Um , i think I messed up the dates on the follow up appointment. We got all the way into LA and discovered my appt wasn't until Thursday. Jo Marie was sweet though and helped me change my dressing and just checked up on me. We will head back on Thursday. Cary and I are both pretty tired, and the drive is a long one, but so worth it. I am so thankful to be in such capable hands I won't complain about the small stuff!

wayyyyy too much excitement...

I just love to hate that old curse, " May you live in interesting times" , with the idea that famine, flood and pestilence are all very interesting. My idea of the perfect wish for someone would be, " May you live a boring life". Quick , somebody wish that for me!!!!

My wound vac (a really cool piece of technology that uses a vacuum to help big wounds heal faster) got a blockage at 2 am on Saturday morning and I spent the rest of the night trying to resolve that. I finally called the home health care nurse at about 5 am, and she said she would send someone out in the AM to change everything, just to turn it off for now. I had dealt with her before and I trusted her. I did what I was told, but the on call nurse for Saturday (I had not had dealings with her before) did not want to come out to help me. She kept insisting that she would just walk us through changing the canister~ when Cary and I both knew just by the process of elimination the canister was not the problem. Both Kim and Donna, the nurses that came out to my home were lovely, but we were both sort of frustrated by Gloria. Being an on call nurse means by definition, covering any problems that arise~ am I too far off base on that one?!  grrrrr....

Anyway, long story short, we were fine just letting it be until Monday  as I had a followup appointment with Dr. Soukiasian, and we knew he would handle this no problem.

Well, then about 10:00 am, I was mid dose giving myself medicine through my feeding tube, when it got unimaginably clogged.  I was next to tears as I had tried to be so @###!!##T&**  careful about flushing it, even going so far as to flush it whenever I took a sip of water. That way I knew I was WAY over the minimum amount of before and after each dose of meds, before and after each feeding and 4 x a day on top of that. This was a bit more serious, so I called the home health care nurse again, and she advised me to go to the local urgent care. We both were not comfortable with that, so we called the on call dr . for Dr Soukiasian, Dr Parker. She told us to come into the ER and in the meantime try to put Diet Coke (of all things) into the tube on the drive up. Apparently it sometimes helps to breakup blockages. Who knew?! 

Well, as we were getting ready to leave, Cary called poor little Haley bug  (she took this weekend to go on a river rafting trip),and bless her heart, she cut the trip short and immediately headed here to watch the boys for us. And she was so sweet and cheerful about it!!! ( people - never wonder why I love these kids so dang much!!!)  Just as we hung up, our home teacher called us and asked what he could do for us (THANK YOU QUINTON for listening to that little voice!!!!!).  He and his sweet family watched the boys until Haley could make it the nearly 4 hours back from Bakersfield.

Long story short, new feeding tube put in,wound vac taken off and wet to dry dressing applied and Cary is now trained how to do that new kind of dressing. I was so proud! He didn't faint or get queezy once!!!  I have to admit, we've both kinda toughened up a bit since all this started... I could be wrong, but I really think we are tough enough now and am really praying for that boring life to start..... any ....second .....now....

Just doing the old recovery dance... Every day a bit stronger and a bit better...

again a short one, recovery is progressing nicely. I am determined to get better as quickly as I can and set daily goals to make sure that happens. Stuff like take all my meds religiously, walk every day , do my breathing exercises, and be anal about keeping wound sites clean. Then I set longer term goals. 

One goal is to take Jonah and the other boys to Legoland. He has wanted to go there since his class visited the aquarium on a field trip. 

Another longer term goal is to get healed so I can go back to work.  A few of you might know that the day my fingerprints and background check went through to start work as a special education aide, was the same day I was told I had cancer. Sweet Judy from the school district has been holding my job for me ever since.

In the hospital, my goal was more simple. Go home to my boys. I had a pic of them as well as Carly, Haley and Aaron in my line of sight in my room. That was my inspiration, especially during the hard parts.

I am a huge believer in goals. Long term, but more importantly short term, daily do-able ones to help me get to the biggies. 

others might be better at doing this with out the goals and that is ok too. I just happen to be one of those that need direction to move forward with purpose, ~ otherwise I might head into lump-ville and that is not an option. I have been given a second shot at life and I have no intention of wasting it.

