Help Sweeten the Deal

I recently was in a fun little shop in Tremonton getting cupcakes.  I had heard that the cupcakes they have there are  fabulous (the salted caramel ones are to die for....chocolate cake and then a whipped caramel flavored icing with caramel drizzled over the top), so of course, I hot-footed it over there to see for myself.  While I was ordering, a friend noticed a book on a nearby table.  It was one of those new-age horoscope type books that go off of your birthday.  Imagine my surprise when I read my day and realized that for better or for worse, it totally nailed the basics of my personality.  It stated that asking for help was very difficult for me and my "mantra" should be "I will always ask for whatever I need".  I HATE having to ask for help in any way, shape or form...so the book was telling the truth. I appreciate so deeply everything that is done in my behalf, but I can't hardly bring myself to ask for it.  So......here I am not only asking for help, but begging for it.
We have been in touch with the Dream Foundation (Dreamfoundation.org) and they are going to help us fulfill Shea's bucket list trip to Hawaii. I am asking everyone to help get the word out.  We have to fund raise a significant portion of this trip.  One of  best ways to help is to donate air miles.  It doesn't matter how many you have to give....even a few add up. It doesn't matter what airline the miles are for...the Foundation can get them to all work in Shea's favor.  We need approximately 240,000 air miles or the equivalent to make this a "go".  If you go to the website, it explains what to do. Look under Donate and a form will pop up with options. Just be sure to put the name Anna Shea Liston in the box where it asks who the donation is for.  Please pass on this information to family, friends, neighbors......anyone who can help me get the word out.  Anyone who knows Shea can tell you that she is a wonderful, delightful and beautiful woman....inside and out.  She is so excited at the possibility of getting to Hawaii....it has been fun to watch her spirits begin to lift and a big smile come back to her face.  We have already been recipients of gifts of such love and magnitude, that this whole experience for us is like the icing on the cake....but it is a very special and important part of the cake for Shea.  Her very own Salted Caramel, if you will.....

It's All Good

Shea recently had new scans done at Huntsman, and when they call and want your family to come meet with the team to discuss them the following day; you know the news is not going to be good.  The cancer has spread to other areas of her body and has gotten larger where it already was.  I was crying all the way home from work, and I could tell that Kelton was pretty rattled, as well.  Shea seemed to be taking it all in stride, which is what Shea does....but I know she just hides her fears and sadness, so that Kelt and I won't see it.  She has always been like that...not wanting to burden anyone or cause more hassle than she deems necessary. After the initial shock, we were able to think about the next steps....then we went home and got late-night spray tans....but that is a whole different story.  On Monday, she will go back to FU-5, Avastin and some other new-fangled concoction that the FDA has just approved....it should be interesting to learn the name of this new crappola coming our way.  Because of the placement of new lesions, Shea is in a lot of fairly constant pain.  She is my hero when I realize just how much she does and pushes "through".  We have talked as a family, and decided that we are going to fulfill a "bucket list" trip for Shea.  As we talked with her team of doctors, they felt like mid-October would be a perfect time for her to go.  It gives them time to get her stabilized on the new treatment so that she can be as pain free and comfortable as possible, without waiting so long that she would go and be unable to have fun and participate, or perhaps not have health sufficient to be able to go at all.   Please send prayers our way that we can make this happen.  She is such an amazing young woman and so deserves a fun and as care-free as possible time to just live and love and laugh.  That is truly our goal.  She is so supportive of everyone else in our family....we are excited to try to help support her in some small way.  Yesterday, she worked so hard to help Jenessa have a wonderful Peach Queen competition experience.  She was busy working on Jenessa's make-up and hair.  I knew her back was killing her, but she didn't want to stop until it was finished.  What an amazing job she did....anyone who saw it would agree that Jenessa was stunning....so Shea really outdid herself in creating the "perfect look".  Jenessa won Miss Congeniality (we are all soooo proud), so afterwards, Hammer Photography was grabbing a few family photos.  I looked to my left, and all I could see was three gorgeous daughters....beautiful inside and out.  I looked to my left and there was Nick and Kelt....my two homeboys .....and emotions just bubbled up.  There they all were smiling for the camera....and I was bawling and trying to smile, too.  I'm sure I looked positively 'postal' or something along those lines....but I just couldn't stop.  I can't believe how very lucky and blessed I am to have these amazing people in my life.  I was missing my other kids....and thinking of them....and realizing that no matter how far away they are....I just love them so much.  I just know I'm really not ready for Shea to "move on"....and I have told her so.  She assures me that she is not ready to go either, so we are going to continue to fight the good fight.  As usual, Shea will be doing all the hard work while I sit on my butt and watch (fairly typical of me, if you believe anything my siblings say), but at least we will be together.....because that's what it is all about....knowing that you are with people you love who have your back.....and you have theirs....and knowing that no matter what comes....love will never change....so it's all good.

