Thursday, April 12, 2012

Pau Chemo Round #4

Aloha.....sorry to be gone so long from this blog.....thanks for sticking with me and the questions on how I am doing and when next entry will be...
Well its 2:00am and I find myself sleepless in Hakipu'u....was woken up about 2 hours back when the deep bone pain secondary to the Neulasta shot I got this morning....good news is the first Neulasta shot following round #3 worked and my counts were up before Round #4 so no need for delay treatment.
This is also the first night since the start of all of this that "Da Puke Monster" is lingering VERY CLOSE BY!! So since no sleep why not blog....
Here we go....

Chemo Round #4 was this past Monday far as the actual infusions go this one was the WORST!
I started feeling nauseated again during the Rituxan infusion, the one chemo that should be least likely to cause nausea during infusion (according to the "experts") ...well this time the nausea led right into full on puking......puked through almost the entire second half of the infusion ...about 2 hours...nothing they gave me to stop the puking seemed to want to work....just had to push through it.
By the time all my chemo's were pau and time to go home I was feeling good ...was a looong day!
Since Monday's infusion I have felt closer to the edge of puking than I have with previous infusions.....
Tonight is actually the first night I set up the "puke kit" next to the bed.....nothing worse than not making it all the way to the toilet!!! Sipping my ginger tea and hoping my phenergan kicks in...
Luckily no hiccups post chemo this round!!

Physically I have been doing ok between rounds 3 and 4....for sure the fatigue sets in faster, knocks me down a bit harder and lasts a whole lot longer.
Lately the fatigue is accompanied difficulty catching  my breath, and the raspy voice that hasn't been around since the beginning of all of this.
Did a chest x-ray Monday prior to starting my chemo -nothing showed that looked "new" and thoughts are that the dyspnea and raspy voice are just counter parts of the fatigue.
Basically my Oncologist congratulated me for "finally being a normal cancer patient" meaning this is the "normal' kind stuff we go through.... (he also called me a "pantie" after seeing my xray - LOVE that guy!!)
We discussed the neuropathy side effect of the Vincristine toxicity....the loss of feeling in my finger tips I mentioned in previous hasn't gotten any worse or any better....although I would like to be "Supah P" and stick it out, full dose - on time - get through all of this.....the concern of the neuropathy being permanent got us to agree to 1/2 the dosage I am getting and "wait and see".
According to the Oncologist, "if any one of my chemos needed to be discontinued this is the one that would be safest to stop"........I am more than half way through - I DON'T WANT ANYTHING STOPPED!!

I have been doing more and more research and trying different natural sources of alleviating some of the side effects of all of this and help my body fight and mend....gotten into juicing - that's a whole new world.....haven't quited gotten the mix of ingredients down but still at it daily.
Reading alot of dietary/cancer treatment books...realizing there is NO ONE MAGIC BULLET  out there that is going to cure me on its own....but rather finding the adjunct "therapies" that will work along with the chemotherapies......and in the end completely change my eating habits which can only benefit me in the end.
I have been able to maintain my weight after the initial loss at start of all of this......all of the home cooking that gets dropped off for me full of healthy ingredients and LOVE - is for sure keeping me fed well and taken care of.
I feel like I am doing better.....for sure the things that work best for me is the just having something to look forward to, helping out with the new canoe, being out on the canoe, have picked up my camera again and been working on my photography. Spending time with friends, reading and mostly just enjoying seeing life through a different set of eyes......

Still get plenty challenges with "the stresses".....completed the application for Social Security Disability know "the program we all pay into that is supposed to be there in our time of need"...did my phone interview and at the end of it was told my file would now be turned over to the "Disability Decision Department" who would review my case and I could expect to hear back from them in 3-6 MONTHS
Seriously , no jokes.......I was STUNNED.....I have been out of work, no income since January 25 how the hell do they expect me to survive another 3-6 months .....makes no sense...I was told its" just the way it is".....we will see about that!! Hopefully I will have better news in next blog...I am not giving up that easily.
I mentioned that as of March 1 did receive my state health benefits....leaving me with just over $100,000 in bills from Jan/Feb.....thankful to finally have something...until this past weekend when for the first time I went to use my HMSA/QUEST card to pick up a prescription refill and was told that my coverage DOES NOT COVER THAT MEDICATION!!!
Blew my mind, and pulled the rug right out from under me.....had my full on crying in the pharmacy....was  just the feeling of being beaten down once again by the system, feeling completely helpless.....Paid for my meds and got out of there (much mahalos to everyone who stepped right up and offered to get my meds for me!!! Best hui I could ask for!)
Come to find out that the QUEST (state healthcare) that I was instructed to apply for and now have is NOT the one that is best suited to my needs....there is a whole nother level called QEXA which is the program coverage for folks considered "disabled".....since as of now it appears I will be out of work for at least one year...this is the plan I should have been on .......
SOOOOOOO......the drowning in paperwork that I thought pau, has restarted.....telling you if the cancer don't kill me all the stress from this shit will.
STILL waiting to hear final word/approval for my food stamps....not sure why taking so long...I made the 5 trips personally each time they said there was "another bit of paperwork needed".... hoping that answer is just a phone call away....but of course that phone call means - I call them in the morning, leave my name and case number then have to be by the phone all day, sometimes until the next day till I receive a call back......good times 'eh?!?!

Once again I have to say how thankful and fortunate I am to be blessed with so many generous folks in my life.....if it weren't for the chipin site and all of the financial gifts I have received I would have been out of my home already.....losing more of my independence is one of the things that frightens me more than the rest......that chipin site has been a blessing....hoping can reach the goal by months end deadline  if it starts to feel as if I am BEGGING  it is because I pretty much AM!! Been getting a fast tutoring in begging thanks to the state and federal government agencies- all of the money being raised on that is going to pay rent, electric (had to bite the bullet and cancelled the cable tv/dvr) food and living expenses.
The medical bills will have to wait... 
working hard on securing a site to host a benefit/fundraiser....been hard at work going through my photography and getting pics ready for the silent looking forward to being able to "give something of myself" back in thanks for folks generosity.....once the spot and date are set we will get the word out.

Had a wonderful Hakipu'u 'Ohana Easter.....full of love, laughter and memories.
So much fun having all the kids around for the massive Easter egg hunt....and just being surrounded by so much love....
For sure highlight was getting Ka'aumoana on the water for the first time....

This wa'a in particular holds a lot of different meaning for plenty different folks and for plenty different reasons......for me personally Ka'aumoana is a reminder of my FUTURE, after being blessed this coming weekend at the Kualoa/Hakipu'u Canoe Festival and sharing the waters with Hōkūle'a this is the canoe that will be moved over to the Disney Aulani Resort and once I am able to be back at work this is the canoe I will be working on I CAN NOT WAIT!!!

So that is pretty much a quickie "catch up sesh" - am getting sleepy and should ride the day at a foot infront of the other....I am marchin on.....



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