Neck Surgery No. 3

Today, (Wednesday, June 15, 2011), Carl is having a neck surgery to debulk / (remove?) the tumor there. (The neck tumor had grown back over the past 4 months without chemotherapy.)  Long procedures done on Monday and Tuesday have allowed us to get to this surgery today. Again, I would appreciate your prayers for a great outcome. Carl is a trooper.

Carl was wheeled in to surgery at 8:30 AM. at Froedtert Hospital, and there now as I am typing this.

I hope to update my blog with details later this week. 

I really believe the prayers over the last several days have been helpful.  Carl was so calm yesterday; and today, so far. 

Day 1 after Surgery

Tuesday, Jan 25, 2010 Carl was at Froedtert Hospital all day recovering from yesterday's surgery. Carl is exhausted, and it hurts him to move, even with the pain medications he is taking. Talking is 'draining'. Carl lies really still in bed after finding a "comfortable" position. Carl "graduated" from PT (Physical Therapy) this morning after he walked, climbed stairs, and got in and out of bed a couple of times for the physical therapist. Carl's neurological surgeon (spine surgeon) came in a talked to him for a few minutes, and reiterated that the surgery was very successful. Carl didn't want any phone calls or visits, although he did get to talk to his dad for a few minutes on the phone. He didn't watch TV, and mostly slept. Recover Carl!

A friend who has also had neck surgery told me that she remembers being given the benchmark that for each hour a person is out under a general anesthetic, it takes 1 week to recover, and that it is preferable to separate general anesthetic procedures by a week. I think avoiding a surgeon is probably preferable. I do not want to try and calculate how long Carl was out under general anesthetic.

Angiogram Day

(Please keep Carl in your prayers.)

Today Friday, Jan 20, 2011, is the day that Carl is having his Angiogram and procedure. And what a rough day the day has been already.

The children have no school today, just because -- I guess the reason given is that it is the end of the semester. (And Monday was a "holiday" as well.) So, ... I have to make arrangements for the children. This shouldn't be hard, but the children want to lounge around and play, not get up, shower, eat, etc. on any sort of (highly delayed) time schedule. I guess I thought that my children kind of understood that today, with their dad having a medical procedure, they might have some responsibilities beyond self gratification. The children kind of thought today would be "Saturday like" with the added bonus that there would be zero adult supervision. So, today I had children breaking all sorts of rules, well before the 'adults' (parents) even left. (The children don't consider that they have rules, they consider them "guidelines".) One rule/guideline - once you get up: Shower, get dressed, possibly eat breakfast, and if the Dog is barking for attention, put him outside. One "rule": Practise the piano before playing computer or "screen" games.


I think my children have only absolutes:

• If any sibling is breaking any sort of rule, then you should also.
• If the dog is barking to go outside, then someone else should put him outside.
• If the phone rings, (even if you are expecting a call) someone else should answer it.
• If mom starts to yell at ALL FOUR children to take a shower, you can gain bonus points by pushing others out of the way once you belatedly (1/2 hour later) decide it is time for you to comply with her request.
• If mom starts to "yell", then children should pre-emptively yell.
• If mom is yelling at any sibling, then other siblings should pre-emptively yell if she looks at them.
• When mom lowers her voice and says "Do it now", then mom is yelling. Pre-emptively yell. If you are feeling teen-like, swear as well.
• If an event is going to happen more then an hour in the future, you don't need to start getting ready.

I think I am probably being passive-aggressive here, but I hope that someday my children read this and think "That is SO UNFAIR". My Mom is not supposed to have any feelings other then a desire to make me ridiculously happy. My mom is not supposed to have any negative feelings at all. (Well, maybe at my siblings when they interfere with the world wide goal of me being ridiculously happy.) My mom is not supposed to require me to participate in any work required for the upkeep of the family, house, dog. (GOSH, isn't that what she is supposed to do? I mean, LIKE, isn't that her bleeping JOB?) 

