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."
Thursday, June 18, 2009
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.
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