Where Do You Go From Here?

A continuation of Lea’s story.

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As I’ve written before somewhere, I never thought that this would be a path that I’d take in my life. I never considered myself a writer nor considered the act of doing it and I often wonder if Lea would’ve approved. I’ll never know.

A year and a half later and we’re all still very raw. I worry about my family and how we’re all wading through this journey we call grief. Only time and space will remedy this. Honestly, I find that I fight time and space because the mind tends to forget over that span which in turn lessens the pain and sorrow but I don’t want to forget, I just want to heal.

As I hate to sound like an angry broken record, I think reflecting upon a past writing about the reasons why my sister did what she did will help save some space and time. So, if you wish to indulge in my previous rant, look no further than here. Or not, as I tend to continue to rant anyway, ha!

Explaining why isn’t easy

When writing, I’m trying to help others understand some of the many whys surrounding the decisions that people like my sister have/had to make. I’m hopeful that an understanding eventually develops, but it feels like a long shot. At the very least, I hope it generates the compassion and support people need when dealing with illness and not the ridicule and insult that they may receive instead.

I know that I’ve certainly changed and will continue to over time. This wasn’t something I thought would ever happen in regards to my opinion of medicine and science, but I’d never encountered situations such as these before and never had to consider anything. I was hard-core, and I mean hard-core.

I was adamant (that’s the nice way to describe my behavior) about my opinions and soon realized that I hadn’t formed informed ones, nor any based on my own experiences or in relation to my own health. I’d just followed what I was told and you know what? That has cost me big time.

Forgiveness of thyself isn’t easy either

I’m still trying to forgive myself for being the raging lunatic that I was because I was someone who criticized and insulted others for not following the expert’s advice. I was wrong to dictate and now, I understand and feel the fear that the people I vehemently beat down felt. I never imagined that my day of reckoning would arrive in this form, and let me tell you, it’s been a school full of hard knocks.

That January, in 2019, I’ll never forget Lea’s panic because I felt it too. It was too soon in her journey for this to be happening, we still had a couple of years before death at least, didn’t we? With my back against a wall, I really started to question everything and realized how very little knowledge and control we have despite the peacocking and overconfident portrayal that we do, in regards to medicine.

I was in denial at first, and hanging by what little delicate threads of hope that I’d had left. Like anything, they eventually became frayed and weak and it was the anticipation of them finally breaking that really amped up the anxiety. The only thing I had left to hold on to, was barely hanging by a thread.

Survival mode

As we still had our boots on and on the ground, it took no time to start putting things into action. Lea had already been fielding some avenues, one, in particular, was Cuba for an experimental vaccine called CimaVax but they told her she wasn’t a promising candidate (not certain why exactly). Mexico was on the table, as was the United States.

The other oncologists that she could’ve dealt with at the hospital here were allegedly worse than the one she was already dealing with, so that road was a dead end. They wouldn’t have offered anything different because as I said earlier, they’re all the same single illusion standard of care, bullshit, one trick magic show (I don’t feel we’re very 1st world in this area). Lea was backed into a corner.

If you want to see what someone is truly made of, back them into a corner or apply some pressure. Some may buckle and crumble and others come out swinging. It all depends on the person and some might just surprise you. Lea, she was a fighter.

Stand up for your damn fine self

You’re either going to take shit sitting down, or you’re going to stand up and give it back, the option is all yours. I feel like modern medicine banks on people not standing up to them, which has led to the shitty decline in much of what they have to offer (just look at how they respond to allegations). That said, I think we are most definitely more ill now as a civilization than we have ever been, and yet we still don’t ask or figure out why and how to best remedy ourselves or prevent it in the first place (screening programs are not prevention…that’s the detection of it already occurring, not preventing it, in my opinion). It’s the same disappointing pile of shit over and over that creates folks like my sister and myself.

The accommodating oncologist that first presented himself as being open and progressive, quickly vanished shortly after Lea began inquiring and researching, which wasn’t long after their first meeting. I’m not sorry to say that the façade they front during those first meetings in order to secure clients, is a farce. The things I’ve come across over the years in regards to the art of persuasion that they employ just solidifies my feelings.

