Joels Sarcoma Journey | joelsmithcoach.com

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My Sarcoma Journey

Joel Smith

Week 8 Update

10 THINGS TO NEVER SAY TO SOMEONE WITH CANCER
Some of these may seem very natural to say, but be interpreted differently than intended…
They could trip you up if you don’t have a heads-up.

1. Don't say: "I’m so worried about you."
• Don’t be the driver behind the person's emotional roller-coaster.
• Remember, the person who has cancer has the problem.
• They don’t need to worry about how you feel.
What to say instead:
• "I feel terrible you're going through this. Feel free to cry with me, to talk, or not to talk. I'll let you take the lead..."

2. Don't say: "I’m so glad you don't have (another form of) cancer."
• No matter what type of cancer you have, or the stage, it's life-altering — even if it's not immediately life threatening.
• Don’t make them feel like they dodged a bullet.
• "No one needs to be reminded that things can always be worse.
What to say instead:
• "Tell me about your (type) of cancer. I'd like to know more about what you're going through."

3. Don't say: "You're so strong." Or “You are a warrior”. Or anything with the word “Beast” in it.
• First, it could be that they are not strong.
• This may help some feel more in control of their experience, but it can also make some feel like they're weak if they're having a bad day."
• When people are expecting you to show strength, it can make you feel afraid to show any hint of vulnerability.
What to say instead:
• "I admire how you're handling this with such grace."
• or, “would you allow me to go through this with you?”

4. Don't say: "Are you a smoker?"
• It is true that some behaviors increase the chances of cancer, but do we really need to point that out?
• They are trying to make sense of “why” they got cancer.
• ..and often blame themselves.
What to say instead:
• "You don't deserve this," or "I'm so sorry this is happening to you."

5. Don't say: "My friend had the same cancer that you have. Let me tell you all about it."
• Cancer patients don’t always want to know stories about other people’s experiences. Especially those that don’t end well.

What to say instead:
• "I think my friend had the same cancer. I know everyone's cancer is different, but if you like, I can put you in touch with her?"

6. Don't say: "If there's anything I can do, just let me know."
• It sounds kind, but here's why it's not so great:

This gives the person the homework of figuring out what you can do to help them, then they have the burden of having to ask you, so you don’t feel bad.

Or, It also could come across as a boilerplate response that makes the person with cancer feel like you’ve “done your duty.”

What to say instead:
• Be specific, with as few decision points as possible.
For example:
• "I'm going to make a meal for your family next week.
• What day would be good?
• Let me know if there's anything you don't eat."
• Or, do you need a ride to any appointments that I can help you with?...
• I have Mondays and Wednesdays available.

7. Don't say: "I know how you feel."
• People will say this to try and express their empathy. But the truth of the matter is, you don't know how he feels.
• …Even if you have gone through it yourself.
What to say instead:
• "I can't imagine how you feel."
• Your openness may encourage your friend to tell you exactly how he feels.

8. Don't say: "I've heard about a new treatment for that…"
• Don’t try to be their doctor.
• Don’t educate them on anything… They will not be impressed by anything you know about their cancer.
• Their doctors will know way more than you.

What to say instead:
• Ask questions, like "Are you feeling good about your treatment?
• What will your treatment look like?
• Are there any new medications or techniques that could be helpful?"

9. Don't say: Nothing.
• Nobody would rather have a friend NOT reach out at all than say the wrong thing.
• You may not know what to say, but ignoring someone can make them feel isolated or alone.
• You're much better off saying something.
What to say instead:
• Admit that you are not sure what to say, but you're there for them…
• Or Ask them how you may be able to support them?
• Or at the very least, that you are thinking and praying for them.

Joke: What did the mountain say to the leg? You should have paid more attention to me when I was a lump.

10. Don’t Say: Why didn’t you get that lump on your leg checked out sooner?
• Because I’m an idiot…
Thanks for pointing that out, Einstein
Or, you might ask:
Didn’t you know that could be cancerous?
• Yes, but I love to live dangerously on the edge.
• I also like to smack my head against the wall… because it feels good when I stop.

What to say instead:
• Anything else.

Week 7 Update

Jan 27- Feb 5
The Power of Kindness:

20 days down and 5 to go.

Have you ever thought about how many potential interactions we have every day that seem to be insignificant? Or how much of your day relies on the service of others?

