How do you say goodbye? I’m ashamed to say, that even I don’t have an answer to this. I should, but I don’t. And honestly, I wish I could’ve had a few more kicks at the can, but I can’t.
I think reality really began to set in when Lea started to talk about seeing her previously deceased and beloved pet dog. Long story short, he started out as her dog but ended up with my parents, who took him in as their own and loved him until the day he died about a year before Lea’s passing. As Lea’s health declined, she began to talk about him sleeping at the end of her bed and how much of a bed hog he was. She was annoyed by his piggishness but didn’t seem upset by his presence, it was sort of welcomed and not alarming to her.
I can say for certain that this was a sign that she was not going to be with us for much longer, especially when previous lost loved ones began accompanying the dog. I think her fear of death had been replaced with acceptance and she had this calm about her that is difficult to explain. It could’ve been the exhaustion or perhaps the drugs, but it makes you consider or perhaps reconsider what happens to us when and after we die.
Sometimes we are left with no other choice but to Google
I’ll never forget the day that she showed me her stomach. I think it was around the time of her first chemotherapy session and I was shocked at what I saw. Lea’s abdomen was stretched and grotesquely shaped in an odd sort of way (more protrusion on the right side), due to the accumulation of ascites and growth from cancer in her liver. The purple mottling that covered her skin was alarming to me, as I’d never seen it before.
I knew as soon as I saw it that it probably wasn’t a good sign (and yes…Google gave me way more insight into this phenomenon than what a living, breathing health care worker did…and yet, they don’t want anyone to look anything up…I wonder why?). Lea had asked a nurse about it at her appointment and of course, they told her it was normal and nothing to worry about. I think they told her it was normal for all of the heating pad use she’d been doing, which was pretty well all of the time.
When Clem and I reflect back on these times, we wonder if it would’ve killed any of these health care workers to perhaps be open and honest with us. We can say with complete honesty, that this is where much of the damage related to our distrust in medicine has occurred. I have to mention this because no one understands until they’ve gone through some of the things we’ve encountered.
I seek to be understood
Once you realize the truth and the betrayal that usually accompanies the lies, there’s just no going back. You become a cautious, untrusting skeptic for life, and believe me when I say that if you become this way, you will be meant to feel like you’re crazy because people are made to think that you are when you truly are not. Your life may absolutely depend on the questions you ask, that health care workers refuse to or cannot answer and if anything, please don’t forget that.
I refuse to apologize for calling attention to all of the things we witnessed. I know it will never matter because I feel that the people working within these very factions that are doing these things are not capable nor willing to change. That is going to come back to bite them in the ass, in fact, I think it already has. I don’t know if they’ll ever gain trust back, and that is the very basis from which their industry was allegedly supposed to be based upon…and apparently, that was a lie all along too.
Approximately 3 weeks after her first chemo treatment, Lea was informed that she was unable to continue. Her liver was shot and there was no way the oncologist was going to move forward. All I remember about the appointment is the anger and disappointment afterward.
The end of the line
No one was impressed, and I understand that maybe she should’ve started chemo sooner, but I honestly don’t think it would’ve made any difference. In hindsight, I think it could’ve possibly taken her to the grave sooner. We were officially at the end of the line, and there was nothing else left to offer her except…immunotherapy.
The anger Lea felt, stemmed from this oncologist sticking to a one-track treatment plan and nothing else. He’d lied from the beginning and said he’d be willing to look at other options and assist in guiding her but he had no intention of doing anything of the sort. Was this his own laziness or his unwillingness to actually help someone? I guess we’ll never know, but Lea did manage to find some things on her own and thought he would’ve had more options available in addition to what she had found or at least help her to get to where she felt she needed to be.
His final card was immunotherapy, and even he didn’t think it would work. Sounds like his plan is a real winner. I’d like to suggest that perhaps he seek out other lines of treatment, tailored to each of his patients, or perhaps he could attempt to try not to kill people instead of just ignorantly repeating the same bullshit mistakes while lining his pockets because I’m sure he knows what not to do by now. How the hell does this guy live with himself?
