End of a Blog, Birth of an Author

Our Stories Always Continue Quote by Lauren Oliver

Welcome readers!

Thank you for your visits, comments, encouragement and readership at Illuminate Everyday. This publishing portal has broadened my writing and publishing abilities but also allowed me to develop important connections with individuals like you.

I started Illuminate Everyday in January 2008. Today will be my last post. I will always be a writer, but what and where I write has shifted to become longer and shorter format writing in books and on social media.

Illuminate Everyday started as a place of expression, but over the years that concept became my way of life.

I blogged as a way to understand my world and the world around me. I wrote in a way that illuminated, or brought light to, the circumstances, people and feelings I encountered.

This process helped me to process some difficult experiences that arose during this time, including a financial crisis and a cancer diagnosis.

Blogging changed me. Not only did I draw the light out of ordinary life situations, as I wrote, I found light within some of life’s hardest ones.

I hope that you find that light, too. It is real.

My writing archives at Illuminate Everyday are always open. Explore my past posts in these categories: Create, Nurture, Ponder, Believe.

Find all of my essays alphabetically in the Index or search by keywords.

My author publishing home will now be www.teresahirst.com. Please subscribe by email to receive important news, blog posts and the latest updates on book releases and promotions.

My shorter, more personal posts will come through social media, something that was still developing when I began blogging seven years ago. Thank you for the wonderful rapport we’ve enjoyed. Please follow me so we can stay connected:

on Facebook

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And now to continue our stories . . .

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Where I Am: Living with Cancer

Enduring Well #WhereIAm

The Mormon Channel has been doing a fun photo sharing campaign on social media. Share your photos, using the hashtag‪#‎WhereIAm‬, and express where you are physically, emotionally, or spiritually.

I sense lately from people who’ve asked me the typical question, “How are you?” that there is more behind it, more of a question that mirrors the one from the Mormon Channel such as, “How are you really doing physically? emotionally? spiritually?”

Rather than blurt out an awkward “cancer update” or “Here’s where I’m at with my cancer treatment” when people ask this question, I felt it was time to take to the blog and write and express how I’m living with cancer.

One year ago, in the middle of promoting Twelve Stones to Remember Him, I identified that the symptoms I was having were just not normal and needed to either escalate to the point of needing medical attention or they needed to recede and stop bothering me.

After praying for some guidance on this, the symptoms did increase to the point that I knew that I needed to make an appointment with a specialist and follow through on that. You can read about my journey with neuroendocrine cancer here.

Where am I today? Physically?

I visited the oncologist last week, and we both agreed I’m doing pretty well. Although I do not currently have any tumors large enough to register on scans, he does believe small neuroendocrine tumors are in my liver as indicated by what my blood markers show.

Despite what might sound like a discouraging progression of disease, it is really the end of a year of uncovering the extent and stage of disease, more than anything. Most importantly, he is confident that I’m physically stable with the treatment I am now receiving.

What is that treatment? I receive long acting shots of Sandostatin every three weeks. Here’s a bit about what that is:

Octreotide (the generic name for Sandostatin) and Lanreotide are medicines that are called “Somatostatin Analogues”.  They are synthetic versions of a natural hormone we all make called somatostatin.  It’s like the brake pedal of your body.  It slow digestion, hormonal function, and a lot more.  Unfortunately, the natural stuff only lasts 2 minutes and is broken down quickly.  Octreotide and lanreotide, on the other hand can last for 4-6 hours, and when given in the depot version, last for a month.  Both medicines bind to the somatostatin receptor on NETs and help them to both decrease hormone secretion and growth. — Read more from Dr. Eric Liu at the Healing Net Foundation

Those hormone secretions have been the biggest challenge and what I believe alerted me that something was wrong in the first place. With this medication, I don’t have many side effects beyond a small amount of nausea and pain at the injection site.  Plus, my blood markers show some response.

Does that mean I’m going in remission? Not really. In the last year, I’ve learned that cancer, especially neuroendocrine cancer, isn’t that black and white.

This is a chronic cancer, and this medication is keeping the tumors in check. With the right monitoring, care and treatment, it is very manageable.

I may have other treatments in the future and like other chronic diseases, it will be in the background of my life, but right now I’m happy to be standing on stable ground, even though it is cold Minnesota ground at that.

Where I am emotionally? Spiritually?

Again, I’ve often reacted in terms of black and white with my emotions–negative experiences meant sad, positive ones meant happy.

