I didn't realize how many people would be so concerned about me when I went in for surgery, but wow! The outpouring has been amazing, and so I thought I'd tell the story of this miserable chapter in my life. Thank you, everyone who has sent encouraging words and prayers my way!! It has been MUCH appreciated!!

Okay, here goes (this is probably going to be very long...):

Back in the summer of 2011, I was frustrated with myself because my ankles had been swelling for a few years. I went to my doctor about a year earlier, but he said I was simply overweight and told me to walk more and take these diarrhetics to make me pee. Well, that was stupid because the swelling had started when I was much lighter, and at my young age, something had to be up for something like this to be starting, but I was a compliant patient and did what he said. Until I couldn't take it anymore and out of frustration I changed doctors last summer. I told my new doc about my ankles and he was not too concerned, but agreed that it certainly wasn't normal, so he ordered a CT scan. I got a phone call a few days afterward from the nurse, saying that an MRI had been ordered. Hmm... So I'm at the MRI place, lying on the table and the tech said something about an "abdominal mass". What?! A mass?! She said that that was sort of a catch-all phrase and I shouldn't be worried about it. Mm, hmm... I eagerly awaited a follow up appt. with the doc to find out what the results were of these tests. A couple of weeks later (ugh) I found out: there was a possible mass on my pancreas. I was being referred to a GI doc.

The next week was one of the most terrifying weeks of my life. A big mass on my pancreas. A cancer. Pancreatic cancer. I had cancer insurance but it wasn't all that great of coverage, but it would help. I researched pancreatic cancer and was off-handedly told by a beloved uncle that my great-grandmother died of pancreatic cancer - he didn't know I might have it. I did a lot of crying that week... VERY few people survive that fast-progressing disease... :o(

I saw the GI guy, who was extremely sweet and caring, and he told me that he would be VERY surprised that if it was cancer, as the report didn't really sound like it. It sounded to him like it was just a large aneurysm (ballooning in the weak place of an artery, that can burst) in a very hard place to get to. He referred me to a radiologist at the hospital who would perform an angiogram (they run a catheter tube up a large artery at the hip/groin) and try to "clog" the aneurysm that way. This was great news! No cancer!! And this guy can fix the aneurysm with a simply angiogram!

So the big day arrived (I believe it was September about this time) and I happily prepared for my test. I would be sedated, but not put under, cause they needed me to breathe deeply at different times for the contrast/radiation, and I needed to be able to cooperate. The sedation was terrific and I tolerated everything fine. I was out of it though, so I was not really comprehending what was going on and didn't worry about it, but later, I realized that there were quite a gaggle of doctors in there all talking fast, naming this artery and that artery (did I care? No, I was enjoying the meds!). In recovery, hubby Mark told me that they couldn't do the surgery at this hospital as it was far too complicated and that they quit half way through as they were afraid of killing me if something went a tiny bit wrong. Huh?! No easy fix?? He said doctors were scurrying in and out of the room and everyone looked very worried. Yikes... So the doc told us that in no way could anyone at that hospital or even in this county handle my situation as the artery was huge and in a terrible location - behind my pancreas, very near my aorta, in a place that was unheard of. Lovely!! They would try to contact a doctor in Miami that might be able to handle me, and they would let me know. :o{

Over the next couple of weeks, my leg/hip/groin hurt terribly, and I was covered with a huge bruise, but my main concern was finding a doctor that could help me!! It seemed to take forever for a referral to Miami, so I asked for my medical records and referred myself to Mayo up in Jacksonville. Hubby has been seen there and we were both very impressed with it. What could it hurt?? I called and asked if they had a vascular surgeon who could see me for a Superior Mesenteric Artery aneurysm fix, and they said yes and to send the records and they would see if he would agree to take me on. I did and he did and we had an appt. Yay!!

A couple of more weeks later (this was taking forever!) Mark and I went up there. The doc was extremely nice and caring and very interested in my case. He showed us the images from the previous angiogram and indeed, the aneurysm was very big (greater than 5 cm). He said he would take my case, but he wanted to consult with other doctors. The long and the short of the story is that an appt for another angiogram was made so they could pinpoint the area better, and on their own machines, and he wanted to send these images to the other docs at the Rochester and Arizona Mayo's so he could get their opinions on how to handle all of this. Obviously, I was very much an anomaly, as he got sooooo many other surgeons' opinions!! I appreciated this a great deal, as he did change his mind about how to proceed a couple of times.

