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.

Happy Easter

Shea had her first home blood draw yesterday. Our nurse was able to draw it from a vein in Shea's arm rather than use the port, which is a really good sign. It means that Shea is hydrated and doing well that way. However, they (meaning home health and Huntsman) called and said that they want to do an infusion of some vitamins and minerals to boost up Shea's blood content. They will probably do that on Monday morning since we figured we could find better things to do on Easter day. I feel like I am in a tailspin ever since someone mentioned to me in passing "What are you going to cook for Easter dinner?" WHAT??? Easter is in two days???? Arrrgh!! Nick calmly looked at me and said, "Don't worry Mom, cook whatever. The Easter Bunny will do the rest." hahahaha The Easter bunny had better bring along the Tooth Fairy to help him out because I am behind, behind, behind. Thank goodness that Caroline went with me today to Walmart and hopefully we pulled a bunny, some Easter grass, treats and an Easter dinner out of the hat. Shea's friends at Lynn's Audio and Video helped her out and she now is sporting a new TV and Blue Ray DVD player for her room. I contributed dark curtains to turn it into a great movie theater. LOL Kelt is drooling and anxiously awaiting the installment of said TV. I'm sure Shea's room will somehow now become the "Man Cave", whether she likes it or not. We are settling into a routine and I catch myself sometimes thinking that maybe I am living in a really weird dream....it sometimes just doesn't seem real. Shea will be laughing or telling me a story, and my brain just can't accept what my own intellect knows to be true (perhaps that's the problem...me relying on my intellect). Other times the cancer looms up over us and then we have to brush away tears, dust ourselves off and move forward. Thankfully, the sad moments in time are much shorter and quicker to move on than the good times. I was able to tell a couple of stories about Shea as a baby today. It was fun to reminisce about life and Easters past. She used to never let me take her outside the house without a big bow in her hair. She would pitch a big fit. Because I'm lazy, I quickly got her addicted to hats, so she would wear a hat all the time when she was little. She always looked like such a cute, old woman!! She had the best hat collection in town. I told her we should start finding some really funky and cute hats to collect...even though she gets to keep her hair, it would still be fun. It has been a long time since I bought her a full, frilly dress, gloves and a hat for Easter that's for sure. So instead, this Easter I will be cooking the menu of her choice...green beans, rolls, pork loin (lemon herb and maple bourbon...no I'm not buying/using the real stuff...I just bought it that way), funeral potatoes, room temperature Canada Dry and fruit for dessert. But aside from the candy, food, baskets and good times, there is nothing like having a loved one face the fight of their life to live to make you grateful for the Savior. Especially at Easter. The fact that He Lives is one amazing statement and belief. I know I'm grateful for that fact...and I'm grateful to know that I know that for a fact. No matter what...we are a family and always will be...that is what Easter means to me this year. So when you see that bright, beautiful Easter morning roll around...grab your loved ones, hold them close and count all the blessings that you are able to daily share with them. That's exactly what I'm planning to do....Happy Easter!

