I think I’m overdue for a writing. I’ve put it off this time around, not finding anything particularly inspirational to write about. But I guess that too is cause to write. People who go through cancer are still people. We can’t be “inspirational” all the time. And I suppose people want to know how I’m doing. Although, truthfully, very few people have really asked.
Right now I’m at a stalemate. I just finished my sixth chemotherapy treatment last week and scans I had done after the fifth showed that while the cancer hasn’t spread, it’s still there. My oncology team is pleased with that result. But there again, the reality of treatment for Stage IV cancer is that it is palliative, intended to extend life, and not to cure. Within that reality there is no end in sight for me. I will never be out of treatment. As long as my body tolerates it and it continues to show some benefit in holding back the spread of cancer, I will be in chemotherapy. But that’s not a reality I have accepted so easily. I still hope for cure, or remission, or no evidence of disease. I want to feel like I’m heading somewhere, like all of these efforts are moving me forward. I can’t imagine being in treatment the rest of my life. I don’t want to imagine it. And so it’s no wonder I feel so stuck in the mud. I have nowhere to go. I just sit and endure treatment after treatment, scheduling my life around the appointments and side effects. Dr. Patel says nine treatments (I’ve had seven so far), and then I do scans again and go back to MD Anderson to consult with Dr. Cristofanilli. I had nine treatments the first go-round. So by April of this year that will be 18 chemotherapy treatments I’ve undergone in four years of my life. I don’t think people who haven’t gone through it can even imagine it. That’s a heck of a lot of chemotherapy.
So many people have told me I “look good”. I know that’s meant as an encouragement, as a reassurance. I look at myself and I see a pale, bald, overweight, swollen, bag of cancer. I live in this body. And I know what it feels like from the inside. I am living with the constant nausea, the mouth sores, the bone pain, the headaches, the nosebleeds, the overwhelming tiredness, the sleeplessness, the muscle spasms, the awful taste in my mouth, the “hot flashes”, the swollen joints, the itching, the neuropathy, the constipation. And then there’s the fluid retention, diabetes, heart arrhythmia, and low red and white blood cell counts. But all of that doesn’t show. You can’t see it. But I feel it, day in and day out. I live it. And what few complaints I do utter usually fall on unsympathetic, deaf ears. Even people who hardly know me have apparently seen me around town and have assumed because I am still functioning that everything must be fine. What people who haven’t watched a love one die from cancer frequently misunderstand is that by the time you “look bad”, by the time your symptoms become evident to everyone, your skin is jaundiced yellow, you’re emaciated, and you can no longer do the grocery shopping or go to the bank, it’s too late. You’ve already lost the battle and no amount of hoping against death is going to change that. People don’t die of cancer. They die of organ failure caused by cancer. And I think I’m a long way from that. But I also know, having stood on the sidelines while so many women have died of Inflammatory Breast Cancer, that it is indeed a slippery slope. One turn in the wrong direction is all it takes to lose foothold, and it’s awfully hard to regain it. So there’s this constant threat, this constant reality, that at some point this carboplatin/Herceptin/taxotere cocktail I am fixing on every 21 days may stop working. There are many other chemotherapy drugs to try. But, it is a slippery slope. Until something gives I just keep rolling with it and try to expend my energy consciously and wisely. Although I have recently been accused of not having my priorities in the proper place. I just think it’s the exposure of the weak side of my strength and the misunderstanding about where our strength truly comes from. God’s Grace is sufficient.
This chemotherapy stuff is cumulative. It’s like digging a hole at a faster pace than you can climb out of it. It’s like drowning in the ocean, or being swallowed by quick sand. I imagine most people who haven’t experienced cancer treatment first hand don’t really understand that either. They can approximate it through their own inner experiences of living with physical illness. But unless we’re stricken with an incurable and debilitating disease, most of us get well and tend to forget. In fact, most people who are reading this are hardly affected by my cancer. Some are affected in varying degrees. But really, it is me, my three children, and my husband who are eating, sleeping, breathing, living cancer, no matter how hard we try not to. Even in the self-revolving worlds of my children, their lives intersect with mine on this tightly wound axis of 21 day chemotherapy cycles. We all try to maintain normalcy, to go on as if it isn’t affecting us. And it probably is a lot easier for them to forget about it than it is for me, because I can’t escape the physical reminders. I am the one going to the doctors, getting stuck with needles, getting the five hour chemotherapy infusion. But they are the ones who come home from work or school to find me completely exhausted from the couple of errands or appointments I had that day. They are the ones, because of their dependence on me, who are limited by my limitations. They are the ones who have to live with the rawness of the emotions of the moment. As lonely as I feel at times, and as frustrated as I get at the lack of sympathy I receive from my husband and children, I also know that it is they who are the most affected both in my illness and in my death. I didn’t fully appreciate what it means to be a caretaker until this past month, when Justin underwent a surgery to realign his lower jaw. Being a mother and watching my child struggle to come out of anesthesia, in pain, and unable to speak or consume vital nutrients, was hard. It gave me a glimpse of what my mother must feel watching me go through cancer treatment. But having been through over 10 surgeries in my life, I had a wealth of experience in knowing exactly what Justin needed. The role of caretaker is one I took very seriously, and I felt honored to be able to not just watch from the sidelines, but keep pace with him. It was exhausting, and thankless. And I don’t think I will ever see my husband the same. I have become keenly aware of his selfless service even in times when he too wanted to buckle under the flood of emotion. I am in awe of his strength, where mine has failed. It’s an odd circumstance that cancer both isolates and draws together. This past month others have been flung off the merry-go-round, as our circle of support grows ever smaller, and our little nuclear family clings tighter to the center. This time it has been part of our church family. To put an essay-worth of years of pain and frustration in a few words that also protect and encourage grace, I will simply sum up this experience as “disenfranchisement from the corporate church”, whatever and whomever that may be. So many changes have happened in relationships I am in, that we are in. Some have been welcomed, and some haven’t. Some have been swift, and some have taken their time.
