I believe it was a Friday when my folks and I decided to pick up the phone and try to do something…anything for Lea. As it was, she was confined to the couch and in constant, never-ending pain. She couldn’t eat any more than maybe a half cup of food at a time and she slept whenever she could, which was usually 30 or so minutes following a fresh dose of pain medication. Her skin had become almost a yellow-grey tinge and had fresh scratches etched into the delicate tissue from her incessant itchiness.
She basically went from couch to bed and back again each day. Sometimes she’d go for a walk around the kitchen and that’s about as much movement as she could muster unless her kids absolutely needed her. Then, sometimes, she got up to bathe them or do whatever she could to at least have time with them, which appeared to be running out fast.
Lea had always been very receptive to touch and I can remember when she was little and always wanted someone to tickle or rub her back gently. That never changed over the years. Whenever I had the chance to rub her swollen legs or back, I graciously accepted the opportunity. A moment of pampering provided her with the respite she desperately needed to get through the pain she had been experiencing and we were all happy to oblige.
The healing power of touch
I am far from the touchy feel-iest person in the world, but for some reason, it seems to be my go-to when trying to soothe…and I don’t think I’m much of a soothing person either. In extending any kindness that I could to Lea, I learned a great deal about myself. In many ways, I thought I was doing it strictly for her but realized that it was I who may have had more relief from providing this soothing connection instead.
I remember one evening just rubbing her down while she lay on her couch half passed out for at least an hour and how much of a difference it appeared to make in how she was feeling. She always fought me on this, but there was nothing more I wanted than to make her feel better. As it was, I felt like the most useless person in the world, just watching her die and unable to do a thing for her.
Lea struggled with pain management from the go and I realize that this was also difficult for her care team. The drugs messed with her brain and she absolutely hated how it made her feel and because of this, she did fiddle with the dosing because she wanted to be present with her children in the time she had left. The problem was, once her pain became out of control it was very difficult to get it back under control. I won’t lie and say that she was a saint, but I hope you can understand how she was feeling and why she did what she did.
The things we do and the lengths we go for the ones we love
My dad, being one of the most caring people I know, cut Lea’s pills in half whenever she asked, to the detriment of her own comfort. It wasn’t the right thing to do, but what do you do for the ones you care about most in your life? I can’t imagine being my parents and having to go through all of this, but what would you do for your dying child if they asked?
It was around noon when we decided that we needed to do something or we were going to be shit out of luck until after the weekend. We thought that the package full of numbers and places listed within it, was supposed to be used when we needed help, but that proved to be a complete dead end. We thought we would be proactive and potentially avoid waiting in the E.R. for hours on end if we did this, but it didn’t work out this way.
I don’t understand why cancer patients don’t have 24 hours, 7 days a week, 365 (366 in a leap year) days a year access to instant and round-the-clock medical assistance, especially in regards to pain management. Cancer and medical complications, as far as I can tell, couldn’t give a shit if it was a Wednesday at 3 a.m. or a Saturday at noon. Shit seems to happen, most often, long after office hours have ended…of course it does.
Where I’m coming from
In our journey through pediatric cancer, it was insisted upon that we call at any time with many of these things. It’s because of this, that we are frustrated and appalled at how adults living with cancer are treated. It’s no different, the fears are the same and the pain is too. Why should my child and my mother’s child be treated any differently?
As Lea had deteriorated quite rapidly, we were afraid of uncontrollable pain gracing us with its presence, which had already begun. I decided that the only card we could play was perhaps Home Care (yup, you know my love of Home Care) to see if or what they could possibly do if this was to occur as Lea was quite frail and probably wouldn’t do well in an E.R. for hours on end. Their answer was a complete shock to me.
They were of absolutely no use but said we could call an ambulance who could come out and administer pain medication if need be. Tie up an ambulance you say? Are you serious? I know of people who died because an ambulance couldn’t get to them in a timely manner and they were a mere few blocks away. Welcome to Canada…this is not an effective system, and I’m not sorry for saying that.
