Joy in the Midst

In honor of Breast Cancer Awareness Month … my memories from the day I lost my hair due to chemo.

I woke up that morning, and my scalp hurt. It was a strange, exquisite kind of tenderness, a bit like the feeling when you let down a high ponytail you’ve been wearing all day. As the hair falls, after being tightly pulled in the up direction, you can feel it throb into the follicles.

I reached my hands up and gently pulled on the hair, trying to relieve that bizarre ache, and it came away in my hands. I sat up, and looking at the clump in my hand I felt no emotion at all – – only wonderment at the knowledge that I alone held in that moment: today was the day I would lose my hair.

I didn’t want this to freak out my children. I wanted it to be funny for them, a joke. I wanted them to laugh. So, we went outside. It was a breezy, beautiful spring day. Scan 49I said, “Look what Mommy can do,” as I pulled handfuls of hair out and let the blond strands go on the wind, floating out of the yard, over the fence, down the street. I said, “We can check birds’ nests this summer, and see how many have Mommy’s hair in them.” My two-year-old ran around, giggling. My eight-year-old, quiet and absorbed, was harder to read, but even she couldn’t help but catch some of the hilarity of it. I, too, laughed.

As the day progressed, the pain became intense. When my husband came home that night, I told him I couldn’t bear it and asked him to shave my head. He buzz cut the longer hair off, then used a razor to shave to the skin. The relief was immediate, as the hair was no longer there to irritate the scalp. I went to the bathroom and looked in the mirror and thought, “This is me.”

This is me.

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Self-Improvement Makes Me Cry

My life, at the moment, is one huge self-improvement project. I seek to sweep out the clutter, not just in my physical environment, but in my internal one as well. I’m currently in an adult project with my homeschool commonwealth, and I’ve decided to share a paper I recently wrote for that project. We read A Christmas Carol by Charles Dickens, and our assignment was to write about what we would need in our life to bring about change, in the same manner that the three spirits brought about change for Ebenezer Scrooge. Well … here it is.

Flower_Buds

If one were to ask me what is the most important change I need to make in my life, I would respond that I need to be more fit. I need to improve my level of fitness because I have chronic aches and pains, I lose energy midday, and I still carry around the baby weight from my last pregnancy – TEN years ago.

There is a disconnect, however, between knowing what needs to happen and having it happen. I have tried many programs of exercise, but none have had staying power. Something inevitably happens to derail me – either my back starts to hurt me, or my sinuses clog up, or my schedule gets crazy and I miss too many days. So, what would need to happen for me to make a change that is lasting?

In A Christmas Carol, Ebenezer Scrooge is visited by three spirits of Christmas, and in showing him his life from a new perspective, they are the catalyst of life change in Scrooge. They changed him because they helped him see the truth of his life in a way that was shadowed to him previously. They turned on the light, so to speak.

In my situation, I also need the light turned on. In thinking about it, I’ve drawn a couple of conclusions about what will make that happen. First, I need to really know myself, and understand what will work for me and what will be possible to maintain. Second, and flowing out of the first, I need to recognize, face and clear the underlying emotional and spiritual issues that prevent me from changing.

In order to know myself and predict what will effect lasting change, I look to another area of my life where I have recently experienced success in bringing about change. This area is in my home, in bringing about order and clearing out clutter. This is another situation in my life where I tried many programs, many systems, and never achieved success… until now. What has changed? I’ve finally changed my perspective and started looking at my physical space through spiritual eyes. I recognized that emotional issues have been preventing me from experiencing the change I longed for, and I started to prayerfully deal with those issues head on. Additionally, I started to view organizing as an act of worship, as I bring order from chaos as God did in the beginning. In short, I’ve begun to perceive the value in my home keeping goals as it relates to my walk with Christ, and doing so has given me hope of lasting results.

So how do I relate my level of fitness to my walk with Christ? I think the answer is twofold. The first part isn’t hard, and involves simply acknowledging that when I feel better and have more energy, I’ll be able to accomplish more. Also, when I feel better physically, I naturally feel better emotionally, and I’ll want to accomplish more. This “more” isn’t just consistency in my devotional time, but also a greater capacity to serve, to love, and to do the practical things in living out my faith.

