there and back again

Ah, Pancreatitis. It appeared in our lives like a bloke we can't quite place but who seems to know us rather well, who shows up at our door out of the blue. He ends up sleeping on the couch, managing to make it seem, somehow, as if we've no real choice in the matter. We think it'll just be a day or two, but he ends up staying a week. He's pretty annoying, in the way of flakey perpetual couchsurfers, but he mainly perpetuates run-of-the-mill irritations - drinks all the milk and puts the empty carton back in the fridge, cracks a couple of CD boxes, has a taste solely for our pricey beers and foody treats saved for a special occasion, uses one of our towels but can't remember which one, demolishes 'just a couple of slices' out of the cake prepared for a friend's birthday. That kind of thing. Some more spectacular incidents, like vomiting down the side of the loo and 'forgetting' to clear it up, and an infamous attempt to take a piss in the corner of the kitchen. More than once he invites a couple of mates over who defeat our strenuous efforts to turf them out and keep us up all night with terrible, not even as good as the-kids-today music. After a few failed interventions over an interminable six days, Pancreatitis finally sidles to the exit, and we breathe a sigh of relief.

A few days pass, enough to start thinking that the week of Pancreatitis was just an unsettling but now safely concluded annoyance. Then we walk in and find him sprawled on the couch. Again. We don't know how he got in or why he's come back, but it's certainly depressing to see him sitting there when we thought he was gone. And this time he's meaner.

He's aggressive, he's not leaving and he's a lot more frightening. We immediately enlist some professional help to get rid of him but no dice, he seems to have a key to our gaff and he's treating the place like he owns it. He never seems to go out, and he takes over more and more of the living room and then the bedroom, spreading his rubbish around while breaking or 'mislaying' our stuff. He completely destroys a couple of projects we were working on. We call in more professionals but all they seem able to do is placate him while he becomes scarier almost daily. He is now living in our flat with us while we try, and fail, to continue normal life around him.

Pancreatitis starts to turn violent and unpredictable. He threatens us more than once and we can easily imagine it reaching a point where we'll be in fear of our lives. It seems that no-one can do anything to make him leave, and we now have to share our flat with him, our own lives shrinking to a daily grind of dealing with his unpredictable outbursts while desperately trying to get him to go. We get as much information as possible about who he is and what can be done to evict him, but nobody seems to know much – this surreal situation seems to be a poorly understood grey area, and no-one knows why he's here or what might make him leave. We try everything we can. Apparently there are hundreds of other people in a similar situation playing host to an unwanted, scary 'flatmate', but no-one provides any better suggestions that might get him gone.

Some days seem interminable, others pass in a rapid blur. In more reflective moments we feel grateful for what the experience is teaching about acceptance, small joys and the important things in life, but mostly we use all our energy to cope.

After six weeks when things are either bad or getting worse, the situation starts to improve. The noxious tenant is still there, but he's less invasive, he plays his 'music' fairly low and dumps his stuff around the place only once or twice a day, and we're able to start reassembling a semblance of ordinary life around him. A few more weeks, a couple more incidents, he's obviously not going to leave any time soon but we're starting to think he will go eventually.

Then the professional eviction agent who has been helping us from the start says that actually, things are worse than ever – while more innocuous on the surface, this living-room horrorshow has been secretly poisoning us, stealing our stuff from under our noses, and plotting to remain in situ for years. The only option is a wholesale attack, undertaken with surgical precision. The eviction specialist and dozens of others sweep into action, and it's all over in a matter of hours. Pancreatitis is gone.

Two weeks of mopping up later, and we can slowly start to get our space back. The specialist tells us it's almost certain Pancreatitis won't return. We're shell-shocked and worn out after dealing with this invader for the last three months, but we begin to believe we've really gotten rid of him, and that we can start to rebuild our lives. A month or so passes fairly quietly.

