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:
- 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.
- 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 response. At 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.
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!
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
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.
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.
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.
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.
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.
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.
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.
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
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.
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:
- Remission and the return of my health
- My husband has loved me unconditionally through this messy year
- Shelter–I have a place to sleep
- 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?