One surprise that was found on the Mayo angiogram was that not only did I have 2 aneurysms (the huge one and a smaller one on a nearby artery - the Celiac artery) but I had a very bad constriction on a third artery leading to my liver!! Apparently, the constricted artery was requiring the other arteries to work overtime to supply my liver, and hence the aneurysms had formed. This was good to know, as all of the doctors were quite stumped as to why I had them in the first place!

Eventually, a plan was formed: they would do another angiogram (this would be my third!) through the left groin/hip and also inside my left elbow.  They would "clog" the aneurysm that way.  They would also place a number of stents here and there.  The next day, the head honcho from up in Rochester would fly down to do my second day's surgery, which was a laporoscopy of my abdomen and it was his job to clip the restricting bands that had formed around that third artery.  That all went well, but apparently, a couple of the stents they placed on Day 1 had cracked or something and they needed to go in again and fix them!  That was 3 days of surgeries in 3 days.  God was SURELY watching closely over me cause I actually tolerated everything pretty well!  No, I was not comfortable, and not without pain, but the nursing care Mayo gave me as I spent several days in their ICU was wonderful and Mark never left my side.  I don't remember much, but what I do remember is fairly vivid.  I remember being so weak that physical therapy had to help me stand - my legs were so weak that standing on them felt foreign to me!  (Gives me a better appreciation for some of my patients.)  I was so weak that they had to use a Hoyer Lift to get me from bed to chair (for those of you who don't know, this is a sling that carries bedbound people from place to place because they are too weak to stand).  I tried eating after my 4th day and it was not my favorite thing to do, but I did try.  Mom was home taking care of the kids and dogs and I was able to focus my attentions on resting.  ;o)  On Christmas Day, I got to go home straight from the ICU.  Later, we all decided that was a day or two too early, but I had kids and I had to get home for Christmas.  Moms, you understand, I know...

The first several days home were tough, as I was EXTREMELY weak and miserable from everything, but Mom and Mark were absolutely terrific and I had few cares other than myself, of which I am grateful beyond words.  I am never really sick, other than a cold (I don't believe I've ever even had the flu...) so being really and for truly laid up was a new experience!  I needed help managing my clothes to use the bathroom; I could hardly take a shower as my arms were so weak I couldn't wash myself (and our shower is too small for a helper - not that I would have allowed one...!  lol)   Steadily, however, I did get stronger and stronger and eventually was able to tolerate short trips to the grocery store and the like. 

When I was still in the hospital, the vascular surgeon came in one day and told me that because of the massive amounts of radiation they needed to use for the marathon angiograms, I might suffer some slight "sunburns" on my side and back.  No sweat.  After what I'd been through, I could handle anything!  And sure enough, just as I was feeling good again, I noticed a very large but slight burn mark on my left abdomen (between bra line and waistline).  This must be the burn he warned me about, I thought.  The next day, a small blister had formed near one corner and sort of peeled.  I put a bandaid on it and several hours later, I took it off to find that the adhesive on the bandaid had peeled a solid chunk of skin off with it!  Oh, no!!  Over the next few days, the burn got bigger and deeper and more and more raw.  The dermatologist gave me some silvadene and some bandages and told me to keep it covered and moist.  Then the burns on my back appeared, and my right waistline.  The one on my abdomen eventually because HUGE and DEEP, measuring about 4X8" (just the exact size of the bandages we bought!) and the one on my back was of similar size, but not as deep.  The one on my right waistline was smallest, about the size of a cookie. 

