Please accept my sincerest apologies. I was not in top form last week and hence missed my usual posting. I know it’s a tad bit late, but better late than never is what I always say!
She knew she was one in a million.
In every way she was, just not in the way she’d hoped.
In one breath, Lea’s type of lung cancer had a survival advantage and in the same breath, it could also be said that it didn’t. Makes sense, doesn’t it? I think it boils down to the very human it affects.
Half full, half empty, no glass?
It’s interesting how each of us perceives the glass as half full or half empty. It all depends on how we view our own unique situations and how we make the odds fit into our stories. Despite everything, hope sometimes plays an important role in our perception and often influences those around us. Sadly, hope doesn’t always provide the positive outcome we all wish for.
Youth was on Lea’s side allegedly. In some studies, the liver metastases didn’t seem to sway her odds…depending on what you read or how you interpreted the carefully cherry picked and framed data. Fascinating how vast the facts are, is all I can say.
Scientific data is all over the map in medicine. In all honesty, they can present to you what they want you to see, when in fact, it couldn’t be further from the truth. It’s in that same reasoning, you can apply it how you see fit to your own story.
Despite the fact that lung cancer doesn’t have a positive outcome for most, there are a few that beat the odds, but it’s definitely not the majority. No matter what factors or situations the data proposes to be of positive value, doesn’t seem to matter all that much when death is usually inevitable for the majority. Treatable for a time, doesn’t always translate into treatable for a healthy, long life, full of quality. Again, it all depends on how you see it and how you apply it.
She was a little over a month away from turning 34 years old and this was the hand she was dealt. 2 young children, the youngest just having turned one 2 months prior and still breastfeeding, both still relying heavily on their mother. These 2 little boys needed their mother but death doesn’t care.
After Lea finally had a firm diagnosis of EGFR Exon 19 Deletion lung cancer, stage 4 and a treatment plan from an oncologist, her life was left to fate. She didn’t want to know what her predicted timeline would be, but if you’ve done any reading, the odds aren’t great. As it is, people forget that we all have expiration dates of unknown timelines and some of us end up with significantly shorter ones.
Lea was going to beat this. She wasn’t going to be a statistic on the shit end of the stick. She was determined to do everything she could to live long enough to see her kids graduate high school and beyond, if possible. She was determined to be that one in a million that lived past the 5 year mark that’s often used as an endpoint of sorts for cancer statistics.
We all think we’ll be that one in a million. In fact, I think that’s very human of us of to take the positive side of the one in a million statistic. I think that secretly, we’re hardwired with optimism and hope. If you have hope and you’re positive, there’s always a chance, right?
Optimistically one in a million
If you had the same diagnosis, I’m certain that you would say the same thing and feel the same way. You’re going to fight for your life in any and every way that you can. We’re no quitters (that said, I have immense respect for those who understand their realities, the ones who stop or immediately accept what is, isn’t quitting in my book). I think what some miss in making that difficult decision, is wisdom.
So, she was that one in a million in winning the cancer lottery, but she also wanted to be that one in a million who beat it. One in a million, 4 words strung together with such a vast meaning, blows my mind to even consider the possibilities. Personally, I prefer the one in a million on the positive side of that and not the negative, don’t you?
After witnessing my sister’s journey, I’m sure I’d immediately be thinking the same. However, in that same moment I feel like I would also have to accept my reality and based on what I’ve witnessed, may not even engage depending on the situation. I’m no quitter, far from it, but I wonder a great many things about these treatments and if there’s ever going to be a long run of good quality in the future.
Cancer treatments are like paper airplanes
I know that the answers I seek will never be and that leaves me with insufficient evidence to willingly and happily accept that path. The data never seems to change or be updated in a timely manner, nor corresponding with real life outcomes it seems. I’ve boiled it down to the fact that the new and improved stuff takes the front seat and that what happened previously, is simply dumped in the trash and distracted from.
To me, that knowledge has immense value and I feel like it builds up to better outcomes. Not only that, as I’ve said before, we’re all vastly different and a wide variety of treatments should be available for patients. What works for one may not work for another.
I feel like my experience with these treatments are similar to watching a hyped up paper airplane being thrown into the air with great anticipation and hope for excellence. With our collective breath held, the flight started off well but gradually began to change it’s path, eventually careening off course and free falling into a horrifying downward spiral. We got lucky once, and the airplane managed to gain a little bit of control and continued to cruise for a short distance at a low altitude before making a horrendous crash landing. We need to make a few more paper airplanes I think.
