I’m on a plane as I write this recap of the first ever small cell lung cancer conference for patients, held in Raleigh Durham North Carolina. Because of the timing of my flight home and the opportunity to ride share with another attendee, (THANK YOU Jim) I didn’t get to stay for the last two sessions. (Sorry to the speakers I missed!) I also didn’t get to leave my end-of-event review there, so here is my recap in a blog.

This 2 day event was hosted by LiveLung/Dusty Joy Foundation, a small but mighty team of only a few. What I experienced as an attendee was an organized and thought-filled conference that focused on the person living with small cell lung cancer and their caregiver.

I appreciated hearing from experts like Dr. Stephen Liu about the “not ready for prime time” biomarkers discovered in small cell and the studies and new trials. I learned that those with targeted mutations that transform into SCLC must be treated differently. Those folks also NEED more research into effective treatment options.

Michelle Ottersbach encouraged us to move our bodies- even in the smallest ways- like writing alphabet letters with your feet while sitting down. Go ahead, I know you want to try it. I found myself doing it with both feet on my previous flight! I didn’t care who was watching! 😊

I also learned something from the cancer dietician that blew my mind. “People who consume only organic food do not experience better health outcomes”. WHATtheWHAT? Check it yourself at cancerdietitian.com This little nugget of information will save me $$ by keeping me out of those expensive “wholesome” organic grocery stores.

The White Ribbon Project was represented via zoom and former NFL player, Chris Draft. Their presentations and the white ribbons Chris brought showed the attendees that there WERE people all over the world who supported lung cancer awareness and not feel stigmatized or embarrassed by their diagnosis. People with SCLC deserve options and a chance to survive and thrive. Chris gave every patient a signed white ribbon.

This event was casual and warm. There were many opportunities to network and listen to survivor stories. Most of all, there was an underlying HOPE that encouraging things are on the horizon for people diagnosed with small cell lung cancer. It can’t come soon enough! My biggest HOPE is that one day no one else will die from sclc, like my dad did. I wish there was something like this when he was diagnosed 20 years ago!

All attendees were divided and put on panels. Dusty Donaldson moderated conversations and conducted Q & A about treatments, clinical trials, early CT screening and the need for screening awareness. Almost all attendees said they learned new things from the experts and from each other.

I have planned 33 in person lung cancer patient conferences in my career as well as numerous virtual webinars, zoom meetings, interviews and podcast episodes. This was the FIRST time I was at a lung cancer patient conference that I didn’t plan!I

The team at LiveLung should be very proud of themselves! 👍🏼

Thanks again for the invitation, LiveLung. I loved being able to chat about cancer caregiving and lung cancer advocacy. I was able to share via hard copy and electronically the caregiver action plan I developed and tips from my book for co-survivors. I sure have MISSED loving on patients and caregivers. I came home with a full heart.
​
And the icing on the cake was a quick visit with my oldest brother and his family. He just had a major health event himself, so I felt blessed to be able to see him and give him a big hug! ❤️

Today I’m talking about Chronic Disease. 
Whether that’s cancer or lupus or liver disease- any chronic condition that you have to live with and survive can relate to the topic today.  The changing mindset.
I happen to have had several chronic diseases.  5 years ago, I was surprisingly diagnosed with a genetic liver disease that impacts my immune system.  I also developed arthritis, borderline lupus, type 3 diabetes and Hashimoto’s thyroiditis during that time too. 

I’m happy to say in the last year I no longer have glucose intolerance or severe problems with arthritis or lupus and my thyroid disease is controlled- but it’s been a long road.  And I’m still a stage 4 liver disease patient in a clinical trial.
I am more of a type A personality than a type B.  I had an abundant amount of energy, an amazingly rewarding career and an active family. 

HOW in the HECK could I be a sick person? 

When I told people about my disease, I always mentioned that before my “surprise dx” that I was perfectly healthy- aside from that 1 thyroid pill a day I took for a low functioning thyroid. 
I’m not a “sick” person. I support “sick” people!

