It is often during the most challenging times that something happens to remind you that there is hope and strength when you need it. Such a time presented itself to me this week when I was sitting in the infusion room after a long 3 hour wait to to get there. The scheduling and pager system had been on the fritz at Fox Chase all day and by noon, the wait to get a chair was over three hours. My appointment was 12:15. I got in at 3:30. Super fun. While it was annoying to have to wait, my dad takes me to treatment, so I had someone to talk to and I didn't mind so much. Time passed. I would've rather been anywhere else, almost, but at least I felt OK and was in good enough spirits to enjoy a conversation with someone. It has not always been that way during treatment.
Much to my surprise, about 30 minutes in the chair, a doctor came over to me with a big, gift-wrapped bag labeled "Lisa's Army." Having not heard of this before, I saw the bag and said, "Uh-oh, what did I do?" In jest, of course. All in jest. Dr. Jain, the doctor standing before me, explained that I had been nominated by my doctor, Dr. Dotan, to receive a comfort kit from Lisa's Army (lisasarmy.org), which is an organization founded by the family of Lisa Loonstyn-Golden, who passed away at 24 from ovarian cancer, to bring comfort and care to patients fighting cancer. The honor of receiving such a gift was overwhelming. To be nominated by my amazing doctor in itself is a gift. The bag contained all the comfort items you could want - a blanket, hat, tissues, nausea pops, chap stick, lotion, etc. - clearly Lisa understood chemo. But it also contained an iPad. An iPad. So that three hours wait? Boy don't I feel silly now. It all comes around, doesn't it? Consider me one of Lisa's Army now. What an amazing gift to get.
As for the cancer front, here is what's new:
Last week I had a CT and while the news wasn't bad, it wasn't everything I was hoping for either, although I could sense that going in. No obvious progression. The mets on the spine have been stable since October, which is good, and there is no new tumor growth. However, the surgery wasn't a screaming success. My lungs have three pockets of fluid in them, two which seem to be growing from either side of me where the chest tube incisions were made. These balloon-type pockets (think of a long balloon, not a round one), are sitting right, smack in the middle of my lungs. One in each lung. The one in the left lung is right behind my heart, causing extra issues with breathing. Not what I wanted as an outcome. Less overall fluid, but in the worst possible spot, so the side effects are worse. I'm not being tapped anymore on a weekly basis, but I also cannot walk up a flight of 6 stairs without getting very winded.
So the plan is this - one more treatment (that was Monday) this month and then, at my next appointment with Dr. Dotan, we assess the lungs. If the lungs are even slightly better, we continue with this treatment. If they are not, and I honestly don't think they will be since I've been on this for a while with continued fluid build up, we get me signed up for a clinical trial we've had waiting. Dr. Dotan and I both feel that if the treatment now was truly working, the fluid in the lungs wouldn't have built back up after surgery. I've had three treatments since surgery and we should've seen a difference by now. But we'll assess again on New Years Eve day. Happy New Year! On the bright side, we now have this new drug I mentioned last time from Eli Lilly for gastric cancer that is a standard therapy. If the clinical trial doesn't work for me, we have that in our pockets. Always something down the road. That's the goal. Keep it chronic. A little less annoying would be nice, though. Not gonna lie.
So that's it for me. Have a wonderful, beautiful, precious holiday season with yours and remember what this time of year is all about. (Hint: it's not presents!)
xo,
Lisa