As I had been reading everything and anything about EGFR lung cancer from day one, I noticed a pattern of similar regurgitation on differing letterheads from all over the place, but no new or updated information was presented. Much of the information on treatment protocols and their outcomes, always seemed to stem from the pharmaceutical companies themselves and not from results accumulated from alleged independent oncologists or treatment facilities. If I did manage to stumble upon anything different, results varied which made things really confusing.

Statistically speaking

Attempting to determine outcomes due to where metastatic spread had occurred and how that corresponded with the use of these drugs, was all over the map. No one had the same thing to say. Some would say one thing and another the opposite.

Targeted therapy versus chemotherapy was another fun read and I didn’t find those helpful because chemotherapy is often used after targeted therapy fails anyway and made the studies I’d read about lone chemotherapy treatment, overly optimistic. Trying to find anything age-related in regards to the many different factors and how that affected the survival rate was slim pickings. Immunotherapy, well there’s another fun thing to try and read up on, digging through pharma fluff consumed precious time and often caused frustration, but I did it anyway.

Is it too much to ask for an oncologist’s own statistics and not the ones they belch out from the pharmaceutical company’s handbook? I want to know. In evaluating the many facets of care, can the person doing the treating, make a difference in the outcome? It’s just a question.

Different avenues and the criticism they generate

If you want to fight, you need to find someone who isn’t afraid to get into the trenches with you because I can tell you, the energy wasted on attempting to tolerate one another while being cordial and respectful throughout the journey, is a waste of time. Not to mention a waste of energy and life. I’m not saying that all oncologists are like this, but I think that there are many who are, as was our experience.

Lea began to branch off, and many people tend to label and discriminate as soon as alternative or complementary medicine falls out of your mouth, but where the hell else do you turn when medicine has basically done what it can (Lea had been offered chemo…which was the end of the line)? Sometimes, this is the only avenue left for some people and many others believe in something more or integrative in regards to their treatment protocol, or they’re looking to boost their conventional treatment. There is absolutely nothing wrong with this, they are fighting for their lives the best way they know-how, but you also have to be aware, that there are opportunists who swim within these waters as well.

As I’ve said before, both sides need some major changes, especially in the integrity area. I know from experience that not everyone responds the same way to everything and if a patient is going to enlist in whatever type of provider they choose, they deserve respect and dignity. Is it so difficult to be humble? If you’re willing to take someone’s money and provide exceptionally shitty service, you shouldn’t be doing what you’re doing…end of story.

Money gets in the way of care, plain and simple

I don’t know how much regulation goes on within the alternative medicine realm here, not that government regulation is to be fully trusted in my book, but there is a need to set a standard. I’m sure that many of these practitioners know this, especially because people are watching them carefully, scrupulously so, and I’m certain many try to rise above, but there’s always gotta be some shysters in the pack. I’m not saying that the one particular individual I’m thinking of was, but Lea was disappointed that he wasn’t on the same page when he would give his opinion on her latest bloodwork.

I can’t remember costs but she’d mentioned I believe $50/email and I thought something along the lines of a $250 fee somewhere down the line or per phone call (don’t quote me on this but any type of communication cost her something). Due to these costs, she was hesitant to reach out. I remember her asking me to confirm what she’d been seeing, which was that she was looking at the most current bloodwork he had ordered and knew he was looking at the previous ones (which was wrong) when he’d finally report back to her. She despaired over that one because this person was the only one she could find in Canada offering the therapy she desperately sought (DCA [dichloroacetate sodium] Treatment, but she wanted DMSO [dimethyl sulfoxide] but it wasn’t available here at the time).

Again, both sides need work, and I see value in both. If medicine and alternative medicine could get on the same page where the patient and their wellbeing come first, I think this would go a very long way. This isn’t a far out there concept, there’s still much to be learned about the human body, is there not?

Challenge breeds change…do they know that?

Science is and always will be a work in progress. ALWAYS. People seem to forget this and believe things to be set in stone and that is that. That’s not scientific, nor does it help to advance the health of our civilization. Just look around.

