Frustrated....

I'm sure you picked up on my previous post how frustrated I was last weekend with the crap on my face and the crazy arm pain.  And I hate feeling this way, and hate even more posting about it, cause I feel like a whiner when I do.  I'm tough, and I can do this, get through this, but doing it with a smile on my face is getting to be tougher than I really am. 

I started my new chemo drug, Taxol, on Tuesday, and will get it every other week with my last one being July 13th.  Woo-hoo, an end in sight!  So, as I am asking my fabulous NP, Jennifer, what comes after that?  Follow up when/how/bloodwork/scans/how often?  And she proceeds to say
"well, after your radiation treatments......"
Ummm, no.  I stop her.  I was told NO radiation.  By three docs-one surgeon and two oncologists. 
She was shocked, to say the least, that I was told I wasn't getting radiation.  She said they always to radiation on node positive patients.  Especially since my nodes were macrometastatic. 
Aha!  That's where that word 'macrometastatic' has come back to haunt me from my pathology report. 
When the surgeon and the first oncologist we met said I wouldn't need radiation we didn't have my path back yet.  BUT when Dr Sheehan talked to me about my treatment plan, she said I wouldn't need it either, and she had my path report in front of her!  Ugh!!  Double frustation!!

So Jennifer dug through my chart to see if she could find any notes about yes/no/maybe on rad therapy, but couldn't find anything.  She is going to chat with Dr Sheehan and find out for sure for me this week.  If I do have to do radiation treatments, it could add 6 more weeks onto my treatment plan, putting me into September before I'm done.  This is where I really feel like a whiny person, but somedays I don't think I can get through  the day, let alone think about adding 6 more weeks.  And I'm lucky-there are many, many people out there who wish and pray their cancer treatments were done and over in the (roughly) 7 months of treatment I will endure, and here I am complaining.   Complaining about the treatments that will help me actually put this in the past, and cure me! 

AND, it appears that the rashy ick on my face indeed was shingles, and the arm pain is directly related to the shingles irritating the nerves that run down my arm. 
Good news?  My face is darn near all cleared up.  
Bad news?  My arm still hurts like hell.
Badder news?  My arm pain will likely not get any better through the rest of my chemo treatment, because a common side effect of the Taxol is peripheral neuropathy and joint/muscle pain.   They gave me a script for some Neurontin to help with the nerve pain in the meantime. 

The biggest suck about this is how well I have been feeling lately.  Until the arm pain and the shingles, I had been feeling great.  Been taking evening walks with Hailey-about a mile and a half-not too much, but some good outdoor exercise.  Eating way better-even though I have no appetite for anything in particlar-been making chicken and salads for dinner, drinking more water, limiting my soda intake to 1 a day if any!  I even dropped 4 pounds!   Brian got all of us a family membership at a new gym opening up near us, and I was looking forward to starting up a regular exercise regimen. That way when my chemo is done, I could start up with some hard core training again, so I can get ready for my reconstruction surgery in the fall. 
I feel like I get a couple steps forward, but then something happens and I fall back five!  It's times like this where my good attitude is something I really have to work on.  Besides that, I know if I start crying about it, I won't stop.  Maybe not ever.  And I'm sure that's not good in helping clear up my stress induced shingles outbreak either!  So, if for no other reason than vanity, I will suck it up and trudge through.   I have so many positive things in my life, I'm going to make the most of those and stop worrying and fretting about when I'm done.  It is what it is, and when they tell me I'm done, I will be done.

So, back to my new chemo drug-Taxol.  I mentioned above that I will have peripheral neuropathy, which is numb, tingly, cold feeling in my hands/feet.
I should have less nausea, so much so that I am not even going to be taking the Emend this time around-they say I should be ok with the Zofran and Compazine.  The Taxol will affect my white blood cells, and they do expect those to drop, but I will also be getting the Neulasta shot to help counteract that.  This drug will affect my hemoglobin, so they will watch that closely and if it drops too much, they can fix it with a blood transfusion.  It seems the worst side effect is flu-like, achy pains all over my body which they say hit on days 3 or 4 after chemo.  Tomorrow will be day 3, so if I can't get out of bed tomorrow....
Another downfall is that it takes about 3 hours to infuse the Taxol, and that is after vitals. wait. port access. wait.  labs drawn.  wait.  meet with NP.  wait.  pre-meds.  wait.  Then finally the three hour infusion.  I spent 7 hours at the cancer center Tuesday, and that is darn near exhausting and draining in itself!  My wonderful Dad went with me this time, and he even got a little snooze in while I finished my Fifty Shades of Grey Series! 