Catch-Up

Okay....I know that it has been forever since I have posted anything new.  I am beginning to think that the Blog gods are against me.  At the first of May, my computer was hacked/had a virus/you name it....it happened.  Now, it is still "toe up". As I read through my last blog, I realized that a lot of things have come and gone, but so many things seem to remain the same.  I did get a pink wig to wear around town, and holy smokes that was controversial!  It was a serious lesson in sociology for me. It has been my experience that people DO treat you differently depending on hair color, but pink is a conversation starter, for sure. I learned a lot about people and their thoughts and I can pretty much put them into categories.  What follows is a total generalization....when I talk about a certain group, I don't mean everyone was like that, but the majority certainly was.  I learned that women/girls love pink hair.  Little girls think you are an automatic celebrity/super hero if your hair is pink.  Old ladies really love it (maybe they are tired of blue being the color of choice for mature women)  and all the women in between think it is okay (this is with the exception of my mother, mother-in-law and some female relatives who did not like it)  Apparently, if you are related to the person with pink hair, the "cool" factor goes way, way down.  Young boys are fascinated with it, men from 16-approximately 30 thinks it's hot, 30+ are indifferent after the first look, and old men hate it.  When I say they hate it, I mean they HATE it!  They become very vocal and obnoxiously rude about it, which on one level bugged me, but on another, cracked me up.  I now have a sedate brunette/red wig and I find it to be rather boring, but apparently more socially acceptable.  Since Shea's hair is growing back, I am also letting my hair grow, so in addition to the wig, I have a boys hair cut.  I had to laugh because a few weeks ago, Shea was lamenting the "look" and she told me, "I hate it .  I looked in the mirror and I look like Brandon".  I laughed and said, "Yeah, I looked in the mirror and I look like Grandpa Walt."  We had a good laugh.....if only it weren't so very, very true.  I look totally 'butch'....another hard adjustment to make.  Nick told me I look like a mean Marine.  I told him I am a mean Marine....but it sure made me sad to realize that I was more feminine looking in boot camp....oh well, just experiencing a different kind of boot camp...and this too, shall pass.  Shea has been on the new regimen for a while now, and it has been decided that it isn't being as effective as we had hoped.  The study was pulled last week and we are waiting to do additional scans on the 4th to determine which direction we are going to go next.  So much of this is truly in God's hands.  We talk about what we are maybe supposed to learn...and we admit we have learned a bunch....I just don't think we realized just how long and draining it can be. Shea went last week and found some wonderful books called Smash books (look them up, they really are fun).  They are a cross between a scrapbook/diary/photo album.   She plans on being busy with those, and she wants to plan on learning how to crochet some simple things, as well.  She is doing everything to help keep her spirits up.  I am so, so proud of her!  I has been a difficult couple of weeks for Shea.  One of the people who has encouraged her and cheered for her passed away from cancer this last week.  It was hard to watch all of the wind go out of Shea's sails.  He was such a wonderful example to her and was always such a loving and caring friend, that it was gut and heart wrenching.  She is beginning to move forward, but it is obviously very difficult.  We are kind of in a limbo state until we know the next moves to make, but we are very sure that Heavenly Father has a plan....even thought we really don't know what that plan is.  We continue to feel your love and support and prayers.  Thank you for all that you do for us....we feel your love.

