Ambiguity

Ambiguity....What Happens in Vagueness, stays in Vagueness (thanks, Mental Floss) perfectly describes what I have been feeling about the Huntsman for the last several weeks. I have struggled with the feeling that I wasn't getting any answers or information. But, as my Grandma Mary used to tell me..."Be careful what you wish for....you just might get it" (and for all the grammar gestapo's out there....I know you shouldn't start a sentence with but or an and ....but I did, and I don't care ...so there). Kelt went with Shea on Wednesday to start her new round of chemo. When they met with the team, they told Kelt that everything looked good and was positive (or so he says they said...which I'm sure they did, but it is kind of just a song and dance to distract us....think the snake song 'Trust in Me' in the movie Jungle Book). They then started the chemo. This go-around is going to be brutal. Kelt said that the new drug wasn't in her system very long before she began to throw up. It has been several days since, and I would still say that she is showing the effects (she might tell you otherwise, but she doesn't want you to think that she can't handle this). While they were there, Kelt had them print out the report from her latest PT/CT scan. It shows that the liver embolization did make a minor change in the size of the tumor, but that it did not stop it from staying metabolically active. From what I could gather, it doesn't seem as if this procedure would be worth doing again at this point. We will have to see what the doctors have to say the next time she goes for treatment. The cancer in her lungs has expanded in size and number, which is a big concern. I am planning on going to Huntsman for the next session.....Kelt and Shea are way too nice to hold someone's feet to the fire, but I am not that nice of a human being. I don't have any problem roasting them over a fire, as I am done with all of the vague, nothingness that I think we have been given lately. Truth be told....I would love to be an ostrich and bury my head in the sand and pretend like nothing dramatic is taking place in our lives, but I can't.....it's Shea Shea's life I'm talking about....and I can't do anything to fix whats going on...but I CAN try to understand it. That being said.....Shea loves hearing about your words of love and encouragement....I know she appreciates each and everything, big and small, that is done/given in her behalf. I find myself so full of gratitude for all my blessings, that I get teary-eyed, and then I start to cry and the cycle goes round and round. It really drives me crazy in a way because I have been a scrapper all my life. When I was in first grade, I wasn't intimidated by the 6th grade bully....I took him on and won. I have pushed and shoved and fought a good portion of my life and felt like I was at least holding my own.....but I am afraid that I might not be able to win this one. And truthfully.....that just plain pisses me off (sorry Bishop....you can take the girl out of the Marines, but you can't take the Marine out of the girl). It is hard to describe the thoughts and feelings that I have on a daily basis. Sometimes I feel like my head is about 30 pounds too heavy and the knot in my stomach never goes away (don't worry....I can easily eat around that knot...in fact, I am a stress eater, so I am not hurting in the "add the fat" area). I know people don't believe me when I say that I am fine, but for the most part, I am. But......if I think about the negative, I'll just stay in bed all day and that won't do anyone any good. So....I keep focusing on the positive....and here it is. Shea does not have cancer in her brain, her sinuses, her eyes, her spleen, her bones or in her urinary system (I'm sure there are other places in the clear, but I can't remember them off the top of my head). Shea is receiving care at one of the top hospitals in the world (even though I have been taking their name in vain for the last few weeks). Shea has friends and family who love and support her (and the family also has friends and family who support them ). We are together...we have a house.....more food than I need....jobs, school and opportunities....blessings galore.....and none of that is vague or imaginary. All tangible.....and/but I like that!

Hello....is anyone still out there?

It has been quite a long time since I decided to make a post. I was looking at the blog date, and it tells me that for approximately two months, I have tried to live in total oblivion and pretend that my life was simply filled with the good old chaos that existed prior to cancer entering our lives. It is very difficult to maneuver through all the yadda-yadda that seems to come with the territory. Shea had her procedure and we were waiting patiently to hear all about the results... Well, here's a news flash.....we STILL don't know. I kid you not.....not a word. Other than "it wasn't quite as successful as we had hoped.". Really? That's all you've got? As my father-in-law used to say...."I can kick a pig in the butt and get more out of it than that!" I am translating this to mean that the news sucks, and so no one wants to deliver it ( killing of the messenger and all that jazz). Kelt thinks that this means that the news is good, and so they don't feel like they need to tell us. It will probably take another year before they say anything, so I would tell you that I will let you know when I know....but I probably won't know. Just number 676 of the things that are beginning to annoy me about this cancer cruise. We were told that the chemo treatments that Shea has been having stopped being effective about a month ago, so they gave her a break for a couple of weeks and we will start with a new concoction of chemo drugs this Wednesday the 30th. I am not looking forward to the change, since this drug causes extreme nausea and vomiting.....not exactly on my list, or Shea's list, of things to do for a good time. Another side effect is the loss of hair, so we are holding our breath and praying that , in Shea's case, that won't happen. I had promised Shea way back when this started, that if she lost her hair, I would lose mine too....so I am planning a kick-butt wig wardrobe.....just in case. I'm thinking something along the lines of a Nicki Minage, a Lady Godiva and a black, punk rock do.....kind of like something Pink would wear to a bar fight. What I (and especially Kelt, who knows I can be quite frightening) am praying for is that I never have to worry about it because Shea won't lose her hair...done deal. Speaking of hair...... Shea is looking really sassy and sexy and is rocking a new look. Her boyfriends Mom treated her to a salon session in Park City over Thanksgiving break, and she looks good! I think when she feels good, she should spend her time walking a few runways! It has been nice to have her able to spend so much time with friends and family. It is fun for me to see her all dressed up instead of in bed in pajamas (although she has always looked really good while she does that.....many people can't believe that she is so sick when they see her. In fact, she was telling me that she is tired of the dirty looks she gets when she is riding in a wheelchair.....especially when she stands up to stretch her legs. It makes me catch how many times in a day I would make snap judgements and decisions about people without ever really having the facts. If anything good can be said about cancer, it is the fact that it teaches you many things about yourself that you otherwise would never know or understand. I think I am becoming kinder and more mellow (my family will tell you otherwise, but don't say anything to me.....I want to be as delusional as possible, thank you very much.). So the upshot of the long silence is this......no new knowledge as pertains to the liver procedure. It wasn't as successful as they had hoped, so jury is still out on the re-do option; we will be starting a new chemotherapy beginning on the 30th; the family is hanging in there, but feeling somewhat like cancer hostages; we really do feel grateful for all of the tender mercies and beautiful moments that our Heavenly Father generously gives us, and I am officially addicted to Coke, which makes me a liquid coke addict. We need intervention......most certainly, divine.

Just a Little "Whine"

Shea had her scheduled procedure on her liver. As she was getting ready to go see Dr. Eugene (or Dr. Whoa, as one of his receptionists call him...and no, I still don't know what his name really is), a nurse came into the room we were in and asked Shea to disrobe, and put on only the hospital gown. Normally, this would be expected, but the room we were in had about 12 feet of open windows on one side and 6 feet of windows on the other. No curtains, etc......just windows. Shea and I laughed and she said, "Oh well, I've never undressed for all of Salt Lake before.....I hope they are ready for this". We figured that the windows were tinted in such a way that no one could see in, but it had to have been weird to get all naked when you can see people in the restaurant across the way.....cancer really 'treats' you to all kinds of things and situations you never thought you would be in. Oh well, after a few pokes, and a bunch of preliminary drugs, she was off to the big dance. Kelt and I waited for several hours in the waiting room since it ended up taking over 4 hours to complete the procedure. As Shea was brought to us, we noticed that she was very groggy and just not feeling real well. As time progressed, her pain level began to spike. The nurses were doing everything they could to try to help her, but nothing was working. Several times a nurse would stand on one side of her bed and I would be on the other side, trying to massage her back muscles so that they wouldn't keep cramping up. It didn't help that she had to lie flat for five hours, so she couldn't even adjust her legs or anything to try to alleviate the pain. When Dr. Eugene came in to check on her, he was shocked to see the level of pain that she was experiencing. He felt like it had something to do with the fact that she was on the operating table so long, combined with the forced lying flat. Her back muscles and stomach muscles just kept rippling and cramping. He began to throw whatever pain medication and muscle relaxers he could at her, but her body would just absorb it. He was amazed that 8 mg of morphine only showed any effect for less than 30 minutes. Her muscles sometimes made it look as if she were bouncing on the bed, while lying flat. Overall, it really was one of the most brutal things I have ever seen. It was horrible to stand there and just look and feel helpless. I have not been able to post this blog for so long, because the memory of that pain and helplessness has just been more than I could bring myself to revisit. And the lovely thing about all of it, is the fact that we may have to do it all over again. I so appreciated her boyfriend for being there for so much of it with us. He is so tender and loving and giving....it was more than amazing, and I am so very grateful that he is in her life. At one point, the pain was so great and her stomach was cramping so much, that Shea had to throw-up. I happened to be watching his face, and he didn't even look fazed by any of it (I, on the other hand, probably had a look of total horror on mine). Right after the nurse wiped her mouth, he went in for a kiss. Shea gasped out an "I just threw-up!", and he just brushed some hair behind her ear and said, "I don't care". For that, he can rob a bank....kick a cat...I don't care......he is definitely one of my heroes. Kelt was the other one. I would have fallen apart through all of the nightmare, but he stayed calm and steady....just what I needed to avoid a total freak-out. The pain lasted until the next morning, which meant that she really didn't get any rest or relief until the next day. Dr. Eugene said that they have a leader board at Huntsman of who has required the most medication during a surgery or a procedure, and Shea just toppled the leader right off the list. What a lousy thing to 'win'. It took her a couple of days before she was ready to come home, which was a very good thing, since her bedroom wasn't quite ready. Finally, when she could come home, I knew her bed had arrived and all was going to be fine. I had seen the room before I headed to Huntsman to pick her and Kelt up, but I couldn't help but gasp when I saw it with her when we arrived home. It was absolutely gorgeous and amazing!! And....it just keeps getting better and better as last minute things like curtains and blinds start coming in. I can't believe what was accomplished in so little time. So many people donated several days and hours to make a dream room for Shea. Once again....words really don't suffice....so all I can say is a heartfelt "Thank You".....and I can let you know that I still kind of 'tear up' every time I go in to her room. It truly is beautiful. Shea had chemo this past Wednesday on the 5th. Since her birthday was on the 4th, I was glad that it came after, so that she could get out with friends and enjoy herself. No one should have to be worrying about cancer when they are turning 24....but Shea had to....which can I just say as politely as possible.....totally freakin' sucks!!! (sorry once again Bishop, but believe me.....I did 'edit' and use the 'filter' button) So I was happy when she assured me that she had a great day. She was tired, but happy. When she went for chemo, she was told that we will meet again with Dr. Eugene...time and date TBA...we only know the where and that is at the Huntsman. At that time, we will know if this procedure was 'successful' or not and whether or not we are going to give it a go again. So.....I will post and let everyone know when I know....but I am not holding my breath, since it seems like it may be a couple of weeks out...or not....who knows. I just know that if I am only now able to type about it, I am not too sure I can go through it again. Which is really stupid, since I did nothing the first go around. I just know that I am sure that before I came to this world, I knew I was going to have this experience....but that was before I realized that I am not super-woman and that sometimes life just is crappier than I had formerly realized. I don't feel like I was lied to in the pre-existence.....I was just too stupid to read the fine print....and I am not as strong and evil as I would like to think that I am. I really think I would rather face down a mugger than see Dr. Eugene again....but no one is asking me. And I feel really lousy when I think of what Shea must be thinking and feeling....so I will stop my whining and complaining (well, some of it anyway)...and I will continue to remind Heavenly Father that my name really isn't Job.....and I think I do have a breaking point....and then I will get a coke and some McDonalds fries and remind him to just keep hanging on to us....and not to let go....and I will try to settle down and not kick and fuss so much. I will strive to feel what I felt over conference (Thank You Father! ) and realize that this too shall pass( and just because it feels like an over-sized peach pit, it will pass all the same)....and we will once again pull though...because the Liston's are tough and ornery and stubborn.....and sometimes that is all you need.

