30 YEARS??? OH YEA!

Hello everyone:

I just thought I'd share that May 18, 2012 marks 30 years since my Osteosarcoma diagnosis! Starting to feel a lil old here! LOL Sending out love to those who went through it with me, and by all counts saved my life. Dr. Norman Jaffe...my oncologist. Love you to the moon! I can never thank you enough! Words could never cover it! The late Dr. John Murray for his amazing surgical skills which saved my left leg! You may be gone, but you will never be forgotten! To all the wonderful nurses who put up with me, and maybe even loved me a lil. You know who you are, and I loved you too! :) To the lifelong friends I made along the way...especially my Arkansas family...we made it through the rain together, and we will always rise above whatever comes our way! :) And to the one who I could have never done it without. You are the strongest woman I have ever known next to your own mother who made us all the rock solid women we will always be! Steel Magnolias! And I will always be your TLS. :) I love you Mom!

To those of you still fighting...stay strong...keep the faith...and this day will come for you too. Shine on! :)

Got married! :)

Hi Everyone!

God is great, and I am so blessed! Perhaps you noticed that my surname has changed. On February 19th I married my sweetheart Matt Nelsen. He's such a wonderful guy, and I am so lucky to have him!

On another note that pertains more to this blog...next May marks 30 years since I was diagnosed with Osteosarcoma! Still trying to soak it in that it's been that long! I've come a long way since then. I'm into my 2nd year as an Academic Advisor at University of Houston...the career I went to college 8 years to achieve. And I finally found me a good man and made him my husband. I could not ask for more. :) Now how should I commemorate my 30 year milestone? Throw me some ideas!

Cheers!

Stefanie

A Message from Robert Boyd

My friend Robert read my post about Monavie and his website and he requested that I invite all my reader's to visit the "My Story" section of his website. I have been reading Bobby's e-mails telling his story along the way as he battled his cancer. Today his doctor told him he can now tell everyone he HAD cancer! Congratulations Bobby! You're a trooper Baby! Gwen I know he didn't do it without you there every step of the way! I love you both!

Please do visit Bobby's website at www.mymonavie.com/robertandgwen and read his first hand story of how Monavie helped him through his fight with cancer. You will be intrigued, and it just might be the answer to your prayers.

Monavie...help your body fight cancer

I have been receiving e-mails from a long time family friend who has been battling throat cancer about an amazing health drink called Monavie. I have known Robert Boyd since I was 6 years old...which was 5 years before I was diagnosed. Bobby, as I affectionately call him, was made aware of the existence of Monavie from a friend of his who defied amazing odds and beat cancer. During his treatment Bobby's friend was introduced to Monavie, and begin drinking it as he continued his fight with cancer. Monavie is a health drink, not a drug, but it may give your body the nutrition and strength it needs to endure treatment and potentially recover.

Please visit Bobby's website www.mymonavie.com/robertandgwen to learn more about Monavie. I absolutely felt the need to post this information on my site, because my target readers are cancer patients and survivors and/or their families. It's too important not to spread the word about Monavie, because for some it may save their lives.

It Really Does Grow Back!

Yes, that's me! I was 12 years, old and confidently bald from Adriamycin treatments. Look! I've got my smile on! Does that look like the face of a kid who was phased by her lack of hair? I had bigger things to worry about than losing my hair. It was only temporary! I mean really people...it DOES grow back!

I do understand that for some it does seem to be an issue so let's have a little fun here and see if we can make some of those negative feelings go away.

To begin with, it's the easiest hair style you'll ever have! Just wash your scalp with a little baby shampoo, towel dry it, and you're good to go! It takes women forever to do their hair! I dry it after I wash it then use a flat iron on it a section at a time. I don't have eyes in the back of my head so doing the back often tests my patience. I often find myself reminiscing...Hmmm...just a little baby shampoo... But don't worry, I'm not gonna pull a Brittany Spears number!

At home or at the hospital I went au naturel. I didn't really like wearing anything on my head then, and I still don't unless it's cold. But chemo made me very sun-sensitive so when I would go outdoors I opted for a scarf or a bandana. It was cool and breathable, and didn't make me too hot. I was also fond of wearing my Houston Astros baseball cap even though I was once mistaken for a boy! It was funny! What do I care? GO STROS!

I did have a wig, but I think I wore it a total of 2 times. That thing was just too hot for me. I live in Houston, Texas remember? As humid as it is here it's a wonder it didn't just melt onto my head! Ok I was kidding...but it's hotter than Hades here! If you live in Alaska or Northern Canada or some place like that then a wig might be a nice option. They make really great looking wigs now! They are of a much better quality than what we had in 1982. They make them with real hair instead of synthetic materials.

I did a bit of research and found a list of places/websites that are recommended by The American Cancer Society to purchase wigs and other head covers. They are as follows:

Wigs and Hair Loss Accessories

The following companies supply wigs, hair loss accessories, or other items as noted.

Classy Sisters Wigs
15620 North 35th Avenue, Suite #4
Phoenix, AZ 85053-3892
Telephone: 602-993-8090

Designs For Comfort, Inc.
PO Box 761044
Marietta, GA 30066
Telephone: 1-800-443-9226 or 770-565-8246
Internet Address: www.headlinerhats.com

Doma Designs
426 East Bissell Avenue
Oil City, PA 16301
Telephone: 1-888-603-1206 or 814-676-5033
Internet Address: www.domadesigns.com

Headcovers Unlimited
35B Tiffany Plaza
Ardmore, OK 73401
Telephone: 580-226-5871 or 580-226-9447
Internet Address: www.headcovers.com

Ida Joy Shoppes
24800 Chagrin Boulevard, #105
The Gunderson Building
Beachwood, Ohio
Telephone: 1-888-551-1017
Internet Address: www.ida-joy.com

Look of Love International
555A North Michigan Avenue
Kenilworth, NJ 07033
Telephone: 1-800-526-7627
Internet Address: www.lookoflove.com

Secretly Yours Enterprises, Inc.
771 Village Boulevard
Suite 213
West Palm Beach, FL 33409
Telephone: 561-697-8818
Internet Address: www.secretlyyours.com

Wittman Textiles
11570 SE Dixie Highway
Hobe Sound, FL 33455
Telephone: 1-800-890-7232 or 772-546-4656
Internet Address: www.wittmanntextiles.com

You can visit the website for The American Cancer Society at www.cancer.org. You may qualify for a free wig or head cover. Patients at M.D. Anderson Hospital can visit the Beauty/Barber Shop provided by Volunteer Services for free services including shampooing, shaving, haircuts, and/or a wig or head cover. It is located in the Main Building basement near Elevator E and is open Monday - Friday from 8am-5pm. For more information about the M.D. Anderson Beauty/Barber Shop call (713) 792-6039 or visit www.mdanderson.org. There are many more websites online where you can purchase head accessories as well.

I hope this has helped you pretty baldies feel better about your lack of hair. The insecurity you may feel initially is normal, but it will get better. When you think people are staring at you try what I did for a good laugh. Reach up as if you are about to scratch your head...then suddenly yank your head cover off! Anyone who was staring will jump 10 feet and look away...BUSTED! You get to have the last laugh because the joke is on them! You are comfortable with your baldness. It is the people who are staring who have issues! :D

If you are going to be outdoors I recommend that you cover your head with at least a scarf or a ball cap to keep it from burning. When indoors take it all off and love your bald and beautiful head! You're still the same wonderful you! Enjoy it before you have to break out the blow dryer and styling irons, and endure bad hair days again! Seriously...it really does grow back!

Parents of Children With Cancer

It is important to remember that cancer patients themselves are not the only ones who are effected by the whole ordeal they are going through. It takes a toll on the entire family. This post is especially for parents whose children have cancer. I have sent questions via e-mail to two ladies who made all the difference in the world by being there when I was sick. The first is my wonderful mother, Linda Cooper. The other is my best friend, and Osteosarcoma survivor, Belle Sewell's mother Ann Sewell. After all she did for me back then and for how much I love her still I have come to affectionately call her Mama Ann. They live in Arkansas and had to travel to Houston for Belle to receive treatment. Belle and I had our treatments scheduled at the same time, and we shared the same hospital room. We are like sisters now, and our mothers bonded and have become best friends. I asked Mom and Mama Ann if they would provide me with some feedback that I could share with other moms who may be going through the same thing they did with us, and they were only too happy to oblige. Remember these are just their opinions, and everyone's experience is different. We sincerely hope this will be beneficial to all of you.

Question 1: How did it help you to bond with other parents whose children have cancer? How did you support each other?

Cooper:
It helped to have other parents to talk with, cry with, and have someone who is going through exactly what you are going through. In the beginning it was hard for me to open up to others, and then I met my current Arkansas family, Ann, Belle, Paige, and Jim Sewell and it was easy. I had family and friends, and as good as they were there is nothing to compare to having those who know your pain first hand. Belle had the same cancer as Stefanie and her Mama Ann was my soul mate. We would try and schedule the girls' chemo together so we could room together at the hospital. Then if I needed to take a shower or Ann needed to take a shower the other one would be there to be with the girls. Ann would hold the cup when Stefanie got sick just as she would for Belle. It was a team effort and gave me great strength to know she was there and I felt good knowing that I was there for her as well.

Sewell:
Other parents with children with cancer were the only ones you could bond with. They knew what you were going through. We support each other by just being there. The down side was if they lost their child you and your child lost a friend. Toward the end depending on the kind of cancer we kept more to ourselves.

Question 2: Why is it so important to have good communication with your child's doctor , and what kinds of questions should you ask?

Cooper:
From the beginning the scariest part was the unknown. I had a million questions and I wanted answers. Of course most of my questions could not realistically be answered as you just had to put it in God's hands. But for day to day procedures, it gave me peace of mind to know what was going to be done to Stefanie and what she had to expect. I also believe that communication with the nursing staff is important as well, as they are the ones in charge of your child more than the doctor. I kept a daily journal of procedures to be done and Stefanie's progress/setbacks. I threw that journal away after Stefanie's last treatment, but wish I would have kept it for her. I guess I just wanted that part of her life to be over, but she may have been interested later to see or remember what she went through. I think a parent or patient should ask any question that they do not understand. As the old saying goes, there is not a stupid question, so ask it. It is your loved one's life in their hands and you deserve to know and understand as much as you can. As hard as it is to think about, doctors and nurses are human and make mistakes. I felt it was our job to make sure a mistake didn't happen as we watched all medications that were given. Stefanie, at age 11, even caught a nurse about to administer her chemo via IV, but it was to be given when she was put to sleep through an intra-arterial procedure.

Sewell:
There have been so many advances since my daughter was sick. Being able to look things up on the Internet helps parents and patients today.

Question 3: Was Social Services important to you, and how did your Social Worker help you?

Cooper:
Personally, I was lucky that I lived in the same city that Stefanie received her treatment and did not need the social services as much as someone from out of town. But I did experience first hand many that did. For someone out of town or out of the country, it gave them someone to turn to for all types of questions, some sense of security. Don't be too proud to ask to see someone in social services. In most cases it will relieve some of your stress.

Sewell:
Social services were of no help to me. To this day they don't ask me how I feel about my child having cancer. It tore our family apart that I had a sick child, and had to leave my other daughter to travel to Texas for treatments. The volunteers that would come and play a game with my daughter while I took a twenty minute walk outside made a big difference in my daily life.

Question 4: What are some ways you took care of yourself, both physically and emotionally while your child was being treated?

Cooper:
I prayed. Personally, I don't think I took very good care of myself. I remember I had colds and my system was down just probably from the stress. I had family at home that I wasn't with, but knew I was not going to leave my child that needed me most. I drank alcohol a lot through most of it to get me through it. I don't advise that.

Sewell:
There was no choice. I would push as long as we were in the hospital, and crash when we got home after I caught up on all that had to be done to get ready to go back if something went wrong. Being so far away from Houston was a big problem.

Question 5: How did you cope with knowing you couldn't fix things for your child this time...that this time it was out of your control?

Cooper:
I think that this was definitely the hardest thing for me to deal with. Whenever Stef had a problem, most of the time I was able to fix it. It just is a natural thing for a mom. I kept struggling with the question of why her and not me. I kinda figured out that Stef, at age 11, would not have been able to take care of me, and I was there to go through every stick and tear with her.

Sewell:
Not having control is never easy for a mother and I don't think I ever gave up control. I would listen to the doctor but the major decision rested on me because she was my child.

Question 6: It is still important to call the shots sometimes when you think your child has had enough. Tell me about this.

Cooper:
The protocol that Stefanie was on was extensive. They changed it sometimes, because they found out that one way was not working and would try it another way. Near the end of her treatment they had to keep an Epi-Pen at the end of her bed, and I asked one day what that was for. The nurse said it was in case she has an allergic reaction. This had not been there in her previous treatments and I was concerned as she laid there looking like a cooked lobster. I spoke with an RN that I used to work for about my concerns on what this is doing to her and she said, "You know sometimes you have to call the shots and you might need to voice your concern and stop this type of treatment." Luckily the doctor did before I had to.

Sewell:
Very important and I have told her many many times she fought so hard to live, but her dad, her sister, and I fought every step of the way with her. Now that she is 37 she tells me "I'm a grown woman" and I tell her she's still and always will be my baby. When she feels bad I'm there just like it was back twenty plus years ago.

Question 7: Is there anything else you think is important or you would like to add that will benefit parents of children who have cancer?

Cooper:
I hope that anyone who has to go through this will find someone they can talk to. I feel that this is most important. Sometimes we would room with people who stayed to themselves and not talk, and I felt very sorry for them as I knew how lucky I was to have Ann for me and Belle for Stefanie. One thing you will learn from this is patience. Spending so much time in the hospital you soon discover you are a number. It is better that you realize that you are not going to change the system, but again, speak up and say something if you feel you are neglected or looked over. Hospitals are a very busy place. Remember to give doctors and nurses the respect they deserve. They work long hard hours and when you are going through these trying times it is hard not to loose it, but don't take it out on them, if not warranted. Pray.

Sewell:
Yes, the one thing I want to add is God sends angels to us when we need them, and he sent me a very special lady that lived in Houston. She and her family took us in and opened their hearts and home to us. Her daughter is the one doing this blog. I can say without a doubt we can call them and they us and whenever there is a problem or whatever the good news is we share it. So at my darkest hour I met my best friend.

While the ordeal of going through cancer is tough and often scary for the patient, it is important to remember that it is tough and scary for the family too. As a patient I was always told to be strong, and that it would get me through. What most people did not know was that as strong as I tried to be for myself, I was even stronger for my mother. She lost both of her parents before the age of 30, just 4 years before I was diagnosed, and I did not want her to lose me too. I prayed for her and Mama Ann as much as I prayed for me and Belle. Mostly I just thanked God for our mothers' love and support, and for the strength He gave them to go through this with us. So this post is for all parents whose children have cancer. I hope this has helped you, and given you some peace of mind. Ask any and all questions you may have. Use Social Services if you need to, and remember they are there to help you. Above all find a support system. You are not alone, and other parents need your support too. You are loved, needed, and appreciated. Just remember, as much as you feel you need to take care of your child, you also need to take care of yourself.

You've Gotta Eat!

Imagine this. You've just recently had a chemotherapy treatment, but in order to go home from the hospital you have to convince the doctors you can keep some food down. Your room service tray arrives, and you have to pick up the menu and read it to identify the food on your plate. That never quite convinced me to eat when I was sick!

Like I said in my last post, M.D. Anderson Cancer Center has come a long way since 1982! Here is a run down of M.D. Anderson's current food services.

Cafe Anderson is located on the 1st floor of the Main Building where it has always been. But now instead of the smell of day-old coffee it smells pleasantly of fresh Starbucks coffee and good food! :) They provide cold and hot entrees, sandwiches to order, pizzas, soups, grill items, a salad bar, and desserts. AND...they have their very own Chick-fil-A! Hours are weekdays 6am-8:30pm, and weekends 7am-7:30pm.

Waterfall Cafe is located on the 2nd floor of the ACB building. They provide hot entrees, sandwiches, soups, salads, and more. Hours are Weekdays 6:30am-3pm.

The Oaks is located in The Rotary House Hotel. It is open for breakfast, lunch, and dinner and offers a full buffet for breakfast and lunch. An a la carte menu is also offered. The food here is excellent! I love the French Onion Soup!

Deli and Grab-n-Go are also located in The Rotary House. At the Deli you can make a selection from the hot food line or shop in the convenience store. At Grab-n-Go, you can build your own salad, get hot nachos or a freshly made po-boy. Deli hours: Mon-Thurs-7am-10:30pm, Friday 7am-8pm, Saturday 12-8pm, Sunday 12-8:30pm. Grab-n-Go hours: Mon-Fri - 10am-3pm.

Starbucks is located in The Rotary House. I think we all know about this wonderful coffee bar! It is open Mon-Fri 6am-5pm.

There are also 3 coffee bars featuring Starbucks. They are:

Cafe 24/7 is located in the Main Building next to Cafe Anderson. They also feature Smoothie King smoothies. As the name implies they are open 24 hours a day.

Espresso in The Park is located on the 2nd floor of the Main Building near The Park. Hours are Weekdays 7am-3:30pm.

Cool Beans Cafe and Bakery is located on the 2nd floor of the CPB building near The Star. Hours are 6:30am-5pm.

M.D. Anderson also offers room service to their patients and guests. Guest meals must be paid for in cash. Hours are 6:30am-9:30pm.

The Jolly Trolley has been around since my time at M.D. Anderson and even longer. It is a snack cart that is brought all around the hospital during the daytime hours by our wonderful volunteers. They offer fruit juices, soft drinks, sandwiches, and snacks.

M.D. Anderson has definitely made some major improvements in the area of food service. Now there are places to eat in a lot more locations on campus, and the quality of the food is so much better! There are so many choices now. If you're up for a nice dinner go to The Oaks. Not in the mood for heavy food? Grab a sandwich or a salad at Cafe Anderson or Waterfall Cafe. Need a coffee fix? Visit one of 4 locations on campus featuring Starbucks! And maybe while you're waiting to get x-rays taken, and you get a bad case of the munchies The Jolly Trolley might pass your way. No more excuses folks! It's time to eat and go home!