Tuesday, August 31, 2010

Feeling Better--HOORAY!

Today has been a good day. I have felt well, I have been able to work out, I have had 2 naps (note--that is one more than my sister, Kathy, has had), and I've even gotten some things done. It is wonderful to feel better--I know it probably won't last, but it's been nice. I have also found that I am getting a ton of service that I probably don't deserve...but we are thankful for it. My sister and a friend from our ward have done ironing for me. WOW--Spence says he's never seen so much of our ironing done. :) I also haven't done cooking for a while--I am getting spoiled. I guess there IS compensation for having cancer. You are all making my life easy for me. Thanks so much. :)I feel like a bum. However, I do have some opportunities that the rest of you don't have--I get to lie under a moving machine every morning that zaps me with radiation from all different angles. That zapping machine is going to make me better. I also get to work out with other people who have heroically met the challenge of cancer, and are working to beat it. The people who give me radiation are becoming my friends--they are positive and encouraging, and I am thankful for their daily cheerleading. They even oohed and aahed over the family pictures that I brought to show them this morning. That scores big in my book!

Well,take care of yourselves, and know that you are loved. Our Father in Heaven loves all of us...and He hurts when we hurt. I am thankful to know that I am His daughter, and that He knows the things I am dealing with. Have a great Wednesday!

Monday, August 30, 2010

Another day at the Piper Cancer Center

This has not been a very eventful day--round 2 of radiation. The radiation technicians told me that i looked TIRED...which always makes you feel tired. I had lost 3 pounds, which is not good in my state--however, the real problem is that they weigh me in different clothes,therefore I'm going to weigh differently. It also makes a big difference that I was wearing tennis shoes one day and was barefoot today. So it's not quite as bad as they think it is. I met with the radiologist oncologist who is super nice, and with her nurse. I went up to work out, but I wasn't feeling so well today, and I had time limits, so I only worked out for about 20 minutes.
My sister, kathy, flew in today from California, and it's been nice to have her here. She is pretty easy to have around--and she is a napper like me, so if I am tired, she is very accommodating, and joins me in a nap! We went for a short walk, and she helped with dinner, and it's just nice to have her here.
I appreciate all the suggestions of things to do--I hope to have some goals and get some things done each day--they may not be much, but hopefully I'll do something. I finished a book today--very light reading, but fun. I DO hope my niece, Melanie, will come over and make me laugh during one of my treatments--she can make me laugh almost better than anyone. I am going to look up some of these books/talks on CD, and listen to those. So, thanks to everyone, who gave me different suggestions. :)

One of the things that you really realize during a time like this is that life goes on...even if yours has pretty much stopped for you. Homework still needs to be done, life can still be traumatic, and feelings get hurt. I guess it really is a blessing that life does go on, and that there's some normalcy when your world kind of turns upside down. I had some visitors today, and that was really nice--people are the greatest kinds of blessings we can have. Thanks to all of you for caring, for calling, for emailing, and for just keeping me in your thoughts. I love you all, Louise

Sunday, August 29, 2010

Done with Round 1

Hello everyone. What a weekend this has been. It was wonderful to see so many friends and loved ones at church. I was able to stay at church for the whole 3 hours, and that was great. We had great lessons, and even though I was wiped out when I was finished, I'm glad I could stay. I found out that I got a little weak if I stood for too long, but I was all right sitting down.

Yesterday was a rough day for me. I guess I got the delayed-reaction effects of chemo. I just felt kind of yucky all day long. I laid around most of the day, although I was able to get some of the wash done. Nothing gets done very fast these days...but we DO have clean sheets! I didn't feel like eating at all, and taking any kind of medication is just not easy. I think I am definitely a "rebel eater." The thought of putting anything in my mouth and trying to swallow it, is really difficult for me. I am thankful for the feeding tube, because when I don't feel like eating anything, at least I'm getting some nutrition in me. Spence wins the prize as great caregiver of the world. He is so patient and caring to me all the time. He is so aware of me all during the night, and is ready to help me in any way he can. He continues to make me feel so loved. It's funny how the "little things" really mean the most. Last night I kind of fell apart at dinner. Brady immediately got up from his chair, and came over to give me hugs and a back rub. WOW--did that make me feel good! Kelsey is always checking in with me, to make sure if I'm eating anything or how I'm feeling. She is such a sweetheart.

I am trying to think of ways to combat the feelings when I feel yucky--and suggestions would be welcome. I have always loved music, and get a lot of comfort from that--sometimes I need spiritually uplifting music, and sometimes I need fun music like "Wicked," or other Broadway shows...or jazz, which reminds me of my mom and dad. I like to read, but when you aren't feeling good, sometimes it's hard to concentrate on that. Anyway, if you have any ideas that have worked for you, please send them on. Thanks for all your kind thoughts, posts, and fun words. I hope you know each and every day that I love you...and am so thankful for all of you. Tomorrow is the beginning of the second week of treatments--one week down! HOORAY!! Love you lots, Louise

Thursday, August 26, 2010

YIKES--the first day of CHEMO!

All right, guys--here is the deal. I have very funny kids who write fun things on this blog. I am not funny like they are--but I check my entries, and very few people comment on my entries.I know they are pretty boring, but I am feeling slightly overlooked!! So please every once in a while, at least acknowledge that I wrote something. I am sure my tumor would shrink more if it felt like I was being noticed! Just a little something to prick your consciences, and make me feel like someone is reading my entries too. Just a little note for those of you who do comment--you are the best!! :) Support your local blog writers!

