I am TERRIBLE about writing now, just because I am out enjoying life. I feel great these days and think it is stupendous that feeling good has become the norm!  I am still doing the feeding tube thing, but I am able to eat soft foods now. No meats, yeast breads, fresh veggies or anything crunchy, but the world feels like there is a multitude of possibilities out there. I am just having a blast figuring it all out.

I do still feel a bit like I am in the twilight zone still though, because I am counting calories to keep them UP. How weird is that?! I will most likely need to work with a nutritionist to get all the way there, but that feeding tube thing and its days of tyranny are coming to an end (oooo I feel like such an anarchist!).

POWER TO THE PEOPLE!!!! um... I mean BIRDIES!!!

In all honesty, I still struggle with that lactose intolerance thing but with lact-aid, lactose free milk,  and lactose free nutrition drinks (and yes I  found some of those) I am learning how to deal. Just know if you ever go somewhere with me and I bolt for the bathroom, I am trying to spare all of us some major unpleasantness...

yeeeaaaaahh....best if I leave this one sans caption...

These days, I have been fully keeping up on my laundry and housework (holy crap I AM an alien!!!!), doing all the kids homework and therapies, taking the dog on daily walks and playing fetch with him at the local dog park, shaved and bathed him, made chocolate chip cookies to put in the freezer so I can warm them up when the kids get home from school and even made shaved ice for the kids when they were feeling bad about not having "snow days" in Southern California AND I have made dinner every night of the week (except once when I asked Cary to do it, just cause I knew he would and I was feeling lazy).

Life is good.

Jo Marie (remember she is the surgeons nurse practitioner) showed me her psychic side once again today and called me about 20 minutes before I had time set aside to call her! It really is almost freaky how she does that. Anyway, we talked about getting my 6 month PET scan set up. Can you believe it has been 6 months since the surgery?! I know, it blows my mind too!

Anyway, after the PET scan, I will go in to see Dr Soukiasian again and hopefully we will discuss a plan to get said evil feeding tube out. Ok so maybe it isn't EVIL per say, and it has kept me alive just fine. It isn't painful (except when I rip stitches, but then that is kinda my own fault),  it just slows me down  (...pooooor maligned feeding tube) . I am just so anxious to get the silly thing gone so I can take Jonah to Legoland for his birthday. If it isn't gone by February (oh. Dear. Lord. forbid that) I am gonna take him anyway.

First off, another balloon party dilation happened yesterday.

When I was there in prep, I was trying to decide if knowing the nurses so well that I was asking :

.....about Danielle's pregnant daughter, or why Achilles wasn't at work today, or if Michelle wouldn't mind if we called Ron from the IV team this time cause my veins were being mean to me today, or if Mike was finished with his traveling nurse assignment, or where Mariella gets her hair clips 'cause they always match her scrubs.......

was this a good thing or a bad thing?   hmmmm...

Anywhoo, Dr. Lo got ye ol' stomophagus to 14 millimeters. The magic number we are shooting for is 15, so we are almost there. The tissue had grown back to a point it was before the last dilation, so he was pretty aggressive this time, actually removing scar tissue and injecting me with steroids so the tissue wouldn't grow back as fast. He really is an amazing doctor.  I also got a new medication to basically "shellac" the lining to help it heal faster and smooth it out a bit. I am so very happy that after 2 days of a clear liquid diet, I get to finally have some real food. Well, soft foods like mashed taters, canned fruit or veggies, etc. Still no salad, but we are getting there. I am thankful for that.  I am also thankful Nathan said "Mom I am really kinda sick of pizza.".

The kids have been eating that pretty solid for the past year with Cary doing the single dad thing and all. Poor hubby reached the "sick of it" stage back around last April. To his credit he stuck to it...and stuck to it pretty darn well I might add. This has been a hard year on him. On all of us really, but we emerged from the other side a with a few more gray hairs (OK a lot more gray hairs, but that is what L'Oreal is for...), but we DID emerge.

I know I have been belly aching a lot these past few blogs, but I really do have so much to be grateful for. I just need to take the time to understand that.

