Okay, I *THINK* that this is the end of the Monster Pancreas run. :) The grand finale if you will.
I just couldn’t resist the pun. I know I am almost certainly not funny to you. But I find myself HILARIOUS.
Okay, I *THINK* that this is the end of the Monster Pancreas run. :) The grand finale if you will.
I just couldn’t resist the pun. I know I am almost certainly not funny to you. But I find myself HILARIOUS.
Maybe people suffering with necrotic pancreatitis will get a kick out of this one, they are probably the people with the closest thing to an undead/zombie pancreas, but what can I say? I couldn’t resist.
Plus, the last pancreas cartoon got me on a kick of Horror Pancreases. Having a bad pancreas can be pretty horrific afterall.
PLUS it can feel like (with all the stress/pain) your pancreas is literally eating your brains.
I’ve been waiting to draw that one for a while. One of the things I was very afraid of before surgery, that the surgeon informed me is a real problem was phantom pains. You still feel the chronic pancreatitis, even though there is no source of the pain.
I can report confidently that this was not that case for me.
I’m so hopeful, and things are improving so much. I have some big news to announce this lovely Friday: I have registered for a couple of classes this fall!! That is right, going back to school! I’m elated. Time to take my life off pause and start working towards the life I always hoped I’d have.
Loving this quote currently:
“Dream lofty dreams, and as you dream, so shall you become. Your vision is the promise of what you shall one day be; your ideal is the prophecy of what you shall at last unveil.” – James Allen
I hope you all have a wonderful weekend!
Chuck Norris Pancreas.
I was looking for the perfect joke, the one comparing Chuck Norris to an angry pancreas, but alas, I was sorely disappointed to find there were none. SO, I open the floor to you, friends. Can you come up with a Chuck Norris Fact that suits our bad pancreases?
I’m now at Month 8 post surgery. Unfortunately for the past four months or so I have been dealing with something a bit unexpected.
It is called a cholangitis. Essentially, they realized when they got inside of my stomach that my duct from my liver was especially narrow. To be precise “the narrowest” my doctor had ever seen. (Joy!) Which, at the time, he thought might just resolve itself, but is anything ever really that easy when it comes to me? No. You’d have thought the 50+ medications I turned out to be allergic to would have proved that.
So, it started with a rash we thought was from a laundry detergent. Then sporadic unsorceable stabbing pains under my rib cage on the right side. Pains that would not subsist save for lying flat on my back for days at a time. Pains that knocked me off my feet and left me crying on the floor. Pains no one could explain. Then almost a month later, 104 degree fever landed me in the emergency room, and then the hospital for 3 days. No one had any answers.
Until I saw my doctor two weeks later. Cholangitis (a liver infection) he said. Of course he said. In the hospital? He said. If I were in town I would have sent you home on antibiotics. No hospitalization necessary he said.
So, I’ve had two flare ups, one month apart, and they are treated with heavy rounds of antibiotics. Then my doctor put me on actigal, a drug which should thin the liver secretions enough to make it through the narrow scarred up little duct, and so far it has been a glorious three months since the last flare up.
In all fairness I was told I was trading one set of problems for another. And I was/am fine with that. Anything to have my life back.
I have been a terrible, terrible blogger. This started out as a noble pursuit. I learned so much from so many amazing blogger’s (please visit the links section to see some of my favorites). In fact, I’d go as far as to say the only reason I found the courage to go through with this surgery is the hopeful, healing words of some of these people. Reading about their struggles and their triumphs helped me to know that it could be done, that it could be successful, that I could be well again. And I am. I am well. For the first time in my life.
I have had a few struggles during my first six months living sans pancreas. To begin with, I spent a lot longer on feeding tubes than most. Many people will never leave the hospital on a feeding tube. I chose my doctor based on his post-operative care regimen. All his patients leave the hospital with feeding tubes in tow and until they are able to eat a substantial amount of food, they stay attached. The complication that occurred with me was one the doctors had never heard of, apparently I have an allergy to the tube feed formula. So, whenever my tubes were on, I felt miserably sick. And when we turned them off to attempt taking in some liquids, I would wind up curled up over the toilet (I know, ick.). This prompted the doctors to think my digestive system had just not fully “awakened” after surgery and that gastroparesis was causing the food to sit in my stomach and when it had no where to go, come back up. For months we experimented on food, off food, on liquids, off liquids. Always with the same results. My symptoms made them think I picked up a nasty infection in the hospital called C.Diff, I was tested a dozen times, each time it was negative. During a trip to the emergency room, after a morning fit of vomiting caused my feeding tube to pop out, my doctor saw me uncontrollably heaving, I hadn’t had a drink or bite in months. He told me that they had no choice but to admit me, and he did not reconnect my feeding tubes. In the coming hours, I felt better than I had during my entire recovery. All of the sickness stopped. When he came to turn the tube back on, I was prepared to march out of the hospital if he wouldn’t let me keep it off. Of course, this wasn’t necessary, he was incredibly understanding and told me we would try an “experiment” and I could order some liquids. I kept everything down!!
