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Friday, December 31, 2010

Christmas 2010



This is the picture that should have been my Christmas card, so... MERRY CHRISTMAS.

(We went to the Domes and took a bunch of photos with a great background, but the tree behind us was in focus, and we were not. Then the setting sun light lit up a patch in this spot, so we took a quick shot here, but there is a pole growing out of Miranda's head.) This is the second year in a row that I didn't send out Christmas cards. This bums me out more then it should.




We had a good Christmas. Much better then last year's (2009).



Above is a family photo snapped at Carl's sister's house on Christmas day, Saturday, December 25, 2010. The next day Carl's hair mostly fell out, and he had to wear a hat to church to cover the bare patches.

On Monday, December 27, 2010, Carl went in for inpatient chemotherapy from Monday to Thursday December 30, 2010. The Doctors shortened the chemotherapy stay by one day so that Carl could try to attend New Years Day events. He is really tired, and so am I, but we are both glad he is home again.

I am feeling reflective on this year, and I thought I would be blogging about my feelings, but I find I just can't. My
feelings are "complicated". 2010 was a good year. At the beginning of 2010 there were no guarantees that Carl would still be here one year later. All I heard was that terrible word Cancer. I know more of what the cancer journey is like, and what will be happening in 2011 is not the big unknown that the start of 2010 was, but I am still unsure of what I feel about all this. I had a lot of good days and good moments. I had some bad days and bad moments. I think Carl could say the same. I am glad my family is intact, I am thankful for friends, family, and good health care. I hate cancer, and the fact that Carl has cancer. I want to end this paragraph on a good note, so I guess I will say that I am hopeful for 2011.

I'll quote Carl (although he was not the first to say this) - A day above ground is a good day.

Happy New year to you all.

Sunday, December 19, 2010

December Update.

November was kind of a pain in the neck for Carl. This is a pun, because November is the first time Carl was having significant pain in his neck since, maybe, February 2010. The Doctor's reviewing his PET scan decided that the Irinotecan / Vinchristine chemotherapy was not working. So, on Monday December 6, 2010 Carl was once again checked into Froedtert Hospital for inpatient chemotherapy. This time he was given Ifosomide, a drug he has had before, and a new for him drug (something like Itopocide, I'll correct this when I get the name right). The Doctors also took this time to help get Carl's pain under control.

Carl was in Froedtert from Monday December 6, 2010 to Friday December 10, 2010, getting out after 8:00 PM in the evening. What's new at Froedtert? New Chemotherapy Pumps. Ooolala. (See photo below)


This is a kind of boring update.

Here is a photo of our family from the Thanksgiving weekend. Notice that Carl has some hair. The extra dog on the right is Rosie whom we watched for a couple of days. This is a fast snapshot, not a portrait, no one combed their hair, (Carl hasn't combed his hair for months), and I didn't take the photo. I can't believe I am adding this photo in, except this post is SO dry and boring. I do like Anthony's foot, I think it is cute.


There shouldn't be any chemo from now until past Christmas, and Carl should be feeling fine for the Holidays. Carl continues to work at his job pretty much full time when he is not at the Doctor's or getting chemotherapy.

Wednesday, December 8, 2010

Anniversary...

One year ago today, Dec 8, 2009, Carl and I found out that Carl had cancer (a large tumor) in his leg.

I'm not sure what to think about that.

I guess I should celebrate that he has survived the first year really well.

Thursday, December 2, 2010

Thanksgiving 2010

Thanksgiving was great. When you have 4 days off, like Carl did, you can fill the days with lots of relaxation AND getting together with friends AND movies AND TV AND cooking. Perhaps a silver lining of Carl's cancer is that we are getting better at enjoying the weekends.


Carl's 'hobby' of cooking has reached new heights in 2010, and the whole family is glad. So, over the Thanksgiving weekend Carl made the Thanksgiving dinner. He made a turkey awesomely, used his new super cool meat thermometer, etc.

Carl's neck has begun to really bother him. At the beginning of 2010, Carl got a prescription for Oxycontin, 200 pills. Until the middle of November, Carl rarely had pain the required him to use a pain killer, usually Motrin or Tylenol. But in November, Carl started taking more pain killers, including prescription pain killers, and over the Thanksgiving weekend his neck was in pain almost every day.

On Monday Nov 30, 2010, Carl had a PET scan to see how the new Chemotherapy (Irhineotecan and Vinchristine) are impacting the tumor. On Thursday, Dec 2, 2010 Carl went to the Oncologist. He was scheduled to start a 3rd round of Irhineotecan and Vinchristine. But the Oncologist said the PET scan indicated that the Irhineotecan and Vinchristine was not being effective, and the neck tumor is showing metabolic activity. DXXM. I was hoping the neck pain was because the tumor was dying, not thinking about growing.

This means goodbye to these 'nice' chemotherapy drugs that let Carl's hair grow, and only take 2 days of chemo infusion every 21 days. We had to schedule new chemotherapy drugs, and they will take longer to infuse. But chemotherapy is better then no chemo, so....

The Oncologist gave Carl a new pain pill plan, and on Friday Carl's neck was already in better shape, pain wise. Wednesday Carl's pain was so debilitating that I was really worried.

With the change in plans, we got to have a nice weekend of getting ready for Christmas, eating at a really good Chinese restaurant (Yen Chings), and shoveling the first snow this winter, visiting the Domes and Discovery World, and more. I hope you enjoyed your weekend and Thanksgiving.

Thursday, November 18, 2010

A day of chemo

On Thursday, November 18, 2010, Carl got his chemotherapy with the main chemotherapy drugs Irinotecan and Vincristine. I say main drugs, because there are other drugs that they give along side of the chemotherapy drugs. They got blood drawback from his port (after a time) without the use of TPA. Carl got oral doses of 8mg Zolfran (also known as Ondancetron), and 10 mg Dexamethasone. Through the IV they gave him 0.2 mg of atropine. These first 3 drugs are given to prevent side effects from the main chemo drugs. The main chemo drugs follow - Carl was given 241 mg of Irinotecan in saline through the IV over 60 minutes, followed by 2 mg vincristine in saline over 15 minutes. We spent the time watching the parts of Buffy the Vampire Slayer, Season 1.

I hope these drugs are effective and that Carl can continue getting them for quite some time. At the end of the month the Doctors will check to see if the drugs are holding back the tumor.

Thank you again for all the encouragement and prayers.

Wednesday, November 17, 2010

November Chemotherapy



On Thursday, November 11, 2010, Carl started a course of chemotherapy that featured the drugs Irinotecan and Vinchristine. The 'protocol' for this chemotherapy is a dose on Day 1 and Day 8. On Day 21, the patient can start the course again. The Day 1 and Day 8 doses are delivered through IVs into his port. He gets these doses at the outpatient Froedtert Cancer Center Day Hospital.


