Silly Me for Trusting my Doctor

“All of my doctors didn’t listen to me.”

db-melissaHer words echo on my screen as the news of her death still sinks in. Memories travel back to several years ago at the McMaster’s house, sitting in Adirondack chairs on the deck above the ripples of Lake George, as survivor Melissa Bates shared her story with me. We’d connected online many months prior; as a 20-something rectal cancer survivor she’d found me through The Colon Club. Meeting face-to-face for the first time felt like a reunion between two soldiers who’d been through a war together.

 

I knew parts of her story. She too was from the Midwest. Her symptoms showed up in high school, she was diagnosed at age 20 while in college. I interviewed her for her 2012 Colondar bio and asked her questions to help me understand the full scope of her journey. I learned there was more to her than cancer. She loved adventure and adored her family. She had lots of friends. Her passion was horses. She liked chocolate and milk – but not chocolate milk. While several elements of her story resembled bits and pieces of other survivor stories, Melissa’s stood out.

 

Unlike so many, including myself, who didn’t call the doctor when something went wrong, Melissa called the doctor when she noticed symptoms.

Over.

And over.

And over.

 

MelissaInternal hemorrhoids and stress seemed to be reasonable explanations for her doctors who convinced themselves that the 20-year-old consistently calling their offices wasn’t sick. Thank goodness for her persistent spirit and educated approach to treatment. She finally found a GI specialist with a cancellation who would see her. She drove five hours to the appointment where he biopsied a tumor discovered during his exam. She was diagnosed with stage III rectal cancer just days later when pathology reports came in – sitting on a bus by herself surrounded by other college students at Iowa State who had no idea her world had just come crashing down.

 

Surgery to remove the cancer left her with a permanent ostomy. She fought doctors yet again for fertility options before treatment began; she wanted to be a mom one day. Unfortunately, her cancer was aggressive. Although she experienced a season of remission, it later recurred and after a long, strong fight, it eventually took her life this week.

 

Swirled emotions of missing a friend and pushing through survivor’s guilt flood the colorectal cancer community each time someone dies. Especially when it’s a close friend who’s also fought the disease ‘way too young.’ As pictures of her over the years show up in our news feeds this week, we respond with the only words we have, “This is so unfair.” The injustice of her short life is unbearable; we struggle with our lack of control. We hate that we can’t change the facts.

 

e-mel-dbAs a friend who knew her story, I wrestle not only with the reality of her passing but the burden of keeping her voice heard. She had an indescribable spirit that inspired each of us privileged to consider her a friend. The obvious message of her journey is one to the medical community – no amount of blood in the stool is normal. Never ignore or deny a patient who insists something in their body is wrong. Never assume cancer can’t happen to someone young – even colorectal cancer in a 20-year-old.

 

But even as I relay those obvious messages, I hear her voice in the back of my head telling me there’s more. Kind of like the day we sat in the Adirondack chairs above the ripples of Lake George.

 

At the end of her interview that day, I asked her what she hoped her story would do for others. She gave me a kind smile, trying to mask the fact I’d just asked a big question she wasn’t prepared for. She gave me a simple, good answer about how she hoped it would encourage others to not ignore their bodies, and to push doctors to listen even when they say nothing’s wrong and make you feel crazy.

 

The next day she unexpectedly pulled me aside. Out came a crumpled, folded sheet of notebook paper filled with notes from front to back. She’d been thinking about my question all night and wanted to add more to her response. I rapidly took notes.

She wasn’t satisfied with the obvious lessons from her journey. There was more to know about Melissa Bates and her experience with cancer. Here is what she wanted the world to see – the spirit that will forever be remembered in my friend:

- Embrace people who are going through the same thing.

- Having colon cancer isn’t an old person’s disease.

- Life isn’t over once you have a colostomy. Having an ostomy isn’t as bad as I thought it would be. It’s improved the quality of life that I have. It was basically life or death and I chose life. Where I am in life, it’s only the beginning. My ostomy isn’t holding me back from what I want to do.

- Ask a lot of questions.

- Follow your heart throughout your treatment as far as what you think would be good for you.

- Believe in yourself and in your treatment team; that positive attitude helps you through everything.

- Take time to heal.

- Don’t go back to your normal life too soon.

