As I watched her drink olive oil from the one cup measuring cup, I attempted to rein in my gag reflex. This could be considered bona fide torture. I could only imagine how fast that was going to rip through her intestinal tract before making a swanky appearance within moments.
As Lea put it, she wasn’t going to deal with this sitting down…er…I should rephrase that, but I won’t. Ha! She was going to do absolutely everything and anything possible to beat her cancer and beat it good…as we say in hillbilly speak. I wasn’t so sure about tossing down a cupful of olive oil in one sitting, just to meet a fat intake requirement for the day, but there we were.
We’d had a delicious home cooked meal that included salmon and a bunch of other wonderful sides but Lea had thrown herself into the realm of everything keto. She had her salmon with some baked asparagus covered in olive oil and a few seasonings, with an entire 1 cup measuring cup full of olive oil. Kind of makes my toes curl just thinking about it. I’m not an olive fan and drinking oil, even now after experiencing the keto diet, still isn’t appealing to me.
Keto and research
We were all together just before our usual Christmas shenanigans, which were again held at Lea and Wade’s place. We knew that the lung tumor had stopped responding to her first line of treatment, and radiation was the only thing she was offered. Tattooed and ready to start after the holiday, Lea began to implement the keto diet to try and give herself a leg up.
There wasn’t much we could find about how keto would affect lung cancer but Lea was adamant about trying it anyway. She and I spent hours a day reading everything EGFR NSCLC (Epidermal Growth Factor Receptor Non-Small Cell Lung Cancer). We read as much as we could and would compare notes daily. I spent time reading during the day while the kids were at school and if I sat down, I did some more.
Reading, re-reading and reading some more, then discussing the questions that would arise and why they hadn’t been answered, or why certain questions hadn’t even been asked in the first place, were the topics we’d explored. Where you’d read one opinion, there was sometimes another and on and on and on. It never ended and there was no definite answer as to how to cure this form of lung cancer, especially within the demographic that my sister fit in, which is considered rare.
Enough with the rare shit already
I know, I’ve said it before, I absolutely despise the term rare. Any time I’ve encountered the term rare within the confines of medicine, I call bullshit. I know that there are some rare things that can and do occur in this world, but the stuff they seem to deem rare, is far too many things and just demonstrates their ignorance.
In the last decade of my life, I’ve had one too many rare encounters. I’m certain that many of you out there can say the same, or at least admit to encountering at least one event that’s been labelled as rare. I haven’t had to go far to discover another who can claim that they themselves have also encountered a rare occurrence at least once in their lifetime.
Case in point, this is within the ‘rare’ medical realm. In addition to my sister acquiring lung cancer and dying in her 30’s (rare) and my daughter getting a less common form of Non-Hodgkin’s Lymphoma at age 6 (they don’t call this rare, but it doesn’t appear to happen all that often, especially in girls), I had a cousin die of synovial sarcoma at age 30 (not certain if the tumor was in her heart or her lungs). Yea, real rare. I also had a cousin, second cousin I believe, who hadn’t smoked in decades, also die of lung cancer, after surviving an aneurism…isn’t that rare?
Let’s be honest
I’m beginning to wonder how many out there are considering that this rare bullshit isn’t all that rare at all. I wanted to make mention of this because rare appears to come into play within the medical realm often, and depending upon what spin they want to put on it, seems to dictate whatever their desired response. They seem to do it too often as of late to quell fear, and that isn’t right either.
I’m just saying that when looking at the term rare within a medical setting, one should actually be able to distinguish its true rarity. It’s difficult when you can’t actually see for yourself and have to accept another’s word (which may or may not be honest). I’ve have had another experience where something allegedly ‘rare’ did occur, and it was brushed off.
In my instance, it fit every single criteria to be reported (at medical faculty insistence), and was told upon investigation (of course) it was something else (I know what I saw) and that they weren’t reporting it any further. This rare occurrence is actually more common than they care to admit and yet they chose to acknowledge it as something other than what it truly was and then ignore it. That’s my experience with it all, and that’s my rare spiel.
