LAM

A Thank-you to Cancer and Other Ugly Nasty Diseases

September 16, 2014 by Cindy DeBoer 2 Comments

My dad was 71 when he was diagnosed with advanced-stage colon cancer. Because he can be a rather grumpy old man who’s anger and temper are legendary in these parts (he was once evicted from his own high-school basketball game after getting so upset about a referee call that he slammed the ball into the floor with such force it bounced up and hit the ceiling) my three sister’s and I were all a bit wary about how this journey would play out. We knew he’d be a miserable patient. We decided to take turns bringing him in for chemo and radiation in an attempt to spread out his hostilities.

This was my first real “go around” with someone battling cancer. Sure, I had come alongside several others with cancer and helped with meals, rides, visits, etc. But that’s different. That’s just peaking in on their lives when it’s convenient for me and feigning understanding. Because, truthfully, I didn’t have a clue what they were going through. With dad, things got real. It was a real, shared walk through the valley of the shadow of cancer.

Chemo and radiation appointments involve lots of waiting – so we spent countless hours in the terrarium-like café that anchors the cancer center in Grand Rapids. Over orange-cranberry muffins and dark-black-coffee-no-sugar, Dad and I would talk about growing-up memories, golf-cart repair issues, sports, and all the “bull-shit lawmakers who have their heads up their asses.”

One day, in that lovely cafe with the smell of cancer thick in the air, I saw something new – a fresh perspective. I saw a well-dressed business man in a tailored black suit – with expertly coiffed hair and his briefcase tucked upright by his feet – sitting opposite his bald mother, hand-in-hand. She was attached to her chemo pump and she seemed to be soaking in every word of her attentive son. I saw a young mom, with her three little children dodging in and out of her legs and the legs of the table, sharing hysterical laughter with her dying sister – a woman of 42 who was losing her battle to breast cancer. I saw two middle aged women – one the sick and suffering and the other the best friend – leaning in as they talked, holding hands, sharing lives and sharing tears.

I was witnessing the holy gift of presence.

Wherever you are (at least in America) and whomever you meet, if you ask them, “How are you?” almost invariably the first word out of their mouths will be “busy.” Or they may respond with busy’s sister, “tired.” It’s pandemic – those are our culture’s predominant adjectives. As I looked around at the many people in the café that day, I thought: These people are busy, too. I’m sure they are just as busy as everyone else “out there”. But then I realized, it is because of this thing called CANCER that they have all chosen to get off the crazy-cycle of life and spend today – this day – in the terrarium café of the cancer center, and be fully present for the person in their life who is battling this wicked disease.

They get it, I thought. They get it that nothing else matters as much as the people in our lives.

For whatever else these busy people had going on in their lives – on THIS day they decided that people matter most. Relationships matter most. And they chose to say ‘’TODAY, I will honor my loved one with the gift of PRESENCE.”

When someone gives you something that you really needed, that you crave and long for, and fills a gaping hole in your life, I would say that is a gift. Even if you didn’t know you needed it – it is still a gift. Might cancer be a gift? Is that what God was thinking??? Please understand – I DO NOT think cancer is beautiful. I think it is ugly and is a result of the Fall and I think God weeps when someone gets cancer. But I do know this – what I saw in that café every time we went in for a chemo or radiation treatment was a beautiful side of humanity that we rarely get a glimpse of anymore: people slowing their lives down enough to really REACH INTO the lives of another and bring hope, comfort, presence and peace. It’s like they bring some heaven to earth.

Cancer gives us the gift of presence.

Until my dad got cancer, I really didn’t want to hang around him much. He can sometimes be down-right mean – and he yells at me when I’m driving. He sometimes makes me feel six-years-old and I’ve just spilled the red Kool-aid on the shag carpet. And he thinks anyone who isn’t a conservative Republican in the Reformed Church of America is an idiot (which causes trouble for me…). But cancer changed all of that – I suddenly didn’t care about his mean tendencies, yelling in the car, and political views. I just wanted to spend time with my dad because I realized our days on this planet are numbered and I wasn’t going to have him around forever. This life is not our own, and we can no more control the beginning and the ending of it than we can control the rising and setting of the sun. I started missing dad even before he was gone – and suddenly, more than anything, I wanted to spend long hours over orange-cranberry muffins in the cancer center’s café listening to his rants about Obama and his asshole neighbors at the trailer park.