The Secret

Okay....I know it has a been a long, dry spell of no information shared through the blog, but I am not going to provide any excuses...I have enjoyed every moment away. Just kidding. In fact, the reason that I have not blogged until now is because I am a mean and ornery person who couldn't think of a single positive thing to share. Not one. And even though I had several people beg, plead and threaten me to write some more, I absolutely refused. Because, I really wasn't in that great of a frame of mind. Talk about a yo-yo of emotions! If I wasn't already menopausal, I'd think I was going through menopause (sorry to all the men reading this....I'm sure your eyes are burning and the words 'too much information' are war-chanting through your brains). Anyway, I think I'm coming out from the dark side...it has taken a lot of coke, candy and tears, but I'm starting to feel a bit of a groove again. Shea had met with a team of doctors to discuss 'options'. When Huntsman called, they said she would be meeting with a Dr. Lowe. I said, "Dr. Lowe as in L-O-W-E?" and the nurse confirmed that I was correct. When Shea and Kelt got to the Huntsman, imagine their surprise when they were told that a Dr. Lowe did not exist. Turns out, the physician is from somewhere in the orient, no one knows how to spell or pronounce his name (I still don't know who the sam-hill he is, or what his name really is) and he answers to the name of Eugene. Does that crack anyone else up? Eugene? Really? Wouldn't Bob be better? or Blade? But Shea's new team doctor is Eugene. It was decided that the best thing to do next is surgery on her liver. Rather than go in and start cutting, we have opted for a less invasive form of surgery. Essentially they will go through the groin and place little balls coated in chemo into the liver. The balls will then migrate/or be placed in such a way as to cut off the blood supply to the largest tumor in the liver. If all goes well, we will repeat the procedure a couple of weeks later. It is a fairly easy operation, so to speak, but the problems involved for Shea are two-fold. The first problem is the fact that she has to be awake the entire time. She can't even be semi-asleep. This operation takes 3-6 hours, so that is a long time to try to not psych yourself out. Eugene was kind enough to also tell us that the liver spasms to try to get rid of the little balls, so it is excruciatingly painful afterward. She will have to stay at the Huntsman until the pain is under control. I hope that part does not take too long. We have known for a couple of weeks that surgery was pending, and Huntsman told us they would let us know exactly when. Well, they just told us at around noon today, and surgery is tomorrow. In the morning...at 9. Thank goodness Kelt and I have such fabulous bosses or we would be in trouble. Shea put it very well..."Sometimes they act like...'Well, you have cancer. It isn't as if you are doing anything else other than lying around. We'll get to you when we get to you'" So now we are in super-pack and plan mode. On the upside to all of this....Thanks to a wonderful, insightful friend and at team of other super-wonderful friends, Shea has been given a fun activity to look forward to. A friend has organized a complete bedroom make-over, including a new comfy, adjustable bed. So while Shea is in the hospital, this team will be moving in and redoing the hovel that she has been consigned to. And when I say hovel, I mean hovel. The wallpaper in this room dates from the 30's ....it is oh so attractive. The lighting is a stupid bulb. We have been meaning to address the issue, but just didn't have the time or energy, so I am so grateful to everyone involved. Malt-O-Meal donated $850.00 which went toward the bed, and several other individuals have participated, as well. So once again, I am struggling for words adequate enough to say Thank You. Because sometimes, Thank You just doesn't cut it. For me, it isn't about the bed, or the paint or the ceiling fan/light...it is about Shea smiling and being excited and not focusing on this stupid operation that we have to do. That has meant the world. Someone asked me today what helps the most, and I would have to say...anything that puts some "happy" into her life. That's the secret. Speaking of the secret....that is a book another friend has given me to read. She was telling me today that everything that I put out into the world will come back to me.....kind of like wicked karma/universe garbage/mother's curse....you get the idea. So to all those people that I have wanted to punch lately (you don't know who you are, but I am positive it isn't anyone reading this) or to the one I want to run over (you know who you are...you might be reading this)...I am saying I forgive you....I am moving forward and hopefully upward....I am determined to be happy....and we are going to get through the next week smoothly and without any extra stress or pain. Coke and candy and tears will help....and that's my secret.

Procrastination Takes Coordination

Okay....so here I am, adding another post. Mainly to quell the rumours that I have fallen off the face of the earth (sorry to disappoint some of you..heehee). And can I just say that part of the reason why I have waited so long to post is the fact that this stupid I-Pad truly drives me crazy. already it has wanted to change rumours to dimples , heehee to hedged and quell to quack. It gets rather irritating to change those things back a few times just because the computer is much, much smarter than me....so that drives me crazy. That being said, that is only partially the reason why I have waited so long to blog again. The real reason is because I have enjoyed pretending to be "normal"for the last several weeks. See, in my other "normal" life, I hate to write. I mean really, really, really hate it. I procrastinated every writing assignment from junior high on through grad school....waiting until the last bitter moment for my 'muse' to kick in ( I learned that my 'muse' is basically Nacho Cheese Doritos chased by some Coke or Dr. Pepper depending on which decade we are talking about). So basically, I would rather have a homemade bikini wax (now there's a story......) than write. It was very surreal for Shea and I to go through a few days of notoriety leading up to the benefit. We were on an amazing radio show...the Freak Show, no less....and yes, the irony was not lost on me. Basically, because when you ares a member of the CCC, you spend a fair amount of your life feeling somewhat like a freak. So we really appreciated the fact that these guys made "freak" look good....and I mean really good. And nice....as in really, really nice. Shea and I were both ready to vomit with nerves when we pulled into the parking lot, but after being assured not to worry since "no one ever listens to this radio station anyway", we settled down....Shea in front of a mic and me on a back bench far, far away from a mic which is a good thing, since I like to talk as much as I hate to write. If I could figure out how to talk all day and get paid for it, I would......oh, wait.....I already did hahaha. So after a wonderful time on the air, we traveled home and prepared for the big benefit night. That is when we realized that it wasn't nerves that Shea was suffering from, but some good old-fashioned tummy upset. She felt so badly about not being able to attend the benefit for the entire time, but she was glad to be able to see some things and participate in the program. I know that it meant so much to her to be able to look out over the crowd and see so many people who care about her and support her. It was a wonderful lift to her spirits. I had to keep wiggling my toes and looking up at the ceiling to avoid bawling like a stupid baby all night. It was beyond words incredible. I will never be able to pay back or pay it forward.....the hours and dedication in our behalf was so huge. It was so fantastic, we had so many people tell us that they had never witnessed something so amazing in Brigham City.......so from my heart to all of yours....many thanks! Unfortunately, Shea had a very bad few days following the benefit. It is much harder for her to bounce back from any activity that she is able to participate in. She goes for another infusion on the 15th and then will run through the series of in-depth scans on the 22nd. We will meet with her doctor and oncology team on the 29th to hear about the promised "options", so we are getting anxious to hear what they are going to say/suggest. The other day I was in Pleasant Grove visiting some friends. I had a few minute before I needed to leave for Salt Lake, so I attended their city 'Promenade'...a kind of a craft show/farmer's market/get together. When I was there, I saw a lady advertising that she could "read faces". Needless to say, I was intrigued. I have always been curious about all of that hocus-locus kind of stuff, and I thought for five bucks...what the heck. I was walking up to lay down the money and fully expecting to hear "Oh.....your face is saying 'dang, I sure am old!' and 'do you think you could maybe moisturize once in a while?'" when a lady in a track suit shoved on by me. Soooo, no reading of the face......and here is the dumb thing. It keeps bugging me. You would think that I would dwell on the credit crisis (no, not mine....the governments. Although Kelt wishes I would dwell on mine a little bit more LOL) , or the fact that school is about to begin or on Shea's cancer....but, no! I have to continually think about that stupid face reading (and yes Bishop....I know what you are going to tell me and you are absolutely right of course), but there it is. It is almost as if I think she can look at my face and say to me, "Hold on for just two/ten/twenty-four more oaths and all of this Huntsman crap will be over". I just do better when I have a deadline looming. I like them, they make me comfortable. If I had a deadline, I could eat Doritos and guzzle Coke right up to the end and right before it was through.....BAM....I could stand up, do the cancer thing, turn it back over to God and then wait for the final grade......just like the papers back in school. Because I am brilliant when it comes to procrastination....that I can do. And I oh so want to procrastinated everything that cancer and the Huntsman stand for, because the hardest thing right now is to just keep keeping on. My feet hurt, and I'm tired of playing the game. And the thing that hurts the worst is watching the toll that this takes on Shea. It is really driving me crazy....just like the Face Reader. Anyone want to go for a drive to Pleasant Grove anytime soon? Doritos and Coke required.

