Phase 2 is over – and I am slowly putting myself back together. The last week was all the doctors promised to be – incredibly tiring, weak, frail, yet I was so relieved it was coming to an end. The effect of radiation/chemo will be with me for a while so it is not an immediate high and back to 100%. I have a whole month of March to do that and I can see why. But I will not step into any healthcare facility or doctor’s office for the next 30 days – yay!
My days are pretty straightforward. Sleep in as no radiation at 830 :-), try to stay on my feet for a few hours, doing some small errands, walk Ruby, watch a show (Newsroom and Marvelous Mrs. Maisel). Eat, read, then take a nap around 3 for an hour and up with the kids doing homework, resting. Pretty bland ah – but it will get me there. There are days when I sleep till noon, and days when I dont nap at all. So pretty variable. I am trying to balance the diet so I dont lose more weight which was always a by-product of why I am doing it. My clothes hang on me, everything looks like a bag after losing 20 lbs. Maybe there is shopping in the future for me – an unintentional nice by-product:-). I also feel some effect of the “chemo brain” which is a temporary fog that consists of short-term memory flaws, difficulties focusing and other small things. Last week I couldn’t remember the last name of this irrelevant actress and it drove me nuts – fortunately B gave me the look of “really? really? noone knows her name, only you would” – so relax. I know but I keep comparing everything to pre-December so I notice small things. I guess I will let the gossip brain part go, temporarily 🙂
I noticed that since I started wearing my head pieces, I am getting some interesting looks. Let’s face it, this is the cancer look – women with scarves however entangled or fancy those are – have become the chemo/radiation look. I get it. I haven’t gotten used to the wig yet, so should have expected it. It feels a bit like everyone is looking, sometimes giving sympathetic looks, sometimes just mumbling something like “oh shit”, sometimes just having questions in their eyes, not daring to ask. I lost some anonymity and privacy with this look for sure – and its like a second wave of “people finding out”. It doesn’t bother me that much – just dont want to be treated like a patient or sick person everywhere I go.
Last week we went to the American Brain Tumor Association seminar at the hospital, on Saturday. Yep, that’s how fun we are, as B declared. Most people go to soccer games or farmers market but we go to discuss brain tumors. Yahoo! My oncologist was moderating it and I always like to get up to speed on what is going on – so we sat through a medical and patient panel.
Here is what I learned:
- things could be SO much worse – no walking, no speaking, long term disability, glioblastoma
- even for the worse worse folks, they have been around for 10+ years (of course, the ones not doing well wouldn’t be here or are not around – but let me live in my bubble)
- the medical science is progressing incredibly fast, they are just checkmarking which cancers they can treat at this point… it truly is amazing. In 10 years they could crack this nut so hoping for no, or at least super slow, progression from now on.
- why am I the youngest one here? Maybe too crazy to attend this?
- I so should have gone to medicine or science – hung on every word of the pathologist and oncologist – it is like hunting this creature that is ahead of them a bit and winning or losing battles – expensive ones, mind you…
- not ready to be on a panel of patients or survivors yet, still too raw.
- OK, 2 hours is plenty, let’s get out of here – and have some fun !!!