I also hope that someday my children read this and think "That is SO UNFAIR". That is so unfair of my mom to use writing skills to vent her feelings. (We want writing to become obsolete, not used to remind our short term memories of negative things.) Writing is supposed to become obsolete, like hand-writing. Even the curriculum people know that. We keep telling mom that. OMG, DO I HAVE TO make MOM a power point? I'd TEXT her, but she won't even buy me a cell phone.) I know that the teachers have accepted that hand-writing is obsolete. The teachers don't even want to see our handwriting, because they can't read it. And neither can we. SO THERE.)


Well, I admit to my general audience here that I was stressed this morning, and my children did not come to my aid, but instead aggravated the situation. I know from personal experience that pre-emptive strikes do not work, and I know from personal experience that escalating hostilities are a natural human condition. 


Where was I. Oh yeah. Carl has a medical procedure today; children weren't cooperating; no-one wanted to walk the dog in the cold; dog poohed in the house; someone stepped in the pooh, no child wanted to find ground zero (Ground Zero here refers to the initial spot the dog poohed in.) Car stalled a couple of times; Car needed gas...

Oh, let's just fast forward to the hospital. 


The schedule we had been given was all geared for Monday's surgery. Not Friday's procedure. Where Friday's procedure is being done was not clear. Actually, since everything is computerized now, the computer printout had a column that says "Center". It has the Acronym "Radfec" Let's not spend any time helping the customer (patient) getting anything beyond a poor acronym. In fact, even the people filling out the computer form don't understand the acronym. And since the column heading 'center' doesn't really scream "Location", anyway, the data entry people will use the column 'Provider'. Perhaps that is the only field where they can type an entry. So, Provider will have "Ir 5 - FWC 2nd Fl". Yep, that will help our customer. No matter that it directly conflicts with Radfec.

You see, I have a four year engineering degree. (Not that I usually admit to it). I can speak (some) Acronym. So I know that ...

"Radfec" is probably Radiation or Radiology (two vastly different departments and locations) and fec is probably Froedtert East Clinic. (I know you readers recognized that right away.)

But everyone knows that Radiation wouldn't be located in Froedtert, it's in the connected building - the Cancer Center, so Rad can only be Radiology. Oh yeah, but not the X-Ray kind either, that is a TOTALLY different department, that's not really radiation anymore, that's, Oh never mind.

This then conflicts with "Ir 5 - FWC 2nd Fl" I believe Ir is Interventional Radiology. Well there, the customer (patient) should know right where that is. FWC (why the caps? Oh, punctuation, capitalization, all that stuff is obsolete or else it has a secret meaning that we won't bother you with...) FWC would (of course) be Froedtert West Clinic. And 2nd Fl - well second floor.

Well, F (Froedtert, for those not thinking acronym) is a big place, so the big people (administrators) labeled all the parts with East Clinics and West Clinics, even though it is a hospital, and an overnight hospital at that, so that there are a lot more then just clinics, but that's just... never mind. Anyway, (I think) Clinics are where you meet and greet your Dr, and Procedures are done elsewhere, (keep them doctors walking, it's part of our health care plan for them) but whatever....

I'm not conversant enough in acronym to know what the 5 means. I don't have advanced degrees. (Although I suspect it is the Ir room Carl is scheduled to have the procedure done in.)

Really, I should scan in our schedule. Oh well. We got lost, parked in the wrong area, walked back and forth, a lot, etc. Got Carl to where he should be. That's when we figured out that Friday's "procedure" is probably and almost bigger than Monday's surgery. Actually, an angiogram with an embolization procedure in the neck will require possibly more time than the surgery will. And Carl will need a general anesthetic, and ... But that can be for another post. Tah! (One of my friends uses Tah! instead of saying good bye...)

I hope all is going well with Carl's thing (angiogram with an embolization). They are hopefully about 2 hours into a four hour procedure.

Signed, Jeanne (Mistress of Laundry, Evil Mom).

School Starts...