Life’s a play according to this oncologist
At first, they didn’t even mention immunotherapy, not at all. Lea and I knew from reading that many people end up down this path eventually and knew this would most likely be offered as a last resort. The oncologist came across like it was an encore magic trick, the same as what a magician keeps in his back pocket, unbeknownst to the audience, and only he knows he’s going to produce it after everyone believes the show has ended. We already knew the spoiler but he had Lea convinced that he wasn’t going to offer it and he played it all out like this was some sort of act in a play.
The oncologist left the room after he broke the news to my sister that she was at the end of the line, but returned a short while later and said that she could try immunotherapy. It was almost like he was being completely honest, that there was no hope from here, but decided to add to the drama and come back after taking a moment to Jekyll and Hyde in private, before emerging in character, as the part of the savior. I wasn’t there, but I’d met him a few times and wouldn’t put it past him that he was a little sociopathic…just a little. Perhaps someone should inform him that he’s actually the villain and not the savior he believes himself to be.
Obviously, Lea jumped at the opportunity. She and I had read as much as we could about immunotherapy and were convinced that this could possibly save her life somewhere down the line, but this was a consideration we’d had near the beginning of this journey. Of course, by the time we arrived at the point of her actually undergoing immunotherapy treatment, much of what we’d known had changed.
Reading about other’s experiences is a good thing
There were more people using this form of therapy at this point, and it appeared to me, that it was being implemented earlier which I think may possibly have helped to bolster some of the results because this wasn’t being used previously until it was a last resort. Even so, it still isn’t the magic bullet the commercials on TV want us to think it is. One of the websites Lea and I belonged to for patients with lung cancer, had stories from patients or their families, that wasn’t as promising as we’d hoped, especially when I’d found the comment from a physician who’d lost someone and was commenting on the fact that people weren’t being fully informed about these drugs.
I felt bad for the guy because he was just relaying his experience, which was obviously still very raw and painful, but he felt compelled to issue the warning after everything he’d witnessed and learned. I appreciated his comment, but many jumped all over him instead of taking the time to consider what he’d experienced and too late. I understood where they were coming from, a place of fear. This treatment gives them hope, and they think that they’re an extra step away from death if they have this available to them, but in reality, this may not be the case.
I’m certain many of you have seen the immunotherapy commercials. The ones where people are out living a normal life despite being at the end of the line in their cancer treatments. Yeah, I highly, highly doubt many people look like these actors by the time they hit this spot in their cancer journey.
I absolutely despise pharmaceutical commercials
My sister looked like the walking dead. A stick human with a swollen belly (just like she was pregnant), and not the carefree, enjoying life to the fullest person that these actors are attempting to portray (I might also add, the actors were much older than my sister as well). I am sure there may be people out there who look like this and perhaps derive benefit from these drugs, but I have yet to find one…not that I personally know of any either.
As soon as Clem text me what they were going to attempt, I began pulling information as quickly as I could. They’d decided that Opdivo (Nivolumab) was the drug of choice. Of course, the pharmaceutical industry attached the words new and hope to every one of their articles about this form of therapy, but as I’ve read and experienced, that’s a little overly optimistic. As I’ve said before, it works for some but not for all, and from what I see, remission still isn’t permanent in those who respond very well, if they do.
I believe they ran more bloodwork before leaving the appointment, and set a date for starting Opdivo, a week and a half later. Lea was still getting up and helping with the boys here and there, like getting them snacks and helping to get them ready for bed occasionally. She wasn’t completely couch ridden at this point but she was really starting to struggle with managing her pain and be an involved mother. My folks were staying with her to help with the boys and to take care of her because she wasn’t able to be fully involved all of the time.
Our last hope
Lea’s immunotherapy treatment was on July 10, 2019. She had her treatment and came directly home afterward, unlike her first chemotherapy appointment. After her first round of chemo, she’d gone for a hyperthermia treatment which required her to lay on her back with a very hot heat lamp type of thing, focused on her abdomen for approximately 45 minutes.
