Thursday, July 15, 2010

Letter to Cancer

I read a wonderful blog entry from a young husband and father who has brain cancer. He wrote a letter to cancer, with no intention of publishing it; but he changed his mind, and I am so glad he did. I read his letter and found strength in his determination to make his brain cancer take a back seat to his life. This man thanked cancer for giving him a new life - a better life. He now knows his God and he knows what is really important in life. He does not expect cancer to win in the end. Neither do I.

Heather is much like this man. She has not written a letter to cancer, but she has not given it a chance to rule her life. She put this demon on a back burner and never plans to use that burner again! It is O - V - E - R!

Next week we head to San Francisco for her bi-monthly Dr. Chang visit. As you know, I begin to start my jitters about two weeks prior, so I am in full-swing now. Actually, we are waiting an extra week this month because of Dr. Chang's schedule, so the anxiety is a little stronger this time.

But, sometimes things work for the best. My mom - Heather's grandma - passed away July 12, which would have been either a travel day or the day prior to travel if our schedule had been on time. Losing a loved one is something no one has to try to explain. Simply put: It hurts like HELL! I am so thankful I was at her side, so I'm happy our UCSF trip is a week later than normal.

Heather is doing very well. I think the steroids are finally OFF! She is working hard at her physical therapy, eating very healthy, and exercising regularly. I think good habits will equal good results.

She has settled into her new home and seems to be enjoying the new location close to us :) She and I try to walk our dogs together every night, which is a perfect "mom and daughter time." I am so blessed.

Please keep Heather in your prayers as we head to UCSF. I have learned our new way of life - waiting, waiting, waiting. But, when I hear Dr. Chang say the words "stable" or "no change," all the waiting is worth it. I turn to Heather, our smiles meets, and the hugs begin!

Thursday, June 17, 2010

Summer Happenings

It has been awhile since I have written, and I think that must be "good" news. May ended my 25 year teaching career, so I was very busy preparing for my next "career": retirement.

My nephew is trying to make changes to the website, but he is having some technical problems. Currently, the site is not up-to-date and I cannot fix that. I am eager to get it fixed because I have some good news to share. Dr. Susan Chang will be coming to Omaha August 26 - 27 for the first Brain Tumor Symposium at Methodist Estabrook Cancer Center. LFAC is sponsoring the event, and I'm going to work to make certain it is a success. I met with several people to help organize the two-day symposium. August 26 will be dedicated to patients, family, friends, and caregivers. Topics will include the following: Diagnosis, gliomas (low and high grade), radiation, surgery options, trials, vaccine, and a question / answer session. Dr. Chang will spend the entire day with this audience. I'm so excited to offer her expertise to such a special group of people. August 27 is a medical symposium for medical personnel. Again, Dr. Chang will share her expertise and other medical doctors will deliver up-to-date information to the medical community regarding brain tumors. Methodist Estabrook Cancer Center will be promoting this event, so I will keep people posted. We are so excited about this opportunity!

Heather is doing well - so far, so good. She just moved into her new house, so she is keeping busy unpacking and decorating. We are so happy that she now lives close to us - about 8 blocks from us. We can take walks, help her with her dog, or help her with anything she may need. It is so convenient. She continues her physical therapy twice a week. I think it helps to keep her left side strong. The past month has been difficult for her for many reasons, and she continues to amaze me with her strength and her determination to face adversity head on. She is not going to waste her life, that is for certain! She remains my role model.

I have a special thank you to shout out: THANK YOU ROSARY! This lady has been sending Heather cards regularly for over two years. We have College World Series seats by Rosary, and we only see each other during the CWS. But she has made a lasting impression on our family with her continued support through prayer and cards. So, thank you, Rosary.