Under this protocol, Day 8 is tomorrow, Thursday, November 18, 2010. So tomorrow we will once again trek down to the Cancer Center. Carl will be connected to the IV for around 3 hours, making this one of the shorter chemotherapy sessions, although with the registration and waiting, we will end up being at the Cancer center more then 1/2 of the day.

Carl 'completed' one course of chemotherapy with the drug Irinotecan before, getting the drugs on Monday, October 18, 2010 and Monday, October 25, 2010. He tolerated the Irinotecan well, so the Doctor added the Vincristine to this course.

I hope these drugs are effective and that Carl can continue getting them for quite some time. At the end of the month the Doctors will check to see if the drugs are holding back the tumor.

Thank you again for all the encouragement and prayers.

So, isn't this kind of a boring post? I hope the photos from one of our trips to the pumpkin farm make it more cheery.


This last photo shows one of the side effects of the Adriomycin chemotherapy. (photo taken October 17, 2010.) Carl didn't loose all of his eyebrow or eyelash hair like some people do, but wow, did it thin out. Already his hair (and eyebrows, and eye lashes) are growing back in. Another reason I hope that Carl can use these drugs for quite some time.

Monday, November 15, 2010

Feeling tired

Carl said to me today - 'I just don't know why I feel so tired right now.'

Hmmm... let me think? Maybe a large dose of Irinotecan and Vincristine on Thursday has something to do with it?

Or possibly surviving a weekend with four active children.

Whatever.

Tuesday, November 9, 2010

Diet changes due to Cancer

Carl goes through the cancer treatments with a good spirit, and follows the Doctor's advice. What else are we doing to battle the cancer? Actually there ARE some dietary things we are doing which we hope will help crush the cancer cells.
Raspberries Cancer diet berries and Agave Nectar

My sister-in-law sent me the book titled "Anti cancer A New Way of Life", written by research Doctor, David Servan-Schreiber, MD, PhD. The information on the dietary changes Anticancer diet Omega 3 eggswe are trying come mostly from this book. We told our Oncologist about the book, and he encouraged us with a anecdotal tale of one of his patients. There is a quote in the book - "All great truth goes through three phases. First it is ridiculed, then violently attacked, and finally accepted as self-evident." It might take medicine 20 years to accept some of the data in this book regarding diet, but Carl can't wait that long.

The scientific data points to the conclusion : People who want to protect themselves from cancer should seriously reduce their consumption of processed sugar and bleached flour.
(Fruit without sugar or syrup can be unlimited, fructose and glucose are different). There are many more dietary pointers.

There is an epidemic of cancer in industrialized countries and particularly Western countries. The epidemic is real, and the difference between "East and West" is shown to be not due to genetics. Cancer is a disease of "rich people".

Understanding what has changed to create this epidemic of cancer is important. Three major factors are identified.

  • The addition of large quantities of highly refined sugar.
  • Changes in our food due to changes in farming and animal raising
  • Exposure to a large number of chemical products.


Over hundreds of thousands of years, our bodies genetically became accustomed to a diet of fruit and vegetables, with occasional meat or eggs. The essential fatty acids of Omega 6 and Omega 3 were balanced, there was very little sugar, and no flour or cereals. Our ancestors sugar consumption averaged about 4 pounds (of honey) a year.


Today, 56 percent of the 'Western diet' calories come from three foods sources NON-EXISTENT to our ancestors: refined sugars, bleached flour, and vegetable oils.


Today
the 'Western diet' contains over 10 times more Omega 6 then Omega 3.

Today Western human sugar consumption is between 50 to 150 pounds a year.
The high fructose corn syrup "new ingredient" makes things worse.

Cancer is out of control cell growth. Sugar nourishes cell growth. Cancer is largely dependent on glucose, the form of digested sugar in the body. White flour also contributes to glucose.

Some specific anti cancer dietary changes we are trying:
Carl tries to be a very low sugar diet. Basically
sugar is evil for Carl. He tries to use Agave nectar instead of sugar to sweeten tea, or lemonade. I encourage him to not drink sodas.

I encourage Carl to take a daily green Tea supplement, turmeric supplement (with pepper to increase absorption 2000%), and Omega 3 flax seed oil (as pills - Carl refuses to take the liquid form).

We are eating berries (raspberries and blue berries and strawberries) often. Summer was great this year, we would on some days buy and eat $7.00 of raspberries and strawberries when they were in season.
We also eat a lot more veggies (asparagus, etc.), but this tapers on and off.

We try to use only Omega 3 eggs, which cost 3-4 times as much as normal eggs. Paying $3.00 for one dozen Omega 3 eggs doesn't seem to make sense, so I find myself hoping the words 'Omega 3' are more then ink on the label.


In the past, our family is are good at short spurts of well intentioned plans that fade eventually. We will see were this one goes. All of these dietary changes aren't cheap. But I hope they will be effective.

Sunday, October 31, 2010

Halloween Fun and cooking

Carl Grisa

Halloween - Carl says it is his favorite holiday. (Huh? I mean, of all the holidays...)


So... Carl carved pumpkins. He made pumpkin seeds. (A very weird thing to eat, if you ask me. But whatever.)

Friday he made fudge. Saturday he made omelettes, hamburgers, and deep fat fried french fries.



Sunday he made caramel apples. The caramel was from scratch - you know, starting with sugar, corn syrup, condensed milk, vanilla and salt. For dinner he made a gourmet shrimp stir fry with asparagus and peppers. Busy weekend! :)

Sunday's stir fry with shrimp, peppers and asparagus.

HAPPY HALLOWEEN !

Friday, October 22, 2010

October Update - Chemo Course 12


photo taken October 17, 2010


Fall colors, falling leaves, pumpkin farms, and yard work - October is more then 1/2 over, and we have been trying to enjoy autumn. The children are busy in school, and Anthony is busier then ever - being in the Homestead High School Play 'The Odyssey' means he can be gone from 6:30 AM to 9:00 PM at school, especially in this last week before the three performances on October 22-24, 2010. Carl had a brief break from Chemotherapy. Carl had inpatient chemotherapy at the beginning and end of September, three weeks apart, which resulted in him having no chemotherapy in the first half of October.

Visits to Froedtert continued, though. On Monday, October 4, 2010 Carl had some testing (a pet scan and a CT scan) to see what is happening to the tumor. The scan results showed that the tumor is not expanding, and is less active then before. Good News.


Carl has now completed six courses of chemotherapy with the effective and powerful drug Adriomycin (also known as Doxorubicin). The doctors won't be giving him any more. The patient that might have about a 2% chance of cardiac arrest after six doses of Adriomycin would possibly jump to a 18% chance with the 7th dose. Carl has now reached his maximum lifetime dosage.