Then we start to notice a couple of things out of place – things that don't belong to us appearing in our flat; some food gone from the fridge; unexplained stains. We can't believe that he could be back; our resistance is so deep that we outdo each other concocting alternative outlandish explanations. The eviction expert comes by, a scheduled visit to make sure all is well six weeks on. He's concerned at what he sees. And surprised. We try to think it can't be what it seems it must be. But it is. A day later, Pancreatitis is back.

He's not as aggressive this time, almost nonchalant – a few days of hell-raising and then he backs off. But now, apparently, he's moved in for good. He might not cause much trouble in the future, or then again he might. Probably he'll go away occasionally, maybe for months or years at a time. This 'visit' could be as bad as when he moved in first, or it could be very different. Maybe he's changed. Eventually we'll learn what he's like, how to manage him, how to live with him. We'll have to and we will. He's there now, on our couch, occupying our gaff, part of our lives. This time there'll be no getting rid of him. We'll live with Pancreatitis, and no matter how awful he is, we'll live well.

***
So much for the analogy. This is the reality. About two weeks ago, The Unfortunately Loyal Boyfriend wasn't feeling that great. He had been doing well, if tired and quite weak as he continued recovery from major surgery, but then he had about a week of hit-and-miss not feeling good followed by a couple of days of pain. On what would have been the third day of pain he had a scheduled check-up with his surgeon, which had been in the calendar for six weeks after the operation. That was the operation that was supposed to take care of the pancreatitis and its attendant complications, the operation after which there was (and I quote) "close to zero" chance of the pancreatitis recurring.

At the check-up, the surgeon was concerned. He said that a new pseudocyst (a sac of fluid near the pancreas) might have formed, though he also said that he'd never seen that happen. He wanted The Unfortunately Loyal Boyfriend to have tests, especially a CT scan, and thought it would be easier to do the tests as an inpatient. At the time this sounded plausible, if depressing because we'd hoped the hospital stays were behind us; later I thought that the surgeon was likely even more concerned than he was letting on and that in fact he was going the admitting-to-hospital route because of his suspicions.

So, last week The Unfortunately Loyal Boyfriend was admitted to hospital. Again. Where a day later the CT scan results came back and the doctor told him he had pancreatitis. Again. And after three days he was discharged from hospital, no longer in pain, with no cause found, to go home and hope for the best. Again.

That's the situation. The pancreatitis has recurred, a totally new bout, in a different part of the pancreas, the head this time. This bout has so far been very mild, probably milder than the initial week or so back in March. It is unusual for this to happen, and it has happened quickly, less than two months after the operation and less than five since the first bout began. It might just go away, or it might not. Whether this bout subsides quickly or not, it is now very likely that the pancreatitis will recur throughout his life. We won't know what that really means until much more time has passed. If it comes back once every few years, causes a few days of pain and requires some days in hospital followed by a couple of weeks having to take it a bit easier, that's one (not brilliant/not terrible) thing. If it comes back every few months and requires weeks in hospital and months of recovery, that is quite another thing. We have to wait and see.

The care he's received has been excellent so far, and probably the best in the country. Yes, we'll pursue all the avenues - thorough medical after-care, possible diet restructuring, getting second opinions, complementary therapies, medication possibilities – of course, we'll look at everything. But pancreatitis, especially the 20% of cases for which no cause is ever found, unfortunately is not well understood by medicine or any other science. And the treatment and management recommendations remain the same no matter what, and we've already done mnay of them. For now we'll cope and we'll hope. He has been out of hospital for a week. He's hurting a little today; maybe we'll be back at the hospital tomorrow; maybe not. But whatever happens we'll live with it. And live well.


The story so far:
Anatomical adventures
Home is where the pancreas is
Mr Whipple to the rescue

Mr Whipple to the rescue

It's been a long road, but we're hopeful that The Unfortunately Loyal Boyfriend has entered the last stage of full recovery from his pancreatitis. This experience was completely unexpected, pervasively uncertain and frequently changing throughout, with the situation and our knowledge of it altering fairly substantially every couple of days, and sometimes every day or every few hours. It continues to change daily even now. But it's evolving in a different way, towards full recovery.

