The Ever Narrowing Path To Death

A continuation of Lea’s story…

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It’s all a blur. The days are blurred into weeks and the weeks into months and there isn’t a single thing I can do about it. It was 3 or so months total if I remember correctly.

Sometimes I wish my mind was like a well-organized filing box that I could easily select the memories I’d like to reminisce upon and know everything surrounding them in exact detail, but apparently that wasn’t part of the package when I was made. Honestly, maybe it’s better this way, and I have come to understand that this is exactly what the mind does to protect itself.

Lea started having pain that gradually increased in intensity despite everything she’d been doing to try and make herself well again. Her oncologist was vehemently pushing chemo, but she had seen the protocols from Massive Bio in the U.S. and requested that protocol, to no avail. Studies showed that the protocol she wanted to attempt, was far more superior for liver metastases than what she was offered here. She was beyond frustrated because advocating for better possible health outcomes here, is just a waste of time and energy.

It’s complicated

Are these studies biased? I’m going to say that more than likely they are. I’ve heard that whoever pays for the study, usually gets the results they pay for.

It’s really not as farfetched an idea that many think it is. This is business. In addition to that, the rate at which this country and its provinces move to approve new therapies and treatments and implement those changes appears to move at a snail’s pace, depending on the cash they stand to make. I’ve often heard that this pace has much to do with safety and the approval thereof, but I call bullshit on that…I think it’s the bargaining process that takes time.

Lea asked for low-dose chemo and that apparently was too complicated to figure out according to her oncologist. She was worried about frying her liver completely in the first round and felt that this might benefit her more. Unfortunately, it was his way or the highway. He wouldn’t even reach out to anyone to inquire either.

Mind blown

I think what really pissed us all off, was around this time, he asked if she’d like to attempt TACE. If you remember, Lea had asked a few months back when her tumors were much smaller but was denied. She could’ve had a chance that that would’ve helped back then, but it was much more difficult now that her liver was basically one large tumor. Talk about a missed opportunity.

Why bother offering it now? Unbelievable. Lea was fed up with her oncologist and his antics. He had zero respect for her and lacked a single grain of compassion. What a dud.

Her health was rapidly starting to decline and she began to spend more time on the couch with her heating pad to help quell the pain, than living what life she had left. She still had kids to take care of and this became extremely difficult to juggle. As her abdomen began to swell once again, we found ourselves back in the same place we were nearly a year earlier.

A one last for us

As time with Lea was beginning to run out, we had a one last moment that was about to occur. I will say that I didn’t think it was actually going to happen because things had become so bad, but it did. This was the last time Lea and I had some happy moments together and I am thankful that things managed to work out so we could share this.

It’s kind of funny now that I think of it, my mom called and told me to purchase Cher tickets just a few months prior. Her justification was that we had to take Lea because she and my dad were going with my two aunts. As this was my mother and she was telling me to do this, Clem got on the horn and managed to secure 3 seats together. At that time, we’d decided that we’d figure out who was sitting where and with whom closer to the concert date.

As luck would have it, we ended up scoring some really good seats, especially compared to my folks and my aunts. Thankfully, no one expected us to hand them over and since everyone agreed that Lea should have the best experience possible, that meant that Clem and I got to sit and enjoy the evening with her all by ourselves. We never had the opportunity to do this ever, so it was a real treat.

I still don’t know how she did it

I’m still amazed that she made it. We had to walk a few blocks to the venue from where we parked, and her being away from that heating pad for so many hours, must’ve been agony, but she made it. I have a photo of the 3 of us sitting together that she took, but the smile on her face isn’t her usual happy one. I fully understand this smile and often feel sad about what’s behind it.

Lea wasn’t strictly a Cher fan, but she’d never experienced a concert of this magnitude. She enjoyed music, but wasn’t hugely into big superstars and fandom, and didn’t really attend concerts. That said, this concert was over the top for her.

I’ll never forget how excited she was when each song came up. For a moment, it was like she’d won the lottery (the cash one). She’d elbow me with her bony arm and start bopping around in her seat, trying to remember the words while enjoying the moment.

Enjoying normalcy

I enjoyed the hell out of that evening with her. We didn’t talk about cancer or death, just about the stage, all of the lights, the speakers, and anything else that caught her eye. I tried to live in that moment with her, one where cancer had no place, but there were some stretches of silence I remember that ruin certain parts of this memory. It’s hard to deny them because those were the things that jolted me back to reality.

