Another trip to San Fransisco, and we were blessed with another "status quo" report. At this time, Heather's tumor does not appear to be growing and appears to be surrounded by dead cells. We cannot ask for any better news.
We had a discussion with Dr. Chang regarding the vaccine that seems to be doing well in trials. Currently, UCSF is participating in a trial using the vaccine. However, unless Heather needs another surgery someday, she will not be able to use the vaccine because the vaccine is made from the patient's tumor. In addition, there is only one direction that Heather's tumor could grow for her to even be eligible for surgery. So, no growth = no surgery anyway. I'm all about keeping it "status quo."
We return in two months for another MRI and check-up. Someday we will have to wait three months between visits, but I don't know if we will ever stretch it longer than that - at least not for a LONG time from now. I know how blessed we are that Heather is doing well right now. I know others who are not doing as well, and my heart aches for them. But no one is without hope, and I believe researchers are making strides in the fight against brain cancer.
Heather has taken a little break from wedding plans, but we will start again after the holidays. Speaking of holidays, we are almost ready. I started my shopping with a specific list and before Thanksgiving, so I am almost finished. The house is decorated, the presents are wrapped and under the tree, and a few treats have been made and are in the freezer. I feel good :) I love the holidays - the lights, the music, the shopping, the decorating - everything! And getting good news is always a blessing.
Amy comes home late on December 23 and leaves on December 27, so our family will once again be together for the holidays. No matter how many gifts are under the tree, the best gift of all (other than health) is family being together. We truly appreciate and honor our gift of family and good news for this holiday season. From our family to yours, we wish you a happy and safe season of love, peace, and togetherness.
Sue
Saturday, December 12, 2009
Tuesday, December 1, 2009
LFAC Is Spending Some Money
After another successful Monster Bash and another successful Pampered Chef Open House, Leap-for-a-Cure is finally going to spend money! Several doctors, including Dr. Long - Heather's neurosurgeon - have asked to purchase an fMRI (Functional MRI). This technology helps to further examine the anatomy of the brain and helps to determine precisely which part of the brain is handling critical functions such as thought, speech, movement, and sensation, which is also referred to as brain mapping. The fMRI monitors the growth and function of brain tumors and helps to guide the planning of surgery, radiation therapy, or other treatments for the brain. Before Heather's first surgery, she had to go to another hospital for this procedure. Although the purchase decision is not final, the doctors are working together to purchase a machine to help with brain tumors.
In addition, a summer conference / seminar is still in the planning stages. Again, several doctors, including all of Heather's, are involved. Again, the keynote speaker will be Dr. Susan Chang, Heather's neuro-oncologist in San Francisco.
In an age where science seems to do the unimaginable, only three new brain cancer treatments have been FDA approved in the past 25 years. This must change. For the patients living with glioblastoma, the families that support them, and the doctors that treat them, finding improved treatments is not an option—it’s a necessity. Although there are probably many research ideas that I do not know about, I have heard of two which provides some promise.
First, the Ivy Glioblastoma Atlas Project will show which genes are active – or not functioning normally – within a glioblastoma tumor at a level of detail not previously possible. The development of better therapies depends on understanding the key molecular changes that drive brain tumor behavior. Since glioblastoma is a highly heterogeneous disease—meaning that brain cancer manifests itself differently in each person—it is challenging for researchers to discover effective treatments. Each treatment plan needs to be highly personalized and the development of better patient therapies depends on an improved understanding of the differences in brain tumors. This detailed information from the Ivy Glioblastoma Atlas Project will move us closer to making personalized medicine a reality.
Second, a vaccine for treating a recurrent cancer of the central nervous system that occurs primarily in the brain has shown promise in preliminary data from a clinical trial at the University of California, San Francisco. The vaccine actually provokes a tumor-specific immune response that is patient specific. T-cells, the killer compound of the immune system, track down the cancer and try to kill it. The vaccine concept is not new, but until now, it has been used as a treatment of last resort, reserved for patients whose brain tumors showed evidence of reoccurring. UCSF used the vaccine at the beginning of a patient's brain tumor treatment regimen. It was a quick injection that will be followed up with others in the weeks to come. So far, so good. The idea is to combine the tumor vaccine early, while the cancer is being weakened by chemotherapy and radiation. The hope is patients will then be able to manage the disease using their own immune system. "The best outcome would be that...we convert this deadly cancer into a chronic disease, like diabetes or hypertension. Something a medication can take care of, that's our goal." WOW - we could happily live with that!
Wedding update: Plans are moving forward for Heather and Mike's big day: July 31. Her wedding dress is hanging in one of our closets and will be altered later this spring. All the bridesmaids' dresses are ordered, the church and our minister have been secured, the band and photographer are good to go. I know we have much work yet to do, but I feel we have a good start. We will be meeting with the caterer and deciding about the cake sometime in January. Of course, there are so many little things - things I will probably forget - that need to be done. No matter what, the day will be SPECIAL!
Heather and I head to San Francisco on Sunday for her bi-monthly appointment. Because she is no longer taking chemo, we are a bit more anxious than usual for a good "status quo" report. I will keep you posted. As always, please keep Heather in your prayers.
In addition, a summer conference / seminar is still in the planning stages. Again, several doctors, including all of Heather's, are involved. Again, the keynote speaker will be Dr. Susan Chang, Heather's neuro-oncologist in San Francisco.
In an age where science seems to do the unimaginable, only three new brain cancer treatments have been FDA approved in the past 25 years. This must change. For the patients living with glioblastoma, the families that support them, and the doctors that treat them, finding improved treatments is not an option—it’s a necessity. Although there are probably many research ideas that I do not know about, I have heard of two which provides some promise.
First, the Ivy Glioblastoma Atlas Project will show which genes are active – or not functioning normally – within a glioblastoma tumor at a level of detail not previously possible. The development of better therapies depends on understanding the key molecular changes that drive brain tumor behavior. Since glioblastoma is a highly heterogeneous disease—meaning that brain cancer manifests itself differently in each person—it is challenging for researchers to discover effective treatments. Each treatment plan needs to be highly personalized and the development of better patient therapies depends on an improved understanding of the differences in brain tumors. This detailed information from the Ivy Glioblastoma Atlas Project will move us closer to making personalized medicine a reality.
Second, a vaccine for treating a recurrent cancer of the central nervous system that occurs primarily in the brain has shown promise in preliminary data from a clinical trial at the University of California, San Francisco. The vaccine actually provokes a tumor-specific immune response that is patient specific. T-cells, the killer compound of the immune system, track down the cancer and try to kill it. The vaccine concept is not new, but until now, it has been used as a treatment of last resort, reserved for patients whose brain tumors showed evidence of reoccurring. UCSF used the vaccine at the beginning of a patient's brain tumor treatment regimen. It was a quick injection that will be followed up with others in the weeks to come. So far, so good. The idea is to combine the tumor vaccine early, while the cancer is being weakened by chemotherapy and radiation. The hope is patients will then be able to manage the disease using their own immune system. "The best outcome would be that...we convert this deadly cancer into a chronic disease, like diabetes or hypertension. Something a medication can take care of, that's our goal." WOW - we could happily live with that!
Wedding update: Plans are moving forward for Heather and Mike's big day: July 31. Her wedding dress is hanging in one of our closets and will be altered later this spring. All the bridesmaids' dresses are ordered, the church and our minister have been secured, the band and photographer are good to go. I know we have much work yet to do, but I feel we have a good start. We will be meeting with the caterer and deciding about the cake sometime in January. Of course, there are so many little things - things I will probably forget - that need to be done. No matter what, the day will be SPECIAL!
Heather and I head to San Francisco on Sunday for her bi-monthly appointment. Because she is no longer taking chemo, we are a bit more anxious than usual for a good "status quo" report. I will keep you posted. As always, please keep Heather in your prayers.
Wednesday, November 4, 2009
Chemo Over, Monster Bash, What Next? Oh My!
Heather is officially finished with her chemo treatments for now. The standard treatment is 6 months on the Temador schedule after 6 weeks of radiation, and Heather lasted 10 months on it before her body said, "No more!" She is thrilled; she now saves $400 a month, and she won't have the infusions on Day 1 and Day 3 of her cycle and she won't have side effects. Both Jon and I are so happy for her, but taking her off something that has worked is very difficult for us as well. Heather's cancer has been treated aggressively, so I don't think we can ask for more - right now anyway. We return to UCSF December 8 for her first MRI/MRS not on chemo.
What next? As for Heather's treatment plan, we just wait. I don't think there are any plans to do anything right now unless something inside her little head starts to change. Right now her blood count is good; her MRI looks good (still a tumor, but it isn't growing); her life is good. She can sit back and enjoy spending her parents money on her wedding instead of medical bills. Even Jon and I like that :)
Monster Bash - what fun! Even though the weather worked against us, people supported the cause. Pictures will be posted on the site soon. It was a good night of fun, fabulous music, awesome people, and yummy food. What more could we ask for? Costumes were quite detailed and unique. I think almost half of the guests worse costumes, which added to the atmosphere.
Every year I meet wonderful people who have been stricken with brain cancer in some form - either as a care giver, a friend, a spouse, or a patient. I am also amazed at the strength these people have. This year, two people who lost their husbands to brain cancer donated time and support to the evening. Susan M. lost her husband almost three years ago to GBM; and Joey E. lost her young husband last spring to it as well. In fact, Joey's husband is the young man who went to elementary school with Heather. Also in attendance were four people who are currently surviving brain cancer: Heather, Courtney, Matt, and Ryan. They are the faces of those who are winning the battle. And of course, there were moms, wives, fathers, and so many friends who all supported an evening of fun, laughter, music, and a costume contest :) With the 50 plus raffle prizes and the silent auction items, we were busy all night. Old Chicago certainly knows how to host an event! Chasing Daylight knows how to play for an event! And, Mark Kresl knows how to photograph an event! We had it all!
What next? First, we are planning another November "national" Pampered Chef party. Michele needs to get busy with that ASAP! In January and February, LFAC will host another fundraiser with the UNO hockey team. More on that later. Spring time? We hope to add Hy-Vee to our list of supporters and have a car show in June. Then it will be back to Wear-Gray-for-a Day and Monster Bash.
So, with Heather in-check, our focus returns to our good friend Bob. He has to remain positive as he continues his battle with lymphoma. He beat it once four years ago, and now his enemy returned for Round 2. This time, it is stronger, so Bob has to fight harder. We are all praying and remaining positive that he will continue to light the way for Heather and she for him. She looks to him for her strength to beat the odds, so their tag-team is a unit. Not a night falls without some serious praying in our home, and some nights long conversations with Him go well into the night.
Once again I end with hope for the future, blessings for the present, and learning from the past.
Men may give up, doctors may give up, but God never gives up. We must remember never to give up!