Short and Sweet

Shea had another round of chemo yesterday. We think that they finally have the right doses of everything since this seems to be going much smoother. She even felt good enough to eat a baked potato during her infusion. You should have seen the horrified look on a couple of doctor's faces when I put an entire stick of butter on it, followed up with a bunch of cheese and sour cream. I think they were waiting for me to have a stroke right there on the spot. I left them speechless when I smiled and said, "Hey, it takes a lot of work and sacrifice to keep a figure like mine". I could tell one was dying to say "Do you own a mirror?" hahaha. Shea even made the comment that in the past she would have worried about the calories, so it is fun that they are telling her to eat more of the 'bad' stuff. They sent us into the back, private room with the bed for this infusion, so that meant that I was privileged enough to take a nap on the killer loveseat. I am gearing up to begin sewing a few voodoo dolls....a project apparently long overdue:). This week we are going to sit down as a family and see if we can squeeze a little bit of Summer into our plans. I've been so busy, I haven't been able to read or even think thoughts hahaha, so today will be a very short post....Shea wants Mac and Cheese and I am just the one to get it for her...

Homeless

I have to start out with a BIG Thank You to everyone who helped us "travel" a little bit away from ourselves. It was fun to read your posts and think about where we would like to vacation, when given a chance. Life has started to feel like it has a "normal" flow to it lately. Days moving along....dishes in the sink....children bickering......ahhhhh! Just like the good old days LOL! Since my life has started to fall into a manageable routine, I started to read a few books. Anyone who knows me really well, knows that I like to read three or four books at a time. It stretches the really good ones out so that they aren't over in a flash, and it helps be get through the informational ones without getting bored.....it is just how my ADHD works hahaha. In the midst of all of this reading, Shea has been doing some living. She has had some good visits with some great friends and she has been able to do a few things with them. Last night I thought I would have a stroke watching Shea and Bella (our little pest of a black cock-a-poo dog that I adore even though she drives me crazy) run around the house chasing each other. It was so unexpected ....Shea just burst from her room and the games began...what fun! Everything continues to go well for Shea, and we are grateful for every moment we get to spend together. She told me the other day that she has always loved the things I have to say...I seriously wondered if the morphine levels were too high, 'cuz that was way funny to me! I had to remind her of high school and all the eyeball rolls she gave me. Friday will be our countdown for three more chemo sessions before being presented with the options. I am excited, but also scared....the known evil is easier to handle than the unknown one...but I am excited to hear what the team of doctors will say. Now that I have rambled a bit, I will get back to the topic of today...So I have read or am reading a wonderfully eclectic line-up......"50 Things Your Colo-Rectal Surgeon May Not Tell You", "Cold Sassy Tree", "Chocolat", "Health and Healing", "The Seduction of Water", "Driving With Dead People" and "Same Kind of Different As Me " (since I haven't had the opportunity to read much lately, I am acting like an addict left alone in the marijuana field....wallowing in my addiction and loving every minute of it.....at least that is what I imagine an addict in a marijuana field would do, as I can't speak from personal experience...although I did see an entire village getting their groove on once in Mexico while the police burned about a ten acre field of marijuana....and they looked just as happy as I have felt while reading....in my pajamas....all day....you get the idea) and when I haven't been reading, I have been listening to a CD of quotes by Mister Rogers....so now you know how close I am to falling off the deep end. It turns out Mr. Rogers was a pretty smart guy, and I get a kick out of the fact that he was a hard-chargin' vet who wore that sweater to cover up all of the tattoos that he got while serving his country....and who knew that he had a lot of smart things to tell children (and adults) on how to get along in this world. I have to admit that as a child, I was somewhat bored by Mr. Rogers....I was more an Electric Company kind of girl, but as an adult...I can really admire what he did with his life. So there I was listening to Mr. Rogers one day and he said something that explains, in part, some feelings that people who are struggling ( or who have struggled) with cancer feel. He said " What has been important in my understanding of myself and others is the fact that each one of us is so much more than any one thing. a sick child is much more than his or her sickness, a person with a disability is much, much more than their handicap, a pediatrician is more than a medical doctor. You're much more than your job description, or your age, or your income or your output.". Sha and I had just been discussing how she is now and forever....Shea with cancer; and that is hard, when she longs to just be Shea...undefined by the disease that grips her. We have a friend who shared with us that even after five years of being cancer-free, she is still being defined by it. Sometimes in our struggle to move through this life as quickly and painlessly as we can, we define ourselves and others according to our own past or present circumstances. I know I do it all the time.....determining who and what people are, based on what I can see or experience when I am around them. That is why reading "The Same Kind of Different As Me" really hit home for me. For some reason, when I went to get a book from the bookstore, I was drawn to this one. As I began reading, I was intrigued by the story.....and then I was floored to read about a diagnosis of colon cancer that had spread to the liver....and the strength and faith of the people involved. So I want to share some of the ideas that I read ....words of wisdom from a man who was homeless for decades......"There's somethin' I learned when I was homeless. Our limitation is God's opportunity. When you get all the way to the end of your rope and there ain't nothin you can do, that's when God takes over.". And each day that goes by shows me the truth of that statement more and more.....we are all here on earth doing the best we can to make it through whatever stands in our way, and at some point we all reach the end of our ropes, but that is when God takes over. Sometimes it is in a sunrise or a sunset, or in a smile, or a good night's sleep, or in a book you pick up and unexpectedly gain a stronger testimony from. I have been so worried about all the earthly things....health, wealth, happiness, etc ( how to get them, how to keep them, what to do with them when I have them, what to do with them when I don't) that I have lost sight of the fact that I need to get out of God's way, trust him and totally let go. And that is exactly what Peter did when he was walking on the water....trusting God and letting go. And that is what I started out on this journey doing, but somewhere in the middle of life, I forgot to live and see life. So I am grateful to a sweet, homeless man in Texas who taught me more than words or feelings will ever express, and I will end with paraphrasing his final words in the book....."I used to spend a lot of time worrying that I was different from other people, even from other homeless folks....But I found out everybody's different-the same kind of different as me. We're all just regular folks walkin down the road God done set in front of us. The truth about it is, whether we is rich or poor or something in between, this earth ain't no final restin place. So in a way, we is all homeless-just workin our way toward home." So I am learning to trust God and let go on my journey home and hopefully, God will take my limitations and create His opportunities with them. I think that would make the journey worthwhile.....

Armchair Travelers

We just got back from the Huntsman. Chemo day was switched this week to Saturday since Shea needed to undergo a little procedure Friday morning. It seems that the tumor in the colon that was almost obstructing the bowel has shrunk enough that the stent that was placed there had slipped off and migrated down, so it needed to be removed. Her colo-rectal surgeon feels like it does not need to be replaced at this time, so that is also good news. Saturdays at the Huntsman are much more relaxed than on the weekdays. I think if the word got out, most patients would have chemo on a Saturday....it is so quiet and relaxing. The nurse today told me that if we come again on a Saturday, I could sleep in one of the beds while Shea received treatment. Awesome! Either I looked really tired/old and haggard/sick or all of the above, for her to suggest such a thing, but hey....I am so going to take her up on it if I ever get the chance :). they have reduced the amount of chemo that Shea will receive each time, and it seems to really be helping. She is talking about enrolling in a "nail" class this fall. She is beginning to feel like she can maybe start driving and getting out a little bit more. It is nice to see her start feeling better and begin to make plans for the future. She slept through most of today's treatment, so on the way home we had Chick-Fil-A (really good fast food, but it doesn't compare to a steak as an after chemo treat haha). After writing about being "normal", it seems as if the good Lord is granting that wish (maybe I had better write about the desire to be rich and skinny and see if that gets me anywhere LOL). I am enjoying the feeling of normalcy that we have been able to start to feel over the last couple of days....gives me hope and a spring in my step. The only thing missing is a little bit of travel...or a camping trip or two. That is the stuff that is hard to do when you are starting out on the cancer road. Shea and I were talking about how exciting it is that we have over 80 followers reading the blog (she thinks it is cool that so many people care about her....I just feel sorry that I am torturing so many people on a fairly regular basis), and we know that many more are reading it that have not become followers. Soooooo..........we are curious about where the readers are coming from. We know several in Utah, but does anyone want to post and tell us about your exciting surroundings? We are not able to travel...which we love to do....so this will give us a chance to see the world through your eyes. You can keep it anonymous, just tell us what you see.....fun things to do/eat/etc. We look forward to reading the comments.....you could say it is what we live for. So how about helping out a couple of armchair travelers? We hope it will be fun for everyone involved!

