Stage IV Cancer Journey Guide: I Was Kept Alive to Live

Kept alive to truly live.

The Day Everything Divided Into Before and After

There is a moment many cancer survivors remember clearly. For me, it started with a phone call. A doctor had found a mass. After that call, my life split into two parts: before and after.

I had already had a hysterectomy for what everyone believed were benign fibroids. Life had returned to normal, or so I thought. Then an unusual pain told me something was not right. An MRI showed multiple masses. There was a six-hour drive to a specialist, weeks of waiting, and finally a name for what was happening inside my body: Stage IV uterine leiomyosarcoma, a rare and aggressive cancer.

If you are here, you or someone you love may be facing your own version of that phone call. Maybe you are waiting for test results. Maybe you just heard a word you cannot pronounce and spent the night searching it online, scared by every statistic you found. Maybe you are in the middle of chemotherapy, or years past treatment and still feeling the fear before every scan.

Wherever you are, I want you to know this: you are not alone, and your story is not over.

This guide is the starting point for my entire Cancer Journey collection on Surviving Life Lessons. It walks through my story from the first symptoms to life years after diagnosis, and it connects you to every post so you can find the help you need for the stage you are in right now.

This Stage IV cancer journey guide shares my experience from diagnosis and treatment to survivorship, including the lessons I learned, questions worth asking, and ways to keep living through uncertainty. Explore each stage at your own pace and find the guidance most relevant to where you are now.

Why I Share My Cancer Story

When I was diagnosed, I searched for real stories from people who had walked this road. Most of what I found was frightening statistics or medical information that was hard to understand. I wanted someone to tell me what it actually felt like, what to ask, what to prepare for, and how to keep living while everything felt out of control.

That is why I write. My cancer journey taught me things I wish I had known sooner: about fibroids and morcellation, about speaking up when a doctor is not listening, about tumor testing and maintenance treatment, about the financial cost no one warns you about, and about the emotional weight of it all. If one post helps someone ask a better question, prepare a little better, or feel a little less alone, then sharing it is worth it.

I am not a doctor, and nothing here replaces medical care. But I am a patient who learned a lot the hard way, and I believe our stories can help each other.

Breaking an Overwhelming Journey Into Smaller Pieces

A cancer diagnosis is one of the biggest problems a person can face. It touches your body, your emotions, your family, your work, your finances, and your future all at once. Trying to face all of it at the same time can feel impossible.

The heart of Surviving Life Lessons is breaking big problems into small, manageable steps. That is how I got through cancer: one appointment, one test, one treatment, one day at a time. It is also why this collection is organized into stages. You do not need to read everything. Start with the part of the journey you are living right now.

Here are a few small steps that helped me, written as simple goals:

• "Before my next appointment, I will write down three questions to ask my doctor."

• "This week, I will ask one person to help with one specific task."

• "Today, I will do one thing that brings me joy, even if it is small."

• "This month, I will organize my medical records in one folder."

When something feels too big, make it smaller. When a time frame feels too short, give yourself more time. Cancer has its own pace, and you are allowed to move through it at yours.

How My Stage IV Cancer Journey Is Organized

My Cancer Journey collection follows the path many patients walk. Each part has its own guide that links to every post in that stage.

1. Before the Diagnosis: Fibroids, Symptoms, and Waiting

My cancer was first treated as a benign fibroid. These posts cover what I wish I had known about fibroids, uterine morcellation, and rare uterine cancers, plus what it is like to wait for specialists and answers. They also cover the moment I asked one more question that changed everything.

2. Facing a Stage IV Diagnosis

Hearing "Stage IV" is terrifying. These posts share the day my cancer finally had a name, what I learned about uterine leiomyosarcoma, how I told my children and family, and how I found hope, faith, and peace when the future felt uncertain. They also include practical posts on planning ahead and getting your affairs in order.

3. Preparing for Surgery and Treatment

Before surgery, I prepared my home, kitchen, finances, bills, vaccines, and family. I also planned fun. It was during COVID, and I went hiking, kayaking, and fishing, and a friend came so we could visit the waterfalls. These posts share how I prepared practically and emotionally, including the surgery I barely remember and the severe anemia that followed.

4. Getting Through Chemotherapy

Chemotherapy brought fear, hair loss, infusion reactions, exhaustion, and pneumonia that was found almost by accident. It also brought hats from coworkers that helped me face the mirror. These posts share what I wish I had known before my first infusion and what it was like to keep working through treatment.

5. Self-Advocacy, Testing, and Treatment Decisions

Some of the most important moments in my journey came from asking questions. These posts cover finding a doctor who would listen, appealing insurance denials, tumor and genetic testing, Signatera blood testing, maintenance treatment decisions, and managing the unpaid administrative job that cancer gives you.

