Hoppy Easter Sunday!! :-)

Happy Easter everyone!! I hope everyone had a beautiful day in church and a fabulous Easter Sunday! 🙂

My reflection…
Holidays sometimes seem to make me reflect on family.  I am so very grateful for my friends and the amazing ones in my life whom I consider family.  I do get very discouraged when I think of my real family and just how dysfunctional it is.  I know almost everyone I know can say their family is dysfunctional and how they need a good amount of alcohol to get through family events and they can talk about family drama and such.  Yes our family is no exception but sadly mine isn’t even a functional family like most know.  I mean, if I had a daughter or sister …even relative and they had said to me that their beautiful young self was diagnosed with Stage 4 metastatic pancreatic cancer, I would be devastated.  I would do everything I could do to be with them, see them and help in every way possible and I suppose that is just the kind of person I am.  I believe in loyalty and trust.

Sadly I don’t have that.  I am very envious when I go to events and I see big supportive groups of families.  I am also very happy for that person.  I know that I have an amazing network of great people who are there for me even if they aren’t blood.  Sure it’s a little different when it is blood.  I mean my family has only came to see me ONE, yes O-N-E, single time and that was when I hospitalized when diagnosed because I was SO very bad off when finally visiting the ER that the doctors didn’t believe I would come out alive.  My husband told my parents that they better see me before I died otherwise they wouldn’t have came.  I don’t know too many who could understand that situation but it’s my family and it’s what I’m used to.  If you know the song “You find out who your friends are” and think of it as people who drop everything to help and would never see whats it in for them, think of the very opposite and that is what I am talking about.  I was the only one who tried to bring everyone together and make things happy but I cannot do it any longer when I am 1000 miles away and in the biggest fight for my life.

I recall when this nightmare began, my world stopped.  Everything just stood still when those words were said for quite a while and life changed in an instant.  I have heard this from so many.  People say “my life stopped and it’s like everyone else was talking about their life and their life was moving but mine stopped”.  Same here!  I thought of how my parents and siblings were going about their day to day life like they have every day while this solely affected myself and my husband, our life stopped and was going in slow-mo as we tried to comprehend it all.

As I said, this is all I know though and for that I have the tough skin.  I am very strong because I wouldn’t know what it’s like to lean on someone, now or ever since I moved out at 18 and have done it all alone.  This whole experience has been done alone.  It has been solely my husband and I.  If it wasn’t for my husband I certainly would be dead. Between emotional support, education and financial it has only been Tim who has done it by himself.  We had to take on this head on my ourselves, educating ourselves and figuring everything out on our own.

My husband even said today, hmm… I wonder if they (my family) would even come to your funeral?   To me I think why?  Why would these people come out of the woodwork to see you when you are dead if they never visited you when you were alive and lived in Massachusetts, New Hampshire, Maine, Virginia and Washington, DC?   Ehh but if you think about it how would they know if I’m alive or dead now?  I mean they don’t reach out to me whatsoever nor visit, I suppose they stalk me on Facebook.. ha!

With that said, never take what you have for granted if you are fortunate enough to have amazing family in your life.  I do not take those around me for granted and I try to show everyone that comes into my life (and stays there.. haha!) just how appreciative I am.  My in-laws are amazing!! I also have my friend Jamie and definitely take her family as mine (love you hun!! xoxo).

Reflection done…
My reflection is DONE!  Sometimes I gotta throw in a serious topic, ok actually this whole fighting is SERIOUS more than probably anyone could understand but…..back to my reality.  Reality is that Easter dinner has not been pleasant on my body!! Oh no no, my pain is just acting up like crazy and  I’ve taken enough pain meds and still in pain.   Not fun! Easter was so lovely although it is rainy and cold here in DC and yesterday was the kite fest downtown which is part of the Cherry fest… very good and blessed weekend. 🙂

Then guess what?!? Tomorrow is April FIRST!!!!! haha, I am just so excited because though things changed and I get to spend some time home… AMEN!!!! It is going to be such a great month!! I pray and pray for it to be a good month for me and my changes in this blog will happen!!  I want to change it up in terms of recipes and helping those new to my blog understand pancreatic cancer moreso… like how a pancreas works!  Also about a CA19, the Whipple that I would be SO fortunate if I’m lucky to have one day, etc.  Just want to make it all cooler and also how a little more of my world.  I mean, you don’t think I post everything on here do you my silly friends??  No way!  I only post 1/8 of my daily life, daily, so maybe I’ll add a little more. I actually find video blogs easier so video blogging me making my cancer kickin shakes and cancer kickin exercises (uh oh.. I’m on to something!) as well as fun stuff to do!    Ok….. done being a ramblin’ man!!

