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

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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.

 

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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

 


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.

I Am Courageous

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Bulletproof Turmeric Latte — JGB

 

You know that feeling when you are clicking along just fine and someone or something pulls the rug out from under your feet? It is a horrible feeling.

That happened to me at 11:00 this morning and it took all day for me to pick my heart back up off the floor and press forward.

Last week my oncologist checked my immune system. The day I saw her my husband drove me to the appointment because I was curled up in a ball very sick with a stomach virus.

When we entered the patient lobby, I put a mask on so I would not expose the other patients to whatever I had. While waiting to see the doctor I nestled against the Hubs and quietly moaned because that stomach bug was too miserable to be completely silent. Tears pooled in my eyes while I tried so hard to think about anything besides how I felt. Other women who had been sick from chemotherapy brought tissues to me. Assuming I was nauseated from chemo, they tried to comfort me with words of “I have been there sweetie, it gets better”. I so appreciated their kindness, I did. But part of me felt more lonely, more isolated by the fact that I knew I was sick because of immunosuppression from daily chemo that I will probably take the rest of my life.

Since my diagnosis in 2007, I have learned so many things about cancer. A couple of those lessons:

  1. Patients are very kind to one another –> we are all stuck in this together, we hate it and there is a lot of compassion for each other. That incredibly nice and refreshing glimpse at humanity is found in this community.
  2.  Different cancers have different types of treatments. Some people go trough harsh  treatment and they are cured. Other people (people like me) have less harsh treatment but we have to stay on chemo forever and we live in a state of immunosuppression from ongoing chemotherapy.

Last week my oncologist ran a panel to test see how low my immune system is. We already knew it was suppressed because a year ago right now I was severely sick with a drug resistant respiratory infection.

Last March she tried to boost my immune system with an IVIG treatment which is the gold standard treatment for immunosuppression. It usually works wonders for people and lets them live normal lives. Unfortunately I had the rare but very serious serum sickness with chemical meningitis responseAt that point my oncologist told me that IVIG is not an option for me. I cannot take IGG supplements by mouth either. I am too allergic, it is too risky.

So today at 11:00 I opened an email and saw my labs. I saw that my IgG levels are dramatically lower than they were the last time they were drawn.

My levels Are. So. Far. Below. Normal.

I cried. I reacted strongly out of fear. My to-do list dropped and absolutely nothing got done.

I sat in a puddle of tears and allowed my mind go to that worst place. I sent a flurry of texts to my sister, my parents, my husband seeking comfort.

Some of you will read this and criticize me for reacting in fear. I agree, I should have responded better. However, I am a person with all the feelings and at times I break.

While I was waiting for my oncologist to return my call, I made a cup of Bulletproof Turmeric Latte (because I incorporate antiviral turmeric into almost everything these days).

I sat down on our couch and looked out the window. My husband pulled into our driveway and I exhaled. I thought about how grateful I am for this man who has become my rock. God put such a strong man by my side. The Hubs is always steady, even when waves come crashing down in my healing journey.

A nurse from my oncologist’s office called. She was surprised that I had already seen my lab numbers. She argued that was not possible for me to have seen my numbers. I told her they came in an email on my patient portal. She continued to try and argue about the fact that I should not have seen them yet and I told her that none of that mattered, I just wanted some guidance because I felt scared.

I asked if my immune system is going to continue to fall and she said that they don’t think that it will. She said that the numbers today are similar to my numbers a year ago. She said that they they believe this is my new normal.

She told me that I have a condition called Immunodeficiency and I am going to have to learn to live with it.

She went on to explain that “everyone has something: some people have diabetes, some have”…I don’t remember the other examples she listed…

In honesty, I wondered if she had looked at my medical chart because I personally have learned to live with a lot.

The conversation left me feeling like I needed to speak up for myself and my life experience.

As tears streamed down my cheeks, I interrupted her. My voice cracked with heartbreak when I said “I have become quite courageous in my 45 years”.

