Once radiation was complete, Lea was to continue taking her Afatinib as prescribed. She had to stop prior to and throughout her radiation treatments but had managed to find 2 interesting studies on drug holidays. Both were very small studies with very few people (maybe 14 in one and 22 in the other…not entirely certain). In the one study I remember, maybe 1 or 2 saw improvement after taking a break from the medication, a handful more had stability and for the rest, nothing changed.
Don’t quote me on any of it because it’s been a while, but she felt that this evidence was compelling enough to try it for herself, with the hope of it making her cancer sensitive to this drug once again. I had no idea that she’d decided not to take it for longer than recommended, but I highly doubt it would’ve changed the course of her disease. I’m not sure how long her holiday was before taking it again but I don’t think it was too long after completing radiation.
Obviously, her oncologist didn’t agree and was adamant about re-starting immediately, but she did bring it to his attention. In my opinion, and in her case, the study was much too small and didn’t reflect her situation. I think these were people whose treatments had stopped working and they felt it no longer necessary to continue and sadly wait for the inevitable. When the patients were still alive after so much time, they decided to reintroduce the medications and report their findings.
Grasping at straws and being proactive
I knew Lea was grasping at straws, we all were, but I don’t know if I would’ve attempted this. She wasn’t on her deathbed and everything was seemingly stable at the time. I agreed with her being proactive, but in regards to the extent, it was ultimately her decision. Sometimes I wasn’t kept in the loop, and I knew it was because Lea didn’t like that I’d often play devil’s advocate to see which side holds water.
February and March were relatively uneventful, in regards to my sister’s health. So much so, that she entered a Taekwondo tournament and even managed to get a gold medal in patterns. She didn’t fare as well in the sparring, but the fact that she was well enough to participate, gives you an idea of where she was at physically. Her scan in March, didn’t really show much of anything new, except it was noted that she may have had postradiation pneumonitis around the same lung as her radiated tumor.
It wasn’t until April that she began having some issues with her back. I remember her attempting to seek out help from the local clinic in town and finally going to get a massage. Anything of this nature, wasn’t of concern to the cancer hospital and they directed Lea to find a physician to deal with this allegedly non-cancer issue. When that didn’t work and my sister really began to go downhill, we knew something was up, and it was most definitely linked to her lung cancer.
Starting to roll down the hill
I think this was the time where I noticed Lea was starting to have a few breathing issues and was having to sleep sitting upright most nights. This contributed to her fatigue immensely and was starting to become quite uncomfortable, if that’s the best way to describe it. Despite doing all she could to help herself, nothing appeared to be working, and the only thing left to do was wait for her next appointment in May.
It was obvious that things weren’t going well once that all started. She wasn’t able to be as active despite her perseverance, and at her next appointment and scan, her oncologist said that she had pleural effusion (accumulation of fluid within the layers of the pleura outside the lung). This wasn’t the news we thought we’d hear and she needed to have a catheter placed to drain it.
Right after her appointment, Clem dropped Lea off at her place and went to work for a couple of hours before arriving back at home for dinner. I stayed home that day, preparing for everyone to descend upon us for some belated birthday celebrations. We were set to have a feast, complete with a whack of keto goodies since Clem and I had jumped onboard with Lea. As I was prepping the last side dish, Lea came through the door looking horribly defeated.
If the shoe doesn’t fit, it doesn’t fit
I always tried to be a cheerleader to keep Lea’s spirits up, so I said we just had to take this one step at a time. They couldn’t see anything in regards to the tumor in her lung because of the effects of the radiation and everything else appeared stable. Was the pleural effusion caused by the radiation? No one would say.
This is something that Lea and I came across in our research, in regards to the possible side effects of radiation therapy. I feel this illustrates that a one size fits all approach in regards to treatment protocols, may in fact harm more than it truly helps. If it’s true that these occurrences aren’t well understood, happen, and have been happening for a while, why have they remained unexplained or why haven’t the treatment courses been altered to possibly avoid this? As I continue to say, no two humans are exactly alike.
Anyone that thinks that one treatment will cure everyone or work for everybody the same, needs to take a moment and reflect upon my previous statement. I don’t believe that there will ever be a single cure for cancer that works for absolutely everyone. I think that each human being is going to require treatments that are as unique as themselves. Just my thought, and maybe that explains a little bit about why I do not believe in standard of care protocols.
Having cancer is an exhausting full time job
As Lea flooded me with the latest on her appointment with her oncologist, I could only listen as I chopped my broccoli and cauliflower. I snuck in a few words of encouragement here and there to try and help make her feel a little bit better but knew she was beyond upset. No one wants to continually be in and out of the hospital and constantly on the phone trying to track people down and schedule appointments. As it was, she had to wait for their call which just amped-up her anxiety even more.