Clem was there with her, and he will tell you that she was in agonizing pain the entire time, which prompted him to lend her his hand to hold while she fought through it. She was exceptionally tough, but this was traumatizing for Clem. Secretly, I think he was happy to be able to get her to treatment and back immediately without having to see her go through that again.
I can’t remember if I’d read anything in regards to Opdivo and its effects on liver metastases or if there was anything to be found. What I can tell you is this, the side effects can be very debilitating. When they’re as debilitating in someone this frail, I don’t know if it’s even worth doing. That’s just my feeling now, especially because I value quality over quantity of life after seeing this.
Her beautiful eyes
I remember going to see Lea the following day and she was shuffling through the kitchen to take a handful of pills and of course, more laxatives (she couldn’t eat but they made sure to keep getting her to pound that shit back to no avail) when she stopped and got nose to nose with me in the entrance to her living room. I found myself staring into her glassy, yellowing eyes and realized that they were nothing like the beautiful, bright, chestnut brown ones she’d been gifted at birth. I think back now, to when she always said she hated the color of her eyes.
I’d always disagreed with her. My brother’s eyes are hazel and mine are sort of a greenish grey, but Lea had these beautiful, deep, rich with color, chestnut brown eyes that were absolutely stunning if you actually looked. I despise how society sways our opinions on beauty and I feel that celebrating the uniqueness of our own individuality and our natural state of being, would go a long way for us as a civilization. That’s validation, and that’s medicine too, in my book.
Lea stood still and asked if her eyes were still yellow or if they appeared to be clearing up. Honestly, I couldn’t tell, it seemed the same but I did notice something. I just couldn’t put my finger on it.
The death spiral
Right around this time, Lea began to lose track of time and started to get her days and nights confused. The pain medication she was prescribed, made her head feel really messed up (her words) and she hated it because she felt like she was wasting precious time with her family that she desperately wanted and needed. Her beloved predeceased dog began making more appearances and was now accompanied by my most recently deceased grandparents (my mom’s parents).
My mom and dad would get up with Lea in the middle of the night so she had someone with her any time she was awake. They didn’t want her to be alone and they wanted to make sure her medication was kept track of. She would often be anxious and desperate while watching and waiting for the clock to turn in anticipation of the next pain-relieving dose, as the medications began to lose their potency. We were back to needing better options for pain control again.
The next day when I saw her, it became obvious what I was noticing. There was a drastic change in 24 hours and it’s not as crazy as it sounds, there were things happening. She appeared to be losing more weight and becoming much gaunter in the face. I realized that she wasn’t getting any better after the Opdivo.
Immunotherapy is potent
She again got nose to nose with me and asked if I noticed less yellowing in her eyes but nothing had really changed. I wanted so badly to say that I definitely saw a change and for the better, but I hated myself for having to answer that it was the same. Her skin, however, was definitely turning more yellow.
I can’t remember which day it was (I believe it was the 3rd day after taking the Opdivo), but I’d popped over for a short visit and Lea had been extremely nauseous. No medications would help at this point, and I remember her sitting up on the couch with a bowl in her lap dry heaving. She was hardly eating anything and still trying to drink the disgusting PEG concoction, so she really had nothing to vomit.
We all knew that immunotherapy was the absolute end of the line, and I think we all knew that it wasn’t going to provide any benefit whatsoever. Lea felt that she had to do everything in her power to live for her 2 boys, but this was cruel. I’m not certain when she asked Clem to make the phone call to Massive Bio (I’m guessing maybe a week before she died), but she finally did.
She was still fighting
She wasn’t finished fighting yet. She was now focused on waiting for the package from Massive Bio with what she’d hoped would be the key to having more time with her kids. She just needed to fight a little bit longer, just long enough to determine what treatment she needed for whatever mutation she now harbored.
