It’s been well over a year since I last took the time to sit down and write about my experience with cancer. Obviously the pace of my writing has significantly slowed since the beginning of my cancer experience. In part it’s because it seems like a repetition of the same themes, thoughts, and feelings. But it’s not like I don’t have an ongoing dialog along this cancer journey- in fact, I am constantly making mental notes about the things that cross my mind and are suitable material for this project. Really the biggest reason for my silence is a lack of time. It’s so hard to believe that I’m actually busier now, have less free time now, than I did when I worked full-time. But, as I wrote over a year ago, a large part of that is my fault- I’ve been cluttering up my life with obligations. This past year has been a difficult one for me, as I continue to have this sense of being unsettled. It’s not directly spiritual. Everything I’ve read suggests that adults who become disabled go through a process in accepting their new limitations. I knew when I quit work back in late 2006 that as much of a thorn in the side as it is to work, it would be even harder for me not to. I’ve had to let go of a lot of things since then.
I started college at 16 years old and didn’t look back. I ran hard and fast and by 24 I not only had three children, but a Master’s degree and a budding career. So during those years when most adolescents are wrestling with defining who they are, I was busy being a mom, a wife, a student, a responsible adult. I basically grew into myself through learning to define myself by my adult responsibilities. I’ve never really known myself apart from the roles and responsibilities I assumed in life. So when the career/ministry ones got stripped away because of cancer, I knew I was going to face some challenges in interior re-decorating. And here I am over 3 years since my metastatic recurrence, with no clearer direction or purpose. I have been floundering. I originally started back in school a year and a half ago, with hopes of getting a nursing degree. There is very little part-time social work, and it doesn’t pay well. Nursing allows one to work much fewer hours for much more money. But the reality of the physical demands that a nursing career requires (i.e., 12 hour shifts) make that nearly unattainable. While I only lacked a few pre-requisites to meet those requirements for a nursing program, it’s taken me over a year and half to even get some of them under my belt. I start on chemistry next week, and will still need microbiology and pathophysiology. But as it is I can only tolerate taking two classes at a time, and never two hard sciences at a time. So I take one of the hard classes with something a bit easier, and more enjoyable. And while I have enjoyed learning about the human body, the difficulty of the material and the classes themselves makes it rather unenjoyable. Yet I continue on. I think it’s just important to me to be able to say that I’ve met all the course requirements for entrance into a nursing program. But these are expectations I put on myself. I justify it because going to school at least part-time allows me to stave off repaying my student loans (an expense we don’t need right now), and with Al and I both in school, it just might benefit Amanda as she applies for financial aid. She starts college in the Fall. Besides, I don’t know how to not be striving towards something. I think I’ve arrived at an existential crossroad, and by the time I get time to sit down and write again, I am hoping a breakthrough of some sort will have happened. I’ve also registered for a midwifery program this past year. I’ve had a desire to be a midwife for about 18 years now, and I had hoped that because my children are growing up and I don’t have the pressure to work a full-time job I could offer myself in that sort of capacity. But that requires an apprenticeship, and my geographic location is a big obstacle to that. I’ve made attempts to work out an apprenticeship with a local midwife, but for whatever reason that door just isn’t opening. So I am finding that I’m not really concentrating as much time on that as I’d hoped. I took my first art class last semester and I really enjoyed it. I’ve secretly considered majoring in art, even before having taken that class. I enjoy the zen of art and think I have a creative mind. I already have an entire collection of pieces in my head. I just lack the technical skills to create anything worthwhile. But majoring in art seems so selfish to me. There’s no career goal that comes out of it. While some people make careers out of being creative, having to make money at it would take the pleasure of it away for me. I guess by majoring in nursing I am telling myself there’s a long-term goal that benefits the entire family. With art it just seems like it would take my time away from the family, but with no long-term goal. I’ve never been very good at taking care of myself. Besides, I still have neuropathy and lymphedema in both my hands, which makes it difficult to use any art tools on an ongoing basis. So I have been feeling like I’m forcing things into my life if only to pretend I am creating some sort of purpose for myself. While I would have plenty to do even if I wasn’t taking classes at the community college, none of it feels particularly meaningful. Of course without me doing what I do the kids would starve, bill collectors would have the phone ringing off the hook, and mold would overtake the refrigerator, right? These are all things that somehow would get done even if I wasn’t around. Maybe I just need to learn to be more zen about even the mundane things? I feel like I’m hurrying through life just to get back to ‘the list’ so I can check stuff off of it, and add things on that I know I’m going to forget if I don’t. Sometimes I laugh at my own ridiculousness- I mean, if not writing it down means I will forget it, is it that important to begin with?