The Wish List

Okay, so we are learning with chemo that you never really know what to expect. Shea's taste buds are going crazy and she doesn't ever feel like eating a lot, so we are constantly trying to find bite-sized pieces of different foods to tempt her palate. Things she likes so far; pepperoni pizza, rice, potatoes (spell check put an e in here....is that right or am I crazy thinking that is wrong?), chicken, Fiji water, grape juice, some kinds of cranberry juices, blue Gatorade (the something freeze....I can't remember the name) and bananas. That's it. So, we are going to talk to a nutritionist on the Friday that we head to Huntsman so that we can get the biggest bang for our nutritional buck. Shea still has a bunch of pain in her shoulder and she feels like it is getting more difficult to take so many pills since her throat feels sore and tender, but overall she is doing well. She looks really good today, and she has been able to be more active. She and Kelton did a few errands today, so she did spend some time away from the house. She has mentioned that she loves having everyone come and visit her, but she gets tired very quickly and is too nice to say "scram"....so as the dragon mother, I will say it for her. We love each and every one of you, but we have to worry about Shea's stamina....so please, please, please limit your visit with her to a half hour. If she can handle more, she will invite you to stay longer. If you want to visit with the rest of the family, that can be different, but for now we need to enforce the half hour rule. (all of those half hours add up really, really fast). I hope I didn't sound rude, or upset anyone, but I'm sorry....I'll try to make it up to you when Shea is up to snuff. I have also had several people ask me if we would start an account for Shea so that they can donate and help out. I went to America First Credit Union today and opened a charitable account for Shea to help with the infusions and the trips to Huntsman. It is under her name, Anna Liston and the account number is 9046327. Thank you in advance for your support....you wouldn't believe how fast Fuji water adds up haha. The family is doing well, but I think I am in my "anger, followed by tears, followed by frustration, back to anger" state of mind. It is frustrating to not know how to help, but watching a child struggle. I am trying to always look for the funny things in life, and I have a great support group around me, so I know I'll pull through okay....I'm just not real happy about being on this journey at the moment. I feel dumb and weak when I watch Shea handle herself so well and I'm just a complaining woosie (how do you spell that word? No spell check for that one), but there you have it....I ramble and I'm a woose (wuss, wous, woss....? and I suck at spelling) Okay, so here is what we need.....Shea would like some magazines to read or some books of Sudoku (which she loves), a couple books on tape would be nice, a wheel chair that we can borrow for impromptu rides around the block and help with the Fiji water fund. I want jokes, funny stories, smiles and a miracle....I'll take whatever you and the Lord can send. :)

Round One Over and Out

I just realized that I have never fully explained the 'chemo ball' and it's importance in our life. When Shea left the Huntsman, she had a cute little fabric bag draped around her neck that carried her chemo ball. This is a ball filled with our favorite drug FU-5, that will be her friend for a couple of days after each infusion. The ball is attached by a line to her power-port and it automatically pumps the drug into her system....kind of like an at-home, do-it-yourself chemo treatment. The nurse had mentioned that she might see if they could leave the needle in for the blood draw coming up on Friday, and if that were the case, she would teach me how to flush the line and disconnect the ball. The look of absolute horror that moved across my face did not deter her, but I prayed mightily to be spared that task and lo and behold the nurses at the Huntsman came through for me and nixed Nurse Rachet's ( she really is a very, very nice person so that wasn't fair to call her that ) brilliant plan....hooray!!! (anyone who knows me knows that I am a bawling, boo-hoo baby when it comes to anything that has to do with needles. I find them to be the creepiest things on earth) I was told to watch Shea for any discomfort and rises in temperature. I was given specific instructions to call the Huntsman and the home health care nurse the immediately if her temperature reached 100.5. By evening, Shea was very tired and had been dozing off and on all day. At 10 p.m. she told me that she really didn't feel well, so I took her temperature. It was 100. All I could think of was "Are you kidding me?? Close enough to worry, not close enough to call...or is it? What do I do?" Finally I said a quick prayer in my heart and told Shea to rest for a little bit. I would re-check her temperature in a half hour and if it was the same, I was going to call anyway. Thankfully when I did the re-check, it was 99.2. That we can live with!! I was still nervous enough, that I threw a sleeping bag on her floor and slept there all night. She only woke up once and overall did well after our initial little scare. Hopefully, my back and hips will recover....the old grey mare just aint what she used to be! Our nurse came and disconnected the chemo ball today, so one treatment down...a whole bunch more to follow. Shea is doing much better today and I am hoping that she can get some real rest now that all the extra paraphernalia is removed. Today was a beautiful wet and rainy spring day. Caroline was conducting a ward choir for her stake conference in Perry, so Jenessa, Nick, Kelt and I attended church there today. All of the talks were exactly what I needed to hear. Someone made a statement that I had never really thought about in quite that way. He said "We believe in the Gift of Healing. As I held my young son and he passed from this life to the next, I realized that he was healed. Through our Savior Jesus Christ, we are all healed, whether on this earth or in the realm to come, we all freely given a healing." That really resonated with me. This weekend, I feel like I have shed more tears than I have in the previous two weeks and yet those tears have always been followed by a sweet, calm feeling that I truly can't describe. I am so grateful to my Heavenly Father for the testimonies and the beautiful music that I heard today. I know that Heavenly Father is mindful of each of us, especially Shea and that He is there for her every step of her journey....if that were not true, we would not be able to even begin to face this fight. I am grateful for the power of the healing spirit that I feel each day...I know so much of it comes from your prayers and fasts in behalf of Shea and her family. Thank you, thank you, thank you!

