2nd Chemotherapy Round

Carl completed 4 nights and 5 days of inpatient chemotherapy, Monday, Jan 18th, 2010 to Friday, Jan 22, 2010. Prayers have helped. I hope chemotherapy goes this smoothly each time.

Monday Jan 18, 2010 : Carl and I left around 7:00 AM to go to the Medical Complex. The children were home from school and were supposed to be sleeping, so we left them at home. But three of the children woke up enough to say 'bye. A good friend came over at 8:00 AM to feed the children breakfast and hang with them, until enough of them were up and dressed and in condition for her to transport the kids to R's Fantasy House for Children.

As for Carl and I, maybe someday I will outline this mostly boring day, but right now I don't want you to fall asleep. After appointments for blood work, X-rays, Doctor R, a dietitian, and Doctor C, Carl was admitted to the Froedtert hospital 4NT wing. (We privately refer to 4NT as "The Spa"). (Froedtert is pronounced like the two words 'fray dirt', which is no reflection on the hospital, which is clean and staffed with wonderful people. We saw nothing frayed during Carl's stay.)

The Chemotherapy drip was started on Monday at around 2:30 PM, and was then left going continuously until Friday, around 8:00 PM. I eventually left to go rescue Saint R from my children. [Oops, I mean pick up my children from Robin's House.]

Tuesday Jan 19, 2010 : Carl was doing great with his Chemo, and was making use of the recumbent exercise bike in the spa's family center, which had a nice view.

Wednesday Jan 20, 2010 : Carl was doing well with his Chemo, but was tired often. Then three of the four Grisa children came to visit him from 7:30 PM to 9:00 PM on a school night...

Thursday Jan 21, 2010 : Carl pretty much slept for 20 hours. This may have been the result his children visiting, or his chemotherapy, we aren't actually sure.

Friday Jan 22, 2010 : Carl was very tired, but determined to leave as scheduled. He declined an offer of staying an extra day at the spa, pretty much because he just felt like going home. At 8:00 PM we were leaving the hospital, and the very cool nursing staff behind.

Saturday Jan 23, 2010 : Carl had to return to the hospital for a scheduled shot of Neulasta (also know as Pegfilgrastim - see how close those words are?). Had he been dehydrated or had his heart been racing, etc., they would have given him IV fluids, but fortunately it was a relatively quick in - quick out visit to Cancer Center's Day Hospital. Carl pretty much rested for the rest of the day.

Sunday Jan 24, 2010 : Carl go to stay in his own house for 24 hours. Friends visited, and some of the church came to him since he didn't get to church. I thought Carl would be tired, but he was in good spirits and up and moving around from about 2:00 PM to 7:00 PM.

Monday Jan 25, 2010 : Carl slept in, and was going stir crazy staying in the house by about 2:30 PM. I took him on a small field trip. We will see what the rest of the week brings...

He has no more Doctor appointments until February. (OK, I know that is technically only days away, but I'm kind of glad the next appointment is in an entirely different month...)

Thank You so much to all who have said prayers, sent notes, called, visited, and helped us. We have had help with rides, hanging with our children, meals and more. Dawn Fuchs from our church has offered to help coordinate meals and rides, and has been a real blessing to our family.

Chemotherapy Round 1

So this is what the 1st round of chemotherapy (Mon-Dec 28, 2009, Tues-Dec 29, 2009, Wed-Dec 30, 2009 and Thurs-Dec 31, 2009 and Fri-Jan 1, 2010), was like for Carl.

8:00 AM appointment, Carl shows up, Stacey the friendly receptionist asks him his room preference (Chair or bed). Carl selects bed. She assigns him a room and nurse, (special requests should be made now). Stacey informs the nurse that patient Carl is here. The Nurse preps the room for the patient, checks the patients orders, and sets up. After a time period the nurse comes to take patient (Carl and entourage-wife, kids, etc.) back. The nurse weighs patient, and escorts patient to the room.

An IV (Intraveneous) line needs to be set up to get the medicines into the blood. This can be done with a needle in a vein or in a port. Many chemo patients (and Carl) has an port implanted under the skin.

The nurse needs to access the port to set up the IV. The skin over the port site is cleaned and a 90 degree angle bent needle is poked into the port. Needle entry can be felt - Carl usually winces. Some patients ice the skin over the port in advance to numb it. Carl doesn't do that - yet.

A syringe of Heparon is pushed into the IV. Carl can instantly taste a bad taste in his tongue. This means the needle is in the port, and the flow from the port into the vein near the heart is flowing forward.