I can’t tell you what this was like, FOOD! Even now, every single bite is like a little miracle. I know people around me are sick of hearing it, all the wonderful tastes and textures. Vegetables especially… and NO pain!!! No terrible gut wrenching pancreas pain, no worrying about where the nearest garbage can is in case I have to make a run for it… Life is so great!
The next big change in my life has been walking. I walk and I walk and I walk. Ever since the day I woke up from surgery, when I made it a measly 150 feet with a walker, I haven’t been able to stop. I regularly walk 3-4 miles each day and my walker sits by the front door reminding me of what an accomplishment that is.
That brings me back to my neglecting this blog. It is such a blessing to be well, that despite my very best intentions all of this has gone by the wayside. I’m so happy to be healthy that I don’t want to think of what it was like before, and all the pain and suffering that others are still going through. I know this sounds awful, but I just feel like my life has been paused for the past decade. Everything has been hinging… waiting on… this moment, my present, and all I want is to charge full speed ahead without ever looking back.
I can’t stop dreaming about what I want my future to look like, the kind of person I want to be, the things I want to do, the career, education, adventures I want to have. It is all attainable now. Everything I ever imagined, right there at my finger tips.
It is amazing in the past four months how many blog post drafts piled up in my files with this heading. I think it is hard – after the fact—to put these kinds of events into words. To do them justice without being melodramatic, without coming off as whiny or egocentric. I know my experience wasn’t earth-shattering, I know millions of people are sick every day and deal with this or far worse. Yet finding words to describe how huge this event was in my world, is an incredibly daunting process.
Coming home from the hospital was something I was dying to do, I didn’t realize it would be as difficult as it was. In the hospital I was pushed. Pushed to walk further, try harder, and go faster. I knew I would push myself at home, but that I wouldn’t have to conform to their expectations, feeling like a failure when I just could not do it.
In the hospital you have physical therapy, occupational therapy and lessons by a nutritionist and diabetes educator. They teach you how to do everything from get out of bed to walk to administering medications. Each one sends you home with a booklet of instructions, and it is clear most of them have never spoken to anyone from the other departments…
The diabetes educator told me I was “carb-phobic” the nutritionist said I may never be able to use my juicer again (thus adding to my phobia), occupational therapy said I could lay in bed and do these exercises on days I was too sick to move, physical therapy said there was no excuse not to get up and walk around no matter how sick you are.
Nevertheless, I left the hospital with a satchel full of prescriptions and two boxes full of medical supplies. Never be afraid to ask for things when you are leaving the hospital. That insulin that they had been administering that I would have to pay for? If I hadn’t asked they would have just tossed it.
The day I left was the first day I was brave enough to look at my tummy scars. It wasn’t as bad as I thought. I was afraid that seeing those cuts and the tubes coming out of me would repulse me to the point where I would give up. A flimsy fear that was as unlikely as it sounds, but a fear nonetheless.
As I was leaving the nurses urged me to check my blood sugar repetitively, keep an apple juice on me in case it plummeted. The idea of being a diabetic, of checking my blood sugar was still new and scary. The apple juice felt like a cruel trick, Dr. Beilman told me it would be at least another two weeks before I could have a sip of what I had been craving since the moment I woke up.
The car ride was miserable. I squeezed my monkey pillow pet to my stomach as tightly as I could and hung my head over a bag the majority of the trip. It is only a half hour, i don’t know how the people who fly to the hospital from out of state possibly manage.
When I got home, I put a sheet over the couch and claimed it as my bed. My parents brought with them a cot that would sit in the living room for the next 8 weeks, where my husband would sleep most nights. Within 20 minutes of arriving home two large boxes were wheeled up to our stoop. Boxes of tube feeding supplies and bandages for my wounds. An hour later a nurse arrived. She helped my mom mix the formula and hook me up to my tube feeds went through checking my blood sugar and helped us come up with a schedule for my medications ( of which there were so, so many). Every four hours we would have to change the food, at which times I was supposed to check my blood sugar. Every 3-6 hours we would have to administer different medications, various vitamins and so forth. Each day I was expected to go for a walk, my doctor told me I was expected to walk a mile a day. For this feat we invested in a walker, which regretfully I never used once.
