Real-ish Food

Dina began having “cream of” soups tonight and will have her chest drain removed Monday morning

A Quick Update on Dina by John.

Her surgery on Tuesday went longer than expected, 7 1/2 hours, but it did go well. During the surgery they removed all of the abscess and her spleen which was integrated with the abscess, the vast majority of her stomach, and reconfigured her intestines to provide more absorption.

Yesterday she went in again for an exploratory surgery to see if there were any leaks or bleeders, but none was found and everything looked good. A chest x-ray was done and an area of fluid was present near her diaphragm. This morning they drained that fluid and installed a drain for that area.

In general, Dina is improving and is walking some. I am doing updates on her Facebook page.

Here goes…

I’m remembering to take a deep breath, let it out slowly, and relax the shoulders.

It’s important to do that sort of thing, rather than get stressed out.

About an hour after I got home from work this evening I found out that I’m having surgery tomorrow.

I’ve been NPO since January 1st.

I’ve been on several antibiotics – first oral, then IV. (Had an allergic reaction to one in there, too! No more Ertapenem for me!)

About a week after I finished the oral antibiotic my pain began to escalate pretty significantly, and I started to have some low grade fevers. So Dr. Zelko ordered IV antibiotics – they seem to be what’s been needed to do the trick for me through the course of all of this craziness. So the order for Ertapenem. Well that one didn’t work out so well – so got switched to IV Avelox.

Should do the trick, right?

I did get better a bit for a couple of days.

And then, not so much.

My pain began escalating again. And for the last three nights my fever has been back – and is climbing.

STINK.

My pain patch has been swapped out for one with bigger guns pain medication. Good thing – cause even with the patch on, I’m staying right around 7/8 on the 1 to 10 pain scale.

Not only that – my liver labs are starting to get funky. Sometimes TPN can mess with the liver. That seems to be the case for me.

So – the conclusion is – gotta get this surgery done.

So, I have to be at the hospital at 7:00 am.

Surgery is at 9:30 or 10:00 am.

It will likely last 4 to 5 hours.

I’ll be in the hospital at least a week.

So – keep me in your prayers, will you? That the surgeons will have wisdom, discernment, and great skill. That the outcomes of the surgery would be great – affording me a realistic/livable quality of life. That there are no leaks (I’m at high risk for that). That they are able to save my spleen (there’s a very real possibility that it will have to go – it’s been through a lot). That my mesh will not need to be replaced. And that pain control will be REALLY GOOD. Thanks friends!

The good news – the laptop seems to be all better. When I’m past the first few days of surgery, I’ll try and update from there.

More when I’m able.

A Conundrum…

Did you know that it’s possible for your knees to be pressed together and there’s this weird gap between your thighs?

I didn’t know that before.

It’s kinda weirding me out a little bit.

Stuff that I expect to stop at my lap – frustratingly enough – oftentimes just slides down through that little gap and to the floor.

That’s bothersome.

I think this is another one of those “thin girls know it, fat girls don’t” things.

I gotta admit – seeing the scale say 125 lbs is a pretty bizarre thing – and is causing me to learn all sorts of new things.

Strange, strange territory!

Oh no! Not again!

Do you ever choose to ignore something in hopes that it will go away?

I do that.

Sometimes I don’t to start with, though…. Kinda like how things started on December 4th.

I decided to sleep on my left side.

Doesn’t seem like such a big thing – but, well, I used to ALWAYS sleep on my left side. And I hadn’t since my ankle reconstruction on March 4th. That’s 9 months people. I felt like it was okay to do – and so I did.

I awakened the morning of the 5th of December with some twingy upper left quadrant pain that radiated to the left shoulder and by the end of the day I had a temperature of 99.5° F.

STINK.

By Sunday morning the pain had escalated quite a lot, and my temp hadn’t gone down at all.

I decided to speak to my friend Karen, who also happens to be one of my home health nurses. She’s arguably one of the coolest ladies on the planet, and just really, really smart – and she goes to my church and lives around the corner from me.

