Thursday, March 25, 2010 was Carl's birthday. For Carl's birthday he got a premier preformance of "The Sneeches" from Miranda's School, Wilson Elementary School. Miranda was awesome as "Sneech #3", and all 180 children that participated in some way in the play did an amazing job.
A friend Debbie brought over Carl's dinner and a Birthday cake. I kind of felt guilty that she brought over dinner, (AND a very cool cake), but it was a wonderful family meal and a great party. It made Carl's birthday go a bit easier for the entire family (you know, it was a school night, everyone had homework, etc.) The dinner was especially fitting for Carl. We have an ongoing debate in the family of which is preferred - rice or noodles. (All but one child loves both, but there is that tiny preference thing... You know, which to make tonight when it is the 3rd night of the week when you are having one or the other...; Which would you rather have chili over - rice or noodles...) I am ok with noodles more frequently then rice, as are most of my children, and Carl is entirely in the rice camp. (Sometimes I suspect he might actually not care for noodles - Gasp!) Dinner that night was a glorious meat and sauce dish over a bed of RICE! (Everyone liked it and had seconds.)
Again - it must be noted, we like both rice and noodles. In fact, I got Carl a rice maker for a gift one year. At first he was skeptical - and didn't want to use it. But I had watched a gourmet show, and as the TV chef said - rice makers work great. 500 million Asians can't be wrong.
Carl has been going to work daily, for typically eight hours a day, every work day since his last chemo was over, starting on March 9, 2010. He likes going to work, and his desk job working at a computer at Arandall Corporation is mentally challenging and not physically taxing. I am now comfortable with the idea of Carl working everyday. Staying at home and facing the always present to do list around an older house can sometimes make you anxious, so go and enjoy work Carl!
Tuesday, March 30, 2010, (today, as I write this) we are going to meet with Carl's Doctor (The Radiation Dude) to discuss the next steps. (Probably radiation, how long, when...) Guess how I slept last night? Horribly. I tossed and turned, saw the alarm clocks red numbers glaring at several points throughout the night. I would say I don't remember sleeping, except I had a wild dream of a crazy storm along the lakefront and all these little boats in distress as everyone basically hunkered down, got soaked and took a beating. And I was taking children to some scheduled sports activity in the rain, and the location kept having to change because of the rain. So I kept having to drive past the boats, and running into buildings in the pouring rain. But no one was dying, or even getting hurt, so I guess that is a good sign? The dream seems easier then today and the month ahead, now that I am awake. After all, the eventually the (dream) storm will be over with. (???)
The storm and rain dream is not made up. It's my actual dream from last night. I have fairly vivid dreams multiple times a week, in color.
I let you know what the Doc's have in mind... Bye for now!
Tuesday, March 30, 2010
Monday, March 22, 2010
Sort of waiting, Post Chemo No. 4
Carl finished his forth round of Chemo on March 5, 2009.Monday, March 8, 2010 Carl wanted to go to work, but some of his co-workers were recovering from a flu like 'thing', so he decided to stay home and we went to an eye doctor appointment instead. Now Carl needs glasses, too. Carl's talented co-worker drew one possible picture of Carl and his new look.
Tuesday, Wednesday, Thursday and Friday March 12, 2010 Carl went to work and drove as well.
On Tuesday, March 9, 2010, we went to Miranda's 5th grade vocal concert. This was our final singing concert at Wilson School for our children. Miranda is wearing the green dress. (Thank you Miranda!)
I estimate we attended about 20 such concerts at Wilson School. At six of these concerts we had a child in each grade that sang. (The concerts at Wilson school are concerts for two grades at a time) All of the concerts involved the talented and inspiring Mrs. K, the music teacher. She may be the only teacher (other then the art teacher?) that had, (and survived!) all of my children.
Grisa's can arrive early (with intense motivation), and for concerts I would try to arrive early enough to get a front row seat, that usually worked. Our neighbor Gretchen is next to Carl - Gretchen has always had a thing for bald guys ;)
Monday, Tuesday, Wednesday, Thursday and Friday March 15-March 19, 2010 Carl went to work and drove as well. Carl has been enjoying driving his firebird. I am enjoying him taking Miranda to band (and the middle schoolers when they miss/don't take the bus). We all are enjoying the fact that the snow is gone and spring seems to be near.
Friday, March 19, 2010 was Anthony's 14th birthday, and we had friends over for Anthony's Birthday party. What a sweet weekend. Anthony's birthday cake, 3 pies (1 FRENCH SILK, Carl's favorite), and tons of cookies and sweets flowed into the house. Appetite or not, NO ONE is loosing any weight here. The children enjoyed the sugar rush all weekend.
Recovering from Chemo Round No. 4 has been the hardest to Carl to date. Not that Carl can't work, or anything, but he really gets tired early, and needs to crash. At about 9:00 PM. Before my children go to bed. [A funny aside - On Monday, March 22, 2010, I kept Carl up until 10:00 PM watching the TV show Castle. Carl could not get up the next morning until he slept in an extra hour.] Carl can go during the day, but then his body stops until he gets basically 9 hours of sleep. That is totally OK, but it is a huge change from pre-chemo days, when 5 to 6 hours worked as well.
Carl's appetite hasn't jumped back, and food sort of doesn't taste right. In fact, on Friday March 20, 2010, I sort of wanted to take Carl in for blood work just to make sure he wasn't low in potassium or something weird but critical, but Carl talked me out of it, so we went and bought XBOX games with the children instead. Sort of responsible, don't you think?And Carl is off to work this week again! (The week starting March 22, 2010.)