Sharing isn’t caring any more, it’s controversy
I ask that we all keep this in mind because even if you haven’t experienced something like this, many others may in fact have. We as a society, seem to be silenced in regards to not being able to talk about the important things that happen to us, especially medically, because it now appears to be labelled as controversial. This shift is quite concerning to me because I feel that certain information should be freely available and not concealed for the betterment of society.
All I can say is this, the sharing of our experiences and stories has always been vital to the survival of our species and we are now cutting ourselves off at the knees with this behavior…actually we have gone well past the knees and have cut ourselves off at the head. That’s how I see it lately. Negative individual experiences within this realm have become taboo to discuss.
Other’s will blatantly deny that these things are happening (because they haven’t experienced it, don’t want to see it, or don’t want to admit it…that’s all I can figure) despite the alarming rate of occurrence. Hmmm. Now why is that do you suppose?
As I’ve mentioned before, educating oneself, isn’t a bad thing. I’m not saying read, diagnose and treat yourself, I’m saying it doesn’t hurt to be aware at the very least because we should all play a role in every aspect of our own care. We know ourselves better than anyone and I think that’s vital.
With that said, it’s very difficult to find much information that’s dependent upon a rare occurrence because many doctors don’t always encounter these things on the daily, and there are only so many of them. Most of the information out there regarding lung cancer, is based on folks who are much older and with my sister just into her 30’s, one had to wonder what information actually applied. In knowing that, we knew that the oncologist didn’t have much to go on either, and that’s not such a far stretch from the truth, if you think about it.
We felt somewhat prepared for the radiation treatments, but felt uneasy about the future. Who knew what it held 1 year, 2 years or even 20 years down the line. Its effects still aren’t fully understood.
Could these treatments affect her if she made it that long? We were hoping for the absolute best because we wanted Lea to be that one in a million so bad, but we had no idea how to work the magic in becoming that one. The oncologist was of no help either.
On choosing alternative medicine
I guess this leads me to make the explanation as to why she decided to incorporate some alternative methods. I just want to say again that I was fully committed to modern medicine, and it was the gospel before all of this, but I’m not rejecting it all entirely either because we still need some of it. I used to start with the medical methods first, but when those failed to help me deal with some of the physical afflictions that I’ve encountered in my life, I too turned to alternative treatments to try and help myself (sometimes it worked and sometimes it didn’t). I don’t think that’s too far fetched for anyone who is looking to solve an issue when they’ve run out of options.
I will say that modern medicine is far from perfect (alternative medicine too), and it has its place, but ultimately, it eventually ends up failing many folks at some point. In a valiant effort to save their own lives, where else can they turn? There are many harsh critics out there on anything other than modern medicine, and as I go on, we can’t deny that both have their issues.
This is in regards to Lea. Taking money from a dying, young mom with 2 young children and not giving one iota of a fuck to listen, respond or allegedly treat in a timely and organized matter (alternative medicine), is just as bad as, someone (oncologist) who pushes their scientifically proven and mandated treatments full of promise, which are well known to eventually fail, maim or kill, while offering false hope in more garbage, and then pulling the rug out from under the dying patient at the last minute when finally confessing to having nothing else to offer after the damage has been done. It’s all shit. If I may say, these are both criminal, and yet we accept one more than the other because it’s deemed as credible ‘science’. Both realms desperately need some overhauling with a focus on truly making lives better period.
If it looks like shit, smells like shit, and feels like shit, well then by golly it must be shit! It’s all shit and it’s only getting shittier. And while we’re on the subject, not every person who presents themselves to the hospital looking for help, has shit problems…as you’ll soon see. Sadly, this is where all of the focus has seemed to have shifted as of late…to shit.
There are only so many treatment options for lung cancer and Lea’s first line was failing. She really felt like she had nowhere to go, other than radiation and chemotherapy after this and at the time, chemo wasn’t deemed to be very effective. Not sure if it is now, but it did nothing for Lea after everything else failed. She was trying to be proactive.
Empowerment is medicine too
In watching my sister attempt to navigate her journey, I choose not to criticize anyone who has chosen what they have felt is right for them. I am not them. When someone is dying and attempting to do the most normal human thing, which is to fight to survive, who am I to judge? Who is anyone really?