I remember saying to my mom in the days prior, that maybe we should’ve just canceled. I didn’t want her to have to suffer and be so far away from home and I felt that it was too late for us to be doing things like this with her. Of course, Lea wouldn’t have it, but before leaving, we told her that if she needed to go at any point, we’d gladly take her. Being who she was, she’d never ask that of anyone and there were a few times where I thought that perhaps we should have just gone home instead.

It was the way she’d shift in her seat, or how she’d turn to stretch or move that told me that she was uncomfortable. She wanted to bring her medication with her but left it at home because she was afraid to take it with her. As the evening went on, her pain and discomfort amplified.

She paid for the good moments unfortunately

At the end of the evening, when we’d normally wait for the crowds to disperse, we noticed that Lea was quite antsy and impatient, which was her usual after having her kids, but this was more urgent. When we finally got out and walked to our vehicle, we knew she needed to be at home, now. On the drive home, there was a lot of excited chatter about the concert, but Lea fell silent not long after that.

I was feeling pretty good when she was actively and excitedly involved in the conversation but that instantly changed once she stopped contributing a few minutes later. It was nearly an hour’s drive back home and as we went on, everything began to feel like it had before we left. The good feelings had dissipated and the dread of our reality had crept back in.

I was happy because the concert was awesome and I’d had the chance to spend some precious time with 2 of my most favorite people in the world, but on the other hand, I was losing one of them and she was suffering. I’m still confused as to how I should feel. It’s really messed up.

Playing the cards she was dealt

The blurring of the memories makes it difficult to discern dates and events, so please bear with me. Shortly after the concert, Lea hit the point where she felt that she had to do something and immediately. She’d gone to another appointment with her oncologist and was met with more dismal scan results and felt it was time to play the chemotherapy card.

I think the oncologist made it clear that he wasn’t going to keep filling her prescription for Tagrisso and that if she was to continue with him, it had to be chemo. She asked for either of the protocols she wanted (again), but he only offered his regimen and said it needed to happen immediately. She still held playing cards in her hand, but they were all pretty much useless by this point.

She was terrified and I couldn’t blame her. After going through chemotherapy with my own child, I feel that we desperately need to find a much better way. I keep hearing about (now) how the cure can’t be worse than the disease and wonder why this hasn’t been applied to cancer treatment as of yet? Many accept this trade-off because they feel it’s worth it to survive (that depends on the individual I think and here’s where that quality over quantity comes into play for me). All I have to go on is what I’ve witnessed, and thus far for me personally, I don’t know if I’d be willing to do it myself…it depends on so many factors that I truly can’t give a concrete answer but I feel like I might actually decline.

I wonder how long before talking about chemo will be taboo?

Yes, I know, my child is still alive because of it but I now wonder how much of it was truly necessary. I don’t think people understand the worries that keep me up at night. Yes, I am thankful and grateful that my beautiful daughter is still alive today, but the future that lay ahead, may be riddled with a lifetime of medical issues, more cancer (or disease) and pain on multiple levels that I can attest could be considered cruel.

They (the medical community) say they have an idea as to what’s possible for her to experience in the future but I feel that because it’s not them suffering it, it is acceptable. I hear oh, don’t worry, it’s treatable or manageable or there are other ways to deal with these things if they do arise (meaning there are more pills, treatments, and surgeries), but every one of their answers, has a trade-off of some kind and usually, it’s another long line with other complications to accompany it. I worry for her future and the quality of life she will have and that’s a difficult thing to try and put out of your mind until or unless it actually happens.

I often wonder about cancer survival statistic accuracy and as I’ve said before, treatment statistics. It’s why I always say that we are all different and every single outcome varies because we are all unique. I had to take the road less traveled, filled with all of the bumps and atrocities along the way to realize this. Believe me, this is also not as farfetched an idea as society has been led to believe, and finally becoming aware of this comes at the cost of being ridiculed…what a fucking tragedy.

Past the point of no return

Lea was most certainly too ill and frail to even leave her house let alone the country to seek treatment elsewhere and she knew it. All of the cards she thought that remained in her hand, couldn’t and wouldn’t help her now. It was too late.

She knew that chemo was a last-ditch effort to try and shrink the tumors within her liver and she hoped to possibly get herself to the point where she might be able to leave the country or try another treatment option. She decided to try and maximize the chemotherapy by using hyperthermia therapy in addition to everything else while simultaneously assisting her body in reducing the harm. As Lea was preparing herself, my youngest daughter felt inclined to ask her aunt if she could speak with her.