The second is harder because it involves belief. If I truly believe that my body is the temple of the Holy Spirit, not as a metaphor but as a reality, then I will be driven by love and gratitude to care for my body. And therein lies the crux…

Love and gratitude.

Love and gratitude, not just for God Himself and for the gift of the Holy Spirit dwelling within me, but for this body He has given me.

Yes, love and gratitude for this body He has given me. This. This. This is my great struggle, and this is the critical thing I must face if the light is going to come on and stay on and shine into this part of my life. You see, I don’t feel love or gratitude. In fact, if I’m completely honest what I feel is ugly to admit and unbelievably challenging to face. What I feel is anger.

I’m angry that my body is covered in scars. I’m angry that I still experience nerve pain, and scar tissue pain so many years post surgery. I’m angry that my breasts aren’t my own. I’m angry that they had to dissect my back muscles to help reconstruct what had been destroyed. I’m angry that my chest wall is numb and I can’t feel my husband’s touch. This anger must be directed somewhere and so it is directed at this body that betrayed me, this body that bears battle scars from a war I never wanted to fight.

I’ve had people tell me that I should be amazed by my body, by its ability to heal and survive and adjust. And although I know this to be a true thing in my head, I cannot force my heart to agree. So how do I release it, how do I clear it, how do I get rid of the exquisite tenderness I still feel when I think of what cancer has left me with? What will be the equivalent of three Christmas spirits in my life that will help me turn a head truth into a heart truth?

The answer to this isn’t an easy one. It is a work, not some magical one-night experience. Every day, I read the quote I have taped up to my kitchen window. It says, “On every level of life, from housework to heights of prayer, in all judgment and efforts to get things done, hurry and impatience are sure marks of the amateur.” This isn’t a race. This life change I seek will not occur overnight. It will occur as I engage in the work.

This work will consist of different things, all necessary and none sufficient on its own. I know myself, and I know that setting a long-term goal could be very discouraging for me if I don’t see results fast enough. So I won’t set one. I’ll only set a goal for today. I’ve had measurable results using EFT (emotional freedom tapping) in other areas of my life, so I will turn that work toward my relationship with my body, and I will gradually clear the ugliness away. I will pray. I will work my muscles and breathe deeply and drink more water and be more intentional about nutrition. Yes, today I will do those things. I have the strength to commit to today.

Then tomorrow, I will rise and I will ask myself if I have the strength to commit for one day. Past failures are irrelevant. Future successes are like fog on the horizon. All that matters, and all I can control, is what I choose to do today. So today, I will engage in the work. Each day, I will choose, and when my choice is, “do the work,” I will mark it as a small step toward the light.

Not Idle

Well, dear reader, I’ve taken a major hiatus from writing, but I haven’t been idle. If you remember from a recent post (and why should you, because by recent I mean several months ago), I downloaded a book onto my kindle about the spiritual roots of disorganization. I then proceeded to lose my kindle. I searched everywhere I could think of, but no…. it was surely and truly lost in the shuffle. I believe this can be classified as ironic.

It was lost for about four months. (Yes – four months! Egad!) Then one day, my husband says to me, “What have you done with my electric razor charger?” (Asking me what I’ve done with something is a running joke in our house. I, of course, have not touched his charger. He loses things too…) He told me he was charging his razor overnight, and he didn’t want the light that flashes while charging to keep me awake, so he didn’t do it in our bathroom, but instead (he was certain) he charged it in the schoolroom. So, I proceeded to turn the schoolroom upside-down, in an attempt to locate it. And lo and behold, peeking out from between the modem and the edge of the computer desk, covered by a small cloth, was…

I don’t even have to finish that sentence, do I? No, of course not, because in this most perfect of hiding places, as if I had hidden it on purpose, is my KINDLE!!! For the love of Pete, why, oh why, oh why would I put it there? That, my friends is the question.

