The Song that Never Ends and True Miracles
On Saturday mornings when I was a girl, with my TV cartoon options exhausted, I reluctantly watched The Shari Lewis Show which included a puppet called Lambchop. At the end of every episode, Shari and friends would sing, “This is the song that never ends,/it goes on and on, my friends/some started singing it not knowing what it was/and now they go on singing forever just because.” Repeat. Repeat.
That’s the way I’m beginning to think of my cancer, which came back near Thanksgiving 2018 (ironic!).
That fall was crazy. But as far as I knew, my cancer was gone since my scans showed no evidence of disease.
In mid-September Hurricane Florence hit Goldsboro, NC, where my parents live. My sisters and I found out that their 24/7 care had been cancelled because of the risk to the caregivers so my sister Donna and I literally held down the fort for 3 days. My poor mom was in a great deal of pain and we didn’t know why—we thought it was arthritis. My dad has dementia and doesn’t remember much of anything. Possibly because of the wild swings in barometric pressure during the storm, my lymphedema started acting up again.
After the storms subsided, I returned home to prepare for my youngest son’s wedding and guests.
The small wedding was lovely, but on October 8, my husband started having excruciating gut pain, and we ended up in the ER for 8 hours. It turned out to be a gangrenous gall bladder that wreaked all kinds of havoc. He was in the hospital for 6 days.
I knew I was tired, but that was to be expected, right? Near October 20th, I got a call from my sister who said my mom was in the hospital. No one was sure why. Dan was still in bad shape, so I thought I’ll wait a day or two before I go to NC. But on October 22, my son who had gone to see about my mom, called and said the doctors were waiting for me (the fourth sister) to get there because she was dying. Shock. An emotional wreck already, I left the next day and found that my sweet mom, surrounded by family, was unconscious and dying. It turned out she had metastatic cancer. Although she had been to many doctors, no one picked up on it. We never found out the origin of her primary tumor.
A few days later, an ambulance took her to their home, and she died quietly. I was lucky to be able to hold her hand towards the end. If you’ve lost a mother, you know there is something very primal about the grief you feel over a mom’s death. While I was dealing with my deep grief, the oncologist’s office called and said “your thyroid levels are way abnormal. They’’re 47 and we are referring you to an endocrinologist. “ I just remember feeling stunned and crying into the phone, “ My mother just died; can this wait til later?”
Life went on as I returned home. But right before Thanksgiving, as I tried on dresses for my niece’s wedding in Raleigh, I saw some small red bumps on my left breast. I mentioned to my husband and we rushed to cancer center for an ultrasound. The radiation doc said, “There’s no tumor in the tissue. Maybe it’s a rash.” I was suspicious. It didn’t look right to me, so my husband and I immediately rushed up to my oncologist’s office where she examined it. (Remember this is a day or two before Thanksgiving and the staff was trying to get to their holidays so I’m grateful the docs saw me.)
Dr. Patel, my beautiful, funny and brilliant oncologist, who keeps asking me who will play her in the movie version of my life (haha) said, “Maybe it’s a rash. Put this cream on it and see if it improves. If it doesn’t, come back on Monday.” I went to the wedding and didn’t say anything, but the rash got worse. On Monday, we went to my surgical oncologist who did a punch biopsy immediately. “I’m scared,” I said. Within 24 hours I found out my cancer had returned. Same tumor, but now on my skin. And to be precise the thing is it had never gone away. No scan except a pet scan or MRI would have picked it up and I had had neither after my all-clear ultrasound and mammogram. My children all rallied around me as I cried and panicked over the news. It had only been 6 months since I had stopped my last oral chemo (18 months of chemo, radiation, 2 surgeries and 6 cycles of xeloda.) I knew we had to act quickly so once again the amazing Doctor Patel got me an appt. at Vanderbilt so they could offer suggestions as to how to treat this aggressive tumor.
They all decided I should try the new immunotherapy drug Tcentrique which had passed its clinical trial stages and an article had just been published in The New England Journal of Medicine about its effectiveness on triple negative breast cancer. So now I had a new plan which gave me some relief, and I thought/hoped that this drug would take care of things. I would get 6 cycles of Tcentrique and Abraxane, and we’d scan again.
So the winter passed. By March, my lesions weren’t looking better so Patel ordered a scan. It turned out the Tcentrique wasn’t working, so they scheduled a mastectomy. Near the time of my surgery, they scanned again, and the tumor had grown.
May 10 my left breast was removed, which is no walk in the park, but I was glad to have it over. In about a 6 hour surgery, Dr. Midis, my surgical oncologist, and Dr. Becker, my plastics doc, removed a circumference of about 13 cm. of skin on my chest and moved my back latissimus muscle to the front. I was told later that they debated not doing the muscle/skin move because the wound was so big—they considered closing it with a vacuum seal and letting the edges heal up so the wound would be smaller and I would do the back surgery later. But eventually they agreed—"let’s not make her go through this again,” and Dr. Becker stretched the skin and sewed me up with meticulous stitches.
Honestly, when I awoke, I felt like the monster in Frankenstein with all the crisscrossing scars on my front and back.
Some wonder why I didn’t have a bilateral mastectomy or a mastectomy the first time. For several reasons. One is, why remove a healthy breast that has as much chance of breast cancer as any person without cancer? Plus I had a large gene study done, and I have no genetic predispositions for cancer. No mutations whatsoever. 85% of cancers are random, not genetically linked. Moreover my kind of cancer can come back on chest wall even with a breast removed, so even if I had a mastectomy the first time with reconstruction, it would have come back on my skin and all of that would have been wasted.
Some questions plague me: What if I hadn’t been proactive when my cancer reoccurred? It was already stage 3, a 9 out of 9 in aggressiveness, larger than before. Also I wonder what the additional, ineffective 17 chemos did to my body.
For those who say, ”You just need to think positively and pray it will go away” or “God’s got this,” I so appreciate the sentiment, but I WAS thinking positively and never dreamed it would come back. I was determined THAT was not going to be my story. I have felt the extreme love and prayers pouring out from friends and family and believe that God has been present in that love.
But for me, the true miracles? I’m still alive when 50 years ago I would have been dead with this disease. Plus, the doctors have all acted quickly when they needed to for the most part. Moreover they were able to excise the cancer and to stretch the skin/back muscle to cover the wound when they thought they couldn’t. And I’m healing well! Back to yoga and exercise.
I’m on a new plan as doctors scratch their heads over my disease progression and all of them say, “We’ve never seen a disease act this way so we’re not sure what to do.” They are giving me additional treatment because they found cancer in my blood vessels so to get the microscopic stuff they must continue to act aggressively. The good news is that the disease is still stage 3, and without treatment, I’m sure it would have spread by now. My big lessons are cancer is sneaky, and you must be your own advocate because, while the doctors have the treatments and authority, you KNOW your body better than anyone. Don’t let something suspicious slide. Get it checked out even if you hate being called a whiner. (If anything, I was too lax before about the care of my body; I pridefully thought I was in great shape, exercised regularly, I had three kids before age 30, breast-fed all of them, and rarely ate sweets.)
Here we go again as Dolly sings. After more consultations at Vanderbilt, everyone agreed, I needed 3 more toxic A&C (doxorubicin) chemo’s, maximizing my lifetime limit for the drug, followed by 5 weeks of radiation. Reconstruction is not possible.
Of course, my case is unusual. 85% of breast cancers are curable and many of them never return especially with the great follow-up drugs for hormone positive and Her2 tumors. So if this is freaking you out, don’t. It’s probably not going to happen to most who have breast cancer. I just had too many advanced stage markers and this is my song that seems to never end—at least for now.