Dog-Gone Options

It has been a long and crazy several days since I was able to last post. My computer has died, so I have put off blogging since I find it tedious and boring to do it with the I-PAD. Last week was a lot of fun....five days of Miss Utah events. Caroline did such a good job, it was great to watch her perform at the Capitol Theater. Shea was able to attend all of the nights and support her sister. It was wonderful to spend the family time together. We went as a family to Huntsman on Monday to begin the process for genetic testing. They promised me that we will know where everybody stands in the next three weeks....but since I've heard that one before, I am mildly skeptical that we will truly know within that time frame. We shall see LOL. On Wednesday, Shea met with her new team of doctors...her former physician has since moved to Oregon to set up practice there. They wanted to share with us all of the results of the tests that Shea took last Friday. They told us that there is a 21.62% reduction in the tumors in the liver and that the CEA markers are at 34. We are so thrilled with the news. Her doctor said that we will plan on four more chemo sessions and then we will be able to sit down and discuss options. Isn't that great? Options! This is the first time anyone has suggested that we have options. Since this battle with cancer began, we have just been trying to stay afloat, getting washed with the tide. I have had several people say to me "I don't know how you do it. I wouldn't be able to handle it". I try to remind them that no one asked me if I could handle it either....in an instant, it just became my reality. I was reading a book the other day and in it a young woman was talking about her diagnosis with cancer. She said she didn't tell anyone for a day or two, because once she shared the news, she knew she would never go back to where she once was. She would always be the one who had cancer and people would always look at her differently. I feel bad that Shea never had that opportunity to pretend to be normal for even a day or two. One of the hardest things for her to handle is when people look at her with pity and concern. She knows it is because they care, but it is still hard to be reminded that you are not 'normal'. I try to remind her that no one in her family is 'normal', and that brings a smile....yet, I can see what she means. It reminds me of a story my Mom tells about when she was on her mission. She was walking up and down some steep streets in Chile with her companion. It was cold and she was wearing a big coat. She told me that she and her companion passed a large, barking dog. It wasn't long after that she felt a tug on her coat. She swiped her hand behind her, but didn't feel anything, so she continued to walk. She thought she was getting old and tired since the climb up the streets seemed to get more difficult. They stopped and talked to several people, and it wasn't until they were ready to go into someone's house to talk that a person pointed out that she had a dog attached to her bottom. The barking dog had bit her on the butt and had refused to let go. She had walked up and down countless streets with a dog attached to her backside, and no one had bothered to say a thing. Maybe they didn't know what to say.....maybe they thought she knew.....maybe the whole situation seemed so absurd, they didn't want to bring it to her attention. Anyway, cancer is like that dog....it comes up, bites you on the butt, and then no one knows what to say or what not to say....me included. It is crazy, but true. And I feel like I have been dragging it around for way too long, but that dang thing just won't let go. It didn't ask if it was okay to latch on to my life....it just did. And the interesting thing for me is to listen to the "why's"of all of this happening...especially since Shea is so young. "it is God's will"...."it is her punishment for one of her action's"....."She is carrying the physical manifestation of the past mistakes of her ancestors"....and the crazy list goes on and on. I prefer to believe that it is what it is.....cancer....and it can come into any of our lives at any given time while we are walking nonchalantly up the street and bite us on the butt. So I am happy to have options. Options mean that there is more than one way to try to skin this cat (or dog, as the case may be). It means that we can make real decisions about what we think is best, instead of blindly treading water....hoping for a rescue. We still don't know if there will be a physical rescue, but we do know that there is a spiritual one....and we know that is the time that we will say "this is God's will"....but until then, we are going to savor the sweet news that in a few short weeks, we will have options. Hopefully, the 'dog' will let go of our butts and we can stop dragging it around. It would be nice to be 'normal' for awhile.

Gratitude

I have tried to post two different times in the past week, and each time I have hit the post button, my comments have disappeared into cyber space or were eaten by the computer or just simply disappeared. So I have been thinking a lot about trials and daily frustrations...since I want to throw my computer out the window and watch it smash on the ground (am I the only one that thinks it would be cool to see?). I have been wondering how to get through this crazy thing we call life in the smoothest, most comfortable and happy way possible. And I am positive that for me it involves a bunch of Coke (the kind you drink hehehe) and a good novel or two (feel free to insert your favorite vice or vices of choice....chocolate, TV, back rubs...you get the idea). Most of all, it involves good old-fashioned gratitude. Not the kind of gratitude that involves being grateful that you have a Coke and that you learned to read, or the kind that makes me proud to be an American, but the kind that makes me grateful that my family is involved in the struggles against cancer. Sounds crazy doesn't it? But in so many ways, I AM grateful for this challenge. Don't get me wrong, it isn't fun and enjoyable....and I would prefer other things to be the "problem"so to speak, but I am grateful. Shea had a really tough week this past week. She is tired of hurting and struggling, and it had begun to take it's toll. She has worked so hard at being kind, pleasant and forgiving, that when it wasn't returned in a couple of situations, she got a bit blue (which made good, old, calm and peaceful Mom want to go what the Army pilots call "blue balls"....you know one blew here and one blew there....sorry Bishop, it isn't my term....it just describes something I felt like doing haha). So anyway, there we were on Friday, driving to the Huntsman and Shea began expressing just how hard this whole situation is, and how tired of it she is, and how it would just be nice to be 23 without all the baggage that comes with colon cancer. And there I was driving and thinking "Yea...my life sucks! I am tired! I don't want to have to take Shea down here and do all of this stuff!". So there we were whining and complaining to each other and in a silly way it kind of felt good. Like two war veterans complaining about the food and the rations.....we were heading to the front lines together, and even though we knew the Commander had a battle plan...we had some other people we felt like should have been on the list instead of us. As you go for an infusion day, lab work is first. On this particular day, as we entered in reluctant and grumpy mode, we turned the corner and against the far wall was a young man without a lower part of his face. His nose, cheekbones and jaw had been sacrificed in his personal battle with cancer. As I tried to not react to this site, Shea looked up at me with tears in her eyes and said "it can always get worse, can't it Mom?". And we both agreed that sometimes a wise, kind Heavenly Father just has to slap you up the side of the head....hard. All that complaining, only to realize that I am grateful for my life. I don't like Sheas struggle with cancer, but I know it could be worse. This battle has brought us closer as only two people in the same foxhole could understand. I would trade my life for hers if I could, but she continually tells me she is glad it is her and not me going through it, because she wouldn't want to stand to the side and watch me get chemotherapy. So there you are....gratitude. Gratitude for what you have. Gratitude for what you don't. Gratitude for the easy....and the hard. Gratitude that the Commander in all of this was smart enough to give me a road map in the scriptures and a walkie talkie called prayer....without them, the front lines would be unbearable. And after all the moaning and groaning, chemotherapy went very smooth and very well. Shea has never felt this good going home, and she seems to be stronger this go around. Next Friday we will do all of the scans and then they will tell us how the chemotherapy is affecting the tumors. We are hoping for....and expecting all good news. So fingers and toes all crossed......and prayers constantly coming please. I know my walkie talkie is in full use.....