Completely Minimally Invasive Esophagectomy

Ok , this post is for all those out there that might be researching. When I was trying to find info on this particular operation it was very difficult and I ended up having to piece together what I could find from different websites. The University of Pittsburgh, where  Doctor Soukiasian trained, gave me a good start, but it still had the large incision in the chest. Dr. Soukiasian trained at Cedars-Sinai in minimally invasive thorasic surgery after that,  where , as I understand, he combined the two procedures to create a surgery with only small incisions, the largest being at the neck, but still nowhere near as large as the previous surgeries had called for. The other thing that makes this surgery unique is that Dr Soukiasian does not cut the pyloric valve (as mentioned in previous blogs) . He injects it with botox, which allows a more natural healing process and GREATLY reduces the if not eliminates the "dumping" problem that has so plagued EC patients in the past.

Assisting Dr Soukiasian with the surgery was Dr. Miquel Burch, Dr Soukiasians partner. Assisting with the chest portion, was Dr. Clark Fuller,  and the anesthesiologist was Dr. Karen Sidor. A top notch team I might add. Also on Dr. Soukiasians  team was his fellow, Dr Jacquelynn Parker ( Not sure on spelling and I need to make sure I get her name right for future searches. Will come back to this one) She was amazing, sharp as a tack and just so spot on. His intern's name was Peter Sidor. He was a excellent at what he did, and I ended up feeling bad for him when he kept apologizing for "hurting" me during various owie procedures.There were others, but these are the ones I dealt with the most.

I have too say having made it through the hardest parts, this is NOT an easy operation to recover from and there were times the pain was difficult to control, BUT I am alive. I am getting better every day. The pain will fade. I will live. Unless there had ever been that doubt in your life, the power of that simple statement can easily be overlooked. I sit here, writing this with tears in my eyes, knowing I will see my boys graduate from High School and then college. I will see my grandbabies. And I am so very grateful. Yet all these words seem so pale compared to the feelings behind them. The pain will fade. I will live and I will live well.

short blog today, just one to say I am back and am soo thankful to my sister for the upkeep of this thing when I was in la la land. She and Dad were amazing as well sitting by my bedside, helping me cough, holding my hand through the owies and fluffing pillows so many times per minute I lost track.  Words do not do justice to the gratitude I feel.

I am doing fine at home. I move slowly these days, but am insistent about those walks. My boys are adoreable about it. All 4 take me on my walks. Daniel is tube holder and runner if I need help. Nathan  and Ben are a "danger lookers", and Jonah is water bottle holder. With the exception of Ben, they all take their jobs pretty seriously, and to be fair, Ben is only 5 and roly poly bugs  in the gutter are much more interesting...

more later

My work here is done... Guest Blogger signing out

All I can say about this is that when your hospital room starts to look like a dorm room at the end of finals week, it's time to get your butt home! :oP

And so she did.

Stacey was released from Cedar Sinai and left yesterday afternoon around 3. She is thrilled. Cary is thrilled. Her boys are thrilled. Her dog is thrilled. It's a good thing!

She slept well last night and sounds strong and in control this morning. She will have home healthcare nurses coming in several times a week to check/change dressings, assist with questions, assess her situation, etc. so she's in good hands.

That being said, she’s back in the saddle and my work here is done. From now on, the only posts I’ll add will be pranks (I do know her password). ::Evil Chuckle::

Thanks to all of you for your kind thoughts and prayers.

Guest Blogger - out.

Mostly Technical Today...

Stacey had her first really great day yesterday!  No medical crises, no serious pain spikes, great energy and enough concentration to read for a while.  All in all a fabulous day!

She felt good enough that she asked me to dedicate the contents of this post to information that will be useful to those who are searching for more information about the very new procedure she had done.  Her surgery is new enough that there is not a name for it yet and therefore, finding information is still tough. Though there is more specific information she will list later (names of doctors and relevant staff involved and her opinion of them, more detailed info on specific events, etc.), this post is designed to be first a placeholder to capture the main events and her status throughout and a reminder to her when she is ready to go back and fill in more details.

Stacey has been working on the following list of events for the past couple of days as her energy permitted:

Friday (June 4, 2010)
The surgery was broken into two parts.  The purpose of Part 1 was to mobilize the stomach and verify that her condition would allow the esophogectomy.  Specifically the surgeon:

• Separated the stomach muscles from their connective tissues
• Laproscopically inserted an endoscope (camera) to survey the terrain
• Cauterized the blood vessels around the stomach to minimize bleeding during the main surgery

Afterward, the surgeon reported that all conditions were favorable to proceed with the esophogectomy and the Monday procedure was confirmed.  Stacey reports that she has no memory of pain during the procedure.  She was in a great deal of pain following, though.

Saturday (June 5, 2010)
Stacey was released from the hospital Saturday afternoon and travelled 2 hours to her home.  When asked, the surgeon said he does this because patients tend to have better morale when allowed to go home.  This may generally be true but I'll bet most of his patients don't have 4 little boys and an exuberant dog.   Things did not go well.

