Lea was admitted in June some time, maybe a month or so after the PleurX catheter had been placed. She had been having issues with pain and asked to be prescribed medical marijuana because she didn’t want to take or rely solely on opioids. Her oncologist had her on Morphine but Lea didn’t like how it messed with her head and was terrified to venture down the path that included Fentanyl or Oxycodone.
The fear of becoming addicted and not wanting to be out of touch with reality, cost her time with her two sons and affected her quality of life greatly, in that she was in constant and agonizing pain. She was a firm believer that marijuana would not only help in easing her pain and improve her appetite, but thought it could possibly fight her cancer as well. When the pain became unbearable and completely out of control, we had no choice but to have her admitted (despite her wishes) because what we were witnessing was cruel and inhumane. Her young kids had had a front row view of her rapid and downward spiral to death at home and we needed to intervene.
Try as Clem and I might, we attempted to shield her boys whenever we could. When Clem would drain Lea’s pleural effusion each day, my girls and I would try to distract them by getting them outside to play so they wouldn’t have to witness the procedure. As I will write later on, the things that not only my children went through when my youngest was treated for cancer, and what they and my nephews witnessed with Lea, has and will always have a profound effect psychologically. Lea saw nothing wrong with the boys seeing all of this, but we knew of the negative consequences and attempted to spare them when we could.
Clem and I think that Lea had all but given up trying to hide her state from her kids by then. Her fight was waning and she knew the unthinkable was on the horizon. She knew she wouldn’t have to deal with the fallout afterward and didn’t have the energy to try and conceal it any more. If you knew Lea, this didn’t come from being selfish, she no longer had the fight to keep up all the fronts any more.
Constipation was apparently killing my sister
Her room was kept dark and quiet. Lea would basically have a few minutes of relief here and there and she’d try to sleep and rest during those moments when she could. She was very uncomfortable and could only lie a certain way. If she wasn’t using the bathroom, she was only up to stand in place while rocking back and forth to try and quell her pain.
All I remember the doctor basically saying was this…wait for it…she was constipated. Yeah, I’ve spoken to a few people since my sister’s death, and I hear the same thing being regurgitated by those who’ve lost loved ones as well. It’s all about the shit.
After going through all of this, I liken medicine to the sinking of the Titanic. The Titanic strikes an iceberg and there’s a huge bloody hole in the boat taking on water which will cause it to sink, but no worries! Help is here!
The ship’s sinking, let’s go have a sammich
We can’t fix the hole that’s letting all of the water pour into the boat but we can surely help drain the shitter tank. They reckon that once all of the shit is out of the boat’s holding tanks (because they say they’re full) the boat surely won’t sink out of sight. It just has to work…and it has to work because that’s all they’re capable of.
Yes indeed, having a full shitter may not be the best thing, but picking something else up and focusing solely on that instead of the real issue seems a bit stupid, doesn’t it? Yes, it’s a symptom, it’s not the root cause of the problem however. No matter, that’s one thing they can fix, so they work on that as hard as they can. At least the dying won’t have a full colon upon their departure from this planet.
All I can say is this…what the ever loving fuck is this bullshit? You’re labelled highly intelligent and demand to get paid the big bucks and that’s the best you can do? Come on!
She’s not dying, she’s just full of shit
What’s even more mind-boggling, is that we knew she was dying but doctors never said a single thing about it. Nothing! There was no warning that they had run out of options and that this was it. As a matter of fact, I don’t even know if they’d even mentioned trying salvation chemotherapy at that point, and really, I don’t think she would’ve survived it.
Lea had ascites accumulating in her abdomen and her pleural space continued to fill with a vengeance. Obviously, the shit had hit the fan and we were dealing with a bunch of ass scratching idiots who felt like they were playing a game of Spy Vs Spy. All hush hush and yet, we knew things weren’t good. It didn’t take a genius to figure that one out.
They wouldn’t say anything except that they were on a mission and determined to unplug my sister like a gas station shitter after a long haul trucker demolished it. My apologies if that’s too graphic. I’ve had to rely on my father’s plumbing stories and that’s the only way to describe how these people saw my sister’s condition.