Perspective

We are finally home, and there is nothing better than your own bed to make the day seem better. It changes your perspective on life. And it's crazy how much of all of this boils down to perspective. Shea and I were discussing on the way home how hard it is to have cancer in our lives, but then we were able to talk about all of the ways we have changed for the better. For example....we know that on infusion days, having the private room with the bed is best. It doesn't matter to us that we have since learned that is where they put the prisoners when they come in for treatments (that way they can handcuff them to the bed and the poor person guarding them can take their turn on the folding chair/pseudo love seat...which is a punishment of its very own kind). So....private room and comfy bed during infusion=best case scenario for the day. When we were spending our week at Camp Huntsman, we also noticed that there were a couple of very nice rooms down the hall (remember my rubber-necking proclivities?). These rooms are very nice...best view of both city and mountains with a separate, private room with a BED for family members to stay in...close to the family showers and bathrooms...just what every family member hopes and wants ( at least I was craving it). Or so I thought. Come to find out....that is where you stay when your loved one really doesn't have much time left and they are trying to keep the family together and as comfortable as possible as they say their goodbyes. Boy did I feel like a jerk when I realized that I had been wondering and trying to figure out how they got the 'good stuff'. See the change in perspective? Now imagine how humbled I was when I realized the families on our floor had young children staying there...some not more than 5 or 6. One young boy was saying goodbye to Daddy while another little girl was saying goodbye to her Mom. That's a paradigm shift of epic proportions. To help the children stay busy and give the parents some time together, a baby bunny magically appeared one night on the floor (I won't say where it came from since bunnies are on the 'restricted' list...but a Fairy Godmother dropped in with it and it livened up the spirits of more than just the children that night). Simple little animal, simple little happy feelings=really big and profound feelings of gratitude and happiness mixed with the hard knowledge that nothing in this world is very simple, other than LOVE. That's as simple as it gets...everything else has some degree of complexity to it...but Love is essentially a simple thing. So....here's to perspective...and the realization that sometimes it takes a little bit of knowledge, or hardship or patience to gain a different perspective. I won't be worrying about who has "the good stuff"....I won't be worrying about how to "get the good stuff"....I'm just going to revel in the stuff I have. And that includes Shea's cancer. I don't have to love it, but I don't have to let it hurt me or destroy me or make me spend my days focusing on it. I really don't know if I'm accurately describing what I am thinking/feeling or if I am just "rambling" again, but there you are. It reminds me of a part in Schindler's List that I often think of. For those of you who have not seen the film, there is a part where a wealthy Jewish family has been moved into a ghetto. They are shown to an ugly, stone room that really isn't very big. The husband begins to get angry and his wife says "It could be worse." He starts to 'adult tantrum' and yells "How could it be worse?". Right then 3 other families walk in and announce that they will live in the room with the couple. The husband looks at the wife in disbelief and then they start to laugh. I like that part of the film because it reminds me that it can always, always get worse....and it reminds me to take time out in the midst of the ugly and the horrible to look at those you love and just laugh (and believe me...for some of us that's fairly easy). That's why I am happy to be home....and even more happy to be getting ready for bed and being able to listen to my husband and Nick sit in my bed and tell each other jokes....then Nick came and hunted me down to tell me the same set of jokes. In the past my eyes would have rolled over several of them, but this time I laughed...twice. Shea is also happy to be home. She is getting a lot of rest and doing really well. She is excited to get back on track with chemo next Friday the 17th. She is determined to go to each night of the Miss Utah competition the following week to support Caroline. I am worried about her getting worn out with so many days out, but she is adamant about being there. So I will be cheering loudly for two girls...two fierce warriors LOL. The plan this week is build Shea's body up, get it stronger and then go in for another attack on the cancer. And we vow to keep the road construction on the way to Salt Lake into perspective...but that is going to be a tough one.....

VooDoo

Well, today has certainly been a long day for both of us. Shea had a hard night last night, so it has made today seem extra hard and tiring. We were told that the scope would be at noon, so we were geared up and ready to go. Shea really hadn't slept very much, so I was very happy when she announced at 11 that she would like to take a nap. I readily agreed, and I jumped up on my air mattress and snuggled in. The last thing I did was look at the clock...it said 11:03. "Great, that should give us almost an hour" I thought as Shea turned out the light and I closed my eyes. All of a sudden, the light pinged back on and Shea said, "Wasn't that a great nap? I feel so much better!". I looked at the clock...it said 11:05....I kid you not! I said "Shea! You only had the light off for 2 minutes!" and she replied, "Really? I thought I had slept for at least 20 minutes! Are you sure?" I can promise you that at no time in my life have I mistaken 2 minutes in bed for 20...and I have been teasing her all day about it. She is very good natured and laughs along...even if she is only operating on a literal few minutes of sleep. The scope ended up being at 2:00, which meant that it didn't start until 3. That is the life of a Huntsman patient on the procedure waiting list. It isn't bad though, since they keep you entertained with drinks and reading material. Today I snuck out back of the hospital and defrosted on the patio. It was nice to lie on a lounger and feel the breeze blow gently across my face. Very peaceful and very calming. This week at the hospital has been a rough one for me. I am sure the good Lord is just shaking his head at me. I referenced the fact that I had 7 days of bitter....that has just turned into 14. I'm not bitter at the Lord, or the circumstances, per se....I am just planning on making a few voodoo dolls. I kid you not....I have been mentally planning the pattern for voodoo dolls in my head. I know those of you who know me know I talk a mean streak, but truthfully I'm usually all show and no go...so it is disconcerting to say the least that I am mentally planning on sewing up a couple of voodoo dolls. I think I have finally lost it. I even dreamed last night on whether they would have a pattern for them in Vogue or Butterick or Simplicity. I hope Simplicity, because I find them easier to sew LOL. And maybe instead of directing my bitterness outward....I SHOULD make a voodoo doll called Cancer. Then I could stick a pin in for the fact that she is only 23....and she is in pain....and I don't know the outcome....and I'm not patient...and somewhere in all of this is a lesson, but I am too big of a wimp/baby/stubborn butt to give a crap about what the lesson is. So....the state of affairs today is this; I AM full of hope and I AM full of gratitude for all I have and I AM cognizant of the fact that my blessings and happiness far, far outweigh the bad I am facing, but.....I still think I will bring out the sewing machine when I get home.

Just Chillin' Out

We are still just chillin' out. Today has been a slow day punctuated by busy moments in time. It reminds me of being in the military, because there has been so much "hurry up and wait" going on. Shea has been struggling with severe pain since late last night which has been really hard to watch. For the last several days, her pain was hovering right around a 2 on a scale of 1-10, but late last night it spiked to an 8 and just wouldn't let up. It was hard to see her so upset and struggling. They had to give her a lot of medication which made her say random things for a while and then she settled in to sleep. Every once in a while she would mutter something under her breath which made me smile since it brought back memories of when she was a child and she would talk in her sleep. Today they put her on a clear liquid diet and tomorrow she is scheduled for a scope at noon. After that, we should know how much longer we will be here and what the next steps are. In a crazy way, we are looking forward to it. Today was my appointment at the Schleroderma clinic, so it was somewhat convenient to get up, shower and then amble over the the University of Utah Medical Center. I was able to have a pulmonary function test, give lots and lots of blood and have an echo cardiogram all before lunch. I will come back in 2 months for hand x-rays and a follow-up visit to see how things are going. My favorite part of all of this? Being told that I should get and stay in the sun as much as possible because natural vitamin-D from the sun is crucial (so see?....I SHOULD move to Florida or Arizona or wherever I can be warm. I prefer Se villa in Spain, but good luck to me finding a job there LOL) The bummer of the whole visit? Being told to avoid getting cold since that is bad, bad, bad. Did I mention the temperature of Shea's room? Even the nurses are starting a "bump up the thermostat" campaign. Unfortunately, we are losing that battle, so.....I wrap two hospital blankets around my head to keep my neck and ears warm. At night they cover my nose and chin as well....I look like some light-eyed Taliban member ( I told you I was making fashion history...), but at least I am trying to stay warm. I ate some sweet potato fries just to make me feel better...tonight I'll have hot chocolate and cookies for dinner, because that is how health conscious I am becoming. Basically my attitude has degenerated into..."If it feels good and tastes great...do it! Life's too short" , hence the hot chocolate and cookies...add a dose of the 'Bachelorette' and it is cracking up to be another fine experience at Camp Huntsman for the two of us. And because Shea feels badly about freezing her poor old mother out, she would like it to go on record that she is lending me her hoodie...and her socks....and asking for warm blankets on a regular basis just so she can share them with me. All I need to complete the camp experience is a fire and some s'mores....maybe I'll go upstairs and see if the chef will let me put my hands next to the brick pizza oven and roast a marshmallow or two before 7 when 'our show' starts. So that's about it....hurry up and get ready for the test.....wait 'till noon; hurry up and get the hot chocolate and the cookies....wait 'till 7; hurry up and wrap up in cold weather gear topped with a plethora of blankets....wait 'till August for warmth and summer. Just keepin' it chill...yo LOL

It's Cold at Camp!

Okay...I have escaped the frozen tundra of Shea's room for just a few minutes, since a Doctor is inside doing an exam. I decided that would be a perfect opportunity to post an update and maybe work out the kinks in my frozen limbs. 67 is sooo not the temperature I am craving! Shea would get it even colder than that, but that is as low as it will go. Thank goodness for Heaven's tender mercies! I was walking down the hall earlier today and a nurse thought that I was one of the patients. She was a little confused because I wasn't dragging along an IV pole, but my arthritic shuffle really had her going for a moment. Of course it didn't help that I was in my stripped pajamas and a Christmas sweatshirt with an ugly pair of flip flops. Now would be the time for "What Not To Wear" to video tape me...it is rather amusing that most of the people here look like they have stepped off the runway compared to me, but hey....I'm comfy, so I'm planning on continuing to 'rock' the look (but if "What Not To Wear" is in town, I would love, love to be on your show....I could use a new $5,000 wardrobe- don't tell them it would all go to shoes!) We really don't know what we are looking at here. Shea's white blood cells are up enough that they could send her home tomorrow, but there is some question about the stent. The plan so far is to go ahead and get a CT scan tomorrow to look specifically at what is going on in the bowel. At that point, we will know what to do or not do. So tonight we are eating salmon and stretching out on our beds. I have a piece of carrot cake for me and a sliver of cheesecake for Shea which I will happily eat in her behalf...all in all not a bad duty. If they had better bathrobes and a jacuzzi, I would think that I was camping out on the floor of a 5 star hotel...but I think I can handle it LOL. It is so beautiful up here, and if you are a people watcher, very interesting, as well. Some doors stay open, so you wave at the families inside and give a little nod or smile. Some doors have unwelcoming notes like "Don't enter-Painting (that one is getting a face-lift) and "Doctors..Do not speak to patient. She wants you to address all questions to her husband (How weird would that be? A three-way conversation with all of you in the room? Or maybe her husband is never here and that is her way of getting much needed rest in the hospital...if that is the case, I am going to try it next time I'm in for myself LOL) and other doors have notes for families or friends ("will be right back, I'm out on the terrace"). The biggest puzzle for me is the SLC Sheriff contingent that has been on one end of this floor for the last 2 days. Is it a friend that they are watching over? An Inmate here for treatment? I don't know whether to be smiling or serious when I walk by....how is a 'rubber-necker' supposed to behave?These and many more puzzling questions are how the days are filled at Camp Huntsman...very relaxing really with just enough curiosity and excitement to alleviate the monotony. And I forgot to mention church in pajamas...yep, that's right...church in pajamas. A whole meeting with everyone sitting in their hospital gowns or pajamas....family included. It reminded me of being a child at conference time...that wonderful Sunday where you could sit in your pajamas actually EATING while you listened to a Prophet's voice. Here it is a small, very spiritual meeting with the sacrament provided by volunteers. If you can't make the meeting, then they bring the sacrament to you. It was wonderful to feel the spirit and to have the sacrament. Shea and I were able to reflect on once again how many times we have felt the presence of the Lord and how often people and events have been directed by Him throughout the last few days. We continue to feel His spirit and the strength of each of your prayers. Thank you for all you do to help and support our family. Once again, words are truly inadequate to tell you the warmth in our hearts....and right now, I need all the warmth I can get!!