She had pretty well become couch ridden and slept on and off while desperately clutching her heating pad. She wasn’t getting up as much and the boys were being cared for mainly by Wade and my folks. My own children wanted to be with their aunt when they could, but they were already distraught and having difficulty seeing her in this state.
I remember going to Lea’s one afternoon, and at some point, Mom and I were the only ones in the house with her while she was laying on the couch. I think I had just finished repairing a tear in one of the cushions of one of her chairs when Lea began to talk about the signs she’d send us after she’d passed. We hadn’t spoken at all about death and this was another telltale sign that the time was certainly close.
Spiritual direct messaging in the form of honey bees
She wasn’t upset when she spoke, in fact, we had a good chuckle but I wanted to leave as soon as she mentioned it because I wasn’t ready. I knew that I’d never be ready, and I wanted so badly for the conversation never to happen and to be able to feign death because of that. I know what you’re thinking, ain’t that some mighty fine denialism…yes, it was.
I believe I was ranting a little bit prior to this, discussing how my garden wasn’t producing as I’d hoped because of my lack of honey bees. Lea’s garden was amazing that year and she kept telling me I babied mine too much. She thought it was funny that I worked so hard on mine and it was shit, and she did nothing at all and it was the shit. Yeah, we’re not all born with green thumbs, Lea.
Anyway, after she had her fun insulting me and my perfectionism, she looked at me and said that after she died, she was going to send me the beloved honey bees I adored and desperately needed and to know that when I saw them, I was to know that that was her. I didn’t know what to say, so I just sort of said that as long as it wasn’t a swarm of psychotic stinging killer bees coming after me, I’d appreciate that precious gift more than anything in this world and that I’d be thinking of her. We shared a brief moment of laughter before she paused and looked at Mom.
Heart-shaped rocks with messages attached
It was dead silent in her house. The three of us rarely shared many moments where it was just the 3 of us, so to me, this was where she was truly saying her goodbye. There were no kids up our asses about needing things, no phones ringing, or any other distractions, it was a rare moment of peace that the 3 of us shared that day.
Lea told Mom that she needed to put a big rock in the new yard that was about to become her new home. She told her that when she wanted to think about her, she should go outside and sit on this big rock and do just that. She also added, that if she had to, she’d throw heart-shaped rocks at her head, and that was a most definite sign that she was there with her.
We joked that there was going to be a bunch of heart-shaped boulders falling from the sky, hitting us on the heads, and knocking our asses out, followed by swarms of stinging killer bees attacking us because of mixed signals within the universe. It was a good moment for us and one that I most certainly won’t forget. I had no idea how to even respond, and it’s weird to think now in hindsight, how the moment perfectly presented itself and then passed. Not even a few moments after we finished laughing, the kids were back and wanting something.
Life is interesting, death, even more so
I wanted to tell Clem about our conversation but had to wait until I knew I wouldn’t break down in front of the girls. I knew, she knew, we all knew, her time was almost out. She was making sure we knew how to find her once she was gone, and now, we knew. She was very forceful of that and made damn sure we understood.
Believe whatever you want to believe, because it’s all unique and special to each one of us. I don’t believe in a higher power but still wonder about the potential possibility of what lay ahead. I’ve experienced some interesting things in my life and wonder about the capabilities of our own being. We are energy after all, if it’s neither created nor destroyed, where does this energy of our being go?
Not long after this conversation, things really went south. From the time of her first chemotherapy treatment to this point, it seemed like her decline became fast and very steep compared to what we’d experienced before. Was this because of the treatment or the progression of her disease? Either way, I’m certain that treatment sped up the process.
I’ve vented before about how cruel and barbaric the medical industry is but I had no idea just how far that inhumanity would extend until my sister’s final days. My life has changed entirely after witnessing this, and I swear to commit the remainder of my days to ensure awareness and assist in making the changes necessary so that others avoid the same fate. I promised Lea that I’d tell her story, but I know I need to go one step further than just ‘bee-ing brave’ about doing that and actually help to ‘bee the change’.