Read one of my most recent features on the IBC Network Foundation page.
It was just supposed to be a mammogram. A few weeks earlier I had gone to my doctor to inquire about an unusual hardness behind my left nipple. I thought, in part, that I was a tad irrational. My doctor validated my fears during my first appointment and sent me for a scan. I wasn’t crazy. But it was only supposed to be a mammogram.
I arrived at the hospital where the Breast Assessment Clinic is located and I was late because I had never been there before. The woman operating the machine was irritated. I was apologetic but it seemed to fall on deaf ears.
She smashed my breasts between the flat plexiglass that comprised the tortuous experience of having a mammogram, and within only a few seconds her attitude with me completely changed. I was no longer just having a mammogram, I was being sent for an ultrasound as well.
I tried not to cry. I tried to contain my emotion. I felt silly crying. I didn’t have a diagnosis yet. This was all still conjecture, a possibility, a potential reality—this wasn’t something that was confirmed yet. But an ultrasound turned into a biopsy. Within the span of two hours my life completely, and irrevocably changed. It was also my son’s eighteenth birthday. How was I supposed to remain calm and still celebrate my son’s milestone birthday with a looming dark cloud hanging over my head and my life?
It only took four days for the results to come back. Four days is nothing. Four days is insignificant in the context of a lifetime. But these four days felt like forever.
It was confirmed on a Monday. I had been diagnosed with Inflammatory Breast Cancer.
I remember sitting in the grey examination room of my doctor’s office while medical professionals conveyed the gravity of my diagnosis. My whole body shook with raw nerve. I was completely undone.
In the four days between biopsy and diagnosis I tried in vain to stay off the internet. I “Googled” survivor stories. Did you know there are none? There are statistics. A LOT of statistics. They are grim.
But I had found a blog by a woman from 2009. She was faith filled, positive and so determined that she was going to survive. In the early days she posted a lot about her treatment, her recovery and her hopes for the future. She was honest about her struggles and about her fears, which was hard to read but I appreciated her honesty. I loved her declaration that she was going to beat this, she was going to defy the odds and survive. It was empowering to read about her defiance of this disease. But then I read the last post. It was by a family friend. They informed the readers that she had lost her battle, and she was dead.
I threw my tablet half way across the room. I cried. No, I sobbed. I sobbed an angry, bitter, sorrowful cry that echoed through my home. This was just the beginning.
I have since survived 8 rounds of chemo therapy, a left radical mastectomy, 25 rounds of radiation, and I am now in recovery. I, like the woman I wrote about above, am optimistic, defiant and determined that I will beat this disease. When they removed the breast tissue from my body, they reported that I had no evidence of the cancer in my body. They have told me that is the best possible outcome they could have hoped for. That gives me hope.
But if you are reading this after I am gone, I don’t want you to despair. This disease is aggressive, but there are aggressive oncologists who are tirelessly researching new and improved methods for fighting this disease. This disease will knock you down and cause you to feel all kinds of emotions ranging from despair to anger, but when you encounter a new victory it will give you renewed strength and hope to continue to the next phase.
And there are others. There are others all over the world who are living with this diagnosis. Some have passed away. But others are bravely facing each day and surviving. Some have two years, five years, seven years, twenty-eight years—they are surviving. It is possible. Do not lose yourself to despair.
I won’t sugar coat this: IBC sucks. There are seemingly no good reports online, NOW. But hopefully, in the future, YOU will be that good report. Hopefully because woman like me have gone before you and endured the pain and the tragedy, oncologists will have more data to compile that will provide answers for women like you. And I hope beyond hope that because of other women who have died before me, that because of their sacrifice I too can survive, and this article is obsolete. I hope that I can continue to provide anniversary updates that announce that I am still alive. I hope beyond hope that 20 years later I can say, you have hope because I am still here.
But if I am not, I will tell you this: I fought and endured so that you could have answers and so that you WILL survive.
