Some months back I compared my cancer journey to a rollercoaster. Just as you think the ride is coming to an end you find yourself being jerked sideways around another bend that has you holding on for dear life as you are whizzed around out of control. For those of you that find enjoyment at theme parks and the adrenaline rush of a roller coaster this comparison may seem strange. For me motion sickness is a very real thing, and I have no idea why anyone would want to be traumatized in this manner. Well, that’s what the last 30 days have been like. A white-knuckle ride like no other and everything feels out of my control and deeply unpleasant!
I have delayed writing an update because I wanted more facts before sharing my news which has taken weeks to gather. I still don’t have all the answers but have found myself fielding more and more daily calls which is why I have decided to get you all an update of what I know thus far.
AN UNWELCOME SURPRISE
On Saturday, August 21, in preparation for my upcoming surgery (Lymph bypass and transplant), Dr. Kyle Yikuan Xu scheduled a CT scan of the Head and Neck. The CT was needed to identify lymph nodes under my chin and in my collar bone region that could be removed and transplanted into my right forearm and underarm. We were hoping that this surgery would help get my lymphedema under control and help eleviate some of the pain I was experiencing in my arm and shoulder. During this CT, which captured the top of my lungs, a mass was identified.
On Monday, August 23 my phone rang at 7:30am. Dr. Mahtani was calling to advise me that the CT showed a concerning mass. Once we talked through what this could mean, it was agreed that I would get a PET (Positron Emission Tomography) Scan. It was a year since I had undergone my last PET Scan, where no cancer was detected in my liver, brain, bones, or lungs. (These 4 locations are the most common areas for metastases.) I was gripped by sheer panic for days while I waited for my appointment.
On Friday, September 10 I had the PET Scan and sadly the results were not what I wanted. The right lung showed 2 masses and 3 nodules. Masses and nodules do not always mean cancer, and in fact, there are side effects from infection and radiation (radiation pneumonitis) that could cause masses and nodules. The only way to fully ascertain what we are dealing with was a lung biopsy.
THE BRITISH INVASION
To take my mind off the wait and anxiety around this latest development, my girlfriends decided a night out was in order. September marks my 1-year anniversary of my cancer diagnosis but also my 1-year survivorship. Surviving cancer and treatment should always be celebrated. I vowed to celebrate survival every day and so in true British fashion we made the night about woman empowerment, lots of fun and nonstop laughter in celebration of life.
We arrived at the restaurant dressed as British celebrities. The Spice Girls, Adele, Amy Winehouse, and Elton John joined Eddy and Patsy (Absolutely Fabulous Girls) for a night of fun. Eddy was not the one to fall out of the limo as she does in so many episodes of this great British comedy. This time that honor went to Posh Spice. As we lifted Gloria AKA Posh from the ground with raucous laughter, the tone for the night was set. I kid you not I laughed for 8 hours straight and ended the evening signing Karaoke (for the first time in my life) alongside an incredible group of women. Not once the entire evening did I think about cancer, my lungs or treatment. We just celebrated life.
THE SPECIAL WARD
Finally, the day arrived for the long-awaited lung biopsy. Lauren Munoz dropped me at the doors at 6:45am. Once I was checked in, I put on a hospital gown and was tucked up in my hospital bed. My vitals were taken and then my nurse prepared me for the procedure. Procedures, such as my lung biopsy, requiring radiology assistance are performed in the Special Ward within UM. It is a very busy ward with varied emergency procedures underway.
Once I was ready, they wheeled me down to the CT room where I met my surgical team. Coincidentally my surgeon was from Birmingham which made me laugh. The first step in a lung biopsy is a CT scan so the surgeon can ascertain which mass he will get tissue from and the best way to access the mass. Lung biopsies come with a plethora of risks including Pneumothorax, which is when air becomes trapped in the pleural space causing the lung to collapse, bleeding in the lung and infection. You must be awake for the procedure because you are an active participant. The surgeon needs you to hold your breath and adjust accordingly, but they do give you moderate sedation which helped alleviate some of the pain but most certainly not all. It was a very painful procedure that resulted in me coughing up blood and feeling very overwhelmed by the pain in my chest.
Every hour for a few hours following, you have a chest X-ray performed which allows the medical team to see if any unwanted complications occurred. Other than the coughing up of blood for about 24 hours and the searing pain in my chest, I am fully recovered and back to my normal self. The wait for the results is obviously nerve wracking, but no matter the outcome, survival and thriving despite this awful disease is my intention.
SOFIA’S HOPE - DENIM & DIAMONDS
The highlight of September was a fundraiser that I had the honor of being involved with, benefiting Sofia’s Hope. You will all recall that one of the chemotherapies that I was tortured by was Adriamycin, nicknamed the Red Devil because of its color and the toxicity (number one on the lists of all chemotherapies).
Like me, Sofia was treated by the Red Devil when at four years of age she was diagnosed with an extremely aggressive form of Non-Hodgkin’s Lymphoma. Sofia went through a year of chemotherapy. Eight months into her treatment she had heart failure which was initially thought to be viral. Unfortunately, it was caused by one of the chemotherapy drugs (the anthracycline Adriamycin) used in her protocol.
While Sofia was able to overcome that initial bout and live a full life for several years, the damage was done. On March 14, 2012, she was admitted to the hospital with an ejection fraction of 13% with the hopes that the medications that had saved her before would again perform their magic. Unfortunately, her heart simply gave out and on April 3, 2012, almost a month after her 13th birthday, Sofia passed away. Her story moved me so deeply that I vowed if I survived the Red Devil, I would host a fundraiser in her honor and in support of childhood cancer.
Jamie Doherty and the team at R2Unified, longtime supporters of Sofia’s Hope, partnered with the Addison to host a spectacular event. On Tuesday, September 21st 180 angels gathered in Denim and Diamonds to raise over $63,000 for this noteworthy cause.
The room sparkled with décor created by The Event Group. Felix, owner of Different Look, adorned the tables with charger plates and extra sparkle. Cristino Chocolates added a sweet treat for everyone, and Celebrity Entertainment kept the dance floor full ensuring we all danced away those extra calories. As always, the photos were captured by the amazing Munoz team. Before the evening ended, I was honored to be the guest speaker. I asked everyone to dig deep and generously donate in Sofia’s honor and that is exactly what everyone did.
As I said during the evening, what we do today writes our legacy. Tomorrow is not promised but today we are here - love deeply and give freely.