We became excellent gatherers
The other thing we asked about, was a shower seat. We didn’t know if we should purchase one, or if they had any to rent. The nearest healthcare accessories store was 30 minutes or so away and we were trying to save time by calling these guys because they were in town. Again, we had to figure any and all of these things out for ourselves, so Wade ended up running to the nearest place and purchased a shower chair…that was only ever used once.
As soon as I got off the phone, Clem called me and said that he’d called the cancer hospital and of course, booked an appointment for the following week to see if they could sort out pain management. I believe the first available date was Wednesday. Yes, you read that right, Wednesday.
We weren’t prepared for her pain to change as quickly as it had. We knew it would gradually get worse, but this seemed to gear up by leaps and bounds. We knew that her current medications wouldn’t be of any use soon, possibly losing most of their effectiveness before the weekend was up. For us, after having witnessed her go through this the year before (livers full of cancer don’t process oral pain medication well we discovered), was terrifying due to the anticipation and knowledge as to what was to come.
Attempts to be proactive the second time around caused pissiness
As I said before, trying to be proactive, got us absolutely nowhere. Having no control and being out of control is one thing, but unmanageable pain is completely another. As I mentioned previously, we knew of a young man in his 30’s who died of pancreatic cancer and they had to place him in a coma to control his pain before he died…no one should have to endure that, no one.
At that point, all we could do was hope for the best that Lea would be able to make it until Wednesday. Hope sure wasn’t going to provide pain relief. What a crock of shit.
I remember sitting at my kitchen table completely livid that no one was of any help. It’s like you feel ashamed for having to visit an emergency room any time over a weekend because you’re meant to feel like you’ve done something very wrong in the not being prepared department. They think that seeing a doctor during the week during their regular hours is what you should’ve done but when you try and be prepared, there’s no help to be found the instant you make the discovery, especially when it’s after office hours. It’s not like we had a crystal ball to tell us that we were going to awaken that Friday morning and discover this.
Begging for compassion
I’ve said it before and I’ll say it again, most of us common folk don’t encounter this shit on the daily. Some of us have never been on this path and have no idea what to truly expect and we cannot predict every outcome. If you’re a health care worker, you might possibly have a clue, but the rest of us have no idea. Please, have some compassion and empathy for us if we ask for help and it happens long after office hours…you of all people should know that things happen and usually when you least expect it.
All of these papers with all of these numbers and all of these promises that Lea would be well cared for, all she had to do was ask, was a total façade. I have a bunch of papers within one of the packages Lea had and I can tell you it’s worth less than a piece of used shit paper. Unless you have personal cell phone numbers and personal home addresses of health care providers willing to help, the numbers are useless.
Can’t say we didn’t try. All we could do was sit and laugh at how useless Home Care was once again and know that if it got bad, we’d call an ambulance or better yet, go to the E.R. and perhaps make a stink. We had zero options if shit went sideways over the weekend and could only hold out until Wednesday where they’d just get the ball rolling to figure out how to relieve her pain (don’t be fooled, that takes days, which means more agony for days).
There’s a magic 8 ball for that?
I don’t mean to make people uncomfortable, but this has to be put out there. There is no urgency and you’re scolded for not being proactive. How anyone knows when or how bad their cancer pain is going to increase within days when they’ve never experienced it before, is beyond me. And yet, these people just expect you to know what’s coming and plan accordingly, well in advance.
Wow! Sounds like a great plan. Might I borrow your magic 8 ball then, all-knowing health care person? Mine seems quite vague and tells me absolutely nothing. Yours is obviously much more superior and can predict the future with complete accuracy…if you would kindly point out where I might find one to purchase, I’d be eternally grateful.
As the weekend progressed, Lea continued to decline rapidly. Her friends from out of town came to visit and I wish that I would’ve kicked them out so that I could’ve spent more time with her but that didn’t happen. I need to be a bit more assertive in my needs and I’ve always known that, but it really bit me in the ass here…life lessons can sometimes be very harsh.
Another one last
She managed to make it through the weekend without needing to visit the E.R., this was either a bloody miracle or a testament to her strength. She was still sleeping with both boys and we were worried (this had been on mine and Clem’s mind for a while) if the boys would awaken one morning to find their mother dead beside them. The thought haunted us but no one wanted to take that away from Lea either.