On Monday, Octo
ber 18, 2010 Carl had a course of chemotherapy with the drug Irinotecan, a new drug for him. It is the fastest chemotherapy session he has had, arriving at 9:00 AM and out by about 2:00 PM. On Tuesday, October 19, 2010 Carl felt well enough to go to work. Wow. Stay at home, relax, and recover; or distract yourself with a job you love? I understand that relaxing isn't so great when you are feeling under the weather, and I understand how distracting yourself from 'things' can work so well.

Carl will get a second dose of
Irinotecan on Monday, October 25, 2010.

But before the 2nd dose, Carl and our family will watching Anthony in 'The Odyssey' - in fact, some of us will probably see every performance. Our whole family is looking forward to the weekend...

Tuesday, October 19, 2010

Writing a blog can be hard.

I've been writing blog posts for this blog for over 9 months now. Perhaps writing blog posts should be getting easier, but in some ways writing and publishing the blog is getting harder.

My posts are perhaps less frequent, and less funny. Cancer really isn't that much fun, and so when all is well I prefer to ignore it (yes, I am ignoring the cancer as much as I can.) Some of the posts feel like reruns, and while I am trying to think of some new way to write about it, the delay builds. When Carl is doing well, we try to live it up and celebrate life, and when Carl is dragging or tired we try to have a higher quality, more relaxed home life. Both of these circumstances distract from writing a blog.

I have lots of ideas, that I get late at night or while driving in the car or waiting somewhere. I have multiple posts (some even funny) written in a draft mode, waiting for the final edits. But the final edits are getting harder. I defined goals to myself for this blog, and the audience I was writing for. Trying to keep up a level of writing, and improving it, gets harder. A blog is not a book, carefully planned start to finish. Sometimes I am not sure how much I want to say. This blog does not reflect my every feeling along the way.

Sometimes a post started in between chemotherapy treatments gets pushed aside because of the next treatment, and then the chronological nature of the blog makes returning to the started post seem awkward.

My photography was meant to be a large part of this blog, but the extra steps the photography requires has prevented some of that.

And then there is the real life that intrudes. What do I do about that? This is a blog about a journey my family is on. An unfortunate cancer journey. So what do I do with unexpected side trips?

My 89 year old father passed away Oct 4, 2010. This side trip is too major to be ignored, and also too big to be included. My thoughts and feelings about my father's death are obviously on my mind as I think about cancer and it's possible outcomes, about the blessings of a long life fully lived, or even a shorter life well lived and full of blessings. My thoughts and feelings about my father's death are on my mind when I think of my dad's multi-year medical decline, and my husband's far shorter medical struggle and my hope and prayers for it's multi step conclusion - first control of the tumor, then remission, then "cancer free".

In any case, I am not able to process how I should handle my father's death in this blog. So I guess, other then mentioning it here, I will leave it out of the blog for now. My next post after this one is already written. I'll try to post it a day or two after this one. But I felt I could not post my next, already written blog post today without mentioning what I mentioned here in this post.

I should wait before I publish this blog post, edit it one more time and try to make it a compact coherent piece, rethink it, redo it... but I don't think I know how to edit this any more to make it more coherent. So I won't wait, anymore, for now.

Friday, September 24, 2010

Inpatient Chemotherapy

Carl has been getting inpatient Chemotherapy this week at Froedtert Hospital, from Monday September 20, 2010 to Friday, September 24, 2010. I am going to pick him up from the hospital shortly.

I am finding it curious how after only several months, what seems absurd has become remarkably routine - It's another inpatient chemotherapy session, with the children in school and me single parenting them. It's like Carl is on a business trip instead of getting chemotherapy.

Thursday, September 9, 2010

First Day of School and chemo.

On Tuesday, August 31, 2010, Carl started a five day cycle of inpatient chemotherapy. The children and I visited him for "Dinner at Froedtert".

On Wednesday, September 1, 2010 the children headed off to their first day of school. I visited Carl at Froedtert, and Carl and I started a 1000 piece puzzle. The children came home to homemade cookies, made in advance. Anthony stayed after school at Homestead for a drama club meeting - already busy!

On Thursday, September 2, 2010 Carl was doing pretty well. Anthony stayed after school at Homestead to audition for a part in the school play. I took Nathan to a parent meeting at Steffen school that night.

On Friday, September 3, 2010 Carl pretty much was just looking forward to going home.

On Saturday, September 4, 2010 I picked up Carl from the hospital around 4 in the afternoon. We didn't finish the puzzle, but Carl left anyway.

On Sunday, September 5, 2010, we went to church and then I took Carl back to the hospital for a neulasta shot.

On Monday, September 6, 2010, we celebrated Memorial Day - The children had no school and our family went to a cookout at Carl's sister Heidi's house.

On Tuesday and Wednesday, September 7-8, 2010 our family got to get up together, get children out to school, and get Carl off to work, then later home for dinner and homework. On Wednesday we ate at Olive Garden just to celebrate - and because the Mequon Public schools have no school on Thursday!

------------------------

[ I wrote this post on September 9, 2010; and then never published it until today, Oct 15, 2010. I couldn't think of anything fun or inspirational to add to it, and it seemed sort of boring. But I guess it notes that 1st week of school - kids busy, Carl in the hospital, etc. Carl did 2 weeks of inpatient chemotherapy in September, making the 2010 school year start the strangest ever. I'm not sure how many people will even see this post - it's out of order and I don't know how that effects RSS feeds, etc. But I decided now to post it anyway. ]



Wednesday, September 1, 2010

School Starts...

Summer rushed by. In mid-August I registered the four children for the free public school (at great expense.) The rest of August raced past, and Wednesday, September 1, 2010 was the first day of school.

Tom is a sophmore a Homestead High School,
Anthony is a freshman at Homestead High School,
Nathan is in 7th grade at Steffen Middle School, and
Miranda is in 6th grade at Steffen Middle School.

On Tuesday, August 31, 2010, Carl started a five day cycle of inpatient chemotherapy at Froedtert Hospital. He will be getting chemotherapy featuring the drugs Adriomycin & ifosomide. This will be Carl's 5th cycle of chemotherapy with Adriomycin, and there is typically a limit of six cycles of Adriomycin.

We have gotten the good feedback that Carl's sarcoma is responding well to the Adriomycin. This is a good thing. Some sarcoma's don't respond to anything. The tumor in Carl's leg now seems to be "metabolically inactive", and has shrunk somewhat. I am hoping that it stays that way, and shrinks even more.

I don't have the time to describe what getting four children off to school with a husband in the hospital is like, or any emotional impact, but the start of school was surprisingly calm. Carl bought and got the children's school supplies organised, I registered the children and organised clothing and schedules, and the children seem more mature and organised.

We will see how the rest of the week goes.

Sunday, August 15, 2010

Friday homecoming.

Friday, August 13, 2010, I picked up Carl from Froedtert hospital around 4:30PM. His 5 days of inpatient chemotherapy was over for now. Friday was a beautifully hot summer day, with the emphasis on hot. I had the children scattered about so Carl could come home to a relatively quiet and relatively clean house and go crash in bed. (We were dog-sitting Cali. Two dogs happy to see Carl isn't exactly quiet.)

