Four months have passed since I last wrote.
Last month Al and I made the long trip to Houston to see Dr. Cristofanilli at MD Anderson. It’s been 2 years now since we were last there. In that 2 years time MD Anderson has opened the first-ever Inflammatory Breast Cancer Clinic, named rightfully for Morgan Welch. I recently read that MD Anderson has been ranked by US World News as the #1 cancer center in the country. They (the IBC clinic specifically) have also just been announced as the very first recipient of the Susan G. Komen Foundation’s Promise Grant, in collaboration with American Airlines, who vowed to raise several million dollars (http://www.mdanderson.org/departments/newsroom/display.cfm?id=D2B9D036-72EB-4580-8C457928D3387A89&method=displayFull&pn=00c8a30f-c468-11d4-80fb00508b603a14) for research. Although it’s not Komen itself that is giving the money, it’s good to actually see a tangible result of all that marketing of pink ribbons that Komen does. They sure do rake in millions of dollars from pink trendiness and corporate sponsorships. I really come to dread October because of that. It used to be a much-anticipated month, because it is also ‘domestic violence awareness month’ and once upon a time, I had a passion for that cause. But these days the purple seems to get swallowed up by pink and everybody seems to go mad “rah rah’ing” over breast cancer. All at once we see these celebrities come out of the woodwork to talk about cancer. I mean, it’s a good thing really. But none of that, none of that “awareness” has helped me or the thousands of young women who have died from Inflammatory Breast Cancer. It’s almost as if their voices also get drowned out by the ‘pink ribbon buzz’. So I count down the days until October has passed, and am amazed at how far back in the rear view mirror it already is! But if all that pinkness serves to rake in money, and in turn that money is actually starting to flow to organizations like MD Anderson’s IBC Clinic, then hope on that horizon is brighter than it ever has been before. Even still there are so many women who can’t get to MD Anderson. I am blessed that through Al’s employer we actually have an insurance that covers my care there (for now). We still have to put out a lot of money to get there, but at least we didn’t walk away with a $21,000+ bill this time!
So my trip to Houston was uneventful and our overall mood was much improved from the first time we were there in 2006. This time I had a PET/CT scan, as compared to just a CT scan, which I had last time, and which required the rather unwanted experience of a barium enema. I also had some blood tests done, and saw Dr. C. We made the decision to make the long trip to Houston because I was due for a 6 month check-up and I continue to have these white scars appear on my chest. It turns out that no one seems to think it’s cancer. I wasn’t particularly panicked that it was, but I would like to know what the cause actually is. I’ve been to two different dermatologists, had a biopsy, and have spoken with my tattoo artist and several doctors about it and still have no definite answer beyond that these spots are scar tissue. They continue to appear and are confined to my chest. I do not get them on my right side, where I previously had radiation. Dr. C believed that they might be auto-immune related, which makes sense. He also said something about IBC- that it is thought to be auto-immune related, but that the white spots were not IBC related. He recommended I see a rheumatory specialist, which I did return home and do. Further blood work did not indicate any obvious auto-immune explanation. Although it did demonstrate some elevated levels of certain things, this is actually the opposite effect the doctor was expecting to see. Any auto-immune issue would be treated with chemotherapy anyway. So I didn’t get any further answer. At least I know it isn’t cancer, which prompted me to schedule an appointment to get my tattoo worked on. The spots had ‘eaten’ some of the ink, and I wanted to get that, and some other things, touched up. I also returned home from Houston and saw a cardiologist. I have echocardiograms every 3 months because the chemotherapy is so bad for the heart. Those have always demonstrated that my heart’s still working. Although my ejection fraction (the amount of blood pumped out of the heart) has declined from 82% before I started chemo, to 62% now (it’s gone up a bit), that’s still considered within a ‘normal’ range. But that blood clot I got back in October 2006 continues to cause me problems with circulation and whatnot, and I just wanted to ensure that all really is well. He said I “didn’t have anything to worry about”. But that’s always a patronizing perspective. I have a lot to worry about. I think in the shadow of a big, bad, deal-breaker like metastatic cancer, everything else seems trivial. But to someone still trying to survive, every ‘little’ health issue can come into focus. My body is so different than it was pre-cancer and I’m still struggling to accept all the changes and permanent side effects cancer treatment has had on me. Some of those changes have been physical, having unseen internal effects (like my still blocked jugular vein and 20% decrease in heart functioning) and others are painfully seen (like my seemingly permanent hair loss and the 70 pounds I’ve gained since cancer). It’s odd that before cancer any doctor worth his advice would have told me I needed to lose weight had I presented myself for care. But now I bring up the issue and it gets swiftly swept under the cancer rug. I guess my cancer is more of a threat to my health than obesity? But that’s the clearest example of how cancer treatment can have long-term negative effects on the quality of life (and health). And it’s also the clearest example of how even the perspective of my doctors gets overshadowed by my cancer. It forces itself into the driver’s seat, no matter how hard I try to pretend that I’m still in charge.
