Lori Luedtke is a native Texan but has lived in Florida since 1996. She is married and has one biological son and two stepchildren. Lori was diagnosed with terminal brain cancer glioblastoma (GBM) grade 4 in May 2012. After doctors gave her a prognosis of two months, she participated in Standard of Care which consisted of radiation and chemotherapy and took part in a clinical trial at Moffitt Hospital in Tampa, FL. 

Lori has produced a testimonial documentary, travels the US speaking about hope and inspiration, and created a blog where she talks about how her Christian beliefs have helped her not only deal with her cancer but also inspire others who either have this deadly disease or have a loved one who is dealing with cancer.

Lori Luedtke

When a family member or friend is diagnosed with a terminal illness, all attention is focused on the one that is sick. If there are children in that family then problems could arise, as children also need love and attention but may not get as much because of the demands of caregiving. When I was diagnosed with terminal brain cancer, I was fortunate enough to have a great deal of friends and family—but all their concerns still lay with me.

My son developed issues because he had no one to talk to. He was concerned with his mother possibly dying and not knowing what would happen to him. He turned to his friends at school but no one wanted to listen to him. So, he looked for others to talk to and ended up with “friends” that encouraged him to kill the pain with illegal substances.

If I had been aware of what was happening, I would have done something about it. Since I was unaware at the time, it has been a long recovery time for both of us. I had lost my brother, and my son his uncle, due to cancer a few years before I was diagnosed. My son was convinced that I would have the same outcome.

I attempted to assure him that I would be honest with him through the whole process and asked if he would like to go to my doctor's appointments with me. He became depressed and isolated and began making poor decisions. He said, “I felt abandoned by my family. No one was there to ask about my day or listen to me”. Unfortunately, no one recognized any of this at the time.

I suggest you have one friend or family member that is solely focused on your children. Have family meetings which include the children; provide activities to help distract them; and reach out to the families of their friends and ask them to include your children in activities. Reach out to the school or teachers and let them know what is transpiring so they can look for behavioral changes. 

It is so hard for the one who is ill to do and plan all of this because they are literally fighting for their life. My cancer shaped his past but did not define it. My son says, “As I have gotten older, I have realized sometimes it’s ok not to be ok”. That’s a good lesson for all of us.

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When we get cancer all the attention is focused on us, but the demands of caregiving can leave behind family and loved ones that need attention as well. Especially our children.

Caring For Those Left Behind During Treatment For Cancer

Today, I wanted to write about celebrations. 

When you are struggling with a terminal disease, celebration is probably not a word you think about. However, when you are battling such a grueling disease, you have to celebrate the mini victories. It helps you to get to the finish line. Early in my diagnosis I was prescribed a giant pill called Kepra. It was for seizures. It was very difficult to swallow, and my family really struggled to get me to take my Kepra pill every day. There were negotiations, begging and even cookies. 

After several weeks of taking this medicine at home, I received a phone call from my neuro oncologist office that said they didn’t see any signs of seizures so I didn’t need to continue to take the Kepra. Hallelujah!! This was a reason for a huge celebration. For some reason I decided this was “parade worthy”!!  

I texted my family and told them to meet in the Living Room at 4:00. I proceeded to get out of my bed, walked into the living room and paraded around my coffee table saying, “no more kepra”. My family looked at me like I was crazy. For starters I haven’t even been out of my bed on my own yet. I actually think they thought I made it up, because everyone knew I did not like to take that big ole horse pill.

This little parade was just the beginning of the mini-celebrations I had throughout my journey.

I had no more radiation parade with my Aunt Jan.

A no more chemo parade with a few dozen people around my neighborhood.

And a no more shots parade around the CRU at Moffitt hospital with my nurse.

My husband and I went to Siesta Key and paraded for my 3-year anniversary of diagnosis with our friends Richard and Claire Beckley.

I think parades are fun, and I will continue to have them for each and every mini victory. To celebrate the wins along the way as the journey continues.

It's important to celebrate the mini-victories along the cancer journey, whether it's with your favorite food or a small parade.

Celebrating The Mini-Victories Along The Way

Looking back on my life I began to think about how God prepared me for my battle with cancer. Why did I feel this desire to train…. first for a bicycle challenge and then for a half marathon? I grew up a popular girl - not an athlete. I was the one who cheered on athletes.

