How to Stop Our Fear-Based Stories and Improve Our Life Experiences

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Lake Michigan with my Wisconsin-native hubby

I first learned about metacognition in the early 90’s when I was in graduate school at The University of North Carolina – Chapel Hill. My master’s degree is in Speech-Language Pathology which means that in addition to learning about speech and language, I have studied cognitive (thinking) skills extensively.

Metacognition is the ability to think about what we are thinking about. It is the high-level thinking skill which allows us to be aware our thoughts. Originally this was deemed a human skill but there are some other animals who show signs of metacognition.

My ability to think about what I am thinking about became a large part of my hope and healing last summer/fall. I was quite sick and felt extremely discouraged after nearly 17 years of dealing with crohn’s disease, chronic migraines, leukemia and now immunodeficiency due to chemotherapy.

Because I am allergic to the medical treatment for immunodeficiency, I am left piecing together good hygiene with what has felt to be a very limited amount of immune-boosting agents in an attempt to protect myself from infections, viruses, and even common bacteria.

This is not something I ever imagined would be my life experience. I never anticipated that I would beat cancer only to have a future that can feel bleak and hemmed in by isolation due to immunodeficiency. The chemotherapy I take put leukemia into remission, but I have to stay on it to stay in remission. With leukemia back in remission, I feel great. However, loneliness, repeat infections and a complete upheaval from regular socialization left me grief stricken and fearful from 2015-2017.

It is scary to have a paper thin immune system with nothing sizeable to provide backup support other than my faith in a healing God. I feel like I am falling backward with nobody there to catch me. In addition, my body does not fight incoming germs with typical defense mechanisms such as fevers. This means that I can be getting very sick without the symptoms until I am severely infected.

This is both physically miserable and frankly terrifying.

Last summer I found The Work of Byron Katie. Through her work, I came to understand that much of our life experience is not the actual events that occur in our day but it is how we perceive things to be happening.  According to Katie, our minds create stories based on past experiences and emotions combined with future expectations. And if we are not cognizant of our thought process those stories can be daunting during times of duress.

Katie proposes that we create stories in our mind by marrying the memories and emotions of our past with what we imagine to be our future. These thoughts pull us out of the present moment into an experience that is emotionally charged and filled with images that are not our current reality.

Neuroscientist Dr. Joe Dispenza explains that during stressful times our minds create images of our future in the worst possible outcome as a survival mechanism. This is a subconscious method in which our mind attempts to keep us alive, by preparing for the worst. However in reality most of those worst case scenarios never happen.

Last summer I was too sick to take healing walks through nature so I literally wrapped blankets around myself and shuffled back and forth on our back porch soaking up healing rays of vitamin D. I listened to Byron Katie for hours each day and learned how to stop the scary thoughts that bound me.

Over the past 17 years, I have gone through horrifying experiences because of health crises. These experiences provide me a with a very strong, emotionally charged past. That combined with future images of the worst possible outcome sets me up for my mind to create some profoundly sad and frightening thoughts about my life experience.

I reached a new level of hope and peace when I learned how to stop letting my thoughts race back and forth between the past and possible future events; when I learned how to live in the present moment. This required me to first practice metacognition — to think about what I am thinking about. I then went through exercises to stop the past/future thoughts and stay in the present moment.

Since then my fear and grief levels have largely subsided leaving hope and joy in their place.

You don’t have to have immunodeficiency or even leukemia to experience the scary thoughts. You just have to be human, this is what we tend to do unless we teach our minds to stay in the present moment.

I have learned a lot through illness over the years. This is a lesson I wish I had learned before I ever got sick. You can apply these strategies to finance, work, relationships in addition to health and experience a much more peaceful, positive life experience.

“God designed humans to observe our own thoughts, catch those that are bad, and get rid of them.”  

–Dr. Caroline Leaf

 


Kicking off 2018: Happy, Healthy & Resilient

“Even if happiness forgets you a little bit, never completely forget about it.”

– Jacques Prevert

Christmas Day 2017

Christmas Day 2017: Happy, Healthy and Resilient

It is early January and we are wrapping up a dazzling holiday season. For the first time in 4 years I was completely healthy; we were able to go to parties, dine out and even travel.

2014-2017 were almost unbearable. I was home more than 80% of the time fighting leukemia and then immunodeficiency.The days were long and family bolstered my heavy heart reminding me that better times were ahead.

During a time when it seemed that happiness had forgotten me in a much bigger, more agonizing way than ever before, my family refused to let me to forget happiness. 

The silver lining of life’s hard times is that we learn so much through them. 2014-2017 were rife with lessons that I have yet to fully unpack.

One of the fundamental lessons the recent years taught me is the role of mindset in determining our life experience. 

Going into 2014, I thought I understood mindset…

It seemed that years of hospitalizations and procedures for crohn’s disease and leukemia had taught me how to focus my thoughts, how to foster hope when circumstances looked bleak.

I never imagined that I would beat cancer and then be constrained to stay home for years because my immune system was deficient from chemotherapy. Outside of a miracle I will be on that chemotherapy for the rest of my life. To make the situation more dire, I am highly allergicto the only medical treatment available for this type of immunodeficiency.

I have felt completely hopeless and trapped.

Neurologists, psychologists and other specialists who study cognition estimate that between 75-95% of our thoughts are repetitive and that 80-90% of our thoughts are negative. These statistics include everyone; as in people who are out and about in society with all of its distractions. Being at home, feeling profoundly isolated, has demanded that I create systems to take my thoughts captive, to practice mindfulness so that I can move forward and heal instead of staying stuck in sadness.

In addition to developing mindfulness skills, I have become much more attuned to what my body is asking of me and honoring its requests.

I am aware that my body is at a turning point, I can sense that 2018 will be a year of change and that miracles are ahead for me.