On the Tuesday night before her appointment, my sister bathed her children before putting them to bed for the very last time. She had been passed the point of requiring assistance to bathe herself and could barely get off the couch, but she still bathed her kids and put them to bed. How she managed, we’ll never know.
Early the next morning, Clem went over (like he had been since she got this) and unhooked Lea from her subcutaneous I.V. that she’d had (I can’t even remember when she’d got it but I think it was shortly after immunotherapy because she was severely dehydrated from being sick and unable to consume much of anything) and loaded her into the back seat of her minivan. She barely made it down the stairs from her bedroom to the van waiting outside. She was extremely weak.
We knew this was the last time she’d be in her home
We knew she wouldn’t be coming home with us that day, and even if they tried to send her home, we were prepared to insist that they needed to care for her in the way they swore they would. She was suffering, inhumanely. Both of my parents went with Lea, and Clem went with them as he’d also still been in the loop in regards to her medications that I’d fallen so far behind on.
Wade said he’d be there but up until this point, he had every excuse in the book why he couldn’t previously. He’d used the boys as an excuse this time but I was more than willing to have them while he went to be with his dying partner. I understand that he didn’t feel strong enough and didn’t want to be there, but he should have.
As soon as the nurse saw Lea, the entire days’ worth of scheduled meetings was canceled. Wade showed up about an hour after everything began. Halfway through assessing Lea, they decided that it was either hospitalization or hospice care. Those were her only options.
With being admitted to the hospital, Lea could still try and fight and they would provide an intravenous line and keep her running medically where they could. With hospice care, there was none of that, only her subcutaneous I.V. to provide a bit of fluid and a way to give pain-relieving medications, but they provide comfort measures only. The last one Lea asked about, was euthanasia.
She’d been suffering for so long, that she felt that she was ready and had had enough, but she was informed that the process would take 10 days. When Clem had asked how long she had left (this was a couple of weeks earlier and she wasn’t present), it was explained that they usually judged by how rapid her decline was. If there was a noticeable decline in a month, then months, a decline noticed by the week, she had weeks, decline by the day, then she had days, and so on. I’d been seeing her decline by the day for a while, so I knew she was extremely short on time. I don’t know where a few weeks came from when Clem mentioned it, but I told him that was far from true.
Due to Lea having been in the hospital the year previous to this, she didn’t want the noise and constant bothering from nurses but she still wanted to fight. Her Massive Bio package had been sent and she was just waiting for it to arrive. On the other hand, she also didn’t want to die at home in front of her young sons. Talk about a tough decision.
In regards to hospice care, she first asked if they’d do the blood draw for her Massive Bio kit, but they refused, stating that they were there to provide comfort measures only and blood draws weren’t included in that. So, she asked if she could leave to go to a lab and they said she could, so that’s what she decided upon, hospice care. In the meantime, I think she still wanted euthanasia as an option but even she knew she didn’t have 10 days to wait for a decision.
Her oncologist made a brief appearance and said that he was going to admit her to the hospital while they searched for hospice placement. We’d hoped it would be closer to home, but as there aren’t many beds available nor many hospice facilities period, this wasn’t a priority. Also, he wanted to be sure that if she required any draining, that it’d be done before she left via ambulance.
The week prior to this appointment, Clem and Rae had taken Lea for an ultrasound of her abdomen (Clem and Lea had ultrasounds a few times before this with the same thing being offered, nothing, because she was always just full of shit according to them) because it was bothering her and they’d hoped to be able, at the very least, drain off some of the ascites. They ended up going home after being told that there was nothing to drain (the same bullshit excuse every single time). Her abdomen hadn’t really swelled much more in the week following this appointment, it was approximately the same…and now they were going to drain it?
I thought I’d heard it all
The excuse had always been that she hid fluids well. I don’t know where they got that from because she appeared to be 9 months pregnant…that, to me, isn’t hiding fluids well. Her stomach was rock hard too, there was no mistaking the fact that she’d accumulated a fair amount of ascites for a while but every time they’d ultrasound it, they found no fluid to drain…isn’t that something?
