Where is the blog's beginning?
Click here to go to the first entry

Friday, June 25, 2010

Vacation, Fathers Day, and Chemo

Carl's outpatient chemotherapy on May 24 and June 1, 2010 left him feeling the worst he felt post chemo. His leg was in such sad shape that the chemotherapy scheduled for June 14, 2010 and June 21, 2010 was canceled - his leg needs time to heal. He couldn't bend his knee or exercise. Fortunately, as June progressed, Carl leg improved, and he get lots of rest. Carl went to work the week of June 14, and on Thursday, June 17, he went to Church for the first time in a while. Miranda's VBS (Vacation Bible School) sang at the service.

Crivitz Wisconsin up north

Friday, June 18, 2010, Carl's hair was falling out so fast that he asked me to quickly shave it before work. It was about an inch long, and now it is gone again. However, because the chemotherapy was canceled, we were able to visit a friend up North at her house on a lake near Crivitz - a mini vacation.

Saturday and Sunday, June 19-20, 2010, We were up North! It was beautiful and very restive. Carl slept a lot. Carl had a nice Father's Day.

Sunday night we had a father's day party with friends. Here is the whole family on Father's day.

Wednesday, June 23, 2010, Carl was finally able to bend his leg enough to exercise on a stationary bike at the YMCA. (We recently got a membership).

Thursday, June 24, 2010, Carl met with the Dr.; his leg had healed enough and he got a dose of Chemotherapy. The main drugs Carl got were Gemzar (also known as Gemcitabine) - and Taxotere, (generic name - Docetaxel). He last got this drug combination on June 1, and felt very unwell after it. We are hoping this time his reaction will be more tolerable. The oncologist reduced the dosage of Taxotere.

Friday, June 25, 2010 Carl went to work and got his Neulasta shot around 6:00 PM. This is the shortest time we have had to wait for the Newlasta shot, I guess we should bring all four children more often.

(Carl is hamming it up for the photo below - I promise... The nurse was wonderful.

Saturday, June 26, 2010: This was the Day that Mequon has their 4th of July celebration - (The Fun before the Forth, they call it.)
Carl felt OK for the parade and park visit, and went to sleep early while I went to the fireworks with two of the children.

Sunday, June 27, 2010: Carl got up after a lot of sleep and made it to church - It's very peaceful and easier to do when the four children are sleeping in.
Then Carl came home and took a nice long nap, woke up for several hours around dinner time, and felt well enough to eat. His leg feels much better, (he can bend it!). The current chmoetherapy makes him feel light headed and tired, but so far he is doing better then last time, (knock on wood). Tomorrow should be the worst day, if past trends are any indication.

Monday, June 14, 2010

Early and Mid June

I haven't blogged for a while. It's harder to get motivated to blog when things aren't going so great. Things could be a lot worse, though, so I guess I'll bring you up to date and hope that the next blog can be fun, witty and full of good news.

Carl had Chemotherapy (outpatient) on May 24, 2010, and June 1, 2010.

and Sunday, June 5-6, 2010, Carl pretty much laid in bed and crashed. He took pain pills, nausea pills, and more. The medicines pretty much only took an edge off feeling poorly. Carl didn't sleep well, and he wasn't interested in eating anything. I guess we could probably say Carl had a normal reaction to chemotherapy, but since it isn't normal for us it makes me very concerned. How do you tell the difference between a normal reaction to chemo and dying? I don't know, and neither does Carl. I guess if you are really doing badly, you get a temperature first. Carl's leg rash continued to get worse and hurt. Carl felt well enough to attend a boy scout meeting, but that was the extent of his energy for the day.

Monday, June 7, 2010, I think Carl dragged himself to work, and dragged himself home. Don't eat, try to sleep. The children are having their last week of school, with all that entails - special projects due, tests and exams, field trips and taking extra food to school, etc.

