Posts tagged ‘cancer’

Write.

I’ve had at least twenty ideas for new blog posts over the past several months. But I’ve not been able to write them. Sometimes it’s difficult to form words around what my heart really wants to say. To go to the levels it takes to process thoughts enough to put them into sentences – much less sentences people can read.

But, I love being a writer. And I’m learning as time goes on, my place in this world is to be a writer. I don’t take the job lightly.

As a writer, I talk about the world as I see it. It helps me contribute and give back. It makes me process. And in that processing, it validates others.

Writing helps me cope with the loss of my friends. There’s been a lot lately. It helps me say farewell and leave a lasting tribute to them. It helps me remember the great things about them. When I can write about losing a friend, somehow the writing seals in the memories. Recently I said goodbye to my friend Belle. She was a writer, too.

Writing also helps me celebrate. I write a lot for work. I penned the celebration of the president recognizing Colorectal Cancer Awareness Month – something we didn’t expect this year. I wrote about my 14th “Survivor-versary.” I like to write about good things too. Life’s too short to stay focused on the negative.

So today, I write. Why today, I’m not really sure. Maybe it’s because my strength is gone after a long week of traveling and I lack the energy to do much more then string words together for a blog. Maybe it’s because a well of emotions sits heavy on my heart as close friends continue to battle disease and hug their loved ones for what they fear will be one last time. And maybe it’s because over the past several weeks as I’ve sought after my purpose and role God would have me play in this big journey – this big problem – called cancer, I keep hearing one constant word:  write.

March 22, 2015 at 3:49 pm 1 comment

It’s OK to go Quiet

I recently renewed the domain name to this blog and realized I’ve not written one post all year. ALL YEAR!

team-in-dc

With my team in D.C. for our 8th annual Call-on Congress

Part of that is unintentional. Working at Fight Colorectal Cancer means that it’s “go time” right when January starts. For two months we work nonstop in preparations for March – Colorectal Cancer Awareness Month. And then once March hits – we’re in a flurry of activity. I’ve ridden in more airplanes, subways and taxis the past three weeks than I have in my entire life.

And every second’s been worth it.

So, I’m just now slowing down after a crazy few months and personally blogging again. And while my activities have taken up the majority of my time, my schedule isn’t the only excuse for not blogging lately. There’s another reason.

Not all of this journey is public. And honestly, I didn’t feel like it.

If I’ve given awareness to anything over the years, I hope it’s a few things:  colorectal cancer in general; a hope that faith can carry you through anything; and, the realization that this disease has many layers and can hit you in different ways.

At the One Million Strong Kickoff in NYC's Grand Central Terminal

At the One Million Strong Kickoff in NYC’s Grand Central Terminal

The KC Star ran my story in January through a full-page spread in the FYI section and an AP-syndicated story that followed. It was certainly gracious of them, and unexpected by me. I had no idea my little birthday bash would soon become a headline story across the U.S. (or I guess the world, since an Australia newspaper picked it up.) For the past several months I’ve seen my face behind The Colossal Colon in many news feeds and articles on a nearly daily basis.

Between my job at Fight CRC and the publicity of my birthday party, I’ve had more doors open to share my story than ever before. Hospital newsletters, Sirius Radio, colon cancer walks, the Today Show… just to name a few. And while all of this has been amazingly awesome… I’ve not blogged about it much.

Because not everything is public.

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At the Blue is the New Black party to celebrate One Million Strong kickoff

No, there are no secrets I’m hiding. My marriage is great. Daughter is amazing. All-in-all, things are going really awesome here. But in the midst of a crazy few months, I’ve taken the slow moments I do have to soak it all in and process how I’m feeling – and not through the Internet. Sharing links to social media are easy. Writing blog posts about the experiences – not as much. While this blog is an amazing tool to share my life and my thoughts with others, I’m learning it’s OK to not share everything. Or at least right away.

There are some moments reserved just for me and my family. Some experiences that I’ve wanted to process and think through before posting about. Some days that weren’t ready for the headlines. And I’ve come to let myself be OK with that.

image (2)

At the White House, receiving a copy of the presidential proclamation for March 2014 as Colorectal Cancer Awareness Month

Some who go through cancer or really, hard times in general, speak out right away. Others take a little while to get there and find their voice. And for me, I’ve gone back forth depending on the season. Sometimes I’m ready to say a lot; other times not so much. And what I’ve learned over the past three months of my “blog silence” is that it’s all part of the journey. God uses our experiences to help others when we’re ready. But sometimes that takes a bit of time to get there – or at least some time to process things personally before they inspire others publicly.