I have learned over the years that my dad really does love me, but has a hard time expressing it. I love my dad, too. And I haven’t told him that enough. Cancer gave me a chance to do it.

Sometimes it takes something as ugly as cancer to bring that out in people.

And now I am beginning the journey of my own walk through the valley of the shadow. It may be years before I feel any of the effects of Lymphangeioleiomyomatosis (LAM), but I’ve seen the CT scan of my lungs and it is scary. I’ve lost countless nights of sleep tossing and turning as I picture those cysts on my lungs hijacking the space meant for air exchange. And because there is nothing that I, nor the medical professionals, can
do at this point to treat my LAM, I decided the one thing I could do was jump up and down and scream to the world that LAM exists and that it’s evil and ugly and should be eradicated! I joined forces with my sisters and a few friends and organized a local 5K Walk/Run to raise LAM awareness and hopefully raise some money to help find a cure. We decided to set rational expectations, and prayed for maybe 40 or 50 participants and set our financial goal at $2,000.

In mid-August, as the Lord blessed us with the best West-Michigan weather ever, around 275 people participated in our “little” 5K and we raised over $13,000 to help fund the search for a cure! It was nothing short of miraculous and it took my breath away (no pun intended). I looked around at that sea of people that glorious Saturday morning and realized, again, I was witnessing a beautiful side of humanity. The side where all these incredibly busy people slowed their lives down enough – their one wild and precious life – to take part in an event that extended to me and every other woman with LAM the gift of hope, comfort, presence and peace. It was such an amazing celebration of life. Even though LAM is ugly, the celebration that day was beautiful. Truly beautiful.

I hate it that my lungs are slowly giving out on me – but I am beyond grateful and remain totally in awe that I got that little glimpse of heaven come to earth that day through the outpouring of love from all those people running a 5K. Maybe failing lungs is just one of the many tools God uses to get humanity to counter the overbearing “stay-busy-and-tired” message of our culture and instead to slow down and give the gift of presence!

I’m telling you what, even when things seem bad – even ugly-disease bad – God is still good.

image courtesy of hin255 @FreeDigitalPhotos.net

A Roaring LAM(b)

June 20, 2014 by Cindy DeBoer 1 Comment

Last year, on the day before Thanksgiving, I found out I have a terrible, rare, progressive and often fatal lung disease. Nobody – not one of the experts, not one of the scientists, not one of the doctors – can tell me how many years I may have left to live. But I get that – who but God really knows anyway? However, the one thing they ALL seem to agree on: I have a lot fewer years left than I did just two days before Thanksgiving – when I didn’t know I had Lymphangeileomyomatosis.

It’s called LAM for short, because, let’s be real – no one is going to remember Lymphangeileomyomatosis. LAM. Seriously, God? That’s my new moniker? A LAM(b)? Of all the animals on the planet that might be fun to be named after – I get to be called a lam(b)? A lamb is a pokey, wobbly, helpless baby sheep. As if being called a BABY of any animal isn’t enough, I get to be a baby animal from the sheep family – who are most widely known for their dim wit! Ask anyone what they think of sheep and they’ll reply “stupid”. Because of their confused and moronic tendencies, sheep have even been known to follow each other right off the edge of a cliff.

At the most frail and freakish time of my life, I get to be a lam(b). Not even a full-grown sheep who has learned a bit about sheepdom, but a shallow, immature, dependent little baby sheep. How poetic. And then the real irony is this: I actually feellike a little baby sheep, too. I feel dim-witted, confused, sheared, exposed – and most of the time I want to run – to flee, sometimes right off the edge of a cliff.

