It is very cold for Arizona right now--you who live anywhere but here would probably laugh at how cold we've been...but it's all relative, right?! Remember we have summers where it reaches 115--so 40 is cold to us! (Tonight we are supposed to go below freezing).
Today I went to the cancer center, and I just want to say again how much I respect and love the people who work there. They are just the best--so encouraging, so positive, so supportive. You couldn't ask for anything better. I have tried to work out this week, so I can be physically strong for next week. The work out center is not a very big room--has some different equipment, but what makes it special are the two fabulous people who work with all us patients. And what is even more amazing are the people who come in there to work out. They are in various stages--some still with cancer, some long-time survivors of cancer, but all who want to improve their lives...and do as much as they can to conquer the big C. (that ugly word that we all hate--cancer). There was a lady in there today, who had her last chemo in January. She was a larger woman, but had determined that she would really get into an exercise routine. She exercises 3-4 times a week for 1 1/2- 2 hours a time. It is so inspiring to be in that place, because these people are fighters, and are determined to fight this nasty disease. I love being in there and watching them. There was a much older man, who had tubes connected to him--he was just working on standing up and sitting down--to watch his determination at a task that would be so easy for most of us, was also inspiring. I was just sad that I hadn't brought my daughter, Emily, who is visiting, to see what goes on there.
Then I went to get my PICC line changed (I do that every week), and the lady in there was great also. She was very concerned about my surgery, but wanted to encourage me to get moving as fast as possible...even if it caused me great pain. She told me that I should drink champagne before I went in to the hospital. When I told her I didn't drink, she told me she would drink champagne FOR me!! I love the way all these different people show love and support--with so many people cheering me on, I will make it through this next challenge!
Thursday, December 30, 2010
Tuesday, December 28, 2010
Getting ready for the big day...
I haven't written for a few days. That's because there is not much to report. :) I am enjoying the distractions of having my family here. Sometimes in my quieter moments, I start thinking about my upcoming surgery, and get nervous. But most of the time I can put those thoughts away. I have had some preliminary tests--some blood work and an EKG, and been checked out by my primary care doctor. I have been okayed to do the surgery...now I just have to keep myself well. I can't have any infection or cold, and so I have babied myself this week. I am trying to work out every day, so that I can be in as good of shape as possible. I go to the hospital on Friday to do some lab work. I'll tell you--you sure see a lot of doctors when you're going through something like this. It makes you appreciate what people go through who are doing this all the time--we just take our good health for granted, that's for sure. I feel like Spence could use your good thoughts and prayers. Of course, he's the most nervous about this, and worries about all the possible things that could happen. I really feel like situations like this are hardest for the main caregiver...so keep him in your thoughts. I love you--I just want to be sure that you all know that. Feelings are pretty tender at times like this, and I want you to know that I couldn't do what I'm doing without your love and support. May God bless you in all that you're doing and feeling for me. Have a good day, Louise
Sunday, December 26, 2010
We survived...and enjoyed Christmas!!
Hello everyone. How was your Christmas? Ours was terrific, but exhausting. Spence and I spent a good part of Christmas Eve wrapping--we are always behind schedule. About midnight on Christmas Eve, my girls, Emily and Kelsey, finally convinced me that I shouldn't stay up any longer (I was really dragging), and they finished up my wrapping (I still had a couple of things to wrap), and then put my presents under the tree. They were both great helps to Spence as well, because they helped him put bows on presents, and put more things under the tree. It was a crazy, fun Christmas morning, with many gifts for everyone. We had a great time, and then a very fun, but also spiritual time at Spence's dad's house--he is a wonderful, caring grandfather, and we love him. He spent time (a couple of minutes) with each of his children and grandchildren who were there, giving us advice for the coming year. It was a very sweet experience. He is a great leader for our family.
It has been good to be with family. Needless to say, not every minute has been perfect, but we've had a lot of fun laughing and being together. The kids have been great helps around the house--picking up, doing dishes, etc. They have been good to us.
I am feeling pretty well--I do appreciate naps and breaks, but it has been good to be with everyone, and to especially enjoy our grandson. The only problem is that I wish I could eat with everyone. I still sneak things, much to Spence's despair, and usually I'm able to keep them down--at least that's the goal! :)
In a week, I'll be heading into surgery. People ask me if I'm worried, but I am trying to put those thoughts aside, and just enjoy this time right now. I'm grateful to have my family here. As I've said before, good things come out of challenging times. One of my "good" things is to be surrounded by my family. Love to all, Louise
It has been good to be with family. Needless to say, not every minute has been perfect, but we've had a lot of fun laughing and being together. The kids have been great helps around the house--picking up, doing dishes, etc. They have been good to us.
I am feeling pretty well--I do appreciate naps and breaks, but it has been good to be with everyone, and to especially enjoy our grandson. The only problem is that I wish I could eat with everyone. I still sneak things, much to Spence's despair, and usually I'm able to keep them down--at least that's the goal! :)
In a week, I'll be heading into surgery. People ask me if I'm worried, but I am trying to put those thoughts aside, and just enjoy this time right now. I'm grateful to have my family here. As I've said before, good things come out of challenging times. One of my "good" things is to be surrounded by my family. Love to all, Louise
Thursday, December 23, 2010
Merry Christmas to All!!