Believe me, I don’t like the pain or the unidentified causes of some of my symptoms. The little things are the biggest irritants. It’s always been that way in my life. Progressing through this trial, though, has shown me that I can magnify those negatives or deal with them the best I can and focus my energy somewhere positive (like Friday’s release of Flowers of Grace).

I feel more joy and happiness. I feel a greater senses of calm about the future even though I have a more obscure picture of what it looks like. I count active everyday, every hour faith and gratitude as the reason for this change. Both consciously turn me to God so that I can see He is my helper in this, not my enemy.

So, here’s where I am: Just as I stand on stable ground in a Minnesota winter, this season with cancer isn’t one I’d choose. But the light of the gospel still shines and I know where I’m pointed and how I’m going to get there—by enduring well.

What about you? How would you express where you are emotionally? physically? spiritually? Share in the comments. Send me an email. Or share your photo on social media.

 

 

 

 

 

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When Goals Come In and Out of Focus

Serpentine pathway stones on a park lawn - Photo by Graphic Stock Images

I started the year without any written goals. You, too? I’m glad to not be the only one.

That doesn’t mean I’m not going to accomplish anything this year. I am. I’m publishing my first novel Flowers of Grace next month and hope to finish the sequel before the end of the year.

But I will admit that I only bring out these goals on weekdays when school is in session, I’m not at the doctor or I am finished Googling symptoms of my health crises of the moment.

Basically, I haven’t gotten around to goal setting yet this year. Or goal achieving.

Having a chronic disease takes resources of time, money, energy and thought that distract or prevent me from a whole lot of activities that used to drive me.

And that makes me—a highly passionate, driven person—pretty sad.

Losing sight of my goals is the biggest everyday struggle that living with cancer brings to my life. Pain and physical discomfort are up there, but they certainly do not top the list—they change it.

The list and order of priorities in my life is far different from a year ago. While I’m still a writer, my approach to all the facets of a writer’s life have to be different.

Translation? It’s certainly not going to be a Type A approach anymore.

But that’s not all bad. My mom often referred to herself as the tortoise. Like in the Tortoise and the Hare. She isn’t in a start and stop race in her life. She is steadily moving forward all the time.

Barriers like these may confuse our way but part of the adventure is finding the solutions.

Unexpected Time Commitments

The  number of doctors’ appointments last year saved my life but started a bad habit. I returned to my “one thing a day” mindset. If I had an appointment, I mentally did not plan anything else. Very quickly, this pattern took my goals out of focus for the day  and possibly even longer if I let a string of those days accumulate.

Whether you or someone else is sick, an appliance breaks or a blizzard keeps everyone at home, unexpected commitments appear to steal our time for the things we would rather accomplish. Technically, they do require more time. But I’ve also discovered that I also use that lost time to excuse my need to be productive in the hours or days before and after the disruption.

Rescue the time not spent directly preparing for, carrying out or following through on unexpected commitments and use it for something productive. 

Emotions that Shift Priorities

A life threatening or chronic illness has a way of obscuring plans for the future. On particularly emotional days, how I feel—whether that’s anxiety or discouragement—can actually change my capacity to visualize my pointed direction, or even worse, cloud me from seeing any direction at all.

Whether it is a bad grade on a test or a lost job, disappointments seem to alter our future course. If  emotions rule the shift rather than clear, constructive planning, our priorities and plans to reach them will bounce all over, never settling into a sure and steady course.

Plan or replan your day, your schedule, your goals and your life at a time when emotions are level.

Responses that Block Progress

Just as I need caretakers and doctors to help me to heal, an audience made it possible for me to publish my book last year and will be critical as I cross over into the self-published fiction world this year.

We meet our goals with the assistance and support of other people. But just like I can’t demand that people read or like what I write, we can’t control how other people will receive, respond or participate in our goals.

That sounds obvious, but think about parenting. You make a decision about a schedule for the family and present it to them. They react negatively. Then what? Do you scrap the schedule? Fight for it? Pretend it never existed?

Well, sometimes, you shelve the schedule until you can gather support. You may modify it and bring it to the front. Or you may persuade everyone that it will be good as it is after all.

The supportive response or lack of it can cause an objective to come in or out of focus as we try to discern how to proceed.

Treat people are individuals, not objectives by forgoing negativity about their response. Rethink your route to a goal rather than giving up on the person or the goal itself.

Even when I’ve written down my goals, I’ve still wasted time, had a meltdown or blamed others. At those times I wouldn’t be able to see the most cleverly crafted, stylistically designed or poetically written statement of purpose if it were glued to my hand. My goals become blocked by those barriers.