I found Karen after church and gave her the run down. She encouraged me to give Dr. Zelko’s office a call – to see if he was on call that night. By the time I called that evening my pain was in the 8 to 9 region (on the famous 1 to 10 scale), with spikes to 10. My temp was 100.5. As it turned out Dr. Zelko was, indeed, on call, and after clarifying a few points he directed me to wait for a call from Brittany the next morning, with directions about labs and a CT scan. He told me to take some of the pain meds that I had on hand and to go to bed.

The next day I went in for labs first – I was so appalled they wouldn’t use my PICC line! Hello! Why the heck not?! But apparently that’s the policy. Dumb policy, I might add! From there I went over to radiology and worked hard at choking down the *shudder* awful contrast that one has to drink. Blech! I did manage to keep from hurling it all over the floor, though – gold star for me!

The results? Yes, there was inflammation, and some free air – a few small bubbles. BUT – it was actually much better than the CT done previously – so it actually was improved! Go figure!

So Dr. Zelko directed me to take the next few days to take it easy, rest, use pain meds as needed, continue to track pain and temperature, and check back in with him by the end of the week. And I was to call immediately if anything were to worsen.

Lo and behold – after several days I was MUCH better. No more temperature. And my pain went down to a 1 or 2 level. MUCH better. Dr. Zelko was very pleased to hear that report. I was very pleased to give it!

PHEW!

Time went by, however, and the pain never went away 100%.  Fevers went away.  Pain, no. But the pain was so low I was convinced it would eventually dissipate. Ignore it and it’ll go away, right?! On the 19th, when Dr. Zelko had me come in to pull my PICC, we were both convinced I was ALL better.

I looked all better, didn’t I?

I really felt so much better – honestly!

I gotta be honest with you – it was somewhat heady, feeling better.

In late November when I was feeling much better, and was done with being NPO, I submitted an application for a job at a local hospital. I used to work for a different hospital in town some years ago and had continued to submit applications there -but they’re SO slow at responding – it would sometimes be a month before I even received a confirmation of receipt of my application. Not impressive. Imagine my surprise that two days after submitting my application for the job at the other hospital that I received an actual phone call from the manager of the department I had applied for the position in. He asked if I was still interested, and if so, would I be available for an interview. I said yes, and the next day we met for an interview.

It was a very positive interview, and the more I learned about the position, the more I believed I not only would enjoy it, I would be good at it. I was told that I was one of three serious candidates and that I would hear from another manager for a second interview in the near future if their interest in me as a candidate for the position were to continue.

A couple of weeks went by. I heard nothing. I assumed I would hear nothing further.

Then there was a call – from the other manager – and I was asked to come in for a second interview.

Wow!

The second interview went very positively, as well. I was told that if a job offer were to be extended, I would receive a phone call from the Human Resources department in the coming days. They thanked me for my time, and that was that.

The next morning I received the call extending the job offer. I accepted.

Me – employed.

Wild!

There were a number of things that had to happen before I could start – or the job offer would even be considered bona fide – though. Things like drug tests, a pre-employment health screen, etc. It took a while, but I eventually passed all of those things, and was scheduled to begin on December 28th.

The week of Christmas I noticed that my pain was baby stepping up.  From a 1/2 level to a 2/3 level.  Later in the week, from a 2/3 level to a 3/4 level.

I started my new job on the 28th of December.  My pain was up to the 5/6 level by then.  That night I had a temp of 99.5.  Both the pain and the temp continued to escalate through the week.  Wednesday night John and I talked and decided I should call Dr. Zelko Thursday if there was no improvement.  Thursday morning I called – I’ll be honest – it was bad – at about an 8 or 9.  Upper left quadrant pain – bad enough that it hurt to breathe, radiating to the left shoulder and arm.  Temp through the day about 100.  We played phone tag, Dr. Zelko and I – and at about a quarter to 4 we actually talked and he had me go back to the hospital (where I’d just left work) for another CT scan.  He met me there, watched as they scanned, then had a couple of his favorite radiologists go over my past CT’s and the one taken that day (the 31st – my birthday!).