And even in all of this I find myself being so unforgiving of myself. Only people who know me intimately know how hard I really am on myself. I feel guilty for feeling the way I feel- for being frustrated, and discouraged. I should be grateful that my body is tolerating the chemo, that I can even partake of it. I should feel blessed that the cancer spread to a place that provides me very little side effect, and that I’m not suffering in pain from tumors on my liver, or in my bones, or even worse, debilitating cognitive effects of tumor in my brain. I should count today, the only day I truly have, as a blessing. But I wonder, if I who am facing the reality of death every time I look in the mirror, am having trouble with that, how much more are people who have no understanding about living with cancer? Some days I wake up and my first thoughts are in amazement that my faith is still intact. All the adversity, all the sticks and stones, all the turbulent waters. I know that’s not me. And I do feel blessed that God has that tight a grip on me, that He doesn’t use this distancing, this isolation, this time of immense trial as a means to completely disengage me from faith. Amanda asked me today why it is I think God is “doing this to me”. She searches for a purpose, a reason for my cancer. I can’t give her one. But I did tell her that I am certain it isn’t to punish me, or that it isn’t simply because I was grossly lacking in some area. We all will have a cross to bear and who ever knows this side of the Jordan why we are given the one we are given? All we need to do is be willing, and that is hard enough. Especially when we’re beat down and are standing still in the mud, shouldering it alone. It’s almost harder just standing under its’ weight. Every aching muscle demands focus. Not to be overly dramatic- identifying with the Cross of Christ is a dramatic endeavor. Yet it’s one we’re asked to undergo with “pure joy”. I must admit I’m not full of joy at this point. And again, my natural inclination is to feel guilty about that, to feel inadequate, spiritually inept, as if I am doing this whole cancer thing wrong. But when I close my eyes and see Christ buckling under the weight of the cross (so much so that another man had to carry it for Him), I feel His resignation, the dark depth of His Divine Destiny. But I don’t feel joy. I don’t think He felt joy at that moment either. The Bible describes Jesus as “being in anguish” as He prayed just prior to His arrest (Luke 22:44). Sometimes I wonder if my Christian brothers and sisters have forgotten this, have somehow etched into their minds a tainted view of what it does mean to be a Christian. The joy to be found is in the Resurrection, which is eternal life. But we cannot partake of that fully until we have walked through the dark and haunting shadow of death. My Father-in-Law once asked me why I had Dali’s Christ of Saint John of the Cross above my fireplace when “Christ got off the cross”. Because without the sorrow, the humility, the death of the cross, we cannot fully grasp the joy of the Resurrection.
It’s almost prophetic that several years ago, not long after we moved into our home, I burned Isaiah 48:10 (“See, I have refined you, though not as silver; I have tested you in the furnace of affliction”) into a piece of cedar planking that we used to frame that same fireplace that Christ of Saint John of the Cross hangs above. I chose that verse because the whole “furnace” thing was appropriate for above the fireplace, a real life metaphor, and it was one my favorite “furnace” verses in the Bible. But really, I think that verse chose me. I think God chose me. When I sit in my living room I almost always read that verse and the depth that it has penetrated my heart is more than I ever imagined in my witty selection. Yet, we’re making plans to leave it behind- the burned wood plank, that is. After a couple months of wrangling, or perhaps praying, we’ve decided to take a leap of faith and sell our house so that we can buy a larger home about 3 miles from where we are living now. It almost seems unwise at this point to be moving, and to be moving into a larger home with a higher payment. Here I stand, knees shaking, neck aching, wanting to buckle. But if anything, this is testimony to the degree of struggle that even Al has experienced in trying to balance living and dying. Like Solomon, I rhetorically ask God aloud, “but what if I never got cancer and we came to this juncture in the road, we took the step in buying the house, and then the day after we moved in Al is killed in a car accident”? We have no guarantees. And it seems we like to create this illusion of control in our lives. Ultimately, everything we do must came from faith, because everything that doesn’t come from faith is sin. That surely doesn’t mean having the kind of faith that we stand on a train track and foolishly believe God will save us from an oncoming train. But we can’t allow the fear of an oncoming train stop us from crossing the track. At least I can’t. I still have to find a way to walk in faith. And even up until my last breath I hope that it is taken in faith. So we’re getting ready to cross several tracks. Trains are coming. That’s a given. And while they are in sight, we have no idea the speed they travel. They seem far enough away we can make it across. And so we are trusting that God isn’t going to bring them upon us so fast that we end up maimed or killed trying to make it, and if for some reason we do, then even that is by His willing. So for today, as uncertain as the future is, as tired under the weight as I am, and as immobile as it seems I am, the measure of faith I have been given is the backbone that keeps me standing. After sitting down and tapping all that out on my keyboard, it doesn’t seem so bad. I don’t feel so far out. Maybe I just needed to find my inspiration through writing this time, instead of writing about my inspiration. Tomorrow’s a new day.
And Always in His Grace,