Friday, October 8, 2010

Octoberfest-ive


Candids: Day 1

** "Candids" is a 30 day random question / post thingy I am going to do.  I got it from Karla here.  I'm starting at a totally different time, obviously, but sometimes I like to do these random post things just to make me think.  I also don't usually like to post photos of myself, so this will be a challenge!  I am trying really hard to keep it real and remember that my kids will want to see pictures of me someday, but still!  The usual posts will be interspersed as well, so make sure you don't miss any!



A photo of yourself and a description of how your day was.

This is me today.  Fortunately I'm actually nicely dressed since I went out for a bit this afternoon!  Still no make-up and my hair is just finger-combed.  Oh well, this is me.

Today was a better day.  I'm still having a bit of a rough time sleeping so I've been really tired.  I was able to take a nap this morning which helped a lot.  I even ate some food for lunch *and* for dinner!  That's an improvement in my appetite for sure.
We picked up the girls from school and did a little grocery shopping across the street from the school.  Their school shirts finally arrived today so they were very excited to show us their new gear.  Never for two years in a row have they had the same color of shirts.  They've done brown and pink, red and gray, and this year teal and yellow.  Those are the ones I remember at least.  Oh well, they're fun anyway.

Sunday, October 3, 2010

*This* is what marriage is all about.

I have a really great real husband. 

He's not perfect.  I don't expect him to be perfect.  Sometimes he drives me crazy.  Of course, sometimes my mom drives me crazy, and my kids do too, my siblings... all people I love unconditionally.  So that doesn't count.  He's great.  And I love him.
I have at times worried about being a burden on my husband.  I am not physically capable of doing all I feel I ought to do as a homemaker.  I wish to be able to do the laundry, make regular meals, shuttle the children around, arrange play-dates, have guests over, do the dishes... the usual stuff.  But my body has different ideas.  So instead of coming home to a tidy house and dinner he ends up coming home to help get something for us all to eat and make sure all the right meds have been taken at the right times.  We've spent thousands of dollars this year alone on medical costs for me instead of ever going on a family vacation, paying off the washing machine, or other such exciting ventures. 
With all this on his plate, let me share a moment tender to me from when I was in the hospital that depicts marriage as it should be.



One day after a mandatory walk around the surgical floor I was whimpering in anticipation of getting back into bed.  I could sit down on the bed, and it was inclined up as far as possible to a sitting position.  But I still had to lean back against the top part of the bed.  It doesn't sound like much, but it was enough.  Too much. I sat and I turned and got both legs onto the bed, but was afraid to lean back.
My husband leaned down and wrapped his arms around me tightly.  He said "It's okay, just trust me.  Let go."  Not without a little anxiety I relaxed my muscles and he gently leaned me back against the bed with as little pain as I ever felt.
After that there were several more times he helped me get back into bed.  I learned to trust him.  He did everything possible to ease my pain. 

Isn't that how marriage should work?  Not just with stitches, but with everything.  We should be wrapped up enough in each other that at any time we can say "It's okay, just trust me" and rely completely on the other to take your burden as their own.  Likewise we should be ready at any time to take the burden of our spouse.  Ease the pain.  Any pain.  Difficultly at work?  Hard day at home?  Personal crisis of any sort?  Ones spouse should be a foundation there to hold them up.  Complete honesty makes it easy to trust each other.  And when you each find times of pain there is someone to ease you back to comfort.

Married?  Be this person for your spouse.  Not married?  Hold out until you find someone who will be this person for you.  It's worth it.  Trust me.

Friday, October 1, 2010

One week. No kids. No chores. No thanks.

Here is a peek at my week away from home:

First I got Nellie ready to come with me.  I particularly love the bunny slippers :)

The day after my surgery the girls came to visit me.  Actually they were able to come most days to visit.  It was always something to look forward to.  They were really great about dealing with a strange situation.  Lizzie was a little worried at first, but after Daddy took her for a walk and talked to her for a while she was feeling better and ready to come in.

Sabrina sitting in my wheelchair that was waiting for walk-time

Lizzie feeling better

With my girls.  And my teddy bear.
Love these people with me!