What next? As for Heather's treatment plan, we just wait. I don't think there are any plans to do anything right now unless something inside her little head starts to change. Right now her blood count is good; her MRI looks good (still a tumor, but it isn't growing); her life is good. She can sit back and enjoy spending her parents money on her wedding instead of medical bills. Even Jon and I like that :)
Monster Bash - what fun! Even though the weather worked against us, people supported the cause. Pictures will be posted on the site soon. It was a good night of fun, fabulous music, awesome people, and yummy food. What more could we ask for? Costumes were quite detailed and unique. I think almost half of the guests worse costumes, which added to the atmosphere.
Every year I meet wonderful people who have been stricken with brain cancer in some form - either as a care giver, a friend, a spouse, or a patient. I am also amazed at the strength these people have. This year, two people who lost their husbands to brain cancer donated time and support to the evening. Susan M. lost her husband almost three years ago to GBM; and Joey E. lost her young husband last spring to it as well. In fact, Joey's husband is the young man who went to elementary school with Heather. Also in attendance were four people who are currently surviving brain cancer: Heather, Courtney, Matt, and Ryan. They are the faces of those who are winning the battle. And of course, there were moms, wives, fathers, and so many friends who all supported an evening of fun, laughter, music, and a costume contest :) With the 50 plus raffle prizes and the silent auction items, we were busy all night. Old Chicago certainly knows how to host an event! Chasing Daylight knows how to play for an event! And, Mark Kresl knows how to photograph an event! We had it all!
What next? First, we are planning another November "national" Pampered Chef party. Michele needs to get busy with that ASAP! In January and February, LFAC will host another fundraiser with the UNO hockey team. More on that later. Spring time? We hope to add Hy-Vee to our list of supporters and have a car show in June. Then it will be back to Wear-Gray-for-a Day and Monster Bash.
So, with Heather in-check, our focus returns to our good friend Bob. He has to remain positive as he continues his battle with lymphoma. He beat it once four years ago, and now his enemy returned for Round 2. This time, it is stronger, so Bob has to fight harder. We are all praying and remaining positive that he will continue to light the way for Heather and she for him. She looks to him for her strength to beat the odds, so their tag-team is a unit. Not a night falls without some serious praying in our home, and some nights long conversations with Him go well into the night.
Once again I end with hope for the future, blessings for the present, and learning from the past.
Men may give up, doctors may give up, but God never gives up. We must remember never to give up!
Saturday, October 10, 2009
Good News; Scary News
Good news is always easy to handle - usually. The good news is that Heather's scans this month are again stable. Her tumor is not active and the area around the tumor looks good. The Temador has done its job, which has provided us security. However, Heather's body is starting to react to the chemo. Each month her white cell counts and platelets dip lower. Her October chemo had to be postponed. Therefore, Dr. Chang feels it is time to stop the chemo. WAIT! Stop what is working? To me, that is scary. I told Dr. Chang, "I'm scared to have her stop chemo." Dr. Chang's simple and firm reply: "I'm scared to have her stay on it."
The compromise? Monitor Heather's blood weekly and make the final decision in 4 weeks. Of course, Heather is elated to be finished, and who can blame her. But I love my security blanket. The next step if she is finished with chemo is to continue MRIs and MRSs every 2 months and then slip into every 3 months. What? Another step away from another security? Even Dr. Chang doesn't like losing that security, but eventually it is what we want - I guess. It means good news, not bad. But it is scary.
Interestingly, we again met someone by chance who knows about brain cancer and Dr. Chang. We were looking for the vision clinic for a future appointment for my brother-in-law (which is another scary situation) and we (my sister and Heather and I) were somewhat lost at UCSF. We finally found the ocular-oncologist's office but could not find our way out. We bumped into a nice woman who helped us out of the maze. As we were walking, she asked the usual questions and found out we had originally seen Dr. Chang. She shared with us that Dr. Chang kept her husband alive for 17 years with Anaplastic Astrocytoma. I did not ask when her husband died, but I did hear "alive for 17 years"! In 17 more years, I firmly believe there will be a cure and Heather will be BEAT this ugly monster!
Speaking of "monster," we are prepping for the 2nd annual Monster Bash. We are so pleased to have Old Chicago (Rock Bottom in some areas of the country) host this event and to have Chasing Daylight provide the live entertainment. Thursday, October 29 will be a big night for Leap-for-a-Cure. I will certainly be writing about it next blog. If you are interested in attending, just go to the "events" tab on our website for more information.
Our church - Hope Presbyterian - will be having a special cancer service on Sunday, October 18. We were honored that Pastor Dave asked for our input. I know the services will focus on hope and miracle, which is exactly what cancer patients and the families need.
This summer Dr. Chang has agreed to come to Omaha for a conference. She will be presenting to two different audiences: one for doctors and one for lay people. I will be working with Methodist Hospital and Estabrook Cancer Center for this BIG event! More on that later. But what brought a gulp and some tears was when Dr. Chang asked that we schedule it around Heather's wedding so that she can attend the wedding. If I could only begin to share my gratitude to and admiration for Dr. Chang . . . I will NEVER forget her and will ALWAYS admire her conviction to curing / treating brain cancer.
Until next entry, I wish everyone health and happiness. Today, I leave you with a poem that is fitting for all who have been diagnosed with cancer:
Cancer is so limited.
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.
What chance does cancer have with so many limitations?
The compromise? Monitor Heather's blood weekly and make the final decision in 4 weeks. Of course, Heather is elated to be finished, and who can blame her. But I love my security blanket. The next step if she is finished with chemo is to continue MRIs and MRSs every 2 months and then slip into every 3 months. What? Another step away from another security? Even Dr. Chang doesn't like losing that security, but eventually it is what we want - I guess. It means good news, not bad. But it is scary.
Interestingly, we again met someone by chance who knows about brain cancer and Dr. Chang. We were looking for the vision clinic for a future appointment for my brother-in-law (which is another scary situation) and we (my sister and Heather and I) were somewhat lost at UCSF. We finally found the ocular-oncologist's office but could not find our way out. We bumped into a nice woman who helped us out of the maze. As we were walking, she asked the usual questions and found out we had originally seen Dr. Chang. She shared with us that Dr. Chang kept her husband alive for 17 years with Anaplastic Astrocytoma. I did not ask when her husband died, but I did hear "alive for 17 years"! In 17 more years, I firmly believe there will be a cure and Heather will be BEAT this ugly monster!
Speaking of "monster," we are prepping for the 2nd annual Monster Bash. We are so pleased to have Old Chicago (Rock Bottom in some areas of the country) host this event and to have Chasing Daylight provide the live entertainment. Thursday, October 29 will be a big night for Leap-for-a-Cure. I will certainly be writing about it next blog. If you are interested in attending, just go to the "events" tab on our website for more information.
Our church - Hope Presbyterian - will be having a special cancer service on Sunday, October 18. We were honored that Pastor Dave asked for our input. I know the services will focus on hope and miracle, which is exactly what cancer patients and the families need.
This summer Dr. Chang has agreed to come to Omaha for a conference. She will be presenting to two different audiences: one for doctors and one for lay people. I will be working with Methodist Hospital and Estabrook Cancer Center for this BIG event! More on that later. But what brought a gulp and some tears was when Dr. Chang asked that we schedule it around Heather's wedding so that she can attend the wedding. If I could only begin to share my gratitude to and admiration for Dr. Chang . . . I will NEVER forget her and will ALWAYS admire her conviction to curing / treating brain cancer.
Until next entry, I wish everyone health and happiness. Today, I leave you with a poem that is fitting for all who have been diagnosed with cancer:
Cancer is so limited.
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.
What chance does cancer have with so many limitations?
Monday, September 21, 2009
What Next? Or, Where to Begin?
So much has happened in the past four weeks that I'm not certain I can write in a logical manner. All has happened since my father-in-law's passing or started during his illness.
Heather and Mike have decided to get married. We are thrilled that they will be taking the next step in their relationship. They have certainly shared more intimate challenges than many couples have to face for years and years, so I believe they are a strong couple. Planning a "simple" wedding is starting to be fun and certainly takes our minds off the brain cancer. These two deserve something fun and memorable and positive to plan. Date will either be July 31 or August 7. We are waiting for another couple to decide on their date at the UNO Alumni House. Mike and Heather are 2nd in line for July 31. We should know by Wednesday. Next? Heather has chosen her wedding gown and attendants' dresses - at least her first choice. Flowers: Gerber Daisies. The colors should be so bright and hopeful.
During all this excitement, we have been working on Monster Bash, which is Thursday, October 29 at the downtown Old Chicago Restaurant. Check out the "events" link on our website for more information. Jon has been working hard to obtain Silent Auction items, and he has done well. In addition, we obtained free garage parking for the evening when Monster Bash attendees present a voucher. The band "Chasing Daylight" will be playing; and good food, a special brewed beer, costume contest, and raffle prizes will be available. We are so excited for our 2nd Annual Monster Bash.
On October 4, Bike Masters at 129/Fort will be hosting a bike ride in memory of Seth Embrey, who lost his battle with brain cancer last spring. Interestingly, Seth and Heather went to elementary school together. The bike ride is a 100, 62, or 30 mile ride. Entry is free, but LFAC donations are suggested. LFAC is honored to support another meaningful event for brain cancer awareness. For more information, see the "events" link on our website.
"Wear Gray for a Day" celebrated its second year on Friday, October 18. From Omaha to Atlanta to several other areas in the United States, the event was honored. Many cancer groups and organizations tweeted about this event for weeks prior. I heard from one person today who has asked to be become involved after her friend wore gray on Friday. Another business contacted us about supporting our cause. Time will tell how many people may have been touched, but one person more is a step forward.
Heather has been feeling fairly well. However, her platelets and white cell counts were too low last week for her chemo. So, she was supposed to try again today, but she came down with the flu late Saturday night. She was sick all day Sunday and began running a steady fever early Sunday night. After a phone call to the oncologist, we were off to the ER. SIX HOURS later (4:30 am to be exact) we were home. She received a Nupergen shot, another antibiotic, and Tamiflu - but no pneumonia. They tried to do a flu test on her - tube inserted through the nose to goodness knows where - but Heather did not fare too well. We decided that we did not care what flu she has since all Type As are treated the same. The fever remains, so no work for a few days. She must remain fever free for 48 hours. I did not feel so great when the medical personnel looked at me and said, "You will be getting this." We are all on Tamiflu.
Lastly, my friend wrote on my facebook: Stop asking, "What next?" I think I am going to adhere to her advice. My sister's husband, Matt, is undergoing testing to determine what is going on with his eyes. He has been told anything from an infection to an autoimmune disease to ocular lymphoma. The infection has been almost 100% ruled out, but the other two remain the focus. As Matt said, "I don't know what one I'm hoping for." This situation has been very stressful for my sister and her husband - obviously. Waiting seems forever, but in the medical world, "it" has been moving quickly. Five weeks has seemed like five months. Now they have to wait another two week for all tests to be analyzed and reported. Heather and I stay with them while we are in San Fransisco, and now Matt is also going to UCSF. In fact, his doctor is the office directly below Heather's doctor.
