Wednesday, July 29, 2009

Vacation photos

From the top:
THe Root River in Southern MN along scenic byway 16
The trail leading to our cabin
Emily being Emily
The Black River in Wisconsin about a mile from our cabin
A Mississippi Bald Eagle
The Lacrosse Queen, the paddleboat we rode on our Great River tour.
My daughter took these photos as I have not uploaded mine yet. She did well!
How I miss it! This area of Wisconsin passed the "Could Kathy live here?" test hands down. Cheap taxes. Good housing prices, one hour from the Mayo Clinic. Close to the University of Wisconsin. Beautiful surroundings. Simpler living.

Tuesday, July 28, 2009

Eye on the Sparrow

Yesterday, Cassie called me from outside our front porch. Yes, I'm aware she could have come in and spoken to me from the foyer but she's 14, armed with a cell phone and knows how to use it. She wanted me to come outside right away! So, I finished what I was doing and went outside to see what the commotion was about. Cassie's friend, Angela, was holding a baby sparrow in her hands that they had found hopping around on the ground. As it was unable to fly away, Cassie and her friends, picked up the little bird and brought it here hoping that I would know what to do. I told her that the bird could no longer be released to its own devices and suggested she call a local Animal Rescue to see if anything could be done. We looked on the internet and found a number and called it. But this particular rescue was unable to help their little bird friend so Cassie and Angela visited a Vet's office and the office made a call to a local wildlife shelter who said they would look at the bird to see if there was anything they could do but they were now closed for the night and suggested Cassie bring the bird in the morning. The girls then filled a basket with a towel to make the sparrow comfortable and provided it with water and seeds and proceeded to care for it through the night. The little thing was surprisingly unfazed by 3 ogling teenagers and a hyperactive toddler showering it with attention and it twittered and chirped like he was still in his tree. This morning, Angela's mother took the girls to the wildlife rescue. They took him in but told Cassie that they usually do not take in house sparrows. This one seemed to touch their heart as our little bird friend was born without eyes and there was no way he could ever be released to nature but they promised to make him comfortable and try to feed him and see what happened. However, they told Cassie he may have two weeks at best because he was still so young and needed his mom to care for him.
It was good that Cassie showed this little bird such compassion and that even though it's odds are not good, someone is now caring for it and who knows? Maybe this little guy will become someone's pet. "So do not be afraid; you are of more value than many sparrows." Matthew 10:29-31