Well, today was the BIG day. I started chemo. I was a little worried because for the first time last night I was woken up by my chest pains. We wondered what that meant (and always go with the worst-case scenario!) However, the physician's assistant who works with our main doctor (and is about our favorite person that we work with) wasn't worried, and was very reassuring. She also gave me some stronger narcotics to deal with the pain. I will take them tonight, but I have felt practically no pain since she gave me some Tylenol this morning. WE were there in the hospital till almost 2:30 (starting at 8:30 this morning), but it went all right. First they gave me two different painkillers and anti-nausea medicine. One of the medicines they gave me was benadryl. The chemo lady, Sue, told me that I might get a little loopy or I might get a little nauseous from it...or I could just give in to it, and go to sleep. I took option #3 and was out for quite a while. Katie came partway through the treatment, and I told her that I knew I was going to sleep so she might as well just go home. Spence was there for a good part of the treatment also. They have been so understanding at work, and tell him that he can be with me at any time. His favorite part of the whole morning was when I was first brought into the doctor's office by a nurse who was going to take my blood. ANd she asked me which arm I could give blood out of. She looked at my left arm (where the PICC is) and said, "Oh, I guess I should use your right arm." And I totally went along with her. It was only when Spence pointed out that the reason I had the PICC line was so that I could give blood without being poked. Aren't we smart? I was only in the hospital overnight last week to make that possible. Thank heavens we have Spence to help us see the right way--otherwise, we would be lost!
I slept this afternoon for about an hour, but then have been pretty energetic since then. The effects may hit me tomorrow or Saturday, but I really can't complain about how the day went. ALso, BIG NEWS--I don't have to give up aloe vera juice. Katie found some that is flavored, and it is much more tolerable. I may be able to drink this stuff after all.

Today was a much more important day than the first day of our therapy--it was the one-year-old birthday of our one and only fabulous grandson, Logan! What an eventful year this has been for all of us. Take care. I love you, Louise

Watch out for flying boogers!

Hey ya'll Katie here.

First off I would like to thank all of you for the support you have offered my family, and most importantly my mother. Please do not be afraid to keep the emails and phone calls coming.

Things are going really well on the home front. Mom is amazing me at how positive and strong she is being. I know that this strength is a direct response to the hundreds of prayers and good thoughts being sent our way so please keep 'em coming. I know that this cancer is something we can beat as a family.

Today was the first day of chemo and mom took it like all the other more "mature" (old) people in the chemo room, asleep. I had to go to the dentist at 9 to get some work done and when I got to the hospital around 10:15 mom was drowsy from the benadryl and fell right asleep. Then dad arrived and took her home so i could whisk Kelsey to work at the good old DQ.

I was glad that it wasn't too hard on her and she didn't have a reaction to the chemotherapy drugs they administered. I think this was the most dreaded day of the whole process, and I m glad it is done and over with. Now we just need to make sure mom isn't exposed to any sort of sick people so please keep your boogers and other bodily fluids to yourself. Or as the chemo nurse sue said "Watch out for flying boogers!"

We also got some pain medication for the chest pain that my mom has been experiencing and I hope that helps! Now all we need is some chill pills to keep my dad from worrying to much.
However, it really has been amazing to watch my parents support and love each other so much. I am not sure if this has already been recorded, but at the beginning of this journey my father said that after loving someone for as many years as he has loved Louise, you are willing to do anything for that person. I am so glad that my family is an eternal one and they my parents can continue growing and loving each other in this life (for many many more years), and in the life to come!

We have already gone wig shopping and mom looked so funny in some of the wigs we tried one, this one is my favorite! brings us back to her hippie days!!

I have to head back to Utah to start school on Saturday I am not excited to leave but I know that all of you and the Lord will be a good eye on my mom and make sure she eats, the house is clean, she remains cheerful, and wraps her bandages when she showers, oh and most importantly MOM!!! DRINK YOUR ALOE VERA and I know it's gross but I know it will help!

Thanks to all those who have posted puffs!!!

Let me know if i have missed any! Or if more come!

Keep puffing!!!!

Wednesday, August 25, 2010

Halfway through the First Week!

Last night Spence wrote a very thorough description of what is going on. I hope if you have any questions, you'll ask. I'll be sure to ask him and then he'll answer. :) Today was a tough day, not because I felt any more pain or treatments are getting worse--just because I had a melt-down about this whole thing. Sometimes it just hits me (that I am REALLY going through this), and I kind of fall apart. You are all so encouraging--but still it is surreal to me.

I had my 3rd treatment today. Still the radiation is going all right. I am tired, but again I'm not sure that that is related to the treatments or if I'm just pampering myself. I do take it easier, just so that I can have energy to do what I need to do. (actually at times like this you realize that there is very little you really HAVE to do). I tried to do some work around the house today, but would rest in between doing things. I have 3 very protective sisters who want to make sure that I am taking care of myself. Instead of having my mother around, I have these great sisters who "mother" me a lot. :)

I got to officially sign up for an exercise program, and worked with the cancer personal trainer (only way I would probably ever get a personal trainer!) to set up a program. He just had me get on some different machines--a treadmill, a bicycle, and then a machine that works both your arms and legs (not an elliptical). I also did some step-up things, and some squats. I worked out for almost 45 minutes, and it felt great. I get so hot when I exercise, but he is quick to position the fan so it blows on me just right. Tomorrow I'll be there for a long time because of the chemo (could be 3 or 4 hours), and so I won't work out probably on the chemo day...but other days I will.