One more thing!  My mom texted saying her and my dad had a dream about me last night which is funny because Tim said he had dream about me last night too, actually he woke up in tears because in his dream I DIED!   Not even from cancer though.  Geez, anyone else have any bad dreams about me?!  Goodness!  I’ve only had one bad one which was a while ago and it was about my little sister dieing, that was terrible!    I have SO MUCH ENERGY tonight even though I hurt. Strange huh??  My constant chronic pain comes from my spleen which I will do a video blog on for everyone to understand my spleen situation and to once again reiterate why I CANT have surgery to have the useless thing removed. 🙂   The energy isn’t even from sugar either, I promise!! haha 🙂  I guess I am looking forward to the new month as a new year with lots of good things to happen and accomplishments to be achieved.  I hope everyone had a marvelous Easter weekend. 🙂

xoxo ~Ashley

Good Friday…good for me! :-)

I hope everyone has a great weekend and a Good Friday!! 🙂   I actually had some weird dreams last night that I was starving, weird to have dreams of wanting to eat but I think it’s because my taste for food came back and I just wanted to get out of bed and eat apparently… haha! 🙂

I feel toxin free and I’m ready to have a wonderful 13 days before I’m back to the hospital and heading out of town.  Have a great weekend my friends!
xoxo ~Ashley

I’m tired.

^Ok so I forgot about this pic.  Last week when I was hospitalized my dear friend sent her amazing Australian CHEF husband to our room with food he prepared just for Tim, oh! and a beer.  I was VERY jealous since I was fasting and my husband cannot have the hospital food they bring around, no, instead he gets pampered with some deliciousness. Ahh!  Of coarse he didn’t save any for me when I was able to eat… ohhhh nooo….  haha, what can ya do. 🙂

Just to warn ya, this post is lame.  I really do not have a single thing to talk about or say about today because I have simply been tired.  I didn’t sleep well last night, loss of toss and turning and I’ve been out of it today.  I couldn’t really sleep in the day but then again I felt too tired to do anything.  I did have the good voice in my head that said “Ashley, don’t worry about doing a single thing… it’ll all be there tomorrow, worry about your rest” which was great!  I didn’t feel obligated to do a bunch of things which has always been a hard thing for me.  I am working on it every day, just remembering what I am fighting and that my things I have “to do” that are so urgent in my head are not as important as my health.

I had some darn pain today and took meds for that which makes me tired.  The same meds that I would take 10mg of would make me so energetic and I truly felt they were energy pills with the benefit of taking the pain away and now with a dose higher that is needed, they only make me drowsy.  Very annoying.

I found out today that 2 out of my 4 out of state trips planned for April were cancelled which I am happy about!! I know some people may think it’s crazy but I am not one that likes being away from my own bed for an entire month PLUS being hospitalized all last week and chemo this week means I’ve been down for the last 2 weeks.  I do need time at home finally to catch up with life.  The unplanned surgery messed up my chemo days but it’ll all work out.  I actually had to change the next 2 times for different days because I cannot have it interfering with my social life.  haha!! It’s one thing to have to do the darn thing but it’s another when it interferes with very important plans.  🙂   Ahhhh then…  I have a to-do list that has grown and I’ve got a whopping 13 days to complete it.  Awesome.

Well I made dinner, walked the dogs and now I can get to work with whatever the hubs is bothering me to do… later!

xoxo ~Ashley

Just another hospital day…

Me getting chemo on Monday

^ There is me on Monday during chemo… don’t I look thrilled…

Today started bright and early in the hospital.  Ugh! When you just received a 12hr treatment on Monday then you are ick Tuesday the last thing you want is to go to the hospital at 7:30am Wednesday.  Sadly this is my norm and I have to do it.  I get my visit done, told how well I’m doing considering I just had a hard 100% treatment (like every chemo Monday for the past 14 months) and how I’m doing awesome.  Thanks.  I do appreciate it but sometimes you feel like ‘ugh thanks but shoot me now or put me back in my bed, its too early to deal with this with these crap toxins still in me’.

