As many of you know, I have been on a break from treatment since returning from Boston at the end of August. We recently met with our medical oncologist in Winnipeg to discuss the possibility of doing 6 more months of chemotherapy. This was the first time we sat down with a medical oncologist in Winnipeg. I arrived to my appointment in a wheelchair because the peripheral neuropathy has been so bad in my hands and feet. The first thing the medical oncologist asked me was, “What do you know about Medullablastoma”. I told him how it was a paediatric tumour and is very rarely found in adults (about 3%). So there is very little data on successful treatment plans for adults. Doctors therefore go off what has worked for kids which is typically; the operation, radiation, then chemotherapy. In doing so, they have found that there has been a huge question mark on whether or not the chemotherapy has made any favourable differences in adults.
Once the doctor knew we had a good understanding, he asked me if knowing what I know, where do I stand on receiving six more months of chemotherapy. We told him that if this was a couple months ago, we would probably just go by the paediatric data and go with the chemo. But because of my current state of not being able to walk and the lingering peripheral neuropathy, it was hard to see myself putting my body through a harsh regimen of chemo that had no scientific proof of being effective in adults, and would only weaken me further.
The doctor quickly agreed and said if he gave me chemo and I ended up in the hospital, he would never be able to justify why he gave it to me in the first place. It quickly became clear to Paul and I, that it was unanimous: the decision would be no additional chemotherapy.
So where does this leave us now? I am working at getting stronger, by eating lots and exercising. The neuropathy has almost completely left my hands, and it has gotten much better in my feet. However it is still lingering and has impacted my motor skills so walking continues to be very difficult. I continue to work out my muscles so that once the neuropathy is gone and my motor skills recover, I will be able to walk sooner than later.
Since my operation was very successful and they were able to remove the entire tumour, and I have completed treatment, the doctors will monitor me by scheduling regular MRI’s. Since the doctors have no definitive answers with this type of cancer, they will continue to monitor me over 5 years by scheduling an MRI every couple months the first year or two, and then eventually yearly.
My first scheduled MRI will be in December. I am continuing to believe in my healing and I thank God everyday for all my blessings. And yes – I will be throwing myself a party every time an MRI comes back negative and the doctors tell me, there is no sign of anything. For now I enjoy being with these 3 crazies, Paul, Ruby, and Phara – they take the best care of me. Thank you again to all those who continue to message me to encourage me, you’ll never know what it means to me!