A little catch-up first
- While I was going through my second round of chemo, which was a doubled dose version, the nausea was stronger as well the feeling of weakness. It was still very manageable though.
- Belmont had her surgery and has since had all her stitches removed. She’s doing okay, although she’s supposed to take anti-histamines for life to help prevent the growth of mast cell tumors.
- Got a sweet hair tattoo shaver and had been working on some designs (which were pretty bad).
During the past month Alex was doing some investigating on the differences between the Davis Center where I was seeing my docs and the UF Health Cancer Center which is right down the street from it. There was no clarity to be found through the websites, and of course the doctors never discussed with us the differences and why we might want to choose one over the other. Luckily Alex works in the communications realm at UF Health, and she asked some colleagues what the differences were, since there didn’t see any public information about them. The differences were explained (a normal patient would never know), and her colleagues went as far to find a specialist outside the Davis Center that we have now started to see. I’m very thankful for that intervention, but it still highlights glaring problems with patient communications, all the way from content on their websites down to how doctors communication to you. One day we may end up moving over to Mayo Clinic in Jax…UF Health is walking on a tight rope with us at this point.
With the help from Alex’s colleagues I met with a new neuro-oncologist who specializes in the kind of cancer I have. He spent a good amount of time explaining things to me and before me asking questions he had answered them. Main points:
- He said I should think in terms of year(s) not months. This was said with a straight face and very quickly so it took a little bit to sink in. This is obviously the best news and most optimistic I’ve received from a doc.
- Apparently the 3rd round of chemo I was going to be getting was not enough for my condition. So that was caught and I’m now taking even more chemo. Yummy!
- My original docs said I’d get scanned every 6 months for tumors which I was very worried about since they said the tumor they removed looked like it had grown in just 2 months. Most hospitals that treat Glioblastoma run scans every 2 months, and the doc just stated that he’d want scans every two months.
- UF in the near future will be running some studies on Glioblastoma, but there’s not enough info to know when and if I’d even be able to apply.
So at this moment I’m on my 3rd day out of 5 for the month taking this increased chemo. I’m feeling much more nauseous this time and am feeling like eating just about one meal a day. Thinking about drinking water is even making me feel sick, which isn’t good for my GI probs. I’ve been told that the meds for nausea that I’m taking are some of the best, but if that’s so I’m unhappy it and will be exploring other alternatives. How much I’ve been sleeping has also increased while taking this stuff. I’ve been sleeping almost to 4pm on some days.