He was discharged from hospital towards the end of May for the third and, we hoped then, final time, after a stay of only a few days. He was in quite good shape, judged by our radically revised pancreatitis-filtered version of 'good'. He still had the drain, a thin plastic tube surgically attached inside his abdomen that was taking out 100-150 ml of pancreatic fluid a day. As he put it, it took out about a Coke can's worth every three days, just to remind him that he was not allowed to drink carbonated beverages or caffeine. He was able to drink water, eat small amounts of a few foods, walk short distances and sleep relatively uninterrupted for five or six hours at night. He'd lost a large amount of weight and was quite weak and lacking in energy. He could only eat an extremely low fat diet as digesting fats put the most pressure on the digestive system and pancreas. He could have low fat milk and yogurt as he'd been given in the hospital, and we gradually introduced other low fat foods (less than 3 grammes of fat per 100 grammes) but avoided using any oil or butter in cooking, sticking to steaming and boiling food and grilling without oil. At the same time he couldn't eat foods in combination, but only very plain foods cooked separately, such as boiled potatoes, steamed carrots, broccoli, cauliflower, asparagus and the like, but over the next couple of weeks he was able to eat sauces and combined food – major progress.

Things went quite well and the community nurse returned to change the dressing in the first week, and it seemed then that it would need attention only weekly. Unfortunately a day later the dressing had to be changed again, necessitating a quick trip back to the hospital on yet another bank holiday weekend – sure what's a holiday without a hospital visit to hang out with our mates the nurses? As the drain seemed to be get blocked quite often, from then on the dressing around it had to be changed every day. The community nurse came to do this about twice a week and I did the rest, becoming proud of my novice nursing skills, filling a large medicine chest with extensive supplies, and gaining great familiarity with the intricacies of sterile dressing kits, sterile versus non-sterile gloves, saline, syringes, gauze and the versatilities of different types of clear plastic adhesives.

Things seemed to be progressing well and he was feeling better and better, able to eat more types and a larger amount of food, and overall we were hopeful that after a month or two of this he'd have the drain removed and be starting to fully recover. There was a second unexpected visit to the hospital when a consultant doctor checked up on him, kindly fitting him in as part of his rounds and for free, even though he was no longer a patient there. When we arrived, a nurse said, "why don't you wait in your old room?" He'd clearly made an impression as it was three weeks since he'd been on that ward. Somehow having a room in a hospital that is referred to by the staff as 'your' room doesn't seem like a good thing, it's not quite having a suite at the Chelsea Hotel.

After two weeks at home with a mere two hospital visits, it was high time for another procedure, namely an endoscopic ultrasound. This was done to give a better picture of what was happening in the pancreas and it could reveal microlithiasis, tiny pieces of gallstone 'grit' that had not yet formed into gallstones. This was the last remaining possibility in terms of providing a cause of the pancreatitis. While in theory the grit might have been revealed, with a relatively simply operation to remove it and cure the problem, I realised the night before the procedure that I'd no expectation at all that this might happen, I simply assumed the mystery would remain.