Under the schedule we were sort of on, Carl could have started an inpatient chemotherapy session this Monday, March 22, 1010. But the Doctors sort of indicated that Carl might want to take a break from chemo. (Well, yeah, but... I mean, of course, who wouldn't want a break from chemo, it's not exactly fun, but isn't it, like, sort of required?) Actually the Doctors suggested Carl could take a break after Round No. 3. But Carl and I decided if we get a choice of taking a break, after Round 4 might work better for our schedule. Then Carl wouldn't be getting Chemotherapy on his Birthday, March 25. (which is tomorrow, as I write this post.) Also, we could stretch things out "the break" so Carl wouldn't be recovering from chemotherapy over Easter, and perhaps we could take a quick vacation to Florida. The timing with Chemotherapy worked, but the finances and work schedule didn't - the fares are high the week after Easter, and co-workers already have the days off, and so... for the time being we sort of didn't book a Florida vacation.
March 29, 2010, we were supposed to meet with Carl's Doctor to discuss the next steps. But Carl sort of decided he wanted to figure out what was next a little sooner, especially since we are probably not taking a vacation over Easter. So today, our appointments have changed, and the next medical step has been "prescribed" for Carl. Carl will likely start concurrent radiation and chemotherapy on his leg, and next week we meet with the radiation Doctor to figure out what that means. How many days, when, etc.
Ugh. Maybe I will book a vacation. I sort of liked not having anything looming over us for a while.
P.S. People have asked if we are satisfied with our Doctors and the treatments we are getting. The answer is yes. (not even sort of!) I believe we are getting great care. I am frequently grateful that what I consider a state-of-the-art facility is only 30 minutes away. The Milwaukee Medical Complex has great technology, dedicated staff, and even reasonably good food ;) My understanding of the cancer centers around Wisconsin are that if you want to treat a sarcoma in Wisconsin, we are at the right place. Our insurance has been paying! If I had to choose a time period in history to get cancer, (and I couldn't choose the future), I would choose this day and age, this millenium, this decade, over any that have preceded. But in the end, I am not sleeping easier at night then I was in, say, November 2009.
Sarcoma cancers are rare, and the protocols for treatment are not nearly as defined as they are for a breast or prostate cancer, or melanoma, or lymphomas, or leukemias, etc. And while the outcomes for the aforementioned cancers are improving all the time, the treatments and decisions faced by the patients are not fun or easy. I feel Carl and I are in good hands. I hope we are in God's hands. But I also wish there was a sure-fire known "cure" for sarcomas, and all the other 600 cancers out there, and while Carl and I stumble our way through our cancer education, sometimes I might be sort of wishy-washy and unenthusiastic about our current journey.
There is one thing that I am totally sure of, though. I appreciate and am grateful for all the love and care, help and support, food and prayers that have been given to us in these last three months. Thank you very much!
Tuesday, March 16, 2010
Morning Routine without Carl
When Carl is in inpatient Chemo, the morning routine falls to me alone. (Within days of Carl starting in-patient chemo, I went and bought 3 Alarm clocks.)
I was not cut out for single parenting.
Here I will describe what mornings are like for me, getting up 4 (essentially) teenagers going from 5:30 AM to 8:30 AM. Frankly, I think this will probably be boring reading.
[My children are 15, 13, 12, and 10 right now. After April 14, they will be 16, 14, 12, and 11.] We have 4 birthdays to survive in the next 30 days.
Let me state the obvious from at the beginning : I am not, and have never been, a morning person. I can operate in the early AM, (what parent of more then 2 children can't), but don't expect me to be happy and peppy.
5:40 AM My hideously loud and obnoxious alarm goes off. As soon as the alarm goes off, I hit the snooze button, and get up (really, that button is slammed within 2-4 rings). Staying in bed would only prolong the painful morning process. I go to get Tom up. Tom wants 5 more minutes. Carl used to give Tom a gentle wake-up in the morning, fun and playful, and 5 minutes later reappearing and having a fun and mild struggle with Tom as Tom tried to negotiate more sleep time.
I learned quickly with Carl's 1st inpatient chemo that this was a waste of time for me. I guess one could say I am in no mood to hear 4 children's worth of negotiation in the early morning. I try to be pretty much non-verbal as I get the kids up, since they don't want to listen anyway. They only want to engage in verbal negotiations for their own way and to delay the inevitable. I also don't want to wake up the other kids earlier then they need to be woken up, so like I said, I say very little.
I drag Tom's feet off the bed and on to the floor, and I keep doing that. He protests, and I say, I'll leave you alone once you are in the bathroom. I get him out of bed, upright, and steer him into the bathroom. Many times I think Tom's eyes are closed for all or part of this. Once I get him to the bathroom, the call of nature makes him want privacy there. I go downstairs, get Tom's medicines, go back upstairs, and I go lay down until the alarm goes off again, 9 minutes later. Sometimes I am back in the bed within three minutes of the alarm originally going off, at perhaps 5:43.
5:49 AM My alarm rings again. I hit the snooze button, remember? (A nine minute snooze is crucial to my morning routine). Now it is time to get Tom into the shower. I get up and coach Tom through this step. On rare occasions Tom will actually be asleep on the throne, then I know he stayed up too late the night before. I give Tom his medicines and a cup of water, and it is usually easy to get Tom into the shower at this point. (He will be verbally protesting, but I only reply "Get in the shower" 4 words. It is pointless (and painful) to engage a child in conversation within 20 minutes of waking them up. I used to leave him at this point, (He wants me to leave, and believe me, so do I) . Now I stand there and tell him I won't leave until his hair is wet. This is because sometimes I'd actually come back when the next alarm went off and he would still be standing there, totally dry, with his hands hanging in the water, enjoying the feel of the water splashing his hands, for 9 minutes!
