued, including my amazing father and sweetheart, Kurt, taking turns driving like warriors through the night to get me to my appointment on time. My step-mother, Terri, also stayed up all night, keeping the men awake and alert while also watching for deer alongside the interstates (we saw dozens of them). Thier efforts were valiant and truly tireless. My mother stayed home to care for the boys, managing to seamlessly get them to and from their daily activities in my absence. I am blessed.

Despite the quick trip we found time to try Houston's famous Pappasitos (best Mexican I've ever had) and some real Texas barbeque, from a picnic table with Loretta Lynn crooning in the background and a giant sculpture of an armadillo across the street. Looking forward to continuing to experience the Lone Star State.

I was thrilled to host Kye's end-of-the-year basketball party on Saturday before we left (again, with help from mom and my dear friend Stephanie Edwards) and to return in time to attend Bryce's first basketball tourney game. Also on Saturday came word that Bryce has been accepted at Brebeuf for high school beginning next year! I am beyond proud that God chose me to be mother to these two incredible boys.

 

We also have joy with our troubles, because we know that these troubles produce patience. And patience produces character, and character produces hope. And this hope will never disappoint us, because God has poured out his love to fill our hearts. Romans 5:3-5.

Thank you for bringing joy to my life.

Stephenie

Time to start blogging!!!

Having just passed the one year anniversary of my diagnosis with cancer last month, and after a year of exhaustingly trying to individually update my amazingly supportive team of friends, family and colleagues, I have finally decided it best to get the word out going forward via blog. It has been quite a journey and the saga continues...

My story began in October of 2009 when I developed a small, painful mass in my right thigh. As it continued to grow I sought medical treatment and was misdiagnosed twice before learning on January 22, 2010 that the lump in my leg was not a muscle strain, as I had been told, but a large cancerous tumor called sarcoma. Although the thought of cancer was initially frightening, I was comforted by my prognosis - five weeks of radiation to my thigh followed by a surgery to remove the tumor. The cure rate for sarcoma is high so long as the cancer does not metastasize (spread) to any other part of the body, namely the lungs, and my lungs were clear.

The surgery to remove the then football-sized tumor in my thigh was successful and I was grateful to be cancer free until a subsequent scan revealed a few sarcoma lesions in my right lung. Surgery to remove the lung nodules was scheduled but had to be canceled when, a few days before surgery, an updated lung scan showed the cancer had grown to about 20 lesions in each of my lungs - too much to remove surgically. I was admitted to the hospital almost immediately for a week of intense inpatient chemotherapy, to be followed by another three weeks of the same last spring and summer. Being stuck in the hospital for weeks without the boys has been the most difficult part of my cancer experience to date.

Chemotherapy prevented my incision from thigh surgery from healing completely, prompting a second surgery to that area in July. I have been continued on various regimens of chemotherapy for the past 48 weeks, which has largely kept the sarcoma in my lungs under control until this week.

I learned Monday that several of the tumors in my lungs have grown significantly since my birthday, only two weeks ago. My lung surgeon believes surgery would result in her having to take my entire right lung, which is not ideal as this would not leave me with good options going forward, considering the significant amount of cancer remaining in my left lung. I also learned that the cancer has spread to my brain. I have two tumors, one on the right and one on the left. The right-sided lesion has caused my left arm to become numb from wrist to shoulder, and has left me with limited use of my left fingers. The latter is seriously affecting my guitar hero game, which I do not appreciate. J I begin stereotactic (pinpoint) radiation to my brain next week. The course regarding my lungs is not certain as of yet. I am scheduled to be evaluated at MD Anderson in Houston, TX on 2/21 and my docs here are doing all they can to get that appointment pushed up due to the sudden rapid growth of cancer.

I recently came upon the following scripture, which prompted me to adopt a firm belief (as opposed to a mere hope) that I will be healed: Mark 11:22-25 “Have faith in God,” Jesus answered. “Truly I tell you, if anyone says to this mountain, ‘Go, throw yourself into the sea,’ and does not doubt in their heart but believes that what they say will happen, it will be done for them. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." Needless to say, recent developments have been a "test of faith.” However, I remain extremely positive and in high spirits, choosing to believe that I will be eventually healed from this awful disease, and knowing that if I am not, everything will still be okay.

I appreciate the mounds of support shown to me and the boys by so many over this past year. I love receiving your well wishes and words of encouragement and hope you will understand if you contact me and I am unable respond. I have spent nearly every day this week treating from morning to evening, with much more to come. I intend to be stingy with the time I have away from docs and hospitals, reserving it for my boys.

Please know that I am not afraid of what may come. I am blessed beyond measure and grateful constantly for the amazing life I have lead to date. I am often asked what I need. I am getting along great and feeling mostly good. I am working and cooking and going places and living my life per usual. My mother's relocation to the area last year has been a huge help. If things change due to surgery, etc., I will absolutely reach out for assistance. For now, I just need your prayers. Please storm the gates of heaven with pleas for complete healing and for God to continue to cloak me and the boys with a blanket of love and peace.

Much love,

Stephenie