I asked her what we need to look for, how do I know if my immune system drops further. She gave me guidelines.

So this is where I must practice what I preach. I must walk by faith, dream big, believe for healing. I must look beyond the numbers.

Last year my oncologist told me that most of her other patients who have the same immune count I have are on at least 1 antibiotic per month. I have not had to take any antibiotics since the infection ended last January (a year ago).

She also told me that summer would be my easiest season and fall would be my hardest season. While I did catch viruses this past fall none of them knocked me down severely.

This past fall I started socializing again. I was cautious and picked small groups and I moved forward. We found that for the first time in years my body is strong enough to get over viruses. I am able to use antiviral, nutrient dense foods and juices to nip colds and bugs in the early stage.  In fact, I am healthier than I have been in years. 

So as scary as those numbers are I must look beyond the numbers and walk by faith, speak life, eat nutrient dense foods, drink antiviral juices and focus on health. 

I am well and I am good. Today’s’ news scared me and set me back for a little while. But it was only numbers. Nothing changed.

I am still healthy. I am moving forward. 

 


Happy, Happy Thanksgiving

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Autumn Gold Leaves — JGB

It has been 4 months since my last blog-post.

We celebrate Thanksgiving this week and I am completely healthy.

Two years ago the Hubs and I had just purchased our first house together and I had a leukemia relapse. One year ago I developed a drug-resistant bronchitis/pneumonia which led to a bronchoscopy and a failed IVIG treatment.

Those years blistered with pain and heartache. Each person in our family carried a broken heart. 

This year is different. We are happy, we are healed. We are in a season of goodness and celebration!

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Chris and Jessica Historic Roswell

Last summer I got healthy again and had a very hard time moving forward. I did not know what to do because, what do you do when your life has been thrown so far from center for such a long time? Though it sounds simple, finding yourself and moving forward after life altering crises is actually quite challenging.

In my experience unplugging, taking lots of healing walks, praying, listening to positive podcasts, allowing myself to cry and ask why are necessary steps in moving forward.

When I got sick in 2001 I did not understand any of it. I loved my life prior to illness and I played by the rules. Though I was young and certainly  made immature decisions (aka “mistakes”), I was a compassionate and loving person who had a committed relationship to God. I had worked so hard for a career that was budding in my early 20’s. It made no sense that my world would collapse due to illness.

From the very beginning of my journey I prayed that God would use my story to encourage other people who are hurting. I understood that if my life could turn on a dime so could the lives of millions. I hoped that God would put a purpose to the pain I went through because…well, don’t we all want some purpose to come from the most defining moments of our lives?

15 years later, hurting people are inspired by my story and seek me out for suggestions because they are where I once was. This role brings with it much more weight and humility than I ever imagined it would.

As I type this post I have precious people in my mind who are facing mountains, their world is upside down, their families are hurting. My spirit hurts for them and while I cannot provide perfect words to soothe them I do know that healing happens in baby steps and God is faithful.

3 weeks ago during one of my healing walks, our pup and I came across a bench that took me back to younger years. It looked like a bench I would have spent time at when as a camper or a camp counselor. Then God brought to mind the verse I have clung to through the brilliant and brutal times of my life.

“The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” — Deuteronomy 31:8

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Reflections — JGB

He is always right here with me and during the darkest times He picks me up and holds me extra close.

To those of you who are hurting this Thanksgiving, I pray that you can hold on to the hope that what you are facing today will not last forever. Cling to positive words and find strength in gratitude which has been a healing tool in my life.

You can find most of my writings, recipes and follow along with me as I do my best to live a healing lifestyle at my Instagram account dedicated to The Feel Good Days.

Happy Thanksgiving!


Mourning Has Broken

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Last spring my oncologist predicted that summer would be an easy season for me. While I finalized paperwork from the previous school year I imagined lazy days spent poolside reading novels, kayaking with hubby, cooking yummy meals. I was so excited to get back to writing and blogging.

