L.i.M.B.O

Have you ever been stuck in limbo? Thats where we are at right now.. The most frustrating feeling ever!
I have been waiting for a "phone call" to get a potential surgery date for 4 weeks now.. & before that, even weeks prior. It's just an irritating process, when I am in a ton of pain, trying to make an incredibly hard decision on whether to change this dang pancreatic stent out or not prior to my total pancreatectomy or just ride it out..my doctor doesn't know what to do, I don't know what to do.. Like I said LIMBO! If I change it out, I'll be in the hospital for a week bc of my pancreas.. If I don't I could be putting myself at risk bc of the length of time the stent has been in there for... If I change it out I could/probably Will damage more of my very important islet cells for my transplant... What if I change the stents for nothing bc surgery gets scheduled within 4-6wks after stent exchange... If I wait.. I don't know...lots of decisions to be made for one little organ..hmmp.
These are the thoughts going through my mind daily, hourly sometimes!

 I've started my mandatory weekly Pain Management group therapy sessions & they seem to be going well. I won't get into too much detail about them but my favorite part has been my ability to improve on my meditation or what they call in therapy as "mindfullness/relaxation exercises" I've gotten pretty good at them & at the end of my 6 weeks, I'll get a disk of my psychologist going through them like she does in class & I'll be able to put them on my iPod, which sounds dorky but Will be much helpful post-op (if it ever happens) & I'm in a lot of pain.. I'll be able to escape to that relaxation place & try to forget about the pain I am in & focus on other things within my body, my breathing, my thoughts, etc..
This therapy has also taught a lot about acceptance. Accepting how we are in the present & how we can't change what is going on with our chronic illnesses & to try to focus on the now, not the past(which I don't do.. Doesn't do me any good) but to focus on the here & now. It's very refreshing. Ive completed 4 out of my 6..so 2 more to go.. Hopefully that's all that's standing in my way.

On a lighter side of things, this past month my entire family went to Aruba for a nice family vacation & get away. It was OH so needed & I'd like to go back NOW please! U think this was the perfect timing for the entire family to get away.. We are all so stressed about what's going on right now, even those who don't show it(I know it's there) it was great timing for a getaway! Let me just say Aruba is now One of my favorite places to be. The BEST weather around, it never rains, a breeze every day, beautiful clear water.. I couldn't ask for more! I had my amazing family by my side, my wonderful cousins who are more like my best friends & we had a blast. Can't wait & ready for our next trip! <3

I'd like to ask for some prayers of peace & relaxation throughout these next few weeks.. Pray for my doctors & their guidance to give me the best plan & a solid surgery date(finally), pray for peace within my mind(& my family bc I know this is wearing & tearing on them as well!) as well as relaxation.. I need to relax through all of these tough decisions & waiting around. I know God is watching over me & getting me through all the tough stuff but extra prayers are always welcomed!
I always appreciate the love & support & can't thank you enough!
Much love always.

<3 T

Wishful Thinking...

So a lot has been going in these past few weeks.. A LOT.  I guess you can say that has been a good thing, keeping myself busy.. I've been going to weddings, spending time with family, dealing with some personal issues, painting, & of course going to the doctors (that doesn't ever change I feel like! HA) 

This seems to be the time for weddings.. One of a very close family member got married this past weekend & another close friend is getting married this coming weekend.  A bunch of close friends have gotten engaged recently & I am so ecstatically happy for them as well. This is such a joyous time in their lives & I am so blessed to be able to be apart of that next step & journey of their lives.  

So as everyone has known, this upcoming doctors appointment this past weekend was very anticipated.  It was very up in the air on what was to happen, what was to come of it, what I was to learn of the appointment, what was going to become of the appointment, it was very unknown & very unnerving to be honest... I knew I was going to have to meet with behavioral medicine(essentially the psychologist because of the transplant portion of my surgery this is required for my surgery) & then I knew I was meeting with my PA, but what was to be discussed, I had NO idea.. Whether I was getting my surgery date today, or not I had NO clue.. I was told I would but it was honestly up to them.. what they thought best for me and my plan of action for success.. I came into this appointment with anxiety and extreme nerves because I was waiting for this appointment for 2 months, in a lot of pain, and I am just extremely READY for this next step in my life and ready to start that journey of getting better; not staying in this stream of misery & pain & uncertainty for who knows how long.. this entire process is just very long, exhausting & stressful.  Not that is isn't suppose to be all roses & sunshine because it isn't at all; it's just extremely difficult to get from point A to point B. 

My appointment was not very successful Friday at all.. I was there for about 5 hours, without any success, I felt like.. I am now going to have to do mandatory Pain Management group therapy, which is apparently required for ALL transplant patients, for 6 weeks, prior to surgery.  Now whether I do 2-3 prior to surgery & then finish the rest after surgery is a possibility or I have to do all 6 before surgery is entirely up to the doctors.  They will decide while I am in group sessions & surgery could get scheduled as quickly as within 2 week after therapy has started.  I will be with people similar to me, either other pancreatitis patients or post-op Total Pancreatectomy patients, and I will learn Pain Management coping skills; which will be very helpful post operative, especially if my epidural fails, or my pain is just so incredible that I need extra pain coping skills.  I will start sessions June 24 and hopefully do the 24 & the 1st & see what happens after that. This is a good thing but it just sucks big because it is postponing my surgery an extra 6 weeks maximum when I truly do need it as soon as possible. 