But then I read up a bit on sheep and sheep-things – and I found all kinds of reasons that make me proud to be one of them. Here they are:

Sheep are known to follow their leader – the CLEAR leader. Even blindly, without any understanding of where they are being led and why, sheep will follow their leader. Likewise, the most important goal in my life is to follow my leader, Jesus, wherever and into whatever He leads me. I want to have as much faith as my sheep-friends, so that I will follow Jesus blindly, even when I don’t understand where He is leading me.
Sheep have such incredibly strong peripheral vision, they can actually see behind themselves without turning their heads. If I am living my life as fully engaged as possible, I need to be able to learn from all that is behind me. I don’t want to live in the past, which would only weigh me down, but I just need to be able to seethe past to know how to navigate the future and prevent recurring mistakes. The ability to see behind ourselves – for both me and my sheep friends – could actually spare us all kinds of pain.
Sheep become stressed when isolated. When I first got my diagnosis, I began wallowing in self-pity and since I knew not a single soul with the same disease, I could not commiserate my misery with anyone. The more I isolated, the more stress and anxiety I experienced. Apparently, sheep have learned that which I still struggle with – we were not meant to do this life alone. We need community. We were created for community. Community is good. And once I reached out to family and friends – my people/my flock – I felt the stress just wash away.
Domestic sheep have a life expectancy of 10 – 12 years, but some live as long as 20. When I first got my LAM diagnosis, I raced to the internet and Googled it. Of course I did – it’s always our first move in the 21^st century. I was devastated to discover that most literature cited LAM as having a 10 year prognosis. As I’ve investigated further, many people are currently suggesting the internet data is outdated, and that with earlier detection and possible lung transplant, LAM patients are now very capable of living 20 years or more – just like my sheep buddies. I don’t know how long I’ve already suffered from LAM, it could be I’ve had it for many years already. But because I’m definitely a domestic sheep and not a wild one, I am praying and choosing to believe I could live for at least 20 more years.
Sheep have been used, both in ancient times and in modern religious rituals, as sacrificial animals. Is there any possible way that God Almighty allowed me to get this disease in order to call attention to it, raise awareness, potentially leading someone to find a cure, so that ultimately other young women might live? Or bigger yet, is there any possible way that God Almighty allowed me to get this disease, asking me to glorify Him even in the midst of suffering, so that others might be drawn to HIM? Oh my, even the thought of that takes my breath away.

So today, today I am embracing my inner sheep. I am a LAM(b) who is choosing to accept that I am quite dim, that I definitely NEED my leader and I definitely NEED my community, and that I have been called into this suffering and that’s not a terrible place to be. Because of those choices, I refuse to be a quiet little LAM(b). I refuse to surrender to hopelessness and despair. I refuse to accept “no cure”. I am choosing to stand up and shout. I choose to be a ROARING LAM(b)!!!

As you get older you care less and less what other people think about you – so you say whatever you want. When you’re dying it gets even worse. My kids are constantly cringing around me because they never know what I’m going to blurt out next. So here I go: I am unashamedly going to shout from the rooftops that LAM is snatching young women’s lives and it DOES NOT have to be this way! LAM is under-researched, under-funded and under-known. I believe there is a cure and we only need to find it! And so this roaring lam(b) – with a ton of help from my flock – is doing one BIG thing this summer to create awareness:

The 1^stAnnual LAM Awareness 5k
Walk/Run in Hudsonville

August 9^that the Hudsonville Baldwin Street Middle School Baseball/Softball complex

7:30 a.m. Registration begins

9:15 a.m. Walk/Run begins

$32.50 registration fee (Because the average age of onset of LAM in women is 32.5 years old); 5K t-shirt, snacks, prizes, and FUN included.

Register on-line at: http://thelamfoundation.kintera.org/faf/home/default.asp?ievent=1113636

Won’t you please come join me, my family, friends, and community, and help to create awareness for a little-known, but devastating disease? All proceeds will go to the LAM Foundation – http://www.thelamfoundation.org/– a 501c3 and the sole organization working to raise funds to further awareness and find a cure for LAM.

