I believe that certain people are brought into our lives for a reason. Some people are for lifetime friendships.... others for short-term friendships that serve a need at a certain time....some are just acquaintances that serve other needs.... and some are serendipitous meetings that make you go "wow". These "wow" meetings are the ones that I find very interesting - either there is something for you to learn or receive or something for you to teach or give and sometimes both.
I had one of those "wow" meetings recently. There is a woman at the cancer clinic who has the same schedule as me. We have our preliminary bloodwork and meetings with the doctor on the same day at the same time. We then have our chemo the next day on the same schedule (although she's just every 3 weeks). 3 weeks ago we ended up in the library together between bloodwork and doctor's appointments (there's usually about 1.5 hours in between). We started chatting last week and seemed to hit it off quite well. Then we met again the next day getting our chemo and we chatted some more. This is where it gets interesting...
"M" turns out to be from Dutch background and attends the same denominational church as me, although in a different city. For some reason, I felt compelled to show her pictures of my children (I don't usually show strangers pictures of my kids until I know them a bit better). When she saw that Ryan has Down syndrome, she shared with me that she works with Friendship Ministries in our church. Friendship Ministries is a program designed to include people with developmental disabilities in the church.
I met M again today while at the Clinic. Although I guess it's not surprising, it is interesting how having cancer strips away all the superficialty of conversations. Somehow talking about the weather and the latest tabloid romance (not that I really talk about that, but you get the drift) is less important. We were able to have an amazing talk today about some serious issues. M has found out in the past 2 weeks that her prognosis is not good. We talked about facing death, anger at the situation, worry about our kids, our faith in God - BIG topics. I learned a lot from her and I hope we can continue to share throughout our journeys.
Please remember M in your prayers as well. Although her children are older, they are not yet adults and it is a very tough situation for all.
And as an aside, my bloodcounts were borderline today, but they should go up again tomorrow so I'm OK for chemo.
Wednesday, July 26, 2006
Sunday, July 23, 2006
I'm back!
and you didn't even know I was gone. :) Just a quick update for now. I'll post more in the next day or two.
I just got back from Atlanta, GA. Tom and I went down for the National Down Syndrome Congress Conference and what a wonderful time we had!
Jan, a good on-line friend of mine that I've known since Ryan was born (her son, Nash, is 10 days older than Ryan) BEGGED me to come to the conference. (ok ok... she suggested it a few times and bent my rubber arm). And since it worked out with my chemo schedule, and we got a cheap flight, and we really needed to get away .... we went! What a wonderful time Tom and I had. It was so amazing to meet Jan and Nicole again. I've known both of them on-line since Ryan was born and have had the pleasure of meeting them before. Nicole was actually one of the very first people who responded to my post on the Down syndrome board on the internet. She is one of the warmest and most compassionate people I've ever met. Jan and I have shared 5 years of watching our sons grow up - we've shared therapy tips, commiserated over behaviour issues, discussed schooling issues - pretty much everything! I also got a chance to meet other on-line friends that I've never met before: Kris, Carol, Lisa and Karen. They are also incredible women who I've been blessed to know through my 5 year journey with Ryan. Carol was actually a keynote speaker at the conference - and I'll write about what she discussed at a later date. It is so amazing to meet someone that you've spoken on the phone with, emailed with, and shared the joys and challenges of raising a child with Down syndrome with. It's hard to describe to people sometimes - they can't believe that I'd fly so far to meet someone I've met on-line and know only that way. But it's really like meeting an old friend that you haven't seen in a while. I'll hopefully be able to share some pictures of my friends in the next couple of days. My camera died so I didn't get any good pictures.
One of the highlights of the conference was attending a session with Carrie and Sujeet - the couple I just posted about who got married. They shared stories about their lives, their courtship and their wedding. Their mothers spoke about how happy they are that their children found someone to share their lives with. They also spoke about the supports they've put in place to help Carrie and Sujeet live as independently as possible. What an inspiration!
And from a more personal point of view, it was wonderful to take a break. Just getting away was like a much needed vacation. I find that I need those mini-breaks - they do wonders at revitalizing me. And I really needed that at this time!
Tom and I at the banquet:
I just got back from Atlanta, GA. Tom and I went down for the National Down Syndrome Congress Conference and what a wonderful time we had!
Jan, a good on-line friend of mine that I've known since Ryan was born (her son, Nash, is 10 days older than Ryan) BEGGED me to come to the conference. (ok ok... she suggested it a few times and bent my rubber arm). And since it worked out with my chemo schedule, and we got a cheap flight, and we really needed to get away .... we went! What a wonderful time Tom and I had. It was so amazing to meet Jan and Nicole again. I've known both of them on-line since Ryan was born and have had the pleasure of meeting them before. Nicole was actually one of the very first people who responded to my post on the Down syndrome board on the internet. She is one of the warmest and most compassionate people I've ever met. Jan and I have shared 5 years of watching our sons grow up - we've shared therapy tips, commiserated over behaviour issues, discussed schooling issues - pretty much everything! I also got a chance to meet other on-line friends that I've never met before: Kris, Carol, Lisa and Karen. They are also incredible women who I've been blessed to know through my 5 year journey with Ryan. Carol was actually a keynote speaker at the conference - and I'll write about what she discussed at a later date. It is so amazing to meet someone that you've spoken on the phone with, emailed with, and shared the joys and challenges of raising a child with Down syndrome with. It's hard to describe to people sometimes - they can't believe that I'd fly so far to meet someone I've met on-line and know only that way. But it's really like meeting an old friend that you haven't seen in a while. I'll hopefully be able to share some pictures of my friends in the next couple of days. My camera died so I didn't get any good pictures.
One of the highlights of the conference was attending a session with Carrie and Sujeet - the couple I just posted about who got married. They shared stories about their lives, their courtship and their wedding. Their mothers spoke about how happy they are that their children found someone to share their lives with. They also spoke about the supports they've put in place to help Carrie and Sujeet live as independently as possible. What an inspiration!
And from a more personal point of view, it was wonderful to take a break. Just getting away was like a much needed vacation. I find that I need those mini-breaks - they do wonders at revitalizing me. And I really needed that at this time!
Tom and I at the banquet:
Monday, July 17, 2006
"A Very Special Wedding"
I love happy stories like this!
http://www.time.com/time/magazine/article/0,9171,1214946,00.html
It's a perfect morning for a wedding in tiny Dolgeville, N.Y. A soft breeze tames the July sun; birds do tremolos from above the clapboard cottages of a village so quaint it holds an annual Violet Festival. Beneath the narrow spire and wooden beams of the United Lutheran Presbyterian Parish, Carolyn Bergeron, 29, and Sujeet Desai, 25, are about to take their vows. "There is news today," says the Rev. James Paulson. "Love," he says, can't be stopped by cultural differences or different faiths. "Love can't be stopped by Down syndrome."
Carrie and Suj, as they're known, beam through much of the ceremony--their second, having already celebrated a Hindu ritual the week before--but the rest of the 140 people present, Pastor Paulson included, are fighting back tears. In the congregation, wearing expressions of awe and envy, are half a dozen friends from the National Down Syndrome Congress, which holds an annual meeting for adults with DS. Bergeron and Desai met at one of those sessions two years ago. ("I told my mom I wanted to date her," Desai recalls. "I was shy. I couldn't say anything, so Mom helped.") Both bride and groom are high achievers, advocates and role models within the DS community. She has given many inspirational speeches (often comparing herself to an oddly shaped tomato in her dad's garden--"different but just as juicy"). He performs on the piano, the clarinet and four other instruments. Both have led workshops in which they demonstrate black-belt mastery of martial arts (hers in karate, his in Taekwondo).
This generation of young adults with DS has shattered old ideas about what is possible for people who carry an extra 21st chromosome in their cells--the cause of DS--and what opportunities society owes them. They came of age in an era of early-intervention programs to spur physical and mental development--Desai began one at 7 weeks. Once in school, they were included in regular classrooms when possible and were offered tutoring and special classes when needed. Both bride and groom are high school graduates. Just as critical, this generation has benefited from medical care addressing the heart and gastrointestinal defects, eye problems, thyroid issues, obesity and other health woes that, for reasons that are poorly understood, often tag along with mental retardation as part of Down syndrome. The result: their average expected life span has doubled, from 25 in 1983 to 56 today. And as adults, they have had the Americans with Disabilities Act ensuring them a right to be accommodated in the workplace where possible.
While inclusion is the watchword for today's disabled Americans, social isolation remains a painful problem. "Once they leave high school, they can fall off the earth because of a lack of services," says Dennis McGuire, director of psychosocial services at the Adult Down Syndrome Center at Advocate Lutheran General Hospital in Park Ridge, Ill. "If they're stuck at home, they can end up feeling very much alone."
