November 2011

November 2011 brought colder weather and some cold rainy days.  November was quieter then preceding months - for one thing Carl stopped going to work.  Despite the wheelchair for mobility, Carl's energy has continued to decline, and not working is one way to conserve his remaining energy. 

Carl and some of his co-workers

So some of Carl's coworkers came and visited Carl.  They told me that the music around the office has changed somewhat without Carl helping with the selections.  Not for the better, Carl is guessing.

Carl's nephew came into town with his first child - Carl's first great-niece Emily.  Carl's experience with 4 children had little Emily smiling in his arms. 

Carl, his sister, Emily and Emily's family

A highlight of November was going to our Church's "Great Getaway" retreat weekend in Green Lake Wisconsin from November 11 to November 13, 2011.  Crossroad Presbyterian Church has had an annual retreat in November for many years, and our family has enjoyed going.  (I think our family has gone at least four times.)  The retreat is just people from our church (and the speakers), and so the participants can end up getting to know each other very well.  For this weekend the sun came out and the weather was great.  Carl and I were really hoping we could go as a family, and we surprised many people when we did.  Carl was really tired after that weekend, of course.  

Dinner with adults at the Church retreat

Our Family at the Church Retreat

Thanksgiving Day was a laid back day with the family and wonderful food.  The children's Thanksgiving break was 6 days long, starting on Tuesday and going through Sunday.  We watched a lot of TV and it was kind of noisy at the house. 

Thanksgiving Dinner at our house

In spite of Carl's cancer, we feel we have so much to be thankful for.  But I guess I'll leave that for another post.  I hope you had a great Thanksgiving. 

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Incredible Support

Carl has been going through a lot, obviously.  One thing I have not really gone into on this blog is the incredible amount of help and support we have received from many sources.

Our church family, friends, relatives, Carl's coworkers, and even complete strangers have helped our family in many ways throughout 2010 and 2011.

Carl and his Pricing Analyst Co-workers.

People have helped our family by watching our children, transporting our children,transporting Carl, praying for Carl and our family, bringing us meals, visiting Carl at home and in the hospital, giving us treats and gift cards, helping us with yard work and home repair, fixing our cars, and more.

I want to say a big Thank You for all the support. 

I remember a story about Saint Patrick - were one of the most powerful ways of saying Thank You was to say "Thanks be to God";
so I say "Thanks be to God" to all of you.

In September 2011, Carl's co-workers held a golf tournament fund raiser, which I blogged about here.  I never wrote about another large fund raiser picnic that Carl's co-workers organized and held on June 3, 2011, and so today I wanted to rectify that.  Both events had many things in common, but both days stand out as days of exceptionally nice weather;   "God Blessed" Days.

Chris, Carl and Scott, the Pricing Analysts
(Pricing Analyst is Carl's Job title)

It was very odd to be half of the focus of the fund raiser like the Arandell folk held.  I remember trying to gear up to not cry at the picnic.  I never thought that I might someday be the recipient of such goodwill, assistance, charity?  It was an unfamiliar situation.  I don't know if I was too unemotional, if I was shaky, if I seemed too party like.  Suddenly you are at the center of attention, where people are giving generously of their time and money and support.  The Arrandell event was even more emotional - many of the people there were strangers to me, but good friends of Carl.  I had heard stories about some of these people over the years.  I wanted to make a good impression, and convey gratitude, remember people's names, and not cry.   

Usually I take pictures at an event, happy to enjoy things from behind a camera lens.  It didn't seem right to snap a lot of photos at a fund raiser for our family, so I only took a handful of shots at the end of the picnic.

I'm going to tell my children Carl flies kites at work.

Here are Carl and his co-workers, flying kites.

Chris, Carl and Scott, the Pricing Analysts

This photo makes me laugh. It reminds me of taking pictures of my children.  People goofing off and only one person is looking at the camera.

The money raised at the fund raiser picnic really helped my family financially and with medical bills.  The money raised at the golf outing was raised for my children's college education.  For both fund raisers, I want to say, "Thank You, and Thanks be to God".

I want to say Thank You as well to the people who spent a ton of time organizing both events.  I don't have a photo of you - but I really want to say THANK YOU for all the effort both events required.  I have volunteered for many things over the years and know how a small project grows and doesn't always fit seamlessly into a schedule the way you hoped it would.  Thanks again, and Thank you to everyone who has been helping my family, in any way, big or small.

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Happy New Year, Neck Surgery Next

Happy New Year, 2011!

Carl and I and the children ended 2010 as we have been ending the Year for over a decade now - welcoming in the new year with some college friends and our eight assorted children, all born within 5 years of each other. (I think Carl and I visited each child in the hospital when they were born.)