When we met the consultant two days later, he told us that indeed they'd found no grit, that the pseudocysts of fluid were smaller but still present, and that they had found a small amount of necrosis – dead tissue in the pancreas. This was not a good thing, and he told us he was now revising the description of the pancreatitis to 'severe' – also not a good thing. He told us that The Unfortunately Loyal Boyfriend would need major and quite complicated surgery to remove the dead tissue, remove the fluid, and make a new connection between the stomach and the pancreas. He also planned to remove the gallbladder, as he put it, "surely while I'm there it'll only take ten minutes" (or did he say five?). We were slightly in shock in this meeting, as surgery had not been a possibility prior to this. Apparently they never operate earlier than six weeks into pancreatitis, but this was now needed and it was also the optimal time to do it. The operation had a less than 1% fatality rate – small, but difficult to handle having to think about fatality rates at all. A list of complications "as long as your arm" that he wasn't going to tell us about. And it was a long recovery, "lucky" to get out of hospital two weeks afterwards. This was an excellent surgeon, one of the few in the country who deals with these kind of complex pancreatitis cases. If we hadn't been assigned to him in the first place, we'd have likely ended up with him anyway. He answered our questions, treated us with respect and we trusted him. Hey, he cycles every day between the four hospitals he works in, how could we not trust him? Asking if there were other treatment possibilities, the surgeon concluded by saying "you have no other options." Most importantly, this operation would take care of all the current problems and might prevent recurrence of the pancreatitis in the future, though that was unclear. After the operation, it was likely he would actually be okay.

The Unfortunately Loyal Boyfriend continued to feel better as we waited for the operation, and we even made it out for dinner on one wonderful day. A couple of weeks and he was admitted to hospital the evening before the surgery. The surgeon came around with his consent form. I asked for more information on whether there were any major complications that were likely, as opposed to just possible. He said "The only complication you have to worry about is death." Then he said he didn't mean to be flippant. And strangely I wasn't that worried. It could happen. But it was a slim chance and we had accepted that chance.

Thus two weeks ago at this time I was sitting in the lobby of St. Vincent's University Hospital, waiting for my partner to wake up after a major operation. I'd been there with him as he went from the ward, and had had to leave him, gowned and on a gurney, at the entrance to the operating theatre. A doctor, unprompted, promised, "We won't forget to call you." Three and a half hours later I asked the front desk of the hospital to call them; the receptionist held the phone telling me words that resembled "he's conscious, the surgery went fine." There were probably some other things said after that but I didn't take them in. He was awake and he was okay.

Other things happened after the operation. They called from the recovery room, told me it had gone very well, that he'd been out of surgery for over an hour, and that I could see him soon. He was moved to the High Dependency Unit, a room with three beds arranged directly opposite the nurses' desk, where patients are monitored closely, essentially a step below the Intensive Care Unit. He was there for four days, but only because he was on an epidural for pain relief, which has to be observed in such a unit. He was hooked up to a lot of machines and tubes, and the setting probably would have been a bit overwhelming if he hadn't recently spent over five weeks in hospital. At it was, this new situation didn't phase me at all, or him. Later we found out the surgery lasted an hour or so, much shorter than the three or four hours that it could have taken if it hadn't gone so well. The drain was gone, along with his gallbladder.

After a few days The Unfortunately Loyal Boyfriend was moved to a room in an ordinary ward.I learned that his strangely-titled Whipple operation was not an acronym as we'd assumed but named, fantastically, after Mr Whipple! Who'd pioneered an adapted form of it in the 1930s. And now it would have the result that he'd be able to eat ice-cream once again, among other rather more significant effects. In total he'd now lost about three stone (42 lbs or 19 kg) in weight. A week after the surgery, the last canula was removed from his arm, the first time he'd been tubeless in two months – no longer part cyborg. The surgeon crossed his fingers, made a nought and said that the chance of the pancreatitis recurring was as close to zero as he could say. And in keeping with the ever-changing nature of this whole process, the situation shifted again, but this time, for a change, for the better, when one morning the doctor suddenly said he was well enough to be discharged. It was three months to the day since the start of the pancreatitis. And now, surgery over, out of hospital, in the last phase of recovery, I feel that he's really going to be okay.

Home is where the pancreas is

Happily, soon after my last blog post, The Unfortunately Loyal Boyfriend was discharged from hospital, after a stay this time of almost four weeks. At home we coped fairly well with the almost-no-fat diet, the tube sticking out of his abdomen draining pancreatic fluid into a (very this-season) bag, which had to be emptied twice daily, and the general gingerly-does-it approach to all activities that characterises slow recovery from serious illness.

