Five years, & nearly four

Today is I’ll Live’s fifth blogoversary!

I couldn’t have anticipated a lot of things when I began this project, not least among them that I’d be composing this post from a different home zip code than the one where it started — or that my father, who lovingly commented on my posts here while he could still remember how to, would no longer be here today.

When I started writing here, I had exactly zero guarantees I’d make it this far. When my melanoma metastasized in 2014, treatments were looking promising, but my survival was certainly not guaranteed. I remember doing a bit of market research, to figure out who was writing the most prominent melanoma blog in 2014. I found that many of the blogs simply trailed off… or ended, badly.

Giving this blog the name I did was primarily intended as a dismissive, tongue-in-cheek comment on my health situation (the distancing of cancer via humor being my number one coping strategy), but it was also an unconscious wish/intention/prayer. It seems to be working so far, but for no particular reason that I can understand; people have died and continue to die from my disease, people who wanted to live just as much as I do. I think continually of Kate Boone and Jody Budde… to name just two of the departed.

When I started, I aimed to make this blog a useful place for fellow patients to check in and compare notes, when their treatment and side effects might have been similar to mine… but I didn’t actually work hard enough at that. I experimented with subject tags early on, but was too steroid-addled, sick, distracted, and/or freaked out to do them well. Now that I have as many posts up as I do, the task of tagging seems impossible and futile. Also, the need for the more explanatory kind of writing I was doing at the start of the blog has decreased. Immunotherapy and targeted therapy are things people have heard of now. I’d say about 40% of the time, when I’m speaking to someone I’ve just met about my cancer experience, they will have heard of one kind of treatment or the other.

Pausing to consider the huge gains that have been made in treatment of advanced melanoma over the past few years is positively dizzying. But there are still too many question marks. Survivorship for advanced melanoma patients having been established beyond a shadow of a doubt, I think we now need recognition that those patients who do get to survive should have a better idea of what we might be in for.

Say you’re on the same medication for over four years and it suddenly turns a bit toxic (I’m looking at you, Tafinlar and Mekinist). If you’re switching to the competing brand, how will it affect you? What do you need to worry about? What don’t you need to worry about? I don’t quite have a place to get those answers, beyond the discussion boards, where responses may be all over the map (aka anecdata), or asking my doctor.

It would be nice for people in my same boat to reach a point where we can stop intoning to ourselves, “We *are* the survivorship data,” and instead be able to refer to a body of concrete evidence of our continued existence.

Today I visited the retina doctor, Dr. H, again. Although I’d upped the frequency of the steroid eye drops, the floaters worsened, and I panicked about facing a weekend unsure whether I was going to lose my vision in that eye. He had mentioned when I saw him earlier in the week that injecting steroid might have a faster effect on the swelling, but I was too freaked out to accept that.

Another coping mechanism throughout my illness has been to find amusement in waiting rooms any way I can — whether that is analyzing the selections playing on what I dubbed Cancer Radio; the free magazines left in the waiting area; or more recently, the intrusion of television in medical offices. This gem of a video was playing on the nonstop, nonspecific “wellness” channel in the retina group’s waiting room today. I had to film it to be sure I wasn’t hallucinating.

Today, the assistant ran another retina scan which showed that the swelling had in fact started to decrease with my use of the steroid drops. Dr H concurred. But I decided to ask him again about the shot, and he explained that it would not be going into the eyeball, but rather between the eyelid and the eyeball, towards the back of the eye where the swelling is. Taking courage from my mother, who has coped with similar circumstances, I decided to say yes.

The next thing I heard Dr. H say to the assistant in the other room was, “Get me the sclerodepressor.” I panicked a bit at the sound of that, then a bit more when I saw the instrument, which seemed more appropriate for dental torture than ocular torture. Dr. H finally showed a sense of humor by saying, “I call this my pain stick.” I knew then I could laugh. Then I was tipped back in the chair and told to look in a number of different directions while bright light shone in my eyes. I squeezed my thumbs against any potential pain, but there was no need. I saw the syringe approach, but my eye had been numbed, and it wasn’t actually piercing any part of my eye. I only felt a vague stinging that was soon gone.

