Tag Archives: chemo diaries

The Rash Is Back

Spoiler alert: my rash has returned.

Before I get into the details of this new leg of my journey, I’m taking a moment to reflect on the side-effects of the past. In August of last year (2017), I stopped taking chemotherapy due to signs of progression. After about a month of cleaning out my system, I noticed a serious boost in both my mental and physical energy levels. My body began shaping up. I felt really good. And I started my first “targeted” therapy, the drug Gilotrif (generic name, afatinib).

Gilotrif was highly promising at the time. It had shown some level of effectiveness on the HER2 mutation in cancer studies but was still off-label for my use because it was designed to target a very closely related mutation. I loved it at first, however, because I kept feeling better and — in comparison to my 2 years and 8 months on Alimta (generic name, pemetrexed) — there was just an amazing lack of initial side-effects. Alimta had been fairly easy to tolerate overall and I had no real complaints considering how well it had worked. But I did have some skin and digestive issues, as well as persistent fatigue, that plagued me every month. Toward the end, the skin issues were particularly bothersome, and I was beyond thrilled when they cleared up. Continue reading The Rash Is Back

Another New Beginning

Well, it’s time for another needle. I’d been successfully avoiding a lot of these for the past six-ish months, but the afatinib pill I had been taking simply wasn’t working the way we needed it to. (Which is to say, it did not stop the cancer from spreading, much less reduce its presence.) So, on this uncharacteristically rainy Southern California day, I commuted through a maze of side streets to avoid morning rush hour traffic on my way downtown to the university hospital where I am to receive today’s infusion. It’s a far cry from the cozy satellite clinic I had been accustomed to up in Pasadena. I’ve spent the better part of 90 minutes waiting for things to be prepared since I checked in; I’ve wandered the maze of the hospital, searching out a paltry offering of snacks in the lower-level cafeteria and the free coffee in the main waiting room, sitting in various rooms and surfing the free Wi-Fi (but unable to stream Flint Town on Netflix, much to my chagrin).
 
Here, in the Day Hospital, as it is called, the vibe is wholly different than the spa-like atmosphere of my old chemo haunt. While this is certainly clean and bright, it feels like a hospital. There is nothing aesthetically pleasing about the large room cordoned off by sliding curtains. A few windows along one wall allow a tiny amount of natural light in, but they may be closed off by curtains at any time. Yet the reception staff seems bright and friendly.
 
The drug I am getting today — ado-trastuzumab emtansine, or Kadcyla — is not a traditional chemotherapy, and there have been some weird holdups in getting it properly scheduled. In part, this is because my use will be slightly off-label. My insurance company refused to approve it — but they also would not deny it, leaving me in a strange limbo where other plans were difficult to make. The hospital pharmacy has been working with the drug manufacturer to cover the costs in case insurance ultimately denied coverage, and we are moving forward with the understanding that, somehow, the medication will get paid for. These concoctions are so expensive that it is unreasonable to expect that patients could actually afford to pay out of pocket, but somehow the system works to cover these costs most of the time. The trick is figuring out how. I am three weeks delayed getting in for this new treatment, which hopefully will be drastically more effective than the pill I had been taking. At least the bar there isn’t very high.

Continue reading Another New Beginning

The Overstayed Welcome

We all know — or we should all know — that lung cancer is one of the biggest killers in our society. With an estimated average of 433 people dying every day from some form of this disease, there is no question as to why it is considered such a horrifying diagnosis. Lung cancer kills more than any other cancer, and more than its three closest competitors in the cancer arena combined. If there were cancer cage matches, lung cancer would win virtually every time based on the sheer volume of its devastation and mayhem. Yet, in spite of receiving only a fraction of the research funding that other cancers get, a surprising number of treatments have emerged to help lung cancer patients outlive their initial prognosis.

But you have lung cancer! You’re expected to die. And, by the way, you’re expected to die quickly (and brutally). That is what the common narrative tells us.

Lung cancer treatment has made amazing bounds over the past decade. For a growing number of patients, living with Stage IV lung cancer is no longer an immediate death sentence, if a death sentence at all. For some of them, especially those diagnosed “earlier” in the Stage IV spectrum, while there are still a few months to alternate between treatments to find what works, or for those lucky enough to have an actionable mutation, even this advanced type of lung cancer can be treated as a chronic illness instead of a fatal one. Earlier and better diagnoses have led to younger and healthier patients having a chance to engage in this challenge before their cancer has beaten them down from within, and they have brought a new level of perseverance to the process. Continue reading The Overstayed Welcome

Feeling Defeated

Everybody has days like this sometimes.

I suppose this is a good time for a disclaimer. My mother probably should not read this post. So, you got that Mom? Go ahead and read something about positivity.
Like I was saying, everybody has days like this sometimes. It isn’t unique to cancer patients either. There are days, every so often, when anyone might wake up and just feel like it’s too much. Like they can’t go on. Like they’d rather simply not try.

Continue reading Feeling Defeated

Looking Fine Vs Feeling Fine, the Deception of Image

Coping With the Pressure of Looking Fine

Feeling Relatively Fine

Obviously, a certain theme has been on my mind recently. It is one, no doubt, that I will continue to explore.


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Dropping the Cancer Bomb

Dropping a bomb or sabotage — what does it feel like when you get the news of someone’s cancer second hand or by accident? That is what I have been pondering this afternoon since offhandedly mentioning my blog address in conversation earlier, without pausing to put its content in context. Since I don’t look like I am sick, a non-subtle reveal that I have lung cancer can be like a slap across the face. It’s a shock. One I deliver, I expect, far more often than I intend to.

