If childbirth was intimidating, chemotherapy was terrifying.
I received treatment at Cancer Care Northwest, in Spokane. My imaging had generated some confusion among the doctors and radiologists. While the rest of the body was clear, the opposite (left) breast lit up with energy on the PET scan. This would normally be an indication of cancer cells. But since I was still producing milk, there was no way to determine if this was cancer or lactation. They settled on a diagnosis of triple positive, stage IIIC. My treatment consisted of two traditional chemotherapy drugs, taxotere and carboplatin, and two targeted therapies, herceptin and perjeta. The taxotere and carbo would kill my body's most rapidly reproducing cells...among them, the breast cancer (fingers crossed), but also hair, digestive tissues (from the mouth lining all the way down), red and white blood cells....This accounts for the well known side effects including fatigue, nausea, mouth sores, diarrhea, hair loss, and suppressed immunities. The herceptin and perjeta sought out the breast cancer cells specifically, fitting them like "a key to a lock" and blocking the Her2 receptor. Essentially starving the cancer.
By the time I entered treatment, beyond the inflamed breast, I had purple bruising on my side, something that felt like grains of rice under the skin along my lower right rib cage, and firm, tumorous tissue approaching my collar bone. When my first herceptin injection started, all of this turned bright red. It burned and ached. An allergic reaction was ruled out, and it was concluded that my cancer was angry. Good. It should be.
Between 'pre-meds' (Benadryl and steroid injections), each separate chemo injection, and waiting time in between to watch for adverse reactions, that first day was about eight hours. Jason sat with me. Our friends Josh and Sara started the ritual of joining us at lunch time. My mom took the day off work to babysit. Over the next 18 weeks, all of this would become routine. I grew to look forward to certain things...picking up Starbucks on the way, one on one time with my husband, quietness for reading or napping, talking with Sara more than we'd had time for in years...
In an orientation class, the cancer center suggested journaling my side effects each day. The journal helped me decide which days to plan childcare, know certain foods that would trigger nausea or digestive issues, and after a few months, have the confidence to spend a week at a time home in Moses Lake.
(In Moses Lake, midway through treatment. Photo Credit: Picture Perfect by Roseanna)
Chemo was every three weeks on a Wednesday. I found that the day following treatment, I always felt pretty strong, due to the steroids that accompanied chemo. The next day, Friday, things would go down hill. I remember some mornings, during Eli's nap, I would turn on Disney Junior and sleep on the couch, wrapping my arms around the girls so I would know if they tried to wander off. On some blissful days, the kids would all nap at the same time in the afternoon. In later months, when the girls became too old for naps, my dad starting leaving work early and taking them on walks to the park. A sweet neighbor would occasionally pick Eli up for "dates." He continued to be a challenge, accepting a bottle only from myself, my mom, and Jason. We trudged along. Eventually I learned to schedule childcare on the Friday and Monday immediately following treatment.
The weekends after treatment were the worst. I would be so fatigued. Sometimes I slept the entire time. I hated the "chemo fog" the most. The best I can describe it is a feeling of detachment and confusion. I felt like I was covered in a snow drift of apathy. I started dreading that more than anything.
When we realized how much help I was going to need with the kids, we decided I would move in with my parents pretty much full time. Jason worked weekends, and spent his three days off during the week in Spokane, helping with the kids, taking me to appointments. My parents took over with the kids on weekends. My mom handled all of Eli's night feedings. Many evenings I crawled into bed right after dinner, skipping out on their bedtime routine. I wanted to be a better mom. But I had to remember that the best thing I could do for them was get healthy.
I was told within two to three weeks, my hair would start falling out. At two weeks, my scalp became very sensitive, painful to touch, and my hair started thinning. This was about a week before London and Quinn turned three. I really wanted to have hair on their birthday. I guess I was clinging to anything that felt "normal." As it started falling out more rapidly, I went in for a bold, sassy pixie cut.
(Hair Today, Gone Tomorrow)
Jason's parents flew in for the birthday weekend, which we spent in Moses Lake. My hair was falling out in chunks. I cried and cried, forced to admit it would need to be covered for their birthday. My mother in law brought a hat that was my husband's when he was stationed in the Northeast. His Aunt Liz wore it during her treatment for ovarian cancer. That weekend, sitting in my living room with my patchy, half bald head, I realized what a blessing it was going to be that Jason's family had just walked this path with Liz. That they wouldn't be shocked or grossed out by the brutal realities of my treatment. I learned to tie a head scarf. We had balloons and macaroni and cheese and cupcakes with candles, presents and party dresses...my hair wasn't missed.
As soon as I returned to Spokane, I had my head shaved.
I was told never go to an oncology appointment alone. Early on I learned the value of that advice. There was a Friday appointment that Jason couldn't make. Even though I was feeling physically and emotionally strong, I asked Sara to take me. I'll never forget that afternoon. The doctor was running way behind schedule. When I finally got called back, we spent some time laughing about State University rivalries with the nurse. My spirits were light. In no way anticipating the news that came next: lymph nodes under both arms tested positive for cancer. A small possibility that I've developed the same breast cancer independently on each side. But more likely, the cancer in my right breast has used the lymphatic system to travel wherever it pleased, finally settling in the left axillary nodes. I'm now considered Stage IV. Stage IV. The doctor never used the word terminal, she still hasn't. She cautioned me to not get too caught up in the staging. She explained that it allows her some more freedoms with my treatment. The greatest impact involves my follow up care. Instead of one year of herceptin, I'll never stop getting the drug. Through tears and the fog of disappointment, I tuned in and out. Treatment forever? I was so grateful to have a friend by my side, crying with me, and later, helping me process this news.
I was buoyed through treatment by the visits of family and friends. Meals to make everyday life easier. Sweet care packages. Cards. Prayers. And especially my children.
One of the wildest things about treatment was watching the physical symptoms of IBC reverse. By the time I reached (what I though would be) my last chemo in May, my breast looked normal. My PET scan following chemo was just this side of miraculous. Clear lymph nodes. A trace of cancer cells remaining in the breast. A few weeks to allow my blood cells to bounce back, and I'd be ready for surgery. I was winning. We had beat back the fire that was raging in my body.
(Photos from my "Last Day" Celebration.)