There and Back Again

I’m certain that it’s no coincidence that this is my 40th letter since I first wrote my humble plea for prayer in May 2003. For 40 days and 40 nights it has been pouring down rain. For 40 days my boat has creaked and groaned as it rocked in the turbulent seas. For 40 days the waters have both fallen from the sky and risen from the earth. And now, on this 40th day, I am ever anxious to pop open the hatch of this insulated vessel to behold the sun peeking through the clouds, suspended by a deep blue, and radiant sky. I am ready to feel the sun’s warmth caress my skin, welcoming me back to life, and to behold the rainbow, in full glorious color- a promise that although it may rain again, the rains will not drown me.

On Monday, March 7th, 2005, I went to the cancer center for my weekly Herceptin infusion, as I had every Monday at 4pm since August 2004. I had my usual dose and drip, and then saw Dr. Patel for my 3-month exam. All my recent CT scans were clear, so it wasn’t particularly an anxiously awaited visit. But I did want to talk to him about the possibility of stopping my treatment short. It had been something on my mind a lot recently, and something I had been discussing with my Inflammatory Breast Cancer e-mail support group. It’s something I had been praying about. But I wasn’t praying from outside in, but rather from inside out. God had already spoken to me about treatment, both in my dreams, and in my waking hours, and my prayers were more like, “are you sure, God?” When God speaks, He speaks. But I doubt. I worry about my motives, if my emotion is covering my ears. So I continued seeking confirmation. Although I didn’t get a firm external confirmation, I felt strongly enough that God had spoken to me about stopping treatment that I presented it to Dr. Patel. It wasn’t quitting. It wasn’t feeling overwhelmed and tired of treatment (although I was tired of it). It wasn’t walking away in defeat, falling short of the finish line. God reminded me that I had already failed a long time ago. He reminded me that my human strength was tried and tested, and that I did come up short, that I am weak. He reminded me that I gave up sometime back there, and that it was His strength that sustained me and carried me on. And now He was telling me, “enough. You’re done. You’ve been healed. Trust in Me and the healing that I’ve done”. And that wasn’t too hard of a thing to accept, because I was tired. But part of me did question it. “But I’m so close, Lord. I might as well just finish it out. You know, run through that yellow ribbon at the finish line, arms outstretched to the sky in victory, just to be able to say I did it, I made it, no regrets”. I want to be able to say I was strong, that I endured everything I had to in order to live. I want to be able to say that if my cancer returns, I had done everything I was supposed to do. But God said, “no, Aimee. That’s a victory you seek for your own glory. That’s a strength you want to claim as your own, but belongs to Me. Your testimony is not in how strong you have been, how much you endured. My glory is evident in the fact that when you were weaker than weak, I was strong. When you thought you could endure no more, I was there, and I provided you with everything you needed to endure it. And when I healed you, I healed you. You are looking to not have regrets because you doubt My healing, and instead, believe that this has all rested on you. Sure, you’ve had your part. You’ve done what I called you to do. But now I’m calling you to do something else- trust Me. There is no yellow ribbon finish line, because the race isn’t over”. Oh, ok, I get it. When Jesus said, “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world”, He was telling me that it doesn’t stop at cancer, that as long as I’m in the world, I’m still in the race (John 16:33).

So I went in to my appointment, after the usual ridiculously long wait that comes from being a patient of a sought after oncologist, and I dropped it on Dr. Patel’s lap. He walked into the room, and with his usual forced playfulness, immediately says, “so, I heard you were the lady who wanted 2 more years of chemo”. I promptly and seriously replied that no, that wasn’t true, and in fact, I was thinking about quitting treatment. After a brief discussion, Dr. Patel declared that he “had no problem with that”. In fact, no long-term studies of Herceptin have been done, and since I have been officially cancer-free since November 2003, well over a year, at this point continuing chemotherapy could be doing more damage than benefit. So we shook hands on it- that day was my last treatment (3/7/05). As far as the medical community is concerned, as of that day, I am done with cancer treatment and am in remission. Tri-monthly exams with Dr. Patel will continue, with CT scans semi-annually for a while. I have an appointment with Dr. Sales on March 31st to schedule a time when he can remove my port. They say it should be left in for up to a year after treatment, and some women prefer to leave it in indefinitely. But it’s aggravating my lymphedema and I have to continue on a restricted diet because of the anti-clotting medication I am taking. So, I’m over-eager to have it removed. I will ask that he do it under local anesthetic, because general anesthesia is torturous and I’ve been through enough. This will be my 7th surgery since the beginning of this ordeal.

