Weighty issues

As I mentioned in the previous post, on July 11, 2011 to July 14, 2011, Carl had his 16th course of Chemotherapy.  It was the hardest course of chemotherapy Carl had had to date.  


Carl's weight had been holding stable within a 10-15 pound range for the duration of his cancer since 2009.  He may have been at 160-165 pounds in 2009, and during chemotherapy he might drop up to 10 pounds, which he would then usually gain back most of the weight before the next round of chemo.  The surgeries (in 2011) really knocked Carl down, but he would gain most of the weight back.  But here is a recent history of weight.  All of the weights here were taken at the Doctors office on the Doctor's scales.


On May 16, 2011, Carl weighed 154 pounds.
On May 18, 2011, Carl weighed 153 pounds.
On May 23, 2011, Carl weighed 149 pounds.
On May 27, 2011, Carl weighed 146 pounds.
On June 9, 2011, Carl weighed 148 pounds.
On June 16, 2011, Carl weighed 158 pounds.
       JUNE 18, 2011 - Neck surgery
On July 7, 2011, Carl weighed 141 pounds.
On July 14, 2011, Carl weighed 142 pounds.
       JULY 11, 2011 to July 14, 2011 inpatient Chemotherapy 
On July 28, 2011, Carl weighed 131 pounds.  
       This is the lightest Carl was been since high school.  

On August 2, 2011, Carl weighed 137 pounds.

The July 2011 Chemotherapy Course really left Carl with little appetite and strength.  Of all the cancer months, this is the time Carl spent the most time in bed.  The next chemotherapy course was postponed, and then postponed again.  Carl has regained his appetite, a bit, and his energy, somewhat, and he is now back to work when he doesn't have doctor appointments.  Now it seems he may have chemotherapy on August 29, 2011.

In the meanwhile, Carl leg has been hurting more.  This has not helped things.  Carl uses crutches and/or the walker all the time.  An MRI on July 16, 2011 gave us the information for a procedure that might help (a cyto ablation followed by an injection of epoxy directly into the bone), but we only met the the doctor to talk about the MRI on Aug 2, 2011.  I wish now we had not allowed the 6 week delay, but Carl was really dragging and we dropped the ball.  We set up a procedure for August 26, 2011, the earliest time available with all the doctors vacations and what not.  Now the leg has gotten worse, and so we wait again, to find out more.  

At least the summer weather has been great for all this waiting around that Carl and I seem to be doing.  I hope your summer has been going well. 

9698 

Boy Scout trip and a swollen leg.

July flew by. Carl went to Garner Dam Boy Scout camp (in Wisconsin, North of Shawno) with Tom, Anthony and Nathan for 1 week - Leaving Sunday, July 25 and returning Saturday July 31, 2010. They survived mosquitoes and tornado warnings and the food prepared by the Boy Scouts. (Meat sometimes burnt, sometimes raw, always an adventure, I gather.) He had a great time in the great outdoors, sleeping with critters crawling under his tent. Carl returned with fuzzy gray hair and a leg swollen up like a watermelon. (OK, maybe it wasn't swollen up quite that big.)

On Monday, August 2, 2010 Carl went in for lab work and to get some chemotherapy. Because his leg was so swollen, they gave his leg an ultrasound to see if there was a blood clot in his leg. Good News, no blood clot. Bad news (or is this good news?) no chemotherapy, at least this week.

On Wednesday, August 4, 2010, a bunch of Doctors discussed Carl at Froedtert's "tumor board". The consensus after the meeting of the Doctors was to continue with chemotherapy.

[Here is a fun aside. The Doctors have three main options for treating cancer. In some cancer patient's terminology, Doctors can Slash, Burn or Poison the cancer. "Slashing" is surgery, "Burning" is radiation, and "poisoning" is chemotherapy. I believe Doctors rarely refer to these options with the cancer patient's slang.]

On Thursday, August 5, 2010, Carl went to the oncologist's PT (Physical Therapy) lymphatic system lady. (OK, I should find out her real title). She showed us how to wrap up Carl's leg to ease the swelling, and a massage that may help his lymphatic system.

So tomorrow, Monday, August 9, 2010, Carl will be getting chemotheraopy. He will be returning to the five days of inpatient chemotherapy, featuring the drugs Adriomycin & ifosomide.

July Vacation

July has been flying by at a fast pace.

Carl, the children and I went to Carl's Dad's cabin in Grass Lake, Michigan for a week over the 4th of July. We had a good time hanging out with relatives and cousins. We saw an airshow and a hot air balloon launch. We boated and played and fished. (OK, I did not fish, I just took pictures). We saw sights and ate out. We had a private tour of a haunted house. Carl did most of the driving (his choice), and we put over 1100 miles on the car.