There’s no one way to fight or survive cancer. The different layers and phases are all part of the journey. Sometimes I speak out and blog about what’s happening. Other times, I don’t. Going quiet is OK. But, as this blog post shows, I don’t stay quiet for long.

March 22, 2014 at 10:07 am Leave a comment

ADOPTION AFTER CANCER: INTERNATIONAL ADOPTION

A little while ago I kicked off a new blog series with a social worker and to-be adoptive mama friend, Nikki.

We kicked off our first post – Adoption After Cancer: What Are My Options?

Today, we introduce our second post and talk specifically about international adoption. If you have ANY questions, leave us a comment or visit Nikki’s blog to get in touch with her directly!

INTERNATIONAL ADOPTION + CANCER

Nikki-desimone-pauls-msw

Nikki DeSimone Pauls, MSW

Questions answered by Nikki DeSimone Pauls, MSW – September 2013

1. Can I adopt from ANY country if I’ve had cancer? If not, which countries are closed to me? 

Countries open for cancer survivor adoptions depend on the type of cancer, length of time since the patient has been in remission, and again, that all important doctor letter. (See our first blog post.) The only country that was giving a firm “NO” to cancer survivors was Russia, but that’s not even an option for anyone now.

2. Are there any countries that cancer survivors have an “easier” time adopting from? What are some good options?

There are some countries that perhaps would be considered “easier” in terms of cancer survivors adopting. This includes most of the African countries and Haiti that generally have less stringent requirements of adoptive parents in general. However, if interested in adopting a special focus (aka. hard to place) child from China, agencies are having some success in getting “waivers” for their clients for all kinds of things, past history of cancer included.  Colombia also has been pretty good in giving approval to families with a cancer history who have a favorable doctor letter. I think Russia would have been the only country that would have been too big of a challenge.

3. Is my wait time extended in international adoption because of my cancer history?

Absolutely not. If you are approved for adoption, regardless of your past history, you are now in the waiting line just like everyone else. Most international adoptions are pretty organized and the countries process applications in the order they are received, so they are just processing one after the next, not skipping over people due to health history or background.

4. What kind of physicals are needed to adopt?

This depends on what country you are adopting from.  Some are pretty easy, such as Ethiopia, that is just a quick letter from the doctor that says “I have examined (name) and find her/him to be in good health and free of communicable diseases.”  Some other countries, such as China, have more significant forms where doctors fill in blanks about health history, current issues, medications, and require tests for HIV and TB. Any cancer survivor should expect to prepare an additional letter from his/her oncologist about the cancer, treatment, length of time in remission, and likelihood of recurrence.

5. What types of documentation do I need to provide to internationally adopt as a cancer survivor?

You will have to comply with the medical form or letter as required by the country, and then will also need to provide a supplemental medical letter, as summarized in our last post about adoption after cancer.

6. Would you recommend me look into international vs. domestic — or does cancer history impact that at all?

This comes down to where you feel more of a connection. It’s nice that we have a choice in this day and age on where and how we can complete an adoption and a cancer history does not prevent a person from one or the other.

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We think adoption is SUPER!

7. Do cancer survivors have an “easier” time adopting one method over another?

I would say that perhaps domestic adoption would be “easier” for folks with a history of cancer because they are being chosen by the birth parents.  An individual with a cancer history adopting internationally might have to gather more medical letters or documents to present to the country for approval, or get a medical waiver, whereas, if a birth parent domestically choses the family, she/he may not be concerned about the health history. All this to say, I certainly would not rule out international adoption, it just may result in more hoops to jump through.

8. Do other countries understand cancer like the U.S.? Anything we can do in a home study to help the process go smoother?

I think with medical advancements in other countries, we are all starting to understand cancer better. However, there are some developing nations that still do not understand quite as well as we would like.  It is through people adopting from these countries that we can advocate for our cancer survivors and teach these countries the great medical advancements and successes we have in 2013!

9. Does it cost more to adopt internationally if I’ve had cancer?

Absolutely not! When you begin an adoption process, your agency should provide you with a fee agreement and nothing should deviate from that. The only potential additional cost to a cancer survivor would be if you have a doctor who charges you $25 or $50 to write this supplemental letter. Some doctors offices charge extra for letters or paperwork processing. But, regardless, you will not be paying extra money to the agency or country due to your health history.

10. What if my cancer returns when I’m in the middle of an international adoption? What if I’m doing post-placements?

This is a tricker question and has three variables.