Some of the beautiful flowers (check out that awesome froggie tea-pot!!!) and cards that I received while in the hospital.
They really brightened up the room.
Keeping me going...
Michael hanging out in the "super comfy" chair...
with all the posh ameneties.
Good ole I.V.... to start with at least.  I did remember to request a bit of gauze under the circley part to avoid cuts into my arm.  Painful previous experience taught me that one.
Every night a phlebotomist would sneak in and steal my blood.  They'd slip in at about 3am, barely wake me up, and slip out with a fresh vial of blood.  Fastest blood suckers I've ever met!  They were really good at their jobs, I tell ya.
The first day or two after my surgery I was not allowed anything.  No food, no beverage, no ice chips.  Nothing.  I was allowed some bits of sponge on a stick that I could get damp and swab out my mouth with.  The next day or two I was allowed 500 ml of water per 24 hours.  That's about 2 cups.

Finally they let me drink.  Ahhh, blissful water!!!!!!!!  And I'd been there long enough to merit a REAL cup too.  Very exciting.
My stitches are all under the skin with the skin held closed with steri-strips.  Nicer than staples or external stitches.  Those itch even more.

On Sunday afternoon a group of college students came by and offered to sing some hymns. They sang us "I am a Child of God" -- because that's what the girls would have chosen -- and... I don't remember what else.  I only remember that one.  We had been visited in the morning with a couple to offer us the sacrament.

Another look at my sunshiney spot.  It was the one bright spot considering the rest of my view:
this is my standard not-exerting-myself view.  Riveting, I know.
If I *really* twisted around I could see the tippy top of Michael's head through the bars of my bed.
Though the camera could do a better job of twisting around than me.

This is when dinner started getting exciting!  I had a baked potato!!!  Of course, I couldn't eat the soup cause it took most of the week to get them to get my food allergies straight, but finally having something to chew after several days was nice.

That first picture of the I.V.?  Yeah, that was when it was pretty.  I'm sensitive to the adhesive on the plastic tape and it started to burn on my wrist.
  I finally got it switched over to paper tape bit by bit. 
 Even now I have blistered, calloused spots on that wrist that are healing from the adhesive.  I think if I ever have this to do again I'll remember to add "paper tape" to my requests with the "gauze under the I.V.".  No point in doing this multiple times if I'm not going to get better at it!

 Another afternoon visit from my girls.  We read a little bit and I just loved having them close to me.
 I don't remember where Kate got this ring from, but she loaned it to me.  It didn't fit very well... even on my pinky finger, but it was very cute of her. :)

My night-time view really wasn't any more delightful than during the day.
 ...yet I felt inspired to photograph it nonetheless.
Trust me, I heavily edited the pictures.  I deleted probably 90% of the pictures.  But it was something to keep me occupied.

Michael's little nest in his chair.  It didn't lean back even halfway, but he made it as cozy as possible. 

Nellie snuggled up in her bed too.  Michael gave me the super snuggly blanket.  They kept taking it away from me the first few days because of my fever.

A few days in I developed double vision.  It made seeing quite obnoxious.  I also discovered that I had audio hallucinations.  I would hear music playing as if in another room constantly.  One afternoon it was loud enough to wake me up from a nap!  Yet nobody else could hear it.  Ever.  As my vision got worse the doctor became concerned.  So I was given pants (woo hoo!) and sent to an ophthalmologist.  The eye doc determined that there was no obstruction to my optic nerves.  My right eye was slow in responding while tracking inwards.  Most likely a reaction to being on the hefty pain meds for several days.
 Then he gave me these groovy Matrix-esque sun-shades and prescribed an eye-patch to cover one eye or the other to avoid the double vision.

Yeah, it's a rotten picture.  I was very blind and drugged at this point.

This was the most incredible chicken.  It tasted less like chicken than anything I've ever eaten.  It most resembles reconstituted sawdust.  I have never eaten attempted to eat anything so dry.  My appetite was entirely lost by this meal.  I was d.o.n.e.

Fortunately I didn't have too many chicken pieces to attempt.  After 7 haze-filled days I was finally allowed to leave.  Nellie and her new friend got dressed to go home.  I'm afraid her friend doesn't have a name yet.  I'd better get the girls on that.  They always come up with way better names than I do.
 Getting all our stuff together to leave.