After getting Tom, Nathan and Miranda to the Logemann Center's Friday the 13th party (with costumes), I tried to clean up the house.

  • The kitchen & dining room looked like four teenage raccoons had eaten whatever stuck their fancy, leaving unfinished food and wrappers everywhere. The half eaten poptarts alone could feed the hungry children of a minor African country.
  • The living room looked like four teenage poltergeists had had a slumber party for a week, leaving bedding and clean and dirty clothes strewn about, with the occasional food items tucked here and there. (Empty bowls and cups.)
  • The foyer, car, and bathrooms were decorated with wet (car-foyer) and dry (bathroom towel bar, overloaded) swimwear and towels.
  • Shoes and water shoes were mounded in the foyer like an Indian effigy mound, perhaps as a monument to the beta fish (Shannon) that died during the week after a month of listlessly sleeping on it's side in it's bowl, and then fluttering it's fins apathetically for a minute or so whenever I shook the bowl to see if he was dead. I think it was the chlorine smell from the pool gear that eventually did him (Shannon) in. (Colorful beta fish are usually male, in spite of whatever your children name them.)
Anthony discovered that the local gas station Kwik Trip will trade his lawn mowing money for glazed donuts, milk shakes, and chocolate pop-tarts, all items I pretty much refuse to buy. He generously bought some for his siblings, and left milk shake containers everywhere - car, garage, basement, kitchen - everywhere except the kitchen garbage can. We discovered that the dog we were babysitting (Cali) will eat mini carrots from the ice cream bowls if left near the XBOX controller - It probably looked like a dog food bowl to Cali, who I believe sees only in black and white.

I cleaned up the house and brought Carl home. Then, I went to pick up three of the four children. (Anthony was already home.)

I had planned that Carl would come home and crash and rest in bed, like he has on other weeks after inpatient chemo, but the summer weather, or the extra light out, or whatever, made Carl come home with extra energy and a desire to not lay in bed (because, after all, that is what Carl has been doing for the last 5 days, 20 hours + a day)
So, while I went to get three of the four children, Carl made a meal for Anthony. After the children were home for 20 minutes, and had snacked, the house pretty much looked like it had before I cleaned, only now there were costumes as well in the living room.

We all went to bed that night, the first time in a week all of us were sleeping under one roof. That was nice.

Thursday, August 12, 2010

Thursday - the low day.

Well, Radiation is a cake-walk compared to chemotherapy.

I visited Carl twice Wednesday, August 11, 2010, and a little bit on Thursday afternoon, August 12, 2010. On Wednesday his voice was getting a bit hoarse, but he still used the stationary bike for way more then 30 minutes. Thursday is the worst day when he is getting the Adromycin - Ifosfamide chemotherapy combination. Carl basically won't eat today and will try to sleep most of the day away. There is an array of auxiliary drugs that he got for the side effects, but he still is feeling horrible.

Chemotherapy is like watching Carl age two decades in one week. He goes in fit, lean and lightly tanned, and then ages visibly each day. At least we know he will recover - after the chemotherapy course is over. Tomorrow (Friday) Carl will be lifted by the thought that he can drag his weary body out of the hospital, get disconnected, and go home to be left alone by the medical professionals.

Here is another funny thing about the inpatient chemotherapy. The third shift staff has to take blood daily between 11:00 PM to 3:00 AM. So Carl basically tries to stay awake until they come in so they don't have to wake him in the middle of the night to take the blood sample. Crazy, huh?

Tuesday, August 10, 2010

A Surreal Moment.

On Monday, August 9, 2010 Carl went into Froedtert to start a course of chemotherapy treatment, basically for 5 days non-stop. (They do disconnect him to take a shower, would that be considered a break?)

Miranda and I took him in, leaving the house before 8:00 AM. It wasn't planned that Miranda would come along, but she wanted to, so of course I took her. At the hospital, staff did the patient intake.
The nurse tried to access Carl's port for blood work. This is done by injecting a saline solution into Carl's port, and then trying to suction back blood. It frequently happens with Carl that they can't draw back blood, and this was the case Monday. Then the nurse must order up something called TAP(?), get it from the pharmacy and defrost it, inject it into the port, and let the drug sit in the port for 1 hour. It dissolves any blockage, but is an automatic 1 hour delay from the time it is injected. Ugh.

The Doctor was paged with Carl's weight and vitals. The Dr. calculates the dosages, etc, and places the order. The chemo drugs were ordered and being worked on by the hospital pharmacy when Miranda and I left around noon, but chemotherapy drugs hadn't started. It did start before 1:00 PM. (At 1:05PM I was dropping Tom off at his 8th day of his job at the Logemann Center, and I was 5 minutes late. Sigh.)

Carl was in good spirits when Miranda, Anthony, Tom and I visited him for a dinner at the hospital that night. (Nathan was at a birthday party.) After our little entourage left, Carl was going to bike on the stationary bike for 10 to 20 minutes, but the MP3 player's Guns and Roses music was so good he biked for 1 hour. Chemotherapy off to a good start.

On Tuesday, August 10, 2010, I had a surreal moment as I was driving home after a long day of driving the children all around. Tuesday seems perpetually to be the busiest day of my week. At 8:10 PM I was driving home from Cedarburg; home to where Tom would shortly be dropped off by a friend after Tom's busy day at state fair, a friend's house, and another activity that ended at 8:00PM. Tom had been gone from the house from 10:00 AM to 8:00 PM.

As I drove, Miranda, Nathan and Anthony were talking to their dad (Carl) with my cell phone after a day of lessons, friends, swimming and more.
I listened in on their conversations over the cell phone as they told Carl about their day, and asked Carl about his day. (What did you eat for lunch, what did you eat for dinner, where are you in the book you are reading, etc.) They were each wanting to add something - 'I get to talk to dad again after you are done'. Anthony was the briefest on the phone, answering questions from Carl instead of asking questions, but then suddenly coming up with something more after he was done "talking".

My surreal moment was this. I have no clue what it feels like to be a child, talking to your dad in the hospital, getting treated for cancer, after a long day of fun and busyness, when you haven't had time to visit your dad, but you miss him nevertheless. I usually try to empathize with my children, put myself in their shoes and imagine how they are feeling, but here I find myself at a complete loss - I have not been in this situation as a child. I have no clue what they are thinking or feeling. And I am unwilling and or afraid to ask them about it.

P.S. I do know that I wish I could have easily visited Carl in the hospital today. Carl said I should think of this as him being gone on a business trip - I wouldn't feel compelled to visit or call. But I feel that I didn't take care of Carl the way I could have/should have. Last sigh for the evening...

Sunday, August 8, 2010

Boy Scout trip and a swollen leg.

