One Last

I think that many understand and acknowledge the significance of one last moments. There are many families who cling desperately to them long after the fact, occasionally there are news stories that sometimes highlight them and at the very least, they form the memories that we lovingly recall when we miss our loved ones. Not all are fond, as some can be full of regret or other negative things because in many cases, exits happen suddenly and unexpectedly. This is a bittersweet, one last story that I’m going to share that wasn’t solely intended to be a one last.

For my sister, some of the one lasts were created with intent and for the purpose of providing comfort down the road to reassure the children that she’d leave behind that she loved and cared for them very deeply. In doing that, she solidified who she truly was. For the rest of us, there was never any doubt in our minds about who she was but her sons were very young, perhaps too young to really know their mother.

I suppose I’m writing to provide a different perspective for those who’ve never encountered these experiences and perhaps provide an understanding as to why these moments hold so much meaning. This is a moment that my family and I reflect back upon constantly, next to Lea’s final days and moments before her death. For many, this tiny, insignificant blip of a moment within the universe was completely irrelevant, and for those living within the world of privilege, is merely nothing to write home about.

For 2 young boys who will eventually grow up and become adults with families of their own, this moment will define and sum up their entire mother’s being for the remainder of their lives. It will be the story they tell their children and their grandchildren in the many years to come. It’s astronomical to consider the weight of one single moment in a seemingly insignificant life for perhaps many in the future. It certainly holds deep meaning for a small number of people right now and it will be interesting to see what it will be in the future.

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Lea pulled some cash out of her life insurance policy. Being sick is expensive in so many different ways, and having money in order to survive is a huge part of the battle. Even for people who are monetarily comfortable, being sick can decimate them financially…even in Canada. Clem and I have experienced this for ourselves when Caelan had cancer.

Lea committed herself to her survival homework as often as she could and continued her plan with the COC. She was running to I.V. Vitamin C treatments and ordering different concoctions from the internet wherever she could to meet the different needs she thought needed to be addressed during her discovery process. That spanned from statins all the way to canine dewormer. She’d often throw me a few different names of things she’d stumbled upon to take some of the reading off of her plate but many of the studies she was quoting were done with a dozen mice or so.

She was so desperate to stay alive that anything and everything that she saw that had any positive outcome, she grasped at, like someone who was drowning and reaching for a floating object. A dozen mice, a handful of people, whatever it was, she added it to her arsenal. I think she was consuming more pills than food at this point.

The Plan

The hours of time dedicated to her study during the day, took away from the precious time that she had with her family. She made as much time as she could for everyone, but in the evenings after her kids went to sleep, she was consumed with research until exhaustion overwhelmed her. The phone calls, appointments, and full life with 2 young kids illustrate the reality of the struggle that occurs when you’re terminally ill at a young age. This seems to be becoming more prevalent and I have no doubt that it will continue to be that way unless we figure out the reasons why it’s happening.

Everything seemed to move at a clip in January and February, as Clem and I were preparing to take our girls to Aruba again. We desperately needed to get away, recharge, and reconnect as a family, but it was a night in early February that spurred some serious thoughts about Lea taking her family on vacation as well. This conversation took place after we’d had dinner with Lea, Wade, DJ, and Rae who were here visiting (I miss those days). We excitedly considered taking the opportunity to travel to Aruba together, which was very last minute, but that’s how they tend to roll, ha.

We devised a plan as to how to make it all work and once DJ and Rae got home, they started making phone calls. We were all really excited about the possibility and I think we all hoped that miracles would’ve pulled it all off. Unfortunately, passports became an issue and before we knew it, all of us going together was off the table. It was an exciting prospect and one I wish would’ve happened for us.

Mexico

After failing to go together, Lea felt that she should still take her kids and just get away to wherever she could while she was still able. She’d always wanted to take the kids to Mexico, a place that she’d visited a few times and absolutely loved, so she began looking for a cheaper alternative to Aruba in Mexico. Clem’s family has a timeshare and it would’ve been cheaper to jump in with us but as she was always stubborn, she decided to do her own thing.