Havin' a Bad Hair Day

Three weeks ago, at her chemo session, Shea announced to her doctors that she wanted to change things up a bit. She has been going for chemo every other week, but truthfully, only has a couple of days every other week that she feels good. We have often talked about the fact that lying in bed all day is really not a real life, and she finally got fed up enough about it to try to make a change. I was down at the U of U, talking to my own doctor at the time, or I probably would have hyper-ventilated, but once everything was explained to me, I became okay with her decision. Basically it goes like this......no more 5 FU, since she would have to have it every couple of weeks. This was also the chemical that she brought home in the chemo ball. Since she is off 5 FU, she is able to extend her chemo sessions to every three weeks instead of every two. She will also increase the dose of Irinatican (do NOT look it up, since I know I totally butchered the spelling of it....but it sounds like Irene A. Teacan....awesome name, huh?) Anyway, we have now gone through the first round of the new system and we have learned a few things. #1. Shea gets way, way more sick the first few days of this plan. Apparently, Irene can really kick your butt. #2. It does seem that once we get Irene under control, Shea does have a few more days that she can run around, see friends, and just be "normal". #3. Shea does have better color in her face and seems to look much healthier by changing this up. #4 Irene wants all of Shea's hair.....and this can only be termed "A Real Pisser" (I am sorry Bishop, but that is an exact description that begins to encapsulate the feelings behind the thought......and I am a Marine, so I didn't have a more appropriate word for it). Anyway, Shea is losing a lot of hair, and this seems to me to be a huge indignity in a long, long line of inhumane indignities that need to be endured. Sooooo......we are going wig hunting, and when it is time to rock the Sinead O'Connor look....we are both going to rock it.....because no woman should ever have to go this one alone. And I can tell you....this one is hard!! Those of you who know me know I have never cared two hoots for my hair, but Shea has always made sure that her hair has been styled, cut and colored to perfection.....and the thought of taking mine off is leaving a huge pit in the bottom of my stomach....so I can't even begin to imagine what my Shea-Shea is going through....can I just say that cancer really sucks? If there is hair loss involved, why can't cancer take the underarm and leg hair....not to mention a bikini line, or in my case, the beard and mustache.....but no......it just likes the hair on your head. Go figure....so, in the next few weeks, we will have new head gear....I'm thinking of something pink like cotton candy....but Shea will probably want me to be a little more "normal".....whatever that means. So if you are out and about.....look for cute hats and headgear.....but no scarves!! I absolutely refuse to look like the overweight, trailer park babushka that I know a scarf will create (hey....I do own a mirror...and yes I've put one on....and yes.....I DID look like and overweight trailer park babushka....not that there is anything wrong with being overweight....or living in a trailer park....or being a babushka, but it is just a bit overwhelming for me to confront the world as all three.....just sayin') Thanks for all your prayers, love and concern....we really do appreciate it....and for the most part....we are all doing fine and we have many more moments of happiness than sad...and that makes any bad hair day a good one :)