The charger, since you’re all dying to know, was ultimately located in the medicine cabinet of the downstairs bathroom, the most logical place for it to be. Alas.

On with the story…

The book on my kindle is Organizing from the Heart: Change Your Mindset, Conquer Your Challenges. It’s a workbook of sorts, and I’ve committed to working through it. The first question I had to ask is,”What is disorganization costing me?” I prayerfully considered it, and I finally wrote in my journal, “I feel shame.” Admitting that was an incredibly powerful moment for me. I also wrote in my journal that the last time I felt organized in my home was when I felt consistently good physically (which was really pre-cancer) and when money was not a stressor (also pre-cancer). Cancer, for me, was like tripping during a foot race, landing hard on my hands and knees, and never managing to get back up on sure footing. We call 2007 our Cancer Year, because I was sick for nine months of it. I was hospitalized multiple times, and on two of those occasions there was a real risk that I wouldn’t leave the hospital. Having the management, the control of my life wrested from me so completely, knocked me flat in a profoundly internal way. What happened in 2007 is that my ability to believe that God wants good things for me, in fact the best things, was violently shaken. There’s a major lesson in Trust within this, one I’m still grappling to get hold of.

And so, after SEVEN years of dealing with things on the surface, but never digging deep (for instance, cleaning my house on a schedule but never cleaning out a closet, either physically or emotionally), I’m FINALLY ready and willing to deal with the root spiritual issues. I have this vision of my home being peaceful, open and soothing, a place where we can love God and love one another, and with this in sight, I’m taking a stand. I’m committing to cleaning out the ashes and rubble so that new things can grow.

In pursuit of this, a few days ago I stood in my laundry room (the place I have chosen to start) and I engaged in this spiritual work. I thanked God for this room — it really is quite awesome — and for all the things stored there: games, puzzles, winter wear, and cleaning supplies. I thanked Him for the new high-efficiency furnace and water heater we’ve recently installed. I then tapped through every negative feeling that I’ve had regarding organizing. (You can look at  Conquering my Emotional Kitchen for an explanation of tapping). I also, while tapping through the circuit, thanked God that I am created in His image and, as He brought order from chaos, I, too, can bring order out of chaos as an act of worship. (I’d like to say here, there’s nothing magical about tapping. Tapping while praying just helps me, on a deep emotional level, to internalize the promises of God).

Then I simply started. I’m about a quarter of the way through, and I’ve already had this beautiful, symbolic moment. I came across a bag, filled with thin books and papers, and I sat down with it to sort through it. I thought it was music, but it wasn’t. It was a bunch of cancer support materials. With a sense of lightness I walked out to the trash, and dropped it in. It was freeing.

Bit by bit, moment by moment, I clear out the old and dead and make room for a new thing.

NotIdle

Courageous

I haven’t been writing because I’ve been having such a struggle to even stay on my feet lately. I have felt my energy draining away. I’ve been experiencing sudden faintness – like when I climb several stairs, I get so light-headed I have to sit down. There’s nothing quite as frustrating (and exhausting) as knowing something is wrong in your body, and not having any idea what it is. I’ve had seemingly countless needle sticks as the doctor has done test after test. I even joked with my husband that I was developing needle tracks and people were going to suspect that I was using drugs. I had a CT scan and a chest X-ray, but everything was normal. And then finally – my doctor ordered an EKG, and it was abnormal. Now, having an abnormal EKG isn’t really something to celebrate, but at least we had found a clue in this great mystery.

Next came a treadmill stress test, the one and only purpose of which is to detect clogged arteries. Well – my arteries aren’t clogged. In fact, the cardiologist told me I was “fit” which nearly caused me to laugh out loud (see the above comment about having to sit down while climbing stairs). During the test, as he was explaining what to expect, he told me my blood pressure would rise. The diastolic would level out at 90 (which it did) and the systolic would continue to rise throughout the test (which it did, until….). About seven minutes into the test, when I was working really hard – going 3.5 mph at a 14% incline – I nearly fainted. The systolic suddenly dropped 50 points, and the diastolic 30. This was, apparently, unusual. The advice of the cardiologist as I was leaving the hospital was to “get my head down if I felt faint.” Really. That’s what he left me with.

