I had felt bad that I didn't update the blog in April, and now May is nearly over. So now I really feel pressured to post something. It's been a busy 2011, so I will give a relatively non-medical update of April, at least.
April started well. Carl was feeling fairly good. Carl was actually able to drive to work again on Friday, April 1, 2011. (No fooling) . He had been counting the days until he could drive again, and it was now six weeks after Carl's second neck surgery. The Dr's. gave him the go ahead.
On Saturday April 2, 2011 Carl and I got to see our very talented niece be Carlotta in the musical "Phantom of the Opera" at Marquette High School.
The photo below is from Sunday, April 3rd, when Carl, Miranda, and I went to a show at the Art Museum.
The children's spring break vacation from school started on Saturday, April 2 to Sunday, April 10, 2011. Starting Monday, April 4, 2011, Carl was happy to drive off to work and leave me at home with the children.
As spring break progressed, Carl's left knee and the area just below the knee started to bother him. By Thursday, April 7, 2011, Carl's left knee was painful enough that he had to start using crutches to walk. The children's spring break vacation continued, though, with Carl escaping to his work when he wasn't at something medical or recovering from something medical.
On Saturday, April 9, 2011 we 'left town' for the baptism of Cooper Schmidt, my niece's 1st baby, and the first grandchild in my family. We took the family picture at the beginning of this post before Cooper's baptism in Green Lake, Wisconsin.
Here is Carl with Cooper. Carl is now a Great Uncle, but we already knew that before Cooper was born.
After the baptism (the very next day, even), we started celebrating Miranda's 12th birthday. We celebrated Miranda's birthday several times, actually. (Her actual birthday is April 11)
On Wednesday April 13, 2011 Carl had a small surgery for a hernia repair.
On Thursday, April 14, 2011 we celebrated Tom's 17th Birthday.
On Sunday April 17, 2011 we celebrated my niece's birthday, and Tom's and Miranda' birthday again!
On Monday April 18, 2011 we finished our taxes.
Sunday April 24, 2011, Easter came, and we decorated Easter eggs and more.
We saw both side of the family on Easter - lunch with my relatives, dinner with Carl's relatives.
On Monday April 25, 2011, Carl's neck was swelling up.
On Friday, April 29, 2011 we went and watched a play at Homestead High school that Anthony was very active in. Anthony was the lighting stage crew manager, and had been working on this play extensively through out April.
Many other things went on in April 2011. Almost every weekday in April, Carl got a dose of radiation to the neck.
So, as I said before, April was very busy.
It's now the middle of April, and I am long overdue for an update.
Carl last got treatments from March 1-March 5, 2020. At that time he had inpatient chemotherapy. Then the Doctors suggested it might be a "good time for a break". Anthony and Carl had birthdays, on March 19 and 25 respectively. Easter (April 4) and Easter break for the children came and went from April 1th to April 11. Miranda turned 11 on April 11, 2010, and we went to Chicago for the weekend to celebrate her "Golden Birthday". School resumed for the children, and our oldest Tom turned 16 on April 14, 2010. On Friday we celebrated my nieces 16th birthday (She's 16 today, April 18th), and today we celebrated my father's 89th birthday, which is tomorrow, April 19th, 2010. [Deep breath here...]
I have pictures and photos from these events, and while I someday may post them, the idea of keeping this blog "chronological" at this point seems daunting. (I still haven't posted Carl's birthday photo yet, either. I'm not sure it's been down loaded from the camera!) I can't always play catch up, I'll just jump ahead.
Medically, Carl enjoyed a long break from the hospital. So the last month he has been healthy and active, able to eat salads and from salad bars, deli sandwiches and all sorts of other treats forbidden when the white blood cell counts may be low. He has been driving himself to work everyday. He's started to grow fuzzy hair. On April 8 he had to get his port "flushed", a procedure to clean out the port when it hasn't been used for a while so that protein deposits don't build up and block the tubes. On April 12, and April 14th test and procedures started for the next treatment phase, which will be radiation to the leg area for 15 days with concurrent chemotherapy. We have enjoyed a sort of respite from the cancer treatments, which will now start again with a vengeance.
Tomorrow, Monday, April 19, 2010, Carl will get a short chemotherapy dose, and then starting April 20, 2010 and for the next 15 successive weekdays Carl will be getting radiation doses to the leg to attempt to kill the tumor there. The chemotherapy drugs selected will interact with the radiation to maximize the effect of the radiation, as well as treat stray cancer cells. I so hope that Carl's cancer is miraculously sensitive to the radiation, and that the cancer cells die at a rate, and so completely, that the Doctors are astonished. Wouldn't it be great to astonish the Doctors with a miracle? We pray for this.
The Doctors don't rule out miracles. This is a step in a treatment series that will continue throughout 2010.
That idea I find a little exhausting. I find the weekend and day before treatments begin highly stressful. I want everyone to be having a great time, when I am still dealing with 6 personalities and (effectively) 4 teenagers [OK, so the children are 16, 14, 12 and 10. I exaggerate...]
I find it a little hard to be happy and sparkly, or even relaxed and enjoying the good moments. I want to celebrate, have the children have friends over, and keep everyone happy, because the treatment weeks get a little rough. And this three week radiation will be another new challenge, slightly different, with different possible side effects and dangers.
Carl, my amazing guy, has a great and remarkable calm as my stress levels start to jump... Good thing I married him!
I am finding it hard to word this blog post elegantly, or even well, so I guess I'll just send it off into blogland and get on to the next task. Thank you so much for your prayers, your thoughts and your support, the meals and treats. I will need them again in the weeks (and months) ahead.
Smile, God Loves You, and Peace.
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!
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!
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.
