As promised, a continuation of Lea’s story.
The new medication (Tagrisso – 80mg) that Lea had been taking since finding out that she had the T790M mutation after her rapid decline, showed extremely promising results. The first scan at the end of July (after starting it in mid-June) showed a major improvement throughout, and the second one in October was just as impressive. The tumors within her liver had decreased substantially and her body appeared to be rapidly on the mend. For the time being, everything seemed to be under control and improving.
We were all very surprised and happy about how things were shaping up and had hope going forward. Lea was gung ho on getting to NED (No Evidence of Disease) status and her positive attitude was infectious. She was full steam ahead on getting herself healthy once again and to watch her gain strength with each passing day, made me shake my head in disbelief that this was the same human I’d witnessed who was dying just a short time ago.
I remember Lea calling me one day, only a few short weeks after getting out of the hospital. She’d called to share her plans on how to get back on track and get her body healing and build strength. She wanted off of the pain medications and had eliminated medical marijuana completely.
Priority #1: Enjoy life
She wanted to go back to the keto way of eating, but she also wanted to live her life, therefore, she wanted to have her cake and eat it too. I fully agreed with her and said that she did need to live and enjoy wherever she could but yes, nourish well and nourish often. Weighing, measuring, and calculating the nutritional information of all of her food at this point, was a waste of precious time.
She discussed returning to some intermittent fasting later on but that was off the table for the time being because she had nothing for her body to run on as it was. She had done some 3-day fasts or longer previously and I don’t know how she did it but she said she was completely useless and didn’t want to waste what time she had left being exhausted, weak, and hungry. Clem had arranged for childcare for Lea and Wade and they were utilizing it until Lea got back on her feet which meant, Lea had more time to devote to her healing. That took a lot of the stress off and allowed her to focus on herself.
I think one of my fondest memories of that phone call, was when she was talking about trying to get back the significant amount of muscle that she’d lost. Her arms and thighs had seriously been eaten to twigs by her cancer and she felt weaker than weak, but her massively muscular calves (from the skating days of her youth) seemed to have weathered the storm somewhat. So, as the amazing big sister that I am, who had just fallen in love with weight training told her, it was time to pick up some heavy shit.
Lifting weights is excellent therapy
She had some of those Barbie (light) hand weights, so she started with that and I warned her that possibly, dependent upon her dedication, nourishment, and healing, she’d be trading those in within a short time frame for some heavier ones. She laughed and told me to blow it out my ass, but sure as shit, not even 4 weeks later, I was the one laughing at her and telling her to go blow it out of her ass! I loved how excited she was when she called me to gloat about how strong she was becoming and how excited she was with her progress.
She was still really scrawny, but she was starting to fill out a little in places (upper arms, face, and thighs), which was a great sign. She spoke briefly about how horrible it was to go through everything she had, nearly die, and then bounce back, all while knowing she was probably headed down that path again at some point in the future. The array of emotions she shared with me about that was difficult to hear. The fear of her dying a horrible and painful death was one thing, but the thought of her having to go through that again and then possibly be saved at the last possible moment on the very brink of death and reliving it over and over was a horrifying concept to wrap my thoughts and emotions around.
It made me consider things I’d attempted to contemplate before. I understood why people eventually let go instead of continuing the fight. There are times where it’s just blatantly cruel and painful and if I must say again about certain things in medicine, barbaric. We all have different thresholds and each of us can endure only so much.
Some aspects of modern medicine is a crapshoot
I understand now. It’s not the same giving up as giving up and we should be able to decide for ourselves when enough is enough, or if these paths laid before us are indeed the paths we wish to seek or, if they suit our individual needs. No one truly knows what the future holds and medicine is sometimes a crapshoot. Period.
Yes, a crapshoot (I merely had to read about pediatric cancer treatments to see this). We still don’t understand who responds to what or why and we still don’t even understand if every tumor found in each of our bodies is definitely going to kill us. I will keep saying, no 2 humans are exactly alike. I feel that sticking the same reasoning to everyone even though we know this, feels like insanity.
