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.

Saturday 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.

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.

Today, a Day like any other Day

Well, today pretty much sucked.

It's not really like Carl and I were looking forward to Carl's chemotherapy. I was just glad it wasn't going to be 5 days inpatient chemotherapy. I figured that one day is better then 100+ hours in the same small room, staring at a wall. But Carl has to go through it, get the needle sticks, taste the bad tastes, and feel all the weird sensations that a person feels when they are trying to poison lots of cells in your body. Carl is the person for whom it "sucks the most". I was trying to be pleasant, but perhaps I appeared too cheerful this Monday morning. Carl made cracks about me getting ready to go, and then was clearing out his car and trying to change the tires. (Literally, I believe this morning, Carl was planning on taking the snow tires off his car, No Lie.)

When you are mad at situations beyond your control [Ex. 1: You have cancer; Ex 2: Your children are not preforming academically the way you would like; Ex. 3: 60-100% of the people you live with are disorganized, including you; Ex. 4: You can't find your torque wrench], but bottling it up, why not be grumpy at the person who has been with you at all of your low and sucky times in the last 20+ years, and who is probably the cause of some of those times, and who you most associate with all of those low and sucky times anyway, because, well, she is always around. [Why won't she just GO AWAY. And when she does GO AWAY, things don't get better, and that's her fault to...] (She might be around during some of the better times as well, but that is INCIDENTAL.) (Accidental?)

I really feel that I am blameless today, and that Saint Carl was gunning for a fight. There can be no doubt that in our relationship, Carl is the more easygoing and giving person. Today, though, I was being calm and patient, (that's easy once the four children are off to school), Carl was trying to provoke me. And he got grumpier when I didn't let him. I probably did the worst sin of all - I tried to be pleasant because I FEEL BAD that Carl has to go through chemotherapy today.

Here is an example of Carl trying to make me irritable. When we finally leave the Cancer Center, Carl and I get in the car. Before I even back the car out, I put the clutch in, and Carl is like "Oh My God, I should drive home." Hey, like I TAUGHT Carl to drive stick shift, in MY CAR, 20+ years ago. And, like, if MOITRIN and BENEDRYL say don't operate heavy machinery, (a car) after 2 little pills, then I think, PERHAPS, full dosages of intravenous ondancetron, dexamethazone, and the fun little poison call GEMZAR might have similar restrictions.

Carl's chemotherapy appointment was scheduled for 11:30. When we arrived, they gave us a pager and told us that they wouldn't be calling us for at least 40 minutes. We headed down to the Froedtert cafeteria and ate lunch. Someone wonderful had given us a gift card to the lunchroom, which we have slowly been using. Lunch was actually ok, though we ate fast because of the pager. Sometime after 12:15 we are in the room.

I've mentioned before that Carl has a port for IV's, and that sometimes (frequently) the nurse will have a difficult time getting blood to draw back into the line, which they need to do before they can start the IV. So, of course, today there was no chance that we would get the blood to draw back, and the nurse did not seem to inspire us with confidence once she experienced this. The nurse used saline, then heparin, then more saline, and then finally got a TPA dose defrosted and used that to get the line cleared. Using TPA means a one hour wait. Carl's IV chemotherapy started at 1:50, when the scheduled time was 11:30. So, this means, the two hour chemo will now end after the children are out of school. Whatever. I make phone arrangements.

So eventually I get Carl home, and I get the kids home. But now I am getting a bit annoyed. So, when you are mad at situations beyond your control [Ex. 1: Your spouse has cancer; Ex 2: Your children are not preforming academically the way you would like; Ex. 3: 60-100% of the people you live with are disorganised, including you], but bottling it up, why not be grumpy at the children who have caused, and continue to cause some of your recent low and sucky times in the short span of their lifetime.