It’s hard to accept reality
Walking away would be far from anything like me, but after Lea died, I realized what is really important. I understand the realities that the positive, glowing data, usually from pharmaceutical companies and regurgitated by oncologists, isn’t always reflected in reality. The end result is usually the same, but the journey there seems to vary significantly. In seeing this, I’ve realized what I truly value in life.
It’s personal, and it isn’t anyone else’s decision but my own. The scary part about realizing these things now, is that this decision may no longer be a right very soon. You see, I do value quantity in regards to life, but I feel what’s most important for me now, is the quality of it.
Each of us has a different idea of what this is, that’s what makes us unique. What’s troubling is, the behavior of others who aren’t in agreement or are opposed. Whatever happened to that’s not for anyone else to decide but you?
Lea was extremely hesitant about taking the Afatinib she was prescribed. I believe she was taking 40 mg orally once a day, if anyone was wondering. At the time, this drug was considered ground breaking but came with quite a few harsh side effects, managed medically where it could. In comparison to traditional chemotherapy it was superior, and it was…for a limited time.
Bearing witness to a life altered
Lea had to wean her youngest before taking it, and hadn’t even begun until she was told to start taking the medication immediately. I had given her a heads up a couple of weeks previous to this, to help slowly transition her little one, but she decided not to until she had to. That was extremely difficult for her and I’m sure any mother would understand the agony in having to make this decision.
Weaning children isn’t always an easy process and I kept assuring her not to feel bad about having to do it with all of us under the same roof. I knew it wasn’t going to be quiet and peaceful and prepared my kids accordingly. It was what it was, and it had to be done sadly.
I don’t live in a large, glamorous mansion, so we had 2 families of 4 residing in a 3 bedroom, 2 bathroom, 1,400 square foot home, with an unfinished basement during this time. There was nowhere to run, and nowhere to hide and my heart hurt for Lea and Wade. There just wasn’t any privacy for anyone.
Clem and I tried desperately to give them time to talk about what was happening as a couple, but it was hard when we were all tripping over one another with Lea’s 2 kids joined at her hip. Her youngest one couldn’t be separated from her and he even found Lea’s trips to the bathroom too much. He’d often hang around outside the door crying if it was too long, and no one else could do a thing about it.
Crying in the closet, it’s not just for kids
Had cancer not played a role, and it was a much happier occasion, I’m sure many fond memories would’ve been associated with this time. As it was, I’d often retreat to my closet to sit on the floor and cry my eyes out for my sister whenever I became too overwhelmed. That was all I could do to get myself back on my feet and out there to help and try to deal with the insanity that she was having to deal with.
I remember retreating to the closet one afternoon with my phone in hand. It’s not a moment I’m proud of, but I desperately needed my mom. It just goes to show that no matter how old or independent we are, we still need that someone sometimes and for many of us who are lucky enough, it’s our moms.
Lea and Wade needed a place of their own and the only way we were going to be able to do that was with my parent’s help. They knew and were attempting to try and get everything in line, but on that particular day I was so low from watching Lea flounder, that I had to call my mom while I was sitting in my closet. Ugh, I remember sitting on the floor trying not to sound like I was crying (and I’m not usually a crier…just FYI) and just spewing to my mom as quietly as I could while Lea was putting her youngest down for a nap. Not a fond memory.
I wasn’t ready. Honestly, I’d never be ready, not in this life time. It was just too close to the last battle I had to fight and my gas tank was empty so to speak.
Sucking it up
Didn’t life understand that? I was beyond exhausted in every single way, and yet, there wasn’t a single thing I could do about it. Life can be so cruel.
Despite all of this, it wasn’t about me. This was about Lea. I knew I needed to suck it up in order to move forward, but I have to tell you, it wasn’t easy.
I remember Clem and I making the decision to pack the girls up for the weekend, after Lea had found out what she was dealing with, to head over and stay with his sister. We knew they needed time to regroup and talk about what was to come. Having us around, added to their anxiety while attempting to deal with this anomaly. I was nervous about leaving them, but I knew they desperately needed the time.
Medicine is risky, where’s my scale to weigh it out?