But the chemotherapy has taken a toll on my cognitive functioning as well. If I don’t write stuff down I do forget it. When I talk about my frustration with this some people laugh and call that “getting older”. But I just turned 37 years old. The amount of decline in my memory is so noticeable that sometimes it disables me entirely. I have episodes when I can’t even form a logical sentence. I know what I want to say, but it comes out jumbled. Or I’ll forget what I’m doing right in the middle of doing it. I know we all have those moments. But I have a lot more of them than I ever did. It’s frustrating to read a paragraph and totally forget what I just read. And sometime I watch a movie and forget what it was about, or even that I had watched it at all. When too many of these episodes happen in too short a time frame I’ll have an emotional breakdown and just cry. It feels so frustrating. I think it’s hard for people to understand these things apart from their own experiences. Al will tease me about “chemobrain” or suggest that I have “selective memory loss”, and I know he doesn’t mean to be insensitive, but I don’t think he lives it like I live it. Most of the time I can just laugh it off, and I am so grateful to have a husband who always puts that sort of spin on things. But sometimes it is overwhelming. I have a lot of complaints about the long term side effects of cancer treatment. Fatigue is probably the most disabling of them all. While going to school allows a somewhat flexible schedule, spending 12 hours on a nursing shift is just not physically possible for me. Besides the unseen effects of cancer treatment, there are the obvious external ones too- like the weight gain and the thinned hair (alopecia). I did finally confirm that the hair loss is from the lack of hormones, and not a long term effect of the chemotherapy. My body certainly didn’t appreciate losing its’ uterus and ovaries at 33 years old. There’s not much I can do about that. But it’s a daily struggle to accept these things. And I know people mean well. They either don’t know what to say, or feel compelled to say something “positive”. So at my acknowledgements of all that cancer has taken from me, I get the usual response of, “well at least you’re alive”. True. But hearing that over and over, I begin to doubt the legitimacy of my own grief. All those feelings of sadness and loss get trumped in the face of death, as if it’s trivial to even have vain thoughts. I should be able to look in the mirror and just feel grateful I am alive instead of feeling sad because I am missing things that make me feel feminine and attractive. Does it make me a bad person, an ungrateful person, because I don’t always feel grateful to be surviving cancer? Or, perhaps more importantly, because I am grieving the missing parts of my physical self does that mean that cancer has not changed my inner being? I think perhaps more than most I understand, and live daily with the conscious awareness of the shadow of death that I am under. Recently I was sitting in my car in the parking lot at PetSmart and I saw an elderly couple holding hands as they walked into the store together. I used to have that vision for Al and I, but since cancer I see scenarios like that and can only wonder to myself if I will live long enough to spend elderly years with my husband. (Al and I just celebrated our 10th wedding anniversary last April, and we renewed our vows in Las Vegas. Thinking back to our 5th anniversary when we renewed our vows in Three Rivers, I remember being in a very different place then than I am now) (http://ladyminusbreasts.3three3.org/?p=112). I know what life is, what death is. And I am grateful to be alive. By all accounts I am a walking miracle. Last May was the six year anniversary of my cancer diagnosis. Six years. That doesn’t slip past me, even though my family doesn’t even acknowledge the date. But I’d like to think that other women who have gone through similar things have felt the way I feel about their bodies. I recently watched My Sister’s Keeper. Boy, did I cry through that entire movie! In one scene the daughter with cancer, gaunt, yellowish, dark circles under her eyes, and with no hair, challenges her mother when her mother tells her how beautiful she looks. She really looks sick. But more importantly, she feels sick, and unattractive. I know I am almost three years out from that sick look, but I feel more unattractive than I did then. Cancer has taken a lot from me. And I’m finding that it’s just not something I can freely talk about- not because I can’t talk about it, but