"Chemo Round #2".....



Chemo Round #2 Monday Feb 27,2012

Had my second round of Chemo this past Monday......Was a loooong 9 hour day. Par for the course, when we arrived there was a bunch of "stuff" that should have been done ahead of time that had to be done prior to chemo infusion......lil'things like checking my counts.......seeing the doctor....blah blah blah.....So actual infusion started about 2 hours late......no worries/no stress.....par for the course....!

Of course as luck would have it the "financial patient liaison" showed just prior to start of chemo infusion....this got my b/p upwards of 160's/110's.........grrrrr arrrrgggg......long story short my new and improved Medquest Application will be filed tomorrow and in something like 30-45 days??? I'll know if I am approved for March....be easy to say "of course I'll be covered now".....But we saw where that got us in February......

Icing on the "medquest cake" is I am scheduled for a CT tomorrow afternoon because of a constant headache and some dizzy spells I been having since last Friday.....small kine concerns about blocked vasculature (troubles with blood flow to and from the brain).....Radiology Department just called to verify appt.....asked what insurance I had and when told them it was still pending they informed me I would need to pay $1200.00 up front tomorrow before they would do me and then they would bill me the rest.....HA HA HA HA HA HA!!! .....funny right?!?!? I explained the situation with Medquest to them as well as why CT necessary ASAP......they called Doctor who's assistant called to inform me my Onco is currently on a plane and unavailable.....trying to get the covering MD to approve the "emergent" nature of the CT......waiting on call back now......

I THOUGHT I WAS SUPPOSED TO NOT BE STRESSING......??????

Seriously done fighting with these folks, "if can can, if no can no can".......I am over it. Everyone so quick to hop on the "things happen for a reason" when they have nothing else to go on...so lets just say the CT will happen when it does for a reason......all in agreement.....AYE!!!

So let's get back to "chemo Monday".......finally got the infusions up and going ....was given a bunch of pre meds.......these are things like tylenol, benadryl, steroids....meant to "ward off" of lessen degree of possible reaction to the Chemo......3 of the chemos run on the pump....funny thing is because (although losing plenty weight) I am still too "muscular for my port.......so if flexing, using my right arm for things ....pressures go up on the pump and it will stop infusing...this means gotta wait for the nurse to come re-set the pump......after scoldings I got while inpatient and reset my pump no way I am going do it in clinic!!!!! So I have gotten pretty good at hearing the first alarm and "assuming the position".........

Yup.....right hand on top of the head.....running joke is I am going have someone knit me a skull cap with a glove sewn into it that I can wear during chemo infusions!!!!  And YES I see it again too, this is like 3 rd pic where you really notice the 2 different colors of my eyes....its always been there sutler.....had to be pretty close looking into my eyes to notice (so obviously there have only been a few to witness - ha ha ha ha)......not sure what its all about......me morphing into my "Supah P" powers?????? I decided if I do get superhero powers out of all of this I WANT THE ABILITY TO STAY UNDERWATER WITH OUT HAVING TO BREATH.......was going to say I wanted gills but I always think of Kevin Costner in Waterworld walking around with the big vagina's on the side of his neck.....NO THANK YOU!!!

How's my "kool-aid chemo".......pretty much comes out the same color...just a little more diluted...don't worry I haven't taken a pic of the (yet)....ha ha ha ha!!

So Chemo all in.....no fuss no muss...was a long day, glad to have Kawika at my side all day to keep me company, and my visits from Malia ....especially when she dropped off a huge batch of homemade chicken soup......

Ono-liscious....broke da mouth soup!!!


Was the perfect post-chemo meal....and actually just finished a batch for lunch...its a chilly grey day here in Hakipu'u.....
Okie back to the chemo story...

So.....Chemo pau....first thing I noticed different this time than round #1 was the nausea hitting during the infusions....no biggie popped a phenergan and was all G......at end of it all just before headed out the door I hit the bathroom, knowing I had been socking the fluids all day and we had a bit of a drive home......on way out of br I stop to "check my bad ass bald self" in the mirror ......and notice a rash spreading out across top of my chest.......DAMN IT!!!!

Back in the stall (spot they put you in is like a horse stall..."CMH nurses think the alley" with thinner walls)  had to re-access my port and give a big fat dose of steroids.....rash gone in 15  minutes.....out the door as soon as de-accessed......time to get home !!!!

Stop on the way to pick up medication....waiting on scripts and next phase of "chemo side effects" hit.....that nasty all telling "gurgle down there"....crisis averted.....remembered the "every fart a potential game of Russian roulette" I learned round #1.....squeezed real tight and made it home...without incidence......