Once Lea made the hard decisions and they had her settled, it all began to sink in. That numbness took over and I was in a rage. Why? Why her?
I couldn’t believe this was happening. I knew we’d get to this place eventually but it was still such a shock. I wanted to believe that she’d pull through like the few others I’d read about who bounced back from their death beds but I knew this wasn’t to be.
There was nothing more we could do
My folks and Clem stayed with Lea until later in the afternoon to ensure she was alright. Lea finally received medications that allowed her to be more comfortable and afford her some much-needed rest. Eventually, a nurse told everyone to go home and get some rest as well and that she’d take good care of Lea (I may sound like a negative Nelly, but we have run into some amazing care providers at times in our journey). Clem and I had some time that evening to talk and to finally allow the emotions to flow and prepare ourselves for what was to come, there was no miracle that was going to happen and we needed to accept reality.
The next morning, they had Lea up early and had drained her abdomen. Guess what? She did have a bunch of fluid in her abdomen!
Wow! She must’ve been magic or perhaps those ultrasound machines just aren’t as accurate as we believe them to be or maybe the dumbasses interpreting them, don’t understand just what the hell they’re looking at. Sorry, not sorry.
Buy them a bloody vowel, allow them to phone a friend, or do something to help them out for fuck sakes because this is pathetic. How did they figure all of this shit out back in the day before ultrasound machines? I think we’re going backward in the smarts department.
Anyone wanna take a guess as to how much they got? They did drain something, even after being told there was nothing. A teachable moment here perhaps…anyone?
3 Liters. Yup, 3. That’s 0.79 US gallons and that ain’t nothing, especially because she was stick thin.
Do you want to know how she felt after all of this was drained? Better, as in much more comfortable. I know that this quickly refills, but after how many weeks of this discomfort (let’s call it for what it really is because medical terminology is out of touch with reality, she was in agony), she finally had comfort.
Why can’t comfort be a part of medicine? Do they not understand the importance of this concept and how it relates to our wellbeing overall? I swear you have to have your head lodged so far up someone else’s ass with your ears plugged full of shit and your eyes too, to not notice this. Explains a lot, thanks, I see the complete disconnect here.
So, finally, early that Thursday morning, they loaded her into an ambulance and sent her to a hospice facility, which luckily, ended up only being 30 minutes away from us. Clem was up and mobile by this time and met Lea there to help get her and her TV set up. My folks were short to follow after picking up a few comfort items and she was officially in hospice care.
She was dying and yet she felt better than she had in weeks
She was in a much better headspace after having all of that fluid removed and having medications that controlled her pain more effectively. She was actually able to eat and drink comfortably as well…finally. Yes, she was exhausted from being drained, but she was feeling way better than she had in weeks.
In hindsight, I wish this had been implemented earlier, why does it take someone throwing in the towel to finally receive comfort care? Is it because they don’t want to foot the bill for treating and for providing comfort? I ask questions and honestly, these should be answered. I pay taxes after all, which goes to pay for this system, and now that I’ve had the full meal deal experience, I’m really not impressed. What’s wrong with wanting better for people?
Lea’s room had a huge window and a spare bed if anyone wanted to stay. I should’ve stayed, I regret that now. Lea never would’ve had it, but I wish I would have. I thought Wade would’ve stayed and should’ve stayed before any of us, but he never did.
Hospice care provided round-the-clock drugs and Lea appeared to be in a much better place. We all took turns going to visit daily, with Clem and I being the last ones to go in and tuck her in for the night. I didn’t want to bombard her because she was mostly sleeping and my folks were there most of the day. The nursing staff said to give Lea breaks and my parents decided to sit in the common area just outside of her room when she needed it.
I think it was the second night that Lea was in there that I picked up on her frustration. We’d usually pop in after dinner, around 7 p.m., and visit for an hour or so and then let her sleep for the night because that’s what she’d do. The problem was, she’d usually be given a round of medication just before we’d get there and she’d be fighting to remain awake so we could visit and that was frustrating to her.