As I haven’t touched on what Caelan went through yet, I will say that she is very mature and wise beyond her years. Cancer changed her at a very young age, drastically. She may have been young, but her understanding at age 6 was that of a mature, level-headed adult, and I was shocked at how she handled it all. We had our moments, but I realize that because of her grasp, these moments were probably less of a challenge than they could’ve been.

Caelan’s gift

Caelan wanted to share her experiences in regards to chemotherapy with Lea. She had never said a peep about it before but knew that she had a connection with her aunt that none of us had. She knew the fears firsthand and wanted to answer any questions that Lea might have had. As she is a selfless young lady, she wanted to extend her kindness in the hope that she could bring Lea some peace.

It was near the middle of June and Lea was pretty well confined to her couch and heating pad. Her chemotherapy date had been set and we all waited with hope that this would buy her some time. Clem called her up one day and asked if Caelan could drop by for a little while so that they could talk. It was her niece, so of course, she had time.

I wanted to be there to support Caelan and Lea but decided that this was something that needed to be between the two of them. As it was, Lea was still trying to deal with her kids, so I don’t know how much she got out of the conversation. I remember Caelan packing up the small journal we’d kept during her cancer journey and jumping into the car with Clem. I think that she finally felt like she served a purpose within Lea’s journey.

Chemo in regards to kids really isn’t all that different

If you were to ask my mom, who was hovering in the background that day, she’d tell you it was an emotional moment. If you asked Clem, he’d tell you that Lea’s kids wouldn’t leave Lea and Caelan alone, so I don’t really know if it did much. If you were to ask Caelan, she doesn’t really have much to say about it. I think she was just happy to help because that’s just the way she is.

I was touched by my daughter’s willingness to reach out. I think there are many who are afraid to do so and I can appreciate what Caelan did for her aunt. I think the reason this moment sticks out in my mind is that I sort of discounted what Caelan had to go through and with kids, it’s allegedly different, according to the experts. In regards to that, I disagree, it’s not any different, it’s just that perhaps they can’t communicate things as well and of course, they’re young and bounce back quicker but it’s all still the same in the end.

On the day Lea was penciled in for her first treatment, Clem and I met her in the parking lot of the kids’ daycare. I was there to pick up Finn so he could wait with the girls and me until the school opened 15 minutes later and Clem and Lea were leaving for the hospital from there. Lea had just finished dropping Ash off at the daycare and I remember wishing her luck and reassuring her that I had the kids and not to worry about hurrying back because they’d be fine with me. Caelan presented her with a little gift she’d been working on the night before, it was card she’d made, welcoming her to the club…the chemo club.

I hate cancer

Although Lea was tired and still in pain, but she was still like her old self. When I look back now and consider how she was shortly after she’d had one round of chemotherapy, I realize that there was a drastic change. Was it the chemo or was it cancer? I feel that the trajectory that she’d been on prior to, wasn’t nearly as steep.

My folks had made their way back to help us all out around the time we had anticipated Lea’s immune system to tank and the side effects to really kick in, especially the fatigue, a little over a week later. She actually didn’t do too terribly at first, but once it began to sink in, a fever made itself known. If you’ve had experience with chemotherapy and cancer, you’ll know that this is something you hope to avoid.

Lea ended up with an elevated temperature within the range she’d been warned about, but it teetered on the cusp (our experience with Caelan in regards to fevers during chemo was very different). That’s when the fun began because we entered a game of do I go or don’t I go to the emergency room? After having to make how many trips to the bloody emergency room before, believe me when I say that you want to avoid it at all costs. The hours of waiting, only to be sent home no further ahead but you had no choice because the lady at the other end of the phone number you were told you had to call if these situations arose, explained that you had to go and they were waiting for you, is beyond daunting.

An E.R. visit we’ll never forget

All I can say is blech, Clem took Lea in, begrudgingly…just in case. She said she felt fine (what the hell is fine when you’ve had chemo?), but they weren’t taking any chances. This was a very different situation than what we’d experienced with Caelan and I will talk more about that when I get back to her story shortly, but things need to change and that’s all I can say.

Patients who are immunocompromised, shouldn’t sit in an emergency room full of sick people, and yet, this is where they’re immediately sent to sit and wait for hours (will this change after Covid…I doubt it). Makes sense, doesn’t it? Especially when you hear that there are cancer patients who die from acquiring infections (C. diff anyone?) that their body cannot fight because their immune system is completely wiped out and they die because of that and not the cancer they had (a friend of mine lost a friend a few years ago who beat leukemia but acquired C.diff from the hospital, and it killed him). So technically, was it cancer that killed them, or perhaps complications due to treatment?