Then Tom goes for an unauthorized bike ride on the highway. Nathan and Mir and I go out to find Tom, because someone should. We can't split up because only I have a cell phone, Carl misplaced his, and he always shuts it off so you can't call it to find it. (And besides, I really don't want Nathan and Mir to go along the highway without me.) We find Tom, send him home, but now Mir and Nathan want a fun bikeride. The children stopped to play, and I was looping back, and they don't even notice that I take a spill on my bike, crashing in a muddy ditch. Carl mows the lawn in anger because he knows I won't think it's a great idea after chemo, and he is still trying to irritate me. The children have a huge water fight with the hose and drag hundreds of grass clippings, maple tree helicopters and water into the house. Then Carl keeps the kids up past their bedtime trying to find summer clothing that fits, even though I think he should go to sleep. Finally, at the end of the night, the kids throw the wet laundry down the laundry shoot mixed in with the dry laundry, so now that laundry could rot and mold and smell. (They are supposed to leave wet stuff in the bathtub, or better yet, hang it in the tub to dry 1st, before getting it into the laundry shoot.)

I don't make this stuff up. I am not that creative.

This will lead me to another post sometime, the beauty of the word "whatever."

Banquets, Confirmation, Chemotherapy

Well, it felt great NOT going to Froedtert for 2 days, Tuesday May 11 and Wednesday May 12, 2010; after going for 16 consecutive weekdays. It practically felt like normal family living, or a mini vacation even. :)

Thursday May 13, 2010, Carl went in for blood work and to meet with our very nice Oncologist. The next steps were determined - a pet scan and then chemotherapy.

Friday, May 14, 2010, Nathan had his 6th grade Medieval banquet, (which we attended in costume, just as we did in Anthony and Tom's 6th grade year).


Carl didn't shave for weeks so he could look medieval. (Thankfully, he did bathe, so he did not smell medieval.)

He went back to work after the banquet, and shaved. I didn't immediately notice that Carl had shaved, but as you can see, Carl is definitely no longer bald.


Over the weekend, we celebrated Anthony's confirmation at church on May 16, 2010.

Monday May 17, 2010, Carl went in for a pet scan. I haven't seen the results, but apparently the scan shows no metabolic activity in spots outside of the leg. That is a good result, it means the tumor cells are not trying to grow, (I think). I'll describe pet scans in another post.

We then had a busy week with the family : Miranda's band concert on Tuesday; Anthony's band concert on Thursday; Tom's first baseball practice of the year on Friday. Carl has been continuing to work, and he is feeling fine and keeps up with the rest of us. (Which can be a hectic pace towards the end of the school year.) Carl does go to bed much earlier, and gets more sleep, and we are working on eating healthier. (More in a different post.)

The plan now is for Carl to start a round of Chemotherapy on Monday, May 24, 2010.

Carl could resume the 5 day inpatient chemotherapy, using the ifosomide & adriomycin combination. However, since the weather is so wonderful, and the cells seem to be behaving, The Dr's are going to use a second string of chemotherapy drugs so that Carl won't have to stay overnight at the hospital. Someday in 2010 Carl will get more ifosomide & adriomycin; but we can "save" those treatments for later in the year.

Part of the reasoning is this: The body can only tolerate so much adriomycin. Basically, you can have about 6 doses of this wonderful drug, and then your heart says skip it and you die. OK, that's not exactly technical. The body seems to tolerate about 6 doses. After the 6th dose your chance of cardiac arrest is about 2%. If you go for a seventh dose, your chances of cardiac arrest is about 18%, so they generally try not to give you more then 6 doses. Then you have to look around for other drugs to use to poison the tumor. So far Carl has had 3 doses of adriomycin, and the tumor seems to be responding - which means the tumor appears to be stopping it's metabolic activity - and not growing. We could use up our doses of the big guns (the Adriomycin), while the weather is great, (getting these doses over summer, with inpatient chemo); and then go to second string drugs, or take the second string drugs now and Carl will be able to "participate" in summer.

I hope we are doing the right thing, I've prayed on it and it seems to be the reasonable route. Things seem to be going well, and I thank you for your continued prayers. We are both looking forward to a "light" chemotherapy schedule, instead of dreading an inpatient chemo week.

Enjoy the week and the wonderful weather, we hope to!