The arrival of these burns meant my return to work would be impossible.  This was the beginning of my fourth week off work, and I really needed to go back!!  Disability payments aren't much!!  But there was nothing anyone could do.  I was doing 4-6 dressing changes per DAY, and going through gobs and gobs and gobs of bandages.  The pain was ridiculous.  We made many trips to Mayo for followups and those were torture.  The only way I could tolerate the 2+hr. trip was to recline the seat way back, wrap myself up in Mark's coat, put the "C" pillow in my neck and go to sleep.  Moving was torture; getting out of the car was torture; walking the halls of the building was torture.  Forgetting Mayo, just lying down was almost impossible.  With a huge wound in the middle of my back, one on my right side and one nearly on my left side, and not being able to lie on my stomach due to my surgeries, sleeping was always a challenge.  Eventually, I figured out that I could situate my pillows in such a way and lie on my right side as long as my pajama bottoms were not at the level of the burn and the sheets were smooth and if my right arm (which was suffering terrible neuropathy from the last angio) was positioned in such a way and if my left arm was resting in front of me and not on my left side...  then, I could sleep.  Or, at least lie that way for hours until I had to get up to use the bathroom or do one of my UMPTEEN dressing changes.  This was my life for about 4 weeks.  Don't envy me. 

EVENTUALLY, the burns healed.  The ones on my back and right side healed fairly quickly, but the one on my abdomen, while dry and mostly healed, still hurts and isn't quite healed.  It is the 10th of May now.  The burns erupted the 3rd week of January.  :o(  Instead of my anticipated 3 weeks off work, I ended up with TEN WEEKS off.  UGH!!!  STILL, despite it all (and I left lots out), if I had to do it all over again, I would.  The surgeons at Mayo were TERRIFIC, treating me like I was their one and only patient, Mom was SO generous to spend 5 weeks here taking care of me and my family, and Mark was absolutely wonderful, practically never leaving my side.  And today, despite this stupid abdominal burn that just doesn't seem to want to give up and some continuing residual neuropathy in my right arm, I am doing TERRIFIC.  I feel great, I'm 100% at work and home and I'm into as much mischief as I have time and money to get into.  :o)

And that's my story.

Every so often, I enjoy updating my blog on how little Erik is doing. Yes, I know I haven't blogged in AGES (though I have a very, very, very long blog post I've worked on about my illness but now I'm thinking I may not post it - I don't know if anyone is interested), but I loooove bragging on my little guy so here it is:

This is what I wrote a year ago about what Erik could and couldn't do when he first came home. I thought I might as well copy it so that memory wouldn't skew the facts:

When we first met him, at age 5:
• He couldn't walk one step without a death grip on both of our hands.
• He grunted a deep grunt, like a growl. He verbalized, but not much.
• He could not feed himself, nor did he want to.
• He drank out of a bottle.
• On one of our first visits, he grabbed a leaf off of a bush and ate it - something he wouldn't do today, and a story we still laugh about because it shocked us so much!
• If you sat him someplace, such as on a blanket on the floor, he would NOT move from that spot. You had to pick him up and place him somewhere else.
• He would not reach for a toy - he loved to LOOK at toys, but no touching or holding. And certainly no playing! He had no idea what toys were or that they were for fun.
• He would happily watch the heavy "snow" on the orphanage TV, even though images weren't very easily seen at all. (Why they even had that on, I have no idea.)
• He was happy to be alone, to sit or lie down and rock, rock, rock.
• He shook with fear with every new situation. For example, we gave him a little toy that played classical music, and though he loved listening to it, he would shake and quiver the whole time.
• He could only eat pureed food, or else it would get stuck going down and he'd scream and cough until he either swallowed it down the rest of the way, or he got it up.
• He had absolutely no clue about anything having to do with ADL's (dressing, bathing, etc.).

This is what he looked like, shortly before we adopted him, at age 4 3/4:
Two and a half years later at 7 1/2, he is THRIVING! He is clearly attached to his home and family and apparently really, really missed me when I was sick and hardly saw him for a couple of weeks. He acted out a LOT and gave my poor family and my mom a really hard time... Then, when I started joining the family at the dinner table again, not even really paying attention to him cause I still felt SO LOUSY, he got so happy and was happy ever since. :o) That did this mom's heart good. Okay--! Here are some bullet points as to how he is doing NOW:

• He still doesn't talk, but there are times when I think, "He's gonna say it...!! He's gonna say it...!!" He gets this look in his eye, but then it doesn't surface. Still waiting...