Yet, before any of the fun could begin I had to come undone. And by undone I mean ugly tears and questions of why.

Over the past 15 years, I have not asked God “why” very many times. But this summer, I sat in puddles of tears and shamelessly cried out for answers.

I have spent 9 of my past 15 years either hospitalized or severely sick with Crohn’s disease or leukemia. That does not include the horrific migraines or striving for mental wellness through these years of adversity.

After an intense 1-1/2 year battle for my health, the first 6 weeks of summer demanded that I heal emotionally.

I took our dog for long walks and slowly found my heartbeat again. I frequently unplugged from social media to still my mind. I limited the amount of news I watched or read because I was too raw to process mass amounts of sadness or fear. I listened to a positive podcast everyday to fill my mind with inspiration and goodness. I talked to confidants and professionals who helped me find a way through the pain, people who could listen without judgment, and gracious they are hard to find but God does supply them.

I have gone through emotional recovery after severe illness multiple times over the past 15 years. You would think I would be a genius at this by now. However, there are some things that I just don’t think we get better at, mourning over loss being one of them.

It hurts horrifically to have illness uproot your life. It is hard to reconcile damages done. I do think the one thing I have gotten better at is recognizing that I am going through stages of healing and that I will come through them but the pain and heartache, the tears remain guttural.

I did not think I would get sick again in my 40’s. The recent leukemia relapse was just as unexpected as the other medical crises that upended my life.

I had hoped my 40’s would be a new decade filled with health.  Relapsing in my early 40’s was such a disappointment. I had hoped for a long stretch of uncomplicated days.

19 months after it all started, I am finally better both physically and emotionally.

A few weeks ago our dog and I were in the kitchen when my husband walked in the door after work. Jackson ran over for a pat on the head and then I hugged hubby tightly. I thanked him for standing with me through the grieving season because it was dark and I know that it required much of him. I told him that the grieving, the mourning, the crying is over.

When we got married 6 years, 10 months ago neither of us anticipated that we would be challenged so early in our marriage. I am incredibly proud of my husband and our marriage. We made it through a fierce storm together. And, by the Grace of God, We are entering a new season.


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.

 


Breathing Easy

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2 weeks ago, flanked by my husband and father, I went to the Pulmonologist. We had an early morning appointment to get the results from my bronchoscopy.

I was braced to hear hard words from the doctor. I had prepared myself to get a sad report and then muster strength, look for the silver lining and find a way to turn it into good news.

The reason I was in that frame of mind is because that is what Crohn’s Disease, Chronic Migraines and Leukemia have forced me to do for the majority of my adult life.

Looking back over the years, I have been courageous.

Tuesday morning, I was granted a pass. The lung specialist came into our room and did what he probably enjoys doing most: he told me that all 11 biopsies revealed healthy lung tissue. Healthy.

I am writing this blog post early on a Saturday morning. Tears spilled over my cheeks as I typed the word: Healthy.

To be fair, part of the reason for the tears is because I am listening to Adele and it is a confirmed fact that Adele makes people cry.

But Come ON:

…after 15+ years of repeatedly being thrown into hospital beds, excruciating pain, Emergency Rooms, scary diagnoses, frightening procedures…

…after cheering friends’ childbirths while trying to make sense of my childless life riddled by words such as “profoundly ill, hemorrhage, too young for this, blood transfusions, stat, cancer, potential complications, no other options”…

…to hear the word: “Healthy”…

Cue Adele, dammit and let your heart explode!

Cry the kind of tears you cry when All that Was Wrong is Suddenly Right, and it may not make sense, but it Just IS.

I have been breathing easily ever since we left the office of the Pulmonologist 2 weeks ago: off all antibiotics, steroids, inhalers.

It is if as the respiratory complications that crushed me from November-January never  happened.

God still works miracles. Most often they don’t seem to match our timeline and in so many ways they don’t even seem fair in this world where too many people suffer horrifically.

