Hello! Lots to write about today…
First, I’m pleased to report that last week I finished another round of TAS-102, which seems to continue to work, at least in terms of managing my symptoms. I did have a spike in back pain last week, but I’m hoping that had more to do with the stress and exertion of being over-scheduled during our week-long trip to NY. I’m still waking up some nights, thanks to the pain, but I think the number of painkillers I’m taking in any given 24-hour period is going down. I’ll know more over the coming days, I guess.
Speaking of our trip, it was great to be back in the office, seeing friends and colleagues there, as well as family and friends outside of the office. Truth be told, we tried to get too much done, and I paid the price physically. If there is another trip in the future, there will be more downtime scheduled. There has to be. But, I’m thrilled we were able to make the trip and, in a few weeks, I’ll be optimistic and start planning my next one.
I won’t bore you with the all the details of who I saw and what they said, aside from two interesting encounters with friends. One was a couple with whom we’ve been friends for about 25 years. We don’t see each other often, but whenever we do it’s always wonderful to catch up. Our conversation – brief as it was – turned to this blog and our friend said that back in March she noticed a shift in my writing.
“I don’t like it,” she said. “You’ve become too philosophical, whereas you used to be a bit more of a jerk and that was more entertaining. Now, your writing is becoming deeper, and I don’t like it.”
Well, that was a fine how-do-you-do and it wasn’t until I was talking about it with Tammy that she explained to me what our friend was saying. She was simply pointing out that she didn’t like the fact that I’ve become more philosophical in some of my writing because of what it represents and not because she – God forbid – doesn’t like my writing. To her, it represents that I am somehow less committed to “fighting” (Careful, there’s that word again…) and that doesn’t sit well with her.
I get it, and she is both right and wrong at the same time.
Yes, my writing has shifted somewhat in tone – I’ve written about this before – but in no way am I less committed to pursuing reasonable treatment options. I simply understand where I am in the process and what the future most likely holds. That doesn’t mean I’m morbid or defeated or depressed or fatalistic. It just means that I’m realistic. I think I have always been, based on the information I’ve received from my healthcare providers. They guide me and I make my decisions the best I can because, at the end of the day, I’m the one who gets to have the needles stuck in him, and I’m the one who has to endure whatever side-effects there are.
So, for now, TAS-102 seems to be doing well for me, and I’m thrilled to have it for as long as it lasts.
RC, no harm done and I forgive you!
The other funny story was when I saw another friend whom I’ve known for at least 10 years and, upon seeing me, he couldn’t get over how great I looked. (In all honesty, it may have been the suit and newly shined shoes – something else I’ve missed terribly – or the extra couple of pounds (I’m now back up to 65kg/143 lbs.) or the fact that I was just happy to be in NY…) He and his brothers just couldn’t believe I looked so good. As he put it: “You look like someone who once had something but now everything is OK.” And: “You do not look like what I expected after reading your blog.”
Really? Is it that morbid?
Frankly, I was taken aback at first, but now I think I get it. Cancer is funny that way. Sure, there are cancer patients who look like cancer patients (whatever that means) and then there are cancer patients who, like me, look pretty damn awesome. And that can be for any of a number of reasons.
So, my apologies if I don’t look like what I’m supposed to for someone with a Stage 4 motherfucker of a cancer, but rest assured, it’s quite real, quite threatening, quite the source for insomnia, and quite a big deal. But right now, I’m doing well because I look quite awesome (as was pointed out to me) and I have baskets full of medication of all sorts to make sure I continue to feel quite as good as I possibly can.
It’s OK, SS, no harm done and I forgive you, too. 🙂
Finally for this update, today marks nine years since my family and I landed in Israel. In many ways, I question whether or not I should be writing about this in this forum, as it’s not really on-topic. But then I realized, it most certainly is.
First, it’s very possible that the cancer was already growing inside of me back in the summer of 2007 when we boarded the ELAL plane.
Second, and more importantly, there are a number of reasons why Tammy and I decided to make the 6,000 mile move…none of which I will get into here because that would certainly be off-topic. What is relevant is the retrospective real reason we are here, the one we could not have possibly considered. Sure, my children have flourished in a way that would not have been otherwise possible. But that’s not what I’m talking about.
I’m talking about being diagnosed and treated here.
It’s entirely possible that my healthcare team in the US would have been as good as the true professionals I’ve been lucky enough to meet here.
It’s entirely possible the treatments I’d have received in the US would have been as effective.
But one thing is for certain: had I been diagnosed and living in the US, pursuing treatment there, I’d be flat broke.
There is no way it would have been otherwise. Here, cancer patients are treated very well. Sure, the care isn’t as “pretty” as it is in the US, but everyone gets seen when they need to be seen. People still ask me if I’d rather travel to the US for treatment and I patiently explain to them that, in my case, there’s no reason to do so. I know of cancer patients with “very good coverage” who have to fight tooth and nail for everything. It makes no sense. Here, I get what I need, and more.
So, as I look back over the past nine years, I have many thoughts and many reasons to be thankful for how amazingly well my family is doing, starting with my children. I look at them and simply can’t believe how they are turning out.
But, equally so, I am grateful for the medical professionals I’ve met and the treatment I’ve received, and for the knowledge and understanding as to what the “real” reason is that we are here and able to live this dream.