On Memorial Day, 2006, my brother was diagnosed with terminal melanoma. I made several trips to see him in Texas but always came away frustrated, feeling there was nothing I could do for him. In August 2006 I was brainstorming with some friends and they suggested we sign up for the 40-mile Lance Armstrong Livestrong challenge, which was to take place in the hills of Austin, Texas in October 2006. We were determined to raise money and awareness for this terrible disease that had afflicted my brother. My friends were extreme athletes. I, on the other hand, was not athletic at all. I didn't even own a bike.

The bike is a story in itself. I ordered a bike online thinking that all bikes are created equal (which affirms the fact that I knew nothing about cycling). When it was time to purchase my ticket to Austin, I found I needed a ticket and a carrier for my bike. This would have doubled the price of my ticket and I didn't want that. I ended up borrowing a bike from a bike store in my hometown - and that is when I really learned about carbon fiber bikes. I had been training on an extremely heavy bike, but this bike I could lift with two fingers. It made me lighter, which in turn made me faster. Was this a God thing? Was I to train on a bike that would make me stronger, so that when it came time for the race I could go further and faster?

I trained and trained (no less than an Olympic athlete might train). I was obsessed with my training. I even joined a cycling group called the Seminole Cyclists. When I felt I couldn't go further, there was a need in me that pushed me onward. I had a picture of my brother on the handle bars of my bike, and I pedaled harder and went further. We created a fundraising website and began raising money while I continued to train. In October 2006, my friends and I competed in the challenge and I came in 8th in my age division. I had dinner with Lance Armstrong in recognition of our effort to raise money and my effort in the ride.

The saddest part is that my brother died in November, just 6 months after his diagnosis.

After that, it was put in my heart the desire to run a half marathon (again, me never having been an athlete). My first thought was "How in the world am I to run a half marathon?" So, I read a lot, and it taught me to take a look at how far I had come and how I should celebrate the victories I had attained. That is just what I did in my cancer journey.

Friends would often ask me why I was doing all this running and biking. I had no answer for them. I was only thinking it was a way to hang out with my friends (the athletes). Now, looking back, I know that God was preparing me for the biggest race of my life: my cancer journey! I was able to see what needed to be done, the same way I had prepared for a race and I could see the finish line, little by little.

Sometimes you just need to look at how God has prepared you for the trial that you are facing. Then, as the scripture says, you need to use that strength and power He has given you so that you are filled with great endurance and patience.

Colossians 1:11: Being strengthened with all power according to his glorious might so that you may have great endurance and patience.

Friends would often ask me why I was doing all this running and biking. I had no answer for them. Now, looking back, I know that God was preparing me for the biggest race of my life: my cancer journey! 

Being Prepared for Cancer

This is a hard blog to write, but one that I think is important. I am going to start by telling you some advice that my grandfather told me when I was in middle school. He said, “You have to think of your life as a theater. You have your front row, the people seated in the theater and the people waiting to get in. The point is, you decide where they sit.” 

My grandfather was the director of the community theater at that time, and I was mad at someone that “stole” my boyfriend (or something trivial like that). As I have gone through this cancer journey I have reflected on that advice numerous times. People don’t know what to say or do. I’m not sure it is intentional because they just don’t know. I can speak out on my firsthand experiences and offer some advice.

I don’t care if it is a text, e-mail or a Hallmark card, just say something.

It has been more than five years and there are “friends seated in my theater” that I still haven’t heard from — well, I thought they were friends.

It is hard to reach out and ask someone to do something for you when you are used to being so independent. But the last thing you want to hear is, “I would rather not, I have happy hour that starts at 5:00.” That person is not in the front row anymore.

I also had a couple friends that set up a “Meal Train” where they bring meals to my family. That was wonderful.

I had a point person — a friend that would listen to me especially after I had just seen a doctor or had a test – and she would send out ONE email blast informing loved ones of my health status. This was helpful to me as it is exhausting to repeat yourself over and over.

I had a friend that sent me one card every week. It was something to look forward to.

I had a friend that set up a community “TEAM LORI” Facebook page where people could post positive and encouraging thoughts, and I could also post updates.