Look no further than reading about over diagnosis, overtreatment, people who beat astronomical odds, and even as far as how many people die with cancerous tumors that hadn’t played a role in their death to consider some of the many possibilities involved in cancer (and those ideas are just a few of the interesting things I’ve read about). As I will continue to say, each of us is different, medicine isn’t perfect nor absolute, and we have a very long way to go in understanding it all. That shouldn’t be considered a far out-there concept and yet many think it is.
I feel like that is a sane and scientific thing to consider and not the insanity that proponents backing these techniques for cookie-cutter diagnosis and treatment want everyone to believe. Constantly questioning and challenging theories is a huge part of science and yet this area of discipline seems averse. This happens in other scientific communities, so why is it so frowned upon in medicine?
Lung cancer is deadly for the majority, in fact, the type of cancer that takes the most lives in the world, is lung cancer. Some of the treatments that have been recently developed work very well for some and not so well for others. Until we have an understanding of why that is, things won’t change much. Until then, we need to keep questioning and challenging.
This is the point in my sister’s story that makes us all wonder if she had chosen differently, would she have gone through what she had gone through and died or would she have lived a little longer or perhaps still be here with us today? I understand that lung cancer was eventually going to end her life, but would it have happened this soon? So many questions and absolutely no answers with scattered tidbits of relevance strewn all about and in between but nothing to confirm any of it. I live this every single day in regards to my young daughter’s life and the same since my sister’s death.
Lea was almost back to her normal (as in doing well while living with cancer) capacity by the time her scan in October rolled around. She had gained a little weight because she could eat once again without pain and nausea, her digestive system was working at normal capacity and she was draining less fluid from the PleurX catheter in her right pleural space. She had energy again (many days more than me), and was the complete and total opposite of what she had been in June.
I think she had weaned herself from much of the pain medications she’d been prescribed (her doctors didn’t like that…I wonder why) or was nearly off of them at that point as well. She was determined and had been focusing on living the best life she could and it definitely showed. She was strong.
The human body is wow
In Lea’s scan results from July, it showed that there was a moderate amount of pleural effusion in her left pleural space. The PleurX catheter had been placed in her right side, so the left had never been drained. In October, the results of her scan showed that the moderate level of pleural effusion had increased mildly, but wasn’t flagged as anything concerning. Things looked encouraging.
On the morning of Lea’s appointment with her oncologist to go over her October scan results, her body did a very entertaining and amusing thing. Much like the facial piercings she’d had in her early 20’s, her body appeared to be rejecting the plastic medical equipment installed within her pleural space if you will. The body is an amazing thing I tell you, amazing.
Imagine Lea’s surprise when she noticed that the tube going into her body was beginning to be pushed out. How would that make you feel, a little panicked perhaps? Especially since they read you the riot act about taking care of your new bodily hardware and all of the terrifying things that could happen if you don’t. When things start to happen all on their own, you might freak out a little.
I’m not sure if this was simply a case of her body healing itself and finally acknowledging that this wasn’t supposed to be there kind of thing or if perhaps some damage occurred while she was sleeping. I don’t know if she had the Tegaderm covering over it (I doubt it), but there’s a very good reason for why it wasn’t if it wasn’t. Perhaps airing shit out is more powerful than we think.
Allow me to explain the lack of Tegaderm. We have this bullshit thing here that they call home care, but as you’ll read soon in Caelan’s journey, it was more of a leave your home and come to us to fuck you up because the hospital won’t deal with you kind of home care. Unfortunately, Lea also had to deal with the ineptitude of this garbage we call home care too, and let’s just say that after these dealings, she was better off without them.
Lea had a prescription (man do doctor’s love that power of prescription bullshit) for home care after she’d had the PleurX catheter placed, and I can tell you that after dealing with them a handful of times, she swore off of them. This is partly why healthcare is a shitty thing to navigate if you’re sick and dying. If you’re not deathly ill or injured, our care seems pretty good, but it couldn’t be further from the truth if you’re terminally or chronically ill.