Carrie's mother Peggy became concerned about her daughter's social and romantic needs as Carrie entered adulthood. "When the loneliness began to loom around 21 and she saw her sister and brother having relationships and getting married, she longed for it," says Peggy. Group discussions at a nearby resource center for people with disabilities brought "some comfort," she says, but Carrie continued to talk about meeting her "Mr. Right." Says Peggy: "We never dreamed it would happen."
Sujeet's mother Sindoor, however, says she "had marriage in sight straightaway" once Sujeet expressed interest in Carrie. "We come from a different culture," she explains. As India-born Hindus, Sindoor and Sharad Desai, both dentists, "don't expect dating and breaking [up]." Nor did Sindoor wish to expose her vulnerable son to the emotional upheavals of serial entanglements.
With help from their families, who live about 90 minutes apart in upstate New York, the couple began dating. At a Valentine's Day party, "I had my eyes on her all the time," Sujeet recalls. Later that night, "I started to kiss her. She loved it!" The two began speaking by phone daily. Says Peggy: "They can talk about things"--like what they plan to eat for lunch that day--"that we'd get bored with." Finally, with plenty of plotting by both families, Sujeet popped the question onstage after he played a concert for people with disabilities, a moment that can be viewed on his website, Sujeet.com Says Carrie, who has exemplary verbal skills: "There are not many words to express how much I really love him. He's beyond words."
While love was blooming, the two families worked hard to create a system that might support an eventual marriage. There were few role models to follow. Many older adults with DS live in residential facilities that do not accommodate married couples. Another reason such marriages are rare--no one knows exactly how many there are--is that marital status can affect the amount of support that adults with disabilities receive from federal aid programs administered by the states. "People who might otherwise be interested in marriage don't want to risk losing their benefits," says Dr. William Schwab of Madison, Wis., who has worked as a consultant on sexuality issues for the National Down Syndrome Society.
Luckily for Carrie and Suj, New York State offers an innovative pilot program that allows individuals with developmental disabilities to design their own support plan, subject to state approval. The endlessly devoted Desais and Bergerons pressed for a plan that would allow the newlyweds to live together in their own apartment, located midway between the two family homes, and receive part-time aid with tasks like cooking. "They don't need baby sitting every hour," explains Sindoor. "What they need is money management and transportation" to part-time jobs, volunteer work, exercise classes and other activities. The "self-determination" program requires enormous initiative and hard work from the young couple, as well as those in their circle of support, but it allows them to take considerable responsibility for their own lives. "We want them to become as independent as they could be," says Sindoor, "so when we are not around, they can manage."
The most delicate questions arising from a marriage like this one concern sexuality and parenthood. Women and especially men with Down syndrome have low rates of fertility, but pregnancy is possible. Carrie reluctantly ruled it out, even before she met Suj, when her mother told her, correctly, that she would have a high risk of bearing a child with DS. "I just burst into tears," she recalls, "and then I said I would not have any children." A tubal ligation ensured the decision. But she says she and her new husband have other dreams to sustain them: "To continue with our speeches, to continue to make a difference in this world for people with special needs, to have some fun time too. And to take care of each other."
For more photos of the couple's Hindu wedding ceremony, go to time.com
http://www.time.com/time/magazine/article/0,9171,1214946,00.html
It's a perfect morning for a wedding in tiny Dolgeville, N.Y. A soft breeze tames the July sun; birds do tremolos from above the clapboard cottages of a village so quaint it holds an annual Violet Festival. Beneath the narrow spire and wooden beams of the United Lutheran Presbyterian Parish, Carolyn Bergeron, 29, and Sujeet Desai, 25, are about to take their vows. "There is news today," says the Rev. James Paulson. "Love," he says, can't be stopped by cultural differences or different faiths. "Love can't be stopped by Down syndrome."
Carrie and Suj, as they're known, beam through much of the ceremony--their second, having already celebrated a Hindu ritual the week before--but the rest of the 140 people present, Pastor Paulson included, are fighting back tears. In the congregation, wearing expressions of awe and envy, are half a dozen friends from the National Down Syndrome Congress, which holds an annual meeting for adults with DS. Bergeron and Desai met at one of those sessions two years ago. ("I told my mom I wanted to date her," Desai recalls. "I was shy. I couldn't say anything, so Mom helped.") Both bride and groom are high achievers, advocates and role models within the DS community. She has given many inspirational speeches (often comparing herself to an oddly shaped tomato in her dad's garden--"different but just as juicy"). He performs on the piano, the clarinet and four other instruments. Both have led workshops in which they demonstrate black-belt mastery of martial arts (hers in karate, his in Taekwondo).
This generation of young adults with DS has shattered old ideas about what is possible for people who carry an extra 21st chromosome in their cells--the cause of DS--and what opportunities society owes them. They came of age in an era of early-intervention programs to spur physical and mental development--Desai began one at 7 weeks. Once in school, they were included in regular classrooms when possible and were offered tutoring and special classes when needed. Both bride and groom are high school graduates. Just as critical, this generation has benefited from medical care addressing the heart and gastrointestinal defects, eye problems, thyroid issues, obesity and other health woes that, for reasons that are poorly understood, often tag along with mental retardation as part of Down syndrome. The result: their average expected life span has doubled, from 25 in 1983 to 56 today. And as adults, they have had the Americans with Disabilities Act ensuring them a right to be accommodated in the workplace where possible.
While inclusion is the watchword for today's disabled Americans, social isolation remains a painful problem. "Once they leave high school, they can fall off the earth because of a lack of services," says Dennis McGuire, director of psychosocial services at the Adult Down Syndrome Center at Advocate Lutheran General Hospital in Park Ridge, Ill. "If they're stuck at home, they can end up feeling very much alone."
Carrie's mother Peggy became concerned about her daughter's social and romantic needs as Carrie entered adulthood. "When the loneliness began to loom around 21 and she saw her sister and brother having relationships and getting married, she longed for it," says Peggy. Group discussions at a nearby resource center for people with disabilities brought "some comfort," she says, but Carrie continued to talk about meeting her "Mr. Right." Says Peggy: "We never dreamed it would happen."
Sujeet's mother Sindoor, however, says she "had marriage in sight straightaway" once Sujeet expressed interest in Carrie. "We come from a different culture," she explains. As India-born Hindus, Sindoor and Sharad Desai, both dentists, "don't expect dating and breaking [up]." Nor did Sindoor wish to expose her vulnerable son to the emotional upheavals of serial entanglements.
With help from their families, who live about 90 minutes apart in upstate New York, the couple began dating. At a Valentine's Day party, "I had my eyes on her all the time," Sujeet recalls. Later that night, "I started to kiss her. She loved it!" The two began speaking by phone daily. Says Peggy: "They can talk about things"--like what they plan to eat for lunch that day--"that we'd get bored with." Finally, with plenty of plotting by both families, Sujeet popped the question onstage after he played a concert for people with disabilities, a moment that can be viewed on his website, Sujeet.com Says Carrie, who has exemplary verbal skills: "There are not many words to express how much I really love him. He's beyond words."
While love was blooming, the two families worked hard to create a system that might support an eventual marriage. There were few role models to follow. Many older adults with DS live in residential facilities that do not accommodate married couples. Another reason such marriages are rare--no one knows exactly how many there are--is that marital status can affect the amount of support that adults with disabilities receive from federal aid programs administered by the states. "People who might otherwise be interested in marriage don't want to risk losing their benefits," says Dr. William Schwab of Madison, Wis., who has worked as a consultant on sexuality issues for the National Down Syndrome Society.
Luckily for Carrie and Suj, New York State offers an innovative pilot program that allows individuals with developmental disabilities to design their own support plan, subject to state approval. The endlessly devoted Desais and Bergerons pressed for a plan that would allow the newlyweds to live together in their own apartment, located midway between the two family homes, and receive part-time aid with tasks like cooking. "They don't need baby sitting every hour," explains Sindoor. "What they need is money management and transportation" to part-time jobs, volunteer work, exercise classes and other activities. The "self-determination" program requires enormous initiative and hard work from the young couple, as well as those in their circle of support, but it allows them to take considerable responsibility for their own lives. "We want them to become as independent as they could be," says Sindoor, "so when we are not around, they can manage."
The most delicate questions arising from a marriage like this one concern sexuality and parenthood. Women and especially men with Down syndrome have low rates of fertility, but pregnancy is possible. Carrie reluctantly ruled it out, even before she met Suj, when her mother told her, correctly, that she would have a high risk of bearing a child with DS. "I just burst into tears," she recalls, "and then I said I would not have any children." A tubal ligation ensured the decision. But she says she and her new husband have other dreams to sustain them: "To continue with our speeches, to continue to make a difference in this world for people with special needs, to have some fun time too. And to take care of each other."