- My faith has helped get me through everything. He has everything planned out and knows the plan more than we do.

- One thing cancer has helped me learn is take the time to enjoy life and don’t go rushing through it all of the time.

July 24, 2014 at 10:51 pm 2 comments

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!

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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.

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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

Happy Holidays From the Burgesses

Well, I didn’t end up sending out Christmas cards this year. A little 30th birthday bash kind of took up a lot of my pre-holiday time. But, I thought I’d wish everyone a very Merry Christmas through the blog.

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Thanks to all of you who’ve sent cute cards and fun photos of your kids our way. My you all are good looking.

As I recap the year, I find myself wanting to pinch my arm. It’s been unbelievably awesome in several ways. Here’s a quick snapshot of just a few of the reasons 2013 will forever be a favorite, and what I would have included in an old school Christmas letter.

Mae

Burgess001-smallerLet’s start with the obvious – this girl has amazing hair. Her cute little fro has always been just the perfect accessory to her charming personality but this year it’s taken on new heights. Literally. In addition to having some of the cutest locks on the planet, our 3-year-old is full of sass, love and imagination. She can turn anything into a magical kingdom where even something as simple as a spoon and fork at a restaurant become a “mommy” or “daddy” — or sometimes two princesses. She took up dance this year. She became a huge fan of the Muppets (thanks to Daddy). She enjoys playing with horses, going to the zoo and even going to concerts. She can often be found singing… and talking. This gal’s got a song in her heart and loves to engage in constant conversation.

Mike

Burgess069-smallerI’ll start with the breaking news – this stud just won his Fantasy Football league. It only follows suit with the kind of year Mike’s had where leading seems to be his thing. He’s the Creative Director at Turn The Page Online Marketing and enjoys his job. (No, he doesn’t miss teaching.) He’s led worship at church throughout much of the year. And, he led our family and two of our close friends to North Carolina in September for one of the most epic road trip vacations ever. Speaking of epic, he started jogging over the summer and found himself running 13.1 miles for fun. There’s not much more to stay except that he’s seriously the best husband and an amazing daddy.

Danielle

Burgess062-smallerThis year was a beginning and an end to several things for me. Obviously, I left my twenties. I also transitioned and made my marketing consulting and blogging business a “side business” as I began working full-time for the nonprofit Fight Colorectal Cancer. I’ve enjoyed getting to travel for work a bit and think I’ve mastered the carry-on luggage system. I ran my first 10K and started working out consistently. I had some blogs published by the Huffington Post. And I made some awesome new friends while at the 2014 Colondar shoot last June. Overall, it’s been a great year.

Goodbye, 2013

People told us to expect time to go quickly when we adopted Mae. Now looking back at almost three years, I see why said that. I blinked and suddenly she’s old enough to sleep in my old twin bed and go to the dentist.

I’ve been blessed with another year of health (I will be cancer-free for five years in June; I’ll be a 13-year cancer survivor in January.) God’s provided for our every need. And we’ve got more friends and family who love, support and encourage us than an after-church Chinese buffet.

To all of you out there, we wish you a very happy 2014. Here’s to another year ahead.

- the Burgess family

December 30, 2013 at 1:15 pm Leave a comment

Birth Family Christmas

photo 3(1)Tonight we kicked off the first of our family Christmas gatherings. But it was unlike any others we’ll experience this week. A local BBQ restaurant made a great ‘neutral’ meeting place as we traveled across town to get together with people we met a little less than three years ago. A group who we see only a few times each year, yet consider them family. Our birth family.

When we initially began our adoption process we requested a semi-open arrangement. We were cool with exchanging first names and maybe state or city, but we didn’t think we wanted a lot of contact with the birth family. Mae’s adoption came along unexpectedly and detoured our plans. The situation created an open adoption by default. And now looking back over the past three years, I couldn’t be more thankful that our plans and preferences changed.

photo 2(1)I don’t talk about our open adoption a lot, nor have I ever specifically blogged about it. But coming off of a night like tonight, I felt I needed to share about how wonderful this arrangement can be, and how fortunate we’ve been to have a birth family enter our lives. Sure, it’s nice to have a direct connection to Mae’s birth mom for reasons most would assume – health history and knowing her story, etc. But more than that, it’s amazing to have a birth mom, birth uncle and cousin and birth grandparents in the picture for indescribable reasons. There’s something about continuing and nurturing the bond of family even if it looks a little different from the ‘norm’ that is powerful. Redemptive. And all around blessed.