Relatively recently I received a myspace comment from a fellow cancer survivor- she left an “inspirational quote” that stated, “What has happened to us is truly horrible. But we have a choice. We can live the rest of our lives as a memorial service around the event or we can learn from it and build an even better life (Gloria Stills)”. I was a little offended by the drop-and-run quote because it seemed to imply that I just needed to “get over it”. The truth is, cancer has not merely been an “event” in my life- a single moment that occurred which I should have been able to move on from. I live with cancer every day, and it’s difficult for people to understand that, especially when I am currently NED (no evidence of disease). Lance Armstrong was stage IV cancer (there’s only IV stages) when he was diagnosed. And as far as we know he is doing well. But I cannot compare his experience with mine. He had metastatic cancer when diagnosed, but it responded fully to treatment. So he was allowed to stop treatment in a sort-of ‘wait and see what will happen’ plan. His cancer proved to be non-aggressive and highly responsive. I was only stage IIIc when diagnosed. Yet, from April 2003 to March 2005 I was treated with 3 cycles of Adriamycin/Cytoxan, 2 cycles of Taxotere, 2 cycles of CAT (Cytoxan day 1, Adriamycin over 72 hour infusion, Taxol day 4), a radical modified bilateral mastectomy (plus several biopsies and surgeries to implant port catheters), 35 daily radiation treatments with bolus boosts, 2 more cycles of CAT and then 8 months of weekly Herceptin infusions. In total it was 9 aggressive chemotherapy treatments, 32 weekly Herceptin treatments, 35 daily radiation treatments, and 6 different surgeries. Reading back through what I wrote in March 2005 I am reminded that at that time I believed God was whispering to me that I needed to stop treatment. After all, I had been officially NED for 16 months months. In fact, at the time of my mastectomy in November 2003 I was NED. Yet, I continued on with radiation and more chemotherapy after that surgery, “just to be sure”. Sixteen months of no identifiable disease activity and continuing aggressive treatment was a lot to ask. And I believed God was telling me that He had healed me. So I did stop treatment. I don’t doubt that was the right decision for that time- when enough is enough, it is just enough! The treatment itself was doing more obvious harm than it appeared to be doing any good, at that point. But when you’ve had all the treatment that I had and the cancer returns (or escapes demise and detection and then multiplies out of control again), you’re in serious trouble. I’m facing something highly resistant and covertly aggressive. In November 2005 I had routine CT scans that reconfirmed my NED status. But in August 2006, just 9 months later, scans demonstrated that I had an 8cm tumor on one side of my pelvis and a 3.9cm tumor on the other side. This disease is like those aliens in the worst of science fiction movies- you know, those ones that get dismembered and just grow new, stronger limbs, only now they’re twice as mad and more determined to claim some victims. So, as grisly as it is, I will be in treatment the rest of my life, regardless of my disease status. It’s nothing like what Lance Armstrong or Sheryl Crow has dealt with. Someone recently pointed out to me that Christina Applegate “had what I had” and “is doing really well”. No, she didn’t. Christina Applegate had lumpectomies (tumor removal), followed by a prophylactic bilateral mastectomy. She made a choice to have her breasts removed so that she didn’t have to be concerned about her cancer returning. Unlike me, she tests positive for the BRCA1 (breast cancer) gene, and given her likelihood of recurrence, she “called the operation a logical decision”. In exchange she plans on having reconstruction- brand new, perky boobies, free of charge. I don’t mean to belittle her experience in any way because losing breasts is a traumatic experience. Period. But she’s had “the event” and is now done with it in the sense that she can re-build and move forward. That “event” is forever in her rearview