Do it right or not at all
Anyway, one of the things that made Lea swear off of home care was the simple fact that she and Clem were taught that to avoid any rashing and discomfort when changing the Tegaderm (if you’ve read in Caelan’s journey, you’ll see my love of this stuff), once you’ve cleaned the site with antiseptic wipes, you have to let the area fully dry before sealing it back up. You know what that takes? Time and patience, none of which these people have nor care to give apparently.
So, Lea ended up with someone who decided to thoroughly scrub the ever-loving shit out of the site (bad idea) with antiseptic and then place the Tegaderm back over it without allowing it to fully dry (despite Lea’s insistence to wait but this nurse insisted it was fine). I bet you can guess what happened. Lea wasn’t thrilled when the huge rash appeared and caused an insane itch that she was attempting not to scratch because it was a very sensitive area that could become easily infected around the open site.
Dangerous for the possibly immunocompromised cancer patient (Tagrisso does warn about making you more likely to get infections)? Naw, they didn’t seem to care about shit like that. No, they didn’t. I wonder when all of these folks who work in healthcare are going to get on the same page in regards to policies and procedures…
Medical equipment rejection, who ya gonna call?
Anyway, in order to heal herself, Lea had to remove the Tegaderm and allow the air to heal the rash. It took a while, but it finally healed. I suppose you could call it heal thyself and fly by the seat of your pants because really, no one was of any bloody help after that and she was pretty much on her own. I believe she and Clem did a few dressing changes themselves after the incident (without any issue), but if Lea had to submit to home care doing it, she ensured they never did that to her again.
The day she noticed that the PleurX catheter was sticking out a bit more than usual (she did have a dressing covering it), she became a little alarmed and knew that she needed to mention this to someone. Conveniently, the appointment with her oncologist was that afternoon, so she thought she’d just stick with that. I think she’d considered going to the closest emergency department, but a recent trip there had made her swear off of them too.
Due to the presence of an air bubble in the catheter line one night, Lea felt like she needed to go to the E.R because she wasn’t comfortable with it (we were out camping with our girls and my folks were in town just in case something like this happened). Long story short, Wade ended up having to make a trip back home to get a drainage bottle because the hospital didn’t carry the same brand that Lea’s catheter used. Kind of ridiculous if you ask me. The visit ended up being for nothing and way longer than necessary, prompting an avoidance of the emergency department at all cost.
Protruding catheters and timelines
So, she went to her appointment that afternoon with Clem and met with the oncologist, who gave them the results of her scan and then told them that the PleurX catheter wasn’t his specialty but he would make a call to the thoracic surgeon who installed it in the first place. In the meantime, she just had to wait for him to call and let her know what they were going to do. Please forgive me as I don’t remember nor have an exact timeline as to how everything played out from here.
I do have some of Lea’s paperwork and past text messages to help guide me along but she’s not here to give me exact details and confirm exact dates. I have a piece of paper confirming an appointment for November 1st to the chest clinic where her surgeon worked and I do recall she was playing a lot of phone tag with them for a while (4 or 5 days I think). Not certain how long, but this could be the timeline, October 17th, the catheter was beginning to protrude and November the 1st was the appointment to figure out if she needed another placed.
I remember that she and Clem went to the appointment on November 1st and it was definitely decided that the catheter was no longer of any use and because Lea wasn’t draining much fluid, they removed it entirely. It had come out a couple of inches by the time they actually addressed the issue. If she needed anything drained, she could come in and they’d do it for her. So, they pulled it out…like a pull starter. Ick.
The ball began to roll here
While there, they decided to drain the same lung and do the left one as well. I’d like to say, that up until this point, they didn’t take any samples nor test what she had been draining over the how many months she was dying, because it was just waste and was merely dumped into the toilet and flushed. They hadn’t made any stink at all about her left side, so we assumed that under the circumstances, this was normal for someone who’d been accumulating as much pleural effusion and ascites while dying of cancer.