I have some terrible eating habits. I still try to eat things that are solid...just to get some variation of tastes in my mouth. Today Kelsey made cinnamon rolls, and I was determined to get one of those down. Little by little (eensy, teensy bites) along with water to wash them down, I DID eat the whole thing. I still am taking the gag-me-royal aloe vera juice. I truly do hate it. I try to take it in the morning so I don't have to think about it for the rest of the day...but like today it is almost 9:00, and I haven't taken it. I will have nightmares if I take it don't tell my nutritionist that I didn't take it. If I suffer through a burning throat with an inability to swallow, we'll blame it all on the fact that it is so hard to take aloe vera juice.

I also am having to eat many of the mothering words. One thing I coudln't stand as my kids were growing up, was BURPING. I hated it--I thought it was rude and obnoxious, and VERY poor manners. Now, because I have this feeding tube, and a very narrow passageway in my esophagus (at some places I have NO passageway), I burp all the time. I make myself sick. My kids laugh and tell me I'm a big hypocrite for not practicing what I've always preached. I'm sure there are many more times I will eat my words and do things that have always disgusted me. There is no justice in this at all.

Well, friends, loved ones, etc. I DO love you all. Thanks for keeping up with my blog, and for writing me...and for keeping in touch. I know I'm not in this alone--what a blessing that is!! Good Thursdays to you all, Louise

Tuesday, August 24, 2010

The Plan of Attack

Many of you have wondered what exactly we are doing to fight this esophageal cancer and why we have taken the approach we have. As Louise is beginning the radiation and chemo, this week, I thought I would describe in more detail what is going to take place. As you know, we have met several times with the medical oncologist, Dr. Patrick Donovan, the radiation oncologist, Dr. Diane Recine and several members of their staff, including a nutritionist. They have put together a plan that they feel will be the most effective for fighting this type of cancer.

The general plan is that they will administer radiation therapy called intensity modulated radiation from a large machine called a linear accelerator also called Novalis. At least thats what I think they said (our nephew Jaymeson Stroud could probably describe it better). Louise will receive treatment Monday through Friday each week for about 6 weeks depending on how she responds to it. They could give her a one or two week "boost" after that. They mapped out the exact area of the tumor and affected nodes and the specified margins around the affected area with a pet scan and a cat scan. Someway they fused these scans with their computer programs and they know precisely 3-D where to shoot the radiation beam. I watched them from their "control center" the first day and they walked me through each step along the way. They had 5 screens that they were working from, one of which was videoing Louise under the machine. The machine shot the beam from many different angles to the target. Since it was all pre-programmed, they pushed the right buttons and the radiation hit the exact target from many angles. It was interesting how, when the beam might hit some tissue from adjacent organs, it would stop shooting until it rotated to the correct cancer cells. The radiation is very accurate which minimizes the chances of damaging the wrong tissues. The whole process only took about 10 minutes. She will go through the same procedure each day. The cumulative effect of the radiation increases each day. It is like you get a sunburn on top of yesterday's sunburn each day.

Dr. Racine felt like the tumor might shrink within two weeks of radiation to a size that might allow her to even eat solids again. As you know she eats only liquids now and about 80% of her liquid intake is through her food tube directly into her stomach. The radiation might also irritate the esophagus enough that it might hurt too much to eat. We shall see.

During the same 6 weeks of radiation therapy, Louise will have chemotherapy, once a week for those 6 weeks. She will be receiving two types of chemo called Taxol and Carboplatin. One or both of them are supposed to enhance the radiation in the cancer tissues. The effects of the radiation last longer with these chemicals. The radiation also makes it easier for the chemo to attack the cancer cells and kill them. Of course, as most of you know the chemo goes after faster dividing cells in the body which is what cancer cells do. Hair cells also divide quickly and that is why she will probably lose her hair.

After 6 weeks of the radiation and chemotherapy, they will stop giving her all radiation and chemo so her body can heal and her immune system can strenghen and attack the other cancer cells which might be in her system. After the 6 weeks of therapy and 6 weeks off, they will again do the pet and cat scans and see what has happened. Dr. Donovan said, with this type of cancer, about 1/3 of the time they find that the radiation and chemo are completely effective. The tumor is gone and there is no evidence of cancer in the body. With this situation she would not have to have any surgery. (This is our pick for sure). 1/3 of the time the tumor will be much smaller but it will be necessary to operate and remove it. They would take the upper part of the stomach and part of the esophagus. They would either just pull the stomach and reconnect it to the upper part of the esophagus or would use part of the intestine to become part of the esophagus. This alternative might also bring about a cure. The third situation would be that the cancer would have spread and there wouldn't be the necessity to have any surgery.

Sunday Louise and I spoke with a very dear friend of ours, John Shaw, who was my brother Ron's radiation oncologist. I give him credit for helping to extend Ron's life another 4 years. Anyway, he knew our doctors very well and knew the facilities and machinery that we are using. Dr. Racine was a past partner of his. He said that we could not find better doctors or facilities at Mayo, Huntsman in SLC or Anderson in Texas. So, we were very encouraged. Dr. Shaw told us that our plan was exactly right for this type of cancer and was optomistic for the results.

Louise has been a real trooper with all of this. She has a lot of courage and is ready to go through what she must to get better. She has endured a lot already with the inability to swallow food for the last 3 months. Though she has lost 22 pounds at this point she has now stabilized her weight by making sure she eats right and keeps her calorie intake high. She has a positive attitude and has also endured the constant pain in her chest very well. All of your acts of love and prayer has made such a difference to her. She is overwhelmed by all of your friendship and love and encouragement. Thanks so much to all of you. I hope this overview of what she will go through in the next 3 months, will give you a better feel for what is happening.