Summer rushed by. In mid-August I registered the four children for the free public school (at great expense.) The rest of August raced past, and Wednesday, September 1, 2010 was the first day of school.

Tom is a sophmore a Homestead High School,
Anthony is a freshman at Homestead High School,
Nathan is in 7th grade at Steffen Middle School, and
Miranda is in 6th grade at Steffen Middle School.

On Tuesday, August 31, 2010, Carl started a five day cycle of inpatient chemotherapy at Froedtert Hospital. He will be getting chemotherapy featuring the drugs Adriomycin & ifosomide. This will be Carl's 5th cycle of chemotherapy with Adriomycin, and there is typically a limit of six cycles of Adriomycin.

We have gotten the good feedback that Carl's sarcoma is responding well to the Adriomycin. This is a good thing. Some sarcoma's don't respond to anything. The tumor in Carl's leg now seems to be "metabolically inactive", and has shrunk somewhat. I am hoping that it stays that way, and shrinks even more.

I don't have the time to describe what getting four children off to school with a husband in the hospital is like, or any emotional impact, but the start of school was surprisingly calm. Carl bought and got the children's school supplies organised, I registered the children and organised clothing and schedules, and the children seem more mature and organised.

We will see how the rest of the week goes.

February 2010 test results

On Monday, Feb 22, 2010, Carl had two MRI's and a CAT scan to see how the tumor is responding to the radiation and chemotherapy. The MRI's were on his leg and neck, and the CAT scan was on his chest.

Returning to the theme of tests in High School and College: In school, when you got your test back, you would understand the meaning. To make it easier, the tests could even be scored A, B, C, D or F. I guess I wouldn't want the medical community to score medical tests this way, but I can say that it might make understanding tests results easier.

Carl's CAT scan result is the easiest to understand. Previously (Dec 2009) Carl had two small nodules of (presumably) tumor in his lungs. Now the results state "Right upper lobe nodule has shrunken considerably. No other nodules are visible."; and "no new nodules".

The tumors in his leg and neck show signs of some shrinkage: As the report says - "Slight interval decrease in the size overall." (Specific, hey? Is that an A, B, C or what?)

I got a sort of insight on Sunday. The tests, and test results, aren't really for the patient. They are for the Doctors, who will now review the treatments to date and their effect on the tumor. The Doctors will then get down to the business of refining the treatment plan. This review will probably happen at a tumor board on Wednesday, March 3, 2010.

When Carl and I were presented with the facts of Carl's sarcoma in December 2009, the Doctors we saw suggested that Carl would be "in treatment" for all of 2010. "Treatment" would consist of radiation, chemotherapy, and "local control". Local control consists of surgeries, Gamma knife procedures, laser ablations, procedures for removing the tumor, etc.

Of course, if the chemotherapy worked wonders, and killed the tumor quickly, Carl might get lucky and not need "local control surgeries". Carl might be able to not require treatments for all of 2010 and beyond. The Doctors indicated that this was a possible, although not likely outcome. This is what I was praying for.

I was hoping for a miracle. I wanted the chemotherapy to be a quick fix and melt all of the tumors away like butter in a microwave. This may have happened (did happen?) to the small tumors in Carl's lung, which means that Carl has avoided one or two small "local control" surgeries to his lungs. (Yeah!) [Had the lung spots required surgery, the lung spots might have been removed on separate weeks to allow for better recovery. Lung surgery may mean (usually means?) that the lung will collapse and have to be re-inflated, which carries risks with it. Avoiding a lung surgery (or two) is good.]

So Carl has avoided 2 local control procedures, but ... ???

While it is still a possibility that the tumors will shrink and melt away, the current results might suggest that Carl's tolerance for the chemotherapy will run out BEFORE the remaining tumor is gone. That means longer treatments, more radiation, and more "local control". Treatments for all of 2010. Bummer.

For now, Carl is still tolerating chemotherapy well, and on Monday, March 1, 2010, he started Round No. 4 : Inpatient Chemotherapy at Froedtert Hospital on the 4th floor North Tower. He should get out on Friday, March 5, 2010. May this treatment wither away the tumor in his leg and neck.