I think that is about "it" for now. As I mentioned, Heather and I head to SF on Tuesday, October 6; her appointments are on October 7; and we return on October 8. I have several new questions to ask as we begin to think about Heather ending her chemo in December. I think it will be bittersweet. Ending the chemo and beginning a normal life again, but also ending the chemo that has kept the tumor from growing - as I said, "bittersweet."
Updated Information:
An experimental drug derived from cottonseed proved effective in hindering the growth of the type of brain cancer that caused Ted Kennedy’s death. The drug completed Phase II clinical trials under the direction of researchers at the University of Alabama at Birmingham (UAB).
The American Cancer Society estimates that 21,000 Americans are diagnosed each year with brain tumors. Of these about 10,000 are glioblastomas. A glioma is any tumor that forms in the glial brain cells, the most abundant cells in the central nervous system. Glioma is not a specific type of cancer but a category of brain tumor that includes glioblastoma multiforme, astrocytomas, oligodendrogliomas, and ependymomas.
Heather and Mike have decided to get married. We are thrilled that they will be taking the next step in their relationship. They have certainly shared more intimate challenges than many couples have to face for years and years, so I believe they are a strong couple. Planning a "simple" wedding is starting to be fun and certainly takes our minds off the brain cancer. These two deserve something fun and memorable and positive to plan. Date will either be July 31 or August 7. We are waiting for another couple to decide on their date at the UNO Alumni House. Mike and Heather are 2nd in line for July 31. We should know by Wednesday. Next? Heather has chosen her wedding gown and attendants' dresses - at least her first choice. Flowers: Gerber Daisies. The colors should be so bright and hopeful.
During all this excitement, we have been working on Monster Bash, which is Thursday, October 29 at the downtown Old Chicago Restaurant. Check out the "events" link on our website for more information. Jon has been working hard to obtain Silent Auction items, and he has done well. In addition, we obtained free garage parking for the evening when Monster Bash attendees present a voucher. The band "Chasing Daylight" will be playing; and good food, a special brewed beer, costume contest, and raffle prizes will be available. We are so excited for our 2nd Annual Monster Bash.
On October 4, Bike Masters at 129/Fort will be hosting a bike ride in memory of Seth Embrey, who lost his battle with brain cancer last spring. Interestingly, Seth and Heather went to elementary school together. The bike ride is a 100, 62, or 30 mile ride. Entry is free, but LFAC donations are suggested. LFAC is honored to support another meaningful event for brain cancer awareness. For more information, see the "events" link on our website.
"Wear Gray for a Day" celebrated its second year on Friday, October 18. From Omaha to Atlanta to several other areas in the United States, the event was honored. Many cancer groups and organizations tweeted about this event for weeks prior. I heard from one person today who has asked to be become involved after her friend wore gray on Friday. Another business contacted us about supporting our cause. Time will tell how many people may have been touched, but one person more is a step forward.
Heather has been feeling fairly well. However, her platelets and white cell counts were too low last week for her chemo. So, she was supposed to try again today, but she came down with the flu late Saturday night. She was sick all day Sunday and began running a steady fever early Sunday night. After a phone call to the oncologist, we were off to the ER. SIX HOURS later (4:30 am to be exact) we were home. She received a Nupergen shot, another antibiotic, and Tamiflu - but no pneumonia. They tried to do a flu test on her - tube inserted through the nose to goodness knows where - but Heather did not fare too well. We decided that we did not care what flu she has since all Type As are treated the same. The fever remains, so no work for a few days. She must remain fever free for 48 hours. I did not feel so great when the medical personnel looked at me and said, "You will be getting this." We are all on Tamiflu.
Lastly, my friend wrote on my facebook: Stop asking, "What next?" I think I am going to adhere to her advice. My sister's husband, Matt, is undergoing testing to determine what is going on with his eyes. He has been told anything from an infection to an autoimmune disease to ocular lymphoma. The infection has been almost 100% ruled out, but the other two remain the focus. As Matt said, "I don't know what one I'm hoping for." This situation has been very stressful for my sister and her husband - obviously. Waiting seems forever, but in the medical world, "it" has been moving quickly. Five weeks has seemed like five months. Now they have to wait another two week for all tests to be analyzed and reported. Heather and I stay with them while we are in San Fransisco, and now Matt is also going to UCSF. In fact, his doctor is the office directly below Heather's doctor.
I think that is about "it" for now. As I mentioned, Heather and I head to SF on Tuesday, October 6; her appointments are on October 7; and we return on October 8. I have several new questions to ask as we begin to think about Heather ending her chemo in December. I think it will be bittersweet. Ending the chemo and beginning a normal life again, but also ending the chemo that has kept the tumor from growing - as I said, "bittersweet."
Updated Information:
An experimental drug derived from cottonseed proved effective in hindering the growth of the type of brain cancer that caused Ted Kennedy’s death. The drug completed Phase II clinical trials under the direction of researchers at the University of Alabama at Birmingham (UAB).
The American Cancer Society estimates that 21,000 Americans are diagnosed each year with brain tumors. Of these about 10,000 are glioblastomas. A glioma is any tumor that forms in the glial brain cells, the most abundant cells in the central nervous system. Glioma is not a specific type of cancer but a category of brain tumor that includes glioblastoma multiforme, astrocytomas, oligodendrogliomas, and ependymomas.
Sunday, August 30, 2009
RIP
It's been a month since I have added to this blog, and a lot has happened since then. First, Heather is fine. She has the monthly low white cell count followed with her Neupogen shot, or as in some months - shots. She is getting so much better getting those. The last two months she has begun to battle low platlet counts, but she always seems to get those back up. If all goes well, she only has four more months of Temador. However, I have now begun to worry about the "what next?" phase of our life. Heather's next visit with Dr. Chang is October 7, so we will once again be waiting with baited breath for good news.
With Ted Kennedy's passing, a new surge in brain cancer awareness has risen. Our "Wear Gray for a Day" event has taken a life of its own - from Omaha, to St. Louis, to Atlanta, to many other areas, September 18 may see a lot of gray everywhere! Proudly wearing gray and letting people know why is what we need to spread the word that awareness and research is a must for brain cancer. No insurance plan in the world is good enough if a cure is not found.
Instead of ending with brain cancer information, I am going to end with a reflection. This past month has brought our family some sadness. Jon's father passed away on Saturday, August 29 after brief complications from various aging issues. The weeks have been stressful for the family as we tried to provide comfort for the pain and reassurance for the unknown. His father has always been "fiesty," and he lived that until the very end. We will all miss the family patriarch and one of Heather's constant supporters. He loved her - and all his grandchildren - very much. RIP Charles Marvin Roberts!
With Ted Kennedy's passing, a new surge in brain cancer awareness has risen. Our "Wear Gray for a Day" event has taken a life of its own - from Omaha, to St. Louis, to Atlanta, to many other areas, September 18 may see a lot of gray everywhere! Proudly wearing gray and letting people know why is what we need to spread the word that awareness and research is a must for brain cancer. No insurance plan in the world is good enough if a cure is not found.
Instead of ending with brain cancer information, I am going to end with a reflection. This past month has brought our family some sadness. Jon's father passed away on Saturday, August 29 after brief complications from various aging issues. The weeks have been stressful for the family as we tried to provide comfort for the pain and reassurance for the unknown. His father has always been "fiesty," and he lived that until the very end. We will all miss the family patriarch and one of Heather's constant supporters. He loved her - and all his grandchildren - very much. RIP Charles Marvin Roberts!
Friday, August 7, 2009
Cure Cancer!
Once again we are blessed with good news. Heather's tumor has not grown and the scar tissue is not as enhanced as before. Dr. Chang said, "This scan is the best I could hope for." We will take it!
For the first time I did not go to San Fransisco with Heather; Jon went instead. School has resumed and I had some meetings I should not miss - new technology that is generations ahead of me! Anyway, even though I knew she was safe with Jon and my sister, I wanted to be there. Once I was on speaker phone and heard Dr. Chang's message, all was good. Then I wanted to be there to help celebrate. Oh well. . .
The plan remains as last time: Temador through December. I am very nervous for her to go off Temador because things are going so well on it. In fact, she handled her tiredness better this time I think. She will see Dr. Chang in October, December, February, and then every three months instead of two if all goes well. That will be another adjustment for us.
In the meantime, we continue to pray for new advancements in treating this aggressive form of brain cancer. I know there are studies and trials all the time, but we need one that WORKS! So I'm thinking, a cure for ALL cancers would be awesome! Never settle, so let's go for the best.
Heather likes her new job and the people with whom she works. She is so lucky to have a job and to work with such a great group of doctors, nurses, and medical support staff. She feels at home.
Some other exciting news: Old Chicago (downtown) is sponsoring Monster Bash Thursday, October 29. Doors open at 6:30, $20 per person, appetizers, live band, costume contest, raffles, and silent auction - it should be tons of fun! In addition, instead of drink tickets this year, we are offering a special brew (made just for Monster Bash) and it will be free! Can't beat that offer. More information will be posted on the "events" link on the website soon. Old Chicago is preparing posters and t-shirts.
Other good news: "Wear Gray for a Day" on Friday, September 18. If your business would like to participate, let me know. LFAC will provide stickers to wear and raffle prizes for the office. Someone in Atlanta is promoting this same event, so it's our first step for a national effort. WEAR GRAY on September 18 and show your support for brain cancer awareness!
Again, we are so excited about Heather's report. She is fighting to win this war, and I think she will succeed. Have you tried to cross her before? I don't think even brain cancer wants to do that! Thank you for all your prayers; please keep them coming. I believe in the power of prayer, and I believe it is working for Heather. And as you are praying for her, please add Bob Sitzman to your list. He is currently fighting his battle with recurring lymphoma, and he needs the power of pray to work for him too. Pray for a cure for cancer.
In closing, I find a spark of hope in the following:
The different ways that patients respond to drugs make brain cancer hard to treat, but a new way to analyze brain tumors could help pinpoint which patients will benefit from a newly-approved drug.Bronnie McNabb underwent surgery, radiation and chemotherapy to fight brain tumors, but he always developed new ones. Since taking the new drug Avastin, however, his tumors are gone. "This is probably the best I have felt since this (cancer) first came on," McNabb said.
Although Avastin worked for McNabb, about half of patients with recurring cancer don't respond to it. A new way to analyze brain scans, developed by researchers at the University of California-Los Angeles, could help determine which tumors might respond to Avastin. Some glioblastoma tumors – the deadliest form of brain cancer – are more solid, while others contain more moving water, according to researchers' findings published in the July issue of Radiology.
