Day 13 – Packed and Ready To Go   October 19th, 2011

I managed to eat a whole thigh and drumstick’s worth of chicken from the rotisserie chicken we had last night. Could not eat the skin because it was too spicy, but still a major achievement.

It was a pretty decent night too – only one wake-up for vitals and blood draws. I slept pretty solidly from around 11:30pm to 8:30am this morning. Using Toothelle Mouth Moisturizer to lubricate my mouth before going to sleep was a key part of the better rest I got. It’s a new thing one of my nurses suggested, and I’m glad she did!

I woke to learn that my neutrophils and white blood count had continued to increase since yesterday (not much, but a bit, since I was now off the Neupogen booster shots). Other than a slight deficiency in my potassium and magnesium (cured with pills in the former case, and my final IV infusion for the latter), everything looked good, even with my platelets, which had naturally increased from 21,000 yesterday to 29,000 today. That means my body is starting to heal properly!

Shortly after the magnesium IV infusion ended, my doctor came in to remove my dual-lumen Hickman catheter port. She was unable to just pull it out as my body had already started to form scar tissue around the cuff that’s part of the tubing (and is supposed to let the body’s tissues form a tight, integrated seal, both to reduce the chance of infection as well as to provide additional security from accidental tugs). So I got injected with lidocaine, and she then used a scalpel to free the cuff. The actual removal of the plastic tubing was a non-event after that. The tubing looked shorter than I expect. Krystyana and Linda observed the whole process, but Bas averted his gaze – he’s not into blood or sharp things penetrating human skin. In any case I now have a small bandage covering the original port site, which I will be able to remove in a couple of days. And no more port!

The process, however minor, did tire me out, and I have a little bit of pain at the exit site when I move my arm in certain ways. That apparently frees me from heavy lifting with luggage tomorrow or any other sort of overexertion involving my right arm and upper body. Time for Bas to earn his keep, I think :-)

Our TIL friend Jamie and her husband Jeff swung by to say hi – Jamie was having her one-month scans done this afternoon to see how the TIL with IL-12 treatment she received worked. It’s still a bit early to see definitive results, but we know she will be NED before long!

I managed a low-carb protein shake for a late breakfast, and then for a late lunch, wandered down to one of the cafeterias here at the clinical center. I managed to put down most of a Salisbury steak (which I had the grill master throw back on the grill for me to ensure it was hot enough), and Vitamin Water Zero (which only had a bit of flavor, but was refreshing nonetheless).

After that I was exhausted, and napped with Bas for over an hour and a half. Good snuggles and a good nap.

The girls had gone to the lodge to pack themselves up so they could be ready to go tomorrow, and then came back to pack me up. I sure have a lot of crap stuff here! Fortunately we are flying back on Delta to Boston tomorrow, where Linda, Krystyana, and I all have elite status, which means at least two free bags up to 70 pounds each per person (the benefit rubs off on Bas too). We need it, apparently :-)

Dinner was a daring experience – Chinese Food. I kept it simple, yet experimental, with foods that should all qualify as neutropenic based on their recent cooking temperatures): Egg drop soup (went down pretty well, although a bit thick), Crab Rangoon (went down best with the sweet sauce), boneless spare-ribs (were a bit spicy on the tongue, and had no real flavor to me – needed the sweet sauce too), and fried dumplings (couldn’t manage the dough, but the meat blob on the inside went down well with the soy-based dipping sauce). I only had a small bit of everything, and noticed how off the flavors were from my expectations due to my tongue situation. I tried a bit of hoisin sauce that Linda got with her moo-shu dish – the hoisin had real hoisin flavor to me, but also was a bit too spicy on my tongue. It was good to be able to experiment a bit though, as well as eat more solid foods than I was able to manage only a few days ago. I expect what I can taste and eat will be expanding every few days as my body continues to heal and mend.

I will add that Jamie and Jeff dropped off some mini-cheesecakes. I was able to enjoy several bites of those before becoming full. In retrospect they were the best (and most flavorful) part of my meal, and I should have started with them!

My sleep tonight should be uninterrupted as I no longer need my vitals taken, and won’t have any blood drawn. That will be awesome!

And tomorrow – my destination is my steam shower in Boston (it’s not really a steam shower, per se, but the water it produces is strong and hot, and can steam up the whole bathroom easily)!

Good night all, and thank you for all your support and words of encouragement and love – they have definitely helped me through the last three challenging weeks here!

Virtual hugs to you all!

 

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This entry was posted on Wednesday, October 19th, 2011 at 20:38 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.

12 Responses

October 19th, 2011 at 21:08
Jessica Says:

Jake, such great news. You’re seriously on the mend and nearly out of the hospital for a while. Yeah!! *hugs*

October 19th, 2011 at 21:57
Barbara Leary Says:

WOOOHOOOHOOOO!!!!

October 19th, 2011 at 21:57
dara Says:

Yahoo!!!! Yahoo!!!
Cellllll-ebrate good times, come on! do-do-do-dodo-doooodooot-doot Let’s celebrate!

Celllll-ebrate good times, COME ON!!!! Let’s Celebrate!
There’s a party going on right here
a celebration to last troughout the years.
So bring your good times and your laughter too

WE’RE GONNA CELEBRATE YOUR PARTY WITH YOU!!!

Come on now

celebration

let’s all celebrate and have a good time

celebration
we gonna celebrate and have a good time.

It’s time to come together
it’s up to you
watch your pleasure

everyone around the world
come on
Yahoo!
Yahoo!

CRANK IT UP!!!
http://www.youtube.com/watch?v=3GwjfUFyY6M

I’M DOING A HAPPY DANCE FOR ALL OF YOU :-)

October 19th, 2011 at 22:20
LaDonna Says:

I am so happy….I just cannot stop smiling :) See you soon!

(((HUGS)))

October 19th, 2011 at 23:38
Steve Smith Says:

Great news, Jake.

So happy to hear your headed home.

-Steve

October 20th, 2011 at 02:07
dad Says:

What should extremely happy father say? Just to remind you that a good Schweinhaxe is waiting for you in the freezer in Boston! :)))
Happy return hometo you and the gang!

October 20th, 2011 at 02:55
Roy Says:

Wundershön, Gute Heimreise

hmmm lecker Schweinshaxe!!!

to NED :-)

October 20th, 2011 at 08:04
Angela Says:

Safe travels and to NED!

October 20th, 2011 at 08:39
Denise & Teddy Says:

<3 Hugs

October 20th, 2011 at 09:18
Rebecca Says:

Big homeward-bound hugs all around! Safe and gentle travels to you all,from your buds at AMS.

October 20th, 2011 at 10:31
Cynde Says:

Jake, best news to hear first thing in the morning. By now, you are probably “on your way”…I bet Boston will be a welcoming sight…enjoy that steam shower. Get plenty of rest, and let us know when you hit home!

Safe travels, and to NED!!!!

Thanks for letting us be part of your journey, and cheer you on from the sidelines! GO JAKE GO JAKE GO JAKE!

Hugs and Love,

Cynde

October 20th, 2011 at 10:37
Ann Says:

Wonderful news Jake! Kudos to you all for enduring this tough 3 weeks! Onward and upward on your road to NED! Thinking of you all.

Hugs and love,

Ann