Lea managed to find a booking for one week, departing around a week after Clem and me. She’d decided to go for only one week and book another not too far down the line as a possible break during treatment. She was trying to conserve the insurance money because she had been considering the United States or Mexico for treatment and that was her only source to make that happen.

Having this type of cancer is a lot like playing poker, you’re constantly having to re-evaluate the cards in your hand and when to play them. The only issue is that cancer is a sneaky bitch and can steal your cards, or play your cards against you in ways you hadn’t contemplated. Also, the rules don’t often apply to it, so it does whatever the hell it pleases, much like a game of Calvinball from the comic Calvin and Hobbs. Often, as many of us know, it ends up being a losing battle.

Getting her ducks in a row

As Lea’s oncologist had informed her in January, the next step was chemotherapy, and the sooner the better. If you know anything about EGFR lung cancer and chemotherapy (the combination he was proposing), the odds weren’t very good, at all, for most. If I recall, for this type of cancer, it was even more dismal than the usual lung cancer that smokers often face when the only option left is chemo. Targeted therapy is superior, but in Canada, that road is very short.

Before we left for Aruba, Lea discussed another prospect she was considering, and that was a company called Massive Bio out of the United States. This company sends out a kit in order to determine what other kinds of mutations Lea could’ve been dealing with if that was indeed what was happening. The price tag for this I believe was $3,000 at the time. Canada couldn’t test for anything beyond the T790M mutation that she currently had…which was very limited in comparison to other countries at the time (not sure if it’s any better now).

So, Lea was very particular as to how this precious cash was going to be spent and one of the most important things she wanted to do was to get out of this reality she called life and spend some quality time with her kids. She wanted to create positive memories for her boys to have after she was gone if things took a turn. I think she knew that time was running out.

When reality hits…on vacation

Before we’d left, I told Lea to continue sending me anything and everything so that I could help her read and figure things out. Of course, she was blowing some smoke when she said she would but I made her promise anyway. I felt guilty about leaving but she insisted we go because that’s exactly what she was going to do too. Leave life behind for a while.

As Clem and I tried to enjoy our time away, we constantly had Lea on the brain. Clem’s parents were also in Aruba and were trying to spend time with us whenever they could. Let’s just say that it wasn’t the vacation we thought it was going to be. I was spending time reading up on more treatment options in the evenings when we were all in for the night and sending it to Lea as soon as I could.

Only a couple of days into our trip, I learned that another young mom that Lea knew who had been battling breast cancer (she was married to a former schoolmate of Lea’s), had passed away after receiving treatment in Mexico almost a year earlier (I think it was close to this time frame and she’d had brain surgery that they wouldn’t even attempt here), which bought her more precious time with her kids after the very same cancer hospital Lea was going to, said they had no other options. This was certainly not the first time I’d heard of this happening, and in fact, there were a few people who looked elsewhere and managed to squeeze out a little more time by doing this, some still alive years after the fact.

Other stories

What does this say about treatment here at home? Did leaving the country actually extend their lives? I’ve heard of a handful of people who were told to go home and let nature take its course but bravely stepped up and left the country, only to come home after treatment and survive many more years. There aren’t many, but it’s certainly not as rare as I once thought.

I’d never met this person, but was devastated for the family. I don’t know if I was thinking about Lea and her situation and how that was where things were headed, but I ended up with a killer migraine from bawling my eyes out. My vacation certainly wasn’t restful or recharging. No matter how hard I tried, my mind just wouldn’t let up.

Unfortunately, I know of a similar story about the only other person that I’d heard of here, that had the same kind of cancer as Lea but never met (a friend of mine named Kristen, worked with a guy who’s wife was diagnosed). Lea often called many of the non-smoking women who get this form of lung cancer, such as this lady, vegan runners because she was a fitness buff. Lea had read about other young women who were very much the same in regards to being fit and health-conscious who suddenly found themselves diagnosed with lung cancer, even though none of them smoked…odd, isn’t it?