"What we're looking at is the movement of water molecules within the tumor," explained Dr. Whitney Pope, director of radiology resident research at UCLA. "And what we've found is that tumors that have a lot of water molecules due to the death of cells within the tumor, those are tumors that respond well to Avastin."
Glioblastoma strikes about 12,000 Americans a year. When every day counts, knowing if tumors will respond to certain drugs is critical. "I've gone several months beyond what they told me would be my outside length of time to survive," McNabb said.
Researchers hope that one day they'll be able to tell exactly which tumors will respond to Avastin and other cancer-fighting drugs.
For the first time I did not go to San Fransisco with Heather; Jon went instead. School has resumed and I had some meetings I should not miss - new technology that is generations ahead of me! Anyway, even though I knew she was safe with Jon and my sister, I wanted to be there. Once I was on speaker phone and heard Dr. Chang's message, all was good. Then I wanted to be there to help celebrate. Oh well. . .
The plan remains as last time: Temador through December. I am very nervous for her to go off Temador because things are going so well on it. In fact, she handled her tiredness better this time I think. She will see Dr. Chang in October, December, February, and then every three months instead of two if all goes well. That will be another adjustment for us.
In the meantime, we continue to pray for new advancements in treating this aggressive form of brain cancer. I know there are studies and trials all the time, but we need one that WORKS! So I'm thinking, a cure for ALL cancers would be awesome! Never settle, so let's go for the best.
Heather likes her new job and the people with whom she works. She is so lucky to have a job and to work with such a great group of doctors, nurses, and medical support staff. She feels at home.
Some other exciting news: Old Chicago (downtown) is sponsoring Monster Bash Thursday, October 29. Doors open at 6:30, $20 per person, appetizers, live band, costume contest, raffles, and silent auction - it should be tons of fun! In addition, instead of drink tickets this year, we are offering a special brew (made just for Monster Bash) and it will be free! Can't beat that offer. More information will be posted on the "events" link on the website soon. Old Chicago is preparing posters and t-shirts.
Other good news: "Wear Gray for a Day" on Friday, September 18. If your business would like to participate, let me know. LFAC will provide stickers to wear and raffle prizes for the office. Someone in Atlanta is promoting this same event, so it's our first step for a national effort. WEAR GRAY on September 18 and show your support for brain cancer awareness!
Again, we are so excited about Heather's report. She is fighting to win this war, and I think she will succeed. Have you tried to cross her before? I don't think even brain cancer wants to do that! Thank you for all your prayers; please keep them coming. I believe in the power of prayer, and I believe it is working for Heather. And as you are praying for her, please add Bob Sitzman to your list. He is currently fighting his battle with recurring lymphoma, and he needs the power of pray to work for him too. Pray for a cure for cancer.
In closing, I find a spark of hope in the following:
The different ways that patients respond to drugs make brain cancer hard to treat, but a new way to analyze brain tumors could help pinpoint which patients will benefit from a newly-approved drug.Bronnie McNabb underwent surgery, radiation and chemotherapy to fight brain tumors, but he always developed new ones. Since taking the new drug Avastin, however, his tumors are gone. "This is probably the best I have felt since this (cancer) first came on," McNabb said.
Although Avastin worked for McNabb, about half of patients with recurring cancer don't respond to it. A new way to analyze brain scans, developed by researchers at the University of California-Los Angeles, could help determine which tumors might respond to Avastin. Some glioblastoma tumors – the deadliest form of brain cancer – are more solid, while others contain more moving water, according to researchers' findings published in the July issue of Radiology.
"What we're looking at is the movement of water molecules within the tumor," explained Dr. Whitney Pope, director of radiology resident research at UCLA. "And what we've found is that tumors that have a lot of water molecules due to the death of cells within the tumor, those are tumors that respond well to Avastin."
Glioblastoma strikes about 12,000 Americans a year. When every day counts, knowing if tumors will respond to certain drugs is critical. "I've gone several months beyond what they told me would be my outside length of time to survive," McNabb said.
Researchers hope that one day they'll be able to tell exactly which tumors will respond to Avastin and other cancer-fighting drugs.
Friday, July 24, 2009
On August 5, Heather heads to San Francisco again for another appointment with Dr. Chang. As always, now is the time that I start to think too much about it - this time even more. For the first time, I won't be going with Heather. And, it is already driving me crazy. However, Jon will be with her the entire time, so she will be in good hands, but I want to be there too. I don't feel I can miss the first two days of school without getting far behind before we even start, so I opted out this trip.
Heather's white cell count was low again; in fact, the lowest for her yet. But the nupergen shots seem to work so far, so the chemo can continue. Her red count is also down, but that just means she will sleep more. Today she had a problem with her infusion - arm swelling from vein popping - so she was a sad sack for a while. But, the trooper that she is - off to work after a quick recuperation at the oncology infusion site.
Speaking of off to work, she has been in training for about two weeks now. I think she will be "cut loose" soon to tackle it on her own. The best part of this job? She works with the two doctors who I continue to praise for saving her life: Dr. Denman and Dr. Daryani.
While it is sometimes easy to slip into a routine, we are always reminded of the fight so many people are battling every day. Heather is one of millions who have a life-threatening disease, and one of thousands who is battling brain cancer. From young to old, cancer of all types attacks its victims. Brain cancer has had few new treatment developments in over a decade, so it is "our" turn to see some new advancements in diagnosis and treatment.
As for LFAC, we are in the beginning stages of our 2009 - 2010 fundraising efforts. WEAR GRAY FOR A DAY is September 18. Anyone wanting a sticker to wear for the day, please contact me (sue.leapforacure@gmail.com or jonroberts402@msn.com). We will send the sticker and information to anyone who is interested in participating. Monster Bash is being planned as well. Soon, more information will be posted on the events link. Another UNO Hockey event is in the works - who can we get to shave his / her head????? The car show crashed this year, but I think we can get one going for June 2010. And, a bike ride is being planned for fall 2010! We won't stop until a cure is found.
Instead of posting brain cancer information this time, I am going to close with a link that has a ton of information / stories about brain cancer: http://www.greyribboncrusade.org/ LFAC is a proud member.
Heather's white cell count was low again; in fact, the lowest for her yet. But the nupergen shots seem to work so far, so the chemo can continue. Her red count is also down, but that just means she will sleep more. Today she had a problem with her infusion - arm swelling from vein popping - so she was a sad sack for a while. But, the trooper that she is - off to work after a quick recuperation at the oncology infusion site.
Speaking of off to work, she has been in training for about two weeks now. I think she will be "cut loose" soon to tackle it on her own. The best part of this job? She works with the two doctors who I continue to praise for saving her life: Dr. Denman and Dr. Daryani.
While it is sometimes easy to slip into a routine, we are always reminded of the fight so many people are battling every day. Heather is one of millions who have a life-threatening disease, and one of thousands who is battling brain cancer. From young to old, cancer of all types attacks its victims. Brain cancer has had few new treatment developments in over a decade, so it is "our" turn to see some new advancements in diagnosis and treatment.
As for LFAC, we are in the beginning stages of our 2009 - 2010 fundraising efforts. WEAR GRAY FOR A DAY is September 18. Anyone wanting a sticker to wear for the day, please contact me (sue.leapforacure@gmail.com or jonroberts402@msn.com). We will send the sticker and information to anyone who is interested in participating. Monster Bash is being planned as well. Soon, more information will be posted on the events link. Another UNO Hockey event is in the works - who can we get to shave his / her head????? The car show crashed this year, but I think we can get one going for June 2010. And, a bike ride is being planned for fall 2010! We won't stop until a cure is found.
Instead of posting brain cancer information this time, I am going to close with a link that has a ton of information / stories about brain cancer: http://www.greyribboncrusade.org/ LFAC is a proud member.
Friday, July 3, 2009
Good News is Sometimes "Relative"
Heather finished her June chemo, and she actually handled it quite well. Her white blood cell count was a bit low again, so another shot. The shots make her bones ache, so her back suffered a bit. However, it is now Friday - 5 days from last chemo pill and 4 days from last shot. She seems to have managed both, but she is tired (slept until 11:00 this morning!).
Her left side continues to be a bit weaker - a bit less coordinated? - than her right side. As she and I were walking the other night, her dog Sky started running from firework noises. Heather tried to run - OK, it was funny in a sick way - but she looked something like the Hunchback of Norte Dame. Thank goodness she kept it all under control!
Her good news is that she got a job! She begins the paperwork on Monday, July 6 with training to follow. I know she is excited about where she will be working, but the pay is low. So, she has started free-lancing and seems to enjoy it so far. We will see.
Our dear friend Bob, whose situation was noted in my last entry, finally received his updated cancer information. Again, good news is relative. His lymphoma is in his stomach and right kidney. Yes, it could be worse; for that we are all grateful. However, it could be better; for that we are sad. Our entire "clan" will be there supporting Bob and Robyn.
As July 4 approaches tomorrow, we celebrate our independence and once again thank all past, present, and future military personnel who protect it.
Brain Cancer Information: Brain tumors are unique because they occur in the skull -- a confined space with rigid walls. A brain tumor takes up space normally allocated to the brain. As the tumor continues to grow, it pushes aside or compresses the brain. This can cause a build up of pressure in the skull that leads to symptoms such as headaches, seizures and strokes. Brain tumor treatment is designed to eliminate the tumor or reduce tumor size, thus allowing the surrounding brain to resume its normal functions.
Her left side continues to be a bit weaker - a bit less coordinated? - than her right side. As she and I were walking the other night, her dog Sky started running from firework noises. Heather tried to run - OK, it was funny in a sick way - but she looked something like the Hunchback of Norte Dame. Thank goodness she kept it all under control!
Her good news is that she got a job! She begins the paperwork on Monday, July 6 with training to follow. I know she is excited about where she will be working, but the pay is low. So, she has started free-lancing and seems to enjoy it so far. We will see.
Our dear friend Bob, whose situation was noted in my last entry, finally received his updated cancer information. Again, good news is relative. His lymphoma is in his stomach and right kidney. Yes, it could be worse; for that we are all grateful. However, it could be better; for that we are sad. Our entire "clan" will be there supporting Bob and Robyn.
As July 4 approaches tomorrow, we celebrate our independence and once again thank all past, present, and future military personnel who protect it.
Brain Cancer Information: Brain tumors are unique because they occur in the skull -- a confined space with rigid walls. A brain tumor takes up space normally allocated to the brain. As the tumor continues to grow, it pushes aside or compresses the brain. This can cause a build up of pressure in the skull that leads to symptoms such as headaches, seizures and strokes. Brain tumor treatment is designed to eliminate the tumor or reduce tumor size, thus allowing the surrounding brain to resume its normal functions.