Playing Catch-Up

Okay....so can I say that I was totally blown away when I realized that I have not posted a blog for a very, very, very long time? Seriously, I thought it had only been a month, at the very least, and it is almost triple that amount!! Wow...can't imagine how that happened since most of my days have a long, lazy, last forever kind of feel to them. So much has happened....and yet so much remains the same. And please excuse the ramblings...I truly am not very coherent....you'd think I hadn't got any rest or something....LOL. In the past several weeks, Shea has continued to have chemotherapy. We have switched main oncology teams because the communication between us was crazy, crazy ( we will take a lion share of the blame, since trying to communicate an idea to the Liston's without us talking over, under and around you is quite the feat). Anyway, long story short.....out with the one and in with the new. So far so good, but I have learned to not count my chickens before they hatch because with cancer....your chicken eggs just might really be lizard or snake eggs, so it is best to take it a day at a time. I have had several people tell me that they wished I wrote more, but honestly, you can only whine so much before you get sick of hearing it, so I felt that you and I were better off taking a break (a separation of a sorts) and can I say a big Thank You to everyone who was not deterred and kept right on keeping on in my face....you are appreciated more than you will ever know. I was reading an article talking about the latest research that shows that women who have strong support systems live the longest...if that is the case, I will probably live to be over a 100 years old....so thanks! Back to Shea.....In the midst of all the chaos and yahoo, she had another stent placed in her colon. Her CT/PET scan had shown some areas of the colon appeared to be inflamed and swollen. They couldn't figure out if it was an infection or not, so the plan was to do a colonoscopy (which when you spell check offers up kalidescope, which is way better than a colonoscopy any day of the week, but cracks me up because if I were texting, you would wonder why I am talking about children's toys all of a sudden because that dang predictive text screws me over every single time), possibly take some samples and move on. It was mentioned in passing, that is necessary, a stent would be placed. Well.....apparently they felt it was necessary, because Shea exited with new hardware. All of that was fine until last weekend. Shea woke up Saturday morning at 4 in severe pain. She knew it was my day off, so she didn't want to wake me up, but at 9 a.m., Kelt came to tell me that when he was getting ready for work, Shea had told him that she knew her stent had migrated and was causing her pain. I immediately went downstairs and she told me she was calling Huntsman. When she got through, she was able to speak with the on-duty Oncologist (who had better pray very, very hard that they remain nameless to me....sorry Bishop....a new one by the way.....but I am in the mood to provide a verbal smack-down) anyway....this professional told Shea that she would just need to go to her closest emergency room and get help or wait until Monday and then go to the clinic. She kept telling Shea that the clinics were all closed over and over again, while Shea was trying to clarify a few things. You know it was pretty bad when Shea finally snapped and essentially said "I'm not stupid...you can stop telling me that the clinics are closed. I just need to have you listen to me for a little bit"....but that really didn't happen, so in short order Shea was bundled up in the car for a ride to the emergency room. now I know that there are fabulous people who work at the Brigham Hospital, but the last time we were there for labs they acted like they didn't have a clue about accessing a port or anything else regarding a patient with cancer paraphernalia, so that left Ogden or Logan. A friend just had a family member get a horrible staph infection in Ogden....so off to Logan we go. When we got there, the staff were exceptional. They had given Shea some pain killers and were discussing how to move forward, when we mentioned that Shea had recent blood work done the Wednesday before, so if they wanted to contact Huntsman, they could probably have that info faxed to them. The Doctor came back and said that he actually had found out that the doctor who had placed Shea's stent was the Gastroenterologist on call at the U of U Hospital ( close affiliate to Huntsman), and he had expressed a desire to take care of the issue for Shea. He wanted her to get to Salt Lake, have a CT scan and then go into a procedure to remove the stent. We were given the option of transporting her by ambulance down, or we could wait until her oxygen levels were normal enough to travel (they had dropped due to the medication they had given her) We decided to wait, so it wasn't until noon that we were on the road for Salt Lake and I was given the admonition to monitor her breathing while I drove (now there is an experience.....you have to keep the person awake...no sleeping for them, but they can't talk or else it drops, as well....so basically it is me in the car with diarrhea of the mouth and Shea patiently listening to my blabber....yuck!) We arrived at the U at 3:00 and at 3:14 we were escorted to room 17. At 5:30 she was finally given the dye to drink (after we had reminded the staff that we were scheduled for a CT) and we were told that the turn-around from dye to done was 3 hours. Shea was in increasing pain but she kept telling herself to hang on until 8 or 9 and it would all be okay. We kept talking to the ER staff, whose hands were tied because we were waiting on Doctor On-call. One