From Deathbed To Pre-School Graduation In 5 Days

I witnessed the strength that some talk about in utter awe when they witness the unimaginable feats that surpass the known capacity of mankind. Her sheer will and fight to live was stronger than anything I’d ever witnessed in my lifetime. Against all odds, Lea slowly began to win the battle and survive.

I’d prepared myself for her departure and almost willed it to end her suffering. Her suffering was worse than all of ours, but make no mistake, watching this cruelty has changed every ounce of my being. The human body can endure incomprehensible horrors but the mind almost more so, depending on not only the will of the human, but their determination as well.

Searching for meaning

I had been prompted to search deeper within myself after Caelan’s journey, and I’d picked up a book called Man’s Search For Meaning by Viktor E. Frankl. It’s been a few years, and I admit, I have had difficulty reading his book, especially about his journey in a Nazi death camp during the Second World War. I feel that suffering needn’t be a part of living in order to understand the deeper meaning of life and it was in these moments that I found a connection to Frankl. I can honestly say that I am still working through this book (I’m only a few pages into it in how many years) very slowly because I find many of the past atrocities of man too traumatic to even read.

Witnessing Lea spiral to a painful death, deeply wounded me in ways I cannot even explain. Justifying any form of suffering is sadistic. I agree, there may be some out there who may have to learn in ways I don’t agree with, but I’d hope that we’ve evolved enough that most don’t have to. Again, the telling of our stories and allowing ourselves to be human and allow our emotions to guide us in understanding, should be enough to at least form an understanding of suffering, without ever having to endure or inflict it upon another living being.

I often wonder, have we truly evolved, or will we ever? Sometimes, I think we’re fooling ourselves into seeing things that aren’t there because we can’t handle what we truly see in the mirror. We’re wanting to see that we’ve changed, but I feel like we just haven’t.

Distorted realities and miracles

It’s that, or our mirror or perception of ourselves is distorted. I see many compassionate human beings, but perhaps many of the ones in the limelight or the focus of our society, aren’t. That’s certainly something that’s a problem, especially for the youth of the world. Where are the compassionate leaders of our civilization?

Her recovery was a miracle of sorts. Yes, you can be a non-believer and still believe in miracles in my books. Every single one of us is a miracle, when you look at the probability of each one of us even existing. I’ll be honest and say that I knew what I was witnessing at that time and it’s definitely not the norm.

It didn’t happen completely overnight, but it did happen rather quickly. I had difficulty believing it with my own eyes, and I think much of it came from Lea herself. I wonder how long she would’ve survived without this new drug because her bounce back seemed surreal and just plain unbelievable.

The long road to recovery

Her pain began to subside, and her body began to function once again. Yes, her bowels slowly came back online, since modern medicine is all about shit. Part of that was also because she was starting to be able to eat and drink small amounts again and this miracle drug, was kicking her cancer’s ass…yet again.

I can’t remember exact dates and timelines because so much happened but within a couple of days, maybe 2 or 3, she was a completely different person. She was able to visit without being in overwhelming agony but would tire quickly, as the cancer had eaten her body. She was so thin and gaunt despite the tree trunk legs and swollen abdomen and she reminded me of a skeleton wearing the stomach and leg portions of one of those inflated sumo wrestling suits.

It’s not something I’d ever imagined a dying human would look like and the grotesque image is burned into my memory. It’s a little odd, and funny I suppose, but I remember the day she asked if I’d shave her armpits for her. I know, we’re not a normal family by any means, but I gladly offered my services. Armpit shaver extraordinaire at your service!

A word on shaving hairy and hollowed armpits

I have to say, shaving an armpit that is not your own, is a difficult task. Attempting to shave an armpit that is sunk in and resembles a long, deep banana shaped bowl that isn’t your own, is an expert level task. I tried very hard to be gentle and I didn’t want to give her razor burn or cut her, but I tell ya, the razor we were using, didn’t seem to fit that kind of shape.

