Posts Tagged ‘cancer knowledge network’

Finding Fertility as a Young Adult Cancer Survivor

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(As seen in Cancer Knowledge Network’s #YARally)

“I’m sorry to tell you, it’s cancer. You will need an emergency hysterectomy followed by chemotherapy and radiation.” With one fell swoop, my life, dreams, and plans dramatically changed. Not only did I learn that I had cancer, but also that my chances of bearing children were erased.

Prior to my diagnosis, my husband and I spoke frequently about having children. We dreamt about how many we would have and what their names would be. We laughed at who they would take after. Would they be fiercely independent (and stubborn) like their mom or gentle and patient like their dad? Would they have Matt’s tan complexion and my blue eyes? We noticed every pregnant woman passing by and couldn’t even walk through Target without perusing the baby section, dreaming of all the possibilities to come. Babies were destined to be in our future.

From a young age, we both felt called to be parents. Though we initially got married with the five-year plan in mind, after our first year of marriage, we were both struck with a bad case of baby fever. We no longer wanted to wait and were ready for a bundle of joy. However, no sooner could we begin the journey to pregnancy before a monstrous disease barged through the front door of our lives. Cancer began to fill every area of our perfectly prepared existence, quickly leaving no room for children.

Dreams began to disintegrate right before our eyes. No matter how tightly we clung to our hopes of bearing children, the dust of our wishes slipped between our fingers, disappearing into eternity.

We begrudgingly traded morning sickness for chemotherapy induced nausea. OB/GYNs for oncologists. Ultrasounds for PET scans. Mom bobs for bald heads. Baby showers for fundraisers. Dirty diapers for hospital bed catheters. Pint-sized outfits for hospital gowns. Pregnancy pains for surgery recovery. Labor and delivery for a radical hysterectomy. Motherhood for survival.

Shortly after my diagnosis and prior to my hysterectomy, we met with a fertility specialist. We learned about preserving fertility and what that could look like for us if we chose to walk that path. She versed us on the difference between surrogacy and gestational carriers, and taught us what an IVF journey looks like. We spoke about harvesting eggs, creating embryos, and freezing them for future use. We learned that not only could we adopt children, we could also adopt embryos. Our fertility doctor shared organizations that financially covered the cost of IVF for cancer patients. The immense knowledge that we learned in that first meeting not only gave us peace, comfort, and understanding, but also left us incredibly overwhelmed. How would we even begin to figure out what to do?

Because of the aggressive nature of my type of cancer, we were given a short amount of time to decide which route we would take. In fact, in our case, we had one hour to make the most life-impacting decisions one can make. Diagnosed on a Wednesday, by Friday we needed to have a game plan. The reason our decision needed to be made so quickly was due in part to the fact that the following Monday I would either be going into surgery, or beginning the four week process of harvesting my eggs. The single most terrifying and stressful moment thus far has been figuring out what path to walk.

Would we move forward with our fertility specialist and begin the process of harvesting my eggs in order to create embryos that someday would become our biological children, or would we choose surgery with my oncologist, saving my life but reducing the chances of creating a biological family? Ultimately, after endless tears, prayers of desperation, and emotional pain, my husband and I reached a conclusion. The priority was my life, and regardless of if our children were biological or adopted, they would need a healthy mother. The following week I underwent a radical hysterectomy.

They say hindsight is always 20/20 and I agree. After further testing of my tumor, we learned that my diagnosis was much more critical than we initially thought. I was given less than a 20% chance of surviving the first year. The type of cancer I was fighting was hormonal and in order to harvest eggs, I would have needed to be on daily hormone injections. We cringe at the thought of what might have happened had we chosen that path. I would likely not be here today.

The reality is, every young adult with cancer faces a multitude of decisions including matters of fertility. Many are fortunate enough to have doctors inform us of our choices before making final decisions that may inhibit fertility in the future. However, too often young adults are not made aware of the finality some treatments may cause for their dreams of having biological children once they enter remission. A cancer diagnosis brings fear, and many treatment plans are decided under pressure and fear of survival without consideration of the lifelong ramifications of rushed decisions. Before making treatment decisions, young adults need to feel comfortable with the full scope of what life during treatment and life after cancer will look like with each option.

Each diagnosis is different than the next. Therefore, each treatment journey looks different as well. Depending on what type of cancer, the location of the malignancy, staging, and necessary treatment, preserving fertility should be dealt with on a case-by-case basis. My decision may not be the same as yours, and that’s okay. Young adults should be aware of every option before reaching a conclusion for their fertility. Not only is there IVF, harvesting and preserving embryos, but should the route of forgoing chances of a biological family be chosen (or required), one must know that that does not close the door on hopes of a future family. There are several options for family planning, and the choices continue to expand in number as our advances in the medical community continue to grow.