From the barista making your coffee to the cashier ringing up your groceries, or maybe it’s the radiation tech that’s helping you beat cancer — these are the people who keep our world running.

Peyton, MaKennah and Emma

This week I have been thinking about the power of kindness—how a simple smile, a heartfelt "thank you," or a few kind words can completely change someone's day.

I wonder sometimes how many of these opportunities I miss because I am looking at my phone or distracted. Or how often I am just focused on me. It’s easy to overlook people, especially in a culture that encourages us to put on blinders and mind our own business.

There’s a cultural trend of isolationism, covid didn’t help.
Many people are surrounded by others, yet they still feel alone. But how often do we stop and truly appreciate people, or take the time to say a kind word of encouragement? Or even learn their name.

I have made a concerted effort to learn people’s names.
Culture: name barrier: Until you learn someone’s name, they can seem like just another stranger.

Humans are built for social interaction (even introverts).
There is a direct correlation between positive social interaction and depression.

Negative feedback loop that perpetuates the problem.
Have you ever had a bad day, and then someone unexpectedly says something kind?
It’s like a breath of fresh air.

We don’t know what kind of burdens others may be carrying behind their smiles (or frowns). Maybe that cashier just got bad news. Maybe they are struggling with family issues, or trying to figure out how to pay rent this month.

The Bible tells us in Proverbs 15:23,
"A person finds joy in giving an apt reply— and how good is a timely word!"

That’s the power of a timely word. And the best part?
…We all have the ability to be that person for someone, every day.

Story: Deanna-

Philemon 1:7 reminds us:
"Your love has given me great joy and encouragement, because you, brother, have refreshed the hearts of the Lord’s people."
Romans 15:13 says:
"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit."

What if we lived in a way that refreshed others every day?

Showing kindness in everyday life can be as simple as
• "Thank you for what you do!"
• “I see how hard you’re working, and I appreciate it,”
• Or, “you know, I come here because of you”

It may be just enough to get people through their day.

Week 6 Update

Jan 22-28

The importance of Laughter to our health.

According to the Mayo Clinic. Research has found there are both short and long-term benefits to a great sense of humor: Laughter can increase oxygen to the heart, lungs and muscles, increase the endorphins that are released by your brain, improve your mood and reduce physical pain.
Humor won’t make a diagnosis go away, but it can be a stress-buster when used appropriately.

I know it has played a part in helping me stare cancer in the face. It’s like saying to cancer “You can cause me pain, you can disrupt my life and even shorten it, but you can’t break my spirit. You can’t rob me of my joy”.
Laughter can also be like a release valve. It can give everyone in the room a sense of relief.

For me, it says to the people around me “I’m okay, you don’t have to worry about walking on eggshells. You have permission to be normal, because normal is what I need”.

Jesus was sitting in the hospital waiting room next to a guy with a sarcoma on his leg. "Hey, you want me to touch that and make it go away?" The guy says “Ah… no thank you”. A few minutes later, Jesus looks at him again and said "If you want, I could cast-out that cancer, and send it into a herd of pigs" “No, that’s not necessary. I've got a doctor” he replied. After a while, Jesus again speaks up "I could pray over that ...." One guy on the other side of the room says to his wife "who does that guy think he is, Jesus Christ?" His wife says "No, he is Jesus Christ, he thinks he's a Doctor."
Alright on a serious note: Not everyone with a serious illness will find your humor helpful, or funny.

We’re not all at the same level of emotional maturity or place of acceptance. It takes time to work through the stages of grief and some people can be sensitive until they work through it. And some may never get there.

We need to be mindful of the person and the situation before we go all Robin Williams on someone.

How did the sarcoma become a successful business coach? By charging an arm and a leg.

Week 5 Update

Jan 12-21
Hello everyone, I have just started my third week of radiation treatment…
All is well and everything is on target.
I recently did an interview with an organization called The Patient Story.
It’s a site where people can go to find hope, guidance, and learn about cutting-edge cancer treatments, and connect with people who know what they're experiencing.
I will provide a link once the story is published.

In other family news:
• As I reported a couple of weeks ago, my mother was in the ICU in Bettendorf with problems breathing and pneumonia.
Her heart is weak and not likely to improve much.
She was moved to another care facility (Lutheran Living) for physical therapy to gain her strength back.
Yesterday she was admitted again to the ER for shortness of breath. She has RSV and was put on oxygen. She is returning to Lutheran Living until she is healthy.