Thursday, June 18, 2009
Heather's Turn
Oh, the lessons we learn in life! As many already know, Heather's place of employment closed its doors on Monday, June 8. The people who have been so supportive, so flexible, so everything - Ted and Kathy Baer - could not keep the doors open. Heather felt - and still feels - so sorry for them. They are the hardest working people she knows, other than Bob Sitzman (who will be a part of this in a bit). I think Heather felt as bad for Ted and Kathy as she did for herself not having a job - and of course, INSURANCE! OK - panic for a few days until we found some insurance that she cannot afford, but mom and dad can. Because the doors closed and the business is no longer, COBRA was not an option. Now, Heather is pounding the streets - well, sort of - to find another job. She has had two interviews for the same position and will know next Tuesday if we can celebrate. Otherwise, there has been little to no activity. YIKES.
But, once again, we look at this situation as just another curve ball. Life is filled with them and it is how we react to those balls that make us who we are. Laughter, togetherness, commitment, prayer - they all work wonders, especially in times of need. How does this make it "Heather's Turn"? Jon's best friend in the world and our girls' "second dad" - Bob Sitzman - is going to go through his cancer battle again. He survived mantle cell lymphoma treatment - a chemo cocktail and bone marrow transplant almost 5 years ago. But today, he received the diagnosis that it has returned in his stomach. Bob and Robyn have been there for us and for Heather every step in our journey, much like we were there in Bob's last journey. Bob gave Heather the courage to fight her cancer and the support of knowledge about treatment. It is now Heather's turn to support Bob again, but this time she knows so much more than she did before. He has been her mentor; now she must show him what she has learned from him. Their bond is strong.
Jon and I know so much more this time around as well. Where we may have fallen short last time, we will not fall this time. Morning - noon - night: we will be there for Bob and Robyn!
As Heather begins her next round of chemo on Wednesday, she and Bob will be facing it together. As we pray for Heather's success, we also pray for Bob's. Both of these people deserve to share their special gifts with the world for many years to come.
Now, for some brain cancer information:
Gliomas arise from the "gluey," or supportive tissue of the brain. There are several different types of gliomas. The type of glioma is determined by the cells that give rise to the tumor. Astrocytoma, oligodendroglioma, glioblastoma, oligoastrocytoma are all examples of gliomas. Glioblastoma multiforme, anaplastic astrocytoma, and higher grade oligodendrogliomas are referred to as "high grade gliomas."
But, once again, we look at this situation as just another curve ball. Life is filled with them and it is how we react to those balls that make us who we are. Laughter, togetherness, commitment, prayer - they all work wonders, especially in times of need. How does this make it "Heather's Turn"? Jon's best friend in the world and our girls' "second dad" - Bob Sitzman - is going to go through his cancer battle again. He survived mantle cell lymphoma treatment - a chemo cocktail and bone marrow transplant almost 5 years ago. But today, he received the diagnosis that it has returned in his stomach. Bob and Robyn have been there for us and for Heather every step in our journey, much like we were there in Bob's last journey. Bob gave Heather the courage to fight her cancer and the support of knowledge about treatment. It is now Heather's turn to support Bob again, but this time she knows so much more than she did before. He has been her mentor; now she must show him what she has learned from him. Their bond is strong.
Jon and I know so much more this time around as well. Where we may have fallen short last time, we will not fall this time. Morning - noon - night: we will be there for Bob and Robyn!
As Heather begins her next round of chemo on Wednesday, she and Bob will be facing it together. As we pray for Heather's success, we also pray for Bob's. Both of these people deserve to share their special gifts with the world for many years to come.
Now, for some brain cancer information:
Gliomas arise from the "gluey," or supportive tissue of the brain. There are several different types of gliomas. The type of glioma is determined by the cells that give rise to the tumor. Astrocytoma, oligodendroglioma, glioblastoma, oligoastrocytoma are all examples of gliomas. Glioblastoma multiforme, anaplastic astrocytoma, and higher grade oligodendrogliomas are referred to as "high grade gliomas."
Sunday, June 7, 2009
Blessed Again :)
Our trip to UCSF Medical Center could not have been better - which is relative, I know. Dr. Chang told us that Heather's tumor does not appear to have changed. In addition, the enhanced area around the tumor seems to be smaller than two months ago. With that said, there is always caution involved; however, we are VERY pleased and happy with that information.
Another good piece of information: Heather has only six months of chemo left. We were told by another doctor that some people remain on Temador for 4 - 5 years if their body can handle it. Somehow, the conversation lead us to believe that was the goal for Heather. Anyway, Dr. Chang told us that Heather is being treated aggressively, so we will hopefully be able to remain on Temador for one year if her body tolerates it. She has completed 6 of the 12 months. She will also continue to see Dr. Chang every two months. After she is off Temador for two months, she will again see Dr. Chang in two months. Then, if all goes well, Heather will start seeing Dr. Chang every three months.
Now, what does the future hold? Heather's type of brain cancer will grow again one day. However, as I wrote and told Casey William (a young MWHS graduate who now lives in LA and has just been diagnosed with giloblastoma multiforme) last night, that day does not have to be soon! We believe that new successful treatments are just around the corner. We believe Heather will beat this. We believe it is brain cancer's turn for a cure!
As I read Casey's blog, I became motivated once again to spread the word about brain cancer awareness. He too is asking that we spread the need for awareness. I feel LFAC has that mission covered, so we better get going again.
As always, thank you to those who faithfully read about Heather's Journey. I am going to start closing each entry with some brain cancer information:
Gliomas arise from the glial, or supportive, cells in the brain. There are different types of gliomas. Astrocytomas are gliomas arising from “star-shaped” cells called astrocytes. Oligodendrogliomas arise from “fried-egg shaped” cells called oligodendrocytes. Ependymomas arise from “corn-kernel shaped” cells called ependymal cells. When the specific tumor diagnosis is made by the pathologist, the tumor is also “graded.” This number grade is based on how normal – or abnormal – the tumor cells appear when examined under a microscope. Grade I tumor cells look slightly unusual when compared to normal brain tissue cells. On the other end of the scale, grade IV tumor cells appear to be very abnormal. In this four tier system, grade I tumors are called “benign,” grade II tumors are called “low-grade,” grade III (or anaplastic) and grade IV (or glioblastoma) tumors are called “high grade” tumors.
Another good piece of information: Heather has only six months of chemo left. We were told by another doctor that some people remain on Temador for 4 - 5 years if their body can handle it. Somehow, the conversation lead us to believe that was the goal for Heather. Anyway, Dr. Chang told us that Heather is being treated aggressively, so we will hopefully be able to remain on Temador for one year if her body tolerates it. She has completed 6 of the 12 months. She will also continue to see Dr. Chang every two months. After she is off Temador for two months, she will again see Dr. Chang in two months. Then, if all goes well, Heather will start seeing Dr. Chang every three months.
Now, what does the future hold? Heather's type of brain cancer will grow again one day. However, as I wrote and told Casey William (a young MWHS graduate who now lives in LA and has just been diagnosed with giloblastoma multiforme) last night, that day does not have to be soon! We believe that new successful treatments are just around the corner. We believe Heather will beat this. We believe it is brain cancer's turn for a cure!
As I read Casey's blog, I became motivated once again to spread the word about brain cancer awareness. He too is asking that we spread the need for awareness. I feel LFAC has that mission covered, so we better get going again.
As always, thank you to those who faithfully read about Heather's Journey. I am going to start closing each entry with some brain cancer information:
Gliomas arise from the glial, or supportive, cells in the brain. There are different types of gliomas. Astrocytomas are gliomas arising from “star-shaped” cells called astrocytes. Oligodendrogliomas arise from “fried-egg shaped” cells called oligodendrocytes. Ependymomas arise from “corn-kernel shaped” cells called ependymal cells. When the specific tumor diagnosis is made by the pathologist, the tumor is also “graded.” This number grade is based on how normal – or abnormal – the tumor cells appear when examined under a microscope. Grade I tumor cells look slightly unusual when compared to normal brain tissue cells. On the other end of the scale, grade IV tumor cells appear to be very abnormal. In this four tier system, grade I tumors are called “benign,” grade II tumors are called “low-grade,” grade III (or anaplastic) and grade IV (or glioblastoma) tumors are called “high grade” tumors.
Saturday, May 16, 2009
Spirit of Phillanthropy
On April 28, 2009, Leap-for-a-Cure was honored at the annual "Friends of the Foundation" event. At first, I was not certain what it was all about, but the more I learned, the greater my appreciation.
So many people are deserving of such awards, and in our first year of fundraising, we were one of three who were honored. As I looked around the room, the magnitude of the event finally reached its peak. All I can say is "WOW!" Soon the DVD will be downloaded to our website.
Heather is doing well. She finished her chemo and has been off for two weeks. Her white cell count is down, so she had to have another Neupogen shot, and Heather HATES shots! She is tired all the time, but she still functions in a daily routine for about two weeks a month. During her chemo (5 days), she is exhausted and sleeps about 18 hours or more a day. Then she remains tired for about 10 days, begins to perk up for about 7 days, and then is good for about 6 days when her chemo starts over again.
One minor concern is that Heather is starting to have some headaches, but the oncologist thinks they are from sinus issues, not from brain cancer. Her next MRI is in about 3 weeks, so that is reassuring.
We head to SF in early June for a fun-day Thursday before the Friday of medical appointments. The trip is short as we return on Saturday. Our trips have become routine, so our biggest job is deciding what to do and where to go the day before the appointment. We are currently in our planning stages for this next visit. Michele is going to join us as well.
My friend Robyn and I are in the beginning stages of planning a "Bike for Brain Cancer" for the 2010 fall. We THINK we understand the amount of work behind it, but once again, we are probably naive, which in our case is good. I will have to keep you posted on this endeavor!
Thank you to the faithful who read about Heather's journey. I still feel it is part therapy for me to share my thoughts and ideas. I also pray that this blog continues for YEARS and YEARS to come because I won't stop until Heather is cured.
So many people are deserving of such awards, and in our first year of fundraising, we were one of three who were honored. As I looked around the room, the magnitude of the event finally reached its peak. All I can say is "WOW!" Soon the DVD will be downloaded to our website.
Heather is doing well. She finished her chemo and has been off for two weeks. Her white cell count is down, so she had to have another Neupogen shot, and Heather HATES shots! She is tired all the time, but she still functions in a daily routine for about two weeks a month. During her chemo (5 days), she is exhausted and sleeps about 18 hours or more a day. Then she remains tired for about 10 days, begins to perk up for about 7 days, and then is good for about 6 days when her chemo starts over again.
One minor concern is that Heather is starting to have some headaches, but the oncologist thinks they are from sinus issues, not from brain cancer. Her next MRI is in about 3 weeks, so that is reassuring.