My husband and I have always wanted to adopt, and once we grieved the loss of a biological family, we knew that my diagnosis was affirmation of that path. However, we feared that due to my medical history, we would be disqualified from adoption. I’ve lost my ability to conceive and carry a child, would I now lose the ability to even adopt one? After further investigation and a handful of helpful adoption advocates and agencies, we have learned that my diagnosis will not affect our chances of adopting. In fact, though we are only in the beginning stages of our adoption journey, we have seen several friends, who are young adult cancer survivors, with beautiful, successful adoption stories.

Though a young adult may not be ready for children yet, they should be well informed of their options before making crucial decisions. This is where our oncologists, fertility specialists, and advocates play a significant role. A cancer diagnosis can be emotionally paralyzing — a fog that causes decision making to feel impossible. Medical professionals have an important duty to walk alongside us, advocating for our future. It is imperative that oncologists and fertility specialists view our fertility and family planning as if it were their own.

Most young adults are unaware of the multitude of family planning options that exist in the medical community, but with the help of caring doctors, finding fertility can be a much less daunting task. There is hope for finding fertility and family planning as a young adult diagnosed with cancer.

Jeremiah 29:11 (ESV)

“For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.”

“By The Way, I Have Cancer”… Dating After a Diagnosis

By The Way I Have Cancer PHOTO

(As seen in Cancer Knowledge Network’s, #YARally)

Dating

Finding “the one” in a world of seven billion can be a daunting task. Sifting through people while searching for compatibility, meeting with strangers for awkward conversation, and allowing yourself to be vulnerable with someone you hardly know is not for the faint of heart. As if dating isn’t difficult enough, dating with cancer can prove even more challenging.

Among everyday issues like discovering who we are and what we are meant to do with our lives, young adults face a variety of life changing decisions. We are completing education, paving a way for our future, and stepping into our careers. We are establishing friendships and seeking long term commitment and love. We are eager and expectant and ready to begin the next chapter with someone by our side. Yet as a young adult facing a cancer diagnosis, beginning romantic relationships can be complicated.

When diagnosed as a young adult, dating often gets put on hold. You become engrossed in your treatment plans and immersed in the grief that follows your life-altering news. Though many soon discover that a diagnosis doesn’t have to prevent you from living a fulfilling life, when the time comes to step out into the sea of dating once again, some young adults feel paralyzed about where to begin. Having a cancer diagnosis is like wearing a neon name tag. We stand out. Whether physically, emotionally, or simply by circumstance, we are different than our potential suitors. Therefore, we have a few more things to keep in mind when introducing ourselves.

Choosing when to share your medical history is an important factor to consider when entering a relationship. Sharing a diagnosis on the first date may frighten someone. Waiting too late may cause feelings of betrayal and dishonesty. Many don’t want to be labeled by a diagnosis and want to be seen for more than just a disease, but young adults should be considerate in telling others their medical journey.

Experts state that a safe guideline is to share the news on the third or fourth date. Generally, young adults should share medical history before emotional attachment begins. This allows potential partners to make informed decisions on whether or not to proceed with the relationship. Be open to both possible outcomes. Your date may be uncomfortable with everything that comes with your diagnosis, however, they may be understanding and desire to move forward. As it would be with someone you simply lack chemistry with, be okay with letting someone go. And if your potential mate is interested in continuing a relationship, foster an open and honest conversation about how cancer affects your life.

Cancer affects each young adult differently and no diagnosis, prognosis, nor side effects are the same. Most cancer survivors struggle with changes in their sexuality. Whether it’s sexual function, body image, or self-esteem, many face a multitude of challenges. When sharing your medical history with your partner, be willing to share the facts.

Chemotherapy, radiation, and surgery can cause drastic changes to sexual organs. Heightened skin sensitivity, lower sex drive, and infertility are common among young adults with cancer. Being open with your partner will help guide your relationship into a deeper understanding for one another. Always remember that intimacy is much more than sexual intercourse. Communication, trust, and commitment are conduits to intimacy as much as physical touch is.

Marriage

Some view me as lucky. My husband and I had been married for a year and a half when I received the news that I had an aggressive gynecological cancer. However, the fact that I was already in a healthy, stable, and committed long term relationship upon diagnosis did not make receiving the news or handling the journey easier. Cancer amplifies hurts and wounds, as much as it does love and respect.

Unfortunately, many marriages do not survive the trauma, heartache, loss, and difficulties that cancer brings to the relationship. Couples must work not only to save the life of the person afflicted with the disease, but also to save the life of the marriage. Each individual grieves differently, and my husband and I found ourselves at different ends of the grief scale. At times I would be experiencing deep sadness, but my husband would be experiencing anger. Other moments I would be encouraged, but my husband would be feeling frustration. My husband had hope when I had none and vice versa. Because no two people are identical in emotions and experiences, patience, forgiveness, and love are key in maintaining a healthy relationship.

