Recommendations for Newly Diagnosed Patients

1. Don't despair! The diagnosis "breast cancer" sounds horrible, but women go through this every day and come out strong and go on to live healthy lives. And don't obsess about how you got it  -- I lived a healthy lifestyle and had no known risk factors but got it anyway. My oncologist said that's true of most patients.
2. Bring someone along to early doctor appointments, not only for moral support but to write down all the information and next steps. It's overwhelming to suddenly find yourself a (potential) cancer patient and confusing to remember the many, many details while in the middle of such an emotional situation.
3. Start a folder or 3-ring binder for all the information you'll be given. Again, have the person who accompanies you to appointments write everything down for you so you can just listen.
4. Check the public library for the most up-to-date edition of Susan Love's Breast Book. It's a great resource for any woman -- diagnosed or just concerned about breast health. It's detailed and all-encompassing . For a quick resource that covers the basics, try: http://www.breastcancer.org/symptoms/types/idc/treatment/local.jsp
5. Get plugged into a group of local survivors and/or patients. They are brimming with practical advice and can guide you toward nearby resources. It should be easy to find a group through your local hospital, your breast surgeon, or YWCA 
6. Usually the breast surgeon is the consulting doctor who gives you the most information. She/he should be pro-active in addressing your concerns (should know what patients need to know) and should tell you who to contact if you think of more questions after your appointment (most breast surgeons have a very caring staff and/or give out their email address). If you are not comfortable with this person and their staff, ask around to find another doctor. Also, unless you have any unusual or life-threatening case, it shouldn't be necessary to seek out The World's Most Famous and Highly Acclaimed Doctor -- most treatment is standard (not including reconstruction; see below). But you'll might feel better if you get surgeon recommendations from other patients or meet other patients with the same surgeon as you.  
7. Breast reconstruction should be covered by most insurance companies and -- to me -- made a major difference in my emotional well-being during and after treatment.  I recommend interviewing several specialists, because philosophies and techniques vary HUGELY. Some do quite drastic rearrangements of your tissues... There are many options available, and YOU should be allowed to chose among them. If you don't like a particular doctor's methods or feel that he/she is pushing you to accept their preferred technique, try someone else. A local support group is very helpful for learning about reconstruction options (assuming the participants aren't all using the same medical group) or final results.

Advice for Others

It's such an honor when a friend or acquaintance (or friend's acquaintance!) confides in me about her health and asks me to describe the early steps of breast cancer diagnosis and treatment. On one hand, it's disturbing how many people are diagnosed or have "a scare". On the other hand, I love being of use to others, to share what I've learned, to be that voice of experience I needed in my own frantic early moments.

I haven't forgotten the fear or confusion:

• I remember obsessing about risk factors and toxins in my environment and HOW COULD THIS HAVE HAPPENED TO ME????
• I remember the worst-case-scenario thinking when my lump was first found: imagining my children as motherless before their eighth grade graduations; crying at the thought of missing Sally's wedding or never meeting Huckle's firstborn child. Picturing all those Kodak Moments without me...
• I remember the frustration of health insurance -- the difficulty finding providers nearby; being told by my ob/gyn that I needed to find a breast surgeon to get a diagnosis and then being told by surgeons' receptionists that they had no appointments available for at least 1 month unless I already had a diagnosis.
• I remember being unable to read about cancer, being frozen with terror. As a researcher with sufficient background to understand medical jargon and sufficient interest to typically love reading up on medical conditions, I was very surprised at my inability to read about my own condition.

When women confide in me, they are often apologetic. "I didn't want to burden anyone with this," they say when they find a lump or are scheduled for a biopsy. "I'm sorry to ask you this."

My dear friend, please let me share this burden with you. It's a privilege for me to be your confidante and friend and prayer partner. You should not face this alone. Sometimes I felt so scared that I could not think or pray or do anything; I was frozen in my fears, unable to make decisions, or separate what "is" from what "might be".

"It's probably nothing," you say. My dear friend, I hope it is nothing. But please don't feel you need to minimize this valid concern. The lump might be nothing, but the fears are not nothing -- they are genuine. How do you cope with fear?

For many women, it helps to tell someone, whether a spouse or a parent or a complete stranger. Talking about our problems aloud -- voicing our fears -- is the first step in moving forward. Also, before you "protect" your family by not sharing your fears, think about how you would feel if they didn't share their valid fears with you. Do you really feel burdened when someone close to you confides in you, or do you feel privileged to journey beside them or closer to them because they trust you? You might be surprised by who rallies to your side when things get tough.