Once I have visual confirmation that the hair is indeed wet, I go gather clean clothes for the day for Tom, and leave them on a chair in the bathroom. Praise the Lord, (and thank you to all of his therapists) Tom can fully dress himself. Then I collapse in MY bed and until the alarm goes off again. (Tom has Down Syndrome.)
5:58 AM My alarm goes off, I hit snooze and get up. I tell Tom to get out of the shower. I ask him if he has shampooed his hair, and the answer is almost always yes (now), because if the answer is no at this point, I help him wash his hair, and he hates that. (Tom bless him, doesn't cheat and say yes when he hasn't washed his hair. My other children aren't always as honest.) You can tell he has washed his hair because he uses way to much shampoo. I swear that child can use up to 1/4 of a bottle of shampoo. I try now and then to get him to cut down on the amount of shampoo he uses, but I am choosing my battles to conserve my energy.
Once he is out of the shower, I leave him to get dressed, and I lay back down in my oh so comfortable bed until the alarm goes off again.
6:07 AM The long stretch. My alarm goes off, I hit snooze and get up. Tom will be dressed, usually not in the clothes I laid out. I rarely care, as long as he used the clean socks and underwear, and whatever he picked is reasonable clean. Arguing with fashion choices is an inefficient use of my energy. Tom is usually waiting for me to reappear, dressed but doing something non-mission critical. I have him "finish up" upstairs - get his watch, wallet, glasses, and other miscellaneous books and or cards he feels he needs for the day. With luck, this will be the last time he is upstairs. Then I steer him downstairs, (usually he is protesting that he wants more time) with bribes of breakfast - "We better hurry up or we won't have time for breakfast." I try to figure out something that he wants to eat. (He rarely eats breakfast cereals) I get him a juice or milk, and sometimes he makes his own peanut butter or salami sandwich) I sit at the table and watch him eat, and/or gather his shoes, coat, ...
6:16 AM My alarm goes off. Ugh. Now I have to run upstairs and hit the snooze button. Then I go back downstairs, and spend time with Tom, put the dog outside, etc.
6:25 AM The alarm goes off. Ugh. Now I have to run upstairs and hit the snooze button, again. I detour to the boys room to tell Anthony to get in the shower if he hasn't already started. (Anthony now has an alarm clock I turn on almost every night (he doesn't) and is set to go off at 6:20AM ) The 2 boys have to get ready for middle school. There used to be arguments of who would get to go into the shower last, but now it's always Anthony going first. He wants a long 20+ minute shower with absolute privacy, and this is the only time I am going to allow him to get it. Frequently Nathan is still totally not moving at this time, anyway, and Nathan takes a very short shower. Nathan can always make the bus, so Anthony is the one who has to go first. I can hear that someone is in the shower. YEAH. I will frequently knock on the door and say "Have you washed your hair yet?" Answer is usually an angry "NO, leave me alone." "Do it NOW" I'll reply, and go down stairs. Now it is time to stop Tom from eating, by now he is finally interested in eating. Get your shoes and coat on, and you can eat until the van is here. Sometimes I give him a nutri-grain bar for the van ride. If Tom hasn't eaten anything, because somewhere in the time frame the 9 minutes lapped, he can eat breakfast at school, the van arrives there so early. I watch for the van. Hallelujah, the van arrives at about 6:30 AM. I bring the dog inside, and I am back in my warm comfortable bed when the alarm next goes off...
6:34 AM The alarm goes off. I hit the snooze button.
6:42 AM The alarm goes off. I hit the snooze button, and check that the kids are moving. By about now either Nathan is banging on the door telling Anthony to get out of the shower, or I will go in and wake up Nathan gently, (this is rare) and tell Anthony to get out of the shower. Mostly my children, as antisocial in the morning as me, don't want to interact with me, and they keep ahead of schedule just enough so that they can tell me to go away. Sometimes at this time I don't even have to get out of bed, Anthony will yell down the hall that he's out of the shower, or Nathan will report that Anthony is out of the shower. (Thank you Nathan, you are a blessing in the morning. A self sufficient child.) On Monday, Wednesday and Thursday, this is the time that I go into wake up Miranda, because she is goes in early to school on these days.
6:53 AM The alarm goes off. I hit the snooze button, and don't check the kids, especially on Tuesdays and Thursdays. Bliss.
7:02 AM The alarm goes off. I hit the snooze button, and check the kids. If either of the two boys are still upstairs, it's a bad sign. But now they are getting good at the routine, my alarm clock can be heard from almost any point in the house, and usually they are on-track. If not, I chase them downstairs. With luck, this will be the last time they are upstairs. I frequently have to remind someone to get their socks on, etc.
7:11 AM The alarm goes off. I hit the snooze button. Now I have to make sure that the children will make the bus. I must get up. On Mon, Wed and Thursday, I have to drive Miranda in, so I get dressed. I never take a shower before the boys are gone in the morning. There is no time. Miranda can be in the shower... Now the children are in a state of confusion, wanting and not finding shoes, coats, etc. I am on bus watch duty. THANK YOU LORD that the weather is getting nicer, and I don't have to feel guilty when they don't have mittens, coats, etc. There are homework project and permission slips the children have conveniently lost or forgotten, Chaos reins.
7:15 - 7:20 AM The Steffen Middle School bus comes and goes. On Monday, and Wednesday, I now drive Miranda to the Steffen Middle School. Such Irony. WHY can't Miranda take the bus with her brothers to the Steffen Middle School?
