Archive for November, 2011
Sorry to leave the story hanging like a seasonal cliffhanger of Dallas.
- I was losing ground.
Tumors growing, energy flagging, syndromes manifesting, abandoning employment, walking geriatrically, hemorrhaging retina. The second line gemzar/navelbine didn’t work but the side effects did. So… DHAP protocol, third and likely final trench. Um, ah, I really needed this to work to get to my waiting baby blood in Pasadena.
- I’m winning.
The turnaround happened with a Thursday CT Scan followed by a Friday PICC line install, drug drip and two units of red blood that lasted until Sunday night. Yeah, three days in the hospital. But a really nice view. The DHAP makes for nausea and other bio-unpleasantries but….. obviously it was working. The coughing subided, my appetite bloomed, my neck visibly deflated, I could sleep on the left cranky shoulder again, my left grip improved. Rockin’ results. Good enough blood numbers to go home that Wednesday for Thankgiving. Thanks! Given! Daily!
The culmination was a spectacular day yesterday, Monday, where I felt GOOD all day. Not less cranky and irritable. Not fairly good GI tract. Not optimistic. REALLY HIGH ON LIFE. I could feel that Junell energy echoing around inside me, leaking out the pores, infecting those near by. I woke at 4am with a riotous nosebleed (not good news really) and wrote and overdue bitchen letter, editted photos, got the laptop wireless to the big stereo and played grooves loudly through the sunrise.
Side notes : loud bass grooves have healing power. Fatboy Slim is a genius. Go buy yourself a better stereo and use it.
Amazing a friend contacted me in the morning and I got to share my juice with Andrew Westby. We toured some coastal towns, lovin’ up the nature and had Thai at Noi’s in Baywood. Then to the doctor to confirm my port/line is no good and get a blood test. Nap time to balance four hours of night sleep. Then a saucy date featuring a lot of music sharing. But it wasn’t so much about the what as the how I felt and sharing that. Sunshine on the inside, I tell you.
I declare November 28th my best day of 2011.
- Still, plenty of medical crap.
My PICC leaked drip by drip on all my clothes. It ain’t supposed to do that. Today was 7+ hours in the hospital getting a new line plus platelets to shore up the bleeding problems. Very low platelet counts could turn a fall in the shower into a deadly stroke. Caution! I’m not on any meds right now which is swell. Food and supplements count as medicine now and I’m doing low-carb plus my naturopath Dr. Tod Thoring has me eating all kinds of pills and powders that deserve a post of their own.
Never the less, I’m up (such a small understated word) physically and spiritually and might have a week or two before another clue-by-four for Mr. Tumor and side effects. Don’t put on your party hats just yet but go ahead and lift a favorite beverage and scream a fulfilling obscenity in my name.
Watching USC whomp 50-0 on UCLA with Dad and popcorn…. rad. UCLA fired their coach after. Ouch!
I have felt awesome for about six hours in a row. Whoa, man, I don’t know if I can take it.
[boston] It’s been such a long time….
- good chemo drugs, side effects faaaading
- usc football with dad
- 11 for dinner at the uncles
- a super warm loving time at The Warmerdams
- homecoming SLO, my mountains, my house, hang’n with Bryan and Erin
But the key factors
- a great letter written to a dear friend at 4 am
- Beastie Boys, Propellor Heads, Fatboy Slim damn loud funky chunky booom
- Feeling the love, seeing the future big and bright
- That internal wellspring, it goes to eleven but not now though it’s FLOW’N, ahhhh
Cranky nerves lead to Horner’s Syndrome. It’s my left eye that’s droopy and the pupil is smaller.
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Now in French hospital with a freshly installed BARD PICC line. That’s a peripherally inserted central catheter. And lots of bags of fluids from toxins, to salt, a pack of blood. And three pumps.
Back to counting my urine. Back to vitals being taken all day and night. I’m tagged in yellow, yellow socks, yellow bed throw that all say “FALL RISK”. Hey, it ain’t ‘fail risk’.