It was a good way to close out the decade - We have been getting together for New Years Eve with these friends every year since before the turn of the millenium. (Photo above from Dec 31, 2000.)

January ushered in cold weather and more pain in Carl's neck. Multiple Doctors reviewed Carl's case, and are now recommending that Carl has a surgery to de-bulk the tumor in his neck. They considered this surgery before (in April 2010), and decided not to operate, (and at the time we were glad!). Now that the neck is giving him more trouble, the plan is that Carl will have surgery on his neck near the end of January 2011. [Update: The Surgery was on January 24, 2011] (Keep Carl in your prayers, PLEASE!)


First a special Doctor will do a procedure called an angiogram a day or two before the surgery. They will do an angiogram with embolization. Embolization is kind of the opposite of an angioplasty - the Doctors will attempt to kill and destroy the blood vessels that are supplying the tumor. [Update: The angiogram with embolization was on January 21, 2011]


On surgery day a neck surgeon will carefully remove as much of the tumor in Carl's neck as he safely can, approximately 90-95%. The surgeon will not try to remove it all, there are important nerves, blood vessels and spine stuff he doesn't want to get too close to. (The neck is a pretty important part of the body.) The surgeon will also try to cauterize (kind of burn to a crisp?) the blood vessels that are looking like they might want to supply the tumor area. A downside of removing the tumor is that the surgeon will then have to fuse several of Carl's neck vertebrae (C1 to C4, for those curious). An upside of this fusing procedure is that Carl may (with luck) actually have more neck mobility then he currently has now. Carl is in enough pain that he really turns his head very little at the moment. Carl will hopefully stay in the hospital for only a couple of days, stabilize, and then go home to recover. He will not be able to drive for 6 weeks.

I was glad the doctors didn't recommend this procedure in April of 2010, but now I really want the days to pass quickly until the surgery is over and done with. Carl has not bounced back from the last chemotherapy (which ended Dec 30, 2010) like he has from previous chemotherapies. Carl's pain is barely controlled by the medication he is taking - daily Oxicodone, with Oxicontin and Tylenol for 'break through' pain, of which there is a lot. The pain drains him of a lot of energy. It's hard to watch someone in pain and be unable to help in any meaningful way. Carl has lost weight for the first time in a year. Through this month he has been dragging himself to and from work as well, and I don't know whether to encourage or discourage this. (He probably wouldn't take my suggestions, anyway.) He basically comes home and collapses, sleeping an incredible amount, leaving me to wonder if I should wake him up to encourage him to eat, or let him sleep. I don't know the answer. When you get married they don't give you a book that tells you what do do in situations like this. I actually pray that I am not messing it up too badly.

I'm glad we made it to this weekend, (Jan 15 and 16), where Carl can rest, eat, and rest more. Next week the children have off Monday and Friday, and the two in high school have "exam week", and then we will tackle the medical procedures. Hopefully all will go well.

May your 2011 be healthy.

Carl's Birthday

Thursday, March 25, 2010 was Carl's birthday. For Carl's birthday he got a premier preformance of "The Sneeches" from Miranda's School, Wilson Elementary School. Miranda was awesome as "Sneech #3", and all 180 children that participated in some way in the play did an amazing job.

A friend Debbie brought over Carl's dinner and a Birthday cake. I kind of felt guilty that she brought over dinner, (AND a very cool cake), but it was a wonderful family meal and a great party. It made Carl's birthday go a bit easier for the entire family (you know, it was a school night, everyone had homework, etc.) The dinner was especially fitting for Carl. We have an ongoing debate in the family of which is preferred - rice or noodles. (All but one child loves both, but there is that tiny preference thing... You know, which to make tonight when it is the 3rd night of the week when you are having one or the other...; Which would you rather have chili over - rice or noodles...) I am ok with noodles more frequently then rice, as are most of my children, and Carl is entirely in the rice camp. (Sometimes I suspect he might actually not care for noodles - Gasp!) Dinner that night was a glorious meat and sauce dish over a bed of RICE! (Everyone liked it and had seconds.)

Again - it must be noted, we like both rice and noodles. In fact, I got Carl a rice maker for a gift one year. At first he was skeptical - and didn't want to use it. But I had watched a gourmet show, and as the TV chef said - rice makers work great. 500 million Asians can't be wrong.

Carl has been going to work daily, for typically eight hours a day, every work day since his last chemo was over, starting on March 9, 2010. He likes going to work, and his desk job working at a computer at Arandall Corporation is mentally challenging and not physically taxing. I am now comfortable with the idea of Carl working everyday. Staying at home and facing the always present to do list around an older house can sometimes make you anxious, so go and enjoy work Carl!