We had the first visit from the free community health nurse (yay public health system) and, far more incredibly, a visit from other people. You know, those people rumoured to exist but not directly employed in the health care professions, generally encountered during what are commonly known as social occasions, but the existence of whom had started to seem doubtful to a certain pancreatitis sufferer due to a lack of personal evidence of same during the previous six weeks. This doubt had also been assuaged the day before his discharge when, with fairly major effort by all concerned, he was able to leave the hospital for a couple of hours to attend the wedding ceremony of good friends. A most festive occasion and one on which he was happily overwhelmed with the presence of about thirty friends and quite a lot of people corresponding to the category of other. So a positive and intense weekend overall and wonderful to have him home.

Unhappily he began to feel sick again soon and due to an infection was readmitted to hospital six days after leaving. So if you're wondering how we spent the Easter bank holiday weekend while the rest of the country was at the beach in the unseasonably warm weather, that's our answer. Infections are a very common feature of pancreatitis, especially with pseudocysts which he has, so this wasn't altogether disastrous or a major setback. His shortest stay yet, and after four more nights as an in-patient – bringing his grand total to a roundly-square 36 nights in hospital over the course of just over seven weeks – he was discharged for what I really hope will be the last time. It's now nine days later and this is the longest period he has been out of hospital since this all started, and while things are far from normal they are radically improved and, all extremities crossed, will continue to get better.

Of course, that doesn't mean we haven't been to the hospital in the past nine days, don't be silly, we could hardly have four or five days go by without hanging out with our good friends the nurses. Instead we've had two unanticipated and brief trips back to the ward to have various things checked, but so far looking good. It won't be this week or next week but I'm hoping soon to have an entire week go by without a hospital visit of some kind. Such are our radically revised holiday aspirations.

Meanwhile I'll continue my efforts to provide some insight into this illness. It was pointed out to me by the principal subject of these efforts that the illustration for my last post is, apparently, of a female body. I had failed to notice this despite looking at it quite a few times, and perhaps because, as he hypothesised, I automatically view a female form as the norm, as he probably does a male. So in the interests of anatomical clarity, and for reassurance to viewers who may have feared that a little-discussed side effect of pancreatitis could cause breasts and/or a vagina to spring into existence, here is another illustration of a probably male or at least gender-indeterminate digestive system:

Also, if you are looking for more information, I strongly recommend the PubMed Health overview of pancreatitis, as well as its more detailed subsections on Acute Pancreatitis and Pancreatic Pseudocyst. PubMed Health is "a consumer health Web site" produced by the National Institutes of Health (NIH) in the U.S. It's a source I have found to be excellent – evidence-based, factual, clear, up-to-date and lacking in the hysteria, fear-mongering and dubious efforts to sell you stuff that are all too common when looking for health information on-line. PubMed Health is related to PubMed, a massive, publicly accessible database of 20 million citations from academic journals and books, which I used to use almost daily in academic research and which is a good place to visit if you want to dig further into academic articles on any health topic.

In contrast, I don't recommend the Wikipedia article on pancreatitis – it is very unclear, is quite misleading and incomplete in its emphasis, lists possible complications without giving much indication of likelihood or seriousness, and has both far too much detail in some places and not enough in others. The U.K.'s National Health Service (NHS) section on acute pancreatitis is quite useful, provides a measured layperson's analysis and gives some indications about incidence in the U.K., though not Ireland. Another reasonably good source is the WebMD overview on pancreatitis, though the overview and subsections are quite annoying to navigate and there are lots of ads sullying it.

Again, it's important to remember while reading any of these sources that what we're talking about in this case is 'moderately severe acute pancreatitis' - essentially at the upper end of mild acute pancreatitis, not the more serious 'severe acute' and definitely not the quite different and much more serious 'chronic pancreatitis'.

