One thing I can say for certain, the cancer journey is anything but predictable. I had all of these plans made based upon when my chemo dates would finish … and now things are going to get crazy again.
My first appointment this morning was with radiation oncology. I saw a resident who was clearly new and needs a fair be more practice at taking histories and listening to patients. He also needs some work on empathy. I am left thinking, how do you teach those skills? I don’t know, but this resident – although clinically wasn’t bad – certainly needed to work on the skills of engaging the patient – but also on things to say and not say to someone on the first consult to radiation oncology!
When the attending oncologist came in, she began by asking us where we were from and a little bit about us. She introduced herself not just to me but also to my husband. I found myself thinking that the resident really needs to watch the oncologist (perhaps some role modelling) to show how to developed a rapport with me before starting to talk about the cancer. Her synopsis was, given the information they have from my pre-chemo MRIs, and the fact that I’m planning on a bilateral mastectomy, that I most likely will not require radiation. There is the obvious caveat that if the post-surgical pathology finds something, then that assessment might change – in particular if the pathology shows lots of cancer or a specific type of tumor/tumor remnant, then radiation might be warranted. But at this point, the MRI is not indicating that. Yay.
I should also mention that the resident also did a thorough exam (clearly he was pretty new to this as well – still getting his feet wet) – anyways, he examined my breasts both in the seated and laying down positions – and couldn’t feel anything in either breast, and nothing on the lymph nodes. So, he confirmed that I have no clinical signs of cancer. Again yay.
Then I saw my oncologist. My blood levels are still declining, but they aren’t low enough to stop chemo or transfuse. With Taxol, I’m experiencing annoying side effects. Again, not bad enough to stop chemo, but enough to be a concern. However, given the lack of clinical signs of cancer (my oncologist also confirmed that he isn’t feeling anything), that we COULD stop chemo and ‘pull the trigger’ on surgery. That it is my choice.
Part of me has a knee-jerk reaction – I have everything planned out. I have a trip to Ontario booked to see family, I have a trip to Hawaii booked for my breast memorial. All this is based upon finishing 12-weeks of Taxol and have surgery after that.
Now, if we stop chemo, then we still wait 4-6 weeks for surgery. My body needs time to heal from the chemo (and honestly, I could really use a break right now). My blood counts needs to recover before I can contemplate surgery. But I am encouraged also to have surgery as soon as feasible, because the cancer might not be completely dead. So if it isn’t, we don’t want to allow too much time … surgery needs to happen as soon as it is safe to do so (4-6 weeks after chemo).
Part of me is feels OK with this. I don’t like the idea of stopping chemo because of side-effects, but stopping chemo because we think the cancer is dead and there is no reason to continue the chemo – that is a good reason to stop it.
I don’t want to just stop though – I cannot have today be my last chemo day – I need a schedule that says it is my last chemo day – I need to hear the chemo nurses sing the chemo song (they sing to you during your last treatment). I need that in order to feel that it is done.
So, now I go through reasons why I should stop the chemo – one reason really – side effects. The neuropathy and cognitive disassociation (chemo brain) I’m feeling. The longer I’m on taxol the higher chance these effects can become permanent. In most people, the side effects end within a month or two of the chemo ending, but for some people it is permanent. So the longer I’m on, the more likely there would be long-term damage. That isn’t good. It is a good reason to stop the chemo, even if the cancer wasn’t responding … but given the cancer is responding, it is a pretty compelling reason to decide that I’ve had enough of the Taxol.
But then part of me says, but you had a plan … Another part of me says, you always knew the plan might need to change … part of me is jumping up and down with joy – this really is the best outcome we could expect.
And so this week and next, things will get really busy. I will begin with an MRI which will help to confirm what is happening with the tumors. The MRI is the best evidence the surgeons will have, and will be the best evidence I will have. I’ll also push to get the CT of my belly ordered, as that information is needed for plastics. Once the MRI and CT results are in, I’ll meet with both surgeons (breast surgeon who does the mastectomy and plastic surgeon who does the reconstruction) to go through the surgery and dates will get set! I expect lots of appointments in the next few weeks!