I met with my medical team and got a lot of information today – much of it very relieving, some of it new, some of it complicated:
The lesions on my spine have shrunk sufficiently from the inpatient chemotherapy that I won’t be scheduled for anymore rounds of methotrexate at this time.
I will also continue with the outpatient antibody infusions – the schedule for that is to be determined.
I will be starting to take an oral chemotherapy medication, Imburvica, which my insurance finally approved, which I will need to take daily for the rest of my life.
(This is different from “3 years and done” which we had thought was the plan)
Basically, until research discovers some other solution – and there is an extraordinary amount of encouraging research in this area- the “mother cells” of this cancer will always be present in my system – and I’ll also be immunocompromised both from the presence of the cancer and from the Imbruvica.
I’ll be monitored closely, with frequent scans which will gradually reduce over time to make sure that Imbruvica is working, and also watched closely for side effects such as excessive bleeding, infection, high blood pressure, etc.
As for the symptoms of nerve damage that remain – it will take time to assess if the nerves have been damaged and can heal or if they are dead – the doctor said it can take up to a year for that to be determined.
So: the worst and most terrifying outcomes seem to be off the table and it doesn’t look like this cancer will kill me or disable me in the short term.
I am much younger than most of the people who are on this oral medication – which means they expect that I’ll have fewer side effects to begin with – but I’ll also be taking this medication for a longer span of time than most of the others with CNS CLL so I’ll be watched closely.
I’ll take the next few weeks to recover, and get my strength back as well as to adjust to the oral chemo – which can cause some discomfort and dizziness to start with.
And then sometime after the New Year I’ll slowly start phasing back into my practice – although because I’ll be contending with new health concerns I will likely need to both adjust and reduce my workload.
The kids are incredibly relieved, as are we all – although there is new information to adapt to- we are releasing our fears of “getting worse” and embracing what it means to live life in a new way.
Just as we pass the darkest day and the light slowly begins to return.
To you and to all of us.