That completes the Great Pancreatitis Adventure update for today. He came home, he's still home, he's not in pain, he can eat - these are good things. Have been taking things day by day for about two months now, so until tomorrow, the whole world is my home. Hmmm, that's actually The Littlest Hobo. Point still stands. On we go.

Anatomical adventures

Do you know what the pancreas is?
Do you know what it does?
Or where exactly it's located?

A month ago, my answers to those questions would have been along the lines of:

Well, um, it's an internal organ, well, obviously it's an internal organ, you already knew that, but you know, isn't it something to do with the liver, or with the kidneys, or maybe both, isn't it? Maybe attached to one of them, possibly? Kind of small? I'm picturing it as red. Or possibly pink. An organy kind of colour. Possibly not that important, like, you could have it taken out, but also, possibly, vital, like you can't live without it, but, you know, I'm not actually sure about the quite important difference between those two options.

It's maybe something to do with processing blood? Or with the digestive system? Maybe? Enzymes, enzymes is coming to mind, not entirely sure why, maybe it does something with enzymes?

It's in the torso, that much I know, well, ok, that's pretty obvious too, no bonus points there. I'm thinking it's in the abdomen, lower part of the torso anyway. Again, thinking it's fairly small and sort of there (cue waving of hand around general tummy region). Ish.

That was pretty much the sum total of my knowledge of the pancreas a little over one month ago. Anatomy was never my strong suit, despite two years of Leaving Cert biology. Now, one month later, I know more than I probably ever would have wanted to.

Now I know that the pancreas is indeed an internal organ, and that it produces enzymes and hormones, particularly insulin. The enzymes go into the stomach to be used in digesting food. The insulin regulates blood sugar. The pancreas is in fact pretty large, seeming to be somewhere between 10 cm and 25cm (6 and 10 inches) long, and it kind of looks like a leaf, or at least is sometimes referred to as 'leaf-shaped', and it's sort of flattish. It is pretty much a vital organ. It is very much part of the digestive system, it is not in fact really much to do with the kidneys or the liver, and it has nothing at all to do with cleaning the blood. In terms of size, though not function, I was imagining something more akin to the gallbladder, which is very small, so I was totally off there. It's attached to the stomach via the bile duct and the enzymes go (well, are meant to go) straight from the pancreas into the stomach where they do their digestive work. It sits directly behind the stomach, on the left of the lower torso, and being quite large goes from the centre of the body out towards the left side, all the way behind the stomach. And probably, it is kind of red. Or maybe pink. That last bit, about the colour, I still don't know.



The reason for this rapid if still slightly vague increase in knowledge is that The Unfortunately Loyal Boyfriend (yes, he has approved this name, in fact, co-suggested and heartily endorsed it) has pancreatitis. Or more specifically, he has moderately severe acute pancreatitis. Pancreatitis is (because I didn't know this either a month ago, and probably neither did you) inflammation of the pancreas. Also, pancreatitis is not a good thing. And also, it's very, very sore. And also, pancreatitis is quite serious, and it can be very serious, but in this case it is only a bit serious. That last, at least, is a good thing.

So I also know quite a bit about pancreatitis. About 20% of the time they never discover what has caused it, and The Unfortunately Loyal Boyfriend is currently falling into that category. Most often pancreatitis is caused by severe alcohol 'misuse', which is in itself the severe misuse of a euphemism, as this is referring to, say, someone drinking ten drinks a day for a few years, very-probably-an-alcoholic type of misuse. Obviously that's not the cause in this case, as he drinks very little indeed, and has pretty much the opposite of, as he put it, "a life of bacchanalian excess." Another major cause is gallstones, which CT scans have revealed he also doesn't have. There are some other rare causes such as a couple of genetic disorders or reactions to particular medications, again these are not part of the picture here. So that currently leaves two main options: that a more detailed scan will reveal 'grit' or very tiny gallstones that are too small to show up on the CT scan, and that these are the cause of the inflammation; or that he is in the 20% of cases where they never find out the cause, and his pancreatitis will ultimately be termed 'idiopathic'. We're not holding out a lot of expectation for a cause or a cure, but we'll wait and see. Essentially we have an illness that appears suddenly, produces a lot of pain and requires hospitalisation, and no cause is likely to be found. Yay.