The third annual Monster Bash for Brain Cancer is scheduled for Thursday, October 28. Mark your calendars now. The KAT radio station is sponsoring it this year, so we are hoping planning the BEST Monster Bash yet: silent auction, door prizes, raffles, costume contest for adults and children, live band, and more. As always, all money raised goes directly to help with diagnosis, treatment, awareness, etc. for brain cancer at Estabrook Cancer Center. It remains our mission to make a difference.

I was watching Dr. Oz the other day, and WOW - he was doing a show on cancers. He discussed the 5 leading cancers. He started with symptoms and had someone try to guess the cancer. Well, brain cancer was #4 on his list of 5. As a reminder: A constant headache that is worse in the morning than later in the day or a headache that includes vomiting / nausea, a new seizure in an adult, unsteadiness or imbalance - especially with a headache, gradual loss of movement or sensation in a limb, or speech difficulty can be a sign of brain cancer. Get it checked out and demand an MRI if not satisfied. And don't forget about the second opinion.

Saturday, May 8, 2010

May is Brain Tumor Awareness Month

Another MRI, Dr. Chang visit, and blessing: "no change." What better Mother's Day gift could I ever, ever receive?

Heather and I took the train from San Jose to San Francisco this time. We actually enjoyed the experience very much. Surprisingly, there were no glitches - of any kind. While on the "baby bullet," Heather and I shared funny stories and future possibilities. We always seem to be able to make certain we make the best of all situations, and this time was no different.

After the MRI, we headed to the shuttle for our UCSF visit with Dr. Chang. Two transfers later, we're there. Unfortunately, someone was not hearing good news, so Dr. Chang was running late. Instead of sitting there, we headed for the sunshine - and wind - outside. People watching in San Francisco is always a treat :) The farmer's market offers such sweet strawberries, and the fresh flowers tickle our senses, so sitting outside helped to clear our heads and give us the strength to enter the office on 8th floor once again.

Once again our legs and feet started twitching and then we met the couple from Idaho. She has Glioblastoma (Grade 4); Heather, Anaplastic Astrocytoma (Grade 3). Her husband found UCSF while researching; I found UCSF while researching. Neither one of us liked the options that were given to us "way back then." We have all come so far. All of us know we are in the "right' place; and because of UCSF, we are able to share life with our loved ones. Nothing is more important than that!

Dr. Chang finally emerges, apologizing for running so late. Never, Never would we be impatient with that. I'm so thankful we aren't the ones hearing the news again. I'm so thankful we get to see Dr. Chang's smile when she greets Heather. "No change." Yes, those are the best words ever :)

May is Brain Tumor Awareness month. PLEASE say a prayer for a cure. PLEASE pray for someone with brain cancer. PLEASE do something to make May be heard: BRAIN CANCER sucks! We need a cure! We need HOPE!

Thursday, April 15, 2010

Breakfast To Begin the Day

I just returned from our 2nd Methodist Hospital Foundation / Estabrook Cancer Center breakfast. Last year, the breakfast celebrated the support from the UNO Hockey Team and the Community for raising $44,000. This year, we celebrated the same groups for raising $50,000. WOW! To finally be able to personally thank the team, coaches, doctors, community members, and friends who all made it possible started my day like a good breakfast :) Of course, a wonderful breakfast was served, but I just enjoyed the energy provided through seeing so many great people sitting in one location.

LFAC was honored to be able to recognize the efforts of the UNO Hockey team - players, coaches, trainers, managers, and staff. Without their commitment, we would not have had an event. In addition to recognizing the UNO side, I was also able to recognize two people who have stood by my side throughout the entire process: Robyn Sitzman and Jean Koerten. Their creativity and tenacity have certainly helped LFAC to succeed. And the Methodist Hospital Foundation team - so supportive! And we were so honored to have so many medical personnel in attendance as well. Dr. Poppa (Heather's oncologist) even took the time to speak to everyone.