I am equally aware that of the role I play in creating space for healing to take place. I am releasing some activities to immerse myself in actives that directly boost my immune system.

The biggest thing that I am letting go of is the Beautycounter business I had for the past 1-1/2 years. I am deeply honored that people believed in me enough to support my business. If you are one of those people, thank you from the bottom of my heart.

I recognize that it is time for me to direct the energy I was using to run that business toward boosting my immune system.

A handful of the actions I take to boost my immune system (some of these are already in practice and some are new)

  • Cooking nutrient dense meals
  • Take EnteraGam — a prescription medical food supplying me with Immunoglobulins (more in a future post)
  • Writing daily
  • Daily exercise
  • Increase social opportunities in small groups or outside (less germ exposure)
  • No screen time 1-2 hours before bed
  • Daily positive podcasts
  • Less time on Facebook because I am spending more time on Instagram(I limit the amount of time I spend on social media)
  • Read more books and less mindless scrolling through social media or emails
  • Currently going through Dr. Caroline Leaf’sSwitch On Your Brain: The Key to Peak Happiness, Thinking, and Health and will do other mindfulness exercises this year

I thought you might enjoy a quick glance at the pictures below. God has brought me through so much these past few years.

Thank you for the support you have given me these past 3 years. It has been intense and I am not sure I could have made it through without you.

I wish each of you a Happy and Healthy New Year

bone marrow room

 

January 10, 2015: the 6th of 7 bone marrow biopsies/aspirations I have had. This was the most painful and traumatic of the 7. It was a crushing day. I later found out that leukemia had relapse.

 

bronchoscopy january 2015

 

 

 

January 18, 2016: After a prolonged, severe respiratory infection I had a bronchospy to rule out some scary stuff. This was such a sad time.

 

January 4, 2017

January 4, 2017 I was officially diagnosed with Immunodeficiency from chemotherapy. Life Altering and crushing.

 

Christmas at Fishers Perdido Key 2017

Happy, Healthy and Resilient the Hubs and I got to travel to the beach during Christmas of 2017!


Sometimes God Really Does Speak…

 

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I focused on BETTER DAYS when I was sick like our wedding anniversary at the North GA Wineries

 

I woke up early Thanksgiving morning and wrote a blog post giving thanks to God for healing me. Later that day I started to feel chilled and crummy.  Really? Really God?

Friday we were supposed to have my husband’s kids and grand kids over to celebrate Thanksgiving; instead I donned a hospital mask and The Hubs and I headed to urgent care.

My heart was on the floor

During the month of October I consistently wore hospital masks when I went out in public to protect myself against the bugs because I have developed immunodeficiency from chemotherapy.

 

Mask

NOT my favorite look

 

Yet despite the precautions I took, there we sat. If this had been an isolated event my spirit would not have been crushed but I have been in and out of hospitals and ER’s for 16 years.

The past few weeks were a blur of blue lips, inhalers, antibiotics, steroids and sleeping with my Bible in my bed. It was incredibly difficult to breathe and I wondered if this was the end of my journey.

My husband, parents and sister’s family poured life giving words over me. I forced myself to press into gratitude for seemingly small things: the soft blanket my sister gave me 2 years ago, the pretty trees outside our window, our dog, our peaceful home, my family’s unconditional love.

One night I threw a magnificent pity party for myself. I sat in our bed with my journal and Bible in my lap, tears streaming down my face and cried out to God. And this time I heard His voice in reply. It was not an audible voice but it was clear and spoke directly to my heart, not the words I would have picked.

I cried something along the woeful lines of “all these years my friends have grown families and careers and the only thing that has been consistent in my life is that I have been sick for 16 years”...

I heard “And I have been there”.

I got quiet because, well I wanted to wallow in pity and what do you say when you hear that truth bomb?

I was like “well yes, but still…”

I heard “And your family has been there” “And you have had shelter”.

I smiled faintly and said, “OK. You win”.

Then I curled up with my Bible and went to sleep.

It was not smooth sailing after that night. In fact the weeks were riddled with complication and heartbreak as I crawled through mud to regain health.

I often think of those words God gave me that night to calm my broken heart. Immunodeficiency with no end in sight does not seem fair and it can feel frightening. But those words were peaceful, true and gentle in the midst of my distress.

My goal was to be well by Christmas and I am happy to say that I will meet that goal. I am also believing big for miracles in 2018.

*For the record — the past 16 years have actually been filled with incredible experiences. Yes illness has been a part of my story, but not all of it.

“Call upon Me in your day of trouble; I shall rescue you, and you will honor Me.”

–Psalm 50:15

 


A Thanksgiving Miracle

fall-walk

It is Thanksgiving morning. I woke early and padded out of our bedroom quietly in hopes of writing before my early rising Hubs wakes because today is my very favorite.

Thanksgiving is the day when all the things, the leaves, the foods, the home decor are gold, orange, warm and glowy. 

There are 2 nights in my life when God has healed me. No I did not recover completely but He touched me. There was a shift in which I went from severe pain to no pain, from being unable to eat regular food to being able to eat solids. Both of these preceded Thanksgiving.

The medical term for what I experienced is “Spontaneous Remission”, I call it a miracle.

I realize that not everyone who reads my blog believes in God but I hope that as you read this post you might open your thoughts to the idea that there is something bigger out there because what I experienced is real. Plain and simple, these things happened. And to be honest, that reality gives us hope in a messy broken world.

In both cases I was so far beyond what I could handle. In both cases I cried out to God with a completely shattered heart. In fact, in both instances I was so far past my limit that I felt He had forgotten me.

The first time I was 29. I had spent the majority of that summer in the hospital due to a profound onset of Crohn’s disease. I was brave that summer and believed big for healing in the face of excruciating pain. I was fed through a line in my heart and all the days were lonely.