You don’t feel embarrassed and yet, maybe you ought to
You know, I wouldn’t be able to live with myself if I were one of the people who were involved in my sister’s care at that time. Embarrassing. Have they any shame? PEG and bedside enemas…boy are you guys ever saving the world, one shit at a time.
Lea hadn’t drained her own PleurX catheter yet, due in part to the rigorous steps involved in prepping and actually draining herself and because she wasn’t comfortable with it either. When she was hospitalized, she basically had to do it herself and supply the drainage bottles because the hospital didn’t carry that kind. Clem was there for the first couple of days to drain her, but you’d think someone would’ve helped?
Here’s the thing, you ain’t going to shit if your organs are all compressed because of the fluid built up within the abdominal cavity. Second, the amount of pain meds that she needed, wasn’t helping either. And, when you’re not wanting to eat or drink anything, and all of the fluid that you take in or that your body produces, basically gets diverted into the spillage that be ascites, why do you think no one would be able to defecate? You actually have to treat the PROBLEM and that was CANCER.
Somewhere down the line, I figure Lea’s body decided it didn’t like what occurred when the radiation bombarded it, and the cancer was rearing its ugly head and decided it was show time. I haven’t a lab, nor did I have any access to her medical file, so I am left to assume. I really don’t like to assume because that can often lead to making one look stupid. Am I mad?
You mad brah?
I think I’m beyond mad. I’m disgusted. For all the dictating that this faction does and all of the flaunting about how great they are, they don’t have much to show for it. You’d think we’d have accumulated vast amounts of knowledge and know how, and yet here we are. We’re all simply full of shit…fucking genius.
One of the doctors who ran the show in that ward, was trying to dial in on how much and what kinds of pain medication Lea needed. Their help in this area, was needed long ago, but at this time it had become a freefalling spiral that no one seemed to be able to get a handle on. Yes, Lea had a hand in that and I am not excusing her solely either, but even if she was following along on pain medication protocols fully, she would’ve eventually arrived at the same destination.
Lea was trying to take care of her kids by herself because Wade had to work. She hated asking for help and decided that she had to be cognizant and forced herself to function to look after her kids. Try as we might, she’d promptly push us away and deny that she was incapacitated by pain.
The dilemmas young, dying mothers face
I can completely see her point of view as well. She was attempting to live every single possible second with her kids as normally as possible, and these drugs were interfering with that. Her life was focused on her kids and being stoned out of her ever loving mind, all day, day after day, wasn’t a part of her agenda.
Blaming and shaming patients into treatments and protocols, doesn’t always alter their outcome. It may delay the inevitable, but I don’t think that it will always be better if things had been implemented earlier. I agree that they may have been able to better control her pain instead of wasting precious time trying to dial it in, but the speed in which this happened, makes me think (in hindsight since her passing) there wouldn’t have been much of a difference.
It’s at the point where maybe modern medicine should just focus on quality of life and comfortable dying because they’re getting their asses handed to them by trying to ‘cure’ or manage these diseases.
Once they get a handle on that, maybe then they’ll be inspired or have the insight required to solve the issue but right now, admit defeat and accept something potentially easier because you’re in over your heads. My sister was more concerned about being drugged out of her mind, becoming a bloody addict and the stigma surrounding that, than actually trying to live pain free. It’s cruel that someone suffering, worries about these things instead of focusing on what’s truly important, living what life they have left.
We’re all responsible
I’m not even going to weigh in on society’s judgement or on opioids because I could probably write a huge long ass novel, just trying to explain the never-ending connections I see. All I’m going to say is that this opioid crisis, I believe, has been created by not only the pharmaceutical companies, but government and doctors themselves, which has evolved into a huge societal issue that concerns every single one of us. It’s so bloody complex and intertwined and it not only hurts the people who derive justified benefit from these drugs, but the people who’ve lost loved ones to addiction, the addicted and the bystanders who have to witness it all.
It’s a painful, ugly mess. I know, I include all of us in solving all of these issues because I believe we’re all involved. It takes a village, and this planet is the village in my mind.
My sister’s frail body was filled with malignant fluid, causing her legs and abdomen to swell so enormously, that she looked to be 6 or 7 months pregnant with tree trunk like legs. Her arms were like 2 sticks and the hollowing of her armpits and her gaunt cheeks made it clear that she was wasting away. Nothing about her appearance was normal by any means, and we all knew what we saw.
