Greg, How Are You?

The Days

So, what are you doing?

by on May.19, 2012, under The Days

Drugs.

Come now, don’t be silly.  Tell us what you really do.

Drugs.

Nurses are pushing them on me or I’m begging for them.  Adjust your creatine, adjust your magnesium!  Step right up, prevent graft vs host disease.  Pain relievers.  Get your nausea suppressors!  Vitamins.  Fever suppresion.  Protect the liver.  Deliver lipids.  Accelerate cell production.  Ward off rashes!

When the drugs are working I’m so full of thankfulness and when they’re not I am laid out flat or curled up fetal.  Or wretching.  Or having the shakes so hard I fear for my teeth. I spend hours just holding still because moving or talking may bring on a fit of nausea.  Go to my happy places.  Meditate.

It’s day +9 and they still don’t know why I’ve had this fever for three days.  Fever symptions are nearly as bad as nausea but it makes me stupit.  I know the temp is down a bit now because I’m writing!  Also, don’t have icebags in my armpits and I’m not trying the sweat off my skull.]

Thanks for all the love, peoples.  Some is here in these comments and some by mail, all good.  Thank you.

6 Comments

And

by on May.16, 2012, under The Days

 

Fever 39.4 C.   My eyeballs are too big for their sockets.

And….

This…

Too…

Shall…

Pass…

6 Comments

By The Numbers

by on May.13, 2012, under The Days

 

Can I have a visitor?  Can I leave my room?  Am I progressing?  Do I need blood?  Are my kidneys safe?

The numbers that rule my life come out twice a day.  The main draw’s always at midnight.

Whites 0.1 on a 5.0 scale.  Very vulnerable right now.
Hematocrit 27.2.  I don’t get transfused til I’m under 25 which is most days.
Platelets 40 of 150.  “Don’t blow your nose” when under 50 they say.  20 is the trigger for a fresh bag

Other numbers determine the level of TPN (IV food), magnesium supplements and the flow rates for any of six or seven bags of sterile goo hanging on my IV pole.

5 Comments

Happy Birthday

by on May.09, 2012, under The Days

 

Day Zero, the babes are in.

Around 11am they defrosted my new friends and infused them through a large line at my neck.  “Uneventful” is always good news in the medical lexicon.  There was some expected high blood pressure that gradually receded.  It took a while to sleep off the 50mg of dope but now I’m pretty clear and reasonably comfortable.  I had an egg and some applesauce, enough to earn applause from my nurse.

So I’ve survived battle with a juggernaut of nausea, zen’d my way through many hours of keeping calm and collected, felt the love and support of my ever ready parents and found tremendous appreciation for good nursing.

Thanks for the well wishes, prayers and humor out there.

Love,

Greg

8 Comments

Some of the Story

by on May.09, 2012, under The Days

 

The May 2nd move in went well.  Meetings, paperwork, my large pile of toys including a trunk on a furniture dolly, a large blue exercise ball and a guitar courtesy of John Krossa and family.  Luckily, my 6th floor window looks over the mountains and not the 605 freeway gravel pits.  Good draw.  IV’s started.  Played some Rocksmith on the wall with my PS3 and projector.  DSL on the laptop.  A tech center.

Chemo started six am on the third and I immediately went into hell.  Stopped eating, stopped eliminating, mind destroying nausea.  Gagging, spittting, vomiting.  A pure endurance feat.

On the 8th, it let up.  I started seeking eye contact and talking. But the one dose radiation was too much.  Nine minutes on the first side.  But I collapsed (in a harness) on minute seven on the second side.   After some recovery on the floor, did two more minutes radiation and then to bed with chills and ills.

This evening I got another port installed, like the one PICC in my arm, but this one is in the neck.  Larger bore for the larger stem cells.

Tomorrow is my birthday, as they say.  I’ll switch from O- blood type to O+ or A+.

 

We tried Marinol, Emend, Ativan and others on the nausea but most just lessened it some.  Sleep was sometimes a refuge.  Emend gives bizarre dreams of a level I have never experienced.  Even now I’m awake because of relatively mild but intrusive ills.

The staff here is fantastic.  My parents have been ready at all times but frustratingly helpless again my major opponent.  It’s good to have them and all of you behind me.  Thanks for the letters and texts.  Forgive my quiet but I’ve had few functional calories to spend.

 

2 Comments

Freeze

by on May.06, 2012, under The Days

 

Like a small mammal I hold still

Do not move

Do not speak

Barely breathe as the shadows of predators pass overhead

Please, do not let the heaves return

 

7 Comments

Summary

by on May.05, 2012, under The Days

 

Nausea.  Vomit.  Nausea.

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Emotions

by on May.03, 2012, under The Days

T Minus 7

I knew this transplant was coming in 2011.  I hoped we’d start by late January and I’d be out by April.  No.  Lots more chemo and tests.  The big downer was realizing I won’t be well in time to start the 2012-13 school year in August.  I’m actually a little amazed to be typing 2012-13.  Wow.  This year’s freshman will graduate in 2015.

So, I got over that downer.

Then as April progressed and planning began, I got homesick in a sort of premature way.  The hills grew green and the warm days and summer is festival season and… I’m gonna miss it.   GRRRRRRRRR.   I’m not big into denial or anger but I sure can lay down some frustration.  SLO is so beautiful right now.  I just got my new roommate, Dan.  And Dorene and I have made friends again.

In the few days before I left I started getting excited!  Packing and thinking about what I’ll do in my room.  ACTION!   Much better than months of waiting.  Finally going to the battle.  I was really enjoying the drive down and was a bit maniacal meeting the staff yesterday.  Woo hoo!

First night.  Terrible.  Dry heaves, hot/cold/hot/cold, hated dinner.  All my sleep broken into 40-60 minute periods by nurses and such.  Wow, the suck come that fast?  Sigh.  Ear plugs are ESSENTIAL.

Day 2.  Better.   REALLY good drugs to compensate for the first doses of flor/cytox chemotherapy.   Napping all morning.  Nice nurses.

I’ve met : housekeeping, 2 nurses a day, three therapists, dietitian, vitals guy (6 times a day and weighed twice), a dr. with a turban and my dr chen.  At least nine people have been in this room in less than 24 hours and let’s throw my parents on top for 11.  No, not all at once.

The room is getting broken in but that’s for another post.

 

3 Comments

All Systems Go

by on May.01, 2012, under The Days

It’s T minus 8.  Transplant minus 8 days.  May 9th is infusion day.

I’m packing today for the drive south and admission tomorrow at City of Hope.  Toys, medical supplies, clothes, gifts, a big ball… you know, the necessities.

Most importantly, all the scans and tests of my organs, outputs and blood say, “yes”, you’re clear to go.  Healthy body, good weight, great attitude, prepared and outstandingly supported.  Dan is caring for the pets and plants, keeping the home fires burning.  Mom and Dad are already in San Dimas at the reservoir getting the trailer situated.

Thank you all for your  part of the play.  I couldn’t do it without you.  See you in September.

All Systems Go for Takeoff.

 

8 Comments

Move’n on up… to the south side…

by on Apr.17, 2012, under The Days

My admission date for the City of Hope is May 2nd.   The lights are green.  The count down begins.  T minus 14 days and counting.

 

4 Comments

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