But I have another, much more important way I cope with fear: I cope through prayer. I am a Christian, a follower of Christ. I believe, as taught in the Bible, God is both all-powerful and all-loving. His ultimate goal for you is to have you by his side in heaven for eternity -- the perfect friendship with the perfect Friend who never lets you down. Yes, life here on earth will be tough. It just is. That's not a sign that God doesn't love you or isn't powerful enough to makes things go smoothly for you. Rather, God uses this sometimes rotten world to draw us closer to him -- to prove his allegiance to us and let us grow our allegiance to him. Prayer is calling out to God in our fear or frustration or joy or sadness. It's like telling a trusted friend all your hopes and fears. The difference is that this Friend listens perfectly, cares perfectly, meets our needs perfectly -- his plan for you cannot be frustrated or fail, no matter what happens on this earth.

 Resting in the God who loves you can take you much farther -- to much better places -- than good health or good friends or any other earthly "good". Just something to think about. You are welcome to email me if you have any questions or want to talk.

Romans 15:13, May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

My Cup of Chicken Soup Overfloweth

Hello again! It's been a long time since I posted on this cancer-related blog. That is mainly/wonderfully/thankfully because I don't have cancer anymore. My life has moved on and so have my thoughts and doings.

That's a huge, big deal not to be taken lightly. I feel like a compatriot of Shadrach, Meshach, and Abednego: I was brought through a fiery furnace unharmed, unsinged, unscorched, without even the smell of fire on my clothing (Daniel 3:27). In modern American life, that means I am not emotionally singed or scorched. I do not go out among people, constantly reminding them of how bad things have happened in my life. I no longer mourn. I do not see myself as a victim deserving pity and special treatment.

However, this doesn't imply that I have forgotten the experience or have not been changed by it. Quite the opposite. While I do not spend every day dwelling on the experience (in fact, when people at church ask how I'm feeling, I go through a moment of surprise at their kind concern before remembering that they mean cancer-wise), I certainly was burnished by the fire.

That's what I mean to record. Rather than leave this blog untended, I will go back to complete it for the sake of others and as an act of joy for myself. I will pull from my private writings to give a more complete picture of the experience and I will extend the posts to include reflections on life enriched by trial and on struggles I still face. Oh, and plenty of reflections on the pleasure of regrown hair, something I never would have expected to bring me such satisfaction.

My main reason for revisiting this blog right now is that a new opportunity has been presented. I wrote of a cancer-related experience that has been accepted in a book in the "Chicken Soup for the Soul" series:

The book will be available on October 23, 2012 (my daughter's 8th birthday!).

While I did not specifically mention God in the book submission, He is the underpinning of my hope and my life, the current that carries me along and directs my course. And so, in my "by-line" in the book, I mentioned this blog and mean to use it to fill in more details of my story. So don't be surprised if new posts appear about past events -- it's just me completing the picture by moving material from my private writings into this blog.

Re-thinking Re-learning

There are certain life lessons that I need to relearn over and over again. It's frustrating. I feel stuck in a rut, spinning my wheels on the road to personal development and Christian growth. I'm embarrassed by my thickheadedness, my lack of progress. I imagine God as a long-suffering schoolteacher, sighing and saying, Didn't we already cover this material? We had a whole unit on this last year.

Case in point: I was thinking this morning about my son's difficulty understanding that my love for him transcends his behavior and accomplishments. He tries hard to please me and feels terrible after misbehaving. He craves my praise for perfect math scores, completed projects, good penmanship, beautiful drawings, well-made beds, fast running, clever invention ideas. He even feels the need to confess to me his wrong-doings, even if they don't relate to me, even after making proper amends, and even though we've talked many times about God's freely-given forgiveness upon our confession to Him.

Yes, this transparency can be reassuring. I often know exactly what he is thinking and how he behaved at school. But it's uncomfortable to have that sort of power in his life and to realize that my imperfect parenting can have potentially devastating effects on his psyche.

Why does he crave my approval? I realize it's partly my fault: his behavior -- good or bad -- and his accomplishments are what I comment on most often. They are tangible and visible and are often windows to his soul and mind, which are what I really love. I love my son for who he is, not what he does.