mirror. She didn’t have extensive cancer-causing treatments. She won’t get breast cancer again. That’s a very different experience than I have had. Cancer walks beside me for the rest of my life, regardless of how short or long that will be. Every week I get a needle pushed through my skin, into my port, delivering a foreign substance that I am certain my body does not appreciate. It doesn’t know the difference between the bad things that are good for me and the bad things that are just bad. And of course that takes a toll. Too few ‘lifers’ have lived a long enough life to really determine the long-term effects of these maintenance-dose treatments. So at 35 years old I am saying that 5 years ago I didn’t just suffer an “event”, but a life-altering trauma with continuing health maintenance issues. Welcome to palliative care. This is now a way of life for me. And again, I’m not trying to trivialize any woman’s experience with breast cancer. It’s traumatic no matter who you are and no matter the depth you’ve had to jump into the cancer treatment waters. But the experience is different for those of us living with metastatic disease. I’m not whining about it, nor am I asking for martyrdom points. I just want understanding.
Many women I have established connections with over the past 5 years have passed away. Over a dozen, actually. Some of their names I have shared before: Terri Grey, Morgan Welch (who the IBC clinic was named after), Tina Turck, and Andrea Collins-Smith, who I wrote about last time. Andrea passed just a couple of days after I sent that last e-mail. I hope that you pray for the six children she left behind, especially as they face their first Thanksgiving and Christmas without their mother. Most recently my friend Julie MacDonald was taken by IBC. She was a special education teacher in Canada, a vibrant young woman, who also left behind young children. And every time a sister passes on I am stirred. I feel sadness, anger, fear, disgust, and even guilt. It’s not ‘survivor’s guilt’ in the sense of “why did I survive and she didn’t”? I suspect people who go through disasters together have more of that sort of deep questioning. Mine is more of a guilt because there’s a selfishness to my experience of my friends’ passing. It is a guilt that is bound by my fear of this disease, and is really inexplicable. Each and every death reminds me of my own precarious situation, and most times the thoughts and feelings aroused are rooted in fear even more than they are in sadness. In fact, with each sister who passes I find I grow less and less sad (or more and more apathetic). I used to spend the entire day, sometimes even throughout the following week, mourning the loss. Now I have a quick cry and swiftly move back into ‘life as usual’. I think it’s just become too overwhelming for me. I still have a lot of emotional healing to do. It’s not that I’m falling apart. In fact, I slowly weaned myself off of my anti-depressant a few months ago, and the terrain’s been a little rocky, but I’m managing. I still have a long way to go though. The other day I met with Dr. Patel’s wife. She also is an M.D., and now that their children are grown and off to college she is offering her knowledge and time to give something to the patients at the cancer center. Filling out her pre-interview questionnaire I was reminded, in black and white, just how far I do have to go and how fragile I still am. Just last week I was telling a confidant about how difficult it is for me to practice yoga- I start crying in the middle of it! There’s something about centering myself, relaxing, and letting go of distractions that strips away all the layers and gets to my core. That’s where it is all contained- this vast sea of devastating emotion. Somehow, throughout the five years and 6 months since I was diagnosed with IBC, I have developed a really effective system, even without my conscious effort, to contain all those emotions. Somehow I have convinced myself that if I didn’t contain them I would not be able to carry on, that the weight would be too heavy, that giving them center stage would disable me, render me uncontainable.