They found there’s quite a lot of free air in there – meaning, there’s another perf somewhere in the stomach.  There’s a pretty sizeable abscess in the making – encompassing my spleen, a good part of the liver, and part of my stomach.  It’s higher up than the previous abscess and has been growing for some time – it’s just been baby stepping larger for so long that no one has paid it much mind.  Well, they are now.

The decision was made to bring me back into the hospital – Dr. Zelko walked me to the floor and admitted me.  He told me I’d have to go back NPO and on TPN again.

John looked at me when Dr. Zelko said that and said, “Bummer.”

I said, “You got me a birthday cake, didn’t you?!”

“Yep,” he confirmed, “Beaverton Bakery.”

“White with lemon?!” I asked.

“Yep.” He answered.

Dr. Zelko smiled and then said, “Okay – NPO after birthday cake.” He actually wrote that on my orders. The nurses thought that was so cute! He is the coolest, Dr. Zelko!

It was kind of like old home week going back to 6 Center. All of my favorite nurses were there – and there were hugs of welcome. They really and truly are the sweetest, most wonderful care givers there are.

Once I got changed, they called IV and – yep – you guessed it – I had to have a new PICC line placed.

Number seven since July.

Lord have mercy!

My IV nurse was very sweet. She said, “I’m feeling a lot of pressure here – I’ve never had to give anyone a PICC line on their birthday before.” She was laughing, of course. “Should I try to throw in some song and dance as a birthday gift?”

I said, “No, actually, if you could just do double the numbing stuff – that would suffice nicely, thank you so much!” And so she did.

Honestly – she was nearly as pain free a PICC placement as my hero IV nurse Skip – just a teensy weensy tinge of pain, and that was it. I was quite impressed.

So once the PICC was in place, they started IV hydration, antibiotics, and pain meds.

And my wonderful husband went home, got my birthday cake, and brought it to me. I did my darndest to try and eat a whole piece – it was huge – but I couldn’t quite do it. I tried hard, though – and got maybe 2/3rds of it down. Sigh, it was so yummy!

Can I just interject here – this is not the prescribed way to spend your birthday!

I did tell Dr. Zelko I had to be back at work on Monday morning at 9:00 am – and he said we could do that. That was helpful – and encouraging – to know it would be a brief stay. He did tell me that he wanted Dr. Halpin to go over my new CT and be a part of the decision making process. He was pretty sure we were going to be seeing a surgery in my future.

Ugh.

Saturday afternoon Dr. Halpin did come by to talk to me. She stopped first to go over my CT scans, talk to the radiologists, read over my records. She is detail oriented – I like that.

We talked about what had been going on, the chain of events since I’d gone off of TPN the week before Thanksgiving, etc. She told me that she believed I needed to go NPO and put my bowel at complete rest – three months of NPO and TPN.

Yes, I said MONTHS.

3 MONTHS.

But you know what? When you feel like crap and are in a lot of pain, well, it seems like not such a big deal. Later on it does – especially when you are ravenously hungry! – but at that moment, all I could think was “Yeah, I can do that.” and then said those very words to her.

She agreed that a surgery would be in my future. We talked about the options – and the fact that it would have to be an open surgery.

A big, huge, ugly, mongo, ickey, open surgery.

Have you ever seen my gut?

The gut that has a sheet of mesh from side to side and from top to bottom?

Here – this is not for the faint of heart – just to warn you – here’s a peek from when I had my hernia repair (May 2003).

Yes, those are areas of necrosis.

And no – the belly button never did heal – 18 months later it had to be removed before the green goo would stop.

That horizontal incision?

21 inches across.

The vertical incision?

18 inches long.

NO.

I am not looking forward to an open surgery.

YES.

I know it has to happen.

I’m just not resigned to being thrilled about it, okay?

So, I was in the hospital over the holiday weekend.  I actually got discharged Monday morning at 8:15 am and was at work by 8:30 am.  (Convenient that I only had to walk across the garden to get to work!)

As it so happens, Dr. Zelko, Dr. Halpin, Dr. Swanstrom, and Dr. Baltasar are all talking about what the best plan of action will be – in terms of timing, what the surgery will entail, etc.

I feel good that I’ve got such an awesome team of surgeons on my side.