Focusing on the now

Kristen put this lady in contact with Lea and Lea eagerly sent her a text, offering support and sharing her newfound knowledge. They only had a few exchanges before their contact abruptly stopped. As I later found out, only 3 weeks after Lea had connected with her, she had passed away. I’m sure Lea figured it out too but I was afraid to ask Kristen for confirmation at the time.

I never talked to Lea about the young mom with breast cancer. I didn’t want to upset her further because she was devastated and I desperately wanted her to have an amazing trip with Wade and the boys. As it was, she was running around trying to get her things gathered and prepare for takeoff. These were better things to be doing than dwelling on what was ahead.

It was during this time that Lea really began to butt heads with her oncologist. He insisted on chemo immediately and Lea wanted to try other things first. Foolish? Perhaps, but who knows if this would’ve helped or taken her to the grave earlier. The studies we found were not positive at all, especially since the bulk of the issue stemmed from her liver and these studies showed an even worse prognosis.

And your personal stats are?

This led to Lea having to beg for her prescription of Tagrisso to be filled and thus began the long course of anxiety in begging him to do so. More anxiety that she really didn’t need. I know, many would say just follow doctor’s orders, but after everything we’d been through up until that point, with no convincing evidence that this was truly going to do anything, Lea was the one calling the shots, not him. If he’d had something more promising, she’d have jumped on it, but there was nothing really giving Lea enough evidence that his method was going to alter the outcome.

He never gave an honest account of his personal experience regarding potential outcomes, so we had to rely on what we found. As I said before, there weren’t any glowing reviews on any of it, and we had stumbled upon other chemo combinations that may have in fact offered more hope but they didn’t offer it here. He was attempting to be convincing that his garbage may do something when we were seeing that it truly wouldn’t and could’ve possibly caused more harm.

She’d inquired about low dose chemotherapy, which was a very interesting read at the time. He said he had no idea how to do that. Really? So she’d already looked into places that did, one was in Mexico and the other, in Chicago.

Canada’s health care is archaic apparently

After Lea mentioned the trip, he gave her his blessing (what was he going to do, stop her from getting on the plane, seriously) to go away for the week but to come back and start chemo immediately, of course. She never told him anything about the fact that she’d been in contact with her other options in the U.S. who’d already called his protocol archaic. It was an eye-opener for Lea and when they sent her the data they had, she was already considering other arrangements.

I don’t know if anything is truly superior but at least others are trying harder elsewhere it seems. Best health care in the world? Then why do some go elsewhere to seek treatment?

Anyway, I’m thankful to my parents for staying at Lea’s and looking after our dog, Lea’s dog and our guinea pigs. That was a very tall order! I appreciate them doing that so we could all get away. We love you.

Better than Christmas

We were all excited for Lea and her family’s departure. It felt better than Christmas morning for me and I was beyond excited. I can still feel it as I recall the day she left.

Clem and I anxiously awaited hearing from them after they got on the plane. It was the first time Finn and Ash had ever flown. The year previous, was my girls’ first time, so I know the excitement and anxiety that comes with that. I will also never forget the first time my kids saw the ocean and I couldn’t wait to hear Lea’s experience.

The confirmation of their safe arrival came from a WhatsApp message stating that they got in safe and sound, the place they were staying was super nice and that the kids were already in love with Mexico. The next message I received was that Finn had barfed on the plane and was sick all the following day. And not even a day later, Ash was doing the same (her story about sitting at their a la carte meal at the resort and him barfing all over her was gross to say the least) and my sister claimed to have also been affected by some kind of stomach bug…yeah, can’t say I didn’t see that coming!

Trying to convince her to stay longer

Not fun, but it sounded like they were still having the time of their lives. I still laugh because these were the usual things my sister always had to deal with. Not that I haven’t had these kinds of moments either but it was the norm for Lea to encounter the nightmare situations we all dread (stomach bugs on vacation suck by the way). It was just sad that it took a bite out of the short amount of time they had there.

I’m just going to say that I think my dad started it. He told Lea to stay a second week, I’m sure it was him…and I’m most certain my mom too. They wanted her to stay and enjoy a second week, no matter the cost. I think that we all told her we’d chip in and pay for it to get her to stay.