The most fun part of the morning being able to finally announce the winners for the "Stache-for-Cash" fundraiser:
Best Effort: Terry Broadhurst (#17)
Most Original Face: Matt Smith (#2)
Most Bushy Face: Jawed and Mark VonBrokern (#4)
Best Stache: Dr. Lydiatt and Eddie DelGrosso (#7)
Community Spirit: Coach Mike Kemp
Omaha's Face (raised the most money): David Scott

Special recognition went to Ron Brasel for his support throughout the event. He made certain LFAC was on the dasher boards - gray ribbons and our frog logo.

Again, the morning is one that I look forward to because I can say THANK YOU to so many people!

As my husband said this morning to the group: There is a different between donating money and philanthropy. UNO and all the people who made the event successful were involved in philanthropy!

Wednesday, March 17, 2010

Belief in Hope on the Horizon

San Francisco's trip resulted in another "status quo" for the tumor. Heather continues to do well, considering part of the dumb thing is still in her head! Waiting for Dr. Chang to greet us in the waiting room is always difficult: I notice that my legs twitch, I can't sit still, and Heather is a bit "short." I look around the waiting area and always remind myself that EVERYONE is in that waiting room because of a brain tumor. I begin to make-up my own stories about all who are waiting; and in my stories, they all survive because Dr. Chang saved their lives. Eventually, Dr. Chang comes out and gives Heather her hug and we move to the inner room.

Dr. Chang sits at the multi-screen computer and begins her report. We have been so fortunate that her reports - other than the first one she delivered to us - have been good. I always feel odd saying we received "good" news when Heather has a freakin' tumor in her head, but "status quo" IS GOOD NEWS! No change = GOOD NEWS. We are lucky :)

We had to ask Dr. Chang some questions that were a bit uncomfortable because it meant we had to also discuss the tumor, the Grade 3, the current prognosis - all the UGLY stuff that comes with having brain cancer. It's those subtle reminders that can knock the wind out of you, but then you realize that we are still planning for the future because we believe in the future. We believe in better treatments; We believe in miracles. We believe in a cure.

From the moment Heather was born, I knew she had a purpose in life. She was 3 weeks late (and I was as swollen as a anyone would be after carrying a child an extra three weeks in Nebraska during the summer!). But what made her birth date more special was the date itself: September 13. The same date my father died from brain cancer in 1962, Of course, I had NO vision of what was to come, but I just knew she was special. So, I have always believed her diagnosis just means that she will be around for a cure. The circle of life will be completed with her receiving the treatment that my father could never even dream of. So, through those questions and answers that we shared with Dr. Chang, comfort came when we could say: "We never know when that cure will be here, but it will."

Heather had to see a neurologist Thursday (3/18). Dr. Chang thought Heather might be having some motor seizures on her left side, particularly in her left hand. In addition, her left side seems to be a bit weaker, so she is back into Physical Therapy. The neurologist, Dr. Diesing, believes her issue is more spasmodic, not seizure related. However, she will undergo an EEG on April 2 to make certain. She will forever need to maintain muscle therapy, which she is already learning in physical therapy. He really explained how complicated her surgery was and how well she is doing for such a task. Apparently, we never knew the full extent of her surgery. We have been told before that there is no way surgery could ever get any closer to the motor skills area because there is NO room. Dr. Long performed the surgery right on the line with NO room to spare. I guess hearing it again was good for us.

I cannot think or a more appropriate way to end this post: In memoriam of Nathan Waggoner, a very courageous 17 year old who lost his battle with brain cancer this morning (3/19/2010). We honor him for his fight and we honor him for his courage. As a mom, I don't even want to think about what Monica and her family are going through right now. Our heartfelt sympathies and prayers go to the entire family and the friends Nate has left behind. God Bless.

Sue

Monday, March 1, 2010

Omaha Did It Again!

Who would have ever thought that LFAC's "BIG" fundraiser would have another successful year? When we raised $44,000 last year, I never thought we would top it. But leave it to Omaha to support a great cause once again in 2010!