In terms of what has happened and is happening, he woke up one morning more than five weeks ago with severe pain in his stomach. Doctor thought it was duodenitis or gastritis, i.e. inflammation of the stomach or upper part of the small intestine, and prescribed medication accordingly. He wasn't able to eat and was generally very sick. When the pain got worse and then only a little better over the next couple of days, we went back to the doctor and then directly to hospital, where a CT scan showed inflammation of the pancreas.

Cue admission to hospital, intravenous (IV) fluids, IV pain medication and IV antibiotics. Also no food or water. The treatment for pancreatitis, it turns out, always involves admission to hospital, IV fluids, pain meds and usually antibiotics as prophylactic against infection, as well as giving the pancreas and digestive system a rest by not eating, so this was pretty textbook. He rapidly began getting better, the pain went away, and he was able to eat small amounts. After six days the inflammation was gone, he had no pain and he was off all the medications. He was in reasonably good shape, the doctors (and we) were happy (well, as happy as we could be), and he was discharged from the hospital. They said when he was discharged that there was a 20% chance of readmission within a week, that is just the way pancreatitis goes. Yay again.

So, he took it very easy at home, generally feeling okay and without any pain. It looked like he had had a fairly mild bout of acute pancreatitis and was recovering well, with maybe a couple of weeks ahead of slowly recovering to full strength. Actual yay.

Alas, five days after coming out of hospital the pain suddenly and dramatically returned. He had fallen into a second 20% category. He was back in hospital within a couple of hours and has remained there since, now 25 days. The pancreatitis was now being described as 'moderately severe', though it's important to realise that this is still in a very different category than severe or chronic pancreatitis, which involves hospitalisation in an Intensive Care Unit (which he has not needed) and which can be much more serious. Sometimes acute pancreatitis episodes resolve within a week to two or three weeks, sometimes they drag on for months, so he is currently somewhere in the middle of that spectrum. He has needed IV antibiotics, pain meds, fluids and drugs as before, but this time also some procedures to allow him to get IV nutrition, among other things. He didn't get to eat solid foods or drink water for days. Some of the time he was still in a great deal of pain, despite all the pain medication. One doctor told us that pancreatitis is one of the most painful things you can experience. And it usually takes a long time to get better. Really not so much yay.

Everything that was being done in hospital was helping him, and now he is much, much recovered. He has no pain, he's eating and drinking and most of the tubes are gone. He has even gotten to leave the hospital on a couple of days for a few hours at a time and finally they are talking about a discharge date in the very near future that seems likely to happen and not be delayed, as has already occurred. It seems like we are nearing the end of this acute phase, which is great, and we'll get through the next phases too, whatever they entail.

Writing here is to begin to explain some of this experience. Mainly to explain the facts of pancreatitis, the actualities of what's happened, to help make it clearer to others what it is about, at least the much greater though still limited understanding of it that I have gained. It will take me longer to write about how I feel, about how this has affected and will change our lives, about the many strangenesses and sadnesses and joys of going through this. Of going back and forth to the hospital every day, except today, of being there with him, and being home, without him. Of trying to understand what is happening and what it means, when we get new information from doctors and sometimes different predictions or explanations every day or couple of days. Of not knowing or half-knowing what the immediate term and longer term implications might be, and at the same time trying to ignore that quasi-knowledge and live only day to day. Of what it's like to see him get worse at times and now, thankfully, to get much better.

As he would say, this is now Day 40 of the Big Fat Pancreas Adventure, including 25 consecutive nights in hospital so far this time and 31 nights in hospital in total. As I would say, do what you can. As we would say, it is what it is.

And life, it's definitely an adventure.