Then the nurse attempts to suction blood from the body back into the IV line. This doesn't always happen right away. Sometimes proteins can end up lining the tube from the port to the vein, and forward flow works, but backward flow is prevented. The nurse will work though this- more flushes, chemicals to de-block the line, etc. If all else fails, an arm vein could be accessed, but the point of the port is to NOT bruise up the arm with IV's.

Chemotherapy patient can wear street clothes and walk around while getting the chemotherapy, pulling along the IV machine and fluids on a pole. The IV machine displays the time remaining on the current "infusion".

Chemotherapy for Round 1:

• Over 2 hours of time
  • Saline solution, 1400 mg.
• Over the next 15 minutes of time, Simultaneously:
  
  • Ondansetron 16 mg - Anti Nausea medication
  • Dexamethasone 20 mg - Anti Nausea medication
• After above, over 15 minutes of time
• Over the next 2 hours of time
  • Mesna 700 mg - this protects the kidneys linings from bleeding, which is a side effect from taking Ifosfamide.
• Over the next 2 hours of time
  • Ifosfamide, 3450 mg in 500 ml of saline solution.
• Over the next 2 hours of time
  • Saline solution, 1400 mg.
• Break????
• 4 hours after the last of the ifsofamide
  • Mesna 1400 mg - Mesna protects the kidneys linings from bleeding, which is a side effect from taking Ifosfamide.

Completing the use of the port for the day is a procedure as well, some patients choose to leave the needles in overnight. Carl elects not to.

The outpatient chemotherapy are has snacks like cereal, ensure milk shakes, fruit juices, and tins of Campbell soup. Carl is encouraged to drink lots of water. Each chemotherapy chair of bed is private via curtains or walls; and has a TV's able to watch DVD or Videos or multiple cable channels like Cartoon Network, National Geographic, etc.

The length of time a chemotherapy session is depends on the drugs and dosage being administered. Many chemotherapy sessions are just a couple of hours. Carl's first course had substantial doses of strong drugs, which meant that Carl had to be there from about 8:00 AM to 5:30 PM. We rarely left the hospital before 6:00 PM. Carl slept much of the time.

Carl prefers his milk shakes from McDonalds over the ensure shakes provided. Miranda and the other children are OK with both ensure and the McDonald's shakes. Carl also enjoys playing the Game of Life with Miranda.

Carl had his beautiful hair until Jan 16th, 2010.

The Calm before the Storm

Carl starts inpatient chemotherapy tomorrow, Monday, Jan 18th, 2010 for five days. (That means he stays overnight at the hospital.) Pray for him. I'm praying for eradication of the bad cells and decades of living...

To catch up (quickly) since the last blog update, Carl has completed 5 chemotherapy sessions which ended Jan 1, 2010. Carl has had 10 radiation treatments to the neck, which ended Jan 7th, 2010. Carl even went to work on Monday through Friday on Jan 4 to Jan 8th, in between Doctor appointments. He likes his job, and focusing on work keeps his mind off worrying about bad cells. He was tired, of course, but who isn't?

The week of January 11, 2009 to January 15, 2009 was surreal. Carl looked and felt healthy (full head of hair!), and we didn't have any Doctor appointments or treatments. He went to work basically full time. He was probably better rested then he has been in years, and he was exercising on a stationary bike which made him feel very good. (Can you get a runners high on a bicycle? Do you get runner's high faster when you have had chemotherapy recently?) Carl and I both thought that it seemed hard to believe he 'had cancer'.

A variety of individuals helped drive Carl to and from work, because although he could drive, we felt it would be better for his energy level and neck (and lane changes in the car) if he didn't drive when he didn't have to. The snowstorm on one of the first days that Carl was planning on driving in by himself was probably God's way of saying - Hey, don't overdo it! We ate great due to a variety of wonderful meals friends delivered. On Thursday, I finally got a family photo that had been a goal of mine.

Saturday came, and Monday is looming. Carl's hair started falling out slowly on Tuesday, and significantly by Friday. On Saturday I helped Carl cut it off and then shave the rest. We had a great evening with some of our oldest friends. The children and I are getting used to Carl's new look. I have not seen Carl with short hair in 25+ years. (Pictures will follow...)

But the impact of Carl with no hair reminds us frequently of cancer and treatments starting on Monday. Sunday involved church and some preparation for tomorrow, and now it is time to get a good nights sleep.

Keep us in your prayers. We pray for our friends and relatives when we pray for Carl, which is often.

Christmas Treats

We last left off December 22, 2009, the happy day where Carl got his port placed. Many of these fun new terms (ex. port) will be defined in later posts.

• 2009 Dec 23, Wednesday:
  • We woke up calm and relaxed, a plan (and port) in place. We got the children off to school.
  • Carl was showered and dressed, ready to go to work for a nearly full day.
    