I sat on the couch this morning after doing my devotions and tried to assess whether I've been doing a good job of getting this point across to my son. Why does he still crave my approval? I've told him many times "I love you for who you are, not what you do", so what more can I do? Are my actions or words are sending a different and wrong message? What must I do to get him past this?

Then it struck me: that's exactly what God is trying to teach me. Again and again, I worry that I'm not accomplishing enough in my life, that I'm not bearing enough spiritual fruit or using my gifts properly, that I'm not making decent time on the road of life. But God doesn't love me for what meager ways I serve Him or for what legacy I might leave on this earth. He loves me for who I am regardless of what I accomplish or how I behave.  I need to learn the very lesson I'm trying to teach my son.

But why did this thought strike me as being so new, so important? I've already had an in-depth lesson -- a whole unit of lessons -- on this very topic. Let's go back a mere nine months ago and there it is: a lesson well-learned during chemotherapy about how God loves me even when I'm stuck on the couch in extreme, drug-induced exhaustion, unable to serve my family or work or do much more than stare ahead at some mindless television program. I even wrote a devotion for MOPS (Mothers of Preschoolers, International) on this very topic. How hypocritical to have written about an important lesson learned, only to find myself struggling with the same concept less than a year later. I must not have properly learned, since here I am again. The disappointed teacher in my mind crosses off the A+ on my paper and writes a big red F for failure.

I know this mental image is wrong. God is not a strict schoolteacher grading my performance. I want to develop a new, more godly attitude toward this purported failure, this spinning of my wheels. I can see how God can use my need to relearn as a way to continue His good work in me. Here are some thoughts to incorporate into a new attitude:

1. The need to re-learn is a lesson in humility. I can use each lesson to remind myself that I am a sinner doing what sinners do: sinning. I need God constantly, I am not ever going to outgrow my need for Him.
2. My re-visited lessons are not the same every time, not like a child's board game where an unlucky spin of the wheel takes you back to the first square. Each lesson builds on the foundation laid with the others. A lesson re-visited is a signpost pointing back to God's faithfulness along the road. I look back and see that God has been patiently paving my road with His patience and goodness, and He will continue to do so along the road ahead.
3. I need to think of re-visited lessons not as ruts but as themes. Just as a well-written book has themes, so can a well-lived life. A theme is meant to be revisited over time and in a variety of different ways. One of my life themes is that God loves me regardless of what I accomplish. He is developing this theme and building on this theme in rich and varied ways through my life experiences. My legacy can be a record of His patient faithfulness to a stumbling soul.

When my son gets home from school this afternoon, I will tell him again how much I love him, regardless of what he accomplished or how he behaved today. I will try to tell him this every day, to make it a theme in our relationship and to use it to point him toward our God who loves us perfectly: who is able to forgive the same sin over and over again and re-teach the same lesson over and over again. I will continue to monitor my imperfect parenting and to gently point my son toward God (not mom), but I will not look for proof of progress; I will not expect my son to "accomplish" in this lesson. Instead, I will strive to reflect God's patience by a willingness to revisit lessons for my son in unconditional love.

In His Palm

[Part of this post was later adapted into a chapter for a Chicken Soup of the Soul book. The book chapter uses a pseudonym for Reagan.]

It's been a rough fall. I started tamoxifen on August 1, with much dread. Nonetheless, the first weeks were a breeze; my worries seemed unfounded.

But soon I began experiencing hot flashes. Even though they were more frequent and more severe than the typical patient experiences, I soldiered on. I told my doctor that I could certainly handle that after going though chemotherapy. Many fellow survivors assured me that things improve after a period of adjustment.

However, as the weeks went by, I developed additional health problems that were likely related to tamoxifen's effects but were far more severely uncomfortable than hot flashes. Things seemed to get worse and worse rather than improving. After two months of seeing specialist after specialist and trying treatment after treatment, I was disheartened and upset. I returned to my oncologist, and he took me off tamoxifen. It was a relief to me, even if it increases my risk of recurrence. I am at peace with the decision and am slowly recovering my health.

During the month of October, in the midst of my discomfort, my prayer buddies began to pray that God would bless me with a wonderful November. They remembered that I was diagnosed with cancer last November and that I dreaded that anniversary, November 30.

