I was struggling with what I want for Tyler and what I might think the Lord wants. I know it's okay for me to ask for him to be healed and for him to be comforted and strengthened through this trial. The it is up to the Lord how it turns out and I'll be okay with it. I look forward to going to the temple and having that peace and stillness in my spirit again.
I had the sharp pain in my collarbone again. It was so sharp I had to stop what I was doing and push against it. I haven't had this much pain since last January. There is a niggling in the back of my mind that wonders if the cancer is in my bones. I'm going to snuff that niggling thought and not borrow trouble.
I told my class about Irene Gut today. I wish I could climb inside their minds and hear what they're thinking.
The doctor asked me to come in for a calcium test to see where my levels are. I am hoping to have one night of good sleep. I haven't had one in so long. I know I should stop complaining - I really am blessed in so many ways. My spirit has been refreshed tonight and for that I am happy beyond words.
Showing posts with label cancer is hard. Show all posts
Showing posts with label cancer is hard. Show all posts
Sunday, May 22, 2011
Sunday, May 1, 2011
January 29, 2007
Michelle researched cows, chicken, wheat, corn - etc today. It was amazing. I wrote a paper about it. The difference was that she was excited about having a farm for our next house and so she did all of the work for it and found out what she could.
Nicole wants to make snowflakes tomorrow and drop them from the top of the stair railing. She is always wanting to make things and hang them up to beautify the house.
Spielberg worked on his Science Fair project. It involves levers and how to balance a heavy and light object.
B~ worked late tonight, but came home for Family Night and then went back to work.
Ellie's nose is still runny all the time, but she lets you wipe it if you say, "Noses." She says beebee for binky, ba-ba for bottle, ea for eat, dy-dy for Tyler and dada for dad, mom for mom, and nye-nye for night-night.
I am so tired of being stressed-out and having no desire to do anything. Only the kids keep me from hiding in bed all day. At the same time I feel this way, I also wish I could grab myself by the shoulders and give me a good shaking or something. I seriously feel like I have mud for brains sometimes. I can understand autistic behavior - when my world doesn't make sense I feel an overwhelming desire to bang my head against something. I never do it, but I wonder if it might be helpful or at least somewhat satisfying.
Back to real life - I did finish How Children Learn and have started to write a paper on it. I long to write well, not just the bits of reporting on what the kids did today - the real heart and soul meaty kind of writing that brings you into the moment and makes it really live. Sigh...
Nicole wants to make snowflakes tomorrow and drop them from the top of the stair railing. She is always wanting to make things and hang them up to beautify the house.
Spielberg worked on his Science Fair project. It involves levers and how to balance a heavy and light object.
B~ worked late tonight, but came home for Family Night and then went back to work.
Ellie's nose is still runny all the time, but she lets you wipe it if you say, "Noses." She says beebee for binky, ba-ba for bottle, ea for eat, dy-dy for Tyler and dada for dad, mom for mom, and nye-nye for night-night.
I am so tired of being stressed-out and having no desire to do anything. Only the kids keep me from hiding in bed all day. At the same time I feel this way, I also wish I could grab myself by the shoulders and give me a good shaking or something. I seriously feel like I have mud for brains sometimes. I can understand autistic behavior - when my world doesn't make sense I feel an overwhelming desire to bang my head against something. I never do it, but I wonder if it might be helpful or at least somewhat satisfying.
Back to real life - I did finish How Children Learn and have started to write a paper on it. I long to write well, not just the bits of reporting on what the kids did today - the real heart and soul meaty kind of writing that brings you into the moment and makes it really live. Sigh...
January 27, 2007
I have a small fan club. There are two people in it, maybe 2 1/2. Ellie has suddenly decided that she must be where I am. She loves running her fingers in my hair - especially at the nape of my neck with her right hand. Those same fingers tug mercilessly on her own short hair whenever she is upset or nervous. She has developed a fascination with the family pictures in the hall. She pulls me by the hand into the hall and then grunts to be picked up. She points at the pictures and says "Who's at?" She will look at different pictures, but never says anything else.
Person #2 in my fan club would have to be Tyler, although I am sure he would prefer to have me snuggle with him more and to leave his chemo-chapped lips alone (enough with the Vaseline, mom!). He had a rough day and was very nauseous. He threw up three or four times. It's a blessing that he has a gastrostomy button. It really helps to alleviate the pressure.
Nicole is not a fan of me today. According to her, I'm a picky, picky person because I want her to shower the day before church and change her underwear. i interrupted her while she was making important repairs to a craft project. Then, she accidentally caught my throat with her shoulder when I hugged her goodnight. She had a little meltdown over her covers being very messy every single morning when she wakes up. "It's so unfair!" she screamed at me. "Just look at Michelle, her bed is never like mine, why does it do that?" (As though the bed is messing itself up every night).
