“Sometimes what happens to us that is blessing, can move beyond us to others, if we tell the story. Don’t forget. Tell the blessing stories of your own lives and with love..
~ Dr. Clarissa Pinkola Estes
Well, a year (plus a couple days) has passed by since I last wrote. At my last writing I was a couple weeks away from my scheduled surgery, which removed half my stomach in hopes of providing me a tool to lose the excess 150 pounds I had accumulated in the past ten years. The surgery was not easy. Initially I was reluctant to go through with it because it is a major surgery. I had already been through so much. But emotionally, I also felt like I was admitting defeat, taking the “easy way” out. I felt like a moral failure because I didn’t have the self-control to endure the lifestyle changes required to lose that amount of weight. But a year later I can attest that this hasn’t been easy by any means. The recovery was rough, and I had moments when I felt like I was never going to be able to enjoy food again. I have also had to work hard at making good food choices, as my very small stomach only allows a certain amount of food and liquid to fit in. Because of the limited space, I’ve had to consider the nutritional density of everything I am consuming. But, I am quickly coming up on my one year surger-versary. The slow rate at which I have lost the weight reaffirms for me that this weight loss is probably not something I could have achieved without having surgery. As of today, I have lost over 90 pounds this past year. I know that seems like a lot, and it is a lot. But 90 pounds in 12 months is 7.5 pound per month average- not really a lot when you see how little I eat. I still have 60 pounds to go, and am in a very long stall, but those 90 pounds have made a significant difference in many areas of my life. My c-reactive protein levels are within normal range, my chemotherapy dose has decreased significantly (because it is weight dependent), I am no longer taking medication to control my hypertension, and my mobility has improved significantly. What hasn’t improved is my fibromyalgia (in spite of my lower c-reactive protein levels), the chronic fatigue, or the neuropathy. These are long-term side effect of all the chemotherapy I have had. My lymphedema, which is also a side effect of the surgical treatment for cancer, has improved a lot. I still have to manage it, and still have swelling, but it’s nowhere near to the degree or as painful as it was when I was 90 pounds heavier. So although I am not at goal within the year’s end, as I had hoped I would be, I am very happy with the weight I have lost and do not regret the surgery.
This time last year I was contemplating the changes that my surgery would bring about, and was somewhat apprehensive about the emotional work it was going to beg of me. I have been particularly on guard, looking for signs of addiction transfer. When I went through the pre-surgical psychological evaluation it was one of the things the psychologist talked about, especially since I have a past history of drug and alcohol abuse, and smoking. I knew I wasn’t addicted to food in the same sense as I was addicted to cigarettes, but I also knew painfully well that I did my share of “stress eating” and often consumed unhealthy foods during times of heightened stress. So I was nervous about what my response to stress would be now that I could not “stress eat”. But I’ve actually found, a year later, that it’s not as difficult to manage my stress as I thought it would be. In that regard, nothing has changed really. I still have stress, and lots of it. I still work through it in the same ways I did before. I just don’t delay the process by numbing out (really making myself temporarily comatose) with food first. And I haven’t turned to some other substance to replace the food. But some things have changed through this process- I have begun to feel my bones!
I mean that literally, and figuratively. The literal part is pretty obvious. I have read stories of people who experienced such dramatic weight loss that they felt “lumps”, which sent them frantically to the doctor, only to find out those were their bones they were feeling for the first time. Before cancer I was still thin enough that I could feel my bones poking through, not hidden under layers of fat, so I know what that feels like. It actually feels nice to feel “bony” again- it’s been too long since I’ve had that feeling. But feeling my bones has been more than skin deep. The figurative part comes from some recent listening to Dr. Clarissa Pinkola Estes. A dear friend passed on The Joyous Body series to me, which I have been listening, and re-listening to. I started off listening with a great degree of skepticism, because although Dr. E is a Catholic, she is truly a Jungian. She often talks about deep spiritual things, but her presentation and interpretation is esoteric, and doesn’t even slightly follow along a Biblical path. That’s not to say her ideas are not Biblical- they just don’t lead the blind in that direction. But listening, and listening again, and sometimes again, has really allowed some of what she has put forth to resonate with me, and I think in some ways to give me some grounding- help me to find my bones. One aspect of this is not a new concept: breast cancer is not about the dainty, pink, cute, little ribbon. That trendy marketing icon has come to represent (or rather, misrepresent) a disease that is not cute, or pretty, or dainty. The fight that it begs, the warrior that it beckons, is a fierce, wild, and formidable opponent. She has a passion for life that is everything but passive, especially if she has children to fight for, live for, to care for, to raise up.