I frequently sat alone at midnight in the cold sterile hospital room, journal in hand trying to make sense of my unthinkable situation. One night I sat with my Bible and journal in sheer heartbreak. I cried out in grief to God. I told Him that I was absolutely at the end, I could go no further, that I needed something, some sign that He cared.

That night a nurse I did not know came into my room and asked if she could pray for me. I collapsed into her arms in tears as she prayed over me. The next morning the nurse was gone and my body felt different. I knew I had been touched by God overnight. For the first time in months I was not in horrific pain. To make that morning even more abnormal, my doctor discharged me home. 

My recent experience with the healing touch of God is similar. I have been fighting a Crohn’s flare since September. The months have been dark, shrouded in pain and hopelessness. My family and I have been back and forth to specialists and hospitals. We frequently wondered if I was going to be admitted.

About a week ago I curled up in our bed with my Bible and journal. I have been acutley aware of how abnormal my past 16 years have been due to ongoing illness and I have felt a mix of humiliation, loss and anger.

The other night I told God that for the first time in my 16 year quest for healing I could feel myself growing bitter and I don’t want that to happen. I begged God for some sign that He sees me, that He has some plan for my life and then I curled up and went to sleep with my Bible in my arms.

The next morning I woke up and my body felt different; I was no longer in pain. As I made our bed my thoughts drifted back to the night when God touched me in 2001. That same peace washed over me and I knew it had happened again. As the morning progressed I found that I was able to eat solid food for the first time in a couple of months and I have been on a steady trajectory forward ever since that night.

Some years the holidays are extra glowy. Today my family will gather and we will have that same feeling we had on Thanksgiving in 2001, when everything seems to be falling back together after it all came undone.

If today is a hard day for you a couple of things that are helpful to me:

  • Get outside — force yourself
  • Check out The Work of Byron Katie
  • Keep putting one foot in front of the other, no matter how hard it is, force yourself
  • Distract yourself with fluffy “feel good” movies or books because this hard time will pass you just need to get through it
  • Every day find 1 thing to be thankful for — even if it is as simple as a blanket

Luke 8:42-47

As Jesus was on his way, the crowds almost crushed him. 

And a woman was there who had been subject to bleeding for twelve years,c but no one could heal her. 

She came up behind him and touched the edge of his cloak, and immediately her bleeding stopped.

“Who touched me?” Jesus asked.

When they all denied it, Peter said, “Master, the people are crowding and pressing against you.”

But Jesus said, “Someone touched me; I know that power has gone out from me.”

Then the woman, seeing that she could not go unnoticed, came trembling and fell at his feet. In the presence of all the people, she told why she had touched him and how she had been instantly healed. 

Then he said to her, “Daughter, your faith has healed you. Go in peace.”


Autoimmune Awareness Month 2017

Before MRI

Before an MRI – jgb

MARCH Is #AutoimmuneAwarenessMonth.
I also turn 45 this March. This picture was taken before one of the numerous MRI’s I have undergone since my Autoimmune journey began in 2001. I have had so many MRIs & CT scans that I lost count years ago.
I’ve had 7 Bone Marrow Biopsies/Aspirations, 1 PET Scan and countless other procedures in the cold, sterile parts of hospitals that most people don’t know exist.
For me, Autoimmune Disease means that when I was 28 I got terribly sick and when I was 29 I landed in the hospital for a prolonged period of time with the diagnosis of Profound Crohn’s Disease and C-Diff.
Autoimmune Disease means getting sick and eventually learning that it does not go away: no matter how strictly you live, nor how strong your faith. There is a hiccup in your immune system.
It means that most people have no clue how many steps I go through daily to live what looks like a normal life and that I will always miss the woman I was who lived without these restrictions.
But it also means the small victories become HUGE Celebrations.
It means that you quickly learn who loves you enough to be there for you when you are rather gross (it’s embarrassing to be gross but sickness does that). However it’s temporary and there are people out there who will still love you on the gross days.
Autoimmune disease means finding a way to live your best life even with scary diagnoses.
It has taken me 16 years. I have a history of Crohn’s, Leukemia, Migraines & Immunodeficiency.
There are days that I run fevers, hurt all over and feel trapped.
But those days have become FEW.
After 16 years of putting together a jigsaw puzzle including pieces God has given me from: Modern Medicine, Epigenetics, Functional Medicine, Real Foods, and a Healing Lifestyle I am finally thriving again.
If you are just beginning your Autoimmune journey it is hard but I encourage you to knock on all the doors because you will slowly find your healing path.

Healing

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An old Family Photo–We are Currently Healing

When I wrote my last blog post I was crushed in spirit. I received so many kind messages and I have been too worn down to reply to most of them but I want you to know that your prayers and messages carry me. Thank you.

It has been one month since I wrote that post. I can barely remember the days between then and now, though they were long and seemed to stretch eternal.

After the serum sickness, I recoiled and became very small, absent, empty. I grieved in a way that is required of us after life deals too much hurt.

The past 15 years have been harsh, at times brutal. And life has been intense since late November/early December 2014 when my case of leukemia relapsed.

In March my oncologist gave me an IVIG treatment to boost my immune system because it is wiped out from chemotherapy.

When I got the treatment, I was actually in a getting better stage. I had returned to work in January; our dog and I were walking an hour a day. I was joining other women for yoga and even barre workout classes. It seemed like we were finally getting back to life.

I had a wicked reaction to the IVIG called serum sickness which you can read about here. It was a horrific set-back.

I felt like someone pummeled me right when I was coming up for air sending me back under the water, wiped out, weary and having to fight the current again in order to survive.

The physical pain of the serum sickness and chemical meningitis was devastating; the night at the ER which went so wrong left me feeling stripped of dignity.

When my oncologist called me the morning after my ER trip, she explained serum sickness and that I won’t be having IVIG again. I slept feverishly and fitfully for a couple of days; when I woke up her words became clear to me and my heart cracked wide open in sadness.