Tuesday, March 30, 2010, (today, as I write this) we are going to meet with Carl's Doctor (The Radiation Dude) to discuss the next steps. (Probably radiation, how long, when...) Guess how I slept last night? Horribly. I tossed and turned, saw the alarm clocks red numbers glaring at several points throughout the night. I would say I don't remember sleeping, except I had a wild dream of a crazy storm along the lakefront and all these little boats in distress as everyone basically hunkered down, got soaked and took a beating. And I was taking children to some scheduled sports activity in the rain, and the location kept having to change because of the rain. So I kept having to drive past the boats, and running into buildings in the pouring rain. But no one was dying, or even getting hurt, so I guess that is a good sign? The dream seems easier then today and the month ahead, now that I am awake. After all, the eventually the (dream) storm will be over with. (???)

The storm and rain dream is not made up. It's my actual dream from last night. I have fairly vivid dreams multiple times a week, in color.

I let you know what the Doc's have in mind... Bye for now!

Sort of waiting, Post Chemo No. 4

Carl finished his forth round of Chemo on March 5, 2009.

Monday, March 8, 2010 Carl wanted to go to work, but some of his co-workers were recovering from a flu like 'thing', so he decided to stay home and we went to an eye doctor appointment instead. Now Carl needs glasses, too. Carl's talented co-worker drew one possible picture of Carl and his new look.

Tuesday, Wednesday, Thursday and Friday March 12, 2010 Carl went to work and drove as well.

On Tuesday, March 9, 2010, we went to Miranda's 5th grade vocal concert. This was our final singing concert at Wilson School for our children. Miranda is wearing the green dress. (Thank you Miranda!)

I estimate we attended about 20 such concerts at Wilson School. At six of these concerts we had a child in each grade that sang. (The concerts at Wilson school are concerts for two grades at a time) All of the concerts involved the talented and inspiring Mrs. K, the music teacher. She may be the only teacher (other then the art teacher?) that had, (and survived!) all of my children.

Grisa's can arrive early (with intense motivation), and for concerts I would try to arrive early enough to get a front row seat, that usually worked. Our neighbor Gretchen is next to Carl - Gretchen has always had a thing for bald guys ;)

Monday, Tuesday, Wednesday, Thursday and Friday March 15-March 19, 2010 Carl went to work and drove as well. Carl has been enjoying driving his firebird. I am enjoying him taking Miranda to band (and the middle schoolers when they miss/don't take the bus). We all are enjoying the fact that the snow is gone and spring seems to be near.

Friday, March 19, 2010 was Anthony's 14th birthday, and we had friends over for Anthony's Birthday party. What a sweet weekend. Anthony's birthday cake, 3 pies (1 FRENCH SILK, Carl's favorite), and tons of cookies and sweets flowed into the house. Appetite or not, NO ONE is loosing any weight here. The children enjoyed the sugar rush all weekend.

Recovering from Chemo Round No. 4 has been the hardest to Carl to date. Not that Carl can't work, or anything, but he really gets tired early, and needs to crash. At about 9:00 PM. Before my children go to bed. [A funny aside - On Monday, March 22, 2010, I kept Carl up until 10:00 PM watching the TV show Castle. Carl could not get up the next morning until he slept in an extra hour.] Carl can go during the day, but then his body stops until he gets basically 9 hours of sleep. That is totally OK, but it is a huge change from pre-chemo days, when 5 to 6 hours worked as well.

Carl's appetite hasn't jumped back, and food sort of doesn't taste right. In fact, on Friday March 20, 2010, I sort of wanted to take Carl in for blood work just to make sure he wasn't low in potassium or something weird but critical, but Carl talked me out of it, so we went and bought XBOX games with the children instead. Sort of responsible, don't you think?

And Carl is off to work this week again! (The week starting March 22, 2010.)

Under the schedule we were sort of on, Carl could have started an inpatient chemotherapy session this Monday, March 22, 1010. But the Doctors sort of indicated that Carl might want to take a break from chemo. (Well, yeah, but... I mean, of course, who wouldn't want a break from chemo, it's not exactly fun, but isn't it, like, sort of required?) Actually the Doctors suggested Carl could take a break after Round No. 3. But Carl and I decided if we get a choice of taking a break, after Round 4 might work better for our schedule. Then Carl wouldn't be getting Chemotherapy on his Birthday, March 25. (which is tomorrow, as I write this post.) Also, we could stretch things out "the break" so Carl wouldn't be recovering from chemotherapy over Easter, and perhaps we could take a quick vacation to Florida. The timing with Chemotherapy worked, but the finances and work schedule didn't - the fares are high the week after Easter, and co-workers already have the days off, and so... for the time being we sort of didn't book a Florida vacation.