Retail Therapy and the Chemo Ball

Wow, the past two days have been crazy and hectic and tiring all rolled into one. On Thursday Shea and I went for a little bit of 'retail therapy'. We figured it was time to get a few things to make this journey an easier one. Shea bought some cute, flat comfy shoes and some adorable sweats. We met some dear friends for lunch and then headed up to the Moran Eye Center for an eye exam and some glasses. She was put through all the typical eye doctor paces....eye dye to check for glaucoma...which is best? 1 or 2....eye dilation, etc. etc. Her eyes are healthy and wonderful...not to mention gorgeous (her doctor announced her the winner of the "Longest Eyelashes of the Day" award), so we are happy about that. However, she needs glasses to help her eyes focus better when she is tired or not feeling well...which happens alot. So, we happily marched down to chose a pair of glasses for her. Those of you who wear glasses can imagine what happens next. When your eyes are dilated, you can't really see a thing. So there is Shea trying on glasses and asking me "Do they look good? What color are they? What do you think?" Really, when it comes to glasses, I am utterly useless....I always ended up wearing the most hideous things throughout my eye wear days. I THOUGHT I looked good, but after they were purchased, I realized that what I had chosen was downright butt-ugly. So talk about pressure! Thank goodness the eye technician and the other workers had some good ideas on how to help us choose a good pair. They are tortoise-shell with some funky designs on the earpieces in a turquoise blue (try spelling turquoise and tortoise in the same sentence without spell check and 6 hours of sleep...that's a trip) Any way, they are handmade in France, so they are either going to be incredibly fabulous or they are going to stink....either way, they will be frightfully expensive hahaha. I think she looks adorable in them. After the Moran, we headed to the salon for an eyebrow 'threading'. For those of you who don't know, this consists of a woman and some thread. She twists the thread in her hands and it pulls out any unwanted hair. It is supposed to last longer than a wax and be less painful. Yea right, just like when the nurse says to you "It won't hurt" and then it is agonizing pain. (I can still feel the 'zing' from 5 years ago whenever anyone says the word catheter) This was positively the most brutal thing I have seen Shea endure in the last two weeks. All of the pokes and prods that she has been subjected to, and I start to bawl over an eyebrow threading. Shea and I laughed/cried over that fact. I was going to get my eyebrows, and upper lip done, but no way after that! I'll grow a mustache and beard and rock the full-facial hair look before I willingly ask for that little procedure. So....I have decided that I have a new list....this is my "List of People Who Should be Forced to Endure a 'Brazilian' Threading"....and it starts with the girl who threaded Shea's brows, followed by a few other choice names. Don't worry...if you are reading this, you are probably not on my list. Friday we were up bright and early to arrive at the Huntsman by 8 in the morning. The team of doctors pronounced Shea fit and ready to take on chemotherapy. We were escorted to a room with a beautiful view of the mountains and Shea was snuggled into a large electronic chair. She was hooked up to an IV that accessed the port on her chest and the fun began....2 hours for that drip, 4 hours for this one, one hour for that, etc. etc. etc. There were 5 other chairs in the room with little curtains that separate each family. The nurse stated the chemo drip for the sweet lady next to us and had just got Shea's started , when the nice lady began to have an allergic reaction to the drugs. After a seizure and some very long and scary minutes, she was okay. Shea and I kept looking at each other waiting to see if Shea was next. Thankfully, the chemo went without incident and we were able to survive the 10 hour day at Huntsman and the hour long drive home. Needless to say, we are still exhausted. We met this morning with the home health care nurse, so we are all up and running on this end of things. The doctors are still worried about her low iron counts and that the fact the chemo makes you so susceptible to things that they are asking that no one comes to visit for the next few days....so we are hunkered in for the battle. Our foxhole is full of movies, blankies and a bunch of nuts (and I'm not talking about the kind you eat) so it should be an interesting and hopefully entertaining couple of days. Thanks to all the wonderful people we have met who are helping to guide us along. We know that you will become great friends of Shea and our family. Once again, thanks for all the kind gifts, gestures, prayers and outpouring of love that we have been the beneficiaries of. We love each of you so very much and you are so appreciated. And...one word of advice....skip the threading.