So, the left lung was never a concern and the pleural space had never been drained at all throughout this whole time. Whatever was drained from the right pleural space, was human waste and apparently of no interest, right? So, any sort of interest in this fluid on the left was a moot point in my opinion at this stage of the game, but maybe not so for someone who is apparently enticed by the allure of ‘rare’.
I’m not going to go into specifics because what’s done is done, my sister is dead and long gone and nothing will ever change that, period. What I will say is, this nitwit thoracic surgeon felt that Lea may have had this threatening and ‘rare’ (yup, you know how I love this term) condition called a chylothorax because when they sampled the fluid upon draining her left pleural space, they found a large amount of cholesterol in it. All I’m going to say is that if you’ve been reading, Lea was basically one eyelash away from being fully through death’s door only a few months earlier and this lung had NEVER been drained of any pleural effusion whatsoever, so technically, this sample was old news.
May I present, Exhibit A
I wasn’t surprised at what they’d found because everything had gone to proverbial shit only a few months prior and she was still healing up from that last bout of shall we say death. During that time, who knew if she’d developed a chylothorax. No one was even remotely interested in looking for it then.
As of the time of the first sampling in November, she didn’t fit the picture, and unfortunately being someone who needs solid evidence, this sample wasn’t solid evidence. A new and current sample yes, but this one in my opinion, no. Again, I’m no doctor, but I do have a background in investigation.
Am I out to lunch? As far as I was concerned, we were beating a dead horse and confirming so. This was potentially residual cholesterol (indicating a pseudochylothorax) and not reflective of her current state.
If the pleural effusion hadn’t increased substantially, it didn’t fit the scenario. Any testing beyond a current sampling, in my opinion, was useless. In addition to that, most chylothorax is located on the right side (2/3) most of the time and this was her left. How much more rare could this possibly get?
Anyway, after sampling it, he basically decided to do a fancy test (I say procedure) called a lymphangiogram. This technique is apparently not often done (here anyway), but is sometimes performed to diagnose and possibly correct this rare and lethal affliction. The dye used, infiltrates the lymphatic system and can remain within the body for up to 2 years (detectable on future scans), and after reading about this test now and the ‘dye’/contrast agents they use, I see that there is a contraindication in regards to its use in lung cancer patients.
Questions, questions, and no answers
I’ve also discovered some other fascinating things about this contrast medium and my inquiring mind wonders (what you don’t learn after the fact) about its effects within the human body that hasn’t been determined or perhaps disclosed. Anyway, at the time, I did my homework and presented my case to Lea about leaving well enough alone because she was doing quite well up until this point and I felt that this test was just going to add insult to injury, or not do a bloody thing for her unless a current sample supported going through with it. Yes, I am investigative and need to see evidence before proceeding with things and in this case, I felt it was warranted. These tests/procedures can cause harm to some and for someone who was just climbing out of the hole, who knew what could happen.
I don’t feel that this was outrageous, cautious yes, but crazy, no. Why run out and do something without valid evidence? She wasn’t on death’s door anymore and I felt that jumping in like that was foolish. I’ve considered that he didn’t read what had happened from the time he last saw her in May to that point in November, which was all laid out for him on the network all health care people have access to and that he didn’t know that she had tanked severely only a short time ago.
Have you ever done something you regret? I think we can all answer that with a yes. I can confirm that Lea regretted her decision up until the day she died and now, I wonder if it had any part in kicking off the downward spiral that led to her death.
An unquestioning believer no more
‘Healthcare’ is very good at convincing people that they need them and their products to live a long and healthy life. I’m sorry, but I don’t buy it. They should be there when we need them and as far as I’m concerned, no more than that.
I’ve done a lot of reading and have merely witnessed and experienced firsthand their wares and actions far too many times to count that either a.) don’t add up or are justified, b.) don’t meet the expectation/s they sell/provide with no measurable or considerable improvement whatsoever, or c.) cause life-altering damage. I haven’t seen as many good outcomes compared to the bad, and their refusal to listen or consider anything other than their opinion, sets off the alarm bells. As life goes on, it seems to be getting worse.