I feel very strongly that that is exactly why we are where we are and really not getting anywhere fast. As I’ve said before, having an open mind and challenging the ideas to become better is something desperately needed right now. What could we possibly have to lose by expanding our horizons? I know the answer to this one, yet many are still in denial, unfortunately.

If that gives you an idea as to why people turn to these things, my words have served a purpose. Instead of criticism, perhaps we should be supporting these people because many are at the lowest point in their lives and for some, this is desperation. I think we human beings have become so disconnected from one another, that we don’t even recognize desperation or we’ve learned to ignore it. It’s sad that we’ve gone a step further and have added insult and ridicule to that as well…real slick.

Why is this even a question?

This doesn’t help anyone. People have the right to choose what’s best for them and as we are not them, how are we to judge? Put yourself in their shoes, what would you want for yourself when you’ve exhausted the socially acceptable options, death? Most of us don’t want to die but yes, eventually all we must accept death, but it goes against the grain to just lay down and die for many of us.

There’s nothing wrong with those who wish to fight, it’s human nature to not want to give up and we all hold this little thing called hope within us. I’m not trying to get all squishy here but my sister had only just turned 36 years old. That’s young. Her children were only 3 and 5 years old, you’d fight for your children or someone or something, wouldn’t you?

I think that all sciences should be working together and honestly, the mind affects the body…they are attached in many ways, are they not? Modern medicine seems to deny that. I’m not saying that the mind heals all (maybe? I really don’t know but I have read some interesting things about the placebo effect), but it’s certainly a part of our overall wellbeing, and neglecting this (I think), can have an impact.

Reframing to fit

To deny that the mind has nothing to do with physical health is laughable. It’s interesting that modern medicine spends time screwing around with the chemicals within our brain while denying the large role it plays in our overall health. So, if they accept this philosophy, it’s okay to adopt it, but not from the labeled quacks? Gimme a break and have some respect.

I can’t say that the mind alone will cure cancer, if only, but I often wonder how negativity plays a role in our physical state. As this is obviously difficult to gauge, I can only assume and wonder about the possibilities. Perhaps we will have more answers with time, but I don’t think it hurts to consider the mind when treating physical afflictions.

At this point, Lea had been trying to live her life the best way she knew how. She was attempting to be positive and enjoy each moment that she could while navigating the course of her disease. It was deflating to hear that her oncologist basically waved everything off that she was willing to consider, which I see is now being integrated within their archaic treatment protocols, and that at the time, she was merely offered an old, outdated, and unsuccessful chemotherapy regimen as her only next step if she were to remain with him.

I don’t feel bad for them, they’re holding themselves back

One of the things that pissed me off the most, was the fact that she’d asked about the possibility of trying TACE (transarterial chemoembolization) for the tumors within her liver in January (remember this for the future). This was completely pushed off to the side, even though it was being attempted at a nearby university (as I like to say…what the fuck?). Yes, it’s for liver cancer and at that time, that’s where the havoc was being wreaked and nowhere else. Why not try?

That entire wave of the oncologist’s hand, dismissing anything and everything, was a major blow because out of all of the people in her corner, she’d relied on him to be open-minded and progressive like he said he would. If you think that the words you speak or the promises you’ve made don’t have any power, consider how you’d feel if someone you had to trust and rely on, ditched you in the middle of the battle of your life and how that’d make you feel. Lea’s safety net now had a huge hole in it. A big one if you consider that we cannot advocate for ourselves within this institution we call healthcare while having to rely on those who are approved.

Having a small mind in the way of receiving a potentially life-altering procedure or gaining access to a potentially beneficial medication is frustrating. At this point, Lea was willing to try almost anything and be a guinea pig of sorts. What did she have to lose? In that breath, could this have potentially been an opportunity for someone to possibly find another avenue for treatment from a willing participant…do they realize what they lost?

Strategy

If you want to win a war, take out the strategists and chip away at the supporters. Despite having all of the heart in the world, you can’t win a war without a plan or support. Suddenly, this was where Lea found herself. She needed to find other allies and a new approach that would support the fight in her heart. It sounds frou-frou, but I believe this went a long way in regards to the quality of life she lived in the final months of her life, validation goes a long way (I experienced and realized this when I got out of my comfort zone).

