Greg, How Are You?

The Days

The Tiniest Window of Power

by on Mar.26, 2012, under The Days

Here it is, the juiciest (juiced) days of the cycle.  An extra week of recover plus steroids are hitting… ambition flows… before fatigue spikes later in the week and it all goes to hell.

The to-do list, so dreary and ossified, suddenly interesting.  Hey, maybe take out the trash and the dishes before installing the new living room lights and then some blog updates and those letters I’ve been meaning to write.  No problem!

I’ll probably be waking up at 2am for the next three nights and then POW, right in the kisser.

 

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Pasadena Calling

by on Mar.22, 2012, under The Days

It’s on.  Going to Duarte in mid April.  Preliminary tests start after another round of chemo.

Dad and I went down there Tuesday (on 24 hours notice) and cruised San Dimas near the reservoir for trailer parking, Duarte for restaurants and the area of Azusa and Baldwin park for best routes to and from the hospital.  Smog.  Five lane highways.  Somewhat hazy hills just four miles north.  Gravel pits.  LA river or some such canal.  No worries, I’ll be focused mostly on four walls.

We left at 3:30 am from SLO, beat traffic, caught a breakfast slam, first in line at reception.  Quick blood test.  Long wait for Dr. Chen.  Little if any new information.  Approval to start preliminary tests.

Rough plan:

  • Move down there mid april.  Parents bring their fifth wheel trailer.
  • Week of prep and poison.
  • Infusion of baby cells.
  • 3 or 4 weeks in the hospital bubble.
  • 3 months in a cottage on the City of Hope 70 acre campus.  Avoiding infections.
  • Then I have a new immune system, maybe a new blood type.  Ideally no tumors.

I’m not excited, though this has been the Next Goal for several months.  It’s hard to consider being away from home and friends for four months.  And it won’t be exactly ‘pleasant’ in the process.  The agony of not being at work has long since faded into the comfort of no work stress and now the novelty of time off is pretty shot.  I don’t fear roll of the dice for an 80% survival rate on the process.  I’m going in at a good weight.  The odds of a cure are about 50/50 and the law of averages is in my favor after missing the targets the last few years.  Plus, I kick ass.  So there.

 

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Psycho Schematic

by on Mar.22, 2012, under The Days

Things are just hard.  Harder than, before.

Harder to motivate.  Harder to stay in action.  More intimidating.  Molehills look like mountains.

Feels like heartbreak.  You probably know such a time.

<sigh>  Tired of waiting.  Don’t want to be a waiter.  Want to be a doer.

 

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w00t! PET me nice.

by on Mar.08, 2012, under The Days

Good news.  The bad boy tumors are half as active and the small ones are “resolved”.  YES!   Now the question is… good enough for a transplant?  Stay tuned.

 

EXAM: PET WHOLE BODY W/CT W/O CONTRAST

FINDINGS:

HEAD: Normal cranial activity.  (ed: yeah, right)

NECK: Moderate improvement in size and markedly improved hypermetabolic activity of previously described left cervical level V & VI adenopathy with maximum SUV now 2.5 (previously 6.4).  Normal activity in seen in the salivary glands, tonsils, tongue, and laryngeal muscles.

CHEST: Marked improvement in superior mediastinal hypermetabolic adenopathy with conglomerate nodal mass persisting but now demonstrating maximum SUV of 4.7 (previously 8.9).  Expected degrees of blood pool, vascular wall and cardiac activity are seen.  Resolution of previously described prevascular mediastinal and diaphragmatic/pericardial hypermetaboic lymph nodes.

ABDOMEN: Normal heterogeneous liver activity is present.  There is expected activity noted within the kidneys, ureters and bowel.

PELVIS: Physiologic expected bowel and bladder activity is noted.  New intense left pelvic wall focus appears related to an intraluminal distal ureteral bolus of excreted FDG agent.

BONES/EXTREMIIES: Normal bone marrow activity is noted.

IMPRESSION: Marked improved cervical and thoracic disease, as described above.

 

I’ll send 10 paper cranes to the first person who can explain the pelvis results.