I. Am. Not. A. Sick. Person.
But I was.  I had become one.  

I was tired- not just “I’ve had a busy day” tired, but fatigued to the bone tired. My skin was rash-y and ashen and I had developed some acne from the new medications.  My joints and muscles hurt- a lot.  I suffered from leg cramps and neuropathy. Insomnia at night because of the pain.  I stopped going out.  I didn’t enjoy crafting or cooking. 
I struggled to let anyone help me.  I’m stubborn to a fault and won’t ask for help. One productive day of house cleaning meant two days in bed.  WHAT in the HECK was happening to me?
I was living a sick person’s life.  I was a sick person.

In my mind I was a healthy person. I was capable and independent and strong. My nickname was Ninja for heavens sake!  
I had to change my mindset and reconcile myself to the here and now.  That didn’t mean giving up…it meant giving in to my current situation.  If I needed help, I had to learn how to ask for it.  If I worried about pain, I had to recognize that it would be best if I stayed home.  I had to relearn my limitations and use good physical moments sparingly.  I was different now.  I had more empathy and sympathized with the patients I supported.  I no longer held myself to such high expectations and I started to celebrate small accomplishments. 

I had to learn who this new me was.  I was not my disease but my disease limited me.  What did this Katie like to do? What brought this Katie joy and happiness?  What kind of people did this Katie want to surround herself with?  What was most important to this new me?

I hit my lowest point and then I started my climb back up.

Long story short- 18 months ago I aggressively sought out a clinical trial.  It’s a double-blind trial but I know it’s working and I’ve gotten stronger and healthier.  I’ll never be the same person I was before- but I’m a better person.
While I’m not as physically strong as the old me was, I’m stronger in mind and soul than I’ve ever been right now, today.
 
What about you? 
What’s your mindset?
Who are you today?
Are you defined by your disease or have you challenged yourself to try to overcome it? 

I want to hear from you.
Until next time, may your coffee kick in before reality does
KatieB
Listen to the podcast here: ​https://anchor.fm/katiebrown/episodes/CHRONIC-DISEASE-The-Changing-Mindset-e4qhcb

Many of us became caregivers without any warning. 
One day you’re coming home from work and thinking about what you’ll fix your little family for dinner and the next thing you know your loved one is diagnosed with a life changing, future-altering cancer.  What. In. The. Heck????  (Picture standing in the middle of the street with a speeding bus coming right at you- THAT is how I felt- every freaking day)

Without a manual or any type of guidance or mentorship you are swimming against the current of the healthcare system and all your emotions.  Everything changes- except the responsibilities you had before the cancer diagnosis.  You still have the mortgage and those utility bills to pay.  Those don’t stop for cancer.  In fact, in a lot of cases, your expenses increase after cancer.

So, what do you do?  How do you balance caregiving and your career?  Is that even possible?
When my dad was diagnosed with lung cancer, I had just started a career in the legal industry in downtown Dallas.  I was my dad’s primary healthcare caregiver.  I had a demanding job with a two hour commute every day, and I was married with a 4-year-old.

I did everything wrong.  I never asked for help.  I thought I was the only one who could do anything- as if the more I did it would be enough to cure the cancer.  Believe me, martyrdom while caregiving is never pretty.  Burnout is real. You can make yourself physically and emotionally sick trying to do it all yourself.

So, because hindsight is 20/20, I have some advice for that caregiver standing in front of that speeding bus.  Hopefully, some of this advice will help you too.

First, get organized at home.  This means creating a priority list, a to-do list, a medication list, an appointment calendar, etc.. 
Priority lists are things that you and your patient must do (like go to drs appointments, pick up and take medications, pay bills, purchasing groceries for meals, etc…)  A to-do list can be one or more lists of all your top priorities and secondary priorities.  Secondary priorities are things like housekeeping, laundry, yard work and other household chores for both yourself and the patient if you don’t live together.