For more photos of the couple's Hindu wedding ceremony, go to time.com
Friday, July 14, 2006
Miscellaneous update
I feel like I'm not being a good blogger lately, so here's a short update on what's been happening at our house!
I had chemo yesterday. Counts were good enough for chemo which I was happy about. But they now actually went the other way and are too high... if it's not one thing, it's the other! Counts that are too high usually means you've got an infection of some type - but I don't. I've been ordered (yup - ordered by the nurse) to take my temperature twice a day just to ensure I'm OK.
Tom's still dealing with sciatica although it doesn't seem to be quite as bad. It seems that it'll take a few weeks for it to ease up and that only time will help.
Tom and I went out for a wonderful dinner on Wednesday night - without kids. I wanted to go out before chemo as this chemo really affects my taste buds and everything is quite tasteless for about 10 days. We enjoyed a really nice dinner while the kids watched the "talent" show (America's Got Talent??) at Oma and Opas's house. This is Kurtis's new favourite show. I've never watched it but I might have to check it out next time it's on.
The boys were both at camp this week. Ryan was in Kiddie Camp for the mornings only. Kathy was unable to go on Tuesday with Ryan, so I stayed in her place. It was quite interesting to spend 3 hours with Ryan in a structured setting and observe him. I've stayed for a little while to observe at school, but never for this length of time. I was amazed at how well he participated, how he listened, followed directions etc etc. There were some times when he did act out (ie run away, grab a toy from a child, not listen to the counsellor etc), but overall, I was quite impessed with my little man. He is so cute when he goes home... he finds EACH AND EVERY counsellor, and gives them a hug and kiss goodbye. He searches until he finds every one of them. Kathy and Ryan have been busy in the afternoon - going to the park, to the library, for a swim at the YMCA. Since Kathy doesn't drive, she's been taking the boys on the bus a lot which is great for them both. They are also walking a lot more than they ever do with me - which is also great for them, but especially for Ryan as it helps build up his endurance. BTW, have I told you already how great Kathy is? LOL
Kurtis was at Golf and Tennis Camp. Unfortunately, it poured buckets of rain on Monday and Wednesday so he didn't get a lot of golf or tennis in on those days. But he still had a great time. There are 3 other neighbourhood kids in the class too, so he's having fun with his friends learning the correct hold on a golf club, practicing his putting, and perfecting his tennis swing!
Kurtis also lost one of his top front teeth on Wednesday. My little science guy decided to try an experiment with the Tooth Fairy. He put his tooth in a small Tupperware container and placed it beside his bed instead of under his pillow. He wanted to see if the Tooth Fairy would know that he lost his tooth since it was in a container and not under the pillow. Well, apparently the Tooth Fairy needs the tooth to be under the pillow as she didn't make a visit that night. Kurtis woke me up very early in the morning by bouncing on my bed and declaring "Mom, I know the answer to my experiment. The Tooth Fairy DIDN'T COME!" So last night, he put the tooth directly under the pillow with 11 cents as well (why the 11 cents? This was another experiment... it was a tip for the Tooth Fairy and he wanted to see if she'd take it). So anyways, the Tooth Fairy visited last night and left $2.00 (and the 11 cents).
I had chemo yesterday. Counts were good enough for chemo which I was happy about. But they now actually went the other way and are too high... if it's not one thing, it's the other! Counts that are too high usually means you've got an infection of some type - but I don't. I've been ordered (yup - ordered by the nurse) to take my temperature twice a day just to ensure I'm OK.
Tom's still dealing with sciatica although it doesn't seem to be quite as bad. It seems that it'll take a few weeks for it to ease up and that only time will help.
Tom and I went out for a wonderful dinner on Wednesday night - without kids. I wanted to go out before chemo as this chemo really affects my taste buds and everything is quite tasteless for about 10 days. We enjoyed a really nice dinner while the kids watched the "talent" show (America's Got Talent??) at Oma and Opas's house. This is Kurtis's new favourite show. I've never watched it but I might have to check it out next time it's on.
The boys were both at camp this week. Ryan was in Kiddie Camp for the mornings only. Kathy was unable to go on Tuesday with Ryan, so I stayed in her place. It was quite interesting to spend 3 hours with Ryan in a structured setting and observe him. I've stayed for a little while to observe at school, but never for this length of time. I was amazed at how well he participated, how he listened, followed directions etc etc. There were some times when he did act out (ie run away, grab a toy from a child, not listen to the counsellor etc), but overall, I was quite impessed with my little man. He is so cute when he goes home... he finds EACH AND EVERY counsellor, and gives them a hug and kiss goodbye. He searches until he finds every one of them. Kathy and Ryan have been busy in the afternoon - going to the park, to the library, for a swim at the YMCA. Since Kathy doesn't drive, she's been taking the boys on the bus a lot which is great for them both. They are also walking a lot more than they ever do with me - which is also great for them, but especially for Ryan as it helps build up his endurance. BTW, have I told you already how great Kathy is? LOL
Kurtis was at Golf and Tennis Camp. Unfortunately, it poured buckets of rain on Monday and Wednesday so he didn't get a lot of golf or tennis in on those days. But he still had a great time. There are 3 other neighbourhood kids in the class too, so he's having fun with his friends learning the correct hold on a golf club, practicing his putting, and perfecting his tennis swing!
Kurtis also lost one of his top front teeth on Wednesday. My little science guy decided to try an experiment with the Tooth Fairy. He put his tooth in a small Tupperware container and placed it beside his bed instead of under his pillow. He wanted to see if the Tooth Fairy would know that he lost his tooth since it was in a container and not under the pillow. Well, apparently the Tooth Fairy needs the tooth to be under the pillow as she didn't make a visit that night. Kurtis woke me up very early in the morning by bouncing on my bed and declaring "Mom, I know the answer to my experiment. The Tooth Fairy DIDN'T COME!" So last night, he put the tooth directly under the pillow with 11 cents as well (why the 11 cents? This was another experiment... it was a tip for the Tooth Fairy and he wanted to see if she'd take it). So anyways, the Tooth Fairy visited last night and left $2.00 (and the 11 cents).
Saturday, July 08, 2006
Lots of prayer requests
I have some prayer requests for my family.
1. My Mom has been struggling with her health for a few years now due to a heart attack. She's had a few more issues with her heart recently. Her doctor has put her on some medication to help but it will take about 2 weeks before it will do anything. Please pray that this medication will help her. Pray for strength and comfort and that she will continue to feel God's unfailing love.
2. Tom has sciatica and is in a lot of pain. Pray that this will resolve quickly and that Tom will be back to health soon! It's tough on the kids as now they have two parents who aren't able to fully give themselves energy wise. We took them to Italian Festival last night (a very fun tradition for us) and we had to laugh at our family as we hobbled along... I was moving slowly because of the chemo I just had, Tom was moving slowly and awkwardly because of his back and Ryan was way overtired and cranky because of the busy day he had had.
3. My blood counts were borderline for this last round of chemo on Thursday. They were too low on Wednesday but I was re-tested on Thursday and they were good enough to get the chemo that day as scheduled. Pray that my counts continue to be acceptable so that I can receive the chemotherapy as scheduled. I go back in again next Thursday so I really need the counts to be up again. I'm going to be extremely good with my diet and supplements this week in the hopes that it will help.
1. My Mom has been struggling with her health for a few years now due to a heart attack. She's had a few more issues with her heart recently. Her doctor has put her on some medication to help but it will take about 2 weeks before it will do anything. Please pray that this medication will help her. Pray for strength and comfort and that she will continue to feel God's unfailing love.
2. Tom has sciatica and is in a lot of pain. Pray that this will resolve quickly and that Tom will be back to health soon! It's tough on the kids as now they have two parents who aren't able to fully give themselves energy wise. We took them to Italian Festival last night (a very fun tradition for us) and we had to laugh at our family as we hobbled along... I was moving slowly because of the chemo I just had, Tom was moving slowly and awkwardly because of his back and Ryan was way overtired and cranky because of the busy day he had had.
3. My blood counts were borderline for this last round of chemo on Thursday. They were too low on Wednesday but I was re-tested on Thursday and they were good enough to get the chemo that day as scheduled. Pray that my counts continue to be acceptable so that I can receive the chemotherapy as scheduled. I go back in again next Thursday so I really need the counts to be up again. I'm going to be extremely good with my diet and supplements this week in the hopes that it will help.