This past year I had an experience when I went to see my therapist, and as I sat in the waiting room, I watched out of the wall of windows this tiny baby bird flailing about in the grass. It was obviously much too young to be out of the nest. It instinctually would get real close to the brick pillar and tuck itself in when people walked by. But as soon as there were no seen potential predators, it would wildly chirp and flail around some more. I felt so sad and helpless about the obvious eventual demise of this tiny creature. I told my therapist about it, and being the tender and kind-hearted mama that she is, she found an empty shoe box and scooped it up. She told me that she had made several attempts to nurse found baby birds over the years, but none were ever successful, as wild baby birds are very hard to keep alive. She was going to take it home and attempt to feed it infant formula out of a dropper. When I came back for my next appointment, the first thing I asked her was how the baby bird had done. She told me that not only had it died, two of its siblings also showed up in the front grass area, in the same condition. Two different women took these two home, with intent to try to nurse the baby birds to maturity, but those two also died. It is obvious to me that something had to have happened to the mother bird and she most likely did not return to the nest, causing the babies to instinctually attempt their first flights from the nest in order to search for food. They were obviously old enough to not be so helpless that they just died in the nest, but still too young to possess any of the skill or attributes they would need to fend for themselves. What a very tragic situation to be in! Without their mothers, immature babies of any species die. I felt sad about that, but I also couldn’t resist the irony of there being three birds when I have three children, and have been going through some adjustments as they age and leave the nest I created for them. At first I surmised that when birds fly out too early, the result for them is fatal, and I thought about that truth in terms of my own children. But then when I came back and learned that two more suffered the same fate, it became obvious that there was a reason all the babies took flight earlier than they were supposed to- it wasn’t just a singular rebel in the group of siblings. And I contemplated that lesson as well. Life is cruel. Nature is cruel. When I was first dealing with my recurrence, the grief and sadness for my children was total. It was overwhelming. Even disabling at moments. I just couldn’t imagine having to abandon them when they had already suffered the abandonment of their biological father. And I remember this being put into context for me by other people wanting to minister to me. “Look at the birds of the air, that they do not sow, nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not worth much more than they?” (Mat 6:26 NASB). In other words, God will take care of my children if I should die. But clearly, there are situations when baby birds starve to death even when surrogate mothers attempt to look after them. I think knowing that, not having faith that my children would be ok, served as a strong motivation for me to fight cancer with everything I had. It gave me an endurance I didn’t know I had, and never wanted to know that I had. The flip side of that is that God already knew this. He created me. He has been the Author and Perfecter of my faith. So my lack of faith has been by His design too. Without that I may have welcomed the prospect of coming eternally into His presence far too easily. I am so grateful for His mercy on me, faithless that I am, but even more that He can use my weakness, my lack of faith, for His glory. All I have to do is be willing to be honest, to be transparent about how truly non-inspirational I am. Which is why I write. It really isn’t for myself. I labor with it. Sometimes I am embarrassed by all the whining, and thrashing about that I do. That’s even more clear to me when sister cancer survivors point that out to me- that I have a lot to be grateful for, as if I never learned a thing from cancer. Indeed, I do. Indeed, I did.