[ This is a total aside ----> ]
Apparently (says the bus company) the Mequon Thiensville District Office Business Manager has deemed it a bad practice to allow the elementary school band students from Wilson School ride the bus to the required attendance Steffen Middle School band practice. (Allowing students to ride the Middle School bus to band practice used to be allowed in previous years). In 2009-2010 school year, the district does bus in the Oriole Lane children to the required Steffen Middle school band practice. The private schooled elementary children do get to ride the Middle school bus.
The bus company, saying their hands are tied, has informed the bus drivers to enforce the District Office Business Manager's decision, and so the bus drivers have taken it upon themselves to embarrass, yell at and scare into tears any poor 5th grade band student whose parent tries to put them on the bus. (Not while the parent is there, you understand, of course.) There are about 25 Wilson 5th grade band students that are impacted by this problem, and I think this problems happens to an equivalent number of orchestra students.
I usually think about this state of affairs while I am driving Miranda to band practice at the Middle School. Usually I arrive at Steffen Middle School with Miranda at about the same time that the Oriole Lane Band Students arrive in their bus.
I actually don't mind so much that I have to drive Miranda in 3 days a week. It cuts 1 hour off the morning routine. I am back home by about 7:30-7:40, on Monday, Wednesday and Thursday. Then I race upstairs, and crawl into my warm and waiting bed, and read, relax, and sometimes fall asleep.
On the days that Miranda is not driven in, I don't wake her until about 7:45-8:00, well after the middle school boys have left on the Steffen bus. It is best to let her wake up slowly, then she is usually pleasant. She used to always be pleasant in the morning, but she misses her dad, her world is being tumbled about, and so sometimes she acts out, 5th grade-zilla like. That's why I feel she now qualifies as an almost teenager. If she wakes up particularly late, and is pleasant, I'll drive her in, (because, really, I am already used to it...) My main goal is to have Miranda be pleasant AND take the bus in. I haven't kept statistics on how often this has happened.
There have been at least 2 or 3 times in the 2009-2010 school year (and I think on chemo days) when she was up so early and ready when the boys got on the bus, that I showered and we went to Einstein Bagels and ate breakfast there. (Einstein Bagels for Breakfast was fun. We would see some of the same Elementary school kids and parents eating breakfast there as well - not Wilson parents though, it is miles out of the way for Wilson students.) But that was awfully early, and Miranda (and I) would usually rather sleep in, and we haven't done that recently.
The hateful alarm is silenced for the rest of the day once Miranda is up and out of the shower. She eats breakfast slowly, dreamily, and I watch and drink a glass of milk. Since she is a slow eater, I'll clean up the debris field left by the others at the table, empty (and reload!) the dish washer, and put the dog in or out a couple of times. We will watch for the bus while I brush her hair (if she chooses to let me that morning, and if there is time.) At 8:20AM the Elementary School bus comes.
Most days, all the energy is sucked out of me by now, and I go back into bed. I race upstairs, and crawl into my warm and waiting bed, and read, relax, and sometimes even fall asleep. This is possibly not the best sleep pattern to get into. Remember, though, that this is after making four children get out of the house from 5:30 AM to 7:20 or 8:20 AM, to 3 different schools.
I frequently feel like I have run a marathon by the time all of the children are gone.
Some interesting points:
I was not cut out for single parenting.
Here I will describe what mornings are like for me, getting up 4 (essentially) teenagers going from 5:30 AM to 8:30 AM. Frankly, I think this will probably be boring reading.
[My children are 15, 13, 12, and 10 right now. After April 14, they will be 16, 14, 12, and 11.] We have 4 birthdays to survive in the next 30 days.
Let me state the obvious from at the beginning : I am not, and have never been, a morning person. I can operate in the early AM, (what parent of more then 2 children can't), but don't expect me to be happy and peppy.
5:40 AM My hideously loud and obnoxious alarm goes off. As soon as the alarm goes off, I hit the snooze button, and get up (really, that button is slammed within 2-4 rings). Staying in bed would only prolong the painful morning process. I go to get Tom up. Tom wants 5 more minutes. Carl used to give Tom a gentle wake-up in the morning, fun and playful, and 5 minutes later reappearing and having a fun and mild struggle with Tom as Tom tried to negotiate more sleep time.
I learned quickly with Carl's 1st inpatient chemo that this was a waste of time for me. I guess one could say I am in no mood to hear 4 children's worth of negotiation in the early morning. I try to be pretty much non-verbal as I get the kids up, since they don't want to listen anyway. They only want to engage in verbal negotiations for their own way and to delay the inevitable. I also don't want to wake up the other kids earlier then they need to be woken up, so like I said, I say very little.
I drag Tom's feet off the bed and on to the floor, and I keep doing that. He protests, and I say, I'll leave you alone once you are in the bathroom. I get him out of bed, upright, and steer him into the bathroom. Many times I think Tom's eyes are closed for all or part of this. Once I get him to the bathroom, the call of nature makes him want privacy there. I go downstairs, get Tom's medicines, go back upstairs, and I go lay down until the alarm goes off again, 9 minutes later. Sometimes I am back in the bed within three minutes of the alarm originally going off, at perhaps 5:43.
5:49 AM My alarm rings again. I hit the snooze button, remember? (A nine minute snooze is crucial to my morning routine). Now it is time to get Tom into the shower. I get up and coach Tom through this step. On rare occasions Tom will actually be asleep on the throne, then I know he stayed up too late the night before. I give Tom his medicines and a cup of water, and it is usually easy to get Tom into the shower at this point. (He will be verbally protesting, but I only reply "Get in the shower" 4 words. It is pointless (and painful) to engage a child in conversation within 20 minutes of waking them up. I used to leave him at this point, (He wants me to leave, and believe me, so do I) . Now I stand there and tell him I won't leave until his hair is wet. This is because sometimes I'd actually come back when the next alarm went off and he would still be standing there, totally dry, with his hands hanging in the water, enjoying the feel of the water splashing his hands, for 9 minutes!