That time period is now blurry and void of details other than the sting I felt in my heart and the shallow breaths that accompany severe sadness. I remember PBS was running an Anne of Green Gables marathon that Sunday and I watched it, recalling younger years spent with my sister and my college girlfriends during what was an uncomplicated stage of life.

I returned to work and focused on survival. I worked and I slept. I had become severely iron deficient and was scheduled for an iron infusion. The anemia made everything that was already so hard, extremely complicated.

It felt as though I had a blindfold around my eyes and was being shoved through a thorn-filled maze.

It hurt, I was exhausted and I knew that the only way through it was to go through it. I put one foot in front of the other and did not think past the moment.

The Sunday before my iron infusion fatigue draped heavily over me; I simply could not stay awake. It was a sunny day and my husband was working in the yard, I wanted to join him because I longed to spend time with him. I also knew it would be good for me to be in the sun.  He found me in the house with defeat stamped across my face. Tears pooled in my eyes while I told him how badly I wanted to be outside with him.

He chose compassion.

He took my hand and guided me to our bedroom where he wrapped me up in my favorite blanket. He told me to rest, to nap, that I would feel better when I woke up and that he would be right outside.

Tears streamed down my cheeks as I watched him through the window until I fell asleep.

This man, who has never been “sick” who does not understand by experience what it feels like to have your body stop working correctly; this man who is not naturally inclined to extreme patience has been immensely generous and patient and loving towards me. His dreams have also been dashed by my health crisis because it impacts everything from our finances to our ability to socialize to what he has had to witness. He has chosen to love me and to stay committed to me. He breathes words of life into me and treats me gently when he could easily allow resentment to build up toward me. But every day he makes the conscious decision to choose love over resentment. I am amazed. 

When I awoke from my nap that Sunday afternoon, I did not feel better, I felt hopeless. I remember standing in our kitchen wondering if all of my good years are over. Then I shook my head and told myself to “stop”. I reminded myself that God has always provided for me. I literally stood in our kitchen and talked to myself “yes, there have been times when I have been in pain and at times it has been profound, but God has always supplied hospitals and medications for me. There have been horrific moments but there has always been an end to those moments”. “There are places in the world where that type of pain relief and medical rescue does not exist. I am grateful that I live in a place where I have been able to have those rescues”.

I expressed gratitude for my husband and his choice to stay faithful to, and supportive of, me during this time which has seemed ruthless.

In my experience, there are stages that are part of healing and I wish I could skip steps and rush through the painful ones but it does not work that way. We have to go through each stage. It is the only way we heal.

I am not crying or grieving anymore. We are laughing again. I am still working full time and my dog and I are taking our daily, one hour walks. I am stretching it out in yoga.

My heart is not yet light again but we are adding play into our lives now that I am medically stable. I know that the light-heartedness will come in time.

I have been through these stages before; it has just been a while since I had to do it. This is not easy.

I recently heard a song that reminded me of the way that God has been with me over the past 15 years. As hard as they have been, He has peppered them with joyful moments too.

The song is really beautiful. I hope it encourages you too, whatever you may be facing.

 


Thanksgiving in Real Life #Gratitude

One year ago my husband and I posed for this picture on Thanksgiving day. What the picture does not reveal is that I was sick and my immediate family was very concerned that I was having a relapse of leukemia.

chris and jessica tgiving 2014

Chris and Jessica Thanksgiving 2014

I was having chronic infections, nose bleeds and I was absolutely exhausted. Out of our desperate wish for me to be healthy, we attributed my fatigue to the fact that my husband and I had moved into our new home the week prior to Thanksgiving.

Even though none of us said the words aloud, we knew that leukemia had found it’s way back into our lives. And no matter how hard I kicked, no matter how hard I cried, no matter how loudly I screamed there was absolutely nothing I could do about it: my body had grown resistant to Gleevec, the chemotherapy which had kept me in remission from 2008-2014. At the time, it felt like God was deaf to our prayers; our hearts were breaking.

In December my oncologist confirmed our concerns. Thankfully my doctors caught the relapse early however I still had symptoms as the leukemia cells became active again. When I went on my new chemotherapy, I seemed to get sicker before I got better due to serious side effects.

This past year required us to be brave.

I can never ever thank my husband enough for the way he treated me during those dark months.

Movies often romanticize illness, producers soften the gross scenes with music and lighting. However, in real life, there is no lovely music or soft filter to make the awful moments less disgusting. They are cold, frightening and isolating. Last year my husband pampered me when I was so sick that I know many people would have walked away.

This year is very different. 

Just the other day, in unison, my husband and I said “last year was a blur”. It was a blur of fevers, fear, feelings of hopelessness, broken hearts, nose bleeds, bone crushing pain, bone marrow biopsies and aspirations, meetings with bone marrow transplant teams. It was scary and it all happened so quickly.

I am officially back in remission now and we are in the process of finding center again after having our lives thrown so far from the middle-point.

This stage also requires brevity and unconditional love. We are navigating our way through the fall-out that comes with a health crisis.

Before I got sick, I spent almost 2 decades working as a speech pathologist, primarily in the medical setting. I routinely counseled couples and families as they went through the stages of acute injury through the stage where my husband and I are now: finding normal again after devastation…

From a professional viewpoint, I understand that this is a hard stage. However, my professional knowledge does not make this current stage any easier. Simply put, my husband and I are currently wading through uncharted waters together. The medical bills are huge, we are still learning what I can and can’t quite do yet and we are trying to recover from a level of stress that was, frankly, unimaginable.

If you follow me on Instagram, Facebook or Twitter then you know that I routinely use hashtags #GratitudeAttitude or #AttitudeOfGratitude. I use these because it is a fundamental, conscious way that I live. My parents taught me to do it when I was young and it has helped me through life’s hardest times.

