She has been dominating my every thought as of late. I feel like it’s because this time of year sends me the haunting flashbacks of the moments that changed my life forever. It just feels like she’s everywhere in my head these past few days. I have moments where she’s still present, fresh in my mind and not just at the forefront so much. Other times, she’s the epicenter. My thoughts automatically turn to her whenever I am not working, and I find that I am constantly trying to keep myself busy.
It would’ve been three years ago, around this time, that she and I were truly immersed in the adult cancer world. I had only been out of Caelan’s ordeal maybe 3 months, and here I was, riding shotgun with my sister in the battle for her life. She was so brave. ‘Why her?’, is my daily mantra.
I’ve been replaying the memory of the morning she and I took off in the very wee hours to get to her first appointment at the cancer hospital in the city. We had about an hour’s drive, so Lea and I got up and left before the usual school grind commenced at my house. I think she and her spouse, Wade, arrived with the kids over the weekend, before her appointment. And, if I remember correctly, her kids were already up with her that morning.
For some reason, I remember driving in the snow, but that could’ve been the second day because we were there for two days in a row. At this point, she’d heard from her doctor back at home that she had stage 4 lung cancer. I’m uncertain if she’d had any more information, other than that. Obviously, stage 4 was metastatic, and I can’t remember if she knew where it all had ‘spread’ at that time.
Summer 2016, and so it begins…
A few months prior, during the summer, she had mentioned that it felt like she’d pulled a muscle in her chest. She attributed it to pulling out a stuck ATV. This seems to have preceded the nagging cough and the blood tinged mucous that followed. She was 33 years old, and her youngest child wasn’t even one yet. She appeared to be just another healthy busy young mom, not unlike any other you’d encounter in your travels. She was a helicopter parent, who was constantly right on her kids, every second. Watching her was actually exhausting! I don’t know how she did it! She continued caring for her children when she could, right up until the night before she went into hospice, 4 days before her death.
Truth be told, she had put off appointments here and there because she felt like she had either improved, or felt that the symptoms weren’t alarming enough to be investigated. I think many of us have had encounters with individuals of the medical faction who’ve ridiculed us for a visit at some point in our lives, and I also think this was at play. Previous experience, dictates future decisions. Also, in hindsight, she had some fatigue, but it never seemed to show. She commented once, that she thought that that’s how we were supposed to feel as moms and to just get over it and not complain. Lea wasn’t a complainer, at all. If she did mention anything, it was usually significant.
I keep going back beyond all of these symptoms and wonder if she had cancer, but didn’t know it, way back before any of this. At one point, she was being tested for Rheumatoid Arthritis because she had such bad body pain, stiffness and exhaustion years earlier. It was blamed on her job as a stylist, standing and working for hours on end, rarely taking time off. There was also the ‘gout’ episode on her one big toe and her blue toes and fingers from ‘Reynaud’s Phenomenon’ as well. Were these possible indicators years before? Cancer is a sinister character. It’s unpredictable nature as to when or if it raises its ugly head and how quickly, slowly or deadly it tends to be, varies in every unique case. I guess the answers I seek will never be known.
It’s all a hazy fog, as she wasn’t telling me any of this and I feel horrible I didn’t know. I feel she didn’t indulge me due to everything else that had been going on in my life. I also think she felt she was doing me a kindness by not burdening me, but I’ll never know. That’s just how she was, so I can only assume. I hope she knew that she never burdened me and that I cared about her so much, that her bumps in the road were mine as well.
The saying is very true, when one member of your family has cancer, you all have cancer. I was right there with her, feeling the fear, despair, and the hopelessness. I swear I had cancer too, same as when Caelan went through it. Trying to shake that feeling has been very difficult for me, but it has lead me to choose a different and positive path in my life. A whole list of other things come with this mindset, and I just want to say that it isn’t always a good thing. I have to remind myself sometimes that I am not sick, and shouldn’t be worrying about it, unless that time comes.
The hooves belonged to zebras, not horses
Lea had a round of antibiotics for the cough, and I think she said she felt improvement, but either the symptoms returned, or hadn’t let up. She eventually had an x-ray, which prompted booking a CT scan at a bigger hospital two and a half hours away. My parents ended up taking Lea to her scan; from which, an immediate bronchoscopy for biopsy was scheduled immediately after. My mom can easily recount the moment of dread she experienced, while she and Lea waited, prior to the procedure. Seeing the images of my sister’s lungs, spotted with cancer, will haunt her for the rest of her life.
Needless to say, it was a horrible drive home. They almost kept Lea overnight, and probably should have. They punted her before she was really awake (she ended up being medicated more heavily than expected during the biopsy) because it was closing time. I guess my parents struggled to get her to their vehicle afterwards. They did the best they could and of course, she got sick after eating (why Arby’s mom and dad?) and was continually passing out the whole two and a half hour ride home. They worried about the blood she was bringing up with her stomach contents and the unanswered questions they’d asked the specialist after he’d done the procedure. The uncertainty of her future, weighed heavily on their minds. This is a form of torture, and it’s not just my opinion, this is a fact.
Once back in town, my mom and dad tried to keep her at their house to sleep off the drugs, with supervision. It was very late in the evening, but Lea in her stubbornness, insisted they take her home so she could take care of her kids. Keep in mind, her eldest was 4 and the youngest had only just turned one by that the time. Lea was overly adamant about taking care of her children and letting no one help her. That, and her spouse wasn’t overly keen on helping out either. I think that relationships play a part in the vast array of factors contributing to the outcome of a patient’s survival. If you are in a relationship with someone who doesn’t give one iota of shit about you and isn’t willing to be there for you in any capacity, positive outcomes may evade you in the long run. Just a thought.
Anyway, Lea was supposed to go back to see this specialist about her results, but she asked if the family doctor she had been seeing in town, could give them to her. Thankfully, he was more than willing, and agreed that being on the road in a bad mental/emotional state, wasn’t a great idea. HINT HINT medical faction….you may not want any of us driving home in a state of shock after getting bad news. Sorry, but I had to say something. This area, needs immediate consideration on a case by case basis perhaps. I understand your reasoning behind it, but new or flexible methods unique to your patient should be considered.
She finally received a call from her family doctor a short time later. He had been watching and waiting for her results. It was honestly very considerate of him to be on top of things for her. I’ve heard far too many stories of clinics mishandling things here in Canada, and I shudder at the thought of what might’ve been for Lea. He made sure to follow up personally after the x-ray. I think he asked her to come and see him as soon as her results were in the system. She went by herself, and learned that she had stage 4 lung cancer. She asked previously to be tested for a number of other things, but they had all come back negative. This was around Halloween 2016, and my head was still in full denial mode because I just couldn’t handle any more.
Fast forward to about a week and a bit into November (maybe 2-3 weeks after the news), and she and I are on the way to the institution that is death. We rarely spoke over the weekend about the dismal diagnosis, but had moments of spit balling prior to the appointment. We were still in denial, that it had to be Sarcoidosis or maybe something else. She’d smoked maybe a total of 7 years combined, not all at one time. She was so young. How could this have happened? We had no idea the extent, well I didn’t anyway, and we were about to be blown away.
Got lungs? You can get lung cancer, smoking or not. Stigma quashed.