We sat and laughed tonight (mostly at my energetic three-year-old.) We told stories and caught up on life. We exchanged Christmas gifts. And more than anything, we all gleamed an unspoken appreciation for one another yet again. It happens every time we get together. And as the years go on and our relationships deepen, I know it will only continue to grow.

photo 1(1)I recognize that not everyone in an open adoption has this kind of relationship with their birth family members. There are a lot of other stories out there that aren’t so ideal. We’re lucky to have a birth family that’s kind, considerate and amazing with boundaries. They’ve truly made this an incredible experience.

Open adoption might not be for everyone, but I’m glad that it was the right path for me. Our birth mom is the strongest person I know and she continues to amaze me. Her love for [our] daughter has taught me more about selflessness than anything on this side of heaven ever will. Knowing the family my daughter was born into gives me even more appreciation and understanding of her. That in and of itself is an amazing gift – especially at Christmas.

December 23, 2013 at 11:30 pm Leave a comment

Crawling The Colon Into 30

It hit me early into this year that my 30th would be approaching. A complex bag of emotions soon arrived at my emotional doorway. My birthday is always bittersweet to me – it’s something about surviving and celebrating another year that gets me into this weird state of woeful yet sentimental and thankful. But this year, I was entering a new decade to top things off. A decade that if we were to be honest, many of my family, friends and doctors might have doubted that I see a near 13 years ago. A decade that like it or not (I loved my twenties), I was about to enter.

I thought about planning trips and friends’ gatherings to celebrate the big bash, but nothing seemed to fit. Nothing except the idea of bringing the Crawl The Colon tour to Kansas City felt right. So we got plans rolling. And everything fell into place. I mean everything. Not even a rain/snowstorm the day before stopped us. Or should I say Mark, the most amazing, dedicated driver that left extra early to make sure the colon arrived for my big day. There was something about the way the event went down that I knew it was “meant to be.”

There are so many people to thank for helping make my big b-day event a great success (see a list of a few of them below…). Not only was it a “success” in terms of event planning and fundraising (we raised close to $3,000 and estimate that we had between 200-250 visitors that day); but I cannot say thank you enough to everyone for helping me enter a new era with excitement. Not only did my birthday event make me feel extremely loved, but it allowed me to share my passion for colorectal cancer and my faith with my community.

I could not have asked for a better way to enter this new decade. It’s an unforgettable memory that will forever be a highlight of my life.

Enjoy Some Pics…

THANK YOU to everyone who sponsored, donated, volunteered and promoted!

The location…

Sponsors…

For the silent auction donations…

For coffee and cookies…

For live music..

  • Adam Chiarelli
  • Levi Dalton
  • Jonathan & Malarie Tucker
  • Jeff Class

For promoting…

December 22, 2013 at 6:48 pm 3 comments

Princesses

I always thought I’d have a boy. Rough housing and baseball – I was certain that was what my future entailed. So when we got a call about adopting a little girl, I wasn’t so sure. I’m not really the girly-girl type (outside of my fascination with huge earrings.) I wouldn’t even wear dresses as a child. But as our adoption went through and we’ve spent the last three years raising a little princess, I couldn’t be more thankful The Lord had other plans for me.

The pink and purple palooza has taken some adjusting, but I’ve learned a lot from having a little girl. The Barbies and larger-than-life headbands show me that feeling beautiful is an innate female desire, at least in some way. The careful way she stuffs a fake baby bottle into a cloth doll’s face shows me women are built to nurture. To mother. Her interest in ballet moves and love of a frilly tutu shows me ladies want to offer grace. And the obsession with everything princess reminds me daily that Christian women are truly a royal priesthood and daughters of the King – regardless of if tiaras are “our thing.”

I still don’t consider myself someone who’s super girly. And I do plan to get a ball into her hands at some point. But for now I’ll gladly wear the pink hair or dress up in pearls for my girl. Because she is showing me the purest form of the princesses we were born to be.

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November 16, 2013 at 3:53 pm 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

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