What a Wonderful World

Okay...so I have to admit it I didn't post yesterday because I truly hit a wall. A big wall. The day started out okay...I took care of a few pressing matters and cruised into work. I was feeling on top of the world...calm inside, full of hope, faith and energy. I even had a 32 oz water bottle with me, full and ready to go...that was a first. In other words, I had the bull by the horns. I made it to my desk, set the bottle down and began to catch up on what the game plan for the day was. That's when I noticed that my water bottle had tipped over and everything on my desk was soaked through. The day went downhill from there. In 11 years of working for the school district, I have never spilled a Diet Coke or a Mountain Dew all over my desk, so I have decided that it was a cosmic-karma kind of thing telling me that water is evil and caffeine is good. So by the time I got home, the wall was looming....aerobics with the young women, and it was staring me in the face, so it was nice that the majority of the family was glued to the TV in Shea's room watching Tron. I knew I could take a fast bath and sneak up into bed before they knew what hit them. That would leave Kelt to take out the dog, get her kenneled, do all the last minute family things and then get Nick into bed without me. I felt a little bit guilty, but not enough to make me stop giggling like a fool when I jumped under the covers and started to sleep. I actually woke up with a smile on my face. Shea went and did a daring thing today...she went and got a new haircut. As soon as I can take a decent picture of it, I will post it so that you can see it. I think it is absolutely adorable and it makes her eyes 'pop'. We will go to the Huntsman tomorrow for some preliminary stuff and then over to the Moran Eye Center for some help there...possibly glasses. For those who don't know, Shea has 3rd cranial nerve palsy which affects her ability to focus her eyes, especially when she is sick and tired (that phrase always reminds me of my mom...."I am sick and tired of blah blah blah...you fill in the blank) So, it all boils down to a little excursion out tomorrow. I hope Mother Nature cooperates and gives us some sunshine!! I have had so many offers to sew for my Shea that I am overwhelmed with your generosity! We are so excited to get them done. We also enjoy reading your posts, even though I am so lazy I haven't responded. I apologize and I will try to do way better. Hopefully, Shea will be able to do the things she wants to do tomorrow. In between DR. visits, she is hoping on finding a new pair of comfy shoes. Isn't that great?!!!! Shoe shopping is amaaazing, but shoe shopping with a daughter is de beeeeest (Nacho Libre accent). I look at my beautiful daughter, the rest of my gorgeous family, friends, co-workers (or co-slackers? nah that's just me haha), the wonderful city I live in, the temple that is being built, the excitement of shoe shopping etc. etc. etc and I think to myself What a Wonderful World (Thank you Louis....I couldn't have sung it any better )