Just another chemo week.  I must say I am doing better.  I guess my “ill feeling” weeks could have been related to my colon hole leak.  The doctors think that it didn’t just happen overnight or anything like that so if you follow me when I thought I was picking up some type of cold-like symptoms it was the bacteria from the colon.  Now that I am patched up and continuing my antibiotics which should clear up the infection, I am doing better.  I am simply fighting the toxic poison in me and being strong.

It’s another week of fasting.  Last week the fasting was NOT by choice and this week it isn’t either but it’s a different feeling.  I always feel just like nothing taste good all week.  I generally lose a quick 10lbs, I drink as much as I can but I can’t eat.  Generally by the weekend my taste buds are back and I start back eating again.  Some people complain about “metallic tasting” by eating with silverware and for me it doesn’t matter if it’s finger food, food just doesn’t sound or look good after chemo. Period! It’s hard enough to just drink let alone eat.  It’s the same thing every chemo week, every month, nothing new.

I didn’t even feel nauseas this week or anything.  I’ve rebound real well!   Actually by the weekend when I’m eating again I’ll be in heaven 🙂  Ok, gotta relax!

xoxo ~Ashley

(Tuesdays blog) Day after chemo…

Sorry I’m late with Tuesdays blog.  Chemo sucked as usual.  I actually fell asleep during chemo more than I normally do.  Generally the dang benadryl in my pre-med knocks my butt out for a bit and I fight it because I don’t like sleeping and not knowing whats going on but this time I woke up at 7pm and the last of my drugs were going through.  Yes my treatments are at least 12 hours long.  I always laugh when the scheduler secretary lady asks about time slots for my upcoming treatments and will say whats available and I think ahh.. 10am wouldn’t that be nice! But then I’d be here till midnight, so that would be bad.  Big OT for the nurses! haha!  I have no desire to stay until Tues am so I always start at 7am.

Anyways, yeah I did better on Tuesday then normal.  I am still getting 100% of my chemo drugs and my platelets were about 200k and all my blood was up and fabulous so I did great there.  I don’t know why I did better yesterday but I didn’t feel too dead to the world.  Sleep definitely helps me a lot!  I come home Monday and went straight to bed that night, since of coarse it was night anyways and was up all Tuesday.  I took it easy and was out early at night.

I survived yet another treatment of chemo! It doesn’t get easier but I’m still kickin’ but 🙂

xoxo ~Ashley

ChemO nO no…Monday (Videos)

Ok fine, it’s chemo Monday.  Even got up on time sucked it up and went.  Actually!! Prior to going to chemo, I did this….

Then had chemo.  Of coarse my Dr. wanted to see me prior to the drugs after labs were drawn and just chatted about how I was doing from surgery.  Yes I got the craziest looks from the seminar thing the other day to chemo about ‘you just had surgery and you are doing so well?!!?’   Yeah 😉  I’m Ashley.

I met up with my friend Michael and talked for a while but after that I went back to chemo and they gave me Benadryl as a pre-med as usual but I was fighting it for a bit then the stuff knocked my butt out until 7pm.  haha!  I woke up like woah?!  It went from busy in the chemo unit to where did everyone go?!   Mine are so long but I was tired so there ya go.

I came home and was out… thats why this Monday post is a tad late.

xoxo ~Ashley

Where did the weekend go?! Come back! :)

Tim snapping a pic of me in my bed at the hospital… just lil ol me!

Hello! Where did the weekend go?! Gosh it went fast! Sorry I didn’t write yesterday.  I was hospital free and just was kept off the internet and when you go from being cooped up in a hospital to free, for me at least, I just want to get away electronics free.  I know I am SO behind in e-mails so I will be catching up tonight, I promise I am not ignoring anyone… it’s just been life.

I went to a pancreatic seminar type of thing yesterday. Hmm… would you call it a seminar?   Maybe not.  They referred to it as “speed dating” where we were in groups of 4 and visited a different table every 10-15 minutes. There were doctors from pathology, oncology, researchers etc. and it was focused on pancreatic cancer with advancement/research at that hospital.  I’m not sure I really learned anything per se since it was quick and when you have a group and not much time with everyone wanting to speak, it’s kinda hard but then again I really didn’t have many questions since I know whats going on with me and I keep up with research and when something is working then there isn’t much I need to know.  I’m fully aware that if my treatment comes to an end that there are plenty of other things I can try so I’ll cross that bridge when/if need be.  I still like seeing what they have to say and seeing what other doctors there are out there especially if I become operable one day or if I become unhappy at my hospital.