My best to all of you, Spence

Monday, August 23, 2010

Beginning of radiation

This will be just a quick post tonight. Spence is going to give you more of the medical details tomorrow, but I know you know that I started radiation today so I wanted to let you know how it all went. Everything went fine. It was quick--about 15 minutes, and really didn't bother me at all. I'm sure that after a while, all of these treatments will get to me, but today it was easy and didn't affect me at all. They lay me on a "bed" (not really--just a place for me to lay my head, and lie down on--then they put a cushion under my knees.) I just laid very still, as they had this machine that would just go at different angles around me, and radiate me several different times. I could tell they were radiating by the buzzing sound, but I felt nothing. Whenever you have to lie very still, of course, your nose itches, or something bothers you because you know you can't move. Spence watched them do the whole procedure. I had a busy day after that, and will take it a little easier tomorrow. That's our latest news.

Sunday, August 22, 2010

"Puff For Cancer!"

I thought I would add something to this since I haven't yet. You all know about the super nasty stuff my mom has to go through right now. She is so strong and so positive about everything! If I was going through cancer, I would be a huge mess. But she is not.

Personally I would like to thank everyone who has done anything for my mom and for my family. The meals that have been brought in have been fabulous, the flowers beautiful, and the cookies delicious!! Even phone calls and dropping by means so much. If your reading this and keeping up on this blog, that's even something that we appreciate!! And the prayers, thank goodness for all of you praying. We can feel the love!

Anyway, I didn't want to drone on and on about the sad stuff relating to my mom. Rather, let's talk about some fun stuff that has been happening! My sister, Katie, and brother, Brian have been in town this past week and it has been so much fun. They keep my mom laughing and feeling good. Saturday, (yesterday), Mom, Katie, Brian, Brady and I went to Cafe Rio with some of our cousins. We had a blast laughing and enjoying everyone. It was fun to see my cousin Lexi, who we hadn't seen in a very long time and her beautiful little baby girl Abby.

My mom drinks this delicious stuff called Ensure (which gets really old after drinking it every day three times a day, by the way). She had to drink that while we all ate our Mexican food. She proceeded to throw it all over Melanie because she was mad that we had delicious food and she just had to drink that yummy yummy stuff (NOT!)

Oh Mom, the things you will do to eat our food. But really, how lame is it that she can't eat anything solid? I think I would cry.

After we had finished our lunch, we were just sitting around talking (and laughing of course). Some of you may know this and to some this may come as a shock. My mom cannot puff up her cheeks. If you think I'm kidding, just ask her to do it :)

My cousins Lexi and Melanie decided on a new little phrase for Mom. "Puff for Cancer!!" They are going to make shirts with that on the front and something about Ensure on the back. Mel, you'll have to remind me exactly what it is. We realize the the saying "Puff for Cancer" may not be the best choice of words...but now you'll know what it really means.

Would you "puff" for cancer? No, not that puff, silly. You know, puff up your cheeks? Do it, because that's what all the cool kids are doing. We all love Louise and are doing our best to make her smile.

Right now my mom just needs to smile, so share your funny stories you remember about her or have had with her. She would LOVE it. And remember, PUFF FOR CANCER!!

The eve before Radiation

Today was a good day. I love going to Church, and for the uplift I feel there. I am thankful for the hymns--I think that music can express our feelings better than just about anything else. I am thankful to be with friends and with my family. This Sunday was a lot better than last Sunday. Last Sunday everyone just felt sad for me, and had long faces. This Sunday was much more normal--people teased me about different things and I felt just like ME again. I don't want to make people feel bad, but I DO love to be with them, and to just joke around with them. I appreciated their encouragement as they know that I start treatments tomorrow. I just loved being there.
I also took my son, Brian, to the airport today. He went back to Redding, California, where he lives. It was great to have him here. He was such a support to me...and gave me the many hugs I crave every day. (We wondered if I get hugged enough, do you think we could pop the cancer right out of my esophagus--I think it sounds good, but I'm not sure it's a medically sound cure). It is so good to have my children near. I love them, and am so thankful for them.

I have heard from many people--some I haven't heard from in a very long time. I am totally amazed at their care and love. So, if you have someone that you haven't talked to in a long time, call them, write them, email them, whatever, but let them know you love them. There is nothing better you could do for them.

OK--Tonight we had the most wonderful experience. We have had this friend for a long time. His name is John Shaw, and he also is a radiologist oncologist, or as he has always called himself, a "cancer zapper!" He was instrumental in prolonging the life of Spence's brother, Ron, when he had colon cancer. He talked to us for nearly an hour tonight about all the procedures we're going to do, and he totally validated all that we're doing. That was so nice to hear from another professional. We have felt good about working with the Pyper Center and with all the people we have met. He just made us feel that way all over again. So, on to tomorrow. You all have a good day--I'm planning on having one too.

By the way, read Kelsey's post--it is totally awesome, and made me laugh out loud!

Friday, August 20, 2010

Eating is no longer fun

The clock is running out. I just have two more days before I start my treatments. I don't do well with waiting, and just would like to get things started...and then over with. I actually would almost rather hide in a cave somewhere, but I guess that isn't possible. (they would miss me at the cancer center).

