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Monday, March 22, 2010

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 Fri
day 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!

4 comments:

Michelle said...

Happy birthday to Carl and good morning Grisa family! You are definitely in God's hands. Our prayers continue to be with you all.

suelmayer said...

Happy Birthday, Carl!!! Love the drawing and the campfire cupcake. Jeanne, KNOW you are in God's hands and also know that we are all praying for you and your family!

Steve & Abby said...

Happy Happy Day !!! Carl, we hope you have a wild and fun day today! Woot Woot. Know that we pray for Carl and your family every day!

Nathania said...

Happy Birthday Carl! Thanks Jeanne for writing the blog. It's great to have the updates and the photos. Thinking about you all every day! Nathania