For questions, please call Kris Zylstra at: 616-648-6323 or e-mail at: zbowfamily@yahoo.com

If I only had 10 more years to live:

December 24, 2013 by Cindy DeBoer 52 Comments

The phone finally rang – two days, three hours and fifty-seven minutes later than it should have. I was a shredded pile of emotions from the waiting. She took an infinitely long breath, cleared her throat, and dealt the blow: It is as we feared – lymphangioleiomyomatosis. I know what you’re thinking: that’s not a word, it sounds like a kindergartener made it up. It’s most definitely a word and it’s definitely no joke. While initially I was relieved that it wasn’t the “C” word – the one disease we’ve all learned to respect – now I’ve come to wish it were. I remember learning in nursing school that cancer should really be viewed as a curable disease. Many times people with cancer receive successful treatment and are cured and we need to stop thinking of that diagnosis as the kiss of death.

Not so with lymphangioleiomyomatosis (or LAM, its kinder acronym). It is not curable. In fact, “they” – those great minds of the medical elite – make no concessions about that. “They” don’t even know how you get it or how to treat it. Paul and I have been to multiple physicians and even drove across the state to the University of Michigan and talked to the most special specialist who specializes in LAM. I have also now read from nearly hundreds of websites – six weeks since I first heard there was an evil in the world called LAM. Six weeks since “they” first suspected I have it.

I am 47 years old. I basically feel healthy and strong, but for years I have wondered if I was more short of breath than I should have been. Although I can walk for miles, I couldn’t really carry on a conversation while walking, and try as I might, I was simply unable to run for lack of air. I blamed it on being 20 lbs overweight and vowed that someday, when I finally got in shape, I’d run a marathon. I was also more tired than I wanted to be – but I blamed that on four kids, multiple moves overseas, middle age, and an affliction that makes me unable to say “no”. And, apparently, I cough. It doesn’t bother me any, but I’m finding out my loved ones have noticed it (a lot) and find it rather annoying. But I would have sworn to you I’m not sick – just, well, a little bit not quite right. But now “they” have assured me those are all symptoms of a disease which initially lets you appear healthier than you are. I guess LAM has started to take over my lungs and moved toward my kidneys. And slowly, I will find it harder and harder to breathe until I simply cannot. “They” say this takes, on average, ten years.

Where does one even begin to process that? Before we even started telling family and friends – or our own kids for that matter – I was thrust, unwillingly but entirely necessarily, into a mind-numbing exercise of trying to make sense of all that is life, and all that is death, and how to fully live in every gifted breath. I hope, and believe, that as my plus or minus ten years progress, I will discover more about the meaning of life and that I can exit this reality with more peace than I have today. Because today I’m still a bit of a mess.

One day, or maybe it was night (they’re all a blur lately), while being swallowed both in self-pity and a sea of snotty Kleenex, I decided someone with a terminal illness should probably make a bucket list. Ten years is not near enough time to do all the things you thought you had 40 years in which to do them. My list included many things one would expect to see on a typical bucket list: see “Wicked” on Broadway, visit Machu Pichu, walk the great Wall of China, run a marathon, see Coldplay in concert, hike the Himalaya’s, learn to speak Spanish, sky dive, etc.

But before I even got to #9, I had a revelation. I realized that if I really only had 10 years left, I better first figure out the pointto this life and then waste no time trying to get there. I don’t really have time for pointless activities – unless of course they were done with people I loved – but then, that would be the point. The more I thought that through, the more I was convinced I couldn’t (wouldn’t) make a bucket list full of typical things one does before one dies. Because, I reasoned, those typical entries were all deposits made into “ME”. Places I wanted to go, wonders I wanted to see, things I wanted to do – all of which, are all for ME. With only 10 years left, why would I only make deposits into ME? When I die, those deposits all die with me. The only legacy one can possibly leave behind that makes any sense at all is a deposit into OTHERS. What I really must do for the last 10 years is pour whatever energy I have left in me into other people. In my less selfish moments, when I’m not grieving over the fact that I will be robbed of maybe 20 or 30 years on this planet, I have concluded I must spend my years sharing the love that I believe can only be found in Christ Jesus my Savior. I want to live like Him – just extravagantly loving others and pouring myself out for them.

