I’m slated to get these scans done early march. That is, unless I ‘feel symptoms’. Simple, right?
There were three symptoms specifically that I noted just before my diagnosis last year: blockage (constipation, due to the tumor’s location in bowel area), a specific kind of dull back pain due to the tumor pressing on nerves (not unlike pregnancy I suppose), and fatigue. Put me down for 2 of 3 in the past couple weeks. I’ve been on edge as I monitor. For example in the past week I’ve slept 12 hours at least three times – unheard of for me except if I’m sick. The most troubling piece is that every time I stand up I feel this dull pain in my lower back/pelvis area. The only time I’ve felt this type of pain was last year just before my diagnosis. And I’m constantly feeling my abdomen for evidence of tumor. The other day I realized that this might be for naught. It occurred to me that since the tumor is now placed somewhat differently that perhaps it could be growing in different locations – perhaps more towards the back than the front.
These are not encouraging developments. But they’re also not quite enough to get me over the edge to expedite the upcoming scans. There are rational explanations. Lua (2 years old) has been having sleep regressions since moving her in with the boys (yes we did that a few weeks ago and it’s been mostly amazing, dumb luck I think). Anyway that might have something to do with the sleep/fatigue. For example last night I was up for two long stretches from 2am to 3:30. Also I’ve caught whatever has been going around recently from the kids – mild, but still. I’ve been exercising more to build up my strength and I want to believe that’s the cause of the back issues but I really don’t think so. I’m going to try doing more active stretching and light walking etc. to verify it’s not just a muscular thing.
Regardless of these explanations there’s also trepidation (I don’t want to say fear since that doesn’t quite resonate as I’m not deluding myself). I can tell that monitoring this is definitely eating up some mental cycles. I want to enjoy a few weeks of relative normalcy and minimal stress before very possibly jumping into more intense chemo/treatment. The thought of doing another biopsy in case of a poor scan is not palatable right now. Also, and it sounds trite to say, but we’ve had tickets to Hawaii since last year (I booked them just after getting my diagnosis) coming up end of April on Saul’s school break. We haven’t had a family vacation together in quite some time and it feels necessary. Recall our December family holiday was interrupted by my surgery.
I’ve emailed my doctor about this to see how he would think about it, the obvious question is what’s the downside to just doing it now? I haven’t heard back yet but to answer my own question: 3 months is not a long time as far as these things go, hence expediting would increase the likelihood of a false negative result (meaning that the scan doesn’t show meaningful progression because we didn’t wait long enough). That would not be good.
I’m trying to be honest about what I’m feeling, if only to convince myself not to be willfully blind about this. Obviously if this is aggressive then I’ll deal with it immediately. My trigger event at this point is that if these ‘symptoms’ persist or worsen for another week I’ll likely press the issue and move to expedite the scans.