But what’s great about a new year isn’t that I think I will miraculously be cured of cancer or I will suddenly have a best seller.

It is simply to recognize what’s preventing me from going where I want to go or becoming who I want to be, and then overcoming it.

I don’t have an unusual amount of energy, resources, or even perfect health, but let’s still go for it.

 

 

 

 

 

 

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When You Can’t Ease Into It

 

Octreotide shot

That’s not a stock photo. This is actually my very own dining room where I’m filling a syringe to give myself a shot in the belly.

I didn’t think I could ever do that a week ago, but now I’ve doing it every 12 hours.  It’s amazing what you can do in circumstances you wouldn’t choose. And who you can become with the right motivation.

I’ve spent the last two weeks immersed once again in the medical world.

I set out by myself at 4:30 a.m. just days before Thanksgiving for my trip to Iowa City. Paul stayed home with our high schoolers who had finals, and they all caught up with me the next day at my parent’s home in Missouri.

At the cancer clinic at the University of Iowa I saw a renowned NET specialist, Dr. O’Dorisio, who has researched and treated neuroendocrine cancers for decades. He ordered enough blood tests to fill up three pages of MY CHART and taught me about neuroendocrine cancer—and my tumors in particular. Their pathologists did a unique test on my tumor samples that indicate that my tumors hold positive receptors, which is good for further treatments and tests that target those receptors. “Like a lock and key,” he said, drawing a fun little picture for me.

Then, I received the “Cadillac” of scans for my disease, the GA-68 PET/CT. Go here to find out why it is so good. It was a long process, but after they injected the special gallium contrast mix, they covered me in a heated blanket and let me sleep. My claustrophobia abated in the scan itself, and seven hours after I arrived at the clinic, I left for a three-hour drive to Missouri.

The results of the scan did not show any visible metastatic or recurrent tumors. My family and I spent the next few days in truly grateful THANKS-giving.

Early the next Monday morning, though, several of the blood tests results came back still showing markers of disease, including elevated serotonin levels.

What does this mean? Serotonin is the happy medicine, right? Well, not exactly. In elevated amounts it can cause some bad problems like flushing, diarrhea, anxiety and a fast heart rate. All of these are symptoms that carcinoid patients can have and that I’ve experienced.

Crash. Back to cancer life again. When I saw my oncologist the next morning, he very kindly explained that with tumors found in the lymph nodes and metastatic disease found elsewhere, I’m past the curative stage of this disease. I translated that to mean that not one or three or ten surgeries can cut this out of my future completely.

So where does that leave me? With a great prognosis right alongside many other long-surviving NET patients, and a new treatment plan to keep the symptoms and growth of the cancer in check with a drug called Sandostatin or Octreotide. You can read all about it here. It’s not considered a true “chemo” drug. It is like the natural chemical in the body called somatostatin that inhibits the release of certain hormones.

And then my oncologist told me how this drug is administered—in a short acting or long acting shot.

“You’ll start with the short-acting one twice a day at home,” he said.

“Do I have to do that?” The realization of this next step arose in me.

He nodded. With more confidence than I’ve had in most other endeavors in life, I agreed.

But I held the first needle on the edge of my pinched skin, like I was going to ease it in. Like most of this experience, though, there is no easing into it.

“Just push it in quickly,” the nurse coached me.

And just like that, I expanded what I can do, overcoming what I thought I couldn’t.

The first two shots didn’t agree with my sensitive stomach, but after a brief respite with IV fluids, a new schedule for eating, and a powerful little bottle of anti-nausea medicine, I’ve now successfully made it through several days of twice-daily self-administered shots. As long as these hold, I will switch to monthly long-acting shots in a week or so.

Until then, it’s time again to gather the supplies and start the new routine.

 

 

 

 

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My Journey with NeuroEndocrine Cancer

ncd-logo

Six months ago I heard the word carcinoid for the first time. I had a mass in my appendix and had been waiting for 40 minutes beyond our appointment time in the exam room of the colorectal surgeon who was going to remove it. My husband had left work to be with me; we were both anxious.

Two minutes later the doctor arrived, introduced himself and said he’d been studying my scans with a radiologist for the last hour trying to determine what I had. I guess you can forgive a doctor who’s not with you but still working on your case.