July flew by. Carl went to Garner Dam Boy Scout camp (in Wisconsin, North of Shawno) with Tom, Anthony and Nathan for 1 week - Leaving Sunday, July 25 and returning Saturday July 31, 2010. They survived mosquitoes and tornado warnings and the food prepared by the Boy Scouts. (Meat sometimes burnt, sometimes raw, always an adventure, I gather.) He had a great time in the great outdoors, sleeping with critters crawling under his tent. Carl returned with fuzzy gray hair and a leg swollen up like a watermelon. (OK, maybe it wasn't swollen up quite that big.)

On Monday, August 2, 2010 Carl went in for lab work and to get some chemotherapy. Because his leg was so swollen, they gave his leg an ultrasound to see if there was a blood clot in his leg. Good News, no blood clot. Bad news (or is this good news?) no chemotherapy, at least this week.

On Wednesday, August 4, 2010, a bunch of Doctors discussed Carl at Froedtert's "tumor board". The consensus after the meeting of the Doctors was to continue with chemotherapy.

[Here is a fun aside. The Doctors have three main options for treating cancer. In some cancer patient's terminology, Doctors can Slash, Burn or Poison the cancer. "Slashing" is surgery, "Burning" is radiation, and "poisoning" is chemotherapy. I believe Doctors rarely refer to these options with the cancer patient's slang.]

On Thursday, August 5, 2010, Carl went to the oncologist's PT (Physical Therapy) lymphatic system lady. (OK, I should find out her real title). She showed us how to wrap up Carl's leg to ease the swelling, and a massage that may help his lymphatic system.

So tomorrow, Monday, August 9, 2010, Carl will be getting chemotheraopy. He will be returning to the five days of inpatient chemotherapy, featuring the drugs Adriomycin & ifosomide.

Wednesday, July 14, 2010

Post July 12 Chemo

Carl had outpatient chemotherapy on Monday, July 12, 2010. The main drugs Carl got were Gemzar (also known as Gemcitabine) - and Taxotere, (generic name - Docetaxel). He came home and biked and had a great dinner. I think the Dexamethasone, (a steroid) prescribed by the oncologist, really help him. Wow.

Tuesday, July 13, 2010, Carl went to work, biked when he came home, and ate very cautiously. He says he feels well when he doesn't eat much.

Wednesday, July 14, 2010, Carl went to work. He was beginning to get tired earlier, and he ate cautiously, and he went to bed before 8:00 PM, but he did get some exercise (biking) in. Since I think exercise is important in fighting cancer, I am glad. And if nothing else, Carl slept very well tonight. I don't think he even heard any of the thunder that sounded like it was coming from right overhead.

I wrote this in July, and never posted it. I guess now is better then never.

Sunday, July 11, 2010

July Vacation

July has been flying by at a fast pace.

Carl, the children and I went to Carl's Dad's cabin in Grass Lake, Michigan for a week over the 4th of July. We had a good time hanging out with relatives and cousins. We saw an airshow and a hot air balloon launch. We boated and played and fished. (OK, I did not fish, I just took pictures). We saw sights and ate out. We had a private tour of a haunted house. Carl did most of the driving (his choice), and we put over 1100 miles on the car.

2010 Battle Creek hot air balloons

We returned to Wisconsin, relaxed over the weekend, and attended my Godchild's graduation party (He was a salutatorian, I'm so proud).


Carl has been doing well and his leg has recovered well enough that this weekend, (July 10, 2010) Carl even went for a bike ride in Mequon on Saturday.

Vacation is over, tomorrow (Monday, July 12, 2010) is another chemotherapy day.

People have asked me how long will Carl be getting a chemotherapy course more or less every three weeks. I usually answer "through 2010". The Doctors don't say much on this point, basically the answer is "a long time".

A friend who had breast cancer (yes, that is a totally different type of cancer, I know) had chemotherapy every three weeks for two entire years. I didn't know they did chemotherapy that long for breast cancer. Carl's sarcoma is probably as bad or worse then her cancer was. (It is certainly rarer.)

Perhaps the Dr's. don't want to put us in a coma by telling us how long Carl's sarcoma will need to get chemotherapy. Either way, chemotherapy beats the alternative, and I no longer dread the "chemotherapy day", or get as stressed out before it, like I used to. I guess one can get used to almost anything. :-O

Saturday, July 10, 2010

Healing prayer

A devout and respected friend wrote down this prayer for Carl, and I wanted to share it. This prayer is written to be said by a person as a healing prayer for their self. It can be modified to be a prayer for healing someone else.

Father,
I thank you that in 1 Peter 2:24, your word says,
"by His stripes we were healed."
If I was healed, then I am healed

and You have put the same power inside of me that raised Jesus from the dead, according to Ephesians 1:14 and I praise You for this,
and by Proverbs 18:21 "Death and life are in the power of the tongue" that I not only have this power, but the authority to release this power through my words

so I speak to my cancer/pain/sickness;
cancer/pain/sickness; in the name of Jesus
I command you to leave my body

and I command whatever the source of this cancer/pain/sickness;
the root cause of the cancer/pain/sickness

and I curse this root cause
and command it to dry up and be dead
and this cancer/pain/sickness to come out of my body in Jesus name.

Now Body, you recover.
If there was anything or any part of my body that was damaged;
I speak the life of God; the quickening power;
the resurrection life to my body

and I thank you Lord God; my creator, my sustainer,
I praise you most High God - All praise and glory and honor to you!



Personally, I have seen the power of prayer before often enough to be able to affirm it's results. I don't pass results off as coincidence. I can understand a skeptic not believing in the power of prayer, but that just informs me that a skeptic has cut themselves off from an powerful tool.

God does not answer every prayer the way we hope it will be answered. And it is easier to believe that a prayer like this has more possibility of reducing pain then eliminating cancer (Why?). But I have not yet ruled out that prayer (and the Dr.'s skills guided and inspired by God) will cure Carl, and I know that to date the prayers Carl and others have said have had positive outcomes already within Carl's cancer.

I am sharing this prayer today because I have been internally urged to share it ("called?") - There are many others out there who suffer with pain, sickness, addictions, or other issues whom I believe this prayer can help. Share this prayer with others as God calls you to.

I know this prayer has helped my family. And I thank again all of those people who pray for and continue to pray for Carl. God Bless you.

Friday, June 25, 2010

Vacation, Fathers Day, and Chemo

Carl's outpatient chemotherapy on May 24 and June 1, 2010 left him feeling the worst he felt post chemo. His leg was in such sad shape that the chemotherapy scheduled for June 14, 2010 and June 21, 2010 was canceled - his leg needs time to heal. He couldn't bend his knee or exercise. Fortunately, as June progressed, Carl leg improved, and he get lots of rest. Carl went to work the week of June 14, and on Thursday, June 17, he went to Church for the first time in a while. Miranda's VBS (Vacation Bible School) sang at the service.