Sunday, July 02, 2006
Media and Down syndrome
A wonderful on-line friend of mine has a little boy with DS the same age as Ryan. Recently, Nash's picture was taken, with a few other children with DS, at a waterpark (apparently the cover shot was purchased by the local DS association at a fundraiser and the Executive Director worked with the magazine on the cover). She was thrilled - media coverage including children with T21 on a "regular" magazine just showing them engaged in "regular" activities. This isn't something you see everyday. Imagine her shock and dismay when she finds out the cover was used for a special maternity issue of Indy's Child that discusses the issue of prenatal testing for Down syndrome and other "defects". The article itself is fairly neutral (except for..to be discussed later) about testing. It lists exactly what each test does and how accurate it is. Except for...the last line of the article is the kicker: "I was fortunate. My daughter was born May 12 and shows no signs of Down syndrome. That's reassuring." Fortunate... unlike the parents of the beautiful children on the cover? What the heck is that about? There was nothing in the article about information for people who do find out prenatally that their child has DS. Nothing to help provide accuate information instead of the usual fear, doom and gloom that is generally provided to the uninformed people who receive a postive diagnosis.
I'm not going to get into the issue of prenatal testing on this post. I'll save that rant for another time. (But just as a teaser... did you know that about 80 - 90% of people who find out prenatally that their child has DS will abort? And most of them will have never actually spoken to a parent of a child with DS to find out what it's really like). What I want to vent about is the media.
I've had enough experience through Tom and his work to know that the media always seems to have an angle. I'm becoming very cynical about what I read in the paper as I know quotes and stories are manipulated to achieve certain goals. Just as an example, we have a local paper in our town that doesn't like the current Mayor. It's interesting to see how they very rarely now photograph her in Mayoral activities or give press to the positive things she is doing. In our own dealings with the press for our Buddy Walk, my friend Susan and I are always extremely clear with the reporter to avoid terms like "suffering from" or "afflicted with" DS. We emphasize people-first language (ie a child with DS) instead of terms like "down syndrome child" or "a downs". But even then, the poor old child attitude comes through, along with outdated stereotypes and facts that are sometimes just plain wrong. That's why I want to continue to advocate on behalf of people with DS. So that we DON'T need to continue to educate everytime we do an interview. So that old stereotypes and misdated information aren't taken as facts. So that people with DS are presented first and foremost as people... doing regular old people things. And that's why I continue to celebrate reporters, magazines and newspapers that DO report well. I hope to post some more good news stories as I come across them in the future.
Now back to this magazine...I'm baffled as to the thoughts of the editor in this case. Could it honestly just be a coincidence that this magazine chose to do this? It could be possible although I have a hard time believing that no one at the magazine recognized that they had a cover of children with DS on an issue discussing prenatal testing. Looking on the bright side... do they think that by putting a picture of beautiful kids who happen to have DS on the cover, they somehow negate what's written inside? Are they trying to show the positives? I'm not sure and not very hopeful that that's the case. I honestly cannot fathom what was going through this man's mind when he did this. In any event, I know Jan, her husband and the parents of the other children feel used, betrayed and lied to. I know that there have been letters to the editor already written and am looking forward to seeing the outcome of this. I hope that the editor will apologize and realize what he's done.
I'm not going to get into the issue of prenatal testing on this post. I'll save that rant for another time. (But just as a teaser... did you know that about 80 - 90% of people who find out prenatally that their child has DS will abort? And most of them will have never actually spoken to a parent of a child with DS to find out what it's really like). What I want to vent about is the media.
I've had enough experience through Tom and his work to know that the media always seems to have an angle. I'm becoming very cynical about what I read in the paper as I know quotes and stories are manipulated to achieve certain goals. Just as an example, we have a local paper in our town that doesn't like the current Mayor. It's interesting to see how they very rarely now photograph her in Mayoral activities or give press to the positive things she is doing. In our own dealings with the press for our Buddy Walk, my friend Susan and I are always extremely clear with the reporter to avoid terms like "suffering from" or "afflicted with" DS. We emphasize people-first language (ie a child with DS) instead of terms like "down syndrome child" or "a downs". But even then, the poor old child attitude comes through, along with outdated stereotypes and facts that are sometimes just plain wrong. That's why I want to continue to advocate on behalf of people with DS. So that we DON'T need to continue to educate everytime we do an interview. So that old stereotypes and misdated information aren't taken as facts. So that people with DS are presented first and foremost as people... doing regular old people things. And that's why I continue to celebrate reporters, magazines and newspapers that DO report well. I hope to post some more good news stories as I come across them in the future.
Now back to this magazine...I'm baffled as to the thoughts of the editor in this case. Could it honestly just be a coincidence that this magazine chose to do this? It could be possible although I have a hard time believing that no one at the magazine recognized that they had a cover of children with DS on an issue discussing prenatal testing. Looking on the bright side... do they think that by putting a picture of beautiful kids who happen to have DS on the cover, they somehow negate what's written inside? Are they trying to show the positives? I'm not sure and not very hopeful that that's the case. I honestly cannot fathom what was going through this man's mind when he did this. In any event, I know Jan, her husband and the parents of the other children feel used, betrayed and lied to. I know that there have been letters to the editor already written and am looking forward to seeing the outcome of this. I hope that the editor will apologize and realize what he's done.
Wednesday, June 28, 2006
Fun at Oma and Opa's house
Here are some pictures from today at Oma's house. The boys love to go swimming there and have a blast jumping around in the water. Look at Ryan jumping off the diving board... he always jumps out and leans forward so it's almost a belly flop. It always looks a bit painful to me, but it doesn't seem to bother him!
And check out the playhouse that Opa built for them! (Opa is in construction, so this was a hobby for him). Opa loves the architecture of Hundertwasser and designed this playhouse with that inspiration. I can't go in the very top room as it makes me dizzy, but the kids love it.
And check out the playhouse that Opa built for them! (Opa is in construction, so this was a hobby for him). Opa loves the architecture of Hundertwasser and designed this playhouse with that inspiration. I can't go in the very top room as it makes me dizzy, but the kids love it.
Friday, June 23, 2006
Thank you to everyone
It's 4:20 am and I'm wide awake. I had to take some steroids to deal with possible allergic reactions to the chemo drug I had yesterday and one of the side effects is insomnia (along with an incredibly hot and red face and some bloating in the face already). Thank goodness I only have to take these pills for 3 days. And so far, this chemo has been very easy although I've heard days 2-4 get a bit rougher. A good friend drove me home for the hospital and I was able to chat with her for quite a few hours before I got tired - we even went for a walk together! Thanks J! You're an amazing friend.
Anyways,,, I just wanted to say thank you to everyone who has posted to my blog and emailed me or phoned me. I don't think you know how much it means to me to have such incredible support. I really draw strength from knowing that prayers are being said and that you're thinking about me and my family.
Anyways,,, I just wanted to say thank you to everyone who has posted to my blog and emailed me or phoned me. I don't think you know how much it means to me to have such incredible support. I really draw strength from knowing that prayers are being said and that you're thinking about me and my family.
Sunday, June 18, 2006
Chemo Brain
First... this last round of chemo was the easiest I've ever had. And considering I've had 3 types of chemo in my life, for a total of 12.5 rounds, I think I have some good comparison! It was strange to be in the clinic instead of a hospital bed. Lazy boy chairs everywhere filled with people hooked up to i.v.'s; muzak playing in the background; volunteers anxious to get whatever you need. I was there and back home within 3 hours and the proceeded to sleep the next day and a half - apparently it's not just the anti-nausea drugs that make me tired. But the nausea was almost next to nothing and that made me very happy.
And now for the topic of the day...
Apparently there is actually a "label" for the decrease in mental alertness I've been experiencing - CHEMO BRAIN. I've been having trouble remembering names of people and things. It reminds of the time when I was pregnant and was telling someone to put something on the... you know.. the thing with four legs... you put plates on it and eat at it... yeah, that's it.. a TABLE. I'm having the same type of short circuits now. I happened to read an article in a cancer magazine at the Cancer Centre that talked about "chemo-brain". Here's what it says:
"Chemotherapy is known to be a neurotoxin and does impact on brain function. Many patients report psychological side effects of chemo that include mental and physical fatigue, stress, depression, mood disturbances, difficulty with focus and concentration, forgetfulness and confusion." It isn't clear whether all of this is a direct result of chemotherapy or an indirect symptom attributable to extreme fatigue, physical pain, stress.. etc etc. In any event, the good news is that it is temporary and things should return to normal gradually when chemo ends.
So I'm using this as my explanation for my TV addiction and my forgetfulness. By about 8:00 at night, I start to have a lot of trouble concentrating because I'm quite tired by then. When I've gone out for dinner with friends, or over to friends' houses, I'm ready to go home by 8:00 and have trouble carrying on a conversation. The only thing I seem to be able to do is plop my behind in the lazyboy chair and veg in front of the TV for a couple of hours.
I'm also incredibly forgetful - if it's not written down, it's as if it was never mentioned to me! For example, on the Victoria Day long weekend, my mother called on the Friday to ask if she and my Dad could come to visit sometime that weekend. I told them Monday would be perfect. On Sunday, a friend called and we made arrangements to have a picnic lunch with our kids at a park for Monday. Well, imagine my surprise when, as I'm starting to work on packing the lunch, my parents walk in my front door! Now this might have happened before chemo too, but at least I've got a good excuse!
