It is fairly early on Sunday morning. I thought I would write in here for sure yesterday, and I was doing pretty well. Then late afternoon I started feeling kind of yucky...and mostly just slept on and off for the rest of the evening. In fact, Spence had done way too much yardwork, so the two of us were fairly worthless. Thank heavens for Brady, who put together dinner and cleaned it up. He held us together! :)
I may download my pictures later today, but just wanted to do a quick update this morning. I had a few phone calls yesterday, and really enjoyed talking to my sister, Susan, who lives in France. We talked for an HOUR! As I have said before, she has been very attentive to me, and I really appreciate that.
This has been my time to practice saying "yes to no." I have had some phone calls from people who wanted to come see me. Because of my low white blood cell count, I really have to say no...and stay isolated. That is way HARD for me...especially when dear friends came in from out of town and wanted to visit. But I did it, and hope that alll of this isolation will rebuild my immune system. I like to be with people, and I hate to miss out on anything fun! :)So, for now, I'll just say good morning, and hope that you all have a very pleasant and uplifting day. Love you, Louise
Sunday, October 10, 2010
Thursday, October 7, 2010
A Slight Glitch in the Plans...
Well, here are a few pictures of the day. You need to celebrate every little victory. Sometimes we wait for EVERYTHING to work out right...and then we miss out on celebrations along the way. That's no good. :) Spence brought me the movie, "Pollyanna" (fun stuff!) and Kelsey brought me my favorite flowers, Stargazer Lilies! I just noticed for the first time as I walked into the building this saying. They live those words at the Piper Center each and every day.
What did I tell you about anticipating? Things just never are quite the way you think they're going to be! Every week before I do chemo, they have to run blood tests, to make sure that my white blood count is high enough. Every week they have been just fine to do chemo...except for today. Today my white blood cell count was low. That could mean that they would postpone doing chemo because it might be too hard on my body. However, they consulted with the doctor and went ahead with the chemo. Because of my white blood cell count being lower, they know that I am in a "compromised" position, to fight infection. So, I am now in lock-down hibernation, imposed on MYSELF! (also imposed by a few other key people in my family and some of my most protective cancer helpers at the Center) I can't have visitors or go places, except to the Piper Center. I could feel pretty yucky this weekend, but am praying that I won't feel too badly.
I have had another pretty good day at home. Even though things didn't go quite as planned, we had fun celebrating at chemo and radiation, celebrating the last treatment, we hope, for forever! SO I'm going to include some pictures, and hope they work out. I think you should at least VISIT a cancer center--it is incredible the love and outpouring of genuine concern that you feel there...and it's for everyone. They're all pulling for you! Love to all of you wonderful people!
Wednesday, October 6, 2010
Tonight is that much-anticipated night before the BIG DAY! Sometimes anticipation is much greater than the actual event. Since I don't know HOW I'll be feeling, I'm just very thankful that I'll be THROUGH. When I think of the agonizing hours and days and months that others go through, I know mine hasn't been as big a trial...but it has STILL been a trial to me.I know there is still suffering and yucky days to come, but I am thankful that tomorrow is the last day of treatments. HOORAY! :) I get teary-eyed over "leaving" the people who have helped me through each day. They are amazing people...and bless lives constantly. I feel like I have a whole new group of friends that have experienced things with me that I've never experienced before. Again, in another way I am richly blessed.
Kelsey and Brady are normal children, don't get me wrong, but they are also fabulous helps. They help me through taking medicines that I don't want to. Tonight, Brady had basketball practice, and I got a little faint before he left. He told me that he would be totally fine to miss practice, just to stay here with me. He's a sweetheart. I am including a picture of each of them in here, since I was talking about them. Here am I several weeks ago with Kelsey, and then here is crazy Brady, with my college roommate, Suzy Jensen. CUTE KIDS!!
Chad Cherrington, who has been my neighbor for all our life here in Scottsdale, went with me to treatments today. I'll post some pictures tomorrow. Chad and I are very close, and can talk and laugh about just about anything. We had a great time being in the chemo room. Chad even asked if he could have an IV bag, so he would look like he belonged there. :) We never run out of things to talk to--he is a wonderful friend and so close he is like family too. My family is expanding...:) Well, until tomorrow, my party day, good night, sweet dreams and I love you all!
Tuesday, October 5, 2010
Hail on Tuesday!
Hi Guys! Pretty soon my days are going to be like today. I was in and out of radiation, and that was all I had. I loved it! (I willl REALLY enjoy the days when I have nothing to go to!) My sister-in-law, Marti Jones, took me today...and it was very nice to be with her. We sat and visited for quite a while afterwards. I loved being with her. I like being able to share with so many people how they do the radiation, etc.--I think it helps people to understand better what I'm going through. I am so thankful they are so interested in it all!