However, occasionally, He pulls back the veil and allows us to witness something truly magnificent which goes without explanation. I thank Him for choosing me this time.


Trying to Breathe

 

 

bronchoscopy january 2015

Bronchoscopy January 18, 2016

 

Tears were shed last week. At times, I sounded like a wounded animal and while that is not glamorous, it is real.

I also had moments of brevity and strength and I am proud of myself for those moments; many people would simply not be able to discuss bone marrow transplants and the potential collapse of life as we know it.

I have been extremely sick since early November with antibiotic-resistant bronchitis/pneumonia. In November, I required 4 antibiotics, a breathing treatment and an inhaler to get well. December granted me a brief reprieve from the respiratory infection but I was still fighting for health through the holidays.

On January 2, the respiratory infection came back with a vengeance. It was much worse this time; the antibiotics which worked in November did nothing to clear the January infection. After multiple medication fails, I was placed on a very strong antibiotic, one that clears infections in most people. Even that very strong antibiotic did not do much for me until a steroid pack as well as an inhaler (which also has a steroid) were added.

My past success with immune boosters such as zinc, vitamin C, Oil of Oregano, super-foods, etcetera did not help me.

Last Monday my Oncologist gave me the choice to go to the ER or to her office where she would see me as an emergency work-in.

I have an Awesome Oncologist. She offers a sense of calm even in the worst of situations thus I chose her office, I wanted to see her and hear her peaceful voice. My father drove me to the hospital.

Many vials of blood were drawn so that she could run a myriad of tests. My initial blood-work that was available to her that day perplexed her because other than anemia, my CBC revealed a healthy white blood cell count, red blood cell count, healthy platelets. If the leukemia was back, most likely there would be an abnormality on my CBC. Of course there are much deeper tests to look for leukemia, but from the initial blood-work, it looks like I am still in remission; my chemotherapy is doing it’s job.

My Oncologist decided to send me to a Pulmonologist. She said that she could continue to prescribe antibiotics and chest x-rays but she wanted a lung specialist to look at me.

My father and I went to the waiting room and listened to her receptionist try to make an appointment with one of the lung specialists from the pulmonary group. We learned that their first available appointment was 2 weeks out; my oncologist said something and suddenly I was on their schedule for 8:00 AM the following morning.

Something I have learned over the past 15 years: when you are an emergency case, the doctors will find a slot for you. If they can’t, they will send you to the ER where they will see you and often admit you. We were grateful for the 8:00 AM appointment.

Thankfully, Dad drove me to the appointment with the lung specialist because I only “heard” about 50% of what was said; later my father was able to fill in the blank spaces for my family and me.

We are impressed with the Pulmonologist. He is knowledgeable, skilled, and has an excellent demeanor. He also has the gift of compassion.

There have been so many doctors over the past 15 years. The doctors who have the gift of compassion stand out from the others. It is easy to appreciate a person when they are vibrant, when they have on nice (clean) clothes and look their best but it goes against human nature to express appreciation and respect for a person when they are sick, dressed poorly and completely undone. Compassion is a gift, you can’t teach that to a doctor, they either have it or they don’t.

The Pulmonologist looked at my chest x-ray and the CT scan that was taken last March when I got pneumonia (2 months after being on my new chemotherapy).

He then began to explain something that crushed us. The chemotherapy I take is in a class of drugs which can cause pneumonia.

We had known that. However we thought that it was because it suppressed my immune system. We misunderstood…

I know that I will explain this incorrectly because I still don’t completely understand it. Apparently this drug can cause a chemical pneumonia in which there are little pockets of fluid throughout my lungs caused by a response to the chemotherapy.

My doctor said that the pattern on last March’s CT scan are suggestive of that chemical pneumonia and his concern is further supported by the fact that I did not respond to antibiotics, but did respond to steroids.

If this is the case, I will have to come off of the chemical. In my situation that means that I will have to come off of the chemotherapy that keeps my case of leukemia in remission.