Well, it's 9:30 pm and way past TV watching time! So I'm off. Goodnight all.
And now for the topic of the day...
Apparently there is actually a "label" for the decrease in mental alertness I've been experiencing - CHEMO BRAIN. I've been having trouble remembering names of people and things. It reminds of the time when I was pregnant and was telling someone to put something on the... you know.. the thing with four legs... you put plates on it and eat at it... yeah, that's it.. a TABLE. I'm having the same type of short circuits now. I happened to read an article in a cancer magazine at the Cancer Centre that talked about "chemo-brain". Here's what it says:
"Chemotherapy is known to be a neurotoxin and does impact on brain function. Many patients report psychological side effects of chemo that include mental and physical fatigue, stress, depression, mood disturbances, difficulty with focus and concentration, forgetfulness and confusion." It isn't clear whether all of this is a direct result of chemotherapy or an indirect symptom attributable to extreme fatigue, physical pain, stress.. etc etc. In any event, the good news is that it is temporary and things should return to normal gradually when chemo ends.
So I'm using this as my explanation for my TV addiction and my forgetfulness. By about 8:00 at night, I start to have a lot of trouble concentrating because I'm quite tired by then. When I've gone out for dinner with friends, or over to friends' houses, I'm ready to go home by 8:00 and have trouble carrying on a conversation. The only thing I seem to be able to do is plop my behind in the lazyboy chair and veg in front of the TV for a couple of hours.
I'm also incredibly forgetful - if it's not written down, it's as if it was never mentioned to me! For example, on the Victoria Day long weekend, my mother called on the Friday to ask if she and my Dad could come to visit sometime that weekend. I told them Monday would be perfect. On Sunday, a friend called and we made arrangements to have a picnic lunch with our kids at a park for Monday. Well, imagine my surprise when, as I'm starting to work on packing the lunch, my parents walk in my front door! Now this might have happened before chemo too, but at least I've got a good excuse!
Well, it's 9:30 pm and way past TV watching time! So I'm off. Goodnight all.
Wednesday, June 14, 2006
The Weaver
As I embark on another chemo regimen tomorrow, I am reminded of one of my favourite poems.
"The Weaver"
My Life is but a weaving between my Lord and me;
I cannot choose the colors He works steadily.
Oft times He weaveth sorrow
And I, in foolish pride,
Forget He sees the upper,
And I the under side.
Not til the loom is silent
And the shuttles cease to fly,
Shall God unroll the canvas
And explain the reason why.
The dark threads are as needful
In the Weaver's skillful hand
As the threads of gold and silverI
n the pattern He has planned.
He knows, He loves, He cares,
Nothing this truth can dim.
He gives His very best to those
Who leave the choice with Him.
"The Weaver"
My Life is but a weaving between my Lord and me;
I cannot choose the colors He works steadily.
Oft times He weaveth sorrow
And I, in foolish pride,
Forget He sees the upper,
And I the under side.
Not til the loom is silent
And the shuttles cease to fly,
Shall God unroll the canvas
And explain the reason why.
The dark threads are as needful
In the Weaver's skillful hand
As the threads of gold and silverI
n the pattern He has planned.
He knows, He loves, He cares,
Nothing this truth can dim.
He gives His very best to those
Who leave the choice with Him.
Monday, June 12, 2006
Plan of Attack
Tom and I met with my oncologist today to go over the new plan. Here's the scoop:
- two new chemotherapy drugs to try (new to me... these are established chemo drugs)
- the good news: I can be treated as an out-patient!!! YIPEE! No more hospital stays. Just a few hours in the Chemo Clinic and then back home.
- Drug A is to be administered on Day 1 and Day 8 (ie a week apart)
- Drug B is administered on Day 8
- then 2 weeks off. It's a 3-week cycle again.
- I go in on Thursday for the first treatment
- more good news (we pray): these drugs are much less emetic (nausea/vomiting producing). My oncologist says that most people don't even get sick at all and don't need anti-emetics. However, because of the strong reactions I have experienced and how sick I get, she's going to give me anti-nausea drugs anyways. But I should need a lot less.
- these drugs do have some different possible side effects but nothing major
- blood counts (and consequently, fatigue) will continue to be an issue, but that's nothing new.
Kurtis is thrilled that I won't have to stay in the hospital anymore - I can't argue with him there!
And, I have to share how thrilled with Kathy I am (our new babysitter). She truly was an answer to a prayer! She is so incredibly patient with my kids and handles them extremely well. She is mature beyond her years and the kids love her because she continually plays with them and organizes activities. But, she is also very helpful around the house. For example, we have a clothing armoire that we use to store games/crafts/etc. It was a bit of a mess and you had to search for everything. I showed it to her to let her know what was in there. I came home at night and she had organized everything in there. All neatly stacked and organized by activity and all the painting gear was put back in the painting container. You can actually find stuff now! Ryan is still getting used to all the activity. I must confess that since I've been sick (in mid-December), the kids have watched way, way, way too much TV. And Ryan more than Kurtis, just because he's only in school 2 or 3 days a week. So Ryan is used to watching his Sesame Street pretty much when he wants. He's having some trouble adjusting to less TV and more activity - let's just say he's ready to sleep when bedtime comes! But, it is so much better for him and it's already better than the first few times she was here.
- two new chemotherapy drugs to try (new to me... these are established chemo drugs)
- the good news: I can be treated as an out-patient!!! YIPEE! No more hospital stays. Just a few hours in the Chemo Clinic and then back home.
- Drug A is to be administered on Day 1 and Day 8 (ie a week apart)
- Drug B is administered on Day 8
- then 2 weeks off. It's a 3-week cycle again.
- I go in on Thursday for the first treatment
- more good news (we pray): these drugs are much less emetic (nausea/vomiting producing). My oncologist says that most people don't even get sick at all and don't need anti-emetics. However, because of the strong reactions I have experienced and how sick I get, she's going to give me anti-nausea drugs anyways. But I should need a lot less.
- these drugs do have some different possible side effects but nothing major
- blood counts (and consequently, fatigue) will continue to be an issue, but that's nothing new.
Kurtis is thrilled that I won't have to stay in the hospital anymore - I can't argue with him there!
And, I have to share how thrilled with Kathy I am (our new babysitter). She truly was an answer to a prayer! She is so incredibly patient with my kids and handles them extremely well. She is mature beyond her years and the kids love her because she continually plays with them and organizes activities. But, she is also very helpful around the house. For example, we have a clothing armoire that we use to store games/crafts/etc. It was a bit of a mess and you had to search for everything. I showed it to her to let her know what was in there. I came home at night and she had organized everything in there. All neatly stacked and organized by activity and all the painting gear was put back in the painting container. You can actually find stuff now! Ryan is still getting used to all the activity. I must confess that since I've been sick (in mid-December), the kids have watched way, way, way too much TV. And Ryan more than Kurtis, just because he's only in school 2 or 3 days a week. So Ryan is used to watching his Sesame Street pretty much when he wants. He's having some trouble adjusting to less TV and more activity - let's just say he's ready to sleep when bedtime comes! But, it is so much better for him and it's already better than the first few times she was here.
Tuesday, June 06, 2006
Discouraging news
We got the results of my CT scan today and they weren't good. The chemotherapy has had minimal to no effect on the tumors. 4 rounds of chemo and they did nothing. We had talked about doing high dose chemo but the doctor at Princess Margaret feels high dose won't do anything either since the regular dose was so ineffective.
So we're done with Plan A and we move on to Plan B. Plan B is a new chemo protocol - 2 totally new drugs. I don't know anything about these drugs - if they're easier/harder than the first, the length of time they take to infuse etc etc. We have a meeting with my oncologist on Monday and will find out more at that time. In the meantime, we going to see if we can do a third opinion with an expert in the U.S. to ensure this Plan B is the right way to go.
Please remember me in your prayers as we deal with this discouraging news.
So we're done with Plan A and we move on to Plan B. Plan B is a new chemo protocol - 2 totally new drugs. I don't know anything about these drugs - if they're easier/harder than the first, the length of time they take to infuse etc etc. We have a meeting with my oncologist on Monday and will find out more at that time. In the meantime, we going to see if we can do a third opinion with an expert in the U.S. to ensure this Plan B is the right way to go.
Please remember me in your prayers as we deal with this discouraging news.
Sunday, June 04, 2006
Keeping up wih the Kids
We've had a busy busy few days.
Friday: The Ontario AgriCentre - that Tom built - had its grand opening. They had a few dignitaries speak, then we visited the many food stations and had lunch there. We then drove to Toys R Us to shop for presents.
