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.


Complications

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March 9, 2016 IVIG (hopeful)

If you follow me on Instagram or if you are a personal friend then you know that 10 days ago my world imploded. And with the collapse of my health, so went the ground from under us. At least that is how it felt.

It was was ugly, profoundly painful, frightening and sad.

Wednesday, March 9th, I had an infusion called an IVIG treatment. Simply, IVIG is an intravenous method of boosting a patient’s immune system with a mixture of plasma from mass donors.

It works for wonders for many people, several of whom I know.

However, when it goes wrong, it can go very wrong. And that is what happened with me.

I got the treatment because my immune system is severely suppressed. Our immune systems are made up of different types of cells and antibodies. Most people understand that White Blood Cells (WBC) are part of our immune system. In my case, my WBC have not always been reliable because of the leukemia. Now that the leukemia is in remission my WBC count is healthy so that part of my immune system is working well.

Another critical part of our immune system consists of antibodies which fight off infections and viruses. Two of these are Immunoglobulin G (IGG) and Immunoglobulin A (IGA). My IGG level is 386 (normal levels are 694-1618) and my IGA is 36 (normal is 81-463).

That part of my immune system is terribly low and it is why I was unable to fight off the respiratory infection from November through January.

The chemotherapy I take is doing it’s job by keeping leukemia in remission. Unfortunately, it has wiped out my immune system and left me wide open to viruses and infections. For this reason, even though I am back in remission, I usually have to stay at home to avoid germs.

I have been home for the majority of the past 1-1/2 years and I am lonely. You would be too.

One way that people with suppressed IGG levels thrive is by boosting their immune systems through IVIG treatments.

My oncologist was reluctant to try IVIG with me because she was concerned that I would have a severe reaction. However, now that I am in remission from leukemia, I have started to re-enter the community. With my re-entry, I have occasionally had the initial symptoms of respiratory illness again. Recently, when I became symptomatic, my oncologist decided that we needed to try the IVIG.

Going into the procedure I knew that I was at risk for complications because I have a history of migraines.

According to the site nufactor.com, “serious side effects can include acute renal failure, thrombosis, Stevens-Johnson syndrome, serum sickness, aseptic meningitis and anaphylaxis. ***The most severe form of IG-related headache comes from aseptic meningitis, and in fact, patients with a history of migraines appear to be more susceptible to aseptic meningitis. Symptoms, which are severe and similar to meningitis, usually begin a few hours after treatment but can occur up to two days later. They can include severe headache, photo sensitivity, chills, nausea, vomiting, fever and painful eye movement***.”

I hoped and prayed that I would not have adverse effects. However, over the past 15+ years I have learned that God’s answers to my prayers are not always the responses I wish for; nor do they typically play out on my timeline.

Frankly, I don’t understand (fade to me crying)…

The morning of my infusion, my oncologist gave me a prescription for pain medication just in case I started to feel poorly. 24 hours later, not only did I feel poorly, I became wicked sick with the severe side effects of serum sickness.

I was working via telepractice and my headache escalated into a pulsating migraine. The pain was so intense that I was unable to formulate thoughts, words or sentences.

I cancelled my last client. I took Imitrex, pain medication, antihistamine, nausea medication. I lay on our bed with my head on ice packs. My lips began to swell, my eyes turned a glassy shade of shade of pink. Light felt like sharp glass causing me to squint and ultimately close my eyes altogether. My body shook with a low grade fever. My were neck and back were immobilized by pain. By the time I realized that this was more than a migraine, the office of my oncologist was closed.

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March 10th (Serum Sickness)

 

When I called the cancer center, the paging operator put me through to the oncologist on call. Gratefully he knew exactly what was happening to me. With a calm and compassionate tone, he directed me to go to the ER where he was working that night. I was to tell the ER staff to page him and he would give them instructions on how to treat me; he would tell them how to make the horrific reaction stop.

My husband drove me to the ER where we stood in a long registration line and were told that there would be a 3-1/2 to 5 hour wait. I was in a 9/10 level of pain.

When you are in that much pain, you don’t care what you look or sound like. Due to my medical history, I have been at that pain level more than once; the response is primal.

I held my head in my hands and sobbed, I rocked back and forth, I prayed nonsensically, I begged for help, I clawed at my hair and at my husband.

Since my chief complaint was severe headache, a nurse did look at me while we were in the registration line; he checked my facial symmetry to rule out signs of a stroke. I begged him to page the oncologist as I had been instructed. He brought me a wheelchair and reminded us that there was a 3-1/2 to 5 hour wait. There was no acknowledgment of my plea for him to page the oncologist.

When we checked in, tears streaming down my face, I asked the woman at the registration desk to please page the oncologist. With no response to my mention of the oncologist, she told us that there was a 3-1/2 to 5 hour wait. My husband wheeled me to a remote corner where I continued to claw and sob and pray and rock. The pain was horrific.

This was not my worst ER experience. I have been through so much worse, specifically with Crohn’s disease. But the fact that I have been through worse does not diminish that what I went through 10 days ago was almost too much to bear and I feel defeated.