At that point in our conversation, tears spilled over my cheeks and I said, “I would have to have a bone marrow transplant”.

He let me cry. He gave me that dignity. He did not belittle my pain or sadness. In fact, when he went to speak, I saw him swallow his own tears as he steered the conversation in a direction that had order, which is what I needed.

I thought of the many times when I used to work in hospitals and had to deliver hard news to patients and families. I used to watch them crumble and it hurt because, as humans, we share the common thread of understanding pain. I remember swallowing back tears knowing that I had to stay strong so that my patients could look to me for leadership.

My doctor did that for me.

He gave me a few minutes to cry and then gently guided the conversation a few steps away from the transplant topic.

He explained that we will take things 1 step at a time: there would be another chest CT. There would be a bronchoscopy with lung biopsies. The biopsies will reveal what is happening in my lungs. The biopsies will confirm whether or not this is an infection or if it is a response to my chemo.

During the moments in which he explained the next steps, I was able me to gather my emotions.

I nodded my head and verbalized my understanding.

My father said that the doctor made a statement that grabbed his attention. I really don’t remember much of what was said. Apparently the doctor said that his suspicion is that “the reason you have not been getting better is because we have been treating an infection that does not exist”.

We then went back to the potential transplant. At which point I understood that this lung specialist has probably worked with other patients on my chemotherapy, who probably faced my situation. He explained that if I was on a 1st tier drug we would have more options but I am on a 2nd tier and that does not leave many choices.

I took a 1st tier chemotherapy, Gleevec, for years. It kept me in remission for 6-1/2 years. In 2014 my case of Chronic Myelogenous Leukemia mutated and I became resistant to Gleevec. I was transitioned to a 2nd tier chemotherapy, Sprycel, in January 2015.

He explained that there is no way to predict which patients will have lung complications with Sprycel and that it can happen at any time; that it happens immediately for some people, it can happen 1 or 2 years after starting the drug for others.

I was half-way present and I had tears in my eyes but I formed cohesive sentences. I am really proud of myself for the way I gathered my thoughts despite the fact that I was hurting so badly. With a quivering lip, I told him the name of the Bone Marrow Transplant Oncologist who worked with me last year. This Pulmonologist has an excellent working relationship with that doctor. I told him that my sister is a 5/6 match which is considered a “Perfect Match” and he lit up with excitement for me.

I know that he was not truly as happy as he portrayed, because in an ideal world a bone marrow transplant would not be part of our discussion. In an ideal world, I would be successful and accomplished, medical bills would not have robbed me of everything I ever worked for, I would have children. In an ideal  world, I would not be sick and I would not know this doctor.

When he left the room, I tried to talk with my father but we were empty and raw and sad.

From my position on the exam table, I looked out the window. It was one of the coldest days we have had this January. I stared at the leafless, lifeless branches on the trees and thought about how I feel like those brittle, lifeless branches. I felt grey.

Last Wednesday my husband and I spent a long night in the ER. My chemo can cause Pulmonary Embolisms in addition to Pleural Effusions and Pneumonia.The doctors spent the night ruling out reasons to explain why my chest pressure and difficulty breathing had switched to chest pain. In the end, we learned that the pain is because my muscles are so sore from all the congestion and coughing I have done since November.

Monday morning I had my bronchoscopy. It was scary; the Pulmonolgist was wonderful. She too has the gift of compassion. They took 11 biopsies from my lungs.

We will get the results next Tuesday the 26th. This week, I have also been getting results from various tests my Oncologist did. I don’t understand some of the results.

Have you ever had pneumonia? Have you ever had bronchitis or even a bad cold? It is a miserable feeling. I have had it for such a long time that I don’t remember the feeling of breathing easily.

I am tired, my family is tired. We are ready for Tuesday’s appointment because we will learn what is happening and then we will learn what our next step is.

Right now, I am savoring each moment that feels good.