I’ve been a bit vague in my last few posts because so much has been up in the air. I felt it was safer to make my blog more about how I was feeling than about what was really going on. Today, I can finally give the big reveal.
The last few weeks have been a bit like an episode of House. I know I’ve referenced the show before, but I’m seriously considering sending this crazy plot to FOX. It has had all of the drama, the twists, the heartbreak, the humour and the elation of a great episode. Here’s how it unfolded.
As you know, my mom had a routine checkup, which led to a chest x-ray, which led to a CT Scan and a lot of doctors with long faces. A few weeks later, she was admitted to hospital for a lung biopsy, which was attempted with a needle and collapsed her lung. I flew home to be with her. Here’s where it got a bit vague.
Last Friday, the doctor looking after her came in to talk to us. He was one of several who has been overseeing her care, but by far was the most candid and also the most compassionate. He sat down with us and told us that there was little hope for my mom. Her lungs were so riddled with nodules, that not only did they expect that she had far advanced lung cancer, but that it likely had traveled around her body. He also told us that they would not pursue treatment post-biopsy–they would make her comfortable for the months of her life that she would have remaining. No chemo. No radiation.
This was a blow. A prognosis of months without an option of extending her life was a very harsh reality. He also told us that they would not likely investigate the other locations of the cancer due to the advanced stage of the cancer in her lungs unless it caused her issues. I questioned this for my sister and I, saying that if she had cancer in her ovaries or breasts, it’s important for our own genetic histories to know that information. He agreed and said we’d discuss this after her biopsy.
We steeled ourselves after hearing this news, but kept our chins and our spirits high and basically began drafting our family bucket list. Mom wants to go to New York? Let’s do it. Autumn in Ontario? Let’s fly her out as soon as she can get on a plane. It was incredibly hard, but knowing was better than not knowing. That said, the confidence in this diagnosis was so great that we considered cancelling the biopsy. Mom was so weak already after the lung collapse, that we questioned the value in putting her through more pain. Our thought was that a prognosis was important–we were told it was likely Stage Four cancer, but how aggressive was it? A biopsy would help us plan out the next few months.
The biopsy was scheduled for Monday afternoon, and after a few rounds of Scrabble she was wheeled down. We all had a little cry, and sat and waited.
Following the two hour surgery, the surgeon came out and spoke with us. He was…puzzled.
He had made three cuts and was able to grab a few nodules for pathology. But he also discovered other things lurking in the lungs. Like pus. And fluid in her chest cavity. He took samples of everything, but was clearly a bit confused. We were told results would be back within a week.
The next day my mom rode a wave of morphine, spouting some awesome drugged-up quotes like: “Great. Now I’m going to end up in rehab with Lindsay Lohan.”
She had a chest tube the size of a garden hose sticking out of her, an IV drip, a morphine drip, leg compression things that ensured she didn’t get blood clots, a catheter, and oxygen. Her spirits were good, but she was pretty weak.
At about 5:00 on Tuesday, a nurse came running into the room, grabbed the woman in the next bed, tossed her into a wheelchair and ran out with her. She returned in a minute throwing masks at my sister and I saying, “If you want to be in here, you have to wear these. She might have TB.”
Yep, TB. Tuberculosis.
Oddly, none of us were very shocked.
Rewind 50 years, to when my mom worked at the Saskatoon Sanatorium. She wore a cotton mask and wiped up blood coughed up by dying babies and old people. We knew she’d probably test positive for TB exposure, but was it realistic that it could be activated 50 years later? Apparently it was.
Her room went into lock down. The nurses posted a big stop sign on the door and instructions on how to enter the room. A cart with a variety of mask sizes was parked outside her door. Nurses were buzzing around the ward with concerned looks on their faces, clearly freaking out.
An hour later, my mom was masked up and wheeled to an isolation room, known as a negative pressure room. Everyone entering or exiting had to go through a little ante chamber to put on a mask, wash hands and wait 30 seconds. The room itself had glass walls, a loud fan, which sucked all of the air to…somewhere…and was a place where hospital staff did not want to be. Nurses would come in if they were buzzed, and that’s about it. That’s not entirely true–some were great, but some treated my mom like she was a leper. Not cool.
The other not cool part of this was my own personal freak out. I realized that if my mom had TB there was no way that I would be able to fly home to my family. I know that’s selfish, but it had me seriously worried. And, as a side note, my hive issues have had me on Prednisone for over a month, which has done a fab job of squashing my own immunity down to nothing. Scary stuff.
For me, this was the lowest point. TB is obviously better than cancer, but TB plus cancer? That just sucks.
Wednesday morning a doctor specializing in TB came in to talk to my mom. He looked at her scans, heard her history, listened to her chest and told us that it could be TB, but that it could also be something called MAC, which is not contagious and could be cleared up with medication. He also gave me the green light to fly home. I took it, albeit with a ton of guilt.
Since then, we’ve waited. We knew what was behind each curtain, we just didn’t know which one fate had chosen.
Today we found out.
She does not have TB and is coming out of isolation.
There are ZERO cancer cells in her body.
What she has is a quaint-sounding infection called Lady Windermere Syndrome, named after the character in Oscar Wilde’s Lady Windermere’s Fan.
Lady Windermere Syndrome is a non-infectious disease of the lungs, which is treatable with drugs. She started medication today, and will be on a five-pill cocktail for a year under the supervision of a doctor who specializes in infectious disease. The drugs are hard on the system, but nothing compared with what she was up against.
Now, she needs to focus on getting her chest tube removed and on breathing without her oxygen tube. She needs the green light from a physiotherapist, has to gain a little more weight and then she’ll be good to go home.
I talked to the doctor who had the initial “courageous conversation” with us about cancer and her prospects, and he told me he called the week a roller coaster. He wasn’t kidding. In a week she has gone from a death sentence to a new lease on life. It’s….amazing.
It’s also been a giant wake up call about the importance of time. There is nothing greater than time when you see it slipping between your fingers. Now that we’ve got it back there’s no way we’re going to waste it.
So are we going to go to New York? Hells yeah. And as soon as her lung heals we’re flying her out for autumn in Ontario.
My mom is a woman of faith, and she pointed out to me today how many people had been praying for her. I actually don’t think she has any idea how many people were thinking about her, praying for her, sending her good energy, good vibes and good feelings. While I’m not sure any of it helped the chemistry in her body, I do know it helped me. Your comments, your thoughts, your encouragement and your support have pulled me through this scary time.
Back when Chad had his surgery, I was struck with the kindness of people. People are inherently good, no matter how annoying they are on the subway, how frustrating they are in lineups and how badly they drive. My mom’s saga has reinforced this belief for me.
I’ll continue to blog and will update you on how my mom’s doing, but I’ll hopefully be able to lighten things up a bit. I really didn’t intend to be a medical blogger. That said, I do see the allergist on Thursday….
Thanks again for everything.
So, what do you think? House?