I certainly was looked at like a girl with 8 heads though when this guy in our group would tell the doctors that I had stage 4 pancreatic cancer at each table.  I had no problem with him saying anything at all since it’s true but man the looks I get! haha!!  “You?!!?  You are the patient?!?!”  “I would never dream by looking at you that you had anything wrong”  “You were just released from the hospital yesterday?!?!”  hahaha….. can’t say I hadn’t heard all this before… many… many… many times.   True story doc! I met a student who graduated from Michigan State…woohoo!!! I met a dr. who’s from Michigan, WRONG SCHOOL if ya know what I mean, but eh.. he was cool!  I met an awesome surgeon!  I love the “cowboy approach” doctors.   All and all it was good!  Wait until they see me in June, I will get my butt in shape and show them… haha!

Ahh.. I never mentioned what my hubs did!  So, I come home from the hospital and oh my goodness!! HE – washed the floors, vacuumed, did all the dishes (yes dishwasher helped, but still!), did all the laundry to include washing all the sheets, duvet, towels, clothes, dog bedding and toys, scrubbed kitchen, washed the rugs, even little things like washing the shower curtain… ahh! I was VERY impressed!!! He came home throughout the week in the day to take care of the dogs since we cannot let my neighbors do it anymore for many reasons.  Of coarse only small time frames during the day because he would never let me stay at the hospital alone for very long.  I mean I was hospitalized over a month before and he didn’t care if he was sleeping in a chair or told to go home and get rest, he would never go and leave me or ever let me go to an appointment by myself EVER… thats just the kind of guy he is. 🙂   He has spoiled me since our days together in High School so I wouldn’t know what its like to have it any other way.

Anyways my GOODNESS… Friday when I had to get my antibiotic prescription after I was released my jaw almost dropped when I was told I had to pay $250.  Holy cow!! This is for TEN flipping pills!! That was AFTER insurance payed their portion!  Two-hundred and fifty dollars for T-E-N pills?!   No wonder people can’t afford health care.  My other scripts are not that much a piece.  Tim was like, well you can share Tobys antibiotics (remember from the pit bull?? )  hahaha!  YEAH!   After I took the pill I couldn’t keep my eyes open to save my life so it dawned on me that when I was in the hospital, I would feel drained and took a couple cat naps in the day it was after they had started this antibiotic on me to see if I had any type of reaction and that it would work.  If it kept my fevers down and such.  Note to self – take at nighttime!

Tomorrow is CHEMO day! 😦    Damn.   I’ll be down for a few days.  Since I have a Dr. appt on Wednesday, I will be going to my PO box and seeing if I received any checks for my friend Michaels calendars and will then send them out, but since he has sold out I will send out what I have and if I have more checks than calendars then you will simply receive your check back in the mail. You should receive this by the end of this week, ok?  Thanks!

Waiting to see if Tim will be home from work anytime soon because I’d welcome him taking me out to dinner… 😉    …or I guess I will cook, I’m starving! Anytime now….

xoxo ~Ashley

I’m homeward bound!!! (Video blog)

I went from fasting for about 5 days to BOOM “you can eat”!!! Clear liquids was AMAZING and quick without slowly going into food.  Yahooo!!!!  Good behavior gets ya early release! hahaha 🙂  Being strong, feeling good, taking your meds and not being lazy in your room got me a ticket out.  Here’s to the weekend!!!  Back to the hospital Monday… 😦

Have a good weekend my friends!

PS:  As for the confusion from people that e-mailed me and are new to my blog.  I have stage 4 pancreatic cancer – it’s spread all over my abdomen to multiple organs so I am inoperable/incurable.  The goal is the chemo will shrink the cancer to a localized organ (pancreas) and I will be operable.  The procedure therefore was NOT the whipple it was for a hole in my fistula in my colon that was leaking the colon bacteria into my abdomen causing infection.  I had the surgery through my colon to patch the hole.  Hope that clears it all up!

xoxo ~Ashley

Video blog. Just another boring day in the hospital…

If you watched that video above then I’m basically telling ya what I wrote yesterday since nothing changed last night.  I got slept, only interrupted a few times. I did the video this morning… now I am writing this afternoon, I can tell ya it’s been a slow day. Not too much has happened.  They started me on sugar water since I’ve had nothing to eat just to give me calories.  Sugar… feed the cancer.  I know I know, but it’s not enough to change much and I’ve had to have it before so I’m not totally concerned.  I’d rather have sugar water than TPN or PPN.