Crivitz Wisconsin up north

Friday, June 18, 2010, Carl's hair was falling out so fast that he asked me to quickly shave it before work. It was about an inch long, and now it is gone again. However, because the chemotherapy was canceled, we were able to visit a friend up North at her house on a lake near Crivitz - a mini vacation.


Saturday and Sunday, June 19-20, 2010, We were up North! It was beautiful and very restive. Carl slept a lot. Carl had a nice Father's Day.

Sunday night we had a father's day party with friends. Here is the whole family on Father's day.


Wednesday, June 23, 2010, Carl was finally able to bend his leg enough to exercise on a stationary bike at the YMCA. (We recently got a membership).

Thursday, June 24, 2010, Carl met with the Dr.; his leg had healed enough and he got a dose of Chemotherapy. The main drugs Carl got were Gemzar (also known as Gemcitabine) - and Taxotere, (generic name - Docetaxel). He last got this drug combination on June 1, and felt very unwell after it. We are hoping this time his reaction will be more tolerable. The oncologist reduced the dosage of Taxotere.


Friday, June 25, 2010 Carl went to work and got his Neulasta shot around 6:00 PM. This is the shortest time we have had to wait for the Newlasta shot, I guess we should bring all four children more often.

(Carl is hamming it up for the photo below - I promise... The nurse was wonderful.

Saturday, June 26, 2010: This was the Day that Mequon has their 4th of July celebration - (The Fun before the Forth, they call it.)
Carl felt OK for the parade and park visit, and went to sleep early while I went to the fireworks with two of the children.


Sunday, June 27, 2010: Carl got up after a lot of sleep and made it to church - It's very peaceful and easier to do when the four children are sleeping in.
Then Carl came home and took a nice long nap, woke up for several hours around dinner time, and felt well enough to eat. His leg feels much better, (he can bend it!). The current chmoetherapy makes him feel light headed and tired, but so far he is doing better then last time, (knock on wood). Tomorrow should be the worst day, if past trends are any indication.

Monday, June 14, 2010

Early and Mid June

I haven't blogged for a while. It's harder to get motivated to blog when things aren't going so great. Things could be a lot worse, though, so I guess I'll bring you up to date and hope that the next blog can be fun, witty and full of good news.

Carl had Chemotherapy (outpatient) on May 24, 2010, and June 1, 2010.

Saturday
and Sunday, June 5-6, 2010, Carl pretty much laid in bed and crashed. He took pain pills, nausea pills, and more. The medicines pretty much only took an edge off feeling poorly. Carl didn't sleep well, and he wasn't interested in eating anything. I guess we could probably say Carl had a normal reaction to chemotherapy, but since it isn't normal for us it makes me very concerned. How do you tell the difference between a normal reaction to chemo and dying? I don't know, and neither does Carl. I guess if you are really doing badly, you get a temperature first. Carl's leg rash continued to get worse and hurt. Carl felt well enough to attend a boy scout meeting, but that was the extent of his energy for the day.

Monday, June 7, 2010, I think Carl dragged himself to work, and dragged himself home. Don't eat, try to sleep. The children are having their last week of school, with all that entails - special projects due, tests and exams, field trips and taking extra food to school, etc.

Tuesday, June 8, 2010, Carl didn't go into work. He was actually sleeping better, and not taking pain pills, but still no interest in eating. And it was cold and rainy out, and we had a power out. Tom was home from school, since it was exam week and Tom had no exams on Tuesday.

Wednesday, June 9, 2010, Carl finally had some energy. He went to work, even though his rash now actually had a charcoal gray looking area on it. Pretty. On a happy note, the whole family went to Anthony's 8th grade graduation ceremony Wednesday night. Carl's leg hurt enough that he was using his cane, which he hasn't used for months. (Carl says the pain pills don't do anything for his leg, so he doesn't take them.) Two children are now done with school for the summer (Tom and Anthony) and the other two have just one more day.

Thursday, June 10, 2010, Carl went to work, and called to tell me that the rash area behind his knee cracked open and was oozing clear blister like fluid. (Yes, I know - GROSS.) I had enough of worrying about his leg rash so I called the Dr. and dragged Carl down to the cancer center. (Carl went as a favor to me.) The various people said his leg was having radiation recall, or variocolitis[?] (something unpronounceable, starts with a v, and ends in itis), and the Oncologist said that Carl could cancel his next chemotherapy (Scheduled for June 14, 2010). Chemotherapy will wait until his leg heals up and doesn't look so disgusting. Go heal - and so Carl went back to work, and I collected Miranda from her last day at Elementary school. School's out for the summer!

I am now done with my one year of having four children in three schools. (Tom at Homestead High School, Anthony and Nathan at Steffen Middle School, and Miranda at Wilson Elementary School.) Miranda graduated from 5th grade, ending my 11th year of continuously having children in Wilson Elementary School. (From 2000 to 2010) Under other circumstances I think I would have felt nostalgic, but considering the past week; and all of 2010 to date, I am just thankful that the Elementary School "chapter" is over. I didn't even take any photos from the last day of school. (I think I will remember it anyway.) I am grateful for the great school and teachers my children have had there, it may well be the best school my children will ever have, but I am so glad the school is done.

Friday, June 11, 2010, Carl went to work, and the kids stayed home. Carl is feeling better and eating, and he will be able to rest a lot over the weekend. The children already want to do everything they want to do in the summer today, friends, shopping, biking, swimming, camping, etc. Three of the children and I did head to the airshow at the lakefront at 3:30.

Saturday & Sunday, June 12-13, 2010, Carl is doing better each day, his leg is still a mess, but we are getting some rest.

Monday, June 14, 2010, Carl to work, Vacation Bible School starts (for Miranda) and hanging at home on a cool, rainy, overcast day. Had Carl's leg been in better shape, I would be juggling the children and taking Carl in for Chemotherapy today.

I think I am kind of exhausted, worn out, tired. I think maybe we all are. It's kind of a weird way to start summer.

Friday, June 4, 2010

Update into June.

Monday, May 24th, 2010 Carl had outpatient chemotherapy at Froedtert's Cancer Center.

Carl felt well after the chemo, and he went to work on Tuesday, Wednesday and Thursday. The Dr. indicated that for many patients the full impact of the chemo doesn't occur until about 48 to 72 hours after the treatment. Well, this chemo had a "Thursday" impact. Carl came home from work on Thursday, May 27, 2010, laid down and fell asleep in his work clothes. He fell asleep from about 5:30 PM until later on Friday morning. I tried to encourage him to drink water at around 10:00 PM Thursday, or even change into PJ's, but he wasn't interested.

Friday, May 28, 2010, Carl felt good enough that he wanted to go to work, (he was at least well rested!), so he did. The children had a half day of school, so he probably wouldn't have had a restful afternoon, anyway. The weekend came, children went here and there (Tom to baseball, the other 3 to a Nerf game at the church, etc.)