I asked what her oncologist said about the radiation possibly causing this, and as per their usual response (denial or deflection), it was basically shrugged off and then denied that treatment could possibly have caused this. I said that maybe once it’s drained she’d be good to go and that this was just a bump in the road (overly wishful thinking). As per my usual, Clem had fed me information immediately following the appointment, and I got on the horn to look for anything to better understand what could be going on, but we already had a pretty good idea by then. No matter what caused it, we needed to deal with it because she was losing time fast.
Once she was done spewing (that’s what we call the unloading of the day’s emotional baggage), I showed her the strawberry swirl keto cheesecake I’d made especially for her. I knew the news wasn’t going to be what we needed, but I tried to make things better for just one moment by letting her know (in my own way) that she was cared for, loved, appreciated and supported. I know it was only a cheesecake, keto to boot, but for a single moment, I saw a glimmer of hope in her eyes when she thanked me and told me I had a way of making her feel better.
Cancer shouldn’t be a part of life
We had our cancer talk and then left it at that. We attempted to live a very different life, separate from the one that involved cancer. It was decided early on that we couldn’t let the disease take over our lives, as it may have resided within Lea, but it wasn’t the whole of her. It already had enough power over all of us and we weren’t going to allow it to take over.
While we ate dinner, we tried to distract ourselves and talk about anything and everything other than cancer, but the severity of the situation hung heavily in the air. Try as you might, it’s difficult to just let something like that fall by the wayside. It’s weighty and widespread is all I can say.
The evening ended with cheesecake and gifts and after Lea left, I hit the books. She was to wait for a phone call from a thoracic surgeon who was to place a PleurX catheter (to drain her pleural space) and have a new biopsy to see if her cancer had mutated. Everyone was on edge and no one wanted Lea to have to go through this. She was doing so well before, and it was heartbreaking to see things go downhill so fast.
Those few extra pounds could save your life
The next day, she got the call and was told to proceed to a hospital within the large center near where we live. Once there, she was checked in and told that she wasn’t scheduled but would have to wait for an opening between emergencies and previously scheduled surgeries. Yes, you read that correctly, she had to wait, in the hospital in a curtained off holding area, just in case the surgeon was able to fit her in.
So, I bet you’re wondering just how all this went down? Well, she got checked in around noon on the first day and spent the night in the hospital, where she couldn’t eat until about 10 p.m. (no hospital cafeteria is ever open that late). They had to wait that long to know for certain that the surgeon was done for the day.
Lea was waif like to begin with, and any weight loss in her condition should’ve been considered detrimental, but they didn’t care because they expected her to be ready to go at their leisure. After witnessing the drastic effects of cancer in terms of wasting away or cancer literally eating someone alive, I’d say that this is definitely detrimental to someone who has cancer. A few extra pounds goes a long way in my opinion, and in a couple of studies I’d read, those who were able to have those extra pounds, seemed to fare better.
Health isn’t just about weight
I won’t even get into it on the weight debate and medicine. It took many years for the reality to finally sink in, that my quality of life and peace within myself had suffered greatly, after having a weight loss obsession in the name of health. Such a disgusting and life wasting façade.
Eating well, accepting that my body is unique to me, strong, healthy and capable when it has been properly nourished and cared for, despite what some disillusioned medical professional thinks it should look like, has changed my life phenomenally. As far as I’m concerned, they can take their BMI and delusional opinion that women should look like starved super models and shove it up their ass sideways. I’ll even help…and that’s my rant.
The next day, she sat around all day waiting for her turn, with us rotating in to visit again so she wouldn’t be by herself. She was in a cubicle like area, just big enough for a ‘bed’, surrounded by curtains and a bunch of other day ward patients. In fact, the fellow sitting in the bed next to her had been there about 5 days with some kind of bite or something, that they hadn’t done anything for in that time.
Our healthcare system needs a ton of work
Unfortunately, this system tends to see delays in care and honestly, we require more facilities, beds and staff. Shouldn’t our system be able to support the population? All of the major funding cuts to healthcare has led to the culling of all of these essentials, with cash being thrown at it to solve the problem, which only fattens the fat cat’s wallets up at the top.
Lack of money isn’t the entire issue, it’s the irresponsibility of the people who are supposed to be using it wisely. More money doesn’t solve problems, it just creates more corruption. We need to trim the fat, in my opinion.