I told him my symptoms that brought me in: right lower abdominal pain and diarrhea for several months. Neither of those had ever erupted to the point of emergency, and since there didn’t seem to be inflammation on the CT, no one thought it was appendicitis. He poked my belly in that spot they check for that, but the pain seemed lower. He said, “It could be carcinoid, but that doesn’t seem to fit your story.”

He used that phrase “my story” a lot in the next six weeks. I know he meant my case or my symptoms, but to me it sounded like he didn’t believe I had the symptoms that brought me to the doctor in the first place or that they were unrelated to the mass in my appendix. The scans didn’t show any tumors in my liver, and he said carcinoid symptoms generally don’t manifest unless tumors have spread to the liver.

You can bet that I went right home and looked for more information about carcinoid online. Confusion surrounding symptoms often manifests itself during the diagnosis stage of carcinoid cancer. But i didn’t learn that right away. It took weeks and months of educating myself about this rare disease.

I received a confirmed diagnosis of carcinoid or neuroendocrine tumors six weeks after my first GI appointment. Three surgeries in six months revealed a primary neuroendocrine tumor in my appendix, metastatic tumors in the regional lymph nodes and implanted metastatic tumors in the pelvis.

Some of the best sources of information have come from carcinoid.org, where I also found links to join an email list at acor.org. This has been a valuable daily source of information from patients, survivors, family and even a leading NET specialist. I liked and followed a number of these similar sites on social media and immersed myself in learning. I hope you will, too, in recognition of NET Cancer Day – A day of worldwide awareness of NET Cancers.

Carcinoid neuroendocrine cancers are relatively rare malignancies distinguished by small, slow growing tumors which affect the neuroendocrine system. These tumors typically originate in the gastro-intestinal tract, but sometimes arise in the lungs or other organs. Incidence is around 4 persons in 100,000 – but in many parts of the world the disease is under-diagnosed. — from the ACOR carcinoid site.

I’ve chronicled my emotional and physical experience over the last six months of diagnosis and treatment here on my blog. Links to each post are listed in order on my timeline of illness below. They also express the hope I’ve found in my experience with carcinoid or neuroendocrine cancer. My hope comes from three sources: Information about my disease, faith in Jesus Christ, and the support of family, friends, doctors and nurses.

March – Met with gastroenterologist for bowel changes, persistent diarrhea and a right lower abdominal pain that came and went for a few months. Thought it was celiac, which my sister has, or just IBS. Blood test, CT and colonoscopy ordered. I almost didn’t do these. It seemed like a lot of time and expense for a little diarrhea. When I wavered, the doctor asked, “Are you going to go through with this?” I did, and it saved my life. The CT revealed a mass in appendix. Had an MRI, too. End of the month, met with a colorectal surgeon. He’s not sure what the mass is, mentions possibility of carcinoid. In my research, I’m sure this is what I have as I wait for my surgery date.

April – Had an appendectomy in the middle of the month. Pathology revealed a 1.7 cm carcinoid or neuroendocrine tumor. It’s invading the nerve cells around it. New surgery scheduled to remove part of my colon.

My thoughts at the time:

A health crisis will not rock this memorial of faith.  April 24

Ask in prayer for tender mercies April 28

Five ways to reach out when a friend is suffering May 12

May – Had a right hemi-colectomy. Yucky surgery. Removed 1/3 of my colon and reattached large intestine to small intestine. Was in hospital 4 days. Went home but couldn’t stop vomiting. Returned to the ER for a possible bowel obstruction. Later that week I learned that tumor has metastasized to the regional lymph nodes.

How I was coping:

Gratitude: The answer to a cancer diagnosis? May 24

When the caretaker needs care May 29

June – Referred to a local oncologist and met with him to review more information about the disease and determine a monitoring schedule of blood work and scans over the following months.

The healing process:

Defined by faith June 16

Better, but not back to normal July 10

July and August – Had first round of CT scans, which reveal cysts in several places but no visible tumors. Experience two or three episodes of flushing and other carcinoid syndrome symptoms.

October – Have my annual physical with primary care/OBGYN. An ultrasound reveals a large ovarian cyst that needs to be removed. During surgery my OBGYN finds and removes two more neuroendocrine tumors that have implanted in pelvic wall. Schedule an appointment to meet with a specialist at the University of Iowa, which I’ve discovered is an essential step for every NET patient to receive a second opinion about their disease, identify treatment options, and have access to a doctor fully knowledgable about all aspects of this rare disease.