If so many turn to religion and accept a higher power, how is this any different? It’s just hard for me to accept that we judge so harshly without pause. Lea never hurt anyone in doing this and if it brought her any comfort at all, that’s more than we could’ve asked for. As it turns out, I know of one particular person who passed away a few months ago, who lived longer than expected because of Lea’s influence I believe, she was 19 years old.

I don’t have the scan results from January 2019, but the results from March tell me some of the tumor measurements noted from then. Lea’s liver was a problem the entire time, aside from when the lung tumor grew and was radiated successfully previously. In October 2018, the imaging report basically didn’t have much to say and the multiple hepatic hypodensities (tumors/lesions in her liver) had decreased in size and were poorly defined with irregular margins. 2 of the lesions were used as examples as to how much they’d decreased since July, one measuring 1.2 cm (0.47 in) X 0.9 cm (0.35 in) was previously 1.4 cm (0.55 in) X 1.4 cm (0.55 in) and the other measured 0.6 cm (0.23 in) X 0.6 cm (0.23 in) in October and was previously 0.8 (0.31 in) cm X 0.7 cm (0.27 in) in July.

The unfortunate reality of cancer

In January 2019 (according to the March 2019 imaging report) in regards to the liver alone, the report stated there were scattered hypodensities, and there was substantial worsening in other previous lesions.  One measured 3.2 cm (1.25 in) X 3.0 cm (1.18 in) and another was now 1.6 cm (0.62 in) X 1.3 cm (0.51 in). That is quite a bit of growth in a short amount of time while taking a medication that was to help combat that. Looking solely at the liver alone, it was like Lea was taking nothing at all.

Nothing else was really cooking at that time, and again, the lymphangiography she’d previously had was still showing the nodes within her abdomen and pelvis. That would’ve been there for the next 2 years if she’d survived that long. They don’t think that doesn’t cause any issues down the line because why? I’m sorry, I question.

Lea called me one day and began to tell me about a book she wanted to read. I own a Kindle, so I just fired it up and downloaded the book, and began reading. She was fascinated by Jane McLelland and her book How To Starve Cancer. She had also been following her on Facebook under Jane McLelland Off Label Drugs For Cancer.

The next step

Now, I know what many are probably thinking, but remember what I said above, where do you go when conventional therapy no longer works for you? Where would you go? If you’re not ill, you’re likely to say you wouldn’t go with some quackery (I despise this name by the way, and find it utterly disgusting), but I’m willing to bet that many would be willing to try nearly anything in an attempt to save their own hide after conventional methods fail, within reason of course (if someone told you to stick a live cobra up your ass, I’d say that’s extreme and a little insane).

If not, I admit that I’m wrong. End of story. No harm no foul, but if it were me, I’d probably be throwing everything I had at whatever ailed me, and in the past, I have.

Anyway, Lea stumbled upon some things like I.V. Vitamin C and decided to investigate whatever else she could, to try and get a handle on what was happening within her body. She wasn’t going to be a passenger anymore, she needed to be the one driving. The only way she was going to be able to do that, was to start learning.

The Care Oncology Clinic

She made a phone call to the Care Oncology Clinic (COC) in the United States (I don’t think they had one in Canada yet) to start the process of figuring out if she could use repurposed drugs to help battle her cancer. For many, I’m certain that hearing the term repurposed drugs isn’t new, especially if you’ve been following the Coronavirus this past year. In 2019, I would’ve never known about it if Lea hadn’t introduced me. I admit, I am uncertain how I feel about this concept but I will definitely not knock it if it’s working for people, I know better.

Is this a legitimate pursuit with the ultimate goal of helping to cure people, or is it to revive potential profit? I have no idea what the answer is but there could potentially be something to this for someone. If doctors are getting on board willingly and openly working with patients to help cure these horrible diseases, that is a huge win in my mind.

Finally, some mutual respect and collaboration. I only hope it doesn’t morph into some huge monetary enterprise with doctors raking in the cash. We really need to take money out of the equation in regards to illness, seriously.

He had a nice house and a cute dog, what’s not to like about this new doc?