So, this is my better bucket list:

I want to spend as much time with my four children as they’ll allow. I’m aiming for a melange of Carol Brady, Claire Huxtable, Maria von Trap, Mother Mary, and Olivia Pope – praying that even a sliver of good in me can be majorly multiplied in them growing them into good, kind, compassionate, hard-working, self-less givers who are musical, wickedly smart, and forceful world changers.

I want to be spending unhurried time over long lunches with friends who feel like they’re being trampled from the hurried masses, beaten down by the world’s injustices, or crushed by the pressures of a culture run amok – and simply listen. We’ve all got crap we’re dealing with – but we don’t often find good listeners with whom we can safely spew our crap. Dear Lord, make me a big crap loader.

I want to walk Buddy, my Holy Spirit she-dog, through the trailer park and let all the children (some who, I fear, are bearing physical and emotional wounds from their tired, over-worked, and underpaid daddies) pet her and play with her and forget their troubles for just a few moments.

I want to spend unsolicited coffee-time with my sweet and self-less mother-in-law who is slipping away slowly and barely remembers my name these days.

I’m going to be all about letting my 12 year-old daughter climb up on my lap even though she is entirely too old to be doing that sort of thing, but entirely able because she is from Guatemala – a country where they just make smaller people.

I want to drink wine with our friends until we’re giddy and foolish and we let some buried things bubble-forth and then we laugh and cry together as we realize this was the very therapy we needed.

I want to take longer showers (My husband must be thinking: is that possible?) – but like most people, that’s where I get my best revelations. Often, I feel God reveals to me random people from my past which feels like a prompting to reconnect: Kathy Henderson from nursing school, Diane Marker from Davenport, Stephanie Saumon from Aix-en-Provence, Julie Jones and Stacey Johnson from Casablanca and countless others – where are you now, my sweet friends? And do you randomly think of me as often as I randomly think of you?

I want to keep visiting our poorest of poor friends in Morocco and just sit with them, accepting their extravagant generosity, while we wrestle with the pain of how much we have and how much they have not. And loving them deeply, without necessarily fixing their problems.

I’m going to keep a large bag of Snickers in my car at all times so I always have something to give a pan-handler. Since I am running out of time, it doesn’t look as if I’ll be able to solve the problem of poverty and homelessness in America – or for the rest of the world for that matter. And that beats the hell out of me because I so wish I could. But possibly, for this moment, on this day, for this one person, I can at least hope to spread a flicker of sunshine. Besides, who doesn’t love Snickers?

I’m going to work hard at forgiving those who wounded me unintentionally. Harder yet – forgiving those who hurt me intentionally. And why stop there? I want to bless them, too.

I’d like numerous fireside chats with our neighbors making time for sharing stories. But also watering their flowers, feeding their dogs, eating their cherry tomatoes, giving their kids popsicles – so they are much more than “the people with the white car”, but they are fellow sojourners whom we actually share life with on our little cul-de-sac in Hudsonville.

I think I’ll watch more comedians. Brian Regan, Jim Gaffigan, Stephen Colbert (don’t judge) and Tim Hawkins – these will be some of my new friends. I just want to laugh, in a room full of people I love, because I think laughter is music to God’s ears. And bonus, I’ve heard a good hard belly-laugh can burn upwards of 100 calories.

I’d like to keep working at my job at a psychiatric hospital – because I believe I have been called to serve the marginalized in society. I feel so honored and privileged to care for these misunderstood people – I’d even be willing to work there for free. And I now see how the soul begins to die when we stop serving others – which is a much worse death than the physical one.

Because of that last one, I think I’ll return to the homeless shelter where I interned last year and start volunteering. I’ve never felt more alive than when I walked through those doors and breathed in deep the aroma of desperate need colliding with God’s love in action.

I want to spend countless afternoons watching the sparkles accumulate on the lake as the sun descends in the sky, and then, because we’re too ensconced to get up and cook a proper meal, we’ll just throw all the food from both of our refrigerators onto the picnic table and feed all the kids left-over chicken wings, string cheese, a head of lettuce and a can of baked beans. I want to laugh and eat s’mores and drink wine around the campfire until our sides hurt too much from laughing and the mosquitos chase us away.