In fact, for the last past 5 months Cary and I have been trying our darnest to figure out a thank you gift for Dr. Soukiasian. "Thanks for saving my life, here's some golf balls." just doesn't seem to cut it.  We have searched high and low, even asking his nurse for suggestions to his interests. We are still at square one.

How can ANYTHING convey to him  that I am here because of his skill and Gods grace?  I get to see my children grow, play fetch with the dog and throw water balloons. I get to hold my babies when they cry and comfort them when they are scared. I get to watch them wrestle and giggle at their antics.

I get to fly kites with them.











How do you even begin to say thank you for that? Somehow even a nice fruit basket seems a bit trite.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Looks like I will be going in to have my feeding tube stitched back in today. I MAY even have an upper GI done ( a barium swallow) but Dr Soukiasian said it is too early to have a dilation done. Too dangerous he said. We will wait about a month for that one.

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.

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.

what the surgeon said

 I was just too tired to write sooner and the kids were all were fighting the flu. Now it is Hubbys turn. He is on the bed behind me totally miserable.


But as to the details of the surgery, it will be broken up into 2 parts.

Part 1 will be on June 4th. Check in will be at 5 am. with me having nothing to eat from midnight. surgery will start at around 7 ish and end at around noonish.  During this part Dr Soukiasian will do an endoscope to peek around on the inside of my esophagus. He will also do a laproscopic staging to physically see exactly the stage of cancer.  Then, if all goes well, he said he will remove some blood vessels around the stomach to prepare it for Monday. He will also place the feeding tube.  I will go home on Saturday hopefully around  noon or 1:00. A home health care nurse will follow up that weekend to make sure we are taking care of the feeding tube. and that all is going well.

Part 2 will be on the 7th. Again, check in will be @ 5am with surgery starting at around 7:00 ish. Insisions will be in my abdomen, right side and neck.  I will have my esophagus removed laproscopically, the stomach cut lengthwise and fitted as a tube, and finally stitched into place as my new esophagus. I will have drains and tubes in quite a few places and hubby will not be able to see me until 2 or 3 that afternoon.

here is a break down of what will happen and HOPEFULLY when:

*1-2 days in ICU
*up and walking within 24 to 48 hours
*feeding tube starts again on day 1
*walking every day
*every hour, must do coughing and breathing exercises
*physiological therapy ( basically a rough back massage to loosen up phlem and gross stuff)
*a swallow study done 5 to 7 days post surgery
 *if no leaks i start to drink fluids the next day
*ideally chest drain tubes would also be removed at that time, but depends on how I am doing.
*I get to have my own pain meds button (woo hoo)
*I will be in the hospital 7 to 10 days
*at home, feeding tube stays in for minimum of 3 months.
*dumping is a small risk, but nowhere near as large as it would have been without the botox being injected into my pyloric valve. (usually doctors just cut it and permanently damage it, but my surgeon injects it with botox to let it heal slowly on its own).I am pretty impressed by that BTW.

He did say that 60 to 80 percent of patients have SOME sort of complications but most of the time they are just nuisances rather that life threatening, especially where he does his incision in the neck instead of the chest.

According to him, for, me, I have about a 20 percent chance of leakage because of the radiation I had done. Radiation destroys blood vessels and causes scar tissue to form. It also inhibits healing. I am not that worried though, because he does his incision in the neck, not the chest. He said that if there is a leak in the neck, its not that big of a deal, drain it and I will be fine. If the insision were in the chest, if there were a leak, it could kill me. Since that is not an option, I really dont mind a big scar on the side of my neck...

The risk of death during this surgery for me will be anywhere from 1 to 4 percent.  Not to bad considering the "high rent district" he will be mucking about in!!!

no updates today, too pooped, but I found something kind of interesting. I have already googled the crap out of anything having to do with my doctor, this surgery, Cedar Sinai, esophageal cancer , you name it. My bookmarks list is about 4 columns thick... But just recently, I was googling videos, I was trying to find a story about one of Dr Soukiasians older patients that beat this monster and was on his way to the Bahamas, when I found this rare gem! I was tickled to see it showed exactly the type of surgery I will be having as well as my doctor in action ( don't worry, nothing too graphic...) .