I also feel incredibly blessed to have ended up with a job with some really terrific people. My manager is committed to making accommodations to make sure that I am okay – such an incredibly gracious guy. And everyone has gone out of their way to help whenever I need assistance. That’s pretty cool.

I am actually still in the training phase of the new job. I am an “on call” employee. I can be called to work at one of two of the system’s hospitals. I could potentially work anywhere from 6:30 am to 10:00 pm, and potentially seven days a week.

Since my TPN runs from 7pm to 7am, that means I go to work wearing the TPN backpack for a portion of the morning when I work the 6:30 am to 3:00 pm shift. I’ve had to do that a couple of times now, and it’s worked out fine.

Yes, I do come home from work pretty much completely wiped out. I change into my PJ’s, wash my face, mix my TPN, hook up, climb into bed and zonk out.

Have I mentioned lately what an amazing family I have? How thankful I am that they give me the grace to do what I need to? It’s pretty humbling to be loved so unconditionally!

So – that’s the scoop.

More later as I know it.

All gone!

This is my PICC line.

This is what my PICC line has to look like before showering….

That’s one half of a small trash bag (gotta love those Kirkland Signature 13 gallon trash bags!), and lots and lots of 2″ paper tape.

When I first came home with the PICC it took me – seriously – about 45 minutes to tape up the first time. Over the months I’ve gotten this down to ART FORM – seriously – less than a minute. This is something one should not be good at! LOL!

And this, my friends, is a little present from dear, sweet, wonderful Dr. Zelko:

Yes, that is one PICC-free arm.

And one girl who is VERY happy about that!

J

high-iron recipes | 5 Easy, Tasty, High-Iron Recipes | Rodale News

high-iron recipes | 5 Easy, Tasty, High-Iron Recipes | Rodale News.

Never wanting to be one to say, “I told you so!” I simply wait for articles like this one to underline the fact that I nag so many of you about iron and how important it is for so many things in your day to day life! 

This is a good – easy – read and has a few decent recipes to consider giving a whirl.

Getting out the gluten

Getting out the gluten.

I can’t tell you how many people – not just post-ops – I’ve talked to in the past year who have confessed that they’d recently learned that they were gluten intolerant.  My own dear, sweet, amazingly kindhearted Uncle being one of them!

What kind of blows my mind about this is the sheer volume of people who are learning that this is a problem for them.  It seriously rocks your world if you need to go gluten-free.  I thought it rocked my world going soy and HFCS free – but man, that’s almost nothing in comparison to gluten!

John and I have wondered if the fact that mainstream wheat is more often than not GMO anymore has anything to do with this.  Something to ponder, to be sure.  We try to make a concerted effort to steer clear of the GMO products – and let me tell you, not as easy as you might think!  BUT – worth it in the long run, to us, anyway!

Anyway – this is a great article on Gluten and the effects of celiac disease and/or gluten intolerance.  Of note – if you are a malabsorber with gluten-intolerance and are not doing something to modify your diet – that’s about the same as taking a loaded revolver and shooting yourself in the foot.  Not smart.  It actually amplifies the malabsorption of nutrients that we so desperately need in our diets – so take it seriously, people!

Obese air passenger in economy seat has picture taken – Telegraph

Obese air passenger in economy seat has picture taken – Telegraph.

This could have been me 8 years ago.  We traveled to Ohio from Oregon to spend he holidays with family.  I weighed 365 pounds at 5′2″ tall, and was wheelchair bound.  It was the trip from hell.  I was treated rudely – okay – more than rudely – hatefully is a better descriptor – by many that trip.  It was awful.

It just breaks my heart to see this guy – you know he’s in pain.  You know he’s miserable.  You know he’s humiliated.  You know that people have said horrible things to him.  You – like me – might know well the dilemma of being a super morbidly obese person with the need to travel a great distance – and air travel is your best option.

Is there an answer?

Obviously – I love the answer I found.  My DS is nothing short of a gift straight from the hand of the Lord God Almighty.

Is it for everyone?  Maybe not.

