Yes, it has been six months since I’ve last written. My lack of words have both been because of my limited time and my need for insight. The occasion of such things seems to be guided by our mysterious God, who always gives me the moments and words when He wants me to have them. When I was working full-time I used to think I could never get bored being a stay-at-home mom, that there were lots of interests I could pursue. I would dream about all the wonderful, altruistic things I could accomplish, if only I had more time. And then when I got cancer, and especially after my recurrence, when the inability for me to go back to work became a reality, I dreamt of all the time I would have to relax, to nurture myself, my body, my mind, my soul. But it seems that all my days are filled with is busy work, and lots of it. It’s boring stuff and has no perceptible positive affect on the world, yet it completely consumes my days. Not working is nothing like I imagined it would be.
I’m still in weekly treatment. Every Tuesday I head to the cancer center where a needle is stuck through my skin and into my port, delivering the liquefied drugs that are supposedly keeping my cancer suppressed. Sometimes, like this past week, I am able to get a 3 week dose, which is a dose much higher than the weekly, but affords me a solid two week break before I have to get back into a weekly routine. So far, since I started this phase of treatment last August, I have only taken that high dose reprieve twice- once when Justin came home for Christmas, and this past week, because we are leaving for Missouri to be there by Justin’s side as he is honored along with his battle buddies for all that they have accomplished in the past 6 months of training. He will be coming home for a short 10 days or so, but now he is officially a Soldier, obligated to report for duty. His duty station will be Schofield Barracks, Hawaii with the 8th MP Brigade/25th Infantry. Being that it will be the last time we see him for quite some time, I am grateful to not have to take time away for chemotherapy.
And that’s about it. But I know I can’t get away with just that. I know I have to write something more substantial, more real. Well, I still have a heavy blanket of fatigue on me. I still have neuropathy (numbness) in my hands and feet. I also still have flare-ups of fibromyalgia, and am going to the cancer center three times a week for occupational therapy again (in addition to all my other “business” there). I still have moderate lymphedema in my right arm and hand and in both legs/ankles. And I am still on blood thinners and go for regular blood checks. These are all long-term side effects that cannot be cured, but are managed. The good news is that my last scans in late September were all clear. My heart is still in good functioning order too- the chemo I’m on can change that for the worse. But since then I have had to have a colonoscopy, as my 27 year old brother was found to have early stage (in situ) colon cancer. My colonoscopy, although a very undignifying experience, proved that I don’t have colon cancer. Having gone through so many physical procedures, treatments, tests, exams, I have pretty much learned to just submit myself to such things, sort of like the doggies in the window who are getting groomed. It isn’t fun. I don’t like it. But I figure if I don’t resist I can get it over with that much sooner. So, that’s behind me now (no pun intended) and I don’t have to go back for another colonoscopy for 3 more years. And things, for the most part, look good. My circulating tumor cell count is staying at “0”, so the cancer is at bay for now. Or, I should say, it isn’t traveling through my veins. But I have these odd bumpy spots on my chest that I am concerned might be skin mets. Skin mets and Inflammatory Breast Cancer are really almost the same thing. They are different, but the two seem to go hand-in-hand quite often. IBC presents in the skin of the breast. But it’s not skin cancer- the cancer cells themselves are of breast tissue origin. For whatever reason they don’t sit still and grow lumpy tumors, but travel through single-cell pathways in the dermal lymphatic system. So, that’s why women get the symptoms of IBC- swollen breast, thickened skin, rashy appearance, etc. I don’t really know what these spots are, but it’s not entirely inconceivable to consider they may be signs of left over cancer cells in my skin on my chest. Skin mets don’t generally show up on scans. But I’m having a hard time getting local doctors to take these spots seriously. They really don’t know what they are, but they don’t offer to do a biopsy either. And while I’m not panicked, I would like to get my tattoo touched up, as these ‘things’ have literally eaten the ink out of my tattoo in circular patterns. I obviously don’t want to take a tattoo needle pushing ink into my skin if the skin is rampant with cancer. So I’m battling that. The oncologist I saw at MD Anderson wants me to come back in to see him- he is concerned enough about my description of these spots to want to see me in person. I am certain that he has seen IBC skin mets on many occasions, whereas most local doctors have not. I am sure that he would order a skin biopsy, which I would do there. But that would mean another trip to Houston, and I am trying to avoid that, if possible. Other than that, things are just going along. This past month I was able to get my tattoo finished. That’s been a two and a half year project, so I’m relieved that it’s done (except for the touch-up I need on my chest now).