I’m wary and have been for a while (I took unnecessary medications for years before realizing I didn’t need them and now I am left to wonder what that may have done). I’m sorely disappointed when I hear that doctors are unable to even figure out some of the most common and mundane afflictions while offering no compassion or empathy, only insults, and ridicule to patients when they can’t figure shit out. I worry that if my loved ones or myself end up in an emergency department and released on their word that all is fine, are we truly fine? Oh, and I’ve learned that no matter the symptom/s, we’re all just full of shit according to them…here’s a laxative.
Admitting mistakes and being willing to learn makes for better. That isn’t a bad thing. Continuing to disregard and not learn from these lessons, only confirms what I and many others think of modern medicine.
Question, question, and question some more
If you’ve read before, I firmly believe we need to be aware and advocate for ourselves and that should include having access to full, correct, unbiased, and truthful (real scientific data) medical information with the ability to question and challenge it without fear of threat or retaliation, and witness its evolution as new information presents itself. We all need to work together for this to happen. For right now, we need to protect ourselves and our loved ones because many medical practitioners won’t and don’t. They don’t end up paying the price when the shit hits the fan, we do, and I’ve experienced this firsthand and can say that the mess left behind is life altering.
Anyway, the thoracic surgeon didn’t show for the procedure that day and instead, sent his lackey (no insult intended but I’m not certain what this guy’s title truly was) to do this lymphangiogram. Clem told me about the excitement in the comments coming from the staff because of this test occurring, and that definitely sealed the deal for me in not trusting these idiots. Lea spoke to the ‘lackey’ (if you will) about the validity of this test regarding the sample taken a week earlier, and even he admitted that he wouldn’t do it and even attempted to talk her out of it. He said she could come back if the latest sample indicated that there was more evidence pointing to a chylothorax.
What does that have to tell you about this schmozzle?
I wish I could go back
I admit that my insistence on her walking away from this, probably didn’t make things easier for her, but my gut instinct was flaring. She decided to go that day anyway and allow them to take a sample (not sure how much there was to sample because it was never drained again after that, so I am going to say that there probably wasn’t much) to see if it indeed contained cholesterol levels high enough to warrant consenting to this procedure. As luck would have it, they weren’t going to have the results the same day (despite the lackey, stalling to give the lab time to get the results). She could’ve gone back the next day, but she was sick of wasting time being in a hospital all day…this bullshit we call ‘healthcare’ had worn her down.
Lea agonized over this decision and I didn’t feel like she had enough information to back up the reasoning behind this procedure and she knew it. Waiting for and knowing if the effusion had cholesterol in it would be a sane approach to this decision because this sample would’ve been more telling. It was definitely more current than the one they’d sampled a week earlier, which was lingering from her falling to death months before. This was putting the cart before the horse but the only one who would be paying for any damages that may incur was Lea.
They say that many of these procedures/tests don’t cause any harm, but I highly question that. If there was a contraindication with the use of Ethiodol (which is what I’m assuming they used because they didn’t say, but there’s also Lipiodol too) for patients who’ve had radiotherapy to the lungs, I wonder why this was even on the table in regards to her care (she’d had radiation treatments in January). I have many questions but will never have answers, especially when I discovered things about how this could affect the liver. I’ve never felt like I’ve been allowed to ask questions and know that I would never ever have been given any answers anyway.
I wish I could go back. I wish I’d gone with her that day. I wish I would’ve stood my ground and politely said no for her. I wish I would have.
The gut instinct I felt was strong and hers was too. Lea even called me before consenting and we talked. She didn’t want to do it but she was so worn down from juggling all of the appointments, trying to recover, take care of her family, and trying to keep up with researching and making the right decisions for herself.
The anxiety of death and the stoking of this fear took priority because she was possibly dying of this new and rare thing now. She was stressed, uncertain, and afraid and yet she was the one who was left to make the call. This is one hell of a slippery slope if I must say.