6. The Financial Cost of Cancer

Cancer is expensive in ways no one prepares you for. These posts cover medical bills, financial toxicity, my HSA, short-term disability, and what surviving cancer really cost me.

7. The Emotional Side of Cancer

Cancer affects more than the body. These posts explore stress, scanxiety, survivor's guilt, feeling like a burden, grieving the able-bodied life I had before, learning to trust my body again, and protecting my peace with boundaries.

8. Caregivers, Family, and the Cancer Community

No one should carry cancer alone. These posts share what I learned about caregiving, accepting help, the emotional support dog that helped heal our family, and the kinship that forms between cancer survivors.

9. Life After Treatment: NED, Survivorship, and Living Fully

No evidence of disease does not mean the journey is over. These posts cover survivorship, living as a chronic illness patient, traveling after cancer, reaching five years, and the choices I made to live fully, like buying a house, throwing a purple survival party, and finally publishing my poetry.

What I Learned About Speaking Up

If I could tell every patient one thing, it would be this: speak up. Ask one more question. Mention the symptom that seems small. Ask what a test result means. Ask whether there are other options, other tests, or other specialists.

Asking questions led me to the right diagnosis, the right doctors, tumor testing, and maintenance treatment that became an important part of my survival. When a doctor would not listen, I found one who would. When insurance tried to decide my care, I appealed. When my body told me something was wrong, I listened.

Self-advocacy is not being difficult. It is being an active part of your own care.

Living in the Middle of the Crazy

One of the most important lessons cancer taught me is that you cannot wait for life to calm down before you start living. Crazy will always happen. Treatment, appointments, side effects, bills, and fear will keep coming. If you wait for all of it to disappear before you enjoy your life, you may never enjoy it at all.

So I planned fun in the middle of the hard. Before surgery, during COVID, I went hiking, kayaking, and fishing. My friend came, and we went to see the waterfalls. I celebrated a birthday between my surgeries, and now I celebrate my cancer anniversary on my birthday. Each birthday is a reminder of what I went through, and that I am still alive. I am still breathing.

Finding joy during cancer does not mean pretending everything is fine. It means choosing to make memories even when life is hard. Those moments gave me strength, connection, and something to hold on to.

Cancer Changes Your Health, Your Priorities, and Your Life

Surviving cancer does not mean everything goes back to the way it was. Cancer turned me into a chronic illness patient. I grieved the body I had before. I still watch my iron levels, still feel scanxiety, and still make decisions about maintenance treatment with my care team.

Cancer also changed my priorities. I stopped waiting for someday. I bought a house a year after my diagnosis because I chose to build a future. I published my first poetry book because I realized the poems I had saved for years could disappear if I never shared them. I stopped giving everyone access to my peace.

For Caregivers and Loved Ones

If you are reading this because someone you love has cancer, thank you for being here. Caregivers carry a heavy load, often quietly. You may be driving to appointments, managing medications, cooking, working, and trying to stay strong all at the same time.

My family, friends, coworkers, and church helped carry me through treatment, and I learned that cancer caregiving is too much for one person. Share the load. Ask for help with specific tasks.

Take breaks without guilt. And remember that the person with cancer often needs your presence more than your words. Sitting with them, laughing with them, and planning something fun together can mean more than you know.

A Note About Medical Information

The posts in this collection share my personal experience and what I learned along the way. Every cancer, every patient, and every treatment plan is different. Please talk with your oncology team before making decisions about testing, medications, or treatment. Bring your questions to your appointments, and if something does not feel right, keep asking.

Frequently Asked Questions

What is uterine leiomyosarcoma?

Uterine leiomyosarcoma is a rare cancer that starts in the smooth muscle of the uterus. It can sometimes be mistaken for a benign fibroid before surgery.

Where should I start in this collection?

Start with the stage you are living right now. If you are waiting for answers, begin with Before the Diagnosis. If you were just diagnosed, begin with Facing a Stage IV Diagnosis. If you are done with treatment, begin with Life After Treatment.

Can you still enjoy life during cancer treatment?

Yes. It may look different, and it may take planning, but small moments of joy, connection, and adventure can make a hard season more bearable and remind you what you are fighting for.

How can I support someone with cancer?

Offer specific help, listen without trying to fix everything, remember appointments and anniversaries, and keep showing up long after the diagnosis.

Journal Prompts for Your Cancer Journey

• What part of my journey feels hardest right now?

• What question do I need to ask at my next appointment?

• Who can I ask for help this week, and with what?

• What is one fun thing I can plan, even in the middle of treatment?

• What does living fully mean to me today?

