Category Archives: cancer

Hug a librarian

Apparently yesterday was “Hug a Librarian Day“. 

My kid at the Frances Morrison Library in Saskatoon

My kid at the Frances Morrison Library in Saskatoon

 

I didn’t get around to hugging any librarians (though I know and have huge respect for several – I’m looking at you, Michelle, Krista, Sonya and Betty), but I wanted to write a post today about how the library has tangibly changed the quality of life for my family.

If you dig back into the archives of this blog, you’ll see that a few years ago my mom was diagnosed with something called Mycobacterium avium complex, or Lady Windermere Syndrome. It was good news at the time, because it was treatable and curable, as opposed to the fourth stage lung cancer they initially thought it was. Three and a half years later, she still has it, and after a few very intense and long courses of treatment, she’s just not responding. Her lungs are shot. They’ve been described by her doctor as old underwear – no elasticity left.

As such, she doesn’t get out much. She’s around 85 pounds and is susceptible to illness, so big shopping trips or outings are just not a good idea.

Last summer when we were visiting her, I took her to the library and signed her up for a card. She’d had one years ago, but it had lapsed and she hadn’t got around to renewing it.

Since then, I’ve taken on the role as her own librarian – going online, choosing and requesting books for her that the library then puts on hold. My sister, who lives in the same city as my mom, then goes and picks up a stack of new books and returns the finished ones. Since September, I’d wager she’s read at least 150 books, and that number is probably conservative. She’s close to reading a book a day.

These books, which range in genre and era, have changed her life. They take her places she can’t physically go. They give her something to think about beyond what’s outside of her window or the rattle in her chest. They’re keeping her mind sharp and her wits intact. They make her laugh and keep her riveted and always give her something to talk about. They keep her company while my sister’s at work and the temperature is -40 degrees Celsius (it really is that cold in Saskatoon).

So, while I didn’t hug a librarian yesterday, I’m so thankful for them and for libraries. My mom is, too.

kp

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Filed under Book Challenge, Books, cancer, Family, Friends, Library, weather

Labor, Love

I’ve finished two books since my last post (and am about 40% through a third, so it’s high time I add a post.

The first was Labor Day by Joyce Maynard. I requested this from the library based on one of those “read these books before they Labor-Day-movie-tie-in become movies” lists, and figured that if Kate Winslet and Josh Brolin were starring in a movie version of this directed by Jason Reitman, it had to be good.

Well…

It was okay. The novel is about an introverted single mother and her young teenaged son who encounter – and then take in – a prison escapee at the beginning of the Labor Day weekend after he forces them to give him a ride. The three form an unlikely family bond and forces questions about what it means to be held hostage – literally, by your past, and by your own fears.

I haven’t seen the movie yet, so I can’t comment on that, but the book was short, easy to read and just fine.

The second book I read in the last week was The Fault in Our Stars by John Green. Another book on that same list (the movie comes out this June), this has been on my radar for a while. My only question is: why did I wait so long to read this?

Here’s the answer: it’s a book about teen love, and sometimes those are just bad. But, holy crap, this one is good.The_Fault_in_Our_Stars

The twist is that the protagonist, Hazel, has stage four terminal cancer, and meets what could be the love of her life at a cancer support group. I don’t want to say more because you should just read this for yourself, but know that it’s not corny, it’s not condescending, it’s not cloying. It’s funny, smart, and well written enough to make this 40-something’s heart break a little.

A shout out to Michelle, my librarian friend in Scotland, who reminded me to get this back on my list (and keep your recommendations coming)!

Next up: All the Broken Things by Kathryn Kuitenbrouwer.

kp

 

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Filed under Book Challenge, Books, cancer

Lots to be thankful for this Thanksgiving

Mom in July

Mom in July

She’s home! 

After several weeks in the hospital, in no fewer than six rooms with seven different phone numbers, my mom has been released and is back home! I’m so happy for her. And for the rest of us. 

Honestly, even though we got the great news about her not having cancer, I couldn’t help but feel like the other shoe was going to drop the entire time she was there. What if there was a sample they hadn’t tested? What if she got sick with something else? Having her home has let me breathe a true sigh of relief. Not only does she not have cancer, she’s now considered healthy enough to not be under the watchful eye of nurses around the clock. 

Let’s just say I’ve got a lot to be thankful for this Thanksgiving. 

Now, to completely change the subject, can I tell you how much I love the fall? 

Not because of the crisp air or the crunchy leaves or the back-to-schoolness of it. I love fall because it means that all of the TV shows I’ve been waiting for all summer have been released on DVD. 