Together, you and the patient come up with a plan on how to get things done on your lists.  Are there other members of the family, friends or neighbors that can help you with the patient and household chores?  How does the patient get to and from appointments and treatment? Having a caregiving action plan will set expectations and give you and your patient the chance to work through the scenarios.

Next, get organized at work.  Have a discussion with your manager.  Let him or her know that your loved one has been diagnosed with cancer.  Let your manager know that while this is a difficult time in your personal life that you are 100% committed to your job.  Ask about flexible work policies and if you and your manager can come up with a plan if your loved one has a health emergency. Is it possible for you to have a flexible work schedule or work 1-2 days from home?  It’s easier for your manager to be supportive if you’re still a productive member of the team. Whether or not your manager can make any accommodations for you, he will know that you are honest and still devoted to your job.

Brush up on the Family Medical Leave Act, or FMLA in case this is something you may need.
The FMLA allows you to take up to 12 weeks off every year, without pay but with job security. Here’s what you should understand about the law:
You must meet certain requirements. In general, you must work for a company with at least 50 employees, a government agency, or elementary or secondary school to be covered, although state laws may cover you at a smaller employer, so do your research. You must have worked there for at least 12 months, and for at least 1,250 hours in the 12 months prior to taking time off. And you must work where your employer has at least 50 employees within 75 miles.
You might have to use your vacation first before using FMLA and you don’t have to take it all at once.

I didn’t use FMLA and didn’t actually take much time off except when my dad had an emergency.  I found going to work a much needed mental and physical break from caregiving.  For at least 8 hours a day I could immerse myself in something other than cancer care, worrying about prognosis, side effects and what the future held.  I don’t want to paint a picture that things were easy once I got to work…it wasn’t…and there were issues- like bursting into tears in the elevator when a coworker I barely knew walked up and said hi to me, yelling at my cubicle mate to “shut up please!” while I was on the phone with the doctor and getting written up for that.  Like I said, hindsight is 20/20.

I firmly believe that any type of balance in your life stems from openly communicating your situation, asking for and receiving help, and practicing regular self-care. 

Imagine if you took care of yourself as well as you took care of your loved one….
Chew on that friends.

Until next time- May your coffee kick in before reality does...
​KatieB
Listen to the podcast here: https://anchor.fm/katiebrown/episodes/CAREGIVERS-How-to-Balance-Caregiving-and-Your-Career-e4qh0l

Let’s talk about burnout, shall we?

It’s real and unless you’ve achieved expert status in self-care and have a legion of paid caregivers and employees helping you around the clock- eventually you’ll visit burnout town too.
In the National Alliance for Caregiving and AARP Public Policy Institute survey, 40 percent of caretakers felt emotionally stressed, almost 20 percent said it caused financial problems, and about 20 percent felt physically strained.
Almost every caretaker experiences burnout at some point. If it does happen and it’s not addressed, the caregiver eventually becomes unable to provide good care.
 
For this reason, caregiver burnout can be harmful to the person receiving care as well as the caregiver.
According to healthline:
Signs and symptoms
There are warning signs before burnout occurs. Being aware of and watching for them lets you know when you need to take steps to combat or prevent the stress you’re experiencing.
 
General warning signs and symptoms for caregiver burnout include:

• anxiety
• avoiding people
• depression
• exhaustion
• feeling you’re losing control of your life
• irritability
• lack of energy
• losing interest in the things you like to do
• neglecting your needs and health

When it happens, caregiver burnout has both physical and emotional signs and symptoms. Physical signs and symptoms include:

• body aches and pains
• fatigue
• frequent headaches
• increased or decreased appetite that may cause changes in weight
• insomnia
• weakened immune system leading to frequent infections

 
The emotional signs and symptoms are less easy to recognize, and you may not notice them. Some of these are:

• anxiety
• becoming angry and argumentative
• becoming irritated easily and often
• constant worry
• depression
• feeling hopeless
• impatience
• inability to concentrate
• isolating yourself emotionally and physically
• lack of interest in things that used to make you happy
• lack of motivation
• Developing negative behaviors, such as quickly losing your temper or neglecting your caretaker duties, is another sign of burnout.

