Last couple of days have been extremely boring, (thank you for all those wishes of boring-ness) with the exception of one little earthquake... It was only a 5.4 and the epicenter was a good 30 or 40 miles away, but it was enough to spark bedtime discussion with small boys. It was also pretty funny that little Ben could not WAIT until dad got home from work to tell him all about it and how " shaky shaky" it was. We are all  fine and dandy, but it did make me think that as soon as I get feeling a bit better, I need to get my emergency preparedness kit up to speed. Right now with all the craziness, I have no idea even where our poor ravaged, picked through kits even are! (looks like I still need those boring days to continue into the long distant future...)

 Here at the new house I kept smelling something really bad up in our bedroom. Well, I finally tracked it down...  Remember what a wonderful Easter my boys had? well, as you may remember the move happened right after that and the Easter stuff got all packed up and shipped off to the new house. Except that some of the Easter baskets still had boiled eggs in them. Yum....

Ok I have a very dear and beautiful friend from Virginia who gave me the BEST idea.

Remember how I was lamenting about how yucky it is to not be able to wash my hair? OK if I didn't on the blog, I sure did in person...   I can't get in the shower because of the drains and tubes still in me and I can't bend over the sink or tub because it is just too excruciating. The hospital has a shower cap thingy that does a "dry wash) but since I wasn't able to rinse, after about a day or so, my hair felt sticky and grungier (is that a word?) than before.

I have another sweet friend who came and picked me up once I got home from the hospital, took me over to her home where she has an in home hair salon, and washed my hair for me. It had been over two weeks and I started to bawl it felt so good. To top it off she also cut and styled it for me and I felt very loved and very spoiled. I will be forever grateful for that act of kindness.

I can't do that all the time though so my hair is once again taking on a smelly life of its own. Well, my sweet friend from Virginia has had many health issues ever since she was a young girl (she was sledding and crashed into a tree, paralyzing her from the waist down ). She has worked hard to overcome so much and I admire her no end, but unfortunately she has had to spend a lot of time in the hospital. She is amazing though and is even sweeter and more loving than she was before the accident ~ and that was pretty hard to do let me tell you!!! She has the most amazingly beautiful long hair, and her friends came up with a way to help her keep it clean.I saw a pic of it on her facebook page and thought it was magnificent! 

She put her head over the side of the bed letting her friends support her neck. Then her friends placed a small clean plastic trash can directly under her head. They washed her hair using the trash can to catch the water and soap. I bet a towel under the can would make sure there were no big messes to clean as well.

I think it is brilliant and if you ever want to give a service to someone who has been hospital bound for so long, this is one any one can do, AND it will be appreciated so much more than you can even imagine.

Haven't posted in a while, just out of pure laziness I guess.
Lets see to catch up...
*I got my feeding tube clogged again, but thank heaven Cary got it unstuck by brute force. I couldn't have done it, I am a big wuss! ...

* Got permission from the doctor to put that blasted Nexium (the culprit in the clogging capers) into applesauce and eating it instead of putting it in through the feeding tube. (all pills had been being crushed, mixed with water and shot it directly into my intestines (ewww... BTW).


*finished up all my antibiotics so all I am on now is the aforementioned evil Nexium, a med to help keep my heart rate down ( Lopressor) and my pain meds (which I am trying to go without for longer and longer periods of time. So far, haven't been too successful at that, but working on it).

* Aunt Maralee took the kids to Sea World and they LOVED IT. Thank you so much Aunt Maralee and all the cousins who made it so fun for them. Jonah couldn't quit telling me about the walrus with HUGE teeth ~ but it was ok because he was nice...And Ben was MOST impressed with the sword he got as a souvenir. He showed me all his "secret moves"...


*Oh and the final pathology report came back. All my margins (the area around where the tumor was removed) are completely clear. I am COMPLETELY cancer free ~ officially.

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