Four years ago, as my husband and I sat in the car in the hospital parking lot after hearing of my diagnosis, he looked at me and said something so profound it has defined our relationship. “Some may say I didn’t sign up for this, but I did. I vowed to you, ‘in sickness and in health,’ and I’m not giving up on that promise.” Among many reasons why our marriage has thrived amidst this disease is that we simply committed to one another. To love, respect, and hold each other up. Marriages don’t have to fail after a diagnosis. They can thrive and grow into something more beautiful than you thought possible.

Relationships can be fun and they can be challenging. If you are a young adult cancer survivor and are ready to enter into a relationship, remember to be kind to yourself. Though being vulnerable is often more difficult with a diagnosis, dating requires vulnerability. Do not let fear of rejection keep you from finding love, happiness, and a fulfilling long term relationship. Keep in mind that there is someone for everyone, and though you may have to filter through some duds, you can and will find the perfect person for you. If you are a young adult married cancer survivor or spouse, remember to be gentle, patient, and forgiving. Cancer has already taken so much from you, don’t let it steal your love as well.

Philippians 1:9 (MSG)

“So this is my prayer: that your love will flourish and that you will not only love much but well. Learn to love appropriately. You need to use your head and test your feelings so that your love is sincere and intelligent, not sentimental gush.”

#YARally With Cancer Knowledge Network

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A variety of exciting developments have been stirring lately! If you follow me on Instagram or Twitter, I’m sure you’ve seen posts about my recent business trips to New York City, Orlando, and Houston. I am touched that my story is impacting and inspiring so many, and in turn that I am able to travel and share a message of hope and faith around the world. We were never meant to walk alone and I am passionate about walking beside others in their struggles.

Among several recent ventures, I’m honored to officially announce my partnership with Cancer Knowledge Network. CKN is one of the largest cancer communities in Canada, and their goal is to help bridge the gap between young adult patients and oncologists. Because of the work of CKN and other organizations like Stupid Cancer and Livestrong, the YA (young adult) cancer community is growing in knowledge, understanding, and impact. When a young adult is diagnosed with cancer there is no longer a void of community, as many have rallied together to let the world know that we are not alone.

As the spokesperson and partner of the #YARally campaign with CKN, I’ll be writing several articles on a variety of hot topic issues that affect young adults in the cancer community including but not limited to body image, sexuality and relationships, finances, and fertility. Too often, the communication between doctors and patients is muddled and our goal in this project is to facilitate personal narratives combined with clinical resources in order to bridge the gap. We have recently launched our campaign, and I invite you to join this journey with us. Make sure to follow #YARally on Twitter, as well as my Instagram and Facebook pages in order to stay updated as this project develops. In addition, I will be co-leading Twitter chats and would love to talk with many of you on the topics being discussed in this campaign.

“It is my goal that by partnering with CKN, our voices will be heard where often they are overlooked. I invite you to join me in the movement to shine the spotlight on our generation as  we face challenges many simply do not face. Cancer doesn’t define your life, and I hope to rally beside the men and women of my generation to help pave the way for improved care and heightened awareness.” – Stephanie Madsen

Visit Cancer Knowledge Network’s #YARally with Stephanie Madsen to join the movement! I look forward to opening the conversation and raising further awareness for this critically important young adult community.

1 Thessalonians 5:11 (MSG)

“So speak encouraging words to one another. Build up hope so you’ll all be together in this, no one left out, no one left behind.”

 

 

Caregiving: A Perspective From Both Sides of The Coin

(As featured on Cancer Knowledge Network)

Most of you know me as the writer in our family. Little do you know, my husband is talented in written form as well. Recently, Matt and I were asked to co-write an article for a Canadian publication. We were invited to share our perspectives on caregiving and the vital role it plays in one’s journey through cancer. I was, and still am amazed at my husband’s words. They have touched my soul, just as I know they will yours…

Stephanie (Survivor):

A cancer diagnosis never affects just the person afflicted with the disease. Though the doctor found a malignant tumor growing inside of me, she might as well have told my husband that he had one growing inside of him as well.

In June of 2010, I walked down the red-carpeted aisle of an old, spacious, and magnificent cathedral to marry my best friend. From our second date, I knew he was the one I would spend the rest of my life with. We shared laughter, adventure, and innumerable conversations. He stole my heart and has protected it from the moment it entered his grasp. Within weeks of meeting each other, we fell in love and began planning our future – when we would have children, where we would live and raise our family, even the color of paint we would choose for the walls of our dream home. We had life figured out and were valiantly prepared to take on the world together, hand in hand.