I Was Kept Alive, So Now I Need to Live

Cancer changed my life, but it did not take my life. Every birthday reminds me of what I went through and that I am still here, still breathing. I was kept alive, so now I need to live. Wherever you are on your journey, I hope you find information, encouragement, and people who understand. Take it one step at a time, ask your questions, find moments of joy in the middle of the crazy, and remember that your story still matters.

Posts in This Series

Every post in my Cancer Journey collection, grouped by stage. Each stage has its own guide, linked under the stage name. Start with the stage you are living right now.

1. Before the Diagnosis: Fibroids, Symptoms, and Waiting

Stage guide: Fibroid or Cancer? A Guide to the Signs I Almost Missed

• Life After a Hysterectomy for Fibroids: When Normal Life Returned But Something is Off

• Can a Fibroid Actually Be Uterine Leiomyosarcoma? What Patients Need to Know

• Fibroids and Morcellation: What I Wish I Had Known Before Surgery

• What Is Uterine Morcellation? What I Wish I Had Known Before My Hysterectomy

• Fibroid Morcellation: What Patients Need to Know Before Surgery

• When My Doctor Found a Mass: The Phone Call That Changed Everything

• The Six-Hour Drive That Changed My Life: Finding Faith Before I Had Answers

• When Your Doctor Refers You to a Specialist

• Hurry Up and Wait: Waiting for a Cancer Specialist After an Abnormal MRI

• How to Cope When You're Waiting for Test Results, Appointments, or a Diagnosis

• I Asked One More Question and It Changed My Cancer Journey

2. Facing a Stage IV Diagnosis

Stage guide: Stage IV Cancer Diagnosis Guide: Facing the Unknown

• The Day My Cancer Finally Had a Name

• Understanding Uterine Leiomyosarcoma: What I Learned After My Diagnosis

• My Stage IV Uterine Leiomyosarcoma Diagnosis: One Step at a Time

• Accepting a Stage IV Cancer Diagnosis: Telling My Children and Facing the Unknown

• Finding Hope After a Frightening Cancer Diagnosis

• Finding Peace During Cancer Uncertainty: What I Can Control

• Telling Family and Friends You Have Cancer: You Don't Have to Tell Everyone at Once

• Telling Your Children and Grandchildren You Have Cancer

• Planning for the Best When We Fear the Worst: Living With Cancer

• Getting Your Affairs in Order: Essential Tasks You Can’t Ignore

3. Preparing for Surgery and Treatment

Stage guide: Before Cancer Surgery: A Guide to Prepare, Plan, and Play

• Why I Prepared My Home, Finances, and Family Before Cancer Surgery

• Preparing My Home, Vaccines, and Bills Before Cancer Surgery

• Preparing for Cancer Surgery, a Chemo Port & Treatment

• Preparing My Kitchen and Diet Before Cancer Surgery

• The Cancer Surgery I Barely Remember

• Severe Anemia After Cancer Surgery: What It Felt Like and Why I Still Watch My Iron Levels

4. Getting Through Chemotherapy

Stage guide: First Chemotherapy Guide: What I Wish I Had Known

• Before My First Chemotherapy: The Fear of What Was About to Happen

• What I Wish I Knew Before My First Chemotherapy Day

• My First Chemotherapy Infusion Reaction: Why I Learned to Speak Up

• Why You Should Grieve Your Hair During Chemotherapy

• Chemotherapy Hair Loss: The Hats That Helped Me Face Cancer

• Working Through Chemotherapy When My Body Wanted to Sleep

• Working Through Chemotherapy Cost Me the Rest My Body Needed

• The False-Positive TB Test That Helped Find My Pneumonia During Chemotherapy

• My First Year With Stage IV Uterine Leiomyosarcoma

5. Self-Advocacy, Testing, and Treatment Decisions

Stage guide: Cancer Self-Advocacy Guide: Ask One More Question

• Fighting for Cancer Care: The Battle After Diagnosis

• When My Cancer Doctor Would Not Listen, I Found One Who Would

• How Cancer Support Groups Led Me to Genetic & Tumor Testing

• My Friend Had the Same Cancer I Did- Tumor Testing & Targeted Therapy

• How Tumor Testing, Research, and Self-Advocacy Led Me to Maintenance Treatment

• Why I Chose Exemestane for My ER/PR-Positive Rare Cancer

• Why I Chose Lorlatinib for My ALK-Positive Rare Cancer

• When Do You Stop Cancer Maintenance Treatment?

