Day 8 – Not Quite As Boring As Yesterday   October 14th, 2011

The doctors here say that boring is good. Alas, today was not quite as boring as yesterday. It started with a low-grade fever at dawn (38.4C/101.4F), which resulted in my taking Tylenol as well as being put on an IV drip with an even stronger anti-biotic than I have already been getting.

When the morning doctor rounds took place, I was informed that my platelets were at a very low 9,000 per cubic millimeter (normal is 140,000 and higher), exposing me to potential problems with respect to bleeding. Considering that I had bloody sinuses during the night, this was a bit scary. I was also told that there was still no measurable sign of any neutrophils in my blood. Maybe tomorrow?

I was given five units of platelets, and stayed on my IV most the of the morning. Getting another CBC (complete blood culture) this afternoon showed that the platelet infusion has bumped me up to 17,000. Much better but not great. So I’m getting another five units right now as I write this.

The fever has been gone since this morning fortunately, and I had a pretty good afternoon. I even had Linda take me out for a slow 15-minute walk around the clinic. Pretty tiring but it felt good to be moving. The rest of the afternoon was a nap-fest all around. I am coming to appreciate naps more than ever before. Naps are good!

The dry mouth is still a plague, although I have found that I can manage chicken and beef broths as my main forms of sustenance – they are among the least difficult foods to process as they minimize stringy mucous build-up, and cause the least mouth pain. I even managed to get some minced, steamed (over 165F because of my neutropenia) roast beef into me last night via the beef broth, which made my body happy (protein!). Warm herbal teas – blueberry and raspberry – are good too. And Hall’s Sugar Free Citrus Drops are helping a bit too.

I’m also coming to grips with the stubble on my head and face. The lightly-adhesive lint roller is coming in handy, but I still keep having tiny stubble hairs come off in my hands, shirt, pillow, etc. I will be glad when all the stubble is gone, so I can have a real Mr. Clean look, shiny head and all. I like that comparison (thanks Sam!) better than the Telly Savalas or Yul Brunner look.

I’m hoping for no fever overnight and the start of measurable neutrophils in the morning, as that would indicate my body is finally starting to make progress after the necessary destruction to my immune system caused by the chemotherapy and radiation.

Linda and the kids have been wonderful to have around to give me comfort, support, germ free hugs, and ruffles. I have no idea how someone without such a support network would handle this process. So, again, thank you Linda, Krystyana, and Bas. I love you all!

 

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8 Responses

October 15th, 2011 at 04:03
Dad Says:

Have a nice weekend, Jake, no pain and fever. Today we are rembering that wonderful dinner in Chinese restaurant in Boston three weeks ago and that tiresome walk back to your apartment, when I suffered as an old man and you were leading the crowd. I am finishing a video from that evening and will post it soon.
Do you eat also some solid stuff besides the soups and little pieces of roastbeef?
Tak a good rest and walk around the clinic, from my experience this is good not only physically, but also clears the brain.
Love and —- to NED!

October 15th, 2011 at 10:42
Jarmila Richter Says:

Linda and Jake,

I am very grateful for leting us know every day about Jake’s progress. The low points will pass in time and I cross my fingers for recovery.

To NED!
Love, mom.

October 15th, 2011 at 12:13
Cynde Says:

Jake,

Thanks to you and Linda for the updates. I check daily to follow your journey and progress to NED. Glad you’ve found broth that is a bit more palatable (or at least goes down better). Remember, you are Poseidon, and your TILs are still slashing down cancer cells…takes a toll on the body.

Hugs, love, and wishes for the stubble to be gone soon.

Hugs to the Jake Caretakers as well…

Cynde

October 15th, 2011 at 13:45
Carole B Says:

Hi, Jake, Linda, Krystyana & Bas! Hope all is well today compared to yesterday and that the platelets are soaring to the skies for you! You are one hell of a strong and brave dude, Jake. Bless you & your family for fighting the fight and not surrendering to this ugly-butt disease. Here’s to NED!!! Hugs, CArole & Joe

October 15th, 2011 at 14:06
dara Says:

If I remember correctly, Mr. Clean wears a small gold hoop earring :-) Maybe a clip-on jewelry contribution is in order!

The Food Chemist side of my brain keeps wishing I could create a solution of encapsulted simulated saliva beads that could be stirred into food to ease the dry-mouth problem. Maybe I should switch my field to medical foods! I am surprised that shakes or smoothies are not on the menu, but maybe everything must be heated to a sterile temp before consumption. But what about things that are highly nutritious and already commercially sterile like ensure….?

Hoping that the neutrophils make their debut on stage today and that all of the other cast members give a stellar performance in your rendition of “The Road to NED”!

Happy napping (napping is good for the caregivers too!) ;-}
Love to all, Dara

October 15th, 2011 at 15:24
Meryl Says:

Thanks for the update Jake…although I can’t see you through this screen your words sound strong…keep kicking butt. Love to your great support staff as well…

Xxoo
Steve and Meryl

October 15th, 2011 at 15:28
Denise & Teddy Says:

Let’s see, up from 9000 to 17000 – 89% increase is good :-) The engineer in me would be graphing the data. We are all cheering on the neutrophils, waiting for their grand appearance.

Jake, Linda, Krystyana, and Bas, big hugs to you all.
To NED

October 15th, 2011 at 15:56
Ann Says:

Hi Jake, Linda, Krystyana and Bas,

Hugs and love from us. We like your new look – it’s right in fashion for the season as the leaves are turning and also falling here in Colorado. We are wishing you good energy and sunshine as you go through this journey. It’s good to see you and you look strong – not only from your new look – considering the medical treatments and changes you still have room for your wonderful smile!

We are thinking of you.

N.E.D. N.E.D. N.E.D. Happy N & N (neutrophils and naps). Go – TEAM – Go!

Love,

Ann & Bill