1) If the cancer occurs again while you are waiting for the adoption, my advice would be to put your status on hold and focus 100% on your treatment. If you are a cancer survivor and reading this, you understand better than I do how important it is to keep your “head in the game” with your treatment.  Focus on getting rest, eating right, keeping your strength up, praying and giving what you can to your work and your families. To put an adoption in the middle of that…I would say that’s the variable that can wait and the responsible thing for everyone involved is for you to put your application on hold.

2) If you are in the post-adoption phase of your journey, God bless you! You are then running around after a toddler, trying to bond with your new child, in between chemo, getting drained and trying to get some rest. Bless your heart. Your mom or best friend is going to be more helpful in this time than your social worker will be! But seriously, other than you dealing with your health and crazy life situation, your adoption should not be affected as it has been finalized and that child now is just like a biological child.

3) If you are in the post-placement phase of your journey (meaning the adoption has not yet been finalized) I can’t venture a guess how the judge or commissioner in your municipality would handle this. This is going to be a question for your legal counsel. I once went to court for an adoption finalization with a family who disclosed, under oath, in court that the reason the mom didn’t travel to adopt the child is because she found out about her breast cancer about eight weeks before she was set to get on a plane to adopt internationally. Her husband went by himself and she blamed her staying home on her hectic work schedule. I believe the perfect “0” my mouth made for a solid 30 seconds showed the judge my complete and legitimate surprise when the mom made this disclosure during the hearing! The judge approved the adoption, but he was not happy. However, he felt that removing the child would do more harm to the child who had been in this couple’s home for six months. Which, is absolutely true and of course, agreed. So that’s just one example, but certainly not exhaustive of all the possibilities. Consulting your attorney is going to be key if this situation presents itself.

11. Are there any groups or agencies that are “cancer survivor friendly” in regards to international adoption?

Again, for most international adoptions, getting a waiver is going to be necessary. When you are researching agencies, ask them their thoughts about how likely it would be that they could get you a waiver. Most ethical and compassionate agencies will process this for you before you have even applied with them or paid a penny. It is a fine request for you to ask this of them before you start paying.

FYI - you CAN adopt if you've had cancer.

FYI – you CAN adopt if you’ve had cancer.

12. Why do some groups have a waiting limit on how far into remission cancer survivors must be before they can apply?

I think that’s to do with our thoughts as social workers and adoption professionals about safety for the family. Adoption and parenting are hard enough in and of themselves. Battling cancer is hard enough in and of itself. Trying to make all that happen together is almost unimaginable.  Trying to bond with your new child, while dealing with cancer treatment, or being in-and-out of the hospital during those formative months of attachment certainly add an extra layer that we would all prefer not be there. With sufficient time and a strong letter from the doctor, it shows the family is more set up for success out of the gate.

The bottom line is, you can see there is a lot of gray in this area. But talking with your agency, being honest, and having a cooperative oncologist are going to be key.

Cancer is very common now and everyone is becoming more knowledgeable about it. It is no longer the firm “no” that perhaps it once was in the past.

Stay Tuned…

Have a question we didn’t answer? Leave us a comment! And stay tuned for our next post – adopting domestically after cancer!

October 21, 2013 at 6:28 am 1 comment

Jesus Doesn’t Fix Everything

hope-and-faith-through-cancerI was “officially” diagnosed with Lynch Syndrome last week. At first, it didn’t phase me. But as the days went on and I took time to review the paperwork, it began to really sink in.

The implication of living with a known genetic disorder is enlightening yet heavy. It’s good on one hand – aggressive monitoring for me and preventing disease in family members is a plus.

But it’s also hard – loss of a ‘normal’ doctor-free life and a reminder of a journey paved with loss also knocks at my door.

I’ve taken the past week to let it all sink in. Rather than brushing it to the side as if it’s “no big deal” (my pattern in the past), I’ve really tried to be introspective with my feelings.

Especially my faith.

And then today, a sermon came along and stopped me in my tracks when the preacher said:

Jesus Doesn’t Fix Everything – But He Does Help us Through It.

Come to Me All Who Are Weary

I grew up in a Christian community that like it or not – carries unspoken rules on how we handle trials in our lives. It’s part of the gig – which I would never trade. But, there are a few things I would change.

It’s typical for us to respond to trials thinking if we pray hard enough or have enough faith, Jesus will take away our situation and fix everything. As Christians, we put a smile on our face and say we’re trusting God without really letting ourselves grieve.

Rejoicing, encouragement and joy through trial is certainly part of the journey. God meets us in our despair and provides hope – so I’m not saying this doesn’t happen.

