Seeing as how yesterday was Valentine’s Day, I postponed this post 😊. A continuation of my sister’s story…
When I reflect back on this time, memories sort of pop up like flashbacks and I don’t seem to remember exactly all that happened leading up to and surrounding these moments or when they precisely occurred. It’s weird because all I know is that certain things happened and I cannot remember much else. I struggle with this because I want to remember everything exactly as it was and in perfect order, but I can’t.
I accept that the emotions that ran through my head may have had a hand in inducing this because they created a vortex of sorts that combined the terrifying feeling of being out of control with chaos and fear and that consumed me. It didn’t matter what I did or what Lea did, it was never going to change the outcome and that was a horrifying reality. Sure, I could’ve changed how I felt about it all, but really, I still wouldn’t have had any control, and the events that spurred these feelings were still terrifying and chaotic. It was basically like water fighting a drain, it was futile.
We’d all returned from our travels in mid-March and while I was happy to be back home, things just felt different. I wanted and tried to be upbeat and hopeful, but it wasn’t long before reality started to slap us in the face yet again. I despise those wake-up calls.
Denial is many things
All I can say is, my denial was like a band-aid, it helped for a while but hurt terribly when removed. It was all fine and dandy when it was first applied, and provided a false sense of security and hope, but as we all know, the adhesive eventually lets go and the band-aid begins to slowly peel off. When I finally arrived at that painful period, somewhere in between when the glue was sticking to the hair, surrounding skin, and perhaps the wound itself, I still had myself convinced that this was far less painful (even though it lasted longer) than fully removing the band-aid itself (I knew that my denial was wrong and yet I still clung to it to avoid that pain).
I realize now, that it’s sometimes just better to rip the bloody band-aid off and get it over with, but of course, that’s not always human nature. We tend to hold on longer to avoid that imminent pain while failing to recognize that leaving it on causes more pain unnecessarily. Sometimes I blame this on my undying hope and others my own bloody ignorance.
My band-aid was about 3/4 of the way ripped off while on vacation with my family. Hearing about the loss another family was attempting to process (I’d been in denial of it happening to Lea, she was going to be that 1%, I was convinced), ripped that sucker nearly off, hair, skin, partially scabbed wound and all. Eventually, I realized that we were never going to be able to outrun this thing. It just had way too much ground covered ahead of us and to think, it began to happen when we least expected it.
Life kept moving me forward, in denial
In hindsight, it didn’t matter how proactive we wanted to be, human beings are severely limited when dealing with this disease. I accept this now and wonder if there will ever be a time when we will get ahead. My gut tells me no.
It’s a lovely thing, this denial. Shit’s happening all around you, but if you don’t wish to accept it, it isn’t happening or it won’t happen. The problem with that is, you end up with a huge pile of regrets to deal with after the fact. I know this very well and knew the time was coming and yet, I tried to appear to keep my life moving forward by shoving my head in the sand, not too far from the most recent hole I’d emerged from.
Some of the moments I remember during this time included my sister-in-law’s wedding (her name is Dani). I was a bridesmaid and she’d asked me to make a few décor items, probably to be nice, and I quickly found myself immersed in it. This is my usual response to dealing with the heavy things in life, I create my own busy-ness. I’m too busy to think about what is happening, which makes me too exhausted to fully engage and feel anything, hence…denial.
Knowledge can sometimes be a thief
I come by this naturally. No, I don’t think it’s normal and now that I am aware of it, I see it happening all over the place in people, so I know I’m not alone. Believe me, it’s good to be busy, but not that busy, if you smell what I’m stepping in.
It was around this time that the pain began to creep back into Lea’s life. It wasn’t instantly horrible, just small twinges here and there but knowing what it would eventually become, was far more damaging than the actual pain she was experiencing. Her previous knowledge, I now call it a thief, began stealing any and all of the possible enjoyment she should’ve been indulging in. Obviously, her liver was being hijacked by cancer again, which meant that pain and death were slithering in…hard to ignore the second time.
Lea was still reading and trying, or adjusting different things. She was engrossed in her COC protocol, vitamin C, and a whole host of other things. She really began to reach out, make calls, and send the emails she’d been seriously contemplating as well just so she was ready to go when or if the time came. We were attempting to figure out what was coming next, but cancer isn’t really predictable.
That was one of the biggest hurdles Lea faced. How do you know when the time is right to make a move? I think we all questioned what would be the right move and wondered if there was any right move by this point. Surely anything was better than not trying at all, but I have to say, sometimes there are steep consequences to trying those different things (as you will see shortly), and perhaps not doing anything at all, is the right next step. It all depends on the person and circumstances.