Enough with me.  Brian has a follow up appointment with Dr Saterlee tomorrow which should be his last appointment with him if all goes well, and he's pleased with his progress.
Parker leaves for Canada tomorrow with the Williams for his fishing trip.
Hailey has a babysitting job tomorrow and Friday, then volleyball camp and conditioning next week.
Ethan had a follow up in Allergy/Immunology today-all is well with him, just has to get some lab work tomorrow to check his Igg, albumin, liver function tests and complete blood count.  Nothing out of the ordinary-just yearly labs because of the immunoglobulin he takes. 
Great news is that Friday we have a social worker visiting us to do an intake interview to see if he would be eligible for the Lopez Waiver.  If he does qualify, we go on a waiting list, but once his spot comes open, he receives benefits through this private waiver which would pay for his formula, diapers and the other out-of-pocket expenses we have for him-up to $20,000 per year!  Once accepted, it usually  takes 2-3 years on the waiting list.  But once he is on the waiver, he is on it until he is 18, or passes away if that were to happen before he turned 18.  That would be a huge relief for us, as right now we spend about $23,000 per year out of pocket for his needs!

Then Saturday is RIDE DAY!  Yeah, can't wait!  It looks like good weather for the day too!  We are so appreciative of everyone riding that day in support of us and the Fire family in need!  Another reason I hate to complain about any of what I'm going through, when people have been so kind and generous to us! 

And of course my awesome co-workers!  I stopped by the NKCH today to say goodbye to Mary Beth, one of the CT techs I work with who is retiring tomorrow-she will be greatly missed!   And my supervisor Cheryl who is going to be out most of the summer with a huge back surgery she is having tomorrow.  My love and best wishes to them both!  And I can't put in words how fortunate I am to have the job I have, especially after having to tell them I may need 6 more weeks of someone working my shift in case I do have Radiation, and them just waving their hands in the air and telling me not to worry about it-whatever I need to do!  A huge thanks to those who are volunteering to work my night shift all this time, and now even more!   And the cards and gift cards from everyone sure are helpful when my paycheck only has 8.25 hours on it!  I love you all! 

No more Debby Downer post-gonna shake this off and slap a smile on my face and get through this.  I said I was doing this one time only and everything it took to ensure my greatest chance at a cure, and I meant it.

So really, what other choice do I have???

:)

It's not a real GNO til somebody ends up in the ER...

Yep, and that someone was me.  of course.

Flashback to Thursday and the 'cellulitis' on my neck, which they are now thinking was is shingles.  A new area popped up on my cheek and my NP just wasn't sure so she gave me some cream to put on the new area that is typically used for shingles and lo and behold it actually started clearing it up right away. 

While I was there I told her about this nagging pain in left arm that has been there since last Saturday, thinking it may be associated with the shingles.  It is a pain like feeling in my left shoulder which goes all the way down my arm to my hand and makes my hand fall asleep and numb and tingly.  Since my left side is where my port-a-cath is, she was concerned I may have a clot in my port. 

BUT...let's wait til Tuesday the 29th when we need to access it for chemo that day and see if it doesn't work, and if it doesn't THEN we will check it out.
In the meantime go home, cause it's a three day holiday weekend and if it gets worse go the ER....oh, and start taking an 81mg aspirin.

So, pain and all, the girls and I head to dinner and then to hear the Cherry Bombs play.  All is going well, having a great time, getting hit on by a guy whose wife is pregnant, almost getting caught up in the middle of a bar brawl and ending up with blood on my shirt and my new scarf, almost starting one ourselves over the skinny, no teeth, tatted up crack ho who decides she's going to take over our table while we dance (think again sista, cancer or not, I can and will still kick your ass) having one of our group be hit on by a 78 year old man with a bachelor party group....you know, just your average GNO.  Well for us anyway. 

It really didn't start going downhill til the Waffle House.  Andrea, Tricia and I decided we needed to grab some breakfast before going home, what better 1am cuisine than Awful Waffle??  Right after we boxed up Tricia's waffle to go home for her girls breakfast, I started getting terrible pain and heaviness in my arm.  And my upper chest, and in my shoulder-front to back, and losing my grip, and wincing with the pain so much that it would kind of take my breath away. 