All too often though, Christians spit out quick verses like nicotine patches, hoping they’ll take the deep grief away. But ask any smoker – those patches don’t always work. And sometimes, our loss or sorrow is so deep, we need more than a quick devotion or verse to get us through.

Jesus says, “Come who are weary…” not “Come … although you’ve got yourself already pulled together.

Struggling with Faith in the Midst of Trial

Jesus wasn’t immune to grief or sorrow – in fact he was surrounded by it. So while he might not “fix” everything, he does provide what we need to get through it.

A holy perspective on any trial will change everything.

Today, “Terror in Boston” is scrolling across my television screen. I have friends suffering from marriages falling apart, children getting sick, deep depression taking hold, and checkbooks bouncing.

Lots of tears. Lots of cancer. Lots of pain. Lots of fear.

Trial is something we will all deal with at some point.

If you’re looking for hope or guidance on how to get through trials, I suggest taking an hour and listening to the sermon below. There comes a point when reciting verses and plastering on a cheery smile won’t hold you through some of the darkest days.

And hearing that it’s OK – and how to still have faith in the midst of it – was a game changer for me today. I pray that others will also find this extremely encouraging and helpful.

No, Jesus doesn’t fix everything. But, he loves us and will help get us through.

Trial & Jesus
1 Peter 1:3-9
Mark Driscoll – Mars Hill Church
Listen to the audio here: http://marshill.com/media/trial/trial-and-jesus

April 19, 2013 at 10:28 am 3 comments

Wanting the miracle and preparing for the fight | Faith and Cancer

Long time no post. I know… I’ve been busy.

But today’s revelation is blog worthy.

For some of us, God miraculously removes our cancer. For others of us, we have to fight.

Both roads are equally part of His plan. 

Both roads are good.

Jerichos and Ais…

joshua-sermon-series-graphic

Graphic from The Avenue Church

We talked about Joshua of the Bible today at church.

Most of us know about Jericho – Joshua’s squad marched around the city and the walls fell down.

But just a few chapters later, there’s another city, Ai, which God also told Joshua to seize.

Except this city didn’t fall like Jericho. Joshua had to follow God’s strategic plan for Ai to conquer it.

As my pastor explained, “Sometimes God gives us “Jerichos” in our life – our challenges can be tackled with ease and creativity. Other times, God calls us to “Ai” – our challenges must be faced with strategy and toil.”

And then it hit me.

This can apply to the fight against cancer, too.

Two roads to the fight against cancer

For some of us – our cancer experience is a Jericho.

God miraculously takes away tumors and cancer cells. The cancer goes away. We are healed.

For others of us, the road is not so easy. Roadblocks. Recurrence. Treatment. We put things in place to help us survive… which is not even a guarantee.

Even if we do not get dealt the Jericho, it does not mean that God’s turned his back on us.

We have to remember what “victory” truly means.

Just take it from Joey…

fight-cancer-hospital-hallwayAs a youth, I remember Joey Butler’s loud voice echoing through the old chapels at youth camp. I was saddened today to read an article in the KC Star about his advanced disease.

But just like God used him to encourage my young faith as a teen, I was encouraged today by his words now as a fellow cancer survivor:

“This circumstance [cancer] is teaching my family and friends to trust God,” he says. “This is not all there is. You know there’s more to come after this life. … This is not our final destination.”

For Joey, it seems that he didn’t get the road to Jericho when it came to his cancer diagnosis.

His cancer journey is more like the conquest of Ai. Aggressive treatments to fight the cancer have failed. I’m humbled by his response:

“Here’s what belief means: It means I put all my belief, all my weight, on Christ. I’m all in,” he continued. “I’ve had no regrets.”

But Joey knows that the “victory” in cancer for us Christians is not that we defy death.

Instead, it’s that we let God use our cancer journeys to save lives.

Even if those roads to victory look more like Ai than Jericho.

March 10, 2013 at 11:22 pm 1 comment

“No” is not the issue

I tend to stay pretty busy. Well, that may be an understatement. Really busy. And even after typing that, I feel the guilt coming on. Those email forwards about BUSY = “Being Under Satan’s Yolk” did have an impact on me although I didn’t think I gave them much weight. Grrr. And just admitting that we stay really active already has me feeling bad.

This week I had a conversation that got me thinking about my schedule and my life pace in general. I think looking from the outside in, it might seem that we … or at least I … have an issue with saying “no.” And while at times that’s certainly at play, this week I realized there’s more to it than that. I don’t say “no” so much because I want to say “yes” so much. And fortunately … or unfortunately … I live with the reality that if I don’t say “yes” today … there might not be another shot tomorrow.