Anyway, after a few hours of listening to an individual insist that a certain nurse needed to change his full diaper (it didn’t appear that this individual required lifesaving medical attention and was seeking perhaps some sexual attention according to what was overheard and they couldn’t apparently refuse them…they send dying people home as I’ve seen, but they can’t in this instance…baffling), Lea was sent home, yet again. In our family, we don’t like to utilize health care unless absolutely necessary, and being told that you have to go and tie up emergency rooms unnecessarily, pisses us off to no end because people who desperately need it, die. Regardless, the system here doesn’t work and no one is willing to correct any of it…seriously, where are the adults?

I don’t know how people survive this insanity

From this escapade, I have another photo of Lea sitting on a hospital bed in the emergency room, knitting. Clem sent it to me. I don’t know where the scarf ever went, but she was very pleased with her handiwork, something my mom got her into just a few days prior to help keep her mind and hands busy. Again, I love this photo because it’s her, but I hate it at the same time.

As I sat at home, late that night with my girls tucked into their beds and finally asleep (after spending 2 hours trying to convince them that their aunt would be alright and that their dad would be sure to wake them up to say goodnight and tell them that he loved them, followed by a hug and a kiss on their foreheads), I wondered how many more of these nights we’d encounter. I worried that the care my sister was receiving wasn’t followed through on, nor of good quality. It made me consider how many people actually died of cancer or of the system itself and the damage they inflict. It’s all careless in my opinion.

Clem rolled in around 1 a.m. He and Lea felt deflated and I think this was when we realized that we were all on our own and running out of time fast. Clem is a very tolerant man and will defend people to no end, but even he was feeling angry about how things had been and were being handled. More time away from family equals more time wasted that Lea didn’t have.

The path

As the days progressed, Lea’s eyes began to turn yellow, as well as her skin. I can’t remember when the itching had started, but it was becoming quite clear what was going on. She was heading down the path of liver failure and I don’t think the chemo helped this at all.

This protocol is known to be hard on the liver and without it being functional, the chemical that they put into Lea’s body, wasn’t going to be excreted well. I ask then, what truly happens to the human body in this scenario? Was it worth going through the treatment if it was going to shut her liver down and cause even more harm? I’m going to say no, but Lea was fighting for her life and for her kids.

Why is it that we don’t have anything better beyond this point? I don’t think the treatment has ever changed at this stage of the game, ever. Perhaps we need to go back and overhaul chemotherapy, could a lower dose be better for those who suffer the same as my sister had? In my mind, something happened after that lymphangiogram (I don’t believe it was solely cancer) and to me, it seems that her liver was almost cut off from what was going on in the body…why was that?

Acceptance of reality

I knew that it was only a matter of time before she’d die but she was young, and young bodies can take a lot before succumbing. I had witnessed this the summer before. I don’t think the medical community takes this into consideration, especially since I know of people, other than my sister, who had been affected by cancers (that according to the medical literature is exceptionally rare) that killed them at a very young age (my siblings or myself went to school with or knew these people from my hometown and they include a 30-31-year-old who died of breast/ovarian cancer, a 36-year-old who died from pancreatic cancer [if I remember correctly, I believe they ended up putting him in a coma because they couldn’t control his pain], a young lady in her mid 20’s who died from a brain tumor and I know I’m missing some but I don’t remember their ages [they were all well under the age of 50] and I won’t even get into how many had cancer and survived). Death does not come easy for the young afflicted with this illness sometimes, do they understand this?

I had begun to hope for the painless and humane death that I’d read that might accompany Lea’s failing liver. I feel fucking horrible that I wanted her to lapse into a coma and pass away unknowingly because I couldn’t handle her suffering anymore. I felt and still feel terrible for wanting these things for her but I knew that there was no more that could be done.

Her young sons were witnessing this suffering, what were they thinking and really at that young of an age, did they even understand? How will this affect them later on in life? The realities of life are harsh, and nothing is predictable as I’ve learned, and sometimes, I fear the future.

I never thought I’d be the type of person who’d consider death and dying this way, but where else do you go from here? There’s only one path, and in the end, you must take it. I absolutely dislike not having options, especially when faced with something like this. It was death either way, and I worried if it was going to be merciful or horrific.