Stacey (in her words) "felt like crap!"  The first thing that happened when she walked through the door was her dog, who adores her, jumped right up onto her thoroughly savaged stomach.  Extremely painful!  Once she was settled in a reclining chair (pretty much for the entire weekend!) the pain meds didn't work as they were supposed to and while also running a slight fever all weekend, her pain was poorly managed throughout her home time. 

Sunday (June 6, 2010)
One note you might want to be aware of is to ask the doctor to prescribe plenty of meds!  Because her dose was high, the pharmacist filled an inadequate prescription initially (this was not the hospital pharmacy) and Cary had to call for a refill.  Instead of cooperating, he was told he had to wait until Monday to refill it.  Why? Because their insurance wouldn't pay to have it refilled for another 24 hours.  The cost of the prescription? $13.49!!  Needless to say, Cary insisted on the refill immediately and paid out of pocket.

Monday (June 7, 2010)
Part 2 of the surgery was really the main event.  Stacey and Cary left their house around 2:30am to be at Admitting by 5am.  Stacey wasn't in great shape, needless to say.  Stacey will list names and information about staff to facilitate search engine hits once she is feeling up to it. 

One note: Stacey made it her goal to get out of bed and take a short walk, per doctor's orders, Monday evening.  It was painful and the nurses were stunned but she did it!

Her comments about the day of surgery:

• Woke up and remembers being in lots of pain
• Doesn't have many memories of the day (before or after surgery)
• Barely remembers her time in ICU but recalls that nearly every nurse was great

Tuesday (June 8, 2010)
Tuesday was a rough day.  She was still learning to cough and wound up with something lodged in her throat that she needed to cough up.  She spent over 6.5 hours(!) trying to dislodge whatever was there before she was finally successful.  Very painful and completely exhausting! 

That was typical of the downside. On the upside, Stacey was able to takes walks twice on Tuesday - each time more than doubling her previous distance.  She is very, very determined to get better and go home!

Wednesday (June 9, 2010)
Stacey pushed herself hard and when Dr. Soukiasian came through during early morning rounds about 7am, he pronounced her no longer critical and released her to a regular room.  She was moved around 3pm when a bed opened up for her. 

Wednesday, she successfully began her daily regimen of 3 walks/day.  Once again, the distance on each walk increased, though it was necessary for her to be accompanied by a couple of people for support and tube/cord/IV management and she stopped to rest frequently.  She was also put on nutrition through her feeding tube.

Thursday (June 10, 2010)
Thursday they removed Stacey's A line which monitored her blood pressure and pulse.  A hard day with no particular high or low lights while she continues with her general improvement.

Friday (June 11, 2010)
Not a good day.  Stacey says: "Sucky Day!" 
Early in the morning the nurses began to notice that her heart rate was spiking and hovering around 147-148 bpm.  That isn't unexpected and had happened a few times before.  This time, however, her blood pressure wasn't strong enough to give her the meds that they had been using to control her heart rate.  The blood pressure could not be raised enough to administer the heart meds because it was being depressed by her pain medications.  To that point, she had been given ongoing pain meds and also had a button she could press whenever she needed a boost.  She used it frequently as she was instructed to do.  Eventually, the doctor advised that she would have to lose the pain button and the ongoing pain meds and switch to periodic injections.  Stacey was very apprehensive and her pain levels soared for the rest of the day.  However, it worked and they were finally able to stabilize her BP and administer the heart meds.  As a side note: They removed her feeding tube since it didn't appear to be aiding her recovery and may have been contributing to the problem.
In all of this, the overnight nurse (Francis) noticed that she was smelling something 'off'.  Blood work showed elevated levels of white blood cells and the surgeon, his fellow, his residents, his nurse all spent a good portion of the day figuring out whether it was an infection, a normal side effect of a deflated lung and a lung half filled with gunk (both as a result of the surgery), a leak or if there was something else going on.  They remained alert and working but unalarmed.   But, this led into Saturday...

Saturday (June 12, 2010)
Overnight, doctors decided to perform a CAT scan to see if they could isolate any source of infection or see a leak - both things that might raise her white blood count.  This had been completed by the time I arrived at 3am. 

After reviewing the results and seeing nothing of concern, Dr. S ordered a swallow test.  This involved her swallowing a clear chemical and having x-ray techs capture the actual swallow and tracking the fluid through her new interior architecture.  Dr. S and his cadre of MDs watched what looked like a real time x-ray movie of the liquid going through her throat, her stomach and exiting while discussing how perfectly everything was working.   Unfortunately, it was all very painful for Stacey as she needed to be rolled from side to side to get the views they needed.  With 3 chest tubes (2 located on her right side and 1 on the left), any turning to the side is painful. 