Monday, July 27, 2009

Thus ends Sarcoma Awareness Week. I tried to do my little bit and hopefully all our little bits will result in a largess. The re-entry into my mundane life has not been smooth. I enjoyed my time away just a little bit too much and now I feel out of step and dissatisfied. I've had trouble focusing and concentration on my job has been difficult. I have been struggling with major job DISSATISFACTION and guilt for feeling dissatisfied when I should be grateful but right now more than anything, I want to move into a career that makes an impact. Because my company is Outsourcing crazy and has moved many many jobs overseas, I work in an atmosphere that is extremely devaluing and I having trouble with that reality. I want to work in a career and a company where I mean something and can mean something to a customer or patient. Instead, I'm living under an axe and I have since 2004 when my company laid off 30,000 American workers and sent those jobs to Europe, China and the Philippines. Prior to vacation, I was working on a new, very large account for a major oil company that is based overseas and my job required ordering network equipment and upgrades. To make a long story short, all the ordering needed to be done manually, meaning I literally emailed purchase orders using Excel as opposed to having everything done nice and neatly in our various tools. This manual process added many nuances to this network solution and a lot of rework and a lot of late nights in front of the computer. I literally worked from sun up to sundown with little breaks during the day to take Emmie to daycare and pick her up, sometimes grocery shop or eat something but the 15 hours days were getting to me, coupled with being in treatment and driving back and forth to the U of C, dealing with scans, scanxiety, medicine side effects, uncertainty, an ADHD child with Oppositional Defiant tendencies who also needs Dr appt's and meds, an 8th grade graduation, a 16 year old, bills, bills, bills, and more bills, a messy house that can use some repairs, and a part time job to boot, I was more than happy to leave it all behind for 10 days and pretend it didn't exist. I was happy. I felt free and unburdened. And then I returned home and am right back where I started but with a better tan. I can hardly WAIT to see what my midyear review will hold for me but I'm expecting that I will not be happy with it and as I'm sitting here wondering why I bothered to put in so many hours, I can only hope that I did not waste my time. I have been feeling just a little burnt. To really add insult to injury, I had 3 Dr. appt's last week. One was for my girls. Both needed their school physicals and each were required to get at least 3 shots. Two appointments were for me. My trek to the U of C resulted in more disappointment. Apparently, I need one more scan. The three month scan schedule doesn't start until week 36, not week 24. I am resenting the script I have for the scan in a big way. In addition, due to a misunderstanding and miscommunication, I waited over two hours in the waiting room to find out that I need another scan. The Dr. and trial nurse thought that they had rescheduled my appt for next week and they left for the day. When the waiting room was empty and everyone had left for the day, a nurse asked me who I was waiting to see. After checking the computer and making a few phone calls, she had me talk to the trial nurse on the phone. BAH! That was 6 hours I can't get back. So, now that I'm done whining, I hope to have my attitude adjusted soon. In the meantime, I'm procrastinating making the scan appointment. Take THAT STUPID SCAN!!
On a positive note, the kids and I had a great time at the church picnic. We could not have had more beautiful weather. It was sunny. It was not humid. My kids had their fill of hamburgers, chips, soda, cotton candy, snow cones, rootbeer floats, and roasted corn on the cob and came home high on sugar and crippled with tummy aches. Emily was surprisingly well behaved in church. I was feeling brave as yesterday was the first time I have ever taken her. We sat towards the back so we could make a quick exit if we needed to but Emily sat and listened. She tried to sing the hymms and the psalms and it was so cute I couldn't help but smile. Perhaps Jesus calms her hyperactive little soul. Who knows? I took it and ran with it and made sure she knew how proud of her I was for sitting through it and rewarded her with the moonwalk. She loved it and was moonwalking pretty much all afternoon. Cassie was scoping guys. Kris was waiting to dunk the Pastor in the dunking booth and successfully completed his goal. It was all good and though the parish tried, our Pastor survived the dunking booth and was not drowned. All is well.

Saturday, July 18, 2009

Sarcoma Awareness Week

I am back from my trip "out of here" and have been in mourning for two days. During my 10 days away, I spent lazy days on the beach reading appropriate beach trash fare, spent evenings reading, walking, or sitting by a fire, dined at local "supper clubs", took a road trip to LaCrosse, Wis, road a paddle boat on the Mississippi River, explored Southern MN, explored a cave, learned about the Amish, drove Scenic Byway 16 through Bluff country, went out for ice cream with the kids, and ignored most media except music. Now I'm back and reality has been difficult to take. This week is Sarcoma Awareness Week. Since diagnosis a little over 3 years ago, I've had many opportunities to talk about Sarcoma with others. As a woman, I've been educated, sometimes OVERLY educated about breast cancer, about Ovarian cancer, about Cervical cancer. Like any good woman, I went to my exams, had my smears and considered myself healthy. Who knew a little tiny bump on my thigh could be cancer? When I noticed it, it frankly didn't occur to me that this tiny dime sized bump could be anything serious and in my many trips to the Dr., I never pointed it out. If I, a fairly educated person, could overlook this, it occurred to me that others could too. I wear my Sarcoma Foundation of America awareness band. I wear the yellow awareness pin with a sunflower from the Sarcoma Alliance and to anyone who asks, I tell them about this disease and the challenges that the patients and caregivers have above the norms that come with the cancer experience including the lack of treatment options, the lack of knowledgeable Dr.'s. the reliance on experimental drugs and clinical trials, and the few centers equipped to handle this disease. I can't do any great big things but all the little things that we all do make a huge difference. My little battle plan is:
1) Keep my Facebook status Sarcoma related for the week. I have 75 friends. That is 75 people somewhat newly aware.
2) Write an email to all my friends about Sarcoma and encourage them to pass it on to others. It seemed to work with Inflammatory Breast Cancer. Why not Sarcoma?
3) Make a small donation in honor and memory of all our Sarcoma friends who have lost their lives this year, to a Sarcoma related charity such as the Jennifer Hunter Yates Foundation, The Liddy Shriver Sarcoma Initiative, or the Sarcoma Foundation of America.
4) Keep talking, keep writing, keep posting the journey. Others may find me. Others may not feel so alone as they battle.

