For the first time in a long time, I just told the story about my diagnosis. After a year of living with this cancer I realize that I am incredibly fortunate to still be able to do the things that I do, and it’s easy to forget how I got to where I am now. As I was telling it, and drawing more nearby ears, I was reminded just how unlikely my situation is by the reaction of the audience. Even to my chemotherapy nurses, who administer drugs every day, my situation is still so unbelievable.
Today was my sixth chemotherapy infusion. Today was a day that I was looking forward to after starting down this path back in April. Today was supposed to be my last chemotherapy infusion. But things change. Not always for the bad, but change nonetheless. So, I wanted to provide an update on some of those changes.
In late January, right after hunting season on one of my routine visits to Houston, I was admitted to the hospital at MD Anderson shortly after my PET scan showed a fluid buildup which was pushing on my right ventricle. It’s rarely ever good when your doctor calls out of the blue on the day before a scheduled appointment like mine did and calmly advised that I go to the ER to tell them I need to schedule a procedure to remove the fluid that day. There may have been some miscommunication about that about whether I should have actually been admitted after that, but I was there for two nights nonetheless. In that time, I learned firsthand about Interventional Radiology (IR) and was able to experience the sensation of seeing a large needle go into and standing upright out of my chest. Once again, the drugs provided did not disappoint as I couldn't care less as I watched them pull 110cc’s of “old blood” out of my pericardial sac. With no other evidence of disease showing anywhere else, but with the “old blood” having cancer cells in it, it was just something to watch and then move on.
Of course, I can’t give an update without talking about the amazing parts. Just two weeks after that procedure, and a little scare from Trooper that involved doggy accupucuture treatments, Meredith and I were able to spend some time across the pond in Amsterdam, Paris, Florence, and Sorrento as a one-year anniversary/Christmas present/hopeful (but not) babymoon/30th birthday celebration/bucket list trip. We landed back in the states feeling high on life only days before Italy and then Europe as a whole was shut down to travel due to the pandemic and just in time to quarantine for 14 days which then turned into working from home for six months and still going.
April rolled around and, in the middle of a statewide shutdown in both Louisiana and Texas, it was time for another PET scan. Not wanting to do anything more than we had to in Houston, we drove home right after the scan since we didn’t get an unscheduled call from the doctor. Instead he waited until the virtual visit at home the next day to tell us that the fluid was back. So, I was scheduled for another IR procedure to remove more fluid sitting on my right ventricle, again. This time, I was able to just do it as an outpatient procedure as it should have been done the first time. Learning from last time and knowing my body, I was less surprised since I could feel the discomfort in my chest that was there back in January. But there was another change that wasn’t there before that did surprise us. In addition to the scan showing the golf ball sized pocket of fluid, there was, for the first time since being diagnosed, an active spot on my left rib that showed up on the PET scan.
Knowing what to expect with the IR procedure made the second go ‘round a little less exciting and slightly more uncomfortable. They used a different, more flexible needle that time which rested on my chest versus standing upright which allowed them to get closer to my heart. A very strange and unnatural feeling which I can feel again as I type this. Weird. The fluid that was drained was the same “old blood” that amounted to double than was there previously, 220cc’s. Still not as much as was initially drained (remember the pericardial window in April 2019) but now I had a recurring effusion with cancer cells in the fluid that was filling up in the same small pocket around my heart. That, along with the new spot, was enough to trigger a change in my treatment plan.
Normally, what happens when there is a need for a change in treatment, the medicine that targets the genetic mutation (TKI) will stop working due to a resistance to the drug or a new genetic mutation. So far, nothing about my situation has been normal since the beginning of all this. So it was actually a pleasant surprise to learn that, in my case, I was once again different. It was only what the doctor described as the medicine’s lack of ability to keep up with the cancer. So being a little unique was a good thing for a change. It allowed me to remain on Alectinib, my first line of defense, with an added traditional chemotherapy treatment and keep the second and third lines of defense in my arsenal.
After a few virtual and in-person visits, all three of my oncologists agreed (which is rare) and pointed me down this path while insisting that I would be able to tolerate the added chemo treatment vey well with little side effects. So, without hesitation, I was scheduled for the first of six chemo infusions which would start on Memorial Day weekend, a year to the day that I started Alectinib.
In my lifetime, I have known too many people to go through chemo and have seen or heard how awful it can be, so facing it was a big unknown. I was convinced, however, that what I would be doing wasn’t “real” chemo because every doctor and nurse assured me that my drugs, Carboplatin and Alimta, weren’t that bad. They said I wouldn’t lose my hair and painted a picture of me being able to continue normally. Even during the education course, the nurse insisted that this was a well-tolerated treatment and I would be able to maintain a normal lifestyle.
What I wish they would have told me was that my drugs were terrible and that I should prepare for an awful experience because after the first infusion I found out first-hand what “real” chemo was. I felt great for 24 hours following the IV infusion and then after eating normal food, like Canes and a burger because I was convinced I could, I was woken up at 2am in desperate need of the nausea meds I was given. Chemo sucks. While it is true that the drugs I got are not comparable to some of the others out there, and my every-three-weeks schedule is not as frequent as other regimens, there was nothing that wasn’t real about the effects that first time. Since then, I’ve figured out the best medicine to take to best tolerate the side effects and, by now, it’s a fairly smooth routine.
After two infusions I was due for another scan to check the progress of everything. I was advised not to get my hopes up because, in most cases, there was usually not much change in the images in that short amount of time between the scans. So when the scan after just two infusions came back with little to no fluid around the heart and the spot on the ribs gone, the doctors were very excited with the change. The chemo plan was working. So well that they decided they would change the original plan of stopping at six and just keep going beyond that with no end in mind.
So, I’ve now completed my sixth chemo infusion and I’m not stopping here. Every third Thursday from now until it stops working, I’ll be hanging out with the best chemo nurses around to get my infusion of Alimta and then relying on my nausea drugs over the weekend to get back to normal. The original plan to stop after six was a nice thought and it would be great to just be done with it but, as with so many other things, I will do what it takes to keep getting these great scan results. Cancer has once again changed our routine and this chemo has somehow become the new, new normal and I’m sure it will change again at some point but we’ll worry about that later.
Until then, we are excited to be able start our next adventure which rhymes with limshreeto shmertilization since I was advised before starting any treatment by one of the people who I watched get through chemotherapy to prepare for the day that we wanted to start a family. That is just one of the things that cancer tries to take away. Fuck cancer.
Telling my story again was a fun exercise and I think it’s only getting better with each change. Though I pray that the next changes don’t come any time soon, and when they do, it will be the change we are trying for. I often forget, mostly due to my goldfish memory, how lucky I was to have the best care available to me when I needed it and how much support we had throughout all of this, especially at the start. So as our story continues to change and grow, and as we start another adventure, we will embrace the prayers, support, and amazing doctors that have gotten us through so much already.