Michelle isn't particularly fond of me today either. I happen to think it's a good idea to put things where they go rather than letting them hit the floor wherever you may be. She often leaves a trail of items and it is easy to see where she has been. C~ was with us all afternoon while her mom took their dog to the vet. He will probably have to be put down. That's a difficult thing, a pet becomes part of the family.
Spielberg might be the 1/2 of the 2 1/2. He had a good time at the BYU game today. It was the "whiteout" against Air Force. Everyone wore white and the stadium was nearly sold out. He and his friend B~ made up and rode to the game together, afterwards he and B~ (dad) went to Macey's for ice cream. I read to him from The Alliance - he is starting to get into it. It's a little difficult for him to follow.
B~ is definitely not a fan of mine today. I bumped a curb last night when I was out with Melanie and the hub cap rolled off the passenger tire. I only made 6 right turns with curbs, but I couldn't remember where it happened. I feel terrible. He got his hair cut and looks very nice. He never seems to age except for his salt and pepper hair.
And me - I don't belong to my fan club today either. Maybe tomorrow, maybe Monday. Today, no. I just need to let a little air out of my stress balloon. I have somehow become stuck in a pattern of being exasperated, frustrated, worn out, snappish, eating poorly, paying attention to things that don't really matter while neglecting those that do. To quote Susan P, "Stop the insanity!" A good primal scream might be in order here. I realize that I am patient with others only to the extent that I am patient with myself. How do I be more accepting of me and open my heart to others? I hope my kids feel that I love and not that I judge them, B~ too. I doubt it.
Can I have a do-over? And keep the perspective I'm gaining? I'd like to do it better, the whole darn thing - LIFE!
Person #2 in my fan club would have to be Tyler, although I am sure he would prefer to have me snuggle with him more and to leave his chemo-chapped lips alone (enough with the Vaseline, mom!). He had a rough day and was very nauseous. He threw up three or four times. It's a blessing that he has a gastrostomy button. It really helps to alleviate the pressure.
Nicole is not a fan of me today. According to her, I'm a picky, picky person because I want her to shower the day before church and change her underwear. i interrupted her while she was making important repairs to a craft project. Then, she accidentally caught my throat with her shoulder when I hugged her goodnight. She had a little meltdown over her covers being very messy every single morning when she wakes up. "It's so unfair!" she screamed at me. "Just look at Michelle, her bed is never like mine, why does it do that?" (As though the bed is messing itself up every night).
Michelle isn't particularly fond of me today either. I happen to think it's a good idea to put things where they go rather than letting them hit the floor wherever you may be. She often leaves a trail of items and it is easy to see where she has been. C~ was with us all afternoon while her mom took their dog to the vet. He will probably have to be put down. That's a difficult thing, a pet becomes part of the family.
Spielberg might be the 1/2 of the 2 1/2. He had a good time at the BYU game today. It was the "whiteout" against Air Force. Everyone wore white and the stadium was nearly sold out. He and his friend B~ made up and rode to the game together, afterwards he and B~ (dad) went to Macey's for ice cream. I read to him from The Alliance - he is starting to get into it. It's a little difficult for him to follow.
B~ is definitely not a fan of mine today. I bumped a curb last night when I was out with Melanie and the hub cap rolled off the passenger tire. I only made 6 right turns with curbs, but I couldn't remember where it happened. I feel terrible. He got his hair cut and looks very nice. He never seems to age except for his salt and pepper hair.
And me - I don't belong to my fan club today either. Maybe tomorrow, maybe Monday. Today, no. I just need to let a little air out of my stress balloon. I have somehow become stuck in a pattern of being exasperated, frustrated, worn out, snappish, eating poorly, paying attention to things that don't really matter while neglecting those that do. To quote Susan P, "Stop the insanity!" A good primal scream might be in order here. I realize that I am patient with others only to the extent that I am patient with myself. How do I be more accepting of me and open my heart to others? I hope my kids feel that I love and not that I judge them, B~ too. I doubt it.
Can I have a do-over? And keep the perspective I'm gaining? I'd like to do it better, the whole darn thing - LIFE!
January 18, 2007
Kenna came and colored my hair today. No more gray, at least for a few weeks.