Over the next few days, in talking to my doctor I learned that she had ordered a med study and consulted my oncologist. The suspicion is that my cancer treatment has caused damage to my heart. And so today, I had an echocardiogram (a sonogram of the heart) to look at valves, blood flow, and my heart’s general structure. I have no results, but at least the test is done.

Now, with my cancer, I felt very little fear or worry. As I would approach each new step, I mostly felt … nothing. I don’t know if this was peace, faith or simply ignorant bliss, but that’s how it was. This is different. Yesterday, I was just trying not to think about it, but I felt uneasy. I spent some time trolling facebook and saw a post on my niece’s wall that said, “Josh 1:9 Have not I commanded you? Be strong & of a good courage don’t be afraid don’t be dismayed for the LORD ur God is w/ u wherever u go.” I hate to admit this, but I burst into tears. I mean seriously, I was sobbing. I realized, quite suddenly, how alone I felt in all this. I didn’t feel God with me at all. This was just too much – hadn’t I been through enough already? Where was He? I finally confessed how angry I felt that I couldn’t just be healthy. Why this? Why my heart?

After I’d finished spewing, I ultimately said, “God help me. I need to know you’re with me.”

And then I went about my day. God is God and He speaks in very strange ways at times, and this is what happened. Just after dinner I was putting a load of dress shirts in the laundry. Hanging on a nearby rack was a little craft my youngest daughter had made, a circle of card stock hanging on a string that she could wear like a necklace, and it caught my eye. I have no idea when she made it. I have no idea how long it had been hanging there. I had never looked at it before. But it grabbed my attention in the most bizarre way, so I reached out for it. On one side was her name spelled out in glitter. And on the other it said …

Trust me dear reader, this was God speaking. I felt an immediate, palpable calm settle over me. I knew I was not alone. So, today is not much different than yesterday. I still don’t know what’s going on. I still feel kind of awful. In real terms, nothing has changed, with the exception of one thing.

Today, I am courageous.

Praying Circles

I haven’t been here in, well … forever. At least it feels like it. My summer didn’t shape up quite like I envisioned. Instead of having a super productive summer, I’ve had about four months of almost daily headaches. I’m tired. And it’s hot.

But…

It is a new season. Not literally, you know, but my kiddos are back to school and that is a mile marker in our year. My older daughter decided to go back to her Early College High School for 10th grade, and my younger daughter is homeschooling. And so, although I have many projects I want to do in my home, and in myself, I’m going to spend some time focusing on my health. I feel myself slowing down, like a car running out of gas, so I’m changing some things.

First – I’m seeing a chiropractor a few times a week. This has definitely helped the headaches, but has not yet touched the tiredness.

Second – I’m trying to juice at least once a day. There are many health benefits to fresh juices, but my main goal is to get raw food nutrients every day.

Third – I’ve started, just this week, keeping a food journal. I’m trying (not always succeeding, but trust me, trying) to be very thoughtful about everything I put in my body. I realize that my system is probably toxic – I’ve had cancer with all the ensuing treatments, and still receive medical therapy (in the form of a daily pill). I was reluctant to write down everything I eat because it seemed obsessive, but it has actually been really helpful. I have someone who will be reading it, and that accountability makes me pause and think before I eat anything, always striving for the most nutrition per bite that I can get.

Sometimes I look at really healthy people – physically fit, boundless energy, perfect weight – and being healthy seems like an impossibly hard goal. However, I’m currently reading The Circle Maker, a book about prayer, and I’m daily circling the following promise like the Israelites circled Jericho. Eventually, those heavy walls of fatigue and pain will fall.