However, the results here didn't offer any real insight into the cause of possible infection.  Dr. S decided that he needed to look at her neck incision again and the drain high inserted below her clavicle.  I was asked to leave the x-ray room while he opened the neck wound.  It's too near the carotid artery to be able to give her anesthesia so she had to undergo this without any numbing effect.  It's pretty hard to see it and not feel aweful for her.  The wound is just under 4" long and about 1" deep.  Very, very painful!  Once she was back in her room, the surgical residents opened the incision where her drain is inserted, though this time they were able to give her drugs before hand so she wasn't in as much pain.  The net result of all of this is that there was a tiny bit of infection at the incision site (think about the tiny bit of pus under a skinned knee scab... ) but they didn't think that was the cause.  The mystery continued. 

That was the morning.  The afternoon was better.  She was able to get enough pain medicine that she finally was able to relax a bit and rest.  She hadn't been very successful in doing so up to this point since the Friday surgery!  The afternoon was spent catching up on meds, respiratory treatments, etc that had been interrupted for all the brouhaha.

One very positive note: Dr. S prescribed 30cc (1 oz) of water by mouth every hour.  He'll be looking at her fluid output based on this change and if everything looks good, she might have her nasal gastric tube (the tube that goes through her nose into her stomach) removed today (Monday) or tomorrow!

Sunday, (June 13, 2010)
This was the first "good" day Stacey has experienced since she went in for surgery last Friday.  The mystery of the elevated white blood count is believed to be solved.  Between small amounts of infection at the wound sites mentioned above and a bowel infection they found, they think they've got this whipped.  The bowel infection is being treated with antibiotics as is the infection caused by the wounds.  She continued to walk and increase her distance, drink her water, reduce her reliance on pain meds (a bit).  She still has quite a lot of pain but she was able, for the first time, to concentrate on something distracting for more than a minute or two.  She spent a couple of hours reading in the afternoon!  She also looked much more relaxed and animated.  Her energy level is getting noticeably better and she is able to talk on the phone for several minutes at a time. 

It was a good day!

Monday, (June 14, 2010)
I'm heading to the hospital now.  As of midnight when I left her, she was settling in for the night and looked as if she would sleep well.  I hope that proved to be the case...

Still doing great... a very short update:

Stacey continues to do phenomenally.  Dr. Soukiasian came by this afternoon and pronounced her "a champ!"  He is so proud of how hard she is working and says that if all goes well, she might be home as early as next Tuesday. 

Today was a physically draining day for Stacey.  As the anesthesia wears off more and and she recovers more she is becoming more aware of her pain and the frustrations of some of her limitations.  So while this is hard for her to deal with and hard for those of us who love her to watch, it's such a good sign of recovery.  It means that she's getting well enough to be bothered by all this.  Again, great news!

She continues to walk, practice her breathing exercises, and follow the doctor's directions religiously and she looks better every time I see her.  Her energy is up a bit and she seems able to sustain it for a bit longer today.  She's also beginning to remember events better. 

Her grit along with your prayers and thoughts are a tough combination - and they're working:

100% Cancer Free!!!

It's official!  The lab results came back yesterday on the lymph nodes removed during surgery on Monday and they are completely clear of cancer.  Stacey does not have cancer! 

As for recovery, she is making remarkable progress.  Dr. Soukiasian came by about 7am Wednesday morning and pronounced her no longer critical.  He released her from ICU barely more than 36 hours from admitting her to ICU.  This is no doubt due to the great job he and his team did but no small measure of this success is owed directly to Stacey's determination to do everything the doctor has asked to letter perfection. 

Right now we are on a "tube- and wire-removal countdown".  Monday she had 8 tubes and numerous wires connected.  She's down to 5 tubes and no permanent wires.  She'll be home before you know it!

~*~*~*~*~*~*~*~*~*~*~*~*~*~

Stacey on her road to recovery...

Hooray and Success... Part 2

So... Part 2 of the surgery took place on Monday.  It was pretty long but Dr. Soukiasian was thrilled with the results.  There are no tumors left! That's one big Hooray.  The procedure itself was pretty much picture perfect according to Dr. S.  That's the other big Hooray.  

Now Stacey's heading into the recovery period.  This part isn't likely to be very much fun for quite some time but she's doing great.  She's being very stubborn about following the doctor's orders perfectly and is directing the nurses to do more when they are inclined to act on their humanitarian instincts and go easy on her.  Yesterday she was up walking twice!  Both times for greater distances than I (or the nurses) thought she would be able to manage.  With a will like that, she'll continue to recover at a remarkable rate.  She's already making very rapid improvements. She  showed a marked improvement yesterday morning over the night before and by the time I left last night, she was in far better shape than yesterday morning. 