Once I have visual confirmation that the hair is indeed wet, I go gather clean clothes for the day for Tom, and leave them on a chair in the bathroom. Praise the Lord, (and thank you to all of his therapists) Tom can fully dress himself. Then I collapse in MY bed and until the alarm goes off again. (Tom has Down Syndrome.)
5:58 AM My alarm goes off, I hit snooze and get up. I tell Tom to get out of the shower. I ask him if he has shampooed his hair, and the answer is almost always yes (now), because if the answer is no at this point, I help him wash his hair, and he hates that. (Tom bless him, doesn't cheat and say yes when he hasn't washed his hair. My other children aren't always as honest.) You can tell he has washed his hair because he uses way to much shampoo. I swear that child can use up to 1/4 of a bottle of shampoo. I try now and then to get him to cut down on the amount of shampoo he uses, but I am choosing my battles to conserve my energy.
Once he is out of the shower, I leave him to get dressed, and I lay back down in my oh so comfortable bed until the alarm goes off again.
6:07 AM The long stretch. My alarm goes off, I hit snooze and get up. Tom will be dressed, usually not in the clothes I laid out. I rarely care, as long as he used the clean socks and underwear, and whatever he picked is reasonable clean. Arguing with fashion choices is an inefficient use of my energy. Tom is usually waiting for me to reappear, dressed but doing something non-mission critical. I have him "finish up" upstairs - get his watch, wallet, glasses, and other miscellaneous books and or cards he feels he needs for the day. With luck, this will be the last time he is upstairs. Then I steer him downstairs, (usually he is protesting that he wants more time) with bribes of breakfast - "We better hurry up or we won't have time for breakfast." I try to figure out something that he wants to eat. (He rarely eats breakfast cereals) I get him a juice or milk, and sometimes he makes his own peanut butter or salami sandwich) I sit at the table and watch him eat, and/or gather his shoes, coat, ...
6:16 AM My alarm goes off. Ugh. Now I have to run upstairs and hit the snooze button. Then I go back downstairs, and spend time with Tom, put the dog outside, etc.
6:25 AM The alarm goes off. Ugh. Now I have to run upstairs and hit the snooze button, again. I detour to the boys room to tell Anthony to get in the shower if he hasn't already started. (Anthony now has an alarm clock I turn on almost every night (he doesn't) and is set to go off at 6:20AM ) The 2 boys have to get ready for middle school. There used to be arguments of who would get to go into the shower last, but now it's always Anthony going first. He wants a long 20+ minute shower with absolute privacy, and this is the only time I am going to allow him to get it. Frequently Nathan is still totally not moving at this time, anyway, and Nathan takes a very short shower. Nathan can always make the bus, so Anthony is the one who has to go first. I can hear that someone is in the shower. YEAH. I will frequently knock on the door and say "Have you washed your hair yet?" Answer is usually an angry "NO, leave me alone." "Do it NOW" I'll reply, and go down stairs. Now it is time to stop Tom from eating, by now he is finally interested in eating. Get your shoes and coat on, and you can eat until the van is here. Sometimes I give him a nutri-grain bar for the van ride. If Tom hasn't eaten anything, because somewhere in the time frame the 9 minutes lapped, he can eat breakfast at school, the van arrives there so early. I watch for the van. Hallelujah, the van arrives at about 6:30 AM. I bring the dog inside, and I am back in my warm comfortable bed when the alarm next goes off...
6:34 AM The alarm goes off. I hit the snooze button.
6:42 AM The alarm goes off. I hit the snooze button, and check that the kids are moving. By about now either Nathan is banging on the door telling Anthony to get out of the shower, or I will go in and wake up Nathan gently, (this is rare) and tell Anthony to get out of the shower. Mostly my children, as antisocial in the morning as me, don't want to interact with me, and they keep ahead of schedule just enough so that they can tell me to go away. Sometimes at this time I don't even have to get out of bed, Anthony will yell down the hall that he's out of the shower, or Nathan will report that Anthony is out of the shower. (Thank you Nathan, you are a blessing in the morning. A self sufficient child.) On Monday, Wednesday and Thursday, this is the time that I go into wake up Miranda, because she is goes in early to school on these days.
6:53 AM The alarm goes off. I hit the snooze button, and don't check the kids, especially on Tuesdays and Thursdays. Bliss.
7:02 AM The alarm goes off. I hit the snooze button, and check the kids. If either of the two boys are still upstairs, it's a bad sign. But now they are getting good at the routine, my alarm clock can be heard from almost any point in the house, and usually they are on-track. If not, I chase them downstairs. With luck, this will be the last time they are upstairs. I frequently have to remind someone to get their socks on, etc.
7:11 AM The alarm goes off. I hit the snooze button. Now I have to make sure that the children will make the bus. I must get up. On Mon, Wed and Thursday, I have to drive Miranda in, so I get dressed. I never take a shower before the boys are gone in the morning. There is no time. Miranda can be in the shower... Now the children are in a state of confusion, wanting and not finding shoes, coats, etc. I am on bus watch duty. THANK YOU LORD that the weather is getting nicer, and I don't have to feel guilty when they don't have mittens, coats, etc. There are homework project and permission slips the children have conveniently lost or forgotten, Chaos reins.
7:15 - 7:20 AM The Steffen Middle School bus comes and goes. On Monday, and Wednesday, I now drive Miranda to the Steffen Middle School. Such Irony. WHY can't Miranda take the bus with her brothers to the Steffen Middle School?