Totally Rad

As you can see, I took a day off...basically because I was boring myself....so thanks to everyone for your nice comments on my blog (your check is in the mail). We are just beginning this cancer road trip and I have noticed something very interesting. There are a plethora of pharmaceuticals involved...and the funny thing about them is that the ones that you get in chemotherapy were positively named by hippies. Let me explain....Shea will be taking three drugs designed specifically for colon cancer. Two of these drugs are just there to help stop nausea and to bind the heavy duty cancer-kicking drug to the cancer cells...they are named some Greek/Latin something that no one can possibly pronounce, much less spell. Which is why I'm not going to try. Now the name of the main drug is called 5-FU. Does that strike anyone else as funny? On top of her regular regimen, she will also be taking a kidney cancer drug called RAD-001. So her chemotherapy consists of "It's totally RAD, so....." well... you fill in the blank. The other thing I've thought about is the fact that everyone wants us to do natural healing. We agree. Shea will be pursuing that road in conjunction with her chemotherapy. We believe that healthy is good, but healthy plus chemo is better. I know that will drive some people crazy, but that is the way Shea has decided to handle things. So....we have decided that in the interest of being healthy, a brownie with medical marijuana just might do the trick (I'm joking, I'm joking. Here is our disclaimer...while some days we may think it would help, we are absolutely sure that it would be against the Word of Wisdom and we really don't want it anyway...but it is something to giggle about when you are talking RADically and 5-FUing). Shea is happy, she is ready to start kicking cancer butt and we are gearing up for the start of putting fun back into the dysfunction. So...calling all seamstresses out there who want to help. We refuse and I mean REFUSE to wear the ugly, awful hospital garb that Huntsman is prepared to so thoughtfully provide. Shea and I have decided to have custom, designer hospital gowns made instead with matching slippers. I have bought the material for the first gown and pair of slippers, but I am looking for a seamstress who is willing to sew them for me (or several seamstresses since the goal is to get three gowns, with two pair of matching drawstring pants and matching slippers) I have the patterns available. So, my Pretty Pretty Princess needs a new gown to attend the Chemo Ball....who will be a Fairy-Godmother? If it's you....you are totally RAD!!!

The CCC

We have noticed that we are members of the CCC. The CCC is the Crazy Cancer Club. You would truly not believe how many members there are in this club. Yet everywhere we go, we meet another card-carrying member. Now, this really isn't the most exciting or fun club to belong to, but if you are a member, you already know it is a club filled with love and instant friendships. We have associated with a 6-year survivor of breast cancer at a movie theater, 5-year survivor of colon cancer in our neighborhood and a family member who just celebrated his 16th year cancer-free, just to name a small few. The really cool thing about the club is that it is filled with optimistic, loving people who are your supporters, family and cheerleading squad all rolled into one. Something else that we have noticed since being inducted into the CCC....it comes with a CCC Posse. This Posse are all the family, friends, co-workers, neighbors and strangers who support us with food, flowers, jokes, hugs, prayers and anything else we can think of that we might need. I never knew just how big our Posse was, but I know that in the past I have surely taken it for granted...so....to the Posse that I love.....I'm SORRY and THANKS for being here. I need to know that you are behind us and with us on this journey, otherwise it would be too hard to just 'saddle up and ride'. I read a beautiful quote today that I wanted to share. It says "Faith is needed to survive. Life is full of obstacles that make it difficult and sometimes seem meaningless, but faith will help you to find support and meaning....There is a reason God didn't make a perfect world--perfection would make our lives meaningless. We would never have the opportunity to grow and appreciate life's little gifts and miracles if everything were already perfect." So here's to the little miracles we have witnessed since this boat ride began.... 1. We were able to meet a friend that Kelton and I worked with the first year we were married...she works in transcription at the Huntsman Hospital and we ran into her in the elevator. 2. A clinical trial opened up for Shea which allowed her another week to get her body strong and ready for chemotherapy. 3. We have the very best team at the Huntsman (thats what we think anyway) working with Shea. We are grateful for the long hours over several years that they put in to hone their craft...what a group of inspiring men and women that they are! 4. Grape juice was found at the center when there was none to be found....grape juice is an awesome miracle in and of itself when that is all you want. 5. The support of friends old and new who have gathered around us and wrapped us in a protective coating of love, hugs, tears and laughter....we can't be beat when we have a force that strong pulling for us! 6. Food, glorious food....and the loving hands that prepared it. 7. Flowers, gift baskets, cards, notes, smiles....and the list goes on and on. 8. The Center's library where I picked up a book called "Crazy Sexy Cancer Tips"...how cool is that? So...Shea is home for the week. We are planning on 'fattening her up' and getting ready for that marathon she is about to start walking in. Her porta-cath is still tender, but she is getting used to the weirdness of it. The stint is doing it's job and so are the pain killers--yea! We are truly enjoying and noticing life's little gifta and miracles. We feel very blessed to be members of the CCC. The growth we have experienced couldn't happen any other way.

