4 months and counting, Still an uphill battle.

I have to start off by apologizing. Out of all the things I thought I’d neglect in my recovery a blog wasn’t one of them. All my life, writing has been therapy. I thought at least I’d manage some diary entries that I could transcribe for y’all– but nothing.

This has been harder– and more rewarding– than I ever ever imagined. First the good: The power of prayer has been overwhelmingly evident, as I have said time and time again. Additionally, I have met some of the bravest most genuinely admirable people on earth in the past year I spent learning about this surgery and coming to terms with having it, and have bonded with them in a really deep and unexpected way in sharing this strange process with them.

Generally, my recovery has been easy compared to many. I had few major complications. In fact the worst of my set backs were an endless list of allergies that we had to discover after surgery. Trust me, compared to some others’ tales, that is nothing.

The bad of course, was expected, but still difficult. Worst I think is the loneliness, just being separate from everyone so much. Feeling mentally like you are behind where you are expected to be or where you “should” be. Wondering if you made the wrong decision… If your life will be like this forever… In ways there are days I feel like I’m staring down the barrel of a gun, realizing my life will never be what it was, and it will never be completely normal. Other days I feel so overwhelmingly blessed– so please don’t get me wrong. I think anyone who faces adversity has days that test their spirit to the core of their being, and if they didn’t, how could they truly appreciate how wondrous the blessing of life is?

I do plan on giving you all the gruesome details of my recovery. My wonderful sister who flew in from Colorado for the ordeal kept a detailed log of my first several days and took a number of pictures including the one from my last post (which, in case you wondered, is the day after surgery on my first walk in the ICU).

I will start with what today is like. I started working two weeks ago, I have managed to make it to four shifts. I work 12 hours a week in three shifts. My first week was interrupted by the unpleasant news that my great-grandmother had died. She was 101 and we will all miss her very much, however, she is where she has always wanted to be now, with Jesus. The trip to MI (an 11 hour drive each way in a major snow storm) was a test of my recovery, however I am so thankful that God allowed me to be at a place in my recovery where I could make it — and with no major incident!! And I am much more confident in my progress thanks to the trip.  Five days with no way to get to my doctor or hole up in my bed, and it was all fine.

For the most part I’m okay lately.  I tire easily, and I certainly have some bad days.  Most of my troubles lately seem to stem from weening off of my pain medications and figuring out a balance of enzymes and other digestive medications that are suitable… Yesterday and today I was struck down with incredible pain, the source of which we still don’t know.  I’m hoping it is a reaction to changes in medications and nothing more.  I feel like those progresso soup commercials with the tin cans, I ought to have one of those to the U of M.  I feel like I’m on the phone with them enough where I ought to just not bother pushing end after the conversation! It’s a waste redialing all those numbers each time.

I promise to try to update more, and as soon as I get in the swing of it, to start posting the battle stories.

One Week.

I hoped I’d have something really meaningful or important to share for this post (or at least a really hilarious Bad Pancreas Cartoon), but unfortunately, while I’m feeling largely unaffected by the upcoming surgery, my creative juices do not seem to be flowing.

Instead I’m left with a a=b mind set. Very task and goal oriented and in a mood to just get ‘er done. I think I have everything done! Miraculously, I’m not feeling stressed or anxious, I feel calm and collected and ready. I expected a lot of things a week before surgery, but not this!!

This week I went through with some legal preparations for surgery. I have had some problems at the U of M before, so, I have had my reservations about going back. And while I have met my care team and I couldn’t imagine being in better hands, the realist (pessimist?) in me is screaming to prepare for the worst.

So, just in case, I have had a health care directive and medical power of attorney prepared. I thought I would mention this because if you are nervous, like I am, about what could happen, this will hopefully help set your mind at ease.