On Saturday May 29, 2010, WE ALL SLEPT IN! (Yeah!) A quiet Saturday Morning! Carl was feeling well and he made a pancakes for brunch around noon. Saturday afternoon, Carl and Nathan, Miranda and I went to the Family Kite Festival held at the Milwaukee Lakefront Veterans Park. I rounded up some kites we've had for years, and we went and flew them. We ended Saturday with a dinner at Beni Hana's restaurant to celebrate our upcoming wedding anniversary. (Tom and Anthony wanted to stay home, so we let them.)

Sunday May 30, 2010, we had a rare second day of sleeping in. The kite festival was so fun Saturday that we decided to go again on Sunday, this time with all of the children. The weather was windy and warm, perfect for kite flying. We had great weather this weekend! All of the children enjoyed the kite festival and milk shakes and a picnic at the lakefront. Sunday night two children went to sleepovers, and one child had a friend sleep over in a tent, etc. The mad desire of the children to start summer now before school is out was probably not the smartest thing we could have agreed to, but things fared well and the children had a good time. (I didn't get much sleep, though. A storm on Monday early in the AM woke me up worried about the kids in tents scattered across Mequon.)

Monday May 31, 2010, we had a Memorial Day cookout with relatives, and Tuesday rolled around.

Carl's chemotherapy sessions this round consist of Chemotherapy on Day 1, (May 24) and then chemotherapy on Day 8 (a week later). Because of the holiday, Carl went in for chemo on Day 9 June 1. So, on Tuesday June 1, 2010 we got the children off to school and headed to the Cancer center day hospital.

Carl had blood work done first, at the Cancer Center Lab, 2nd floor, somewhere before 9:00 AM. (We had them access Carl's port there, so that there wouldn't be a hour delay up in the day hospital). The blood work results are needed before you start chemotherapy, and the tests take a minimum of one hour. Once you check in at the Day Hospital reception desk, they wait for the blood results, wait for approval from the Docs of the blood results, and then begin the process of "pulling" your medicines from the pharmacy. This means that there is another wait, especially since some of the medicines have to be defrosted. You wait until the medicines are available, a nurse is available, and the room is available. Once you get the room and drugs, the chemo takes about 3 hours and we were out before 3:00 PM Tuesday afternoon.

Then we came home, and gathered the children and ran them around to all the places they needed to go. Piano, picnics, after school activities. It sounds busy but it sure beat Carl doing a week of inpatient chemo starting May 24, 2010.

Wednesday, June 2, 2010, Carl felt well and went to work. Then I took him to the Day hospital for a shot of Neulasta. Weekday Neulasta shots are different then weekend ones. On weekdays, you have to do the waiting routine for the pharmacy. The injection itself, (into the muscle) is really quick - the nurses don't even have to find a vein. Carl wants to do the shot himself next time, to save time. If only.

Thursday, June 3, 2010, Carl went in to work. He was getting quite tired Thursday night, so he agreed (reluctantly) to let me drive him to work on Friday.

Friday, June 4, 2010, I drove Carl to work, and later we had a nice lunch together. The chemotherapy drugs were affecting Carl's taste buds, but he ate with a good appetite (to shore up energy, he said.) He finished up his day at work, but when I picked him up Friday after work Carl was really beginning to flag. THANK GOODNESS the weekend is here. Carl went straight to bed, but within an hour he agreed to take a pain pill, and later he took some Motrin. One of the side effect of Neulasta is that is can make your bones ache. Carl said his bones ache, his fingers and toes and jaw aches. As far as I know, this is the first time the Neulasta shot had this kind of impact, but then again, it could also be the new chemo drugs he got on Tuesday. Oh well, every day is an adventure....

On another note, remember when we were joking that we weren't sure if the radiation machine was turned on for Carl's leg radiation? Well, the radiation continues to be active for weeks after radiation is over, and Carl now has quite the nasty looking rash, a side effect of radiation, along the path that the radiation beam took. It hurts him were his knee bends, so that is now something else to wonder about.

We are trying to say some "healing prayers" that various friends gave us. I think maybe I'll share some of them soon.

Monday, May 24, 2010

Today, a Day like any other Day

Well, today pretty much sucked.

It's not really like Carl and I were looking forward to Carl's chemotherapy. I was just glad it wasn't going to be 5 days inpatient chemotherapy. I figured that one day is better then 100+ hours in the same small room, staring at a wall. But Carl has to go through it, get the needle sticks, taste the bad tastes, and feel all the weird sensations that a person feels when they are trying to poison lots of cells in your body. Carl is the person for whom it "sucks the most". I was trying to be pleasant, but perhaps I appeared too cheerful this Monday morning. Carl made cracks about me getting ready to go, and then was clearing out his car and trying to change the tires. (Literally, I believe this morning, Carl was planning on taking the snow tires off his car, No Lie.)

When you are mad at situations beyond your control [Ex. 1: You have cancer; Ex 2: Your children are not preforming academically the way you would like; Ex. 3: 60-100% of the people you live with are disorganized, including you; Ex. 4: You can't find your torque wrench], but bottling it up, why not be grumpy at the person who has been with you at all of your low and sucky times in the last 20+ years, and who is probably the cause of some of those times, and who you most associate with all of those low and sucky times anyway, because, well, she is always around. [Why won't she just GO AWAY. And when she does GO AWAY, things don't get better, and that's her fault to...] (She might be around during some of the better times as well, but that is INCIDENTAL.) (Accidental?)

I really feel that I am blameless today, and that Saint Carl was gunning for a fight. There can be no doubt that in our relationship, Carl is the more easygoing and giving person. Today, though, I was being calm and patient, (that's easy once the four children are off to school), Carl was trying to provoke me. And he got grumpier when I didn't let him. I probably did the worst sin of all - I tried to be pleasant because I FEEL BAD that Carl has to go through chemotherapy today.

Here is an example of Carl trying to make me irritable. When we finally leave the Cancer Center, Carl and I get in the car. Before I even back the car out, I put the clutch in, and Carl is like "Oh My God, I should drive home." Hey, like I TAUGHT Carl to drive stick shift, in MY CAR, 20+ years ago. And, like, if MOITRIN and BENEDRYL say don't operate heavy machinery, (a car) after 2 little pills, then I think, PERHAPS, full dosages of intravenous ondancetron, dexamethazone, and the fun little poison call GEMZAR might have similar restrictions.

Carl's chemotherapy appointment was scheduled for 11:30. When we arrived, they gave us a pager and told us that they wouldn't be calling us for at least 40 minutes. We headed down to the Froedtert cafeteria and ate lunch. Someone wonderful had given us a gift card to the lunchroom, which we have slowly been using. Lunch was actually ok, though we ate fast because of the pager. Sometime after 12:15 we are in the room.