Anyway, around 10:30 p.m. the second night, when we’d lost all hope for the day, Lea was finally wheeled into surgery. She had been battling back pain and discomfort, and we just wanted to get her out of there and back home so we could care for her properly. Those few days felt like an eternity.
Care means many things
The procedure didn’t take very long and she was out of surgery in no time. It was very late when everyone got home after ensuring Lea was safe and sound, and tucked into bed for the night. We were told she’d be able to come home the next day after one of us sat through their ‘education session’ on how to care for the new hardware they’d installed.
As I will get into in Caelan’s story, caregivers to ill family members have to assume many different roles depending on the needs of their loved one or ones. The roles can vary from basic housekeeping and care, all the way to performing medical care on the daily. For Lea, she was going to need help around the house, care for the kids, care for herself, and of course, care in a medical form to help her drain the pleural effusion when she needed. As you can see, depending on the demographics, more types of care may be needed for younger patients with children, which is exactly the thing we faced.
Is there support for these people? I have no idea, but I do know that all of the pamphlets at the cancer center were all geared toward the elderly. Unfortunately, there are more young people being diagnosed and subsequently treated for cancer then what people think. With that happening, there are more unique challenges regarding care and not just for the ill individual but for their young families as well.
Clem took my mom and went to pick Lea up the next day. I was at home with my kids and, I will honestly say that I am squeamish and wouldn’t have been any help in operating the PleurX catheter that they’d placed in my sister. Clem was an expert at doing these things by this point, especially after helping to care for Caelan, so he was our go to. Besides that, Clem and I were basically going to be filling the role of Lea’s caregivers and one of us had to know what we were doing.
Many of us, just aren’t the medical type
The information session (what a joke) was basically a movie that they made Clem and my mom watch before they discharged Lea. Now, if you’re like me, you’d probably also like a manual to go with it, just in case the shit hits the fan, or you forget the movie entirely. I tend to forget everything when the pressure is on and usually prefer to have something to refer to in the event thereof. No such luck, and as it was, my mother retained nothing.
I don’t know if medical people know this, but not only are some of us squeamish, but we’re also not you and may not be as comfortable in these situations. I don’t know if they forget, or if they just think we’re all cut from the same cloth, but I’m here to say, you’re a special breed. Please don’t belittle or berate us when we feel like we can’t handle some of this shit because dealing with the fact that a loved one is ill, is difficult enough for us to wrap our heads around. As I continue to say, please have some compassion and treat people with the dignity and respect they deserve, life isn’t always rainbows for us all.
If you don’t know what a PleurX catheter is, it’s basically a tube that’s placed into the pleural space, just outside of the lung, and left dangling outside of the body which is used to drain accumulated fluid into their specific and expensive bottles (someone said it was $50-$60/bottle…add that up for one a week and holy shitballs). Sounds like fun, doesn’t it? Nope, there’s no pill to cure pleural effusions, only a procedure. And yes, I am thankful that it allows for less hospital visits, but it’s still a terrifying concept to some of us lay folk.
Adjusting to the new reality
Clem didn’t get home until afternoon. He and I hadn’t had much time to talk, let alone decompress and we desperately needed time to connect as a family. Clem and I do everything together, and my world just doesn’t feel right without him. I was juggling our kids, Lea’s kids and home life while he was juggling work and trying to help Lea get to appointments.
We worried about what was to come and how we were going to deal with it all. I remember wishing that none of this had ever happened. Despite the fact that I’d often wished my life were different in the past, long before Caelan was sick, I found myself longing to go back to before all of the shit happened. The issues we had to deal with then, were nothing in comparison to this.
We knew Lea was going to require a little more care while she recovered, but if you knew Lea, you’d know that she would never rest despite being told to do so. I think she tried to take time to recover but got right back in the saddle as much as she could, once she got home. Scolding or not, she’d just ignore and carry on. She was a hard core mom and no one could tell her what to do.
Enter, the supportive partner
The next day was a Sunday I believe, and my folks decided to head home. Lea seemed to be doing well and my mom and dad had been away for a week and longed for their own bed. Wade decided to have a friend over to play, who brought his kids over for Lea to babysit, in addition to her own 2 kids.
Yes, you read that correctly. In fact, Wade’s friend’s wife, happens to be a cousin and was a close friend of my sister’s. My thoughts were this, they knew what was going on, so why would you dump your 2 young (3 & 5 years old) kids off, early Sunday morning, with someone who basically just had surgery very late on Friday night? Lea felt that Wade should have a day off…yes, those were her words, and someone actually thought that was a good idea…what the fuck?