I want to have ice cream for dinner – repeatedly throughout my remaining summers – buying about 20 gallons too many so that we can take all the extra gallons to the trailer-park to spread smiles.

I want to spend time at my local nursing home and find out which residents never get any visitors. And I want to sit with those lovelies and let them talk endlessly about their childhoods, their children and grandchildren, their careers, their legacies – until they run out of stories or break into song with “How Great Thou Art”. I used to work there – I know how it goes.

I want to pull out my memorabilia from high school and college and spend a whole day, or perhaps a whole week-end, with my high-school sweetheart, who both miraculously and graciously married me, and together read through all of our old hand-written love-letters to each other. And I want to revel in the beauty of 27 shared years. Twenty-seven. That’s a pretty big number when you’re talking years.

I want to read a ridiculous amount of books. I know that seems contrary to what I said earlier about investing in others and not myself – but I also believe this truth: When we live out the life that God destined us to live and we become who He created us to be, He is glorified. He made me a reader and a writer. And when I read, I feel His pleasure.

I want to plant trees. Is it just me or have others noticed that the trees are dying? When we returned from living in Morocco, I was hyper-aware of dead trees everywhere – way more than when we had left 4 years prior. I think it’s continuing to get worse. I think I’ll plant at least one tree for every year God gifts me here. At first, I felt like this one wasn’t an investment into people, but now I think it is.

I want to hand-write cards expressing: “Thank-you”, “Way-to-go!”, “Congratulations!”, “Thinking of you”, “Praying for you”, “Sorry for your loss”, “Wish you were here”, ‘til my carpal-tunnel screams “No more!”

If my lungs will allow, I want to take several trips to Guatemala or Honduras – two countries that are home to many people we know and love. And on these trips I want to take bunches of people who have never left the USA before, and introduce them to the “real world” and hope and pray that they get it, absorb it, and live differently because of it. That’s what changed us, anyway, and I’d love to keep paying that forward. Even though it wrecks you for good.

I hope I’ll never watch another reality TV show – perhaps any TV show for that matter. I don’t find the point in it at all. Unless, of course, it is “24” with my husband and our two sons and we’re all death-gripping each other’s hands on the couch, or “Downton Abbey” with my two daughters curled up under the same blanket with me.

I don’t know, but I think with only 10 years left, I’m going to give up dusting and vacuuming. Those two things seem equally pointless and just time-suckers – time better spent with people. I need to be about making a point. I bet they don’t dust and vacuum in the Congo. I’m contemplating throwing out cleaning toilets as well – but more undecided on that one. I still have nightmares about the toilets at Paul’s college residence after just ONE year with no cleaning… I swear I got bit in the butt once by some kind of toilet vermin.

And I’m going to write that stinkin’ book. It doesn’t matter if it is ever published or even gets read for that matter, it just matters that our story gets told. We all have a story and they are all too good to not be told. The five reasons this bucket list entry is for others and not for me are named: Paul, Andy, Josiah, Grace and Yulisa.

In fact, I’m going to write everything down on this journey. And I’m going to share it openly not caring what some negative people may say anymore. I’m done with letting words hurt me, and I just don’t have time for that anymore. The only way I can be hurt now is if someone would steal the set of lungs that I might need for a transplant.

And then, hopefully, if I still have energy left after all that, I want to devote serious time, money, and creativity in bringing awareness to LAM. Because it’s so rare, it doesn’t receive the research monies a terminal illness deserves. It still has no cure, and it is silently killing many women in the prime of their lives with average age of diagnosis around 35. I cannot possibly understand the mercies of our God – but mercifully, He has allowed me to live this long, well into my 40’s; and hopefully, He grants me another 10 years. But many other women with LAM do not live long enough to even see their first grey hair or their children graduate from high school. I want to tell everyone I know about LAM, and trust that somehow, somewhere, someone out there exists who will discover the cure.

LAM

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