Well, you now have all the medical news from Dr. Spence--he's getting quite good at explaining all these different procedures--at least he sounds like he knows what he's talking about.
We were surprised at how soon the surgery is going to be. However, we had just heard the day before that there was a "window" of time that we needed to do the surgery in. I think that Spence explained this, but I will repeat it just in case. The scarring from the radiation can get so bad that it would make it a very difficult surgery...so we needed to get in sooner rather than later. We both felt calm and good about the surgeon. He took quite a bit of time with us and explained things very well, and was willing to answer all of our questions. We will be at Good Samaritan Hospital, which is a very good hospital. Of course, we realize what a big surgery this is...and that is scary...but we feel like we are in good hands...and know that Heavenly Father is very aware of what we will be doing, and He will be there to comfort us and inspire the doctors.
Just a word about Christmas, since I probably won't write again until after the big day. In spite of all the craziness associated with the season, I truly do love Christmas. As I told you a few posts ago, one of my favorite things is Christmas music...but I realized something also this Christmas. One of the reasons I love the Christmas carols so much is because of my mother. She loved music, and shared that love with her children. I love the words of the carols, and know many of them, and I attribute a lot of that to her. So, as we give gifts this year and in Christmases to come, let us share the beautiful carols of Christmas with our families--they truly sing praises to the birth of our Savior and can bring "joy to the world." May the Lord bless you in the coming days--thank you for all the "gifts" of love, comfort, inspiration and hope you have given me this year. I love you all very much, Louise
We were surprised at how soon the surgery is going to be. However, we had just heard the day before that there was a "window" of time that we needed to do the surgery in. I think that Spence explained this, but I will repeat it just in case. The scarring from the radiation can get so bad that it would make it a very difficult surgery...so we needed to get in sooner rather than later. We both felt calm and good about the surgeon. He took quite a bit of time with us and explained things very well, and was willing to answer all of our questions. We will be at Good Samaritan Hospital, which is a very good hospital. Of course, we realize what a big surgery this is...and that is scary...but we feel like we are in good hands...and know that Heavenly Father is very aware of what we will be doing, and He will be there to comfort us and inspire the doctors.
Just a word about Christmas, since I probably won't write again until after the big day. In spite of all the craziness associated with the season, I truly do love Christmas. As I told you a few posts ago, one of my favorite things is Christmas music...but I realized something also this Christmas. One of the reasons I love the Christmas carols so much is because of my mother. She loved music, and shared that love with her children. I love the words of the carols, and know many of them, and I attribute a lot of that to her. So, as we give gifts this year and in Christmases to come, let us share the beautiful carols of Christmas with our families--they truly sing praises to the birth of our Savior and can bring "joy to the world." May the Lord bless you in the coming days--thank you for all the "gifts" of love, comfort, inspiration and hope you have given me this year. I love you all very much, Louise
Tuesday, December 21, 2010
After all the previous torture they will now slit her throat??
Just call me Dr. Price. I get to post all of the technical stuff, not because I know anything about it, I just try to remember what they say.
Anyway, Louise and I have been talking to every doctor in town trying to find the right surgeon referral for her esophagectomy surgery. We appreciate all of the referrals that we have received and I think we know the top 5 in town who could perform this detailed surgery. We have ended up selecting Dr. Richard Perry who was referred by our GI doctor. We met with him yesterday and were real impressed. We were frank in the interview process that we were looking for the very best surgeon who had done many of these specific surgeries and had a very high success rate. He was honest back to us and told us the names of the very few who had his type of experience. One was a doctor we had received 2 other referrals for. But this doctor, Dr. Perry, spent a lot of time with us and showed us with pictures and props the alternatives to this type of surgery and what the advantages are for what he is going to do. We have prayed for divine inspiration to know the right doctor and both Louise and I felt the Spirit telling us that he was the one.
One thing we did not know was there was only a relatively short window of time after radiation therapy in which this surgery could be the most effective. I guess that after radiation there is maybe a 3 month window before the scarring really starts increasing. This window of time was closing right now and he encouraged us to get this done as soon as possible. His calendar and his 4 or 5 man team of doctors performing the surgery, put us at Monday, January 3rd at 8 am. He anticipates it to be about a 4 or 5 hour operation. It will be done at Banner Good Samaritan in Phoenix. Its one of my favorite hospitals because that is where I entered this world in 1950.
So here is the scoop on the surgery: It is called a transhiatal Esophagectomy (THE). Only about 1/3 of the upper esophagus will remain and only a part of the stomach will remain. Part of the reason for that is because the surgeon wants the margins from the cancer to be big to insure that all the tissue that might have cancer is eliminated. In layman's terms, they will make a vertical opening to the abdomen from the breastbone down to the belly button. They will also make a 2 inch incision in her lower neck (slit her throat). They will then free up her stomach from all attachments, cut the upper half off and slide it up the track where the esophagus once was. They will pull the lower 2/3 of the esophagus out of the neck and cut it off at that point. Then they will attach the stomach to what is left of the esophagus with staples (which are supposed to be much better than suchers). I hope their staple gun works better than mine. The stomach will then kind of serve as the lower esophagus from that point. I forgot to ask what will serve as the stomach from that point. They will then try to put all the plumbing back together. Yikes!