• My wife is the primary caretaker for her mother Alma who lives in our home. Alma was diagnosed with cancer on the same day I was. I hadn’t talked about her as in these updates. She is a bit more private, and I wasn’t sure how much she would want me to share.
She is a 15-year survivor of breast cancer. But unfortunately, it has returned in several places in her bones… Spine and her hip.
She started radiation this week and will likely require other ongoing treatments. Good news…

Jen has been a trouper, stepping up to get her to appointments and being a great support for both of us.
Between the 3 of us, there are many appointments every week to juggle.

You would think that our house would be filled with anxiety and sadness.
.. for the most part, is pretty upbeat, and positive in the midst of what is going on.
We’ve all had to adjust to a new reality. We are trying to hit it head-on by confronting the uncertainty with hope and faith.
We have been talking about cancer and death more openly. And it has helped us become more at peace with it.

This past week I have been chewing on a question that has become my theme for the week…

Question: Why do most people feel awkward or uncomfortable talking about death?
1. Emotional Pain
2. Fear of the Unknown: Most people have a great deal of uncertainty…
3. Fear of making others uncomfortable.

• Most people struggle to think about not only death but the future in general.
• We can get a false sense of security, thinking we have plenty of time…
• We tend to waste our time when we think there is plenty of it. (Parkinsons Law).
• I have had periods in my life when I felt like I was asleep at the wheel, just passing time to get through it, or feeling like I’m in a frozen state, existing but not really going anywhere.

I have had a bit of an awakening lately. I have been forced to think about my own mortality and the time I have left on this earth.
I’ve been asking myself, what I want the remaining years of my life to be about.
I don’t have all the answers to that question, but I realize I need to focus more on making every day count and appreciate each day as an opportunity.
1. I am going to work hard to focus less on trivial things, and not worrying about things I can’t control, and more on what I can.
2. I need to keep myself from getting caught up in cultural wars and falling for the bait that tells me what I need to be against. Collaboration is much more effective than an adversarial approach.
3. I ‘m going to avoid activities that lead to entertainment addiction. Entertainment can put us in a trance, into a buffer zone of mindless activity.

Eph 5:14-16 This is why it is said: "Wake up, sleeper, rise from the dead, and Christ will shine on you."
Be very careful, then, how you live—not as unwise but as wise, making the most of every opportunity, because the days are evil

Week 4 Update

Jan 6-11

Thankfulness

(1Th 1:2) We always thank God for all of you and continually mention you in our prayers.
(Php 1:3) I thank my God every time I remember you.
(1Th 1:2) We always thank God for all of you and continually mention you in our prayers.

(1Th 5:16-18) Rejoice always, pray continually, give thanks in all circumstances; for this is God's will for you in Christ Jesus.
(1Pe 4:12-13) Dear friends, do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you. But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.

Week 3 Update

Dec 26 - Jan 6
Thinking About Truth:
Php 4:8 Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

What Is Glory?
Joh 7:18 Whoever speaks on their own does so to gain personal glory, but he who seeks the glory of the one who sent him is a man of truth; there is nothing false about him.

Suffering:
Joh 11:4 When he heard this, Jesus said, "This sickness will not end in death. No, it is for God's glory so that God's Son may be glorified through it.”

Joh 11:40 Then Jesus said, "Did I not tell you that if you believe, you will see the glory of God?"

Week 2 Update

Dec 21-28

Week 1 Update

Dec 13- 20

How I found my Doctor

Healthy Eyes

I created this training promo a couple years ago. I didn't know that I would have cancer, but it is very relevant.

Visit https://www.joelsmithcoach.com/ for more videos

Matthew 6:22-23
New International Version

22 “The eye is the lamp of the body. If your eyes are healthy,[a] your whole body will be full of light. 23 But if your eyes are unhealthy,[b] your whole body will be full of darkness. If then the light within you is darkness, how great is that darkness!

Dr. Ben Miller

Benjamin J Miller, MD, MS, is an orthopedic surgeon who specializes in cancer care and limb salvage surgery for sarcoma, metastatic bone disease, and benign bone and soft tissue tumors. He is an expert at treating these conditions through multidisciplinary tumor board, prosthetic and biologic reconstructive options, and a focus on individual goals of function and quality of life.