March 29, 2010, we were supposed to meet with Carl's Doctor to discuss the next steps. But Carl sort of decided he wanted to figure out what was next a little sooner, especially since we are probably not taking a vacation over Easter. So today, our appointments have changed, and the next medical step has been "prescribed" for Carl. Carl will likely start concurrent radiation and chemotherapy on his leg, and next week we meet with the radiation Doctor to figure out what that means. How many days, when, etc.

Ugh. Maybe I will book a vacation. I sort of liked not having anything looming over us for a while.

P.S. People have asked if we are satisfied with our Doctors and the treatments we are getting. The answer is yes. (not even sort of!) I believe we are getting great care. I am frequently grateful that what I consider a state-of-the-art facility is only 30 minutes away. The Milwaukee Medical Complex has great technology, dedicated staff, and even reasonably good food ;) My understanding of the cancer centers around Wisconsin are that if you want to treat a sarcoma in Wisconsin, we are at the right place. Our insurance has been paying! If I had to choose a time period in history to get cancer, (and I couldn't choose the future), I would choose this day and age, this millenium, this decade, over any that have preceded. But in the end, I am not sleeping easier at night then I was in, say, November 2009.

Sarcoma cancers are rare, and the protocols for treatment are not nearly as defined as they are for a breast or prostate cancer, or melanoma, or lymphomas, or leukemias, etc. And while the outcomes for the aforementioned cancers are improving all the time, the treatments and decisions faced by the patients are not fun or easy. I feel Carl and I are in good hands. I hope we are in God's hands. But I also wish there was a sure-fire known "cure" for sarcomas, and all the other 600 cancers out there, and while Carl and I stumble our way through our cancer education, sometimes I might be sort of wishy-washy and unenthusiastic about our current journey.

There is one thing that I am totally sure of, though. I appreciate and am grateful for all the love and care, help and support, food and prayers that have been given to us in these last three months. Thank you very much!

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.

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...

Week 1 after Chemotherapy Round 2.

Tuesday Jan 26, 2010 : Carl went to work, I drove him...

Wednesday Jan 27, 2010 : Carl drove himself to and from work. It was very cold outside. And Happy Birthday to Nathan, who turned 12. With after school activities and religion that night, we decided to have Nathan's favorite meal on Thursday.

Thursday Jan 28, 2010 : Carl drove himself to and from work. It was very very cold outside. I basically think Carl is overdoing it, and he doesn't agree. He came home, and Carl found it very hard to warm up. We "celebrated" Nathan's birthday, and Carl collapsed into bed. At 9:50 PM, I called the Oncologist because Carl had a fever that was bouncing up and down every minute. The Oncologist said to come in the hospital for blood work, if the temperature didn't go down. So we tried all sorts of things (lots of hydration, no t-shirt, a bit of exercise, everything BUT Tylenol or Motrin. [Doc says not to take them, they would mask the symptoms]) Once the bouncing temperature displayed a lower number we quickly stopped measuring the temperature, went to bed, and postponed the middle of the night blood draw until the morning.

Friday Jan 29, 2010 : Carl slept in, and we visited the hospital in the morning. The first stop was the lab, where blood work was started. Carl's white blood cell count was 1.2. Anything below 4.0 is worrisome. Carl has reached his "nadir", a low point in white blood cell counts expected about 10 days after the 1st day of the Chemotherapy round. (Jan 18th chemo starts, 10 days later is Jan 18th.) This is the first time we hear the term nadir. Carl was advised to lay low, all weekend, and follow neutropenia guidelines for diet, etc. (Someday, a blog post on neutropenia. See all the new terminology we get to learn?). Carl's mature white blood cell count is 580. What do these numbers tell us? The heck if we know. These numbers mean much more to medical professionals then they mean to us. This will mean more to us someday, I get the feeling, but for now they are just numbers, points on a graph I could plot if I wanted to but do not know how to interpret. It means we will go home and have a nice lunch, and Carl will not drive himself to work today.

Saturday Jan 30, 2010 : While Carl "lays low", the children are a whirl of activity around us, with friend visits, birthday parties, sleep overs. Gifts and things need to be bought and wrapped. The children are "flying high", and the house seems out of balance.

Sunday Jan 31, 2010 : While Carl "lays low" some more, the children fly higher. I get children to church and back, friends help us with getting children places, and friends and relatives drop by.

Monday Feb 1, 2010 : Carl got up early, (at least sleep in, will ya?) and drove himself to work. He is feeling great. Tom stays home from school with a bad cold. Carl comes home somewhat late. I am feeling somewhat stressed. But I think I will leave my feelings for a later blog.