Deny and deny, are you sure you’re a doctor and not a politician?
We’d ask, and they’d skirt the issue. I swear, if we’d asked if she was dying, I bet they would’ve said,
“Naw, she’s just constipated.”
The damage alone from that kind of deception, no one comes back from.
If you want people to trust you, you must be honest, even when the truth and reality are beyond painful. You cannot demand trust or obedience after someone has experienced the lies and the ensuing reality. We human beings adapt and change for survival reasons and these betrayals are cast in stone and remembered for future reference in regards to living to fight another day. It’s not rocket science, it’s human nature.
Isn’t this insane? Hoping it’s transformed to another disease?
We hung on a single thread of hope. Hope that the biopsy that was taken just a few short weeks ago, would yield some result that the cancer had mutated to the next most likely lethal letter and number combination. We could only hope that she could be treated and keep moving forward in her journey. We were rolling the dice on the T-790M mutation.
We rotated in to spend time with her, but she was so engrossed in trying to go to the bathroom and attempting to keep focus to keep her pain in check, that we merely seemed to be in the way. I tried to rub her back and help make her comfortable but everything seemed futile at best. I’d never felt so damn hopeless in my entire life. Going back and forth was all a blur, and trying to keep up the life Clem and I had at home with our kids was nearly impossible.
It was field trip season and both girls were going full bore and as per my usual, so was I, in volunteer mode. Wade was working only a few blocks away, but only went maybe once to see Lea after work. He never stayed a single night with her, which was available to us all, but it posed an awkward situation because we felt that he should’ve been there at the very least. We were taking care of the boys and his boss understood and was sympathetic, he had no reason not to be there.
Just like the instructions on a shampoo bottle
It ate at my gut that he wasn’t there for her. She gave everything so selflessly and he just didn’t seem to be the least bit inclined to want to give love back. I really questioned the relationship after witnessing them together when their kids were born and didn’t want to cast judgement, but this was truly heartbreaking.
Days, nights, daily events and whatever else was going on, didn’t faze any of us. It was basically wash, rinse, dry and repeat each day. The days went as follows:
- Step 1: Go to that dark, dreary room,
- Step 2: Say hello, try and be as comforting as you can while watching her struggle to survive,
- Step 3. Witness her fall into a momentary drug induced sleep after pain medications administered,
- Step 4: Witness the insanity of trying to force herself to consume disgusting amounts of PEG and,
- Step 4: Watch her force herself to use the bathroom to no avail.
- Step 5: Repeat
The insane balance of 2 lives
My parents were attempting to keep some balance at home for the boys while we tried to do the same with our girls. It was like we were double agents of some kind because we were living 2 very separate lives. Being with Lea and trying to wrap our heads around what was going on in order to accept that she was possibly going to die, while trying to live a somewhat normal life at home for our kids, felt insane. I had to put on my normal face while being out in public while dealing with witnessing my sister’s suffering and all it affected.
I remember when the realization finally hit me that I was billions of miles from a normal reality (I experienced this when Caelan was diagnosed and treated for cancer, but this was different). I was on a field trip when a wave of envy overwhelmed me to the point of anger after just being around normal human beings with normal, everyday lives. It sounds ridiculous and selfish now, but I was just so fucking mad that this was happening to us. I still kind of feel that way and now it’s just rolled into feeling pain and anger for others who have to suffer the same fate.
I recall the day Lea had to have a CT scan during one of my visits and was disgusted at the lack of compassion that my sister was extended. She could hardly eat or drink anything because the nausea was so overwhelming, even though drugs were being administered constantly and as needed. They kept pushing her to drink that nasty shit they call PEG and when the time came for the CT scan, they were forcing her to drink an unfathomable amount of contrast.
I can’t say it enough…compassion, compassion, compassion
It’d been months since she’d been able to even handle anything remotely close to the amount they were asking her to drink and were a bit nasty when she said she’d drink what she could. After trying to pound that shit back, they made her walk down to her scan despite the fact that she was pretty much bedridden and could only get to the bathroom and back or stand in place when the pain was too much when lying down.
As Lea went to get into the elevator, she suddenly doubled over in pain and cried out that she was about to vomit. Did any of the hospital staff react? Nope.