[ This is a total aside ----> ]
Apparently (says the bus company) the Mequon Thiensville District Office Business Manager has deemed it a bad practice to allow the elementary school band students from Wilson School ride the bus to the required attendance Steffen Middle School band practice. (Allowing students to ride the Middle School bus to band practice used to be allowed in previous years). In 2009-2010 school year, the district does bus in the Oriole Lane children to the required Steffen Middle school band practice. The private schooled elementary children do get to ride the Middle school bus.
The bus company, saying their hands are tied, has informed the bus drivers to enforce the District Office Business Manager's decision, and so the bus drivers have taken it upon themselves to embarrass, yell at and scare into tears any poor 5th grade band student whose parent tries to put them on the bus. (Not while the parent is there, you understand, of course.) There are about 25 Wilson 5th grade band students that are impacted by this problem, and I think this problems happens to an equivalent number of orchestra students.
I usually think about this state of affairs while I am driving Miranda to band practice at the Middle School. Usually I arrive at Steffen Middle School with Miranda at about the same time that the Oriole Lane Band Students arrive in their bus.
I actually don't mind so much that I have to drive Miranda in 3 days a week. It cuts 1 hour off the morning routine. I am back home by about 7:30-7:40, on Monday, Wednesday and Thursday. Then I race upstairs, and crawl into my warm and waiting bed, and read, relax, and sometimes fall asleep.
On the days that Miranda is not driven in, I don't wake her until about 7:45-8:00, well after the middle school boys have left on the Steffen bus. It is best to let her wake up slowly, then she is usually pleasant. She used to always be pleasant in the morning, but she misses her dad, her world is being tumbled about, and so sometimes she acts out, 5th grade-zilla like. That's why I feel she now qualifies as an almost teenager. If she wakes up particularly late, and is pleasant, I'll drive her in, (because, really, I am already used to it...) My main goal is to have Miranda be pleasant AND take the bus in. I haven't kept statistics on how often this has happened.
There have been at least 2 or 3 times in the 2009-2010 school year (and I think on chemo days) when she was up so early and ready when the boys got on the bus, that I showered and we went to Einstein Bagels and ate breakfast there. (Einstein Bagels for Breakfast was fun. We would see some of the same Elementary school kids and parents eating breakfast there as well - not Wilson parents though, it is miles out of the way for Wilson students.) But that was awfully early, and Miranda (and I) would usually rather sleep in, and we haven't done that recently.
The hateful alarm is silenced for the rest of the day once Miranda is up and out of the shower. She eats breakfast slowly, dreamily, and I watch and drink a glass of milk. Since she is a slow eater, I'll clean up the debris field left by the others at the table, empty (and reload!) the dish washer, and put the dog in or out a couple of times. We will watch for the bus while I brush her hair (if she chooses to let me that morning, and if there is time.) At 8:20AM the Elementary School bus comes.
Most days, all the energy is sucked out of me by now, and I go back into bed. I race upstairs, and crawl into my warm and waiting bed, and read, relax, and sometimes even fall asleep. This is possibly not the best sleep pattern to get into. Remember, though, that this is after making four children get out of the house from 5:30 AM to 7:20 or 8:20 AM, to 3 different schools.
I frequently feel like I have run a marathon by the time all of the children are gone.
Some interesting points:
- Tom, the High Schooler, (who has Down Syndrome), is nowhere near ready to get up and make the bus without major adult intervention.
- Anthony almost never turns on his alarm clock the night before, but when he was sleeping over at someone else's house, he turned on the alarm to go off on Saturday. Fortunately I checked the alarm Friday evening. Sweet child.
- Nathan, the self sufficient child, is a blessing.
- Miranda is getting very used to me being attentive to her - Could you go upstairs and get this, or that... I'm now looking forward to her going to middle School next year, out at 7:20AM.
- Yes, we have 4 children sharing one large bathroom with a shower. No way am I letting them take a shower in my MB bathroom.
- Having children take a shower the night before isn't really an option. It takes long enough to get them to go to bed, without that delay tactic.
- I don't encourage my children to become morning people because, as God knows, they need their sleep and they won't go to bed at a reasonable time.
- Lastly, Carl still has the harder job on those days. Chemotherapy is no picnic.
Monday, March 8, 2010
Chemotherapy Round No. 4 done
Carl completed his 4th round of chemotherapy (third round of inpatient Chemotherapy) on Friday, March 5, 2010. He was in the Froedtert Hospital continuously from Monday, March 1, 2010 through Friday.
Carl and I think he is tolerating the chemotherapy very well, although Carl said Thursday and Friday were really bad. I tried to get him to define it, and he said that Thursday alone felt like 40 hours of having the flu. The bed is always moving and he thinks he was awake almost every 2 hours.
Here is a photo of Carl on Thursday. On Thursday, he can hardly open his eyes. It was a hugely busy week for the children and me, and only Miranda got a chance to visit Carl in the Hospital, and only on Thursday. (Visiting earlier in the week is preferred.) The other three children wanted to stay home. I'm not sure what to think about that, but Miranda and I had a nice visit.
The photo below shows what Carl and Miranda think of chemotherapy. But we don't hate the chemo, oh no. Hate the cancer, love the treatments. Or at least tolerate them. Technology and prayers will keep Carl alive.
So this is what the inpatient rounds of chemotherapy infusions are like (approximately- don't go using this as a recipe for in-home care) for treating Carl's sarcoma (Mon-Friday Jan 18-22, 2010; Mon-Friday Feb 8-12, 2010; Mon-Friday March 1-5, 2010).
