Hurry Up and Wait: Part I

When I was hospitalized for a Crohn’s disease flare in June, an ER doctor interrupted my feverish, dilaudid-induced nap to tell me that my abdominal CT scan had revealed a lung nodule in the bottom of my right lung. When I asked him what it meant, he refused to answer and said, “We are only supposed to let you know that a nodule was found. You need to have a follow-up chest CT in three months to make sure it’s gone.”

And then he was gone, but I was wide awake.

For three months, visions of lung cancer and lymphoma danced in my head. I Googled “lung nodule” and almost passed out. I found out that the reason they recommend a three-month follow-up is to see if the size of the nodule increases, which can be a sign of cancer. I decided that there was nothing I could do about this new and troubling news and I found a way to file the fear into a “do not touch” folder in my head.

At the end of August, I had my follow-up chest CT scan. I realized the irony of being exposed to even more radiation when I had a nodule in my chest that could be cancerous. Because I am always scanned when I have a small bowel obstruction or an intra-abdominal abscess, I now fear CT scans like some people fear the dentist. When the voice tells me to take a breath and hold it, my heart races and I start to sweat.

The radiology tech was brisk and business-like, urging me to quickly hop up onto the hard, cold steel table. She maintained an air of professional competence until the scans were complete. When she left her little radiation-free zone, she was suddenly smiling softly, and she gently helped me sit up on the metal table like I was 90 years-old. I suddenly suspected that the nodule was a giant cancerous mass and she would be attending my funeral later in the year.

I asked her if she could see anything on the scans, but she stuck to the mandated radiology tech script that goes something like, “The radiologist has to read the scans and will send the results to your doctor who will call you.” When she patted my back, I flinched. Something was wrong and it was written all over her face.

But I had to wait. My family doctor is notoriously busy, so I knew I would have to let at least a week pass before following up on the results. I managed to once again file this knowledge in the “do not touch” folder in my head; and I decided to focus on redefining Crohn’s disease remission, while reveling in the fact that my symptoms had settled down for the first time in almost eight years.

Part of me–okay, all of me–didn’t want to know the results. I decided that if I didn’t hear from my doctor, then I didn’t have to worry. This is the exact opposite of what a chronic illness patient should do. If your doctor doesn’t call, that doesn’t mean that something isn’t wrong.

My behavior was childish, reminding me of the time I tried to hide the fact that I was in labor with my daughter. Instead of letting my family know that my water was breaking a bit at a time, I went out to eat with them and insisted on eating a full dinner followed by a piece of chocolate brownie pie. I was convinced that if I didn’t acknowledge it, it wasn’t happening. Let’s just say my attempt to pretend I wasn’t in labor to avoid the pain of giving birth didn’t work for long because my daughter waits for no one.

I almost didn’t call my family doctor to get the results of my lung CT, but my sister reminded me to check every. single. day. I called my doctor on a Friday, figuring she wouldn’t get back to me until the next week, but I was wrong. When she called me that evening at 6:30 p.m., I froze. I had never heard her voice on the phone before. She explained that the scan revealed inflammation through both lungs and scarring where the nodule used to be. The radiologist identified “…multiple other multifocal ill-defined areas of groundglass, reticulonodular densities throughout the right upper, right lower, and left lower lobes.” He concluded that I was suffering from an “…infectious or inflammatory process or underlying inflammatory small airways disease.”

Luckily, the results didn’t mention cancer.

I asked my family doctor what she thought it all meant, and she agreed that it wasn’t likely that I was facing lung cancer. But she said I needed to see a pulmonologist as soon as possible because my immune system has been compromised by Remicade for three years and Humira for another two. Additional tests were necessary to determine if I was suffering from an inflammatory lung disease, or one of the hard-to-treat opportunistic fungal or nontuberculous mycobacteria infections that have killed patients on these biologics. My doctor said she would organize the referral to a pulmonologist and I would have that information on Monday morning.

All I had to do was hurry up and wait.

[Read "Hurry Up and Wait: Part II]

9 thoughts on “Hurry Up and Wait: Part I

  1. Wow, nicely written blog. Sorry you have had this daunting nodule in your back burner of your head for 3 months. Thinking of you and hoping things will be okay after pulmonologist appt

    • Thank you for reading and for commenting! It’s a hard thing to carry around. I’m not one for spoiler alerts, but I am still dealing with it. I am going to post the next part on Monday.

  2. That’s so well written. I’ve just been told my crohns has taken over my whole small bowel and they’re putting me on biologics. I am so scared!!!

    • Hi Ellen! It’s definitely scary to make the leap into biologics. I’m sorry that Crohn’s has taken over your small bowel–and I’m sure your GI is trying to save it by having you move to these meds. It seems like IBDers are always between a rock and a hard place! ~ Christina

  3. Hi Christina, thanks so much for telling it how it is, and opening up your heart and soul to your readers. I have recently started reading your blog and have benefitted so much from your stories, and getting to know you through them. I appreciate the vulnerability shown and can see your tremendous strength in the face of adversity. I’m no stranger to the challenges faced by chronic illness (Crohn’s and Chronic Fatigue Syndrome), and can imagine and understand some of the suffering that you are undergoing. I’m sorry you’ve been dealt another trial in the form of this lung condition. I’m so glad that there are so many people encouraging and supporting you, and I’m happy to join the cheering squad :) You are in my prayers. Hugs!
    PS thanks also for you role in the IBD round table discussions. It is a highlight watching you interact with your great friends and sharing your stories/wise words!

    • Hi Snez! Thank you so much for reading and commenting! When I get such a lovely comment as yours, it lets me know that I need to keep writing and that I’m not alone. Thank you for watching the Round Table, too. We love our viewers and enjoy meeting them. If you ever want to submit a question–even an anonymous one–let me know. You can email me at LivingSick@yahoo.com. We’ll try not to be too silly next time (but no guarantee!) :) It’s nice to meet you! ~ Christina

  4. Jeezum. I know what you mean about hurry up and wait. It is a crohnie’s mantra. hugs to you and your family. Sending positive karma your way for extra spoons to deal with all of this! xo

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