I played the piano today, did some reading--I got this really cool book called Anti-Cancer, and I think I will learn a lot from it. Hopefully I can improve some of my habits...and live a healthier life. Never fear all you who know me too well--I will ALWAYS have several vices!!
I also went somewhere other than the Piper Center--that was a definite YES!! Kelsey and I went to JO-Ann's, and did a little shopping. It felt wonderful to actually drive on the freeway, instead of driving the same old way to Piper! :)
We had the craziest day of weather here in Scottsdale. Arizona can be pretty much the same--dry, hot days, but every now and then nature bursts through with quite the surprising and dramatic weather. Today we got golf ball sized hail really coming down. Then it rained quite a bit, then it hailed some more. We love any change in weather, but this caused quite a bit of damage. That is when it is nice to be safe and sound (or so you think) in your home.
Well, that was my Tuesday. I felt pretty good, I am thankful for the things I could do...and I am so very thankful that I only have 2 more days of therapy. Didn't Spence do a great job last night describing what's going on with me? I have always admired his ability to explain things clearly. :) Love to all, Louise
I played the piano today, did some reading--I got this really cool book called Anti-Cancer, and I think I will learn a lot from it. Hopefully I can improve some of my habits...and live a healthier life. Never fear all you who know me too well--I will ALWAYS have several vices!!
I also went somewhere other than the Piper Center--that was a definite YES!! Kelsey and I went to JO-Ann's, and did a little shopping. It felt wonderful to actually drive on the freeway, instead of driving the same old way to Piper! :)
We had the craziest day of weather here in Scottsdale. Arizona can be pretty much the same--dry, hot days, but every now and then nature bursts through with quite the surprising and dramatic weather. Today we got golf ball sized hail really coming down. Then it rained quite a bit, then it hailed some more. We love any change in weather, but this caused quite a bit of damage. That is when it is nice to be safe and sound (or so you think) in your home.
Well, that was my Tuesday. I felt pretty good, I am thankful for the things I could do...and I am so very thankful that I only have 2 more days of therapy. Didn't Spence do a great job last night describing what's going on with me? I have always admired his ability to explain things clearly. :) Love to all, Louise
Monday, October 4, 2010
My "Superwoman's" medical status and longer vacation!
Hi! Superman here (more like Stupidman). We had just watched an old "I Love Lucy" episode where Lucy dressed up as Superman to appear at little Rickie's party because the real Superman couldn't make it. She tried to jump through the front window from a ledge 3 stories high but didn't do so when she saw the real Superman already at the party. So I guess I tried to do the same dumb thing unintentionally but only the ladder made it through the front window. I watched it go through as I was laying on my back.
Anyway, I wanted to give you a medical update and a brief idea of where Louise is headed once the chemo and radiation finish up this week.
Many of you wonder why she is still having it in week 7 when it was only supposed to be 6 weeks. From the beginning she was supposed to have 33 radiation sessions. She skipped labor day, so that meant that in the 7th week she would have a make-up session. The chemo department said she should not have 4 sessions of radiation without a chemo treatment so they scheduled a final chemo session for Thursday. They have told us all along that the chemo enhances the radiation and vice-versa. They tell us that the radiation will continue to radiate in the cancer cells after radiation is over because of the set-up of the chemo on the cells. I don't understand how all that works but then I also don't understand why 33 days of a radiation gun doesn't burn a hole right through her either. So I work by faith that they know what they are doing.
Today Louise and I met with Dr. Racine, the radiation oncologist, with whom we have met every Monday. She told us that she would not have just 6 weeks after chemo and radiation to heal, but more like 3 months. They would not give her the pet scan until 3 months later. She said it would take that long for the radiation and the chemo to completely leave the body and it would give the body enough time to repair itself and get the immune system functioning at full strength again. She felt like the petscan would pick up inflamation and even the radiation as "false reads" for cancer if they had the test any earlier. She did say that other scans could be done after 6 weeks like a catscan or an MRI. She also thought the GI doctor should do another endoscopy some time in that 3 month period to assess the size or existence of the tumor. But she said the surgery would not be done for at least 3 more months (if it is needed) because Louise would need to be full strength for the surgery. She emphasized how difficult this surgery is and how many risks there are and she is really hoping it won't be necessary. We were very pleased to know that Louise would be able to go through Thanksgiving and Christmas without surgery to ruin it. It would more likely be the end of January. I asked how safe it was to go that long without chemo. She said that the effects of the chemo and radiation would go well into the 3 month waiting period and this type of cancer was not a particularly fast growing. We should not worry about that at all.
So that is kind of our new schedule to look at. This Thursday will be the last day of radiation and chemo and I would also think she would not need to be hydrated 3 times a week either. We look so forward to this "vacation" period coming up where she can now totally recover from fire and poison she has so courageously endured.