**If you have found your way here because you have just been diagnosed with Inflammatory Breast Cancer, then I encourage you to reach out to the IBC Network Foundation, it is important that you find others who have gone through what you are about to go through. There is an entire network of support. They will help guide you.
“Hate the sin, but love the sinner.”
Jesus never said this.
It’s from St. Augustine. His Letter 211 (c. 424) contains the phrase Cum dilectione hominum et odio vitiorum, which translates roughly to “With love for mankind and hatred of sins.” The phrase has become more famous as “love the sinner but hate the sin” or “hate the sin and not the sinner” (the latter form appearing in Mohandas Gandhi’s 1929 autobiography). 1
I read online just today about a high profile evangelical worship leader from the UK who recently admitted publicly that had been struggling her entire life with a conflicting idea about who she was. In short: she is attracted to women. She’s gay.
The response from Christians has been to boycott her music, preach to her, rebuke her, judge her, tell her how she is an abomination, how she is wrong, how she has twisted theology, or “comparing my gay orientation to someone “committing adultery, murder, rape, pedophilia or zoophilia“.”
This broke my heart. Let’s for one minute take the discussion of whether homosexuality is a sin or not off the table. She openly and courageously spoke about something that she has struggled with since grade school, and the public response from the body of Christ has been to silence her or shame her?
I hate the phrase mentioned above, because it is used as a means to cast dispersions against a people group that don’t think or act in a manner befitting an evangelical theology. The phrase has been so over-used that it is inherently unloving in it’s application. To begin with, by labelling a person a sinner, as if they were somehow in a class unto themselves because they are gay for example, is unloving.
So it begs the question, what does it really mean to love? The church is missing a huge opportunity to grow in love and they are missing it. Where the church has wrongly believed that the struggle of the LGBTQ person is because of their sin, it is more likely they have struggled against cultural norms that have kept them locked away in a prison of their own mind and body. Furthermore, focusing on the right and wrong aspect of what constitutes morality takes away from the crux of what Jesus was doing on earth.
I listened to this woman’s music. I had never heard of her prior to her public announcement so I sought out some of her previous recordings. Her worship is absolutely beautiful. I was in awe of the simplicity and the purity behind her voice and her heart. And I was reminded of the woman who came to anoint Jesus and wash his feet with her tears. The Pharisees all stood around and said, “This Man, if He were a prophet would know who and what manner of woman this is who is touching Him, for she is a sinner.” Luke 7:39 The passage doesn’t describe what her sin was, it has always just been assumed. I remember growing up and hearing pastors inform the masses that she was an adulterer, or a harlot, because those were likely the most egregious sins of the day.
But this was Jesus’ response, “Do you see this woman? I entered your house; you gave Me no water for My feet, but she has washed My feet with her tears and wiped them with the hair of her head…Therefore I say to you, her sins, which are many, are forgiven, for she loved much. But to whom little is forgiven, the same loves little. ” Luke 7:44-47 Jesus sends her on her way by saying to her, “Your faith has saved you. Go in peace.” v. 50.
The magnitude of that passage speaks volumes to me, but perhaps that is because I have lived a life where I have been forgiven of much. The verse in Romans that reminds us that we are all sinners is used often but in equal measure forgotten. So why, as evangelicals, does the church single-out the LGBTQ community? Why is it so important that they be wrong and the church be right? Does their sexual orientation diminish the truth of the cross? Does their sexuality diminish the truth of God and his great love for us? And if the church truly loved them, why does the church spend inordinate amounts of energy trying to silence them or shame them? (or condemn them?)
So the question I leave the church with is this: What does it truly mean to love? If our theology is more concerned with upholding a law or a rule, rather than the concern and compassion for people then our theology is wrong. When the emphasis is so much on proving that a people group is wrong, then how is that showing the love of Christ to the world?
The rest of the world is more comfortable when they hear stories of rosy optimism and conquering disease. I figured that out early. I could post glowing optimistic stories of each new victory I over came and I would receive endless praise. It was great, it fed my ego, but it wasn’t always honest.
