Let us touch the dying, the poor, the lonely and the unwanted
according to the graces we have received and let us not be ashamed or
slow to do the humble work.

- Mother Teresa

About Me

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Sunny Florida, United States
I am the proud mom to 6 kids: Natasha, 24, Nikolai, 20, Reese, 20, Maylee, 14, Erik, 10 and Violet, 7. The kids come from Russia, Ukraine and China; I'm so proud of my family sometimes I think I'll burst and I needed an outlet for it - so I've created this weblog. :o)
If you can't feed a hundred people, then feed just one.
- Mother Teresa

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One of the greatest diseases is to be nobody to anybody.
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Thursday, May 10, 2012
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.

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If you want happiness for an hour, take a nap.
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If you want happiness for a year, inherit a fortune.
If you want happiness for a lifetime, help somebody.
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Whoever welcomes a little child like this in my name welcomes me. Matt. 18:5

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My family

My family
Nikolai, Mark, Missy, Reese, and Erik

Nikolai, 19

Nikolai, 19

Reese, 19

Reese, 19

Erik, 9

Erik, 9

Daisy

Daisy

Mary

Mary

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