As tremendous as this year is with my remission, there are many parts of my life that are uncertain right now. Thus, I found myself counting my blessings with intention when I went to bed on Thanksgiving.

This was my list:

  1. Remission and the return of my health
  2. Family
  3. My husband has loved me unconditionally through this messy year
  4. Shelter–I have a place to sleep
  5. God has a plan for my life

I know that if I am practicing intentional gratitude on a holiday when I have every reason in the world to rest easy then there are other people who feel scared, lonely, sick, overwhelmed.

I encourage you to find 1 thing to be grateful for before you go to bed each night. As you begin to notice the beauty around you, your perspective will change. Gratitude is not a cure-all, however it can and will grant courage, joy and success.

What is on your gratitude list this today?


Remission from Leukemia

pumpkin patch

Every fall, when autumn leaves offer warm shades of gold, red and orange, nostalgia drapes over me.

The fall breeze carries memories from shared moments with friends decades ago, as though they happened yesterday. It is with happiness in my heart, not sadness, that I reminisce and feel gratitude that we got to share that moment in time, those days, those belly laughs.

Today has been one of those perfect fall days. Even better it follows a day of wonderful news: yesterday I found out that I am officially in remission from leukemia.

My good news has sunk in slowly and maybe that is the reason that today has felt so completely fabulous, filled with gratitude for all the love that is in my life, and ever has been in my life.

Ironically, the official news of remission has been sitting on my office desk in front of my face for a week. It came in an envelope from the oncologist. The return address on the envelope was, of course, from the hospital. Being that I had a leukemia relapse last year, we get hospital bills by the dozens these days and I just did not feel like opening this one. We typically look over bills during the weekend so I allowed this one to sit on my desk all week.

Yesterday morning I was sipping on some coffee and decided to bite the bullet and open the bill. Instead of a bill, my labs from the oncologist came out with the words “not detected” and the oncologist had drawn a smiley face beside the absence of the leukemia marker 🙂

I stared at the page and tried to make sense of it all:

  1. I put my coffee down
  2. I re-checked the envelope for a bill
  3. No there was no bill, this was merely a lab
  4. I re-read the lab: It was only the report of the Absense of the leukemia marker
  5. The report did read “not detected”
  6. My oncologist did draw a smiley face
  7. I smiled and sat alone in my office and thought about how last year when I got the page that said “detected” it was written in all bold, all capital letters and this time, the letters were not bold, nor capital—-> and I thought that it is a shame because this news is every bit as important
  8. Then I went back to work

Seriously, a bit underwhelming after such a cruel and challenging year of relapse. I think I was just in shock. I felt very happy but I did not call my husband, I did not contact my family, I did not text anyone, I did not post the news. I just sat in silence with my happiness. I never sit with silence (anyone who knows me, or reads this blog, knows that).

But maybe that is where life’s big moments make us act unlike ourselves? Because yesterday’s news, and that moment, was tremendous for me.

I actually did not even mention my remission news to my husband last night when I saw him. The celebration started when I was responding to a friend on an email. She asked how I am doing and I told her, simple as that, it became real. And then I ended the email and I told my husband and he was so happy 🙂

And then this morning I sent a big text to my family and everyone is so happy ❤

And now I am writing the blog post that we all prayed for last year.

And it has almost been a full year.

Last year was unexpected and cruel. At the same time, it was not as cruel as it could have been and I thank God for that. I don’t understand why “bad things happen to good people” and there is that part of me that is now working through survivor’s guilt because there are so many people going through horrific situations right this second.

Last year wrecked me. My 30’s had been a long decade of illness and hospitalizations. My 40’s are new and I did not anticipate a relapse of leukemia at 42. It was not supposed to happen again in my 40’s.

Last year was the 3rd time in the past 14 years that my health has completely crumbled despite my attempts to stay well. And that is a horrible feeling. There is nothing like it, there is no way to describe how it feels to have every “normal” part of life swiped away and it can happen so fast.

When I had leukemia the first time back in 2007, I remember telling my dad “everybody says that thing about how they could walk outside and be hit by a car tomorrow, but they don’t understand what feels like to be so sick that they might actually die”. And I stand by that statement because even now, after being severely ill 3 times in my life, I am starting to forget how fragile all of it felt.

I do know that when I was sick, most of the things that seem important did not matter at all. The things that mattered: Unconditional Love, the ability to be non-judgmental, the ability to be supportive without judgment, the ability to show up, the ability to believe in someone even at their breaking point, the reality that silence hurts more deeply than you can imagine.

I am fiercely proud of the man I married. When we got married 6 years ago, he knew that he was marrying a woman with a history of leukemia and he knew that there was a chance it could relapse. But there is no understanding “potential for relapse” until you are in the middle of it. He loved me through every second and it was ugly, scary, sad, gross. In the movies the producers romanticize illness with music to soften the gross scenes and they show the passage of time in short clips so it is fast; but in real life, there is no romantic music in the background and if anything, the gross moments are so cold and painful that they seem eternal and isolating.

I love him ❤

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I am humbled by the amount of unconditional love and support of my parents give to me and to my husband. I am grateful that God directed our steps to buy a cozy house that is literally around the corner from them a few months before my relapse. My heart is full of love exponential when I think of the meals they brought to us and the prayers they prayed; and for the moments that they showed up here, at our house with strength when they were probably crumbling inside, but they knew I needed to see strength in them. And my heart breaks with love when I think of the many times that they have pleaded with God for their daughter’s life.