So along with the transition from being in treatment to being in remission, comes the whole issue of healing again. God has physically healed me, whether that is through medicines, or His healing touch, or both. But the spiritual and emotional healing doesn’t come immediately upon cessation of the treatments. I have an appointment with Stephanie of Ink Ink Tattoo in Venice in April. She’s excited to talk to me about my “project”, as she’s been looking for a woman like me for over 2 years. Apparently, she says, she has a calling to do the type of tattoo that I am wanting, but has found that nearly all women get immediate reconstruction after mastectomy. I can already see the Holy Spirit “dust” left behind on the trail up ahead. And I know that Stephanie and I will have a lot to offer one another. I am also anxious to get the tattoo process itself started. It’s not just the ink, but also the needle- the subjecting myself to it, the noise, the pain, the heightened senses. The process. And the creation that results. If I have to explain, you wouldn’t understand. It’s just about healing. I’m also still planning my “coming out of treatment” party for August. It will be a Caribbean/ island theme party. And if nothing else, we’re having a whole lot of fun planning it, and are excited to bring together the friends and family who have been most touched by this cancer experience.

So this party and time of transition, and even the joy in my life I find in being in remission, is not a mark of the end of the finish line. Jesus said we will have troubles. Plural. Not one, not two, but many. And for whatever reason, I’m not done being tested. Our growing family unit is being tested. Cancer is really just a part of that. Albeit a big part, it’s just a part. Last weekend, March 18th to be exact, Amanda made a grievous choice to overdose herself on extra-strength Excedrin. She took 13 pills. She’s physically fine, a week later, but she became violently ill from it. At the emergency room she was required to drink down a thick, black, liquid charcoal mix to try to absorb some of the medication still in her system, and also a small cup of potassium. She vomited both back up, and watching her go through it, the bringing it back up looked even more torturous than the swallowing it down. Poor girl has emphatically declared she is never taking another pill for a headache again. She seems to have learned a hard and dangerous lesson. She’s very lucky to not have caused permanent liver damage from the acetaminophen. But of course, we’re just as concerned about the psychological and spiritual issues at this point. Justin’s also had a rough couple of weeks, breaking up with his long-time girlfriend twice. This seems to be a more permanent break-up at this point. I’m proud of him, because we talked at great length and he seems to be making the right choice and for the right reasons. But it’s been hard on him, and he’s certainly taken it out on me in many ways. Jared’s his usual self- getting suspended from school for fighting. He seems to always be the innocent victim of someone else’s issues. Jared is nearly 10 years old, but he remains innocent and so naïve that it gets him in all sorts of trouble. It’s not the kind of innocent where he doesn’t do anything wrong. He certainly does. But his wrongdoing is innocent, if that makes sense? Jared’s the type of kid who gets in trouble for discovering the electric stapler on the teacher’s desk. And this fight that got him suspended was more a part of learning he’s almost 10 now, and other 10 year old boys are out to establish they are men, than it was about Jared being some rough and tumble boy. So that’s always a struggle for us, and we continue to pray that the list for the magnet school program he’s signed up for opens up. Al’s been out of the house more days than in it lately, as he continues to have to cover for a co-worker’s fraudulously long workman’s comp leave. It’s almost as if I’m raising this family on my own, and his leaving and then assimilating back in is a challenge that is putting pressure on our marriage too. And now there’s Larry. Larry’s still trying to find his place, his limits, and his freedoms in this dysfunctional family of ours. Along with Larry comes his sister, Georgia, who now calls every day wanting to come visit. She’s been in her foster home for 3 years. But now she’s saying she doesn’t like it there, and wants to come live with us. In our hearts we have heard God’s voice gently remind us what the right thing is to do. But in our minds, it seems an impossible task- raising 5 kids, 4 of them teenagers? The idea of taking in another teenage girl after my own daughter has overdosed herself on pain medications, doesn’t sit well with me at this point. And yet, there sits Larry, one foot in our family, one foot outside of it. And he’s certainly got issues of his own. I’ve asked a very good and trusted friend, who shares a faith in God and has an intuitive and gifted sense of the psyche, to do some family therapy with us. We start that next week.

While I’ve been on the downside of the mountainous climb back to my life, or health, or “normalcy”, it’s been just as fraught with troubles. In fact, this mountain climb has been an east/west climb. The sun ahead of me has motivated me on. I have watched it rise, streaming it’s brilliant rays over the mountain horizon, following me throughout the journey. But now that I’m on the other side of that mountain, the sun sets a whole lot earlier, and the mountain casts a deep and cold shadow. It’s not that God’s not in the dark places too. He is here with me. It’s just that I so anticipated the downward climb that I didn’t consider how dark it could be. If there’s one criticism I have of Bilbo Baggins’ tale, it’s that the journey back was too absent from his story.