because people generally don’t respond in inviting ways. Maybe it is vain and unimportant. I am more than my body. And God finds it far more valuable that we possess inner beauty. Certainly on my death bed I am not going to be as concerned about how I look, either inside or out. But I am far from that. I am not trying to learn to die at the moment (literally, not spiritually- although one could argue they are the same). It’s hard to work out the sense of loss when the feelings themselves never get validated. We all look in the mirror every morning and go through routines to beautify ourselves, make ourselves externally presentable to the outside world. Sometimes over-spiritualizing things is a way to push away the emotions that define our human experiences. But how do we find God through denying our humanness?
I’m still trying to define the purpose of my cancer for myself. I have had too many people tell me that they have been personally blessed through my trial to deny that God’s Hand is in it. But I struggle to find the purpose for myself. I suppose in some ways this is selfish too- sometimes God calls us to things for purposes beyond ourselves. But was God’s call to Jonah to preach to Nineveh for the Ninevites’ benefit, or for Jonah’s benefit? Perhaps it was both. And what about Job’s trials? Or Joseph’s trials? Or Paul’s? Time and again we come to see that the most painful of trials are used to shape individuals, and not just those around them. That’s not to say that cancer hasn’t shaped me, changed me. I just can’t seem to define it as the singular purpose for me. But lately it’s been difficult for me to even see the fruits in those around me. I guess my faulty expectation is that enduring cancer would exempt me from the ordinary trials of family life- that somehow it would have such a significant effect on my children that they would rise above their own developmental potholes. I’ve successfully launched one child. Justin’s been making his own life for over two years now. This past year, in April, he got married. While Al and I both think that he is too young, we also recognize that when you face your own mortality through impending deployment to hostile territories, you tend to live life on fast-forward. So we embrace all the good that comes when your child gets married (such as a new daughter-in-law). The difficult part as a mother is the change in my role. When Justin gets off the plane after returning from deployment (he leaves for Afghanistan in April), it will be his wife who rightfully throws her arms around him first. For the first time I can truly see what it might be like for my own mother, who has had to sit on the sidelines as I go through my cancer experiences. It’s not an easy role to take, even as I find it impossible to imagine my husband taking a backseat to my mother. Now my own son is a husband. Yet at the same time there is a sense of joy that comes from seeing your child mature and make adult decisions. But we’re not in the clear yet. Justin is still at a place where he thinks that his challenges in the Army are much harder than any challenges that Al and I have faced. Oh how I remember that uphill climb of the 20’s! Rather than using his experiences to enrich his sense of empathy, he is continuing to use them to individuate himself. Al and I recently watched Brothers at War, a documentary about Soldiers in the Iraq war. The younger brother reminded me a lot of Justin- no matter what the oldest brother (the filmmaker) tried to do to stay close to his younger brother, the younger brother kept him at a distance by believing that his experiences as an Iraq war veteran were unrelatable to ‘civilians’. I think in a sense, unless you do have a frame of reference, it is difficult to relate, to truly empathize. You run out of things to talk about, and the experiences that separate you become impassable canyons. You have to strive to find a different common ground, such as faith. But ironically, I also really related to the younger brother’s experiences of what it was like to be in a combat zone and then come back to his cushy American life. The contrast of experiences and emotions is overwhelming. He talked about coming home and then being in the grocery store, and how difficult it was to hear people complain about the most trivial things. That experience is very much like the one I wrote that I related to in Band of Brothers (http://ladyminusbreasts.3three3.org/?p=170). The emotions of cancer treatment in many ways approximate being a Soldier and spending time in war. It’s traumatizing. Comrades die.