But that’s not to imply that things have been emotionally easy this past six months either. Although I am far less fearful this time around, I am also less hopeful. I don’t mean hope as in cure. I mean hope as in the “light at the end of the tunnel” thing. When I was in treatment the first time there was a timeline, a set number of treatments and each served as markers of my progress towards the finish line of cancer treatment. Now there is no finish line in sight. This is a race that I will be running until the day I die. The reality of that has slowly sunk in through the small cracks of my defenses- small increments of conscious awareness have flooded into my emotional sea like rivers that empty into the oceans. I have had several, but brief, moments of tears. This is my life. This is what my life has become. Every week cancer treatment. It’s never ending- until I die. This is my life. Most of the time these moments hit me on my way back home from treatment. And more often than not they come when I get out of downtown traffic and start heading towards the quiet solitude of the hills. Every day I drive by the cemetery at least once, as the edge of it rests along one of the two roads we take to get anywhere. And at least twice a week there is a funeral going on when I pass by. I’ve seen large funerals, so big that cars have lined the small inner roads of the cemetery and people are walking distances to get to the graveside. And I’ve seen small funerals, just half a dozen people, huddled together with their heads hung low and feet firmly anchored to the grass. But most of the time it’s just an empty graveyard, full of bronze plaques marking where the decaying bodies are, and fading imitation flowers that attempt to give hint of loved ones who are still living. I can’t help but look. I guess some people would find it creepy, or would want to avoid the reality that passing by a cemetery every day would force. But I actually am grateful for that cemetery, that we moved to a place where I have to drive by it. It is a reminder for me. And it’s not as if cancer isn’t a reminder enough. But I can get so easily caught up into feeling sorry for myself because of cancer treatment, I can become so indulged in sadness and grief over everything I have lost to cancer, or even become so absorbed in the daily schedule of cancer treatment that I forget to appreciate being alive. And the cemetery helps me do that. It reminds me that although death is chasing me down this dark tunnel, I am still on the top side of the grass.
I’ve long been fascinated by Mount Everest. It’s not an attempt I have ever seriously considered- I know I lack the physical ability. But the pull, the calling, the mental ability to summit, and all the lessons that can be learned through others who have, has been something I find very fascinating. The Discovery Channel has recently ended the second season of Everest: Beyond the Limit. It was one of the only television shows in months that I made a weekly commitment to watch. Although some found him irritating, arrogant, and their least liked character in the reality-drama of Mt. Everest climbers, I really came to have a deep respect for Tim Medvetz. He is a motorcycle-rider from Los Angeles who suffered severe injuries from a motorcycle accident. Rather than sit around and drink away his frustration with his slow physical rehabilitation, he set a goal: climb Everest. And with pins, bolts, and plates holding his bones together, he set out to do just that. Regardless of his sometimes oppositional character, I find his will to survive, to overcome his own limitations to be compelling. The first woman who summited Everest, Junko Tabei, said of her experience, “Technique and ability alone do not get you to the top; it is the willpower that is the most important. This willpower you cannot buy with money or be given by others…it rises from your heart”. It’s that strong will to survive, that tiger spirit, that captivates me. Since cancer I have had many people tell me how strong I am, how they don’t think they could “handle it”, or don’t know how I have. But I don’t really think I’m all that special, or unique. I think we all have a will to survive, and unless that natural tenacity is depressed, we will all fight with what we have to fight with. This past December I turned 35 years old. In May it will be five years since my diagnosis. Five years that I have been walking with cancer. Within that five years I have summited Everest more than once in my own mind. But those summits were not blissful mountain-peak experiences. There was no nirvana going on there. When asked about what the hardest part of summiting Everest was, one anonymous climber said, “Pissing through 6 inches of clothes with a 3 inch penis”. I half-heartedly apologize for choosing such a vulgar quote, especially since there are so many other eloquent ones that express the true brutality of climbing Everest. But in truth, cancer is vulgar. There’s very little eloquence about it. And it surely has, from all perspectives, felt like pissing through 6 inches of clothes with a 3 inch penis! So it isn’t just the will to survive that captivates me, but also the capability of tolerating such extreme conditions, of adapting to them, of finding the motivation, the joy and purpose even amidst sub-zero, life-threatening conditions. Turning back is so tempting. And yet, “summit fever” compels climbers upward, sometimes even to their own death. But why?