His research focuses on sarcoma registries, collaborative clinical research, wound healing complications, chondrosarcoma, osteosarcoma, Ewing's sarcoma, and outcome analysis in musculoskeletal tumors. He is currently leader of the Sarcoma Multidisciplinary Oncology Group. He has served as president of the Musculoskeletal Tumor Society (MSTS) and chair of the Musculoskeletal Tumor Registry.

Miller received his medical degree from the University of Iowa. He completed his orthopedic surgery residency at Rush-Presbyterian-St. Luke’s Medical Center in Chicago, Illinois and his orthopedic oncology fellowship at the University of Florida in Gainesville, Florida.

New

My Sarcoma Journey

Joel Smith

In December 2024 I was diagnosed with a cancerous tumor (myxofibrosarcoma). It is a lump on my left shin just under the kneecap.

This is my journey...

Dec 19

After having an ultrasound followed by an MRI, it was determined by Dr. Ben Miller that the tumor on my leg was highly likely to have a cancerous tumor called sarcoma. A scheduled biopsy would soon confirm this. We knew the possibilities were grade 1, 2, or 3. I have a CT scan scheduled for tomorrow. The uncertainty was weighing on me and my family.

Here is a simple explanation…

Grade 1 would be the easiest, a localized cancer with limited growth. They would simply cut it out and I would move on with limited treatment and monitoring.

Grade 2 would be a localized cancer that is growing at a moderate level and speed. This grade would require radiation followed by removal then ongoing monitoring. It would have a more likely chance of recurrence.

Grade 3 would be a cancer with a faster level of growth, possibly metastasizing or spreading throughout. More likely in my lymph nodes or lungs. This would require more aggressive treatment with radiation, immunotherapy, or even possibly chemo. This grade has a much higher chance of recurrence and a significantly lower survival rate. This prognosis was the big scary one that kept me from sleeping.

Dec 21

Friday was a turning point for my wife and me. When we got the CT results back our level of relief was instant. It revealed that my lungs and upper body were “normal” with no signs of spreading. It’s amazing how welcoming a diagnosis of Grade 2 can feel. What a relief! Now I know my marching orders and can move forward with certainty of what I can control.

I believe our level of resilience can be much greater if we can just see our perspective from a higher level. Life is a gift from God and nothing that is owed to us. We should appreciate each day and each person in our lives. When we do, our sense of appreciation will outshine our sense of entitlement. Our health is a privilege, not a right. As we become more appreciative, we become more resilient. Then, we become more equipped for bigger and greater future challenges to conquer.

Dec 26

Here are a few things I have learned (so far) through my limited experience with cancer:

Uncertainty is Frightening - When the prognosis is unknown or uncertain, the level of stress skyrockets even when logically we know better. I have thought of myself as a person with high emotional intelligence, however, I couldn’t help but entertain the worst scenario. Intellectually I knew not to count my chickens before they hatch, but my mind went there anyway. I now see how I was overreacting, but I didn't know how NOT to. I am learning that these feelings don’t make me weak. It just reveals that I am. The Bible says that we become stronger as we realize we are weak.

I Don’t Know How to Feel - I have never been diagnosed with anything this potentially life-threatening before and so there was no way to know how to feel in this situation. How afraid or brave am I supposed to be? Should I tell others? When and how? Am I being dramatic by telling others? Do I really want to make others uncomfortable by telling them? I think life experiences count for something and until we learn them, we will struggle when faced with them like everyone else. No shortcuts.

I Don’t Know How to Relate - It’s more difficult to empathize with people whom you have not had similar experiences with, even when you try. I find myself thinking more about others who have gone through a battle with cancer. I can say my level of empathy is growing slowly but surely. I know God is working on me and helping me with my level of compassion. I have a long way to go.

I Don’t Know My Own Poverty – My friend Brooks gave a great sermon Sunday about this. I am learning how my pride can keep me from asking for help when I need it. I don’t want to be seen by others as weak and in need, but that is what I am in so many ways. My sense of self-dependence is a prideful stumbling block to be removed. Life is a struggle, and we need people.

I really appreciate all the prayers and support. I am blessed with great friends, family and doctors around me. I will try to keep sending updates.

Check out the videos for the rest of the story...