After much coaxing by Andi and Trish-off to the ER we go, only with me not driving now, probably not a good idea since just having my arm up on the steering wheel was killing me, not to mention the whole digit numbness thing. 

So, we got going with the work up;
CT Chest to rule out blood clot in my lungs.....normal
Ultrasound of my arm to rule out clot in any of my arm vessels......normal
lab work......normal
EKG......normal
Normally I would love normal results, but this time it sucked cause though I wasn't going to die from a blood clot or heart attack, we still didn't know what was wrong with me.  And my arm hurts.
Got some Dilaudid.  Got some more Dilaudid.  Got nauseated.  Got some Zofran.  Puked.  Got some Phenergan.  Got seriously loopy crazy.  Got to go home. 
My ER Doc called the on-call at the Cancer Center and he didn't have any other suggestions to try.  We had ruled out all the big bad ugly stuff-go home and come in Tuesday.

So, I pretty much slept all day today, and my hubby filled my pain med script and my muscle relaxer script, and neither really help, I just cannot get comfortable.  Guess I will wait til Tuesday and see what Dr Sheehan thinks.

I want to thank my entourage for escorting and staying with me at the ER-Andrea and Tricia, Aaron, and Andrea's hubby Troy.  I'm sure I was quite a sight with my bald head(took my scarf off when I got really hot and puky) and two policemen with me.  Brian was stuck at off-duty and couldn't join us, so my stand in hubbies were there for me!  Thanks guys!  And of course thanks to my fellow rads who scanned and sono'd me-Shannon, Kristi and Stacey!  And my ER doc-Dr Niedens-a fellow PD wife and awesome ER Doc.  I think Dr Niedens was as frustrated as I was not being able to figure out what was going on.  At least she was kind with the pain meds!  And should I need, she is in the ER for like the next bazillion night shifts, so I'm covered there!  And couldn't forget my RN-Jason who was great and quick with the puke bag!  Thanks so much for all your hard work, apparently it's just my bad luck curse.

Or somebody with that damn voodoo doll of me with a big pin stuck in my left arm.....

Seriously, enough already!

Yep, I've just about had it.  With this cancer thing, and all its lovely 'side effects'.  Now don't get me wrong, I know I'm going to sound like a whiny bitch here, but I'm gonna go ahead and wine whine.  I think I deserve it. 

Whining and the wine that is.

While in Florida, I did fabulous-got a brace for my gimpy knee, put on my biofreeze daily and took my Naproxen and I made it. 

I took my meds and ate small meals to avoid the nausea.

I wore a hat and big celebrity sunglasses and slathered myself with sunscreen 2-3 times daily since I know the chemo makes me more sun sensitive-more than I already am.

I guess the one damn thing I did not account for was the Florida bugs.  Apparently they have lots of little buggy bugs, and one bit me. 

 I remember when.  It was right after we got off the Popeye River Barge ride and we were all soaking wet.  I remember absentmindedly scratching at a spot on my neck and coming away with a little black bug.  Not surprising, I was wet and sticky and I'm sure smelled just bugginly delicious to him.  No big deal right?  Wrong.  By Monday last week I had a rash where that bug had bit me, and a bunch of red raised blister looking things.   

Ok, triple biotic cream, anti-itch cream, benadryl and I thought I was good to go because it *kinda* started to look better.  I have never had a bug bite do that to me, seriously?

Of course I wasn't good to go, who the schmuck was I kidding????

This Monday night I was reading and remember scratching my left cheek-clarification-face not butt.

Within 15 minutes Hailey looks at me with horror on her face as if I had just sprouted a second head. Upon looking in the mirror I see those same familiar blistery looking spots on my cheek where I had been scratching-and now it's a hot mess red color. 

LOVELY.

So I wash my face, apply a warm soak with epsom salt, then a cool pack, then top it off with some anti-itch cream. 

Woke up Tuesday morning and it actually looked better.  Well shucks-did something just really work in my favor?  HA HA HA said the Gods.

Wake up today and though it looks 'ok', as the day went on it turns into a red, raised, hot to the touch, oozing, size of a fifty cent piece mess.  Even more lovely. 

Call the cancer center and they damn near freak out.  Since my immune system is so jacked up right now, they are pretty sure my bug bite has turned into a cellulitis.  Off to the pharmacy for some steroids and antibiotic.  Though it does look and feel a little bit better tonight-after a cocktail of pink lemonade Crystal Light, 6 Methylprednisolone tablets and two Doxycylcine-I'm hoping to wake up and it be gone.  HA HA HA-in my dreams.  Because if it isn't better in the morning I get to go to the cancer center for them to see it, and possibly admit me for some stronger antibiotics-intravenously.  Just what my Thursday agenda called for. 