Because I have been both a healthcare provider and a patient for the majority of my adult life I am a forgiving patient. The past 20 years have taught me that even under the best circumstances things can go wrong in the hospital; I have been on both sides of that coin. There are things that went very wrong 15 years ago when I got Crohn’s disease, 9 years ago when I got leukemia and last Thursday night when I had a serum sickness reaction to an infusion that could have sent me into shock or death.

From the moment we got to the ER, I followed directions and told all staff we encountered to page the oncologist on call. After telling 5 people, one nurse finally heard me. She was not even my nurse. She was the nurse who had been sent to me after my first nurse could not get my veins to thread around an IV needle. For various reasons veins will blow out, roll and refuse to thread. This is frustrating for nurses as they need to get IV’s into their patients so they can get labs, fluids and medications started. Thursday night, I was dehydrated and my already small veins, which have been scarred from years of IV’s, refused to cooperate for the first nurse.

I have been through all of this so many times over the past 15 years. During some hospitalizations, my veins have been so worn out that I have been reserved for the IV team; their job is to find veins in the most complicated patients. I know what it is like to have a line inserted into my heart because all the other veins just won’t behave adequately anymore.  And I know what it is like to have a nurse in an ER dig through bleeding skin in a search of veins that refuse to thread despite my desperate pleas to stop.

Understandably, my nurse was stressed; it was a long and  hectic night in the ER. But in her pursuit of my veins, I felt like she forgot that there was an actual person attached to the bleeding arms in her hands. Her level of annoyance with my veins with palpable. She finally left the room in what was later described by another staff member as a mess: needles on the counters, blood on my arms and the sheets. I felt stripped of dignity.

Something that is very hard about being a patient is that when your body is not working correctly, when you are the source of frustration, you feel guilty. Regardless of how much pain you are in, you still feel responsible for the stress of everyone around you.

That nurse did however send a more experienced nurse to my bedside who sat calmly with me. The second nurse spoke in a soothing voice. My veins relaxed for her and she threaded one without pointlessly shredding skin. She cleaned the blood that the other nurse had left behind. I told her about the oncologist on call and she expressed anger when she learned that nobody had paged him. She stepped outside the curtain of my ER room and we heard her page the oncologist. Within minutes, he returned her page and she came back to my room with a plan.

That night, I watched my heart-rate escalate from the 60’s through the 70’s, 80’s, into the 90’s and occasionally drop down to the 40’s. While I was not the most complicated patient in the ER, I was in distress. Even though the staff knew that I was having a serious reaction to an infusion and they followed the protocol provided by the oncologist, they continued to speak to me as a migraine patient because I have a history of migraines.

My husband found sheets for me, he stroked my head. He gave me ice chips. He rubbed my neck.

Some relief came late that night when the oncologist’s protocol was put into practice: IV steroids and pain medication. Even with the protocol, I left the ER in a 5/9 level of pain but that was certainly better than a 9/10. More than anything, I was terrified that the medication would wear off and the the 9/10 pain level would return.

The doctor sent me home with a prescription for oral prednisone which I took with antihistamine and pain medication for a few days.

I slept hard the first 2 days after my ER visit. My face was white and swollen. My sleep was fitful and I was drenched in sweat. It was the type of sleep that accompanies the breaking of fever. I remember my phone ringing, texts coming through; everything sounded so far away and I was too exhausted to respond.

When I finally did begin to wake up, my heart cracked wide open in sadness. My oncologist had called me and explained that I had Serum Sickness.

“Serum sickness is a reaction that is similar to an allergy. The immune system reacts to medications that contain proteins used to treat immune conditions. Or it can react to antiserum, the liquid part of blood that contains antibodies given to a person to help protect them against germs or poisonous substances.” –Medline Plus

Serum sickness can cause a person to go into anaphylactic shock, it can cause death. It is a serious complication and I will not be able to have this treatment again.

Everyone has really hard times and I know that my personal tragedy just that: my personal tragedy. I also know that I have got to move forward however I am having a very hard time doing it this time.

Five days after my ER trip I turned 44. This has been a difficult birthday for me. I am trying to make peace with the reality that despite my efforts to be healthy, I have been sick for many of my adult years.

15 years ago I had a profound onset of Crohn’s disease. I remember the hospitalizations and pain and procedures. I remember mustering courage and praying and sleeping with a Bible in my bed.

I was told that I was fortunate because I was getting my “thing” out of the way early; people told me that everyone has a “thing” (crisis) and I was getting mine as a young adult which would leave me with a long and healthy life. I took hope in that. I held onto the idea that there would be years of health ahead of me.

And there have been short bouts of normalcy but for the most part, I have been in a battle for health ever since I got Crohn’s 15 years ago.

And I am tired.

Writing usually helps me sort through my emotions and I typically end my blog posts in gratitude or even with an inspirational thought. But I can’t seem to find it this time. Instead, all I can think to do is to ask you to please pray for me. I am so tired.  Thank you.

 


Instagram for Support: Tips for Finding Your Healing Community

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Monday my number of Instagram followers went over 1,000. That made me pause and reflect on where I was when I started this account and where I am today.

