October 2011 update

October 2011 seems to have come and gone very quickly.  One of the highlights in October for our family was seeing Anthony Grisa, our sophomore, in the play play "The Lion, the Witch, and the Wardrobe" put on by Homestead High School. Carl and the family went to all three performances. 

Carl and the kids (and my sister Roseann) at the show

In the play "The Lion, the Witch, and the Wardrobe" Anthony was a monster in the witches army.  Anthony has never survived the fall plays he has been in.  Anthony "died" in this play (once), and as a Freshman last year in 2010, Anthony "died" three times in the Homestead play "The Odyssey".   

Other October highlights were the Boys Scout chili cook-off (October 11, 2011), a dinner for a friend from Italy at my brother's house, (October 16, 2011), and Miranda's Cross Country Banquet (October 17, 2011), and eating out with friends. 

Our family of six at Francesca's dinner

Carl's started working on a rocket kit at home, his most ambitious rocket kit to date. (Carl has had a lifelong hobby of making rockets and launching them.)  The kit Carl is working on now is for show only, he doesn't plan on launching it.

Carl working on his Saturn 5 Rocket Kit

Carl went to work at Arrandell many days in October, and had a Pet Scan and MRI's, but no Chemotherapy.  The oncologist decided that the chemotherapy was only making Carl sick.  Carl started using a wheel chair in October, and we learned just how surprisingly unsuited our house was for a wheelchair.  For example, the smallest size wheel chair doesn't really fit trough the standard sized door into our bathroom, and turning in the hall is very difficult. 


Next post - November... 
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Awesome Technology

When it comes to cancer care in 2011, in the United States, here in Wisconsin, the engineer and photographer in me is grateful and proud of the available digital diagnostic technology. The technology is improving exponentially.

Like the expansion of the Internet and the digital camera, diagnostic imaging is improving cancer detection, monitoring, and care. I don't like the fact that Carl has cancer, but if you have to get cancer, (and you can't delay getting cancer into the future), now is the time to get it over any other period in time, any other millennium, century or year. The 'technology', drugs, and care is improving. Teams of engineers, scientists, technicians and doctors have created the technology I am going attempt to show you below.

Don't let the fact that this technology is cool make you think I am in any way happy that my husband has cancer. The pep talk above does not make it any easier for me to use photo shop to try to document this tumor. I am doing this (originally) for my children; also my spouse, our relatives and friends; and others who may stumble across this post trying to understand cancer. I do not like spending time trying to make the images understandable. But I think I can use my time to help some people understand more about cancer, or Carl's cancer, where ever their interest might lie.

Below are some MRI images that show the tumor in Carl's neck as of Jan 5, 2011. MRI stands for Magnetic Resonance Imaging. See Wikipedia for technological information on MRI's. Basically, MRI's use a large machine, a lot of physics and a lot of engineering to take multiple cross section photos of a part of the body, in this case Carl's neck.

If you can't see how Figure 1 or Figure 2 are images of a view of a neck, see Figure 3 and 4 below for some added 'visual' information which may help you to be able to better understand the MRI's.

Figure 1 is a MRI of a sarcoma in Carl's neck as of Jan 5, 2011. This is a view as the doctor or technician can see it on their computer screen. On the computer, the doctor can manipulate settings like contrast.



Figure 2 is a MRI of a sarcoma in Carl's neck as of Jan 5, 2011 with different settings, as the doctor or technician can see it on their computer screen. Notice how the neck vertebrae (the bones) stand out differently then in Figure 1 above. In Figure 1 the vertebrae (bones) are gray, in Figure 2 the bones are dark and stand out more. The tumor is more visible in Figure 2 when the bones are dark.



Figure 3 is Figure 2 with some added 'visual' information. I took the Figure 2 above and in photoshop I added colors and labels, and drew a childish outline to help you orient the placement of the head, which hopefully helps you better understand the MRI. Figure 3 is NOT what the doctors see on their computer screens.




Figure 4 is Figure 2 with some added 'visual' information. It is my first attempt at showing what parts are what. I took the Figure 2 above and in photo shop I added labels, and drew a childish outline to help you orient the placement of the head. Figure 4 is NOT what the doctors see on their computer screens.



MRI's are good for showing tissues, and differences in tissues. Carl also gets CAT scans. CAT scans are good at showing bone and structures like veins. I hope to show you CAT scans on a different future post. Carl also gets some X-Rays, which are good for showing bones, although differently then in a CAT scan. The combination of MRI's and CAT scans give doctors knowledge (and a visual picture) of things inside the body that used to be able to only be seen once a surgeon cut the body open. Now, the doctors and surgeons learn much before any cuts are made.

My children find these photos interesting for several seconds, and then at some point the information creeps them out and they need to walk away. It is not just a screen shot, it is a tumor that once was in their dad. (Surgery removed almost all of the tumor in Carl's neck on Monday Jan 24, 2011.) I am telling you about my 11-16 year old children's responses so that you may be aware of and accept your own feelings. I find it easiest to view these images when I detach them from being my husband's neck images. (It is easier to view them 'clinically'.)