If you are like Louise and me, we were a little overwhelmed by the description of that operation. Double yikes!! They say though that it has been effective for removing cancerous tumors and surrounding lymph nodes. By the way he will be removing all lymph nodes in that particular area. They are certainly trying to eliminate all cancer in the body. This doctor was very encouraging that Louise had already responded so well to the chemo and radiation. He was also encouraged that the one lymph node that was cancerous initially was so close to the tumor and had not spread to other lymph nodes even inches away. He felt like this operation was a very necessary step to her total cure.
This posting is way to long and I have probably lost most of you by now so I won't go into other details about recovery and quality of life. She will probably be in the hospital for 10 days. They need to make sure the new connection heals properly--no leaks and no infections. She will be forced to do a lot of walking in the hospital and once she is released. That will aid in the recovery.
For more details of the surgery and even a doctor explaining everything in more detail, I refer you to a link at: http://surgery.med.umich.edu/thoracic/clinical/what_we_do/esophagectomy_faq.shtml. I see this doesn't link by clicking. Highlight this link, click the arrow that appears and go to "search by google" and it will be the first entry. Or highlight, copy and paste to your browser.
Thank you for your interest and keep those prayers coming. Those of you who would like to shed some of those Christmas pounds, can join with many of us who will be fasting for Louise again on Sunday, January 2ND. All are welcome to join in. The September joint fast by so many of you was a huge success in behalf of Louise.
Thanks for enduring this,
Spence
Anyway, Louise and I have been talking to every doctor in town trying to find the right surgeon referral for her esophagectomy surgery. We appreciate all of the referrals that we have received and I think we know the top 5 in town who could perform this detailed surgery. We have ended up selecting Dr. Richard Perry who was referred by our GI doctor. We met with him yesterday and were real impressed. We were frank in the interview process that we were looking for the very best surgeon who had done many of these specific surgeries and had a very high success rate. He was honest back to us and told us the names of the very few who had his type of experience. One was a doctor we had received 2 other referrals for. But this doctor, Dr. Perry, spent a lot of time with us and showed us with pictures and props the alternatives to this type of surgery and what the advantages are for what he is going to do. We have prayed for divine inspiration to know the right doctor and both Louise and I felt the Spirit telling us that he was the one.
One thing we did not know was there was only a relatively short window of time after radiation therapy in which this surgery could be the most effective. I guess that after radiation there is maybe a 3 month window before the scarring really starts increasing. This window of time was closing right now and he encouraged us to get this done as soon as possible. His calendar and his 4 or 5 man team of doctors performing the surgery, put us at Monday, January 3rd at 8 am. He anticipates it to be about a 4 or 5 hour operation. It will be done at Banner Good Samaritan in Phoenix. Its one of my favorite hospitals because that is where I entered this world in 1950.
So here is the scoop on the surgery: It is called a transhiatal Esophagectomy (THE). Only about 1/3 of the upper esophagus will remain and only a part of the stomach will remain. Part of the reason for that is because the surgeon wants the margins from the cancer to be big to insure that all the tissue that might have cancer is eliminated. In layman's terms, they will make a vertical opening to the abdomen from the breastbone down to the belly button. They will also make a 2 inch incision in her lower neck (slit her throat). They will then free up her stomach from all attachments, cut the upper half off and slide it up the track where the esophagus once was. They will pull the lower 2/3 of the esophagus out of the neck and cut it off at that point. Then they will attach the stomach to what is left of the esophagus with staples (which are supposed to be much better than suchers). I hope their staple gun works better than mine. The stomach will then kind of serve as the lower esophagus from that point. I forgot to ask what will serve as the stomach from that point. They will then try to put all the plumbing back together. Yikes!
If you are like Louise and me, we were a little overwhelmed by the description of that operation. Double yikes!! They say though that it has been effective for removing cancerous tumors and surrounding lymph nodes. By the way he will be removing all lymph nodes in that particular area. They are certainly trying to eliminate all cancer in the body. This doctor was very encouraging that Louise had already responded so well to the chemo and radiation. He was also encouraged that the one lymph node that was cancerous initially was so close to the tumor and had not spread to other lymph nodes even inches away. He felt like this operation was a very necessary step to her total cure.
This posting is way to long and I have probably lost most of you by now so I won't go into other details about recovery and quality of life. She will probably be in the hospital for 10 days. They need to make sure the new connection heals properly--no leaks and no infections. She will be forced to do a lot of walking in the hospital and once she is released. That will aid in the recovery.
For more details of the surgery and even a doctor explaining everything in more detail, I refer you to a link at: http://surgery.med.umich.edu/thoracic/clinical/what_we_do/esophagectomy_faq.shtml. I see this doesn't link by clicking. Highlight this link, click the arrow that appears and go to "search by google" and it will be the first entry. Or highlight, copy and paste to your browser.
Thank you for your interest and keep those prayers coming. Those of you who would like to shed some of those Christmas pounds, can join with many of us who will be fasting for Louise again on Sunday, January 2ND. All are welcome to join in. The September joint fast by so many of you was a huge success in behalf of Louise.
Thanks for enduring this,
Spence
Monday, December 20, 2010
some words about wigs...
This is not going to be an earth-shattering entry. In just a few minutes, Spence and I go to meet with the surgeon. Knowing Spence's abilities to communicate so well, I will probably let him tell about that visit...and our feelings. So I just thought I would say hello and tell you about my experiences with my wig at church yesterday. People were very complimentary about it, and the ones who didn't like it were kind enough not to say anything. So it wasn't an emotional, traumatic thing for me.