The story of Jesus paying a visit to sisters Mary and Martha at their home is haunting me these days: As Jesus and his disciples were on their way, he came to a village where a woman named Martha opened her home to him. She had a sister called Mary, who sat at the Lord’s feet listening to what he said. But Martha was distracted by all the preparations that had to be made. She came to him and asked, “Lord, don’t you care that my sister has left me to do the work by myself? Tell her to help me!” “Martha, Martha,” the Lord answered, “you are worried and upset about many things, but only one thing is needed.Mary has chosen what is better, and it will not be taken away from her” (Luke 10:38-42). This story is reiterated in many women’s Bible studies all over the country, time and time again. But being more than just a story we can all relate to, it reveals a deeper problem- the very problem of God-avoidance I am now dealing with. I’m not talking about avoiding conscious prayer, or avoiding reading the Bible, or worshipping God. It’s deeper than that. When we read the Bible we can read it through the lenses of intellectualism, picking apart the theological underpinnings of what we are reading so much so that we disallow it to penetrate our hearts. When we talk to God sometimes we can use really big and fancy words that are just a cover-up for the deeper cries of our soul- cries so deep and painful that there aren’t any languages known to man to relate them. And even though we stand in worship, arms outstretched towards God in reverence and thanksgiving, we can be holding something back when we fail to truly acknowledge God’s hand in even the most painful trials in our lives. This is what Martha was doing. In her mind she believed she was “serving the Lord” by doing all the busy work. But this was really a distraction, an avoidance. I thought this ‘problem’ would improve once I actually had free time. After all, I haven’t worked a full-time paid job since September 2006. But I am finding that with no clock to notify me of when I am actually done with the day’s work, I am never done. I have more to do than I ever have, and I have resorted to plastering sticky notes all over my desk with lists of all the things I have to do. As I was sharing with my confidant, these lists don’t ordinarily contain responsibilities like dishes, or laundry. But these days I am finding myself adding this stuff to the lists, making them that much longer. I’m not doing that because I want to make my load heavier, but because I am driving myself crazy trying to get everything done in a day. When I am unable to I am really disappointed with myself. I feel unaccomplished, unproductive, and my life (as I define it) begins to feel futile. So I add the usual responsibilities to the list just so that by being able to cross them off when I have completed them I can count them- as if I am legitimizing my life by what I have accomplished! So in some common, yet really unhealthy pattern I have developed, the more I do the more valuable I am. But the more I do, the less free time I actually do have, and stuff that I need to do for my own well-being is lucky to make it on the ‘back-list’. That’s the list off to the side that just sits there. It’s a ‘someday’ list- a list of rewards I can engage in when I get everything else accomplished. But I never do get everything accomplished.
I would be inclined to think that my avoidance of the types of activities that beg emotional healing would be an indication of my “running away”, but I don’t think it’s so much my fear of working through absolute trauma as much as it is my inability to let go. When you’re in ‘survival mode’ it’s really hard to allow yourself to have any feelings about that. Pondering it, it brings back vivid images of when I gave birth to Amanda. Not having any remedy for the pain of childbirth (by choice), I carried all the pain within me. Every muscle held the tension, so much so that the day after I could hardly walk on my exhausted legs. I’ve never been one to consume medications to reduce pain. It’s not that I don’t feel pain, or feel it less than others- I am just very proficient at carrying it and prefer that to the side effects of any medicinal relief. And I’ve had a long and exhausting five years of acute (emotional) pain. But I have a task of surviving ahead. Like a dismembered war veteran, I am learning to walk with new legs, and my focus is so intent on the task of that that I have little room to actually acknowledge feelings I have about it. Maslow’s Hierarchy of Needs frames that for us perfectly- people functioning at the bottom of the triangle, who are fighting for basic needs like food and shelter, aren’t even worried about the love and belonging needs towards the top. It’s only after those basic needs are met that we start striving to get the ‘higher’ needs met. So it is through my own framework that emotionally experiencing the trauma of cancer treatment is a luxury reserved for those who had “the event” and can now move on. It seems ridiculous in some aspects. I mean, I ask myself, “what would happen if I just allowed myself to feel all that stuff”? But the answer is not so simple. Sure, I would cry, and cry some more. I might shake my fist at God. It would be a process. But it’s what is at the end of that process that is the greatest challenge- acceptance, surrender. Shortly before Andrea passed I wrote these words to her: “Living while dying is a tight rope. It’s a delicate balance between accepting what’s real and holding onto hope, as you’ve also written before here in this blog. But you’re not in a place to abandon any future plans. You’re still very much alive, and are entitled to plan for living. I remember distinctly going through this really hard phase when I struggled with this more than usual- felt like I was battling denial. I would have moments of normalcy, almost as if I didn’t even have cancer (except for the perceptible physical