I know what compels me upward, forward. It’s that heart chain that anchors me to my children, that can’t stand bearing their pain of abandonment, their grief of the loss of their mother. Experts on death and dying know that the emotional process for the person dying involves letting go. While death is inevitable, many people hold on much longer than expected because they are seeking assurance that those they are leaving behind are going to be alright. I am far from death, as far as I know. But still, as a Christian I am taught to entrust such things to God. For only He can make things alright. In faith I must trust that God will take care of my children, His children, should I leave this earth. But, as I’ve shared before, whatever measure of faith I have has been given by Him. And I know that He has purposed this expression of faith to demonstrate that will to live- for now. I wonder if a Christian, because he trusts God and is secure in his eternal belonging, would give up his life to Mt. Everest more quickly than would someone who did not believe in Christ? The warm and radiant light of a heavenly Christ, or the bitter cold of Mt. Everest where we have to piss through 6 inches of clothes with a 3 inch penis? I’m not even really convinced that once we get to that mountain faith plays into the equation. From a spiritual perspective it should. But when you’re battling the elements, even the will to survive will only get you so far, and no amount of faith will change the fact that people are susceptible to die from hypothermia, from cerebral edema, from pulmonary edema. We are more frail than our will allows us to accept. Yet, there is something oddly compelling about the experience of Everest, something in me that wants to want that. Pain reminds me that I am alive. And wanting to experience pain reminds me of my faith. I don’t think I’m working towards martyrdom here. At least I don’t want to sound like I’m playing the martyr. This isn’t play. There’s a genuineness about what I’m sharing because in light of accepting chemotherapy for the rest of my life, I have been imagining the Cross of Christ a lot again lately. I’ve thought about the ideas behind those words some people say about the image of the crucifix, “but Jesus got off the cross”, as if it is a shameful thing to look upon Him there. Indeed He did conquer the cross. And our Easter celebration of that is quickly approaching. But I find myself in what is turning out to be a lifelong struggle with accepting the Cross. I’m not talking about faith here. I’m talking about the full acceptance of what it means to be a Christian- the manifestation of the crucifixion in my own being. I’m talking about picking up my cross, dragging it up a hill even in my bloodied and beaten state, and crucifying myself and all of who I am to it. I’m talking about cancer and accepting it. We must not just look at the empty Cross as but a symbol of who we are; we must fix our gaze intently on our crucified Lord so that His crucifixion becomes a reality of who we are. It’s a lot harder than it sounds. Thank God truly for His mercy and grace! Without it there would be no hope for Resurrection!
As I head towards the mountains and into the small valley where we live, I pass a cemetery, and return home to the few crucifixes displayed on our walls. It all serves to remind me as God speaks out from my heart and through the things surrounding me. Lately the winter weather has cleared out the smoggy air, pushing forth my conscious awareness of all the vast and glorious mountains around us. It truly is breathtaking. On my drives home from chemo, as I’ve wandered off into the pristine beauty of the scenery I’ve also pondered the peaks and valleys of my life. I’ve thought about the 23rd Psalm: the valley of the shadow of death, like the valley where we live. This valley isn’t one where I walk alone. It’s not a valley shared only with other cancer survivors, or people with life-threatening disease. This is the valley we are all in. We stand side-by-side here. We all have a shadow of death chasing us. As author Steven James puts it, “As far as we know we’re all the same age. Not that all of us are the same distance from birth, but we are the same distance from death. We’re all one heartbeat away from eternity”. We are all going to die. It is a sobering thought. But until we embrace it, how can we truly live? I suspect that is the essential hurdle that most Mt. Everest summiteers have jumped. Regardless of all other motives for climbing the mountain, conquering that single hurdle is what makes them extraordinary people, I think.