We head to SF in early June for a fun-day Thursday before the Friday of medical appointments. The trip is short as we return on Saturday. Our trips have become routine, so our biggest job is deciding what to do and where to go the day before the appointment. We are currently in our planning stages for this next visit. Michele is going to join us as well.
My friend Robyn and I are in the beginning stages of planning a "Bike for Brain Cancer" for the 2010 fall. We THINK we understand the amount of work behind it, but once again, we are probably naive, which in our case is good. I will have to keep you posted on this endeavor!
Thank you to the faithful who read about Heather's journey. I still feel it is part therapy for me to share my thoughts and ideas. I also pray that this blog continues for YEARS and YEARS to come because I won't stop until Heather is cured.
Friday, April 24, 2009
Status Quo
Another UCSF Medical Center trip with "status quo" results. I've come to realize that starting about the week before our SF trip, I start feeling anxious and weepy. I've always heard that people's lives flash before their eyes in life-threatening situations. My life with my children is relived with details nightly, especially the week prior to our trip. I just never want that life to be taken from us.
Heather's two-hour stint in the MRI machine about drove her crazy. Her regular MRIs take about 45 minutes, but adding an MRS adds about another 45 minutes. This trip the machine broke, and Heather had to add another 30 minutes. As most people know, patients must lie perfectly still in an MRI machine. Yuck! She wanted to move, scratch, twitch - but she couldn't if she wanted to get out.
Off to Dr. Chang's office to anxiously await the news of the MRI. Although Dr. Chang did not greet us with a smile as she has done in the past, she did tell us that the MRI suggests no real change. She thinks Heather is sensitive to radiation; therefore, the slight change in the MRI is probably due to radiation effects. The MRS results take a few days.
Upon our return home, Dr. Chang called to tell us that the radiologist also sees some slight changes, but both are believing it is from the radiation for now. So, there will be no changes in medication yet. Dr. Chang will see Heather again on June 5. Every time we hear the word "change," I am worried / concerned. CHANGE is not a good word for us, so until Dr. Chang is 100% confident that this slight change is from radiation, I will continue to stress a little.
But we also had some GREAT hope cross our path. As we were leaving Dr. Chang's office, we wound up in the elevator with a man and his wife. The wife said to Heather, "brain tumor?" Heather nodded, I said brain cancer, and the husband removed his hat to show us his surgical scars. But, his surgery was almost 15 years ago! Diagnosed with GBM, he was given 18 months to live - but 14 years and 7 months later, he is fine and still working as a software engineer. This family has added more hope to our situation. They too have faced this diagnosis with optimism and humor - much like we have. I believe we were destined to meet this wonderful couple. My sister Jill and I quickly gave them each a Leap-for-a-Cure wristband and a heaping helping of THANK YOU and STAY STRONG. Michael logged on to our website and left a quick message on this blog. I am so happy to have met some new hope and people on our journey.
As I end this entry, I keep thinking of all the wonderful people I have met through LFAC. Some day I will have to sit down and figure it all out, but it seems overwhelming to me right now. I struggle with always being tired - maybe a sympathy feeling for Heather? She is always tired because of her medications.
I am confident that the MRS will be fine, so hope that there will not be a new entry soon. We always send our blessings to all who are currently battling this disease and to all who have lost loved ones because of it. Research is so close; I believe better treatments and a cure are on the horizon.
Heather's two-hour stint in the MRI machine about drove her crazy. Her regular MRIs take about 45 minutes, but adding an MRS adds about another 45 minutes. This trip the machine broke, and Heather had to add another 30 minutes. As most people know, patients must lie perfectly still in an MRI machine. Yuck! She wanted to move, scratch, twitch - but she couldn't if she wanted to get out.
Off to Dr. Chang's office to anxiously await the news of the MRI. Although Dr. Chang did not greet us with a smile as she has done in the past, she did tell us that the MRI suggests no real change. She thinks Heather is sensitive to radiation; therefore, the slight change in the MRI is probably due to radiation effects. The MRS results take a few days.
Upon our return home, Dr. Chang called to tell us that the radiologist also sees some slight changes, but both are believing it is from the radiation for now. So, there will be no changes in medication yet. Dr. Chang will see Heather again on June 5. Every time we hear the word "change," I am worried / concerned. CHANGE is not a good word for us, so until Dr. Chang is 100% confident that this slight change is from radiation, I will continue to stress a little.
But we also had some GREAT hope cross our path. As we were leaving Dr. Chang's office, we wound up in the elevator with a man and his wife. The wife said to Heather, "brain tumor?" Heather nodded, I said brain cancer, and the husband removed his hat to show us his surgical scars. But, his surgery was almost 15 years ago! Diagnosed with GBM, he was given 18 months to live - but 14 years and 7 months later, he is fine and still working as a software engineer. This family has added more hope to our situation. They too have faced this diagnosis with optimism and humor - much like we have. I believe we were destined to meet this wonderful couple. My sister Jill and I quickly gave them each a Leap-for-a-Cure wristband and a heaping helping of THANK YOU and STAY STRONG. Michael logged on to our website and left a quick message on this blog. I am so happy to have met some new hope and people on our journey.
As I end this entry, I keep thinking of all the wonderful people I have met through LFAC. Some day I will have to sit down and figure it all out, but it seems overwhelming to me right now. I struggle with always being tired - maybe a sympathy feeling for Heather? She is always tired because of her medications.
I am confident that the MRS will be fine, so hope that there will not be a new entry soon. We always send our blessings to all who are currently battling this disease and to all who have lost loved ones because of it. Research is so close; I believe better treatments and a cure are on the horizon.
Saturday, April 11, 2009
Happy Easter / Passover
Today is Easter. Even though my children are all adults, I still do the Easter baskets. I just finished; it is after midnight; and I am reflecting on many things right now. It is a good time to write.
Heather did not feel well this round of chemo. She was sick with a respiratory infection during her chemo week, so she had to wait a few days. She received her fluids three times instead of the usual two, but she still was nauseous and very tired. I was able to go with her to see Dr. Popa on Friday, and Heather's white cell count is down. We are hoping it is from the chemo and respiratory issues. She seems to feel OK now, so we are crossing our fingers that she beats this and her cell count goes up by next Friday.
She and I are headed to San Francisco again on Sunday, April 19 for the Tuesday, April 21 appointment. Since we always have to include two travel days along with her UCSF appointments, we are always gone for at least three days. So, we are leaving on Sunday so that we can have another "Fun-day Monday" as we had three months ago. Last time was Santa Cruz for the day; so it will be difficult to beat.
Heather's hair is growing back. If you remember, she lost her hair from the radiation, not the chemo. She still has a bald spot on the very top of her head, but the fuzz is there. I asked her today if she wanted to shave her head one more time, but she said no. I think she is planning on the top to fill in sooner than later. I suggested spray paint.
She is currently off of all steroids - 5 days to be exact. Now we are closely monitoring any changes in her coordination, her eye sight, etc. The symptoms that lead to the steroids proved to be from brain swelling, but we are choosing to believe that issue has been handled and is over.
I think we will feel better - as always - once we hear the words "status quo" in San Francisco. I have quit hoping for the word "shrinking" because I have accepted that it won't happen. But, "no new growth" is good news for us. There are some new treatments on the horizon, and we plan for Heather to benefit from them.
As this season of renewal begins, I pray for new hope and new beginnings not only for my daughter, but also for all who suffer from illness, fear, and despair. I pray for belief in what may seem impossible, for we all know that miracles do happen.
God Bless,
Sue
Heather did not feel well this round of chemo. She was sick with a respiratory infection during her chemo week, so she had to wait a few days. She received her fluids three times instead of the usual two, but she still was nauseous and very tired. I was able to go with her to see Dr. Popa on Friday, and Heather's white cell count is down. We are hoping it is from the chemo and respiratory issues. She seems to feel OK now, so we are crossing our fingers that she beats this and her cell count goes up by next Friday.
She and I are headed to San Francisco again on Sunday, April 19 for the Tuesday, April 21 appointment. Since we always have to include two travel days along with her UCSF appointments, we are always gone for at least three days. So, we are leaving on Sunday so that we can have another "Fun-day Monday" as we had three months ago. Last time was Santa Cruz for the day; so it will be difficult to beat.
Heather's hair is growing back. If you remember, she lost her hair from the radiation, not the chemo. She still has a bald spot on the very top of her head, but the fuzz is there. I asked her today if she wanted to shave her head one more time, but she said no. I think she is planning on the top to fill in sooner than later. I suggested spray paint.
She is currently off of all steroids - 5 days to be exact. Now we are closely monitoring any changes in her coordination, her eye sight, etc. The symptoms that lead to the steroids proved to be from brain swelling, but we are choosing to believe that issue has been handled and is over.
I think we will feel better - as always - once we hear the words "status quo" in San Francisco. I have quit hoping for the word "shrinking" because I have accepted that it won't happen. But, "no new growth" is good news for us. There are some new treatments on the horizon, and we plan for Heather to benefit from them.
As this season of renewal begins, I pray for new hope and new beginnings not only for my daughter, but also for all who suffer from illness, fear, and despair. I pray for belief in what may seem impossible, for we all know that miracles do happen.
God Bless,
Sue
Wednesday, March 18, 2009
Day-by-Day
Some times the days seem to slip by smoothly and I forget to update. When things go well, we keep busy and move forward - almost sidelining our situation. However, one little disruption, and everything comes to a halt - only to keep us on our toes.
Slowly, Heather has been weaning from her steroids. All has been going well, including her swollen face slimming a bit. She was down to 1 mg a day when she became light-headed and vision in her right eye was "weird" (her description, not mine). Dr. Popa increased her steroids to 2 mg, which doesn't seem like much. But tonight stomach discomfort began, much like what Heather experienced in January. Back then she had a CT scan to make certain she did not have a blood clot. She recovered with some medication, so we are hoping the discomfort once again goes away and she can continue her steroid weaning.
Heather continues her positive attitude, which is remarkable and a model for all. She keeps busy with work and her house and has even shown interest in making cards / crafts with me. It is difficult to believe that the one-year mark of Heather's diagnosis is just weeks away. What a year we have had, but we have survived and believe 2009 is the year for only GOOD NEWS!!
Slowly, Heather has been weaning from her steroids. All has been going well, including her swollen face slimming a bit. She was down to 1 mg a day when she became light-headed and vision in her right eye was "weird" (her description, not mine). Dr. Popa increased her steroids to 2 mg, which doesn't seem like much. But tonight stomach discomfort began, much like what Heather experienced in January. Back then she had a CT scan to make certain she did not have a blood clot. She recovered with some medication, so we are hoping the discomfort once again goes away and she can continue her steroid weaning.