• He is still signing, though he only has a few more words. HOWEVER, just in the last week or two, he has shown a much greater interest in signing and, when motivated to say something, he learns it almost with only one or two prompts! I.e. the "bus". He simply LOVES the bus (he's all boy!) and likes to "talk about" the bus. I think we are on the verge of seeing lots more signing coming from him. Yay!
• He has this funny little run that he does in his low-tone sort of way - when he's excited (it doesn't take much!) he waggles his arms all crazy and does this "slap foot" sort of run and it is the funniest thing to watch! It makes me chuckle just sitting here writing about it.
  
• He follows directions SO much better than he used to, and LOVES to be a "helper"! He loves to put his dirty clothes in the basket, carry his socks to the table in the morning where I can help put them on, and put his spilled food back onto his plate at dinner. After pottying now, he can often do THREE things without ANY cueing - flush, put the lid down, turn out the light! YAY!
• He has also turned a corner in school - I went up there the other night for a conference and was ASTONISHED at what the teacher told me!! She said he could identify his written name (amongst other names), he could match letters 1 - 10 (even in different size and type!), and was beginning to sight read other words!! Whoo hooooo!!! I was VERY happy to hear this, as these are things we didn't necessarily see at home. He is in a VERY good classroom (albeit without practically ANY technology, which I think he would really respond to...) and has a GREAT teacher and GREAT aides!!
• He still has lots of "stimming" behaviors - pretty much the same ones: staring at his hands, chewing on things, tapping to hear the noise, etc. Oh, well...
• He apparently was having some problems with a bacterial infection awhile back (and probably ever since Ukraine...!) but some simple antibiotics have cleared it up! He hardly EVER "chokes" on his food anymore and he eats all kinds of textures of foods (except lettuce type foods - he doesn't like that). He eats almost ANY KIND OF FOOD you could think to give him, except lettuce or other leafies. He is a GOOOOOOD eater!!!! WOW!
• He's still not too crazy about the dogs, but they love him because he is a good provider of all things delicious.
• When we got him, he weighed 25 pounds if he weighed an ounce, and now he is almost 40 pounds. He's also gotten TALL!! He is still skinny, but nicely filled out. :o) Of course, sometimes his belly looks like he has swallowed a basketball, and it's perfect for poking. ;op
• I love you so much, Erik!!
  

Here is a current photo of him, that I think is particularly cute:

Last week, I figured out how to save 40-50% off my grocery bill - my Wal-Mart grocery bill (the total would be more like 50-60% if I shopped at the "regular" stores)!! The idea has been there all along, but I didn't think about it until last week.

All I do, is I go to our neighboring grocery stores' websites and look for their weekly ad. I go through it, clicking on whatever item they have on sale to add to my "grocery list" that is generated for me automatically. When I'm done, I print the lists. I staple them together. I grab my coupons, and off to Wal-Mart I go!

How it works is, Wal-Mart price matches almost every ad you can find. The other 2 grocery stores offer lots of "Buy one get one free" sales, of course, at much higher original prices than Wal-Mart. I get that item, use a coupon if I have it (boy, is THAT fun when I do!), and voila!!! At check out, I have my list (with items that I got circled to help me find them) and as the checker took each item, I'd tell her what the price or deal was.

Yesterday, my shopping list from a neighboring grocery store offered Uncle Ben's wild rice "BOGO free". I found the bags of rice and they were $3.24 each (ouch). With my BOGO ad from the other store, I got two bags for $3.24, making them each $1.62. Then, to my absolute delight, I noticed that each bag had a coupon stuck to it (you know what I mean) for $1.00 a bag, making each bag only $0.62!!!!

I'm not an "extreme couponer" like seen on TV, because I haven't got 30 hours a week like they do to mess around (plus, in FL, stores don't double coupons), but I have found a very easy way to save 40-50% on my groceries and it only takes 10 min. online to do it, and a little concentration when in the store!

I had so much fun yesterday, that in the canned fruit aisle, two older ladies were debating on what kind of fruit to buy. I told them that P*blix had a BOGO ad for Del Monte canned fruit, and we stood there and I showed them my list and told them how they could this and that free just by mentioning it at the register! Soon enough, a gentleman showed up and we let him in on the deal, and a mom with a little boy chimed in, too! We had a little crowd of "price matchers" in the canned fruit aisle, all conspiring to get a good deal! It was fun!