of the doctors made the comment to Shea about if she was sure the stent had moved and Shea said " Yes...I haven't been eating alot of chicken wire lately....maybe spoons, but not any forks, so I'm pretty sure it is the stent". The look on his face was priceless, and we had to chuckle about that. Imagine or surprise and dismay when we were called and told at 9:30 that the procedure would take place at some unspecified time the following day. Actually, it wasn't surprise and dismay.....it was more like I had a nuclear explosion and Shea cried....a lot!! I was pacing in her room while I argued with a doctor on the phone for 45 minutes using words like reprehensible....irresponsible health care....bordering immoral....we are the ones bent over the barrel...etc. etc.....when all I really wanted to say was *&%$#*&#$@#%$^!!!!! but I didn't, because emergency room security was eye-balling me from the corridor and it wasn't necessarily his butt I wanted to kick!! When I was done arguing/negotiating/threatening/planning someone's pre-mature demise, Shea asked to talk to her on the phone. She was crying quite hard at this point, since it was too painful for her to even lie down in bed and she just told the doctor.."Please help me....I don't care who helps me....just find me someone....I trust you to care about me and take care of me". I was so proud of her....that was the best guilt trip ever....almost like she had learned from a master LOL. We had a call back and were told that the doctor and a surgical team were on their way...she would go into surgery at 11:30 at night. Pretty soon, the technician arrived with a whole bunch of equipment and room number 17 was transformed. Two doctors later, and we were ready to rock and roll. They allowed me to stay up by Shea's head and hold her hand since I was penned in by the equipment. As they began to administer the anesthesia, Shea's blood pressure kept dropping. We had to keep her right on the fringe of being awake, but relaxed enough to get the job done. It was scary for me because at one point, she was at 47/38....not exactly the kind of blood pressure you want to see. They were monitoring it every 2 minutes, so if she could tolerate more, they could give her more. Because she was only slightly under, she was feeling a lot of pain and she kept mumbling to me "Mom....tell them I take extended release...tell them I take extended release" which refrences the pain killer that she takes at home. When they were able to view the stent, they realized that it had failed to deploy on one side and so instead of being able to do it's job, these metal barbs were like claws tearing her up on the inside. Everytime, the doctor tried to remove it...no matter which way he turned it, it just would dig in deeper or grab another place....(imagine one of those Chinese hand-cuff toys...the ones you put on your fingers and they pull tight....only made out of metal....really horrific to watch). Finally, the technician was directed to get another surgeon on the phone so he could consult/google for ideas (In case I am in the end-of -the-world scenario, I hope google is available, because apparently you really CAN google everything and anything). He was busy typing (you could hear the keys click-clacking) when he said that he had worked with a few other stents that had been stuck and he had removed them by inverting them and turning them inside out. Viola! That is all it took, and it was out! Shea's body immediately collapsed and the nurse and I thought for a split second that she had died....but the blood pressure monitor proved us wrong. She was just so exhausted from all that pain, that once her body was free, she could finally rest. By 2:00 a.m. we were shown to our room in the observation area ( which happened to be the psych room...sink covered up, two cameras to make sure we were okay, door lock on the outside, etc.), I made a run to the all night Starbucks for orange juice and croissants (yes, there is one in the lobby of the hospital....amazing, huh!) and by 3:00 we were asleep. At 4 we were awakened by the glaring lights (remember the psych room?) because someone had accidentally hit the light switch out in the hall, but after I waddled out and turned it off, we were able to sleep until 6, which is the time that all nurses, doctors, technicians, custodial workers, phlebotomists etc. know is the time that no patient must be allowed to sleep later than...and if you have spent more than a day in a hospital, you know this is true ( I believe that if we allowed the sick to actually sleep....they might get better quicker....but no one asked me and no one cares.....and my Dad would just say I was lazy to want to sleep past 6, so there you are....) We cat-napped until 11:00, at which point we decided we had better get home, so we could actually sleep. Shea is doing well, but is tired after her ordeal, and we have vowed NO MORE STENTS!!!! (unless it is a matter of life or death....but even then, we will talk) I know all of this probably will embarrass Shea for you to know, but there it is. Like Shea says...colon cancer isn't glamorous like breast cancer...no cute T-shirts, no cute ribbons etc.....no one wears things that say "I like butts" or " check your "A"....although when we were talking about it at work and I was telling my co-workers this I had said "No one says 'get rid of your a@@'", and a coworker said "Ummm, I think that's called divorce." I laughed so hard....and it is probably one of those things that you just had to be there...but thank goodness for humor, otherwise I would be a permanent resident in psych/observation...which really is okay, since it is 50 feet from a Starbucks....so there you are.....life at the Liston's.....and now you are all caught up...love to all :)