If my sister wanted to change her diet in addition to her medical treatment, who am I to stop her? It’s not like she was going to drink battery acid and eat nails every single day, as some people will have you believe (they make it sound like you’re going out and taking other’s lives the way they carry on). Even then, I’m not in her shoes and I can’t tell her what to do and why would I?
If she asked my opinion, I’d try to give an educated one. Honestly, what’s that these days (educated in making a profit, or actually educated within the realms of real science…hard to differentiate within the medical literature in this day and age)? It’s a valid question.
Be there or be square
Reflecting back, she was looking to just have someone in her corner, educated opinion or not. Lea just needed a hand to hold and someone there to listen. Knowing what I know now, I should’ve spent less time in the books and more time just being with her in the little time we had. That said, Mama didn’t raise no quitters and this was a difficult thing to walk away from, even if we knew our efforts were futile.
Christmas came and went, with Lea trying to learn what she needed in this new way of eating. I felt bad because we were all enjoying homemade treats while Lea sauntered around miserably while trying to avoid partaking. Again, I do believe in quality of life, and I understand that keto takes a while to get into and maintain, but I always hoped that she would enjoy life whenever she could. No one knew when her last Christmas or family gathering would be, or the last time she’d ever indulge in lemon meringue pie.
It’s all about the little joys in life.
Dealing with an oncologist with selective thinking
Lea’s radiation treatments started right after the holidays, on the 27th of December, and she had 10 total. Each day, she had to go for her 9 a.m. treatment, except for the day their machine went down. On one of her trips, I took a turn to go with her, and that was the day she met with a nutritionist to discuss her new diet plan and fasting.
The nutritionist was actually quite helpful and supportive, and that made my sister feel a little bit better, as opposed to how her oncologist was making her feel about her choices. The only thing he was ever in agreement of, was following everything he recommended and nothing else without question. The rest was all bullshit and unsupported scientifically in his opinion, if it didn’t agree with his protocol (most of the information was from credible medical sources, the same he used, but from different countries who had a higher prevalence of this type of cancer). It was his way or the highway, even if other countries were trying different things with better outcomes in regards to Lea specifically.
Honestly, you really have to advocate for yourself when you’re ill and knowing what’s going on all over the world despite what Health Canada (for instance) says and mandates, may be beneficial somewhere down the line. I also think that the full list of honest possibilities (from the oncologist’s personal experience, not from the pharmaceutical company’s script) should be shared in regards to said treatments, so people can decide what kind of quality of life they seek. Lea always referred to what her oncologist had to offer as standard of care and she felt that this was best summed up by saying that it was leading most to slaughter. I hate to say this, but in her instance, she was correct.
Reading medical literature & investigations thereof
I am supportive of verifying information within medical literature and have even gone beyond that. I’ve often researched who was involved and wasn’t surprised by the outcomes I’d read depending on who wrote it. It’s not just where the information comes from and how credible it is, but also the individual or team and what or who they’re affiliated with or work for. We’re human, and we’re biased depending on what carrot is dangled in front of us, but medicine shouldn’t be this way, humanity first.
They say that lung cancer doesn’t get the big bucks in regards to the development of treatments. Wow, they just admitted that money talks, yes it does. It has been openly admitted that lung cancer hasn’t had the advancement that other cancers have had because of stigma.
The stigma alone that hangs on a lung cancer diagnosis as being self-inflicted, apparently inhibits treatment development and doesn’t bring in research money (more on that topic later, but I do not donate money in support of research and I’ve seen a ton of cash go towards different places who do support lung cancer research, so I think they may be fibbing). Sad. No one deserves to suffer, regardless of what they’ve chosen to do in their life, and hopefully by now, many are learning that you don’t have to smoke to get this horrible disease.
In fact, many young, non-smoking women (and men) are falling victim. I won’t even get started on gender bias within the medical realm. Hell, it seems like they have a bias against every one of us non-medical folk and love to label us as crybabies when they can’t figure shit out, as I keep hearing. It makes me sick, and I’m not saying all medical people are like this, but I’m hearing a lot of it.