On the way out that evening, we stopped at the nurse’s station (Lea asked us to do this) to see if they could possibly delay the anti-anxiety meds until after we left, so we could possibly visit the next evening because she said it was making her too tired. When we asked about this, the nurse said what drugs they were giving and also said that they don’t cause drowsiness. I can’t remember which anti-anxiety drug it was off the top of my head, but I knew very well (then) what it was and that it did cause drowsiness.
That was kind of alarming that this person told us this. Maybe for some, it doesn’t make them drowsy but Lea had managed to pinpoint that one specifically as the culprit. How do they not know this or why did they tell us this?
As it was, we noticed that although she was no longer in the pain she was previously, she was spending more time sleeping, which meant less eating, drinking, and getting up and moving around. She was still managing to do this at home and the first day in hospice, but as the medication schedule was pushed, she became less active and more bedridden. Just before the time she was due to take them again (she was still pain-free), she’d perk up and eat, drink and use the bathroom while she could. As each day went on, the more drowsy and less active she’d become.
On Saturday night, as per our usual, we went to visit Lea and tuck her in for the night. I’d felt anxious all day and couldn’t wait to go see her that evening after everyone else finally left. If I had known that this would be the last time I’d see her, I know that things would’ve been very different.
The last time I saw her
I remember jumping out of the car and booking it down to her room. I’d made her a sign for her door with my Cricut cutting machine and wanted to stick it on the door ASAP. Anything that I could bring for her made me feel better.
I’d ordered her edible clay (she was craving it) and attempted to make some for her on her first day in hospice but I admit, I’m a shitty clay maker. No matter, she still picked away at it and ate it. It wasn’t appealing to me, but she had a strong desire to eat it no matter how bad I screwed it up, and she was thrilled when I brought it.
I remember getting to her door, knocking quietly, and barely hearing her say to come in. She saw me and made a grimacing face that meant she was upset because they’d just given her her medications despite her asking to hold off on the anti-anxiety one. She was groggy as hell and could barely keep her eyes open. I wasn’t upset, just happy to see her.
The way I felt was weird, to say the least
I told her not to worry about it and sleep. She didn’t have to be awake to entertain me. I settled into the chair next to her and just sat and watched what she had tuned into on the TV. Clem and the girls did the same.
I felt at peace despite not being able to engage with her. I could’ve just sat beside her all night and I wish that I would have. I’d allowed my life at home to get in the way and the exhaustion that I’d been dealing with for the last two and a half years, had finally just become too heavy for me to carry. I was barely making it each day.
The late nights and the shitty sleep I was getting had officially caught up to me. I’d promised to show up in the mornings ahead of everyone else but I never managed to make it. There was no excuse for this but try as I might, I never got there.
Our last moments together
I sat in the chair and went from watching the flat screen on the wall, to watching my peacefully slumbering sister. I was beginning to think that she was going to slip away in her sleep within the next few days and for a moment, I allowed that thought to quell my pain and bring me peace. I had hoped for a merciful and peaceful death and I felt that if life was to gift us one thing before losing her, that that would be it.
We stayed for nearly 2 hours while she slept. We didn’t talk, we were just merely in each other’s presence. I noticed that the food on the swinging table hadn’t been touched at all. Each day there’d been something open and had a bite or 2 taken from it, but not that day.
As we got up to leave, Lea opened her eyes. We told her that we’d be back tomorrow and to get some sleep. We hugged and kissed her and told her we loved her. She knew our love for her and we knew hers.
Walking away for the last time
Just as we were walking out, she looked me right in the eyes and said I love you, I love you more urgently than before and she fell back into a deep sleep. I had kissed her forehead and rubbed her feet gently before following Clem and the girls out of the room. Looking back, the peace I felt when I left, should have clued me in that that was the last time I’d ever see her again.
I remember turning around to quietly close the door as we left, and seeing the beautiful green grass and trees through the huge window in her room, with her feet at the end of her bed. I gently pulled the door closed and down the hallway, we went. On our way out, we met a lady who was going to see her husband who said we looked familiar and asked who we were.
