Day 3 – Slow Recovery   October 9th, 2011

After Linda and the kids left last night, my plans for a restful night kind of came to a close with the introduction of a high fever and chills. The fever lasted most of the night and finally broke this morning. I kept telling myself that fever was a sign of the on-going battle of TIL vs. evil cancer cells, so in a way it was a good thing. And my doctors later confirmed that probably was the cause too.

However, it should be noted that the TIL attack is something that goes on for weeks, and it’s generally not clear until the second of post-treatment scans (which would be early December) of how well the treatment works. So feeling tumors from the outside to see if they have gotten smaller is something of a pointless exercise, at least this soon after the TIL was administered.

From the comments that Linda’s post received yesterday it might not have been clear that the 5kg of water weight I needed to drop was to ensure proper organ function, as much of that weight was in my organs (such as my lungs), and not any sort of vanity. I’m close to half-way there, and my lung capacity seems to reflect that.

The other side-effect of treatment that has been increasingly frustrating is that I have “dry mouth“, meaning that my salivary glands simply don’t turn on. So, to eat most things that don’t have a thin gravy of their own, I have to keep my mouth lubricated with water in between bites, and sometimes combine the two. That turns something like a protein bar into mushy cereal – not a great texture sensation.

A related symptom of this whole dry mouth situation is that my ability to taste has gotten terribly screwed up. Certain foods have no flavor (like Chef Boyardee single-pack macaroni and cheese – though Linda says it doesn’t have much flavor to start with), foods that should have quite a bit of flavor (Chef Boyardee single-pack Beef-a-Roni) are bland, while for other foods, even a few flakes of black pepper can make the dish inedible. I can taste sweetness to some extent though, so I’m thinking once I’m back in Boston I may have to work my way through Ben & Jerry’s collection if it looks like ice cream is edible to me.

I also learned that the carbonation from carbonated beverages is actually painful to my mouth.

I have some various dry mouth rinses, gels, and sprays – all of which work, but only temporarily, and being a mouth breather, things get dried out pretty quickly.

Hopefully my salivary system and tongue will heal up soon enough (it could be months) and I can start enjoying food again as opposed to having it be a torturous necessity for survival.

Perhaps I should be glad that this is the only side-effect from treatment that has clearly manifested itself, as I’ve had virtually no nausea (although in part that could be contributed to by the thrice daily infusions I get of Zofran), and while my energy levels are low (lots of naps), I don’t seem to actually be suffering from extreme fatigue (again, knock on wood). This may still change, but I’m hoping it doesn’t.

Today has been mostly spent connected to my IV drip system, first getting potassium phosphate to replenish my electrolytes (a four hour drip), then followed by two units of blood (two hours each – just finishing my second unit now) to boost my hemocrit and hemoglobin counts. I may also get more platelets tomorrow.

The family was with me most of the day, and during the points I wasn’t napping we took advantage of the rather decent WiFi connection here to watch a couple of streaming TV shows from Amazon (and yes, I have an Amazon Fire on order :-) ).

They (the nurses here) expect I will be under their care for another ten days or so, so my immune system can get built up enough that I can safely (with face mask on) travel back to Boston for a couple of weeks before coming back down for my first post-treatment scans in early November.

One ambling day at a time…


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This entry was posted on Sunday, October 9th, 2011 at 20:56 and is filed under Health. You can follow any responses to this entry through the RSS 2.0 feed.Both comments and pings are currently closed.

4 Responses

October 9th, 2011 at 22:06
LaDonna Says:

big hugs! I wish there was more I could do or say to make this journey easier…..just remember I love you! Andy sends hugs too!

to NED!

October 9th, 2011 at 23:12
dara Says:


So glad the fluids are moving out – especially from your lungs! What a relief to hear this news! Here’s hoping the salivary glands heal rapidly – I can’t even imagine what it’s like and wish you voluminous salivary flow (touch wood!) I would be happy to collect Spooky Spit and send it your way; all I have to do is say ‘biscuit’ and you’d think someone turned on a faucet in his mouth. Okay – that was gross, but maybe it got a smile out of you! Hang onto the sense of humor, however morbid or dark; humor helps healing.

Tell us a little about the requirements to keep germs at bay – I too would have expected the requirement of a hyper germ free environment (and family :-)

Hugs, Dara

October 10th, 2011 at 08:31
Denise & Teddy Says:

I never would have seen you as a Chefboyaredee connoisseur Jake. Wishing you the enjoyment of Ben and Jerry’s soon soon soon.
… more hugs to you, and

October 10th, 2011 at 12:43
Judy Workman Says:

Jake, Soooo glad this weekend is over for you! I’m praying for you to regain your strength and energy as quickly as you’ve attacked everything else. I’m sure that extra fluid is already gone (pee-meister) and that will definitely help with your comfort level. You’ve surpassed all expectations through this process, as a warrior will. Beating the odds–to NED!