I'm going to tell you a little about eating today. Eating used to be one of my favorite activities--I have become so boring and so unfun. I had yogurt today and could eat about 3 bites--then I get tired of trying and I'm really not hungry anymore. My family watches me like hawks, to make sure I don't eat anything that I could choke on. Spence brought me some little hors d'oeuvres things from his company's seminar today...and I LOVED those. If I chew really well, and drink plenty of water, I can eat some solid food. Everything has to be watered down so it's not too thick for me for get down. I do feel like my swallowing has gotten worse. To top it off, I need to drink aloe vera juice every day. I really don't like the taste of that. One of the nurses at Piper (cancer center) told me if I sipped it through a straw, it would bypass my taste buds...and would go down easier. NOT!!! That was a lie--it tasted just as nasty to me--absolutely no difference. I would like to put it in my feeding tube, but that would defeat the purpose for it...which is to coat my throat. I still like chocolate Ensure, but trying to get the prescribed amount of calories down is hard. Can you believe I think that's a PROBLEM? Who wouldn't love to be FORCED to eat more? Counting calories to get MORE is pretty weird.

I went to see the radiologist today. He put me under this machine (I have no idea what machines they are using on me), to take a picture of me again...and make sure that the marks on me (where to radiate) were in synch with the program that they had done earlier this week. After taking some pictures, he would take them into the radiologist and show them to her. She adjusted them a couple of different they would match their program perfectly. I am thankful they are trying to be so precise. HOpefully it works. :) I start radiation on Monday morning at 8:30. Then chemo starts on Thursday at 9:00. wow--it all still feels so surreal. YOu all have a great weekend...and we'll have more updates for you next week.

Thursday, August 19, 2010

No Doctors--No News!

Hello everyone! I'm not sure what to write today, since today I have done NOTHING. Well, that's not totally true--I went out to lunch with my son, Brian, and a good friend. I also went on a very short walk with my dog--by the way he and I are totally exhausted by the end, you would think we went long distances...but we just both love to nap, I guess.

I am still experimenting with my feeding tube. Yesterday, I started worrying that I wsn't getting enough I decided to drink a lot more water today. That usually is never a problem for me, but since swallowing has gotten a little harder, it is not my first choice for an activity. SO I took my feeding tube, flushed it out with a large cup of water (of course that is flushing me out as well as the tube), then added the not-so-yummy Carnation Instant Breakfast (it would be easier to drink if it were chocolate, but it's not), with water halfway through and then more water at the end. I put a TON of water in there. After barely making it through (and this was just through my feeding tube), I came and laid my head on the kitchen table. My son was worried about me--but I was just so terribly full and felt like that girl in the old "Willy WOnka and the Chocolate Factory" movie who was purple and got blown up so big. I felt THAT grotesque! Needless to say, I ruined the whole purpose for drinking which was to have more water in me...and have felt full the rest of the day.

Tomorrow I meet with the radiologist, to make sure my radiation "map" is accurate. We saw the chemo room where I'll have chemo (that was a couple of days ago), and it looked pretty comfortable--several easy chairs, places for you to hook up DVDs, laptops, etc. I think it will all become more real to me when I start on Monday.

We have gotten lots of cookies and desserts. WHY are we getting yummy stuff like that when I can't eat them? I am the dessert eater around here. My kids will have it one time, but it is my job to pick at it and eat it the rest of the day. They leave and go off to school, or just don't feed at the trough like I do--so who's going to eat all those great things? We have been brought a ton of food--our frig is so full that you can hardly open it. I need to open it up and bring some homeless people in here and feed them. People are way too generous!!

I am feeling some pain both in my chest and back. Of course, now that I know I have a tumor, I think I feel the pain more--just because I'm aware of it. I used to think it was just the normal aches and pains of getting old (and it probably is), but now I have something to blame it on. We don't like this tumor--the plan is to get it out COMPLETELY. Thanks for joining our fight to totally eradicate (big word, huh?) that dreaded word--CANCER. Love to you all, Louise

Wednesday, August 18, 2010

Let Go...and Let God

Last night I was just on my way out of the grocery store, when I saw a friend who had just found out my news. She, of course, wanted to hear more, and we talked about my experience. It was a very tender conversation, and of course, it turned to faith and the power of God. With all we are trying to do, we still need to do like she said, "Let go...and Let God." It was so nice to visit with her--suddenly the really important things in life DO become the most least, for a while.

Well, I'm sure you're all waiting to hear about MORE doctor's appointments. I went to 3 yesterday...and by the end I was totally wiped out. The last appointment was with the chemo nurse. She had so much information to give out, that it was just she talked REALLY fast. She had a ton of stuff for me to read. It is scary to hear all the possible side effects of chemo and the medicines you'll have to take, and trying to keep it all straight in your mind. She could tell she was overwhelming me so she said she would hurry and finish. That meant she talked for practically another hour--2 hours of hearing about chemo effects, yucky medicines to take, and things that I felt like I had to remember. I broke down after that, wondering how I am ever going to do this...then it was time for family hugs, and reassurances from my kids and Spence that yes, I COULD do this. I even have recovered enough this morning to actually READ some of that stuff about chemo. She showed us the room where I will have chemo--they make it as comfortable as possible, with easy chairs, and places to plug in your laptops or DVD players or Ipods...or whatever. This nurse, Sue, was also funny--I love having these people with humor. You'd HAVE to have a sense of humor or you wouldn't survive working with all those cancer patients.

I also had my PICC line put in--I could tell you what those initials stand for...but you would never remember anyway! It is a line so that they can take your blood and give you the chemo. It goes from your elbow (about) to just above your heart. As we were getting ready to do this, they would say reassuring things like, "If you feel some weird feeling in your heart, we may have gone too far." I was not put out, but was in a room with these 3 nurses, who were lots of fun...and talked about how this was a party, and they were all in their party clothes. They were basically nuts, but I'm glad there are people around willing to add some levity to this whole process. :)
They told me that it would take about 20-25 minutes to put it in--I was in that room for almost an hour. I even got to see my PICC line on a TV, and see where it actually goes in my body. I am looking better and better every day--with lines and tubes coming out of me. Katie and Brian went to buy me a shirt with 3/4 length not everybody has to see all my apparatus. They told me I was a good patient--I think, just because I didn't keep moving, like some of their patients do. It's hard to put a line in your veins, when the person won't hold still. I now get to have my arm mummified in Saran Wrap when I shower so I don't get infection.