Smile

We headed to the Huntsman Cancer Center for our first date with chemotherapy early this morning on a beautiful Utah spring day...in other words, the sky was overcast and dreary and the snow was already falling down. Shea snuggled up with her blankie into the back seat of the car and quietly rested while Kelton navigated through the early morning traffic. As we got closer to our destination, my stomach began to turn and thoughts were flying wildly through my mind. Each mile seemed to bring me closer to panic. Kelt urged off I-15 onto 4th South and standing on the corner in the snow was a man holding a hand-made cardboard sign. It said "Smile". Heavenly Father always knows what I need. I determined right there to just smile. For me, it has set the tone for the entire day. What a difference a smile can make!
When we arrived at the center, we were told that a great research study had opened up the night before. It is using drugs that are proven to be effective for kidney cancer and they believe that it can help in colon cancer as well. We feel so good about being a part of this study. Because she will be a part of the study, chemotherapy won't start until next Friday. However since she is part of the study, we are spending the night at the Huntsman again tonight. We wish we had planned and packed for an overnight stay, but they are helping us out with toothbrushes, combs and Johnson baby wash, so it's all good.
To help her digestive tract stay happy, she is getting milk and molasses enemas. I have to admit I have never considered pairing those two ingredients together for anything other than cookies...what a learning experience this is cracking up to be (no pun intended haha).
We were happy to have two visits from Dr. Eye Candy today, eat a good meal of salads and sweet potato fries, and watch a year's worth of Say Yes To The Dress.
Kind of a boring, relaxed day....kind of a boring post......and I just can't seem to stop smiling:)

It's a Beautiful Day!!