I started reading the commets on this article and could only go so far – it just was too painful.  PEOPLE CAN BE SO MEAN!  People who have no clue about what it means walking a FOOT much less a mile in our shoes have NO CLUE whatsoever about what is involved here.

Sigh.

So what do you think?

Any answers?

Insight?

Comments?

While I wasn’t eating…

Never in my wildest dreams did I imagine that going 9 weeks without taking sustenance orally would be a part of my life. Now that I’m officially sipping – as of Friday:

It seems – well – kinda like it was no big deal. IT WAS A BIG DEAL WHEN I WAS IN THE MIDDLE OF IT! Isn’t it funny how quickly our perspective of things changes?

During my season of not eating/drinking some interesting things developed:

1. I had an overwhelming urge to cook and bake. And so I did. A lot. And I’m still enjoying it.

    

2. I started thinking that chicken – which I’ve had a huge aversion/allergy to since my son was born nearly 13 years ago – smelled good. So much so, that I actually took a bite of some to test it out. Yeah, not so much. But at least it doesn’t make me want to hurl quite so much when it’s cooking now.

    

3. I took my first sips of Iced Green Tea on Friday and thought, “Hmmm… not so yummy.”

    

4. I took some sips of iced water – which I’ve pretty much hated since my DS 7.5 years ago – and thought, “Hmmm… YUMMY!”

    

5. I found that I REALLY like being home more.

    

6. I learned that I wasn’t as much of a wuss as I once thought I was. Dealing with the PICC, hooking up infusions, flushing lines – all of it, no big deal. I can’t believe what a baby I was when Dr. Zelko first told me he thought I should get one.

    

7. I met some really amazing people along the way – the home health nurses are at the top of the list of truly wonderful, compassionate people.

    

It’s been a really interesting season of life. I’d never have scheduled it into my life plan, of course, but I’m grateful for the good things that have come about because of it.

They started tapering me off of the TPN on Saturday. They did half volume Saturday night. And then Sunday night half volume again, over just 8 hours (rather than the customary 16 hours). Then Monday morning (yesterday) was the last time I had to unhook from TPN. Happy day!

I do still have my PICC line. I just got off of the phone with Dr. Zelko – and I have official permission to eat whatever I want. Although he told me he wants me to fire up the protein first engine – my albumin level is pretty sucky right now. Pretty much, eating is going beautifully. No pain, no upper left quadrant pain, no fever. Just normal stuff. Normal is good.

Dr. Zelko sent me for another iron infusion yesterday, too – I finally got to meet Dr. Ye, the hematologist at Pacific Oncology who totally gets it about malabsorption and iron labs. Because I hadn’t had a reaction to the iron the last two infusions I had, we decided to give the infusion yesterday a go without a Benadryl pre-treat. Yeah – well, it was a nice thought. I did have a reaction pretty immediately – shortness of breath, vomiting, spike in B/P and pulse. They got Benadryl on board in quick order and then everything was fine, and they went forward with the infusion. I slept through the afternoon, pretty much. And I feel fine today.

I will say that going to an oncology center for iron infusions should be required – it really helps give one a sense of perspective on just how blessed one is! I do have a comment to make though – the nurses there were SO impressed with my PICC line. The poor chemo patients they try so hard to get a line for – and then once all of their veins are blown, they give them a central line. WHY THE HECK DON’T THEY JUST GIVE THEM A PICC LINE? HELLO?! SO MUCH EASIER! I know – it’s a bigger deal for placement, but dang – so much easier once it’s all over and done with.

Of note… The past many months – gosh, I don’t know how long – maybe since I first got sick in April – I have not slept through the night. The past 9 weeks, and the weeks prior when I was hospitalized (cause they don’t believe in letting you sleep through the night in the hospital!) – it was pretty routine for me to be up at least every 1.5 hours during the night. When you’re on TPN and your fluid load starts at 9pm – well, nature takes its course and you gotta pee – a LOT – during the night! Last night – my first night off of TPN – I actually slept through the whole night. It was wonderful! I’m looking forward to many more nights of the exact kinda stuff! J

So… I’m easing back into life quite a bit healthier than I’ve been in quite a while. I like that. I like it a lot.