For right now, I am exhausted. Had my lungs tested today. The trip home today took a lot out of me. Big accident (luckily no serious injuries) on the 91 with a nice Hollywood style explosion and everything ~ made for a LONG drive home.

this is a pic I pulled from the LA times of the after math.

What is it they say, about the best laid plans... I had everything coordinated out perfectly, which kids was going to be picked up by what person and so forth - when 2 of the 3 came down with the flu. We could not in good conscious, ask people to expose themselves and their kids. SO Cary stayed home with all the sick kiddos, and I made the trip to LA alone. I think it was harder on Cary than me!  

ok, as far as the cancer goes, we had a bit of a set back, but it's all good. PET scan showed and "inflamed" lymph node up in my neck. It could be me just fighting an infection- or it could be cancer. Either way, Dr. Soukiasian will be removing it come the 7th anyway. We will find out if it was cancerous  about a week after surgery when the pathology reports come back.

I will post more detail tomorrow about what we talked about, but for now I am just so pooped I think I am very close to falling asleep while sittin........ zzzz......

Well, still no PET scan result, but they must not have been too horrid. I will call on monday if I don't get a call by then.

I did get a call from Dr Soukiasian's ( the surgeon) nurse. I was trying to find out the name of the surgery ( there are different TYPES of  esophagectomies ) and she told me it was kind of a hybrid of different types of Minimally Invasive Laparoscopic  surgery. But the basics will still be the same. Dr Soukiasian will turn my tummy into a tube to function as my new esophagus. Long story short.

I found a site that a daughter is keeping for her dad who just underwent surgery that I found really helpful. I know a lot of you have been asking and asking what we should expect next, and I just stare blankly into space because I have no clue. Bearing in mind that everyone is different, I am posting a link to that site so you can kind of get an idea. I believe he had his surgery all in one day, and I will be having mine split into two, but the idea is the same. Here it is, and I love the title by the way... (Warmest thanks to them for giving me permission to link to my site as well as the wonderful letters of support.)

As far as dates, June 4th is a short day. Exploratory, take a peek around, put in whatever ports or tubes I need, push through tissue that doesn't want to be pushed, that sort of thing. On June 7th, well that will be the big 'un.  I will then be esophagus free from that day on. Well, sort of.

I will be in the hospital 7 to 10 days.

I'm not gonna loose my hair!!!!

Woo HOO, looks like I am not going bald anytime soon. The chemo drugs I will be on are Oxaliplatinim and Xeloda (kinda sounds like fantasy amazon princess' names huh?) The main side effect I will have is nausea! Heck I lived through 4 pregnancies and even threw up on a guy in Fry's Electronic store.  I can DO nausea!

I did not get exact time lines and start dates yet, but I did get more general time frames. I got  PET scan and a consult with the Radiation Therapist on Monday, so it won't be long after that I will be able to start the full chemo and radiation.

The bad news is, I will most likely have to stay up in LA during the week and only come home on the weekends. I will miss my babies something fierce, but if this is what it takes to get better, than so be it. I know they are in good hands with Carly and my husband, I will just miss them more than I can think about right now.

My sister left for Virginia today, it was so nice to have her here. Daniel was feeling anger and frustration and worry (pretty expected and VERY normal) , so she took him for the afternoon one day to just spend some one on one time with him. It really helped him I think.  Nathan is moving slower and gets distracted easier than normal, but again, completely expected. Jonah drew a map for his teacher to "planet X" ( the baseball diamond). The cool part is, he drew it ACCURATELY! :) When there was a turn in the map, he turned! What a smartie! Ben is doing great. All the boys adore Carly, but man, he just melts into her for hugs. It is such a huge comfort to me. I have made sure they all have very strong support systems in place @ school as well, so I can feel confident they will be ok  when I leave. ..... I still will miss them though....

The meetings with the oncologist and the surgeon were very uplifting and  full of promise. The surgeon even said,  "I don't treat cancer, I cure it." Now that is what I like to hear! We are so tickled that I am even being considered for a LAPAROSCOPIC  surgery! He is the only doctor that does this on such late stage tumors. He is also pioneering a new technique that injects my pyloric valve with botox instead of cutting it during this operation. Long story short, that means MANY fewer potential complications after the surgery is over, and a MUCH faster recovery. 