Anyway, I thought I'd pass on this tip to you! Hope you try it and I hope it helps! :o)

A lot has been going on with me medically and a lot of people are asking a lot of questions, so to avoid having people wonder and to maybe even keep rumors from getting started, here is the skinny on the situation:

I had a slight problem that caused my doctor to order a CT scan. This was interesting, because I am the type of person who is never sick. Nothing ever goes on with me medically. So, with interest, and a bit of amusement, I had the CT. The nurse called after the results were in and said that the doc now wanted an MRI, but didn't tell me why. So, again, with interest and a bit of amusement, I had the MRI (these were done of my abdomen).

The doc called me in. With concern, he told me that it looked like there was a mass on my pancreas. He referred me to a GI doc (which I felt was good, since at least he didn't refer me to an oncologist!!). After a nightmarish week when I was convinced I had pancreatic cancer, the GI doc studied the reports and to my HUGE relief, told me he really didn't think that it was a mass (NOT CANCER!!), but a big aneurysm. He had spoken with a radiologist at the hospital and because I have no history of alcohol or cigarette use, or drugs, or a family history of aneurysms, or pancreatitis, or trauma, they really could not understand why in the world it was there, but it was. They scheduled me for an angiogram. They would thread a catheter tube up (starting at my groin) my artery to the aneurysm (ballooning of the artery) and fix it. Well, they tried. Once they got up there, they realized the job was too complicated for them at that facility and I needed a more sophisticated hospital. It was a real letdown...

So we finally secured an appointment with a vascular surgeon at Mayo Clinic in Jacksonville. I had my scans and reports sent up there beforehand. We met with him and he was as confused as the local guys were as to what was going on. The aneurysm was in a VERY unusual place and was very large. Armed with the knowledge of the first angiogram info, he felt that he could do another one, only more sophisticated one, and approaching the thing from both ends. We scheduled it.

Well, at our pre-op appt, the doc said he'd consulted with several other vascular surgeons and they said that they noticed something: a nearby artery was very narrowed and the artery with the aneurysm was compensating for it, and the pressure caused from the double duty is what caused the ballooning, so simply fixing the aneurysm wouldn't solve the problem - the narrowing would need to be fixed, or another aneurysm would grow. I would need major abdominal surgery to fix the narrowing. Nice.

I called my mom, who is always faithful to help me whenever I need her. She made plans to come to help take care of us for my December 5 surgical date.

At my pre-op appt, we had yet another curve ball thrown at us: the doc again consulted with several other vascular surgeons, and they wanted to do another angiogram for diagnostic purposes: he wanted to zone in totally on the aneurysm and narrowed artery and get a much better look before making any decisions on big surgery. After the images are taken, he will send them to the vascular surgeons at both Rochester and Arizona Mayo clinics so they can all see them and a recommendation can be made.

He said that he is aware of only THREE other documented cases like mine worldwide have been found, which is why they are being so careful and why he is getting so many consults from other surgeons!!! I'm glad that they are trying so hard, but I'm anxious to get this thing fixed... I don't LIKE walking around with a huge aneurysm (plus a smaller one) that could "blow" at any moment!!! I am otherwise very healthy, other than my weight, so that should work in my favor.

But that's what's going on with me. I will next have an angiogram on Dec. 5 and after the doc shows the images taken to the other docs in the other regions, a decision will be made and the recommended procedure will be scheduled pretty soon afterward.

This was a long post, but it's a long story! Thanks to any of you who made it this far! :o)

Now that Erik has been home for over 2 years, we can now say we have "traditions" with him. For example, this is his 3rd October with us, so it is now "tradition" that we visit the Methodist church's pumpkin patch and get pictures of Erik each year. Here he was on the very first October that he was here (he was home for just over a month at this time):

Fast forward to the next year - what progress!! Look! He's sitting by a pumpkin without screaming!! Yay, Erik!! And look - he has HAIR and is smiling!! :oD