Live Like You were Dyin’

cancer-survivor-stories-arch

Talk about live as we were dying – I went up in the St. Louis Arch again.

As a writer, I’m not a big fan of clichés. But I don’t know any other way to put it – my cancer survivorship really does make me appreciate and live for today. As I’ve reflected on my conversation this week, I’ve realized all the different ways this plays out in my life … even down to my schedule. I do stay really busy. But I’ve also had some awesome life experiences thus far because I said “yes” to an opportunity, or sought out the opportunity because of a passion or curiosity.

Sure, sometimes it is time to say “no.” The reality of timing, finances, responsibilities and overall health (physical, mental and emotional) does not make me exempt from needing to learn that little word and practice it more. And I do use it often when we need a break or extra rest. But I guess  as I continue to work out my survivorship and understand all of its implications, this is just part of it. “Live like you were dying” as the country singer says, is definitely part of my life.

More Birthdays?

I don’t make plans for my 50th birthday party. Or honestly, even my 40th. And it’s not because I don’t hope to have one, or even plan to have one. It’s because I don’t count on it. Regardless of if I see age 30, 40 or God-willing… even age 50 … I want to be glad I took the chances, experienced the opportunities and invested in the people along the way.  If I do make it to 50 – that will be great. A big party will ensue. However, in the event I don’t make it to 50 – I want to embrace it the best that I can. If there’s ever a “no tomorrow” may I still be counting my blessings because today in itself was pretty great.

July 14, 2012 at 8:10 am Leave a comment

A Third-World View of Survivorship

Over the past several days, I’ve had the opportunity to get together with Taylor. While unknown to most of the world, those who’ve seen the documentary Rainbow Town know who I’m talking about. Taylor is one of the children featured in a film about a Liberian orphanage and is currently traveling around the United States. My friend Amy hosted him over the weekend and today he spoke at our church. As I’ve gotten involved with Rainbow Town, my heart’s grown for this amazing group of people in West Africa. Not only are they beautiful, courageous and strong. I’m convinced they’re some of the most faithful individuals on the planet.

rainbow-town-taylor-avenue-church

Taylor hanging out with our life group from The Avenue Church!

Emotional roller coaster

I’ve experienced many emotions during the few interactions I’ve had with Taylor. I imagine this is common when you either travel to third-world countries or meet people from them. Guilt – I was born a “Westerner” and have “simple” privileges like cars and credit cards. Sadness – no child should have to live through war. Embarrassment – he must think we’re so lazy. (He walks 1 hr 45 min to school ONE WAY!) Excitement – his passion to be a pastor is contagious. Joy – God SAVED him! And most of all – humbled. Now that’s a survivor.

Defining Survivor

I am a survivor of cancer. And Taylor, he is a survivor of war. And while I certainly am not trying to liken our experiences – I do understand life-threatening situations that leave physical wounds, emotional scars and life-changing consequences. We both identify with the word “survive.”

danielle-burgess-taylor-rainbow-town

What an honor to meet this guy!

The thing about Taylor though is that he doesn’t find his identity in survivorship. He’ll openly talk about being orphaned at birth and tied naked to a tree as a 4-year-old when rebels overtook his country; however, Taylor always ends with the point that God saved him. God had mercy on him and rescued him. No calls for pity. No room for tears. He shares his story to share about Jesus.

Finding Purpose in our Pain

Taylor’s story isn’t about Taylor – it’s about Christ. And that’s the way it should be. This teen has already found the purpose for his difficult life circumstances. He has no question about why he survived war, and what he’s to do now. And I’m rapidly taking notes.

I live in America where we process our feelings and talk about what happened. In the midst of it, we also get a “free pass” when it comes to our faith. We often aren’t pushed to lay down the pride and selfishness that can come with surviving something so awful. (After all – we do get a lot of attention and free t-shirts.) Instead, we can fall into the trap of self-pity and let ourselves off the hook. We think we’re acting like the Psalmist when we question God and blame him. However, for many of us – we can stay camped out at that place way too long, or never fully let God back into our hearts to do His work.

I’m thankful for the opportunity to have met Taylor. He’s showed me once again that there is purpose in survival that is far beyond ourselves. God works for our good and He loves us. No, life’s not always easy. And things aren’t going to be fair. But that doesn’t take away the fact that we are to fear Him and that He wants to use us. If we will just open up our hearts to Him, the journey through survival will make so much more sense… from any part of the world.

July 8, 2012 at 9:52 pm 2 comments

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