Wide awake for a weekend update

Cancer, it turns out, is like having a permanent intravenous caffeine drip. I am interminably awake. From the moment my doctor’s diagnosis rang in my ear, I have become hyper aware, hyper vigilant and hyper present. Sleep simply evades me. My body is wired, and won’t let go…perhaps because I’ve been so afraid of not waking. Foreboding and panic established in me a cellular stronghold during that seemingly eternal limbo period between, “It’s cancer,” and “I’m in treatment.” And while they were certainly counter-productive, the groundless fears I entertained were impossible to suppress until a torrent of tests ruled out metastasis. Once cleared, those dismissed and conquered fears were quickly replaced by new ones. What if the clinical trial drug doesn’t work for me? How will my body react to the aggressive chemotherapy combinations I will undergo? What consequences and long-term effects will I experience? What if it comes back?

Triple Negative Inflammatory Breast Cancer is not like other breast cancers. Treating it as such has historically resulted in deadly consequences. It is the most misdiagnosed and mismanaged breast cancer, and regrettably the most aggressive type. Because it’s so rare it is suggested that most oncologists are only likely to see 1-2 cases over their entire career. As in my case it is, therefore, commonly misdiagnosed as mastitis, resulting in the cancer’s rapid spread and precious wasted time. “Over the last decades the management of this disease has really not improved significantly, and continues to offer a significant low survival probability at 5 years compared to other forms of breast cancer,” according to Massimo Cristofanilli, M.D., Professor of Medicine, The University of Texas MD Anderson Cancer Center, and an expert in inflammatory breast cancer. MDA’s Multi-Team IBC clinic is the world’s first such centre, treating some 100 cases each year.

“Every first is critical,” the MDA (MD Anderson) surgeon, Dr. Teshome, educated me during our first meeting. “Your first chemo, surgery and radiation are vitally important to your prognosis and outcome,” she said. MDA doctors and scientists know that a “complete pathological response (pcr) is the most important prognostic factor” for pre-operative IBC patients. What that means is: When neoadjuvant chemotherapy (i.e. chemo prior to a radical mastectomy) eradicates all trace of the cancerous tissue, risk factors for recurrence free survival are reduced.

Yesterday morning after just about 2 hours of sleep, sister, Sally Jo, delivered me to MDA at 5:30 am, where a power port was surgically implanted into my right upper chest. This port provides access to chemotherapy infusions, blood draws and any other future infusions (such as contrast) I may need. Performed by the inimitable Dr. Ervin Brown, my surgical experience was downright unforgettable. Dr. Brown is quite the singer it turns out. As I lay on the table under the influence of Propofol, Dr. Brown serenaded me with songs such as, “Dream a Little Dream of Me,” “What a Wonderful World,” and finally “On the Road Again” as he and his team wheeled me to recovery. I awakened from anesthesia with a smile on my face, declaring “I love you, Dr. Brown!” Today, the surgical site is sore and tender, but with more than 10,000 port surgeries to his credit, I’m confidant I’ll be up and running in a few days. Tramadol takes the edge off.

Following port surgery I received my first dose of the clinical trial antibody drug, Panitumumab. This antibody interferes with the growth and spread of cancer cells in the body and can increase the response to chemotherapy drugs. It was non-eventful. Prior to the infusion I took the prescribed anti-nausea medicine….So far, so good. Then back to Sally Jo’s to rest. Fatigue, exhaustion, pain and caffeine withdrawal proved formidable foes to my nearly constant wakefulness, strong-arming me into periodic naps throughout the afternoon. That evening we drove to the home of nephew and niece, Eric and Natalie von Wenckstern, (sister Jenny’s son and his wife).

Yesterday, Neal and Ben traveled to Houston from California to spend the weekend with me. Carl, Sally Jo’s eldest son, who has been another angel in my army, transporting me to the hospital and keeping me on task at Trader Joe’s, picked Neal and Ben up at the airport and delivered them to Eric and Natalie’s, where we are spending the weekend enjoying their precious, busy-bee baby, 15-month old Avalyn May, and their adorable first-born, aka Charlie, the Schnauzer.


I have taken only one pain pill today. But, I am still very sore where the port incisions were made. My appetite is decent, and I’ve not had to take any more Zofran, the anti-nausea medicine.

As of now, there is nothing scheduled for Monday, Tuesday or Wednesday. On Thursday, I’ll provide blood samples, undergo an ultrasound to see if the tumor has been affected by the singular dose of Panitumumab, then receive my 1st infusion of the combination Panitumumab, Carboplatin and Taxol. Carboplatin and Taxol are the chemo drugs.

For now, I’m resting at Eric and Natalie’s home, where I’m being treated like a queen. Between Jenny, Clay, Sally Jo, Carl, Eric, Natalie, and the many Texas Angels who are providing transportation, love, attention, nourishment and support, my every need here in Houston is being attended.

And sleep is slowly becoming a bit more common.
xoxo Jill
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