I often wonder about how this bias played into my sister’s care. She always asked her oncologist questions and I wonder if he treated her the same as how I keep hearing how many women are treated by the medical faculty. Did he just see her as an annoying, whiny woman (that’s what they call us)? I’m certain many reading this have either experienced this or has heard of someone who has been treated this way because in all honesty, it’s not as rare as they say it is.
My apologies for the ranting. This is the time in Lea’s life where shit started to go sideways and we were all left floundering. I understand that by her reading and sometimes taking things into her own hands may not have been smart (I don’t really think it mattered, she was going to die anyway), but what do you do when you find out that you don’t actually have a voice and where they’re leading you, isn’t the path that you feel you should be following?
Be the change
Imagine yourself never having a say in your care to begin with, and when you ask what should be simple questions, you discover that the ear that was openly offered, was only there as a prop to gain your trust in order to just march you to the slaughterhouse. If Lea’s oncologist used her case to better himself in the future, I’d have more respect. They just continue to follow their failing, dismal guidelines and aren’t motivated to do any better…saying that your hands are tied is a shitty and poor excuse. Be the change.
Oncologists get paid anyway, it’s not like it’s a performance based salary, which is kind of how I think it should start to be. Maybe we’d actually see more people surviving this disease with this method. Maybe they should all have to live eating my mother’s Bad Boy Chili until they start to improve, that’d get them moving! If non-smokers can get lung cancer, prevention methods such as not smoking, aren’t going to stop lung cancer entirely…obviously.
We will still see people getting sick if we don’t say what’s actually causing it, and the preventative measures that they have right now, only makes this community wealthier because they are involved preventatively when they needn’t be. I think we should try the ‘don’t call us, we’ll call you’ when we need to. But first, we need to identify the trigger(s) of this disease.
Don’t quote me, but I’d read that there’s approximately 18 million people diagnosed with cancer and 10 million dying of it each year globally, with lung cancer being the most common (which has a dismal survival rate). Those are some shitty statistics. It’s time to start motivating the medical community and maybe hit them where it really hurts…the wallet. I can see no other method of motivation at this point, other than legal action.
Maybe I should make a commercial
Maybe I need to start putting commercials on TV for oncologists who specialize in lung cancer? Just like a drug commercial! It’d start with a defeated and beat up heavyweight boxer, then cut to a bloodied up and defeated MMA fighter, and then…cut to the hockey rink…
“Are you tired of getting your ass kicked?”
The visual: A beat up hockey player sitting in the bench at the rink with his head in his hands with a couple of missing teeth and a shiner, after an embarrassing loss with the scoreboard in the background showing a loss of 1 million to 1.
“Are you tired of knowing that most of the patients that walk through your door are going to die because you can’t or won’t do shit about it?”
The visual: An oncologist, who is really Uncle Death, putting on his white coat over his usual death outfit before going to work in the morning.
“Are you tired of lying to yourself and to them?”
The visual: The same oncologist getting stacks of cash handed to him under the table with pamphlets showing all of the golf courses the pharmaceutical company is going to send him to all over the world yet again, which is the same he’s frequented many times over the years and is getting fed up with the lie…yea right…I’d say the pamphlet showing the lap dances he’d receive after the one court case I’d heard about, but we gotta keep it PG folks!
“Well maybe it’s time to pull your thick skull out of your overpaid ass and actually do something about it!”
The visual: I don’t even know or care to even put anything here. Maybe we should just give them a kick in the bloody ass and start holding people accountable for once.
We all have feelings…use them
Ridiculous. At this point I think they’re all a bunch of automatons, incapable of feeling anything for anyone…well, maybe themselves. Lea’s oncologist certainly carried himself this way, and I hear the only other one she could’ve dealt with, was much worse.
I have read about them and the ‘sad lives’ they live. I don’t know if I feel sorry for many of them because of the way they treat people sometimes. How this one treated my sister when she was dying was disgusting. I try to be compassionate but they make it awfully difficult.
I don’t know if public embarrassment helps, and I hate to stoop to that level but desperate times call for desperate measures. If these oncologists lived and worked in the real world, they’d have been out on their asses long ago. Get with the program or get out.
