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!
Carl completed his 4th round of chemotherapy (third round of inpatient Chemotherapy) on Friday, March 5, 2010. He was in the Froedtert Hospital continuously from Monday, March 1, 2010 through Friday.
Carl and I think he is tolerating the chemotherapy very well, although Carl said Thursday and Friday were really bad. I tried to get him to define it, and he said that Thursday alone felt like 40 hours of having the flu. The bed is always moving and he thinks he was awake almost every 2 hours.
Here is a photo of Carl on Thursday. On Thursday, he can hardly open his eyes. It was a hugely busy week for the children and me, and only Miranda got a chance to visit Carl in the Hospital, and only on Thursday. (Visiting earlier in the week is preferred.) The other three children wanted to stay home. I'm not sure what to think about that, but Miranda and I had a nice visit.
The photo below shows what Carl and Miranda think of chemotherapy. But we don't hate the chemo, oh no. Hate the cancer, love the treatments. Or at least tolerate them. Technology and prayers will keep Carl alive.
So this is what the inpatient rounds of chemotherapy infusions are like (approximately- don't go using this as a recipe for in-home care) for treating Carl's sarcoma (Mon-Friday Jan 18-22, 2010; Mon-Friday Feb 8-12, 2010; Mon-Friday March 1-5, 2010).
Chemotherapy for Round 2, 3, and 4:
- Over 2 hours of time, Simultaneously
- Saline solution, 1400 mg.
- Ondansetron 16 mg - Anti Nausea medication
- Dexamethasone 20 mg - Anti Nausea medication
- Over the next 22 hours of time
- Mesna 700 mg - this protects the kidneys linings from bleeding, which is a side effect from taking Ifosfamide.
- Ifosfamide, 3800 mg in 500 ml of saline solution.
- Adriomycin, 34 mg in 500 ml of saline solution. This is the heavy hitting drug, and the main difference from the outpatient chemotherapy.
- When those bags are empty, a saline flush of the IV ports, followed by heparin, and then Carl is disconnected so that he can take a shower. Once the shower is over, he is connected up again, and the next 22 hours infusion starts. This is done 4 times in all.
- After 4 days, Over the last 6 hours of time
- Saline solution, 1400 mg.
- Mesna 1400 mg - Mesna protects the kidneys linings from bleeding, which is a side effect from taking Ifosfamide.
- When those last bags are empty, a saline flush of the IV ports, followed by heparin, and then Carl is disconnected. And he can go home. Yeah. Tired.
Most days in the hospital, Carl took about seven oral drugs a day as well. More fun.
24 hours after the end of the in-patient chemotherapy, on either Saturday or Sunday, Carl has to go back to the Medical complex, this time the Cancer Center's 3rd floor Day hospital, for the Neulasta shot.
This is a picture of the Neulasta (also known as pegfilgrastin) injection. The instructions say "do not shake tube". So now I wonder, what happens if you shake the tube? Will it blow up? Or just not work? Whatever. Don't shake it. We want it to do whatever it is that it does.
(Dr. Seuss could say it better.)
[Neulasta promotes the white blood cell count, since the chemotherapy just wiped out all the white blood cells as a side effect, and white blood cells are kind of nice to have around.]
And finally, here is Carl walking out of the 3rd floor Cancer Center Day Hospital. Maybe someday I will tell you a funny story about this picture.
The Cancer Center is a beautiful facility that just opened in May 15, 2008. (I think the Cancer Center is officially called The Froedtert and Medical College of Wisconsin Clinical Cancer Center, [that's 10 words...] I've also seen it referred to as the MCW Clinical Cancer Center - much more catchy.) The titles leave me wondering: just what does the work "Clinical" add to the name, besides three syllables, I mean. A warm and fuzzy feeling? Whatever. Beautiful building, $95 million dollars of technology, and Carl can't wait to leave.
P.S. The MCW acronym is frequently referred to as M-COW. Very Wisconsin like, don't you think?
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.
Carl finished his forth round of Chemo on March 5, 2009.
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?
