Okay, I realize the last two posts were kind of grim.
I hope I don’t have you worrying too much, things are significantly improving.
As I mentioned, I arrived at Princess Margaret with Mediastinal Masses – over 9cm in size.
Initially, they didn’t respond to the steroid therapy how the Doctors would have expected, that was a bit concerning.
Then, chemo fucked them up.
My first round of chemo brought them down to below 4cm, that’s really exciting – I’m working on getting the pictures of them.
It was 6 doses over 3 days with two heavy doses of the gnarly chemo after, that kicked the tumors asses apparently.
My blood counts bounced back well, and I seem to be avoiding infection and am on track for B phase of my chemo this week.
Essentially, I feel really good right now – almost completely healthy other than a bit of fluid swishing around my lung.
I might not be feeling this good on Wednesday, depending on the chemo my counts will probably drop, I’ll be really tired, not very hungry anymore and a bit of a moody guy.
So right now, I’m taking advantage of my feel-good moments
Eating as much as I can (sorry mom, you’re still going to be running for food)
Taking visitors (in moderation)
Just trying to enjoy the good days in here – making the best out of the situation is really important, I’m not sure other patients focus on that.
It can be a hard thing to do I suppose, between juggling the emotions and stress of having such a disease, but looking forward and focusing on what’s good is so important.
For me, that’s good food right now.
Eating a damn good meal is pretty much all I think about.
It’s really easy to get swooped up in focusing on remission rates
Nitpicking the percentages of survival, worrying non stop about your health in here — That makes sense to worry it’s a human response.
Though life is just here throwing shit at you, and you either take what you have and make the best of it, or you let the shit hit you and beat you down.
My goal is to try to make the rest of my experience as an inpatient here as close to being at home as possible.
Why not right?
Basically, my advice to anyone who needs to spend extended time in the hospital is the following
- Eat the Hospital food if it appeals to you, but order a fresh fucking meal every once in a while – treat yourself
- Make rules in your room, don’t let people linger if you don’t want them to, kick your parents out if they’re getting on your nerves (steroids get you irritable its okay) enforce your rules.
- If you want to eat, eat. Just eat, seriously don’t deprive yourself it’s not worth it.
- Focus on the good parts of being here, try to find a way to relax while in bed – this is probably the hardest part, I can’t offer too much advice here it’s a pretty personal issue.
- Organize your room – if you have your own space, get it organized and functional for your needs, your comfort levels will increase significantly.
- This is probably the most important thing – DO NOT take the burden of other peoples emotions upon yourself, allow me to explain…
You are going to have visitors, some of which may be distressed to see you in your current condition, some of which may not know how to react.
That is going to be the hardest part – it’s why during my worst weeks, I tell people to stay home – even my parents some days.
Seeing their reactions to your health, seeing them stress, it’s going to make it harder for you.
So set rules, ask someone who can help regulate, a parent, sibling, best friend, someone you trust to just vet your visitors if you can’t do it on your own.
Spending 2 hours with a guest who is clearly stressed is like running a circus when you are sick, it is easily one of the most exhausting things you can do.
So yea, try and avoid that.
Not that any of my readers would need that advice, but maybe it can offer some perspective.
So yea, July 2nd, Canada day weekend, a couple days out from my second round of chemo.
CT results are good, My blood counts are good, I don’t know if breakfast is going to be good yet, it’s only 7:15 but we will see.
Hopefully in the next few days I can get some copies of my CT Scans to show you guys.
This blog is so wordy, I want to get some imagery up here.
Until then, thanks for reading
Happy Canada Day Long weekend
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