Because being tired is tiring!

It’s 2:09 as I start this blog entry and I feel like I’ve spent days getting to where I am today! Being unwell takes a lot of energy and I feel like I’ve expended all of mine at this point in the day. I woke up at 6:45 this morning just to take my anti-nausea pill – ondansetron – before taking my chemo pills – temozolomide – half an hour later; I should have just stayed awake, but climbed back in bed with Antonio until it was time for the temozolomide.

When I did finally awake, I had to rush to try to make it on time for my radiation appointment at 8:15. I was 15 minutes late and as a result, had to wait for almost 30 minutes before they took me.

The radiation was uneventful – climbed up on the table, had the mask put on and listened to the whirl of the machine for about 10 minutes. The guys who did the radiation were very nice to me and asked about my weekend plans (nothing radical – just resting pretty much with the exception of brunch on Sunday with Marc Martin and perhaps Carlos and Miguel and Ronny along with Antonio!) The radiology intern, Anthony, has a “hot date” Saturday evening. Maybe he will report about that on Monday.

From radiation, I hustled down to the outpatient testing center and had blood drawn and then rushed off to a Physical Therapy evaluation with Andrew Hubregsen an hour long evaluation to test my strength, stamina and balance. Andrew asked lots of questions about when things started and how things have been going. On the one hand, I understand the need to recount the story over and over again; on the other hand, I wish the NYU online (My Chart) system had a place to record it all so that I didn’t need to expend the physical and mental energy multiple times. Turns out, I have deficits in all 3 areas – strength, stamina and balance – and the goal is to get me back to “normal” ASAP.

I then set up a series of appointments for PT starting next Wednesday and will be going every Wednesday and Friday until early July for now – let’s see how far I get in that time. (In the meantime, I need to reach out to the Wednesday and Friday volunteers who will be affected by these new appointments – it may be best for them to meet me at the hospital and just help me to get home after the appointments.)

A big complaint about what I wrote above. On the one hand, I understand that NYU Langone Medical Center is a HUGE operation. There are 25,000 employees in 27 Departments and 30 Divisions. But I keep getting calls from each team I will be working with to check in on me and ask questions related to finance and my health. Much of this is appreciated, but I need a fulltime person to coordinate all of this for me! To my friends in Europe – is it this bad where you are?

I continue to be frustrated by the team that built this blog – I was hoping to be free from them by now, but I still have to reach out to them almost daily to help fix the glitches related to people signing up, getting acknowledgement about posts they make, etc. Sorry about these glitches! Please be patient!


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3 thoughts on “Because being tired is tiring!

  1. Just know I am reading your blog and rooting for you from the lovely state of Oregon. You are a national treasure and you are receiving all the support you have because of that fact! Hugs and more hugs.

  2. Oh I wish the system were smoother for you. I don't quite understand why they build Patient Portals and then ask the same stuff over and over...and then the Portals don't work either. So with re: to your blog...hey, nothing on line is guaranteed except that it will be f---d up. I love you dear...this is really small peanuts...most important is that you get better and stronger fast! with lots of love from waaay out west!

  3. You are in the beast Alan. Brave new whirled. That treatment room is Star Trek. You are the explorer bringing back news of Sustaining Your Self through the onslaught. Courage! Keep us with you. Love...from The North.


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