Hair Loss

Carl Grisa (right) and Anthony on a normal weekend, Carl electing not to shave.


So then I had him shave, and I took this picture.

On Jan 16, 2010, Carl Grisa had me shave his hair off, so that the cancer could not claim it. Three of the four children where off elsewhere with friends, and the chemotherapy was beginning to make hair fall out significantly. This is not something I have any experience in (shaving heads), since all the Grisa's have lots of hair. At first I tried putting chevrons in Carl's hair.

Carl even took phone calls in the middle of the hair cut. (How am I supposed to do a good job?)

Then I decided to go for shaving the words in the back of his head. It wasn't for fun, (this wasn't really a goofy, fun filled hair cut) but because I knew it could be a powerful graphic, and it reflected Carl's feelings. I had figured out by the second word that I couldn't fit all the letters in unless I misspelled sucks. But you get the idea.

I then shaved off the words after I took this photo, and before most of the children got back home. (There is another photo of Carl with a short mohawk, as a British punk rocker, but it looks just wrong.) The children were aware that Dad was going to loose his hair, but they were still surprised.

Here is an after shot with from that night. Ray couldn't stop laughing that he finally had more hair then Carl. [Carl had (and still has) more eyebrow hair, though.]

The next day at church, we sat in the back pew, because the words were still faintly visible after all the hair was shaved off. Who knew? I always wonder if anyone noticed it from the back that day.

Carl, the children, and I now have a hard time remembering what Carl looked like with hair.

Carl's hair - You will be missed, but you shall be back.

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.

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.

First Day of Chemo, Round 3.

Monday, Feb 8, 2010. Off to Froedtert once again, before 8:00 AM. (Thank you Dawn, for getting the children off to school.)

Carl's blood levels were good, he's healthy, so he was cleared for more Chemo. (If Carl's levels weren't good, he would have to wait until he was better. Then he could come back, so that chemotherapy could make him sick enough to get his blood levels unhealthily low again. This is what is done to kill cancer cells...)

Chemotherapy Round three started Monday afternoon in Room 6 of Froedtert's 4th Floor North Tower. We refer to 4NT as "The Spa". Tests, appointments, and admitting procedures took up the majority of the morning.

We had a family meal Monday night. Our independent panel of children randomly tested room service entrees and decided they would be happy to come back for more.

(I think that the food service may change room service delivery rules if we eat there too much, but the party was fun. Room service takes Visa.)
Party entertainment included watching TV.

Carl is having even more Chemotherapy then last time. There are four bags of chemotherapy drugs and 4 pumps going this time, versus 3 bags & pumps last time. The liquids are "infused" or delivered into the blood over 22 hours. Then Carl gets to take a shower, and the staff starts another 22 hour infusion. He should get 4 of these 22 hour infusions over the next 4 days, ending on Friday.

The Brown bag chemical is not embarrassed or shy. It is covered with a brown bag because it is light sensitive. Weird, huh?

Go Carl Go. God bless you and give you strength. I love you, and we wish you were here at home with us tonight.

I am grateful that we live in the time and place where we can get the medical care we need so that Carl can come home in better health - in the long run. Thank you to the medical staff who cares for Carl and others with cancer, and the decades of medical, scientific and engineering knowledge, improvement and innovation that has gone into getting cancer care to where it is today. Many lives have been saved because these professionals have studied hard, worked late into the night, not always taken the easy route, and been inspired.

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.