La la la

It is crazy how a song will get stuck in your head and just keep replaying over and over. That was the case with me this past week. A new song called Tonight, Tonight by I have no clue who, really struck a nerve with me ( not all of the song, since my girlfriend hasn't/isn't cheating on me haha). the beginning goes like this " It's been a really really messed up week. Seven days of torture and seven days of bitter (then the girlfriend thing) followed by lalala Whatever lalala It doesn't matter lalala Oh Well lalala. And that pretty well describes my last week of school and everything going on at the Liston home....and all I can say is "Whatever". As I was heading home on Thursday (our last day of school here in Brigham) I was pretty excited to be going home and starting a summer. I was thinking about the fun things I had coming up and was making a mental checklist of the dates and dinners and other commitments that the kids had told me they would be involved in over the next week. all of a sudden, my phone rang and it was Shea crying. She told me she wasn't feeling very well and that she was running a fever. I hurried home (thank you Brigham City PD for the inattention on Main Street Thursday afternoon...I for one surely appreciated it! And I'm sure you were very busy elsewhere, which definitely worked for me.) After taking Shea's temperature again, I called the Huntsman Center and was told that they wanted to see her. They told me to plan for a possible overnight stay, so I packed the trusty new air mattress, some extra jammies for Shea and a change of clothes for me and we were off to Salt Lake. When we arrived, they drew blood and it wasn't long before they decided to admit her. Her white and red blood counts were quite low and they knew something was going on. She received chest x-rays and a CT scan which showed good news and bad news...the tumors in her liver have shrunk considerably, but it appears as if an infection is running rampant throughout her colon. Since Thursday she has received a couple of blood transfusions, lots of antibiotics, lots of saline and a myriad of medications. Thursday and Friday, she was feeling really well and eating like a horse...she would order 3 meals for lunch and dinner and then proceed to eat them. For example, one dinner was fish and chips, a large veggie plate (a small tray size really) and a big turkey and roast beef sandwich. Room service told me..."That's alot of food for one Patient" and I said "Why yes it is, but she will eat it all, so bring it anyway". So today (Saturday) when she wasn't feeling very well, it made us laugh when room service called Shea's room at 6:30 and said "Shea hasn't ordered anything much today....just a little bit of broth. Can't we bring her anything?" They even sent one of their runners down to the room at closing time to make sure that she wouldn't starve to death through the night. So, the long and short of it is this...when Shea is eating hearty, so am I. When Shea is eating minimally, so am not I. It will be a miracle if my air mattress survives the onslaught of unlimited sunchips, peanuts and oreo cookies that Camp Huntsman is so willing to so thoughtfully provide. but hey...everyone has to have a hobby...and I am pretty good at mine :) So...we are waiting 'till tomorrow morning when the team of doctors make their rounds to hear what the next steps will be. If everything looks good, we should be coming home on Monday afternoon, if not....we will be staying at Camp Huntsman for a little bit longer. Overall, Shea is keeping her spirits up and she is doing well. I had several nurses tell me at different times that they actually fight over who is going to help Shea because she is so pleasant and happy to be around (and a couple of them tell me that the young orderlies want to be assigned her room because she is so cute...which really works for me because one in particular keeps bringing me warm blankies straight from the oven...man, I like that guy!) So...she is happy, pleasant, semi-healthy and fun to be around. I am happy, increasing in girth, cranky and cold (Shea keeps the room at a tropical 67 degrees) so....Lalala Whatever lalala It doesn't matter lalalaa Oh Well..lalala.

Update (and it's late)

Wow!! It has been so long since I was able to take a few moments and sit down and update everyone on what has been happening with Shea/and the Liston family. Shea has now completed her third round of chemo, and everything seems to be going really well. She had scheduled chemo for a Saturday morning, instead of going on a Friday this go around. Because they only had 15 "customers" on Saturday, we were given the private room. This is a separate room in the infusion area that has a bed, a chair and a 'love seat'. I say love seat...but I'm not really sure what you would actually call it. You have to imagine two folding chairs welded together to create the basic frame...add some horrible upholstery, and Viola!!! Instant 'love seat'. Shea and I had to wake up at 5 am to arrive at the Huntsman on time, so when they ushered us into the private room, I thought "Great! Now no one can see how horrible I look." At that point, I had thrown on some clothes, brushed my teeth, dragged a comb through my hair and called it good for the day. A very nice nurse came in and went over the plan for the day...blood draws, iron, chemo, etc. I decided to lie across the so called love seat and close my eyes for just a moment or two. I woke up at 1:30, right in time to watch the last of the chemo infusion drip in. You have to be practically comatose to sleep that long on a torture rack like that one, but somehow I was highly successful. Shea said she debated about waking me up and inviting me into the bed with her, but I never stirred around enough for her to feel good about disturbing me. So...I can not tell you any information about what went on at this last chemo session...I totally have no clue (people will tell you that is generally the case with me). On the way home, Shea was craving a steak (yea for me, to get to go along) and so we stopped off at Texas Roadhouse for a yummy meal. It was fun to just sit there and talk. Shea saw a couple of fun friends from high school there, so it was nice to see her have the opportunity to talk and joke around a little bit with someone new. Shea's doctor called me on Sunday afternoon to report that her lung x-ray looked good and that her CEA levels had dropped even more...they are now at 55...isn't that fantastic?!! I sure think so!! So now here is the new/expected information for our family. When Shea was diagnosed, so many people have expressed the feelings of how young she is to have this type of cancer. From the beginning, Huntsman suspected a syndrome called Familial Adenomatous Polyposis (FAP) or Gardner's Syndrome. That would explain. in part, why so young. She had genetic testing done, and we have been waiting these past few weeks to know if that is the case. I had felt like it was a fairly certain diagnosis, and today the genetics center called to confirm that Shea does indeed have FAP. I will basically give you an idea of what we are looking at, and the next steps that we will take as a family, and if you want more info on it, please feel free to Google it....I know I did. Just make sure that the site that you get your information from is a good one (that's what Huntsman told me, so I am sending that golden nugget on to you). Anyway, I will tell you what genetics told me today. There is a 30% chance that Shea got this syndrome prenatally...her cells just mutated, and bam....FAP, aren't you the (un)lucky one. The likelihood that it will affect anyone else is pretty slim. There is a 70% chance that Kelt, or I, or both of us are the carriers of FAP. In this case, it is possible that Kelt, or I or some of the other kids also have FAP, and Shea isn't the only one in that boat. So, in the next couple of days we will schedule an appointment and everyone in the family (other than Shea) will head to Huntsman for blood to be drawn for genetic testing. We will wait 2-3 weeks ( hopefully not any longer than that) and then we will know who also has or doesn't have the genetic markers for FAP. If someone has the marker, they will get a colonoscopy and we will go from there. FAP is a very rare disease, so it would be very, very rare for someone else in the family to have it...but it has been known to happen, so we need to be as proactive as possible. Nobody is freaking out yet, but it is as if Eeyore's little black cloud likes to hang over our heads (and it doesn't help that it is always actually raining every stinking day, for pity sakes!!! I'm not telling the Lord what to do....I'm just pointing it out and saying a loud 'just sayin'....and hoping that the big hint is duly noted and corrected) So....I will let you know when the appointment is, and of course the results when we get them...but seriously...don't hold your breath....this is going to take a very long while. The other reason I have not written for a long time is because I couldn't. I was struggling with moving my hands and being able to walk before Shea's diagnosis of cancer. So, I have been waiting a long while to have someone help me figure out what was going on with me. My diagnosis came back this week as Scleroderma...a butt-ugly name for another semi-rare disease. Are you kidding me?? My doctor's comment to me was "This is a very expensive and hard disease to have" My rebuttal..."Why of course it is....I wouldn't have expected any less". I think he thinks I'm crazy......if only he knew. So I am heading to the University of Utah on June 6th to do some tests and to have them tell me whether I have the semi-crappy version of this or the really, really crappy version of this. I'm hoping for semi-crappy......I do semi-crappy really well (it comes from years of experience). They also mentioned that they would probably want me in a study of some sort, and since I don't want to pay a bunch of money out to even more doctors, I have agreed. So I started researching the studies that are available, and guess what is a possible menu item?? You guessed it....marijuana brownies. Hahahahaha, who would have guessed (did you?)?? Not me...and I busted a gut laughing about it, but then I realized after some more research that this particular study isn't available in Utah.....drats!!! So I'm still out the brownies (can I get a Hallelujah and an AMEN, Bishop?) So, just one more thing I will keep everyone posted on. Now, on to the stuff that makes me happy, but truthfully somewhat uncomfortable. I hate to ask for help...I am after all, a legendary "tough girl" (all Marines are, or else they pretend to be), but some wonderful friends are planning a benefit for Shea and I have agreed to help get the word out. Mark your calendars for July 29, 2011. It will be held at the Box Elder High School and will consist of dinner, a silent auction and a variety show. Salt Aire Foundation is sponsoring the event and they are looking for anyone willing to serve on any of the committees...food, entertainment, publicity/advertising....and any help to run the event on that day. They are also looking for items for the silent auction, so if you, or anyone you know has something that they would like to donate, they would appreciate that as well. If you want to leave a message to me on this site if you are interested, you can do so and I will get you the contact information. Hopefully in the next couple of days, I will be able to link you to the site that will give you more details and keep you posted on the event. There...that was hard for me to do, but I am very grateful to everyone for all of their support that has been generously given in so many ways. Each act of kindness and prayer has been the reason for our ability to keep our heads up out of the water (even though I'm serious when I say that the rain has got to STOP!!) We love you all, and we are glad you are each in our lives. So....Rain, rain go away, stop sending crap...I want to play!! (My own childhood version of that lovely song)