Dr. H tried to fake me out by saying he was now ready to inject, but I knew the worst was over. I walked out feeling rather bulletproof and walked back to the car. Oh, did I mention that I chose today’s doctor visit as a pilot attempt at not paying for parking? I visit the medical campus where Dr. H’s office is located so frequently, and I hate paying eight or sometimes even as much as twelve dollars for parking. Today, I mapped the distance from the shopping mall and realized it was only three quarters of a mile away. I parked, went in to the mall to get a cappuccino and something to eat while I walked, then set out. It was a clear, sunny day, but suddenly cold. I needed gloves and a hat, which I hadn’t brought. The walk on the highway overpass was especially chilly. But it felt good to move — beforehand, with a warm drink, and afterward, knowing I’d overcome yet another medical procedure that seemed unthinkably horrible until I actually experienced it.

Which brings me to the fourth anniversary, which I will mark on November 18. That day in 2015 was the date of my second gamma knife surgery. It wasn’t entirely clear at the time that it was going to work, that it was needed, or that invasive brain surgery wouldn’t have been more successful. But I am grateful to this day that Dr. K made the call he did. Since that second surgery I have been in long-term remission. One more year, and I’ll reach the coveted five year survival mark. (Why exactly it is coveted, I am not sure. I covet every single moment of disease-free survival.)

Thank you, dear readers. I thrill to your comments and likes, but I also get a charge from seeing the world map that tells me where you’re checking in from. Just writing this blog has kept me sane, but knowing it’s being read? That keeps me warm. ❤❤❤

Tectonic shift

Ask your body

The past months have been the longest uninterrupted stretch of time I’ve been dealing with a single side effect to my cancer therapy since I started. Iritis returned in late July, and here we are in November, and it still hasn’t resolved.

Last week things seemed to take a turn for the worse. My right eye had more floaters (in case you’re unfamiliar, those are the spidery or cobwebby strands across your field of vision — if you’re lucky, they go away). The flashes of light from the week before gave way to more eye pain. It started to seem like a More Serious Situation.

But we were traveling this past weekend, so I did the next best thing to seeing the retina doctor in a timely way: I informed Nurse Practitioner Megan that I’d be taking some time off from my meds. She agreed, although the fact that I was still suffering from this condition seemed to set wheels in motion. She said she’d discuss with the pharmacist and Dr. L (my oncologist).

We had a fabulous weekend back in NY, visiting friends and seeing a show and eating everything that crossed our path. My eye pain was manageable with Tylenol, and I even managed to do some of the driving — turns out having eye floaters doesn’t bother you as much in the dark.

When we got back, though, I felt like it was time to see Dr. H (the retina doctor). Because of my insistence that I didn’t need my pupils dilated at every visit, he had stopped. I knew this visit would be different, though.

After he took a closer look, Dr. H informed me that I have swelling in my retina. He presented a few scenarios, including increasing the steroid drops to every two hours, or else a steroid injection into my eye. You can guess, I think, which one I opted for.

I wrote back to Nurse Practitioner Megan and let her know the result. She informed me that the team (which now included my beloved Dr. P, with whom they consulted) decided that I need to get off of Tafinlar and Mekinist, and switch to newer versions of drugs that do the same thing (Braftovi and Mektovi).

So it looks like maybe this is goodbye, Tafinlar and Mekinist. You’ve served honorably since 2015, bouts of iritis notwithstanding. I will miss your name that sounds like a Norse god’s, Tafinlar, and I’ll never forget the short work you made of my brain tumors. Mekinist, I will not miss the way you needed refrigeration and your tiny pills that loved to jump out of my hand while I gathered the rest of them.

While this is far from negative news, it is a major shift in my treatment, and one that I had hoped to avoid, in the interest of not fixing what isn’t broken. But the picture of my swollen retina today convinced me this wasn’t something to ignore.

I hope Braftovi and Mektovi (names that belong on a Greek restaurant menu) will be good to me.