 And here's a new game -- it's sort of a tic-tac-toe on my belly between all the incisions.  I have 4 scars from my choleocystectomy (gallbaldder removal), 3 scars from my appendectomy, one long one further down from my c-section, 3  short ones and one more long one from this GIST removal.  I guess it cuts down the number somewhat to know that three of those scars take up only one spot just below my poor distorted belly button.  I hope once the irritation from the steri-strips is gone it will look a little more human.

Friday, September 24, 2010

another update.

I think it has now been over 48 hours since my surgery.  It was expected to take 45 minutes to an hour though it *might* have to be done as an open surgery instead of laparoscopic.  In the end the surgery took nearly 3 hours, had to be done through an incision about 5-6" long, and left me with 4 fewer inches of the transverse colon.

Apparently after entering with the scope the surgeon could not find the tumor.  So he had to open me up to go huntin'.  Even opened it was hard to see the tumor.  He could feel it, though, and recognize it.  Rather than being 1x3 centimeters in largeness it's 2 1/2 cms in diameter which is more than double what he was expecting!  The tumor was also entangled with some significant vessels heading to the transverse colon and was growing through it too (assuming I am remembered this right!)

I was finally taken to the recovery area, then up to my room for the duration of my stay. 

Then things started to get a bit nerve wracking.  My temperature went up (nearly 103!), my blood pressure went way down (mine is usually around 110ish/65ish to about 97/46.  My pulse rate went up (currently about 125) and my oxygen sats went down (I keep pushing the edge just close enough that I am stuck with the cannula for a few hours, then off, the back on...  that tickles the inside of ones nose SO much!!!  Also my white blood cell count was elevated but today is now the almost normal(after 3? 4? MEGA doses of antibitics.).

This morning my doctor told me that yesterday was really worried.  My body was just screwed up!  Now they've done additional xrays of my lungs to rule out pneumonia, a few more sets of blood work so they can see trends in my blood work.  I;m still crazy exhausted, practically narcoleptic, and highly confusable. 

Oh and despite the fact that the final pathology reports are still out there, he has all but crossed-his-heart-hop-to died that the tumor was in fact a GIST.  Good news is that they can respond easily to treatments.  Bad news is that they're hard to find and usually arent found until they're quite large.  Mine is near the low end of middle size.

Michael and I each received a Father's Blessing on Sunday which was very clear that there are things I still have to do.  It may be a few week still they've decided on which protocol will be the best one to treat this situation.

I hope that at least cleared things up a bit.  I am typing with the pulse-ox monitor and at least 80% asleep.  WIll update again when there;s something new to add in or answer question.

Love you
<3 <3 <3

Monday, September 20, 2010

Cheers! (And other surgery details)

 Today was my appointment with my surgeon to discuss my abdominal mass.  Which just sounds like a polite word for candy-gut, but really isn't.

He gave me a few more details from the CT report.  The tumor is just off the transverse colon.  The tricky thing is that if the tumor is mixed up in the colon they may have to cut into it some.  And if the tumor is mixed up with any major blood flow to  a section of the colon they may have to cut out a section.  We'd rather avoid those things... not that there's anything we could do to change it... but still!  My colon has enough trouble without cutting into it!

So I have to do a bowel prep (same as colonoscopy prep) before the surgery just in case.  It involves drinking one of those bottles of Pure Evil, sitting in the bathroom for six hours, then drinking the other one and trying to keep them down long enough to let it do its job.  I have serious opinions on the subject, though I don't think I could put it any more clearly than Dave Barry.

Tomorrow is "prep day".  I have an appointment at the hospital to have labs and tests run, then I'm hoping to run to Build-a-Bear (cause a sweet friend sent me a gift card to build myself a surgery buddy and I'm SO excited about it!!!  Love you!!!), then do the liquid roto rooter.  That will take up all day tomorrow.  I'm on all clear fluids tomorrow until they say I'm not any more.

Wednesday is "surgery day".  Tomorrow evening they will call to tell me what time to arrive.  Since I've already pre-registered by phone, filled out pre-admittance online, and will have been pre-poked and prodded in the lab it shouldn't take so long to get into surgery.  The surgery will be done at Utah Valley Hospital (UVRMC).  It is being handled as an admittance procedure rather than out-patient.  There is a *chance* that I might make it home wednesday, but most likely I'll be kept overnight at least. 