Happy Mother's Day

What a long, tiring and absolutely wonderful day Shea and I had today. We were up bright and early to head to the Huntsman. It was funny, but right when I woke up, I had an excited and happy feeling flowing all around and through me. I was trying to talk myself into not getting my hopes up too high, because I didn't want any more bad news to ruin the day. We had Shea's lab work drawn and all went well there. Then she was weighed and she is holding steady at 110 lbs...go Shea!We then had a visit with Shea's team of Doctors. They told us that Shea was good to go for chemo. What was even more exciting was the fact that all of her blood work looked much, much better than it had....even before the first round of chemo. Her oncologist said that it looked pretty much normal, so we aren't anticipating needed any more home infusions in the near future. When we went back to the infusion room, one of our favorite couples was there Remember the sweet lady who had the allergic reaction to chemo a couple of weeks ago? Well, she and her husband were back, ready to give it another try. She said that she had stayed up all night worrying about having to give chemo another try. Shea and I were so nervous as we watched her try yet another medicine. It was successful! The four of us laughed and almost cried when we celebrated the fact that she would be able to receive treatment. It was so sweet to watch her husband hold her hand and tell her over and over how much he loved her. I was thinking about how lucky and blessed Shea and I were to have so many great things happen at the Huntsman, when one of Shea's doctors called my cell phone. She very excitedly told me the very best news of the day..Shea's CEA levels had decreased. CEA stands for carcinoembryonic antigens and it is a protein marker in your blood that can tell the doctors about the progression of the colon cancer, but it mostly tells the doctors if chemo is working and if it is a viable option for treatment. Before chemo, Shea's level on April 2, was 306.4. Today it was 108.7. The doctors and infusion room nurses can not believe that it had dropped that far that quickly. Everyone is amazed, and I am almost giddy with the knowledge that this is the first indication that we have been given that lets us know that Shea has a real fighting chance. ALL of YOUR PRAYERS are WORKING!!! Thank you so much...I have always said that I can feel your prayers surrounding me like a nice, warm fuzzy cocoon....but now I know just how amazingly powerful they are. We are so blessed to have such wonderful family and remarkable friends old and new. Each of you are a blessing in our lives. I feel like I have been given such a beautiful gift by Heavenly Father....and it is noted that it was right in time for Mother's Day...what more could a Mom truly ask for? Happy Mother's Day to all in advance...I think I'm going to take a couple day's break to just wallow in the first good news that has come our way since the journey began. We feel like for now, we are holding tight to the Lord's hand and our heads are finally way above the water line....and it feels good.

Just a Couple of Fools

Well, tomorrow is a big day for us...Shea's second cycle of chemo (or so we hope). I'm feeling fairly positive that it will go according to plan, and I think Shea feels the same way. She has really perked up quite a bit in the last 48 hours and is looking really good. She has been eating really well, which makes the Mom in me happy. I told her she was finally eating human-sized portions instead of bird-sized portions (it is at this point that my Dad would lecture me on the fact that birds do indeed eat an amazing amount of food for their body weight, which means that someone who "eats like a bird" actually is continually stuffing their faces with food....so technically that would be me, not Shea. But hey, I didn't start the saying, I'm just repeating it and thank goodness Dad doesn't have a computer to follow the blog... so there. Wow, somehow I feel better). So back to Shea. She has had two meals of salmon, rice and green beans. Big, big pieces of nice Alaskan Salmon...it doesn't get much better than that (if you are not a fish lover, we are sorry, but Salmon is King...that's why they call it that). She has been drinking tons of orange juice as well... which, guess what? Is loaded with potassium....yea!! So all in all, we are ready and prepared for tomorrow. I was at the DI today looking over the books because I needed some new reading material to take with us and I came across a book by Billy Graham called 'Answers to Life's Problems'. Well, hot dog! Just what I needed, so of course I had to flip through. One of the chapters was called "Do I Need a Psychiatrist?". I kid you not. For 2 dollars, I had to buy it so I would know. Come to find out....I don't (so haha to my posse of doubters)...but he had some good and interesting points to make in that chapter. It mainly boiled down to this...if you are Christian, you should be a happy fool. Isn't that great? Fools, Unite!! Basically, you are a fool if you don't believe in the resurrection and all it means in your life, and if you do believe then you should be so doggone happy that a smile should be imprinted on your soul and on your face to the point that people might think you are a fool. I actually kind of like that thought...and the more I think about it, it makes sense to me. The gospel is after all...good news, and nobody ever heard good news with a frown planted on their face. And it is really hard to be worried, nervous or depressed when you are being 'foolish'. So I'm taking Billy's words to heart, and I'm going to be a dang fool for the next couple of days. I'm going to smile and laugh and joke....and I'm going to make sure that Shea joins in. As Reinhold Niebuhr once said (whoever that is...and why on earth did his mother name him Reinhold....disregard that if you or anyone you know or love goes by the name of Reinhold) "Humor is the prelude to faith and laughter is the beginning of prayer". So in the spirit of a couple of true prayin' fools, Shea and I plan on saying lots of prayers...both kinds...and we hope you will too.

Scatter Sunshine

I've never met Lanta Wilson Smith, but I'm fairly positive that I would absolutely adore her. Or him, I'm not really sure which, but with a first name of Lanta, I'm going for a girl (Of course, I grew up down the street from Laverne, and he didn't take kindly to people confusing him for a girl just because of a name...but at least he was smart enough to go by the name of 'Butch") So back to Lanta...she/he is the one responsible for the lyrics to LDS hymn number 230. It is called Scatter Sunshine and the lyrics go like this: In a world where sorrow ever will be known, Where are found the needy and the sad and lone, How much joy and comfort you can all bestow, If you scatter sunshine everywhere you go. Scatter sunshine all along your way, cheer and bless and brighten every passing day. Now either Miss Lanta was a sweet, kind and gentle lady, or she was a scamp who knew the value of a good old-fashioned parable (layers of the onion and all that jazz). I hope she was a scamp with an agricultural background who decided to write a hymn that could appeal to both saints and sinners (guess which camp I'm in?), because any one who grew up on or near a farm knows that scattering sunshine is what you are doing when you are spreading copious amounts of cow manure around on the fields. Finally, something I'm good at!! And I get to sing about its merits!! I have been spreading huge amounts of B.S. merrily around almost all my life. Some would claim that I have made it a career....I choose to think of it as a hobby or a delightful little pastime. Just think of all the joy and comfort I have been able to bestow while I was scattering sunshine everywhere I go (went....whatever). So I choose to think that Miss Lanta knew all of this information and she needed a little "feel good" hymn that could give her the giggles every once in a while....and I appreciated the fact that I giggled my way through all three verses on Sunday...I really needed the lift. And life shouldn't be so serious all of the time. It was great to giggle on Sunday, because I had almost talked myself into not going to church. I had the feeling that everyone kept looking at me waiting for the 'great melt-down/temper tantrum/fall apart'. I'm just not feeling it as my girls would say. I still have such a feeling of peace and calm even in the midst of all of the chaos and bad news...so it's been really difficult to muster up a nervous breakdown. I don't have the time or the inclination...so I was feeling badly about not being able to respond the way I felt people were expecting me to...so that translated into not going anywhere, including church. But I realized something while singing that crazy hymn...I was busy scattering my very own brand of manure. I was interpreting every look, gesture, body movement, etc. when I really just needed to relax and let my own anxieties go. I was watching Shea in the same way I 'felt like' people were watching me...so really I was just wallowing in my very own brand of B.S. I've been watching her for the 'great melt-down/temper tantrum/ fall apart' and it hasn't come yet. She is doing well. She actually went out to dinner with a friend and enjoyed her time away from the house. The doctors had asked her to start an infusion of potassium tonight (It would have lasted until 4 in the morning), but she turned them down cold. Something about needing a quality of life in the midst of fighting for her life. So she called B.S. on that one, went to dinner and will start the infusion at nine in the morning. The doctors will continue to monitor the quality of the potassium levels in her blood, and we will continue to give her infusions of her "brew" as needed. With luck, medical magic and a blessing thrown in for good measure, Shea will receive her second round of chemo on Friday. I'm proud of her and I'm also surprised that Shea hasn't popped me one yet...so here's what I propose...1. Everyone continue to do what they feel good about doing and everyone (translated to mean mainly me) can stop trying to interpret it 2. I'll stop over analyzing everyone else and decrease under analyzing myself 3. Let's all start (or keep on as the case may be) spreading sunshine all along our way...whether we are scattering sunshine of the happy sort or scattering sunshine of the bovine type...it's all good and I believe that the world needs a little bit of both (opposition in all things and that stuff). And thanks, Lanta....I really needed that!