I waited months to post these images. Maybe you will understand why. Whatever.

The next blog post will talk about Carl's MRI more specifically.

Click on any images to see it larger (and less blurry.)

Neck Surgery Update - Try Again

Today is Saturday, February 12, 2011, and I am finally writing to bring this blog up to date. The last chaotic jumble of posts can be referred to or ignored, but I'll try to recap here.

Carl's Angiogram with embolization procedure done at Froedtert on Friday, Jan 21, 2011. It was a long day and a long procedure that attempted to kill off blood supply to the tumor in his neck, and the Doctors felt it went well. Carl remained in the hospital through the weekend, and on Monday, Jan 24, 2011 Carl had a surgery to de-bulk the tumor in his neck and to stabilize his neck. Monday was a long day and a long procedure, and the Doctors felt it went well. Carl stayed in the hospital a few more days and came home from the hospital late Wednesday, January 26, 2010.

Carl has been mostly staying at home and trying to recover from the surgery. He has been in a lot of pain at times, and takes a lot of pain medication. Carl takes 60mg of Oxicontin, (a long acting pain pill) twice a day, and he takes 10 mg of Oxicodone between these doses for break through pain. He takes a version of Valium to relax the muscles, up to four times a day.

Carl didn't have to return to the Medical complex until Monday February 7, 2011, when he had three appointments: 9:00AM with the Oncologist, 10:20AM with the Radiation Doctor, and 11:30AM with the wound check people. The wound check lady removed the stitches in the back of Carl's neck. The meetings with the Doctors were surprisingly unenlightening. (A friend once told me that with cancer you have to remember that every Dr. meeting is not going to answer all your questions, or even tell you a whole lot. There is no great answer at the next appointment.)

On Tuesday, February 8, 2011, Carl went to work for about four hours. He felt good about getting out of the house and going to work. (I drove him both ways. Carl won't be able to drive for weeks)

On Wednesday, February 9, 2011, Carl went to work in the morning, and then I drove him to a 1:10PM CT simulation appointment in radiation oncology.

On Thursday, February 10, 2011, Carl had a 9:00 AM MRI appointment in radiation oncology. Carl's pain, usually bad, was even worse today. It was wincingly bad, and so while Carl got his MRI I tried to get appointments to address the pain. The Oncologist could see him at 12:30 that day, but recommended we contact the surgeon. At around 10:00 AM I call the surgeon, and they made an appointment for Carl to see them at 12:00 noon the same day. We were in the surgeon's office at noon, and the surgeon reviewed the mornings MRI (which were taken from angles appropriate for Radiation planning, not the angle the surgeon was used to). The Surgeon then ordered an X-ray which Carl had 20 minutes later. At 12:40 we were back in the Surgeon's office. He studied the X-ray and indicated that the mechanical parts placed in Carl's neck were not in the right position, a plate had slipped and a screw was out of position. He said we should have that fixed in surgery on Monday, was that OK? Carl just kind of stared at the guy numbly. The surgeon was good. He said let's schedule the surgery time to hold the time slot and you can decide later whether or not to do the surgery. I said, Carl, your going to go along with this, right? (and probably some more things...) and Carl agreed he had no real choice. (We could edit that to "Carl agreed"... but I am not sure either edit defines the real moment)

So... Carl will once again undergo neck surgery, this time on Monday, February 14, 2011, Valentines Day. Sigh....

The rest of Thursday afternoon included a pre-op appointment and expediting a CAT scan through both insurance and the hospital, and we were home by 4:00PM. Carl went home in pain, (not really numb, was he?) and so both Carl and I will just keep going.

Carl is like a exotic sports car - He's finicky. He needs a custom tune-up.

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.

It's Time for Testing

It's finally time for testing.
Next week Monday (if his blood work says it's ok...), Carl has two MRI's and a CAT scan scheduled to see how the tumor is responding to the radiation and chemotherapy. (Carl says they are going to test him to see if he learned anything yet.)

I think back to tests in High School and College. You could study and prepare for tests, and therefore control the outcome. Here, when the outcome is critical, we can't even influence the result. We can pray, (and many, many prayers are being said and have been said), and we can hope.

And then I feel I shouldn't need to hope, prayer should be enough. I worry that I am undoing the results of prayer by wondering if the praying is "working".

(in Mark 9:23 Jesus says "... Everything is possible for him who believes." from Mark 9:24 "the boy's father exclaimed, I do believe; help me overcome my unbelief!")