When I was first diagnosed with Inflammatory Breast Cancer (IBC), the cancer machine whirred into action and I was surrounded by well-meaning and compassionate people who offered to do almost anything. For someone like me, who is very self sufficient and independent, it was difficult for me to accept the help. But I did accept the help, I needed the help, and I am forever grateful for it.
Now that I am through the hard parts, most of the people have disappeared. (I say most because I do still have an incredible support system and I do not want to minimize their contribution to my recovery) They are more comfortable knowing that I am healing and recovering. They don’t want to hear about the days that I can barely get out of bed because I am so tired from over-exerting myself. They don’t want to hear about the difficulty I have reaching things on high shelves because my arm no longer has the range of motion it once had because of the missing lymph nodes. They don’t want to hear about the struggle for breath when I am walking a block or two. They don’t want to hear about the depression, or the anger, or the loneliness that inevitably creates a barrier between me and the rest of the world. They don’t want to hear about the insomnia or the drug addiction that develops because of the long drug use. And they really don’t want to hear about the chance of reoccurrence or worse.
When the bell has been rung, it signals the end of chemotherapy or radiation. It doesn’t signal the end. That distinction needs to be made because in the minds of loved ones, it can sometimes signal relief for them. When a cancer diagnosis is given it feels like a death sentence, and so the sound of the bell can sometimes feel like reprieve. It’s not. For the cancer patient, the sound of the bell is merely a beginning of a new battle. It signals the beginning of reclaiming everything that was lost when cancer ripped the ground out from beneath them. It signals the beginning of fear—the fear when the other shoe will drop, when or where the next lesion or tumour would appear, the fear of having to go through all of this again, the fear of everyone disappearing just when the next phase of the battle is beginning. These fears are realistic and highly probable.
Through my own experience there are 9 things I have discovered that are the most effective way of continually showing love and support for those recovering from cancer or any other major illness:
1) Endure the loneliness and depression.
Cancer survivor stories are not always depicted honestly. The positive ones that depict overcoming great odds skip over the hard parts of struggle, frustration, isolation and depression, and focus on the triumphant end result. The most loving thing a person can do is endure the rough stuff with the ones going through it. It is a long road back.
2) Talk about what could happen in the event of death
To the cancer patient, this is a possible reality. Even after a successful treatment, there is a possibility of reoccurrence or metastasis. If the cancer patient wants or needs to talk about their final days—their wants and desires in the event of a poor prognosis, their expectations and blessings for those left behind after they do die, or their funeral—let them.
3) Don’t just say, “I’m praying for you.”
This is no way is meant to minimize the power of faith, or to imply that prayer is not warranted. But often times, this statement can be used as a means of offering comfort. But to even the most devout, this statement can mean very little in terms of comfort or substance. If you feel compelled to pray, then just pray. But as a means of offering comfort, more practical ways would be reaching out and asking how you can help.
4) Offer physical support or time. They still need to know you care.
Cancer, as with many other major illness, is incredibly isolating. The most effective means of offering support can be to spend time with the person. Even just sitting in the same room saying nothing is more powerful than all the flowery words in the world. Watching a movie together, or rubbing their feet, or bringing tea and mindless conversation is more powerful and meaningful to someone suffering the after affects.
And keep inviting them to things. There will be times when they say “no”, and it might feel like they say “no” more times than they say “yes”. But keep inviting them. Just knowing that they are wanted or needed can be unbelievably comforting.
5) Don’t focus on the disease, but don’t gloss over it either.
This one might seem like a paradox but it’s not. Cancer robs so much from the lives of those it infects, it shouldn’t rob a person of their identity either. Where someone used to be a prolific writer, or musician, or cook, or [insert interest here]—they are still that person. But to try to forget that a person’s life was irrevocably changed by such a powerful disease is to minimize their struggle.