“The thief comes only to kill and steal and destroy; I came that they may have life, and have it abundantly.” John 10:10

Echos ~ Scars ~ Tracks in New-fallen Snow

My right shoulder muscles have been abused by the circumstances of life. I had breast cancer on the right side, resulting in the removal of thirteen axillary lymph nodes. This caused scar tissue and tightness under my right arm. Then radiation therapy (don’t gross out here) melted the underside of my skin, causing it to fuse to the bone where it is permanently stuck. This causes some tightness across my chest. Then, I had reconstructive surgery where a large portion of muscle in my back was dissected and tunneled forward under my arm to my chest. In fact, the procedure is called an LD Flap – LD for latissimus dorsi and it’s a flap because the section of muscle is left attached to its blood supply. This means that if you press in the exact right spot on my back, I feel it in front. It also means that when everything comes together wrong and I have pain, it’s a shooting pain across my chest and an agonizing ache around my shoulder blade. It doesn’t happen often, but when it does I can barely function.

This is where I was last night. As my husband massaged the shoulder to try and relieve some of the tension so I could sleep, I reminded him that four years ago I was in the hospital. Four years ago, on July 2nd, I spent six hours on the operating table having a bilateral LD-Flap. We talked briefly about everything that led up to that point, and then everything that has resulted from it, and I found tears pricking my eyes as I said, “Stupid, stupid cancer.” But then I told my husband that it is what it is and there’s no point in feeling sorry for myself, that it serves no purpose. I need to buck up and get over it. But my husband, very gently, said, “LaRae – I don’t think you’re feeling sorry for yourself. I think you’re feeling human.”

We turned out the light and I lay there thinking about those tears. Was it “human” to cry four years after the fact or was there something wrong with me? I thought about my story, the one I didn’t write but was faced with living.

I thought about the fact that I had immediate reconstruction after my mastectomies. I had tissue expanders put in that were meant to gradually stretch the skin, eventually being replaced with silicone implants. As far as I got with that procedure, I remember being very happy with how I looked and how I felt. But then I developed a life-threatening staph infection. By the time I was admitted to the hospital I was feverish, my skin was so sensitive I felt like I was being pricked all over by a million needles, my joints ached, I was nauseated and I couldn’t lift my head off the pillow. I was becoming septic. One expander had become infected and the other was surrounded by fluid that was likely to become infected, so they had to come out. It was only after the fact that my nurse told me I had scared the living daylights out of everyone. But the real blow came when I thought the hard part was behind me. My surgeon informed me that the antibiotic hadn’t really “killed” the staph. The staph had colonized right above my heart and for the rest of my life my immune system would engage in a freakish dance with the bacteria, maintaining a delicate balance of health in my body. But we could do absolutely nothing to disrupt that balance. It meant he wouldn’t reopen the wound. It meant that I couldn’t try expanders again. That ship had sailed. I had done my research beforehand, so I knew my only other options for reconstruction involved cutting muscles in my belly or my back, both of which seemed utterly barbaric. I was devastated.

I thought about the day 14 months later when I finally went in for the LD-Flap, and the ambivalence I felt. I didn’t want the surgery. I was dreading it. But I didn’t want to continue living as I had for the past year, either. The two times I attempted clothes shopping had ended with me crying in the fitting room because nothing fit right. I had an abrasion, a permanent bruise really, from the seatbelt in my car constantly rubbing across my sternum. I had to wear a T-shirt over my swimsuit to go to the pool with my girls because my suit gaped in a shocking fashion. And one time my little one, two years old at the time, walked in on me as I dressed after a shower. Her eyes widened as she caught sight of my scarred chest and she said, “Oh, Mommy. How did that happen?” I had no answer. All I could think is, “How, indeed?”

I thought about waking up in the operating room, with everyone frantically running around, hearing words like “pooling blood” and “venous congestion.” I heard the anesthesiologist ask, “Should I re-intubate her?” as I was jerked around and bandages were ripped off. I grabbed the hand of the O.R. nurse and asked what was wrong. I remember his classic deer-in-the-headlights look as he realized I was awake and talking when they weren’t finished yet.