My first grandchild is due to be born this month- a girl. Her name is Maddison. So much life to look forward to, and this is a moment I never believed I would see come to pass. I expect, am hoping, to be fully present, grasping onto every breath of life I have been given, as I watch in an instant my own son become a father. I recently read a quote on a fellow survivor’s Facebook page about being selfish with one’s life- wanting to be selfish with having more days of life. It reminds me of the prayer of Hezekiah (Isaiah 38). I have certainly prayed that prayer. And although my friend got a lot of positive feedback about how this type of “selfishness” is a good thing, the obviousness of the pride of life really struck a chord with me. There have been so many times when I believed that having gone through cancer entitled me to things- seats in the front row of my son’s football game, scholarships awarded to my daughter to help pay for her tuition, etc. I think these thoughts really come out of this knowing- knowing that life is short, knowing that I only have one stab at it. And it sometimes causes me to want to knock people over, out of my way, so that I can participate in full Technicolor with whatever it is at the moment. It’s kind of like bulimia, I suppose, in the sense of being compelled to gorge. Or maybe more like the reaction to food after a long period of starvation. I am sure this is why some people who have suffered great losses become hoarders. When you consider that you actually might not have the opportunity to be present during your son’s last high school football game of his life, the fact that you are alive to actually attend puts you in a place where you don’t want to settle for the middle of the bleachers where everyone is getting up and down, blocking your view. So this deeper sense of appreciation, although it might seem absent amidst all my complaining, is truly there and at times can cause me some problems. It has made me more self-centered, less patient at times. I don’t have time for pettiness, for distraction, for unforgiveness, for people in my way. But I’m not so sure that’s entirely a bad thing. I experienced the better part of my life getting the parental message that I am a self-centered person. So much so that it actually turned me into someone who had no sense of identity of her own. I don’t mean sense of accomplishment. I’ve done plenty of that. But all of “that” was for the benefit of my children, my family. I rarely, if ever, indulged in something for the sheer sake of it being of interest to me. Every resource I had was metered out according to how it was going to benefit the greater good. If I had my way about it, I would have pursued arts, or certainly something far more creative than social work. But that didn’t put food on the table. Compromise. Compromise. Compromise. You do it enough and eventually you lose your sense of who you are. Eventually, you allow people to block your view of the last game of your son’s high school football experience, because to do otherwise would just be self-serving. And so, I am sure some deeper work is occurring through this cancer experience. I have seen some fruit of that in that although I have always tried to live authentically, before cancer I still had this notion that I always had to be nice, polite, selfless- even when I didn’t feel like that. These characteristics are virtuous and lady-like. Well, and they are Godly too. I don’t think we should aspire to be anything opposed to these things. And yet, time and again we see Jesus, our model for Godliness, calling the kettle black, speaking some hard truths, being firm and uncompromising, and not wasting time getting caught up on matters that really were a distraction. He was more concerned with truth than with being nice. Yet, not for a second did He stop being love. And so, this past year I have seen that change at work in me, this thickening of my skin, this finding of my bones. I am standing a little taller, my vertebrae are a little stiffer. While the cancer has given me a deeper sense of what is important, this emotional process since my surgery has given me more conviction to live honestly, and less patience for people who themselves are truly self-centered. I know that sounds so unmerciful, especially in a context of our Great God, who has mercies that extend beyond any human comprehension, and whom has been so merciful to me. But I don’t think this really has to do with other people or even how I respond to them as much as it has to do with me coming into myself, finding my bones. This past year I have felt a shift, a clearer perspective than I have had in a very long time on where I am and need to be going. This process that I am experiencing, it’s really the same kind of process and sort of awakening (or perhaps temporary insanity) that comes out of a “mid-life crisis” or the “empty nest syndrome.” It’s a re-defining. Two of my children have left the nest. The third is growing flight feathers. I am about to be a grandmother. For the first time ever in my life I am allowed the luxury of contemplating what I want to do in life with the resources I have, and without the obligations that come from parental responsibilities. I have been a mother since I was 16 years old. I have never known adult life without the responsibilities of being a mother. Apart from that, who am I? And what purpose is there in life for me apart from being responsible for the three human beings that I birthed and undertook to raise? Listening to The Joyous Body has really helped to give me a grounding on all this floundering, this flopping about that I’ve felt like I’ve been doing the past few years. So this past year has been a quiet, interior, exploration of myself, and so in that sense has been self-centered, self indulgent. So what? I am throwing off the parental shaming that comes with admitting that, and am learning to appreciate it, to even embrace it to the degree that it is a part of the process towards healing. Listening to The Joyous Body has helped me to label it, but also to recognize the developmental normalcy of my human experience.
