Since the whipple...

I was diagnosed with Pan-Can on 11-30-12 then on 12-28-2012 I was waking up in the ICU at Good Sam...after having a VERY long surgery. So yesterday marked ONE year ago...365 days that I had 1/2 my pancreas, part of my small intestine, and part of my stomach removed...to remove the "C". This surgery known as the "Whipple" or officially known as the pancreaticduodenectomy. (yes say that 10 times)  

For those of you that have followed my story, or know me personally...know that I "BARELY" researched anything on the web about this life-changing surgery. I had NO idea what it was literally all about.  I had no idea I would be in the ICU with one nostril having an NG tube up it and the other a feeding tube...for 10 days to be exact.  Wow don't wish that feeling upon anyone and pray  I never have to experience that again.  This definitely was not one of my more favorable memories. 

I remember being so loopy from my surgery and the RN asking/telling me that when the time was right to let her know so she could get me up to walk.  I laughed out loud...literally and said no time is better than NOW.  I remember getting up out of that bed and walking around the nurses station which seemed like the length of a  football field.  The nurses were so amazed that they were seriously cheering me on.  They couldn't believe I had just undergone that surgery and was walking like what was the big deal.-ha!

I had the some of the best nurses possible as I have mentioned in previous posts...they were there to lift me up, control my unbearable pain, help with my nausea, and talk to me when I so badly missed my baby girls.

I finally got the "ok" days after my surgery that I could see my babies in the side waiting room outside of the ICU doors.  It took ALL that I had to walk from my room to see them as they sat there with eyes as big as saucers as they scoped out all the tubes that were hooked up to me.  I could feel my eyes begin to swell up with tears and I would nod to my mom that it was time to take them home.  I  was emotional and couldn't bare to see them watch me cry as I missed them oh so much.  I love face-timing...don't get me wrong.  But there were nights that I would hide under the sheets and my girls were only able to see my eyes...because it was so hard for me to show them what I was faced with.  I would hit the "end" button and just sit in my room for many of the 10 nights and cry...yes I would cry. This tough girl has a soft-side and all these emotions were coming to the surface. 

At that time I still didn't know my "stage" of "C"...I didn't know what treatments I would undergo...or what the next steps in my life would be. 

All I knew at that moment was that Dr. Koep and Dr. Brink had Faith in their specialty and believed in me...they knew that I had "age" on my side...and if at all possible they were going to remove the "C".  I look back now and have often read and re-read the surgery report from this surgery.  They truly put all that they had into "saving" me.  They were VERY optimistic.  I am grateful and still get choked up even as I type this when I think of these 2 guys...Thank you Heavenly Father for these 2...for these doctors that are literal life-savers.

Then once I was able to "eat" they handed me the "Whipple-Diet Menu"...oh boy! Was that appetizing.  Lots of broth, then yogurt, jello, soup, oatmeal, mashed potatoes...yep that's pretty much all I ate for about a month. I thought that I really should put together a post-whipple surgery cook-book. You can only eat the same food over and over until it really becomes gross. 

The picture is about 2 days post-surgery...my scar is so much prettier now :)  Now that it has healed...it looks like an upside down Nike Swoosh...so as they say "Just do it"...that is my constant reminder as I look in the mirror each day.  For this fight...I can and I will do it! 

So I guess you can say honestly that I have really been through a lot...but if it had not been for a successful whipple surgery...I am afraid to think of the outcome.  I will continue to keep on keepin' on. I want others to know that having this surgery if you are a candidate is life changing yes...but it is  eventually tolerable.




Thank you for believing in me Dr. Brink and Dr. Koep...this girl may be still fighting to SURVIVE...but she is ALIVE because of YOU!

If you are ever in my shoes with having to undergo the Whipple...you MUST find a doctor that has performed several of these surgeries and specializes in such a life altering surgery.  PLEASE do your research when it comes to your doctors!!!

Until next time...enjoy the little things in life...and remember the most important are NOT things. 

*Sorry if the picture is too graphic for some...but another crazy side note...I remember being "loopy" that night of surgery and I demanded that my aunts and my mom take pictures of me...it was then that I knew I wanted to document my journey with pictures to go along with my story.  As they say...Pictures are worth a-thousand words.

Continue to pray...tomorrow is round #3 of chemo. I can. I will.

One-Year Blogversary

So ONE year ago today..."missjamiesjourney" was launched.  I didn't have a set goal for myself...other than I knew I wanted to get my story out there and to be able to make a difference.  I wanted to be able to document my journey with "C"...being a mama...and just "life" in general.

