Saturday, May 12, 2012

"Circling The Drain"......

At this point most of you are probably already aware of my being hospitalized this past weekend, been lots of questions about what went down....some of it's kinda "fuzzy memories" but going try give you and idea of what went down and give you a look into what can happen when someone on chemotherapy comes down with an infection.....again this is MY experience....not every cancer patient goes through the same....some never see anything like this.......some go through FAR WORSE.
______________________________________________________________ last blog was about dealing with "Da Puke Monster"......sent him packing by late Thursday into Friday....then woke up Friday morning feeling a little shitty......scratchy throat, runny nose and run down.
Spent the day at home chilling....mostly sofa surfing. Watched my temperature close, it never got over 99.0F. I remember going to bed that nite feeling a little bit shittier...... took an "adult dose" of Benadryl...which being the pantie I am was too much and made me restless and tossing turning most of nite.
Woke of Saturday morning feeling like complete SHIT (or at least what I though complete SHIT felt like).....same thing runny nose, scratchy throat, small kine cough.....for sure battling some bug more puking....and again watched my Temp's close ....... Temperature above 100.5F and I am supposed call doctor and head to ER......but again temps never got over 99.1F all morning.
Remember being crazy tired, so laid down on the sofa for a nap sometime late morning.........
Woke sometime after 1:00pm with a strong cough, bringing all kinds green stuff up out of my lungs, was having small kine troubles catching my breath, and my fever was 101.5
I called the Cancer Clinic and of course was told head directly to ER and the nurse would give the Oncologist on call a heads up that I was headed in.
When I was discharged from hospital back in February the nurses had told me if my fever ever went over 101.0 to make sure I brought my "overnite bag" to ER cause slim chance I wouldn't be admitted.
I called my friend Kolea, me and her work together in the PICU and lucky for me she lives right up the road....plan has always been she would be my "medical backup" person if needed.
I told her take her time coming down to get me, I needed to shower, prep the house and of course when I was first diagnosed and came home I had a pre-packed overnight /in case of emergency bag on standby for a situation like this.....yeah, um guess who went and unpacked that bag a few weeks ago with thoughts of being "superhuman" and "would never need to be admitted to hospital"
The decision to try do all of this stuff and tell Kolea to take her time was an
In the hour that went by my breathing was getting more and more labored, just couldn't get air into my lungs, couldn't stop coughing and my temperature had shot to over 103.F
Luckily Nakoa was here to keep me calm (make sure I didn't pass out) but from what Kolea told me I looked like when she arrived - I feel bad for putting Nakoa through that.
Yeah yeah ...your asking "why not just call the ambulance".......1.denial of how bad the situation was 2.high fever/hypoxia my brain was not functioning properly
3. if you've ever been to Hakipu'u you can imagine how long it would take for a ambulance to get here and then try convince them I had to go to Queens Hospital and not Castle which is closer.