• Treating a Spinal Lesion When the Biopsy Was Inconclusive

• The Lump on My Back: The Promise That Made Me Show It to the Cancer Doctor

• Why I Use a Signatera Test to Watch for My Rare Cancer in My Blood

• The Stress of Cancer Testing: Living With Uncertainty

• Cancer Testing Stress: When the Wrong Test Delayed Answers

• Starting a GLP-1 Drug While Taking Cancer Medications

• The Unpaid Administrative Job Cancer Gave Me: Managing Cancer Medical Records

• When Health Insurance Tried to Decide My Cancer Care: Appealing Cancer Insurance Denials

6. The Financial Cost of Cancer

Stage guide: Cost of Cancer Guide: The Bills No One Warns You About

• The Hidden Cost of Cancer: How to Get Help With Cancer Medical Bills

• The Financial Cost of Cancer Treatment: What Surviving Cancer Really Cost Me

• The Financial Cost of Cancer: My Experience with Financial Toxicity

• HSA and Cancer: How My HSA Became a Cancer Lifeline

• The Emotional Cost of Suddenly Going on Short-Term Disability: Emotional Effects

• When Chronic Illness Forced Me to Step Away From Work: Short-Term Disability With Chronic Illness

7. The Emotional Side of Cancer

Stage guide: Emotional Side of Cancer Guide: Fear, Grief, and Hope

• The Emotional Side of Cancer

• The Stress of Cancer: Trying to Heal While Life Keeps Moving

• Cancer and Everyday Life: Managing Stress

• Scanxiety After Cancer: Why It Can Still Feel Real Years Later

• Survivor’s Guilt After Rare Cancer

• Feeling Like a Burden With Cancer: Needing Help Without Believing My Life Was an Inconvenience

• Grieving the Able-Bodied Life I Had Before Cancer

• After Cancer, I Stopped Giving Everyone Access to My Peace: Reducing Stress

• Setting Boundaries During Cancer Treatment: Protecting Your Energy

• Learning to Trust My Body Again After Cancer

8. Caregivers, Family, and the Cancer Community

Stage guide: Cancer Caregiver Guide: No One Should Carry It Alone

• Cancer Caregiving Is Too Much for One Person: Finding Cancer Caregiving Support

• When Cancer Caregivers Need Help Too

• Learning to Accept Help During Cancer Treatment

• Cancer, Emotional Support Animals, and Family Healing

• Cancer Creates a Kinship Few People Understand: The Cancer Survivor Community

9. Life After Treatment: NED, Survivorship, and Living Fully

Stage guide: Life After Cancer Guide: NED, Survivorship, and Joy

• NED Cancer Survivorship: Life After Cancer Treatment Journey

• Five Years After Stage IV Cancer: A Milestone I Was Grateful to Reach but Never Took for Granted

• How Cancer Turned Me Into a Chronic Illness Patient

• Traveling After Cancer Is Not as Simple as Packing a Suitcase

• Traveling After Cancer Is Possible, but It Takes a Different Kind of Planning

• Bought a House After Cancer Diagnosis: Why I Chose to Build a Future

• Why I Threw Myself a Purple Cancer Survival Party

• Finding Joy With Cancer: I Did Not Wait for Treatment, Pain, and Fear to Disappear Before I Started Living Again

• Cancer Changed My Priorities: My Relationship With Time

• Why Cancer Pushed Me to Publish My First Poetry Book

Where to Go From Here

No one should face cancer alone. At Surviving Life Lessons, we believe in life survivors helping life strugglers. Our Healthcare Self-Advocacy Support Group is a place to learn how to speak up for your care, and our Cancer Support Group connects you with others who understand what you are facing. You can also browse our Community Groups Catalog to find every group that fits where you are right now.

Next, read My Stage IV Uterine Leiomyosarcoma Diagnosis: One Step at a Time or Understanding Uterine Leiomyosarcoma: What I Learned After My Diagnosis.

Your Story Matters

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Helpful Resources for Your Journey

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References

• National Cancer Institute. Uterine Sarcoma Treatment (PDQ), Patient Version. cancer.gov

• U.S. Food and Drug Administration. Laparoscopic Power Morcellators: Safety Communications. fda.gov

• National Leiomyosarcoma Foundation. nlmsf.org

• American Cancer Society. Coping With Cancer. cancer.org

• American Society of Clinical Oncology. Cancer.Net: Survivorship. cancer.net

About the Author:

Deborah Ann Martin is the founder of Surviving Life Lessons, a published author, poet, speaker, and trainer with over 20 years of management experience across multiple industries. An MBA graduate, U.S. veteran, single mother, and rare cancer survivor, Deborah brings both professional expertise and lived experience to her writing on resilience, leadership, personal growth, and overcoming adversity. Her mission is to empower others with practical wisdom and real-life insight to navigate life’s challenges with strength and purpose.