It was a good run…while it lasted.
Once the holidays had ended, Lea’s first scan since starting the Afatinib became the much anticipated, yet nerve wracking event to take center stage in all of our lives. We were collectively holding our breath until we had results in hand. We had plenty of hope, but the anxiety that many refer to as scanxiety, made us go back and forth on what we predicted may come.
Scanxiety is a real thing
That kind of anxiety isn’t fun to deal with. The mind takes you places that you’ve never imagined and makes the grandiose nightmares you drum up, feel like they could become a reality at any possible moment. Believe me, I came up with some rather interesting scenarios.
My sister was obviously nervous, but if I recall, she was feeling fairly well despite dealing with the unpleasant side effects of her medication. She was still as busy as ever chasing her young kids around and getting herself settled into her new place. The actions didn’t fit the story line and it was hard to wrap my head around the fact that she had cancer at times.
Kind of makes one paranoid. She appeared healthy and yet she had cancer. I swear, if you’ve never had any sort of health anxiety prior to something like this, you begin to question and wonder.
Life trajectory changes in an instant
Life ends up revolving around the tests and scans that provide the updates as to how treatment is proceeding when you have cancer. Everything revolves around those dates, and we’d often hold off on planning anything surrounding them. All of the different things going on in our life, were evaluated and considered by how’d they’d be affected by our emotional state if we had good or bad news.
I agree, that’s not the way life should be lived but that was our reality. I used to enjoy spontaneity combined with planned events to look forward to, but after living around a precise and very scheduled life, I completely lost my chutzpah. We were living around Lea’s cancer appointments and trying to live within the life we had with our own family and it was hectic and exhausting. Living 2 separate lives was a juggle and attempting to keep up a happy looking appearance for other’s sake was a total farce.
The joy in the usual had dissipated with Caelan’s treatment but we did make every attempt to revive its refreshing joie de vivre whenever we could. In reality, we still struggle with that, always awaiting a time for the other shoe to fall. Life just isn’t the same.
Our new normal began long before covid
The day of the scan arrived, and I remember Clem taking Lea. I had taken Lea to the first few appointments prior to (I remember the lymph node biopsy they did of her neck before it all got started), but I think I stayed back this time. Clem can work on the road, but it’s difficult when the kids are around, so I was usually the go to for the kids.
Our routine was to have the scan done one week, with the results to follow in the next. Lea usually had a CT scan with contrast and it was usually done every 3 months or so. The very first one after starting treatment was at the end of December or early January 2017.
We had no idea what to expect from this scan but we were all hoping for her tumors to have shrunk. Optimistically, Lea hoped they’d shrunk to the point of NED (no evidence of disease). Wishful thinking, but we encouraged her to aim for the stars. There was always hope for her to be that one in a million.
Preparing for the worst, hoping for the best
Lea was adamant about the mind/body connection and that being positive goes a long way. It’s the same as how she treated others, they always had the benefit of the doubt with her. Yes, she did get bit in the ass by a few who took advantage, but she always tried to find the good in people and amplify it for all to see. The world doesn’t realize what it’s lost.
Scan day came and went but the jitters intensified with waiting for the results. Lea and I would go back and forth on what was seen. One day we’d be preparing for the worst and many other days, we were fervent believers that she’d been feeling her tumors twitch within her body while shrinking into nonexistence.
The extremes were vast and as I’ve said before, the unknown seemed to be the gasoline to whatever fire the mind entertained in a moment. For us, the mind was hosting a campfire full of fear, and the unknown wasn’t really helping us stay positive at times. No matter, the days continued to pull us closer to results day and I think we all lost sleep.
We’ll take good news any day
None of us were expecting to hear good things that day, but thank goodness for good news. As luck would have it, Lea’s scan revealed a significant decrease in tumor size. I don’t have exact numbers in front of me, but I think her lung and liver tumors shrunk by half and the other smaller tumors in her kidneys were non-existent.
A miracle? Perhaps. We were ecstatic.
The oncologist? I believe he was quite pleased and if I recall, this was the best response he’d seen thus far. Promising, right?
This wave of good fortune was exactly what we all needed to pop us back up to the surface after being submerged by the undertow that was cancer. We had renewed hope and faith that Lea would be around for a few more years to come if the treatments continued to roll out and be just as promising. As I’d read, the long haulers, as I would refer to them as, would continually hitchhike from treatment to treatment option as each one failed.
I’d often pitch that scenario when Lea felt down about her prognosis, and it seemed to keep her positive during the hard times. I feel guilty about that now. It was all a lie.
Miracles, luck, good fortune and juju
As time passed us by, the side effects thankfully became easier to manage and it almost felt like life as usual. The next scan in March held amazing news, yet again and her tumors had shrunk by half, just as they had previously. I think the tumor in her lung was around 8- 10 cm (3-4 inches approximately) and the tumor in her liver was around 4 cm (1.5 inches) before starting treatment.
Nearly 4 and a half months of treatment later, the lung tumor was down to around 2 cm (less than an inch) and the liver was under 1 cm (under a half inch). I’d say that was amazing progress. Unfortunately, I admit, it encouraged us to become complacent and perhaps a little too comfortable. I now refer to this time as the honeymoon phase during Lea’s treatment with Afatinib.
Lea was feeling well enough that she even started to practice Taekwondo with Clem, Lola and Caelan. We enjoyed weekend dinners, shopping trips and impromptu visits with Lea and her family often. As sister’s who’d been living different lives far apart for many years, we made up for lost time and reconnected our sisterly bond.