SO , it is on to getting better! 


Before I go, I wanted to recommend this cute little out of the way place I found...

just getting started

First of all , to all those who have the need to make sure they are in the right place, this is Chemistry 101. We will start out by learning that Chemistry is the study of matter. Like physicists, chemists study the fundamental properties of matter and they also explore the interactions between matter and energy.




*snicker*.... I really am evil at heart...




Actually, I am here to help all those who know and love me (blush)  keep up with what is going on as I battle this yucky thing called cancer without calling each and every one of you. Now , don't get me wrong, I would LOVE to visit with each of you and see how everyone was doing , and ask about your kids and and your cats and the job, I really love that kind of stuff. But unfortunately I just can't. (DANG I hate time limitations and lack of energy!....) I will do my best to update this as often as I can, or perhaps even have someone do that for me when I am unable.

Here goes....




In October of 2009, My hubby rushed me to the emergency room when I choked on a mouthful of rice. I never stopped breathing, but I did start throwing up blood. Now, just a hint, if that ever happens, it's NOT a good thing... Lots of tests and 2 months later, I was diagnosed with esophageal cancer . We didn't know the stage yet, so, we went to a Dr Simon Lo with Cedars Sinai. Came back as stage T3 M1 .

Basically what that means is that it has broken through the walls of the esophagus and has entered the lymph nodes. The tumor is too big to operate on right now, but chemo and possibly radiation should shrink that puppy down to size. Once it gets more operable, I will have have the pleasure of having my whole esophagus and the upper portion of my tummy removed... I will spare you the details for now, 'cause it is particularly nasty.

I do have to tell all of you that fasted and prayed for me, I did get the doctors I needed even though the insurance company was being a butt-head about it. (Can I say butt-head on a family blog? Ah well, its MY blog, I can even say "Poop" if I want! .... I'm SUCH a potty mouth).

I do have to give kudos to the staff of Dr. Lo, Dr.Soukiasian AND the medical director of Cedars Sinai! They really went to bat for me and I will be forever grateful for that. The insurance wasn't budging, so by a pure MIRACLE we found a loophole. I am simply changing my primary care physician to one at Cedars!

But I digress. Once I recover from that operation, I will go in for more chemo to get the last traces of this little monster. I understand I will have to learn how to eat again ( fun! ~ sarcasm for those who missed that) , will have a feeding tube for WWWAAAYYY too long, and ...
I WILL NEVER BE ABLE TO EAT CHOCOLATE AGAIN IN MY WHOLE LIFE!!!! :(

*sigh... I suppose I can learn to live with that if it means I get to see my babies grow up.

I aint a' lyin' ~ I got a heck of a road ahead of me, but I am actually more worried about my husband and my sweet children.

For those of you locally, I thank you from the bottom of my heart for all you are doing and all you have offered to do. I am working with Cleo Garcia with the French Valley Ward to coordinate the things like meals, rides to the doctor, taking my kids to or from school, babysitting, and even helping my kids with their homework.

Seriously, my dear and wonderful friends, if you are local, please ~ we will need your time. We are trying to split it up into small blocks so that MOST of the sign ups will only take an hour or so. We DO NOT have definite time frames yet, but as soon as we get them, I will post them and make sure Cleo has them as well so she can start filling in all the time slots. Hey, if it's one thing we Mormons are good at , its getting organized on a big ol' scale.

If you are farther away and just REALLY feel the need to help, my sister has set up a website that will help us with everything from moving expenses (yup we gotta move in April) to the extra co-pays and gas we will use. Again to the local friends, your TIME is much more valuable to us.

For right now, Cary's beautiful oldest daughter, Carly is here staying with us. She has been SUCH a God send. She will have to leave the end of March to join her husband in New York, but until then , I am just so happy/grateful/appreciative to have her help (bit of an understatement I might add...).

So that's the story. Now I just want to share a bit of wisdom with all of you...




Please try to remember that now...