Caretaker burnout can be diagnosed by your doctor or mental health provider. There are also self-assessment tests you can take to determine if you have burnout.
So lets talk about some ways we can avoid burnout-

• Ask others for help. Remember that you don’t have to do everything. It’s OK to ask friends and family to do some of your caretaking tasks.
• Get support. Talking about what you’re going through and getting support from family and friends or a support group helps you process your feelings and emotions. Holding everything in can make you depressed and contribute to feeling overwhelmed. Consider seeking professional counseling, if necessary.
• Be honest with yourself. Know what you can and can’t do. Do the tasks that you can, and delegate the rest to others. Say no when you think a task will be too stressful or you don’t have time to do it.
• Talk to other caregivers. This helps you get support as well as allowing you to give support and encouragement to others going through something similar.
• Take regular breaks. Breaks help relieve some of your stress and restore your energy. Use the time to do the things that relax you and improve your mood. Even 10-minute breaks can help.
• Attend social activities. Meeting with friends, continuing your hobbies, and doing things you enjoy are important to maintain your happiness and avoid isolating yourself. The activity should be something that gets you away from the daily routine and setting of caregiving.
• Pay attention to your feelings and needs. It’s easy to forget to take care of your needs when you’re a caretaker. It’s important to focus on of yourself regularly and take care of your needs.
• Take care of your health. Keep your regular doctor appointments, including for preventive care, take your medications, and see your doctor when you feel sick. If you aren’t healthy, you can’t take care of someone else.
• Eat a healthy diet. Eating nutritious meals keeps you healthy and improves energy and stamina. Avoid junk food, which can make you feel sluggish.
• Exercise. Exercising is a great way to relieve stress, increase energy, and take time for yourself. It can also improve depression.
• Maintain your sleep schedule. Getting enough rest is important for your well-being and to maintain your stamina.
• Take family leave. If you work, make use of family leave benefits available to you. Removing the stress of work can reduce your responsibilities and free up more time for yourself.

 
A medical and a mental health professional can help you with sleep issues and coping with emotional stress. You can’t always recognize caregiver burnout, but if you commit to practicing self-care you will be able to recognize when things are off and your stress levels are higher than normal.
Chances are your loved one is just as worried about you as you are about them and they would take care of you if they could- so do them a favor by taking care of yourself.
That’s all for today friends.  Until next time, may your coffee kick in before reality does...
-Katie
​
Listen to this podcast here: anchor.fm/katiebrown/episodes/CAREGIVERS-Reducing-Stress-and-Avoiding-Burnout-e4qh7d

When I was diagnosed with late stage liver disease, there were no treatment options for me. 
Aside from a liver transplant (which I wasn’t sick enough for and many die waiting for) there was nothing.  That was in 2015.
Luckily my disease remained stable for 2 years. I made some lifestyle changes.  I stopped drinking sodas and eating foods with preservatives.  I walked as much as my body would let me. I starting seeing an Endocrinologist and a Rheumatologist.  I prayed- a lot!

In 2018 I learned of a clinical trial for my form of liver disease and began the screening process in March.  The clinical trial is a double-blind trial.  That’s means I would either get the actual trial drug or I would get placebo- a sugar pill.  I wasn’t worried about getting the placebo.  I wasn’t taking anything anyway so it wouldn’t be a loss of anything except my time, and I was getting paid for my time too.  $150 each visit to cover my commute, gas and parking.  I was 100% in if they would accept me.  And they did.

That was 6 months ago. 

Since then I’ve developed drug side effects.  I have a mean rash on my face, chronic constipation, bloating and joint pain. I was pretty certain the pills I had been taking was the actual trial drug and not just placebo.
Last week I had my month 6 ultrasound, fibroscan, blood work and scans.  (The scans I had had before the trial showed a very cirrhotic inflamed liver.  Dr. G said there was “progression.”)