So with all that’s been going on, it’s no wonder I’ve had those darting thoughts: “how much more shit can you give me, God. How broken do you want me. Is your Grace really sufficient?” And the only answer I received was a call to fast. So I’ve been on a weeklong fast, even from all medications. It has really put me in the mind of identifying with the sufferings of Christ this week, as we approached Good Friday. We, along with 7 children (we seem to be starting a small youth group in our home), went to church to watch a Passover Seder, and then came home to watch The Passion last night (Good Friday by calendar). I broke fast with bread last night. And I watched. Clarified by the fast, what came to my focus was the fact that not only did Jesus accept the cross, He embraced it. I continued to think, each time He fell in that movie, that I would have just ended it right there. I would have let them beat me to death right there where I laid, wishing life to end sooner, and not willing to endure anymore. But He didn’t. I would have refused to carry the cross, saying, “you’ve beaten me to the point where I can’t do it. I refuse to do it. So if you want to kill me right here rather than up there, go ahead, because I’m not going any further.” But He didn’t do that. Each step, with as much effort as it took, with as much physical pain He endured taking it, He took not as some passive Christ in submission, but with determination and purpose. It didn’t just happen to Him. He embraced it. He had to carry that cross to the top of Golgotha. If only I could learn to identify my trials and sufferings with Christ more often, maybe I could consider them pure joy, as the Apostle James suggested.

I’m looking forward to getting up and watching the sunrise on Easter morning. While my journey is far from over, and the finish line still off in the distant view, I have come down off the mountain, and now stand at it’s foothill. All I know of cancer is all I can see by turning around and looking back. Granted, what I saw, heard, smelt, tasted, felt will be with me as I continue on. So in that sense, I have taken this mountain experience with me. And in that there is never fully closure. It will walk with me as a part of my journeys, wherever they take me in the future. But it is behind me. These surgeries, radiation and  chemotherapy treatments, the needles, the stares, the loss of hair and dignity, the fear of death in their eyes, are behind me. And in an effort to keep it there, to close a chapter in my life, I have chosen that this will be my last writing. In reviewing this decision, in looking back, I have felt somewhat disappointed that the window I offered was so small. There’s so much I didn’t write about, talk about: My relationship with my parents- with my mother. My marriage. How my sexual intimacy with my husband has been profoundly affected. The full extent that chemo physically seized me- vomiting so violently I peed my pants. The time I told my daughter, in utter frustration and anger, that the stress she caused me was probably the reason I got cancer. And the time my son told me that he didn’t care if I died. Yes, I have left the gore out. In part, I have wanted to preserve something, and not give honor to other things that were far uglier than I’d like to remember. I have wanted to protect my family from sharing things that would hurt their feelings and leave them too exposed. Whether consciously intentional or not, my confidant tells me that this writing has been about me and my cancer. My relationship with cancer. Sure, my relationship with my mother, my husband, my daughter, is both influenced by and influences my relationship with cancer in the same way that my relationship with my mother effects my relationship with my daughter. It is all inter-connected in some invisible way. But for whatever reason, this has been about me and cancer. And because of that, large pieces of the picture are absent. But perhaps rather than a large window, overlooking the entire mountain, I have been able offer a much smaller window, magnifying particular aspects of this cancer thing. If nothing else, I hope I have offered some humanity and insight into the world of cancer. I hope that through me, God has built empathy for those who suffer from cancer, and that we can all learn to not turn away from sickness and death because of our own fear, but offer love, hope, and encouragement in the face of it. I hope these writings, that evolved from e-mail updates into essays of inspiration, can not only serve as marking posts as I look back over my own life, but can serve as light posts for others who are amidst the darkness following behind me. But more than anything, I hope that God’s real presence has been evident through me. May you find new hope and joy as you watch the sun set each morning.


Always in His Grace~

Ephesians 3

14   For this reason I bow my knees before the Father,

15   from whom every family in heaven and on earth derives its name,

16   that He would grant you, according to the riches of His glory, to be strengthened with power through His Spirit in the inner man,

17   so that Christ may dwell in your hearts through faith; and that you, being rooted and grounded in love,

18   may be able to comprehend with all the saints what is the breadth and length and height and depth,

19   and to know the love of Christ which surpasses knowledge, that you may be filled up to all the fullness of God.

20   Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us,

21   to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen.

New American Standard version

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