Saturday: Ryan had a birthday party and Kurtis had a birthday party. Kurtis also had his first piano recital in the evening. I was just bursting at the seams with pride for him - he's been taking lessons since November but he did a piece with two hands and a flourish of an ending that he "made up". He performed it absolutely flawlessly. I'm actually just thrilled that he enjoys playing and taking lessons - it's a wonderful activity to enjoy.
Sunday: Ran had another birthday party and then we had our annual Down syndrome picnic. I love our DS picnics - we have it at an amazing house. There's games for the kids, a soccer net, a beach with a small lake, a paddle boat and a trampoline in the middle of the lake. What a great time we had!
I came across this article in my "down syndrome" circles. I loved it so much because that's exactly how Tom and I, and I hope Kurtis, see Ryan. I feel exactly the way the writer does:
"So please don’t feel sorry for us. Don’t feel sorry for my brother, either. There isn’t any reason to; he isn’t sick. Don’t be scared of experiences similar to mine. I can tell you that my life would not be this happy if it weren’t for Kevin. More important, have an open mind. Next time you meet a person with a disability, remember that he or she has so much to share with you. Take the time to listen."
http://www.msnbc.msn.com/id/13088876/site/newsweek/
Friday: The Ontario AgriCentre - that Tom built - had its grand opening. They had a few dignitaries speak, then we visited the many food stations and had lunch there. We then drove to Toys R Us to shop for presents.
Saturday: Ryan had a birthday party and Kurtis had a birthday party. Kurtis also had his first piano recital in the evening. I was just bursting at the seams with pride for him - he's been taking lessons since November but he did a piece with two hands and a flourish of an ending that he "made up". He performed it absolutely flawlessly. I'm actually just thrilled that he enjoys playing and taking lessons - it's a wonderful activity to enjoy.
Sunday: Ran had another birthday party and then we had our annual Down syndrome picnic. I love our DS picnics - we have it at an amazing house. There's games for the kids, a soccer net, a beach with a small lake, a paddle boat and a trampoline in the middle of the lake. What a great time we had!
I came across this article in my "down syndrome" circles. I loved it so much because that's exactly how Tom and I, and I hope Kurtis, see Ryan. I feel exactly the way the writer does:
"So please don’t feel sorry for us. Don’t feel sorry for my brother, either. There isn’t any reason to; he isn’t sick. Don’t be scared of experiences similar to mine. I can tell you that my life would not be this happy if it weren’t for Kevin. More important, have an open mind. Next time you meet a person with a disability, remember that he or she has so much to share with you. Take the time to listen."
http://www.msnbc.msn.com/id/13088876/site/newsweek/
Sunday, May 28, 2006
#4 is Done
I'm so glad this one is done... this time was tough.
First, the easy stuff....
I had a port-a-cath put in on Friday. This is a central access line that will allow them to give me chemo through this spot without putting in new IVs all the time. My veins are pretty much shot. They were in rough shape from my previous chemotherapy 22 years ago and haven't really recovered. This past chemo I only needed two IVs - and I had a good nurse so no extra pokes. But the time before I needed 3 IVS and two tries. The IVs are good for a bit, but then deterioriate, and because the one drug I take is quite dangerous to tissue, they need an entirely clear line. I'm looking forward to not being so much of a pin cushion.
I got back from chemo on Friday afternoon. And as I said, it was a rough one this time - physically, mentally and emotionally. I'm not sure why that is but the nausea was tough this time and then that leads to a tougher time mentally as well. I'm wondering if a big part of it was my frame of mind going in. I had a few worries on my mind and a few things were different:
- my non-verbal 5 year old and his new babysitter alone together for an entire day. I knew she'd take good care of him and he does communicate quite well without words, but still... she doesn't know his routines, his likes/dislikes etc etc etc etc (But, of course, they ended up getting along wonderfully and both boys are apparently in love with Kathy)
- the yet unknown results of my CT scan
- ending up going to chemo by myself (now before all my local friends remind me that I should have called them, it was just easier at the time and in the circumstances that I drive myself). I missed having Tom's presence by my side.
Looking back, it really is a short time that I'm feeling so terrible... just over two days... not a huge stretch of time. And even now, a few days later, it really doesn't seem that bad (somehow this seems reminiscent of all those stories about giving birth and how you don't remember the pain afterwards!) But when you're in the middle of it, time seems to go slower. I couldn't eat or drink. I couldn't even bear to have the food tray brought into my room this time as every smell was horrible. Sitting up was too much work. I just couldn't imagine how I am going to get through another one. I couldn't even manage to pray. All I do is say "Lord, carry me right now because I can't do it" and then just "Carry me Lord". I have a little 3 word "prayer" or mantra I say in my head and it helps me to relax... and then I sleep. Wonderful, restorative sleep. Unfortunately, for me, I couldn't sleep 48 hours in a stretch and had to wake up at some point.
I'm not telling all of this to have people feel sorry for me. That's not what I want. I hesitated about posting this as I don't want people to feel sorry for me... I've written, deleted, rewritten, deleted again.... but ultimately what I'm writing is my experience and I wanted to share it. And I think there are a few reasons for this:
1. That you'll keep me in your prayers that I can rebound quickly and that the next round is easier. Pray that, to paraphrase from the poem below, the Lord will help me to persevere through all these days, knowing that this chemo is making me better and it is working towards the end that I'll be free from this dreadful "C""
2. To let you know that I do have my not-so-good days. I've been told many times how "strong" I am. And I think I am. I'm optimistic, hopeful and am enjoying life even in the midst of this crap (yeah, I know... I could have picked a better word, but you know what - it IS crap!). And those not-so-good days are when I desparately need your prayers for strength and peace.
3. To share my faith... How I'm learning that God is my strength and support. When I can do nothing but pray "help", He is there for me, enfolding me in love. "Be still and know that I am God".
Here's another poem by Angelina Fast-Vlaar that is so appropriate for me at this time:
Black Thursday
Days of feeling well
enjoying life and all its joys
are abruptly ended by the coming of Thursday
A few pills, a needle pulsing
poison through my veins
are enough to collapse the wellness
and I am catapulted into a world
where the air smells foul,
where the water reeks,
where food and drink take on
a strange metallic taste,
where my stomach revolts,
my mouth breaks out,
and my muscles turn to lead.
I curl up by the fire on the soft sheepskin rug.
How sick can I get? Will I bounce back before next Thursday
already looming black on the horizon?
The glowing fire warms my shivering frame and I remember reading,
"May the Lord direct your hearts into God's love and Christ's perseverance."
As my body relaxes in the fire's warmth, I let my heart relax in the warmth
of God's love and I muse how Christ's long dark Friday turned to "Good" because
He persevered to work a great salvation. But how can I persevere through a
whole year of Thursdays coiled before me like an ever-circling, menacing maze?
And so I cry,
O Lord, direct my heart that I may learn to persevere through all the "good"
Thursdays, and may they work towards the end that I'll be free from this
dreadful "C". DV
First, the easy stuff....
I had a port-a-cath put in on Friday. This is a central access line that will allow them to give me chemo through this spot without putting in new IVs all the time. My veins are pretty much shot. They were in rough shape from my previous chemotherapy 22 years ago and haven't really recovered. This past chemo I only needed two IVs - and I had a good nurse so no extra pokes. But the time before I needed 3 IVS and two tries. The IVs are good for a bit, but then deterioriate, and because the one drug I take is quite dangerous to tissue, they need an entirely clear line. I'm looking forward to not being so much of a pin cushion.
I got back from chemo on Friday afternoon. And as I said, it was a rough one this time - physically, mentally and emotionally. I'm not sure why that is but the nausea was tough this time and then that leads to a tougher time mentally as well. I'm wondering if a big part of it was my frame of mind going in. I had a few worries on my mind and a few things were different:
- my non-verbal 5 year old and his new babysitter alone together for an entire day. I knew she'd take good care of him and he does communicate quite well without words, but still... she doesn't know his routines, his likes/dislikes etc etc etc etc (But, of course, they ended up getting along wonderfully and both boys are apparently in love with Kathy)
- the yet unknown results of my CT scan
- ending up going to chemo by myself (now before all my local friends remind me that I should have called them, it was just easier at the time and in the circumstances that I drive myself). I missed having Tom's presence by my side.
Looking back, it really is a short time that I'm feeling so terrible... just over two days... not a huge stretch of time. And even now, a few days later, it really doesn't seem that bad (somehow this seems reminiscent of all those stories about giving birth and how you don't remember the pain afterwards!) But when you're in the middle of it, time seems to go slower. I couldn't eat or drink. I couldn't even bear to have the food tray brought into my room this time as every smell was horrible. Sitting up was too much work. I just couldn't imagine how I am going to get through another one. I couldn't even manage to pray. All I do is say "Lord, carry me right now because I can't do it" and then just "Carry me Lord". I have a little 3 word "prayer" or mantra I say in my head and it helps me to relax... and then I sleep. Wonderful, restorative sleep. Unfortunately, for me, I couldn't sleep 48 hours in a stretch and had to wake up at some point.