When we said our names, she just shook her head and said she knew us from somewhere. We’d mentioned Caelan had been in the newspaper when she had cancer, but that was all we could offer. We wished her a good night and climbed into our vehicle where I turned to look at Clem and told him that I felt at peace. It was weird.
A long night I’ll never forget
My folks had come to visit after we’d returned. They were staying in our holiday trailer that was parked in our yard because DJ and Rae were staying with Wade and the boys. After another late night, I fell into bed and into a dead sleep around 2 a.m. or so. It wasn’t long after that that Caelan came to our room and declared that she was feeling horrible and wanted to throw up.
As she is emetophobic (I am as well…not fun) since going through chemo, I was up in a flash and giving her Gravol (Dimenhydrinate) to help ease her nausea as quickly as I could. It was around 3:30 in the morning and I was exhausted. I wondered if it was nerves or if she’d picked something up.
I got a bucket and crawled into her bed with her to try and help calm her down. I barely slept because of the adrenaline coursing throughout my body. This interesting phenomenon, kicked into overdrive when Caelan had cancer and I still experience it to this day.
A phone ringing, a doorbell, a kid coming to my bedside feeling sick in the middle of the night, all get my heart pounding and throws me into fight or flight mode. I don’t know if this is PTSD but I can’t even begin to tell you how difficult it is to bring myself back from jumping out of my own skin. That’s probably why the ringer on my phone is usually off or tuned down all the time too, I just can’t handle it.
I tried to get some kind of sleep but I just couldn’t get myself to calm down. I was lying in Caelan’s bed, curled up beside her, thinking about Lea and our visit the night before, I was sad. It wasn’t long before I finally threw in the towel and got up to make myself a cup of coffee.
My mom came through my door around 10:30 or so. We’d only been locking the door handle and not the deadbolt so that she and my dad could get into the house whenever they needed. Not long after Mom arrived, she got a text from Wade. He and one of the boys had gone to see Lea and apparently, according to him, she wasn’t having a good day.
Something was happening
As his communication skills in regards to texting are a little lacking, none of us understood what this meant. My mom instantly knew she needed to go, so she and Dad got ready and left in a hurry. I said I didn’t know if I should go because of Caelan, if it was a stomach bug I didn’t want to bring it into the facility. I didn’t know what to do.
Mom said she’d call and let me know once she spoke to a nurse and told me to wait until she got there and we’d figure something out. Needless to say, I anxiously waited with my phone in hand. Caelan eventually got up but still wasn’t feeling well.
Once I got her settled, I began pacing the house and bugging Clem as to what I should do. I wanted to be with Lea and felt like I needed to go, but I didn’t feel like it was a smart idea to bring in a stomach bug on the off chance Lea or someone else got it. On top of that, my little one didn’t want me to leave her. I felt very torn.
I hate waiting on the sidelines
I text my mom an hour or so after she’d left and wasn’t getting much of a response. Eventually, she texts me back and just said Lea was having a rough day and that she’d text after discussing with a nurse about what I should do and when I should go if I could. Caelan never vomited, but she really wasn’t feeling well and I’d been in close proximity all night…what do you do?
The hours dragged on and every time I’d text my mom, I would get vague, short messages back, long after the fact. I was constantly asking what I should do or when I should go but I wasn’t really getting any clear answers. It was shortly after dinner and I was beyond antsy, so I text and said Clem and I were coming, regardless of anything. I think my mom still said to wait.
Lea had needed more pain medication and she was waiting to see if anything would work to get her settled enough for a visit. I was patient and okay with that. Little did I know what was truly happening.
I eventually got a text from my mom to get over there because she didn’t think Lea was going to have much longer. We got the girls together and told them that we were heading out. Caelan did not want me to go and Clem offered to stay back but I needed him. We finally asked the girls to stay together (Lola was old enough to stay home alone with Caelan and if anything came up, they had the neighbors) as we wouldn’t be long and proceeded to load ourselves into the car.
Just as we were pulling out of the driveway, my mom texts me, Lea is gone. I told Clem to stop the car and my phone rang, it was my mom. She said that if we wanted to see Lea one last time, we should come, but otherwise, she was gone.
I couldn’t believe it. I was numb. My beautiful sister was gone.