The downfall to having to do this is I will need yet ANOTHER surgery to exchange my stents that are in my pancreas right now keeping my ducts open.  We have held off on that for too long at this point, just because we anticipated surgery to be at the beginning of July.  Surgery could STILL be anytime in July, BUT I can't take that chance of waiting anymore & hurt my ducts or have them perforate with a bad stent in them, because that would be a horrible situation.  I am already in a horrible amount of pain, so the stents need to be changed out.  The bad thing about this is I have been holding out on the surgery because I didn't want my pancreas to be "touched or messed with" if I could hold off before major surgery just because every time we go in & change those stents, it makes my pancreas angry, and when that happens, I lose islet cells, which are those extra important cells I'll need for my transplant!!  I need extra prayers for those special islet cells for my transplant and I just can't have those cells damaged anymore than they have been in the past .... it's just a big deal to me and a scary situation because I don't want to lose anymore of those than what has to be lost so I can get the maximum amount for my surgery & transplant!! The more amount you get for transplant the better changes you have later on for recovery!!!

I know this is a lot of information and more information that you want to know about the pancreas, and I'm sorry... I know everything about the pancreas at this point with my disease!  lol  

in Charleston at the Drs

So at this point, I ask for prayers to get me through a few weeks of group therapy successfully & that I can schedule surgery quickly because I truly am ready.. I am SO ready... I feel like I am hanging on by a thread honestly.  My body is hanging on by a thread .  I know this is needed, it's just a sucky need at this point.. lol Please pray for a smooth transition with this Pain Management & a good learning curve.. I truly want a good result with it... I know it's not what I wanted, but it's what God wanted and I can handle that!  Just keep the prayers coming that surgery happens soon.. that the stent exchange is smooth & doesn't make my pancreas angry or upset & that I get scheduled for surgery pretty quickly & soon.  Once that happens, I'll have much more to update you on.  I'll update with more throughout therapy but until I know for sure when surgery is, it may be a little quiet, just because I don't want to repeat my writings & bother you guys ;) 

Love you guys SO much & I appreciate you're sticking with me through all of this and ALL of your support.  I feel all of your prayers, support, and love.  It means SO much to me and I can't thank you enough..

<3 T

with Baby Mikey at this sweet baptism :)

Hello June!!

Hello June! Oh how I am ready for this month!! It's pretty jam packed with lots of fun, doctors appointments, family and friends & me time as well. 

I'll be heading back down to Charleston the second week of June for my 2nd appt with behavioral medicine (gotta make sure I'm not cray cray you know (; ) and meet with my doctor again for any last minute questions & concerns, meet with anesthesia (which is always my favorite part since I work with anesthesia it's the easiest part to me), & sign consent forms (aka signing my life away). I'm very ready for this appointment, as my pain is increasing becoming harder to manage everyday.. It's a struggle but I'm not giving up my fight.. EVER! I'll be getting my official surgery date then as well, even though I have my TBD date.. My official date will make it SO real... I'm very ready for this. Anxious. Nervous. Excited. Scared. Ready. Not ready. Along with just about every other adjective you can think of in the book, that's me right now. I'm very ready though.. It's almost time & I honestly never thought this day would get here but it has. One reason I never thought it wouldn't be here is because I truly believed I'd be better before this day, but God has much larger plans for me & I can't wait to see what those plans are.. What's in store for me; the ride is going to be one hell of a ride but it'll be sweet & amazing. God is great!! 

June is also an amazing month because it's my birthday month.. WAHOO! I'll be spending part of my birthday month with my family on a vacation to ARUBA!! This trip is OH SO NEEDED & I absolutely cannot wait! I love family vacations. Spending time with my family is such a blessing, making those memories with my loved ones & my favorite little cousins who I adore & are more like my siblings than cousins.. The fun we have when we're all together is epic.

June is going to be amazing! Family vacations, family time, friend time already reserved to go paint(my favorite past time), surgery dates & farewell parties for my pancreas! I'll continue to stay as active as I have been, or my body will let me continue to be until my surgery date.  As my moto has been; I am building the strongest, healthiest body possible to get me through the toughest surgery of my life, so I can ROCK this recovery with flying colors!! I want to go into this surgery the healthiest I can to make it as easy as possible on my body to recovery, as well as to make it easier on me to get back into shape once I get the OK from my physicians to start being active again.  I don't plan on sitting on my butt too long licking my wounds & moping around.  I want to take this recovery by it's tail & show it who's boss from the beginning to the end!! All I need to do now is stay in tip top shape until my surgery date, which is now all up to God & prayers!

Please keep those thankful prayers coming & special prayers for my health in this next month to get me through until my surgery is scheduled!! I don't need any unnecessary surgeries prior to having my TP/AIT! 

I'm so thankful to EVERYONE who have been sending me prayers daily & continue to pray for me. I wouldn't be where I am today without your support and love & I just want you to know that if I don't tell you personally, they are greatly appreciated & felt!
~xo T