 

g

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The Haps

by on Mar.07, 2012, under The Days

Not the worst bottom of the chemo cycle but definitely one of the longest and moodiest.  I’ve been away from house and supplements due to a fantastic remodel of the two main rooms of the house.  Terrible timing, great results.  The steroid up’s are great and the downs are just sad, sad, sad.  Already had a transfusion and expect another tomorrow.

PET scan today.  Probably have some news on Monday.  Knockin’ on the door to Duarte (City of Hope) once again.

 

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Shadrach, Meshach, AChemoDayGoes

by on Feb.22, 2012, under The Days

ESHAP Regimen
Cycle 2
Infusion Day 2 of 5

Here we go, over the falls, into the lake of ick.  The Worm (my gi tract) and I lose harmony for a while.  Any upset, too hot, too cold, hungry, overfull, The Worm makes me pay with gags and fits and tears.  I try not to blame it, I know it’s only being frightened.  I talk it down.  “Easy, there boy.”  And, “hold on, I’ll get you a snack.”   I pet it, albeit on the outside of my abdomen.  Give it a cookie.

Four hours can go several ways.  National Geographic Magazine.  Blogging.  I can unplug my pump from the wall socket and go sit in the library, perhaps to share a meal with Judy if a Tuesday.  Today I copied favorite messages off my phone into the laptop.  Some are many months old.  One’s more than a year.  And I sent a bunch of text’s back.  People probably don’t realize what a long delayed reply it is.  I appreciate the positive messages and I always hope my ‘payback’ arrives at an opportune moment.

Today, it did. My love and a well wish arrived minutes after a breakup.   I appear divine.  Yeah, I’m glad to be that pipe from divine to flesh.

Tomorrow I might sleep.  I might convert dreams and inventions to text.  To scheme of things for better days.

 

 

 

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The Sun Also Rises

by on Feb.08, 2012, under The Days

 

I’m out of the house, 10 am, in a t-shirt at a sidewalk seat of a cafe.

First, big gratitude to the kindness of nature.

And second to my landlord for coming over this morning to do some restoration on the house.  That got me up and moving.  The tide has turned and I’m feeling better every day after the chemical abuses of last week.  Wow, it just occurs to me I’m sort of a binge addict.

Last night Andrew and I emptied out the dining room and living room so Leo can scrape, fill and paint the ceiling this month before Dan moves in.  Simple things feel like hard work but with proper pacing, all is done on time.  Also, being busy keeps thoughts away from grumpy stomach, ringing ears and all the little discomforts.

I’m excited to think about my house as modern.  Ten years there with ancient carpet, chipped paint and the dust… good time for renewal.  Soon, smooth ceilings, fresh paint and hardwood floors.  And maybe some bamboo shades.  Certainly, a ton of house plants.

Friends from Mission Prep are bringing me food.  My folks, Bob and Jan, are here looking after my nutrition and helping around the house.  I get to enjoy growing well being until the next 5 day zap starting on the 21st.  And, no, that wasn’t nearly enough rain on Tuesday.

 

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Mixed News

by on Jan.30, 2012, under The Days

The PET scan showed good progress but not enough to head to Pasadena for a transplant.  No green light.

So, two cycles of chemo, three weeks each.  Staying home for another six weeks.

Not bad and still room for good.  Huzzah.

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Well and looking Weller

by on Jan.21, 2012, under The Days

I’m over my cold.  Yay for functional immune systems!

And I’m feeling great.  Five weeks since my last chemo and I’m perky, curious and for the first time in ages, on a road trip to norcal.

What’s up with the medical world?   Dr. Malone thinks I might be ready for a transplant and has called for a PET scan soonest.  The results determine what happens next.  We’re a hair’s width from starting LA motions and we just can’t help planning ahead even though the decision is days in front of us.

I need to ready the house for my long absence.  Mom and Dad will prep their trailer and move to a park near the hospital.

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Argh

by on Jan.14, 2012, under The Days

Head cold, sinus cold.

Amicable breakup (second week of november) now sour breakup (wednesday).

House, disarray.  Yard, unsightly piles.

Sleep, disrupted.  Mouth breathing.

But the love and support remains awesome.

 

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