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)