I met a younger woman (older than me, but younger than most) here who also has Inflammatory Breast Cancer, and I have taken on the role of advocacy for her. Well, one day I was sitting next to her in the infusion room, where she was receiving chemotherapy. The man next to us was wheeled in his wheelchair back to see the oncologist while he was still receiving his chemotherapy infusion (not uncommon). Well, when he returned from that my friend and I immediately knew something was wrong because his wife was crying. My friend and I shared a look between us, acknowledging the situation. It didn’t take long for the man to announce to the nurse that the oncologist had given him weeks to live. The man, sitting next to us, stated it matter-of-factly. His wife rushed out of the cancer center and into the parking lot, struggling to compose herself. His adult children, who also accompanied him that day, one by one broke down, following his wife into the parking lot. His son, who was stoically standing by his side, asked him if he was going to be ok, and the man told his son that he was, but that he was worried that his wife (mother) wouldn’t be. The son went out to make sure his mother was ok. But with everyone gone, and the man sitting in the chemotherapy chair by himself, he began to cry. He quickly gained composure, and when the man’s son returned from checking on his mother, and found his father had gone to the restroom, he began talking to the nurse, and then he too broke down and began crying. Seeing the entire family having to endure this news, and the father and son both remain stoic in one another’s presence, but break down during moments of being apart from one another brought my friend and I into a much more intimate situation than one would ordinarily find themselves in while in a public place. The sadness overwhelmed any awkwardness, and my friend and I both welled with tears just witnessing it. I was much better at maintaining composure- I’m battle hard. But she was visibly affected. It felt like we were taking cover in a trench and just watched an entire platoon get wiped out by a grenade. The degree of visual exposure to violence is not comparable to war, but the aftermath, the emotional after-effects are very similar.
This past year I started back on my tattoo. For all intents it’s finished, but there are some things I want adjusted, re-worked. During one of the sessions I had with Josh I started crying. Lying back on that lounger, looking up at lights overhead, submitting myself to someone else, all while in a state of heightened adrenaline and endorphins, brought back the trauma of the multiple surgeries I’ve had, and I just felt overwhelmed by it. So I think that’s one of the reasons I haven’t taken the time to write in so many months. I can’t say I’m stuck, because I am moving forward in several directions. I don’t feel emotionally or spiritually stagnant. But I don’t think things have significantly changed in the past year either. I haven’t felt particularly inspirational, and I’m still working through the trauma. A quote in the recent CURE supplemental states, “being told you are cancer-free is not the same as being free of your disease.” So true. Maybe it’s hard for people to understand that? Coming home after an extended deployment in a war zone does not mean the war is over. But I find that the very thing that keeps me from writing turns out to be the entire reason I do write. I am hopeful that as human and unspiritual as my perspective might seem at times, someone will be able to relate to it and not feel as alone as I often feel.