The scans last week showed a smaller, healthier liver.  I was elated. The drug is working. While I look and feel a bit sicker- my liver is getting better.  It’s a trade off right now I guess.
​
Research is so important.  Don’t be afraid of clinical trials!   Clinical trials and participating in clinical trials will help scientists find the right dose and right combination to treat and possibility cure certain diseases. They can also be viable treatment options for people with untreatable diseases- like me!  

Recently I attended a healthcare meeting in my area. 
I was asked to share my story as a survivor of cancer and stage 4 liver disease.  It wasn’t a difficult thing to do- I’ve told my story several times- what was difficult for me were all the comments after. I’ve never been someone who accepted compliments well.

You’re such an inspiration!
You’re so strong.  You are a warrior!
I wish my patients were advocates too!
 
I’m I really an inspiration?  I work with and support cancer patients who’ve been fighting to live for years longer than me.  I don’t necessarily feel strong or warrior-like.  I’ll admit the uncertainty of my disease has gotten the best of me from time to time.  And self-advocacy – even for a 15 yr lung cancer advocate- did NOT come easy when it came to advocating for myself with my own disease.  Those first 6 months I was lost in the medical system and had no idea what I was doing.  Living with chronic or late stage disease is a process that you are forced to get used to and every experience is different.
So, I just smiled and thanked everyone.   Later at home I thought about all the things that would make a person an inspiration, strong, and empowered.

I don’t think someone is an inspiration simply because they survived a disease. If you were a passive patient who survived thanks to your medical treatment and team- well- you’re just lucky. Count your blessings every day!
Someone who takes their experience and survivorhood and informs, supports and/or empowers others- is an inspiration and inspires others.

If you went to every scheduled doctor’s appointment, test, treatment and scan- following your healthcare providers plan for you- you’re not necessarily a “strong” person.  If you did all of those things while caring for children, holding down a job, supporting others or against some other sort of personal adversity- you are indeed a pillar of strength.
A patient who complains about situations and exhibits anger towards others- isn’t an advocate.  It’s the patient who identifies unmet needs and works towards meeting them.  The squeaky wheel may draw some attention but you still need to drive that car over the finish line.
​
Inspire.
Strength.
Advocate.
 
Do you have the strength to inspire and advocate for others?
​

I’ve been a patient advocate and a caregiver of cancer patients for over fifteen years. 
Three years ago, I was diagnosed with a genetic liver disease, (stage 4 cirrhosis) and collected a handful of related autoimmune diseases like they were stamps.  It’s been a long 3 years.  The patient advocate (me) became the patient and now I theoretically straddle both sides of the fence.

I have 4 specialists.  I take 12 medications a day and some days are great while others are filled with pain.  I am chronic and if I’m lucky I will be chronic for a very long time.

In my mind I know how I would take care of me.  Ideally there are things as a caregiver I would say or do to make my life easier or better.  But I’m not my caregiver. My caregiver (my husband) can’t read my mind.  He hasn’t been caregiving for over 15 years like I have.  The past three years have been a struggle for him too.  It hasn’t been easy because  I’m not an easy patient.  I am type A, anxious by nature to always be productive and active.  Resting and taking care of myself doesn’t come naturally for me.  But we are learning as we go, trial by fire, so to speak. 

Luckily I work full time in a field I am passionate about.  I still advocate and support cancer patients.  On this side of the fence I am fluent in lung cancer support, cancer patient navigation and cancer advocacy.  I have patience for those who are newly diagnosed and struggling.  I provide information and resources and counselling.  I am good at what I do and I’m always eager to learn more.
​
On the other hand I’m still learning how to be a better patient, to recognize when my body needs rest, to ask for help and reserve my energy for the most important things in life.  I am learning how to ask questions and advocate for my care. I am learning to communicate what it is I am feeling. I am learning to be patient with my caregiver and my family. 
I’m still learning how to jump the fence between caregiver and patient.