My hopes are that all these little things we do will add up to a cure so we don't lose more of our children, our family or our friends. Fight the good fight everyone!

Friday, July 03, 2009

I was reading Card Blue's blog regarding Vicodin and Percoset and the great Acetominophan debate as chronicled in the NY Times. A Federal Advisory board wants to ban these drugs because a few people a year and it was very few, abuse the drug by taking too much and damage their liver. Perhaps my Libertarianism is just shining through here but has the Federal Advisory board ever been in an Infusion Therapy Room? Have they ever seen what a cancer patient on VAC or MAID protocols looks like? Chemo drugs can potentially destroy the heart, the liver, the kidneys, the immune system and that is considered to be "Good Medicine." As we had a mother in MN recently court ordered to infuse her son with these drugs and abandon the natural, holistic, protocol that she wanted to follow to treat her son's cancer, I am more convinced that more government is just not a good thing. That we, as patients, as people, have the right to make decisions good or bad. Life never came with a guarantee of safety and we, as individuals, were given a mind, a brain, and a reasonable amount of intellect and our lives do belong to us. As Clint Eastwood quipped in Unforgiven, "life is all we have and all we're ever gonna have." Put a warning label on the damn bottle of tylenol and let people make their own decisions. The Constitution never guaranteed us safety. It does guarantee liberty and liberty is the freedom to do something stupid as much as it is the freedom to do something smart. There are just some things, such as people's ability to really do dumb things, that we just can't legislate. We can only hope that my neighbors dumb mistake, does not harm me. As I'm a cancer patient, I know more than anyone that there is no guarantee of anything. Life is uncertain. It is our job to make the most of the time we have as we never know how much time is in the hourglass. For the next couple weeks, I'll be making the most of it by abadoning the city and heading to the woods. Up there, I have no phone, no computer, no TV. There is only music, only trees, only bugs...lots of those, only beach, only quiet. There is no President. There is no Congress. There is no North Korea aiming missles at Hawaii. There's nothing but the hog report and news about where the good fishing is. I will arrive packed with my nutritional tools, a juicer, a hand held mixer, and all sorts of organic goodies that are just not too easy to find in a meat and potatoes area. I will arrive with a few good books to read on the beach and on our porch swing. I will arrive with a nice bottle of red wine to sip at our firepit. I will leave behind Big BOx Mart, Ma Bell and Cancer.

Have a Happy 4th of July and please don't take that Nyquil with a couple extra Tylenol....unless of course you want to.
I'll see you all when I get back, hopefully armed with some beautiful pictures of God's country.

Wednesday, July 01, 2009

Brivanib Week 24

Stability!!! On the PLACEBO!!!! for 6 weeks!!!!!

Happy news!! I'm still dancing!!!! I love exclamation points!!!!!!!!!!!!!!!

I am going on a vacation next week to our Summer home in the woods. I am happy that I will be going to the cabin without the Brivanib so I can enjoy with a clear head, no fatigue, no light headed feeling other than from my Kombucha :)

My Dr. again left me with instructions to keep doing what I am doing. He can bet on it!!