Friday, March 23, 2012

"Half way there.......??????"

So Chemo Round #3 is behind me...... was all set to go, had my "Supah -P" shirt, My "Supah -P" cape (actually my quilt my mom made me years ago).....spirits were up and I was feeling good........
Then .....not really sure why during my Rituxan infusion (the first of the 4 chemotherapies I get)....the nausea/puke monster hit.....Timing was odd because I had receivied all of my pre-meds before starting the chemo's......and from what I researched the Rituxan doesn't usually cause nausea/vomitting while infusing.....but as usual, why would I do anything by the book......

So.......following a big dose of Ativan and still feeling puking the rest of my day looked little something like this....
NOT the way I like to roll!!!!........Was of course blessed to have Kawika at my side for my infusions, although there was little talking ....more was a comfort knowing he was there.
By the end of my infusions (about 7 hours).....I was up and feeling myself again.....NO I DID NOT BRING ANY SPECIAL MEDS FROM HOME!!!

So....that was round chemo round 3 of 6......I have gotten a lot of congratulations about being "HALF WAY THERE".......I know what that means, thankful for the love and support, the excitement, the hope.......BUT unfortunetly FOR ME  - my "halfway point" will not be until I get past my nadir next week.....the infusions pretty much easy, the week following infusions usually really good (again the high dose steroids help) its the period of nadir when I lose my counts somewhere around 7-10 days that at least after round #2 was a pure forgive me for not being able to "kick up my heels" at this time.....once I get through the worst of round 3
(and hopefully after round 6 done completely)


For sure one something that had me perked up at the end of my infusions was the arrival of my brother Scott. He got in from Colorado pretty much just as my infusions were pau and arrived at the Cancer Clinic just about same time as I was being discharged.

Was a long day for both of us, so we headed home and I was able to introduce him to Hakipu'u.....I think if it weren't for the wife and kids back home he wouldn't be leaving!!!
Was a good evening talk story, catch up, enjoy each others company....
Then in the morning we were up and GOING!!!
I got him up and out on my morning walk with me....thankfully I was feeling great and we made it all the way down to Kualoa Park.....was a beautiful sunny morning.... first time I had a companion on this walk with me......and thankful to share the experience with him.
I was pounding the anti-emetics so was stoked when able to take him to Uncle Bobo's BBQ for grindz and I actually kept mines down!!!
We followed lunch up with  SUP'ing around Hakipu'u with Terry and a friend of hers.

Scott was a natural and we had a blast....of course for me to be out on the water one day after chemo.....just call it BLESSINGS....
So blessed to be surrounded by so much love and support and to have opportunities at "normalcy" no matter how long they last.
Said it before and will repeat it over and over......

The "Hiccup Monster" did show up the day after chemo.....luckily a few weeks back a good friend shared a study with me that was done on patients who experience post-chemo hiccups....I thought we were a "rare group" but some reasearch showed American Cancer Society reports that 30 percent of chemotherapy patients suffer from hiccups as a side effect of treatment.
Again the 1st hour of the hiccups, little funny, plenty hour 2 leads to hour 3 not so much fun as the pain and fatigue set in....Luckily I had talked with my onco the morning before my chemo and got a script and was "armed" with some Baclofen just in case...I am doing what I can to limit the amount of meds I take........
Seems to be a losing battle....but we are strong at work at changing this and moving into some more naturopathic, naturally occuring alternatives as an adjunct to my chemotherapies.

So I did the "hiccup game" for about an 2 hours....the upside down drinking trick didn't work so well,,,,but I also wasn't prep'd with bad!
So took my pill and sure enough it worked, I had about 3 hours hiccup free....then they were back...and this time with a VENGANCE.... I didn't know you could have "doubled up hiccups" before the first one passes another one it on you.....again first few funny...after that its torture....down the hatch with another pill and lil'sumptin to help me sleep and the "hiccup gremlin" was satisfied and I was able to get a good nite sleep.

My blood tests on Monday showed that my ANC never really recovered after round 2 of Chemo....

Absolute neutrophil count (ANC) is a measure of the number of neutrophil granulocytes also known as polymorphonuclear cells, PMN's, polys, granulocytes, segmented neutrophils or segs) present in the blood. Neutrophils are a type of white blood cell that fights against infection.
The ANC is calculated from measurements of the total number of white blood cells (WBC), usually based on the combined percentage of mature neutrophils (sometimes called "segs," or segmented cells) and bands, which are immature neutrophils.

Break it this "lesson" down a little further :
What are white cells? Blood contains three main elements. The red cells which carry oxygen around the body from the lungs, platelets which stop us bleeding when we are cut, and white cells which help our immunity and protect us from infection. There are a number of different types of white cells but one of the most important types, are called neutrophils or granulocytes. These protect us from bacteria, which are the most likely source of infection during chemotherapy.
How does chemotherapy effect your white cells? Chemotherapy affects the rapidly dividing cells within the body. The cells (stem cells) which make white cells are found within the bone marrow, also grow fairly rapidly and hence are often damaged by chemotherapy. Hopefully the most rapidly dividing cells of all are those within the tumour. This is one of the reasons that chemotherapy is given in cycles, to allow the white cells to recover before the next injection. Hopefully less normal cells are killed at each cycle than tumour cells and more normal cells recover than tumour cells before the next cycle.
How does Neulasta work? Neulasta is similar to a naturally occurring protein which stimulates the colonies of white stem cells within the bone marrow causing the level of neutrophils in the blood to rise (Granulocyte Colony Stimulating Factor - GCSF). Increasing the levels of neutrophils in the blood stream reduces the risk and severity of infection. Several well conducted international studies, have proven the effectiveness of Neulasta over no medicationpreviously commonly used white cell booster Neupogen.