I had to bend and contort myself in ways I didn’t know I could. I was sweating and frustrated and all I could think about was how nice it’d be if she had a little fat on her body to help out. I laughed because I was happy that she was alive and that I had the chance to do something to help make her feel better, but realizations were flickering through my mind about how horrible this disease had ravaged her once very capable and healthy body.

The up close and personal nature of attending to Lea’s most basic needs, solidified the fact that this disease is more than just about an immune system gone awry or any other single factor that’s been identified. Watching everything go to shit, including organs shutting down and the body filling itself with fluid to help fight to survive, goes to show that cancer needs more than just a one track work around to combat this disease. It encompasses so many systems and processes, and I wonder, do these alleged ‘experts’ have any clue what they’re doing?

Mad collabs baby

You know, maybe getting every single one of these ‘experts’ into a room together to discuss and collaborate with the patient would be a good place to start, but this group doesn’t work that way. We have pain specialists, liver specialists, lung specialists, medical oncologists, radiation oncologists, and the list goes on, that meet or discuss without the patient present. I don’t think any one of them acknowledges that they all need to work together for the individual, with ideas that pertain to that unique individual. It would appear that piecing their standard of care contributions together like a scrap fabric quilt, without having any idea or deeper understanding prior to, isn’t the answer.

Even though we were told Lea had lung cancer (Was it? What if it wasn’t and this mutation could have possibly started in her liver?), I’d wished they would’ve spoken to an expert in liver cancer separate from the lung when her liver became the issue. Shouldn’t this have been considered? I know they never considered it here.

Where’s the support for whatever systems (if any) that are still online and functioning to help the body fight? Lea often mused if cancer was a survival adaptation and that maybe we had yet to understand that, and instead of attacking and killing this cancer, we should possibly do the opposite? I often think, where are the real trailblazers who seek to understand and perhaps think outside the box to search for answers?

WANTED…preferably alive and full of ideas

Have they died off or has medicine hit a wall and no one is motivated? Maybe their hands are tied or they’ve been silenced and can’t do shit because of ridicule or repercussion? You have to wonder the lengths people will go for money, so how are these ideas so far-fetched?

Have they lost their mojo, or perhaps we as a civilization have lost the ability to think in different dimensions because of our technology or lack of creativity in the natural world? I don’t know, but at this stage of our development, we desperately need these people and some motivation. I think that everything we’re doing, needs to be rethought.

You have to wonder because humans have allegedly done some very complicated things in the past and now, now I really wonder. Did we actually attain the supremacy we brag about, or is it all just a façade? I hate to say it because it sounds so crazy, but could there be a possibility that we’ve been and are being lied to?

I know there are limits to what we can do, but have we maxed out already? Or, have things become so corrupt that human triumphs are being stifled? I don’t think it’s unreasonable to ask such questions. After witnessing the demand for the T4 slip earlier, I realized the blatant power of greed and the extent to which certain humans will go to attain wealth and power.

Ugh, seriously…

As my sister got stronger, I was mortified one day, by the demeanor of the doctor who was in charge of looking after Lea in the hospital. The one who never said a thing about her dying and was focused on getting her unplugged. Yeah, that one.

In the days following her new treatment protocol, and her drastic, miracle like improvement, he finally admitted that he didn’t even think she was going to make the weekend, let alone survive period. How’s that for a kick to the gonads? Actually, I think I’m still trying to swallow mine back down.

I hadn’t seen him myself prior to this, but when he’d finally stopped in while I was there, the pompous, narcissistic and nonchalant attitude hit me in the face like a stream of piss gusting in the wind. Oh yeah, he knew she was going to battle back after starting the new treatment, she’s a fighter, almost like he sort of enjoyed bringing her to the brink and then ‘saved’ her life with his own sheer will. Seriously Dude?