All my oozing, freak, horror show face issues aside.  I have to mention that the Rifle Raffle winner was pulled by me last Monday at the KCPD Care Team Golf Tournament, and the winner was .....

Chad Pickens.  Chad is a very nice guy, and after posing for a picture with me and his new gun, he handed it back to me and said he wanted it to be auctioned off for more money to help us out!  I hugged the poor guy and probably scared him with my death grip.  One of the nicest things anyone has done for us.  The silver lining of this cancer cloud that hangs over my head?  Ok, I should say the silver lining of the black cloud that seems to loom over the Rawley family-is the kindness and generosity of people.  We are blessed to have such amazing people in our lives, I can't say that enough.  And the biggest thanks ever to Troy Phillips for setting up the whole raffle, selling tix, recruiting people to help him-Onik, Garth, Hooley-I know I'm missing more people-but those three I know really stepped up to help-a huge thanks to them also.  And to SnapShot guns for doing the deal with Troy to get the gun in the first place.  Need a gun?  Check out Snap Shot in NKC!!!   Thank you Troy and Andrea-we love you guys lots!  The Raffle brought in over $8000 so far, and the auction will take place on Friday June 1st.  If you are interested in the auction please read below and email Troy:

Due to the great generosity of Chad Pickens, the winner of the “RIFLE RAFFLE 4 RAWLEY”, we will be offering the rifle up for auction. All proceeds from the auction will be donated to the Rawley family in addition to what was previously raised from the raffle. The auction will be held by email on Friday June 1, 2012. Bidding will begin at 0800 hrswith a starting bid of $350.00. Those that submit bids, a return email of the highest bid will be emailed back every 2 hours with the last update at 1900 hrs. Only those who have submitted bids will be sent an update. The highest bid at 2000 hrs will be the winner of the rifle! The rifle is a new Stag Arms AR 15, Model 2. It also includes the case and one 30 round magazine. Non department members are welcome to bid as well! Bids and or questions should be sent to:

FPhillips@KC.RR.COM

 

And don't forget the motorcyle ride is Saturday June 2nd.  There is still time to register at

www.kcgunsnhosesride.com

A bunch of us are meeting at First Watch in North Kansas City at 8am before the ride-everyone's welcome to join us! 

Summer is almost upon us-geesh where did the time go???  School is almost out for all three kids-Ethan's last day was Monday, and he has already let us know how boring we are at home.  He got to spend some time with Grandpa Tuesday, but I think he was just a crabass-hoping that changes pretty quick, cause summer school doesn't start until the 18th.  It will be a long three weeks for him if we have to lock his skinny butt in his room that whole time....Just kidding....mostly.

Hailey and Parker are done on Friday, then Parker leaves next week for his Canada fishing trip with the Williams.  Hailey will be working hard at volleyball camp, and practicing her mad driving skills

My chemo break is almost over, and the new stuff starts up next Tuesday. 

 Hoping this crap is off my face by then.....

yeah right.



Just a pic of my things....

And all our wishes came true....

This will be a long blog post, due to the fact that I couldn't get my pics to download to my computer while we were in Florida, and I didn't want to post without these gorgeous pics!
But don't worry-it's not a lot of reading, mostly fun pics!

I will start with Sunday the 6th-the day we left KC and Ethan took his first ever plane ride!
Ethan's Make-A-Wish wish granters Marita and Stephanie came to see us off and brought with them a pretty blonde girl...

Of course he got kisses from that blonde gal!

Lots of family and friends came to see us off too!

As far as Ethan's first plane ride, he did pretty darn well, as long as he could look out his window

And listen to some tunes from his other fave blond gal

The resort we stayed at was Give Kids the World, and was geared towards kiddos all the way. 

Our home for the week was villa 123. It sure was convenient to pick up the phone and order a pizza, or drinks or rotisserie chicken dinner for all of us after a long day at the parks!

Breakfast and dinner were served at The Gingerbread House

The other fun places on the resort were the Carousel, which of course looked like a polka-dot mushroom!

The Train Station, where there were games, a huge model train set up,

mini-put and remote boats to drive

The Castle of Miracles

Where a star with Ethan's name on it will forever remain,

 along with thousands of other special kid's stars

Monday we were off to Magic Kingdom and a meet and greet with three beautiful princesses!