signs). And then when those moments would pass I would feel confused- like I had allowed myself to slip into denial, which by all means would be a bad thing. But I’ve come to understand that it really isn’t denial. At every turn cancer was with me and I knew it. It imposed very real limits on me. But I needed to continue living, needing to grasp onto something that kept me anchored to this life I have. So I’m not sure if you’re getting “carried away” as much as it just might be you trying to anchor? Death is a process when it comes to us through terminal illness. And it’s very rhythmical, this process. As we improve, our desire/need to anchor follows. And as the cancer begins to overtake us, we start to let go, to reel that anchor in. It’s only when the situation calls us to anchor and we cannot, or when death begins to overcome us and we refuse to let go that things can get out of balance and those around us suffer”. And so my own words lay bare my soul. I am spiritually stuck- holding on by my fingernails as God is dragging me ever-so-slowly into the abyss. I mean, as usual my intention is not to sound so dramatic. I’m nowhere near my death bed. But in a spiritual sense I have not yet surrendered myself. There is still a part of me that is wishing away cancer, a part of me that even after five years of cancer treatment still believes I can keep it at arms-length and somehow reclaim the person I was before “the event” of May 2003. Christina Middlebrook wrote about “mourning her own death”. And I think that puts the finger right on the soft spot. I don’t know how to accept death and continue surviving at the same time. Well, at least not emotionally. Intellectually, I’ve been writing about that all along. But I think I’ve been at an emotional impasse for a long time too. God is sitting in the chair in my living room, with full count of how many hairs I permanently gave up to cancer treatment, and I’m too busy trying to clean the house around Him! But I’m not particularly hard on myself for that. I saw similar things in Andrea too. Just days before her passing she was sharing about how guilty she felt for sleeping so much (her mind wanted to keep cleaning the house, but her body was failing). And yet at the end she accepted death was inevitable and she was begging for it to relieve her. I think God’s grace has a way of bringing us to the right place at the right time.
Another really poignant Bible story that illustrates this is Jonah’s story. It’s always been one of a handful of favorite stories, and Jonah is the one character I would pick whom I most identify with. This school year I have continued homeschooling Jared (who is in the 8th grade now), but have joined a group under the umbrella of a large, local, private Christian school. Jared can actually participate in graduation ceremonies through this school if he meets specific 8th grade graduation requirements. One of those is that he has to write and deliver a sermon in front of the homeschooling group of other 8th graders. Knowing Jonah is a childhood classic, and a short four chapters, we chose this story and character for the sermon. As Jared and I have been working through the chapters, over and over, going deeper and deeper each time, I am amazed again at how alive God’s Word truly is- for as many times as I have read and pondered Jonah’s story, each time I study it in depth I glean more from it. For years I thought of the big fish that swallowed Jonah as a sort of punishment for his disobedience. Sunday school illustrations of the story always show Jonah falling into the eager mouth of a hungry whale, as if he went straight overboard and into the mouth. But studying it again with Jared I realized that it wasn’t a punishment at all, but God’s mercy! That fish saved Jonah from a guaranteed death by drowning. Jonah was out in that raging sea, currents swirling about him, waves and breakers sweeping over him, seaweed wrapped around his head, and as he is sinking to the depths of the sea, God appointed an enormous fish to rescue him. I sort of felt like I was in the belly of a whale when I had my recent brain MRI. The last one I had was 2 years ago, and I forgot how tough those are. They cradle your head tightly, put large squishy plugs in your ears, put a 1 inch Velcro strap across your forehead and chest, immobilizing your head and upper body, and then place this cage-like device over your face as they squeeze you into this tube that makes all sorts of loud knocking and buzzing sounds. It’s a ‘don’t move for 20 minutes’ kind of deal. So the first appointment I had I really thought I would be ok. But it became apparent really quick that I wasn’t as tough as I thought I was. I started to have a panic attack in the MRI machine. So they brought me out and gracefully agreed to reschedule for another date, when I could come back with Al so that I could get some anti-anxiety drugs pushed into me. We did go back and I got a lot of that ‘don’t care about anything’ drug, but I still felt panicky. I was really grateful that they let Al stand in the MRI room, and he got to hold my foot as it poked out of the MRI machine. That, even more than the drug, was a comfort to me. This cancer has been hard on Al and I, on our marriage, on our intimacy. As a young couple we have had to face some tough issues. We have had to have discussions that most 30 year olds shouldn’t have to have (well, Al was 28 when I was diagnosed). And sometimes I get frustrated with his seeming insensitivity. But it’s days like when I have my biannual MRI and Al is right there, holding my foot, that I thank God for providing a strong husband to help carry the load. I guess that MRI machine is a metaphor for Jonah’s fish belly experience, because like Jonah, my experience with the MRI made me remember what was important. It brought things to my attention, reminded me of my limitations and of God’s sovereignty, and filled me with an enormous sense of gratitude for my husband.