.....So decision was made to start me on a shot of Neulasta 2 days after my nex 4 chemo's
Neulasta to the clinic we went Wednsday morning for my shot...come to find out because of the co$t of the shot, I can not do it myself at home......seems odd that its more cost effective to make the patient schedule and appointment in a busy clinic, drive to the hospital and have to have a nurse administer the injection (but thats just my inner nurse talking).
Following my shot we were off so I could show off some of "My Hawai'i" to Scott.

Was a one of the best days I have had in a LONG TIME......needed this time spent together!!
Hit up Eastside...blowhole look out, Sandy's, Makapu'u, Nalo, Lanikai, Kailua....
WORN OUT BY THE END OF THE DAY.... (Good Kine Wornout)

Wednsday evening I was feeling a bit achy ....having some bone and joint pain.....Thursday morning when I woke, I layed in bed never before so aware of my skeletal system and my joints....pain was so prominent.....
Pushed through the pain ...did a few hours of MORE financial paperwork - got it filed witht he state and then was blessed to have an afternoon of quiet up Luluku with Kehau (#2) a good friend Mark and his 'ohana.

Looking forward to getting an OKIE from my doc's to get back to work in the lo' has been far too long!! Was amazing how being up there helped balance my mind/body/spirit........
Was glad Scott got to experience and see some of what few here do.

Back to the "Neulasta Lesson"

#1 listed side effect per manufacturer.....Spleen Rupture. Your spleen may become enlarged and can rupture while taking Neulasta. A ruptured spleen can cause death......
NICE basically I just just gotta stay on look out for left abdominal pain/left shoulder pain.

#2 listed side effect: it is common to have aching bones and joints for 2-3 days duration starting 1-2 days after the start of the injections. This is usually mild and is caused by the bone marrow working harder to produce more white cells. Occasionally it is more troublesome and pain killers are required.

I had been "warned" about this by my injection nurse...she said it is more prominent in younger patients whose bone marrows are more likely to ramp up harder and faster.....I have seen this in the pediatric population and they have pretty much all decribed it as pretty awful and for some the worst of everything.......

THEY WERE NOT LYING....  this is a whole brand new level of pain/discomfort....hard to describe....I have been up most of the night experiencing experience moderate to at times severe bone/joint pain, mostly in the legs, and pain in the back and neck....even my hydrocodone has hardly helped.....but I am also not willing to go back on that crap 2 pills every 4-6 hours....remember the constipation stories......NO THANKS!!
They pain I guess should pass in about 4 days....I have seen a lot of blogs talking about the use of Claritin to help in this situation, because it hasn't been tested or approved by the can not be "officially prescribed or recommended"....but seems plenty patients are stating getting good relief...or at least lessened symptoms....only thing is supposed to start taking it the day before injection...then 4 days after.....guess I am a little "behind the ball" on this one.......there's always next time.

Got to remember things could always be worse!!! I am up and moving.....I think a good long walk will help loosen me up. Got Scott here till tomorrow evening so gotta make the most of time we have together....planning to head westside (please let the sun be shining) so can get him out on the sailing canoe and let him experience first hand what has become so much a part of me and my life.

Put one foot in front of the other
And soon you’ll be walking cross the floor
Put one foot in front of the other
And soon you’ll be walking out the door

You never will get where you’re going
If you never get up on your feet
Come on, there’s a good tail wind blowing
A fast walking man is hard to beat

Put one foot in front of the other
And soon you’ll be walking cross the floor
Put one foot in front of the other
And soon you’ll be walking out the door

If you want to change your direction
If your time of life is at hand
Well don’t be the rule be the exception
A good way to start is to stand

Put one foot in front of the other
And soon you’ll be walking cross the floor
Put one foot in front of the other
And soon you’ll be walking out the door

If I want to change the reflection
I see in the mirror each morn
You mean that it's just my election
To vote for a chance to be reborn
-Bass, Jules



  1. Hey uncle Patrick its Bailey aka "Bails Bails" (sma type 1). It's been a long time since my family and I have seen you. We miss your witty/cynical sense of humor and your honesty. Mom has been reading your blogs and tells me what an inspiration you are to her. She also raves about your photos! I miss you looking at me and telling me, "what!, what!," egging me to roll my eyes at you.

    Well, my family and I wanted to let you know that we will be here to fight with you as you did with us in the PICU. We appreciated having someone there who would listen to us when we needed to vent or have a cry. You are such an inspiration to us! You are almost halfway there, you can do it!!! We are so proud of you uncle Pat!

    Love, Bails Bails

  2. HEYA Bailey!!! so great to hear from you, I hear all the time how good your doing!!! Give my love to your mom and family, hopefully can see you all some time soon/.......can't wait to see the eyes roll when you see my bolo head
    Love you
    Uncle Patrick