After the fluid was drained I could definitely breath a lot better. It was light a weight had been lifted off my chest. Like a 20 pound cat had been sitting on my chest this whole time and it had finally jumped off. My spirits were lifted because I was feeling better but I could tell the doctor was uneasy. She wasn’t saying much but did explain what normal lung cavity fluid was; clear to slightly brown tinted and that everyone had a tablespoon or two in each lung cavity. My fluid was not this. She said since it was chyle fluid and what I possibly had going on could be a few different things, none of them favorable. I can’t remember what the options were she mentioned except that, at the top of the list was of course cancer. Fuck. I took a deep breath and decided I was going to try and play it like Josh, don’t get too upset until we knew for sure what was going on. The doctor said she was going to run some tests on the fluid and ordered a CT for 3 days from now. This was a Tuesday.
The next two days I went back to work and on Thursday afternoon, after work, I got a call from the doctor. She had the results from the fluid testing. She told me that the fluid tests showed that there were no cancer cells so it likely wasn’t related to cancer. Thank goodness. But what the hell was going on?
In the two days since having the fluid drained I had started to feel gradually worse. Also my appetite was shit. I didn’t feel like eating anything. I was also feeling weaker. Probably because I wasn’t eating. I barely made it to get my CT done on Friday morning and did not go into work after. I was struggling to just get around. The CT was a full abdomen and chest scan. Since they included my abdomen I had to drink about a liter of contrast fluid. It mainly tasted like water and was clear but I had to drink it fairly fast which was a struggle.
A couple hours after I had the CT the doctor called me. She had a diagnosis. She told me that I had a rare lung disease called Lymphangioleiomyomatosis or LAM for short. She helped me spell it out so I could write the word down. Even MS Word didn’t recognize the word as a word and underlined it red as I typed it out! It could be genetically passed down for some but she said that she thought that I had the sporadic type since in her exams of me she didn’t remember seeing anything that would indicate the genetic type.
The saying is true. You do feel a sense of relief. For me it lasted about 10 seconds and then my mind instantly felt all kinds of other emotions including despair, panic, and confusion. What the hell is LAM? She mentioned it is where you have benign cysts on your lungs (though I didn’t pick up that it was both lungs until later, since I thought it was only the lung that had fluid in it that was affected) that slowly grow and make it hard to breath. It is caused by a mutation in a gene. She mentioned mine were small and that I was diagnosed early. January 16, 2021 UPDATE: The main photo is a CT picture of my lungs from June 25, 2020. The little black dots on my lungs is the LAM. It was chronic and there was no cure. She also mentioned that LAM affects mainly women and that there are only about 2,000 reported cases in the world. There was an FDA approved drug to treat LAM called sirolimus but she wasn’t going to prescribe that for me just yet. She wanted to do some research and follow up with a couple of doctors that she could refer me to. She mentioned that estrogen could exacerbate the disease and so I needed to stop taking birth control pills. I made a follow up appointment with her for Tuesday afternoon. The other surprise she had for me was that all the fluid had returned and that I needed to go into the ER that night and have all the fluid drained again. Lovely. I was hoping after the first time draining the fluid that I would never have to have that done again. I was so wrong.
I got off the phone with the doctor and right away called Josh. He was at work. I told him the diagnosis and he said he would come home. Based on what I could discern from his state of mind he wasn’t going to be able to get much work done anyway.
Sidebar: Josh is not one to wear his heart on his sleeve. When it comes to sad or unhappy emotions he doesn’t really show them, which makes him a hard read sometimes. He explained before that he thinks it is a product of his childhood. When Josh got home I could tell he had been upset. He is very data and information minded so he went right to the internet. I will say right now, scary things live on the internet related to LAM! 10 year prognosis being the scariest. Please remember that since this disease is relatively new (established in the mid-1990s) and there is a lot of information out there that is just plain outdated and inaccurate. Many of the studies were before sirolimus was approved for treatment and not as much was known in general about LAM. If you go to the internet please don’t get discouraged. Check the dates of any study you find. In my experience, the older it is the more outdated it is. OK, back to the story.
My doctor had said before we got off the phone that she was on-call at Overlake ER in Bellevue that night and so it was likely that if we came in she would be the one that would see me and drain the fluid again. At about 5pm we headed in to the ER. We got checked in and I told them I needed fluid drained and that my doctor was on call and I would like her to see me. Sidebar: The ER doctor did not know what LAM was. You will find if you are newly diagnosed that this is a very common occurrence. Don’t be shy about teaching your doctor about LAM. The more they know the better in my opinion. My doctor came in and it was nice to see her the same day of the diagnosis. Josh and I were both visibly upset. There were some tears as we sat and talking about the future. The doctor mentioned that having kids was not out of the question but could be dangerous and was not recommended. Josh and I were on the fence about it, me more on the yes side than Josh but after the diagnosis we decided that we had our answer. I would not be having kids.
My doctor asked me how I had been feeling lately and I said, “Like crap”. I told her that I hadn’t eaten anything in at least 24 hours because I had no appetite. I think I had been in a bit of shock the last week or so. She mentioned she could prescribe me some Xanax. I said “Well, OK”. This interaction with the doctor made Josh remember a very funny bit by a comedian named John Mulaney where he recalls the time he tried to get a prescription for Xanax. See link here to the youtube.com video of the bit.
This time during the procedure to drain the fluid Josh distracted me by playing the video on his phone. John Mulaney does this bit in his comedy special called “New In Town”. If you have never seen it, I highly recommend it. It is available on Netflix and it is hilarious, and, in this moment, it was very topical! This second fluid draining event went smoother than the first.
After my doctor drained the fluid, we had a conversation about the high likelihood that the fluid would keep coming back every few days and that I would need some kind of interventional temporary solution while I got connected to a specialist and figured out a permanent solution to deal with the fluid. She mentioned that we could assess the situation when I saw her again on Tuesday. She mentioned the best option would be a tube that would be inserted into my lung cavity and come out the front where I could drain the fluid as often as needed. 20 Great. The adventure continues…