Put your money where your mouth is
I’m sorry, we all have bills to pay and costs to incur, and they still make more cash than anyone. Doctors are supposedly in this to be compassionate and make a difference, and it was a choice they made to enter this field, so stop shaming the rest of us for your shortcomings and lies. Excessive amounts of cash being poured into their pockets, should be on the bargaining table because the performance reviews that I’m sure many of us would give, are pathetic. This is only the tip of the ice berg and needs to go beyond them and to those controlling the puppet strings.
Yes, my ugly is beginning to show and I don’t like to shit on people but I have been pushed to do just that. It bothers me every single day that someone out there is walking the exact same path, with more than likely the exact same result. I think of them and of their families, and I know and understand what they may and will eventually go through. Yes, death is a part of life, but I do not believe in suffering, especially at this stage of development within our civilization.
Bell ringing…it’s not what you think
Lea wasn’t quite finished all of her treatments when she came home one day with a story about another radiation patient that I can’t seem to get out of my head. An elderly lady had completed her treatments and they wanted her to ring the bell they have, that signifies the completion of treatment. Lea said that this lady sat there looking extremely angry and outright refused to ring it. Well isn’t that awkward and doesn’t that make a statement?
I still wonder about her. Was she forced into this treatment? Was her experience not what she thought it would be? Did she not get the intended benefit?
I remember Lea sadly saying that she’d never ring a bell of any kind and she never did ring that bell after completing her treatments either. This was just a layover in her journey. I wish people could’ve seen the actions of this lady so that they too could contemplate her emotions and her actions. It still gives me chills to think about it.
Why was she so angry? What was going on in her life I wonder? Is she still alive today?
Once Lea had completed treatment, she did experience many side effects. She had hoarseness, sore throat, fatigue, trouble swallowing a bit I think and some redness and tenderness. I can’t recall if she had a loss of appetite or cough, but she did say that the fatigue was a big one and it actually lasted quite a while if I remember correctly.
Storytelling is part of our survival
I don’t think that there are enough out there telling their true stories and shedding light into the realm of cancer treatment, especially the ones who didn’t have a smooth ride or a positive outcome. I often wonder how many are being censored because I already know that no one wants to hear the truths of the ugly stories. I’d like to see the actual patients write about their own experiences and not the family members around them who make it sound like everything is hunky dory and are probably missing the point. It’s hard to hear, but sometimes, our loved ones don’t tell us everything or feel like they just can’t because they don’t want to hurt us.
I know my sister wouldn’t sugar coat shit and I am trying to convey what she would have, if she’d had the chance. I wish she was still here to tell it herself and I feel very guilty for not helping her find a platform to do it. Many people on cancer forums online, don’t want to hear other’s harsh realities and often ridicule or chase those people away.
I witnessed a doctor who lost someone, courteously write about his experience in a lung cancer forum, to try to make others aware that many of the new lung cancer drugs aren’t well understood and to be careful. He explained that he wasn’t an oncologist but got jumped all over for scaring people, by the very same vocal posters who hadn’t hit a bump in the road yet, but seem to have all the answers. Lea was also chased away, when she needed help the most by these people. Some of these folks blatantly call others stupid for looking at alternative therapies and even experimental treatment options.
Not everyone enjoys good fortune
I guess what I’d like them to know is this, I’m happy that they have had good fortune during their treatment and I hope it continues, but realize that many others (in lung cancer, it’s most patients) are not so lucky. Others are reaching out because they may be dying and are fighting to survive with no other options which is why they often turn to these methods. I’m asking that you please have some empathy and compassion before calling them stupid.
They’re fighting for their lives. They’re not hurting anyone. I know this hurt Lea immensely and where she once found support and hope, she found ridicule and indoctrinated bias. We need to support one another if we are to get ahead.
We wasted precious time doing what should be expected of health professionals. When we should’ve been enjoying what life Lea had left, we were frantically attempting to discover ways to extend her time on this planet. Not that it would’ve changed things, but maybe they should’ve given us a heads up that they were already running out of options.
They see this disease every single day, we don’t. Communication is important. The next thing we knew, we were sliding down from the very peak of the mountain we felt we’d barely begun to climb.