***DISCLAIMER: What follows is information by a lay-person on preparing a legal document, I am in no way shape or form qualified to give legal advice, nor should this be considered legal advice.  PLEASE talk to your attorney if you have any questions at all regarding legal documents, when you need them or how they work.***

You can find the Minnesota version of the form here.  Essentially, a health care directives are instructions to your doctor and/or your representative on what is important to you regarding your health care should you be unable to speak for yourself or act on your own behalf.  If you are capable of speaking for yourself (fully conscious and of ‘sound mind’) then whatever you say trumps the health care directive, but if for some reason something were to happen (say during a surgery) to make the doctors believe that you are not capable of making informed decisions, this form guaranties that your doctor will (legally) have to follow your wishes.  If you do not plan to appoint an agent, a copy of this should be given to your doctor to be put in your medical record, and a copy should be kept somewhere safe.

The second part of this form is a Healthcare Power of Attorney, what that means is that you can choose an agent to be responsible for your health care decisions if you are unable to make them yourself.  You can set it up so that the Directive trumps their orders, or vice versa.  This differs from a typical power of attorney because the person who becomes your agent does not have access or power over any other areas of your life (such as finances or property) only health care decisions.

I can’t tell you how much knowing all of this and having this document on hand has put my mind at ease.  If you struggle with a chronic illness chances are you have dealt with some awful doctors, and you may have a fear of what would happen if you were unable to act on your own behalf, if so, I highly recommend you talk to an attorney about having these documents drawn up.

Just Breathe.

To say I’m a basket case might be sugar coating it.  I’m a gigantic bundle of nerves lately.  Monday an account in Alas, Babylon – a post-apocalyptic novel written in the 1950s about an atomic bomb attack by the Russians – triggered my hand a-reachin’ for the telephone to call the hospital and cancel the whole thing.

On the ninth day after The Day, Lavinia McGovern died.  This, too, had been inevitable ever since the lights went out and refrigeration ceased.  Since Lavinia McGovern suffered from diabetes, insulin had kept her alive.  Without refrigeration, insulin depleted rapidly.  Not only Lavinia, but all diabetics in Fort Repose, dependent upon insulin, died at about the same period as the drug lost its potency.

Alas, Babylon , Pat Frank,  page 165.  It goes on to describe the situation in a larger town’s hospital, and the gruesome terrifying death of a diabetic without insulin.

So WHY would a person willfully put themselves in this situation?? A situation where their life is dependent on the presence of a man made chemical? Why would someone decided to put their life in danger if there were ever… ever… ever what? Ever an apocalypse?

So then it dawns on me that despite what my amazon wish list might indicate, I am not actually a dooms-day conspiracy theorist.  I do not ACTUALLY spend every waking hour (or any of them usually) in fear of the end of days, or atomic war, or the end of the world.  So why was this silly little excerpt giving me such grief??

Now, Post-Apocalyptic being my favorite genre I cannot tell you how many of these books I have read, never once reading anything quite like this before.  I could have read a thousand more and been happy not to come across this passage.  Of course, the timing had to be impeccable as well, just before my surgery, eh? Yeah.  Of course.

Point is, it didn’t really matter what it said, one itty bitty little interjection of doubt and my mind is reeling.  The potential bad-side of this surgery, possible complications and incredible ominous warning of immense pain I’ll be in afterwards is not lost on me, believe me!

Finally, this week, I managed to put a lid on the constant back and forth babble of doubting thoughts that have been ambushing my brain for the past several months.  While the fears and doubts are still there, they are manageable now, they are quieter, and I have positive and logical retorts.  How did I do it? More on that next time…

Panc-ation: A No-Pancreas-Worry Vacation

I have to admit I was all nerves for this vacation.  We began planning it when I went to my first Dr. Appt. at the U of M in March.  I suppose that March is actually a ways off now, but it doesn’t feel like it.