I had a friend that would call me on her way home from work almost every day. She would ask what I was doing, say she was stopping for a smoothie and headed my way. She knew how to get in and she knew I was in bed watching TV. She would bring me a smoothie and just crawl into bed with me and start watching whatever I was watching. She was present. She was there to listen. She was and is a devoted friend.

I had an amazing husband that always had something planned so I would have something to look forward to.

 when someone you know has received a cancer diagnosis:

When you offer to help, be specific. Don’t ask, “What can I do for you?” Instead say, “I would like to bring you and your family dinner tonight. Would 6:30 drop-off be OK?” or, “I am on my way to the grocery store can I pick up something for you?”

“We are taking our kids to the park on Saturday. Can I pick up ______ (child/dog, etc.) and bring ____ with us?”

“I am available all next week if I can take you to any appointments or just come sit with you if you would like company.” Be willing to accompany the patient to doctors’ appointments. Be a second set of ears if the person asks you to come along. Take notes.

Help organize paperwork. Patients with cancer must contend with piles of insurance forms, receipts, test results and appointment reminders.

Choose positive, hopeful words but don't give false hope or talk about another person’s cancer outcome. Remember, each person is different and hearing other people's stories may scare your friend or loved one.

"Where do we start? We're in this together."

 Your friend or loved one has a lot to think about and one of the best gifts you can give is to be a sounding board. Don't focus on your own worries and sadness about your friend or loved one's diagnosis. The patient or caregiver shouldn't feel like he or she has to take care of you. Instead, offer strength, humor and practical help.

Listen with interest and make eye contact.

 We all know there is a difference between listening and 

and people can tell the difference. So, the next time you have a conversation with someone, make it a point to 

 to what they have to say. By doing this — listening with interest and making eye contact – you are letting the other person know that you value their presence and ideas.

Hugs not only help build stronger bonds with the people you see every day; they can have healing power. Hugs can be a non-verbal way of saying, “You matter!”

 The best way to do this is to say those four simple words: “You matter to me.” However, if you are someone who finds it more difficult to verbally express how you feel, it’s important to know that there are many other ways you can still show someone your appreciation.

 When you’re around someone important to you, put your phone down! One of the easiest ways to show someone that they don’t matter is by spending the entire time you are with them on your phone.

 Often, the best thing is to offer hugs, show up and say, "I love you."

Before visiting, giving advice and asking questions, ask if it is welcome. Be sure to make it clear that saying no is perfectly okay.

Don’t be afraid to make plans for the future. This gives your friend something to look forward to, especially with the sometimes long and drawn-out cancer treatments.

Make flexible plans that are easy to change in case something comes up or your friend needs to cancel or reschedule.

Be humorous and fun when appropriate and when needed. A light conversation or a funny story can make a friend’s day.

Do not ignore uncomfortable topics or feelings.

Make time for a check-in phone call. Let your friend know when you will be calling. Also, let your friend know that it is okay 

 Your friend will give you cues if they are tired or you have over-stayed your welcome. Visits should generally last thirty to forty-five minutes; patients with cancer are often fatigued and need rest.

If you commit to help, it is important that you follow through on your promise.

Try not to let your friend’s condition get in the way of your friendship. As much as possible, treat him or her the same way you always have.

Ask about interests, hobbies and other topics unrelated to cancer. People going through treatment sometimes need a break from thinking and talking about the disease.

Read his or her blog, web page, or group emails.

 Oftentimes, people living with cancer blog about their experience to share with friends and family.

Remember, a family member who is responsible for the care of the person with cancer can become isolated and stressed. If you know that person, you may want to check in to see how they are doing, too. They may also be able to share ideas about how you can best help the person with cancer.

My best advice is to SAY SOMETHING; let them know you care. E-mails, texts or cards are fine. Just SAY SOMETHING, show up, be present and listen. Respond from your heart. You can always say, “I’m not sure what to say, but I can sure listen and I want you to know I am here for you.”

As I have gone through this cancer journey, I have realized that people don’t know what to say or do when a loved one has cancer. I can speak out on my firsthand experiences and offer some advice.

Lori Luedtke

Caring For Those Left Behind During Treatment For Cancer

Celebrating The Mini-Victories Along The Way

Being Prepared for Cancer

Say Something: What to Do and Say When a Loved One Has Cancer

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