Chemotherapy for Round 2, 3, and 4:
24 hours after the end of the in-patient chemotherapy, on either Saturday or Sunday, Carl has to go back to the Medical complex, this time the Cancer Center's 3rd floor Day hospital, for the Neulasta shot.
This is a picture of the Neulasta (also known as pegfilgrastin) injection. The instructions say "do not shake tube". So now I wonder, what happens if you shake the tube? Will it blow up? Or just not work? Whatever. Don't shake it. We want it to do whatever it is that it does.
(Dr. Seuss could say it better.)
[Neulasta promotes the white blood cell count, since the chemotherapy just wiped out all the white blood cells as a side effect, and white blood cells are kind of nice to have around.]
And finally, here is Carl walking out of the 3rd floor Cancer Center Day Hospital. Maybe someday I will tell you a funny story about this picture.
The Cancer Center is a beautiful facility that just opened in May 15, 2008. (I think the Cancer Center is officially called The Froedtert and Medical College of Wisconsin Clinical Cancer Center, [that's 10 words...] I've also seen it referred to as the MCW Clinical Cancer Center - much more catchy.) The titles leave me wondering: just what does the work "Clinical" add to the name, besides three syllables, I mean. A warm and fuzzy feeling? Whatever. Beautiful building, $95 million dollars of technology, and Carl can't wait to leave.
P.S. The MCW acronym is frequently referred to as M-COW. Very Wisconsin like, don't you think?
Carl and I think he is tolerating the chemotherapy very well, although Carl said Thursday and Friday were really bad. I tried to get him to define it, and he said that Thursday alone felt like 40 hours of having the flu. The bed is always moving and he thinks he was awake almost every 2 hours.
Here is a photo of Carl on Thursday. On Thursday, he can hardly open his eyes. It was a hugely busy week for the children and me, and only Miranda got a chance to visit Carl in the Hospital, and only on Thursday. (Visiting earlier in the week is preferred.) The other three children wanted to stay home. I'm not sure what to think about that, but Miranda and I had a nice visit.
The photo below shows what Carl and Miranda think of chemotherapy. But we don't hate the chemo, oh no. Hate the cancer, love the treatments. Or at least tolerate them. Technology and prayers will keep Carl alive.
So this is what the inpatient rounds of chemotherapy infusions are like (approximately- don't go using this as a recipe for in-home care) for treating Carl's sarcoma (Mon-Friday Jan 18-22, 2010; Mon-Friday Feb 8-12, 2010; Mon-Friday March 1-5, 2010).
Chemotherapy for Round 2, 3, and 4:
- Over 2 hours of time, Simultaneously
- Saline solution, 1400 mg.
- Ondansetron 16 mg - Anti Nausea medication
- Dexamethasone 20 mg - Anti Nausea medication
- Over the next 22 hours of time
- Mesna 700 mg - this protects the kidneys linings from bleeding, which is a side effect from taking Ifosfamide.
- Ifosfamide, 3800 mg in 500 ml of saline solution.
- Adriomycin, 34 mg in 500 ml of saline solution. This is the heavy hitting drug, and the main difference from the outpatient chemotherapy.
- When those bags are empty, a saline flush of the IV ports, followed by heparin, and then Carl is disconnected so that he can take a shower. Once the shower is over, he is connected up again, and the next 22 hours infusion starts. This is done 4 times in all.
- After 4 days, Over the last 6 hours of time
- Saline solution, 1400 mg.
- Mesna 1400 mg - Mesna protects the kidneys linings from bleeding, which is a side effect from taking Ifosfamide.
- When those last bags are empty, a saline flush of the IV ports, followed by heparin, and then Carl is disconnected. And he can go home. Yeah. Tired.
24 hours after the end of the in-patient chemotherapy, on either Saturday or Sunday, Carl has to go back to the Medical complex, this time the Cancer Center's 3rd floor Day hospital, for the Neulasta shot.
This is a picture of the Neulasta (also known as pegfilgrastin) injection. The instructions say "do not shake tube". So now I wonder, what happens if you shake the tube? Will it blow up? Or just not work? Whatever. Don't shake it. We want it to do whatever it is that it does.
(Dr. Seuss could say it better.)
[Neulasta promotes the white blood cell count, since the chemotherapy just wiped out all the white blood cells as a side effect, and white blood cells are kind of nice to have around.]
And finally, here is Carl walking out of the 3rd floor Cancer Center Day Hospital. Maybe someday I will tell you a funny story about this picture.
The Cancer Center is a beautiful facility that just opened in May 15, 2008. (I think the Cancer Center is officially called The Froedtert and Medical College of Wisconsin Clinical Cancer Center, [that's 10 words...] I've also seen it referred to as the MCW Clinical Cancer Center - much more catchy.) The titles leave me wondering: just what does the work "Clinical" add to the name, besides three syllables, I mean. A warm and fuzzy feeling? Whatever. Beautiful building, $95 million dollars of technology, and Carl can't wait to leave.
P.S. The MCW acronym is frequently referred to as M-COW. Very Wisconsin like, don't you think?
Tuesday, March 2, 2010
February 2010 test results
On Monday, Feb 22, 2010, Carl had two MRI's and a CAT scan to see how the tumor is responding to the radiation and chemotherapy. The MRI's were on his leg and neck, and the CAT scan was on his chest.
Returning to the theme of tests in High School and College: In school, when you got your test back, you would understand the meaning. To make it easier, the tests could even be scored A, B, C, D or F. I guess I wouldn't want the medical community to score medical tests this way, but I can say that it might make understanding tests results easier.
Carl's CAT scan result is the easiest to understand. Previously (Dec 2009) Carl had two small nodules of (presumably) tumor in his lungs. Now the results state "Right upper lobe nodule has shrunken considerably. No other nodules are visible."; and "no new nodules".