That night, my mom went home, my parents leaving and the absence of the sounds from the hospital made everything feel still and lonely. My husband fell asleep on the cot almost immediately. I sat up most of the night thinking about how far I had come and how much farther I would have to go before all of this would be over.
A lot of the questions I had before surgery were about what day to day life after surgery is. Now, of course, I am by no means an expert as I am only four months out, but I can tell you where I am at now.
One of my biggest frustrations is my diet. I feel silly admitting that because I know people who were able to eat far less for far longer. I had high hopes pre-surgery. I viewed this as a chance to re-think everything, including my poor eating habits. It is evidently en vogue to “cleanse” oneself before significantly improving one’s lifestyle. What better cleanse could their be than having not a bite of food for three months? My plan was to begin with juices and soups all fruit and vegetable based, and move on to purees of vegetables.
It was a nice thought….
Truth be told, my body can barely tolerate most food. I CAN eat anything. But, I feel best eating things that are not high on the healthy list… particularly starches, crackers, chips, instant mashed potatoes… and not much else. I press it of course, because I know that this won’t be doing my body any favors, even if the “instant gratification” of seemingly easy digestion is there. Raw fruit and vegetables? Forget it, I’ll be hunched over the toilet for hours.
My wonderful mother made five different delicious home made soups from scratch for me after I had my feeding tubes out, the week before thanksgiving. Those were probably the most sustaining foods I have had this whole time. That’s right. My mom is probably the only reason I have any hair left at all (another grisly detail I’m sure most of you didn’t want to know — but if you are preparing for surgery, be warned). Since then my diet has been spiralling. I eat a lot of canned soup. There are some lean cuisine meals I can handle. But it is touch and go. I try to drink one Boost shake a day. And I try to have either a smoothie or some eggs each day if I can bear it.
I’m still planning to revamp my eating, part of that will have to wait for me to be well enough to grocery shop and cook regularly again. I’m sure a nutritionist would be horrified by my current eating habits, but I’m pleased just to be able to taste food in general and I’ll take it as I can. But I do miss salads… so very much!
Exercise is the next thing that I wish I could stand. My sides ache when I am in a chair without arms to support me, my legs grow weak when I’m standing for more than 20-30 minutes. Of course my attitude on this topic was similar to the diet topic… but I severely underestimated how weak I was going to be, how hard it would be to stand the cold outside for a walk when shivering racked my healing muscles, how frightened I would be to attempt to work out when no one was around to help me if I collapsed. At a little under three months I was walking in a craft store when I fell into the shelves, it is a huge blow to realize– to admit to yourself– that you are that frail. Mentally of course this makes me more determined… physically, I’m afraid I’m not ready.
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.
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.
Alright, better late than never, right?
This week is hectic. Of course, you’d have guessed that right? Being less than two weeks out from surgery? Congratulations, you are smarter than I. I somehow convinced myself that I would be SO prepared, it would be a cakewalk this week, of course, maybe that was just strategic delusion so that I wouldn’t lose my mind entirely (since a week ago I couldn’t very well fathom things getting worse on the hectic scale!).
So, as I said before, I decided I would do anything and everything possible to prepare my body for surgery, mentally, physically, you name it. There isn’t a lot of information around on how other people having other major surgeries cope or prepare, let alone people having the TP-AIT. So, this is my directory of resources along with a brief review of each thing:
1. Preparing for your Surgery (web resource)
The best part about this is definitely that it is free. Also the information is good without being preachy or over bearing. Especially for someone like me who is new to a lot of new age ideas like meditation and what not. What I especially like about this link is the information it gives you on diet. I could not find any information about what the ideal pre-surgical diet would look like at all on the web or in any books. I thought the information they gave was pretty well explained: In essence, for as long as you can amp up the fruits and veg so that you are getting a good vitamin intake. Then for the last week or two before surgery eat as much protein as you can. Protein being what makes your muscles heal (as any athlete knows). It also links you to a place where you can enter your information and get recommendations for supplements to take.
Most of the supplements I’m on I’ve been on because my darling sister, researched and chose for me, my surgeon, impressed said he couldn’t have done better himself!