The lady who came to collect her, just stood there waiting impatiently and no one came to see if we needed any help. I ran to the nurse’s station and asked if there was anything we could use for Lea to throw up in because there wasn’t a single garbage can or anything within the vicinity. The nurse that finally stood up to do something, just casually strolled around, wondering aloud what she could give me…apparently they don’t give a shit if you barf all over the floor nor do they care if you’re able to walk to your tests if you’re bedridden.
I get it, you see it every single day of your lives…we don’t. I couldn’t believe how nonchalant and uncaring they were. Lea always defended them and said that everything was fine, but I certainly don’t feel that it was. Stockholm Syndrome anyone? Yup…I’m bloody well going there.
We’re there to help…but where the hell are you?
The other thing that really got me, was that they have some kind of team to help families cope with the many issues that arise when your loved one is ill, like financial aid or psychological services. I found that they were rarely there and if you needed to talk to them, you had to track them down. If you missed them, yet another business card was tossed into your face.
Once my sister was in the elevator, I spotted the lady and ran over to see who we could contact, in terms of preparing 2 young boys with the possibility of their mother’s death. As she wasn’t the psychology person, she couldn’t help me. I was handed yet, another card.
My sister couldn’t engage any of them when they dropped in to see her anyway, and honestly, she was in so much pain that she was hardly able to speak, if and when they’d appear. Talk about difficulty bridging the gap. Not only that, trying to talk to anyone on behalf of her was fucking a nightmare.
Thank our lucky stars, she mutated…wtf?
The day the pharmacist came to talk to Lea about her prescribed marijuana was beyond laughable. Despite the fact that we all knew she was using it, the pharmacist wouldn’t engage, even though Lea told her she could talk about it in front of me while I was there helping care for her. Talk about stupid.
None of us had come up for air during that time, but I believe Lea was in the hospital for a little over a week before the biopsy results finally surfaced. I remember Clem calling me from the hospital one morning, saying that the oncologist had stopped in and said he had some promising news. The biopsy came back showing the T-790M mutation. He had a stack of paperwork and basically said that Lea could treat it with another recently approved TKI.
It was called Tagrisso or osimertinib.
They’re not in for the money! No way!
As Lea was still plummeting toward the ground in a free fall, Clem stepped in and started to fill in the paperwork immediately. Yes, Clem was our paper pusher for absolutely everything because he has a superpower…extreme organization and promptness, otherwise known as OCD. If I remember correctly, it was a Thursday when we received this news.
After riding in this rodeo, I hope that others may see why I think pharmaceutical companies and modern medicine are a bunch of heartless, profit driven charlatans. If you have something that might save a life, wouldn’t you immediately administer it to them? I know that I certainly would, especially if I am compassionate, empathetic and committed to saving lives, wouldn’t you? I’m no psychopathic narcissist, and here’s why I call bullshit on these companies when they say they aren’t money hungry pieces of shit.
In order for Lea to get this life saving medication, a bunch of forms had to be filled out. Fine and dandy, but here’s the kicker, and another friendly reminder, this happened in Canada. A T4 slip had to be provided. For those who don’t know what a T4 slip is, it’s basically a summary of your employment earnings and deductions for the year.
Still don’t believe me? Keep reading!
So, in order for Lea to get the magic pill, she had to prove that she couldn’t afford the $12,000/month that they wanted to charge people to take this drug. Now, I didn’t know that this kind of thing happened in Canada, and I’d also already read somewhere that this new drug had already been approved in Canada for this mutation. Apparently, the government hadn’t yet worked out a payment plan with the pharmaceutical company and they had to be certain that Lea couldn’t afford it and that someone had to pick up the tab.
I understand that these things may occur in other places, but I had never heard of it happening here. I don’t want to get political, but it pisses me off that insurance companies are already heavily involved in supplementing care in Canada, and now there’s talks about some form of pharma care coverage coming? What was that about money not being the focus? I’m sorry I can’t hear you over the money raining down all over you shitty assholes.
I don’t think pharmaceutical companies, government and doctors should be mixing their business and pleasure all together as one big convoluted orgy that strives for nothing more than maximum profit and future guaranteed investments. It’s already been shown that it’s detrimental to the health and wellness of human beings and yet here we are, one big ol’ circle jerk. Ethics? What are those?