However there are some things you need to know about wigs. They are itchy, and sometimes you feel like they are puffing up and are going to just fall off. I had my girls constantly checking for me to see if it was too far off my forehead or puffing up, where it looked like I had some bouffant style. It wasn't the easiest thing, but again, it felt good to have something on top of my head! Plus when I was shopping with Katie on Saturday, all of a sudden I had a headache, and it was because my wig was too tight. She loosened it as much as she could, and it is working much better now. When I am home, I take it off, and try not to scare my grandson with my weird "real" hairdo--black sprouts all over my head, with a few wispy hairs coming out from the side. I am truly a vision of loveliness! NOT... Until our report from the surgeon...
However there are some things you need to know about wigs. They are itchy, and sometimes you feel like they are puffing up and are going to just fall off. I had my girls constantly checking for me to see if it was too far off my forehead or puffing up, where it looked like I had some bouffant style. It wasn't the easiest thing, but again, it felt good to have something on top of my head! Plus when I was shopping with Katie on Saturday, all of a sudden I had a headache, and it was because my wig was too tight. She loosened it as much as she could, and it is working much better now. When I am home, I take it off, and try not to scare my grandson with my weird "real" hairdo--black sprouts all over my head, with a few wispy hairs coming out from the side. I am truly a vision of loveliness! NOT... Until our report from the surgeon...
Saturday, December 18, 2010
Shop until you drop...
That totally describes our day around here. It has been crazy. I went out about noon, thinking I could get all kinds of things done (this is when we are sure the tumor has left my esophagus, and entered my brain). In the first store, I was so tired that I barely made it to the second store--it was crazy. Then it was home to help Spence put up the last of the decorations that we decided to use (for once we decided not to put everything up that we have...which is just fine, and our house still looks Christmasy). Of course, I fit a nap in between all that, and felt much refreshed. Then Katie and I went on a speed shopping trip. Katie is fast, and makes quick decisions, and we got a lot done. Again, there was some resting time...and then Spence and I went out after dinner. See, I told you, I really am brain dead! I can't wait to get into my pjs, and just relax for the rest of the night. I probably couldn't have done all that if I was feeling 100%...needless to say, it wasn't the smartest of decisions to do that when I am still not up to full strength. Oh well--we made it, and have lived to tell the tale.
Brian, my son, and his wife, Keri and son, Logan, arrived yesterday. So did Katie, our daughter in college. It has been fun to have them here. I keep telling them I'm playing the "cancer card," so they have to feel sorry for me, and help me in any way I need them to. So far, they're going along with it--we'll see if it continues. No, truly, it is wonderful to have them here--we laugh a lot, and it is just so nice to spend time together. Have a good Sunday tomorrow. Love you lots, Louise
Brian, my son, and his wife, Keri and son, Logan, arrived yesterday. So did Katie, our daughter in college. It has been fun to have them here. I keep telling them I'm playing the "cancer card," so they have to feel sorry for me, and help me in any way I need them to. So far, they're going along with it--we'll see if it continues. No, truly, it is wonderful to have them here--we laugh a lot, and it is just so nice to spend time together. Have a good Sunday tomorrow. Love you lots, Louise
Thursday, December 16, 2010
New Hair--New Me!
Well, I finally broke down and bought this wig--they have had it on hold for me ever since August. My hair has gotten so wispy (practically non-existent on the sides), and lots of bald spots. Kelsey and I do a hair dance when we discover little black sprouts on my head...but we thought it was finally time to try something other than hats to cover my head. I like the feeling that I have something on my head again...even if it isn't truly mine. :) So here is a picture. Spence and I are pleased with it, and I feel like a person again. I always put something on my head when someone came to the door--I didn't want my looks to scare them. Yes, I know it is vanity...but it is a hard thing for a woman to lose her hair.
I had another doctor's appointment today, but that was pretty routine, and I am doing fine. Last night we went to see "A Christmas Carol" with our friends, Jim and Candace Hazar. It was so much fun.
Well, I finished my Christmas cards, and that is something to cheer about. I also have my gifts ready that need to be sent...so hopefully that happens tomorrow. Our house still has about 1/2 of the stuff that we have...but you know, we are surviving, and Christmas will go on...even without all the extra decorations! I hope your Christmas celebrations and preparations are going well. Listen to lots of Christmas music--there is nothing that puts you more in the mood for Christmas than the music. :)
Tuesday, December 14, 2010
Carolers make my day!
Today was another pretty busy day...however, it did include a long nap...so I'm hanging in there. I told my son tonight that I just wish I could keep going, but I'm still in the "pacing myself" mode.
I went Christmas shopping with my friend, Candace Hazar, and we had such a good time. We were gone the whole morning...that's why I was ready for a "long winter's nap!" I appreciate people being willing to take me places and help me get errands done.
This afternoon came the highlight of my day. Our Primary children (children in the ward ages 3-11) came in a TROLLEY and caroled to us. It was the BEST!! Those children have meant so much to me during this whole cancer battle--they give me hugs, and do thoughtful, wonderful things like caroling today. That was truly a highlight of the season. Bless them and their wonderful leaders for doing such a nice thing. I was truly touched. Again--the little things are the BIG things!