Tuesday, June 8, 2010, Carl didn't go into work. He was actually sleeping better, and not taking pain pills, but still no interest in eating. And it was cold and rainy out, and we had a power out. Tom was home from school, since it was exam week and Tom had no exams on Tuesday.

Wednesday, June 9, 2010, Carl finally had some energy. He went to work, even though his rash now actually had a charcoal gray looking area on it. Pretty. On a happy note, the whole family went to Anthony's 8th grade graduation ceremony Wednesday night. Carl's leg hurt enough that he was using his cane, which he hasn't used for months. (Carl says the pain pills don't do anything for his leg, so he doesn't take them.) Two children are now done with school for the summer (Tom and Anthony) and the other two have just one more day.

Thursday, June 10, 2010, Carl went to work, and called to tell me that the rash area behind his knee cracked open and was oozing clear blister like fluid. (Yes, I know - GROSS.) I had enough of worrying about his leg rash so I called the Dr. and dragged Carl down to the cancer center. (Carl went as a favor to me.) The various people said his leg was having radiation recall, or variocolitis[?] (something unpronounceable, starts with a v, and ends in itis), and the Oncologist said that Carl could cancel his next chemotherapy (Scheduled for June 14, 2010). Chemotherapy will wait until his leg heals up and doesn't look so disgusting. Go heal - and so Carl went back to work, and I collected Miranda from her last day at Elementary school. School's out for the summer!

I am now done with my one year of having four children in three schools. (Tom at Homestead High School, Anthony and Nathan at Steffen Middle School, and Miranda at Wilson Elementary School.) Miranda graduated from 5th grade, ending my 11th year of continuously having children in Wilson Elementary School. (From 2000 to 2010) Under other circumstances I think I would have felt nostalgic, but considering the past week; and all of 2010 to date, I am just thankful that the Elementary School "chapter" is over. I didn't even take any photos from the last day of school. (I think I will remember it anyway.) I am grateful for the great school and teachers my children have had there, it may well be the best school my children will ever have, but I am so glad the school is done.

Friday, June 11, 2010, Carl went to work, and the kids stayed home. Carl is feeling better and eating, and he will be able to rest a lot over the weekend. The children already want to do everything they want to do in the summer today, friends, shopping, biking, swimming, camping, etc. Three of the children and I did head to the airshow at the lakefront at 3:30.

Saturday & Sunday, June 12-13, 2010, Carl is doing better each day, his leg is still a mess, but we are getting some rest.

Monday, June 14, 2010, Carl to work, Vacation Bible School starts (for Miranda) and hanging at home on a cool, rainy, overcast day. Had Carl's leg been in better shape, I would be juggling the children and taking Carl in for Chemotherapy today.

I think I am kind of exhausted, worn out, tired. I think maybe we all are. It's kind of a weird way to start summer.

Friday, June 4, 2010

Update into June.

Monday, May 24th, 2010 Carl had outpatient chemotherapy at Froedtert's Cancer Center.

Carl felt well after the chemo, and he went to work on Tuesday, Wednesday and Thursday. The Dr. indicated that for many patients the full impact of the chemo doesn't occur until about 48 to 72 hours after the treatment. Well, this chemo had a "Thursday" impact. Carl came home from work on Thursday, May 27, 2010, laid down and fell asleep in his work clothes. He fell asleep from about 5:30 PM until later on Friday morning. I tried to encourage him to drink water at around 10:00 PM Thursday, or even change into PJ's, but he wasn't interested.

Friday, May 28, 2010, Carl felt good enough that he wanted to go to work, (he was at least well rested!), so he did. The children had a half day of school, so he probably wouldn't have had a restful afternoon, anyway. The weekend came, children went here and there (Tom to baseball, the other 3 to a Nerf game at the church, etc.)