I didn’t know, otherwise I would’ve told Wade to go fuck himself, but of course Lea knew this and didn’t tell. This was a common occurrence in their relationship. Something drastic would happen to Lea and because Wade had to look after his own kids, Lea felt obligated to give him a day off.
He never once did that for her. And when I say never, I mean never. It wasn’t until she was on her death bed that he finally picked up his socks a bit. Lea was still pitching in to help with the kids, right up until the night before she went into the hospital and then to hospice. I don’t know how she did it, but she did.
Resistant to rest
After Wade’s friend left, Clem, the girls and I went over to put Lea’s garden in. She’d asked me to come and help the week before and I used this moment to make sure she was alright and drop some food off for her. She’d excitedly started some plants with the boys a few weeks prior, and they were long past ready to be planted. I didn’t want her hard work wasted, so over we went.
We insisted on her resting while we worked, but she came out and directed. Hell, she was even down planting a few things too. We worked for the short while it took to get everything planted, including her seeds, before we went back home to let her rest and for us to spend some time recuperating ourselves.
I honestly hoped that Lea would bounce back to her usual old miserable self, but it wasn’t to be. She was in pain and having difficulty dealing with the pleural effusion that continued to accumulate daily. She began to spend more time on her couch in the living room doing armchair parenting while Wade was away at work, than being up and doing absolutely everything and anything every day.
No longer the same
She was the type that would randomly decide to haul everything out of her kitchen and clean it all in one day and do the same to all of the closets while painting her walls and completely re-organizing, while dealing with her kids (who’d be ripping everything apart behind her). She made me tired and I couldn’t keep up. She was very driven and focused, and I often wonder and know, that if things had been different, she would’ve been one hell of a something to be reckoned with.
Not long after that weekend, I began to get up in the mornings, send my family out the door and then run over to Lea’s house to help her with the boys here and there. By the time I’d get there, shortly after 9 a.m., the kids were already fed and she’d be laying on the couch with her heating pad. I’d often do the dishes and any other housework that needed to be done while she tried to kick me out and tell me to go home because she had this all under control. She wasn’t doing well.
Wade was of no help, and often just came home from work and let Lea deal with everything. I’ll never forget the day that I busted my ass cleaning Lea’s house from top to bottom, after dropping her oldest off at school for the afternoon. Lea napped with her youngest and I cleaned all day. After I got home from picking up my kids and Lea’s oldest from school and doing all of the things I usually do at my house and putting my kids to bed, I collapsed on the couch wondering how the hell I was going to keep up with everything.
The blurry moments of my life
The next day, I found Wade’s muddy pants thrown behind the front door and the kitchen full of empty beer cans amongst all the dirty dishes. It looked worse than what I started with the day before and I was pissed. To make matters worse, Wade’s pants stayed for a week before being moved (I wasn’t picking up after him), and the only thing he ever contributed to the household, was stopping for more beer on the way home instead of groceries. This was another dynamic we had to navigate, and honestly, it was the last thing we needed to be putting up with.
As it was, Clem went from helping drain Lea’s pleural effusion maybe twice a week to draining 1 liter (33 fluid oz.) of fluid every single day. That was the maximum amount they were allowed to drain per day and it was evident that things had taken a turn for the worse. Lea found relief from the draining and would get a little pep in her step after but would decline rapidly as it refilled.
I began to have to go over to Lea’s house every single morning to look after her and the boys, and after a couple of weeks, I finally decided to call my mom. It was either that, or I was going to move in with her and Wade because she was pretty well incapacitated. The pain had become too much to manage and she began to look like she was pregnant from the accumulation of the malignant ascites within her abdomen. I can’t recall, but I think the tumor in her liver had begun to grow again as well which added to the girth of her stomach.
As the days went by, Lea continued to fall. We called the oncologist and insisted that he needed to see her as soon as possible, more toward the pain management aspect of her care. Lea didn’t think she needed to be hospitalized, and fought us on the subject any time it crossed our minds and showed on our faces. My mom had basically moved in and was taking care of her and the kids full time.
We weren’t exactly certain as to what was going on, but we knew it wasn’t good. That was confirmed when the oncologist said he was admitting her immediately upon seeing her for himself. We were told that she’d be in for just a couple of days, until they dialed in on what she required for pain management. The room they put her in, said something totally different.
She had been placed in one of the large, quiet rooms where family could stay.
As Clem and I learned from Caelan’s venture through the cancer realm, it was a suite for the dying and their family. The oncologist nor the staff mentioned anything about death, and blatantly denied it when asked. It was then we realized, that reality finally reached out and smacked us in the face. Lea was dying and there was nothing anyone could do about it.