November 1 came. I was still on tamoxifen and miserable.
Mid-November, my doctor took me off tamoxifen, but the side effects were unrelenting.
Late-November, I resigned myself to an unanswered prayer for a wonderful month. Oh, well, it's not big deal, I told myself. I blamed myself for not insisting weeks earlier on being taken off the medication. And it was my own decision to accept some work projects, which always add another layer of stress onto our busy household and didn't help improve the month.

But the second-to-last day of November, God made my month wonderful. I ran into a neighbor with whom I once served on the local church's council. "I need to tell you something," he said with an air of mystery. "Do you remember Reagan?" I knew he wasn't talking about the former President, but I didn't know anyone else by that name. Seeing my blank look, my friend continued, "He was that homeless man sleeping in the church garage five years ago."

Then I remembered. I hadn't known his name that Sunday afternoon five years ago when we, the church council, had learned that a homeless man was sleeping in our garage. He wasn't a nameless, faceless stranger; he was born and raised in our little town. His mother still lived here, and many older residents remembered him as a boy. But now he was back, but as a broken man,addicted to alcohol and homeless. These are overwhelmingly complex issues, and we -- the church council -- felt inadequate in choosing the best course of action regarding the man sleeping in our garage. We wanted to be compassionate but not enabling. We wanted to protect him but also address the fears of neighborhood parents. We had no idea what to do.

"Remember how you left him your sleeping bag?" Jim asked me. I did. I remember, after our council meeting that Sunday, going home and then returning to church with a sleeping bag from our camping gear. It was winter, and the weather forecast predicted a low of 19 degrees that night. I remember stepping fearfully into that cold, dark garage. I remember seeing no evidence that anyone had been sleeping on that oil-stained cement floor, under that roof so decrepit that it seemed only moss was holding it together. I remember leaving my sleeping bag with a note saying that it was from the congregation, so that -- if he did show up -- he would not feel guilty taking the sleeping bag. At the time, my act seemed shamefully inadequate, like a bandaid on an amputation.

I was shy about following up on my meager offering. But after several weeks, I peeked into the garage and saw that the sleeping bag was gone. There was no way of knowing if it had reached its desired recipient or had simply been removed by a zealous tidier.

I had completely forgotten about the sleeping bag until Jim mentioned it last week. "Reagan came to church this Sunday," Jim told me. "He gave his testimony." Reagan is now sober and has a job and a home. He came to thank the church and the AA group he attends there on weekdays for all their encouragement and support, for helping him turn his life around. "Reagan remembered the sleeping bag," Jim said. "He mentioned how much it meant to him and he thanked the congregation for it."

And that is God's gift. On November 30, my "cancer-versary," I was not dwelling on how harsh my life has been over the past year or how much I've lost. Rather, it was a day of rejoicing about how much has been gained. What a joy and privilege to minister to a child of God on His behalf! How wonderful that a tiny, forgotten act of kindness could have made a difference in someone's life. It's one, small, behind-the-scenes glimpse of how God is bringing about His kingdom on this earth.

When I consider what it means to be held in the palm of God's hand, I have always dwelt on His palm as a source of refuge and strength to people like me and Reagan. It is! But God's palm is even more than that: now I see that it's also where He holds His tools. The people in His palm are those God can use to accomplish all He sets out to do. I was God's tool in encouraging Reagan, and now he has been God's tool in encouraging me. And all without us ever even meeting! Knowing that God works this way in our fallen world, can you IMAGINE how amazing heaven will be?

The Pray and Play

I wrote the below reflection in response to a sermon at my church last week about how Christians are called to profound and meaningful fellowship with each other. The sermon was based on Hebrews 10:24-25,

And let us consider how we may spur one another on toward love and good deeds, not giving up meeting together, as some are in the habit of doing, but encouraging one another—and all the more as you see the Day approaching.

The Pray and Play

It was Carolyn’s idea.

No wait, she would never agree with that. Carolyn would be the first to say it was the Holy Spirit’s idea. But, as a willing vessel of the Holy Spirit, Carolyn invited Jane and me into her home for prayer starting one and a half years ago. We live close enough together that we could walk to each other’s houses. Jane would probably be the first to point that out. One of her gifts is seeing the big picture of God’s provision in our lives, how He meets our needs again and again, even needs we didn’t know we had, like the need for a close-knit, close-by circle of praying friends.