I just don’t get it

I don’t understand these people at all. I try and I feel for them and then sometimes I feel like they need to be brought down a few thousand levels. Yes, they went to school for a long time and their level of intelligence…well, I’m sorry to say, but I’ve witnessed intelligence in many forms that don’t have the years of schooling they have and I’m not fully convinced it’s all about a piece of paper…doesn’t demand that people treat them like royalty, fall at their feet and kiss their ugly, disgusting asses. As I keep saying, be a bloody decent human being and stop being pompous assholes.

I was really taken aback by this guy’s demeanor and my sister sang praises that made me look at her like she was completely insane. I’ve had to realize that she wasn’t truly present during her rapid descent toward death, and it wasn’t until she had time to reflect back later on, that she acknowledged what we’d seen. I will continue to keep saying, perception and perspective play a huge roll in our interpretation of our experiences, and this was one of those cases, where bystanders and those directly involved, have different storylines.

The hindsight of this experience is terrifying. There’s just no going back after this. As much as I’d like to change my mind, I know what I saw and experienced. No one is perfect, and I can’t imagine working within this realm, but this is really messed up.

She nearly died, give her a minute

During that time, I witnessed another doctor stroll in to talk to my sister about filling out her personal directive. He said that she needed to contemplate these things, despite the difficult nature of the topic, in the event something were to happen again. I felt that it was cruel because she’d been so close to death and was just getting back on her feet again but I understand why they were discussing it.

It was the pressure to fill it all out, just after she started to become cognizant again, that disturbed me. She needed a little time to digest, was that asking for too much? I can’t imagine talking to someone and expecting them to make these decisions, immediately after they’ve experienced the unimaginable, could you?

In seeing that, I knew that she’d probably end up down this exact same path again and their urgency suggested that it wasn’t far away. The pompous main doctor kept telling her to consider living in the moment, as there were no guarantees as to how much time she would have left. I agreed with that wholeheartedly but my sister was absolutely determined to beat this disease and live as long as she possibly could.

Wrapping our heads around mortality

I feel that that wasn’t entirely a bad thing, but I could understandably see that she had immense difficulty in accepting her reality. I couldn’t accept her reality either and would have probably reacted the same way. Accepting our own mortality is beyond our mental capacity I think. It’s hard to imagine a world where you just no longer exist. Poof and you’re gone, just like that.

That’s something I think we all struggle with. We’re all human after all. It was difficult to know the reality of another and watch helplessly as they attempted to defy the odds because they didn’t want to accept what is. It was torture for me.

As the days blurred by, school was coming to an end, and we’d mentioned to Lea that her eldest son’s pre-school graduation ceremony was just a few short days away. As she’d completely lost track of time, this event urgently and suddenly became her priority and goal. She was determined to be there because she worried that it would be the only graduation ceremony she’d ever attend for her children.

Enjoy the moments

A pre-school graduation. I don’t know about you, but now that I’ve had the chance to actually sit and think about this, it makes me feel beyond immensely sad. It sounds silly, but that’s a tragedy. What century are we in?

After shaving Lea’s impressively hairy and hollowed out armpits, I remember grabbing the lotion we’d brought for her and getting down and rubbing her fluid filled, swollen legs. She was having difficulty lugging them around and I was determined to help dissipate the fluid, if I could. She was gaining a little more energy with each day and I wanted her to recover as quickly as she could so that she could live what life she had left.

Lea always loved a good back rub or any kind of pampering. She seemed like such a hard ass and she was tough, no doubt about that, but she was such a gentle and nurturing soul that always put others first. She was always first in my mind, and anytime I could spoil her, I did.

The things we do when we feel helpless

In those circumstances, when I felt most helpless, I always reverted to the little things wherever and whenever I could. I never felt like I was doing enough but I don’t know if trying to soothe her was in essence my subconscious attempts to also soothe myself. It’s interesting to reflect back on these moments because I’ve never seen myself as the nurturing and soothing type but maybe it was more for me than it was for her. I guess that’s something I’ll never know, or it’s something I’ll understand later on.