I'm not telling all of this to have people feel sorry for me. That's not what I want. I hesitated about posting this as I don't want people to feel sorry for me... I've written, deleted, rewritten, deleted again.... but ultimately what I'm writing is my experience and I wanted to share it. And I think there are a few reasons for this:
1. That you'll keep me in your prayers that I can rebound quickly and that the next round is easier. Pray that, to paraphrase from the poem below, the Lord will help me to persevere through all these days, knowing that this chemo is making me better and it is working towards the end that I'll be free from this dreadful "C""
2. To let you know that I do have my not-so-good days. I've been told many times how "strong" I am. And I think I am. I'm optimistic, hopeful and am enjoying life even in the midst of this crap (yeah, I know... I could have picked a better word, but you know what - it IS crap!). And those not-so-good days are when I desparately need your prayers for strength and peace.
3. To share my faith... How I'm learning that God is my strength and support. When I can do nothing but pray "help", He is there for me, enfolding me in love. "Be still and know that I am God".
Here's another poem by Angelina Fast-Vlaar that is so appropriate for me at this time:
Black Thursday
Days of feeling well
enjoying life and all its joys
are abruptly ended by the coming of Thursday
A few pills, a needle pulsing
poison through my veins
are enough to collapse the wellness
and I am catapulted into a world
where the air smells foul,
where the water reeks,
where food and drink take on
a strange metallic taste,
where my stomach revolts,
my mouth breaks out,
and my muscles turn to lead.
I curl up by the fire on the soft sheepskin rug.
How sick can I get? Will I bounce back before next Thursday
already looming black on the horizon?
The glowing fire warms my shivering frame and I remember reading,
"May the Lord direct your hearts into God's love and Christ's perseverance."
As my body relaxes in the fire's warmth, I let my heart relax in the warmth
of God's love and I muse how Christ's long dark Friday turned to "Good" because
He persevered to work a great salvation. But how can I persevere through a
whole year of Thursdays coiled before me like an ever-circling, menacing maze?
And so I cry,
O Lord, direct my heart that I may learn to persevere through all the "good"
Thursdays, and may they work towards the end that I'll be free from this
dreadful "C". DV
Saturday, May 20, 2006
Pilates Anyone?
One morning I set Ryan up in front of Sesame Street at 6:00 am (yes, he wakes up far too early for me) while I went to take a shower. I came back to Ryan doing his Winsor Pilates exercises. It was too funny for words. What got me is that he got out the exercise mat and was diligently following the instructions. He could do the 100 better than me! I quick took a couple of pictures before he saw me. A week or so later, he did it again... so this time I got the video out! Click on the link below to see the videos. The second video is actually Kurtis getting in the action too. It also shows Ryan's slowly developing speech! For those of you who don't know Ryan, his speech has been his biggest challenge. He is diagnosed with apraxia - this is unrelated to Down syndrome, although many children with DS do have apraxia. Apraxia basically means that his brain knows what it wants to say, but he has extreme difficulty in making his mouth form the correct shape to say the words. It also means he can say a sound in one context but not another. For example, he can say "no" perfectly clearly, but cannot make the /n/ sound on command. Anyways, we are slowly seeing some progress and it is so exciting. Here is Ryan saying "I love you"... and the neat thing is that the pronounciation has improved a great deal since this video was taken.
http://dropshots.com/annettel
http://dropshots.com/annettel
Wednesday, May 17, 2006
Yeah - we have a babysitter!
I have been worried about what we're going "to do" with the boys over the summer. I'm not able to take care of them every day... day in-day out... Right now, a few hours at a time is about all I'm physically able to handle. Tom's Mom is around too, but it's really not fair to her to ask her to take care of them more than once a week either. I emailed a few friends a couple of months ago asking if they knew of any teenagers who were available for babysitting/mother's helper work. I prayed that the right person would be found. Well, our prayer was answered... we have Kathy!
She's the daugher of a friend of a friend...and the only person that was brought to my attention. I must admit, though, that once I heard about her, I stopped actively looking as I thought she would be perfect for the job. And she seems to be! She's worked with a lot of children, including a child with Down syndrome and a child with autism. She's also working on her ECE (early childhood education) diploma so she has lots of ideas of things to do with the kids. She's done volunteer work at the Camp that Kurtis and Ryan are going to for one week (Sunrise Therapeutic Riding Centre - it's geared to children with special needs, but their camps accept children of all abilities and needs) so she'll be able to easily be his one-on-one for that Camp! Best of all, with her experience, she'll be able to help me continue to work with Ryan towards his goals so that he'll be well prepared for kindergarten in the fall.
We met with her tonight and she's hired! I think it'll be a good fit.
She's the daugher of a friend of a friend...and the only person that was brought to my attention. I must admit, though, that once I heard about her, I stopped actively looking as I thought she would be perfect for the job. And she seems to be! She's worked with a lot of children, including a child with Down syndrome and a child with autism. She's also working on her ECE (early childhood education) diploma so she has lots of ideas of things to do with the kids. She's done volunteer work at the Camp that Kurtis and Ryan are going to for one week (Sunrise Therapeutic Riding Centre - it's geared to children with special needs, but their camps accept children of all abilities and needs) so she'll be able to easily be his one-on-one for that Camp! Best of all, with her experience, she'll be able to help me continue to work with Ryan towards his goals so that he'll be well prepared for kindergarten in the fall.
We met with her tonight and she's hired! I think it'll be a good fit.
Tuesday, May 16, 2006
Happy (belated) Mother's Day
I hope all you mothers reading this had a wonderful day...you deserve it! And a special wish to my Mom.... we didn't make it down to visit this weekend, but you know I love you and I hope you had a good day with your other #1 daughter!
First, I got treated to some beautiful gifts made with love by my boys. Then I got treated to breakfast made by all my boys. Tom gave me a beautiful lamp (Lampe Berger) that is supposed to clean the air of bacteria as well as scenting the room. (It's a case of "great minds think alike"... I had heard about these lamps from my massage therapist and was planning on investigating further, but surprise, surprise, Tom heard about them from someone too and bought me one!). Anways, back to our day....We went to Wings of Paradise in Cambridge. We've been there many times before, but the kids (particularly Kurtis) still love to go. He finds the butterflies and the bugs they have on display fascinating.
Thank you Tom, Kurtis and Ryan for making my day!
I don't remember where I saw the following article, but I kept it because it really reminded me about what's important in being a parent, and for some reason, found it again today. Enjoy.
On Being Mom
by Anna Quindlen
If not for the photographs, I might have a hard time believing they ever existed. The pensive infant with the swipe of dark bangs and the black button eyes of a Raggedy Andy doll. The placid baby with the yellow ringlets and the high piping voice. The sturdy toddler with the lower lip that curled into an apostrophe above her chin. ALL MY BABIES are gone now. I say this not in sorrow but in disbelief. I take great satisfaction in what I have today: Three almost-adults, two taller than I am, one closing in fast; three people who read the same books I do and have learned not to be afraid of disagreeing with me in their opinion of them; who sometimes tell vulgar jokes that make me laugh until I choke and cry; who need razor blades and shower gel and privacy; who want to keep their doors closed more than I like; who, miraculously, go to the bathroom, zip up their jackets and move food from plate to mouth all by themselves. Like the trick soap I bought for the bathroom with a rubber ducky at its center, the baby is buried deep within each, barely discernible except through the unreliable haze of the past. Everything in all the books I once pored over is finished for me now. Penelope Leach, T. Berry Brazelton, Dr. Spock. The ones on sibling rivalry and sleeping through the night and early-childhood education, all grown obsolete. Along with Goodnight Moon and Where the Wild Things Are, they are battered, spotted, well used. But I suspect that if you flipped the pages, dust would rise like memories. What those books taught me, finally, and what the women on the playground taught me, and the well-meaning relations --what they taught me was that they couldn't really teach me very much at all. Raising children is presented at first as a true-false test, then becomes multiple choice, until finally, far along, you realize that it is an endless essay. No one knows anything. One child responds well to positive reinforcement, another can be managed only with a stern voice and a timeout. One boy is toilet trained at 3, his brother at 2. When my first child was born, parents were told to put baby to bed on his belly so that he would not choke on his own spit-up. By the time my last arrived, babies were put down on their backs because of research on sudden infant death syndrome. To a new parent this ever-shifting certainty is terrifying, and then soothing. Eventually you must learn to trust yourself. Eventually the research will follow. I remember 15 years ago poring over one of Dr. Brazelton's wonderful books on child development in which he describes three different sorts of infants: average, quiet, and active. I was looking for a sub-quiet codicil for an 18-month-old who did not walk. Was there something wrong with his fat little legs? Was there something wrong with his tiny little mind? Was he developmentally delayed, physically challenged? Was I insane? Last year he went to China. Next year he goes to college. He can talk just fine. He can walk, too. Every part of raising children is humbling, too. Believe me, mistakes were made. They have all been enshrined in the Remember-When-Mom-Did Hall of Fame. The outbursts, the temper tantrums, the bad language, mine, not theirs. The times the baby fell off the bed. The times I arrived late for preschool pickup. The nightmare sleepover. The horrible summer camp. The day when the youngest came barreling out of the classroom with a 98 on her geography test, and I responded, "What did you get wrong?" (She insisted I include that.) The time I ordered food at the McDonald's drive-through speaker and then drove away without picking it up from the window. (They all insisted I include that.) I did not allow them to watch the Simpsons for the first two seasons. What was I thinking? But the biggest mistake I made is the one that most of us make while doing this. I did not live in the moment enough. This is particularly clear now that the moment is gone, captured only in photographs. There is one picture of the three of them sitting in the grass on a quilt in the shadow of the swing set on a summer day, ages 6, 4 and 1. And I wish I could remember what we ate, and what we talked about, and how they sounded, and how they looked when they slept that night. I wish I had not been in such a hurry to get on to the next thing: dinner, bath, book, bed. I wish I had treasured the doing a little more and the getting it done a little less.Even today I'm not sure what worked and what didn't, what was me and what was simply life. When they were very small, I suppose I thought someday they would become who they were because of what I'd done. Now I suspect they simply grew into their true selves because they demanded in a thousand ways that I back off and let them be. The books said to be relaxed and I was often tense, matter-of-fact and I was sometimes over the top. And look how it all turned out. I wound up with the three people I like best in the world, who have done more than anyone to excavate my essential humanity. That's what the books never told me. I was bound and determined to learn from the experts. It just took me a while to figure out who the experts were.