Somehow, I felt a little more hopeful before the test results came out, even though the tests indicated nice results. I wanted miraculous results.

I guess the miracle is that, in 2010, in the United States, close to our home, there is an arsenal of treatments to throw at the sarcoma tumors, and that Carl is here and getting those treatments. Many others in the world would not be as fortunate.

Hang in there Carl! I am praying for you! And so are many others!

Thank you to all who are praying for Carl.

Chemotherapy Round 3 is over

Carl third Chemotherapy session went very well. He checked into Froedtert Hospital Monday, February 8, 2010, and came home Friday, February 12, 2010. As in Course 2, the first two days he felt pretty good. This time he started getting very tired on Wednesday, and was pretty "out of it" on Wednesday and Thursday. On Friday he felt fairly bad , and told me not to come and visit before I picked him up. (Carl describes it like feeling you are coming down with the flu, which I interpret as achy, tired, unwell, and not interested in food.)

The doctors send him home on Friday from inpatient chemo with a boatload of prescription medicines for nausea, pain, and more. (7 different prescriptions, I think, some crucial, some of optional, some of them to counteract side effects, etc.) On Saturday and Sunday Carl felt fairly bad whenever the prescriptions wore off, but otherwise rested and watched the Olympics with the children.

On Sunday morning I drove Carl back to Froedtert for a Neulasta shot. Neulasta is prescription drug, administered as an injection, that boosts white blood cells in the body. It is apparently very expensive. (Somewhere between $1000 to $7000, give or take a thousand, the nurse guessed.)

On Monday Carl rested and didn't go to work. He did leave the house to briefly go to Homestead High School to talk about Tom's High school schedule for Sophomore year.

It's Tuesday Feb 16, 2010. Carl went into work today. He let me drive him in, and agreed that this time around he will be taking it easier then last time, where he admits he might have overdone things a bit. We are back to a happy place where the anxiety is pushed off, at least for the time being, and we can pretend things are normal.

Thank you again, for all your support and prayers.

First Day of Chemo, Round 3.

Monday, Feb 8, 2010. Off to Froedtert once again, before 8:00 AM. (Thank you Dawn, for getting the children off to school.)

Carl's blood levels were good, he's healthy, so he was cleared for more Chemo. (If Carl's levels weren't good, he would have to wait until he was better. Then he could come back, so that chemotherapy could make him sick enough to get his blood levels unhealthily low again. This is what is done to kill cancer cells...)

Chemotherapy Round three started Monday afternoon in Room 6 of Froedtert's 4th Floor North Tower. We refer to 4NT as "The Spa". Tests, appointments, and admitting procedures took up the majority of the morning.

We had a family meal Monday night. Our independent panel of children randomly tested room service entrees and decided they would be happy to come back for more.

(I think that the food service may change room service delivery rules if we eat there too much, but the party was fun. Room service takes Visa.)
Party entertainment included watching TV.

Carl is having even more Chemotherapy then last time. There are four bags of chemotherapy drugs and 4 pumps going this time, versus 3 bags & pumps last time. The liquids are "infused" or delivered into the blood over 22 hours. Then Carl gets to take a shower, and the staff starts another 22 hour infusion. He should get 4 of these 22 hour infusions over the next 4 days, ending on Friday.

The Brown bag chemical is not embarrassed or shy. It is covered with a brown bag because it is light sensitive. Weird, huh?

Go Carl Go. God bless you and give you strength. I love you, and we wish you were here at home with us tonight.

I am grateful that we live in the time and place where we can get the medical care we need so that Carl can come home in better health - in the long run. Thank you to the medical staff who cares for Carl and others with cancer, and the decades of medical, scientific and engineering knowledge, improvement and innovation that has gone into getting cancer care to where it is today. Many lives have been saved because these professionals have studied hard, worked late into the night, not always taken the easy route, and been inspired.