At 8:30 yesterday morning we went down to the Piper Cancer Center by Spence's office...and I got a cat scan, so they can map out my radiation. That was very quick--done in about 15 minutes.

This afternoon I have a doctor's appointment with my primary care doctor...and then Spence and I are going to the temple. I am so excited that I can go--I have been longing to go there ever since I got this diagnosis. I need the peace, comfort and strength that I'll find there. Anyway, it's nice to have a morning off from seeing doctors--maybe I could do something so mundane as clean the kitchen--what a thought!

Tuesday, August 17, 2010

Razz Her!

So, I was talking to Louise this morning and she said, "I've already become a saint! Everyone is being so nice to me and comes up to me all long faced and sad. I just want people to RAZZ me like usual." So go ahead. Here's the place to have some fun with good ol' Louise. Share some funny memory or just tell her to stop closing her eyes in all the pictures!!!
She needs it today.

Monday, August 16, 2010

More info--ANOTHER appointment

August 16, 2010
I have been told that people check on here for new entries--sorry I didn't do anymore this weekend. Today I got sympathy/get well cards from several people...and just sat in my living room and cried. I am so thankful for the many wonderful and supportive friends I have. Thank you all SO MUCH!! I think that it is when people express their love and support that I get the most emotional. I feel very undeserving, but oh so thankful!

We are doing all right. I am having a little more pain in my chest and in my back. I think it could all be related to the tumor. Sometimes it's hard to know. After putting my feeding tube in, they told me to practice this weekend. So I did...they want me to drink Carnation Instant Breakfast, but it's a kind you've never seen. It is called VHC, which means very high calories...and they're not kidding. They gave me the vanilla to drink, and I just don't like it. So instead of trying to swallow it, I just put it in my feeding tube and let it drip into me. Even mixed with other things, I don't like it either. We have some of that Odwalla or Naked juice, which is a bunch of fruits and vegetables put together with no sugar. It is supposed to be WAY good for you...and my son, Brady, just loves it. Right now eating and drinking (mostly drinking) don't hold any appeal for me...but they told me today that I better keep swallowing, or all the muscles in my throat area won't work, and I'll need more therapy to teach me to swallow again. Katie, my daughter, tries to add aloe juice to everything. This new diet definitely takes some getting used to!

Today we went to the radiologist oncologist--and we were super impressed with her. Her name is Dr. Racine, and she could answer a lot of questions and tell us a lot of stuff. Brian, my son, went too, and I think it was great for him to see where I will be treated, talk to some of the people there, and hear more about my treatment. I'm sure it made him feel better...and I know that i love having my children around me. The only one not here is Emily, who is up in Utah, and I miss her very much. It just doesn't seem right not to have her here too. She will come in a while, and that will be great.

We found out something interesting from this doctor. Spence asked her how long this cancer could have been growing...and she said, 2 or 3 years. We were blown away by that. She said that until the cancer cells grow into a tumor, you can't detect them (I may have that wrong, so any of you oncologists are welcome to correct me). She also said that 90% of all esophageal tumors she treats are like mine (where lymph nodes are involved and they are in stage 3). She has only had two cases of this cancer in stage one because there are no symptoms early on.

I have a cat scan tomorrow to pinpoint exactly where the radiation is going to be, then I get a pick line put in my arm (Actually just starts above my heart), and in the afternoon we meet with the chemo doctor. They keep you running with all these appointments. I fall into a very deep sleep in between appointments. I have always loved naps, but now I get to take them any time I want, and no one gives me a hard time. :) Again it is physical and emotional exhaustion...and I haven't even started treatments yet!

This doctor explained the procedure for this radiation. They fuse the findings from the pet scan with this new "mapping" cat scan and then let the computer help them in mapping the areas where they will radiate. They will try to avoid the heart and lungs as much as possible. They will not only be aiming at the tumor, but at specified margins around the tumor. They do include the infected lymph nodes in the radiation. They take about 3 days to consult with each other (other radiologists and other doctors) about exactly where they should put this. It is a pretty precise procedure, and they are trying very hard not to radiate any part that doesn't have any signs of cancer. We'll find out more about the chemo tomorrow. This doctor was probably one of the most impressive we have met with yet--thank heavens for good doctors! WE feel like I'm in good hands.

My kids seem to be doing all right. They are all very concerned and very attentive to me, and it is wonderful to feel their love. Brady is the most positive, and is sure we're going to lick this cancer--love that attitude! People in our ward and in our neighborhood have brought over dinners. I just tell them that they owe ME a dinner when I can eat again...because it's hard to see all this yummy stuff served, and not be able to eat any of it. But it's awesome for my kids!!

This is Spence writing now. Yesterday we came together as a family and invited 4 other close friends including our bishop and our former stake president (whom I served with). I spent about 10 minutes talking about how important faith in Jesus Christ was as part of her recovery. I told some stories of Christ who healed those with pure faith in him (the lady who touched his hem and Jairus who knew Christ would raise his daughter from the dead). In both accounts Jesus said it was faith that "made them whole". Then with the help of the other men, I gave her a Priesthood blessing. I fasted and I know others who have fasted in the last week for her. We would ask any of you who would like to fast specifically for her on fast Sunday, September 5th. That would be a great unifying of all of your great faith on that day. Christ said, "...this kind goeth not out but by prayer and fasting." Matt 17:21.