It’s difficult to be surrounded by people and still feel so alone. That’s another part of the reason I continue to write- someday my children will reach a point of maturity, when they will have had enough life experiences to draw from that they can use my writings to look back and truly see me, probably for the first time in their lives. I may not be around to appreciate the sweetness of that fruit, but if not, perhaps I am leaving them something that will provide them with a fuller sense of me than they are capable of experiencing while relating to me as children. With Amanda we are in the thick of it. She’ll be 18 in May, and she has a progressively worsening case of 18itis. She’s in full-out spiritual rebellion, and is emotionally lashing out as well. Yesterday she pronounced in anger that “Jesus doesn’t exist”. When you distance yourself from others by removing all commonalities, you usually can at least find a thread of faith that ties you. But when you even make attempts to sever that tie, it can feel pretty hopeless. It is times like these that the entire cancer experience feels like it’s been in vain, as if my family hasn’t learned a single thing from it. Yesterday she also told me that I “can’t keep sitting around complaining about being sick, trying to get people to feel sorry for me”. I don’t think that I have done that, or do that. I have complaints at times. And I do have limitations. But I keep moving forward with all the ability I have. None of this is about trying to muster up sympathy, but only enough empathy for people to realize how fragile life is, how the only moment we have is now, how important it is to strive for peace within our relationships, and most importantly, to be in a head-on relationship with God. When I remind her I could die, it’s not because I’m trying to get her sympathy or excuse my own shortcomings. I just want her to not take me for granted, and then regret that she did. I just want her to recognize that she only gets one mom and that while I’m not perfect, I’ve endured a lot for her and have loved her. I’m not trying to martyr myself. She’s just at a place where parental discipline and wisdom is rejected as a lack of love. While I try to not take her lashings personally, I do secretly hope that one day all my children will come to more deeply and fully understand what this cancer has been about for me. Whether it’s the treatment itself that is stealing away any quality of life, or just the all-consuming nature of the cancer journey, a person can become weary with the struggle. I am obviously not enduring the unbearable side-effect of ‘hard’ chemo, but I have many long-term side effects which are difficult to treat. These have affected my quality of life. But even more than that, there’s no hope for me of ever being done with cancer treatment. I still go every 3 weeks to the cancer center for my infusion of monoclonal antibodies. I am tired. I am tired of being tired. And having a child who is less than empathetic doesn’t help. Al tries to encourage me by pointing out that it might take 10 years for Amanda to mature to a point where she really starts to understand. But the reality I live in is that I may not be here in 10 years. It’s incredibly painful to consider the potential long-term ramifications for her if we can’t get to a place of working this out in our relationship. It reminds me of Larry Fitzgerald’s interview that aired in the pregame of last year’s Super Bowl: http://today.msnbc.msn.com/id/26184891/vp/28977465#28977465.
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I hope that my willingness to endure cancer treatment hasn’t been in vain, and that if it has any life-changing effects on anyone, it would be my own family. So, I keep writing for them too. For the most part I have tried to protect my relationships with the people I love most by keeping those semantics out of my writing. I have refrained from sharing the gory details of how my relationships with my children, with my parents, with my husband, have been affected by cancer. It’s not because I’m ashamed or am trying to put on a false front. I just recognize that I offer a singular perspective, and that is only one version of the truth. Since I am the only one who writes, am the only one who ventures out to talk about it, it’s only honorable to maintain the integrity of the people I love by refraining from casting them in a negative light. We have all struggled with this cancer. I let mercy lead. Even though I have broken that ‘rule’ a bit here, it’s only been to demonstrate that while cancer may bear good fruits, sometimes those don’t come to fruition until years later- or so I hope.
In many ways my children have been my motivation to keep moving forward, even though I have felt like giving up. I think I shared this before, but they have been my motivation all along. If it weren’t for Justin I probably would not have started college, nor had any need to stop doing drugs. If it weren’t for all three of my children I probably would have died by the hands of my ex-husband, because it was too difficult and painful to get out the abusive marriage I was in. Having already had a life full of tribulation, if I would have survived all that only to arrive at cancer’s doorstep, I certainly would have not endured any treatments, except for my children. And yet I know, even as much as my children have served to fuel the fire, that I tread on dangerous spiritual ground. Jesus did say that, “Anyone who loves his father or mother more than me is not worthy of me; anyone who loves his son or daughter more than me is not worthy of me” (Matthew 10:37). I am fully aware that there’s a fine line here. I Survived is one of the only shows I try to watch on a regular basis. Every person on that show is asked at the end of telling their story why they think they survived the near-death event. Time and again the various people who tell their harrowing stories say that they survived because of their children. There’s just something innate in us mothers that drives us, at any cost, to not abandon our children. Parents have even been known to rush to the scene where their child is trapped under a vehicle, and they are able to pick up the vehicle enough for their child to be able to get out from under. So do these actions and motivations set themselves up against God? (That’s a rhetorical question). The bigger question is, am I willing to die if God calls me to that, and am I willing to live if He calls me to that? Obviously regardless of my willingness, if it’s God’s will to take me in any particular moment, He’s not going to wait for me to be willing. And likewise, in spite of my longing to be in the eternal presence of God, if my purpose here is not complete, all I can do is keep going. So maybe “willingness” doesn’t capture the essence of what I’m trying to share? I think submission and glory are perhaps the better words.