Week 2 after Chemotherapy Round 2

I think January 2010 was one of the fastest months I have ever experienced. It flew by. They say time flies when your having fun, so I guess...

February 1 to February 5, 2010 : Carl drove to work and worked a full day every day this week. Most evenings he biked (on a stationary bike) for about 1/2 hour.

On Wednesday, February 3, 2010, after work, Carl attended his last ever (until grandchildren?) Elementary School Open House. Miranda, our youngest, is now in 5th grade at Wilson school, and we attended her school's open house. Since 1998, we have attended an Elementary School open house every year. (We haven't missed any, aren't we exciting!) Carl came home, and fell asleep until 9:00PM. Then he got up and ate dinner, and I think he even biked.

Carl is feeling great, (relatively speaking). He hasn't needed any pain pills for the last two weeks. I am less stressed then I was the previous week. I realized that I stress when I sense/think he is overdoing it, or is feverish, or whatever. He coughed a couple of times during dinner (Thursday) and I actually felt an adrenaline surge. My instant response was "What's wrong". Within 30 seconds I recovered (?), but the startled over-reaction clued me in that I have been "wound a little tight" recently.

On a different note...
Several years ago, a friend of mine had a husband who went through cancer. There are two things that come to mind now when I think about them.

First, her husband was in such bad shape that he was advised to go make a will when they released him from the hospital. They literally believed (at first) that he had only days to live. (I think the cancer had shut down his liver, his yellow eyes were the reason they went to the hospital) He pulled through that and they later gave him statistics that indicated he might make it for a while, but the long term prospects weren't good - recurrence, return of the cancer, was highly likely within 3-5 years. But they treated him with the "state of the science" medicine, and he has now survived 10+ years, way beyond his "expiration date". I think of him and other survivors I know, and how far medicine has progressed in the last decade, and I am greatly encouraged. [Note: Carl has not been given an "expiration date"]

The second thing that I think of was the reaction to her husband continuing to work. She thought he should slow down, spend more time with their young children, etc. (They were a dual income couple, money wasn't a huge issue). At the time I remember agreeing it was odd he would want to continue to work, basically full time. Now I understand a different perspective on the work issue, at least for our circumstances.

Carl wants to work and enjoys his job. He has a desk job, pricing contracts, which basically means he sits at a computer and does math all day. Physically the work poses little problem; mentally his job is challenging, detail oriented work. His alternative choice would be to sit at home and watch TV (which he doesn't do much); or stare at the walls of the house that he has lived in for the last 17+ years and think 'Woe is me'. We've been married 20+ years, I'm not sure how much exciting conversation we could pack into a given day before our eyes bug out of our heads. Maybe 2+ hours max? 1/2 of that rehashing our mistakes with the children?

I realize now, given that
(a) our children are older and in school, and
(b) post Christmas winter in Wisconsin is (possibly) boring, and
(c) thinking about cancer is not fun, and
(d) researching and reading about cancer on the Internet is worse

that Carl should (if he wants) go to work and gainfully occupy his brain. Carl should go to work if for no other reason then to distract him from wondering if the chemotherapy is killing the cancers cells faster then they are multiplying. And if he needs another reason, I guess earning money isn't a bad reason either.

So I guess I am somewhat at peace with Carl working. I guess I wish I knew in advance on which days it might be hazardous to his health for him to go into work. [Because cancer isn't hazardous enough.] But I guess my wishes (prayers) might better be used wishing (or praying) that the cancer cells die, dry up and blow away, or at least disappear. So I guess that that is what I will pray for, and I thank you for all your prayers and wishes.

P.S. When Carl gets a plenty of rest and is cheery, then I think he is one of the healthiest sick people I know.

P.P.S. Carl is scheduled to go in to the hospital on Monday, February 08, 2010. If his blood work indicates he is ready (healthy enough) to start another chemotherapy round, Carl will be admitted for a five day inpatient chemotherapy round (Round #3) from Monday Feb 08, 2010 through Friday Feb 12, 2010.
I will keep you posted...

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.