I was there when my sister had her first meeting with her COC (Care Oncology Clinic) doctor who was quite an interesting character. He said he was a retired surgeon who was fascinated by this idea and decided to take the plunge. When we first met him, he didn’t seem totally prepared because he had just started with the COC, but he answered what questions he could and those that he had no answer for, he found out.

At this time, all Lea had was Jane’s book and from there, she had to decide the course of her treatment and present it to her COC doc. I don’t know how many people they had with Lea’s type of cancer but she threw herself into the Facebook community and became quite an expert in regards to the information surrounding the concepts. She was reaching out to help others wherever she could and raised many questions and floated some of the ideas she formulated.

I think that belonging to this community helped her immensely. She had the opportunity to converse with others who were in similar situations but I think the opportunity to give back and perhaps see some improvement in another, provided healing, hope and gave her purpose. She was a selfless, kind, giving soul and I am proud of her for that.

I wish I knew more

I believe Lea did most of her own prescribing and I think the COC doc did more research and recommending over time. The COC doctor was responsible and accountable in getting her the information when she asked, which filled Lea’s cup and gave her hope. Surrounding herself with like-minded people in a positive environment ignited a passion and talent for discovery that I’d only ever seen when she took something akin to a sports medicine class in high school. She could’ve done very well in medicine I think.

Looking through what notes I have and seeing some of the information makes me wonder if anything did any more harm than good because of the side effects, but as I’ve said before, what did she have to lose? So, if you look up things like DCA and see that it causes liver cancer in animals (which translates to me that it has the potential to do the same in humans), I already know, she did too, and she had cancer in her liver already. Knowing Lea, she saw a benefit to using it above that risk and went for it. As I’m trying to cut down on the length of my post, I’ll spare the explanations and hope that if anyone jumps off into these realms, that they do the required reading and research and reach out to those who know more.

It was in these moments, that I see the need for a liaison of sorts for cancer patients attempting to juggle all of the things that they have to do. This would take much of the stress off of these people. I can attest to the saying that being sick is a full-time job and trying to manage just this single facet, is more than a job for one person. Future job creation I think, especially if we have two different forms of care in the mix between modern and alternative medicines, should more people decide to utilize them simultaneously.

Preparing for the inevitable

Once Lea became fully engrossed in the COC and finding other options for future treatment, I began to prepare myself again for the worst. I wasn’t ready and I didn’t give up on her, it’s just that I knew that the time was getting near. We can only outrun death for so long, and it was only a matter of time. I had really begun to hate the life I was living and this culture of running all over and being the perfect mom with the perfect family, all while trying to hide the pain that lies underneath.

People knew about Lea, many avoided asking how things were going, some would but I felt that there wasn’t truly an honest emotion behind it. There are many that think you have to just keep going and be busy to get through it, which is possibly true for some but I feel that was more damaging for me. If I could go back to that January, I’d ditch the things that really didn’t matter and kick down Lea’s front door to have coffee and shoot the shit every single day that she had left, regardless of what we both had going on in our lives at the time.

I should’ve stopped the insanity and taken those very precious and limited moments I had left and cherished them. As I cannot go back, I hope that what I’ve learned will be applied in the future. My eyes have been opened, it’s just too bad it took all of these things to get them that way.

For your consideration

If there’s a takeaway, I guess it’s this. In the end, our opinions don’t matter but our support certainly does. In fact, it holds a lot of power. Consider the person and the situation before offering your opinion, truly, unless they ask for the unfiltered version of course.

If your 97-year-old grandmother, (who suffers from glaucoma and some other debilitating disease), wants to add turmeric to her morning shot of wheatgrass and smoke a joint on the side because her newfound friend Alice (who she met at the medical marijuana clinic) says it’s made a world of difference in her overall wellbeing and quality of life and she’s already informed her doctor and her pharmacist (who are opposed because it’s not their shit to upsell…let’s finally be honest about profit, please), spare the lecture. The same goes for your 36-year-old little sister who’s fighting to get every single moment out of the remainder of what little days she has left because of her incurable lung cancer. Love her and support her because she won’t be here for long and really, what does it matter anyway. Your opinions won’t change a bloody thing to extend her life or make it any better…if only our words had this much power.