Let me give you my "caregiver" view of her present state. She endured almost 5 weeks with mild effects of the treatment. Saturdays were always tough days for her but Sundays would get better. In the last two weeks, Fridays were tough days and she'd hit the worst time on Saturday evenings and nights. Last Saturday night she was up feeling crummy most of the night. She has been really zapped of energy most of the days now. Almost two weeks ago I think the radiation (that does hit part of her upper stomach) and the chemo did a job on her stomach lining and peristaltic muscles that move the food along. If she put any amount of food in the stomach she would get violently nauseated and would throw up. The doctors ordered a pump for her that would take her carnation calorie formula and would drip it into her system at 50 mil per hour for 20 hours per day. Overnight it gives her half of what she needs in a 24 hour period. The slow drip fakes out the stomach so it never feels like it is getting loaded up. This also means she takes almost nothing in orally except water with a little flavoring. With anti-nausea pills and the drip system, she has avoided most nausea for the last 10 days. She is dealing with many other problems though. She still has diarrhea, thrush, a painful esophagus, a gag sensation at swallowing anything and for the last 4 days a new pain in the back right at the level of her tumor. We give her liquid advil in her food tube for that 3 times a day. It does eliminate the pain but the pain comes back every time it wears off. The oncologist assured us that pain was not cancer in the back. She said if the cancer were spreading through the lymph and blood it would be too much of a coincidence that it would loge in the back at the very level of the tumor. She felt like it was more likely to be from the effects of radiation on back tissue since that was where the radiation was aiming.
I know this is getting long so I will quit. I just want to say again how amazing Louise has been through all of this. No one really knows but her how miserable it has been for her. How would you like to have double or triple flu for 7 weeks and be tethered to a pole and bag of formula for so many weeks. How much she wants to bite into the chicken and jello that the Barnetts brought us tonight but can't even try a morsel. But she just goes on enduring with hardly a complaint. I love her so very much. It has taken a lot out of me to see her suffer like she has. Sometimes I lay by her side and don't sleep. I just watch her enduring and worry about her next run to the bathroom. But she smiles and tries to reassure me as well as possible.
Thanks again to all of you who have flown in and stayed with us and done so much for us physically and emotionally. Thanks to so many who have brought so many meals we can't keep up with them all. Brady was bemoaning all the weight he has put on lately because of these meals. Thanks for so you that have taken her to therapy each day. Thanks for the many wonderful visits. You all have won a place in heaven for your love and thoughtfulness. Love to all, Spence
Anyway, I wanted to give you a medical update and a brief idea of where Louise is headed once the chemo and radiation finish up this week.
Many of you wonder why she is still having it in week 7 when it was only supposed to be 6 weeks. From the beginning she was supposed to have 33 radiation sessions. She skipped labor day, so that meant that in the 7th week she would have a make-up session. The chemo department said she should not have 4 sessions of radiation without a chemo treatment so they scheduled a final chemo session for Thursday. They have told us all along that the chemo enhances the radiation and vice-versa. They tell us that the radiation will continue to radiate in the cancer cells after radiation is over because of the set-up of the chemo on the cells. I don't understand how all that works but then I also don't understand why 33 days of a radiation gun doesn't burn a hole right through her either. So I work by faith that they know what they are doing.
Today Louise and I met with Dr. Racine, the radiation oncologist, with whom we have met every Monday. She told us that she would not have just 6 weeks after chemo and radiation to heal, but more like 3 months. They would not give her the pet scan until 3 months later. She said it would take that long for the radiation and the chemo to completely leave the body and it would give the body enough time to repair itself and get the immune system functioning at full strength again. She felt like the petscan would pick up inflamation and even the radiation as "false reads" for cancer if they had the test any earlier. She did say that other scans could be done after 6 weeks like a catscan or an MRI. She also thought the GI doctor should do another endoscopy some time in that 3 month period to assess the size or existence of the tumor. But she said the surgery would not be done for at least 3 more months (if it is needed) because Louise would need to be full strength for the surgery. She emphasized how difficult this surgery is and how many risks there are and she is really hoping it won't be necessary. We were very pleased to know that Louise would be able to go through Thanksgiving and Christmas without surgery to ruin it. It would more likely be the end of January. I asked how safe it was to go that long without chemo. She said that the effects of the chemo and radiation would go well into the 3 month waiting period and this type of cancer was not a particularly fast growing. We should not worry about that at all.
So that is kind of our new schedule to look at. This Thursday will be the last day of radiation and chemo and I would also think she would not need to be hydrated 3 times a week either. We look so forward to this "vacation" period coming up where she can now totally recover from fire and poison she has so courageously endured.