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My heart absolutely overflows with love and devotion for my sister and her doe-like eyes. She has always been the one who can sit in silence and listen. I have still-framed memories of us together over the past 14 years during my health battles. Once again, she showed up to listen again with compassion. I also cherish the memory of holding one another’s hands when the nurse drew her blood to find out if she is a match for me should I need a bone marrow transplant (I pray I never do). She is the person I can laugh and cry with, all in one session, the one who totally understands me and loves me. She is my best friend ❤

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I am grateful for my brother-in-law, and with that I pause because he lost his sister to cancer and I often feel a sense of survivor’s guilt that she is not still with us. And I recognized that he has had to work through incredible pain at the loss of her; I am amazed that he has never allowed feelings of jealousy or resentment to accidentally be directed toward me because I think that it would be easy to do that. Instead, he has always reached out in love and joined my sister in supporting me. He is the brother I did not have as a child.

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My heart is filled with love and affection (like a huge heart emoji) for my niece and nephew. They both know that they play a tremendous role in my life. They have had to worry about health crises with people they love entirely too much during their youth. It means so much to me that they know how to show up, hold my hand and give me warm hugs. They know how to pray for me and how to love me and how to trust that I will heal. They know that the very best medicine is to make their Aunt laugh, and they do that ❤

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I am filled with love and gratitude for the way that my aunt, uncle, cousins and grandmother stayed in the fight for me with their prayers, text messages and emails. They have loved me unconditionally through the tough moments, and brought us the gift of laughter and resilience.

I am grateful for the special things that the family I married into did to show support and love for me.

I am grateful for friendships that were rekindled after decades and for new friendships that were formed over the past year.

Thank you so much to every single person who read my story, who prayed for me, who thought of me, who reached out to me. I pray that God pours special blessings out to you for what you did to me.

I once wrote a blog post about the word redemption and how illness has given me a new appreciation for the word because God has repeatedly redeemed what seemed like my world falling apart for something more beautiful.

I like to end my blog posts with songs and I think that the song My Redeemer Lives is appropriate for this post. I am so happy to be in remission.

To New Beginnings ❤

 

 

 


My Redeemer Lives

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Dogwood from our walk yesterday…because we are doing daily walks and I am getting better.

My life was normal, actually it was so much better than normal, until I was 29. I was born into a family where the words “I love you”, “I believe in you” were spoken freely and daily. We believed in each other and supported one another’s dreams. When things went wrong, I had a close knit group to catch me.

I got to go to a big SEC college and I was in all these fun organizations and honor societies. I worked hard but I got to play and laugh really hard too. My college degree is in speech pathology. That profession requires a master’s degree in addition to a college degree. I set my sights on a program in North Carolina and worked diligently to be accepted into it. I came alive in North Carolina. I lived there for almost a decade, after graduate school I got to work at a fabulous medical center.

My 20’s were magical.

When I was 28, I moved back to Georgia because I wanted to be near my family and I had the opportunity to work with patients on a unique brain injury unit. Career wise, it was exciting, I was narrowing my scope of practice. In all other aspects of life, I did not realize what I had let go of until I had moved away from my fun and cool part of the country.

I remember the moment that the reality of my move hit me: I was driving to orientation at my new job. As I drove away from my sassy apartment in the “right” section of this big city, I headed down a famous street and passed fancy landmarks while my eyes pooled with tears. I thought “what have I done? i left all of my friends, i left everything and everyone i loved without thinking about how much i would really miss them…?”

Glossy-eyed, I drove past the fancy landmarks of this big city and went on to my first day at my new job.

I loved being a speech therapist on the brain injury unit, and I loved my patients. It was a challenging position; you can’t imagine how much you and your team bond with a person and their family as you spend days, weeks, months helping them rehabilitate from coma states and back into the world with their new reality, a person who has a brain injury. You grow to love those people and they (ususally) grow to love their team back.

I worked there for 1-1/2 years and then July 3rd, 2001 happened.

On July 3rd I collapsed at work and my colleagues rushed me to the adjacent ER where I was tested, hydrated and sent home. Later that night my father rushed me back to the ER. My intestines were hemorrhaging and my entire body was in excruciating pain.

There were no open rooms in the ER and a nurse was walking through the waiting room checking temperatures to make sure that any patient who needed immediate help was noted. I was curled into a ball, rocking back in forth in agony when she took my temperature. My fever registered at 104.7. She rushed my father and me back to an orthopedic supply room which would serve as our ER room for the night. That night was filled with long hours of scary and painful procedures.

The morning of July the 4th, we were exhausted. I was in a bed in the Transitional Care Unit which is where patients stay until a hospital room becomes available. My father was still by my side and my mother was on her way to the hospital. Suddenly I had a GI doctor. Suddenly I was “strong” because that is what happens when you get really sick or when your world collapses: everyone tells you that you are strong and inspirational (when you don’t feel like you are strong, you don’t even want to be the strong person). You are still you, now you just have more trauma and you must figure out how to get through it.

That morning of the 4th, my GI doctor told us that I had either crohn’s disease or ulcerative colitis. I remember laying in the bed thinking “oh, I won’t be able to eat corn” because I had once known someone who could not eat corn due to colitis. I think I was too sick to process what he was saying when he gave me that diagnosis. I did not connect the dots that he was giving me a name for my new reality.

I was in the hospital for the majority of that summer and early fall. Day after day, I lay in that hospital bed wondering when I would start to feel better, when I would get to go home.

I began to understand what my new reality involved and it was very scary.

My life had literally been turned upside down overnight.  That summer, the doctors had to insert a central line IV into my heart to feed me, I had to receive blood transfusions. 911 happened and I spent the following week trying to distract myself from the scary images on the TV in the corner of my hospital room.

I did not want to be in the hospital during a national emergency, I wanted to be at home with my family and my dog.

My friends were getting married and having babies and I was learning to lamaze breathe to get through the pain of crohn’s.

That was the first time it happened…the thought that brought both a brief escape and a lot of sadness as I wondered, “What if I had never moved back to Georgia? What if I had stayed up in North Carolina? I loved my life there, I was healthy there, maybe I never would have gotten sick if I had just stayed there. “

I countered those questions with the comforting thought that, “no, God brought me back just in time because He knew I needed to be near my family when I got sick”.