Clem and I worked on her constantly to see if they would. We all felt like this was going to be the first and most likely last time they were ever going to do this as a family. Seeing the photos and hearing the stories in the odd text we’d get, made us all feel good about them being there and enjoying life. We never wanted it to end.

Moments of normalcy are priceless to some

Cancer and all of its trials and tribulations were suspended in time. It was like they were living without it and it wasn’t happening. That moment of normal meant the world to all of us, especially them.

We received a handful of pictures of them looking like a normal family on vacation, something we hadn’t seen in nearly 2 years. I treasure these photos. They are the reminder of who my sister really was outside of all the bullshit surrounding our usual lives. She was vibrant, happy, funny, quirky, loving and I can’t say it enough, selfless.

They played on the beach, went for nature walks in a sanctuary that was on site, swam in the pools and ocean, and had an amazing time. She was happy. She was able to just be a mom and be with her kids without any and all of the stuff that she was juggling when she was at home. Her children got to see her for purely who she was.

Why was this one last important?

I feel like many of us take the roles of being a mom, a dad, or whomever for granted sometimes (I get it, we’re all tired and stressed and that’s okay…we’re human), but I realized that Lea never had that luxury. Her kids were very young when she was diagnosed and she had to be a cancer patient and Mom, all at the same time. That’s very difficult. Her mind was always on trying to figure out how she was going to survive and not in the moment with her kids.

When under a lot of stress (as we all know), it’s hard to be a laid back and carefree mom (gosh do I ever know this firsthand). You’re not fully present in those moments and what your children receive from and perceive of you, may not be who you truly are. I feel like this trip provided the moments that reinforced exactly who she was to her kids without the cancer because she had left most of that back at home.

And that is why some wish for or make these moments happen because they want better for those around them. It’s an act of love and sometimes a final one. They don’t always want their loved ones to only remember or immediately recall their final days or weeks if they’re suffering, they want to be remembered apart from whatever ails them and for who they really are, in the good times. For many, they just can’t do that at home or in the environment that they have been merely surviving in because of the constant reminder of what they’ve been going through.

She was stubborn and insisted that she was going to come back, perhaps in September or so. She had enjoyed her time so much that she knew saving her money for something to look forward to in the future was worth more than spending it all now. We all wish she would’ve stayed but there was no point in arguing.

A renewal of sorts for her and an acceptance of reality for me

She was sad when they left, but had a renewed fight in her. She had sent me a few things to read, but I didn’t bother her with anything of the sort during her week of vacation because she had better things to do. Of course, she was still in the hunt.

I began to realize not long after I got home that I’d been having this weird feeling, like a gut instinct. My mind wanted to overrule much of what it was telling me because it thinks it’s irrational. That said, I’d been bit on the ass far too many times from discounting this before, and finally decided to take heed.

I feel like I’ve finally learned the difference between what nerves feel like and what gut instinct feels like because they are 2 very different feelings. I had to learn to stop, listen and pay attention and now, I don’t hesitate when I feel that feeling. It has served me well. When I cannot provide the answers my mind seeks and my instinct warns me not to proceed, I listen.

I’m grateful for my gut instinct but sometimes I hate it

My gut instinct was flaring, and I knew it wasn’t nerves. I could no longer fight what I knew was happening, ignorance only lasts for so long. I was beginning to accept what I fought against the hardest, she wasn’t going to win this battle. We were going to lose her, soon.

In a way, that’s when I noticed that the mourning process had already begun. I noticed that the time I was spending with her was of more quality despite what we were doing or experiencing. When I saw her, I really saw her, and when she spoke, I really listened and understood. I was doing more feeling than anything else.

It was a completely different connection compared to what I’d had with her before. Instead of having conversations devoid of any emotion (usual, normal conversations), I felt every word that she was saying. I was much more focused than before and it was like I was memorizing everything about her so I wouldn’t forget.

I saved those family photos from Lea’s trip. I knew that I’d look back upon them in the not too distant future, but at the time, I didn’t know how close the distant future was. If I’d had a marked calendar, would it have made any difference? If there was, I’d say that it probably would’ve made everything much worse.