Today, I met with Dr. Andrew Chi, the neur-oncologist as well as Jessica Schrafick the nurse practitioner from Dr. Golfinos’ office. Antonio and Susan were by my side for Dr. Chi where we spent the most time and got the most news. Dr. Chi and his team will be taking the lead from here.
Just when I thought I was “out of the woods,” the news is not so perfectly wonderful. Part of that has been my own “denial” about where I am: I have focused on all of the good news and have not really fully taken in the reality of my situation and the brain tumors. The pathology report analyzed the 2 tumors, glioblastomas, and on a scale of 1 to 4, where 1 is benign and 4 is aggressive with cancer, my tumors were both 4! And although they took them both out to the roots, there may be traces of cancer still there and that needs to be dealt with. Bottom line: I need to have both radiation and chemotherapy. That’s the badnews. On the plus side, the tumors did not appear to come from anyplace else in my body (such as my lungs) and this treatment should ensure that nothing comes back – AND, while there will indeed be side-effects, given the kind of focused radiation and oral chemo, I should not be completely wiped out or devastated through the process. I have an appointment next week to set up the process with Dr. Joshua Silverman (no relation) and once I start – likely the week of May 16 – the radiation will be 5 days a week for 6 weeks along with the chemo and then 6 months of just chemo, though that just means a pill each day. The side effects should not be too harsh – seems that 95% of people tolerate both radiation and chemotherapy well – but that remains to be seen.
Other things we talked about:
- The reality of my being tired a lot is normal given that I had major brain surgery: a double craniectomy, opening my skull for the removal of the tumors on both sides.
- I need to continue to take my meds for now, at least until the swelling is fully down in my brain – these, especially the steroids, have side effects related to my being tired, not having much libido, skin breakouts, being gassy, etc.
- I still need to hold off on taking my “regular” vitamins for a while, until after things return to more normal.
- I have been suffering a bit at night from urination issues and this is probably related to the catheter I had for surgery and the day after. This should subside over time, and I need to monitor and report to the doctor about it.
- I need to strike a good balance between not doing too much and not doing too little – activity is good overall, but not to the point of exhaustion. And I do need to limit the amount of weight I lift.
I will start acupuncture tomorrow, but if I am not happy with the therapist, I may switch over to the NYU Integrative Health Services where they offer a whole range of care, including acupuncture and physical therapy. On the PT side, it was recommended that I start with a physiatrist, a doctor who assesses strength and coordination and makes recommendations from there.
One of the things I am upset about, but which I realize is my reality, is that trips to Fire Island will be limited to weekends at least until after the radiation. And while I am not happy about that, it is something I need to just “give in” to and accept. By end June, the radiation will be done and I will have plenty of time to chill during the summer weeks in my little piece of paradise.
I spoke with my Dad to give him the news and he was, obviously, not thrilled. He underlined that he cares for and loves me and doesn’t want to upset me, yet he misses me and wants to see me and didn’t quite get that my trips to Fire Island are different than a trip to Maryland, this in spite of the double travel time and the reality that being at the beach surrounded by nature and the beach together add up to a very different kind of healing energy than being around a lot of people – or even just him and Florence – in Maryland. We hope to get there for a quick visit next week before the radiation starts, since once it does start, it will be a while before I can again make that trip.
So, the journey is far from over – I had some delusions about it almost being done and ending my daily updates, and I do hope that if not ending them, I can go down to just occasional briefs; in the meantime, the updates will continue – and yet again, I offer to take you off the list if these are just too much information for you. I will not be upset or insulted if you prefer to be taken off the list.