Our Hotel Room at the Royal Solaris in Cancun

My wonderful, amazing husband found this AMAZING deal on an all-inclusive resort in Cancun, and his long unrealized dream of having a “tropical vacation” together seemed to fall into his lap.  He insisted, and being the dilligent planners we are we even bought travel insurance, just in case.  Well, time went on, and I got sicker, the two weeks leading up to this vacation I spent much of the time in bed, dreading the trip.  What am I going to do on an airplane when I’m sick? What am I going to do if they don’t have any food for me? How is he going to feel when I’m not able to do anything other than sit in a chair somewhere.

Who wouldn't prefer lying in a lawn chair looking at that over lying in bed at home??

There were days that were hard, at least as hard as I imagined, if not harder.  I laid in bed in the room for almost an entire day.  I spent most of the time in a lawn chair by the pool or beach only dipping into the water on one day, actually.  But I got to spend a lot of time relaxing with my husband, and talking about things that had nothing to do with piling medical bills, being sick, or the impending surgery.  That was amazing.  The best blessing I could have asked for.

Me on the "Adult Deck" at the Royal Solaris Cancun.

We have our vacation faces on!

Since everything was all inclusive and paid for months and months ago, there really wasn’t much to worry about, laying in bed there was more comfortable than laying in bed here (and I had someone to clean for me there!).  I brought plenty of medicine, and ate almost entirely melon for five straight days, but it was definitely worth it, and necessary.  I missed my man.  Sometimes we get so caught up in everything that has been happening that we neglect our relationships.  It was nice to see a glimmer of what we used to be together, and what we will be again when all of this is over.

My Beef With Hollywood Today

My husband and I spend a lot of time watching T.V. and Movies, it’s one of the few normalcies of my pre-bad pancreas life that I’m allowed to indulge in still.  Plus, it helps that my heating pad and healthy fat free snacks are invited along, and no one ever blames me for falling asleep on my couch mid movie marathon.  Here is the thing that has been getting my goat a bit lately:  Romanticism about Illness in the media.

I’m sure it couldn’t just be me.  My illness is not pretty.  It is not romantic.  In fact, it greatly prohibits romantic moments.

I can’t be there for my husband the way I want to.  I can’t let him whisk me away from my problems to a romantic weekend retreat (although, bless his heart he has tried).  It is not cute when I can’t keep down a sip of water.  It isn’t sweet when I’m gasping for breath because the pain has taken mine away.  I’m not pleasant when these things happen.  My wonderful, loving husband tries to impart his comfort, grabbing my hand holding my head, petting my hair, and sometimes I just can’t be touched.  You are not the center of attention when you are chronically ill, it is more like you fade into the background.  Everyone’s life keeps going on, because, well, what choice do they have? But yours feels stuck.  Right where you left off.

I never cared much for the movie “A Walk To Remember” but I can’t imagine if my husband proposed to me right now what I would say or do.  I would like to think “Love conquers all” but KNOWING what I would be subjecting him to, what he would be walking into, could I do that?

 

 

CafePress

There has been a great response to the pancreas cartoons I made for this blog! Such a great response that I decided to try something a little different.  I put them on T-shirts and I’m selling them to help raise money to cover part of my expenses.

CafePress is a really neat (100% legit) site that lets you design your own products to sell.  The seller earns commission on every sale made.  All of the commission made on any of the merchandise with my ‘bad pancreas’ cartoons on them will go straight to medical expenses.

So I was extremely thrilled when I saw one of my designs pop up on the CafePress ad this morning!

That’s right it’s the first one of those T-shirts there! And in case you can’t read the substance of the banner, you get 20% off your purchase of $50 or more with the code TA0701! Which is awesome!  GO HERE to see the full selection!

Soul Food: Keeping the Fuel Tank Full.

No test or temptation that comes your way is beyond the course of what others have had to face. All you need to remember is that God will never let you down; he’ll never let you be pushed past your limit; he’ll always be there to help you come through it. 1 Cor 10:13

I love this, this is the verse people traditionally refer to when they say that God won’t give you more than you can handle.  That is what is so amazing.  He doesn’t allow us to be mowed down by our troubles.  He uses them to make us stronger by helping us through them.  No matter what happens, and what complications I face with the surgery or my recovery, I can know with complete certainty that the Lord will help me through.