Well, that's about it for today. We actually went to REd Robin for dinner tonight and had a great time. The waiter said he would strain some clam chowder so I could eat it--however, it didn't happen. But never fear, Spence had brought a strainer from home, so I could get two heaping teaspoons of clam chowder minus the clams and potatoes. It was awesome. Have a good day tomorrow--another report tomorrow since we have 3 doctor's appointments then. If you don't have doctor's appointments, how do YOU fill YOUR day? Love to all, Louise and Spence

Friday, August 13, 2010

Friday's Update--August 13, 2010

I am not sure how often I'm supposed to write in here, but you may hear from me more than you want. As many of you have known me, I love smiley faces--however, when I make a smiley face in one of my entries, it just comes out as two horizontal bars! Melanie, if you have any ideas, please let me know. :) (Smiley face)
Spence,Katie and I went to the Piper Cancer Center this morning to meet with a nutrionist. Katie, for those of you who don't know, is my daughter, who came home for a few weeks from Utah where she goes to school. When she heardabout me being sick, she wanted to come so she can help me along...or tell me what she wants me to do. She has never been shy, and so she asks lots of questions, and goes along with us to doctor's appointments. The nutritionist, Terry Taylor, was fabulous. She was very upbeat, and made my menu sound much more varied than the 3 different flavors of Ensure that I've been drinking. She even told me that if I drank Aloe Vera juice, it would help coat my throat, which will get burned by the radiation, thus making swallowing hard. I have never drunk aloe vera juice, but I guess in this new "adventure" I'll be doing many things I"ve never done before. She, the nutritionist, was very positive, and we talked about different things I can eat--avocado smoothies may head the list! After her, we met with Joyce, who helped me learn to use the feeding tube. I want you all to know that I passed the feeding tube test--was able to pour water and calorie packed (and protein packed) Instant Breakfast into this tube without spilling too much.This Instant Breakfast is NOT the stuff you get on your local grocery store shelf. I learned how to clean out the tube. The nurses in radiology made me feel like you could never ever get this opening wet because infection would set in. Joyce was much more realistic, and I felt much less paranoid about the whole thing. Joyce was so much fun--instead of holding this syringe with the liquid in it, and watching it drip, I can even use a bag...and they're going to give me a pole to hold it up (like having your own personal drip system) You can tell I"m getting desperate for something fun, if I think having a pole, holding up my drip bag is FUN.
I really loved this Piper Center--does anyone really love a cancer center? It is a very nice facility, the people are super nice and helpful. They have all kinds of services--even cooking classes where you can learn to make really healthy smoothies and other fun things. They will also get a guy to help you make a personal exercise program--and they have some good equipment. We were very impressed by this older woman who was diagnosed with colon cancer (also going into the liver) in 2007. She was like the exercise queen! She was still having chemo treatments, but was mixing them with nutrition and exercise. I have never belonged to a health club--this is my big chance. :) (another smiley face, in case you are seeing horizontal lines)

Well, that's about it for today, except that Katie and I went to Sprout's grocery store, and bought all kinds of healthy things. (Can't wait till I can eat cookie dough again!)

I love you all--sorry this is such a long post, but I've always liked to talk. Next week we still have more things to do so it doesn't look like I'll start chemo for another week. Have a good weekend--and thanks for all your positive thoughts and encouraging words and inspiring prayers! Like EMily said in her first post, Spence is right by my side for everything, and is my Number 1 caregiver.

Thursday, August 12, 2010

Getting a Feeding Tube...and other fun Adventures!

August 11, 2010
Since I have never written on a blog before, I’m going to have to ask my niece, Melanie, exactly how to enter this in. I am not quite as technologically inept as I appear.  I am thankful to Melanie and my daughter, Emily, for starting this off. I am a journal writer/not a blog writer. I like to use my journal to vent feelings that I’m not sure I would always like to share. I have many journals, and they aren’t very exciting. However, I have always enjoyed writing about my life. This is not a part of life that I’m really excited to write about. However, I have been overwhelmed by the amount of love and concern that has been shown to me—and wanted to keep all of you updated on what is going on. If we don’t answer your phone calls, don’t take it personally—right now we are seeing doctors and making arrangements for upcoming treatments. Last night I spent the night in the hospital, Scottsdale Shea, because they were putting a feeding tube in me…and then wanted to watch me to make sure that it was working all right. As you know, sleeping at a hospital is hardly restful—but I am so good at sleeping almost anywhere that I still could sleep through the pokes and prods that they do at all hours of the night. We waited all morning to be discharged, but it seemed to take the doctor forever to finally come to our room. We went home, but came back very shortly to meet with the oncologist. We were impressed with the oncologist and his physician’s assistant. There still is much coordinating to do, so that we can meet with the nutritionalist, the chemo lady, another radiologist, and whoever else is on the list. As they talked about doing radiation and chemo, it pretty much overwhelmed me. I know it is not going to be easy, and I am scared. But I have the most tremendous support system, led by Spence and my kids…and I know their faith, prayers and help will help me a lot. I love them so much—my family has never seemed more precious to me. It’s kind of dumb that it takes real emergencies for us to appreciate all the blessings we really do have. I am also so grateful for prayer and for the comfort and strength that it brings. I am thankful for so many amazing people that are just waiting to help in whatever way possible. Basically, I just love you all, and hope you feel that.  Much love always, Louise

Wednesday, August 11, 2010

Spence's email

Here are the details from a recent email from Spence:

Dear Family and Friends,

By now I am sure that most of you have heard the shocking news of Louise’s esophageal cancer tumor. We are trying to cope with this challenge in our lives. Its hard to even believe that it is real. But, we are determined to do everything we can do to fight it. We will do all we can do medically from chemo, radiation, surgery and possibly participating in the latest cancer research studies which are being done a mile from our home. We will fast and pray and give Priesthood blessings and use as much faith in Christ that we can. We will prove our faith with righteous obedience in all things. We then will know that the blessing and miracle of complete recovery will be the will of the Lord and we will trust in his wil

Yesterday and today she is in the hospital (will be released in a few hours) where she had a feeding tube inserted into her stomach. If the chemo and radiation cause the tumor to close off her esophagus, she will have a source of food and water. This afternoon we meet with the oncologist for the first time.

