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.