Okay, I wrote yesterday and I learned a few things. I learned that I need grammar and spell check badly!! Apparently, I can't do that very well on my own. The other thing I learned is that I ramble....so there it is ....I ramble. I also don't think to explain the things that are in my heart and mind very well, so I am going to clear up a question or two before I write about the happenings and thoughts of the day. I had several people ask me how the name of the blog came to be. For me, it is a story of preparation by the Lord. I have been focusing my studies on the New Testament for the last couple of years. I have really tried to ponder and think about even the little things. Around Christmas time I was reading the account of the apostles in the boat when the wind and the waves began to buffet them around. (Matthew14:22-33, John 6:16-21) It was dark and the water was pretty restless and right in the middle of that confusion, Jesus appeared. At first they were frightened, but Jesus called out and told them not to fear. Then Peter essentially said, 'if it is You, then ask me to walk to You'. Now here is the interesting part to me that I have spent alot of time thinking about. Jesus told him to walk and Peter stepped out of the boat. Then he realized just how many waves there were, that is was dark out so he couldn't see really well and he probably realized "Holy cow! I'm standing on top of some really deep water!" And then he sank. Of course he had the presence of mind to call out to Jesus who immediately stretched out his hand, got him back up out of the water and then got him safely back in the boat. When Shea was diagnosed, into my mind flashed the image of both of us in a boat. Those cancer waves were already buffeting the sides of my little boat of happiness. It was pretty dark all around me, and quite frankly, I was the one who on the inside was screaming and freaking out and generally adding to all of the commotion. Then I saw Shea look out over the boat (which to me kind of represents the life that we were comfortably floating around in), step out onto the waves and start to tentatively walk. Now the really cool thing to me about Peter is the fact that he didn't fail. Alot of people look at him and say essentially "What a nut! He thought he could do something only Jesus could do and then Jesus had to bail him out". I think Peter was successful!! He got out of the boat and he walked! Mission accomplished!! It wasn't until he let all of the other stuff around him get in his way that he began to let it overtake him. And even at that, he was smart enough to call out to the Lord because he knew He was there and He could help him get back up on top of things and carry on like before. Sure Peter was a little wet, and maybe a little cold...but he had learned a whole lot about himself and his Savior in the process, so I think it was worth it to him in the end. So there you have it...Shea has stepped away from the life she knew before, and I'm the chicken still back in the boat...part of me cheering her on and the other part helplessly watching and waiting, but knowing that the Savior is out there and he has already stretched forth his hand to her to lead her down the path he has planned for her all along. Okay, which brings me to what I really want to talk about today. The first things you notice when someone you love is diagnosed with cancer, is that everyone loves to throw numbers at you; 20% this, 6% chance of that, 80% have this etc. etc. etc. Now anyone who knows me knows I will never be a rocket scientist...that takes too much math. And the only reason I even was able to obtain my degree was because I had a teacher from Taiwan who took pity (and I mean PITY) on me and allowed me to pass math 1050 with the lowest possible passing grade necessary even through I didn't earn it. (sorry to all of you who actually worked for that grade). And then there was the off campus Statistics class that I sat in a room by myself and watched an instructor teach over a video chat line. It was graded on a curve, and I only passed that class because the rest of the class members were in the state prison at the point of the mountain. I'm eternally grateful for those men who made me look good. So essentially....I suck at math and statistics. But one thing I learned from those classes is sometimes 2+2 doesn't always equal 4.....and every statistic can be skewed. So for all the number lovers out there...we aren't listening!! I don't care what you tell me about Shea's chances....you haven't watched her dig her heels in when she's wanted something. Ask her family...we watched Winnie the Pooh two times a day (at least) for an entire year because we didn't have a choice. Don't tell us the percentages of those who can't accomplish something....I watched Shea as a baby work for over an hour to move a chair into place so that she could get on the counter, climb on top of the fridge where she knew the cookies were kept and smile smugly down at me while she ate them. And believe me when I say she has faced tough, hard and uncomfortable things in life and she always comes out on top. I can't imagine her doing anything different this go around. So to prove my point, today Shea has had a great day. Color back in her cheeks and her appetite has been good. She and Kelt and I went for a little drive and ended up at Call's drive-in for some fries and onion rings. Life is truly good! We are off to the Huntsman in the morning for our first round of chemotherapy. It will be interesting to learn something new. I will be packing blankies, snacks and card games to make the day go by sweeter. Thanks again for all of your thoughts and prayers. They are powerful enough that we can feel them and we see and appreciate so many miracles each day. So many people are asking what they can do to help and at this point we really don't know. We are barely starting in to this, so we are unsure of what exactly we will need. I guess what I need is a wife...LOL. So.... I guess help us look at the magic in our lives. Go outside and look at how many colors are in each leaf of every tree. Isn't that amazing? It is truly a beautiful day!

"One doesn't discover new lands without consenting to lose sight of the shore for a very long time" Andre Gide (1869-1951)