I started the account last May. At the time I was recovering from a leukemia relapse, I was on a new diet to help my immune system and my spirit was absolutely crushed. Last year’s relapse coupled with the difficulties I had on my new chemotherapy had beaten me harshly.

Despite an amazing amount of love from my husband, family and some treasured friends, I felt gravely alone.

In order to survive, I knew that I needed to connect with people who understood what I was experiencing and feeling.

Instagram is a social media platform, it is a gathering place online. I understood that I could use the hashtag symbol to find people who use Instagram with similar interests as mine. I also understood that friends on my personal Instagram account would not understand my posts about food and health all day, every day. I would not understand either, had I never gotten so sick.

However, when you live with illnesses such as Crohn’s disease, leukemia and chronic migraines it kind of makes sense that your Instagram posts will include a lot of celebratory moments and strategies that you use to overcome daily hurtles.

By creating a separate account dedicated to my health, I created an environment where I could share those images with people who also really understand the awesomeness that comes from learning how to beat an illness.

I named my health-related account after my blog and began to connect with people who follow healing diets to improve autoimmune conditions, I learned how to cook nutrient-dense meals, I met other cancer survivors with similar stories as mine and I have many other people who battle migraines.

Everyday I learn new tips for staying healthy while living with the chronic conditions. Likewise, I have been able to share lessons that I gleaned from the past two decades.

My Instagram community has made me feel loved and accepted, not judged.

Healing comes through community.

And the courage to fight cruel disease can be sparked by compassionate words such as “me too, I understand, this is what helped me”.

As funny as it sounds, God used Instagram to heal my broken heart. Today I am strong again. I am filled with passion for life and I cherish my Instagram community.

I encourage anyone who struggles with illness to search Instagram for possible support and education. You simply type the name of illness, side effects, special diet, etc. directly after the hashtag symbol. Examples include: #Crohns, #PaleoForCrohns #MigraineWarrior #LeukemiaSurvivor and of course, one of my favorites, #GratititudeAttitude.

#Peace #Love #Heal


Remission from Leukemia

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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 ❤

 

 

 


Today, Right now, Memories from Music

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Me – a long time ago 🙂

I am sitting outside on our screened porch, writing, and listening to some of my favorite songs from over the years.

At 43, I have to say that my favorite decade for music is the 1990’s. For me it brings with it whimsical memories of graduate school, my first job, crushes and first loves.

The 1990’s were my decade to be a young, successful adult with many carefree days. I had not gotten sick yet and I am so grateful that I got to have that decade.

…And, come on–the music of the 90’s is ~Amazing~

If you are not my age and don’t know the band Better than Ezra…here is a taste (I must have listened to this song over a million times 17 or 18 years ago!) 🙂

 


Dealing with Depression

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Photo credit: iStockphotos

Depression is not something that I often discuss because, honestly–I am not really comfortable sharing that part of my life (yes, there are parts that I keep private).

That being said, depression is real and I have battled it.

The other day I read a tragic story about Madison Holleran, a beautiful 19 year old student at Penn State who took her own life. From the outside, she seemed to have it all–beauty, athleticism, brains and a charming personality. Her family noticed that the “fun/happy” part of her personality changed and seemed to be vacant when she was home for the holiday season before her suicide. They talked with her and got her started with therapy.

There is a video in the article that I linked above which tells her story. 

Depression and migraines are connected. From the scientific angle, migraines alter the way that our brains can access and use serotonin. Serotonin is the neurotransmitter which is primarily involved in regulating our happiness/sadness levels. Add to that, the total isolation and pain of a migraine and it is easy to understand how depression is connected (this is a super simplified explanation–there is so much more to it).

In my experience, migraines + crohn’s + leukemia have brought times of sorrow that are way beyond a person’s ability to just cope.

I try to do the “right things” to keep my mental health in check. However, there have been times when no amount of journaling, praying, choosing joy, exercising, healthy eating, practicing gratitude, socializing, etc have worked. Those are the times that I have needed to see a specialist. And there is nothing wrong with that.

When I read about Madison Holleran, my heart broke because I wish that everyone felt like it is “ok to not be ok”.

Could that have prevented her suicide? There is no way to answer that question.

As much as society is trying to accept the reality that people struggle with mental illness in the same way that they struggle with physical illness–it is still very difficult for people to process. I think that is because people who do not have depression feel sadness, even extraordinary sadness at times so they don’t understand how depression is different.

And that is not their fault, until I first experienced it, I was the same way.

Depression goes from sadness to a numbness which seems inescapable because it alters the neurotransmitters, which alters the ability to think through options.

Thus, when a person is showing signs of depression or any mental instability, it is important to get them to a professional (psychiatrists are usually a better option than primary care docs because it is easy to be misdiagnosed, put on the wrong medication).

That being said, this morning I read this article which provides 31 tips for making life a little easier when you are depressed.

Again, this won’t solve true depression–a person who is truly depressed needs medical attention to get those neurotransmitters stabilized. 

But this is a great list for someone who is slightly depressed, sad or even coming through treatment for depression.