All right! The long-awaited oncology appointment is done and went pretty well, and although we have a short-term plan, we still don’t know exactly what the long-term plan is, but that’s OK.
First of all, I really liked the oncologist and I felt like he was a good match for us. All of his information was based on recent evidence and he had sound reasoning for all of his suggestions.
The plan is to do a scan 2-3 weeks after the baby is born, either a CT or PET scan and an MRI, to make sure there is nothing else hiding out in any organs. After that, we’ll use the information from those scans to inform the decision about the next step, which could be interferon, as we had suspected.
The really good news is that he is using a recent study that showed little difference between the one month of high-dose interferon followed by 11 months of low-dose, and just one month of high-dose. This means I would only feel like I have the flu for a month instead of a year. This is a HUGE deal, especially since that will be a year with a newborn. So that’s very good, should we decide interferon is the right next step for us.
Also good news is that Kaiser has a relationship with University Hospital, which is a local research hospital, that means I might be able to participate in clinical trials they may have going there. This is also good because I had thought with Kaiser I was limited to the resources available through the practice. If I qualify for a clinical trial, that might also open up more options for us for treatment, etc.
The doc was also very sensitive to breastfeeding as well, and is going to look into the implications of everything we talked about and the possible impact on breastfeeding. My position is that I would very much like to be able to, but I’m not going to turn down or delay a treatment that could help me because of it. From what I’ve been able to find out on the internet (from reputable sources), it looks like the PET/CT scans should not interfere long-term with breastfeeding (there will be a certain amount of time after that I can’t but it’s only a few hours, it looks like). The interferon, of course, is the bigger question at the moment.
The ENT appointment was easy peasy; basically, everything is healing well. Peter has noted that the scarring already looks better after just a few days of massage, so I’m definitely going to keep it up.
I have to be honest… the oncology appointment was harder than I thought it would be. I cried a lot during it. Even with no real new information, it was just a reminder that this is real and I can’t be in happy denial about it all the time. It’s been relatively easy to focus on the baby coming and ignore the other stuff, but appointments like these unfortunately bring reality back to the fore.
(An aside: I can’t imagine having his job. He was very good at it and empathetic, but I could tell he was less touched in such an obvious way by our crappy situation than other doctors have been, which I think was a very good thing. If he deeply felt all of his patients’ situations, there’s no way he could go on. At the same time, though, he said he has a 10 month old at home, and so definitely empathized with us and seemed to have a very good perspective on exactly what it takes to care for a new baby, on top of the treatments I might have).
But after sleeping on it, I’m feeling like I’m close to being back to where I was. That is, focusing on baby, feeling positive about the future and treatment, and not worrying about possibilities.
Baby will be here SO SOON that we really HAVE to focus our energy on that right now. She’s due Tuesday, we have our next OB appointment Monday, although I haven’t seen any changes in anything. I can’t believe how quickly the past few weeks have flown by, even though I feel like I have done NOTHING (which, I guess was the point? Still feels weird). The great news is that my stamina is definitely up from where it was, by a LOT, so I now feel like I will be able to at least labor for a decent amount of time, if not the whole thing. So doing nothing seems to be working! And Peter and I are well aware that this may be the only time in our lives we can do this, so we are trying to enjoy it as best we can. BABY! SOON!