We aren’t an official church group. We are just three women who worship at the same church on Sundays and pray at each other’s homes on Fridays. At the beginning, we were three-fifths devoted to praying and two-fifths devoted to playing. That’s because two of the five people meeting each week were preschoolers. The background music of our prayer was the chatter and laughter of two little girls. So we named our gathering The Pray and Play. Sometimes the Players would creep into the room where the Prayers were praying. They called it spying, but we called it a joy that our daughters could spy us in prayer. We want to raise children who see prayer and friendship and prayerful friendship as integral to life. And how beautiful that two generations of female friendships could meet under one roof to enjoy closeness with each other and with God.

Praying together gives our friendship extraordinary intimacy and authenticity. We share our raw emotions and inner battles. What a blessing to come before God together; to be held accountable, encouraged, and upheld; to share our burdens and our joys. What a privilege to be a prayer guardian of each other’s children and husbands, siblings and parents, of our church and the people of our church whose names God puts on our hearts. What a blessing to see evidence of God’s care unfolding over the days and months and years in each other’s lives. By checking in each week, we see the delightful ways God answers our prayers, and we rejoice to have been witnesses of His mighty works and constant care.

Many times these prayer friends have been used by God in my life – their arms were God’s arms when I needed a hug and their words were God’s words, often straight off the pages of the Bible, when I needed guidance or comfort. This was most evident during my experience this past year with cancer. By God’s grace, the surgeon’s phone call with the biopsy results came on a Friday afternoon at 1pm, just as we were about to pray. God’s timing is perfect. His beautiful servants provided the arms to hug me and then prostrated themselves before Him to plead on my behalf.

Jane sat beside me during my chemotherapy infusion. If you know Jane, you know that the very air around her is infused with a sense of peace. What better person to have at my side as the needles delivered cancer-killing toxins to my veins? Carolyn organized meals and childcare after my surgeries and during chemotherapy. She is one of those lovely people who never draws attention to herself as she performs quiet acts of kindness. I am blessed to be the recipient of their friendship and kindness! I am reminded of how much more God does for us.

I always leave our weekly prayer time with feelings of peace and strength that last for hours. If only I could discipline my flighty heart to such focused prayer each day! If only I could share this blessing with my Christian brothers and sisters. And that is why I wrote this. This prayer group is one of many ways to fulfill God’s call to radical and profound Christian fellowship. I pray that my fellow Christians will have the courage to invite others into their lives in this manner and that those they invite will have the courage to say yes.

Going Public

I haven't posted for weeks. I've been laying low, still in shock that I had the courage to "go public" with my fight against breast cancer and the spiritual/emotional journey it has been.

Here are the two ways I told my story publicly:

1. I wrote an article for Intervarsity's website The Well, a resource for women in graduate studies or professional careers. It was an honor to write this article, available at here. It was also a huge leap of faith to write for a public forum about my medical and spiritual struggles. It was especially public in my little world, because I shared the link on Facebook with many acquaintances who were not aware that I had cancer and with whom I have not shared deeply about my faith.

The best part about writing that article was not what I expected: the thrill of completing an assignment or being published. Rather, it was the moving responses I received by email. The article proved to be:

• an opportunity to address faith questions with one friend
• a journey shared with other Christian women dealing with their own anxieties
• a "call to faith", as one acquaintance wrote
• a chance to reconnect with people from my past on a deeper level

It was hard to air my vulnerabilities, but I was blessed by the experience!

Any Christian knows that God uses our vulnerabilities to draw us closer to Him. It's a lesson straight out of Christian Living 101. No one gets through life without a thorn in the flesh of some sort, conditions beyond our control such as medical problems, disability, emotional challenges, abuse, or poverty. When Paul pleaded with God to remove his unnamed thorn, God answered "My grace is sufficient for you, for my power is made perfect in weakness." (2 Corinthians 12:9). Our thorns remind us that we humans rely completely on our loving Heavenly Father every breath of the day, every step of the way.

But here I learned a equally beautiful lesson that builds on the first. We'll call in Christian Living 201. When I make myself vulnerable, God can use me to bless others and build my relationships with them. Airing my struggles publicly connected me to others in ways I could not have foreseen. How humbling to learn that my experience spoke to theirs.

2. That was the heavy-weight stuff; now for the light-weight story of sharing my experience publicly. I took part in a clinical trial for a post surgical product and was asked to submit a testimonial about my experience with the product. The company's photographer took my picture and *presto* I'm a spokesmodel. 
:)
They might use my photo, first name, age, and words in advertising material. Here's one of the photos: