Wednesday, August 25, 2010

School and how to help a cancer patient

All children have officially returned to school today and as I type this, I am sitting in perfect and peace and tranquility! Emily started the first grade! She has been excited for WEEKS and was completely and totally consumed by getting ready. We went clothes shopping last week and school supply shopping as well. She rummaged through bags of supplies asking what was hers and also trying to take things from the high schoolers as if she needed a composition book and college ruled paper. But, she and I spent Monday night packing her backpack, making her lunch and choosing her outfit for the first day. In the morning, she was too excited to eat and absolutely unfocused as to what she should do first. Even though school didn't start until 8:30, she insisted that we leave 40 minutes before the bell and so we stood in the parking lot listening to the crickets until the bell rang and she was ushered off to class. Today was not quite so smooth as she has been throwing major temper tantrums and has been absolutely impossible to deal with. Though she is excited about school, she isn't used to her routine. Yes, I understand that transitions are hard for her but this morning, I was ready to drive her to her dads and say HERE! It took her 30 minutes to decide what to wear. I tried to have her do this last night but she was absolutely not going to budge on the issue as she wanted to wear a specific pair of jeans and we couldn't find them. So it was a bloody battle this morning. She refused to brush her hair, brush her teeth, pack her lunch in her backpack, put on shoes and when we did put on the shoes, she didn't like the way I tied them and pulled off her socks and shoes and threw them or eat her breakfast. It was not fun. Emily has ODD, oppositional defiant disorder. This along with her ADHD, means I deal with periods of temper tantrums that would try the patience of God, defiance to the Nth degree as she absolutely REFUSES to do anything and as she cannot calm herself down, she throws things, punches, kicks, and slaps. I will admit I have lost patience with her and the past 24 hours has been extremely difficult for all of us. It will die down as she gets used to the routine and I have failed time and time again at restoring order and control when she is out of control. It's hard NOT to react and extremely difficult to be proactive. We try but we are human.
Physiology started up on Monday night. I HATE the section I'm in. MW lecture, Tuesday lab. YUCK! I would prefer to have the lab before or after the lecture period on MW but nobody wanted this section and when the teacher asked who would like to switch, only those with Tuesday lab stood up there. Hence the reason it was the only section open when I registered. But, at least I got the class and my instructor stated if there were conflicts, she would allow us to switch a section for the week. My Oncology appointments on Tuesdays are the only conflict at this time as I still am unemployed.

A few days ago, I had a conversation with a relative. As a cancer patient, I hate conversations like this one. If you are a cancer patient or relative of a cancer patient, avoid this please.
Relative - "So you think you might have surgery in December?"
Me- "Yes, that is the plan provided that there is nothing new on this next scan."
Relative - "What are you going to do about the kids?"
Me- "I haven't figured that out yet."
Relative - "Are you still looking for a job?"
Me- "Yes, haven't found anything though"
Relative- "What are you going to tell an employer about the surgery? Is it because of that that you can't find one?"
Me- "I don't know. I usually don't mention my medical issues in an interview and I have no idea what is going to happen or even IF there is going to be surgery."
Relative - "Well what are you going to do about Unemployment? What if you have surgery and you can't collect any? How are you going to pay your bills?"
Me- "I don't know."
Relative - "Well what are you going to do about the house then?"
Me- "I don't know."
Relative - "Well don't you think you better figure that out."
Me - "Well obviously, I'm going to lose the house to a foreclosure an we're all going to live in my van." (Yes, I did say this)

By this time, I wanted to hang myself. I was increasingly frustrated because though this is a person that is local, I was never asked what she could do, what SMALL thing that could be done to help me out. After I collected myself, I said, "I don't know what is going to happen. I can't plan for something that may or may not happen in 3 months without the scan, without a surgical date, without a battle plan. But you CAN help me by telling people about my book and DVD store. That would help." She said she'd pass the info onto her family and friends.
I went to bed feeling very uneasy. So many loose ends to tie and I know she's well meaning but "What are you going to do?" is not a helpful question. If there is someone in your neighborhood going through something like this, here is how you can help.
-- Bring a meal. Cancer patients and anyone going through chronic illness get tired. Dr. appointments take time, LOTS of time. I know even though I feel healthy, each Oncology appointment takes a minimum of 6 hours before I'm done with the labs, the waiting and the traffic. Medications cause nausea and fatigue. Being around food when nauseous is very difficult. Meals help a lot.
-- As one of my relatives dishes on the condition of my house a lot, see above. Even offering to weed a garden is a HUGE help as is helping with any household chore.
-- If there are children involved, offer to take them somewhere with your kids. Speaking for my kids only, there are a lot of unresolved issues. I have 2 very scared children who prefer to deny the existence of the disease because it's too hard for them to look at. Kids with a parent who is ill live with constant fear that that parent will die. The feel helpless, powerless, fearful and apprehensive for the future. As a single mom, who is going to be there for the kids is the NUMBER 1 concern. I go to appointments and things by myself. IF this surgery takes place, I need to know they are safe and cared for while I can't do it. Any patient, irregardless if they have a husband or other family member will tell you that the kids are their main priority. If there is someone in your neighborhood with these issues, that is the number one thing that can be done to help them.
-- Don't avoid talking about the disease. We want to talk about it. It's OK if you don't understand 100% what we are going through. An ear is good enough and we don't expect you to understand.
-- Don't give us YOUR fear or back off because of you. Cancer is not contagious. Most don't like to hear unpleasant news. It brings a person closer to facing their own mortality and we face that daily and we figure out how to live with that. Your fears on top of our own is a big load to carry.
-- Never ever ever imply, hint, or outright say that the person with the illness is a burden. It is difficult enough to have to ask for help. We don't need to be reminded what a big encroachment it is on your life. We didn't ask to be sick. It's not our fault. Cancer is not a disease that affects just ONE person, it affects everyone that knows that person, cares about that person or is related to that person. That is the sad, sad, reality. We are bombarded by societal messages daily that if you are sick, you are weak, you are useless, you are an expense on society. We don't need to hear it from you. This can happen to ANYONE. The value of life, any life, irregardless of disease, cannot be measured or thought of on monetary terms. No one is a burden because they are sick.

Now for the shameless plug:
The biggest help to me right now is to keep my web businesses in mind when you need anything. If there is a product you are looking for, please consider ordering from me. My primary focus is books and DVD's but I can also provide links to household products, electronics, games, music, anything. Just ask :)
My websites are

Shameless plug 2,
please help us generate some awareness for our cause. All it takes is a click on the link and a click on "Vote"

Sunday, August 22, 2010

We have a new contest link...

We were third in causes and 7th overall the last time which is awesome! But, we're trying it again! Thanks to everyone that voted. I hope you have a few clicks left in you.

Monday, August 16, 2010

More odds and ends and bits and pieces..

Last Tuesday, I took my tri-weekly trip to the Oncologist to tell him my decision regarding the clinical trial. I changed my mind several times with my heart telling me to drop it and my head telling me not to. It is never easy getting the two to agree and they bicker constantly like my 3 kids. But heart and head were able to come up with a sensible compromise. The end game is surgery but I also want to finish Physiology and submit my Nursing school application for the Fall 2011 semester. Therefore, I decided to stay on the trial until the results of the September scan. If there is nothing new and it's just the same old little pests that we already know about, I will drop the trial and prepare for surgery in December. If there is something new, I will go back on chemo and re-stabilize and then will have them removed...eventually. I am praying for the first option as $1600 of medical debt was transferred from the U of C to a collection agency. SIGH... I pay them a little every month. I went to a finance person to see if I could negotiate that they just take what insurance gives them. I was handed a stack of papers that asked for all my savings account balances and my W-2's from last year. Needless to say, I didn't even bother to fill that out. Last year, I was working and this years W-2 with my paychecks and severance won't help me either. OK, enough whining. This too shall pass. For now, I am thankful that all my other bills are paid. I am also thankful that Brivanib may be a viable option for those of you with MPNST as it heads into phase 3. My time on the trial will be documented and hopefully has helped the Sarcoma community with one more bullet in the arsenal. Lord knows, we need that!

Thanks to all who have been voting for our Nascar design. We are #3 in causes!!!! THis is such a great accomplishment. Vote on every computer you have.
Thank you for your support on this..

Lastly, I opened a blog for my sites:
My Book Blog
AND a facebook group. I am now sorta wishing I had an advertising course and took one course in Java and web design but I'm a quick learner and will be figuring things out as I go along.
Thanks for tuning in. School will be starting for Em on the 24th, for Kris and Cas on the 25th and for me on the 23rd. I am feeling good, keeping busy, and trying to look forward.

Monday, August 09, 2010

I'm back from the great beyond known as Wisconsin and my few day trip to our little cabin in the woods. The weather was beautiful albeit a little hot and muggy for the first few days and the kids and I were able to enjoy the beach and the scenery associated with the deep woods in the Wisconsin state forest. Emily had a ball and spent the entire time in high gear and was quite the big pest on the last day as we wound things down, cleaned up and drove home. Our Wisconsin cabin is a great place to read which leads me into why I asked the book and movie question (sit back. this may be long but there is a method to my madness). My mother was an English teacher, something I thought odd as my mother was an immigrant from Europe who like many immigrants in the late 40's and 50's were escaping Communism and Nazism. English was not her native language. My mother was Czechoslovakian and she, my aunt and grandparents walked 20 miles through Czech forest and spent two years in a displaced persons camp in Munich before they made their way to the States. As my mom had a heart condition and had to avoid activities with a lot of physical activity, she read books, lots and lots and lots of books. Reading was her outlet and in our early days, my mother required that we read at least 25 pages a day. The first book she forced me read was "Pippi Longstocking". Did I enjoy the book? NO! But, I did become a reader eventually and every two weeks, my mom dropped us kids off at the library and I chose my stack of novels. I read every night before bed and on every vacation to the cabin and of course, other places. I majored in two subjects in college. My main major was Psychology but I took English courses for fun and to force me to find time to read. I added it as a second major my Sophomore year. Not every classic I read tickled my imagination. I suffered through "The Crying of Lot 49" and "The House of Seven Gables." But, I loved, loved, loved Toni Morrison's "Song of Solomon" and Daphne Dumaurier's "Rebecca." While "Wuthering Heights" may have made most of the guys in my class gag, I couldn't put it down. These three novels are my most favorite of all time. Did they change my viewpoint? Not really but I was so engrossed in them that the rest of the world melted away and I became part of the world these authors crafted. George Orwell's "1984" and "Animal Farm" did help shape my world view. "The Lord of the Flies" spawned a great debate on the nature of man and Steinbeck's "Winter of our Discontent" illustrated so well that sometimes people are not who they seem to be as it follows Ethan's descent into moral bankruptcy with actions that appear to be well intentioned.

I am not the kind of moviegoer in line for a blockbuster on day 1. You will never seem me standing in line for hours for a ticket to "Harry Potter." I prefer to see them after the excitement has died down and usually on DVD. I love anything Star Wars and Indiana Jones (except that last one. I don't even count that one). I loved "Shawshank Redemption," "The Usual Suspects," and "A Fish Called Wanda" which I maintain is the funniest movie EVER. "Dead Man Walking" and "Schindler's List" rocked my world. I can watch "The Sound of Music" over and over and over again and never get tired of it. What is not to like about "The Music Man"? And when it comes to guilty pleasures, the old movie "Meatballs" and of course "Animal House" fit the bill. "Jaws" still makes me afraid to go in the water. And, my favorite Disney movie is "Toy Story", all 3 of them. I think I was more excited about "Toy Story 3" than the kids but I dragged them along anyway.

So... now that you've suffered through my diatribe about books and film, I decided to open my own online book store and DVD store. I wanted some reader recommendations to help with the launch and the blog I am trying to write about book and movies and the ones that made the biggest impacts. The sites are located at these web addresses

If you buy books and movies online, please consider using my web portals and if you don't but have friends that do, please let them know about them. I plan on donating about 10% of proceeds to Pediatric and Adult Sarcoma research which is a cause I care tremendously about and if you read something or see a movie that is so good that it deserves a mention, please let me know and I will read, see and promote or write a guest review and I'll publish it. My links are also listed on the right margin under my websites.

While on the subject of Sarcoma Research, we are trying to promote awareness, via Nascar once again. We did not finish the last race in the top 10 but we were so close we decided to try once more. You can vote for our Nascar design at

Winning this design contest could mean awareness. Awareness could = research dollars. If you have access to more than one computer, you can vote more than once every day. Thank you so much and thank you for your support in advance.