Her scans were unlike the ones in the past and instead of celebrating the incredible things her body was doing to keep her cancer in check, we were fretting about the future. Attempting to remain positive was becoming quite the challenge, especially when we knew what was coming. We tried, we all did. Honestly, I’d never felt so bloody useless in my whole entire life until the day cancer kicked down my door, starting with my daughter.
I have guilt, remorse, and regrets from these times and I have to live with it every single day of my life. I’ve learned from it, by golly, life and all its experiences have been an exemplary teacher. I know I’m not the only one who has had these life-altering experiences but my Gawd, living in this world we’re living in right now, doesn’t have me convinced of that at all.
Scientific circles devised of nothing but questions
I spent much of my time on Dani’s wedding stuff and Lea spent more time running around in scientific circles in regards to researching. I immersed myself deeper into the reading but realized that most of it was still utter bullshit. Questions led to more questions and at the end of the long line of questions was…surprise! More fucking questions…where the hell are the answers?
I had already realized that Lea had been led too far down the only narrow hallway she was offered and there was no room to turn around and reverse course. It was too late for anything, and even then, there was nothing. I realized that it didn’t matter what stage she caught it at, she was destined for one thing and one thing only because eventually, it always wins.
I spent time with her when I could amongst the things we were both juggling, but we were both off and running on two very different tangents. I’d have time for coffee, but she didn’t and vice versa, that’s life. Looking back, I wish I would’ve just gone and spent the 20 or 30 minutes regardless of what we were doing.
I should’ve walked the aisles of the grocery store with her, sat outside her bathroom door, or helped her clean house or whatever, it wouldn’t have mattered, as long as we were together. Whatever it was that we were doing on the daily, I can say with complete honesty, none of the everyday stuff was that important at that time. None of it.
And now, looking back, the time seemed to have passed as it always had and that’s sad when I think about it. I was in full-on work mode for the wedding and got myself dug into a hole deep enough that I couldn’t even see out of it. I just put my head down and went to work, occasionally removing my head for the odd moment to spent time with Lea but otherwise, I acknowledge now, that it hurt to even exist. That’s a pain that I never want to experience again, but I’d be a fool to think that I’ll never encounter it in the future.
Lea was having to beg her oncologist for the Tagrisso and he begrudgingly gave it in small increments, which meant more agonizing over the up and coming phone calls that required her to beg when she ran out. I swear that this anxiety was just as bad or worse for her than dying itself. Such an unnecessary worry that stole from the moments she should have been having. Yes, I know, the oncologist thought it had failed, but I wonder if perhaps it didn’t in regards to the rest of her body.
Damn you liver
Up until this point, her liver was the problem. Really, the liver was the entire problem. Her brain was fine, lungs (previous radiation treatments obscured the imaging but all appeared well) were stable and it appeared that the Tagrisso seemed to work for these organs. I wondered up until the day she died what exactly was going on with her liver, was it still the same cancer or something else (how is it that this is considered a far fetched question?)?
She decided at some point, forgive me because I can’t remember exactly when this occurred, to have a liver biopsy. Now, if you remember, we were told that they could only test for certain mutations and the only one they would test for in this biopsy was for the T790M which we knew she already had. I think in Lea’s mind she did the biopsy just to see if they could send out the samples to the U.S. or find some other kind of mutation, but apparently, that’s just not how they roll here.
Honestly, it was completely useless and told us absolutely nothing and I don’t know if they would’ve even helped in sending samples for testing elsewhere. I don’t know if she even asked about sending it out either (honestly, she got tired of asking and begging), but I wish she’d spared herself from more useless medical testing. The time spent stressing, agonizing, driving, waiting, recovering, and going through all of this was a complete and utter waste.
As I’ve said before, being sick is costly in many ways. It shouldn’t be this way. Not at all.
A one last for me
As I mentioned, certain things stick out in my mind from this timeframe, and one of the memories that I’ll always remember is the last time my sister did my hair for me. Funny, I know, but previous to this, that was one of the ways we spent time together. We jokingly called it our bonding time, like monkeys picking nits.
She insisted on doing my hair for Dani’s wedding, even though I told her I’d get it done elsewhere because I didn’t want her to waste her precious time on me. Of course, she wouldn’t allow me to win, so I graciously conceded after fighting with her for a few weeks. I made sure to give her plenty of options to get out, but she was just so damn stubborn.
I remember her pulling up to the house in her car and unloading the 2 large Rubbermaid containers that held her precious cutting and styling tools and dyes. Clem ran out and hauled it in for her, after (of course) she stood there arguing with him about it, same old Lea. At this point, her pain had become more pronounced and was beginning to affect her daily life so she wasn’t fighting us as hard anymore.
Glamazon or bust
She was tough and she managed to push through every single day to get all of the things she needed to get done and did so without complaint. When she insisted on doing my hair, I had to cave because she was going to make it a very ugly fight if I hadn’t. I eventually just asked her to cut it for me, that was all, and I told her how much I appreciated her for doing just that.