Wednesday, May 10, 2006
Our Great House
"Mom, we have a great house for nature" declared Kurtis yesterday. Considering we live in "town", we almost have our own zoo!
First, we went to check out "our" bunny. He makes his home in our front garden, nestled in behind the bushes. He's quite a tame bunny - although he won't let us get right up to touch him, he does let us get quite close and will sometimes just stay on the front lawn while the kids play nearby. He has a little bunny friend who sometimes comes out and plays in the early evening too. It's quite amazing to see this two rabbits horsing around on the front lawn and then grazing on our weeds. We feed Mr. Bunny carrots, spinach and lettuce leaves to make sure he wants to stay!
Then we observed the birds on our bird feeder. The boys and I set up our birdfeeder together last fall. This spring I picked seeds designed to attract finches, doves and cardinals - and boy, was I successful! Bright yellow finches and beautiful red cardinals... and the occassional dove eating on the ground.
Next, we went to our backyard to check out Mrs. Dove. She has made a nest on the top of our awning (which is retracted right now). Kurtis looks everyday to see if there are babies yet. So far, Mrs. Dove is just demonstrating her devotion to her babies by not moving. Kurtis has placed bird seed and sticks nearby for their convenience but unfortunately Mr. or Mrs. Dove hasn't used either (perhaps I'll move some away today ;) ).
Finally, after playing on our tire swing in the front yard, Kurtis asked for a jar so he could collect the ants climbing all over the tree.. LOOK how many there are! OK, ants maybe don't qualify but to a 7 year old boy, they're fascinating!
Children are such a gift - they open your eyes to the everyday miracles that occur in your own yard!
First, we went to check out "our" bunny. He makes his home in our front garden, nestled in behind the bushes. He's quite a tame bunny - although he won't let us get right up to touch him, he does let us get quite close and will sometimes just stay on the front lawn while the kids play nearby. He has a little bunny friend who sometimes comes out and plays in the early evening too. It's quite amazing to see this two rabbits horsing around on the front lawn and then grazing on our weeds. We feed Mr. Bunny carrots, spinach and lettuce leaves to make sure he wants to stay!
Then we observed the birds on our bird feeder. The boys and I set up our birdfeeder together last fall. This spring I picked seeds designed to attract finches, doves and cardinals - and boy, was I successful! Bright yellow finches and beautiful red cardinals... and the occassional dove eating on the ground.
Next, we went to our backyard to check out Mrs. Dove. She has made a nest on the top of our awning (which is retracted right now). Kurtis looks everyday to see if there are babies yet. So far, Mrs. Dove is just demonstrating her devotion to her babies by not moving. Kurtis has placed bird seed and sticks nearby for their convenience but unfortunately Mr. or Mrs. Dove hasn't used either (perhaps I'll move some away today ;) ).
Finally, after playing on our tire swing in the front yard, Kurtis asked for a jar so he could collect the ants climbing all over the tree.. LOOK how many there are! OK, ants maybe don't qualify but to a 7 year old boy, they're fascinating!
Children are such a gift - they open your eyes to the everyday miracles that occur in your own yard!
Tuesday, May 09, 2006
#3 Down and ramblings of the day
I finally made it in to the hospital last Wednesday night. It actually went relatively fast - I guess that's because I slept most of the time! The anti-nausea drugs knock me out. They don't just make me drowsy or a little bit tired, they put me to sleep. So I just went with the flow and slept. The first two times it really bothered me as I felt I was wasting so much time. I had books and magazines to read, movies to watch, journals to write in... and I didn't do anything. For someone who is used to being busy, 2 1/2 days of nothingness is just not acceptable! This time I just realized nothing much is going to happen during those 2-3 days of chemo other than sleep and have learned to accept it. I slept, prayed and watched a bit of TV. I've also discovered the secrets of the kitchen on the oncology floor so I'm also giving up on the hospital food and instead made myself toast and drank apple juice (it's what I live on for about 3 days after chemo). Not that I've ever actually eaten a meal delivered by the hospital staff - it usually just sits in my room and gets removed untouched as food wasn't ever desirable. But this time, probably due to the increase in anti-nausea drugs, the thought of toast was OK.
I'm getting to know the nurses on the floor relatively well now... they are a wonderful bunch and are quite compassionate, caring and eager to help. If only they still gave backrubs!
Today was a "good energy" day. I went for a good walk in the morning. The colours of all the flowers and blossoms were so amazingly beautiful and the birds were music to my ears. I forced myself to keep to a good pace and forced myself to walk just a bit more than the last time I walked. Then off to the mall to run some errands and buy the kids some summer clothes.... indulged in a moccaccino... and enjoyed a quick lunch with Tom. Then another indulgence - my every 3 weeks massage. Ryan rode his bike in the afternoon and Kurtis went on the go-cart. Not a bad day, eh? We love spring and summer!
I'm getting to know the nurses on the floor relatively well now... they are a wonderful bunch and are quite compassionate, caring and eager to help. If only they still gave backrubs!
Today was a "good energy" day. I went for a good walk in the morning. The colours of all the flowers and blossoms were so amazingly beautiful and the birds were music to my ears. I forced myself to keep to a good pace and forced myself to walk just a bit more than the last time I walked. Then off to the mall to run some errands and buy the kids some summer clothes.... indulged in a moccaccino... and enjoyed a quick lunch with Tom. Then another indulgence - my every 3 weeks massage. Ryan rode his bike in the afternoon and Kurtis went on the go-cart. Not a bad day, eh? We love spring and summer!
Wednesday, May 03, 2006
waiting....waiting...waiting...
It's that time again. 3 weeks have just flown by and it's chemo time. Tom and I saw my oncologist yesterday and blood counts are up to par, so we were good to go. But, once again, they have no bed for me. So here I sit, at 11:45 am the next day waiting for the phone to ring to let me know if I can come down. We're going to have to talk to my doctor about a different method of admitting me because this waiting is incredibly frustrating - for me, Tom and the kids. But I have a feeling this is how the "system" here works.
Please keep me in your prayers this time that the nausea and fatigue can be minimized again. Also, I ask that you keep Kurtis in your prayers as well. He's having a hard time with me going to the hospital. On Monday night, he prayed "that there won't be a bed available" as he didn't want me to go to the hospital (and yes, he believes very strongly in the power of prayer now). His biggest challenge is bedtime as we have a routine that seems to be very important to him. So we're going to try "tucking in" over the phone and see how that goes.
Please keep me in your prayers this time that the nausea and fatigue can be minimized again. Also, I ask that you keep Kurtis in your prayers as well. He's having a hard time with me going to the hospital. On Monday night, he prayed "that there won't be a bed available" as he didn't want me to go to the hospital (and yes, he believes very strongly in the power of prayer now). His biggest challenge is bedtime as we have a routine that seems to be very important to him. So we're going to try "tucking in" over the phone and see how that goes.
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