Ginger & Garlic, Vitamin B -Complex, Iron- Complex, Antioxidant Complex, EmergenC, Multivitamin, Calcium w/ D, Evening Primrose Oil, and I just added Milk Thistle, which works to help make your liver healthy.
I don’t do the best job taking these, especially because they often make my nausea much worse, but I do my best. I know that it is important for my body to have the nutrition it needs to keep itself running so it can heal quickly and efficiently. To help with this, my husband recently bought me a juicer. The juicer should constitute a resource all on its own, one thing to note, when you are juicing fruits and veggies, you are not getting the full impact of all their healthful benefits because the juicer removes the fiber from them. HOWEVER, for those of us with digestive issues, removing the fiber means that the vitamins can be directly absorbed into the system, foregoing digestion, including enzymes. I still makes sure I am eating as many servings of fruit and veggies as possible, but I also add extras via juicing to make sure I’m getting enough vitamins to power through my recovery.
We have talked about this one a couple of times before, but I don’t think that the impact it has had can be overdone. I had a lot of reservations about trying this before I jumped in. For one, there are a quite a few available on the market, the efficacy of which I cannot attest to, I was really stuck between this one and this one by Belleruth Napersak. I watched dozens of youtube videos by both of Napersak and Rossman to try to decide everything from whose philosophy I trusted or agreed with more, to whose voice was more appealing. I’m not joking this decision took months of obsessing.
Finally, I decided on this one, not because of some great conclusion regarding any of the above factors, but because it was available on Amazon (a vendor I trust) for $8 (how could I lose?) instantly (hello, mp3 download, how have you eluded me for so long?) there was no downside. I don’t like it, I just order the other one and I’m only out ten minutes and $8. No biggie.
So, now, what to expect from this cd: for one, I think Rossman does a remarkable job of not making this cd religious in any sense. Only once (at least on the preparing for surgery track) does he mention anything about a higher power, and he pretty much says that “if you believe in a higher power.” I am a Christian and I have no qualms with sharing that, however, meditation is largely Eastern, and I would not want to be broken out of meditation with images of the Green Goddess (also named Tara) anymore than I’m sure a bhuddist would want to be faced with images from my religion. Time and a place– hence addressing it in this review.
My favorite part about this cd, which I feel that (from what I read and heard) Napersak’s may have been lacking a little, was the degree of self-exploration. You pick a place, you imagine what is there, it is your place, and it teaches you to have the ability to go back there whether or not you listen to the CD. Busy, hard work day? Wishing you were somewhere serene, peaceful and a million miles away? Sit at your desk, take a deep breath, close your eyes and for that moment you are there.
I won’t always have access to headphones when I’m stressing, when I’m lying in the hospital in pain, or when I’m doing other hard things that are going to help me recovery (re: physical therapy). So, this is an invaluable skill.
After using this, I feel like I took a vacation, or got a full night of blissful sleep. I feel calm, collected, and very focused, like I know just what to do and how to do it. The contrast is unbelievable since I spend most of my time scattered and panicky.
Now this one is my one less than positive review: this was not for me. If you like it, and it worked for you, that is awesome, farbeit from me to tell you that it won’t work– but for me it was just too far out.
I picked it up kind of randomly at the library, I was there to get a bed-top yoga dvd and saw this and left with it instead. Now… Ms. Huddleston offers some decent advice, she does talk about the benefits of relaxation and guided imagery. But it goes a wee bit further than that. She talks about talking to your organs, I don’t get the sense she means figuratively. She goes into lengthy conversations that her patients have with their soon to be missing/operated on body parts about how they would like to be nurtured or remembered. I didn’t get much beyond about page 50 because it was all a little too much for me. As I have said previously, I had a slight aversion to this all to begin with, and this just.. didn’t work for me.
Some of the other ways I have been coping is by keeping this blog and a personal journal to deal with the stress and the emotions, I know a lot of people regret their decision during the first few months after surgery, so I am hoping looking back on the pain and records of how exhausted and frustrated my pancreas makes me will help me remember that the decision I made was the best possible decision, even when I’m dealing with pain and discomfort from surgery. A vein tech (or whatever the technical term is) told me to lift a light hand weight each day to prepare my veins. So I’m trying to remember to do that as well as drinking tons of water and sleeping as much as I need to.
I will try to remember to review everything again when I’m well into recovery, to let you know what worked and what didn’t. Hopefully I will have some great news!