That MRI experience also caused me to think about Justin. He recently went through OC (pepper) spray training, which is mandatory for all garrison law enforcement personnel. The training required that he got sprayed in the face and then demonstrate his ability to command and subdue a ‘suspect’. It sounds so much more harmless than it actually looks when you watch the videotape of it. That is just one of half a dozen really difficult training exercises Justin has been through in the last 15 months. I thought about all these experiences and how strong he is. In many ways he is my inspiration! In September Justin was able to transfer to a base here in California. It’s about a 2.5 hour drive from us. We’ve been really blessed to have some time with him the last couple months, as he was already issued orders to go to Fort Hood, Texas and leaves in August. Transitioning into parenting an adult child is a challenge and Al and I are groping around in the dark as we make adjustments. But after my diagnosis I truly didn’t believe I’d be alive to see this day.
Amanda’s growing up too. Some days I look at her and like with my MRI experience with Al, I am dumbfounded by the grace of God. She is nearing 17 years old, and I am so blessed to even be considering being alive to be there for her high school graduation. She is working so hard to achieve and maintain her grades (a 4.5 GPA) and it would be such an honor to be allowed to support her as she graduates and moves on to college. She’s always been my most challenging child, but her maturing process over the past year has really allowed her and I to soften our edges when we bump into one another, and I believe I’ve had some significant moments of connection with her as well. My cancer diagnosis came on Amanda’s 12th birthday. So while I’m sure she does remember a time when I wasn’t a cancer patient, it has overshadowed her entire adolescence. I don’t think it’s been until this past year that she’s really accepted that. Before now she always minimized my cancer and never wanted to acknowledge it as a legitimate ‘excuse’ for why we are the way we are, or she is who she is. She so frequently would respond to me by telling me that “cancer can’t be your excuse for everything, mom”. And while she does still lack some empathy towards me, she’s at least open to the idea of writing about ‘the cancer’ for her college application essays. I will never really know who my children would have been without the cancer experience. And they will never really know again what it is like to have a mother who is not a cancer patient. It’s an ongoing dialog in our family, between us, which I know they all get tired of as much as I do.
The most important thing we’ve had to talk about lately is my check ups. I continue to be NED. The whole body PET/CT I had at MD Anderson and the brain MRI I had at the cancer center here both show that there is no visible cancer. My circulating tumor cell count also continues to remain at a “0”. While none of these results absolutely mean there is no cancer in my body, right now everything is in check. I have even been allowed to change my treatment schedule from weekly to every three weeks (a three week dose is just a higher dose delivered every 3 weeks instead of a lower dose weekly). This isn’t really indicative of my progress, but just supports more recent research findings and allows me to gain back some of my dedicated treatment time to do other things. I’m still trying, one foot in front of the other, to gather as much normalcy as I can. And, as they say in cancer circles, to learn to accept the “new normal”.
I hope that your Thanksgiving celebration is not a time to just shop, cook, and clean, but is a time when you can sit at the feet of Jesus and listen!
Always in His Grace,
Aimee