Plain and White

No...the title is not a statement about me...although it could be. It is all about Shea's new regimen which I will detail out later in this post. I can't believe that May is almost here and that this will be the last post for April, 2011. I had somehow hoped to have a better handle on what exactly this journey through cancer was going to entail, but apparently I was very naive (stupid/hopeful/optimistic/crazy?) I now fully understand what the saying "got the tiger by the tail" means...I am just hanging on, but hanging on is what I am doing...so I hoped the tiger packed a lunch because it is going to take a good long time to shake me away from battling this one. We took a drive to Huntsman early this morning to begin the second cycle of treatment for Shea. We almost threw an impromptu party when they were weighing her in today...she has gained 4 lbs!!! She already is ahead of me, dang it (we have a race going to see if Shea can gain 20 lbs before I can lose 20 lbs....put your money down on her hahaha). Today her doctors told her they have a drug to stimulate her appetite if she doesn't gain more weight. They very seriously told us that it was a marijuana derivative, so they knew it would work. I laughed and told Shea she might get her medicinal brownies after all. Shea had all of her blood work drawn and we were told that her iron and potassium levels were still too low...so no chemo. So, the report is...Shea is fattening up, but she needs more umpf before more chemo. She was given a nice, comfy bed in an infusion room (she looked too worn out for the regular infusion room, so she wasn't asked to sit in a recliner all day. Hmmmm, note to self...if facing the butt-numbing chairs in the infusion room....fake sick....really, really sick...and see if you can score the bed...it is so way worth it). So, she was tucked up nice and tight, given grape juice, warm blankets and a TV...along with a couple of bags of what I am beginning to refer to as "Shea's Special Brew". Her blood will be monitored throughout the week, and if she needs more infusions, Kelt and I get to play nurse. We are scheduled for a return trip to the Huntsman on Friday and once again we will plan on doing the chemo. Until then...it is an all white diet (a good friend of ours calls it that, so it made me laugh today when the dietitian called it that as well) white bread, white rice, white bananas, white cream of wheat, white sour cream, no fried okra, no pulled-pork or barbecue chicken and Shea's new favorite....Minute Maid Cranberry Apple Raspberry. So....white is the new black...or so I'm told (it sure is boring, though).

Bananas

It is after 5 p.m. and we are going bananas. We have just returned from the Huntsman center. We were on the road by 7, so it has truly been a long day....long enough that Shea went straight to bed and is sleeping. When we arrived at the Huntsman, we had the opportunity to talk to several of Shea's 'teams'. There was the team in charge of the clinical trial, the colorectal team, the oncology team and the newly formed find a wheelchair/warm blanket/entertainment team (me). It was determined that Shea has a problem maintaining her potassium levels and maintaining/gaining weight("Surprise, surprise, surprise" said in a Gomer Pyle imitation....and if you don't know what I'm talking about...you are too young and so you should bring me brownies as penance for your youth). After drawing 7 vials of blood...yes 7...we were escorted to a chair where Shea spent the rest of the day receiving a saline/potassium solution infusion. She was also required to take an oral potassium supplement, as well. She was told there were two types...a really, really big pill that you only need one of or 4 smaller, coated pills. Since her throat is sore, she opted to take the 4 smaller, coated pills. Imagine our surprise when the nurse brought us 4 electric blue torpedoes that Shea was expected to kack down while maintaining her grace, beauty and dignity. I'm not sure how big the single pill would be, but I know you would have to be a sword swallower to be successful with that one (and if you need to try, will you call me because I really want to see the attempt). Shea gathered all of her mental will together and with a little help from some cranberry juice, she emerged victorious...Shea 4, potassium pills 0. To help get her ready for this weeks chemo treatment, she will be receiving a saline/potassium infusion daily here at home. They will re-check the blood on Friday and see if all of these measures are working. They will also reduce her dosage of the RAD-001 to see if that is maybe contributing to the problem. We were told...more leafy green veggies, cream of wheat and you guessed it...bananas. Fingers crossed (and all my toes)it will work.

The "Scrambler"

No....this blog is not about all the eggs we have colored, decorated and 'et' in the last two days. It is about what we have been doing emotionally and physically the last two days. It reminds me of when I was a little kid and I was always compelled to ride the "Scrambler". You know the one... your seat turns one way while an arm of the ride turns the other way. I loved to ride it as a child mainly because it would make my parents sick but not me (always a big plus as a child...you'll take whatever superiority you can get when you are young) and because we could all smash into one seat together to ride. I liked being that close to my family even though at that age I pretty much couldn't stand them....sibling rivalry and all that stuff. Because I was little, I always got the outside seat so I was able to fly into everyone else and make them miserable while the wind whistled through my hair and I felt like I had control of everything. It was great!!! When I became a parent, for some crazy reason, many of my children also loved to ride the scrambler....me not so much. I think I realized that I didn't have control over anything, all of the turns and movement made me sick to my stomach and I was the one getting smashed up against the side of the ride. All in all, something I tried to avoid at all cost. So today, I was thinking that dealing with cancer is a lot like being that old person riding the scrambler...over and over and over. You are compelled to ride it...and at first, it isn't so bad. Sure, you are a little dizzy and your stomach is turning a bit, but it isn't anything you can't handle...then you realize..."Wait a minute! Isn't someone going to stop this fool thing? I would like to get off ...please? "...but it just picks up speed. You're stuck...you are riding and the only thing left for you to do is rearrange your position, try to get comfortable, put your head down, breathe slow and easy to avoid throwing up, push an arm out to ward off the worst of the smashing and blows that are coming your way, and focus, focus, focus on the cool wind blowing over you....after all...that is what the ride is all about. Being together and trying to enjoy the ride. I feel like I have my arms around Shea while she takes blow after blow and of course, it makes her crash into me...and we just can't stop the ride. I'm desperately trying to get the attention of the carnival workers....but they are too dedicated to fulfilling their jobs to really catch our eyes...so we just stay on the ride and hope to heck we don't throw up. So there you have it... cancer is like being scrambled on the scrambler. Now that you are all concerned about my mental state of mind (which should not be a new thing for those of you who know me well), I will tell you about the last few days. We were so excited that Shea's blood work had gone well, until we heard from the Huntsman. They were concerned about Shea and her low blood pressure, so they ordered up an IV pole and a bag of Saline to arrive on our doorstep. Our home health care nurse called and said that she could come on Easter or Monday morning to give Shea the IV. We told her to enjoy Easter and we would see her on Monday. We had a good Easter, but Shea was a little worried about needing an IV. Shea had planned to have a friend come over and give her and me eyelash extensions (an early Mom's day/birthday gift from Shea)...so the plan was to do eyelashes and then an IV, then have a fun chill-out day. Shea had half of her eyelashes done and then it was time for the infusions. Two attempts to access the port and Shea was in pain and discouraged. While the home health care nurse was calling to figure out what we needed to do, Huntsman called us and said that they had looked over Shea's blood test from Friday and they wanted us in Salt Lake by 3. So much for trying to do the infusion today. Kelt, Shea and I packed up and headed down to Salt Lake. They decided to access her port...do the infusion...and take her blood so that they could compare it with Friday's offering. Thank goodness they did. Shea's potassium level was in the critical range and so they added that to the IV cocktail. Therefore, we spent 'Happy Hour' in the infusion room at the Huntsman. We were finally sent home and arrived here at 10 p.m. Shea and I will be on the road by 7 a.m. in the morning for a command return performance at the Huntsman. I think it is because they are concerned about Shea's weight. She has lost 8 pounds this past week. It broke my heart to see her face fall when the nurse told her how much she weighed. She was so upset! She really needed a good cry about the whole thing, so thankfully she was able to do that once she got home. It's nice to know she has friends out there who she can cry to...and they listen. It really sucks dirty ditch water when you are the Mom and you have a child with cancer (although I'm pretty certain it is worse to be the child with cancer and you have to deal with dumb Mom). I feel so helpless...and I HATE that! For heaven's sake...my spit alone is industrial strength and has cleaned up several messes over the years...and now I can't do jack spit to help Shea out. Sometimes it makes me want to throw a really good tantrum or scream....or just do something/anything....but I can't. So....we will continue to ride the Scrambler....we will smile at all of the carnival workers and the other helpless riders....and we will continue to dodge the scary clowns. First thing in the morning.