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.