  • We get a phone call. Would we like to meet with the Radiologist? (by the way, TODAY?)
    
  • 11:00 AM Meeting with the radiologist.
    
  • The thing in your neck concerns us... (what thing?) Remember the PET scan on December 18? The first Scan including the head? Guess what...
    
  • 1:00 PM Hi tech custom device to immobilize Carl's head and neck for radiation created (for photo see What Radiation looks like.)
    
  • CT simulation of radiation to neck area done.
  • I left Carl at Froedtert to collect the children from the last day of school for the year 2009.
    
  • 4:00 PM Carl got Radiation #1 (of 10) and was driven home by friend. (see What Radiation looks like)
  • The treat in treatments are starting, before Christmas even.
    
  • 4:50 PM I got a call from an anguished Anthony. He was hurt at wrestling practice.
  • 5:15 PM Carl home from Radiation #1.
    
  • 5:40-7:45 PM Mom and Anthony at the urgent care facility, X-ray shows a totally broken collar bone with the two pieces of bone not even close to touching.
    
  • 8:30 PM Pain medication prescription filled for Anthony and Carl.
    
  • Lots of Christmas snow coming down.
  • Children at home with Carl put up the Christmas ornaments on tree (front side only).
    
• 2009 Dec 24, Thursday:
  • The children slept in at home - no school.
  • 8:00 AM Carl got Radiation #2 (of 10) at Froedtert Hospital in Milwaukee, Wisconsin.
  • Carl got a neck brace. (You have to be kidding, right?) After Carl indicated he was unlikely to wear the neck brace the nurse told him that one of his vertebrae had some bone that was partially missing... You don't want to be paralyzed, do you? (answer, nope, and Carl doesn't want a sarcoma either.)
    
  • New song invented. "It's beginning to look a lot like cancer, Every-where they look..." [Sing to the familiar Christmas tune.]
  • We went home and collected the children. They enjoyed the non-stop screen time while we were gone very much.
  • Christmas Eve Party with family on my side of the family. Carl moved his head carefully and didn't wear the neck brace. He figured he would risk paralysis for one more day.
    
  • I went home and Carl and I went to bed. Carl slept with the neck brace on. I sighed, then got up and wrapped the presents I had and put them under the tree.
• 2009 Dec 25, Friday:
  
  • Santa left precisely 5 wrapped presents under our glowing (1200 lights!) tree. This does not compare favorably to the bounty from previous years. The children did NOT let us sleep in, and one present WAS open before all the family was assembled.
    
  • The children still had a good Christmas anyway (It's not like we don't have any toys, after all), and a Shopping Spree Day for Saturday was discussed.
    
  • Christmas Party with family on Carl's side of the family. Carl wore the neck brace. "Let the Freak show begin" Carl said as he walked in with his neck brace and cane. OK, this is not a great thing for Carl to say, and I probably should leave it out, but it's what he said, it's what he felt, and it's what I report here. Carl thinks he will blend more once his hair falls out.
    
• 2009 Dec 26, Saturday:
  
  • Shopping Spree day with family and Uncle Paul. We got the children pretty much whatever they wanted [but alas, no XBOX 360, Anthony's dearest wish. Had the progress reports of multiple children shown more (some?) progress...]
  • Lots of snow falling fast does not dissuade shoppers.
    
  • Parking was atrocious at the stores and malls. Even handicapped parking was very full (Carl got a temporary disabled parking sticker with the cane). Carl thinks they must be giving temporary disabled parking stickers out to anyone who asks. (OK, lots of the humor going around is kind of dark at the moment...)
    
• 2009 Dec 27, Sunday:
  
  • 11:00 AM Church service. (Carl, with neck brace and cane attracted some welcome attention - I love my church family! Thank you all!)
    
• 2009 Monday Dec 28, to Thursday Dec 31... :
  
  • 7:30 Carl got Radiation
    
  • 8:00 Carl got Chemotherapy
  • Carl did other tests, labs, appointments...

Christmas and December 2009 will be remembered like no other... Each day of Dec 28, Dec 29, Dec 30, and Dec 31 were their own mini adventures... But I am now tired and will post this post, and I will have covered 2009. Sort of.

Happy New Year to all. (This I mean sincerely).

This is the first year in more then 15 years that I have not had my Christmas cards made and sent out before the New Year started. Something else to do in January 2010. I must make the cards, and I must get the photo, before Carl's hair falls out. After all, I scrapbook my Christmas cards into my Christmas Album. For that reason alone, if none other, I intend to create the Christmas cards, and send them out! [Note from May, 2010: I never sent out Christmas cards for 2009]

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!