It took a few years to get better and my awesome family rehabilitated me.

Once I was strong again, I moved to a cute town in South Carolina and fell in love with life again. There are several people who will always be part of my heart, they were such good friends to me. And for a while, I was totally strong and happy and normal. But then I got sick and eventually I got so sick that I had to move back to Georgia. We had no clue what was wrong with me but I had endless fevers, endless nose bleeds, bone pain, upper respiratory infections, I could not stay awake, I was totally not normal for a year.

A couple of months after moving back to Georgia, I was back in the same big hospital that housed me in the early 2000’s. This time around, I met my oncologist and learned that I had leukemia.

Once again, my thoughts drifted back to the decision I made at 28, when I left North Carolina and my entire life flipped upside down. “What if I had never left North Carolina? Maybe I would not have gotten crohns? Maybe I would never have had to take the medicine (that helps crohns but might have caused leukemia)?”

Again, I countered it with “God knew I needed to be close to my family when I got sick, so He got me here in time”.

Recently, my husband and I were back up in North Carolina for a few years. I kid you not, we moved back to Georgia and 7 months later, the leukemia relapsed. And the past 5 months have been very painful (you know all about it if you read this blog).

I cannot tell you how many times my mind drifts to “what if”…that big decision I made when I was 28. At the time, it just seemed like the right thing to do and because up until then, life had come so easily to me, I only saw the positives of the move. I honestly did not think about the negatives of moving away from a place and people I loved so much.

Since I have literally gotten sick (as in crohns disease, leukemia, leukemia relapse) each time I have moved back to Georgia, you can see where it is tempting to fall back on the question of

“what if I had never moved the first time? Could all of this illness have been prevented?”.

I have wrestled that question to the ground a thousand times and of course tears have been shed over the very idea that maybe I could have had a different course if I had chosen differently.

This is why the word redemption is one of my very favorite words ever.

Merriam-Webster defines redeem as “to make (something that is bad, unpleasant, etc.) better or more acceptable”.

Years ago, that word became personal to me. It was one of those times when everything seemed hopeless. I was in the car and had been crying and telling God that I felt like all of this was my fault; that I had made a series of poor choices and that is why I am in the position that I am in.

I turned on the radio and the song “I know my Redeemer Lives” came on and it hit me, the Christian message of redemption became personal. And while the message of eternal life is absolutely glorious and filled with grace, that day redemption became part of my daily walk with God. While I listened to the words of that song,I felt like someone lifted a million pounds off of my shoulders. I was flooded with relief at knowing that even though I do make poor choices at times, He can and does turn them around for me.

So even if that decision to move back to Georgia when I was 28 led to me taking a medication that eventually caused leukemia…He is still my redeemer and He is still turning my situation around in ways that I do not understand.

That song freed me that day. My heart stopped hurting so badly and yes, I still have times when I wonder “what if” but I know more than ever, that regardless of the decisions I have made along the way, my redeemer fixes them for me.

Here is the song, it will bless you. Tomorrow is Easter, it is the day that Christians celebrate the risen Lord.

I know My Redeemer Lives.


Nose Bleeds, Questions about Leukemia and An Amazing Husband

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Chris and Jessica Thanksgiving 2014

 When I started writing this blog, it was because I was dealing with chronic migraines, I needed an outlet. A way to feel like I was in control of them vs. them controlling me.

But today, right this minute, I am not writing about migraines. I am writing about leukemia. Because I am scared and sad and heartbroken. And because all of my life, whenever I feel anything, the only real thing I know to do (other than pray) is to write.

I was diagnosed with leukemia in February 2007 and I have been in remission since 2008. There are multiple types of leukemia. And, you see, the day that the oncologist told me that I had it, he told me over the telephone.

The story is just too long to tell right now. Briefly, before that phone call, I had been hospitalized and he had put me on a chemotherapy protocol.

About a  week after my discharge from the hospital, mom and I saw him in his office, he took me off the chemo and told me that I did not have leukemia; he wished me well and said to get on with life, goodbye. Later that afternoon, mom and I were shopping in Buckhead. I was so skinny and tired, but hey! I did not have cancer. I was wearing one of those black velour Juicy Couture 2 piece sets that are so comfortable. They are not the best thing ever, but they are cute enough to be worn in public without someone accusing you of wearing pajamas (and when you are really sick, being out is a big deal, so the outfit stops mattering all that much). I can’t explain the sensation other than to say it feels a little bit like your nose is running, but it is warm and you just know…you know because you have spent a year (or at least, at that time, I had spent the previous year) bleeding like a faucet from my nose.

Mom looked at me and rushed me to the restroom. For those of you who are not familiar with Atlanta, Buckhead is nice. And people are not gross in Buckhead, and they certainly don’t hang their heads over a public sink and bleed for 20 minutes (unless “she must be on drugs”). My sweet mother says that she knew at that point that, yes, something was really wrong.

A few days later, the phone rang. It was the oncologist. I was standing beside the window in my bedroom and my mother was standing under the door frame watching me talk to him. He told me that there had been a mistake; that a couple of tests had come back and I did have leukemia. I was shaking so hard it looked like I was having a seizure. I was outside of myself scared, unable to stop the shaking; unable to control tears, words, anything. I suspect that most people who have ever been diagnosed with cancer can describe THE moment to you. The oncologist quickly followed his diagnostic statement with “if you were going to choose cancer, you chose lucky” because the type of leukemia I got responds well to treatment (to this day, I intend to write a book and title it “The Lucky Cancer”—classic). He is a very good oncologist and I cannot imagine how hard it must be to tell people of any age that they have cancer but there are some phrases that are just too ironic.