Heather continues her positive attitude, which is remarkable and a model for all. She keeps busy with work and her house and has even shown interest in making cards / crafts with me. It is difficult to believe that the one-year mark of Heather's diagnosis is just weeks away. What a year we have had, but we have survived and believe 2009 is the year for only GOOD NEWS!!
Saturday, February 28, 2009
Good News Wednesday
Our San Francisco trip left smiles on our faces and strawberry margaritas in our tummies! What looked like new tumor growth and active cancer cells was really residual swelling from the radiation. Heather's MRI displayed the swelling had all but disappeared, so no new tumor growth. The MRS is a good baseline for her next visit, which does not happen for two months - April 21 to be exact.
We had all been on pins-and-needles for the last month after being told what Heather's MRI suggested. I think we all prepared ourselves for bad news and had been thinking about what the next step forward would be. We did not talk about it as much as think about it. Because only positive thoughts enter into our lives, we could not allow our fears to take control. But when we all sat in Dr. Chang's office on Wednesday, our legs were shaking, our smiles at bit forced. Then Dr. Chang wheeled around in her chair with her smile, and I think we knew, but just had to hear the words: Your MRI looks good.
So what does this mean? It means Heather still has her tumor, but it does not appear to be growing. That may not sound like great news, but it is. Heather will always have this stupid tumor and it will someday start to grow again. The cancer cells will become active again; however, if she is on her Temador and it starts to grow, the Temador is designed to attack it. If the tumor grows while she is on Temador, the treatment will be changed. However, so far so good on Temador. And the radiation is designed to work for several months after the treatment ended. So, the swelling was most likely from the radiation (normal) and the radiation could still be killing off some of the tumor, creating dead cells.
She is finally being weaned from her steroids. Once again, we have found some humor in the face of something not in our control. Heather has lead the way to acceptance, and I guess humor is one way to deal with it. Her puffy face and extra weight gain from her high dosage will soon disappear - well maybe in about three months.
Of all the things that Heather has gone through, the puffy face - and maybe the moustache that came with it - has bothered her the most. Mike, her boyfriend of 2 - 1/2 years, has been by her side and has helped to let her know she is beautiful know matter what. Every time I look at her, I see beauty, but I am her mother.
Heather's blood work is fabulous. She has that checked every week. All her doctors - in fact all the medical team treating her - is so proud of her attitude and her inner strength. She has emerged as a role model for anyone who is facing a life-threatening disease. She continues to view this as a bump - OK, a mountain - in the road of life, but she is going to drive over it to see what lies ahead. We remain incredibly proud of her and thankful that she is our daughter.
We had all been on pins-and-needles for the last month after being told what Heather's MRI suggested. I think we all prepared ourselves for bad news and had been thinking about what the next step forward would be. We did not talk about it as much as think about it. Because only positive thoughts enter into our lives, we could not allow our fears to take control. But when we all sat in Dr. Chang's office on Wednesday, our legs were shaking, our smiles at bit forced. Then Dr. Chang wheeled around in her chair with her smile, and I think we knew, but just had to hear the words: Your MRI looks good.
So what does this mean? It means Heather still has her tumor, but it does not appear to be growing. That may not sound like great news, but it is. Heather will always have this stupid tumor and it will someday start to grow again. The cancer cells will become active again; however, if she is on her Temador and it starts to grow, the Temador is designed to attack it. If the tumor grows while she is on Temador, the treatment will be changed. However, so far so good on Temador. And the radiation is designed to work for several months after the treatment ended. So, the swelling was most likely from the radiation (normal) and the radiation could still be killing off some of the tumor, creating dead cells.
She is finally being weaned from her steroids. Once again, we have found some humor in the face of something not in our control. Heather has lead the way to acceptance, and I guess humor is one way to deal with it. Her puffy face and extra weight gain from her high dosage will soon disappear - well maybe in about three months.
Of all the things that Heather has gone through, the puffy face - and maybe the moustache that came with it - has bothered her the most. Mike, her boyfriend of 2 - 1/2 years, has been by her side and has helped to let her know she is beautiful know matter what. Every time I look at her, I see beauty, but I am her mother.
Heather's blood work is fabulous. She has that checked every week. All her doctors - in fact all the medical team treating her - is so proud of her attitude and her inner strength. She has emerged as a role model for anyone who is facing a life-threatening disease. She continues to view this as a bump - OK, a mountain - in the road of life, but she is going to drive over it to see what lies ahead. We remain incredibly proud of her and thankful that she is our daughter.
Sunday, February 8, 2009
WOO-HOO
The UNO/LFAC event was very successful! We raised about $45,000 for Methodist Estabrook Cancer Center. I am so grateful for all the support from friends and businesses and the community. Without all the volunteer time and every single dollar donated, we could not have reached and exceeded Head Coach Mike Kemp's $30,000 goal.
Michele - without you, this event would not have been. We know your plate is full, but you still found time to make certain everything pulled together. We love you and thank you for always being you!
Amy - although you were unable to attend, your constant words of support helped us feel we were always doing well. You have always been very positive with our cause and have celebrated our successes. Thank you!
Mike and Heather - when you were able to be there, you kept the cause close to my heart. I know you wanted the event to be as successful as anyone. Thank you!
Robyn - your artistic and creative ability made our event look professional. And all the work you put into our posters, brochures, donation board, etc. is unmatched by anyone. Your boundless effort to make everything perfect has given Leap-for-a-Cure a boost. Thank you!
Bob - your positive attitude toward everything helps us to keep looking up. Even though you could only be at one game, you could not have chosen a better one. Having you share in the last night met so much to us and to Heather. You are her rock; that is a bond that can never be broken. Thank you!
Jean - your energy with people and connectedness with the community is unmatched. Whenever I am with you, I know smiles and laughter are not far. Your willingness to be "there" at all times is incredible. Thank you!
Jeff - you are our crazy mingling friend. You make everyone feel a part of the "party," so no one feels left out. In addition, you are more perceptive than most people might think; thank you for all your words of wisdom throughout.
Brandi and Jeff - you two were FABULOUS emcees. We could not have asked for any better than you two. Thank you!
Obviously, UNO hockey coaching staff and players - thank you for being so willing to support our cause.
And to all of our other friends and family who volunteered time to help our effort, THANK YOU!
Aaron and Elicia
Chad
Vic and Ruth
Deb and Bill
Deb and Dave
Dave and Kara and Matthew, Mark, and Sam
Dick and Cathy and Charissa and Carly
Kate and another Kate
Brian and Jenna
And to the other people - some of my students, friends of friends, friends who came from their seats to help count money, Heather's medical personnel, and volunteers I met through brain cancer connections - thank you!
Finally, to the businesses who helped throughout - from equipment donations to monetary donations - thank you!
Sometimes it is fun to write about something other than brain cancer.
Michele - without you, this event would not have been. We know your plate is full, but you still found time to make certain everything pulled together. We love you and thank you for always being you!
Amy - although you were unable to attend, your constant words of support helped us feel we were always doing well. You have always been very positive with our cause and have celebrated our successes. Thank you!
Mike and Heather - when you were able to be there, you kept the cause close to my heart. I know you wanted the event to be as successful as anyone. Thank you!
Robyn - your artistic and creative ability made our event look professional. And all the work you put into our posters, brochures, donation board, etc. is unmatched by anyone. Your boundless effort to make everything perfect has given Leap-for-a-Cure a boost. Thank you!
Bob - your positive attitude toward everything helps us to keep looking up. Even though you could only be at one game, you could not have chosen a better one. Having you share in the last night met so much to us and to Heather. You are her rock; that is a bond that can never be broken. Thank you!
Jean - your energy with people and connectedness with the community is unmatched. Whenever I am with you, I know smiles and laughter are not far. Your willingness to be "there" at all times is incredible. Thank you!
Jeff - you are our crazy mingling friend. You make everyone feel a part of the "party," so no one feels left out. In addition, you are more perceptive than most people might think; thank you for all your words of wisdom throughout.
Brandi and Jeff - you two were FABULOUS emcees. We could not have asked for any better than you two. Thank you!
Obviously, UNO hockey coaching staff and players - thank you for being so willing to support our cause.
And to all of our other friends and family who volunteered time to help our effort, THANK YOU!
Aaron and Elicia
Chad
Vic and Ruth
Deb and Bill
Deb and Dave
Dave and Kara and Matthew, Mark, and Sam
Dick and Cathy and Charissa and Carly
Kate and another Kate
Brian and Jenna
And to the other people - some of my students, friends of friends, friends who came from their seats to help count money, Heather's medical personnel, and volunteers I met through brain cancer connections - thank you!
Finally, to the businesses who helped throughout - from equipment donations to monetary donations - thank you!
Sometimes it is fun to write about something other than brain cancer.
Tuesday, February 3, 2009
Just a Quick Update
We are headed to San Francisco in February. The radiologist, Dr. Chang, and the tumor board feel that the "something" could be new tumor growth, or active cancer cells. Thank goodness we are on top of the situation so little time is being lost. Heather will start her chemo tomorrow night (2/3) for 5 days, then on Feb. 25 she will have an MRI/MRSpectroscopy, which will help determine what the "something" and "leakage" is. Even though the pathology report states "consistent with new tumor growth," the report could be wrong. We will all feel better once we visit with Dr. Chang.
Heather's steroids have certainly taken a liking to her. She gained 12.5 pounds in one week! When she told Dr. Popa that her knees and ankles ache, Heather was expecting to hear, "That's a side-effect from steroids." Instead, Heather heard, "That's because you have gained so much weight"! They both got a chuckle from that.
We will have more TV coverage soon. Channel 3 (KMTV) filmed a segment last night at our house as we were working on the UNO Hockey / Leap-for-a-Cure event. Robyn, Jean, Jon, Michele, Mike, Heather, and I were all busy as the photographer filmed. Nothing was staged. We were very busy folding brochures, updating our signs, writing for the program, writing the script, etc. Carol Wang was very professional and very nice. She fit in well and was very easy to talk to. She also interviewed Heather and me, so it will be interesting to see how the story is developed and aired. At this time, we don't know when it will be on TV. We have been very fortunate with media coverage: KETV (Channel 7), Omaha World Herald (2 stories), KPTM (Channel 42), and now KMTV (Channel 3)! Hopefully, Omaha is getting word: BRAIN CANCER needs support and funding. I don't want to go on the bandwagon, but FYI: funding has been cut for brain cancer.
Lastly, I want Michele to know how much we appreciate her efforts, time, and energy as she has really pulled the UNO event together. Without her involvement, we would not have been able to do it.
Let's all PRAY for good news in San Francisco and for a successful UNO Hockey / Leap-for-a-Cure final weekend!
Heather's steroids have certainly taken a liking to her. She gained 12.5 pounds in one week! When she told Dr. Popa that her knees and ankles ache, Heather was expecting to hear, "That's a side-effect from steroids." Instead, Heather heard, "That's because you have gained so much weight"! They both got a chuckle from that.