I went Christmas shopping with my friend, Candace Hazar, and we had such a good time. We were gone the whole morning...that's why I was ready for a "long winter's nap!" I appreciate people being willing to take me places and help me get errands done.
This afternoon came the highlight of my day. Our Primary children (children in the ward ages 3-11) came in a TROLLEY and caroled to us. It was the BEST!! Those children have meant so much to me during this whole cancer battle--they give me hugs, and do thoughtful, wonderful things like caroling today. That was truly a highlight of the season. Bless them and their wonderful leaders for doing such a nice thing. I was truly touched. Again--the little things are the BIG things!
Monday, December 13, 2010
Monday's "Musings"
Hello. It is Monday, and I am determined to write a little more this week. Our appointment with the surgeon has been changed to Monday, the 20th. He is sick this week (imagine that--I thought that doctors and mothers weren't ALLOWED to get sick!). We have still been talking to friends, and trying to get some insights about possible surgeons.
I have eaten a couple of things--a peanut butter cookie yesterday and another cookie last night. I complained to my niece, Melanie Wellman, that I was eating junk food and not good stuff--and she asked me how smoothly I thought a piece of celery would go down. She does have a point there! I am funny--I was also able to snack on some Fritos with Spence yesterday--it's funny how chips and crackers go down, but there again I am missing out on the nutrition.
I had another busy Sunday yesterday--the whole block, and then back for a fireside--getting there early to try to get a good seat, and then there for about 2 1/2 hours. I just crashed when I got home! I have done a little Christmas wrapping and some more cards (the never-ending Christmas task).
When people ask me how I am, I actually feel pretty good. I just still am working on building up my energy, and that is a day-to day thing. I am thankful for breaks that I take...and for music and for my family that can often make me laugh. Laughter is one of the best ways to make you feel better. May you have much to laugh about today, and may you remember like my sister says, every day is a gift. Love to all, Louise
I have eaten a couple of things--a peanut butter cookie yesterday and another cookie last night. I complained to my niece, Melanie Wellman, that I was eating junk food and not good stuff--and she asked me how smoothly I thought a piece of celery would go down. She does have a point there! I am funny--I was also able to snack on some Fritos with Spence yesterday--it's funny how chips and crackers go down, but there again I am missing out on the nutrition.
I had another busy Sunday yesterday--the whole block, and then back for a fireside--getting there early to try to get a good seat, and then there for about 2 1/2 hours. I just crashed when I got home! I have done a little Christmas wrapping and some more cards (the never-ending Christmas task).
When people ask me how I am, I actually feel pretty good. I just still am working on building up my energy, and that is a day-to day thing. I am thankful for breaks that I take...and for music and for my family that can often make me laugh. Laughter is one of the best ways to make you feel better. May you have much to laugh about today, and may you remember like my sister says, every day is a gift. Love to all, Louise
Saturday, December 11, 2010
Back in the saddle again...
Wow--I have gone a whole week without writing anything. Spence comes through again for me. I didn't have a whole lot of things to write earlier in the week, although I WILL share a picture of me Christmas shopping--actually WHEEL CHAIR shopping! My friend, Eileen Allred, rented me a wheelchair, so I could actually last TWO hours rather than one. :) We had a great time, and I was exhausted when I got home! (typical me!)
On Wednesday when we met with Diane, the nurse practitioner, I was crushed when she said there were more malignant cells. I kind of hibernated for the rest of the day, and tried to process news that I guess I was hoping that I wouldn't hear again that there were still cancer cells. I KNEW that I wasn't cured, just because the tumor was gone, but I just didn't want to hear that ugly word, malignant, again. By Thursday morning, I was in better spirits, and could see the more positive side of everything. We really have planned on having surgery all along, and hopefully, this surgery will not only enlarge the opening in my esophagus, but it will also take care of any other malignant cells. Spence has been good about emphasizing the positive in this news...and I appreciate that.
We are now scheduled to meet with a surgeon on Thursday morning. I think one of Spence's biggest concerns from the beginning was to get the very best surgeon we can to do this surgery. The one that has been recommended by our GI doctor is a general surgeon...and so we are talking to some of our doctor friends and see what their thoughts are. We are kind of tending to want a doctor who pretty much specializes in thoracic surgery (don't know if I spelled that right) and has done more work in that area. It is hard to know, but we are praying for inspiration. I feel like Spence has been inspired to be so concerned about this surgeon, and so hopefully we will be led to the right person.
I have actually had some pretty busy days this week...and have survived. I've done Christmas shopping, Christmas cards, some crocheting (my favorite diversion!), and even been to Brady's band concert and our ward Christmas party. Thanks for all your thoughts and comments on my blog--I will be writing again more regularly. How thankful I am for all of you who read and follow the blog...and who just are my friends.
Thursday, December 9, 2010
Meeting with Oncologist
Yesterday Louise and I met with the oncologist for a follow-up appointment to discuss the results of the recent CT scan and the endoscopy and to firm up the direction we will go from this point in time. We met with Diane who is the physician's assistant and who had discussed everything with Dr. Donovan who is the actual oncologist. Dr. Lewkowitz, our GI doctor who performed the endoscopy had called Dr. Donovan the day before and had discussed everything with him in detail.