Cancer often ends as a wasting desease. Since I’m a flaming example of hodgkin’s right now (worse than 2009), I gotta maintain my weight. While 195 was best, 185 wasn’t so bad. Then it was 180 for a few weeks. And today, 177. Not sudden but creepy. A bunch accounts as muscle loss as I’m barely walking right now.
Must get the exercise bike set up. Build a little muscle. Lots of protein powder in the small berry smoothies. Boost the appetite.
BEEFCAKE! Must bulk up!
Dig this spread of activity.
Monday - blood test. I’m cold and it takes four technicians (two in training at Cuesta) five sticks to get one mini vial.
Tuesday – one stick blood type and match for transfusion
Wednesday – 2 sticks for an IV – 2 pints of packed red cells (transfusion) – this brought me back to life. Severe anemia makes a walk to the kitchen into an olympic sport. These cells perked me up distinctly. Seven and a half hours in the hospital. Phew. And FIE! upon the manic loud grandma who said everything twice, once on her phone and then again to her patient husband.
Thursday – a sunset spot appears in my left eye. What’s with the blaze of white and purple? Can’t be good.
Friday – Optometrist looks in there, I’ve blown out two retinal veins. Probably will go away some day. Referred to retinologist.
Saturday – 1 type and mach stick, 1 IV sticck – 1 unit of pure platelets (transfusion), like a bag of dense unfiltered weiss beer – since I hemorrhaged my left retina, the doctor thought better to start clotting. Best to avoid a stroke. No effect on attitude or energy but glad to have them. Through the ER, three hours. Would have been uneventful except my IV clot burst and I bled all over the gurney, floor and a pants as I was getting up to leave.
Monday – blood test. My eleventh needle stick in eight days. I sport so much junky style. I should have a junky disclaimer medic alert bracelet.
Wednesday – doctor talk including mom and dad. All agreed, the second line of drugs (gemzar, navelbine) totally failed. Onto the third line (the, uh, last line) which will require a PICC line (friday) and hospitalization (next week).
November will be a hella critical month of my life. If ever it was time to root, pray, wish and nudge the universe, this is it.
I apologize to all the parents who I have condemned because they post on blogs and other social media about the poopish accomplishments of their first born. I’m making a glass house.
I pooped today. I hadn’t in days. Such a frustrating thing. Half a bottle of stool softener hadn’t helped, nor prunes, it was time for the big gun, the Castor Oil. Despicable fluid. People died from it during The Inquisition. I was determined to self medicate.
Hey, it won’t hurt to try, cold, one more time. I sat. I exercised strange kagelesque muscles. Nada. My gaze fell upon the unattractive opaque dark blue bottle. I began to speak to myself.
“I’m going to drink all of that and you won’t like it.”
My GI remained silent.
“In a second you’ll be full of it and I will persevere, prepare yourself!”
I waited but there was not so much as spasm or a gurgle.
I grasped the bottle and spun off the cap, held it under my nose and draught an enormous breath from the bottle. The smell of sunny dead whale on a beach of rotting garbage filled my consciousness and I began to gag uncontrollably. And. Something. Moved.
With patience I completed my maneuver and declared an unusual but deeply personal victory.
It’s actually one of my favorite words. Say it aloud. Hemorrhagh. Hemorrhage. So much muscle action. Hemorrhage.
Sadly it means blood getting loose. A spot appeared in my left eye yesterday afternoon, like the sun has blinded me. It’s fixed and a bit left of center focus. The doctor says I blew a couple blood vessels. Probably a combination of too much coughing plus a very low platelet (clotting) count. Gonna get a transfusion tomorrow.
No harm but when I look at Jon Stewart, his guest is all foggy. Should clear up after a while.
I get a transfusion tomorrow! My reds and platelets are too low. But the whites are bouncing back.