Prayer has helped me in life, particularly in recent years. (OK, I'm not sure I really prayed with any expectations or hopes as a child, although being raised Catholic meant you prayed nearly daily, at meals and at night, etc.) I believe in the power of prayer. I have "experimented" with prayer and been amazed, (startled?) by the (bizarre?) "coincidences" that have resulted. Coincidences? NOT. But praying away cancer seems so much harder. I know others who have "beaten" cancer, I want that result so badly, yet I am worried that I won't "be lucky".

I take comfort in this passage from Isaiah 55:8-9:

"My thoughts are not your thoughts,
Neither are your ways my ways," declares the LORD.
"As the heavens are higher then the earth,
So are my ways higher then your ways
And my thoughts higher the your thoughts."

Like an adult smiling down at a child's understanding, this passage encourages me that God will smile down at my worries, my childlike feelings on prayer. He won't let my momentary doubts undo the passionate praying that has been going on, including prayers by some really strong believers, pastors, and church elders.

from Matthew 17:20 "... I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, "Move from here to there" and it will move. Nothing will be impossible for you."

Many of those prayers have been from some of the most faithful people I know.

James 5:14-15 "Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up."

Several pastors and faithful elders have prayed over Carl, laying hands on him and saying prayers of healing.

Catholic Memorial High School and over seven churches have said prayers for Carl, including Crossroads Presbyterian, Alliance Bible Church, St Mary's, Heritage Presbyterian, and more, and (hopefully) pastors in 3 different states.

I hope and pray that the MRI's and CAT scans on Monday afternoon, Feb 22, 2010, will show healing, and perhaps even a miracle; and I thank you once again for your prayers.

Journey's Start 2009

Here is a question I have been asked, when did this all start? (When did you find out Carl had cancer? How did you find out Carl had cancer? etc.)

Sometimes you have been on a Journey for a while, and you didn't even realize it.

• 1993 Carl rips leg muscle running the Dinosaur Dash in Milwaukee Wisconsin.
• 1993-2008 Carl wears a compression band on leg to keep swelling and pain down.
• 2009 summer Carl notices he's limping. Others notice too.
• 2009 Late November Carl finally goes to see his Doctor. (I made the appointment and told Carl to cancel it if he wasn't going to keep it.
  
• 2009 Early December Carl has an ultrasound done on his leg, the ultrasound result - have an MRI.
  
• 2009 Dec 08, Tuesday:
  • 10:30 AM Carl had an MRI on his leg. Result - not good. See a surgeon ASAP.
    
  • Snowstorm that night.
• 2009 Dec 09, Wednesday:
  • 1:30 PM Meeting with Surgeon
  • I think the bad weather helped us get in to see the surgeon this early, because patients had canceled due to weather (??).
  • 3:20 PM blood work
  • 3:30 PM Biopsy on leg.
  • Very cold weather continues...
• 2009 Dec 10, Thursday:
  • 10:00 Carl had a CAT Scan
  • We got this appointment due to a cancellation due to the bad weather.
• 2009 Dec 11, Friday:
  
  • 8:00 AM Carl had a bone scan.
  • We got this appointment due to a cancellation.
  • 1:00 PM Meeting with Surgeon
  • My journal has this note summarizing what I heard of what the Doctor said about Carl's health
  • "MAN U R SICK!"
• 2009 Dec 12, Saturday:
  
  • We went to Breakfast with Santa.
  • On the way home, Carl's neck starts to hurt.
• 2009 Dec 14, Monday:
  • 2:30 PM Meeting with Oncologist
  • Diagnosis: High grade Sarcoma with Epithelial Characteristics. Or something like that.
  • 4:45 PM Flu Shot and H1N1 shot
• 2009 Dec 15, Tuesday:
  
  • Carl went to the dentist for a tooth cleaning totally unrelated to his leg.
  • That night, Miranda and Anthony preformed in a GREAT band concert.
• 2009 Dec 16, Wednesday:
  • A cancer tumor board discussed Carl.
  • 8:00 AM Carl had an Electrocardiogram
  • 10:30 AM Meeting with Lung Surgeon
  • 12:30 PM Lab for Blood work
  • 1:30 PM Biopsy on a rib.
• 2009 Dec 17, Thursday:
  
  • Carl went to work, didn't see any Doctors, and broke out in a rash.
• 2009 Dec 18, Friday:
  • 11:00 AM Carl had a Pet Scan, the first scan head to toe.
  • 1:00 PM Meeting with Doctor. He said what is causing that rash?
    
  • Chemotherapy scheduled to start the Monday after Christmas.
  • And that weekend, Carl's Dad came in for a welcome visit.
• 2009 Dec 22, Tuesday:
  
  • 11:00 AM Carl had a Port put in, for chemotherapy.

Photo above is Carl's Dad visiting Dec 18-20, 2009.


Photo above is Carl's Dad, Carl and the 4 children Dec 18-20, 2009.

Which brings us closer to Christmas.

But wait - a couple of plot twists are developing soon, so I will leave the Christmas Holidays for another post.

We are looking forward to the "Treat" in Treatments!