I'll keep you posted...

Hooray and Success... Part 1

(NOTE: Guest Blogger on board.  Please be kind and hold your rotten tomatoes until the end of the performance)

So - The good news is that Part 1 of Stacey's surgery is done. 


The Great news is that afterward the surgeon could not say enough good things about how well it went.  Her insides seem to be clean as a whistle and there doesn't appear to be any lingering cancer.  There is one lymph node, quite far removed from any of the pre-existing cancer areas, that was swollen and showed up as positive on the PET scan.  However, the surgeon doesn't seem at all worried as this is the same lymph node that swells and would show positive on a PET scan for any normal person with a cold, the flu or virtually any other basic illness.  In short, 99% sure there are no worries on that score.


She is recovering in the hospital tonight but will be coming home tomorrow to spend the rest of the weekend and then it's back to the hospital bright and early Monday morning for the Main Event.  Part 2 is the actual Esophogectomy (I think I got that right... hmm). 


Good. The serious news is out of the way.  Now for the good stuff.  I told Stacey I'd dish...


First - Stacey would make an excellent drunk!  The anesthesiologist gave her a shot this morning and told her that she'd feel like she'd had a couple of Bloody Marys in no time.  Sure enough, knocked her right into Loopy Land.  Unfortunately, no embarrassing incidents to report - a bit of slurring, a bit of silliness, but that's about it.  Instead, when the surgical nurse came to wheel her away to surgery, she started asking Cary anxiously for her wallet.  She had decided the surgical nurse needed to see her beautiful boys (there is a picture of her boys on the outside of her wallet) and she couldn't relax until the nurse had Stacey's wallet in hand.  The nurse was lovely.  She took the picture into the light where she could see it better, examined the picture carefully and then came back to talk to Stacey about her beautiful family.  Stacey was able to relax and head down the hall to surgery. 


Second - The hospital needs to be careful about their entertainment offerings or thay're never going to get people to leave.  After reading the TV channel lineup, I'm not sure we're going to be able to convince Stacey to come home!  She and I were looking at the published hospital channel line up while waiting for the admittance clerk and have decided that we are uncertain how we will divide our time next week.  We'll have to figure out when to watch the Cardiology Channel and when to change to the Board of Governors' Comedy Channel.  We're pretty sure they will be equally riveting. 


Finally - I'm posting a couple of pre-surgery pics of Stacey for your viewing pleasure. I thought these were fabulous- though I'm not posting the one I took in the waiting area before she was in surgery garb (sans makeup and trying to look annoyed...unsuccessfully).  I'll hold onto that one for blackmail purposes later.


Please continue to keep Stacey, Cary and the boys in your thoughts and prayers.  Her results are remarkable so far - and I have no doubt that you are all contributing to her progress.

 

You know - I don't think this one was taken after the Loopy Juice... It's just Stacey! :D

'Nuff said.

ok, so on my last day before surgery, I ate a cheeseburger for lunch, an omelet for dinner, and a brownie for dessert. Anyone notice there were 3 no-nos in there? bread, meat and chocolate! paying the price,  but it was SO worth it.

I will be out of the loop for awhile, but I have asked my sister to "guest blog" for me. Ohhhh I feel so journalistic or something...

for now, I sign off....

 ...my parting bit of wisdom...

one more favorite quote,

Mom: "Ben, is that your old spiderman suit?"
Ben sighing deeply, "yeah, I really don't want to be the spiderman, but,"  (*deep sigh and looking down*)" the city needs me.".

SOMEBODY doesn't like footballers...

Since tomorrow is my last day as a functioning grown up for some time, I am trying like crazy to get my house in order, clean out the fridge, organize stuff for the kids last weeks of school, get laundry done, you know, all the stuff I know will be fine without me, but I am being too anal to ignore. Life seems to be conspiring against me though.

Yesterday little Nathan missed the bus to his field trip  (long story) , so I ended up taking him down to San Diego to catch up with his class. (read: no chores done that morning). Today,  I was DETERMINED to get that fridge cleaned out before my surgery, so I did it while the kids ate their breakfast. After I came home from taking the kids to school, I found that the dog had gotten into the newly filled trash and spread BBQ ribs all over the carpet in both the family room and living room. (I was mad at my doggy BTW)  It took me an hour and a half to scrub that all clean and I STILL haven't  started on my list. *sigh*

Hey at least I got the fridge clean...