The first news that Diane gave us was that the cytology report from the endoscopy showed that there were malignant cells remaining in the tissue of the esophagus where the tumor once had been. That test result had surprised Dr. Lewkowitz because the tumor was gone and this area at the base of the esophagus had appeared so clear of any remnant of the cancer. Diane emphasized that the upper 2/3 of the esophagus was unaffected.
Diane also went into further detail with us about how "normal" the rest of her body appeared from the CT scan. She said there was no enlarged lymph nodes and no other evidence of any other even small tumors in her body. She said there was also no need for a pet scan at this time because there is no evidence of cancer anywhere other than the cancer cells found in her lower esophagus.
Both doctors agreed that surgery was necessary at this time to remove the lower third of her esophagus to eliminate the current cancer and to remove the tissue that could lead to more cancer later. Surgery would also connect the good 2/3 of her esophagus with her stomach, allowing her to eat normally again.
When we first met with Dr. Donovan before the chemo and radiation began, he told us that there would be three possible scenarios that might happen. This was the second scenario where all evidence showed that the cancer had not spread anywhere in her body and that the tumor would be essentially gone but that remnant cancer cells might still be found in the esophagus and surgery would be required. For some reason, Louise and I have always felt that surgery would be necessary. I am pretty sure we would have opted for surgery even if no other cancer had been found. It made a lot of sense to repair the esophagus permanently so she could eat solids again and removing the once-infected portion of the esophagus could prevent that cancer from ever coming back. Though the results of the cytology test were discouraging to us, we know that there is a solution. That solution is the direction we were headed for anyway--surgery.
A surgeon has been recommended by our GI doctor and we probably will meet with him in the next week or so. We are exploring other possible surgeons also. We anticipate the surgery will take place in early January. It is major surgery and will require a fairly long hospital recovery time as well as a long home recovery period. But Louise is very hopeful that she can heal quickly. She seems to be getting stronger every day. She is going in for an ultra sound for an unrelated matter today, but otherwise she is doing well. Many of you were inspired by her like me, when she bore such a strong testimony in Testimony Meeting on Sunday. She gave such a strong witness of how merciful Heavenly Father is and how He was the reason for this miracle to take place for the ongoing cure to her cancer. May we all draw from her great hope and faith and testimony of a great and merciful Father in Heaven.
Love, Spence
The first news that Diane gave us was that the cytology report from the endoscopy showed that there were malignant cells remaining in the tissue of the esophagus where the tumor once had been. That test result had surprised Dr. Lewkowitz because the tumor was gone and this area at the base of the esophagus had appeared so clear of any remnant of the cancer. Diane emphasized that the upper 2/3 of the esophagus was unaffected.
Diane also went into further detail with us about how "normal" the rest of her body appeared from the CT scan. She said there was no enlarged lymph nodes and no other evidence of any other even small tumors in her body. She said there was also no need for a pet scan at this time because there is no evidence of cancer anywhere other than the cancer cells found in her lower esophagus.
Both doctors agreed that surgery was necessary at this time to remove the lower third of her esophagus to eliminate the current cancer and to remove the tissue that could lead to more cancer later. Surgery would also connect the good 2/3 of her esophagus with her stomach, allowing her to eat normally again.
When we first met with Dr. Donovan before the chemo and radiation began, he told us that there would be three possible scenarios that might happen. This was the second scenario where all evidence showed that the cancer had not spread anywhere in her body and that the tumor would be essentially gone but that remnant cancer cells might still be found in the esophagus and surgery would be required. For some reason, Louise and I have always felt that surgery would be necessary. I am pretty sure we would have opted for surgery even if no other cancer had been found. It made a lot of sense to repair the esophagus permanently so she could eat solids again and removing the once-infected portion of the esophagus could prevent that cancer from ever coming back. Though the results of the cytology test were discouraging to us, we know that there is a solution. That solution is the direction we were headed for anyway--surgery.
A surgeon has been recommended by our GI doctor and we probably will meet with him in the next week or so. We are exploring other possible surgeons also. We anticipate the surgery will take place in early January. It is major surgery and will require a fairly long hospital recovery time as well as a long home recovery period. But Louise is very hopeful that she can heal quickly. She seems to be getting stronger every day. She is going in for an ultra sound for an unrelated matter today, but otherwise she is doing well. Many of you were inspired by her like me, when she bore such a strong testimony in Testimony Meeting on Sunday. She gave such a strong witness of how merciful Heavenly Father is and how He was the reason for this miracle to take place for the ongoing cure to her cancer. May we all draw from her great hope and faith and testimony of a great and merciful Father in Heaven.
Love, Spence
Sunday, December 5, 2010
Sunday Night
It is Sunday night, and I've been able to go to Church for our full 3-hour block, and also go back this evening for a Christmas broadcast from Salt Lake City, and our leaders there. It is my favorite way to start the Christmas season--I love the music and the talks. At least it gets us off to a good start...and hopefully we can keep that spirit with us, at least for some of the Christmas season.
I am feeling pretty well, but I still get tired. Friday night I didn't go to our high school football game. If I do some fairly major activity during the day, I need to pace myself...so I can't go to every activity that I would like to. Sometimes I just want to wrap myself up in a cozy blanket and take it easy...or take a nap! So that's usually what I do! I often have Brady or Kelsey join me during that time, so I'm rarely alone.