So much has happened over this past year...from having my whipple surgery after first being diagnosed...going through radiation and chemo...changing the way I ate-testing what I could and could not tolerate...thinking my "fight" was coming to a victory...then being "re" diagnosed with the PAN-CAN going on a wild field trip to my liver...starting with a new facility that has been amazing...to starting chemo yet again. 

I can sit here and type and think that it seems like yesterday that a certain someone had sat my girls down to say, "You know your Mama probably won't be here for next Christmas"...No we did not know my prognosis...but I thought WOW!...not something I wanted my girls to get in their little minds...from that moment I thought to myself...just YOU watch!   So I couldn't help but to make this weeks phrase be:



We don't have time clocks on ourselves that say on such and such day...you will no longer walk this earth...or at a certain age, life is over.  We don't know what each day brings us...that is why we live life to the fullest...try to make a difference and try to be best possible.  I...like most of you don't live with a crystal ball predicting my future...but I CAN promise you this...I will keep fighting each and everyday until I have conquered "C" once and for all.

Please keep praying as I know this journey would be different if I didn't have the FAITH, my FAMILY and FRIENDS to love and support me and the will to SURVIVE. 

Thank you for being part of my journey and continuing to support me.  Please continue to share my blog with others...I know that when I set out to start this blog...I was crossing my fingers to reach a few hundred people...but when I see that my blog as of today has 70,000 hits...that is exciting. 

I believed I could...I did...and I look forward to MANY more Christmas memories with my girls.

Until next time...Merry Christmas and THANK YOU for standing in my corner as I battle "C". 


In case you missed it:

FIRST POST:
http://missjamiesjourney.blogspot.com/2012/12/where-it-all-began.html

What we want- For Christmas...

While many of you are busy Christmas shopping and checking off the lists of what everyone wants or thinks that they need...I can't sit here but to think of this..

All I want for Christmas is a CURE...a CURE so that no one else would have to go through the "C" diagnosis, the not-knowing stage, the waiting for scans & lab work, the treatments and all the side effects that go along with the treatments, watching our loved-ones ache as their hearts break as we have to go through all that we have to endure.

Tonight is a MUCH better night than last night...this chemo is pretty harsh...but I know it is doing its job.  I only wish the nausea (and vomiting-yesterday) would disappear.  I am able for the most part to tolerate everything...but yesterday afternoon was another story. After some bags of fluid, and anti-nausea meds directly put into my port...I was feeling much better.  Fingers crossed that I won't feel like that anytime soon.

I have been doing ok...but tonight was a reminder as I tucked T into bed...she looked up and said, "Mama you have to go through 2014 with your treatments, huh?!" My heart broke as I simply answered..."Yes, baby...and we are going to get through this!"   If only I could twitch my nose and have round #12 over and done with. 

I keep holding onto that HOPE...that I know I can and I will get through this battle.  But until I see the light at the end of this tunnel...I am allowed to shed a few tears...tonight a few more...as I checked on both my babies as they lay peacefully asleep.  I thank God that he granted me another day to be their Mama and I look forward to the days that I will feel amazing...and that we can close this chapter of our life story and onto the next chapter with many more happy moments. 

Keep the positive thoughts, love, and prayers headed our way.  We appreciate them all!!!

Until then...we will cherish all that we have...which more importantly is each other! All we really want for Christmas is...a CURE!

H.O.P.E.

So over a year ago...Sweet S tried to get me to go to CTCA...I don't like change.  I was content as to where I was going for my treatments and didn't want to ruffle any feathers.  And so life went on...
until one day VERY recently I was going through my closet and all of the sudden this silver- pin fell to the floor right before my eyes.



I thought to myself for a minute that it was a reminder that there is ALWAYS...HOPE.  But I didn't think too much more about it.  Because I was "fine"...until...

I was ordered to have a CT scan by my "previous" med-onco office since my CA19-9 kept increasing.  After several calls to get the results and then the call on a late Friday afternoon stating: "There are areas of concern and something on your liver...but don't worry! We have to get your order CT scan to compare...BUT... Have a good weekend!" 

Go back 4 days prior to the above phone call and I had left from getting my CT scan and Miss R a RN-school classmate had sent me a text inviting me to lunch with her for that day. I showed up wearing a V-neck shirt which she could see my port. Next thing  I know she casually ask me when the last time I had my port accessed.  I kinda chuckled, "Oh you know when I last finished Gemzar about 3 months ago." Let's just say Miss R about chocked on her lunch and about fell out of her chair as she said, "WHAT?!...you need that accessed about every 4 weeks". 

Here is where my life changed...out of her mouth came the words..."WHY DON'T YOU COME TO CTCA?"...I shrugged my shoulders and she was determined to get me to talk to the right person to see how I could become a patient there.

I didn't realize how important this CHANGE (yes sometimes scary) could/would be.