When the final horn sounded to end the game on Saturday (2/27), we had our "estimate" for the announcement: almost $50,000. We are still counting all the money, which is coming from several directions, and we are now just barely over $50,000. I think I am still in shock. So many volunteers helped to make this dream come true: Michele, who has a vested interest in both UNO and brain cancer; Bob and Robyn, who have made brain cancer their personal cause even though Bob is battling his own fight with lymphoma; Jean and Jeff, who continue to support LFAC; Kate, who is now known as our very own "ticket master"; and all the people who supported us during the six games. Each game we had about 30 volunteers, some of whom worked more than one game.

Jon and I are exhausted but feel so proud to announce that LFAC will be able to purchase the Functional MRI (fMRI) for Methodist Hospital and Estabrook Cancer Center. We created LFAC to make a difference, and now we have. But, without all the support from our family, friends, and Omaha community, that would not have been possible. So, THANK YOU!

Someone asked me, "So, now what are you going to do?" My response: "Going to plan our next event [car show, I think]!" I'm certain we can continue to help in some manner.

Currently, Heather and I are preparing for her UCSF medical appointment next week. Unfortunately, Heather is sick with bronchitis and an ear infection. She has been miserable for about two weeks. With a new dose of antibiotics and steroid breathing treatments, hopefully she can shake the bug.

Brain Cancer Update from The National Cancer Institute:
In 2009 = 22,070 new brain cancer diagnoses; 12,920 brain cancer deaths. TOO MANY!

Saturday, January 30, 2010

UNO / LFAC Team Together Again

One year ago, we were going crazy trying to prepare for our first UNO / LFAC fundraiser. Fast forward - we are doing it again. "Stache-for-Cash" will be starting Friday, February 5, and continue through the month of February: 2/5, 2/6, 2/12/, 2/13, 2/26/ and 2/27.

Instead of participants shaving hair off this year, they are currently trying to add some to their faces. Participants are sporting facial hair, wearing pins that say, "Ask me about my Stache," and trying to raise money so that they remain in the competition. After the first series, five participants will be eliminated. After the second series, ten more will be eliminated. The last series will determine the winners: Most Bushy, Best Effort, Most Original, Best Stache / Face, and Mr. Omaha (whoever raises the most money).

Along with "Stache-for-Cash," special raffles and a jersey auction will take place. On Friday 2/26, LFAC will distribute 2,000 wristbands; and on Saturday 2/27, Methodist Hospital Foundation will distribute 5,000 key chain flashlights for a special lighting ceremony before the game. Brandi Petersen and Jeff Degan will be the emcees again this year. In addition, each game will honor a brain cancer survivor / patient as he/she ceremoniously drops the puck. After last year's $44,000, our sights are set high. The goal is $50,000 this year.

LFAC is set to purchase a Functional MRI (fMRI) for Methodist Hospital. fMRI is becoming the diagnostic method of choice for learning how a normal, diseased, or injured brain is working, as well as for assessing the potential risks of surgery or other invasive treatments of the brain.

Physicians perform fMRI to: *examine the anatomy of the brain; *determine precisely which part of the brain is handling critical functions such as thought, speech, movement and sensation, which is called brain mapping; *help assess the effects of stroke, trauma or degenerative disease (such as Alzheimer's) on brain function; *monitor the growth and function of brain tumors; and
*guide the planning of surgery, radiation therapy, or other surgical treatments for the brain. Although brain tumor patients will definitely benefit, so will other brain trauma patients.

February will be busy and memorable. We will be busy, busy, busy with the fundraiser; and the one weekend UNO is not in town, we will be celebrating Heather and Mike's engagement with a wonderful party. Every weekend will be filled with excitement and energy.

Then March will come and we will head to San Francisco again for another visit with Dr. Chang. Until then, we will enjoy our weekends and plan for a wedding.

Cancer is so limited that:
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit

I'm feeling positive tonight!

Sue