Don’t even look at the chickens
You know that saying about not counting your chickens too soon? Well…I think we all began to have that thought in our minds because Lea was doing so phenomenally well that she might actually be around for a while. Wishful thinking led us to that four letter word that I know I sometimes see as a curse word…hope.
We all enjoyed the summer and my family and I felt a little more like we had a normal life. We were starting to allow ourselves to fall into recovery mode, to process what we had gone through and attempt to deal with what had occurred. Having to put off dealing with all of those things wasn’t good for any of us.
The thing is, cancer is unpredictable. Any disease can be unpredictable. We may have ideas of how things progress, but no two people are the same, and experiences do tend to vary.
It’s not like any of us expected the good news to continue. We’d always hoped, but in the back of our minds, we all knew that there would be a time that the good would end. I guess I just didn’t expect it that soon.
Good things can and do end eventually
By the time September hit, it was time for another scan. By now, Lea was feeling fairly positive about how treatment was going, and even seemed optimistic about beating her cancer. She’d often say that she was giving it a year before evicting it entirely from her body. I loved her ferocity and admired her bravery.
Her optimism was contagious and it fueled our hope exponentially. We all wanted her to beat the odds, badly. I think Lea had finally asked her oncologist what her potential prognosis in terms of life expectancy could possibly be at her previous follow up appointment. He said, at that time, she could be at the tail end of the curve and estimated she could live with her lung cancer anywhere from 4 to 6 years possibly.
If you knew Lea, she was happy to hear that but obviously wanted to push to do better than that. That was a challenge to her, and she wasn’t one to back down. Once she was finally into treatment, she had started to read and research along with me about the different treatments options and mutations that develop along the way. We wanted to be prepared, just in case.
The buck begins to slow here
September’s news wasn’t exactly what we thought it would be. Far from it. It was then that we all realized that no matter how positive we were, how diligent one may be or how positive the journey begins, things can all change in an instant and in unexpected ways. This is life.
Lea’s lung tumor had begun growing despite treatment. We knew that the average time to treatment failure with Afatinib could start at any time, but for some reason 9 months sticks out to me. Lea had started in November of 2016 and the tumor began showing signs of growth in her September 2017 scans.
I think it was decided that she would have another scan, just to see how much growth was occurring before jumping into another form of treatment. Lea was still doing well and didn’t have any signs that things were going awry. She had been told that if they needed to, they could radiate that tumor and continue taking the Afatinib when it came down to it.
Treatments, tightropes and safety nets
I’m not certain if her future line of treatment had been approved for full use yet. At this time, it felt like Lea was walking on a tightrope. She had to leave the safety of the ledge when she started her treatment and just hope that there would be a safety net underneath, to catch her if she fell. As the genetic mutations that occur with this kind of lung cancer are discovered, you’d think that new targeted therapy treatments would roll right out with it…so the health and pharmaceutical companies would have you think. In reality, where we live, it sure the hell doesn’t.
Lea certainly didn’t want to pursue radiation therapy. When dealing with lung cancer though, options are limited. Radiation felt just as extreme as chemotherapy to her and I can’t say I blamed her in the least for harboring those feelings.
I was reading about the effects of radiation on the body and the possible implications down the line. I was astounded at what I found. One particular article I’d read stuck out in my mind about how many years after being treated with radiation what could happen and in any place in the body. One cannot deny that there are still many unknowns in regards to these treatments.
A memorable birthday for the wrong reason
In December, a day after my sister’s 35th birthday, she got the news that her most recent scan had indicated that her tumor had grown, yet again. Her option was to radiate it in the hopes of slowing it down or stopping it completely. The Afatinib was still keeping her liver tumor in check, so they felt that she should keep going with that.
Lea wasn’t thrilled, but this was when she decided that she wasn’t going to sit and twiddle her thumbs anymore and begin trying other methods to improve her odds. She felt that by throwing a little more at it, it might give her an edge. This gave her the feeling of having some sort of control over her disease, but I must admit, sometimes it was hard to watch.
Prior to Christmas that year, Lea was prepped for her radiation treatments. I remember her showing me where her nifty little tattoos were placed and discussing her plans to eat a ketogenic diet and incorporate fasting. I couldn’t possibly imagine how she was feeling. Her first line of treatment was failing, and we were just a year in.
When you see it, you can’t un-see it
I know, that’s longer than what it used to be but you’d think we’d be much further along in gaining life expectancy by the way modern medicine peacocks itself. Before anyone judges about why people turn to different forms of medicine, you have to understand why some of them do. I will write about Lea’s thoughts and decisions about that shortly and I hope that it sheds some light and creates some understanding for the many who mock and ridicule.
I’m not complaining, no way. She had a full year of doing quite well, it’s just that she was so young. We had so much hope that she would be able to live with this for years to come after witnessing her stellar response to this treatment. This was a bit of a setback for her, but I saw the fire in her eyes as she started to try and take control by educating herself.
I saw the best coming out in her and the ugly beginning to show in her oncologist. What I saw in the medical community (I experienced it and saw it with my own daughter as well), is the side many wish to deny or ignore. The appearance of her once, very open and willing to discuss possible options oncologist, turned Jekyll & Hyde.
Having to fight for your life is one thing, having to fight a supposed ally simultaneously who holds the possible key to the things you need to access in order to survive, is cruel.