A major impetus for this “mid-life crisis” has not just been children taking flight from the nest, but also the pain of unmet expectations. The dark side of self indulgence is it leaves us empty-handed, discontented. Some of this has been perpetuated by my children. I know I’m far from a model mother, but I’ve given everything I have to my children, even enduring this nagging thorn in my side for their sake. I wrote this time last year about that tinge of pain when our children don’t immediately “rise up and call us blessed.” In April my oldest son returned from his year-long deployment in Afghanistan. We drove out to Texas to see him come home, and at 3am, I was able to wrap my mama arms around him with utter relief and thankfulness. In May he got leave, and he and my daughter-in-law drove out to California. But when it came time for them to leave to go back to Texas, he left without giving me an opportunity to give him a hug goodbye. Yes, expectations. Yes, those we love let us down. I’m not going to lie- I was really hurt by that, especially after so much that we had done for both my son and daughter-in-law. Not knowing how long it would be before I would see my son again, I couldn’t help but wonder if his lack of regard for giving me a heartfelt squeeze goodbye was an indication of what he really felt about me. Having gone through so much with cancer treatment, the realization of how short and fleeting life is just makes those goodbyes all the more important to me- it’s that gorging factor. Every goodbye, even if it’s seeing my husband off for a work trip to Los Angeles, I have this gnawing thought that it could be the last. So I am especially mindful to let those around me know exactly how I feel about them. I would like to hope that my children, who grew up in the shadow of cancer, would also have a grasp on that more than most. But I haven’t clearly seen that to be the case. And I know I pointed out my son here, but this single incident is just that. It simply illustrates an experience that I am sure all families have. The truth is, it isn’t just my son or just this single incident. It’s been all my children. It’s been my husband at times. It’s painfully been a deteriorated relationship with my mother. It’s been the people at church, even my fellow cancer survivors at times. I am certain that I have failed to meet the expectations of those who love me equally as often. So it is the human condition. But in some curious way, this reality of my own mortality, of this fleeting life, has catapulted me into this search for a specific meaning, and while it has allowed me to value my relationships so much more, the fact is, even in that there are these self-indulgent expectations that leave me hungry. So while cancer has given me this gift of valuing life more fully, of appreciating things more deeply, out of this also came this sort of self-centered sense of entitlement that has left me floundering and discontent for some time.