I took Ty's blood pressure and it was 127/100 - probably not a valid reading. When we took him into chemo it was 176/116 - dangerously high. We figured out that it might be a renal artery problem. When he has been sitting for an hour, the artery in his right kidney starts sending out signals that it isn't getting enough blood flow and so the heart must work harder. They have prescribed a drug that should block that signal. The main concern is that the left kidney might be having trouble too and really needs the increased blood supply. They will monitor him closely and we will be careful that his is not sitting for long periods of time - it's probably a wonder that he made it home alive after last week's chemo (2 1/2 hours in the car!) All his numbers look good. Dr. Randall's nurse contacted Dr. Chen's office and sent all the treatment notes over for review. They should be contacting us soon to schedule an appointment with her.
My TSH is .02 - definitely hyperthyroid and suppressed. The uncomfortable swelling in my neck has finally gone away. Next week I'll get my thyroglobulin results.
Ellie was not doing so well so when I got home at 6:30 from Ty's marathon chemotherapy day, I bundled her up and went to the doctor's office. She hasn't lost any weight, but she's only had two wet diapers today and two diarrhea ones - both required baths. The doctor said that if she has diarrhea longer than 10-14 days, they'll have to culture it.
I have been reading a very inspiring book about Irene Gut. She was an extraordinary ordinary woman who made a difference to several Jews in WWII. I don't think I can rightly complain about any circumstance I am in - I will always be more fortunate than the eastern europeans of the 1940s.
Read to kids, practiced piano. Changed a boatload of diapers!
I took Ty's blood pressure and it was 127/100 - probably not a valid reading. When we took him into chemo it was 176/116 - dangerously high. We figured out that it might be a renal artery problem. When he has been sitting for an hour, the artery in his right kidney starts sending out signals that it isn't getting enough blood flow and so the heart must work harder. They have prescribed a drug that should block that signal. The main concern is that the left kidney might be having trouble too and really needs the increased blood supply. They will monitor him closely and we will be careful that his is not sitting for long periods of time - it's probably a wonder that he made it home alive after last week's chemo (2 1/2 hours in the car!) All his numbers look good. Dr. Randall's nurse contacted Dr. Chen's office and sent all the treatment notes over for review. They should be contacting us soon to schedule an appointment with her.
My TSH is .02 - definitely hyperthyroid and suppressed. The uncomfortable swelling in my neck has finally gone away. Next week I'll get my thyroglobulin results.
Ellie was not doing so well so when I got home at 6:30 from Ty's marathon chemotherapy day, I bundled her up and went to the doctor's office. She hasn't lost any weight, but she's only had two wet diapers today and two diarrhea ones - both required baths. The doctor said that if she has diarrhea longer than 10-14 days, they'll have to culture it.
I have been reading a very inspiring book about Irene Gut. She was an extraordinary ordinary woman who made a difference to several Jews in WWII. I don't think I can rightly complain about any circumstance I am in - I will always be more fortunate than the eastern europeans of the 1940s.
Read to kids, practiced piano. Changed a boatload of diapers!
January 17, 2007
Here it is 2 AM. THe days are not long enough! I submitted two papers for my 5 Pillar Certification. I attended a four hour USOE meeting for the State deafblind Plan and found that they are sneaking past a definition on hearing loss that does not include functional hearing impairment.
It may be my imagination, but I think Ty's tumor is smaller. I hope I'm right. He's running a low-grade fever - 100.4, they told us not to worry unless it gets to 100.8 and stays there for over an hour or goes up to 101.3.
I went to Dr. M~, she wants to do an MRI to see if my lymph nodes are smaller and a high resolution ultrasound of my neck in July. I had my blood drawn and she's going to check my levels.
Nicole had gymnastics, Michelle played at Sydnee's and Spielberg went to scouts.
Ellie might be a bit dehydrated. She's still having diarrhea and not many wet diapers. Her skin looks fine and she doesn't have a fever. Hopefully she'll be better tomorrow.
We gave Ty a haircut tonight. Boy, did he protest. I'm glad he voices his opinion, but it sure is funny that he gets just as mad about getting his hair cut as he does about going to the doctor.
Cape on neck, tight
Mist on hair, wet
Buzz on neck, tickle
Comb in hair, prickle
Leave me alone,
Go away!
My hair looks fine,
let it grow!
I'm telling you:
NO HAIRCUT!
Can't you hear me?
****
Chemo day tomorrow
poor Ty
poor us
four wasted hours
killing time
not cancer cells....
if only
It may be my imagination, but I think Ty's tumor is smaller. I hope I'm right. He's running a low-grade fever - 100.4, they told us not to worry unless it gets to 100.8 and stays there for over an hour or goes up to 101.3.
I went to Dr. M~, she wants to do an MRI to see if my lymph nodes are smaller and a high resolution ultrasound of my neck in July. I had my blood drawn and she's going to check my levels.