We will have more TV coverage soon. Channel 3 (KMTV) filmed a segment last night at our house as we were working on the UNO Hockey / Leap-for-a-Cure event. Robyn, Jean, Jon, Michele, Mike, Heather, and I were all busy as the photographer filmed. Nothing was staged. We were very busy folding brochures, updating our signs, writing for the program, writing the script, etc. Carol Wang was very professional and very nice. She fit in well and was very easy to talk to. She also interviewed Heather and me, so it will be interesting to see how the story is developed and aired. At this time, we don't know when it will be on TV. We have been very fortunate with media coverage: KETV (Channel 7), Omaha World Herald (2 stories), KPTM (Channel 42), and now KMTV (Channel 3)! Hopefully, Omaha is getting word: BRAIN CANCER needs support and funding. I don't want to go on the bandwagon, but FYI: funding has been cut for brain cancer.
Lastly, I want Michele to know how much we appreciate her efforts, time, and energy as she has really pulled the UNO event together. Without her involvement, we would not have been able to do it.
Let's all PRAY for good news in San Francisco and for a successful UNO Hockey / Leap-for-a-Cure final weekend!
Sunday, January 25, 2009
"I Don't Know"
So often I hear myself saying, "I don't know." I try very hard to be informed and to look up everything I may not know or understand about Heather's situation. However, even after asking questions and researching everything that I know to ask and research, I still say, "I don't know" too often for my liking.
We went to San Francisco for Heather's January 20 appointment. Because we did not think about bringing her January 5 MRI disc with us, Dr. Chang could not give us much information. Heather's brain was quite swollen then (January 5) and she went on her steroids, which did reduce the swelling a ton. But Dr. Chang could not see the comparison without the disc. She told us there was obviously "something there" that was not on the November MRI taken in San Francisco. But, knowing that Heather's brain swelling symptoms had diminished and her strength had returned to her left side, Dr. Chang felt comfortable that the steroids were working. But, the "something" was still there. So, upon our return to Omaha on Wednesday, we immediately "one-day" delivered the disc to UCSF Medical Center in hopes Dr. Chang would be able to present it to her Thursday morning tumor board meeting. Of course, our $60 "one-day" FedEx delivery wound up being a two-day delivery, so we have to wait until next Thursday.
Basically, Dr. Chang called and told us that she wants to see Heather the week of February 23 if the tumor board agrees the steroids are working and the "something" on the MR is from swelling. If the tumor board feels it might be something other than swelling, Dr. Chang will want to start another type of treatment before Heather's scheduled Temador treatment in two weeks. Heather also has some "leakage"; when I asked if that was normal and just part of the radiation, Dr. Chang said leakage is "nonspecific." I have tried to research this, but so far have not had much success. However, Dr. Chang reaffirmed that the swelling is from the radiation.
Because I see Heather almost daily and talk with her several times a day, I believe all is good. I refuse to think we have anything to worry about at this time; however, Heather is feeling a bit stressed right now. I think she believes if all was well, she would not have to return to San Francisco until the end of March. Because Dr. Chang wants to see her within a month, Heather is a little uncomfortable about it.
Heather's hair is beginning to grow in places, and only the top of her head remains hair-follicle free. I think she is excited about her hair starting to show some growth. She will, however, continue to shave her head as long as the top of her head is bald.
One somewhat funny situation: When Heather started her steroids, she started eating non-stop. We all knew the steroids would do that, but she was really eating a lot! She also had tons of energy, and needed little sleep, which is NOT normal for Heather. Well, come to find out, she was accidentally taking double dosage for 10 days! I think even though Heather was not happy with herself for making such a mistake, she was happy to know that she won't be uncontrollably eating as much.
As always, we continue our prayers and efforts in our fight against brain cancer! Please join the fight.
We went to San Francisco for Heather's January 20 appointment. Because we did not think about bringing her January 5 MRI disc with us, Dr. Chang could not give us much information. Heather's brain was quite swollen then (January 5) and she went on her steroids, which did reduce the swelling a ton. But Dr. Chang could not see the comparison without the disc. She told us there was obviously "something there" that was not on the November MRI taken in San Francisco. But, knowing that Heather's brain swelling symptoms had diminished and her strength had returned to her left side, Dr. Chang felt comfortable that the steroids were working. But, the "something" was still there. So, upon our return to Omaha on Wednesday, we immediately "one-day" delivered the disc to UCSF Medical Center in hopes Dr. Chang would be able to present it to her Thursday morning tumor board meeting. Of course, our $60 "one-day" FedEx delivery wound up being a two-day delivery, so we have to wait until next Thursday.
Basically, Dr. Chang called and told us that she wants to see Heather the week of February 23 if the tumor board agrees the steroids are working and the "something" on the MR is from swelling. If the tumor board feels it might be something other than swelling, Dr. Chang will want to start another type of treatment before Heather's scheduled Temador treatment in two weeks. Heather also has some "leakage"; when I asked if that was normal and just part of the radiation, Dr. Chang said leakage is "nonspecific." I have tried to research this, but so far have not had much success. However, Dr. Chang reaffirmed that the swelling is from the radiation.
Because I see Heather almost daily and talk with her several times a day, I believe all is good. I refuse to think we have anything to worry about at this time; however, Heather is feeling a bit stressed right now. I think she believes if all was well, she would not have to return to San Francisco until the end of March. Because Dr. Chang wants to see her within a month, Heather is a little uncomfortable about it.
Heather's hair is beginning to grow in places, and only the top of her head remains hair-follicle free. I think she is excited about her hair starting to show some growth. She will, however, continue to shave her head as long as the top of her head is bald.
One somewhat funny situation: When Heather started her steroids, she started eating non-stop. We all knew the steroids would do that, but she was really eating a lot! She also had tons of energy, and needed little sleep, which is NOT normal for Heather. Well, come to find out, she was accidentally taking double dosage for 10 days! I think even though Heather was not happy with herself for making such a mistake, she was happy to know that she won't be uncontrollably eating as much.
As always, we continue our prayers and efforts in our fight against brain cancer! Please join the fight.
Monday, January 12, 2009
Whew!
Heather has just finished her second month of Temador. YEAH for her not being sick! She has been tired and sleeping, but I don't think she has slept as much as last month. However, this time she had fluid - along with anti-nausea, electrolytes, anti-stress, and white blood cell "stuff"-infusions Day 1 and Day 3. Originally, she was supposed to begin on Monday, but Dr. Popa felt Heather needed another MRI because of some concerns with Heather's left side. The MRI revealed some edema around the brain. In addition, Dr. Popa wanted Dr. Long to view the MRI and compare it to the previous one from San Francisco. Because of her left side "issues," Heather is doing physical therapy and occupational therapy every week. Dr. Long feels what may look like tumor growth is really dead cells from the radiation - necrosis, I think. We will learn more when we return to San Francisco on January 20.
Although Heather has handled this round much better, she was too tired to attend the UNO Maverick Hockey / Leap-for-a-Cure event this weekend; but hopefully she will be able to attend in two weeks for the second of three weekends. Speaking of the weekend, LFAC has teamed with UNO hockey to promote brain cancer awareness. I am so excited about this event. Mike Kemp, head coach, has set a $30,000 goal. If the goal is met, all players and coaches will shave their heads Center Ice after the February 7 game. Although it sounds like a lot - and it is - Omaha seems to support good causes, and this is a good cause. This fundraiser is a wonderful opportunity for Brain Cancer Awareness and for UNO Maverick Hockey to get involved. The players are now going to visit Methodist Estabrook Cancer Center on Monday, January 19. Community work is vital for connectedness.
I just received notice today that the National Cancer Institute has made a preliminary decision to slash funding by 50% for the Adult Brain Tumor Consortium. That means research will lose funding, Trials will be cut, and brain cancer patients will suffer. Brain cancer patients and family rely on the hope of research; without research, treatment cannot advance. I think it is time for a check and balance on all funding - for everything! I don't care about "bridges to nowhere," nor do I care about flies mating. I just want a cure for cancer - ALL cancers!
As I mentioned earlier, I am so excited about UNO Maverick Hockey, Methodist Estabrook Cancer Center, and Leap-for-a-Cure's teaming together in the effort to fight brain cancer. Planning has been in the works for months, and now it is here. The first of three weekends is over, but I think the event will only get better. Some special people who have supported and organized and helped make it work: Mike Kemp, Michele Roberts, Shirley Fey, Robyn Sitzman, Jean Koerten, and Ryanne Hastings. Of course, others have helped, but these people have made the commitment as a committee to work extra hard and to share their talents. THANK YOU!
It seems as if I am always eager to go to San Francisco as there is always something new to learn. As always, I will have my list of questions and will keep my fingers crossed for GOOD news. Since 2008 is over, I am believing in 2009!
Although Heather has handled this round much better, she was too tired to attend the UNO Maverick Hockey / Leap-for-a-Cure event this weekend; but hopefully she will be able to attend in two weeks for the second of three weekends. Speaking of the weekend, LFAC has teamed with UNO hockey to promote brain cancer awareness. I am so excited about this event. Mike Kemp, head coach, has set a $30,000 goal. If the goal is met, all players and coaches will shave their heads Center Ice after the February 7 game. Although it sounds like a lot - and it is - Omaha seems to support good causes, and this is a good cause. This fundraiser is a wonderful opportunity for Brain Cancer Awareness and for UNO Maverick Hockey to get involved. The players are now going to visit Methodist Estabrook Cancer Center on Monday, January 19. Community work is vital for connectedness.
I just received notice today that the National Cancer Institute has made a preliminary decision to slash funding by 50% for the Adult Brain Tumor Consortium. That means research will lose funding, Trials will be cut, and brain cancer patients will suffer. Brain cancer patients and family rely on the hope of research; without research, treatment cannot advance. I think it is time for a check and balance on all funding - for everything! I don't care about "bridges to nowhere," nor do I care about flies mating. I just want a cure for cancer - ALL cancers!
As I mentioned earlier, I am so excited about UNO Maverick Hockey, Methodist Estabrook Cancer Center, and Leap-for-a-Cure's teaming together in the effort to fight brain cancer. Planning has been in the works for months, and now it is here. The first of three weekends is over, but I think the event will only get better. Some special people who have supported and organized and helped make it work: Mike Kemp, Michele Roberts, Shirley Fey, Robyn Sitzman, Jean Koerten, and Ryanne Hastings. Of course, others have helped, but these people have made the commitment as a committee to work extra hard and to share their talents. THANK YOU!
It seems as if I am always eager to go to San Francisco as there is always something new to learn. As always, I will have my list of questions and will keep my fingers crossed for GOOD news. Since 2008 is over, I am believing in 2009!
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