I suspect, no, I know that at the root of this is spiritual depravity. Reflecting back on those baby birds- God allowed them to die. Not in some passive, permissive sense as if He didn’t know it was going to happen. He created them, knit them together, all the while knowing they would fly out too early to survive. So He doesn’t always “take care” in the ways we imagine He should. Unmet expectations. I’m starting to notice a theme here. I am certain that God afflicted me with cancer for a purpose of healing of a spiritual and emotional kind, a kind of healing that is irrespective of physical death. And maybe not even just for me alone. This cancer has effected those closest to me in ways that just have not been revealed yet, and has had far-reaching effects, impacting people I have not even met. I recently listened to a couple of sermons by John Piper (something I am trying to do while I walk on the treadmill). He spoke on John 9 and 11, and in the former was sharing the story of the blind man. Yes, God can instantly heal, and does so for His glory. But, sometimes He does not heal the flesh so that a deeper healing can occur, and not necessarily in the person who is afflicted. The story of Lazarus in John 11 is similar in that Jesus allowed Lazarus to die, much to the grief of Lazarus’ sisters, Mary and Martha. He allowed Mary and Martha to endure the grief, and even says that He was glad for their sakes (for the disciple’s faith) that He was not there to heal Lazarus before he died. And so too, this thorn in my side has a purpose beyond anything I can comprehend. This isn’t an epiphany. I knew from the moment of that phone call from my surgeon in May 2003, telling me that the small amount of fluidous tissue he had extracted from my lymph node contained cancer, that God had a purpose. And I knew my response was supposed to be joy- that He would choose me, that He would love me so much to not leave me in the spiritual state I was in, but wanted to refine me that much more through some very fiery furnaces. Over the years of treatment I have certainly had moments when I was in awe. Like Job, or like the Psalmist, David, I would stand in amazement that God was so mindful of me that He would afflict me with such a disease. I don’t think I ever lost faith, or hope in Him, even if I doubted I would be physically healed or that my children would be cared for. Yes, Job 13:15 (“Though He slay me, yet will I trust in Him”) was carved tenderly and slowly into my heart with a painfully dull, thorny, cancerous instrument by an abundantly merciful God- a God who always maintained a tight grip on my heart, squeezing even harder during those moments when I felt utterly forsaken. So I never doubted His sovereignty over my affliction- not even for a moment. But to truly be grateful for it? To experience joy? When you’re so sick from chemotherapy every waking minute is spent on the verge of vomiting, when you’re perilously close to death because a blood clot is blocking your jugular vein and has broken off supply of oxygen from your lungs, when you have barium shoved into your colon so they can see better in scans, or have to drink a gallon of stuff intended to hose you out, leaving you squeaky clean for insertion of their cameras, it’s just not human nature to feel joyful about it. We are literally born with our fists clenched, flailing about. It’s in our nature. And while I have given all the glory, or shall I say credit to God, I have to be honest and admit that I’ve “cried mercy” too many times in the past nearly nine years. I’ve committed spiritual suicide over and over. I’ve stopped short of calvary, and have fallen under the weight of the cross, crying out to God to not make me go the whole way. It’s not that I’m afraid of death, death of my body or of my ego. I’m just exhausted. This life has been tiring, the trials relentless. It’s not death I want to escape- it’s pain and exhaustion. And so it has become clear to me this past year that what is missing, what is incomplete, is joy. “Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing. But if any of you lacks wisdom, let him ask of God, who gives to all generously and without reproach, and it will be given to him” (James 1:2-5). Two things are interesting about this passage and its revelation to me right now. First, up until about a month ago, my son and daughter-in-law had not yet chosen a name for the baby. My DIL said she likes names that end with the “e” sound, and so in identifying numerous names that end with that, one that really stood out to me was Sophie, or Sophia. I felt immediately endeared to that name. It’s not the name that they chose for the baby, so I didn’t think about it again. But as I pondered this passage in James recently, and looked at the original Greek the passage was written in, the connection became clear: the Greek for the word that was translated as “wisdom” in James 1:5 is sophia. No wonder I was so endeared to that name! This is just one of those little signs God sometimes likes to leave, reminding me that He is guiding my journey. The second thing that really resonates with me is that the context is experiencing joy in trials because trials produce something of value- endurance. And the result of endurance is being complete, lacking nothing. We should be joyful about that! The very next sentence: But if you lack something, i.e., wisdom, ask God. So the being complete and not lacking is directly tied to wisdom. Listening to The Joyous Body I have grasped a stronger picture of what it means to be a wise woman, a grandmother, a middle aged woman. I have been able to become more consciously aware of my “bones”, of how they are knit together. So I would have to say that while I have felt them for the first time in a long time, I am not yet feeling that they are altogether whole. This is a process, and I am able to see more clearly where I am and where I am going in that, but I am not completely there yet. I am so ready to embrace a more joyful, wiser, more creative, more fluid, more surrendered, more at peace, bonier, and lighter version of myself though!