I pray that God, the source of hope, will fill you completely with joy and peace because you trust in Him. Then you will overflow with confident hope through the power of the Holy Spirit. Romans 15:13

I have to admit that I struggle with finding peace and on my worst days hope.  This illness saps me of  energy, strength, and of course control.  When you feel like you are out of control of your body and your life it is hard to imagine things will get better.  It is impossible to believe that you can make them better.  Of course, anxiety, nerves, fear, all that comes with the territory of a major surgery.  I repeat this verse in my head like it is my mantra.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.  Phillipians 4:6 -7

This is powerful. Do NOT be anxious about ANYTHING.  But, wait– what if? No, not about anything.  Wow.  And then it tells you how to accomplish this.  Our God isn’t full of big demands that we can’t live up to, he tells us what we ought to be doing, and how He can help us achieve these things.  That’s awesome.

So have no fear of them, for nothing is covered that will not be revealed, or hidden that will not be known.  What I tell you in the dark, say in the light, and what is whispered proclaim on the housetops.  Do not fear those who kill the body but cannot kill the soul. . .  Matthew 10:26-28

I love this reminder that God is the author of our stories.  Nothing can happen to redirect his plot for our lives.  I love the part “What I tell you in the dark, say in the light.”  I’m terrified most of the time.  I’m scared I am making the wrong decision with this surgery, that something will go wrong, or that we will not be able to handle the financial burden of the medical costs that are going to follow.  This verse not only gives me peace, but it fills me with hopefulness, about what His plan in my life is and how all of this fits into it.  He is molding me to be the person that He can use.

Blessed be the name of God forever and ever, for wisdom and might are His.  And He changes the seasons, He removes Kings and raises up Kings, He gives wisdom to the wise and knowing to those who have understanding.  Daniel 2:20-21

Just another reminder that God is in control of EVERYTHING.  (Remember, do not be anxious…)

What verses feed your soul and fill you up when you are frightened or anxious? I would love to hear them.

Call to Arms

So we’re at war in our household with one Bad Pancreas. Admittedly, my weak point is asking for help, but I have to confide that I can’t take on the little guy on my own.   As the months leading to my surgery turn to weeks (and days, and so forth) I’m going to need a lot of support.  So, I’m asking:

1.  For Prayer.  We desperately need prayer, in every single aspect of our lives.
• We need prayer on September 12, on the day of surgery,  for guidance for the doctors.
•  We need prayer after September 12, for healing.
• We need prayer leading up to and following the surgery for our financial well-being.
•  We need prayer for our fundraiser, we know God will provide for us to have this operation, but any security we can muster will exponentially help our certainty that we are doing the right thing and allow us to have peace about our decisions.
• Prayer for our family and friends, this is going to be a hard time for everyone involved.  We’ve been told by the doctors over and over again that it is almost a community affair, this surgery affects everyone, it is going to be a hard, long surgery, with a hard, long recovery.
2. For Financial Help. This is by far the hardest thing to ask for.  I know with the economic climate the way it is, many of you can’t afford to help.  Please know that I understand, and I’m not asking you for money.  I appreciate anything you might be able to contribute, whether it is a one time prayer, or help spreading the word to those who may feel led to give.
• Social Media.  One of the best tools we have for raising money is Facebook and e-mail.  In order to raise any money at all we have to be exposed to potential donors.  To do this, we need all the help we can get, from sharing events, status updates, and pages, to initiating your friends to donate their status message for the day with our fundraising link (
  http://www.giveforward.org/evicttaraspancreas
  ). If you have a blog, please feel free to share the links to this site and the one above, as well as my story and any images.  We have a limited amount of time to make as big of an impact as we can with this campaign and I’m being really up front here because we simply can’t do it without your help.
• Mail.  If you have access to a list of addresses through your church, business or organization who you think might be inclined to help out our cause, we would love to send them a letter explaining how they could help if they were so led, including the time and place of our eventual event.
• Fundraising Event. I’m completely at a loss here, if anyone has any experience with these things, I would so appreciate your advice.  I’m sure we’re going to need a location, food, advertisement, possibly people to help run it, and I have no clue what else. I’m open to ANY advice!!
• Donations or  Merchandise Purchase. If you are interested in contributing financially you can do so here at our charity website OR you can purchase Bad Pancreas Cartoon Merchandise at the Shop.  We get a 30% commission on merchandise sales, and 100% of anything donated to the charity site.  If you have any advice or ideas on how to make this drive more successful, please, please contact us!
3. For Support After the Surgery.
• Watering the Plants and Feeding the Cat during the Surgery Week. I know my darling husband will do his best to take care of my patio garden and our giant fat cat, however, I’m sure it will be far more overwhelming for him than he or I realize.  To this point, if anyone would be willing to stop by once a day for the one or two weeks I will be staying in the hospital during and after the surgery, I’m sure it would be an incredible relief.
• Spending time at the house.  I know this one is tricky.  My doctor asked us if we could find someone to stick around while my husband is at work, and essentially babysit me my first few weeks home.  If you have any spare time you’d be willing to spend hanging out at my humble abode post surgery, we’d be so thankful.  We would be more than happy to provide food and sleeping arrangements. If you can stay more than a day, let us know and we will start looking for some simple furniture to make our spare bedroom inhabitable!
• Running Errands.  I won’t be able to drive for the first few months, and I’m sure Rob is going to have his plate full taking care of me and working his insane schedule.  Which might leave a few neglected tasks that need to be tended to.  We may need someone to run and grab something from the pharmacy or help me get to a dr. appt.  every now and again.
• Silly Domestic Stuff.  Like possibly providing a couple meals for Rob and whoever is able to stick around and help out that week.  I won’t be able to stand to cook for myself or anyone else, at first I will be on feeding tubes, so this won’t be a huge deal for me.  But, it might be nice for other people to be taken care of.  If you would be able to do this during the first month or two post-surgery, that would be amazing.

I know this is a lot.  Truth be told, we can’t do any of this but by a miracle of God.  Anything you are able to contribute, even just thoughts or prayers will be more than sufficient.  We love you all so much.  We feel your support all the time, and we are seeing God answer your and our prayers each day.  I couldn’t have made it this far without you, and I know you’ll be with me through this whole super, major, life-changing experience.  I can’t wait to share it with you all.

Bad to the Bone.

For any of you have hadn’t heard, last week was a crazy week.  So overwhelming, that I have been attempting to write and re-write this post for most of the weekend and the week so far. Yeah, that bad.

Part of me wants to sugar-coat it, another part of me realizes that if this blog is going to help anyone going through this situation or understanding someone going through this situation, sugar-coating must be strictly avoided.  So, I’m going to attempt to share what’s been going on briefly and to the point and with as little complaining as possible.

My Pancreas is Bad to the Bone.

Starting Friday my symptoms (nausea, vomiting, dizziness, stabbing stomach pains,  weakness, dull back pains) began escalating, and continued escalating.  My husband planned a lovely overnight trip to Duluth, which was foiled by my Bad Pancreas.  After the three hour drive there, I managed a measly two hour stay, an hour of which was spent attempting to recuperate from our short, slow boardwalk stroll in a dark dingy Grandma’s dining room.  A travesty considering the incredibly gorgeous spring day hanging over the lake.  The next day, back in our south suburb, much the same, a walk around the mall had me monitoring each wall for the nearest garbage can for the inevitable purge of what little I had been able to eat that day.  All of the preceding culminating on Monday night, after a stint of nearly 24 hours unable to retain any kind of fluid (i.e. I was EXTREMELY sick).  Eventually, it was determined that I needed to visit our friendly local Emergency Room to reinstate some friendly H2o into my system, as well as manage the pain that had likely caused my neighbors to consider calling the cops to control the noise. (Poor neighbors.)