The tumors in his leg and neck show signs of some shrinkage: As the report says - "Slight interval decrease in the size overall." (Specific, hey? Is that an A, B, C or what?)
I got a sort of insight on Sunday. The tests, and test results, aren't really for the patient. They are for the Doctors, who will now review the treatments to date and their effect on the tumor. The Doctors will then get down to the business of refining the treatment plan. This review will probably happen at a tumor board on Wednesday, March 3, 2010.
When Carl and I were presented with the facts of Carl's sarcoma in December 2009, the Doctors we saw suggested that Carl would be "in treatment" for all of 2010. "Treatment" would consist of radiation, chemotherapy, and "local control". Local control consists of surgeries, Gamma knife procedures, laser ablations, procedures for removing the tumor, etc.
Of course, if the chemotherapy worked wonders, and killed the tumor quickly, Carl might get lucky and not need "local control surgeries". Carl might be able to not require treatments for all of 2010 and beyond. The Doctors indicated that this was a possible, although not likely outcome. This is what I was praying for.
I was hoping for a miracle. I wanted the chemotherapy to be a quick fix and melt all of the tumors away like butter in a microwave. This may have happened (did happen?) to the small tumors in Carl's lung, which means that Carl has avoided one or two small "local control" surgeries to his lungs. (Yeah!) [Had the lung spots required surgery, the lung spots might have been removed on separate weeks to allow for better recovery. Lung surgery may mean (usually means?) that the lung will collapse and have to be re-inflated, which carries risks with it. Avoiding a lung surgery (or two) is good.]
So Carl has avoided 2 local control procedures, but ... ???
While it is still a possibility that the tumors will shrink and melt away, the current results might suggest that Carl's tolerance for the chemotherapy will run out BEFORE the remaining tumor is gone. That means longer treatments, more radiation, and more "local control". Treatments for all of 2010. Bummer.
For now, Carl is still tolerating chemotherapy well, and on Monday, March 1, 2010, he started Round No. 4 : Inpatient Chemotherapy at Froedtert Hospital on the 4th floor North Tower. He should get out on Friday, March 5, 2010. May this treatment wither away the tumor in his leg and neck.
Somehow, I felt a little more hopeful before the test results came out, even though the tests indicated nice results. I wanted miraculous results.
I guess the miracle is that, in 2010, in the United States, close to our home, there is an arsenal of treatments to throw at the sarcoma tumors, and that Carl is here and getting those treatments. Many others in the world would not be as fortunate.
Hang in there Carl! I am praying for you! And so are many others!
Thank you to all who are praying for Carl.
Returning to the theme of tests in High School and College: In school, when you got your test back, you would understand the meaning. To make it easier, the tests could even be scored A, B, C, D or F. I guess I wouldn't want the medical community to score medical tests this way, but I can say that it might make understanding tests results easier.
Carl's CAT scan result is the easiest to understand. Previously (Dec 2009) Carl had two small nodules of (presumably) tumor in his lungs. Now the results state "Right upper lobe nodule has shrunken considerably. No other nodules are visible."; and "no new nodules".
The tumors in his leg and neck show signs of some shrinkage: As the report says - "Slight interval decrease in the size overall." (Specific, hey? Is that an A, B, C or what?)
I got a sort of insight on Sunday. The tests, and test results, aren't really for the patient. They are for the Doctors, who will now review the treatments to date and their effect on the tumor. The Doctors will then get down to the business of refining the treatment plan. This review will probably happen at a tumor board on Wednesday, March 3, 2010.When Carl and I were presented with the facts of Carl's sarcoma in December 2009, the Doctors we saw suggested that Carl would be "in treatment" for all of 2010. "Treatment" would consist of radiation, chemotherapy, and "local control". Local control consists of surgeries, Gamma knife procedures, laser ablations, procedures for removing the tumor, etc.
Of course, if the chemotherapy worked wonders, and killed the tumor quickly, Carl might get lucky and not need "local control surgeries". Carl might be able to not require treatments for all of 2010 and beyond. The Doctors indicated that this was a possible, although not likely outcome. This is what I was praying for.
I was hoping for a miracle. I wanted the chemotherapy to be a quick fix and melt all of the tumors away like butter in a microwave. This may have happened (did happen?) to the small tumors in Carl's lung, which means that Carl has avoided one or two small "local control" surgeries to his lungs. (Yeah!) [Had the lung spots required surgery, the lung spots might have been removed on separate weeks to allow for better recovery. Lung surgery may mean (usually means?) that the lung will collapse and have to be re-inflated, which carries risks with it. Avoiding a lung surgery (or two) is good.]
So Carl has avoided 2 local control procedures, but ... ???
While it is still a possibility that the tumors will shrink and melt away, the current results might suggest that Carl's tolerance for the chemotherapy will run out BEFORE the remaining tumor is gone. That means longer treatments, more radiation, and more "local control". Treatments for all of 2010. Bummer.
For now, Carl is still tolerating chemotherapy well, and on Monday, March 1, 2010, he started Round No. 4 : Inpatient Chemotherapy at Froedtert Hospital on the 4th floor North Tower. He should get out on Friday, March 5, 2010. May this treatment wither away the tumor in his leg and neck.
Somehow, I felt a little more hopeful before the test results came out, even though the tests indicated nice results. I wanted miraculous results.
I guess the miracle is that, in 2010, in the United States, close to our home, there is an arsenal of treatments to throw at the sarcoma tumors, and that Carl is here and getting those treatments. Many others in the world would not be as fortunate.
Hang in there Carl! I am praying for you! And so are many others!
Thank you to all who are praying for Carl.
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