This blog site will hopfully serve three purposes: First: I will use it as a tool to keep everyone informed and up-to-date on Shea's journey with cancer. Second: It will give her a way to express her ideas and feelings when she has the energy and/or desire to do so Third: It will be a way for me to express some of the good and bad experiences that we have and will encounter along the way as we watch Shea walk on water. People tell me this will be liberating...I hope they are right. The idea for the name of the post came as we read the quote from Andre Gide. It also perfectly describes what I have watched Shea do from the time that she first heard that she has cancer. Several of her doctors, nurses and care people that she has come in contact with all remark that they are amazed at the quiet dignity, calmness and optimism that radiates from her. Watching her, you can see that she has turned her face fully toward the Lord and has unhesitatingly stepped from the boat of safety and ordinariness (is that even a word?) and is walking whatever path He has chosen for her to walk. I am still left inside the boat, struggling to contain my hopes, fears and anxieties. Sometimes I feel like I have found my sea legs, and at other times I'm fairly sure I'm going to drown. I'm going to start with the sequence of events. Shea called me and asked if I could go with her to the doctor on Tueday the 29th of March. She had been seeing a doctor previously who had become concerned about her and had scheduled a sigmoidoscopy. I left work early on Tuesday afternoon and had made plans to accompany Shea to the doctor visit followed by a dinner out and maybe some shopping. Shea had just been taken back for the procedure and I started to leaf through a magazine when the doctor was suddenly kneeling before me. He asked if I was "Mom" and invited me back to watch, under the condition that I sit far away in case I became light headed or passed out. Obviously, he didn't know me very well. It only took a minute before I was supporting Shea's back and trying to stop my mind from spinning. Having a degree that has a bit of a medical background can be a good thing. Having a degree that has a bit of a medical background can also be a bad thing. I didn't need Shea's doctor to tell me she had cancer. It was fairly obvious. I was terrified that she was or wasn't processing the information he was giving her. She was responding as if she understood, but I didn't see it registering. I was scared for her to ever 'wake up' and realize the news, and I didn't know how I was ever going to tell Kelton that his oldest baby girl had colon cancer. My knees began to shake when the doctor smoothed back her hair at one point and called her a "sweet angel". After several pictures and around 20 biopsies, we were done and placed in the recovery room. I took a moment to sneak into the deserted waiting room to place a call to Kelt. It was one of the most difficult things I have ever had to do. Shea was resting comfortably and had just been given something to drink when the doctor came back in with the pictures from the scope. He very compassionately talked to her about his fears and that he thought that she had cancer. Shea stayed focused on his face, smiled and said thank you. I battled back tears as I realized that her hands were clenched tight and she was 'white knuckling it'. We were told that we would need to go to the hospital in the morning for a CT scan, and so Shea was told to not eat anything that night. The next day, we went to radiology for the wonderful CT scan. Shea was given a lovely concoction that we called "cat crap kool-aid", basically because it looked by kool-aid, but tasted about as appetizing as cat crap sounds. After the scan, we were told that the Dr.'s office would be contacting us shortly. the call came and we were advised to go home, pack and wait for the phone call that would head us to the University of Utah Medical Center. We hadn't even left Logan before the call came. We rushed to the house to pack and I took a moment to grab Nick to let him know that I wouldn't be staying at home that night, but would be going with Shea to the hospital. He knew the severity of the situation, but he looked up at me and said "Do you believe what you tell me?". I said "What do you mean?" He said, "You say Heaven is good. So the way I look at it is if you are right, then if Shea goes to Heaven that is good. And if Shea stays with us that is good, too. So if you believe what you say, then no matter what, it is all good." I had to take a split second to evaluate if I believed what I had said. I realized that I did, and ever since, a sweet, calm feeling has been in my heart. I cry when Shea is hurting, or when I see one of the other children's uncertainty, but I do know that whatever path the Lord has planned for our family, it is all good. When we arrived at the University of Utah, we were told that a stint would be placed in her bowel to avoid an obstruction. We were also told that the cancer had spread to her liver. Once again I felt the ground shift beneath me. We went to bed and tried to get some rest to face the next day. The next day found us preparing for a move to the Huntsman Cancer Center. This is like moving from a regular hospital room to a four-star hotel with really crappy beds. It had the added benefit of having several really good-looking men around. Jenessa commented that it must be a pre-requisite for working there. I had a friend tell me that the dermatology ward isn't so lucky, but we are here to tell you that the 5th floor at the Huntsman is looking mighty fine. Surgery to place the stint went well, and so after 4 days without food or drink, Shea was allowed to eat. More tests revealed that the cancer was starting in her lungs, so chemo needed to be the first line of defense. Shea had a power-port catheter placed in her chest on Monday to facilitate the chemotherapy infusions. She begins chemotherapy this Friday. The doctors tell us that we won't be able to have visitors on Friday, Saturday or Sunday so I guess we will be stuck with just the nuts that live here...that should be interesting. We had someone who has watched a loved one struggle with cancer say to us "I don't want to tell you about our journey. We have our journey, but you will have yours. I can only tell you that this journey will drag you through hell, will place you high on mountaintops and everything in between, but I promise you that you will be stronger and better for it". So....we are now members of "The Cancer Family". It's a highly dysfunctional family, but we are part of it and we are damned (sorry Bishop) determined to put as much 'fun' into that dysfunction as we can. We are ever grateful for your thoughts, prayers and multiple acts of kindness. They support each and every one of us every second of every day. We love each and every one of you. Thank you seems so insignificant...but, THANK YOU.