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Monday, May 24, 2010

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."

Thursday, May 20, 2010

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).
Mequon Steffen Middle School Medieval Banquet 2010

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!

Tuesday, May 11, 2010

Leg Radiation is over.

Yesterday, Monday, May 10, 2010 was Carl's last day of radiation to his left leg. He got his first treatment of 15 on Tuesday April 20. Today is the first weekday in a long time that Carl has not gone into Froedtert. Yeah!

Here are some photos from leg radiation. They gave Carl a dot tattoo, and taped some markers on his leg with some very good adhesive. (Click on any image to see it larger.)

The machine above is the machine they use for radiation with a CT simulation. The circular part will do a CT simulation to check that the right area is getting zapped. Most days the radiation treatment was done on a machine that looks like the one in my post "What Radiation looks like."

Here is the form they custom made to hold Carl's leg in place for each radiation treatment.

This photo shows the path that the radiation machine followed. The area getting radiation was quite large, and the dose was high, which was one reason I was worried about possible side-effects. But radiation has gone very well, with almost no side effects as far as I can tell. I even joked yesterday to Carl, maybe we went through this entire procedure for 15 days and the machine went through the motions, but they forgot to turn the beam on.

Possible side effects ranging from sun-burned like skin, swelling, significant pain, etc. seemed to not happen. Carl is of course tired often, and sleeps way more then he ever used to, but he isn't complaining of major fatigue like I thought might happen. What a relief. I will thank God and all of the many prayers for this.

Yesterday was one of the first days that Carl said he could feel an impact on his leg. I encouraged him to take a pain pill, but he didn't. It didn't hurt, per se, according to Carl.)

The radiation will continue to damage the tumor cells for several more weeks. The odds that all the tumor cells in the leg will be killed are way under 20% (my number, not the Doctors), but I am hoping anyway. More rounds of chemotherapy will be starting within the next month, but for now we get a small break :)