Besides being an Everest experience, in the emotional realm cancer has become my war, and the treatment my war zone. I don’t mean to sound so dramatic that it discredits what I’m trying to express. There are significant differences between the cancer survivor and the war veteran. But I do know that when I watch movies like Born on the Fourth of July it is no longer just my human experience that can relate. I’ve always been a sensitive, relational person. Dramas have helped me to access the emotional familiarity that common human experiences share. But I’ve had a perceptible change that’s taken me to a different place entirely. I don’t just know what it’s like to feel pain, or loss. I know what it’s like to lose a part of my body and feel the pain and loss of that particular experience. I know what it’s like to lose comrades to cancer. I know what it’s like to have to submit myself to humiliating medical procedures, to have to work through panic and grief, to struggle with accepting death. I’ve gone so far down this road that usually when I am around people who have never experienced cancer it quickly and painfully becomes clear how vast the chasm is between us. There’s just places we can’t take people, no matter how many books we write or movies we make. While we watch on television the taped and edited film of people summiting Everest, it just can’t compare to being there ourselves- to feeling the sting of the cold, the lightheadedness of the altitude, the glare of the unfiltered sun, the exhaustion, exhilaration, the triumph and the tragedy. And then there are a good many people who wouldn’t want to go there even if you could take them.
So, besides those who attempt challenging and death-defying feats, like summiting Mt. Everest, I also find that I can relate to veterans of war. Fundamentally, cancer treatment and war are two entirely different things. Yet they share striking similarities in experience and outcome. Al and I recently started watching the Band of Brothers episodes again. In the portrayal of Lt. Speirs, the character, responding to a Pvt. who shared that he hid in a ditch because he was too scared to fight, said, “We’re all scared. You hid in that ditch because you think there’s still hope. But Blithe, the only hope you have is to accept the fact that you’re already dead. And the sooner you accept that, the sooner you’ll be able to function as a soldier is supposed to function….”. Terror is immobilizing. And certainly terror, the fear of death, can be a stumbling block for people. It can divert our hopes to things that are temporal, like medicines, or treatment plans, or weapons, or war strategies. Until we accept death, embrace it, find our hope in the eternal, we are not fully alive anyway- we are hiding in ditches. Another scene in one of the episodes shows (then) Lt. Winters riding on the railway when taking his forced leave in Paris. Separated from the war theatre for the first time since being sent there, he is feeling out of touch with civilization, with the normalcy of daily life, with the concerns of people not immediately threatened by war. As he looks around at the other passengers on the train, the train passes underneath overhead lights, causing flashes of light to penetrate the train. The flashes, similar to the flashes of weapons being fired in the darkness, cause him to flashback to his recent experiences in the war zone. It’s a difficult adjustment to make, being in the company of people who have not been traumatized by war. It’s as if a different reality is going on inside the mind of the war veteran, and all the while they are trying to live “normal” lives in parallel to those who have not been to the war zone. Things that used to really matter are now so trivial, so temporal. Conversations seem so trite. Offenses so inconsequential. And interacting with, observing people who still cling to those temporal things can make you feel like an alien, a stranger to the human race. It can cause you to dig a foxhole within your psyche, hunkering down in the safety of your singular experiences. You feel different. You are different. The effect the war has had on the veteran is so profound that words cannot even begin to allow those who haven’t been there to understand. Even 50 years later the veteran is still able to spontaneously access those emotions. It doesn’t just wound the body, rattle the emotions, it mars the soul. It changes a person’s being and melds itself into the very fabric of their existence. It cannot be escaped because it is within them, a part of them. Shell shock. Death consciousness. Loss. Trauma. It is more than just a band, it’s a fellowship of brothers, of sisters who share something in common that exists at the very core of their being. It is more than just shared experience. It is shared identity. And yet ironically, to embrace the Christian life itself is to embrace death, to accept that we are already dead, to accept that we are different, are aliens, not really belonging here. I don’t know why I am struggling so much with finding sincere and honest intimate fellowship with Christians these days. It seems few and far between who are actually willing to gaze upon the crucified Christ. Most are just content hiding behind the symbol of the empty cross. Most, it seems would rather sit on the couch and play imaginary war with their video game controllers instead of really living the life of a Soldier, of a mountaineer. I admit, it is no fun having to deal with ataxia, and frost bite, hunger, or dehydration, insomnia, or fatigue. But I had expected that with a cancer diagnosis I would find my greatest comfort in the fellowship of Christians. And it just hasn’t been my experience. And so, where are my E Company, my battle buddies, my comrades? Scattered at the drop zone, I have spent the past five years searching for them for strength. I am sad and frustrated to find so many of them hiding in the ditches, clinging to the futile hope of getting out alive. But even the lack of loyalty and its’ profound affect on my own experience of faith has been driven by the Hand of God. And so in my conscience He remains the author and perfector of it.