So, I was diagnosed with chronic mylogenous leukemia (CML). Most people do not get that specific type until they are over 60. I got it when I was 34 (one of my college sorority sisters got it that very same year, guess we blew those odds). Another trademark of CML: it comes on slowly; sometimes people do not even know that they have it until their yearly physical reveals a crazy blood cell count. 

Well, that is not how it happened with me. I got very sick the year before I was diagnosed.

It was slow, yes, but it slowly ripped my body and life apart, and it was painful, exhausting, lonely and frightening.

I was living in a tiny town in South Carolina. I Thank God for the 3 people who really loved me. They saved my life, their family members also did by extension. But those 3 people saw me through some very scary moments and honestly kept me alive.

All cancers are scary; and each has different reasons. Being a cancer of the blood, leukemia involves a lot of  blood and bleeding and bruising and really scary, horror film scenes.

When I first started getting sick in 2006, I started getting nose bleeds. Which was odd because I had never been a nose bleed person. In fact, as a child, my little sister would get them so I was jealous (because as children, that is what siblings do, when not playing with one another we competed for mom and dad’s attention). So (please remember I was ~ 7 years old) I would literally hit my nose to try and make it bleed like her nose “could” (again, please remember I was a little child–apparently a competitive one).

Little did I know that life would fly past quickly and a few decades down the road, my wish would come true (more than I wanted it to).

So, until leukemia, I had never been a nose bleed person.

The other thing that was happening was that my thigh and hip bones were aching horribly. Nothing would make them stop hurting. I was working as a speech pathologist for an outpatient rehab clinic and I can remember asking my colleagues if their legs also ached (thinking maybe the floor we stood on was problematic). They would laugh and say “welcome to your 30’s”. I was 33 and I silently thought  “wow, the 30’s are HARD”…..what none of us knew was that my bones were hurting so badly because that is where bone marrow is made, and my bone marrow was procreating at an abnormally fast pace, which was forcing my bones to spread apart–and yes, it hurts, badly.

The other thing that was happening (are you noticing a trend?) I started getting upper respiratory infections that would not end. For a year I mixed those airborne effervescent tablets with water and drank the cocktail daily; like it was just something normal that everyone was supposed to drink daily. I was doing it because I kept getting sick and in the past, those airborne effervescent tablets had shortened my colds. However, 2006 was different. The airborne wasn’t working, I was still getting sick. And when I would end up at the doctor’s office, they would attribute any change in blood counts to a respiratory infection.

The other thing that was happening was that I. Could. Not. Stay. Awake.

That is the thing with a blood cancer, you need blood to have energy; when your counts are off—you cannot imagine utterly exhausted you become.

The doctors diagnosed me with mono and started giving me weekly B-12 shots.

Looking back, of course something was very wrong with me, but at the time, even the doctors could not see it.

I remember one night very well. It was about 2 weeks after Thanksgiving. My parents had come up to visit for the holiday.

I have no idea which night of the week it was, or why it stands out, because by that point I was so sick that every memory is a blur…

No, that is not true, I know why I remember that night. I remember it because it was the first time I verbalized my absolute certainty that something was wrong and I saw the same concern reflected back despite words that argued against mine. One of my 3 lifesavers was at my house. We had gone through another one of my horror film nose bleeds and then cleaned up my face and the bathroom. We went to sit on my couch in front of my fireplace. I lived in an historic home in a tiny town and there was a fire place in every room. We were in the front sitting room. The bricks on the fire place were painted white, it was pretty. I liked my house. But I was so tired, I felt like it had to be at least 1:00 AM and I certainly could not talk or watch TV. However, in real time, it was probably ~ 8:30.

That is when my friend looked at me with eyes that revealed concern. I said “something is wrong with me, like really wrong with me” to which my friend replied “no, you just need some rest”. And that is when I said it “no, you don’t understand. i am so tired, i feel like i need someone else to breathe for me. i don’t feel like i have the energy to keep breathing”. I must have closed my eyes. I do know that my friend helped me get to my bed and then sat in the rocking chair across the room all night, for no other reason, but to make sure I kept breathing throughout the night.

A few weeks later, every material “thing” that was part of me, that I had earned, collected, bought, won, cherished over my single adult years was boxed in storage and I was living (mostly sleeping) at my parent’s house. About 6 weeks later I was admitted into one of Atlanta’s big hospitals unable to stand up, unable to walk. I was throwing up. It seemed like blood was everywhere.

So, today. I had already had 3 nose bleeds by noon.

I started having them about 5-6 weeks ago and they have been bad. If you have ever watched a horror movie and they show a scene with a pale creepy gross ghostly thing bleeding profusely…that’s what I mean by “they have been bad”. They are absolutely terrifying. And my dear husband stands by my side for 15-30 minutes, handing me paper towels (because toilet paper does not absorb this stuff). He holds my hair and says comforting things. And then he cleans my face, my hands, the sink and towels. Somehow, despite all of the complete grossness of it, of me these days, he tells me he loves me and that I am going to be fine; that everything is going to be OK.

Well, at some point this afternoon my dear husband ran out to pick up steaks and firewood so that we could grill out and decorate our Christmas tree this evening. While he was gone, I proceeded to have a 30 minute horror film nose/mouth bleed that literally filled the sink and left me lying on the floor in a pool of blood….

when he got home, that is how he found me…

One way or another, I will be fine. But you tell me if you would not feel afraid, sad, overwhelmed, angry, reminiscent right now? And, at the very same time of year?

Even if this is the “lucky cancer” and even if I a fortunate because I have had a really good life overall. Today. Right now. I feel sorry for myself. I will feel better soon. Writing does that for me. If you read this, please pray that the doctors will figure out what to do, and please pray for my husband. He is a good man. He is taking such good care of me.

Cue…another nose bleed (these things are time consuming)………………..