I thought about that first night in the hospital. The pain was tremendous, and something I learned much later is that I metabolize drugs extremely quickly. This is why with five surgeries requiring general anesthesia, I woke up clear-headed and completely aware while still in the O.R. three times. This hyper-metabolism impacts the way my body responds to narcotic pain meds. So, although I had dilaudid in a pain pump, it was having virtually no effect. My nurse that night was a heavily-muscled, dark-skinned, bald-headed man named Kendall, who looked more like a bouncer than a nurse. He didn’t smile at me one time. But he was God’s angel to me that night. He knew pain and he knew I wasn’t faking it. He gave me six “rescue doses” during the night while he tracked down a physician who would change my orders, ultimately doubling the amount of dilaudid in each dose. When I got that first doubled dose, I felt the blessed, merciful effects as the medicine hit my bloodstream. I smiled at Kendall and said, “It’s finally working.” He told me he’d given me enough medicine to knock a man twice my size flat. He said that people receiving a normal dose of dilaudid hallucinate and try to climb out the window – yet, I wasn’t even slurring my words. All I could do was thank him for advocating for me, then thank God for giving me the bouncer-nurse instead of some shrinking violet who wouldn’t have fought for what I needed.

I thought about coming home, and how I cried multiple times every day for two weeks. I think my husband actually began to worry that I was having some kind of breakdown. The sanitized literature they gave me describing the surgery said, “Most mastectomy patients find deep emotional satisfaction from their reconstruction.” But I felt one emotion and one emotion only ~ regret. The pain was out of this world; I couldn’t lift my arms over my head; I had to sleep propped up; I couldn’t dress myself; I couldn’t wash my hair. I absolutely hated how everything looked. I thought I might never feel like my joyful, even-keeled self again.

But last night I wasn’t crying over any of these things. It took three more surgeries but I did achieve results I can live with. And all these events, difficult though they were, were simply moments in time and they have passed. It’s over. They’re just distant memories. No, my tears were caused by something real that still lives in my heart. It’s like an echo. It’s like a scarred-over wound that still occasionally feels tender and gives pain. It’s like tracks through new-fallen snow – the landscape is marred; it will never be the same. As a Christ-follower, I have had some very well meaning Christians tell me, “Give it all to Jesus. Just lay it at His feet.” But I don’t know how to do this. Seriously, how do I unburden myself when my very being is inextricably tangled up in the whole mess? I don’t know how to give it away. So instead, I seek to trust Him. I look to Him and His Word for strength. I strive to live in my joy. And I keep my perspective.

You see, I could fill an entire page (maybe the back, too) with problems and challenges I still face because of my cancer. Yet, put on a great balance, all these things will never outweigh what is on the other side of the scale. I am alive. Sometimes my days flow easily. And sometimes I struggle to live the life I want to live, to be the mom, wife and friend I think I should be. Some days it’s hard to joyfully face life with these echoes reverberating, sometimes manifesting as physical pain. But each and every day, I am thankful for the opportunity to try.

Day 130 ~ A Raised Bed Garden

Well, I’ve been gone a long time (almost two weeks). To be honest, I haven’t been feeling well, which hits me periodically since I had cancer. I’ve never come back to 100%, which I don’t quite understand. I wish I could find the solution. Ah, well…

Part of the journey I’m taking involves working out what it means to live missionally. We all should be the author of our own story, creating as we go. We are, after all, created in the image of God who created all things. I think the bug to be creative exists in most of us, but sometimes it gets squashed. For me, especially when I’m not feeling superb, the simple struggle of everyday existence can leave me with no energy left to create. But existing is depressing. Living is what we are meant to do. So today, I’m putting everything aside and trying something new.

Today, I’m spending time in my garden. My husband and father-in-law built me a raised bed garden for Mother’s Day. I’m slightly terrified because I’ve never grown anything but flowers, and I’ve managed to kill a fair number of them. And some, like these roses, bloom in spite of my best efforts.

But I love other people’s gardens. And I love food. So I’m trying something new and praying it all survives till the harvest. I’m planting a few seeds that a friend brought back for me from Monticello, the home of Thomas Jefferson (and hoping I’m not too late). Then I’m also planting tomatoes, basil and oregano, because I have this vision of myself making my own pasta sauce. I’m starting small – this is my trial run. We’ll see where it takes me.