Lea was barely off of death’s door but she’d asked if there was even a remote possibility of making it to her son’s grad ceremony. Now, as much as I was pissed with this doctor and a few others, it doesn’t mean that I am not grateful or thankful when they are truly empathetic, caring and actually being compassionate human beings. Honestly, it’s very confusing and I just wish they’d all be human beings and not the automatons they’ve been trained to be.

Some folks may prefer an automaton but I don’t. It’s cold, harsh and alien to me. I understand real human beings and I find things easier to accept when I can relate on that level. I’m not asking for someone grossly and overly sensitive, I’m just asking for a human being who is a bloody human being.

Despite my ranting, I do understand

I understand that medical folk don’t want to be affected emotionally, but I do feel that that is inherently a huge part of our survival and can be useful and rational as well. I may be out to lunch, but I think my sister related more to her pompous doctor when he was a sincere human being and not a cold, foreign automaton. The understanding conveyed through a normal human connection, sat better with her and she accepted his advice and experience readily, compared to when he was a peacocking narcissist.

We, as humans, can learn to detect bullshit and fakery…well, maybe it’s most common after being burned a few times…and that creates rejection. So, I guess what I’m saying is, by being a regular Joe, if that’s even possible for them, goes a long way sometimes. Don’t get me wrong, they can’t be incompetent either because I see popularity for good natured doctors who are completely incompetent too, and I just think we need that balance is all.

If you have to provide empathy training in medical school, I think there’s a problem. I understand that there may be significant talent in someone who isn’t naturally empathetic, but it’s kind of a red flag. After reading a book about the Nuremburg Trials and what that encompassed, I have to say, it’s pretty scary living in this world, at this time, with all of the knowledge we have. History is continuing to repeat itself and we should be very concerned about that.

A second miracle and gratefulness

Lea’s main doctor was very supportive of her and said he’d move mountains if he had to, to get her to the grad ceremony. He said he’d drive her in an ambulance himself if he must. I suppose that he redeemed himself in that human moment, backing up his advice about living each day to the fullest and not counting on a certain future. He earned my respect and appreciation for what he did next, and for understanding the importance of this event in Lea’s life.

The moment he knew about it, he began getting things in place and evaluating her needs on a constant basis to gauge what he needed to do to get her there. When the day finally arrived, what had started out as a day pass with her returning shortly after the ceremony, turned into a 24 hour pass and returning the next day. If that was another miracle in the making, I have been blessed to have witnessed two in that time.

It took a few hours to get all of the pain medications together, complete with instructions and anything else Lea needed. Clem and my mom went to pick her up and anxiously awaited all the details to be finalized so that they could head out. We had no idea what was to come for Lea, but the excitement of her return and the celebration of her son’s pre-school grad, stole the moment and gave us a tiny escape from the sad realities of the life we’d been navigating.

I no longer take things for granted

Lea was in no shape to be out and about. She was still in pain (much better managed but still very present) and was dealing with exhaustion as her body attempted to heal and recover itself. She had fought to get to a class tea party for her son about 3 weeks before her hospitalization and I have no idea how she did it.

I remember how excited my nephew was to have his mom for tea and cookies for a class Mother’s Day party, but Lea was in really bad shape. She had no idea if she was going to make it and I said I’d go if she couldn’t. It’s hard, you know?

To even attempt to be a stand in mom for a child whose mother is sick and dying, is an impossible order to fill. I can’t imagine being the child, let alone the mother. Just being the stand in, hit me in places I’ve never been hit and it evoked painful feelings I’d never imagined. It’s awkward, painful and the rejection you feel when you’re not good enough, those are things not normally felt by many human beings in this capacity.

Those feelings will stick with me forever.

But this day, this graduation day, Lea persevered. The power of motherhood and the knowledge of not ever seeing her children graduate from high school, get married, or have children of their own, gave her the strength to attend that day. Once we ushered her into the ceremony, the happiness of that moment was washed away by the reality sinking in of a future not to be.

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