I’ve been told on more than one occasion that it should not be my problem, that I should not feel obligated to hold somebody’s hand when I tell them about my “health condition,” and that I cannot be responsible for another person’s reaction to my disease. But I also consider the reality that most people know someone, quite often family or a close friend, who has struggled with a form of cancer. Depending on where you get your statistics the numbers vary slightly, but no matter which source you use the bottom line is that over a third of us develop some form of cancer. That means out of every ten people you know, three or four of them are likely to have cancer at some point in their life. It is no surprise, therefore, that on my street alone I know of seven patients — and I should stress that those are only the ones I know of within less than two blocks, not necessarily the absolute total for the street. Also, I’m not particularly social or friendly, in case that is relevant to knowing what neighbors are up to. In other words, there are probably more of us on this stretch already.  Continue reading Dropping the Cancer Bomb

Spoiler Alert: Side-Effects Show Up

It has been over two weeks since I began taking my new drug, afatinib. Over two weeks of feeling good, feeling like the chemo has been thoroughly flushed from my system even as I have diligently taken these new pills, feeling the best that I have in three years. I have been keeping a journal this time, chronicling how my body is responding each day, trying to pave the way for a better understanding of how to live with this new treatment. For the first week, anyway, it almost seemed like it was going to be too easy.

There are two weeks of video updates on my Patreon feed, talking about how great I feel and wondering how bad the side effects will be once they really kick in. I had been prepped by my oncologist that it was very likely that I would experience worse side effects than I had with the chemo I had been taking. This was based on how well I tolerated pemetrexed, the chemotherapy drug that had kept my cancer at bay for so long, but not so much on patients in general having a particularly tough time on afatinib. Which is not to suggest that I expected a walk in the proverbial park with this new drug.

Still, the first week was amazing. It was almost like I was taking nothing at all. Sure, there was some digestive stuff going on, but nothing outside of the realm of what I would have been used to in a previous life if I decided to live off of bean burritos for a few weeks. And I love a good burrito, so it would be worth it. But by day eight, I realized that the side-effects of the drug were presenting themselves quite visibly. Continue reading Spoiler Alert: Side-Effects Show Up

Sealing the Roof

Some time back, I wrote about the importance of clearing the roof of debris. Like many things I write, it was intended as a metaphor, illustrated by happenstance with imagery of me clearing actual debris off my actual roof.  Because sometimes, in spite of life’s special curve balls, we have to muster the energy and resolve to do stuff that simply needs to be done. And in so doing, perhaps we can find joy or a sense of gratification, and maybe even extend that process to a more metaphysical level, using it as a tool for release or letting go, or at the very least, we can check one more thing off the ever-growing list and move along to the next item.

Which, in this case, is a roof sealant.

There are cracks in the surface, though it looks smooth and sound to the naked eye.

Last winter, we enjoyed the heaviest amount of rainfall that Los Angeles has seen in years. Although not enough to entirely counter the trend of drought that has plagued the region, it did refill reservoirs and contribute to record snowpack in the mountains, dramatically relieving the strain on water reserves. However, this exceptional amount of rain also managed to seep through the apparent (but not obvious) cracks in our roof, puckering the paint in our kitchen ceiling. While the roof remains structurally sound, the asphalt sheeting is showing its age and beginning to crack under the incessant heat of the sun.

When a minor leak from our water heater led to a small amount of construction in our kitchen, we ended up repainting the entire room and fixing the ceiling in the process. Of course, that will look fabulous up until the time when we have another multi-day deluge. Continue reading Sealing the Roof

Interview With Radiation Therapist Turned Stage IV Lung Cancer Patient

I meet a lot of interesting people through my lung cancer support group. Most of them are on some form of chemotherapy. A few have tried immunotherapy. Some targeted drugs have been in the mix, along with surgery and radiation. The one commonality between them is their optimistic perseverance. But it isn’t rooted in blind optimism or faith — the whole point of the group is to share perspectives and experiences, gathering useful knowledge in the process. We all come with our own perspectives that inform our decisions and influence how we share, most of us having begun as (more or less surprised) patients that have evolved into advocates. Once in a while, a patient arrives with multiple perspectives built-in, hardwired to see her situation from both sides of the exam table.

And if I’m really lucky, she lets me interview her for my podcast:


 

If this post resonates with you, please consider supporting my work through a monthly subscription to my feed on Patreon, or a one-time donation through PayPal. Follow me on TwitterFacebook, Tumbler and many other fancy social sites or apps. Please share my posts to groups you are involved with on Reddit or Google+ or anywhere else that you feel it will help or enlighten or inspire another reader. (Sharing buttons are below the post!)

Thank you!

Inside a Chemo Clinic Phamacy

Where the concoctions are prepared.

Before I concluded my chemotherapy, I sat down with the pharmacist who had mixed my drugs for nearly three years and recorded our conversation for my erstwhile podcast, The Deep Breath. It offered a revealing look inside the process of administering chemo, as well as other drugs used to treat cancer patients.

Meet Evan, the pharmacist. Click his image to hear his insight into the treatment of cancer through pharmacology.

I did not realize that I was one of the longest consistent patients currently receiving treatment at this facility. Although I was preparing to call chemo quits after slightly more than 2.5 years, I knew of at least one patient who had been on the same basic regimen as me for around seven years. But that had been before my time. As I settled in to interview my pharmacist, he revealed that he was not aware of any patient at the clinic who had been receiving chemotherapy as long as I had been since he started the job. I appreciated the special distinction, even though I had mixed feelings about it. Continue reading Inside a Chemo Clinic Phamacy