I am a planner. There is comfort, for me, in knowing what is happening next. We have been planning our lives around Dave’s chemo schedule for over a year now. Knowing which weekends are “good” weekends determines greatly what events/activities we will do. Every month, I mark the calendar for labs, doctor appointments, day 1 of chemo and day 3 of chemo. It gives a little bit of structure in an uncertain world.
On Tuesday, we met with Dave’s oncologist, and Dave’s chemo schedule was changed from every 2 weeks to every 3 weeks. Dave and Dr. Spira were discussing whether that would start this week (his previously scheduled time) or next week (giving him a full 3 weeks since his last infusion). I actually interrupted and asked if we could check our calendar. I interrupted. And asked if we could check the calendar. As soon as it was out of my mouth, it felt selfish and ridiculous. I wasn’t thinking about Dave getting a bit of a break right away and an extra week to recover. I was thinking “What will that look like 3 weeks from now? Or 4 weeks from now? Do we have anything planned for then?” It’s the ugly truth. I was concerned that Dave’s CHEMO schedule might put him on course for treatment during graduation week and what that would mean for everyone involved. As it turns out, either way would have missed that week so I could have (and likely should have) kept quiet.
1. Stable scan = same number of tumors, same sizes. If we are keeping it real, which we are, this is as good as we can expect. So, yay, for good news! (This is me trying to be excited. I want it all. I want tumors to miraculously disappear. But I am trying not to be ungrateful.)
2. Compromise. Not a chemo break but longer between chemo infusions. Dave will now be on a three week schedule instead of the two week schedule he has been on for the past year. I feel much less stressed about this option, and he likes it because he has more recovery time.
3. Rain washing away the pollen.
4. Homemade chicken/gnocchi/spinach soup.
5. An oddly enjoyable walk with the dogs (not even mine but my parents’) despite the puddles and downpour.
Most mornings I wake up at 5AM give or take a few minutes. The cause might be a dog whining to go out, or Dave shuffling around. There is a critical moment (I know you know what I am talking about) when I can either shut off my brain or a tiny worry plants itself and won’t let go. Lots of mornings I hush up my brain and send stressful thoughts packing. But on lots of mornings, that first thought about Dave’s health or Sammi heading off to school or money or stuff that needs to get done starts the snowball effect of other worries. It is THE WORST. Tomorrow we head to South Carolina where I sleep soundly and can keep stress at bay. Which is perfect timing because Dave has a scan on Tuesday. And depending on what that scan reveals, he would really like to take a break from chemo for a bit. While I understand that he wants and definitely needs a break, this induces panic in me on so many levels. I’ll check back in with you all on Tuesday. In the meantime, if you are up in the wee hours, I’ll be up. We can play Words with Friends. : )
Dr. Spira started the conversation with “Dave your scan looks okay.” I would have preferred “fantastic” or “miraculous”, but I guess I’ll make do with “okay”. Basically, the three lung lesions have increased in size very slightly – we’re talking millimeters of change. Four of the tumors they have been keeping track of in his liver have also increased a bit. One went from 1.0 cm to 1.4cm so nothing earth shattering but not in the direction we want things heading. Dr. Spira said that he is not “overly” worried but this just means that we should continue to keep a close eye on things. He said it doesn’t mean “that the chemo has stopped working”. His recommendation was that Dave continue with his current treatment plan.
The low thyroid is likely caused by the chemotherapy so they will continue to monitor it when he has his labs done at the office every two weeks. The high liver function blood work didn’t alarm him at all. Apparently this is something they also monitor when Dave has his labs done. The slight increase in his CEA level could also be due to a variety of factors.
The good thing about going with Dave to his doctor’s appointment is that he confesses things that he might not otherwise mention. He has been having pain in his right side and was concerned it might be cancer related. He hadn’t mentioned this to me prior to the appointment. Dr. Spira reassured him that there was nothing on the scan that would cause that pain and that it is more than likely a muscle strain.
I mentioned previously that Dave was having some issues with his nether regions. Turns out he has some kind of internal abscess which will have to be surgically removed after Christmas. So, that means he is taking a chemo break at least for a little while. Dave is looking forward to some time off from chemo. I am concerned at the timing, but as with this entire journey so far, there isn’t a decision to be made. He has to have the abscess removed because it is infected. There is one path so that is the one we are one.
So the scan was fine.. Ill call you later regarding the possibilities. One spot a mm or two bigger, another smaller, all of which we call in the standard error of measurement of the scan (think romney obama 51 49 but the error is +/-5 points), so the same and all dead tumor spots, which is good and perfect in my regards. I will call you later today between stuff I have to do at the hospital and voting.”
Dave got this email yesterday from his doctor. It is essentially what we have been seeing over the last couple of scans – stable disease. The “all dead tumor spots” was new information and got our hopes up that a chemo break might be possible. When Dr. S. called Dave later in the evening, he said that he still has live tumor cells in his body. Armed with this information and the fact that he can’t continue the drug trial unless he stays the course, Dave has decided to continue his full chemo regimen for now.
Dave’s wonderful sister, Kris, went with him to his appointment today since I was stuck in a day long training for our Title I program. She and I brainstormed a bunch of questions about taking a chemo break, maintenance chemo and staying on the current treatment plan. It is so valuable to have as much information from as many different experts as possible because in all likelihood, Dave is going to NEED a break from all of this. He is also going to consult with the doctor he saw at Johns Hopkins to get her opinion too.
For now, we keep chugging along. I am one part relieved that the protocol that is working for Dave is going to continue, and I am two parts disappointed for Dave that he doesn’t get to have that normalcy he wants so much.