On one hand, we have people who need some of these tests that don’t get them and on the other, there are many being subjected to far too many needlessly. Both can have dire consequences. Where is the balance?
Looking back, I wonder…no, I know this was a grave mistake. It was a bloody fishing trip. Hindsight constantly bites me in the ass on this one and I still can’t believe she went ahead with it. It was an irrational decision because of exhaustion from navigating the healthcare industry, exhaustion from processing tons of information to decide the best course of treatment for herself, and exhaustion from being deathly afraid of dying due to her illness, also known as burnout.
After how many hours of waiting for this dye to infiltrate her lymphatic system via her groin, they couldn’t verify if she’d had an actual chylothorax and told her that they probably sealed it and that’s why they didn’t see it. The magic of modern medicine, don’t you just love the Emperor’s New Clothes? I guess that taking another sample could’ve verified this down the line, but there wasn’t any real proof of it in the first place.
As luck would also have it, she spiked a fever shortly thereafter, with Lea citing the flu as the cause. This was considered a rare side effect of the test…I despise that word and I think we were done with everything being so fucking rare. Upon calling the hospital, as instructed, she was told that she wasn’t considered immunocompromised and basically that was that.
The sample results of the pleural effusion they took that day were available to Lea when she went back to the clinic a week later. Anyone want to take a guess at what that told her? The cholesterol level was low, it was present but minimal…more than very likely, NOT a present or active chylothorax but of course, they insisted that if there were, their procedure patched it. I don’t want to comment on how that made her feel, but it was bad.
In the days after, she justified the lymphangiogram by saying that at least she had peace of mind in that if she did have this chylothorax, it was probably sealed by the procedure. The literature that I’d read at the time was subjective at best. I didn’t buy any of it. The justification was an attempt to make herself feel better about doing it but eventually, she no longer bought it.
It bothered her that she allowed herself to be subjected to this procedure without any benefit whatsoever. Especially after putting two and two together after the fact. At the very least, she was free of the PleurX catheter and she was no longer afraid that a chylothorax was going to steal her life away like a thief in the night. Now there’s a new Dr. Seuss character waiting to be written about.
She did go back to have her right lung drained once, maybe twice more, but the effusions had basically slowed down and stopped. The left side seemed to be fine and didn’t accumulate any more fluid if I recall. I highly doubt that the lymphangiogram had anything to do with that. Nonetheless, it was an excellent sign and one that I took to understand that all was going to continue to be well.
Lea took comfort in that too. She went to be with my folks and my brother’s family for Christmas, while Clem and I stayed home and relished in some peace and quiet. Lea and her family spent New Year’s Eve with us and I will treasure that evening with them forever. We all had hope that there would be another year full of birthdays and other celebrations with another Christmas to celebrate all together.
Her next scan was in early January 2019, and as everything had been improving remarkably up until then, we’d expected either a little improvement or stability at the very least (admittedly, my gut was telling me something was on the horizon but I was ignoring it). We were getting comfortable living with her cancer again and accepting that a result indicating that she was stable meant that Lea was still alive and could live a modified but full life. We were optimistic but cautious and we really weren’t expecting any surprises. After all, we’d just been to hell and back, life and karma would give us a reprieve…wouldn’t they?
As we were all preparing for a positive year, Lea did her usual scan. She was feeling pretty good and all seemed well. She may have mentioned a few twinges here and there, but chalked it up to paranoia and it all being in her head. She hadn’t moved far enough away from her experience with death and it was still too fresh in her mind because it messed with her.
When she got the results in mid-January, none of us had expected the news. Those twinges she’d been having, well, they weren’t all in her head. The cancer in her liver had exploded and apparently, spread like wildfire. Shock and panic hit us like lightning.
We had nowhere to run, no more miracle pills available here in Canada and time wasn’t on our side. Back into the fire we went. All I can say is, cancer is one formidable bitch.