The rush of paperwork
I’m sorry to say, we’re not helping the situation either. We need to own up to a lot of shit too and take responsibility as well. I know no one wants to hear that, but relying on a single magic pill and not using our own brains is costing us dearly. I don’t even know if we can turn it around at this point, but I remain hopeful, pessimistically so.
Anyway, Lea was tanking fast, and we were racing the clock to get this new drug into her dying body, in the hopes that she would live to fight another day. I hate to say it, but I’d also had the thought that maybe we should let her go so she wouldn’t ever have to suffer like this again. Horrible I know, but what she went through was agonizingly inhumane and cruel and if this drug ran out with no treatment available, we’d see the same helpless and painful descent to death.
We were desperately trying to get the paperwork back to the community liaison/nurse that was trying to help arrange for Lea to have access to this drug as quickly as possible, but their system ended up glitching. If we didn’t get the T4 to them before days end, she’d have to wait until the following week to receive the Tagrisso. I’m going to be very honest and say, my sister wasn’t going to survive the weekend, that’s one bet I think I would’ve won.
Moved mountains and freshly squeezed vodka
I don’t know how Clem managed to move the mountains and turn the rocks into vodka, but he bloody well did it. He got those sonsabitches their stupid fucking T4 before days end, but it wasn’t confirmed that they’d received it. Talk about a shit show! Everything was riding on a piece of bloody paper making it to some unknown human being who controlled all the puppet strings.
We went to bed that night not knowing if Lea would get the meds the next day. After all of these centuries in human history, message delivery has never been 100% assured. Even after late or never delivered messages have altered the courses of nations in our history, we’ve not been able to accomplish perfection in the art of message delivery. Astounding.
What burns my ass is that they had to send the hospital the drugs via courier service, and every fucking second counted for Lea, but they were in no hurry. You’d think that they might actually have some of that shit kicking around the CANCER CENTER PHARMACY, waiting in the wings to possibly save someone, but no. Where the hell else would you be using these drugs? The flower shop perhaps…ridiculous.
Some of the best damn bean counters this civilization has ever seen
Apparently, they wanna bean count every goddamn pill and cent and don’t give a rat’s ass if it’s actually available to someone in need. Does that sound like someone who’s completely focused on saving lives, or is that someone who obviously values money and profits? How about striving to do better…haven’t seen that yet either. I’m still on the fence on that one, I’m not certain they’re smart enough to actually have a cure and I also think they never will, just to keep El Casho Flowo flowing.
Look no further than Martin Shkreli or the most recent pharmaceutical industry price increases just over these past few months with an illness suddenly being at the center of attention. They’re not fooling everyone. I see you. You have a place within our society, but it shouldn’t be the majority.
The Tagrisso arrived in the afternoon (or so the hospital staff said) and Lea took her first dose. Of course we knew we weren’t going to see immediate and drastic improvement overnight and just hoped that Lea would survive long enough to hopefully have some positive result of this drug. We had everything riding on that magic little pill because it was Lea’s only hope.
This ain’t the movies folks
This isn’t like the movies or the storyline in a book where a hero usually steps in to save the day. This is real life. It doesn’t matter how much hope you throw out into the universe, or how many things you offer to give up for whatever outcome to whichever deity one worships, everything is completely out of our hands.
As I’ve said before, I’m a non-believer or atheist, whichever you’re comfortable with, and I’ve never put my time and energy out into the world, expecting anything back. I’ve always been a no strings attached to anything kind of person but I’d like to think that putting out positive things will make the world a better place. Unfortunately, I still have my doubts. No matter, I’m still going to give freely, and not expect anything for that.
With that said, I had no one to bargain with. I had no reason to think that I did something wrong and was being punished and yet, I was still bargaining with the universe or whatever, to see my sister survive, that’s desperation. There’s one thing that I did promise myself though, and it was to one day try to do or say something to help affect some kind of positive change in the world, so that others wouldn’t have to suffer this same fate.
Little did I know then, that I’d eventually find myself here, writing about my sister’s story. Little did I know then, that pain and grief would eventually motivate me to be brave enough to find my voice. Little did I know then, that my sister wasn’t going to be that one in a million.