Nicole had gymnastics, Michelle played at Sydnee's and Spielberg went to scouts.
Ellie might be a bit dehydrated. She's still having diarrhea and not many wet diapers. Her skin looks fine and she doesn't have a fever. Hopefully she'll be better tomorrow.
We gave Ty a haircut tonight. Boy, did he protest. I'm glad he voices his opinion, but it sure is funny that he gets just as mad about getting his hair cut as he does about going to the doctor.
Cape on neck, tight
Mist on hair, wet
Buzz on neck, tickle
Comb in hair, prickle
Leave me alone,
Go away!
My hair looks fine,
let it grow!
I'm telling you:
NO HAIRCUT!
Can't you hear me?
****
Chemo day tomorrow
poor Ty
poor us
four wasted hours
killing time
not cancer cells....
if only
Wednesday, March 9, 2011
January 13, 2007
I had terrible insomnia last night and didn't fall asleep until about 5AM this morning. Not a very good way to start the day.
Tyler wasn't nauseous until about 11 PM tonight. I held he for quite awhile. We listened to a lot of music and did "arm dancing" today.
Spielberg went to a day camp at MD for scouts, then he and C~ went sledding down the drainage bowl at our old Stake Center. After dinner, he went over for a late night. While there, some other boy in the ward pressured him to look at something on the computer. He felt that he shouldn't and knew there was something going on. All of the sudden a horrible picture popped up on the screen-it was of a scary nature. When he came home, he realized hoe disturbed he was and that he couldn't get the image out of his mind. We sat on the couch in his room and discussed a number of things.
I tried to help him recognize that the Spirit had prompted him. We talked about what happens when we don't listen to those promptings. He came up with how he wished he'd handled it. We also talked about the importance of only letting good images into your mind (pornography for example). We also talked about peer pressure and ways to deal with it. Most importantly, we talked about dealing with our fears and relying on and trusting in Heavenly Father. I really enjoyed talking and sharing with him. He is a wonderful boy and I am very impressed by him. He commented that he tried to spare another boy from the same experience.
Our friends, the Ms~ came over and played Ticket to Ride with us. Michelle and Nicole showed off their gymnastics talents for them.
Michelle attended a friend's brother's basketball game, played, and played and invited Br~ (who happens to be a distant relative on my dad's side) over for dinner.
Nicole played in the snow with MJ. She was a very giggly girl today.
Ellie was funny as ever. Her arm seems just fine today, thank goodness. I think I changed 4-6 messy diapers today. I wonder if she is coming down with something.
I practiced piano and my handwriting today. I also studied Article One, Section 3 of the Constitution, a couple of pages from Cultural Literacy, and the Fourth Turning.
Dr. R~'s assistant, P~, phoned around noon to say that he would like to speak with us in person. We will be meeting with him Tuesday afternoon to discuss our options for treating Ty's tumor. I called his office to make sure that he had been updated on Tyler's progress and to tell him I had emailed Dr. S~ (of Florida) about Ty's situation. His response and overall feeling was that the chemo wasn't working and that we should consider changing his treatment. I have been doing a lot of research and double checking to make sure the pathology is correct on the tumor biopsy.
I'm sleepy tonight and so had better close before I fall asleep on the book and wake to an ink-covered face. Lastly, I must mention how great B~ is. He helps so much with everything here and even played errand-runner dropping off prescriptions, buying groceries, and picking up pizza for dinner.
Tyler wasn't nauseous until about 11 PM tonight. I held he for quite awhile. We listened to a lot of music and did "arm dancing" today.
Spielberg went to a day camp at MD for scouts, then he and C~ went sledding down the drainage bowl at our old Stake Center. After dinner, he went over for a late night. While there, some other boy in the ward pressured him to look at something on the computer. He felt that he shouldn't and knew there was something going on. All of the sudden a horrible picture popped up on the screen-it was of a scary nature. When he came home, he realized hoe disturbed he was and that he couldn't get the image out of his mind. We sat on the couch in his room and discussed a number of things.
I tried to help him recognize that the Spirit had prompted him. We talked about what happens when we don't listen to those promptings. He came up with how he wished he'd handled it. We also talked about the importance of only letting good images into your mind (pornography for example). We also talked about peer pressure and ways to deal with it. Most importantly, we talked about dealing with our fears and relying on and trusting in Heavenly Father. I really enjoyed talking and sharing with him. He is a wonderful boy and I am very impressed by him. He commented that he tried to spare another boy from the same experience.