On Saturday May 29, 2010, WE ALL SLEPT IN! (Yeah!) A quiet Saturday Morning! Carl was feeling well and he made a pancakes for brunch around noon. Saturday afternoon, Carl and Nathan, Miranda and I went to the Family Kite Festival held at the Milwaukee Lakefront Veterans Park. I rounded up some kites we've had for years, and we went and flew them. We ended Saturday with a dinner at Beni Hana's restaurant to celebrate our upcoming wedding anniversary. (Tom and Anthony wanted to stay home, so we let them.)

Sunday May 30, 2010, we had a rare second day of sleeping in. The kite festival was so fun Saturday that we decided to go again on Sunday, this time with all of the children. The weather was windy and warm, perfect for kite flying. We had great weather this weekend! All of the children enjoyed the kite festival and milk shakes and a picnic at the lakefront. Sunday night two children went to sleepovers, and one child had a friend sleep over in a tent, etc. The mad desire of the children to start summer now before school is out was probably not the smartest thing we could have agreed to, but things fared well and the children had a good time. (I didn't get much sleep, though. A storm on Monday early in the AM woke me up worried about the kids in tents scattered across Mequon.)

Monday May 31, 2010, we had a Memorial Day cookout with relatives, and Tuesday rolled around.

Carl's chemotherapy sessions this round consist of Chemotherapy on Day 1, (May 24) and then chemotherapy on Day 8 (a week later). Because of the holiday, Carl went in for chemo on Day 9 June 1. So, on Tuesday June 1, 2010 we got the children off to school and headed to the Cancer center day hospital.

Carl had blood work done first, at the Cancer Center Lab, 2nd floor, somewhere before 9:00 AM. (We had them access Carl's port there, so that there wouldn't be a hour delay up in the day hospital). The blood work results are needed before you start chemotherapy, and the tests take a minimum of one hour. Once you check in at the Day Hospital reception desk, they wait for the blood results, wait for approval from the Docs of the blood results, and then begin the process of "pulling" your medicines from the pharmacy. This means that there is another wait, especially since some of the medicines have to be defrosted. You wait until the medicines are available, a nurse is available, and the room is available. Once you get the room and drugs, the chemo takes about 3 hours and we were out before 3:00 PM Tuesday afternoon.

Then we came home, and gathered the children and ran them around to all the places they needed to go. Piano, picnics, after school activities. It sounds busy but it sure beat Carl doing a week of inpatient chemo starting May 24, 2010.

Wednesday, June 2, 2010, Carl felt well and went to work. Then I took him to the Day hospital for a shot of Neulasta. Weekday Neulasta shots are different then weekend ones. On weekdays, you have to do the waiting routine for the pharmacy. The injection itself, (into the muscle) is really quick - the nurses don't even have to find a vein. Carl wants to do the shot himself next time, to save time. If only.

Thursday, June 3, 2010, Carl went in to work. He was getting quite tired Thursday night, so he agreed (reluctantly) to let me drive him to work on Friday.

Friday, June 4, 2010, I drove Carl to work, and later we had a nice lunch together. The chemotherapy drugs were affecting Carl's taste buds, but he ate with a good appetite (to shore up energy, he said.) He finished up his day at work, but when I picked him up Friday after work Carl was really beginning to flag. THANK GOODNESS the weekend is here. Carl went straight to bed, but within an hour he agreed to take a pain pill, and later he took some Motrin. One of the side effect of Neulasta is that is can make your bones ache. Carl said his bones ache, his fingers and toes and jaw aches. As far as I know, this is the first time the Neulasta shot had this kind of impact, but then again, it could also be the new chemo drugs he got on Tuesday. Oh well, every day is an adventure....

On another note, remember when we were joking that we weren't sure if the radiation machine was turned on for Carl's leg radiation? Well, the radiation continues to be active for weeks after radiation is over, and Carl now has quite the nasty looking rash, a side effect of radiation, along the path that the radiation beam took. It hurts him were his knee bends, so that is now something else to wonder about.

We are trying to say some "healing prayers" that various friends gave us. I think maybe I'll share some of them soon.