Ethan really liked looking at Cinderella's sparkly dress

And might have even started crushing on a brunette; Belle....

Of course, it was right back to the blondes once he saw Princess Aurora

And we left the castle with no less than a head full of Princess kisses!

At Hollywood Studios Brian and Hailey had no luck talking Parker into riding the Rock and Roller Coaster once he saw how fast it took off

And Ethan was super fascinated with the green Army man

At Epcot we rode Spaceship Earth-Ethan's very first 'roller coaster', and got to see the flowers and shrubs shaped as Disney characters

And we shopped for some Mickey ears for the kids

Sea World brought hungry, barking sea lions waiting for a snack

And we could never miss the Shamu show-from the front row of course-right in the Splash Zone!

These two killer whales were actually pretty sweet. 

On each other anyway

Our first visit to Universal Studios was awesome! What an amazing place, with some really cool people and rides!  There and at Islands of Adventure, the cast members were so helpful and once they spotted Ethan and his big blue button, really rolled out the red carpet for him!  We were offered drinks, snacks, gifts, private pics with characters, and a great time was had by all!

Once inside Universal Studios it was picture time with some pretty cool friends,

 starting with kisses from the crazy monkey himself-Curious George

Then on to Woody Woodpecker and his girlfriend Winnie

Shaggy and Scooby Doo

And a crazy family, much like ours, The Simpsons

The Shrek 4D show was incredible

We also enjoyed Twister-a movie quality show from the movie Twister, complete with wind, rain, fire and moving platform that made us all jump!

We had lunch at The Monster's Cafe next to The Creature from the Black Lagoon.

We experienced a flood, fire, subway car derailment and black out on the Disaster ride.

Brian and Hailey rode an insane roller coaster called the Rip Rocket.  It took you straight up, then straight down before a series of crazy loop-de-loops and upside down spins and twists.  A ride Parker and Ethan and I just watched comfortably from afar.

The crazy coaster riders also rode The Mummy ride, and I wanted to ride it, but my stomach just wasn't feeling anything too crazy that day, so I held off. 

The Men in Black ride was fun, but I would have to say the ET Ride was definitely the highlight!  Ethan loved that ride and couldn't move his head fast enough to see all the special effects. 

The Super Stars parade featuring Gru, the girls and the Minions topped our day off!

Our final day in Florida was spent at Islands of Adventure, where once again,

Ethan was treated like the true hero he is. 

Once inside we headed to Seuss Landing, where we got a special back stage visit with Cat in the Hat, Sam I Am,  Thing1 and Thing2, The Lorax, and the Grinch.  They were so wonderful to Ethan, spending lots of time with him, holding his hand,

 rubbing his head and posing for hundreds of pictures.

Once in Hogsmeade, it was much the same as Seuss Landing.  As we were wondering around admiring all of the town, we were approached by some cast members who invited us to Ollivander's magic wand show right in the front row!  All four of us rode Harry Potter's magic wizard ride, one I almost didn't ride, but am sooooo glad I did-it was amazing and fun!  Hailey and Parker rode the Hippogrif, and the roller coaster daredevils Brian and Hailey rode the Dueling Dragons.  I do regret we forgot to get a glass of butterbeer before we left Harry Potter land though!

We were approached a third time by a cast member for a special photo op with some super heroes!  These special folks spent a ton of time with our guy and us and we got some pretty cool pics.  Storm hugged me right away and said she knew I was a survivor and wanted to make sure she and Rogue got their picture taken with me!  Lots of hugs from the X-Men characters ensued.  Then a handsome Captain America and Spiderman showed up too!

Spiderman, Wolverine, Cyclops, Capt America, Storm and Rogue



Ethan was cracking up at the posing posse of super heroes

The Men

The Women

Parker wanted in on the action with Storm and Rogue!




We thouroughly enjoyed the Jurassic Park ride, the Storm Force Accelerator and the Spider Man ride was awesome!  Brian and Hailey braved the Incredible Hulk ride-another one us chickens sat out from, and we all enjoyed the Popeye water ride-where we got completely soaked-henced the wet clothes in the above pictures! 

It was a magical trip, and though it took me three days of sleep and rest to recover from, one I wouldn't trade a thing about!

Thank you Make-A-Wish, you made all our wishes come true!
now back to the real world.....