One and a half years later our plans were derailed. At the age of 25, I was diagnosed with a rare and aggressive form of cancer. It was as if the canvas we had sketched our dreams on was wiped clean. The plans we had set forth were redefined and put on hold. We soon entered into the gates of Cancerland and were quickly thrust into an unknown arena. Decisions had to be made, and treatment began immediately.

Through multiple surgeries and treatments, recurrences, and cancer-free scans, my husband has stood firmly by my side in every moment. He has courageously taken the role as my caregiver, and has sacrificially offered to help with my countless needs. Not many realize that I am not the only one in this fight. My husband is firmly planted next to me on the front lines. When I rested in hospital recliners receiving treatments, Matt sat on the uncomfortable chairs beside me without complaint. When I was weak and pitifully sick, he would assure me and rub my back in comfort. When I had moments of depression and couldn’t battle fearful thoughts, he would encourage and pray for me. He shaved his head when I lost my hair so I wouldn’t feel alone. At my weakest, my husband mustered up strength and bravery to help me through. All without second guessing or complaint.

I’ve often shared that the role of a caregiver is equally as important as the patient fighting cancer. Though I was the one ingesting toxins to battle the disease within me, my husband fought just as hard behind the scenes, making sure I could withstand the fight. He has sacrificed so much just to care for me. His patience, concern, encouragement, compassion, and love have altered the way I fight cancer. I am stronger with him beside me.

He is my guardian. We fight this disease together.

Matt (Caregiver):

Have you ever seen the movie The Bodyguard?

Kevin Costner is a total badass in that movie. I watched it a lot when I was a kid. He ran around, protecting Whitney Houston from stalkers and bullets. He was a hero. I wanted to be a hero.

I can’t say I was fully prepared when my life started to parallel that story. My wife was diagnosed with a rare and aggressive form of cancer over two years ago. When we got the news, I knew that the roller coaster ride would soon commence. Life would never be what it once was, nor would it play out in the way I had intended. Instead of buying a house, a car, and having kids, we would be shuttling off to surgeries, chemotherapy treatments and radiation appointments, all the while keeping track of our mileage in hopes of writing the expense off on our taxes.

Let’s face it; in reality, I’m not fending off over-obsessed fans or valiantly diving in front of bullets (thank the Lord). My role is more concealed. Instead of being front and center, I’m like the Kevin Costner waiting in the wings, keeping an ever-watchful eye on everything that’s going on. And unlike Kevin Costner, there’s not a whole lot I could do except be there. I can’t make the disease go away. I can pray, and I can be there whenever my wife needs me. When my wife was sick in the middle of the night, I was awake with her. When she was too weak to get out of bed on her own strength, I helped her up. When all she could or wanted to do was lay on the couch, that’s all I did, too. I instantly became a professional chauffeur, personal assistant, and expert dog taker-outer. If I wasn’t at home or at the hospital, I was at the pharmacy, standing off to the side while the staff gathered up the hundreds of dollars worth of home injections and pills that I didn’t have the capacity to afford. As a caregiver, you do whatever it takes.

In those times, I’d often think back to the day I married Stephanie. “For richer or poorer… In sickness and in health.”

So this is what that meant. This is what I meant.

Being a caregiver is not a glamorous gig. As a caregiver, you hold down the fort. Your partner is down, and it’s all on you now: the house, the kids (or, in our case, the dogs), the money, the bills, making sure your family is fed, that they have a roof over their heads, clothes on their backs… and the whole “giving care” part. That’s your job now. Your job is no longer just your job. You will lose sleep. You will not be able to do some of the things you used to enjoy. You will sacrifice your own health to ensure the health of your loved one. And you will need never-ending amounts of grace and forgiveness.

You will do all of this, and you will likely not be recognized for any of it. You will feel left out. You’re in the wings, remember? When things go bad, prayers and support are 99.9% directed at your loved one. When things go well, congratulations and well-wishes will also be 99.9% directed at your loved one.

You’re the unsung hero, the bodyguard. Stay out of the way and save the day.

Often times, my wife gets told that she is someone’s hero. Nearly every day, she hears that from someone. People lavish her with praise, saying she inspires them. They want to make sure that Stephanie knows how much she means to them.

For me, my wife is the one telling me that I’m her hero. When she is everyone else’s hero, I’m hers. She sees what I do, the sacrifices I’ve made to make her as comfortable as possible as she fights the hardest fight of her life. She appreciates me. That’s awesome. That being said, if you know someone who is a caregiver, tell them how you feel about them. Do you appreciate them? Tell them. It’s amazing what encouragement can do. For every person you know who is faced with cancer or some other life-altering affliction, there is also someone in their corner who, if you’re honest with yourself, you likely have never noticed.

No one is meant to fight alone.

Philippians 2:4 (ESV)

“Let each of you look not only to his own interests, but also to the interests of others.”

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