Several pharmacuticals companies are in a race to develop the first NASH treatment drug.  Currently there isn't any treatment available for my type of liver disease (NASH)- it's watch and wait for the shoe to drop (months? years? decades?) and then if I'm lucky I may get a liver transplant. That's alot of months and years of being really sick, something I just wasn't looking forward to. For 3 years I've tried to get into promising clinical trials but becuase of the severity of my cirrhosis I've been excluded.

For the past couple of months I've been going thru the hoops of trying to qualify for an expanded double-blind phase 3 clinical trial for people with later stage disease.  I did weeks of blood work, scans, fibroscan, biopsy and more blood work.  Today I found out that I am IN.

This is the news we've been praying for!  The upside of this trial is that they are seeing amazing results.  Patients are seeing their liver damage REVERSED.  Other patients have seen years of stability.  This all sounds incredible to me!  
But is it too good to be true? 

There is the chance I will receive placebo. If I do receive the drug, there may be many side effects to deal with.  And then there's this report from the FDA of 19 people who have died on this drug. 

Overall I feel good.  I am pain free and my new clinical trial team knows how important my work and being highly productive means to me!   So I think this is really great news overall and I will keep you updated.

She looks nice today. His shirt is terrible. That movie star looks fat she should exercise more.
That singer is too skinny.  The world we live in is one where people are paid to judge other people’s looks and talents and the general public watches and judges along.
 
It happens to those of us who are living with chronic illness too.
 
You don’t look sick.  It takes almost all my energy to not look sick.
You're so strong you’ll beat this.  How do you know? I’m scared shitless that I won't.
You’re a ninja, a survivor! I’m barely holding on somedays and don’t feel like either of those.
You need to exercise. Every muscle and joint in my body hurts. Golds Gym is not an option.
Eat organic and gluten free. Sure if you buy it for me (expensive!) and cook something that tastes like food.  Most days I’m too tired to cook anything at all.
Be positive! Attitude is everything.  No. Great specialists and treatments is everything. When you say that I feel like you are dismissing how much I’m going through.
You’re an inspiration.  I don’t have any idea what I’m doing. I’m just surviving the best I can.
 
Let’s stop labels and putting people in boxes.  While I may feel like a rockin’ ninja one day, I may feel like a wounded puppy the next.  That’s how my disease works. 
 
And while my life and how I handle my disease inspires you, Rather than call me an ‘inspiration’, I’d rather be called your ‘friend’.

​

You don’t look sick- is something people say to me- alot.  Thank you. 
Want to know a secret? It look twice as long as it used to for me to shower/bathe, do my hair and put on my shoes.  Every bit of my energy is accounted for. There is a hierarchy of must dos on my daily list.  Anything related to my kids and anything related to my job comes first.  Then I’m simply exhausted.  It’s maddening to me because my mind races with all the things I want to do that I simply cannot do the way I used to do.  My full-throttle is now three-quarter speed.
 
There are days that I work with my hair in a ponytail and wear yoga pants two days in a row.  There are days that my feet feel like I’m walking on razor blades.  There are days that my head throbs and my body feels like I’ve been hit by a truck, my hands get so swollen that I can’t take off my wedding ring or even type on a keyboard.  But I keep going.
 
The other day I used my disability parking placard for the first time.  A heavy-set lady gave me the side-eye and I just smiled at her.  I know she was judging me.
No, I may not look sick, but I am.  Reserving the energy (and pain) it takes to walk a long parking lot with an armful of groceries will help me accomplish all the other things you do that you take for granted.
 
Looks can be deceiving.  What I want people to know about me (and all chronically ill people) is that I will have good days and not so good days.  I may look amazing one day and like a homeless woman the next.  That's just my life.  And not "looking sick" helps me to feel better about myself and hang onto some normalcy.
 
Rather than tell someone with a chronic disease that they “don’t look sick”, how about asking if there is anything you can do to help, words of encouragement or a gentle hug.

I like invitations to hang out, eat a meal, or watch a movie!
​xoxo