Where I am today:

I may have cancer but my life looks pretty normal October 30

It’s interesting how a diagnosis can open a person to new communities, new information and new perspectives. All of these have eased my anxiety and reinforced my gratitude for life. Real life challenges, like cancer, invite me to replace fear and self absorption with courage and compassion.

A final note: Some carcinoid patients express disdain for doctors who may not fully understand this disease. Even with the example in my opening story, I still respect each and every one of my doctors. They acted quickly and as thoroughly as they could with each incident. Some symptoms along the way have been minimized, but I have armed myself with information from the specialists and persisted. I’ve found this the best way to extend awareness and bring about change on any topic in life, even in the medical profession.

If you would like to donate to neuroendocrine tumor research, here are three avenues:

The Healing NET Foundation

Caring for Carcinoid Immunotherapy Initiative 

LSUHSC Foundation 
Nets research in memo line
Send to Eugene Woltering 
200 West Esplanade Suite 200
Kenner, LA 70065

 

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I May Have Cancer But My Life Looks Pretty Normal

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I have stage three neuroendocrine cancer. While I want to share this experience with others, I’m sometimes embarrassed by the response. Why?

I’m not suffering.
Really. Not like so many others around you and I who have daily burdens to carry. Seek out someone near to you who is suffering and give him or her a call, drop by for a visit or do something thoughtful. Those who’ve done that for me in my post surgery days have lifted my spirits. Thank you for your attention. How could I feel that I’m suffering with this much compassion?

I’m certainly not as inspiring as you think I am.
I’m not amazing. I’m full of weaknesses. I can still have a bad attitude and be snappy to my family. Both my doctor and my husband have had to encourage me to not look for the worst outcome first. I’m not a positive burst of sunshine, but I am choosing faith in God and a grateful heart to cope with this. And if that’s inspiring to you, realize that it is a day by day choice, not a natural gift.

Other than many more doctors’ visits, my life looks like normal.
I hope to live a long life. Many neuroendocrine patients are going on 20 years of survival. I’m not on any harsh drugs. I probably will not have chemotherapy. I exercise and eat right, even better than before this. Plus, I’m preparing my first novel for publication in February and working on freelance writing projects. I want to contribute, be given opportunities to serve, and take chances to grow. If I’m too tired, I’ll tell you.

So what is different?
My worst pain is a frozen shoulder resulting from the first surgery. I spend more time at the physical therapist and orthopedist than at any cancer-related doctor visit.

However, this week I discovered that the first two surgeries didn’t “cure” me. I felt like something remained. But I’ve been told that many cancer patients feel this way, anxious about every twinge. So, my gifted and thorough OBGYN took a few biopsies during a surgery for another issue last week.

Unfortunately, new tumors have implanted themselves in my pelvic wall.

Where do I go from here?
I am going to Iowa. Nope, I’m not becoming a farmer or moving from Minnesota. But I am going to visit a specialist in the field of neuroendocrine tumor research and treatment at the University of Iowa right before Thanksgiving. I will receive a special scan and devise a treatment plan with the team there.

Honestly, my doctors here have been vigilant. I will still work with them but in consultation with a NET specialist, which is imperative with these kinds of tumors.

From the gastroenterologist who ordered the first CT to the colorectal surgeon who performed my first two surgeries to the oncologist who manages my ongoing cancer care to my primary care/OBGYN, I have worked with well-trained and mostly attentive doctors.

Most neuroendocrine cancers take years to diagnosis. For me, this wasn’t the case. It was six weeks from the time of those stomach pains that I could not ignore to surgery where the primary tumor was removed.

That’s not usually the case.

You see, this cancer can hide in places like the bowels and be very difficult to detect. It is relatively slow growing and is also known as carcinoid, which means “cancer-like.”  For those reasons,  some doctors dismiss it or the symptoms or act like it’s not really cancer or that aggressive treatment isn’t necessary. I’ll write more about that for NET Cancer Day, which is Nov 10. That’s when I’ll share my back story and my initial symptoms to raise awareness about the disease.

Let’s just say I’m educating myself about the right questions to ask my doctors, and in the process, they are learning more about this disease along with me.

So, what can you do?
For now, I’m doing okay emotionally.  I don’t mind talking about my disease with you or answering your questions. In fact, that’s better than avoiding me or assuming something that isn’t correct. Please don’t avoid me or others who are suffering. Hugs are always nice, even if you’re not sure what to say. We all have challenges to overcome. I’m just happy I learned from the earlier ones how to help me with this one.

You can always pray for me, and I hope many others.
But please don’t worry over us.

 

 

 

 

 

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