Watching and Waiting

The loveliest of lovely people at Huntsman got me squeezed in with the Pulmonologist up there today (when they say next available appointment I usually expect day or two), which is good because Mike and I took work off because we were not quite in the best mental place after hearing the word “nodules” involving my lungs… We had expected a clear CT in the back of our minds. We were sort of thrown into a strange place because that is what a tumor in the lung is usually called at first… a nodule. Not to mention a collapsed lung (no matter how small it is, how strange is that?).

We are both back to a level of mental calm after the storm because we have learned that your body really can only handle a certain amount of freak-out and then you have to find your happier place.

We were shipped off to a new wing at the Huntsman. This clinic was much larger than the breast cancer clinic, and it was covered in rich mahogany (ok I don’t know what wood it was, but it was pretty). It is a large hospital and you get used to your own nooks and crannies, so new areas seem like very uncharted territory. One thing I do love about the Huntsman is that they do hire really good doctors and great nurses, for some reason I always really extra love the nurses. :)

When we met with the doctor he sat down and we went over my vast history of attempts at squelching my phantom cough. From antibiotics, to asthma tests, to steroids, to dancing around fires (maybe not a lot of dancing around fires), but my GP had exhausted a lot of stuff and I am exhausted. Coughing hard, often, makes you pretty exhausted.

He then scrolled through my CT. The nurse seemed to have a small giggle at the size of my nodules (that may not really have been the case, but they of course they DO work with real life lung cancer vs. these little guys), I almost felt inadequate, except that I don’t want large nodules. I don’t want any nodules… they really did have to dig around for them a bit. I tried to get an idea what part of my lung they were in (they didn’t mark quadrants in the report). The left one was sort of aligned with my tumor (ick) not sure where the right ones were… they also located my pnuemothorax after some scrolling. You could see what looked like scar tissue and a not happy area. What freaks me out is that there are so many of them (I have no idea if that is good or bad from a medical perspective).

Ultimately, he didn’t feel like anything on my CT was causing my cough. The nodules were too small, the pnuemothorax was too small (feelings of inadequacy talking again over here…). So we go back to the experimentation game of ruling stuff out. I am going on Advair along with a cough suppressant for 3 weeks and then an antacid for 3 weeks. Exploring asthma (again) or acid reflux (did you know reflux causes coughing?). If that doesn’t work we start digging some more… he described that there could be a nodule in my breathing area that the CT could have missed or damage to my esophagus from radiation that is causing reflux – both quite possible now that I visually saw the damage to my lung and remember them having to move my radiation path off of my esophagus within the first week because my throat was sore. The Pulmonologist even made a comment similar to the one rolling around in my brain about all of this popping up even though it was a whole 2 years later (I knew I liked him). Now I feel like I need to visit my radiation oncologist who I have been ignoring in my cycle of doctors visits because I feel like I have way too many doctors visits…

I asked what are we supposed to do about the nodules? He got a fairly serious look and essentially said that we watch them. Yay, my favorite, more lumpy things to monitor (that was my sarcastic tone). His plan is a 6 month CT to see if they get bigger although my oncology team had suggested a 3 month CT, but I see my oncology team within the next 3 months, so I can gather their take in the meantime (and I know my oncologist is getting the full update tomorrow when she gets back). So, for the time being, the 6 month CT is scheduled. They don’t seem to like to biopsy ones this small without some idea on how long they have been there and what they are doing. He had asked if I had met with my oncologist yet on all of this and I had noted that I had not.

So, in 3 weeks I get a lung x-ray to make sure my wee bitty lung collapse isn’t up to no good (the pulmonologist thinks it will go away on its own), and we switch meds. Hopefully by then my phantom cough has just gone away on its own.

My favorite part… As we walked out of the exam room the doctor mentioned everything being as “clear as mud.” I knew I liked him.

Author: Mandi

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  • Nancy Stordahl

    I’m so sorry about your nasty cough. And about those darn nodules too. I hope both just disappear by your next visit. I’m happy you like your doctors, nurses and facility – even if things are ‘clear as mud’. Watching and waiting is hard. I’ll be thinking of you.

    • http://www.darngoodlemonade.com Mandi

      Thanks Nancy, it looks like it is going to be a very long watching and waiting process, but my friend Jen said “This muddy news is better than crystal clear bad news.” so I am taking it! :D

      • Facing Cancer Together

        That is for sure.

  • Molly Buys Froerer

    I’m so sorry about your cough and all the stress! I don’t even want to imagine what you’re going through.

    I was wondering if you’d give me some advice. I had a single mastectomy when I was diagnosed, and I really want ‘em to take off the other one. (My dear doctors aren’t listening to me, but who cares. I’m taking charge of my health care and my breast, danggit!) You mentioned you had a double mastectomy, and I assume, a double reconstruction. I’m getting reconstructed next summer, after radiation. So, my question is, should I have the second mastectomy first or wait a year, in your opinion? I still have three little kids including a baby, so not being able to pick up a kid would be really hard. How hard was it to recover from the double reconstruction? This was very rambling and I know you’re going through your own stuff right now, but I need some advice! If you want, you can email me at mollybuys@yahoo.com. Thank you!

    Molly

    • http://www.darngoodlemonade.com Mandi

      Molly I sent you an email. :)

  • Facing Cancer Together

    I hope by the time they get around to these scans you’re already feeling 100% better. Lung collapse is no fun at all, even if it’s teeny tiny. Let’s hope it heals up soon, and those nodules either go away or don’t change one bit. ~Catherine