I've mentioned before that Carl has a port for IV's, and that sometimes (frequently) the nurse will have a difficult time getting blood to draw back into the line, which they need to do before they can start the IV. So, of course, today there was no chance that we would get the blood to draw back, and the nurse did not seem to inspire us with confidence once she experienced this. The nurse used saline, then heparin, then more saline, and then finally got a TPA dose defrosted and used that to get the line cleared. Using TPA means a one hour wait. Carl's IV chemotherapy started at 1:50, when the scheduled time was 11:30. So, this means, the two hour chemo will now end after the children are out of school. Whatever. I make phone arrangements.

So eventually I get Carl home, and I get the kids home. But now I am getting a bit annoyed. So, when you are mad at situations beyond your control [Ex. 1: Your spouse has cancer; Ex 2: Your children are not preforming academically the way you would like; Ex. 3: 60-100% of the people you live with are disorganised, including you], but bottling it up, why not be grumpy at the children who have caused, and continue to cause some of your recent low and sucky times in the short span of their lifetime.

Then Tom goes for an unauthorized bike ride on the highway. Nathan and Mir and I go out to find Tom, because someone should. We can't split up because only I have a cell phone, Carl misplaced his, and he always shuts it off so you can't call it to find it. (And besides, I really don't want Nathan and Mir to go along the highway without me.) We find Tom, send him home, but now Mir and Nathan want a fun bikeride. The children stopped to play, and I was looping back, and they don't even notice that I take a spill on my bike, crashing in a muddy ditch. Carl mows the lawn in anger because he knows I won't think it's a great idea after chemo, and he is still trying to irritate me. The children have a huge water fight with the hose and drag hundreds of grass clippings, maple tree helicopters and water into the house. Then Carl keeps the kids up past their bedtime trying to find summer clothing that fits, even though I think he should go to sleep. Finally, at the end of the night, the kids throw the wet laundry down the laundry shoot mixed in with the dry laundry, so now that laundry could rot and mold and smell. (They are supposed to leave wet stuff in the bathtub, or better yet, hang it in the tub to dry 1st, before getting it into the laundry shoot.)

I don't make this stuff up. I am not that creative.

This will lead me to another post sometime, the beauty of the word "whatever."

Thursday, May 20, 2010

Banquets, Confirmation, Chemotherapy

Well, it felt great NOT going to Froedtert for 2 days, Tuesday May 11 and Wednesday May 12, 2010; after going for 16 consecutive weekdays. It practically felt like normal family living, or a mini vacation even. :)

Thursday May 13, 2010, Carl went in for blood work and to meet with our very nice Oncologist. The next steps were determined - a pet scan and then chemotherapy.

Friday, May 14, 2010, Nathan had his 6th grade Medieval banquet, (which we attended in costume, just as we did in Anthony and Tom's 6th grade year).
Mequon Steffen Middle School Medieval Banquet 2010

Carl didn't shave for weeks so he could look medieval. (Thankfully, he did bathe, so he did not smell medieval.)

He went back to work after the banquet, and shaved. I didn't immediately notice that Carl had shaved, but as you can see, Carl is definitely no longer bald.



Over the weekend, we celebrated Anthony's confirmation at church on May 16, 2010.

Monday May 17, 2010, Carl went in for a pet scan. I haven't seen the results, but apparently the scan shows no metabolic activity in spots outside of the leg. That is a good result, it means the tumor cells are not trying to grow, (I think). I'll describe pet scans in another post.

We then had a busy week with the family : Miranda's band concert on Tuesday; Anthony's band concert on Thursday; Tom's first baseball practice of the year on Friday. Carl has been continuing to work, and he is feeling fine and keeps up with the rest of us. (Which can be a hectic pace towards the end of the school year.) Carl does go to bed much earlier, and gets more sleep, and we are working on eating healthier. (More in a different post.)

The plan now is for Carl to start a round of Chemotherapy on Monday, May 24, 2010.

Carl could resume the 5 day inpatient chemotherapy, using the ifosomide & adriomycin combination. However, since the weather is so wonderful, and the cells seem to be behaving, The Dr's are going to use a second string of chemotherapy drugs so that Carl won't have to stay overnight at the hospital. Someday in 2010 Carl will get more ifosomide & adriomycin; but we can "save" those treatments for later in the year.

Part of the reasoning is this: The body can only tolerate so much adriomycin. Basically, you can have about 6 doses of this wonderful drug, and then your heart says skip it and you die. OK, that's not exactly technical. The body seems to tolerate about 6 doses. After the 6th dose your chance of cardiac arrest is about 2%. If you go for a seventh dose, your chances of cardiac arrest is about 18%, so they generally try not to give you more then 6 doses. Then you have to look around for other drugs to use to poison the tumor. So far Carl has had 3 doses of adriomycin, and the tumor seems to be responding - which means the tumor appears to be stopping it's metabolic activity - and not growing. We could use up our doses of the big guns (the Adriomycin), while the weather is great, (getting these doses over summer, with inpatient chemo); and then go to second string drugs, or take the second string drugs now and Carl will be able to "participate" in summer.

I hope we are doing the right thing, I've prayed on it and it seems to be the reasonable route. Things seem to be going well, and I thank you for your continued prayers. We are both looking forward to a "light" chemotherapy schedule, instead of dreading an inpatient chemo week.

Enjoy the week and the wonderful weather, we hope to!

Tuesday, May 11, 2010

Leg Radiation is over.

Yesterday, Monday, May 10, 2010 was Carl's last day of radiation to his left leg. He got his first treatment of 15 on Tuesday April 20. Today is the first weekday in a long time that Carl has not gone into Froedtert. Yeah!

Here are some photos from leg radiation. They gave Carl a dot tattoo, and taped some markers on his leg with some very good adhesive. (Click on any image to see it larger.)

The machine above is the machine they use for radiation with a CT simulation. The circular part will do a CT simulation to check that the right area is getting zapped. Most days the radiation treatment was done on a machine that looks like the one in my post "What Radiation looks like."


Here is the form they custom made to hold Carl's leg in place for each radiation treatment.


This photo shows the path that the radiation machine followed. The area getting radiation was quite large, and the dose was high, which was one reason I was worried about possible side-effects. But radiation has gone very well, with almost no side effects as far as I can tell. I even joked yesterday to Carl, maybe we went through this entire procedure for 15 days and the machine went through the motions, but they forgot to turn the beam on.

Possible side effects ranging from sun-burned like skin, swelling, significant pain, etc. seemed to not happen. Carl is of course tired often, and sleeps way more then he ever used to, but he isn't complaining of major fatigue like I thought might happen. What a relief. I will thank God and all of the many prayers for this.

(
Yesterday was one of the first days that Carl said he could feel an impact on his leg. I encouraged him to take a pain pill, but he didn't. It didn't hurt, per se, according to Carl.)

The radiation will continue to damage the tumor cells for several more weeks. The odds that all the tumor cells in the leg will be killed are way under 20% (my number, not the Doctors), but I am hoping anyway. More rounds of chemotherapy will be starting within the next month, but for now we get a small break :)