I was consumed with anxiety all weekend, my thoughts persisting about how my sister felt and what she was thinking. She didn’t want to take the Afatinib and stop breastfeeding, but she knew she had no choice. The side effects and possibilities were terrifying too and I agonized over her having to make this decision.
I will say that we were thankful that she didn’t have to go straight to traditional chemotherapy and that yes, this form of therapy was much more patient friendly, but it still came with great risk. When you’re young and healthy, assessing these risks is important because treatment is often life altering and not always in a good way. The reason Lea considered it seriously is because it had a lot to do with the quality of life she was about to live.
How that consideration is viewed as being insane is beyond me. I think there are far too many who don’t think about what could happen when taking new medications. If you’re like me, you could be that less than 1% who have the unlisted or bizarre reactions.
You know? The ones that aren’t acknowledged within the exceptionally tiny writing on the little piece of paper declaring all of things you could possibly experience, nestled in the bottom of the box the medication came in. Maybe I’m the only one?
A bird’s-eye view of being young and sick
I get it. She had cancer and having treatment is better than not having treatment, but when you’re young with children, your state of health is important. Young people who are incapacitated by disease or it’s very treatment who have children, bills and jobs, face many obstacles not considered by many and there is little to no support outside of friends and family.
The common thought that young people don’t often get sick, is getting in the way of the creation of viable support measures outside of those friends and family. We need to do more, desperately. This should be an integral part of support within the realm of treatment (in my opinion) and not covered by some expensive insurance policy…I’m going to stop there.
To say that it’s a juggle, is an understatement. I understand that someone who is older also has challenges, but often, young families have children to take care of on top of the ill family member. I will write all about care giving at a later point but just wanted you to understand what Lea had to consider when it came down to it all.
Consideration with thought
She couldn’t just blindly swallow a pill and that was that. I’m just going to say it, that would be insane. There were too many what ifs that she felt that she needed to prepare for and I couldn’t blame her in the least. Time wasn’t on her side but she had to take care of her kids before she felt like she could help herself.
Luckily, none of the scary situations happened with this course of treatment, as you will read, but she did have some scares. Also, it did cause some unpleasant side effects, which limited Lea, but she did manage. We are grateful that she did have these options but make no mistake, things can still happen. Some of the things that can and do happen, did make life difficult for her to manage at times.
By the time Clem, the girls and I returned home, Lea had already started to wean her youngest. I remember giving Lea and Wade our bedroom before we left, leaving Clem and I in the basement in our thrown together gypsy love suite. Nothing glamorous, just a bed in our wide open, frigid, dark basement (we used to pin old sheets around the spare bed years ago, making is a suite of sorts).
Life isn’t fair
I remember lying in bed that night, listening to her youngest crying his eyes out around 2 a.m. as Lea tried to comfort him as best she could. She was trying to keep him quiet so as not to disturb the rest of us because Clem had to work and the girls both had school in the morning. It was hard to hear.
I wanted to go up and help but knew that I could do nothing. She was scared, frustrated, sad and mad and she fought with herself to not take it out on anyone else. I could hear her trying to deal with her young son by herself in the dark and I know that that was one of the moments that really broke me as a human being.
I hated life. Why did she have to deal with this shit? What atrocity did she commit to deserve this punishment?
As Clem slept beside me, I angrily bawled my eyes out in the dark. I should’ve recorded the hours of her trying to soothe him. It’s moments like this that capture the injustice and cruelty that life can hand out unsuspectingly.
Searching for motivation
I’d love to use that to motivate others to do better but it wouldn’t matter. It would just torture me. What will it take for others to understand that what is being done for people like my sister, isn’t enough?
Do we all need to witness or suffer these horrors to finally get it? The things that others in this world take for granted because they are blind to reality or have no idea nor understanding, shouldn’t be dictating to others and accepting what is because it’s a crock of shit. There are many things out there that can kill you, and the journey down the narrowing hallway that many experience with cancer and the like, isn’t the answer.
If only they’d listen. They may be spared from living these atrocities somewhere down the line one day. What you see in the data, isn’t what you think it is in reality.
Who will be the one in a million? Will it be you one day…me? Suzanne Collins nailed it in her book The Hunger games with the famous quote, “May the odds be ever in your favor“. This is one of the most deadly accurate lines ever to be created in humanity and I wish this for all of us.