With round #1 I made it at least 24 hours before side effects kicking in.....and actually felt "good" first few days......Round #2 the not so lucky......

First to hit was the nasal congestion, runny nose, sneezing......lots and lots of sneezing......I missed reading about this "common side effect" of the Cytoxan when doing my chemo learning..... the constant sneezing while your about 10 PSI away from a major shart.....not the best situation one finds themselves in......

Nausea came back but I "caught it"with another phenergan then bumped right up to Zofran.....

Had the full on chills and flushing ...thank you Rituxan

And the the pooping started....no need go into details on that....it started and I thought it would never end......any Nurse knows you are quickly approaching rock bottom when you are layering your own bed with chucks and saying a prayer to St. Deficatious that no "accidents" happen while you sleep.

Slept came...thanks to the Valium ;)  got a whole 5 hours heavy sleep.......woke thinking I would be feeling better ...just like round one....but NOOOOOOO ....gotta go and switch things up...keep me guessing......bam hit the ground running....well hit the porcelain got running...now not sure to sit or bend over it first......whats going to hit first.........thought about just laying in the tub and letting it all take over........ponied up.......barfed, wiped mouth, brushed teeth........had a nice long "big boy" sit down........nuff said....time to get on with the day..........

Look in the mirror and looks like I been out in the sun......FLUSHED.....worried I had a fever.....SCORE....afebrile.......little more research....flushing is secondary to all the steroids I had taken the day before..........uh oh....overdue for my big daily dose of steroids......these I take for days 2-5 after chemo..... The steroid Predinsone has a crazy way of making you feel restless  and a false feeling of "well being"......I refuse to talk about the potential acne and moon face (it is NOT going to happen to me)........so for a few hours after taking I get the feeling that can only be compared to Bill Baxter turning into the Hulk....tons of nervous energy, can not focus, eating anything not locked down......15 activities at once......1500 thoughts racing through my head at once........

Believe me that is the LAST time I wait to take the dose in the afternoon......no matter how nauseous in morning gotta get some food in and get those pills down!!!!!

I have allotted 2 hours a day of "work" meaning 2 hours of phone calls/filling out papers/ faxing etc etc.....figure what better time to be "Hulking".......one of these days I will actually hold myself to the 2 hour limit....

I was impressed to get follow up call from my Chemo nurse to see how I had been doing....and felt better when she reassured me that everything I was "experiencing" was kinda to be expected.....just gotta stay strong and push through.....she was great at giving me little pointers and offering some care/support.

Actually had a good night sleep last night...only up once.....a record for the past month....was nice and chilly in Hakipu'u ....good sleeping weather....and now it's gotta be Enya playing all night to "pacify" me.......

Got up this morning......dressed, pills in, dark gray COLD!! But I promised myself (and actually had to sign a contract at chemo clinic) that I would walk at least 15 minutes everyday.... out the door......sitting down to get my VIBRAM FIVE FINGERS (product placement) on they do great protecting my feet from cuts crossing the water and walking the beach, while I still get sensation of being barefoot..........As I am sliding in my left foot my entire foot locks in pain, felt like some one shoved a pipe up the bottom of my foot......pain to wiggle my toes........." NOOOOOOO I thought I would go a few rounds if not my whole course without meeting up with the dreaded Vincristine side effects" ........"and what the hell happened to the early warning signs of numbness/tingling of fingers/toes before the full on cramping pains..........

Decided the "side effects" weren't getting the best of me today, too grey and chilly to not get out for at least a bit......so kinda half dragging my "stumpy foot" on my walk I went....crossing the water and the mud was a challenge......but slow going and realizing I had my new iPhone in my jacket prevented me from falling in.....on the beach and off I went......felt good to be out and gave me a great chance to decompress and rid my body of some of the excess salt water that its been holding onto........got to love those peri-orbital outflow valves yea?!?

Happily as day had gone on and I have kept myself moving.......the pain has lessened to more like a pins/needles - falling asleep feeling walking much easier.........not ready for the whole cane thang"....

So its just cruise time, sofa surfing, napping, day.........sorry not so full of quick whit/ humor ....yah get what I got to give ya!!! ha ha !!

Follow up phone call.....I need to go in to meet with the hospital financial services tomorrow BEFORE  we can progress with CT's and treatments..........I wonder if I should bring them a rock they can teach me to squeeze water from........upswing to that is they share office space with the folks who dropped the ball and got me declined benefits for February.......good times.....

Lots of Love and Aloha to you All

P