We returned to Wisconsin, relaxed over the weekend, and attended my Godchild's graduation party (He was a salutatorian, I'm so proud).

Carl has been doing well and his leg has recovered well enough that this weekend, (July 10, 2010) Carl even went for a bike ride in Mequon on Saturday.

Vacation is over, tomorrow (Monday, July 12, 2010) is another chemotherapy day.

People have asked me how long will Carl be getting a chemotherapy course more or less every three weeks. I usually answer "through 2010". The Doctors don't say much on this point, basically the answer is "a long time".

A friend who had breast cancer (yes, that is a totally different type of cancer, I know) had chemotherapy every three weeks for two entire years. I didn't know they did chemotherapy that long for breast cancer. Carl's sarcoma is probably as bad or worse then her cancer was. (It is certainly rarer.)

Perhaps the Dr's. don't want to put us in a coma by telling us how long Carl's sarcoma will need to get chemotherapy. Either way, chemotherapy beats the alternative, and I no longer dread the "chemotherapy day", or get as stressed out before it, like I used to. I guess one can get used to almost anything. :-O

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.

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 :)

Journey's Start 2009

Here is a question I have been asked, when did this all start? (When did you find out Carl had cancer? How did you find out Carl had cancer? etc.)

Sometimes you have been on a Journey for a while, and you didn't even realize it.

• 1993 Carl rips leg muscle running the Dinosaur Dash in Milwaukee Wisconsin.
• 1993-2008 Carl wears a compression band on leg to keep swelling and pain down.
• 2009 summer Carl notices he's limping. Others notice too.
• 2009 Late November Carl finally goes to see his Doctor. (I made the appointment and told Carl to cancel it if he wasn't going to keep it.
  
• 2009 Early December Carl has an ultrasound done on his leg, the ultrasound result - have an MRI.
  
• 2009 Dec 08, Tuesday:
  • 10:30 AM Carl had an MRI on his leg. Result - not good. See a surgeon ASAP.
    
  • Snowstorm that night.
• 2009 Dec 09, Wednesday:
  • 1:30 PM Meeting with Surgeon
  • I think the bad weather helped us get in to see the surgeon this early, because patients had canceled due to weather (??).
  • 3:20 PM blood work
  • 3:30 PM Biopsy on leg.
  • Very cold weather continues...
• 2009 Dec 10, Thursday:
  • 10:00 Carl had a CAT Scan
  • We got this appointment due to a cancellation due to the bad weather.
• 2009 Dec 11, Friday:
  
  • 8:00 AM Carl had a bone scan.
  • We got this appointment due to a cancellation.
  • 1:00 PM Meeting with Surgeon
  • My journal has this note summarizing what I heard of what the Doctor said about Carl's health
  • "MAN U R SICK!"
• 2009 Dec 12, Saturday:
  
  • We went to Breakfast with Santa.
  • On the way home, Carl's neck starts to hurt.
• 2009 Dec 14, Monday:
  • 2:30 PM Meeting with Oncologist
  • Diagnosis: High grade Sarcoma with Epithelial Characteristics. Or something like that.
  • 4:45 PM Flu Shot and H1N1 shot
• 2009 Dec 15, Tuesday:
  
  • Carl went to the dentist for a tooth cleaning totally unrelated to his leg.
  • That night, Miranda and Anthony preformed in a GREAT band concert.
• 2009 Dec 16, Wednesday:
  • A cancer tumor board discussed Carl.
  • 8:00 AM Carl had an Electrocardiogram
  • 10:30 AM Meeting with Lung Surgeon
  • 12:30 PM Lab for Blood work
  • 1:30 PM Biopsy on a rib.
• 2009 Dec 17, Thursday:
  
  • Carl went to work, didn't see any Doctors, and broke out in a rash.
• 2009 Dec 18, Friday:
  • 11:00 AM Carl had a Pet Scan, the first scan head to toe.
  • 1:00 PM Meeting with Doctor. He said what is causing that rash?
    
  • Chemotherapy scheduled to start the Monday after Christmas.
  • And that weekend, Carl's Dad came in for a welcome visit.
• 2009 Dec 22, Tuesday:
  
  • 11:00 AM Carl had a Port put in, for chemotherapy.

Photo above is Carl's Dad visiting Dec 18-20, 2009.


Photo above is Carl's Dad, Carl and the 4 children Dec 18-20, 2009.

Which brings us closer to Christmas.

But wait - a couple of plot twists are developing soon, so I will leave the Christmas Holidays for another post.

We are looking forward to the "Treat" in Treatments!