6) Don’t expect there to be a time limit to their grief.
Telling a cancer patient to just stay positive, or to have faith, or to focus on being grateful is only meant to make the rest of the world comfortable. If the patient is angry, let them feel that anger. The stages of grief don’t have a formulaic time frame and it is unfair to expect that from anyone. Cancer robs so much, not just time. Though the obvious struggle might be over, the loss can sometimes have a rippling effect. A limb or a body part might have been removed, chemotherapy might have caused infertility or put a woman into early menopause, there could be a loss of cognitive functioning as a result of “chemo brain”, there could be significant weight loss or gain, there could be a loss of muscle function, there could be a loss of sexual intimacy or function, and there could be a loss of identity. These things continue to cause no end of anger, depression or sadness. It could cause the breakdown of a marriage due to stress and conflict. It could mean the loss of dreams and expectations for the future. Cancer patients find that sometimes they lose friends because of cancer. The most loving thing someone can do is allow the cancer patient to feel those things.
7) Continue to offer help
Cancer patients can often take up to a year or longer to recover after their final treatment. Fatigue is a huge symptom that is hard to overcome. Fatigue is more than just feeling tired. It is an absolute feeling of moving through quick sand. It is mental, physical, and emotional exhaustion. Cutting the lawn, doing a load of laundry, shovelling a driveway, going grocery shopping, or cooking dinner can sometimes take every ounce of energy from a recovering cancer patient. There are good days, and that feels like a huge victory to them, but they are often short-lived. More times than not, a recovering cancer patient will skip over these basic chores that normal people would take for granted in favour of sleeping on the sofa watching re-runs of Friends.
8) Don’t minimize or ignore their fears.
No one wants to admit that a loved one could face this disease again, but those fears are realistic. It would be more productive to re-direct those fears. Help them face those fears. Let them know that you will be with them every step of the way, and help them develop a contingency plan in the event that the cancer does return. Knowing that they have someone to face this disease with should it return is instrumental in moving beyond it and living for today.
9) Don’t disappear.
This is often the most hurtful aspect of dealing with cancer. Life does continue to move on even though the cancer patient feels like they are living in limbo. Making a conscious effort to remain present can be the single most important thing a loved one does. The cancer patient does eventually feel like they have been a drain on the ones around them. They are not oblivious to the extra effort that has been put forth by those around them to help support them during the chemotherapy, radiation, and surgery. There will come a point where they will stop asking out of guilt or a feeling of becoming a burden. But they absolutely do still need their friends and family around them.
Someone fighting a life threatening illness will almost never make their loved ones feel guilty for not being there, not intentionally anyway. They already feel like they have taken too much, or that they have become a burden. This is the harsh truth of their recovery after the bell has been rung.
It should NEVER be about preserving an institution: It SHOULD always be about Jesus!
Generation X–MY GENERATION–was written off long ago as useless, directionless, and never amounting to any real purpose. Our love-affair with the church was likely the first to become stagnant. But then in come the Millenials, and even more ruthless in the judgement against them than there was for the Gen-X’ers, they are leaving the church in droves. I personally understand why.
This article articulates with beautiful clarity why they would be leaving, and the bare bones truth is, I get it and I support it.
I am fortunate enough to attend a church that on most levels “gets this”. I love my church, but I see the pit-falls. And it isn’t for lack of trying. There aren’t enough people who have the same conviction. I wish more churches at least tried.
I have three sons–and their interest in churchey-programs is nil. It is far more important to me, that the legacy I leave them is one of love, compassion, and serving those who are less fortunate than I am.
*Blog and photo Published by Recklessly Alive (http://www.recklesslyalive.com)
Stache on Main proprietor is taking a well-deserved break down in sunny Jamaica. While it is MOSTLY about the sun, sand, ocean and drinks, Kyla took a detour today and went on a little work project…check out her photos. (see below) Here is the description of her day, as told from her Facebook page: “I […]