The emergency room was unusually pleasant.  The doctor was kind, and after advising me to check in, willingly allowed me to attempt to go home once my pain was managed and I was able to keep down a few sips of water.  Six hours later we were back at home, poor Rob was attempting to get ready for work, and stubborn me hadn’t yet admitted that this trip to the ER meant I would need to miss work myself.  By 3 p.m. my prescriptions from the ER had been filled, I popped the Zofran (anti-nausea) since I was having a flash-back to the troubles of the previous days and subsequently some percocet.  By 6 p.m. there was a sharp pain in my throat, by 1 a.m. I awoke with the sensation of suffocating, my throat and nose swollen so much I could barely swallow the benadryl I assumed were necessary (since, I was guessing this was an allergic reaction).

Within 15 minutes or so, the swelling had desisted enough for me to return to sleep (surely, also aided by the benadryl).  Tuesday I began to show signs of fever, sure enough 102 F.  Fantastic.  Now the past 7 days I’ve spent in bed with what appears to be a flu I picked up in my friendly neighborhood Emergency Room all because of my Bad Pancreas.

Admittedly, I did not expect to be nearly comatose for over a week because of a wee little flu bug.  But along with it came a slew of insecurities all its own.  Of course I wasn’t nearly as laid up as I will be after surgery, and this was hard enough! However will I cope? I mean, this was a haze I was previously unaware I was capable of having, bills did not get paid, dishes did not get washed, father’s day cards did not get mailed. Whew!  Next, If I was this taken out by a simple flu and some pancreas pain, what is it going to be like when I get my guts ripped out for surgery? Am I prepared for that kind of physical torment? Can I  prepare myself? I haven’t even prepared my house or my body.. what am I going to do to prepare mentally?

Thus, begins a state of Tara emergency, and the creation of the Tara Emergency Preparedness Plan (yeah, I know, that makes little to no sense, let’s just call it the remnant fever babble and move on to my explanation…) I have a list. A three page-er of To-Dos broken up into pre-surgery stages.  Let’s just say, this bad boy is not just a little overwhelming, but I am feeling like I have my head on straight now at least…  Like I might possibly be able to manage doing this… One baby step at a time.

So, What’s With All The Purple?

So, what’s with all the purple?

Purple for Pancreas, hip hip hooray!

I wondered the same thing a while back. It seems like it was yesterday that I felt like I was going through this whole thing entirely alone. It was scary and horrible. I didn’t know where to turn– or even that there was a place to turn for support and information. Numerous Google searches turned up with old standards and stereotypes:

• Most patients with Chronic Pancreatitis are men over the age of 50.
• Most patients with Chronic Panceratitis are life-long alcohol abusers.
• Most patients with Chronic Pancreatitis will die shortly after diagnosis.
• There is nothing that can be done to help people with Chronic Pancreatitis.
• A person cannot live without their pancreas.

So what do you do when all of these stereotypes are utterly unfitting for your situation. I am alive ten years after my diagnosis, I’m a 24 year old woman (15 when I was diagnosed, 13 when the symptoms began), I did not drink when I first had my symptoms and don’t drink now, I am not willing to admit that my pancreas can or could defeat me. If you know me, you know admitting defeat is just not my jive. And suffice it to say, the last one will not be getting in my way either, thanks to the kindly folks at the University of Minnesota Pancreas and Liver clinic.

I’ve found that many people struggling with this disease, whether they fit all or none of the stereotypes, have one thing in common (well, besides a bad pancreas). They went through a time when they felt very, very alone. So, enter purple….

Purple is like us. There are many stereotypes, good, bad and just plain wrong that purple fits into. Gay pride, Girly, Royal, Cancer, Pancreas, Cystic Fibrosis, and so on and so on. But, for us, it unites us, with a commonality. We use purple to represent our fight, and to remind ourselves that there are others like us. What a perfect color to use. Stigma and power, fighting, winning, ruling, purple has done it all.