I left off writing, snuck out and came back to this:

My nurse rocks!!!

Woohoo!!!!!! Love my nurse! Is that cute or what?! Too cute and I can DRINK WATER NOW!!!!! YaY!! I can have juices, chicken broth, my friends mentioned how vodka/liquor is all clear liquids… haha 😉

Well thats my boring day.  I am going for a walk now.  Just letting my colon repair heal so I can have food sometime and be good to go!  Thanks to all my wonderful amazing people out their with your well wish and prayers… I will continue to kick pancreatic cancer butt and not be a statistic!! I started with beating the 30-60 days tops I had to live according to the doctors, then “1 year “statistically at stage 4” which is how fast this cancer takes you, generally weeks and now I am aiming for years and to be operable one day when it is localized solely in my pancreas.

xoxo ~Ashley

I MADE IT… I’m alive!!!!!

Me before surgery and before my gown….

Tim and I right before surgery (yes they snuck him in because they loved me! 😉 )

Me today post surgery! Kickin’ butt!! 😉

I made it out of surgery!!! The report even said “my colon prep was EXCELLENT!”   I got an A++ in colon cleanse!!   Yeah buddy, I took a whole gallon and made my pipes squeaky clean!! haha! It’s kinda like wanting an A+ in school, I like to be an over achiever in kicking @$$!!   That’s me!  I made it out.  I finally woke up from the anesthesia and went to my room to rest for the evening.

I woke up today wondering if I could be EAT or DRINK again in my lifetime and I hear NO – wrong answer.  The med doc even advised possibly being on TPN for 2 weeks.  I have been on TPN I KNOW what this entails and this is the LAST thing I want, I want food!!

I just spoke with my GI doc and ME being ME I said to them:

“Ok, I am going to get the entire GI team and lock them in my room and they are not going to eat OR drink for the next 6 days then after that they are going to go on TPN for 2 weeks….yes that will be 20 days without eating or drinking by mouth. Ok?”

I  am not sure if they thought I was joking.  I’m not.  When I was told 48 hours because the stent needs to embed into the colon and everything and food would disrupt all of that then ok.  I haven’t had anything in 4 days so I can do another. My sweet husband brought me gum to chew or they also brought me ICE CHIPS! Yay!!!!   Gosh, I haven’t been this lucky since over a year ago when I couldn’t eat for months and had a j-tube and I could swab my mouth with food-like water to taste.  What a tease!! I am not a big eater I know, BUT I want something more when I am told I can’t have it so when I am told I can’t beat Stage 4 pancreatic cancer obviously my thought is to show them up! 😉

I am glad my surgery went well. Everyone is always shocked how young I am and have what I have and I get told  “You look like the picture of health looking at you”  ALL the time!!! And people are shocked it’s just Tim and I and no (my) family but I tell them I have all you! I have an amazing support team even if they aren’t people I see in person and aren’t family, they still are amazing and help me. 🙂

I did have a couple friends come and visit me the other day and although I could barely keep my eyes open, I was very happy to see their beautiful faces! 🙂  Actually again today as well!  I also walk around the hospital and see all of my awesome friends I have everywhere here.  It does help to know everyone everywhere you go… I am not going to lie, special treatment doesn’t hurt! 😉

I just DENIED TPN to the nurse soooooo let’s hope no one freaks out, I didn’t do it in a mean way or anything I just said how it causes inflammation, it’s no help and doesn’t trick my body into thinking its full and doesn’t provide any good nutrition so I’d rather fast a little longer.

I ran into my surgeon today who is the most amazing surgeon ever and I love him.  Of coarse he already knew everything and asked about surgery and knew every single thing I’ve been through since I’ve seen him last because he’s amazing like that and genius and advised (well whispered to me and if anyone reading this from my hospital I won’t reveal his name!  haha)    that a sip of water would be absorbed before hitting my colon anyways.  I was asking, really?? does it really hurt if I have a sip of water??

Anyways….. my rear is going to chillax.  I have more friends coming to see me in a bit.  See ya later my amazing support team!  If you are fighting cancer or any hard situation- keep on fighting!!! We can all kick a$$!!

xoxo ~Ashley