Once my ass was in the chair however, it was apparent that she wasn’t just going to just cut it, she was going to glamazon the hell out of it. I went to open my mouth to say something, and she popped up in front of me, got nose to nose, whipped out her pointy point making finger, and gave me the look. The look and the finger meant that I needed to shut my mouth and let her do what she wanted or I was going to pay in ways I’d never imagined. So, shut my beak I did.
She did my hair, cut both of my girls’ hair and I think she whipped Clem’s into shape. 3 hours of pure beautification. While waiting for the dye to set, she sat at my table and we shot the shit between her checking her phone to see if Wade needed rescuing from their boys. We had a nice, normal moment that I will remember forever.
Take photos but don’t forget to live that moment too
I hadn’t been taking many photos back then because I wanted to live in those very moments I’d be capturing and not stuck behind a lens. I didn’t feel that the photos I’d be taking would be the ones I’d be looking back upon in the future. I already knew what I saw and I didn’t want the reminder when I looked back.
As it was, my mother, text me to see what I was up to and when I said Lea was there doing our hair, I decided to snap a photo of her sitting and resting at the kitchen table. You know, I love these photos but I also hate them, all at the same time. In this particular photo, she doesn’t look anything like her normal self (pre-cancer) but it’s a photo of her. In the photos I’d taken since her diagnosis, all I see is cancer and yet, I cling to these photos simply because I feel like I have nothing else.
What’s also perplexing is, I find that when I go back to the photos taken years before this nightmare, I feel the same way about them. I love them and I fucking hate them. I don’t know, will that ever change?
Continuing to live was arduous
I tried to feed and water my sister while she was there working and made sure she rested any time she could. I enjoyed the time with her but wished we’d just been sitting and shooting the shit without having a task at hand. As soon as she finished, she had to get back to her house to spell Wade off. It was apparent that the pain was in the beginning stages of amplification.
Despite this, all I can say about her mad hairstyling skills is, damn. The final piece she created for me, was stellar. I absolutely loved what she did and the stylist that was working Dani’s wedding, couldn’t get over her work. As I said before, she was one hell of a talented lady.
Leaving her to go to the wedding was tough. My mind was with her but the rest of me needed to be at the wedding. Since the 4 of us were all part of the wedding party, we were fortunate to get some amazing family photos to cherish (we never seem to have any of these), but I truly wasn’t very present if you know what I mean. Most of that timeframe is just a blur in my mind now.
Burying my head in the sand, yet again
Once we returned home, I threw myself into making a baby quilt for a teacher we all adore and love to pieces who was going on maternity leave for a year. Again, another head in the sand coping mechanism that wasn’t fully necessary at the time. Of course, I made the quilt big enough to last until the child goes to college, so you can imagine the amount of immersion I was doing.
I really hate regret. I struggled with being away from Lea and yet I had difficulty being around her. Talk about a confusing and difficult thing to deal with. I never wanted to monopolize all of her time, but I really wanted and felt like I needed to…how screwed up is that?
I wanted to run away and bury my head in the sand but then again I didn’t. I did try to run away and I can tell you that this has been the most difficult thing I have been dealing with. I doubt I’ll ever forgive myself.
No matter how much you prepare, it’ll never be enough
I remember some of these one last moments better than others and I wonder if I’ll ever remember more down the line. I knew death was coming, and it was the anxiety surrounding the what, when, where, and how that really bothered me. It’s odd how you go from not wanting your loved one to die to switching over to the hope of a merciful, painless, and quick death…preferably in their sleep and peacefully.
As I prepared myself for the inevitable, I’d read articles where people (I think they were medical professionals themselves) sounded off as to what disease was better (as in not as bad) to die from (I can’t remember if they had one disease versus another or what and I know, this sounds morbid but I felt I needed to know), and astonishingly, many said cancer. I don’t know what planet they live on, but nothing that I was seeing would ever have led me to say anything of the sort. Honestly, reading shit like this did nothing for me because of course, nothing played out as I’d read, yet again (someone has to write about reality, hence why my sister asked me to do it).
I almost feel the need to track these people down who said dying from cancer was a better death. Is this a reason why they don’t cure it, it’s not that bad in their eyes? Seriously, I’m convinced they live in some alternate reality or aren’t even human because they’re so disconnected. I know with absolute certainty that this is where I really began to change in regards to quality versus quantity.
I wouldn’t have chosen this procession for anyone. No one. Not even the vilest and inhumane human being deserves a death march such as this let alone having to deal with the shit Lea went through leading up to it. I guess I’ve finally arrived at the point of unveiling the ugly reality no one wishes or wants to discuss.