Our friends, the Ms~ came over and played Ticket to Ride with us. Michelle and Nicole showed off their gymnastics talents for them.
Michelle attended a friend's brother's basketball game, played, and played and invited Br~ (who happens to be a distant relative on my dad's side) over for dinner.
Nicole played in the snow with MJ. She was a very giggly girl today.
Ellie was funny as ever. Her arm seems just fine today, thank goodness. I think I changed 4-6 messy diapers today. I wonder if she is coming down with something.
I practiced piano and my handwriting today. I also studied Article One, Section 3 of the Constitution, a couple of pages from Cultural Literacy, and the Fourth Turning.
Dr. R~'s assistant, P~, phoned around noon to say that he would like to speak with us in person. We will be meeting with him Tuesday afternoon to discuss our options for treating Ty's tumor. I called his office to make sure that he had been updated on Tyler's progress and to tell him I had emailed Dr. S~ (of Florida) about Ty's situation. His response and overall feeling was that the chemo wasn't working and that we should consider changing his treatment. I have been doing a lot of research and double checking to make sure the pathology is correct on the tumor biopsy.
I'm sleepy tonight and so had better close before I fall asleep on the book and wake to an ink-covered face. Lastly, I must mention how great B~ is. He helps so much with everything here and even played errand-runner dropping off prescriptions, buying groceries, and picking up pizza for dinner.
Tuesday, February 22, 2011
January 4, 2007
B~ and I have been married for 16 years today. After spending all day (7:30-4) at the hospital with Tyler, we enjoyed a nice dinner at Chili's - we even saved room for dessert. It is hard to believe that so much time has gone by.
About the hospital - we arrived at 8:30 and went to chemo so they could access his port for the IV contrast in CT. Small problem, his line had formed a clotted flap over it. They put in 40 mls of saline and couldn't get any blood back. Tyler tried to throw up twice before the CT. They finally decided it would be okay for the contrast to go through the line and sent us down for the scan. After the scan, Tyler tried to throw up three more times - it was awful. They injected TPA - a clot buster - into the line and let it sit for 30 minutes. It worked!
In the meanwhile, Tyler went through 2 pairs of pants, so B~ ran to Kmart and bought 3 more pairs of sweat pants. Most of the time we just sat there and I held and rocked Tyler.
I think he tried to throw up because he had so much volume in his stomach for the 800 mls of contrast for the CT scan. We happened to see the surgeon and he said that the tumor is bigger but that it appears the center is dying. They drew blood and since all his levels were okay, they ordered his fifth round of chemo. The tumor is now 18x16x12 ( a big difference from 10x10x6 just 12 weeks ago).
We are encouraged by this latest development. The doctors feel that it will soon begin to shrink or else it will continue to grow around the dead cells. Right now, his kidney, bowel, and bladder are functioning well enough to keep on trying chemo.
I am hopeful that the ward fast will help this tumor to shrink. Surgery is going to be a much harder option.
Oh Ty - I wish I could take it from you - all of it so you could run, play, and just be a 14 year old boy who thinks about football, basketball, skiing, and friends. I know those things aren't happiness - a family is, and ours is 16 today.
About the hospital - we arrived at 8:30 and went to chemo so they could access his port for the IV contrast in CT. Small problem, his line had formed a clotted flap over it. They put in 40 mls of saline and couldn't get any blood back. Tyler tried to throw up twice before the CT. They finally decided it would be okay for the contrast to go through the line and sent us down for the scan. After the scan, Tyler tried to throw up three more times - it was awful. They injected TPA - a clot buster - into the line and let it sit for 30 minutes. It worked!
In the meanwhile, Tyler went through 2 pairs of pants, so B~ ran to Kmart and bought 3 more pairs of sweat pants. Most of the time we just sat there and I held and rocked Tyler.
I think he tried to throw up because he had so much volume in his stomach for the 800 mls of contrast for the CT scan. We happened to see the surgeon and he said that the tumor is bigger but that it appears the center is dying. They drew blood and since all his levels were okay, they ordered his fifth round of chemo. The tumor is now 18x16x12 ( a big difference from 10x10x6 just 12 weeks ago).
We are encouraged by this latest development. The doctors feel that it will soon begin to shrink or else it will continue to grow around the dead cells. Right now, his kidney, bowel, and bladder are functioning well enough to keep on trying chemo.
I am hopeful that the ward fast will help this tumor to shrink. Surgery is going to be a much harder option.
Oh Ty - I wish I could take it from you - all of it so you could run, play, and just be a 14 year old boy who thinks about football, basketball, skiing, and friends. I know those things aren't happiness - a family is, and ours is 16 today.
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