There are several factors for when I'll get to leave and none of them can be answered until I'm not conscious (at least I'd better not be!).  Hopefully the procedure will be laparoscopic, but depending on size, exact location, complexity, etc. they are going to be prepared to do it as an open surgery which will be a lot longer recovery and hospital stay.  And of course if they start fiddling around with other organs that would complicate matters as well.

It will likely be two to three days before we hear the pathology report.  Then they'll know what happened or is happening to cause such a nuisance.  At that point they'll discuss management of the cause which will hopefully be to do the one surgery and be done with it.

There are many people who have offered to help us out.  I really appreciate it!  I fully intend to be unconscious for the majority of the time when help would be useful, so Michael is the one to talk to about that.  I particularly appreciate the love and prayers of so many.  It is a miracle to have found this in the first place and getting it gone will be a big relief. 

When we have more information we'll keep people updated.  We're hoping to settle down to be happy, boring, healthy people in no time at all.

Monday, September 13, 2010

Just a tad nervous.

Many of you will already have heard all of this by  now.  Feel free to skim read or just skip it altogether.  I just didn't want anyone to have an excuse to have not heard the latest.

I've been feeling "under the weather" for a month or so lately.  Not really specific symptoms of anything, just nauseous, achy, elevated temperature, right side flank pain, etc.  I finally went to see my doctor last week.  He ran blood tests, urine tests, etc.  Everything came back normal!  Except some blood in the urine.  So he scheduled me for a CT scan this morning. 

Usually when they suspect kidney stones (which I'm a bit of a pro at) they do a KUB (an xray of the kidney, ureters, and bladder).  So I was a little surprised to jump straight to the CT scan.  But I've been feeling so "off" that I was willing to do the more detailed study.  I've had several abdominal CTs in the past pertaining to kidney stones so I knew what to expect.  After the three runs through the machine the technician said she could see a small stone, but wanted to run the IV contrast to rule out any non-calcified causes for the pain and bleeding.  This is the first time they've done contrast.

I expected to get a call back from the nurse tomorrow or the next day or so, to tell me that I have a small stone and deal with it.  I was surprised then to get a phone call from the doctor's office within an hour of the scan.  I was even more surprised that it was the actual doctor himself!  He told me what I knew: "they see a small stone in there, still in the kidney.  It could be causing the bleeding so we'll just keep an eye on it."  Fine.  That's what I expected until he pulled out the "but....."

The radiologist compared my new CT to the last one they'd done for the same reason back in 2008 and they found a lump.  A tumor.  It is apparently located by my colon, though not involved with the colon (meaning that the colon hasn't caused the tumor, nor is the tumor causing complications in the colon).  It is oblong, measuring at 1 centimeter by 3 centimeters.  There is no way to know whether it's cancerous or benign until it has been removed and studied.

I held on the line while I was passed off to the nurse so she could make arrangements for me to see my general surgeon -- the same one who removed my appendix.  I will see him next week for a pre-op appointment and to schedule the surgery.  The surgery should be laparoscopic and I assume it will be an outpatient procedure.  I expect it will be a couple days after the surgery before I hear the results.

The doctor suggested three possibilities for what the tumor could be:


1) Carcinoid tumor.
This tumor can be benign or malignant.  In about 10% of cases it secretes hormones which can make your body seem really "off"  (sound familiar?).  In order for the hormones to get into the bloodstream to cause changes, though, the tumor has to have metastasized to the liver.  This is a very slow growing tumor and is often missed.  The cancerous version does not respond well to treatments, but can sometimes be removed if caught early enough.


2) Lymphoma.
This would be bad.  It is cancer, of course.  It can be treated.  There are nearly 50 different versions of lymphoma and details partly depend on the version.


3) Desmoid tumor.
These tumors are malignant.  They can be very difficult to get rid of, however, and can cause a lot of damage to organs.  In many cases they recur.  It can be treated with surgeries, lots of watching, and perhaps radiation/chemo.


Personally I prefer option 4 -- a short stack of dimes.  Or perhaps a small Vienna sausage?  I mean, my body does strange things.  Why not be unusual in my tumor growth too?! 

I am nervous, of course.  However, I have a strong feeling of peace and know that I've been well taken care of for this to even have been discovered.  I know that somehow this will work out just fine.  I just really don't like waiting to find out how!

So now you know.  I'm sure I'll update when I have more information.  I appreciate prayers I know so many of you have been saying on my behalf.  We just gotta get through this next bit.