I filled out the necessary paperwork, spoke with the intake RN and the ball got rolling faster and faster.  I was a "new" patient there from the time I met Miss R for lunch it was less than a week later... until I was meeting all my NEW team of doctors and nurses to getting the necessary test ordered.

As I was getting done with my PET scan at CTCA the "previous" office was leaving a message on my phone saying "Everything was Ok!  Any questions that I could give them a call"...at this point I had the biggest knot in my stomach...I kept thinking if I had "stayed" there...what would be the outcome? :(

I knew that I had made the most life-changing decision and that was to go elsewhere and actually determine why my CA19-9 kept increasing and possibly why I had been so tired which I had mentioned to the doctor and the reason was always: "It will take your body time to heal".

I am forever thankful to Miss R and her giving me that push to seek the answers to MY health.  If you can't be an advocate for yourself...have someone do it for you.

I knew I was at the right place NOW...when on the day of being diagnosed with "Met-Pan-Can"...Dr.K's nurse manager called me into her office to get my schedule and as I am walking away she says...
"Jamie...You've got this!"   It was at that moment that through the tears...I realized YES...I can do this...again!

I feel there is always HOPE and being at CTCA has reassured me that there truly is!

I enjoy being treated like a patient...and not just some random lottery drawing number.  I have been given the opportunity to do things that will heal my whole body and not just trying to shove chemo down my port and then onto the next step...instead I am getting my chemo...having acupuncture (for my nausea and neuropathy)...having a weekly massage (yes they do that there too)...having my labs drawn for everything that can affect my well-being (etc.vitamin levels,too)...the list goes on and on. 

I am fortunate that I am able to be a patient there and wish I would have taken the advice of Miss S over a year ago...but like I said change is sometimes a scary thing...but it is a GOOD thing!

Until next time...I am gearing up for round #2 of chemo in just a few short hours...continue to pray as I continue to FIGHT...and certainly will ALWAYS hold onto HOPE!

So what did you do today? I went...

Yes that is me!

 

I have always had a thing for flying...from the moment I said my first few words...I was flying with my Dad in his Cessna.  Landing on the farm fields, flying to California, Colorado and a few Arizona trips...not to count all the local fly overs. 

You can call me crazy...an adrenaline junkie...or just some one that wants to LIVE life! 

Today I did something that was nothing short of amazing.  Thank you to Sean for the flight and for the video.  This day I will NEVER forget.  I am already thinking of my next "off" chemo week...I think I just may be hooked to paragliding.  The scene was beautiful as we all know Arizona sunsets are beautiful.  We got up to 4000 feet...yes it was a bit chilly...but very breathtaking. 

I was and still am in awe of this whole experience. 

So yes today was another day that I was living life to the fullest.

Until next time...what an amazing day...Thanking God for all that He allows me to do!

Peek-A-Boo!

Feels like I have been playing hide-n-seek this past week.  Monday as most of you are aware...I received my first round of chemo in clinic for about 4 hours and then was sent home with the 5 FU for 2 days of continuous chemo via the pump which goes directly into my power port. 



The "in-clinic" chemo is the "O" which has the crazy side effect of the neuropathy and the "not" eating/drinking cold stuff.  I SURVIVED...I lasted the time that was needed to "stay away" from cold stuff and today was the first day in 4 1/2 days that I actually got to eat COLD stuff.  Oh ice...how I have missed you!!!



The 5FU.. yes I have gotten that before which I would carry the pump around with me for 5 weeks straight and every week get a "refill"...this refill was like the size of a cassette tape (you young people can google what this "tape" thing is-ha!)...well like I said this amount would last 1 whole week. Well now I have 250mL of 5FU that last 2 days. Quite a big difference in quantity...which leads me to this...

NAUSEA! NAUSEA! NAUSEA! I was good right after the "O" treatment...but by day 2 the "pre-meds" had/have worn off and the nausea is a bit of a nuisance.  I am coping with it the best possible way with trying to stay hydrated, Zofran and Compazine if need be.  When I am not taking girls here or there, or helping with home work...I have become a BFF with my bed pillows.  Naps, naps, and more naps. 

Yesterday I received my NEULASTA injection...also known to me as PAIN!!!  I have gotten these off and on throughout all my "C" treatments starting back in 2005.  The neulasta does it job with keeping my "white count" up...but boy oh boy I could live without the pain it causes. 

So NO...I haven't been ignoring the calls, texts,  and emails...nor have I been playing hide-n-seek...but I have been getting cat naps when I can.   I  continue to appreciate all your  love, support, and prayers. 

Next week is my "off" week of chemo...so I have a few appointments with my medical team.  Then will have round #2 on December 16th.