Thanks for all your heartfelt love you have sent our way. I know the feeling of wanting to do anything to help. Right now your faith, prayers and encouragement would be the very best that you could do for us.



Tuesday, August 10, 2010

Ok, so cell phone cameras aren't great. But I just had to add this picture of Louise at the hospital today waiting to get her feeding tube put in. She looked so great. She seemed so brave. We love you Louise!

"Cancer is a word, not a sentence." John Diamond

Melanie - you're a gem. Thank you so, so much for setting this up so that we can keep people updated. It means so much to me that you would take the time to do this. The blog is beautiful, and I know my mom will love it. More than anything right now I want to thank everyone for the kind words, love, support, prayers, flowers, meals, etc. that have been sent our way. The Lord really does His work through individuals and we are benefiting enormously from that right now. Our family and friends have really come together to show us that we are not alone AT ALL in this endeavor, and it is so very comforting. I don't think cancer is a stranger to any of us. Unfortunately, it is so rampant I am absolutely positive it has affected each of us in some way.

This first post is going to be a little long in order to get everyone caught up. My mom has been having chest pains and trouble swallowing for quite a while now. As I recall, Mothers Day of this year is when she really started to have problems, although it had been going on before Mothers Day. The doctors she went to at the time couldn't figure out what was causing the pain. She got some medication that did nothing, and she also got some advice from a doctor to see a psychiatrist for anxiety. From then on, our family was convinced that this was a form of anxiety, and with the proper help, my mom would be able to overcome her problem with eating/swallowing. In my mind it was almost as if she was embarrassed or felt awkward eating in front of others and as a result would panic, choke, and throw up. That gives you at least a little bit of background. Unfortunately, I don't live at or even close to home right now, so I don't have every detail, but I'll do my very best to give you the details to the best of my knowledge.

The very end of July my whole family went to the beach and the amount of weight my mom had lost was shocking. She was not able to get much solid food down at all, and whatever she was able to swallow ended up coming right back up. She was able to drink liquids and smoothies, but as you can imagine, that gets awfully boring after a while. My Dad gave her a beautiful blessing with the help of my Grandad, Michael, and Brian. My mom was scheduled to have tests done after our vacation which included an endoscopy. This test showed the damn tumor (sorry if that offended anyone, but there's really no other way to describe it. I know my sister, Kelsey, won't be offended as that is her swear word of choice. Just ask my dad and the Hoover Dam) in all it's glory blocking the esophagus. The doctor was a little surprised my mom was able to swallow any food at all other than straight liquids. She was put on a liquids only diet, had blood taken, had a pet scan and cat scan done and was sent home. Waiting is the worst. I hate not knowing. Don't ever look up any kind of cancer or tumor on the internet - it's scary. For those of you that did look it up, I'm sure you read that the chances of having a benign tumor in your throat are very, very slim. It is almost always cancer, especially if you're a white male, smoker, tobacco chewer, or alcoholic - all of which my mom is not. Weird.

Yesterday we got the news that my mom does, indeed, have cancer. It has spread into her lymph nodes. She will have to go through chemotherapy, radiation and surgery. I believe that the cancer that has spread into the lymph nodes will need to be gone before they can do surgery. I didn't get any specific details about when all of that will take place, but I do know that she is meeting with the oncologist tomorrow, so we will have an update for you then. She went in today for a feeding tube so that she has the strength she needs for chemo. Chemo is brutal. We're not looking forward to it at all, but we're focusing on finding the best ways to keep my mom strong so that her body can support her through all the chemo. Obviously getting the right nutrients will be the best thing for her body, but I think a good dose of humor now and then as well as the support of family and friends will help to keep her strong as well.

Michael and I went to the temple the night we found out about the tumor and the word "prepare" kept going through my mind over, and over, and over again. I am grateful for that. I'm grateful because I think it did help prepare me (not that anyone is ever fully prepared for news like this). For some reason, I have always been fairly level-headed when it comes to tragedies and/or emergencies. I get it from my dad. Which reminds me, my dad had blood work done as well in order to monitor what is going on with his liver and everything came out just fine. Phew. My dad is the absolute best person for my mom to have around. He doesn't ever panic, and faces things head-on rather than shying away from the sometimes harshness of reality. He will definitely be a calm amongst the storm that is her life right now and I am so incredibly grateful for him. My siblings have really come together in a way like never before to comfort each other and support my mom. I think I speak for my whole family when I say that we can do hard things. We have been called upon to do our very best with this trial and that is exactly what we will do. I think everyone in my family has felt a little bit of guilt over constantly telling my mom that she was dealing with anxiety and that it is all in her head, however none of us could have known what was really going on without the proper tests being done. How grateful I am for doctors and technology.

Thank you all again for all of your support. My family won't get through this without our family and friends. We love you!