We’ve been watching a lot of television in a pattern that I don’t normally approve of–I prefer to watch comedy followed by drama, but we’ve been watching back to back comedies, given my rather grim real life situation. It’s a dangerous pattern, especially if you’re following a great season of comedy with another comedy. Some funny is funnier than others. 

The good news is that it hasn’t backfired on us. Over the past few weeks we’ve watched Season Six of The Office, followed by Season Five of How I Met Your Mother, and now we’re watching Season One of Modern Family

I know I’m late to the game on Modern Family, but it’s amazing. LOVE it. The characters are fantastic, the casting is perfect and the writing is hilarious. 

I’m actually going to watch an episode now, but I’ll leave you with my favourite quote of the season: 

“I’m sort of like Costco. I’m big, I’m not fancy and I dare you to not like me.” 

The best. 

kp

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Filed under cancer, Family, TV, Uncategorized

A Fox, some hives, a tube and a Featherleaf

Tomorrow, Scarlett does the Terry Fox Run. When she was four and in Junior Kindergarten, she took it very seriously.

I’m going to try to get her to retell his story this year to see if the peg leg remains…

Also, I’m finally getting my allergy tests tomorrow, right as I’m on the cusp of what feels like will be a wicked cold. The appointment couldn’t come at a better time. The hives on my hands have migrated down to the soles of my feet. In case you’re curious, that’s a bad, bad place for itchy soreness.

Let’s hope this doctor knows what he’s doing. I’m expecting miracles.

Speaking of miracles, my mom is still in the hospital, and probably will be for a while yet. She’s having daily xrays, and according to the latest her right lung is leaking air, so she’s got to keep her chest tube for now. This was discouraging news for her, but I keep reminding her that it’s better to keep it in than to have it removed and reinserted. She’s also out of her isolation room and into her fifth room in the hospital. It’s a private room, though apparently very tiny.

Lots of love to everyone who continues to visit her, especially Jody who has been at the hospital every day. I don’t know how I can ever repay her friendship and her kindness. What I can do, however, is send everyone to check out Featherleaf, the amazing line of skincare and other products that she and another friend Jess make. It’s organic, locally made and truly lovely–I came home with a big bag of their stuff. Please check out their Etsy shop or their Facebook Page.

kp

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Filed under allergies, cancer, Family, Parenting

The Truth Comes Out or Why I Love Oscar Wilde

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?

kp

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Filed under cancer, Family, Uncategorized

Feeling Imbalanced

Everyone talks about finding the right balance in life, but do you know what? Balance is impossible.

I figured this out on the plane today as I came back to Toronto, leaving my poor, sick mom in her isolation bed. There is no balance. The best one can hope for is integration.

The fact is that I’m a daughter–it was my first role. But I’m also a sister, a friend, a wife, a mom and an employee. As much as it killed me to leave my mom and my sister–in limbo, no less, as there’s still no diagnosis–I needed to come home to spend time with my husband and daughter.

So tonight, I’m feeling some serious guilt. I spent my time with my mom missing Scarlett and Chad, and now I’m in Toronto missing her.

Hopefully an update with a diagnosis tomorrow.

kp

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Filed under cancer, Family, Parenting

The Medical Mystery Tour

Oh, hey. Been looking for me? Yeah…I’ve been setting up shop somewhere between the seventh circle of hell and the depths of despair.

Okay, probably the third or fourth circle, if I’m being honest. If there’s one thing I’ve learned it’s to never think you’ve hit rock bottom–there’s always a lower level.

We’re continuing our Medical Mystery Tour with my mom–waiting for results that are getting crazier and more complex. We’re in an isolation room now–known in the ‘biz’ as a negative pressure room–wearing masks. Not much more to say than that. Also–if you’re thinking about visiting her–don’t. We’ll let you know when it’s cool to come down. Also important to note: don’t eat anything with onions in it if you’re going to wear a mask all day.

As icing on the cake, we’re all a little extra sad because today is the seventh anniversary of my dad’s death. It’s always a hard day for us, but this year is even trickier.

For the first time since he died, I’m actually happy he’s not here. I know how that sounds, but I honestly don’t think he would have been able to handle seeing my mom like this. It would have broken his heart. I truly believe that if there’s one shining light in all of this mess is that my dad was spared this experience. I miss him like crazy, but I’d prefer to think about him watching over her than sitting and weeping by her bedside.

My plan was to fly home tomorrow, but it looks like I’m going to be grounded for a while. Updates as they come.

kp

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Filed under cancer, Family