Wednesday we meet with the oncologist, so we'll know more of what we're doing in the future...and maybe know more about the surgery.
I am feeling pretty well, but I still get tired. Friday night I didn't go to our high school football game. If I do some fairly major activity during the day, I need to pace myself...so I can't go to every activity that I would like to. Sometimes I just want to wrap myself up in a cozy blanket and take it easy...or take a nap! So that's usually what I do! I often have Brady or Kelsey join me during that time, so I'm rarely alone.
Wednesday we meet with the oncologist, so we'll know more of what we're doing in the future...and maybe know more about the surgery.
Friday, December 3, 2010
Friday's News
It is Friday afternoon. In just a few minutes I go to the cancer center to get my PICC line flushed--happens every week. People ask how long I will have this in--but I guess until they aren't planning to draw blood or give me more chemo (if they decide that's what I need), they're going to leave it in.
Spence has given you the bulk of our news for the week. He does such a good job of explaining things--I'm always glad when he can do that. It's because he asks SO MANY questions, and that's how he learns so much.
We are thrilled that the endosocopy went so well. We are glad too, to know the real reason why I can't swallow. Spence has strictly forbidden me from eating anything but very soft foods and liquids...but still I cheat sometimes and eat something. Like today Kelsey had some chips from Chipotle, and I ate two...and loved them (AND kept them down). Spence says I'm a rebel, and I know I am. Not only does he have to put up with taking care of me, he has to deal with my attitude too!
On Wednesday night we had a Relief Society Christmas party (sort of a party). We had a short program--a musical number and a Christmas message, and lots of food to eat. Of course, I got to look at all the food, and it all looked wonderful. I had to depent on others to sample it. :) We had lots of women attend. It was the first time I've been able to conduct a meeting like that since I've been sick. I had no idea how it would affect me, but it brought me to tears...to be there with those women whom I love, and who have been so caring to me. I broke down, and just felt so grateful to my Father in Heaven who has allowed me to come so far...and to be able to do some of those normal things again. I have those moments of just overwhelming gratitude. The goodness of God to me and to my family is just almost more than a person can comprehend.
Today I was able to go with a dear friend to the temple again...and that is always a huge lift for my spirits. I truly have so very much to be grateful for. Have a good weekend. Love to all, Louise
Spence has given you the bulk of our news for the week. He does such a good job of explaining things--I'm always glad when he can do that. It's because he asks SO MANY questions, and that's how he learns so much.
We are thrilled that the endosocopy went so well. We are glad too, to know the real reason why I can't swallow. Spence has strictly forbidden me from eating anything but very soft foods and liquids...but still I cheat sometimes and eat something. Like today Kelsey had some chips from Chipotle, and I ate two...and loved them (AND kept them down). Spence says I'm a rebel, and I know I am. Not only does he have to put up with taking care of me, he has to deal with my attitude too!
On Wednesday night we had a Relief Society Christmas party (sort of a party). We had a short program--a musical number and a Christmas message, and lots of food to eat. Of course, I got to look at all the food, and it all looked wonderful. I had to depent on others to sample it. :) We had lots of women attend. It was the first time I've been able to conduct a meeting like that since I've been sick. I had no idea how it would affect me, but it brought me to tears...to be there with those women whom I love, and who have been so caring to me. I broke down, and just felt so grateful to my Father in Heaven who has allowed me to come so far...and to be able to do some of those normal things again. I have those moments of just overwhelming gratitude. The goodness of God to me and to my family is just almost more than a person can comprehend.
Today I was able to go with a dear friend to the temple again...and that is always a huge lift for my spirits. I truly have so very much to be grateful for. Have a good weekend. Love to all, Louise
Wednesday, December 1, 2010
Endoscopy brings mostly good news
I'm Spence making this post at the request of Louise...not because she is sick but probably because she was mostly sedated when we talked to Dr. Lewkowitz after the endoscopy. Dr. Lewkowitz is our GI doctor who originally did the endoscopy when the esophageal tumor was discovered. He said that the good news was that the large (1 1/2 inch long) tumor he found 4 months ago, is completely gone. He saw no remnants or evidence of that tumor. Isn't that an answer to the many prayers you have all made for Louise?! But the other news is that bottom third of the esophagus had been really ulcerated and scarred by the radiation. That left the opening at the base of the esophagus, as it enters the stomach, to be about the width of a pencil. He showed me a picture of it. The normal size is 2 or 3 times that size. It looked like the walls of the esophagus were just swollen from the heat of the radiation. The doctor could not get the scope through the opening to inspect the stomach. The upper 2/3 of the esophagus were normal and looked healthy.
So this answers the big question of why Louise could not swallow. She can swallow but the solid food hits that pencil-size opening at the end of her esophagus and can go no further. That is why she has been throwing up most of the solid foods she has been eating. I think that she has not had much larger of an opening in her esophagus than she has now since probably back through May or June of this year. We are pretty sure that the tumor was shrunk in size after about 7-10 days into her radiation. That is when she received the complete relief from her year-long chest and back pain. Maybe at that time, before the esophagus became so damaged as it is now, could she eat some solid food.