Whatevah's......decision was made I got in car with Kolea and off to Queens ER we went.
When we arrived at the ER things were getting plenty worse, I could breathe (Kolea described it as bobbing with each breath) , could barely walk and I was making no sense at all.
No need say but they obviously didn't waste any time grabbing me, bypassing triage and getting me right into the ER (sorry old Japanese dude that got booted from the room they put me in- I paid for it having to deal with the glaring and staring from your family for the next while)
Guess I was really making no sense, I told the doctor I had a Neuroblastoma.....then a little later when realized that wasn't rite I couldn't remember what kind cancer I had.....
Put on monitors, vitals done, STAT labs and blood gas drawn......
Temp still over 103, HR sustained above 120, normal to what is for me low B/P's
It was the blood work results that bumped me up to what they considered "Critial Status"
It showed I was hypoxic - meaning my blood was carrying very little oxygen through my body.
The big on was my serum  Lactate of 3.4 (text book normal Lactate is 0.5-2.2)......
Here comes the teaching..... aerobic metabolism which supplies appox 90% of the bodies energy needs requires oxygen and the body switches to anaerobic metabolism and  lactic acid is the byproduct of that.
A serum lactate level measures the amount of lactic acid in the blood and is an indicator of tissue hypoperfusion and hypoxia......meaning my there was not enough blood getting to my organs and through my body.
Most patients who develop lactic acidosis are considered critically ill. And along with the lab values I was showing most of the clinical signs and symptoms....altered mental status, pale, cold but diaphoretic.....hypotension, tachypnea and tachycardia.......
I know plenty folks thinking...."ewwww he shoulda went to hospital earlier in week when throwing up"....."why he always gotta try be superman".....blah blah blah
I had not been puking for over 24 hours and my electrolytes on my lab work showed I WAS NOT DEHYDRATED....this buggah infection came on out of know where fast and hard.
So, bam IV's in both arms, at one point they were running 3 separate liter bags of IV fluids into me at same time.....Chest X-ray showed a left lower lobe pneumonia.....antibiotics started.......fluids and Tylenol into me started to feel "better".....for sure my brain stopped frying and things making more sense.....for sure was alert and oriented when the ER attending told me she was prolly going to have to admit me to "The UNIT".....I was all 'THE PICU????" so maybe wasn't totally with it.....but was like FUCK THAT I AM NOT GOING TO THE ICU.....and I guess that's when things started to sink in about how sick I really was.......
More time in ER, everything started to settle, I was more stable and all of sudden the transporters are there to "take me to my room"......I'm all "where am I going?" "WTF is going on".......ultimately was admitted to the cancer unit not the ICU.....knda woulda been nice if the ER attending gave me heads up about that so I wasn't still freaking about being a ICU patient...BIIIIAAATCH!!
Back to the 7 Ewa unit I went.....flood of memories from being stuck there when this cancer shit storm started in January....but felt good to see familiar faces/friends - the nurses that work that unit are the Second Best in Hawai'i (sorry folks still gotta give #1 props to my PICU 'Ohana at Kapi'olani)
3 of them at my side, making sure I was ok, settling me in, seeing what I needed.....made me feel good and protected.
Not much memories of Saturday nite...I remember Kolea leaving around 9?? and that's about it.
Sunday??? a blurr.....I know my friend Laurie came by and brought me CPK.....I think I ate it....I don't remember anyone else being around and think I fell asleep on Laurie and that was pretty much all I did all day.....THANK YOU LAURIE - you have been such an amazing friend and support through all of have one of the biggest , caring , giving hearts of anyone I have ever known and lucky love me??? <wink><wink>
Sunday nite was PURE HELL......was still having plenty troubles breathing, felt my body shutting down on me and then the aches and pains set took every ounce of energy I had to get myself upright just so I could take a piss.
It was during the nite, quiet, alone and miserable that I came to a sense of peace that I was ready "to go" if it was truly my was not "giving up" I was "coming to peace with".....I could feel my spirit trapped inside what felt like my dying body and that is something I have never wanted ,it was as if some inner light was still on inside of me but everything around it was shutting down and it had no where to go.......... my spirit deserves better.....I called out to who ever was listening....I use the term angels or angel guides....fill in the "blank" with what ever you choose ....
I asked them to show me the way to set my spirit deserved better than this....its been a wonderful life for me full of adventure, experience, ups downs all arounds, met some amazing folks, seen some amazing places and shared experiences with others in my life that are indescribable.....I was OK with setting my spirit free from my body, free from the from "this reality"
I just had nothing left to fight with....and at that point the fighting seemed useless....not sure where my spirit would go, but it had to be better than where it was.......
No one answered.......I laid there alone in the dark, cold, barely able to move , gasping for breathing and one.....never felt that isolated before....the tears came which then led to some sort of sleep.
Monday was continued misery and battling to just do basic things like breath, the coughing had gotten Onco who I hadn't seen yet since this all started came in early and I could see the look in his eyes of " oh he's fucked"......Concern at this point was the Monday was technically when I would be due to start my Nadir from Chemo Round #5 a week before......concern was my counts would drop and I would get plenty sicker.....nothing to do but wait for see......
My great friend/brother and rock through the past few months, Kawika showed up at my bedside, I remember we talked, tears flowed......the comfort of him holding my hand put me enough at ease to fall to sleep....pretty sure Monday was spent just sleeping.....
Monday nite was an active nite in my hospital "241 Hui" that I called out to for help the previous nite showed up.....the details of the activity I'll keep to myself, but I was being comforted at first and then pushed/prodded to let me know it was time to start fighting back and getting myself through all of this.....amazing thing was that miles away the mom of one of my "241 Hui" was dreaming of exactly what her daughter was there doing.......
So Tuesday morning still felt like shit, but my counts weren't dropping the way they were expecting and I knew it was time to get my mind/spirit/body connection back and get to temps would climb to almost febrile state and then bam my body would step up and drive them back lungs had cleared, there was no more pneumonia showing on my chest xrays, infulenza tests came back negative, sputum cultures negative, blood cultures showing no growth.
Took it easy on Tuesday - spent some time with Kawika and Malia
THANK YOU Malia for being there at the very moment I needed my own personal "Shirley Maclaine".......
I had just woken up from a sleep, sat up at side of bed...was having plenty dizzy spells moving too fast, so knew to take it slow....and bam without warning.....PUKED all over the floor....dunno what caused it,  puked for a bit got some "no puke meds" - luckily one was a big fatty dose of IV Ativan which always lands this pantie on his ass!!!
Malia was ON IT, had the staff in there cleaning up and medicating me like I was the most important person in the world~~!!
Rest of Tuesday was just a chill day, quietly working with my body to heal.