This past year that I haven’t been writing I had a significant experience. Over the summer I developed a strep B cellulitis in my lymphedema arm. That resulted in an emergency room visit. While Al and I were anxiously waiting for a doctor to come examine me we sat on a gurney in the hall, listening to an elderly woman who was not altogether coherent. She was apparently brought in an ambulance from a nursing home, and was not accompanied by any nursing home staff. So this woman, confused and alone, continually cried out in almost indiscernible bellows, “why”, and “God help me.” Just hearing her, knowing she was alone and abandoned, it brought tears to my eyes. I sat in close proximity to her, feeling much the same way. But the difference between her and I was only that dementia had eroded her sense of social and religious propriety. It wasn’t about her feeling sorry for herself anymore than I feel sorry for myself. It was a deep, guttural cry to God, and my spirit was doing the same. But even Jesus felt alone and wept. And He too cried out to God. But it isn’t so much that I cry out (or complain, or whine, or whatever else my daughter might think I am doing), but that in weakness God’s strength is made perfect (2 Corinthians 12:9). Paul wrote to the Corinthians that he had “pleaded” (or “beseeched”) God three times to remove his infirmity, but God responded by telling him that His grace is sufficient. I hope that if nothing else has been apparent through my honesty in my struggles with cancer that the sufficiency of God’s grace has been. But walking in God’s grace is strangely a lonely road to walk. In sermon on the Book of Ruth, John Piper responds to Ruth 1:20, “Do not call me Naomi (i.e., pleasant or sweet), call me Mara (i.e., bitter), for the Almighty has dealt very bitterly with me. I went away full, and the Lord has brought me back empty. Why call me Naomi, when the Lord has afflicted me (i.e., testified against me) and the Almighty has brought calamity upon me?” Piper points out that, “Naomi is unshaken and sure about three things: God exists. God is sovereign. God has afflicted her”. In commenting on this he also states that “I would take Naomi’s theology any day over the contemporary, romantic, superficial, sentimental view of God in so many of our paperbacks and magazines when people are discussing the tragedies of their lives”. While I wholeheartedly agree with John Piper, I also find that embracing this type of theology often leaves me feeling very alone. What cancer has taught me is that there are a lot of people who use bad circumstances to deny the sovereignty of God (“a loving God wouldn’t allow pain and suffering”), and a lot of people who use God to deny bad circumstances (“if we have enough faith, God will heal us”). But there aren’t very many people who embrace the sufferings of Christ as the will of God in their lives. I understand why Jesus wept. Even in the survivor community phrases get tossed around: “let go and let God”, “fight like a girl”, “cancer can’t….” All of these ‘inspirational sayings’ serve to deny the power of submitting to God while embracing His will. Even the Fall issue of CURE’s survivor supplemental has on the cover: “Surviving Well: When Treatment Ends, Surviving Begins”. So, does that mean that because treatment won’t end for me that I’m not surviving well, or that I’m not surviving at all? The community of ‘lifers’ is small. While it’s grown considerably in the last 20 years, as newer treatments have extended life, it also seems to grow smaller as time goes on. There’s still no cure for cancer. So, like I said, things haven’t really changed much. But I keep hoping…………..