So where do we go from here? Dr. Lewkowitz didn't feel like the small opening would would get much bigger on its own. He has a dilating procedure that he could do about 6 to 8 times that would open it up somewhat but would take a long time to do. I felt like his first choice as a solution was surgery. He told me right up front that she probably should have surgery to remove the bottom third of the esophagus to remove the area of tissue that had the tumor attached, so as to further insure that the tumor would not return. He then said it would also be a solution to opening up the esophagus since the upper 2/3 was in such good shape and would then give a normal size ending. The procedure would be to cut out the lower third of the esophagus and maybe the upper part of the stomach and then pull up and reattach the stomach to the upper esophagus. He didn't feel any intestine transplant to the esophagus was necessary. Though it would be a difficult surgery, it would not be as radical as originally conceived. Louise has so much courage and she, right off the bat, said she thought that was the best solution. It would prevent any cancer from coming back in that area and would again give her the ability to eat solid foods.
Dr. Lewkowitz did a "dusting" of the area where the tumor had once been which he is sending to the lab. The results of that test will be like a pathology report (he called it cytology) telling if there is cancer still there. He also said we needed to get a pet scan which tells of any cancer remaining in the body. We knew that and it is set to be done in early January. When Dr. Lewkowitz gets the cytology report next Monday he will call Dr. Donovan, the oncologist and discuss the next steps in this journey to good health. We meet with Dr. Donovan next Wednesday, the 8th and that is when we might get more answers.
The one question that still didn't get answered is what kind of shape her stomach is in. We were warned that the upper part of the stomach would receive the effects of the radiation. We feel the radiation and probably the chemo also caused Louise's stomach at week 5 no longer to tolerate much food volume at any point in time. That is why she was put on a pump to dribble in the nutrients only as fast as her stomach could cope. We have moved that pump speed up recently and had no effects. So we are going to continue to increase the volume to see if it has now healed to the point that she could go back to the gravity feed bags or even getting all nutrients from 5 bottles of Ensure per day taken orally. That would improve her quality of life to go from being tethered to a food bag 24 hours a day to drinking her nutrients most of the time.
So that is the long version of the story for now. Louise and I are still absolutely thrilled that this second test (endoscopy) confirmed the CT scan that this big bad ugly tumor is gone and with it hopefully all cancer in her body is gone. What a fantastic gift. We rejoice with you that she has been so blessed by Heavenly Father and by modern medicine! Thanks again for your prayers and positive thoughts. They are all so important and each one cherished.
Love, Spence
So this answers the big question of why Louise could not swallow. She can swallow but the solid food hits that pencil-size opening at the end of her esophagus and can go no further. That is why she has been throwing up most of the solid foods she has been eating. I think that she has not had much larger of an opening in her esophagus than she has now since probably back through May or June of this year. We are pretty sure that the tumor was shrunk in size after about 7-10 days into her radiation. That is when she received the complete relief from her year-long chest and back pain. Maybe at that time, before the esophagus became so damaged as it is now, could she eat some solid food.
So where do we go from here? Dr. Lewkowitz didn't feel like the small opening would would get much bigger on its own. He has a dilating procedure that he could do about 6 to 8 times that would open it up somewhat but would take a long time to do. I felt like his first choice as a solution was surgery. He told me right up front that she probably should have surgery to remove the bottom third of the esophagus to remove the area of tissue that had the tumor attached, so as to further insure that the tumor would not return. He then said it would also be a solution to opening up the esophagus since the upper 2/3 was in such good shape and would then give a normal size ending. The procedure would be to cut out the lower third of the esophagus and maybe the upper part of the stomach and then pull up and reattach the stomach to the upper esophagus. He didn't feel any intestine transplant to the esophagus was necessary. Though it would be a difficult surgery, it would not be as radical as originally conceived. Louise has so much courage and she, right off the bat, said she thought that was the best solution. It would prevent any cancer from coming back in that area and would again give her the ability to eat solid foods.
Dr. Lewkowitz did a "dusting" of the area where the tumor had once been which he is sending to the lab. The results of that test will be like a pathology report (he called it cytology) telling if there is cancer still there. He also said we needed to get a pet scan which tells of any cancer remaining in the body. We knew that and it is set to be done in early January. When Dr. Lewkowitz gets the cytology report next Monday he will call Dr. Donovan, the oncologist and discuss the next steps in this journey to good health. We meet with Dr. Donovan next Wednesday, the 8th and that is when we might get more answers.
The one question that still didn't get answered is what kind of shape her stomach is in. We were warned that the upper part of the stomach would receive the effects of the radiation. We feel the radiation and probably the chemo also caused Louise's stomach at week 5 no longer to tolerate much food volume at any point in time. That is why she was put on a pump to dribble in the nutrients only as fast as her stomach could cope. We have moved that pump speed up recently and had no effects. So we are going to continue to increase the volume to see if it has now healed to the point that she could go back to the gravity feed bags or even getting all nutrients from 5 bottles of Ensure per day taken orally. That would improve her quality of life to go from being tethered to a food bag 24 hours a day to drinking her nutrients most of the time.
So that is the long version of the story for now. Louise and I are still absolutely thrilled that this second test (endoscopy) confirmed the CT scan that this big bad ugly tumor is gone and with it hopefully all cancer in her body is gone. What a fantastic gift. We rejoice with you that she has been so blessed by Heavenly Father and by modern medicine! Thanks again for your prayers and positive thoughts. They are all so important and each one cherished.
Love, Spence
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