Wednesday morning was feeling small bit like myself again , counts still had not totally "bottomed out" my body was working OT and  was able to crack some jokes with my Onco (actually at my Onco) when he came in the morning.....good sign I was "on the mend" decided to transition from IV to oral antibiotics and see if my system would handle and if so, made him repeat the words "possible discharge tomorrow"
Spent time with Kawika in the morning, actually got up and out of the room for a "lap around the unit" while he was with me.....having him at my side for sure makes me feel protected and knew he wouldn't let me push myself too far.
Got to get "outside" on the unit lanai, feel some fresh air, the wind, sun on my face....was nice.
For sure was surprised when got on scale and realized it was saying I was 12 lbs lighter then when I went to hospital on Saturday...for sure some of the weight on the admit was the 4 liters of fluid the gave me...but damn that was a big loss after maintaining my weight through past few months.
Was spent so laid down to take a nap, woke up and there was this beautiful wahine sitting next to my first couldn't focus for see who it was.....not sure if was just still sleepy or the light coming in the window...maybe both...then focused and realized it was Kehau (1)...still not clear how long she sat there at my side and let me sleep....but for sure was a wonderful suprise to wake up to her smiling face....didn't get a whole lot of time together because I had spent most of it asleep....but was a comfort for me to have her there.
Got to spend the late afternoon with an amazing kind generous Hawaiian that truly understands and lives Aloha...was flattered and honored when he offered to come by to visit me.....
We sat and talked story for hours, he comes from an amazing family that has had so much influence on Hawaiiana and so much history....was interesting that we found so much common ground and similarities to talk of......was a huge gift to me when he pulled out his guitar and played for about bringing tears to my looking forward to him performing at the Benefit next week.
After his visit and our talk I was left "re-charge" had plenty to think on and was "re-affirmed" that there is still PLENTY work for me to do on this planet after I pau kicking BOB's ASS!!
Thursday I was up by 4:00 am...practically packing my bags in anticipation of going home.....cleaned and ready to go when Doc came in....and got the "thumbs up" for go home....reality was even though I was still plenty weak and feeling shitty, I was on oral antibiotics, no more puking, feeling more like myself, and because was in my nadir - the hospital one of the dirtiest environments and unsafest places for me to be. Made promise that I would call if anything changed and for sure would have folks checking in on me at home.
Wasn't sure how was going to get home since everyone so busy with their lives and most folks at work.....luckily my good friend Bianca was still on island, her last day before heading back home and she offered to come get me and take me home.
Was perfect, I been missing her since she left Hawai'i, got to spend my b-day morning with her, but because she pregnant I couldn't be around her after got Chemo on gave us a little bit more time together before she had to leave island.
For sure was good to have her there to keep me calm when the pharmacist informed me that two of the new meds I was sent home on would not be covered by my state health insurance/ of which the big time antibiotic I have to be on that there is no "cheaper" generic sub for......not sure how it went down, but somehow I managed to leave there with 7 out of the 10 pills I need...will deal with getting the other 3 on Monday when go in for my follow up appt.
Felt wonderful to be home, see my cats who were very well taken care of by Terry and Nakoa while I was gone.....for sure they missed me...haven't left my side since I got home.
You never appreciate taking a shower in your own home until you spend a few days in hospital...
Got a small kine scare when after my shower I was dressed looked at myself in the mirror and realized there was fluid collecting on my t-shirt at my port site.....freaked me out......closer look and realized my skin has become pretty paper thin and the removal of the dressing they had over my port while it was accessed, left my skin raw and blistered and one of the blisters had popped and was leaking.....NOT my port thankfully............
Popped my pain pills, big fatty slug of my cough syrup and climbed into the comfort of my own bed for the longest sleep I've seen in the last week.
Usually the cats, Kolohe especially is on me at 0500 to wake up start my day (ie:feed them and let them out) and this morning they were nice enough to stay cuddled up with me and we all slept past 0700.....unheard of in this house!!
Woke up today feeling like what I think a 80 yr old feels like, took a while to roll out of bed, slow moving, but steady on my feet. TIRED TIRED TIRED.......headache wont pass and plenty of body aches and pains, which unfortunately has me back on a bunch of the pills I had gotten myself off of...the cycle of taking one pill to relieve one thing but then having to take another to counter the effects of the first, then a third because the second works to well....blah blah blah.....I do have to write down everything I take as soon as I take it....chemo brain leaves me wondering 5 minutes later if I took anything at all....recipe for some trouble!
Got some work done for the benefit, chose the photos of mine I am going to have put on canvas for the silent auction, then it was nap #1 time....was up from that for and hour or so before Nap#2 came on.
Physical activities today....walking to the mailbox......driving garbage cans up the driveway for pick up tomorrow and an evening walk out front to lounge chairs to watch the beautiful things that happen in Hakipu'u when the sun starts to set on the other side of the mountains.
Nap #3 ...then this blog........

So....there ya have experience of the past few days......thank you all for your calls, letters, texts, facebook posts ...everything you did to remind me I do for reals have AN ARMY BEHIND ME!!!
The prayers, good vibes, wishes and all were put to good use....I'm still plenty weak, battling with the cough, the fatigue  headaches and body aches..are pretty much to be expected after the cumulative effects of 5 rounds of chemo and the "beat down" my body took over the past few days...but I am feeling more and more myself......I am fighting hard as I can.
And am so thankful to all of your for all of your caring, love and support.....once again I am blown away and looking forward to when all of this shit is behind me and I can begin PAYING FORWARD the generosity, support and lessons I have learned these past few months.

“It scares me how hard it is to remember life before you. I can't even make the comparisons anymore, because my memories of that time have all the depth of a photograph. It seems foolish to play games of better and worse. It's simply a matter of is and is no longer.”
― David Levithan

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