In the meantime I am still in the trenches, where I expect I will remain. I will just have to learn to be content with all that I am in that. It’s truly remarkable that I am surviving in that small group of 5% of those with metastatic inflammatory breast cancer. So many sisters have passed in the nine years that I have been enduring this that I have almost become apathetic to it. I used to cry, mourning the loss of each one. This cancer truly is a thorn in my side. I continue to go every 3 weeks to the cancer center for infusion. And then all the time in between is spent with regular doctor’s visits too- cardiology, rheumatology, gastroenterology. Scans, blood tests. It is at least a part-time job managing it all. I was recently questioned as to whether the Herceptin infusion that I receive is even chemotherapy. And there are women who have been through treatment who have also rhetorically asked, “it’s just Herceptin, isn’t it?” Yes. No, this isn’t the kind of drug that kills life. A lot of people outside of the cancer treatment world may not realize this, but a good number of people who die while in active cancer treatment aren’t dying from the cancer- they’re dying from the effects of the treatment. Yes, cancer treatment does kill people. And it also causes cancer, if you can wrap your head around that. But no, this drug I have been infused with the past five years does not destroy every rapidly dividing cell within the body. It does discriminate. But neither does it simply go after cancer cells. It specifically targets cells that have a very unique receptor on them. But there are more cells than just cancer cells that have that receptor. Thankfully, not the cells lining the digestive system, or the ones that give us hair and nails. But other cells, like those that make up the interior lining of the heart are affected by this tri-weekly chemical. And, the very presence of a foreign chemical itself in the bloodstream, regardless of its intended purpose, is going to cause physiological responses of the immune system, and every other system. And then there’s the psychological effect. It’s huge. It has an enormous impact. I am tethered. I am bound. Every three weeks. I live my life in three week chunks. And there’s no escape in sight. There’s no light at the end of the tunnel, no celebration to mark the finish line. This. Just. Is. My. Life. Now. So to say that it’s not really chemotherapy, or that it’s just Herceptin is really trivializing the emotional impact of being in “palliative care”. I am grateful it’s not the “hard stuff”. But I’m pretty sure if I was still getting that aggressive chemotherapy that I’ve had 19 times already, I wouldn’t be surviving- the treatment would have done me in a long time ago. I’ve been in this “endurance” phase of treatment since 2007- a long time now. And I haven’t delayed or missed a single treatment since. A very long haul. But I just got permission this last treatment to skip the next two treatments, as I will be in Texas for the birth of my granddaughter. It will truly be a remarkable time for me, made all the more remarkable by the loosening of the IV line. I will see my oncologist for my six month check-up when I return in March. At my last scans in September, things were looking good- still no evidence of disease. I have gone from a six month scan cycle to a 12 month now, which means I won’t get scans again until next September. I am ok with that- all that exposure to the radiation from the machines isn’t good for a person. But even though I am on auto-pilot, this is a long-term management of what is considered a chronic and terminal illness. I’m not complaining- there are so many women I know right now who are fighting active metastatic disease, or are at the end of the line and are waiting out their days. I am nearly five years from that hard chemo and as much as I do complain about the treatment, I am grateful for it. At least I am able to do something. I can’t imagine how difficult it would be to just sit and wait for reoccurrence after reoccurrence, back into treatment time and again. I guess it would sort of be like the difference between a series of 500 meter hurdle races and a 40 mile marathon. I’m exhausted, but I’m still in the race. But this next year I am anticipating some big changes in many areas. I am obviously gaining some clarity, so I hope this results in a breakthrough that serves to either settle me, or get me moving in some direction, but content either way. I am about to adopt a new role: grandma. I turn 40 years old late this year. We’re planning a move, and are expecting some other changes as well. And who knows, if Social Security has their way, I may be forced to go back to work? And if I do lose my Medicare, that may put an end to treatment for me anyway? So this should prove to be an interesting year!