Let me give you my "caregiver" view of her present state. She endured almost 5 weeks with mild effects of the treatment. Saturdays were always tough days for her but Sundays would get better. In the last two weeks, Fridays were tough days and she'd hit the worst time on Saturday evenings and nights. Last Saturday night she was up feeling crummy most of the night. She has been really zapped of energy most of the days now. Almost two weeks ago I think the radiation (that does hit part of her upper stomach) and the chemo did a job on her stomach lining and peristaltic muscles that move the food along. If she put any amount of food in the stomach she would get violently nauseated and would throw up. The doctors ordered a pump for her that would take her carnation calorie formula and would drip it into her system at 50 mil per hour for 20 hours per day. Overnight it gives her half of what she needs in a 24 hour period. The slow drip fakes out the stomach so it never feels like it is getting loaded up. This also means she takes almost nothing in orally except water with a little flavoring. With anti-nausea pills and the drip system, she has avoided most nausea for the last 10 days. She is dealing with many other problems though. She still has diarrhea, thrush, a painful esophagus, a gag sensation at swallowing anything and for the last 4 days a new pain in the back right at the level of her tumor. We give her liquid advil in her food tube for that 3 times a day. It does eliminate the pain but the pain comes back every time it wears off. The oncologist assured us that pain was not cancer in the back. She said if the cancer were spreading through the lymph and blood it would be too much of a coincidence that it would loge in the back at the very level of the tumor. She felt like it was more likely to be from the effects of radiation on back tissue since that was where the radiation was aiming.
I know this is getting long so I will quit. I just want to say again how amazing Louise has been through all of this. No one really knows but her how miserable it has been for her. How would you like to have double or triple flu for 7 weeks and be tethered to a pole and bag of formula for so many weeks. How much she wants to bite into the chicken and jello that the Barnetts brought us tonight but can't even try a morsel. But she just goes on enduring with hardly a complaint. I love her so very much. It has taken a lot out of me to see her suffer like she has. Sometimes I lay by her side and don't sleep. I just watch her enduring and worry about her next run to the bathroom. But she smiles and tries to reassure me as well as possible.
Thanks again to all of you who have flown in and stayed with us and done so much for us physically and emotionally. Thanks to so many who have brought so many meals we can't keep up with them all. Brady was bemoaning all the weight he has put on lately because of these meals. Thanks for so you that have taken her to therapy each day. Thanks for the many wonderful visits. You all have won a place in heaven for your love and thoughtfulness. Love to all, Spence
Sunday, October 3, 2010
One More Week to go!
We loved all the responses about Superman! I definitely think the best response was to "send that 13-year-old up on the roof." Sometimes if we "only had a brain!" My sister-in-law, Nancy, asked how I was doing. Weekends are tough--that's all I can say. I was in pain, I now have thrush in my mouth (Emily, my daughter, told us that is a pretty common side effect in this type of cancer),and I just don't feel so well. Today I have been up more--it seems like on Saturday that I just sleep from one nap to the next! There are all sorts of different things that my family does to distract me from pain. Most of all, they just let me sleep. But Brady comes and plays games with me--of course, he's smarter and faster than me, so he always beats me...but I'm going to put a picture of us playing "Speed" together. He's Speedy, and I'm Slowey! Kelsey just helps in any way possible, and is always concerned how I slept and how I feel. She is super thoughtful. Like I said last night, Spence is there for me a ton. So my family is taking care of me...and hopefully Monday things will be feeling better again. I love you all--have a good day...and know that this is our last week of treatments for now. HOORAY!! Love you lots, Louise
Saturday, October 2, 2010
Superman Lives at MY house
There is no doubt after today that the guy with the red cape lives here at my very house. If you could have seen all that Spence did today, while I slept from one nap to another, you would definitely know that is true. Today was General COnference, which means that Spence watched 3 2-hour sessions. In between that, he took Brady to a basketball game, and helped Brady with the lawn. Right before he left about 4:30 this afternoon, he was trying to get some toilet paper off our roof, and the ladder that he had propped against our wall, got wobbly and fell through our dining room window, shattering glass everywhere. Fortunately, he had pushed away from the wall, and fell into our garden, instead of into the glass. It made the most awful sound--scary times. When he got home after taking Brady to the priesthood session tonight, he had to go to Home Depot, and buy stuff to fix the window...then spend the time doing that. Plus he had a major clean-up job to do in the dining room. He also cleaned some carpet for me, and he has prepared different medicines for me to take all day long. (I am NOT a good patient, and hate taking medicines...so that's another trial for Superman)He's helped me with wash, with changing my bed, etc. There is no doubt in my mind that he earns the title SUPER in every way...and he's so nice, even with all the pressures he has. I love you, Spence--you really earn your star EVERY day, but today you really did! :) He wanted to re-enact the window-crashing incident for the sake of pictures, but we all decided that probably wasn't the smartest idea. :) Happy Sabbath to all of you!
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