But there’s no longer a reachable light at the end of this tunnel I am in. Well, it is reachable, I will someday reach it, but not by my will or effort. I see it, perceive it. But the hope is no longer hope for a life free of cancer or cancer treatment. The hope is no longer to return to my life, my body, as it was when I was 30 years old. That light at the end is the eternal light of Jesus Christ. And at the end of the tunnel is physical death. While it may seem to some like a dismal outlook, I really am quite thankful to be given it. Most of my days aren’t spent in heavy contemplation of death. Life goes on as usual and I get ensnared by all the trivial things that ensnare all of us humans. Most days I am hardly aware of the inevitability of death, or do I even remember that I am in treatment for cancer for the rest of my life. Really, the only days I can’t help but remember are Tuesdays. But that is why I appreciate the reminders as much as I do. The summit seems sweeter, even if (or maybe because) I have to piss through six inches of clothes with a 3 inch penis to get to it. And so, ironically the very struggle to get to the top turns out to be the purpose.
We’re about to have a mountain top experience with Justin next week when we fly to Missouri for his United States Army Military Police School graduation. It’s amazing to be the mother of an adult son who has accomplished what he has accomplished and to still be alive to share in honoring him for that. I know that within the past six months he has had his own indescribable hurdles and Everests to summit, and that the conditions have been harsh. Proud is not even the word. Bond is the better one. Although he is still very much 18 years old, as Justin has experienced the depth of perseverance it takes to be a survivor I believe that our understanding of one another has grown. And I am excited to enter this phase, this transition of parenting an adult child. I can already see the challenge before me and I am ready and grateful to take it on. But I am also telling God of my secret fear- that I have had enough and I don’t want to be required to bear the pain of losing my son in the war. How much can a person bear?
In addition to these long, introspective, and emotional weekly drives to and from chemotherapy, I have also been busy with parenting the two kids still under the wing, and the third child, a foster child we have added to our family. This is our second go-around with foster parenting within the last six months and it has really proven to be a bigger challenge than we anticipated. It’s hard to know what dynamics will come into play until you’re already there. And so far, Jared isn’t handling it well at all. He’s been displaced as the baby of the family and just isn’t mature enough yet to process that in a healthy and acceptable way. So it’s required a lot of energy from Al and I. I am also homeschooling Jared as of this month. Earlier in the month he was expelled from the Christian school he had been attending. God does answer prayers- because Jared is such a different child I have been praying for years that I would have the situational ability to homeschool him. As angry as I am at the Christian people who made the decision to expel him, I still thank God for bringing about the situation that allows homeschooling to be the best option. I am tempted to say that it came at an unfortunately high cost. But, the wiser part of me knows that is a fleshly way to perceive my gratitude. I still struggle with bearing the weight, with submitting in honor. Amanda’s growing up. In a few short months she will be 16 years old. She’s maturing, blossoming. I’m proud of her too. She took after my strong-willed spirit and she’s accomplished a lot by it. She has lofty goals, so she’ll need that tenacious perseverance. But I’ve been working on helping her discern where and when to utilize it and where and when to let it go. It’s not surprising that submission is a struggle for her too. Al’s working through experiencing the war from a different vantage point. It’s almost like he’s been the medic, the one I have relied on when I’ve been wounded. I do mean that emotionally, but even more so physically. He has been the caretaker. And I don’t truly know what that is like. We don’t talk about it much. He draws his strength through the solitude of his own foxhole. But, we are in the same position of looking for our battle buddies on the field. He is looking for his fellow medics, those who have the much needed supplies and tools to carry out the job most effectively. And they really aren’t there. So we share that aspect of the experience together, and are equally jaded by it. But we’re all getting through and life pretty much just goes on like normal, whatever that means. So there’s nothing else to really share that isn’t incredibly insignificant in light of what’s already been shared. Just take a deep breath and get back to life- that’s what I’m going to do!
Always in His Grace,
Aimee
