Update/Prelude/Whatever: A month after I wrote this, Mom’s tumor markers unexpectedly shot up. When I said in the post below that she had other issues, I was saying – without really saying – that things were still wrong and we just couldn’t get them identified. It may be that we will soon have a resolute cause for the issues that still plague her. It may be that the post below is rendered incorrect, if not completely obsolete. It may be that we continue to swim upstream against a relentless current of cancer. The only thing that keeps me from now deleting this post altogether is that for a few brief days – long before the conversations detailed here, before I dared believe in the word “cured” – we had hope. We still have hope. It may very well be all we have, so we cling to it with all our might.
I have not previously blogged details of my mother-in-law’s cancer. I have written about it, of course, and maybe someday my words will be suitable for public consumption. I don’t quite know why I have hoarded the experience of her cancer, while I shamelessly share here all the other events of my life. I think perhaps the difficulty of what we have witnessed as a family, the magnitude of the diagnosis, or even the need to focus on Charolette’s health instead of my own experience of it prevented me from sharing in this outlet.
I suppose there is also the reality that the journey is not over. We have not yet been sent out through any physician’s office door with well wishes for a long and healthy life, call-us-if-you-need-us, it’s-been-great-knowing-you-now-go-forth-and-prosper. She has not yet been dismissed from their care. Her case is not yet closed. And, since my preference is that stories have a definitive outcome before I share them, so we can all enjoy the neat and tidy ending – or at the very least laugh at the crappy and chaotic aftermath – at this point Mom’s story doesn’t fit the mold.
Then, of course, there is the fact that it’s her cancer and her story – not my own. I have felt an intense need to respect her privacy in my writings. But in a way, the cancer happened to us too. Its impact has not been limited to the confines of Mom’s body. Cancer, as you know, weaves its cellular tentacles through and around healthy tissue, invasive and uninvited. I only now see how its emotional tentacles sprawled to weave themselves in and among our family members, making it our story and our experience as well.
I have wrestled a host of demons these past nine months. In October I cried and prayed and begged that our feet would not have to walk the path that lay hauntingly before us. In January I feared we were losing her altogether. In April I struggled unimaginably with doubt before “putting my hands in His side,” and relaxing into the knowledge that – whether we chose to call it miracle, successful medicine, or outright anomaly – Charolette’s cancer was gone.
Feeling like a traitor to my faith and a modern-day Doubting Thomas, I insisted on getting the pathology results before completely succumbing to tears of joy and thanksgiving. The following week, with a dread borne of experience, I became the World’s Biggest Hypocrite in the face of more chemo as I silently chastised doctors for not “believing the miracle” and releasing Mom from the grip of torturous cancer treatments. Even though I had (finally) settled into the knowledge and faith that she was cured, no doctor would use those words. That’s okay, I told myself. I know what I know. And if you think I’m stubborn, you’re right.
For any person with pancreatic cancer, the treatment plan is: 1) radiation supplemented by chemotherapy, then 2) surgery, then 3) more chemo. We knew this from the beginning. We also knew that without treatment, a person might expect to live 3 or 4 months. With treatment and surgical removal of the tumor, there is a 25% chance that the patient will be alive in five years.
That’s the gist. Now here’s the rewind: We first heard these statistics in November, three weeks following Mom’s first surgery, which was unsuccessful because her tumor turned out to be larger than expected, too intricately involved with three major arteries, and therefore deemed “massive and inoperable.” Our only hope at Charolette seeing her next birthday was tied precariously to chemo and radiation shrinking the tumor to an operable state.
Surprisingly and against many odds, it did.
Mom’s second surgery on March 17 was successful. There was no longer any tumor to speak of, much less remove. Doctors took over half of her radiated pancreas, her spleen and an adrenal gland. The pathology report on the excised tissue was perfectly clean.
Our follow-up visit with the chemo doc prepared us for six more months of chemotherapy treatments. Several people, on hearing the news of Charolette’s surgery and the clean pathology report that followed, have asked why she still has to have six more months of chemo. Believe me, I asked the same thing.
Essentially, Mom had completed two of the three steps in the treatment plan. There is not enough documented precedence – so few people whose pancreatic cancer is obliterated to this degree – for the doctors to recommend anything other than proceeding with the original plan.
I get it, really I do. I understand that they just aren’t quite sure what to do with her, since she pulled a mind-scrambler on them and came up cancer-free before the end of the prescribed regimen of treatment. And without precedence, without cases upon cases of successful mid-treatment cures before hers, they are unwilling to release her without following the plan to the end.
This is where my will conflicts so heavily with that of modern medicine and the cosmic forces that are more complex than my little mind can fathom. But such is life. So I give myself an attitude adjustment, focus on what is right for Mom and what she wants, and move forward. She is alive today and I can do nothing but support her desire to stay the course. And so I do just that.
Even though the cancer is gone, Mom has struggled with other issues as her body adjusts to functioning with only a portion of her pancreas. As we visited with Mom’s GI doctor last week, I shared with him what I understood of her treatment and recovery. He asked me what her CA19-9 levels were prior to surgery and now.
“I have no idea,” I confessed. “You just started speaking another language.”
The CA19-9 marker, which indicates tumor growth in the pancreas, had not been discussed in any memorable way by any other doctors. The GI doc told me to ask the chemo doc about it, just out of curiosity.
And so, at Monday’s appointment with Dr. V. I brought up the subject of Mom’s CA19-9 levels. “Do you monitor those?” I asked.
“Yes, we look at those once a month,” he said as he flipped a page in Mom’s chart and paused. “Oh, wait. No, not yours,” he said directly to Mom. “We don’t monitor them as closely once you’re cured.”
There it was. He said the C-word. “Cured.” I chomped down on that word like a Rottweiler on the mailman’s leg. Cured. No doctor has wanted to say that to us yet. Even if he slipped, he said it. He said it and I believe it and I’m going to hold onto that spark of reassurance for the rest of my days.
“Since you brought it up, we will check them for you next week, okay?” Dr. V. looked at me with raised eyebrows and I realized that a manic smile must be stretching across my face.
“That’d be great,” I said, hoping I wasn’t scaring him. I really do like Dr. V., despite my inherent distrust of conventional medicine and my decade-old belief that chemotherapy is Lucifer in liquid form. All of the physicians who have guided us along this journey have been compassionate, caring and sincere individuals whom I have grown to respect immensely. Their hearts are true and their priority, like mine, is taking care of Mom.
So we continue with the care and the treatment and – if we may be so bold – the cure. We ask that our friends continue with the prayers. And we wait to see where this journey will lead us. After all, we walk by faith and not by sight. Well, most people walk; I seem to stumble along.